Document Details
Developmental Disability Research & Education Group
- Click : 0
- Download : 0
- File Size : 11.58 K
- Document Type :
Memo
:
Developmental Disability Research & Education Group
Developmental Disability Research
& Education Group
A partnership
of health 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*.
Minutes
of DDREG Steering Group
December
10th 2004 PMS ITTC 1000-1200
Present
Prof. Stephen
Brown, Chair (Cornwall PT)
Dr Judith McBrien
(Ply PCT)
Dr John Clibbens
(UoP)
Margaret Cushen (Devon Partnership
Trust)
Dr Sarah Whitwham
(Ply PCT)
Dr Sue McGaw
(Cornwall PT)
Dr Mary Lindsey
(Cornwall PT)
Tracey Salvidge,
Research Assistant (minutes)
Tom Shaw (Research
Assistant Cornwall PT)
Kay Woodwood
(ASD Advocacy Group, Plymouth)
Hazel Lawson (Principal Lecturer
in Education, UoP)
Apologies
Liz Piper (Cornwall
PT)
Mary McClarey
(R&D, Ply PCT)
Dr Sarah Newton
(Ply PCT)
Suzanne Smith
(Ply PCT)
Andrew Bratt
(DPT)
News of members
Kay Woodward,
a parent carer and organizer of an advocacy group for parents of people
with ASD in Plymouth, Hazel Lawson, Principal Lecturer in Education
at UoP, and Tom Shaw, Research Assistant to Sue McGaw were welcomed
to their first meeting.
Minutes of September
24th 2004
accepted.
Matters Arising
The invitation to
Kathy Mittler, the lead for long-term conditions with the Strategic
Health Authority and involved in the Directorate of Workforce and Learning,
was yet to be made. It was agreed that SB
will invite
her to the next DDREG Steering Group to discuss the potential for research
into inequity in health care for people with learning disabilities.
Action:
Stephen Brown to invite
3.2 Stephen
Brown informed the group that he now has part time secretarial help
for research and asked that minutes be copied to Mandy.Bryant@cpt.cornwall.nhs.uk.
3.3 Chris
Harris, professor of neuro-science at UoP is yet to be invited to address
DDREG on his research.
Action:
Stephen Brown to invite
Reports from
sub-groups/research areas
Autistic Spectrum
Disorder Group
Mary Lindsey
reported.
The study of diagnostic
practice continues, although the level of response has been limited.
Concerns were raised that health professionals do not have the time
or resources available to collect data. As a result, the time
allocated for the project has been extended. Nick Morley has begun analysis
on collected data. A number of families in Cornwall have expressed
their willingness to become involved in future research.
The Duchy Trust
has generously awarded the project a further £15,000.
There was discussion
of how to provide supervision of a research assistant for ASD research
within DDREG as none of the experienced clinicians have time to provide
this. The possibility of Dr Elspeth Bradley (newly appointed Consultant
Psychiatrist in Cornwall) taking on some aspects of ASD research is
anticipated. She will be invited to join DDREG when she arrives next
Spring.
Action:
Stephen Brown
The Autism sub-group
will be meeting today and addressing these issues.
Forensic Studies/Adult
Protection
Judith McBrien
reported.
The study into the
long-term consequences of 'personal relationship' interventions
continues, with twelve interviews now complete.
The completed study
on characteristics of offenders and non-offenders with LD still needs
writing up.
Data collection
for the MREC on men with learning disabilities who sexually offend is
continuing.
No Forensic group
is meeting at present. One could be arranged if anyone is interested.
Judith McBrien is the contact point.
Mainstream Access
research
4.3.1 Liz
Piper will no longer be able to attend meetings as of January 2005 following
increased work pressure and clashes with the amended meeting day. It
was hoped that Liz would remain DDREG's contact point for research
concerned with mainstream access,
Action:
Stephen Brown speak to Liz Piper
Parents with
Learning Disabilities
Sue McGaw introduced
Tom Shaw, the new research assistant working with her. Tom is assisting
with writing up completed research.
