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
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.
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
your car registration number prior to the
Need further information/want to join?
Contact Dr Judith McBrien
or Prof Stephen Brown
or check the web site at: