University College London
December 2014
Volume 4, Issue 1
Positive Behaviour Support
Recruitment Update
Clinical and Cost Effectiveness of Positive Behaviour Support: A
Multicentre Randomised Controlled Trial
We have now reached our recruitment target of 246 participants and
we have closed recruitment. We would like to thank you all for your
hard work and continued support! Your support is invaluable!
We have also completed 6 month follow-up assessments with:
208 study participants
And 12 month follow-up assessments completed with:
INSIDE THIS ISSUE
Recruitment
update .................. 1
Which Sites Are
Taking Part and the
Local
Investigators………..2
PBS: A North East
London
Perspective………....3
140 study participants
(As of the end of November 2014)
We would like to wish all of the participants, families,
CSOs, local investigators, volunteers and support staff
who have contributed so much to the study
over the past year a
Very Merry Christmas and A Happy New Year!
Thank you for all of your hard work!
Service users group
meeting…………….…4
Other Research: The
Shape-Up LD
Study…………………..5
PBS internet and
Twitter, links and
contact details ...... 6
With best wishes from all of the research team.
Staff Update
A very warm welcome to Alessandro Bosco who has joined the Positive
Behaviour Support team. Alessandro has recently completed his MSc in mental
health studies looking at autism, immigration and
ethnicity at Kings College London. He also has extensive
research experience gained in the USA where he attained
his second degree in psychology at Hunter College at City
University in New York. His work for the PBS study will
include the qualitative service user and staff interviews
looking at people’s views, experiences of the study and
the challenges of delivering the Positive Behaviour
Support study across the United Kingdom.
1
Which sites are taking part?
The trial is being conducted across several regions in England, which cover
urban, semi-urban and rural areas:
 Barnet Learning Disability Service
 Barking & Dagenham Learning Disability Service
 Havering Learning Disability Service
 Waltham Forest Learning Disability Team
 Bexley & Greenwich Learning Disability Services
 Bradford Learning Disabilities Service
 Camden Learning Disability Service
 Charnwood Community Learning Disability Team
 Coalville & Hinckley Community Learning Disability Team
 Leicester City (East) Community Learning Disability Team
 Leicester City (West) Community Learning Disability Team
 Market Harborough, Oadby & Wigston Community Learning Disability Team
 Coventry, South Warwickshire & Rugby Community Learning Disabilities Team
 Dartford, Gravesend & Swanley Mental Health of Learning Disability Service
 Medway Mental Health of Learning Disability Service
 East Surrey Community Team for People who have a Learning Disability
 Mid Surrey Community Team for People who have a Learning Disability
 South West Surrey, NE Hants & North West Surrey Community Team for People
who have a Learning Disability
 Enfield Integrated Learning Disability Service
 Hackney Learning Disability Service
 Islington Learning Disability Partnership
 Tower Hamlets Community Learning Disability Service
 Wandsworth Community Learning Disability Services
2
PBS: A North East London perspective
Hello all. We are Angeliki and Sheetal, CSOs based at North East London NHS
Foundation Trust (NELFT). We have been working on PBS since the very beginning and cannot
believe that the 12 month follow up stage has already begun for our final learning disability
team. It seems not so long ago that we were rushing around frantically trying to gather names
from teams, approaching them and following up with the initial baseline assessment!
The study has been running over three sites in North East London: Havering, Barking &
Dagenham, and Waltham Forest Learning Disability teams. As Imogen alluded to in the previous
newsletter article, we observed that participants (particularly family carers) found the
opportunity to reflect on their situation and their relationship with the person in their care, a
positive experience. Some reported it as being useful to speak to someone when perhaps there
is no clinical input from other teams.
Our Success
It is important to acknowledge the invaluable enthusiasm that our Principal Investigator, Dr Bini
Thomas has provided. She has been approachable and proactive in supporting this study and
this certainly reflected in our rapid recruitment rate. Many other team members found the
prospect of positive behaviour support training an inspiring incentive to become involved. They
believed that the psychological intervention may serve as a useful additional clinical tool in
their practice.
