Living with Personality Disorders Supporting Better Parenting

Parental Mental Health and Child Welfare Network
Living with Personality
Disorders
Supporting Better
Parenting
Notes from two study days held in 2009
The Parental Health and Child Welfare Network,
SPN,
2nd floor, Goldings House, 2 Hays Lane,
London SE1 2HB.
Tel: 020 3397 1698
email: [email protected]
Web: www.pmhcwn.org.uk
SPN is a registered Charity in England and
Wales. Reg. No. 1126023
The Parental Health and Child Welfare Network
is funded by the Department for Children
Schools and Families.
cover by jean healy (www.jeanhealy.com) using pictures taken at the Cans Festival, London 2008
Contents
Living with Personality Disorder - Supporting Better Parenting. Vicky Nicholls
4
Foreword -Professor Eddie Kane, Director, Personality Disorders Institute
5
The National PD Programme and some key issues relating to parents,
children and families - 6
The Haven: Personality Disorder and Children and Families 12
Living with a Borderline Personality Disorder; and Living with a Parent with
BPD Borderline Personality Disorder.
21
Consequences of trauma: Understanding where personality disorders come from.
27
Ethical Foundations of Good Practice with Parents of Mental Ill Health
32
The Challenge Of Caring For Personality Disordered Parents
35
A Systemic Approach To Working With Parents With Personality Disorders 41
Personality Disorders and the Family - What Services?
44
Service user/professional relationships: discussing real life examples.
46
The early parent infant relationship: possible difficulties for personality
disordered parents and their infants
48
An Infant-led Approach to Problems in Infancy and Early Childhood
Incorporating Parental Trauma Clinic
50
Experience Of Parenting Through A Therapeutic Community
57
Experience Of Parenting Through A Therapeutic Community Process
60
NSPCC SMART group working with children whose parents use substances
62
Working with parents with personality disorder: impact on professionals
64
PD Knowledge and Understanding Framework development and materials
69
What Can Work As A Therapist From A Systemic Perspective With Parents
With Mental Health Problems ?
71
NICE recommendations relevant for parents with personality disorders (for Borderline
Personality Disorders and Antisocial Personality Disorder plus links with SCIE)
74
Growing Up With Parents With Personality Disorder And What Would Have Helped
77
Art As A Therapeutic Process To Safe Self Expression And Recovery
79
Living with Personality Disorder - Supporting Better Parenting.
Note
The Parental Mental Health and Child Welfare Network (www.pmhcwn.org.uk)
held two study days during the course of 2009 to explore the realities of living
with personality disorders, with a view to supporting better parenting. This report
represents the output from both days combined. As far as possible we have included
powerpoints and notes from each session. We hope you enjoy the report and
disseminate the riches it contains to your networks.
Thank you to everyone who contributed to both events, including all the presenters
and workshop facilitators, as well as those who gave of their time to take notes and
to write them up. A special thanks to Eddie Kane, Nick Benefield, Alison Faulkner, Sue
Imlack and members of Personality Plus, and to Ciaran Healy for stepping in at the
last minute to rescue the first event.
The PMHCWN is a project of the Social Perspectives Network (www.spn.org.uk) and
funded by the Department for Children, Schools and Families (www.dcsf.org.uk) with
a three-year grant from April 2008 – 2011.
Vicky Nicholls
March 2010
4
Foreword
Professor Eddie Kane, Director, Personality Disorders Institute
We do not know everything about Personality Disorders and how they affect the
lives of people who live with label and those they interact with. What we do know
is that individuals with the diagnosis and those close to them have for many years
lived in a cycle of rejection. This rejection is felt at a very personal and damaging
level for individuals and their families. The two Study Days reported here offered a
space for people who have and still do experience the daily fight to access a life and
relationships that many of us take for granted. They gave an opportunity to share
their experiences with each other and with people who deliver services and policy
makers.
The days covered a wide range of issues from the national policy framework through
new education and training initiatives to most importantly the lived experience of
personality disorders and their impact on families and relationships. The inspiration
of people who daily triumph over adversity was a thread running throughout the
presentations and workshops.
There is still a long way to go before the ambition of ‘Breaking the Cycle of Rejection’
can be realised but progress is encouraging. There is a genuine commitment from
those with policy-making leadership to continue to build on and consolidate the very
real advances made in the last few years. The new Knowledge and Understanding
Frameworks are, for the first time, beginning to address the massive need for welltrained staff who are sensitive and aware about Personality Disorders across Health,
Social Care and Criminal Justice. This gap has been recognised by service users and
carers for many years; there are signs that service agencies and professionals are
now realising the need to change and taking action.
Hearing about these national initiatives being reflected in local action is always
welcome but the real opportunities to learn always comes from those who cope
with the realities of having and living with a Personality Disorder. The study days
were rich in those opportunities to learn from experts by experience encompassing
personal journeys of recovery through creativity, examinations of how close family
relationships can be more effectively managed to the experiences of professionals
who work hard to understand and respond sympathetically and helpfully.
These opportunities to share experiences between people who have no choice but
to face the realities of Personality Disorders and those who choose to do so through
their day-to-day work are invaluable. They develop understanding, generate new
ideas, attitudes and approaches to the development of services that are slowly and
still patchily beginning to an improvement in experience of service users and their
families.
This Report of the Study Days can only offer a brief summary of the content but more
importantly the experience. We hope it makes a useful contribution to what some
have called a new beginning for people with Personality Disorders and their families.
Society has for too long supported the debilitating cycle of rejection which individuals
have had to live with. There are real signs that we have reached a tipping point and
that with a united face from service users, carers and professionals we can push
even further and radically improve the experience of all who live with a Personality
Disorder.
5
The National PD Programme and some key issues relating to
parents, children and families
Nick Benefield – Head of the National PD/DSPD Programme
(Personality Disorders/Dangerous and Severe Personality Disorders)
Department of Health, Department for Children, Schools and Families and Ministry of
Justice
Notes Judy Foster
Nick gave a tour de force of a presentation. He had overheads with a wealth of
detailed information (see opposite).
The wider PD ‘Project’
We don’t know everything about PD, so we need to investigate and experiment with a
broad model. This project (2001-2012) is essentially an inquiry that requires staff to
experiment, learn and develop. To understand personality disorders better demands a
very broad conceptual framework (eg social, interpersonal, biological, psychodynamic,
cultural, religious, political for starters). The policy formulation, service delivery and
research tasks need the active collaboration of health, social care, criminal justice and
research resources. Only then can we better understand the relationship between
the personality, life course development and mental distress, unstable or asocial
behaviour and its impact on social stability, social inclusion and citizenship.
The project aims to break the cycle of rejection – so often the experience of people
with personality disorders. The project therefore links to a number of major policies the social exclusion action plan, the Mental Health Act 2008, Recognising Complexity:
commissioning guidance, NICE guidance, the Bradley review of offender mental
health, New Horizons, Care Matters, CAMHS review, and Think Family.
The programme has about 30 pilot service projects, starting with work done by
Maria Duggan (see her earlier work in SPN papers 1 and 2) and a major Training and
Education programme (The Knowledge and Understanding Framework) Service users
have a lot of capability so it is essential that they participate in the developments and
training programmes. The KUF will be rolled out nationally in 2010.
The main issue for someone with a personality disorder is that their internal word
clashes with the external world in which they live. They are therefore frequently on
the cusp of a psycho-social crisis and are represented in every mainstream workload
in the community. They need to be involved in the provision of supportive services.
PD knowledge and understanding needs to be in the core training of all key workforce
professionals. Personality disorders should be considered as a central factor in public
mental health policy.
In the NHS and NOMS (National Offender Management Service) personality disorder
services can be considered in 6 tiers:
• Tier 1: consultation, support and education
• Tier 2: community-based treatment and case management
• Tier 3: intensive day services, crisis support and case management
• Tier 4: specialist, inpatient and intensive services (regional referrals – NOMS)
• Tier 5: secure and forensic PD services (regional referrals – NOMS)
• Tier 6: DSPD units – Broadmoor; HMP Whitemoor, HMP Grendon, HMP Low
Newton (national referrals – NOMS)
6
EPD policies (early stage intervention)
This is the children and families stream of work. The programme commissioned
David Utting to investigate the feasibility of intervention programmes for children
likely to go on to develop anti-social PD. Multi Systemic Therapy (MST) was found
to be the most effective internationally and a researched pilot programme in 12
sites is now seeking to validate this effectiveness in England. We want to identify
effective interventions for young people aged 11-18 at risk of social exclusion through
being placed away from home and community, either in care or custody. We want
to develop family and community based programmes and check if Multi Systemic
Therapy is as successful in England as elsewhere. The project has 4 years of funding
in 12 different partnerships. The transition period of 16-18 emphasises the difficulties
in transferring from children to adult services. Youngsters talk about their need to
build up their sense of individuality and personality rather than to recover it. We
are finding that those with ‘conduct disorders’ in the school environment often have
personality issues that are pervasive and enduring unless they are recognised and
appropriate interventions made.
Some key issues relating to parents, children and families
We need to understand how parents think about their own needs and their children’s
needs. There is a dynamic relationship between the difficulties for parents and
the needs of children. We need to understand more the impact that personality
disorder has on parenting capacity (see the article on the Haven below).How can
we increase psychologically informed environments?) There is a need for supportive
and collaborative interventions rather than coercive ones. Help needs to be flexible,
consistent and available over a longer timescale as well as crisis support. Parent
networks can help but in the end the meaning of Margaret Waddle’s phrase ‘standing
by’ sums up what is often needed as an essential thinking function to enable parents
and families to facilitate rather than exacerbate developmental difficulties.
Questions:
What are the referral needs for a recommendation for MultiSystemic Therapy?
Those who are at risk of care, are beginning to offend, excluded or failing at school
and in difficulty at home.
Can the programme encourage local authority social work intervention through
appealing to LA DH targets (ie. the need for longer term intervention when they
measure throughput)?
We are working with PCTs and the Health and Justice departments and with local
authorities in our the areas with MST pilot sites but accessing local authority policy
areas is a weakness in other areas of the programme.
Will it follow with joint commissioning?
Joint commissioning represents a major objective in the future implementation of PD
policy but the way this will be achieved remains a challenge. Local service support
and help for service users with PD will require more collaborative policy and delivery.
For information see website: www.personalitydisorder.org.uk
7
Living with Personality Disorders – supporting better
parenting.
Policy Overview & Supporting Practitioners
Nick Benefield
Head of the National PD/DSPD Programme
Department of Health
Within the changing
legislative
framework of
human rights,
mental health &
criminal justice
8
a personality disorder specific training programme for
all staff that spans basic awareness up to MSc level
"# a personality disorder specific training programme for
all staff that spans basic awareness up to MSc level
National referrals
For example, prison
officers, probation staff,
forensic mental health
teams, etc.
Regional referrals
• Broadmoor
• HMP
Whitemoor
"# NOMS
Non-forensic services
Forensic services
NOMS
Gatekeeping using
shared protocols
For example, mental
health teams, drug
alcohol service
providers, etc.
NOMS
s
Tier 3: Intensive Day Services, Crisis Support and Case Management
Tier 2: Community-based Treatment & Case Management
Specialist services
Tier 1: Consultation, Support and Education
!
Locality
Locality
Locality
Locality
EPD Policy Aims
9
Relative volume of
need
Case management &
pathway ‘lanning
Tier 4: Specialist, Inpatient and Intensive Services
For example, prison
officers, probation staff,
forensic mental health
teams, etc.
Key
• HMP Grendon
• HMP LowNewton
Tier 5: Secure and Forensic PD Services
!
Tier 6: DSPD Units
Regional referrals
For example, mental
health teams, drug
alcohol service
providers, etc.
Locality
10
11
The Haven: Personality Disorder and Children and Families
Heather Castillo, Director The Haven Project, Colchester
Background
Heather, who came in from North East Essex with several people who use the Haven’s
services, painted us a lively picture of what the Haven is about. She explained their story
began 10 years ago with a piece of research carried out by the Personality Disorder Research
Group, eighteen clients with the diagnosis who worked with her to talk to 50 local people who
had attracted the diagnosis. Some research respondents were parents and said things like:
‘I felt the social worker was punishing me again after being punished/abused as
a child. It make me feel like she was saying - YOU WILL NOT BE HAPPY.’
‘I was breast feeding my daughter and they took her away - After she’d gone
home I took an overdose. I threatened to leave and I was sectioned. I had
E.C.T. - I told nurses I was dying without my child.’
‘I’ve been treated like I’m a mad person, instead of an ill parent or disabled
person. I’m treated like I’m not trying hard enough.’
There was a lot of bitterness on the part of parents with this diagnosis and several reasons
why they carried out this research:
•
•
•
•
Rejections from services
Revolving door, secure provision
Even prison
Some had lost their children via child protection procedures
The research report was submitted in early 2000 and was followed by journal articles and
many conference presentations. It was eventually published as a book in 2003. Meanwhile
the group linked with the DoH National Agenda, the Expert Personality Disorder Group set
up to look into ‘the personality disorder question’, and became part of the parallel group
of ‘Experts by Experience’. The DoH proposed PD pilots in each region of England. Heather
asked local service users what they felt would be a service that would really meet their needs
and The Haven was planned entirely around those wishes. By March 2004 they received the
incredible, but very scary, news that they had been selected as one of 11 pilot projects in the
Country.
The Haven
Housed in an old Rectory in Colchester, The Haven has now been open for five years. The
catchment area is a 20 to 25 mile radius of the project and there are various parts to the
service which work together.
First, the clients asked for a 24/7 service, a crisis service that would swiftly meet their needs
before matters escalated. The crisis service consists of a 24-hour phone line and text service,
a safe centre where people can come in crisis any time of the day or night, and four shortstay respite beds.
Again, responding to the ideas of its service users, a day service adopts a tiered approach
offering a variety of groups and one to one intervention, ranging from friendship groups, non
stressful activity groups, complementary therapies, through to more structured skills groups
such as DBT (Dialectical Behaviour Therapy), and one to one therapy.
The Haven is also based on a therapeutic community model where clients continue to own
and drive developments and where an Acceptable Behaviour Policy has been democratically
negotiated by clients and is administered by them. The policy states that clients should not
12
self-harm, overdose, misuse substances or engage in disruptive behaviour. If they do they
will be up at a community discussions meeting and have to give account of their behaviour to
their peers, and there are consequences. This is a huge learning experience for all concerned
and helps The Haven to live up to its ethos of being a very safe haven.
