THE CHALLENGING BEHAVIOUR NATIONAL STRATEGY GROUP REPORT CBNSG As we approach the general election there will be a period of uncertainty and change, and it is essential that this does not further delay the transformation work that needs to happen. The CB-NSG is an outcome and solution focused collective. Its members have committed to work together to drive change that results in better lives for children and adults with learning disabilities who display behaviour described as challenging. This report has been written to record the activity of the group, achievements so far and priorities moving forward. This report summarises the purpose and work of the CB-NSG since it was founded in 2008.
Transcript
THE
CHALLENGING
BEHAVIOUR
NATIONAL
STRATEGY
GROUP REPORT
CBNSG As we approach the general election there will be a period of uncertainty and change, and it is essential that this does not further delay the transformation work that needs to happen. The CB-NSG is an outcome and solution focused collective. Its members have committed to work together to drive change that results in better lives for children and adults with learning disabilities who display behaviour described as challenging. This report has been written to record the activity of the group, achievements so far and priorities moving forward.
This report summarises the purpose and work of the CB-NSG since it was founded in 2008.
Challenging Behaviour National Strategy Group March 2015
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Challenging Behaviour National Strategy Group March 2015
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The Challenging Behaviour – National Strategy Group (CB-NSG) was founded in 2008 as a national
action focussed initiative in the field of learning disability and challenging behaviour.
It aims to bring together key stakeholders to coordinate and plan strategically in order to make a
difference to the lives of children and adults with learning disabilities whose behaviour is
described as challenging.
It was developed due to the absence of any body or organisation tasked with providing an
overview of all the various strands of work taking place across the country and across all ages.
It is based on a strong ethos of partnership working. The formation of the CB-NSG grew out of
discussions with a range of stakeholder organisations and individuals.
The CB NSG is a collaborative that is resourced through contributions from members (time and
resources) as well as donations.
Membership
The group includes representatives from professional
bodies, networks, charities and the government
alongside family carers, people with learning disabilities
and researchers.
It is based on the principle that if all the
individuals and organisations who have a role to
play in supporting children and adults with
learning disabilities whose behaviour is described
as challenging work together in a coherent and
coordinated way it will deliver better
outcomes for this group of people.
The figure to the right
illustrates membership
diversity (as of February
2015). It is not
exhaustive, but provides an overall
picture of the groups and individuals affiliated with the CB-
NSG.
What members have said about the CB-NSG
“[It is] Good to meet with like-minded people
outside of the constraints of normal organisational
settings; also the chance to work across
organisational boundaries and to form
partnerships”
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“It engages with an excellent range of stakeholders, and drives policy, but keeps the focus of
attention on individual service users and their families.”
“[The meetings have] Varied speakers, with key people present, a friendly atmosphere and [they
are] brilliantly organised.”
“It’s the one place I can think of where everyone gets together and really thinks about what needs to
happen.”
Charter
The CB-NSG Charter was co-produced in 2008 and published in 2009,
followed by an easy read version in 2010.
The charter was developed because “we know that much better
support and services can be provided for children and adults who are
perceived as challenging”. The charter sets out the rights of these
individuals (including: human rights - early identification, intervention &
support - freedom from abuse – care & support based on up to date
evidence) and the action that needs to be taken (please see the full
charter for further information).
By signing up to the charter, organisations and
individuals are endorsing the rights of these
individuals and committing to working in
partnership with the National Strategy Group to
influence real change.
A graphic detailing the sign-up since the charter
was created in 2009 can be found to the left.
The number of organisations and individuals
signing up has been consistent and does not
show signs of slowing down.
The charter is a unique document that sets out
the rights of people with learning disabilities,
the values on which support and services should
be based and, most importantly, the actions
that need to be taken to improve the quality of care people with learning disabilities and behaviour
described as challenging receive. The charter represents shared values and unites a diverse range of
stakeholders – it continues to be relevant today. The charter is a living document and is updated as
necessary.
The significance and relevance of the charter is testified by its inclusion in
various policy documents that have been produced in the last few years.
“To make the rights that people with learning disabilities and/or autism and their
families already have feel real, we recommend that the Government should set out a
Charter of Rights for people with learning disabilities and/or autism – and then require
commissioners to shape local services around those rights. Any such charter should build
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on existing work (such as the ‘We Have the Right’ statement put together by people with learning disabilities
with support from CHANGE for the purposes of this report, or the Challenging Behaviour Charter drawn up by
the Challenging Behaviour National Strategy Group…)” – Winterbourne View – Time for Change, A report by
the Transforming Care Steering Group, Chaired by Sir Stephen Bubb (2014).
National Meetings
Core members of the group meet bi-annually, focusing on a particular theme/project. The aim of
each meeting is to develop action plans for the group which includes the input of all stakeholders.
