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Challenging Behaviour – National Strategy Group (CB-NSG)

Information from meetings

Introduction:

The Challenging Behaviour- National Strategy Group (CB-NSG) hold two national meetings each year. Below is a summary of each meeting, links to presentations, action plans and other relevant information. For further details contact: nationalstrategygroup@thecbf.org.uk

4th October 2011

The Challenging Behaviour – National Strategy Group (CB-NSG) meeting on the 4th October 2011 focussed on the human rights of individuals with learning disabilities and challenging behaviour. It was the first chance to discuss these issues since the Panorama documentary “Undercover care: the abuse exposed” had revealed the ill-treatment of individuals at Winterbourne view.

The meeting began with David Behan (Director General for Social Care, Department of Health) providing details of the Department of Health review following Winterbourne View. Dame Jo Williams (Care Quality Commission) then spoke about the CQC’s ongoing review of 150 learning disability services, as a reaction to the Panorama documentary.

Andy Bradley (Frameworks 4 Change) screened a trailer for a new film “Everybody Matters” to be produced to raise awareness and to urge authorities to provide the support and services needed. Vivien Cooper (CBF) and Rob Greig (NDTi) led a discussion on the “Caring for Our Future” consultation and agreed a response from the CB-NSG. Karyn Kirkpatrick (Housing Options) & Jo Poynter (SE Strategic Health Authority) led a group outlining housing and Mental Health Act issues that have been identified in the wake of the Panorama documentary to add to “Time for Action” and to feed into the Department of Health review.

Following this, Angela Robinson (Family carer) gave a family’s perspective on moving from institutional care to supported living. Liz Bruce (ADASS Policy Network) then talked about the priorities in providing good quality care for individuals with challenging behaviour.

Dr Sarah Bernard (Maudsley Hospital) & Dr Peter Baker (Sussex Partnership NHS Foundation Trust) launched 2 new resources for commissioners: “Services for children and young people who display challenging behaviour. Well matched skilled staff” and “Services for adults with learning disabilities who display challenging behaviour. Well matched skilled staff”. Sophy Miles (Miles & Partners) then gave a talk on the legal rights of individuals with learning disabilities and Amanda Platts (Co-chair, National Forum) discussed the importance of including people with learning disabilities and explained the work the national forum have done with the CQC.

3 action planning groups took place simultaneously. The Campaign Subgroup, led by Beverley Dawkins (Mencap) & Roger Banks (Royal College of Psychiatrists), identified key campaigning messages and outlined a campaign plan. Two other action plans were drawn up by a group facilitated by Dr Sarah Bernard (Maudsley Hospital) & Jo Poynter (SE Strategic Health Authority) on Time for action: Commissioning, Supporting staff & Checking services and a group facilitated by Jill Davies (FPLD) & Peter McGill (Tizard Centre, University of Kent) on Time for action: Human rights, Good care companies & Visitors and advocates.

Finally, Stephen Davidson (Tizard Centre, University of Kent) presented a study on the role of Intensive Support Teams and encouraged participation and Geoff Baines (SW Strategic Health Authority) spoke about NHS Commissioning after Winterbourne View and the actions taken.

11th March 2011

On the 11th March 2011 a meeting of the Challenging Behaviour – National Strategy Group (CB-NSG) was held focussing on current issues and policy for people with learning disabilities and behaviour described as challenging.

Cally Ward (Family carer lead, Valuing People) opened the proceedings by emphasising the importance of working in partnership with families. Professor Jim Mansell (Tizard Centre) then spoke on the subject of support for individuals with behaviour described as challenging in the current economic environment.

Following this Bruce Calderwood (Director of Mental Health and Disability, Department of Health) joined CB-NSG members to outline the current policy context and opportunities for individuals with complex needs.

A workshop focusing on The World Health Organisation declaration “Better health, better lives: children and young people with intellectual disabilities and their families” led by Dr Roger Banks (Royal College of Psychiatrists) produced a list of priorities to feed into the CB-NSG response to this consultation about UK progress.