Sue is working on
research into fathers with learning disabilities and intends to present
this at the conference in Barcelona next autumn.
The Parenting Manual
written by Sue McGaw is being revised and extended to four other countries.
Sue is supervising
a clinical psychology doctoral student at City of London University,
studying attachment in parents with a learning disability.
The complexities
of getting such research through ethics committees was discussed.
Sue recommends personal attendance by the researcher at LREC meetings
to answer some of the simpler questions that arise. It was mooted
whether DDREG might attempt to raise the awareness of LRECs concerning
research with people with LD, perhaps by approaching the national organisation
British Institute of Learning Disabilities.
Dementia in
Down's Syndrome Group
Judith McBrien
reported.
The write up of
studies presented at conferences is yet to be completed.
It was decided against
using the epidemiologist at UoP to assist with data analysis.
Help from a statistician is being sought instead.
JMcB has submitted
a paper to the Tizard Learning Disability Review on the prospective
screening project. It is out to peer review at present.
Sarah Whitwham has
convened a meeting for later today looking to formulate a proposal for
a new study concerned with the capacity of residential homes to care
for service users with dementia.
The Chief Executive
of the Down's Syndrome Association (DSA), Carol Boys, attended a recent
meeting of the DDREG Dementia Group. She suggested that the DSA
is happy to be a joint applicant on research bids. The screening
checklist being researched by Sarah Whitwham is a possibility.
Stephen Brown has
been invited to talk to the Minister for Health in January through the
DSA.
The DSA have organised
a study day in Plymouth on the 14th January 2005 and Stephen
Brown has been asked to present. The day does not seem to have been
well publicised.
Stephen Brown is
a member of the NICE Guideline Development Group, which is revising
the guidance on anti-dementia medication. This will not be issued
until 2006. Separately the Health Technology Assessment group
is examining the use of drugs to combat Alzheimer's disease, which
seems not to involve input from LD specialists.
Epilepsy Studies
Stephen Brown
reported.
Stephen had recently
returned from presenting two posters at a meeting of the American Epilepsy
Society in New Orleans. One concerned 'rescue medication'
which is likely to result in collaboration with colleagues in Australia
and Glasgow to produce a consensus statement.
Stephen is part
of a group with the International League Against Epilepsy looking at
cognitive outcomes.
Stephen had made
a presentation on the telemedicine research to the NHS Modernisation
'Action on Neurology' national conference.
Methodology group
In the absence
of Tony Gilbert there was no report. It was decided to ask Tony for
feedback on progress for the next Steering Group meeting.
Action:
JMcB
5.
DDREG website
The planned
DDREG pages in the PenMent website (<a href=http://www.sword.nhs.uk/www.sword.nhs.uk) need attention, but there has been
no news about the development for some time. Decisions are required
regarding the material that will feature. A number of possibilities
were raised including contact numbers, minutes of DDREG meetings, announcements
of conferences and the DDREG newsletter. The Plymouth Primary Care Trust
logo has been sent to the web site designers for inclusion, by Mary
McClarey.
6.
University of Plymouth update
John Clibbens
reported:
John's faculty
had been successful in gaining windfall funding to set up a centre for
health and social care inter-disciplinary innovation and research.
This had led to the setting up of a group called HIIR with a website <a href=mailto:CHIR@UPCHIR@UP. There is to be a free launch conference
March 10/11th 2005.
After discussion
it was agreed DDREG would request a 1.5 hour slot for a symposium at
this conference, which would include presentations on the Down's Syndrome
prospective screening programme (JMcB), parenting research (Sue McGaw),
and ASD (Mary Lindsey).
Action:
SB and JMcB liase with JC
Action:
JC email the details of HIIR and conference to members.
7. Budgets
Negotiations
are underway to move DDREG funds from PMS to the University of Plymouth.