Changes in use of mental health services
By 2006, analysis of use of the wider service area showed a drop in use of all services
measured, for the first fifty Haven clients who had been with the project for one year.
Notably, psychiatric hospital in-patient admissions had dropped by 85%. Although continuing
to represent a burden for GPs and the A & E Department, use had still dropped by 25% and
45% respectively. Calculating the reduction of the use of the wider service area against health
and social care figures showed that the project had saved £220,000 over and above the cost
of The Haven, on the first fifty clients alone.
Developing the Transitional Recovery service
The Haven thus fulfilled its original promise to engage the client group in the area and to
provide cost savings in the wider service area. But concerns began to be expressed about
whether the project would create a new kind of dependency. Most of the 110 registered
clients were still with them and questions were asked about whether they could move beyond
stability achieved at The Haven. This also had a bearing on capacity at the project and the
need to continue to register new clients.
Therefore, The Haven developed a new category and way of working called Transitional
Recovery. The theory underpinning this addresses difficulties in attachment associated with
personality disorder. Short-termism, and efforts to move clients too quickly through a service,
and to discharge, can often backfire causing swift loss of any confidence built up, followed by
relapse. The approach adopted at The Haven is that clients can graduate to the Transitional
Recovery Category, which will represent minimal use of services. But, as they progress in the
outside world, they may still remain registered at the project as a safety net. This puts the
process of moving forward under the client’s control. For many clients The Haven represents
the home they have never had. There is a Transitional Recovery Group, which is about
moving forward and encompasses the various dimensions of social inclusion i.e. education,
employment, volunteering, community engagement, housing, and tackling stigma and
discrimination.
As well as personal development skills and educational tutoring, bushcraft and outward bound
activities are on offer. The Transitional Recovery initiative saw 25% of clients signing up to
the group once they realized they would not lose The Haven by making progress (a cunning
plan!).
Children and Families
Children and Families were encompassed as one of the domains of social inclusion and
parenting classes were set up tailored to the needs of parents with this diagnosis. Some
feedback from those parents who have attended classes is:
One of the traits of having personality disorder is seeing things as black or
white, good or bad, so it was hard to relate to the lessons to begin with. I think
we’ve all learned a lot of positive tips and positive practice, like not rewarding
negative attention seeking. I think we are here to learn to see our children as
human beings who are owed respect and, in that way, they will learn to respect
us.
I like the way she gets everyone to join in and promotes discussion. She
doesn’t say this is black and this is white, she helps us to come to our own
conclusions. She is very thought provoking. Using “I” language is particularly
helpful. I’ve given up this “you” accusative stuff.
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I’ve done a social services parenting course and this is in a different league. I
did a six-week social services one and it was like a kindergarten one – “don’t
pick your children up by the ears”!! – kind of thing. The content of this course
is fuller and an adult-based one. It’s targeted at adults and it’s looking at
things from both sides to bring adult and child together. It has also confirmed
some of the good things we are doing. After you’ve been poked and prodded
by social services this course validates and gives confidence in what you are
doing that is right.
Researching what matters to people at the Haven
The Haven Research Group consists of 10 Haven clients and Heather. Over three years data
was collected at focus groups and individual interviews, from 60 Haven clients and 6 family
members and carers, leading to 770 pages of verbatim transcripts!
33% of Haven clients had been in care, 55% had children and 23% had children in care.
Severe personality disorder is related to insecure attachment – damaging experiences,
usually in early life. Because of these experiences, thereafter, someone may freeze on
separation and be unable to sustain organized patterns of behaviour. This can result in
personality disorder in adult life.
A sense of safety and building trust emerged from the Haven research as the foundation
stone on which progress is built. The 24/7 nature of the service was given the highest rating
in how The Haven began to help people. Even when someone is not present at the project it
exists as an object that can be conceived, a safety net.
Feeling cared for was singled out as the second highest way in which The Haven began to
help people. Warmth and kindness can be infectious and, if clients are treated well, they in
turn treat others well and the atmosphere becomes one of warmth and care.
A sense of belonging and community was cited as another crucial step in the journey of
recovery, and clients involved in the research defined The Haven as giving them a sense of
home and family, “It’s the family I never had”.
Next was Learning the boundaries. When emotional development has not provided
secure attachment the first step in treatment is to recreate secure attachment. The first
steps in the pyramid have begun to reconstruct attachment. However, although attachment
may be longed for it is also feared. As individuals struggle with fear, pain, sadness and
anger, primitive emotions may come into play. The ability to be honest may be blocked by
feelings of shame and humiliation. Denial, lying and splitting may be demonstrated along
with unconscious impulses to destroy what is good. Living too long with untenable emotions,
often in a state of chronic hyperarousal, people with personality disorder frequently adopt
dysfunctional behaviours to numb unbearable feelings and swiftly bring their emotions down
to a manageable level – self harm, substance misuse.
So … Heather explained that love is not enough to create psychological safety The Haven has
to have ways to challenge self destructive behaviours and people’s capacity to create negative
effects on others. All this represents boundary setting encompassed in the Acceptable
Behaviour Policy: the community as a whole takes responsibility for boundaries at The Haven
and clients are expert at injecting realism into such situations, because they have been there.
In a client group desperately in need of therapy, trust and self-worth can be so low, and
behaviour so chaotic, risky and destructive, that meaningful therapy cannot take place.
Having a history and pattern of expressing emotions destructively in mainstream services,
when someone registers at The Haven these patterns do not disappear overnight. They
have found that it is only when sufficient progress has been made on the first four levels that
people can begin to learn to contain their experiences and develop skills and healthy coping
strategies.
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Hearing from people who are clients of The Haven
Three Haven clients came with Heather to talk a little bit about their experiences and to help
to answer questions.
The first is Holly (pictured overleaf with her first baby son and then with her partner Paul
and their second son and new baby daughter born this year). In addition to Parenting
Classes, one of the types of support The Haven offers is outreach, usually from our social
work students. We have two on placement each year, and they have gone out to parents to
support them with their children in the home and in the community.
Holly
2007: I’m learning how to be a mum. Another big skill I’m learning is to try and
stand on my own two feet and try and deal with stuff, instead of asking The Haven for
so much support. I’m learning how to be patient, how to interact with someone who
can’t talk, and how to love someone who’s so dependent on you, learning to love, you
could say. I spent 11 years in hospital, you know, and the thought of people trying
to rush me into recovery when I’ve had it done so many times before where people
have tried to make me recover, where it hasn’t been at my speed...but now, since
coming to The Haven, I can dream about what I’d like to happen in ten years time.
I have actually got a future to think about and it’s not just a one minute thought, it
actually feels like there is going to be something…just to be happy, a future of being
happy, seeing my son happy, and just watching him grow. I have never met such a
wonderful bunch of people, and staff especially, and the kindness and everything that
you can imagine really, that a lot of people haven’t had, it’s just out of this world and
if it’s okay I would just like to add a great big thank you, and I hope this is the way it
will always stay.
2008: I now have another lovely baby boy. One of The Haven social work students
comes out most weeks to give us support and comes to any meetings I have.
Because of this I don’t feel secluded and I can still be part of The Haven. It’s
really nice to have someone to talk to, even if she is a chatterbox! But that’s good
distraction too. This has given me real practical and emotional support and I’m very
grateful.
Paul
Max, my son, was born before I had a breakdown. When I became ill the first thing
I asked is, “who can look after Max?, and to make sure he was safe. When you
become unwell you don’t abdicate your responsibility, it doesn’t stop, it’s in you. In
society, those I call the judges with the pen, those who can write things down about
you and who surmise about us, basically neglect to see half of the problem is having
your responsibility for your offspring removed. Some people are not suitable for
parenting and that’s fair do’s, where the child is at risk. But one thing that made me
very unwell was having my son removed. I didn’t see him for four months because
the Court and his Mum removed him from me, although she had a history of leaving
him. If you ask Max his preference on parenting styles it’s where he’s happy in life
and being encouraged and loved. I’m not a danger to him. I’ve been vetted and
scrutinized, continuingly at length, ongoingly at length, unnecessarily at length. But
they can’t argue with a child. He’s 13 now and he’s got all A’s and he’s been listed in
the corridors of his school as an achiever. He’s been stood before the class and given
applause. In the first half of term he has achieved his school’s silver award and is on
target for the top award. What makes me most proud is the days he says to me, “I’m
tired but I’m happy”, - “do you know what Dad, I eat more but I’m fitter”. This says
15
to me he’s fed properly and he’s happy. He loves the routine I give him. It adds up
to respect and love and it works both ways, and he would echo that, if Max was stood
here.
Carla
I took my first overdose before I had any children and the circumstances of your life,
that you don’t choose, can throw you into that kind of desperation. All we need is
support, encouragement and belief. Being involved in The Haven, I have become
more aware of my emotions and my health, recognizing when to get help, asking for
help, being able to use the crisis phone line, because I can’t always come in because
I’ve got the children, but it makes such a difference to be able to phone. I might be
older and wiser now but I still need the kind of support The Haven offers. The social
network is so good too, it bring you out of yourself. I now see The Haven tutor for
Maths and English and I’m at college doing Maths and English GCSEs. I wouldn’t
have stuck it out if it wasn’t for The Haven. I had my son when I was 14 and I had
alcoholics as parents, so I feel as if I am getting a chance to start again. Even with
me having PD, I feel I’m paving the way for my children. I don’t want them to have
the difficulties that I had. I think my kids are no different from other children. They
lead a normal life and I make that happen for them to the very best of my abilities.
I’ve got award-winning daughters, one in her year and the other in the whole school.
It’s important that they are happy and that they have a stable life. Everyone with PD
needs a Haven and all parents with PD definitely need a Haven.
Website: www.thehavenproject.org.uk
16
Early Personality Disorder Research
Subsequent Developments
The Haven
Haven Front Entrance
Welcome
17
Catchment
Area
Transitional Recovery
18
Transitional Recovery and Social Inclusion
Sixty-seven Haven clients
Parenting Classes
HAVEN HIERARCHY OF PROGRESS
The Journey of Recovery for Personality Disorder
19
20
Living with a Borderline Personality Disorder; and Living with a
Parent with BPD Borderline Personality Disorder.
This chapter combines two sessions by Nikki Wallis-Ginn and her daughter Ella.
Powerpoints from the talks given by Nikki at the first PMHCWN study day are included
alongside Ella’s slides from the second event. The write-up below refers to the session
at the second event held in November 2009.
Living with a Parent with BPD Borderline Personality Disorder
Ella (14) and her mother, Nikki Wallis-Ginn
Notes by Jeni Webster
What was striking about this workshop was that Ella was able to talk about living with
a parent with borderline personality disorder together with her mother, Nikki. And her
skills and competence in the powerpoint presentation. Ella was able to talk about the
times when it is not so easy to talk together, which her mother acknowledges when
she is able to listen, which was demonstrated in their joint workshop.
Ella and her mother referred to other issues that are challenging for the family,
including the fact that Ella also has her own problems for which she has access
to CAMHS. Nikki had taken the initiative to find help for her children from various
services, so that they may access support. Finding support that fitted with needs was
not so easy. Ella said she would like to have access to peer support groups, or ‘groups
that can show you the basic strategies that can help you deal with parents with BPD’.
The interactive space was used to discuss the kinds of help that the family would
value most, while also hearing about services that people at the workshop were
involved with in other areas, although the focus was on exploring suitable options
for individual families. One of the issues raised was the difficulties of accessing or
providing support when there are several different mental health problems in a family,
when peer support was felt to be more useful for living with specific diagnoses or
problems.
Part of the family’s challenges have been about fighting for help and support,
especially when adult mental health services take the stance that ‘’children do not
belong to us”. Nikki spoke about how these responses can easily be experienced as
rejection, not just from a professional but from the whole system. It could also feel
‘cruel’ when it seemed as if problems need to go to the level of children protection
in order to be eligible to access help. What is often not understood is the value of
‘knowing somebody’s there’.
In addition to discussing different forms of support for children with parents with
mental health problems, there was also some discussion about different forms of
therapy for individuals or for the whole family together. The discussion highlighted the
importance of feeling that needs were being acknowledged as well as that the therapy
being offered was right for them.
21
22
23
Living with a Parent With BPD
Borderline Personality Disorder
Hi I’m Ella! I’m 14 and I live with my
mum, Step dad and brother in St.Neots
My mum has BPD borderline
Personality Disorder.
So what is it like living with
BPD?...
Honestly, it’s great because she
understands me more because
she sometimes acts like a
teenager due to the mood
swings. But it’s no walk in the
park either. Because I’m a
teenager and we clash.
24
On a good day…
On a bad day…
On a good day, which is quite often. Me and mum get along fine. On a
good day no one knows she has it. It’s like it was never there. Yeah, I
know what your all thinking ‘yeah it is still there’ and I know that. it’s just
that it is less noticeable. I still know it’s there but you wouldn’t. Yeah I do
know your all professionals and your trained to know these sorts of things
but seriously you wouldn’t know unless you knew my mum really well. She
has the ability to hide it.
On a bad day it feels really hard. I might say
something really normal like ‘‘ mum what are we
having for tea?’’ and she could react either two
ways, the normal way like ‘‘ I don’t know’’ or the
slightly aggressive way ‘‘ I don’t know all you think
about is food! The world doesn’t revolve around
you!’’ Which is the sort of thing I would say. Again
the teenager thing.
What sorts of mood swings does
my mum have?...
Which do I prefer?...
•Short ones
I don’t really care to be honest, I like a mixture
it makes my life interesting you know? It
would be nice to have a good day everyday
but seriously that’s not going to happen. I’ve
had to face that. I’ve adjusted to it and to be
honest it’s normal to me. I’d rather have a
parent with Bpd rather than a normal parent
( if that is actually possible! Ha ha ha!) I would
trade my mum in for anything!!
•Ones that can last ages
•Stroppy teenaged ones
•Depressed ones
•Happy one ( a bit 2 happy though!)
•Mixed ones ( e.g like one minute happy, next
min sad etc)
What help does my mum get?...
How do these affect me?
• She goes to a support group called
Bridging the gaps.
• Mental Health Services
• Life line
• NHS
•How I’m feeling depending on how
mum is feeling
•My body language
•My behaviour
•My social life
25
What support do I get?...
Do I think they are useful?...