In parallel a workshop focussing how family carers can raise complaints effectively, led by Jackie Edwards (Family carer) produced a number of suggestions for revisions to an information sheet for family carers which will be published at the next CB-NSG meeting.

Hugh Constant (SCIE) launched three new ‘At-a-glance’ guides for family carers supporting people whose behaviour is described as challenging, developed by CB NSG members. Click here for more information.

Dr Umesh Chauhan reported his research findings on how health checks are working for people with learning disabilities and carers and Professor Eric Emerson explained the potential benefits of prevention and early intervention.

Action planning work for the group focussed on planning and commissioning collaboratively “Children’s and adult’s services will construct long term collaborative plans across education, social and health services and jointly develop and commission support and services to meet the needs of children and adults with learning disabilities, their families and carers”. To view the action plan or any of the presentations from the meeting, please click on the links below.

Finally a “Question Time” Panel discussed key issues arising from the meeting including the importance of intervening early and a number of suggestions were made for how to take these forward.

Written updates were provided by the steering group documenting all the progress since the last CB-NSG meeting.

Agenda
Keep Thinking Families
The age of austerity
World Health organisation declaration
World Health Organisation presentation
Raising complaints effectively
Bruce Calderwood presentation
Bruce Calderwood questions 1
Bruce Calderwood questions 2
Bruce Calderwood response
Health checks
Prevention
Action plan
Question Time
Updates from the steering group

10th September 2010

The focus of the September 2010 CB-NSG meeting was on 3 of the charter topics health, workforce and evidence based practice. Audrey Giles, family carer shared her lived experience on these issues.

Ben Dyson (Director of Primary Care, Department of Health) explained how individuals who display challenging behaviour will be included in the new NHS commissioning arrangements.

Professor Eric Emerson explained the role of the newly established Improving Health & Lives: Learning Disabilities Observatory and the opportunities available to link with this work.

Dr Sarah Bernard (South London & Maudsley NHS Foundation Trust) highlighted the mental health needs of children and adolescents with challenging behaviour and the lack of appropriate learning disability service provision.

Peter McGill & Jo Poynter presented data gathered on high cost placements, Dr Sarah Bernard presented a draft pamphlet for commissioners highlighting the importance of well matched and skilled staff. Vivien Cooper led a discussion which led to a CB-NSG response to the Carers Strategy Refresh.

Members of the CB-NSG developed three further action plans workforce, evidence based practice and health. All presentations and action plans can be downloaded by clicking on the links below.

Written updates were provided by the steering group documenting all the progress and key achievements since the March 2010 meeting.

Agenda
Ben Dysons presentation
Eric Emersons presentation
Workforce action plan
Evidence based practice action plan
Health action plan
Audrey Giles presentation
Sarah Bernard presentation
Peter McGill’s presentation
Updates from steering group

19th March 2010

The meeting began with updates from Viv Cooper and Kate Hardy (DoH) who updated members on progress with the Valuing People Delivery Plan and the Autism Strategy respectively. Updates were also provided by the steering group on CB-NSG actions completed since the last meeting in November.

Catriona Moore (SCIE) & Lisa Hopkins (Dimensions) outlined details of 2 new resources being produced in collaboration with the CB-NSG and received feedback from members.

Jan (Family carer) shared her son Andrew’s experiences, highlighting the impact of restrictive practices and service failures in the education system as well as the positive impact of personalised, local support with the use of a direct payment. Following this, CB-NSG members began action planning on three more topics from the charter:

1. Reducing restrictive behavioural practices
2. Personalisation
3. Local support and services

In the final presentation of the day Professor Tony Holland (Cambridge University) spoke on the topic of understanding a person’s challenging behaviour, emphasising the need for a holistic approach including appropriate assessment and treatment of physical and mental health.

