‘What are the needs of parents, carers and/or family members who have a relative supported within a specialist learning disability forensic Trust – A qualitative research project’. Michaela Thomson, Research Practitioner (Project submitted as part of MSc in Clinical Research)

1. Michaela Thomson, Research Practitioner
(Project submitted as part of MSc in Clinical Research)
Let’s Talk Research 2015
‘What are the needs of parents, carers and/or
family members who have a relative supported
within a specialist learning disability forensic
Trust – A qualitative research project’.

2. The NHS Trust provides assessment and treatment for
adults with a learning disability who have significant and
complex needs that cannot be met by local services.
Some are detained under the Mental Health Act (1983)
due to their level of vulnerability and/or association with
the criminal justice system.

3.  Every attempt has been made to protect the
identities of the research participants and the
people they are related to in the Trust.
 Age/gender and relationship to the people
supported within the Trust have been changed to
prevent identification.

4.  A search of current published literature identified the
importance and value of involving carer’s in the planning
and implementation of health care services.
 A gap of published studies highlighted the extent to which
this area of research has been largely unexplored.
 The review found three prominent inter-connected
themes:
Out-of-area placements (Chinn et al, 2011; Walsh, et al,
2001; Bonell et al, 2011), The complexity of family
relationships and dynamics (Absalom et al, 2010; Chinn
et al, 2011; Longo & Scior, 2004) and Lack of a family
inclusive culture (Noble & Douglas, 2004)

5.  Permissions sought from Trust R&D Committee
Meeting and Lancaster University Departmental Ethics
Review.
 Interview questions were conducted informally in a
conversation style approach allowing participants to
‘tell their story’. The interview schedule was used for
gentle prompts when required, to ensure the aims and
objectives of the research were met.
 The interviews were recorded, transcribed verbatim
and analysed using Thematic Analysis Braun & Clarke
(2006).

6. 1) Past
Experiences
2) Building Trust
3) Political
Agenda / Forensic
Specific Issues
4) Positive
Supports
The themes reflect a
journey taken by the
carers representing
their personal
experiences.

7. Past
Experiences
‘I had a raw deal as well; we’ve had a raw life with
my son, since he were a baby. This is before, when
he was toddling, not when he’s 42 now, this has
been going on since he were little. Made out, you
know, you should take him here, take him there, I
took him everywhere, social workers, we lost trust
in anybody’ .
 Families recounted years of association with varying services,
most of which were unhelpful.
 Families had experienced numerous past placement breakdowns
where experiences were reported as largely negative.
 Breakdowns were mostly as a result of the level of complexity of
the person.
 Families had to travel on average more than 2 hours to visit
relatives at the Trust. This was largely due to the lack of local
specialist services.

8. Building
Trust
‘Well they both came to our house and talked
about my son and listened to his story, cos for
him past history is always vital isn’t it, for what’s
worked and what’s not worked’
‘And they care as much for me, you know what I
mean?’
 Admission into services was identified as the optimum time to
begin a trusting relationship with families. If this isn't achieved at
this particular time, building trusting relationships with families
takes longer and is more complex.
 Families of people transferred directly from a prison, may find it
more difficult to build trust with services especially if the transfer
was at short notice.
 Families welcomed the acknowledgement of their and other
family members needs as key people in the lives of the
individuals supported in the Trust. This included siblings.

9. Political Agenda /
Forensic Specific
Issues
‘The staff have the strength to be able to say well
actually, we’ve tried putting a picture up and he
keeps taking it down, and that’s a strength you see
and that’s, it’s trying to keep those things in isn’t it.
And so it’s not responding to these external
systems – CQC I’ll say it, the X word! CQC and
people like that who are damaging his care by
criticising’.
‘If someone thinks that this place is a prison, yes
they might be offenders, they might have been
through the Mental Health Act, but that does not
mean to say that these people are criminals’ .
 Families interpreted the re-settlement agenda (Bubb, 2014)
differently highlighting the extent to which each case must
be carefully considered in its own right.
 Families appreciated a sensitive approach when discussing
forensic issues.