• Young Carers
• NHS
• CAMH
• I think they are useful to an extent. It is a
good way to talk things through and gain
new strategies.
• But cannot always be that useful
depending on how I am feeling on that
certain day I get the help
26
Consequences of trauma: Understanding where personality
disorders come from.
Art O’Malley, Consultant Psychiatrist with CAMHS in Runcorn,
Cheshire
Dr O’Malley stressed the crucial importance of the development of a healthy relationship
between mother and child in the first 3 years of life for the child’s long term emotional
health.
The Brain grows rapidly from last trimester of pregnancy to child reaches age of 3 years
(50% of adult brain size at birth, 90% of adult brain size at 3 years of age).
Brain needs stimulation of another (carer) in order to grow and make connections.
Early development is on right side of the brain which is related to sensory and emotional
development, language come later from 3 years onwards and this is processed in the
left side of the brain.
Research demonstrates that each stage needs to be processed – sensory / motor;
emotional; cognitive. There is a hierarchy of this processing; each stage needs to be
processed before moving on to next. Both top down and bottom up processing occurs
in adults. However in infants and children information processing is from the bottom up
i.e. through the body’s sensory and motor systems.
Child needs a safe environment to learn to handle emotions safely, if not learned safely
then child’s learning will be skewed and abnormal patterns of behaviour will develop.
Learning to self regulate our emotions is crucial to healthy emotional development and
to develop emotional resilience. Dr O’Malley has developed the BEST and SMARTER
therapeutic protocols. These mean: Body Emotions Senses & Trauma and Sensory,
Motor, Affective, Reprocessing of Thoughts & Emotions into Resilience respectively.
This is part of the innovative neurobiologically informed psychotherapy pioneered by Dr
O’Malley. By activating the brainstem and thalamus bilaterally, thalamocortical binding
occurs improving emotional and mental health and well being.
If child always has to worry about their own safety they are unable to develop self
regulating approach to their emotions.
If not able to develop affect regulation a stress response occurs. They will use flight or
fight responses if older (young child cannot flee – so will often freeze and seem numb
and passive when under threat).
Range of emotions child will develop will be of anger, mistrust, fear and panic, at a
cognitive level they will develop a sense of worthlessness. In adult life these same
responses will continue if they are not addressed at an emotional level (Dr O’Malley
considered that focusing solely on cognitive treatments e.g. CBT would not address
problems stored at a brainstem, midbrain or limbic system level. Such help is “only like
a sticking plaster” and is ineffective for traumatic memories.
In adult life if not addressed, strategies developed will include separating self out,
dissociation, cutting off part of self and aspects of the person’s personality leading
entirely different lives.(alters or different ego states)
27
Further trauma can lead to further fragmentation of personality which is adaptive to
situation at the time but maladaptive to person subsequently.
At the end of his talk, Dr O’Malley stressed the crucial importance of services for mother
and infant and of early intervention in the first 3 years of life.
Pat Ogden has developed Sensorimotor Psychotherapy – processing trauma through senses
and body. More information can be found on the website sensorimotorpsychotherapy.
org
Janina Fisher EMDR Consultant and trainer in Sensorimotor psychotherapy in Lincoln has
developed educational materials with visual representations e.g. of brain development
to help explain how people develop, why people behave in certain ways. Dr O’Malley
has also developed educational materials which are part of a training course he has
developed for clinicians interested in furthering their knowledge on the neurobiology of
trauma and the implications for psychotherapy. For further details you can contact him
by email: [email protected]
28
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31
Ethical Foundations of Good Practice with Parents of Mental Ill
Health - Michael Gopfert - Alder Hey Children’s NHS Foundation
Trust - Liverpool
•
•
•
Michael Göpfert,
Alder Hey Children’s NHS Foundation Trust, Liverpool
With Nora McClelland, University of Sheffield, & James Wilson, University College, London
•
Beneficence
Non-maleficence
Respect for autonomy
Justice
1)
2)
3)
4)
Good practice principles in adult mental health when
the patient is a parent:
Consider with the patient their motivation to be a good
parent.
2. Make the ‘Best Interests of the Child(ren)’ the guiding
principle of your recovery plan if the patient is motivated to
be a good parent for their child. Discuss with the family what
the best interests of the child(ren) may be.
3. If the patient does not seem to be sufficiently engaged with
their role as parent start liaison with children’s services
immediately.
•
1.
•
•
•
32
1) Where the family is viable, the best interests
of the child are held within the parent-child
relationship.
2) Being a child and becoming and being a
parent are social roles fundamental to
individual and social identity (Bowlby, 1988).
3) Within a parent-child relationship a parent’s
contribution is their capacity for preoccupation
with the child (Hill, 2004; Bowlby, 1999).
4) Mental ill health does not automatically
result in impaired parenting capacity.
If the parental role is an important social role in our lives, and if
recovery from mental ill health means that we are better able to
engage in meaningful social discourse (again), then the parental
role should be of central concern to patients who are parents and
those working with them.
There is no conflict between the best interest of the parent and
that of the child as long as both, parent and child are invested in
their relationship and the parent above all wants to do well by the
child, i.e.: The best interests of the child are paramount for the
parent (or for any other person invested in a caring relationship
with the child). This does not apply when the risk for the child
from the parent is too great.
Applying the paramouncy principle too literally without
consideration of the parent-child relationship and the needs of
each person within this relationship will mean that neither the
parent’s nor the child’s best interests are met.
Therefore the parent-child relationship is a core concern for the
social care or mental health professional.
When dealing with a patient who is a parent always
consider the effects of any intervention on their parenting
capacity and the child: e.g. drug effects, hospital
admission, discharge. This is your responsibility.
As a professional, talk and listen to the children, they live
with their parent and have a lot of expertise. Get help if
you don’t know how to talk to children. Avoiding children
will not help you or the family. Honesty will.
Involve children’s services and/or child mental health
services when you have concern for the welfare and
mental health of a child. After all a high percentage (80%)
of child mental health problems is associated with
parental mental ill health.
Consider that a parent will be harmed if they are wittingly
or unwittingly harmful to their children.
For parents the right to autonomy also means responsibility
for their child. Without autonomy they cannot easily make a
responsible contribution as a parent.
There is a potential of conflict if for a patient who is a
parent the right to autonomy means that they do whatever
they wish irrespective of the needs of the child. In fact they
are abandoning the parent role and parental responsibility.
The conflict of interest is most usefully seen as being
located within the patient between their desires as a person
and their role as a parent.
A parent’s autonomy is constituted primarily by the security
in their relationship with the child.
There is some weak evidence that the not completely
compliant patient may have a slightly better outcome
overall. Therefore it is good practice to protect the patient’s
autonomy as much as is possible.
Justice derives from the impartial recognition of
needs and meeting them (availability of services).
If the needs of the patient as a person outweigh
the capacity to fulfil the parental role the child
might be removed from the parent. The loss of the
relationship requires attending to the parent’s
need because they have been identified. However
this does not always happen and may constitute an
ethical dilemma for services responsible for the
welfare of the children.
If the children’s needs are not met and there is no
adequate support available to them then it is the
adult professional’s responsibility to take this up.
•
•
•
As long as a family unit is viable any individual’s
needs are to a significant degree constituted by
the interests of the family-as-a-whole.
Individual welfare needs maybe met by supporting
the family.
A family as a whole is more than its constituent
parts.
(1) Family for this context is defined as a group of two or more people
consisting of at least one adult in parental role and one young
person in the role of child, who have a long-term interest in each
other’s welfare.
Whatever happens and whatever you do as a professional, it
will often not be right.
Never expect to have your contribution validated by the
person who suffers PD. Client feedback is crucial but do not
expect it to tell you straight whether you got it right.
Your validation of other people’s experiences, however, can be
a crucial contribution – the principle is that anything can be
understood and it is worth understanding. A parent that feels
understood might be more inclined to work on understanding
the child.
Motivation issues are never straight-forward: treatmentseeking vs. treatment-rejecting PD (Tyrer et al. 2003a);
When the therapeutic or supportive work seems to be going
really well it probably is too good to be true and both you
and your client might be well advised to be prepared for
your collaboration to be seriously tested.
Ground rules:
It follows from the ‘Family Interest Principle’ that any
professional who is involved with one member of a family
has a duty and right to consider the welfare of the family as
a whole, take appropriate action and expect other services
or professionals to be responsive (but not too disappointed
if they are not?).
There is no real alternative to reasonable family life. In case
a family ceases to exist as a physical unit children are
unlikely to move from one family situation straight to
another. Therefore:
33
It might be better to talk about the ‘least detrimental
alternative’ rather than a ‘best interest’.
State intervention can harm children even if they are at
significant risk; decisions to remove children from a family
have to be based on a balance of risk considerations with a
clear understanding of the available alternatives.
Parents and children may feel better if the parent can be helped
to suppresses bad feelings (Chapman et al., 2009). This is
possibly accurate for most types of personality disorders in many
situations (not all!) provided that the parent does feel understood
to some degree.
Parents may be more effective in their parental role if they can
reflect on their actions and relationships, especially with their
child. Ideally this includes an understanding of their child’s view
of the parent.
The main issue: parent’s capacity to be preoccupied with the
child.
Culture of enquiry and participation works better for a parent
than feeling as if on trial through the assessment process
(reinforces defensiveness, negative distortions).
In case of total non-cooperation: work around it with all those
affected (Tyrer et al., 2003b)
Sometimes
expect to find a distortion of family
reality. Example: The father with a paranoid
personality disorder whose family is never
allowed out of the house except for family
outings.
Social inclusion practice:
Attend to exclusion by identity, territory, social attribution,
economic factors, impoverished relationships;
In particular:
Exclusion from meaningful relations: self-self talk can be
reinforcing distortions of the parent’s perception of reality vs.
Self-other talk providing for correcting influences on
distortions of reality.
Are our services good enough?
Collaboration/cooperation (very complex affair!)
Model-based psychotherapy (i.e. faith-based?)
Baby P. – Are service structures and knowledge base
adequate? Child protection is essentially an adult mental
health issue!
34
Asen, E. & Schuff, H. (2004) Assessment and treatment issues when parents have a
personality disorder. In: M. Göpfert, J. Webster, M.V. Seeman, eds. Parental psychiatric disorder,
2nd ed. Cambridge, CUP.
Bowlby J [1969] (1999). Attachment, 2nd edition, Attachment and Loss (vol. 1), New York:
Basic Books.
Bowlby, J (1988) A secure base : parent-child attachment and healthy human development.
New York, Basic Books.
Chapman, AL, Rosenthal, Z., Leung, DW (2009) Emotion suppression in borderline personality
disorder: an experience sampling study. J. Personality Disorder, 23 (1) 29-47.
Hill, J. (2004) Parental psychiatric disorder and attachment. In: M. Göpfert, J. Webster, MV
Seeman eds. Parental psychiatric disorder, 2nd ed. Cambridge, CUP.
Sauer S. & Baer, RA (2009) Relationship between thought suppression and symptoms of
borderline personality disorder. J. Personality Disorder, 23 (1) 28-61.
Tyrer, P, Mitchard, S, Methuen, C, Ranger, M (2003a) Treatment rejecting and treatment
seeking personality disorders: type R and type S. J Personality Disorder, 17 (3) 263-268.
Tyrer, P, Sensky, T, Mitchard, S (2003b) Principles of nidotherapy in the treatment of persistent
mental and personality disorders. Psychotherapy and Psychosomatics, 72, 350-356.
van den Bos, A. & Stapel, D.A. (2009) Why people stereotype affects how they stereotype: The
differential influence of comprehension goals and self-enhancement goals on stereotyping.
Personality and Social Psychology Bulletin, 35 (1) 101-113.
The Challenge Of Caring For Personality Disordered Parents
Dr Aggrey Burke - St George’s University, London
Notes by Alleyn Wilson
Dr Burke started his presentation by stating that many people who are seen in clinics
or because of child protection procedures have a borderline personality disorder (
BPD), a conduct disorder or a mixed disorder including histrionic, narcissistic and
dependant personalities.
The issue for a specialist community service is one of managing risk especially for the
children of mothers with BPD. The challenge is what to do to manage their care and
how to protect their children.
He sees the target population as coming from some estates and disorganised
homes and considered that the circumstances of the Baby Peter case was not at all
uncommon but that Haringey had been unlucky. PD is a very common component
amongst mothers where child protection is involved and is more common than
psychosis. His slides demonstrate PD amongst mothers in relation to other adversities
in childhood (e.g. brought up in care). Dr Burke showed many slides from his
research .These clearly show the factors experienced by mothers of children subject
to child protection.
Some of the consequences of PD amongst mothers is that they tend to have their
children younger, tend to self harm, have recent experience of domestic violence
and substance misuse and are potentially chaotic or out of control. Many parents
have experience of all these factors and may well have been in care themselves. This
has an overwhelming effect on the difficulties of attachment, child caring and the
possibility of child protection processes. Since many children of mothers with PD have
themselves been subject to these same factors, he was able to demonstrate the cycle
of PD amongst mothers, poor childcare and subsequent PD amongst their children.
Alternatively, children who are removed from their home environment are also likely
to develop PD.
Dr Burke showed that the strategies to avert a tragedy like Baby Peter were limited
and queried whether having a mother with PD or removal from home is more
destructive for the child. The options to manage the risk of child care are: to look
after a child, not to look after a child, to “permit” known abuse, or to try to reduce
arousal in the mother by medicating her so perhaps she feels more caring.
Dr Burke concluded that the strategies for caring for people who have PD and are
parents are not only limited but may not be either always the right decision or
acceptable to the public.
Following his presentation, Dr Burke entered some discussion with the audience:
• Judges have a difficult time when there are child protection issues and this
is compounded by inequalities in the social system and the backgrounds of
people, so how can we mitigate this?
Dr Burke said that philosophical issues are very difficult to research but we need
to be clear about the “rules” of social environments and follow these, so we do
need to learn more about how society is structured and how social rules are
being followed.
• How can we support mothers as “primary care givers” when they are not
actually the care giver? The example of wide family networks amongst some
ethnic minority communities was given as a way to spread the care.
Dr Burke responded by saying that this raised the possibility of looking to
reduce inequalities in a way not usually available for this group of mothers.
There was some potential for learning more about family support for mothers
with PD in this context.
35
• It was queried how many mothers who went through the criminal justice
system did not have a diagnosis of PD but would have had if they had been
in the mental health system. Dr Burke thought this was true and that it could
indicate that his figures would be even higher than shown in his research slides.