8. Training
events: April conference
8.1 This
is a two day conference on the 7th & 8th of
April 2005 Exeter. A preliminary flyer had been sent out by Janssen-Cilag
but this did not seem to include Plymouth.
8.2 Registration
forms will be sent out in January when the final programme is confirmed.
Unfortunately Prof Prasher is no longer able to make a presentation.
It was agreed that Stephen Brown will make that presentation (Down's
Syndrome) and he will find an alternative person to present on epilepsy.
Action:
SB
8.3 Hazel
Lawson suggested that the South West Special Educational Needs Regional
Partnership should receive the flyer as they have a distribution list
of people in education who may be interested in attending.
8.4 There
was a discussion of literature that might be on show/sale at the conference.
Action:
SB to book publishers
9. Any other
business
JMcB has renewed
DDREG's subscription to IASSID for a further two years.
Kay Woodwood expressed
an interest in becoming part of the ASD group.
It was reported
that SWAN (South West Autism Network) appears to be foundering following
the departure of the organiser.
9.4 Marion
Nash and Gaye Powell are planning research on empowering parents of
learning disabled children to enhance language skills. A group is planned
for parents of children up to 3 years old to examine current services
and plan to fill gaps. A meeting is planned for 19th
of January for anyone interested. Contact Marion.Nash@plymouth.gov.uk.
9. Dates
of next meetings
Mon March
14th 2005 1.00-3.00
Mon June
13th 2005 1.00-3.00
Mon Sept
19th 2005 1.00-3.00
Mon Dec
5th 2005 1.00-3.00
Venue: Room
8, PMS Headquarters, Tamar Science Park, Plymouth.
1* Need further information/want to
join? Contact Dr Judith McBrien <a href=mailto:judith.mcbrien@pcs-tr.swest.nhs.ukjudith.mcbrien@pcs-tr.swest.nhs.uk
01752 314333 or Prof Brown <a href=mailto:stephen.brown@cornwall.nhs.ukstephen.brown@cornwall.nhs.uk 01208 256233).
Developmental Disability Research & Education Group
Developmental Disability Research
& Education Group
A partnership
of health 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*.
Minutes
of DDREG Steering Group
December
10th 2004 PMS ITTC 1000-1200
Present
Prof. Stephen
Brown, Chair (Cornwall PT)
Dr Judith McBrien
(Ply PCT)
Dr John Clibbens
(UoP)
Margaret Cushen (Devon Partnership
Trust)
Dr Sarah Whitwham
(Ply PCT)
Dr Sue McGaw
(Cornwall PT)
Dr Mary Lindsey
(Cornwall PT)
Tracey Salvidge,
Research Assistant (minutes)
Tom Shaw (Research
Assistant Cornwall PT)
Kay Woodwood
(ASD Advocacy Group, Plymouth)
Hazel Lawson (Principal Lecturer
in Education, UoP)
Apologies
Liz Piper (Cornwall
PT)
Mary McClarey
(R&D, Ply PCT)
Dr Sarah Newton
(Ply PCT)
Suzanne Smith
(Ply PCT)
Andrew Bratt
(DPT)
News of members
Kay Woodward,
a parent carer and organizer of an advocacy group for parents of people
with ASD in Plymouth, Hazel Lawson, Principal Lecturer in Education
at UoP, and Tom Shaw, Research Assistant to Sue McGaw were welcomed
to their first meeting.
Minutes of September
24th 2004
accepted.
Matters Arising
The invitation to
Kathy Mittler, the lead for long-term conditions with the Strategic
Health Authority and involved in the Directorate of Workforce and Learning,
was yet to be made. It was agreed that SB
will invite
her to the next DDREG Steering Group to discuss the potential for research
into inequity in health care for people with learning disabilities.
Action:
Stephen Brown to invite
3.2 Stephen
Brown informed the group that he now has part time secretarial help
for research and asked that minutes be copied to Mandy.Bryant@cpt.cornwall.nhs.uk.
