DDREG
University of Plymouth: Faculty of Health
Minutes of DDREG EXECUTIVE GROUP 8th September 2009 1300-1500
Present
Stephen Brown (chair)
Sarah Whitwham
Judith McBrien
Richard Laugherne
Rohit Shankar
Deirdre Ford
Apologies
Deanna Gallichan
Susan Lea
Marion Nash
1. Introductions
Dr Richard Laugherne joined the steering group. He is a Consultant Psychiatrist in Adult
Psychiatry in Cornwall, Research Lead for Cornwall PCT and Head of the school of
Psychiatry in the South West Peninsula.
2. Membership
Current ‘gaps’ in steering group membership were identified. Education (formerly filled by
Marion Nash who has not been able to attend for many meetings) and the University of
Plymouth (formerly filled by Oliver Tucha.) It was agreed that Prof. Rob Sheaff would be
invited to the next meeting and Judith McBrien and Deirdre Ford would approach the new
Dean of the Faculty of Health to discuss DDREG.
Action: Deirdre to invite Prof Sheaff.
Deirdre and Judith to arrange meeting with Dean.
3. Group news and discussions:
Dementia
 Discussions took place regarding the difficulties of tapping into larger scale, multi-centre
studies (such as DeNDRoN). RL suggested DDREG develop a research proposal and
seek funding from NIHR. This may link with DeNDRoN. Proposals would be
strengthened if the bid was a combined effort incorporating all ‘DS & dementia’ centres
in the UK. Also strengthened if there is cross over with ongoing or relevant ‘mainstream’
research (e.g sensory processing therapy). Forging links with John Clibbens may also
produce a strong joint bid. It was noted that Helen Quinn’s remit is to assist in the
development of such bids and she may be helpful in this capacity.
 RL referred to a recent article in the British Journal of Psychiatry (thought to be August
2009). It relates to case registers and may be of interest.
 Ideas for future research:
o Reviewing Plymouth’s longitudinal DVD data of people with Down’s syndrome
who have developed dementia.
o Exploration of ‘healthy’ older adults with Down’s syndrome (50/60 years +)
Epilepsy
 Dr Anne Sabers (Neurologist, Denmark) visited SB’s service in Cornwall regarding
VNS work. Is a DS and dementia epilepsy expert and interested in myoclonus in DS.
 Accessible information for service users (SW). Focus group has explored current
leaflet literature available and group made suggestions for improvement. Plymouth to
develop own service leaflet with funding from Pfiser.
 DVD / YouTube accessible information for service users (SW, SB) Discussions have
taken place to develop YouTube footage relating to various epilepsy topics. A pilot has
been considered relating to epilepsy and dementia.
ADHD
 Next meeting is 6th October 2009 at Buckfast Abbey. SB currently chairing group with
a view to handing over to another member. SB will report back on a research strategy after
this meeting. JMcB suggested Marion Nash be invited to attend the group.
Attachment
 Deanna Gallichan currently on maternity leave. Research to commence Sept 2010 on
the validation of the AAP in the learning disabled population.
Sensory processing
 Rohit and Jnr Doctors in Cornwall are embarking on sensory processing work after
significant work to soundproof clinic space.
Action: RS to disseminate relevant papers for team to read.
Other group news / future directions:
 A Health facilitation group and a Sensory Processing Group are possibly to be formed in
the near future.
 Project in Autistic Spectrum disorders. The group discussed the need to resurrect an ASD
group. RS keen on this idea and is applying for a post graduate certificate in Aspergers
syndrome (an NAS-run course).
 Risk and hospital discharge – RS described some qualitative work he is involved with
that is being driven by Scott Brown (Research Governance Manager, Cornwall). It relates
to health care professionals’ experience of the risk factors they take into account when
discharging people with LD from hospital back into community settings. The team
discussed the need to include social workers and service users in the research as well as
health workers.
4. Current research activity/publications/dissemination underway
Dementia
 Residential home capacity to care for people with LD and dementia (JMcB, SW, DF et
al) - in final stages of write-up.
 DLD research (Andrew Merwood, JMcB et al) paper has been submitted to the
American Journal of Mental Retardation.
 Development of e-learning for training care staff (SW, JMcB) Plymouth City Council
have offered to fund this project.
 Screening checklist (SW): ethics application to be submitted for larger 3-year study.
 Screening checklist (SW) paper accepted subject to revisions to British Journal of
Learning Disabilities.
 Senile myoclonic epilepsy and dementia (SB) Boston conference, Dec 2009
 Audit of prospective screening audit (JMcB and Branwen Major) accepted subject to
revisions to Clinical Psychology Forum.
 Prospective screening descriptive article published (JMcB) (see attached)
Epilepsy
 Epilepsy service user group: two articles currently being written (SW and team)
 SB and team to present VNS paper and DS & myoclonus research in Boston, US in
December.
 Safety issues in buccal midazolam (and other rescue medications) (SB, SW) Audit
planned in Devon and Cornwall. SW and Sally White (Epilepsy Nurse Plymouth) have
developed audit paperwork to be rolled out across peninsula.
Comparison of WAIS and WASI
 Article well received by BJCP but needs more data. SW to consider re-submission as
an exploratory paper, and develop project to gather the additional data required.
Sensory Processing
 Sensory Processing (SB, RS) paper on pilot study relating to depth perception deficits
in preparation.
Forensic
 Article on risk assessment submitted to TLDR (JMcB and others). This is currently
under peer review.
 Article on outcome of SOTP (Liam Newton, JMcB and others) in preparation. A
NOTA presentation planned for September 23rd 2009 in York.
5. Website
SW to meet with website developer. Personal descriptions of research interests are still
required for many of the executive and sub-group members. Please send to Sarah asap if you
wish to be included on the site.
6. Events/Conferences
 One day DDREG conference ‘Let’s Do Research’. October 20th at Buckfast Abbey.
Aimed at LD teams in south west.
 NADD International Congress, Toronto, April 2010.
 American Epilepsy Society. Boston, USA. 2 to 4 team members going from Cornwall.
 IASSID – European Congress. Rome, Oct 20-22.
 Bridge – conference in Bristol May 2010. RS organising a sensory processing poster.
 Cornwall Disability Research Conference. October 29th 2009. “Geographics of disability
– what a difference a place makes”.
Next meeting - Tues Dec 1st 2009
At PAHC, Majon 1300-1500
Future meetings:
Tuesday 9th March 2010
Tuesday 8th June 2010
Tuesday 7th September 2010
Tuesday 14th December 2010
CONTACTS
SB
JMcB
SW
Stephen.Brown@cpt.cornwall.nhs.uk
judith.mcbrien@plymouth.nhs.uk
sarah.whitwham@plymouth.nhs.uk
DG
deanna.gallichan@plymouth.ac.uk