It was generally acknowledged by the audience that many people with a diagnosis of
PD or BPD have many assets and professionals need to find these and work with them
to the benefit of parents and their children.
Personality disorder, temperament, and childhood adversity:
findings from a cohort of prisoners in England and Wales Authors: Amanda Roberts a; Min Yang b; Tianqiang Zhang b; Jeremy Coid
Affiliations: a School of Psychology, University of East London,
London, UK
b
Forensic Psychiatry Research Unit, St Bartholomew’s
Hospital, London, UK
DOI: 10.1080/14789940801936597
Publication Frequency: 6 issues per year
b
Journal of Forensic Psychiatry & Psychology, Volume 19, Issue 4
Published in:
December 2008 , pages 460 - 483
Abstract
Adverse childhood experiences and childhood temperamental features
are known to contribute to the development of personality disorder.
The aim of this study was to examine associations between personality
disorder, childhood temperament, adverse childhood experiences,
and victimisation. The Prisoner Cohort Study was carried out as part
of the dangerous and severe personality disorder (DSPD) service
development programme commissioned by the Home Office. The
study comprised 1396 male offenders interviewed with the Structured
Clinical Interview (SCID II) to diagnose personality disorders in
addition to reveal self-reported experiences of childhood victimisation
and disadvantage. Independent and joint relationships were examined
between reported temperament and adverse childhood experiences
and Axis II disorders measured at interview. Prisoners with personality
disorder reported adverse childhood experiences and victimisation
more frequently than those with no personality disorder. Different
childhood experiences were interrelated with specific personality
disorder categories. Associations between temperamental features and
specific personality disorders were increased by the addition of adverse
childhood experiences (joint effects). A difficult temperament and
childhood adversity increase the likelihood of personality disorder in
prisoners and may be risk factors to target for future early intervention
36
PARENTAL MENTAL HEALTH
STUDY DAY
The range of personality disorders
among parents in child protection
• Borderline personality disorder
(female:male 3:1)-half of all cases
• Disorders associated with conduct
disorder or/and violence (male excess)
• Other personality disorders including
mixed states
PARENTING FOR PARENTHOOD
THE CHALLENGE OF CARING FOR
PERSONALITY DISORDERED PARENTS
AGGREY BURKE
ST GEORGE’S UNIVERSITY LONDON
Managing Risk in a Specialist
Community Service for Parents
Target Population & Implications
• The Primary carers
The good-enough mother-provides the
holding environment (Winnicott. D
(1896-1901)
The Partners of the Primary carers
The children & step-children of the
Primary carers
• When things go wrong-dimensions of risk
• Child protection- abuse/neglect, exposure
to domestic violence, abandonment
• The question of psychotic mental illness
• Dangerous levels of arousal/anxiety/anger
• Co-existing substance abuse
• Suicidal behaviour
Rates of personality disorders
among parents: A study
Diagnostic distribution among
mothers
• Retrospective findings among almost 400
consecutive assessments in child-care
proceedings (three-quarters, mothers)
• Psychiatric diagnoses:PD -a half (one in five psychotic)
Psychosis with no PD –a quarter
No PD no psychosis –a quarter
37
How many children return home to
their mothers?
The backgrounds of the patient
samples(PD & Psychotics)
Childhood adversities** included in
this study
Childhood adversity among PD
sub-samples
•
•
•
•
Parent not known
Any step-parent
Brought up “In-care” (PD:Psychosis 5:1)
Any reported abuse (physical,
sexual,parental domestic violence)
**See Afifi et al.(2008) Am J Public Health
98,946-52
Interaction nature and nurture
Lower rates among psychotics
Consequences of mothers suffering
from a PD diagnosis
38
Consequences of mothers suffering
from a PD diagnosis
Consequences of suffering from a
PD diagnosis (mothers)
Substance abuse disorder and
diagnosis among mothers
Feelings of being disturbed
(confused & out of control/chaotic)
Psychiatric problems among the
partners of the primary carers
The concept of a family–how close
is the mother to her own mother?
39
Agony & alienation- mother’s recall
of abuse/near death experiences
From “early-on” Mothers with PD
are “over-loaded” with no-one to
turn to
Severe child “abuse” by carers
The rationale for proceedings
The horror of losing a child in
proceedings –”the one who cared”
Interventions likely to avert tragedy
To be or not to be
Strategies
• To be Looked-after or Not
• To undo abuse or not
• To reduce arousal or not
•
•
•
•
•
40
Prevent child-abuse
Prevent domestic violence
Prevent illicit substance abuse
Prevent “abandonment”
Enhance the mother’s feeling of being the
primary carer even if the child has be
cared for by an alternative carer
A Systemic Approach To Working With Parents With Personality
Disorders
A joint presentation by David Bailey, NW London Mental Health Trust
Parental Mental Health Service, and Ellen Mark, NSPCC Manager of Parental
Mental Health Service in West London
Notes by Alleyn Wilson
The service: David started this session by explaining that this service was an
extension of CAMHS (Child and Adolescent Mental Health Service) and had been
developed to “bridge gaps” between established services. It operates by linking
people who use or are in contact with other services. He emphasised that this was
just the way his Trust did the work and there may be other models.
Ellen then added that It had been operational for 9 years and covers North Kensington
in partnership with the NSPCC (National Society for the Prevention of Cruelty to
Children). The scheme has found that some professionals and parents respond well
to the involvement of the NSPCC because whilst there are child protection issues in
reality it is also used to provide family support. The Parental Mental Health Service
(PMH) is therefore a combination in which the North West London Mental health Trust
(NWLMHT) provides medical care and therapy whilst the NSPCC provides social work
with children and their families and child protection. Both partners share a building
which is based within the mainstream CAMHS service which is itself based within
Adult Psychotherapy services of the NWLMHT.
The NSPCC offers other services as well but works directly with the PMH in this colocation for 2 days per week. It started as a bridge to bring together Adult mental
health services, CAMHS and PD (personality disorder) services.
The remit of the PMH service developed out of a research trial in Brent which showed
that parents’ mental health impacts on their family and therefore there was a need
to work closely with adult mental health services who are statutorily responsible for
adults. Not everyone highlighted in the research was involved with a community
service or a CMHT (Community Mental Health Team) but very many were. The
different service cultures were noted and the new PMH service was developed to
directly support families and to interact between the exiting services rather than to
replace them.
Who is seen in PMH: People who are seen by the PMH team have a variety of
diagnoses, including a diagnosis of personality disorder. The team holds a weekly
multi disciplinary team meeting which is attended by a range of professionals such
as social workers from adult services and NSPCC, health visitors, teachers, the PMH
team and of course the service users (parents) themselves
The interface of the different strands of PMH allows people to be seen as parents
whereas before this had not been directly part of the work of single issue /needs
agencies and parents’ many strengths had been missed .It is therefore very
important to make a full assessment of the parents’ needs and strengths and this
can be done better as a combined service rather than by any agency individually.
This joint working confirms what can be done for parents and helps them to access
other services better because of those agencies’ liaison and understanding of each
other. The PMH service alone would not be enough for very vulnerable families who
are known to many agencies. Those agencies have to get over their own jargon and
exclusive language to converse meaningfully with each other. For example head
teachers and nurses from a CMHT may speak differently about their concerns for a
family.
41
Referrals: These mainly come from the CMHT but over half do come from other
sources. This tends to broaden the network of services working together, especially
for those families whose problems may not justify being worked with by a single
agency yet have complex needs. Engaging families and assessment is undertaken
with a view to breaking down service boundaries and reducing criteria which exclude.
The PMH service has an open door policy. This is partly to try and reduce the level of
stress to any participating family as they can see someone quickly and can always
come back easily without having to wait for an appointment.
The PMH service sees itself as having responsibilities for both mental health and
child protection albeit the final statutory duty may lie with another agency. Clear
communications between agencies and a clear understanding of each others’ roles
helps to this end.
Parents’ therapy: This is offered to parents in their own right and includes
developing an understanding of the impact of their illness on their children and on
their parenting. Open dialogue between children and their parents is encouraged and
this is often done by enabling children to ask questions of their parents and helping
parents to answer these. For example, when you are sad, what do you need? What
helps you to feel more competent when you are parenting? Parents are given space
to talk about being a parent and what they would want for themselves and their child.
This often leads to conversations about guilt, shame etc but in a way to support their
parenting and not in a way to apportion blame.
Working with children: children are seen individually. Parents can be seen
individually and also with the total family. Children are given a very direct approach
and it is believed that even very young children are aware of what is going on for
their parents. The PMH service takes an active interest in the child and in what it is
like for them at home .The PMH service also may coordinate with any professionals
working with the parents so that all agencies are working together. Children have
direct play and art therapy and opportunities for discussion aimed at helping them
to understand their parents’ health problems. Whilst this may not help all children or
even all of them all of the time, it does help many children and most at least some of
the time
The audience then put some questions to the joint presenters.
Q 1 Is this a managed clinical network?
A. The presenters thought this was probably true and told us that during their work
they thought long and hard about how they were perceived by others in their network
including the families they work with. However, they were not sure if the PMH was
quite the same as a managed clinical network as it is based in a clinic and the wider
contacts were hard to manage as they depend on trust and communication rather
than an actual entity .It needs a lot of effort to enable such contacts to happen and
continue. The PMH service is actively managed in order to make relationships work
and to enable” translation” between different departments.
Q 2. If you were not doing this, would this networking and liaison exist?
A. Absolutely not, was the agreed answer from both presenters
Q 3.Safeguarding through working was always a cause for concern, how does the
service work with this uncertainty?
A . There is a need to be very clear with the family and others as to boundaries and
42
that the PMH service does not replace statutory services or statutory responsibilities
David felt they were lucky that the Borough is well resourced and this enables them
to be open in their thinking about issues such as the emotional needs of children
beyond stark child protection. He acknowledged that other Boroughs may not have
the resources for this and may have to concentrate on physical care alone.
Q 4.Do you have concerns about what would happen if you do nothing now and also
about the impact of commissioning on future parents and children?
A. The prevention argument is always difficult and can be a leap of faith for providing
services now to reduce costs and needs in the future. Service providers need to
have continual discussions with commissioners and once commissioners start to
support your reasoning and maybe provide some money for a service then that gives
permission for others to hear the message too. David repeated that they had been
very fortunate to be well supported and resourced.
Q 5.Do the needs of children override those of the parents?
A. Yes. This is made very clear to parents and also to the relevant agencies that work
together. However this is not usually a problem and is accepted by all agencies.
David and Ellen finished their presentation with a quotation from the childcare expert
Dr.John Bowlby:
“If we value our children we must cherish their parents.”
43
Personality Disorders and the Family - What Services?
Deborah Rutter, Senior Research Analyst - SCIE
Personality Disorder & the Family:
What services?
Why should PD services be important to
families?
1. What can we learn from the pilot community
services about supporting families affected by
PD?
2. What do we need to consider when thinking
about PD services for families?
3. What’s on our wishlist?
Most people live in families at some time
Attachment disorders (basis of PD) in parents
Deborah Rutter
Snr Research Analyst, SCIE
4)
5)
the interests of adults & children (eg adult mental
health services)
People with PD have strengths, insights &
capacities that are wasted
Provide a clear description of the services
To examine the way they are organised and what
they do
To compare their formal and informal structures
and care pathways
To explore the impact of specialist services on
other services and on the health and social
function of people who use them….
…AND on the staff that provide the services
Cambridge Peterborough
Specialist teams and user
support workers
Day care and support
network in
Nottinghamshire
Expansion of
voluntary sector
support services
in Essex
Thames Valley Expansion of TC,
psychotherapy
DDART – OP DBT / CBT
for people with dual
diagnosis
Youth workers providing
Early intervention in Plymouth
Intensive case management (everything!)
Psychological programmes (substance misuse;
social problem solving; CBT coping)
Therapeutic communities (sessional, in school
Primary care workers
central London
SUN (Service user network)
in South West London
Priorities for Service Outcomes:
Group differences
Types of PD pilot services
Case management
team in Leeds
Day care and
outreach in
Coventry
To evaluate the 11 pilot services & use findings as basis for
development of future services for people with PD
3)
lives
The way services are organised tends to divide
Two day TCs in Cumbria
1)
2)
affect ability to parent = possible ‘transmission’
PD affects all relationships and all aspects of
hours): high user input
User-led networks, offering social, therapeutic &
practical support
Primary-care based ‘back to work’ support
Early intervention: street-level advice for young
people
44
Researchers
Service
Providers
Service users
Quality of life
Social functioning Quality of life
Social
functioning
Quality of life
Mental distress
Impulsive
behaviour
Impulsive
behaviour
Impulsive
behaviour
Use of IP care
Use of IP care
Social functioning
Mental distress
Mental distress
User Satisfaction
User Satisfaction
User Satisfaction
Use of IP care
#.*-.!!)
Some issues for PD pilot services
Reduction of stigma (not in MH service)
Easy access: diagnosis/referral not always
.**.#$-1*,&
Personal qualities, inclusive & non-judgmental
attitude
required
Welcoming for people previously excluded or
derided
Staff & other users willing to engage in ‘difficult
areas’ (including self-harm): not freaked
Embedding but containing user support: cheap
but often seen as ‘risky’ by statutory services &
may involve risks for users
Realism in relation to what is achievable
What do we want for our family PD services?
Just in case you are interested….
(‘rescuers/controllers’ should not apply)
Ability to recognise & reflect on their own
Accessibility for all?
Tiers - different levels of intensity for different
limitations (not knowing what to do; knowing
what will push their emotional buttons)
Staff on the same continuum as users
Ability to ‘keep it real’ but ‘detached’
A life beyond work!
,1!*,/.. ,,$ .'
3 ,)$)".# ' --*)-(/'.$( .#*
0'/.$*)*!*((/)$.2- - ,0$ -!*,
+ *+' 1$.#+ ,-*)'$.2$-*, ,4
#..+111-*)$#,/&!$' -
+,*% .
!$)', +*,.+!
families?
A range of approaches?
Who are we targeting: individuals, families,
children/young people (inc. young carers)?
How do we help people to help themselves &
each other? (Peer support)
Can/should we piggy-back Family Intervention
Projects?
45
Service user/professional relationships: discussing real life
examples.
Led by Michael Gopfert.