3.3 Chris
Harris, professor of neuro-science at UoP is yet to be invited to address
DDREG on his research.
Action:
Stephen Brown to invite
Reports from
sub-groups/research areas
Autistic Spectrum
Disorder Group
Mary Lindsey
reported.
The study of diagnostic
practice continues, although the level of response has been limited.
Concerns were raised that health professionals do not have the time
or resources available to collect data. As a result, the time
allocated for the project has been extended. Nick Morley has begun analysis
on collected data. A number of families in Cornwall have expressed
their willingness to become involved in future research.
The Duchy Trust
has generously awarded the project a further £15,000.
There was discussion
of how to provide supervision of a research assistant for ASD research
within DDREG as none of the experienced clinicians have time to provide
this. The possibility of Dr Elspeth Bradley (newly appointed Consultant
Psychiatrist in Cornwall) taking on some aspects of ASD research is
anticipated. She will be invited to join DDREG when she arrives next
Spring.
Action:
Stephen Brown
The Autism sub-group
will be meeting today and addressing these issues.
Forensic Studies/Adult
Protection
Judith McBrien
reported.
The study into the
long-term consequences of 'personal relationship' interventions
continues, with twelve interviews now complete.
The completed study
on characteristics of offenders and non-offenders with LD still needs
writing up.
Data collection
for the MREC on men with learning disabilities who sexually offend is
continuing.
No Forensic group
is meeting at present. One could be arranged if anyone is interested.
Judith McBrien is the contact point.
Mainstream Access
research
4.3.1 Liz
Piper will no longer be able to attend meetings as of January 2005 following
increased work pressure and clashes with the amended meeting day. It
was hoped that Liz would remain DDREG's contact point for research
concerned with mainstream access,
Action:
Stephen Brown speak to Liz Piper
Parents with
Learning Disabilities
Sue McGaw introduced
Tom Shaw, the new research assistant working with her. Tom is assisting
with writing up completed research.
Sue is working on
research into fathers with learning disabilities and intends to present
this at the conference in Barcelona next autumn.
The Parenting Manual
written by Sue McGaw is being revised and extended to four other countries.
Sue is supervising
a clinical psychology doctoral student at City of London University,
studying attachment in parents with a learning disability.
The complexities
of getting such research through ethics committees was discussed.
Sue recommends personal attendance by the researcher at LREC meetings
to answer some of the simpler questions that arise. It was mooted
whether DDREG might attempt to raise the awareness of LRECs concerning
research with people with LD, perhaps by approaching the national organisation
British Institute of Learning Disabilities.
Dementia in
Down's Syndrome Group
Judith McBrien
reported.
The write up of
studies presented at conferences is yet to be completed.
It was decided against
using the epidemiologist at UoP to assist with data analysis.
Help from a statistician is being sought instead.
JMcB has submitted
a paper to the Tizard Learning Disability Review on the prospective
screening project. It is out to peer review at present.
Sarah Whitwham has
convened a meeting for later today looking to formulate a proposal for
a new study concerned with the capacity of residential homes to care
for service users with dementia.
The Chief Executive
of the Down's Syndrome Association (DSA), Carol Boys, attended a recent
meeting of the DDREG Dementia Group. She suggested that the DSA
is happy to be a joint applicant on research bids. The screening
checklist being researched by Sarah Whitwham is a possibility.
Stephen Brown has
been invited to talk to the Minister for Health in January through the
DSA.
The DSA have organised
a study day in Plymouth on the 14th January 2005 and Stephen
Brown has been asked to present. The day does not seem to have been
well publicised.
Stephen Brown is
a member of the NICE Guideline Development Group, which is revising
the guidance on anti-dementia medication. This will not be issued
until 2006. Separately the Health Technology Assessment group
is examining the use of drugs to combat Alzheimer's disease, which
seems not to involve input from LD specialists.
