Developmental Disability Research & Education Group - DOC

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					                    A partnership of health, education and other agencies in Devon
                    and Cornwall committed to improving the evidence base for work
                    with children and adults with developmental disabilities, through
                    research, evaluation and education.
                                                   group, specifically the project carried
Minutes of DDREG Steering Group                    out with Mary Lindsey. This was a
11th September 2007, MarJon 1300-1500              survey looking at diagnostic practices
                                                   and how individuals felt about the
Present:                                           processes with a grant received from
Stephen Brown, Chair (CPT)                         the Duchy Health Charity. A follow up to
John Clibbens (UoP)                                the original survey was carried out and
Judith McBrien (Ply PCT)                           NM has produced a report. SB is to
Andrew Merwood (Ply PCT)                           comment on this and then it will be
Jane Bernal (CPT)                                  made available to the rest of the
Beena Kumari (CPT)                                 group.
Deirdre Ford (UoP)
Nick Morley (RCHT)                                 The group had relaunched as an
Margaret Cushen (DPT)                              offshoot of the university based
Steven Mahan (Ply PCT)                             developmental groups. There was a lot
Melissa Webster (Ply PCT)                          of interest in the topic but no specific
Leslie Goldsmith (UoP)                             projects arose. NM is now working in
                                                   the area of cancer research so is
In attendance:                                     unable to devote the time to the autism
Mandy Bryant (minutes)                             group. Some new staff expected in the
                                                   Peninsula may be interested in taking
Apologies:                                         this work forward.
Sarah Whitwham (Ply PCT)
Marion Nash (Ply)                              Language & Cognitive Development
Deanna Gallichan (Ply PCT)                        This is an active University based
                                                  group.   It   focuses    on    typical
                                                  development and some atypical groups.
News of members                                   The group organised the BPS
  SB welcomed the new members to the              Developmental conference at the end
  group. LG talked about the project she          of Aug. This was a success with over
  was working on around informed                  200 delegates attending.
  consent to genetic testing (e.g.
  pharmacogenetics and susceptibilities)       Dementia
  in LD. She is currently at the literature       This group includes members from
  review stage but is hoping to work in           Cornwall,     Plymouth  and     Exeter
  LD services and with GPs.                       services. The group has been sharing
                                                  information on measures for early
Minutes of 5th June 2007 – agreed as              screening, all have the DMR in
accurate.                                         common. AM will be looking at the data
                                                  generated for his undergraduate
Matters Arising                                   dissertation.
   Will be dealt with under other agenda
   points.                                         The study looking at the capacity of
                                                   residential homes to care for people
Updates on activity                                with Down’s Syndrome and dementia is
                                                   near completion.
    NM attended the meeting and gave a             SB contributed to the expert evidence
    summary on the work of the autism
     given at the recent judicial review of the            developed by Carol George, that could
     NICE dementia guidelines. JMcB has                    be adapted for this client group has
     been invited on the panel for the                     been identified, this is not as language
     development of a joint BPS RCPysch                    based as others. The author has
     guideline on LD and dementia good                     agreed to send the assessment to look
     practice. JB has an interest in research              at before DG signs up for the training.
     on end of life care having supervised a               DDREG should be able to contribute to
     PhD student carrying out a qualitative                the cost for the training.
     study on individuals with LD who had
     cancer. There may be some scope for              4.7 Individual research topics/interests
     similar ethnographic work in LD and                  Health facilitation group – the PCT in
     dementia. JB was invited to attend the               Cornwall has commissioned a health
     next meeting of the dementia group.                  facilitation service with 3 community
                                                          nurses. Alison Webb, one of the
Epilepsy                                                  nurses, is interested in finding out what
    The epilepsy group (PEIG) met                         services are offered in other areas in
    recently. Guidelines developed by the                 the region. Suggested contacts were
    group on contraceptive choices and                    given and will be passed on to Alison
    antidepressant choices in epilepsy are                and she will be invited to attend the
    now on the DDREG section of the                       next steering group meeting.
    SWORD web site. Another guideline
    on the management of pregnancy,                        Borderline     Personality  Disorder
    labour and neonatal issues is at the                   research – MB is to redo the patient
    draft stage.                                           information sheet then submit the
                                                           paperwork to the LREC.
     Other      work     includes     trying     to
     standardise        rescue        medication           Capacity assessment project – this pilot
     protocols/guidelines. There is an issue               is nearly completed. Vignettes have
     around the training of care staff in                  been developed covering finance,
     private residential accommodation.                    tenancy,     property   and    medical
     Training is offered by the nursing staff              procedures with standardised score
     in the services across the region but is              sheets and visual aid cards. There was
     often      done     by    other      training         a discussion around carers and staff
     organisations and there is no check on                making capacity assessments on a
     the standard of the training given. The               daily basis. Andrew and Branwen will
     group is to write to CSCI to raise the                be passing on the work to Steven and
     issue and they were discussing the                    Melissa. If anyone is interested in
     feasibility of providing a training event.            collecting data please contact JMcB.

4.5 Forensic Research                                      Day services research – Clinical
    One of the issues in forensic care is the              Psychology trainees have been working
    mapping of where people are placed.                    on a large survey looking at the impact
    This has been carried out in Plymouth                  of day services closure. DF will ask if
    but really needs to be looked at across                they can attend the next meeting to
    the region. If anyone is interested in                 give a presentation on their work.
    being involved in a forensic research
    group please contact JMcB.                             MC is starting an evaluation on how
                                                           individually designed services impact
4.6 Attachment sub group                                   on care of people with very complex
    This new group has met again and is                    needs, how services are set up and
    made up of University staff and                        how they recruit staff. Currently putting
    clinicians. Discussion was around the                  basic measures in place.
    proposed study on attachment in adults
    with LD. There are no validated
    measures for LD. A measure,                       5.   Web site

      MB has been updating the information
      for the DDREG website prior to the
      proposed move to the UoP site. The
      group went through this information and
      made suggestions regarding the layout
      and the information included. SB, MB
      and JMcB are to have a final look at
      this before setting up the new site.

6.    Conferences
      DDREG conference 2008 – A planning
      meeting for the conference has been
      arranged for 11th Oct. The date and
      proposed speakers will be decided at
      this   meeting    (incorporating the
      suggestions from the last steering
      group meeting). If anyone has ideas
      for speakers/areas to cover please
      contact MB prior to the 11th Oct.

7.    Any other business

8.    Future meeting dates
      Tue 4th Dec 2007   1.00 – 3.00

      Dates for 2008 were set:
      Tue 4th March 2008 1.00 – 3.00
      Tue 3rd June 2008    1.00 – 3.00
      Tue 9th Sept 2008    1.00 – 3.00
      Tue 9th Dec 2008     1.00 – 3.00

      The dementia group will meet on the
      same days starting at 11am.

      Venue: FF11, Peninsula Allied Health
      Collaboration building, College of St Mark
      and St John.
      Please note – car parking is very limited so
      if you can car share please do so. To book
      a parking space contact Sherry Marshall
      (        with
      your car registration number prior to the

    Need further information/want to join?
          Contact Dr Judith McBrien
                 08451 558077
            or Prof Stephen Brown
                 01208 256232
           or check the web site at:


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