Notes: Bob Hill
Michael introduced himself explaining that he, from a very young age was interested
in issues around personality disorder. He initially trained to work as an adult
psychiatrist but became aware of some of limitation due to issues around professional
boundaries. He then re-trained to work in the arena of child psychiatry and continues
in this field working both with the young person and their family. He explained that if
he had known more about psychology earlier he may have gone down that route.
After this brief introduction he asked the group to break up into small groups and to
look at particular cases they were involved in and to consider strengths and dilemmas
that can arise within the support systems available.
The feedback was:
Dilemmas
Good things
- emotional blackmail
- being sucked in
- conflict. Parent saying go away,
agencies wanting change.
- If things go wrong they get really
messy
-
-
-
-
supervision
supported!
change, even if gives inspiration
Patient gaining insight into self
management.
Michael commented that we initially were presenting dilemmas, which are why they
are presented first and only then did we come forward with the good things.
When talking about supervision this included positive issues around supervision
and support to the person/family living with personality disorder. We acknowledged
comments made earlier in the day for the need for long term involvement and
recognised that often what happens is that those who should be supporting often are
involved in crises intervention. Only being involved at times of crisis. Professionals
also felt that their own support and supervision followed a similar pattern and we
questioned how supervision/support can be achieved. Line managers have a role
but so does the person/family, impacted by personality disorder, and the wider
professional group involved.
Michael then raised the issues around how the two P’s, parents and personality
disorder, are not talked about together. This was exampled in the fist session
of the day when we heard from Nick Benefield in his key note presentation. It
was acknowledged that there had been some reference to family and that this
had possibly not been developed as much as Nick may have wished due to time
constraints. It was acknowledged by the group that we cannot afford to loose sight
of the family and especially children whose parents have been diagnosed with
personality disorder.
Michael questioned an issue that had been raised earlier about the definition of
borderline and talked a little about the differences between neurosis and psychosis.
The untreatable and the not understood.
46
Michael also talked a little about the language. How personality disorder was often
seen negatively while this is often avoided in other countries by the use of personality
disturbance.
He talked a little about how personality disorder can be broken down to two groups:
Treatment seekers—Treatment avoiders, Tyer et al in 2003, and the potential
impact upon how we work with each group. It was acknowledged that both brought
significant potential difficulties although agencies often found the treatment avoiders
more problematic to engage. While looking at a particular case, concerns were
expressed about how many different people were involved and considered how this
could be managed and co-ordinated. We also considered how the family may feel
and the potential conflicts that may arise for the family in meeting so many different
professionals.
We again broke into our small groups to consider the implications of this concept and
if we felt the examples we had been considering were either seekers or avoiders. And
to consider what works.
What works?
- avoid own issue.
- seek: “Treatment” of child
- problem: of collusion
o cognence
o honesty
- consistency
- warmth
- manage our own difficult feelings
- practical help
- gathering detailed history
- joined up assessments, multidisciplinary and jointly to try and avoid constant
repetition.
- motivation
- understanding parent, child and their relationship
- avoid reproducing the situation/events that led to personality disorder.
47
The early parent infant relationship: possible difficulties for
personality disordered parents and their infants
Tessa Baradon, Anna Freud Centre
Notes: Terry Bamford
Over thirty people squeezed into the room to hear Tessa. They had the benefit
of being able to view some of the video material (The Breast Crawl, Johnson and
Johnson) referred to by Art 0’Malley in the earlier plenary when technology defeated
his ability to display the material.
Tessa said that her work is aimed at helping people to make meaning of their
experiences, including their understanding of others. Her work is with infants and
their parents. Brain development is fastest in the first 3 years of life and it is possible
to measure the degree of attachment at 12 months - including on a cross cultural
basis – with consistency over time. That was why early intervention is so important.
In infancy the child is in a particular state of dependence. Work is aimed at
increasing sensitivity to the needs of the infant, as communicated by the infant and
responded to by the mother who imagines through identification what he is feeling.
She showed a film of the breast crawl in which 10 minutes after birth a baby was
shown seeking the nipple. The mother offered her body and her warmth to the baby,
allowing him to create/discover her nipple and her face in tandem. But if mother is
depressed or anxious her needs may override the baby’s, affecting the developing
attachment. E.g. it can be an intrusion when the mother is unable to wait for the
baby to suckle.
Tessa showed another extract from a study of interaction between a 7 day old
baby and his grandfather. Baby and grandfather followed each other’s cues, and
there were signs of response from the baby laughing and puckering his face. It
was essential for grandfather to move at the pace of the infant. When his grandson
needed periods of rest from ‘carrying on the conversation’ his grandfather waited,
and this is very important for emotional regulation.
Another video was shown of a 12 day old baby crying loudly. The noise clearly
indicated distress. After a while his mother gathered him up and attended to his
distress, and he was quickly consoled. Mothers respond differently to variations in
the crying of their babies. They may be concerned, impatient, feel criticised by the
crying (I’m not a good mother), distressed.
What affects the way in which children develop in later life? Early experiences
were encoded on the baby’s procedural mental map. Trauma comes from being
left for prolonged periods in a state of extreme negative emotion without ‘repair’.
Children who are brought up in an environment where the parental preoccupations
are withdrawn from the child are likely to have their development impaired. The
emotional state of parents is a critical factor in the quality of the baby’s experience
within this primary relationship.
Most parents do their best and develop empathy with their babies. But where there
are difficulties it was necessary to ask what the baby means to the mother. For
example, there may be ‘ghosts in the nursery’ from the parent’s past, the birth could
have been traumatic e.g. bringing to the forefront memories of childhood abuse.
Where children were born as a result of rape or sexual violence it can be difficult
for the parent to lose the association of the baby with the event. A lack of partner
48
support following the birth could affect the way in which mother felt about the baby
and support may be needed from neighbours, friends and from professionals to help
parents.
The presentation sparked many questions from the fully engaged group but time
intervened leaving many hoping for a repeat session on another occasion.
49
An Infant-led Approach to Problems in Infancy and Early
Childhood Incorporating Parental Trauma Clinic
Infant mental health & EMDR
AGM UK & Ireland EMDR
association MCC 28/03/09
An infant-led approach to
problems in infancy and early
Childhood incorporating parental
trauma clinic
Dr Art O’Malley Dr Sheena Pollet &
Thelma Osborn
Attended workshop Nov 29-30 hosted by
Mirek Lojkasek co-author of manual with
Elizabeth Muir and Nancy Cohen (Toronto)
Along with Thelma Osborn specialist Health
Visitor in maternal mental health we decided
to pilot a watch wait and wonder clinic in
Halton General Hospital where we have seen
20 mother-infant dyads since Jan 08
operating 1 session per week from 1-5pm
Infant
Many childhood problems result from insecure
attachments in infancy (Greenberg 1997)
Brain development dependent on infants’
emotional and physical experiences within the
attachment relationship with the primary
caregiver during first 24 months of life (Perry
1994, Schore 1995)
Conditions for secure
attachment - mother
Rationale for early
intervention
Working with troubled parentchild relationships
Doesn’t talk about problem
Doesn’t form therapeutic alliance
No capacity for insight
? Suitable for psychotherapy
Within www seen as active agents of
change
Implications of secure
attachment in the infant
Accurate perception of infant cues
Responds sensitively to infant
Frequent displays of affection
Acceptance of behaviours and feelings
of infant
Caregiver is both emotionally and
physically present when infant is
distressed or exploring its environment
50
Behaviour and emotions are regulated
Sense of self emerges
Freedom for curiosity and exploration
Developing competence in language
and cognitive potential
Capacity to relate to others
Capacity to parent in future
Babies
INSECURE BABIES
Individual differences contribute to the
relationship
Temperament, fit, expectation
(conscious and unconscious)
SECURE Babies
Explore freely and seek contact with
attachment figure as required
Do not have any consistent strategy to
elicit care when distressed
Occurs when primary caregiver is also
the source of abuse, trauma and
neglect
www sessions
Infant-led activity
Provide emotional and physical access to
mother
Focus on the mother’s responsiveness to the
infant’s behavioural and emotional signals
Place mother availably BUT non-intrusively
Provide a space to allow the infant to work
through relational struggles through play and
interaction with their mother
Therapist must act as a secure base for the
dyad
www rules
Average of 15 sessions (8-18)
Once a week for 1 hour
2 parts
Preoccupied with the unpredictable
availability of their inconsistent caregiver.
Make either repeatedly high intensity
demands to elicit some attention or are
extremely clingy
To be consistent with attachment
theory an intervention must:
Do not show their attachment needs so as
to avoid rejection
Ambivalent
DISORGANIZED BABIES
Avoidant
No hitting or endangering infant
No breaking things or leaving room
Therapist may ask only relational questions
Play component where infant leads and developmental
stages are allowed to occur. Attachment relationship is
built upon.
Discussion of play and reflection on inner world of
infant and parent’s own inner world
51
What did you observe?
What was your infant’s experience?
What was play about?
What was your own experience, thoughts &
feelings?
Instructions for www
Instructions continued
Get down on the floor with your baby
Infant has physical access and can play and
interact in a spontaneous way in the mother’s
attentive presence
Expect this to improve infant’s attachment,
capacity to explore and increase sense of efficacy
and sense of self
Mother becomes anxious as less able to restrict
and shape her child’s behaviour and interactions
Instructions
Key areas for improvement
Important not to instruct, prohibit or show
displeasure with your infant’s activity
Although toys are provided, infant neither has
to play or even be active
Therapist will sit to the side and share the
experience but will neither intrude nor
interact - to maximise the special time
together (lasts for 20-30 minutes)
Setting up the clinic
Follow your child’s lead, letting them
take the initiative at all times
Avoid the compulsion to initiate
activities yourself
When your infant initiates an interaction
respond but keep the infant’s agenda in
mind i.e. be guided by what you think
your infant wants
Reduction in symptoms
Improvements in mother-infant
relationship
Improved infant competence in
relationships
Lessening of maternal distress
Increased maternal confidence in
relation to her infant
Case examples
Suite with audio-video facilities
Age-appropriate toys – not too many
Mat
Regular weekly day & time
Helps to have second room
52
‘Ellie’ aged 2
‘Jordan’ aged 22
History of DSH, Drugs and alcohol, poor
attachment (spent 4 months away from
child in first year)
Now 30 weeks pregnant & alcohol-free
window of opportunity to intervene
before birth
Developmental history
Assessment Sessions
Father schizophrenia caused NAI
Sexual abuse age 9-14
Mother left age 9
DSH age 13
Jordan loves her Dad
Siblings adopted away
Long history of contact with C/AMHS
Infant-led Play Assessment
Session 1
Get down on floor
I’ll ask you to do something difficult
Let your child play
Follow child’s lead
Avoid instructing and initiating
Keep safe
Formulation & feedback
Session 2
Assessment for whole family
Presenting problems; their development
Free play assessment – parent & infant
Play as you would at home
Infant-led play assessment
Paralysed
How much longer? What to do? Strange
Taught & initiated for Ellie
She played with lots; doesn’t need me
The phone – like one I had (Dissoc’n?)
Reassurance
Ellie’s Dad involved
Session 3 EMDR
Softened instructions
‘Stay near Ellie’
How much longer?
Tea party; Doll undressing
Toilet, on E’s return, J weeps,
Childhood memories (trauma)
Please practise
53
Explanation of therapeutic rationale
Difficulty in finding imaginary safe place
I won’t be able to bond with my baby
I want him to love me
Sensation of sadness in chest & head
Desensitisation of NC Installation of PC
Body scan
Session 4 and 5
36 weeks ‘show’
Unable to attend
Past term
Baby Zack born; ‘I enjoyed labour.’
‘A lot different to Ellie.’
‘Bonded straight away.- Great!’
‘Fell asleep on my chest.’
Case Example
Developmental history
‘Christine’ first of 13; Hx of abuse (PSE)
9 partner imprisoned. Into full time care at 14
requested by herself (conflict with mother)
PND after ‘John’s’ birth
‘Time for me’ group;Then 16 1:1 sessions
Support partner father down South
Birth Trauma- 3rd degree tear
Session 1
Session 1 22/1/08
Explanation
Free play assessment
Brief infant-led assessment
Delay in speech and language
Gross motor - toe walking
Fine motor - obsession with spinning
Christine feels she is a bad mother for
not bonding with John
Wants to understand him better and
feel closer to him
TO therapist, AOM observer & note
taker
Video facilities but no audio
54
Infant-led play: obsessed with ball and
blinds on window
Christine tended to initiate
John used Christine as an object. Little
evidence of interaction
Repetitive spinning of car wheels, plates
C finds him bewildering & worried about
his behaviour
Session 2 29/1/08
Session 3 05/02/08
Reflection on last week’s session
Instructions repeated
John abnormal play walked in circles no
language little eye contact
Sensory sensitivity: used C like a pillow
Enjoyed tickling more than toys
C feels uneasy and unsure
Session 4 26/02/08
Session 5 4/3/08
Christine said John has been ‘all right’
Observation: more interactive,especially
with yellow helmet interactive game
Used table to prevent access to window
Discussion- ‘He liked it when I looked
silly’, ‘I think he’s enjoying himself’,
‘He’s making more of an effort.’
More distressed initially (had been a
bad week with older son re school)
Attempting to leave room
Started to play with peg board
Despite removal of certain toys,
manages to find things to spin
Next session 1st April 08
Helen 26 Francis 5 Robin 8
months
Formulation
C called to cancel as older son was ill
Phoned both TO and SP
Asked for another appointment
Agreed that we would remove ball,
rings, play dough and any objects which
could be made to spin from the www
clinic room
Evidence of significant delay
Referred to speech therapy and for toe
walking
Unresolved traumatic experiences
especially around birth
Now older son sounds distressed
Coping on own as partner often away
55
Birth trauma Francis born at 29 weeks
Emergency C. Section
In SCBU 8 days only able to view him in
incubator from wheelchair
Robin also born prematurely and now
afraid to let Francis go to school
Received 10 individual CBT sessions
Helen continued
Helen and www
Unable to regulate emotions easily
overwhelmed
Session 1 processing of visual image
from right to left cortex using SMARTER
Session 2 reconnection with sensory
accessed memory of birth
Breastcrawl reflex emotionally cathartic
Summary
Now able to participate with children
Session 1 playing vigorously with ball
and dolls house with Francis Robin
sitting quietly
Session 2 Helen and Francis
Session 3 Helen, Francis & Robin play
calmer less frenetic planned session
using Joan Lovett EMDR protocol
Future plans
Positive feedback from service users
Visibly improved parent-child relation
Good commitment
Opportunity for discussions re needs of
adult carers, infant, other children and
dysfunctional dyadic relationship
Parental trauma!: Combine with EMDR?