Presentations and related papers can be downloaded by clicking on the links below:

Click here to view agenda
Reducing restrictive behavioural practices action plan
Local support and services action plan
Personalisation action plan
Presentation – CB-NSG Updates
Outline from SCIE
Outline of Capable Environments
Presentation – Andrew’s story
Presentation – Understanding challenging behaviour

6th November 2009

Priority areas were identified from the charter by asking members to rank the charter action points in order of priority. At the November 2009 meeting comprehensive work plans were developed across the three chosen areas:

1. Planning, commissioning & Monitoring

2. Early Intervention

3. Families

Each action plan identified three types of action: evidence gathering, best practice and awareness raising. An overview diagram to demonstrate how the actions are connected and link into the overall influencing plan which is under development has been created.

Examples of the actions include:
• A best practice Pathway mapping out the support for individuals with severe learning disabilities and behaviour described as challenging and their family carers (British Psychological Society & Royal College of Psychiatry).
• A best practice pamphlet aimed at commissioners to describe the factors that led to a capable environment for individuals who challenge services (Dimensions)
• A suite of pamphlets for family carers on the support they should receive at different stages of their relative’s life (Social Care Institute for Excellence).

Presentations and related papers can be downloaded by clicking on the links below.

Click here to view the agenda
Overview
Families action plan
Planning, Commissioning & Monitoring action plan
Early intervention action plan
Record of discussion: direction of CB-NSG
Record of discussion: research/practice interface
Presentation – Why do we need a strategy group
Presentation – What is the problem

24th April 2009

A second meeting of the CB-NSG was held in April 2009 which started with a presentation from Sally, an individual with an autism spectrum condition who described how others had perceived her behaviour and how this led to a string of exclusions and placements further and further away from her family home. Sally explained how there was a strong focus from professionals involved in her life on trying to change her behaviour rather than looking at her environment and how she was supported.

David Allen (Cardiff University) followed with a presentation on preventing challenging behaviour which highlighted the present focus is on tertiary intervention, when crisis point has already been reached. He concluded there needed to be a stronger focus on primary and secondary prevention and research on the cost of not acting would be useful to make the case for early intervention.

Building on discussions at the previous meeting and utilising the skills and experience of a wide range of stakeholders a charter was developed which sets out the human rights based aims and principles of the group as well as identifying what action needs to be taken. Stakeholders felt it was particularly important to emphasise the human rights of people who challenge services. Often current services fail to see beyond the behaviour and focus on trying to change the behaviour rather than on what needs to change around the individual, (such as their environment or how people support them).

The charter was agreed as an important landmark for the National Strategy Group, setting out shared values and enabling a comprehensive work plan to be developed based on the charter actions.

Finally stemming from the Valuing People Now scoping exercise Peter McGill led a discussion on the drivers of commissioner behaviour.

Presentations and related papers can be downloaded by clicking on the links below.

Click here to view the agenda
Developing the Charter 1
Developing the Charter 2
VPN Work Programme 1
VPN Work Programme 2
Presentation - VPN Work Programme
Presentation - Preventing Challenging Behaviour
Presentation - Care Pathways
Presentation - A personal Story

7th November 2008 (launch meeting):

The Challenging Behaviour Foundation launched this action focussed group in November 2008 as it was uniquely positioned, building on it’s work of the last eleven years with children, adults, families, professionals and with a wide range of organisations and groups. Vivien Cooper (Chair of Trustees) opened the meeting, setting the scene by describing some of the experiences of families who contact the Challenging Behaviour Foundation.

The meeting was well attended by a range of senior level stakeholders. Jill Davies (Foundation for People with Learning Disabilties) led a mapping exercise to gather information on the range of services, research, publications and innovations for children and adults who challenge services.

Led by Theresa Joyce and Alick Bush (British Psychological Society) a collective commitment was given by the stakeholders present at the meeting to work together through the National Strategy Group. It was agreed to begin this work by developing a shared vision of what support should look like for people who challenge services and their families.

Presentations and related papers can be downloaded by clicking on the links below.

Click here to view the agenda
Presentation - Getting it wrong
Presentation - What it is like for families
Presentation - The Vision, what should it be like?

To view the charter click here

If you would like to sign up click here to download a sign up form