Epilepsy Studies
Stephen Brown
reported.
Stephen had recently
returned from presenting two posters at a meeting of the American Epilepsy
Society in New Orleans. One concerned 'rescue medication'
which is likely to result in collaboration with colleagues in Australia
and Glasgow to produce a consensus statement.
Stephen is part
of a group with the International League Against Epilepsy looking at
cognitive outcomes.
Stephen had made
a presentation on the telemedicine research to the NHS Modernisation
'Action on Neurology' national conference.
Methodology group
In the absence
of Tony Gilbert there was no report. It was decided to ask Tony for
feedback on progress for the next Steering Group meeting.
Action:
JMcB
5.
DDREG website
The planned
DDREG pages in the PenMent website (<a href=http://www.sword.nhs.uk/www.sword.nhs.uk) need attention, but there has been
no news about the development for some time. Decisions are required
regarding the material that will feature. A number of possibilities
were raised including contact numbers, minutes of DDREG meetings, announcements
of conferences and the DDREG newsletter. The Plymouth Primary Care Trust
logo has been sent to the web site designers for inclusion, by Mary
McClarey.
6.
University of Plymouth update
John Clibbens
reported:
John's faculty
had been successful in gaining windfall funding to set up a centre for
health and social care inter-disciplinary innovation and research.
This had led to the setting up of a group called HIIR with a website <a href=mailto:CHIR@UPCHIR@UP. There is to be a free launch conference
March 10/11th 2005.
After discussion
it was agreed DDREG would request a 1.5 hour slot for a symposium at
this conference, which would include presentations on the Down's Syndrome
prospective screening programme (JMcB), parenting research (Sue McGaw),
and ASD (Mary Lindsey).
Action:
SB and JMcB liase with JC
Action:
JC email the details of HIIR and conference to members.
7. Budgets
Negotiations
are underway to move DDREG funds from PMS to the University of Plymouth.
8. Training
events: April conference
8.1 This
is a two day conference on the 7th & 8th of
April 2005 Exeter. A preliminary flyer had been sent out by Janssen-Cilag
but this did not seem to include Plymouth.
8.2 Registration
forms will be sent out in January when the final programme is confirmed.
Unfortunately Prof Prasher is no longer able to make a presentation.
It was agreed that Stephen Brown will make that presentation (Down's
Syndrome) and he will find an alternative person to present on epilepsy.
Action:
SB
8.3 Hazel
Lawson suggested that the South West Special Educational Needs Regional
Partnership should receive the flyer as they have a distribution list
of people in education who may be interested in attending.
8.4 There
was a discussion of literature that might be on show/sale at the conference.
Action:
SB to book publishers
9. Any other
business
JMcB has renewed
DDREG's subscription to IASSID for a further two years.
Kay Woodwood expressed
an interest in becoming part of the ASD group.
It was reported
that SWAN (South West Autism Network) appears to be foundering following
the departure of the organiser.
9.4 Marion
Nash and Gaye Powell are planning research on empowering parents of
learning disabled children to enhance language skills. A group is planned
for parents of children up to 3 years old to examine current services
and plan to fill gaps. A meeting is planned for 19th
of January for anyone interested. Contact Marion.Nash@plymouth.gov.uk.
9. Dates
of next meetings
Mon March
14th 2005 1.00-3.00
Mon June
13th 2005 1.00-3.00
Mon Sept
19th 2005 1.00-3.00
Mon Dec
5th 2005 1.00-3.00
Venue: Room
8, PMS Headquarters, Tamar Science Park, Plymouth.
1* Need further information/want to
join? Contact Dr Judith McBrien <a href=mailto:judith.mcbrien@pcs-tr.swest.nhs.ukjudith.mcbrien@pcs-tr.swest.nhs.uk
01752 314333 or Prof Brown <a href=mailto:stephen.brown@cornwall.nhs.ukstephen.brown@cornwall.nhs.uk 01208 256233).