Commission service, incl. admin support
Written into job plans
Audio-visual equipment now installed
Groups doing similar work to have
reflective practice supervision
Advanced Training Workshop proposed
Research possibilities Prof Atif Rahman
5 Boroughs Partnership NHS
Trust
Further training
Thelma EMDR level 1
Sheena EMDR level 1
Art Sensorimotor Psychotherapy training
in Lincoln 12 residential days 2008-9
56
John Kelly director of adult and
children’s services nominated our
combined parent-infant mental health
clinic and parental traumatic stress
clinic for a health and social care award
2009…outcome awaited.
Experience Of Parenting Through A Therapeutic Community
Helen Legg And Laura Smith
This was a well attended workshop with people coming from a variety of professions
including from acute and community nursing services, from residential rehabilitation
services, from therapeutic community services, young people’s services, drug and
alcohol services, the voluntary sector including SPN itself, carers, CAMHS, psychology
and psychiatry.
Apart from the presenters, no one identified themselves as a service user.
The workshop was a highly personal description of service user experience and was
very powerful.
Helen and Laura started by describing what they had experienced as members of a
Therapeutic Community.
This was for people with a diagnosis of personality disorder ( or with complex needs
and disorders) and was a “Living Learning Experience” including cooking, eating,
therapeutic activities and ” being together” in activities such as psycho drama,
psychotherapeutic and creative groups – all the work had a focus on developing
relationships.
The Therapeutic Community Helen and Laura had attended was in Oxfordshire and
they went for 4 ½ days per week for 18 months. It was not residential but was
intensive and felt like a “school programme” in terms of the hours in each day and
because each day it started and closed with a group. Staff had a mixed background (
social workers, CPNs ,psychology and psychiatry). All approaches and therapies were
available, each with a different aspect and none making one feel labelled.
They then gave a little of their own history and journey towards the Therapeutic
Community. Helen had been in mental health services for 20 years but she became
more unwell following the birth of her first child. This brought into focus her
own childhood and intensified her feelings and beliefs which became even more
unmanageable with the birth of her second child. She described how she was terrified
of her own children and would do anything to get away from them. As this included
for example, sending them to school, she was not seen by Social Services as
needing help or support with her child care. Laura had been in services before she
was pregnant but she experienced a chaotic and disruptive lifestyle. This escalated
with the birth of her son and she had no insight into her increasingly self-destructive
behaviour.
In the Therapeutic Community, where Helen and Laura met and formed a friendship,
they learnt what was happening to themselves internally and how they were reenacting issues from their own upbringing. This clearly affected their parenting.
They learnt to start to trust people in the therapeutic environment and to develop
relationships with people there. This was a new experience for them both.
For Laura, whose son had physical and developmental problems the great variety of
agencies originally involved caused her more chaos but the staff of the Therapeutic
Community showed her how they themselves cared for children and this enabled
Laura and Helen to develop the skills to bring up their children without the risk of reenacting the sort of challenges they themselves had experienced and found to be so
damaging and resulting in their personality disorder/complex needs.
Helen described how the Therapeutic Community improved her parenting capacity
through an understanding of the trauma and rejection she had experienced resulting
in her feeling emotionally younger than her own children and hence being afraid of
them and incapable of good parenting. At the same time she felt in part jealous of
giving care to them as she had not had this herself as a child and still craved it.
They both were firmly of the view that a medical model for their personal challenges
57
was not helpful but felt that a recovery model was more appropriate to the work of
the Therapeutic Community – having to learn to take responsibility for their own
issues and developing an awareness that their own needs as a mother, though real
was less than the needs of their children.
The Therapeutic Community, despite not being residential, also offered some support
given by other members of the group to whom someone stressed could phone in the
evening or weekend. This was managed by the members themselves. All activities
were through group participation and there was no one to one with staff. All members
had to be off medication and the Therapeutic Community helped to support people
who were trying this out and also those trying new ways of coping. For Laura and
Helen this included their parenting.
Now that Helen and Laura have finished at the Therapeutic Community, they do
sessions training professional staff about personality disorder/complex needs and
as Experts by Experience are involved in developing national Personality Disorder
strategy. They are working towards paper qualifications to further their training and
involvement careers.
The workshop then split into two groups - one with each presenter, to discuss how
the description of the Therapeutic Community as experienced by Helen and Laura
and their description of how it had positively affected their parenting, could be used
to consider how to take this back into the working practice of workshop attendees.
This time was also used to ask questions in order to further understand what the
Therapeutic Community had meant for Laura and Helen and how it had affected their
parenting.
• It was discussed if the Therapeutic Community could be more helpful if it was to
involve the whole family .The development of a young carers group attached to
the Community but run by the members supported children but it was queried if
more family involvement could have been beneficial ( although Laura and Helen
having young children were in the minority. )
• There was some discussion about the difficulty of involving people who are
“parents” since this could also mean those who were parents of the attendees
and although family support in the learning process was helpful it could be that
those very parents were the people who were at the centre of the member’s
disorder and so involvement would not be welcomed.
• One of the difficulties was in translating the ethos of the community to everyday
life and services on leaving and it was thought this was a gap but the most
important time was initially at the point of engagement – the potential member
had to be ready to work with their issues and for example therapeutic services
could be rejecting if a person was assessed as being too chaotic. Good initial
engagement improves outcome and prevents early drop out from the service.
Both presenters agreed that more family involvement in the engagement
process would be helpful.
• There was some discussion about the day versus residential model for a
Therapeutic Community. Laura and Helen said that for them the day version
enabled them to maintain contact and involvement with their children which
meant they could try out new coping strategies whilst being supported. They
both felt that the weekends and holidays were problematic as they felt cast
adrift .On the whole though they agreed that for them the model had been
hard but successful. They had to be very committed because of arranging ( and
paying for ) child care whilst attending and had to go from the environment and
work of the Community straight back to their own situation.
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The workshop attendees took away the following main learning points and questions:
• Putting family support in place enables the family to learn boundaries
• Involving attendee’s parents is complex
• What intensity of treatment for the attendee is tolerable for the family?
(how many days, hours etc)
• Engagement and follow up support are both highly important to
“successful” treatment and subsequent parenting
• Professionals need more understanding and insight into parenting
• Parenting courses are only offered to “bad” parents which is stigmatising
– national options are needed
• Early intervention and education about parenting and relationships is
needed.
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Experience Of Parenting Through A Therapeutic Community
Process
Daisy and Fiona
Notes by Alleyn Wilson
About the Therapeutic Community
The workshop presenters started by explaining a little about the history of STARS
(Support, Training And Recovery).This is an initiative of former members of the
Therapeutic Community who present about the TC (Therapeutic Community). They
also explained what it has meant for them.
People who attend the TC have to commit for 18months and before being accepted
into the TC have to be accepted by the existing group. After they have been members
of the TC they have to have a break of at least 6 months and can then become
members of STARS. They meet people who may be reluctant to join the TC. They
explain about it and also offer support and training in their role of “experts by
experience”. They are paid for this and although it is not full time it does help people
who become part of STARS to continue their journey of recovery and gives future
training opportunities such as learning to do presentations.
Daisy explained that there was a “getting ready” group before starting the TC and
this was usually about 4 weeks long. People attend in order to see if the TC suits
them and if they suit the TC. It was also a time to get used to being a member
of a group which is very open, to stop abusing any substances and to come off
prescribed medication with the support of your GP or nurse. Most people who attend
this group do go on to join the TC where they stay on a daily Monday to Friday basis
for 18 months .The TC is based on structured group therapy with approximately 18
,members and about 5 staff members. There is a community meeting at which people
check in as to how they are, formal therapy groups, art groups and a management
group. This latter is for setting boundaries for example. Between groupwork sessions
there is a rota for cooking, gardening and social time .The day runs from 9am to
3.30pm and after that there is telephone support only, from other group members by
phone, and no out of TC social contact between members.
Referrals come directly from the person themselves and from CMHTs (Community
Mental Health Teams) .Some people may be excluded from joining the TC e.g. sex
offenders but there is a plan to set up a service for this group. People who are not
accepted by the TC as members are usually seen as too “chaotic”, not yet ready to be
off medication or not yet able to commit for instance to stop self harming. If a person
joins the TC and then drops out they must wait 6 months before asking to rejoin.
Daisy said it was a “huge commitment but a relief to find herself in the right place
having been bounced through other services”
Talk and discussion
After the presenters had described the TC they experienced, they shared with the
workshop some of their personal histories and experiences which had led to them
being members of the TC. This then became a general discussion about the benefits
of being in a TC and how it could affect parenting skills. The workshop attendees were
very moved by the personal insights of Fiona and Daisy and welcomed their openness
in sharing their own personal stories which enabled a fuller understanding of the
value of a TC to parents.
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There was then discussion about the TC, Daisy and Fiona’s experiences and
parenting
The workshop attendees discussed some of the issues raised by Fiona and Daisy
in relation to caring for children when you have a diagnosis of PD (personality
disorder).
Fiona and Daisy were asked how open they are with their children about their mental
health problems. They said this was difficult but the TC supports them as do other
parents. The TC is thinking of starting a young carers’ support group.
A nurse from the Cassel TC pointed out that patients were not always ill and that
staff were not always well. Her TC has a 12 week assessment process for the whole
family and then treatment could be up to a year.
Funding was mentioned by several people as a big problem.
It was agreed that the first prerequisite for change was a “desire to change” and if a
person was not ready then a TC would not be successful.
It was commented that child protection conferences are not always a useful process
especially as, unlike the TC, the processes are not transparent.
Attendees noted the stigma experienced by people with a diagnosis of PD .e.g.
at Accident and Emergency departments of hospitals following self-harm .It was
noted that there is a great need for education amongst wider health and social care
services. This is in part the role of STARS.
There was discussion about the “diagnosis” of PD and both Daisy and Fiona felt it
had been helpful in getting them treatment and help, but was also stigmatising.
They were not concerned to have the diagnosis removed if they improved and for
some people it was seen as continuing to be helpful. They acknowledged that some
other people were devastated by the diagnosis.
Daisy and Fiona agreed that if you are “bright” you are more likely to get more from
the experience of being in a TC but the group process encourages people to be open
and not intellectualise their problems so self awareness was the most important
aspect of learning.
Asked if people with PD could recover, Daisy and Fiona agreed that there would
always be a need for them to have less stress in their lifestyle and to look after
themselves now they had learnt more about themselves. Members of the TC had
to learn to prioritise positive self care and this would help also with their parenting
skills.
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NSPCC SMART group working with children whose parents use
substances
Tim Richardson, NSPCC
Notes Vicky Nicholls
The SMART group works with children of parents who use drugs or alcohol. The name
came from group members. The group worked together to come up with a name
that wouldn’t be stigmatising when they said to schoolmates where they were going.
Groups so far have worked with children whose parents misuse drugs or alcohol, but
this year a pilot service is being set up in Leeds to work with children of parents with
personality disorders, applying the lessons learned from the SMART group experience.
Children in the group are aged 7 –11. They are referred in different ways, but the
team always work with parental consent. They try and have children of similar ages
and understanding. Have to be aware of cultural effects of being in the group eg. if
several teenage lads are interested in smoking, others will get into it too.
Sessions include looking at children’s support and family networks, managing
challenging emotions. They have a right to be angry it’s not about putting a lid
on feelings but about learning ways to be angry that leave the young person safe
afterwards.
Have to ask the question of whether doing something will make a positive difference
before doing it. Also workers need to keep it real re attachment theory – if child is in
classroom and parent at home and the child doesn’t know what the parent is doing,
they are not in a position to learn or concentrate. If the person is lost what can help?
A map – they won’t be less lost but they’ll have a frame, and would want someone to
go with them. This is what SMART group involvement aims to provide.
The way the SMART groups in to meet weekly for 6 months, beginning with structured
groups then moving into semi-structured groups, then it remains open for members
to keep going if they choose to. A 12-week course wouldn’t be acceptable, it would
just be tooling the children up to go back to the same situation.
Tim showed participants some moving slides of pictures drawn by children in the
SMART group to represent their home situations. These included images of enormous
empty bottles, spliffs, and one of a bed inside bars. One boy had spent an entire
session writing the word ‘worried’ in very large letters on a pictured wall.
Cleaver et al said that as professionals we focus on the mothers and what they should
be doing. Dads are less there in children’s pictures. One participant asked what
about fun? Often children in families like these don’t know how to have fun – have
permission to be happy in the group, kick a ball about outside, play.
Other services work in parallel rather than dovetailed. Workers can say to the
children here are the networks you can go to if you’re scared. The ‘SKILL’ programme
(‘supporting kids in living life’) works in schools with young people identified as acting
out, aims to give them better coping strategies.
The models being set up in Leeds managed pd network are already there around
parents, hope is that NSPCC will be the last piece of the jigsaw.
Tim went on to describe the evaluation of a similar group in which all three sides of
the triad – mother – father – child – were interviewed. This found that relationships
worked best where the children did a lot in the home but the parents made the
decisions.
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With regard to attachment theory, Tim has moved, with many others, from seeing
age 0 –3 as being the pattern for all life attachments, to a more fluid version, a
maturational model. The child can form an attachment later on, this may be to the
team or a team member rather than mum or dad if they meet suitable attachment
figures. Two participants drew attention to research showing that children who have
parents with mental health problems or using drugs, fare much better if there is one
significant person who has listened to them (a key confidant).
The workshop concluded with a discussion including different service patterns for
working with families where parents have personality disorder difficulties, for example
Bradford, where there are two dual diagnosis nurses in the CMHT.
Webster-Stratton parenting programme is useful for work with parents in this
category. It looks at the consequences of behaviour – if you do x then y will
happen. It has been used, with lots of support available between sessions including
psychotherapy, with very good outcomes at the Red House in Manchester, which
works specifically with parents with personality disorders.
Tim thanks everyone for coming and the workshop ended.
63
Working with parents with personality disorder: impact on
professionals
Minna Daum, The Anna Freud Centre
Notes Judy Foster
Minna explained that she wanted to focus on whit it is like to be with parents with a
personality disorder and how it can compromise one’s capacity to think. Personality
disorder is a disorder of social relationships. It is not now a diagnosis for exclusion
from treatment. Parents have had traumatic backgrounds where they have not been
held in mind. They therefore feel unsafe in all their relationships. It is therefore a
HUGE challenge to become a parent and enter a relationship that they cannot duck
out of or become angry and aggressive in.