10. Positive
Supports
‘They have rescued his life completely,
transformed it completely, he’s at this best
most of the time and better than his best
ever was really’ .
‘And I think that is really important cos you know, you
go to some places and it’s like you’re anonymous and
you think your child’s difficult and therefore you’re
perhaps embarrassed, you know, oh no he’s been
really difficult again, but you don’t feel like that here,
you feel welcome’.
And like I say they consider me as
much as my relative’.
‘I thought if they are going to make me feel like that then they’re going to
look after my [family member], it just gives off an aura, and I don’t believe
in anything like that but it does, you can feel it, you know I have been in
the game a long time, and I know when people are being truthful’ .

11.  Services must be aware that new families may have
experienced numerous past placement breakdowns, which
will impact on trust issues.
 Families often have to travel substantial distances to visit
relatives.
 Carers value wider members of the family being
acknowledged as key people within the lives of the people
supported.
 Getting the right medication for the people supported is
important to families and they value discussions
concerning this.

12.  It is imperative services deploy a sensitive and supportive
approach at all times and consider the past experiences
families and carers may have had before coming into
contact with the Trust.
 A more flexible approach to recruitment and timescales is
needed to engage the ‘hard to reach families’ in any future
research.
 Further research could consider a case study design to
‘track’ the implications of the re-settlement agenda to
determine its impact on both the people supported and
associated families.

13. There were a number of limitations associated with the
research that require acknowledgement.
 Complex recruitment procedure led to small sample
size. This was associated with the balance between
confidentiality, risk and current presentation of service
user as permission was required from them prior to any
interviews with their family.
 Lack of opportunity for spontaneous recruitment.
 Timescale associated with academic qualification.

14. Any Questions ?
Please feel free to discuss this project with
me at any point during the afternoon or via
email.
Michaela.thomson@calderstones.nhs.uk

15.  Special thanks to the research participants who
generously gave their time and shared their
experiences.
 Thanks to Paula Johnson, Research and
Development Manager who has supported the project
and the MSc throughout in its entirety.
 Thanks to Dr Cheryl Simmill-Binning academic
supervisor from Lancaster University
 And finally, thanks to everyone at the Lancaster Health
Hub especially Dr Sally Spencer for her support.

16.  ABSALOM, V., MCGOVERN, J., GOODING, P.P & TARRIER, N. (2010) An assessment of patient need for
family intervention in forensic services and staff skill in implementing family interventions. The Journal
of Forensic Psychiatry & Psychology. 21 (3). P.350-365.
 BONELL, S., ALI, A., HALL, I., CHINN, D & PATKAS, I. (2011) People with intellectual disabilities in out-
of-area specialist hospitals: What do families think? Journal of Applied Research in Intellectual
Disabilities. 24, P.389-397
 BRAUN, V & CLARKE, V. (2006) Using thematic analysis in Psychology. Qualitative Research in
Psychology. 3, P.77–101
 BUBB, S. (2014) Winterbourne View – Time for Change. Transforming the commissioning of services for
people with learning disabilities and/or autism.
 CHINN, D., HALL, I., ALI A., HASSELL, H & PATKAS, I. (2010) Psychiatric inpatients away from home:
accounts of people with intellectual disabilities in specialist hospitals outside their home localities.
Journal of Applied Research in Intellectual Disability. 24, P.50-60
 DEPARTMENT OF HEALTH. (2007) Commissioning Specialist Adult Learning Disability Health Services.
HMSO, London.
 LONGO, S & SCIOR, K. (2004) In-patient psychiatric care for individuals with intellectual disabilities: the
service users’ and carers’ perspectives. Journal of Mental Health 13, P.211–221.
 NOBLE, L & DOUGLAS, B. (2004) What users and relatives want from mental health services. Current
Opinion in Psychiatry 17, P.289–296.
 WALSH, P. N., LINEHAN, C., HILLERY, J., DURKAN, J., EMERSON, E., HATTON, C., ROBERTSON, J.,
GREGORY, N., KESSISSOGLOU, S., HALLAM, A., KNAPP, M., JARBRINK, K & NETTEN, A. (2001) Family
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