Date Theme Key Outcome(s)
November 2008
Launch Strong support for the initiative The mapping of services, research, publications & innovations
April 2009 Charter development
November 2009
Identification of priorities from the charter. Comprehensive work plans were developed across:
1. Planning, Commissioning & Monitoring 2. Early Intervention 3. Families
March 2010
Planning around: 1. Reducing restrictive behavioural practices 2. Personalisation 3. Local support and services
September 2010
Health, Workshops & Evidence Based Practice
Action plans for each of the theme topics
March 2011
Current issues & policy CB-NSG consultation response to WHO ‘Better Health, Better Lives’ SCIE at a glance guides. Action planning focussed on planning and commissioning collaboratively
October 2011
Human Rights Everybody Matters Film Project advert/launch Caring for Our Future consultation & Time for Action Report production Action planning:
1. Campaign Subgroup 2. Commissioning, supporting staff & checking services 3. Human rights, good care companies, visitors & advocates
Department of Health review & how the issues raised at Winterbourne will be addressed
Action planning: 1. Safeguarding 2. Commissioning 3. Practical support for families
March 2013
Unified Approach (refresh) & how policy can be transformed into action
Member input into chapters of unified approach (6 sessions, each focussing on a different chapter) CB-NSG Improvement board representation
October 2013
Making a difference locally Inputting views & developing action plans on: 1. JIB: Local expertise 2. JIB: Providers 3. DH funded project: Early Intervention 4. Guidance on Commissioning workforce development for workers who
may need to carry out physical intervention
March 2014
Children First Early intervention – priorities for change Positive Behaviour Support: developing a competent workforce
October 2014
Skills, Leadership & Development Action planning around: 1. Translating the 5 good communication standards into practice 2. Adult Intensive Support Teams 3. PBS Academy
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Resources & Publications
The CB-NSG has developed and inputted into a number of resources (the following list is not
exhaustive):
Time for Action, June 2011
The Social Care Institute for Excellence “at a glance” guides for family carers:
Living with a child with challenging behaviour: getting the right support Living with a teenager with challenging behaviour: getting the right support
Living with an adult with challenging behaviour: getting the right support
Pamphlet for Commissioners: Well Matched and Skilled Staff (children & young people; adults)
Everybody Matters (DVD)
Out of Sight
Learning Disability Census 2013 Infographic
Learning Disability Census 2014 Infographic
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Influencing Work
The CB-NSG aims to collectively drive change forward including actively influencing those who have
the opportunity to make change happen. The CB-NSG Campaign subgroup was founded in 2011 and
is chaired by Mencap. The subgroup is made up of members from the wider CB-NSG, its work is
closely linked to our influencing activity. The diagram below highlights some of the key areas where
the CB-NSG has collectively driven change.
Influencing Activity
APPGs
NAO Report &
PAC Hearing
Meeting with
families
Media Activity
“We don’t just
want this
[change] for our
sons/ daughters.
We want this for
everybody”
After the shocking Panorama documentary into the abuse at Winterbourne View the CB-NSG highlighted the issues, identifying
what needed to change. With others it has collectively ensured they remain on the agenda nearly four years later (after the
government failed to deliver the progress required). CB-NSG has an elected representative on the Board overseeing the
Winterbourne View work and has successfully pressed for improved data collection, tracking of ex-Winterbourne View
patients and the formation of a children’s subgroup.
Following a number of serious concerns raised by the CB-NSG, families
and campaigners, the National Audit Office (NAO) announced an
inquiry into the care of people with learning disabilities who display
behaviour described as challenging. The CB-NSG steering group and
members provided evidence to the NAO. The report was scathing and
led to scrutiny by the Public Accounts Committee (PAC). Vivien Cooper
& David Congdon acted as witnesses to the oral evidence sessions.
During the PAC, NHSE committed to a closure programme.
We have supported a number of families in
meetings with various senior officials from
the government including the Minister for
Social Care services, NHS, ADASS and other
organisations. These meetings have been
significant in driving change and most
importantly enabling ‘officials’ to understand
the day to day reality of the lack of progress.
The CB-NSG has
secured two APPG
discussions about
the needs of
people with
learning
disabilities and
behaviour
described as
challenging this
helps to keep the
profile of this
group of people
high on the
agenda across all
political parties.
We were able to significantly influence and
strengthen the final report. Despite constant
pressure, the potential opportunities it
presented were not realised and did not
translate to improved outcomes for people
with learning disabilities who display
challenging behaviour.
Our media work has been important in influencing
on a broader level. We have kept media attention
since the Winterbourne View documentary. We
have supported families to speak to the media
and developed relationships with journalists. We
have had significant coverage in national
newspapers, television and radio, to ensure that
children and adults with a learning disability who
display behaviour described as challenging are not
out of sight.
Post Winterbourne
Discussion
Final Transforming Care Report
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Conclusion
The CB-NSG has been recognised by several bodies as an effective and respected working group. A
particular achievement has been our ability to use the group to respond effectively to the airing of
the Winterbourne View documentary, other scandals since, and particularly for continuing to apply
pressure to keep the Winterbourne View issues on the agenda. There is still an awful lot to do.
Our priorities moving forward are:
Early intervention and prevention
Influencing the proposed closure programme: ensuring it is safe, effective and accompanied
by the development of community care.
Skilling up the workforce.
As this report has highlighted, the CB-NSG is the only group that brings together this diversity of
stakeholders. It is action focussed and has delivered practical resources. Above all, it keeps
awareness raised in a collaborative, solution focussed way.
As we move into a period of uncertainty, with a pending election, it is essential that we continue to
drive forward the changes required.
Now in our 8th year, the CB-NSG will continue to improve the lives of children and adults with
learning disabilities who display behaviour described as challenging:
“Members of the CB NSG have committed to take action to deliver change. None of us are satisfied
with the current situation, and we all want action taken now. The change we all want to see is not a
“quick fix” – it is a culture shift; it is change management of complex multi-agency systems and
processes– and it requires sustained attention. CB NSG members have committed to work together,
to identify barriers and ways to overcome them- on an individual, systemic and strategic level.
Together we have been able to keep the pressure on, through various ways and means - sometimes
publicly, sometimes behind the scenes, sometimes for one person, sometimes for many - to raise the
profile of and improve the outcomes for children and adults with learning disabilities who display
behaviour described as challenging. We know what to do and we know how to do it – we have a
collective responsibility, and by working together there is a greater chance of success – for everyone
everywhere. In the months and years ahead, CB NSG members will continue commit time and energy
to getting children and adults the right support, in the right place at the right time”