Parents react to the dual role of the professionals that become involved. The
‘care’ role can trigger their dependence and subsequent loss of boundaries or
provoke hostility and rejection from them. The ‘authority’ role can make them feel
paranoid and bullied or patronised or alternatively encourage a delinquent response.
Professionals often imagine they are the only person to understand the service user
and fulfil the role they need but then, when inevitably rejected, reject them in turn,
for instance by closing the case.
Early neglect or abuse leaves parents with NO internalised experience of a benign
authority. This leaves the parent with a sense of mistrust towards professionals.
Again the parents can be adept liars, which undermines any relationship with
professionals, who feel disregarded. Persistent lying also encourages the
professionals to introduce more rules and become bullying in their turn. Sometimes
the professional becomes delinquent with them – school attendance is no big deal –
and disregards issues of importance, or colludes with the parent.
It is so important to keep both the parent and the child in mind.
Parents are adept at ‘splitting’ – denigrating some professionals and idealising others
(people with personality disorders find relationships which include mixed feelings
quite intolerable; one can think of a parent’s tendency to ‘split’ as a search for a safe
relationship. The dangers for professionals in this are:
• Collusion (for instance failing to reiterate concerns about the children)
• Plunging into the split
• Denigrating other professionals (as soon as you find yourself doing this, spot
the projection!)
Even appointed Guardians for the child in the court process can get caught up in this
and forget the child.
The principles of case management:
• Maintain a sense of the relational aspects of the parent’s functioning, rather
than simply its phenomenology or clinical features.
• Maintain a position of thoughtfulness in relation to parent and other
professionals, in the face of unthinking ‘acting out’.
The practice of case management:
For the individual
• Consider the meaning of their attachment difficulties – where possible, avoid
64
changing the lead professional
• Supervision – make sure you can discuss and think about your feelings in
relation to working with these parents.
• Relationship with parents – be aware of negative feelings to counteract them.
• Be aware of counter-responses (avoid simply reacting like with like)
For the system
• Encourage integration, coherence, stability and supervision
• Repair splits as they occur. Do not delight in dividing responsibilities and tasks
amongst a large number of professionals.
Questions:
How can we match the therapeutic requirements with the resources available? For
instance we have just heard that the Haven has parents involved for over seven
years, while our Crisis House offers three months support.
In the short term it helps to be in touch with everyone around the case and engage
their brains and emotions. Try to keep reasonable rather than moving into a
defensive response. People do get extra rigid around parents with PD.
What do you do when parents blatantly lie?
Well you can call their bluff but really they need help to build a sense of narrative
about their own lives. You ask them what they think it was like for the other person
(eg keeping young son waiting an hour) but it is painstaking and painful work.
Does current funding make it more difficult to work with these parents?
What is happening is that we are all trying to pick vulnerable children up at an
early stage. Often those at school identified with a ‘conduct disorder’ are at risk of
developing a personality disorder, though here one is at risk of pathologising the
child, as they may grow out of it. Parents often search for a diagnosis (like ADHD)
and CAMHS work on a symptoms-only referral system. Everyone avoids looking at
relationships.
Is PD at one end of the personality spectrum?
We take a functional approach to relationships, but we cannot assume that mum
thinks the same way about a situation as we do. For instance it may be the case that
mum doesn’t know when she is angry and cannot reflect on her own behaviour. She
and the children need help to develop reflective functioning (eg ‘what do you think it
was like for x when you…?’).
65
Psychiatric diagnosis: not reliable/valid
Not a diagnosis for exclusion
Disorder of social relationships
Attachment style expressed in all
relationships
Particular challenge: becoming a parent
CARE
AUTHORITY
Dependent stance
Response: Loss of
boundaries
Paranoid stance
Response: feeling
bullied/patronised/
rejected
Hostile/rejecting stance
Response: reciprocal
hostility
Minna Daum
The Anna Freud Centre
CARE
AUTHORITY
Denigration/idealisation
Search for a safe relationship
Delinquent stance
Response: punitive/
bullying, delinquent,
‘turning a blind eye’
Albert (homeless)
64
43
Dangers for professionals:
Collusion
Plunging into the split
Denigrating other professionals
Richard
22
Jolene
66
Joe
44
Mary
21
Richard
20
Raymond
Stephen
2
Corrado
Pregnancy
Adult
psychiatrist
Birth/early months
Albert
solicitor
Albert
Community nurse
Mary
SureStart
midwife
Mary
Midwife
SW (LD)
SW (c and f)
Corrado
Symbol UK
(LD ass.)
Health visitor
SW c & f
H family: professional
network Drop-in centres
Statutory services
reframed as the
problem and withdraw
Webster Stratton
Other professionals
step in to explain mum’s
anxiety in context of LD
GP
Joe
Mary
A&E
Corrado
Guardian
Professional/s concerned
about mum’s presentation
Paediatrics
Audiology
Respond
(LD)
FSU
H family- pattern over time
ENT
Family support
Health visitor
Alerts statutory
services
Initial assessment related to
risk (as opposed to need)
Further concerns re:
impact on childcare
Mum becomes increasingly
anxious
Nursery
Family support worker
H family: professional
network
Court proceedings
Mum’s solicitor
Maintain a sense of the relational aspects of the
parent’s functioning, rather than simply its
phenomenology
Maintain a position of thoughtfulness in
relation to parent and other professionals, in
the face of unthinking ‘acting out’.
Joe’s solicitor
Joe
Mary
Anna Freud Centre
EP
Adult Psychiatrist
no. 2
Paediatrician
Corrado
SW (child and family)
Guardian
Psychologist
67
INDIVIDUAL
Attachment
Supervision:
relationship with parent
counter-responses
SYSTEM
Integration, coherence, stability, supervision
Repair splits
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PD Knowledge and Understanding Framework development and
materials
Professor Eddie Kane and Sue Imlack
Notes by Vicky Nicholls
Sue explained that she was planning to go through some of the materials that had
been developed for the PD Knowledge and Understanding Framework currently
being rolled out nationally. The aim of the work is to build up a critical mass of
people around the country to deal with pd. There are different levels of training –
the work was funded by DH who wanted an academic spine ‘so we did one!’ There
is thus an MSc designed for people who may want to set up a new service, whose
actual experience is with the individual service user, as well as a basic awareness
programme. Sue trains people in how to use the materials and would usually ask
participants to work them through in a group, but in a brief session with a small
group like this she would talk through the materials for the awareness programme
instead.
The materials are tailored for different groups and have been developed with the
involvement of service users at every stage. They are not just aimed at mental health
professionals, and indeed there is still an issue with CMHTs not wanting to work with
clients with pd. Relevant workers include housing officers, A&E staff, health visitors
and social care staff who may have very little understanding of personality disorders.
A participant asked about the need for top-up training after 12 months, for people
who are keen, for example with CPD recognition. People who have been on training
will have access to discussions forums, a virtual learning environment (VLE), once
there is a group of trained trainers, in order to keep trainers topped up. The KUF is
being built into the Masters for psychologists. Re. psychiatrists four Royal College of
Psychiatrists presidents have agreed the programme but it is still to be cleared by the
ruling Council.
Awareness level training
Most happens through the Internet (VLE). Also three facilitated days to explore the
materials together, ideally with mixed participants but sometimes this work has
to take place on wards as staff can’t get freed up to go to external training. It is
essentially a skills and attitude programme, this time together is needed for people
to be able to voice the prejudices they have built up from their work in pd. The three
days are spread two weeks apart.
The group saw an example of a VLE slide (www.pdkuf.open.ac.uk/mod/oucontent)
Sue or Eddie I can’t get this link to work can you give me the correct address please?
It included 150 video clips of different circumstances, designed to keep people
focussed on the person not the behaviour. During the last day if thinking hasn’t
shifted the group can return to groupwork. People do get excited about the potential
impact of what they have learned in the workplace.
One example video scenario was of a woman behaving in a very agitated way in a
GP surgery when the receptionist did not respond to her forceful request to see the
GP immediately to get her medication. She was sent away without help. Participants
discussed this clip and for several it was a familiar scenario – one person said she
had been more fortunate, had a more understanding response and been asked to
stay by the phone so someone could ring her as quickly as possible. All could see
69
that a greater understanding of what was going on in the woman’s mind would have
helped those around her. There was also discussion of the need for protective screens
for health care staff in case of situations where someone’s behaviour becomes
threatening.
In the training there are labels on the screen which can be used to check people’s
understanding and discuss attitudes.
In another scenario in a prison the prison guard ignored and then faced up a clearly
agitated man who then became increasingly agitated and eventually violent. Easy
from the outside to see that he could have calmed the situation down instead. Eddie
explained that the person in this clip had a negative underlying schema for dealing
with authority which led to his behaviour. He told the group that 70% of people in
prison have a pd diagnosis, a similar proportion in medium secure units. 30 years
ago there was only one place in the whole of the UK for offenders with pd, the only
alternative was prison, so things have improved considerably. The 1983 Mental Health
Act said that if someone wasn’t treatable they should not be detained, this led to a
big reluctance to give a pd diagnosis.
Money from Ministers flows with the diagnosis. There are problems with what the
diagnosis is, but if we don’t look at this we don’t progress.
One participant raised the issue of DSM-V, rumours that they want take out DSPD
because of the problem of a lack of evidence base. Point was made that there are so
many social issues involved, these are not helped by adopting an evidence base. To
become a diagnostic category something has to have a lifelong classification, quite a
few BPD situations appear to change – this could of course be due to misdiagnosis. A
consultation on DSM-V is due in 2010.
Question asked about uptake of course by schools – not much from children’s services
so far but Eddie has met with DCSF to discuss them adapting the Framework.
There can be a situation between schools and parents where each perceives the
other a difficult, as being the problem. Discussion about the importance of early
years’ development and attachment theory. Someone said in situation with figure
of authority they could be thrown back to being eight years old when faced with the
headteacher!
The session ended with Sue and Eddie thanking everyone for taking part.
70
What Can Work As A Therapist From A Systemic Perspective
With Parents With Mental Health Problems ?
A workshop held jointly by David Bailey - North West London Mental
Health Trust, and Ellen Marks - NSPCC Parental Mental Health Service
Notes by Alleyn Wilson
David and Ellen explained that the model they would demonstrate in this workshop
was based on their work with people with a diagnosis of personality disorder (PD) or
of borderline personality disorder (BPD) in the Parental Mental Health Service (PMH)
in which they worked (see plenary about the Parental Mental Health Service.)
The workshop started by dividing into small groups and sharing the words which
came to mind when thinking about PD or BPD. This was to be from a professional and
/or personal perspective. These words /thoughts were then written on post it notes
which were stuck on the wall and one of the presenters grouped them into similar
themes. Some of these thoughts were
Heart sink -. Complexity - Safety/danger - Resistant to taking responsibility.
Difficulty with boundaries - High threshold - Multiagency approach - Risk managing
- When is enough enough - Labelling – Stigma - Rescue - Adverse life events
- Chaos - Fragmentation, - Appointments not attended - Self doubt - Sabotage Difficult and inappropriate relationships - Human - Emotional rollercoaster - Life long
intervention - Lack of say – Outsider – Disempowered - Perceived as hyper critical Rejecting
It was noted how negative most of these were. There was then discussion about how
PD and BPD are manifested and perceived making life difficult for people with those
diagnoses. These thoughts also highlighted some of the difficulties which may be
experienced by professionals working with people with PD or BPD.
The workshop then broke into 4 groups and each of which was asked for their words
and thoughts about the needs of a developing child at a different age.
The groups were for 0-3 years, 4-9 years, 10-14 years and 14+years.
The thoughts of each group were again written onto post it notes and were then
arranged chronologically on the wall. They showed the needs for physical care in very
early life but within a warm sheltered environment that is caring and steady. This
develops into an increasing need for play, education, different food, relationships,
emotional understanding etc. Some needs for each age were shown to be overlapping
eg food and shelter is needed at all ages, but many changed as the child grew
older. Some were consistent but became more complex eg emotional care and
independence, and some needs required specialist parenting skills eg negotiating and
compromise.
There was some interesting discussion as to how these child development “norms”
and needs might be different in some cultures. For example a child in a wide extended
family may have experience of different close caring relationships. The nuclear family
is not the only model of successful parenting.
However, for healthy future living, all children should have their needs met
appropriately at all the different stages of their development. In terms of parenting
where a parent has PD or BPD this is complex and especially hard. The parents may
not have had all their needs met in childhood. The PMH service model aims to enable
children‘s needs to be met and parenting skills to be increased despite the mental
71
distress being experienced by members of the family.
The two sets of “thinking” post it notes, (what people think of when they hear “PD”,
and the needs of children 0-14+) both of which were grouped on the wall, showed
how childhood needs are related to gaps in the provision of those needs by their
parents.
The presenters then outlined practical advice as to how we could bring together more
of this understanding of children’s needs and the perceptions of the problems people
with PD have. This is a way of “thinking families” and working to start families along
the right caring lines.
Therapy with families, and especially with adults was therefore helped by:
1. Having realistic conversations and being clear about what people can achieve eg
by role playing meetings with other agencies
2. Tackling issues of disappointment in terms of expectations and learning how to
negotiate
3. Being honest about how they will, inevitably, at some time be let down by the
worker or the service but must the worker know when this is happening so it
can be rectified
4. Using feedback and paraphrasing to show empathy and enable greater
understanding by opening up possibilities
5. Developing a culture of questioning and curiosity for children and helping
parents to answer- to rehearse what is an appropriate question and what is an
appropriate answer
6. Holding a neutral position and be non judgemental
7. Discussing issues about the future – what is realistic, what is achievable, where
the person wants to get to and how they wish get there
For the child direct therapeutic work includes:
1 using play-based age appropriate means to communicate - play is a child’s
natural form of communication until adolescence
2 neutrality - we do not take sides, though we can empathise with child’s
experience
3 questions and curiosity - take an active interest in child’s life and experiences
in order to spark curiosity about self. Therapist takes a more direct/active role than is
seen in other non directive/ child centred approaches
4 psychosocial education - children, even very young children need to be given
age appropriate information about parents’ illness. In the absence of accurate
information children will create their own narrative
5 expand emotional literacy and vocabulary - need to be able recognise and
communicate feelings to be able to navigate social world in which we live - again
active role for therapist, lots of ‘I’ sentences
6 talk abut the future - how would you like it to be? What are you going to do? create a sense of hope that can be different in the future
7 provide an adult role model who is consistent and predictable - the relationship
is the therapy
For both adults and children the model is for the service to work through a
72
therapeutic relationship to give consistency – the role of the therapist is to give a
different and understandable experience
The workshop participants then asked some more general questions.