Early on, the leads for each team identified a list of potential participants who they had also
engaged before we contacted them. This helped when informing people about the aims of the
project and I am pleased to say that we have only had 4 out of 93 people drop out since
recruitment into the study.
That’s not to say we haven’t had our fair share of difficulties! The biggest difficulty indeed was
when the learning disability team had not made initial contact with the identified service users
and carers. We found this unhelpful and a strong barrier to recruiting confused residential
homes and carers. Another challenge came when very eager team leaders had unblinded us!
We then had to pass on some extra work to the poor study team, sorry!
The PBS team have been open and
understanding of our difficulties and have tried
their best to iron out any issues we
encountered. It has been a pleasure working
with them and it is hard to believe that we are
nearing the end of our PBS journey. We hope
that PBS is running smoothly in other Trusts too
and that we yield some important findings.
Authors: Angeliki Kassari, and Sheetal Dandgey Clinical
Studies Officers for PBS in North East London.
3
Service Users Group Meeting
There was a service users’ group meeting in October where the
group’s future involvement in disseminating the trial findings was discussed. In addition the study’s research assistants, Victoria Ratti and
Jessica Blickwedel, briefly presented their respective proposed PhD
and MSc projects.
Key feedback included:





The group are happy with how the study is progressing and commented positively on the number of participants seen to date.
The three group members present would all like to be involved in
writing about the project and one member already has experience in writing up research results for a different study.
The group also offered to help ensure that appropriate photo
symbols will be used.
They would like to get involved with presenting the study at conferences.
They would also like to help plan a day for people with LD to talk
about the study, e.g. by holding small groups and preparing materials.
The Service User Group
Jide Akinbiyi
Michaela
Musa
Sandy Smith
Author: Jessica Blickwedel
4
The Shape-Up LD Study: Piloting a manualised weight management programme for overweight and obese persons
with mild-moderate learning disabilities in an NHS Learning
Disability Service
Shape Up-LD is a group based self-help weight management programme for
adults with Learning Disabilities, and their carers where appropriate. The groups,
led by two facilitators, run for 12 weeks and cover various topics including food
groups, portion sizes and physical activity as well as promoting self-monitoring
and goal setting.
Our pilot study aimed to answer the question ‘Can we design a feasible, large
scale, randomised controlled trial that will answer the following question: 'Is
Shape Up-LD more effective than usual care in helping overweight and obese
service users with mild-moderate LD reduce body weight?'. We recruited 50
participants, mostly from Camden and Islington LD Services and randomised
them to participate in the Shape Up-LD Programme or to receive ‘usual care’.
Participants were followed up at 3 and 6 months. At Baseline and follow-up
assessments participants were weighed and measured, had their blood pressure
taken and answered a number of questionnaires.
In this pilot study we were interested in the recruitment rate, how the
participants found the assessments and how they felt about the groups, as well
as weight change.
We found that at 3-months the intervention group were 0.3kg lighter than the
control group, after controlling for baseline weight (the 95% confidence interval
was -2.4kg to +1.7kg). We found that we were able to recruit participants to the
study and we had positive feedback about the intervention from facilitators,
carers and participants.
We are continuing with our analyses to look at the
results in more detail.
If you would like any more information about the
study please contact Dr Phillippa Lally at:
p.lally@ucl.ac.uk
Author: Dr Pippa Lally, Research Psychologist
5
The PBS website:
www.ucl.ac.uk/positive-behaviour-support
Twitter account:
www.twitter.com/PBSstudy
University College London
Division of Psychiatry
Charles Bell House
67-73 Riding House St.
London W1W 7EY
Phone: 020 7679 9311
a.hassiotis@ucl.ac.uk
m.poppe@ucl.ac.uk
v.ratti.11@ucl.ac.uk
j.blickwedel@ucl.ac.uk
christopher.anderson@ucl.ac.uk
6