Q1 Where did referrals come from to their service (see notes on plenary by same
presenters about the Parental Mental health Service)
A, These came mainly from CMHT (Community Mental health Team) and adult mental
health services but the parents still needed to “buy in“ to the service. Getting a family
to participate could take some time especially if the parents believe they are seen as
“bad parents” and are afraid of child protection intervention. The service preferably
sees the child on its own and then also together with its family members.
Q2 . How was this joint model developed? Many services are desperate for this kind of
joint therapeutic work especially for parents with PD.
A. The presenters stated that this was not the only model but that it worked for them.
They have developed a DVD “Still waiting for an answer” which is aimed at getting
support and finance from commissioners. This DVD shows that the model does work
in bridging the gaps and is useful to show others when trying to get support.
Q3. How are outcomes measures and what tools are used?
A. The PNH service uses HONOSCA (Health of the Nation Scores, Child and
Adolescent) regularly when people come into the service and when they leave it.
The presenters felt however that this tool was too child focussed and did not really
capture the views of other agencies. There is a need for greater participation in the
feedback and this should not to be limited only to a clinical viewpoint. The service
does maintain anecdotal views from children who are asked what made a difference
for them but it is more difficult to know when something has not made a difference.
Parents also need to be able to give their views about how they and their children
have been helped.
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NICE recommendations relevant for parents with personality
disorders (for Borderline Personality Disorders and Antisocial
Personality Disorder plus links with SCIE)
Jeni Webster
Notes by Vicky Nicholls
The session opened with Jeni showing participants an Edwardian picture of a mother,
father and youngish girl (about seven) outside a bar-front. The father was pulling
towards the entrance as if he was desperate to go in; the girl pulling on his arm as if to
try and stop him; the mother standing a way apart half-covering her face with a scarf
and looking down.
Jeni asked people to discuss who they thought from this picture would come to the
attention of services first – mother, father or child. Most said they thought the mother
would, as it is usually women who come to the attention of mental health services
and this mother seemed to be depressed and anxious. Other thought the father might
come to the attention of alcohol or mental health services but that he was unlikely to
want to engage with them. All were concerned for the welfare of the child and some
wondered why she wasn’t at school. We talked about the need for some attention
to the whole family, with each of their needs being considered in turn, and this led
into Jeni’s presentation of NICE guidelines and where these include family-centred
recommendations.
The difficulties with the NICE criterion of cost effectiveness demonstrated by research
was discussed – PD is not necessarily amenable to randomised controlled trials. There
is a tension here, as talking therapies are individual and constructing research in
which individuals can be randomly allocated to a control group is deeply problematic,
on an ethical as well as a practical basis.
Some guidelines mention family issues but others say it is outside their remit.
PCTs are assessed on how they are implementing NICE guidelines but these don’t
necessarily show joined-up thinking. The new SCIE ‘Think child, think parent, think
family’ guidelines are in contrast much more about listening to people’s personal
experiences and will have more influence into the future.
The Association of Family Therapists has recently produced recommendations for
training based on systemic family therapy. In this model it doesn’t matter who is
actually referred, therapists help family members find constructive ways to help
each other. Sadly there aren’t many family services in adult mental health. More
information on NICE guidelines that include families is available at: www.aft.org.uk
Jeni then talked about borderline personality disorder (BPD) – what tends to
characterise people with this diagnosis and what is often behind it e.g. history of
childhood neglect and insecure attachments. It can be difficult to get into family
issues with someone with this diagnosis as they can find it difficult to hold a clear
picture of someone else in their mind or to feel heard – the therapist needs to be able
to hold this person in her or his mind until a time when they are able to be open to
these sorts of discussions.
She contrasted NICE guidelines on BPD with SCIE’s 2006 work assessing the impact
of parental mental health on children caring for a parent, much more from the child’s
perspective and understanding child’s possible concerns. In the NICE guidelines on
antisocial pd (ASPD) the impact of living with a parent with mental health, drug or
alcohol or child maltreatment issues is not spelled out, but four types of systemic
family therapies for 11-17 year olds at risk of developing ASPD are recommended and
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costed out in great detail. Unfortunately the evidence base for the four recommended
preventative interventions is from the USA and family therapy in the UK is different –
more research is needed here.
Jeni then went through approaches that are being piloted in the UK under NICE
guidelines for preventing ASPD, including multisystemic therapy for those with
conduct disorders plus risk of offending who are at risk of being excluded from their
family. These pilots are supervised from the States and include intensive support
with a worker going into the home several times a week. There are also pilots of
multidimensional treatment for foster care, for those with conduct disorders at risk
of being in long-term care: these incorporate family therapy for birth families with a
view to the young person returning home after treatment. Ten local authorities across
the UK are involved.
Parent training and education programmes in the management of children with
conduct disorders: Jeni described these as being the most specific treatments for pd
to be found under NICE. Although pd not named, the related issues can mean there is
likely to be pd involved.
For parents with a dual diagnosis of PD and depression, bipolar disorder, post
traumatic stress disorder, psychosis or substance misuse, treatment recommendations
are based on the second diagnosis.
Depression guidelines for children and young people include lots of reference to
parental mental health. Family therapy is recommended. For adults, systemic couple
therapy based on a model from the Maudsley, which includes children living with a
parent with depression, wasn’t included in the 2009 guidelines. Focus is on CBT.
Discussion: re ASPD it was easier to say what you shouldn’t do, clearing up
idiosyncratic practices known not to work e.g. admitting people onto acute wards
shouldn’t happen on anything other than a short-term basis. But a view was voiced
that the guidelines are used as a basis for closing services and new things are brought
in that are less helpful. Also how do you get proper service user evaluation of what
they value? NICE isn’t able to take this on board yet. Although people talked about
a range of counselling and talking therapies in the context of family situations, the
evidence was only for CBT – but some people aren’t finding CBT helpful. A Ministerial
statement is due on couples counselling for separating couples, which is tricky in
the light of NICE guidelines focus on evidence that only recognised behavioural
couple therapy (there being similar levels of evidence here). This might bring in a
shift in thinking about what is acceptable evidence or what is funded (or available).
Practitioners continue to do what they think works, more systematic support needed
here. The suggestion was made to invite the Royal Colleges to put themselves out
there as the basis for social work students’ research.
Finally the guidelines for schizophrenia were discussed and the approach used by
the Meriden project highlighted. They train staff in behavioural family therapy and
other organisations in thinking family. They have a cascade system, people can train
to be trainers and by now have people trained in all four UK countries. A member
of staff from Meriden took part in the workshop and explained how she had seen
terrible things happening as a ward manager and was now getting the word out about
Meriden. For more information about their work see:
www.Meridenfamilyprogramme.com
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The workshop discussion concluded with points about the use of A&Es as a secure
attachment by some; and that the evidence indicates that the modality of therapy is
less important than the environment in which it is delivered. A last example was given
of a UK-based study involving 700 participants in which being engaged in the study
was what had the biggest effect.
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Growing Up With Parents With Personality Disorder And What
Would Have Helped
Interview - Julian Turner & Lesley
Julian introduced himself as Chief Executive of Leeds, MIND, Lesley introduced herself
as a service user with a diagnosis of borderline personality disorder.
I think those attending the workshop would wish to thank Lesley for sharing so many
difficult memories with us in order to help us to understand how we might help children
in a similar situation. I have tried to summarise what Lesley said but this cannot do
justice to Lesley’s very moving story.
Lesley spoke of her memories of her childhood of feeling very alone, not fitting in either
at home or at school. Lesley said she always thought that she was in the wrong family
and kept expecting someone to come and take her to her rightful family.
She was the eldest of a family of five children and from a very early age was given huge
responsibilities for caring for her siblings. She recalled when she was only about 3 years
old herself full responsibility for bathing her younger brother. The role she played in the
family was such that when her brother got married abroad he wanted their mother and
Lesley both to be there, as he wanted “both his mums there”.
Lesley described her parents as unable to deal with their emotions. Her mother had polio
as a child and as result had mobility problems. Lesley said she harboured resentments
about her disability and took this out on her children, constantly moaning about her
situation. Her father was 25 years older than her mother. She knows that her father had
a very rough childhood and Lesley feels he wanted an ideal family to replace his own.
He also wanted a boy first, and Lesley therefore felt as a girl that she was “not good
enough”. Lesley said her father was extremely volatile and became angry and violent
quickly and frequently . He could lose his temper over very trivial things such as a knife
being in the wrong place when the table was laid for a meal. He was frequently violent
toward his children including throwing them across the room or down stone steps. As
the eldest Lesley was also often punished in this way for the other children.
Lesley said the children were always trying to predict what would please their parents.
Yet whatever they did, no matter how they reacted the abuse would continue. She
also recalled having to try to do the right thing for her younger siblings. She gave an
example of being given some roller skates when she was about 7 years old. Her father
was a perfectionist and did not allow mistakes. So she remembers skating and trying to
make sure that she did not fall over as the skates would have been taken from her and
her younger siblings would not been given skates themselves.
Julian asked Lesley whether she could recall any happy memories of her childhood.
Lesley said family photographs showed the family smiling and laughing, although
perhaps there were not many photographs. Lesley said the family came to Yorkshire
for holidays to visit relatives and would go out for walks etc. However, even then if
some small thing upset her father – which could be just walking too quickly – then
the children knew they would be punished when they got home. The other time when
Lesley seemed to recall some times to play were when the children went to Church with
their mother and after the service could play in the Vicar’s garden. Outside the home
they were portrayed as a happy family and her parents seemed able to “hold things
together well enough”.
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How Lesley “coped”
Lesley recalls self harming from the age of 5 years and yet this did not seem to be
noticed by her parents. Lesley spoke of “learning to cry inside” and literally of tears
going down her throat. Chillingly, her headmaster encouraged her to go to boarding
school because he feared that she would “not reach adulthood otherwise”. However,
no one from her school appeared to take any action about this. On one occasion she
was sent home from school because she was ill and when she returned to school she
was covered in bruises – so she was never sent home again. Lesley also wonders
whether her mother ever confided in the minister or someone else from Church,
but she does not know. For about a year she was invited to the home of one of the
congregation and spent time learning to cook and sew – she wonders if this was
some attempt to help. It was suggested that the adults at school and Church might
have been fearful of the situation and of intervening or alerting Social Services.
What might have helped
Lesley felt it would have helped her to have someone to talk to. She needed an adult
to make an effort and to make it OK to talk. An adult needed to persevere, but noone did so.
Lesley said several times that she felt if they had been helped as a family things
might have been different. “No one did anything to make a difference”
Lesley was asked what sort of help might have helped the family. She said that at one
time they had a home help to help her mother because of her disability. However
the home help was only about 16 years old. She wonders if a more mature women
had come into the family offering practical help and had been able to notice that
things were wrong and build up a relationship with her mother and other family
members – this might have been the “way in” to help the family. Family not individual
intervention was needed.
Lesley’s adult life
For herself Lesley clearly suffered greatly as a child. She self harmed from an early
age and throughout her childhood and teens. Yet it was only in her late 20s that
Lesley was admitted to hospital and started to receive help.
Lesley spoke of having “shut down” about 10 years ago, as a means of coping
although this has changed since. She explained that she and all her siblings have
had problems expressing feelings. Only one of her siblings has had a successful
marriage. Two of her siblings have needed to use mental health services.
Lesley spoke of feeling that she had let her brothers and sisters down because they
have these problems. Julian felt that the expectations made of her were far beyond
what could be expected of such a young child. He felt that Lesley is far too critical of
herself and is good at looking after others but finds it difficult to look after herself.
Lesley indicated that she has a very good relationship with her nephew and niece and
knows when anything is wrong. This seemed to highlight how survivors can have extra
capabilities and strengths to help others and to aid professionals in helping others.
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Art As A Therapeutic Process To Safe Self Expression And
Recovery
Julie Bagwash – Artist
During her presentation Julie showed many examples of her poetry and art work,
including sculptures, which demonstrated how she had come to use art in her own
journey towards a safe recovery. Bagwash is not her married name but the one she
uses for her art. It is taken from the children’s character
After a period of ill health Julie then went to college to undertake an art Foundation
course. Her early art work was a way of expressing herself and trying to develop
more positive thinking. Her art then became integrated with her poetry as a
therapeutic process and a means to self expression. The themes of Julie’s work at this
time related to those who had been institutionalised via the mental health system and
she has used the imagery of Jacques Cousteau, the underwater photographer, as an
inspiration. This has now moved her into developing the skills for sculpture.
Julie felt that rehabilitation through her art has given her back ownership of herself
such that she is confident she will not become institutionalised again .To demonstrate
this confidence Julie showed a video of her sculpture installation at university .
She described how she did not fully realise how much of her ill health the children
were witnessing and how this affected them.
The audience then put some questions directly to Julie about her art and recovery:
• Julie was asked if she sees her art as therapy or art therapy. Julie was clear
that she does not like to think of it as art therapy but she was making art that
was therapeutic for her.
• She was asked what had helped her to deliver her poetry, art and sculpture.
Julie told us that she had started by being encouraged to write things down
and by trying to engage others so that she could understand how they feel
and where they fit into things, almost as in a therapeutic community. She
had received great support when applying to and attending both college and
university and had found disability services at uni had been a vital support.
• Julie was asked about her children and what help they got whilst she was
unwell? Julie explained that her children now live near to her. She emphasised
again how she had come to understand that children do see and worry about a
parent’s illness and behaviours perhaps more than the parent realises.
• She was asked if all her art was inspired by her mental health issues or for
example places she had been to. Julie explained that during her uni course she
had to work to a formal student’s brief and having completed that work she would
then come back to the “real me” .She explained she can do other work but that
inspired by herself is more passionate.
• Finally, Julie was asked about her recovery .She said for her, her particular art
work meant that that she had a medium for expression. She has now learned to
manage her feelings and to express them in her art work. This is the sense in
which her art has helped her towards a safe recovery.
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