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making a difference to the lives of people with severe learning disabilities
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Challenging Behaviour – National Strategy Group (CB-NSG) Latest News
Berkshire Challenging Behaviour Event
On the 5th October representatives from the 6 different Learning Disability Partnership Boards in Berkshire joined in an event about challenging behaviour with the aim of raising awareness of the needs of people with challenging behaviour and considering how to work to achieve better outcomes for this group of people in the future. The event was chaired by Nick Buchanan (Head of Commissioning for Mental Health and Learning Disabilities—NHS Berkshire) who talked about the problems that people who display challenging behaviour face when they are not properly supported and end up in hospital or institutions. David & Jill Jack attended this event to talk about their life as family carers and the work of the CBF including the Challenging Behaviour National Strategy Group and Charter. Nigel Pilling and Malcolm Pearce from the Berkshire Health Care NHS Foundation Trust presented results from work they had carried out gathering information from people described as challenging in Berkshire.
To see a full report click here
Posted: 6th January 2012
Mencap and The Challenging Behaviour Foundation issue joint response to Care Quality Commission (CQC) report
Report reflects “very serious concerns about poor practices”
While these are just the first reports from the CQC’s review of services for people with a learning disability, they reflect our very serious concerns about poor practices at specialist assessment units, like Winterbourne View, for people with a learning disability. It is unacceptable, though unfortunately not unexpected that 4 of the 5 services are not fully compliant with essential quality and safety standards.
The report strongly illustrates that current safeguarding for adults with a learning disability is not fit for purpose. Mencap and The Challenging Behaviour Foundation are calling for the Government to speed up placing Adult Safeguarding on a statutory footing, so that all agencies involved are forced to take this seriously.
It is also inexcusable that the reports reveal a lack of understanding about what safe, person-centred care looks like when we know there is a lot of clear guidance on this.
We expect that all the reviews post-Winterbourne will provide a strong justification for moving away from institutional care to local services for local people. It is crucial the Government then does all it can to drive these changes through and thereby reduce the likelihood of such abuses happening again.”
Minister of State for Care Services Paul Burstow MP is due to issue a statement in Parliament at midday on Thursday 8 December 2011.
To view the full press release as a PDF click here
If you have concerns about a person with a learning disability click here for a list of organisations providing independent support
CQC publishes first reports from its review of services for people with learning disabilities
The Care Quality Commission (CQC) has published the first five reports from a targeted programme of 150 inspections of hospitals and care homes that care for people with learning disabilities.
Only one of the five services inspected was found to be fully compliant with the government’s essential standards of quality and safety required by law.
In the case of two services, Kent House and Townsend Court, major concerns were found in relation to safeguarding people who use service from abuse.
All the reports relating to this programme of inspections will be published in the coming months. The national report due to be published in the Spring will draw conclusions about the overall state of this type of service.
To view the CQC press release and reports in full click here
Channel 4 News Report on Anti-Psychotic Drugs
A channel 4 news report has uncovered an alarming rise in the amount of anti-psychotic drugs being prescribed to children and young people. The report reveals that the number of people under 18 on anti-psychotic drugs in the UK has doubled in the last 10 years to over 15,000. There appears to be no evidence that there has been a doubling in the rate of psychosis in this time and as a result these findings are very concerning.
The drugs, which have powerful side effects, are intended for use with patients with serious mental health conditions such as schizophrenia, bipolar disorder and psychosis. In some instances, parents have not been told of the side effects of the drugs and children have been left on them for several years without medical supervision despite this going against best practice guidelines.
To see the report click here:
Human Rights
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.
As this was the first meeting since the Panorma programme the day included a discussion on key issues that the CB-NSG would feed into the department of health review following Winterbourne View and an update from the CQC’s ongoing review of 150 learning disability services.
A short trailer was screened for a new film “Everybody matters” which aims to raise awareness of people labelled with challenging behaviour and their families. A CB-NSG response was agreed to the “Caring for Our Future” consultation and housing and Mental Health Act issues were identified to add to “Time for Action” to feed into the Department of health review. Furthermore, two new resources for commissioners were launched and 3 action plans were developed for the campaign subgroup and Time for Action.
For more information click here
Posted: 1st November 2011
New resources for commissioners
Two new practical guides are now available for commissioners.
- “Services for children and young people with learning disabilities who display challenging behavior- Well matched skilled staff,” which has been produced by Sarah Bernard and
- “Services for adults with learning disabilities who display challenging behaviour- Well matched skilled staff,” which has been produced by Dr Peter Baker.
Both resources were produced in collaboration with the Challenging Behaviour - National Strategy Group.
Dr Bernard explains “Service provision must be directed by the needs of the individual and there should not be an expectation that these children and young people can be fitted into existing services if such services do not address the complexities of their needs. The distress and trauma which can be experienced if someone is placed in an inappropriate and poorly monitored setting is all too evident with the recent exposure of abuse and poor practice. Such situations can and must be prevented. With this in mind, those commissioning often expensive placements must be able to access evidence based information which can demonstrate what a good service should offer.”
This new resources are available to view online by clicking on the links above. A limited number of hard copies are available on request.
Posted: 1st November 2011
The right line for social care
Four members of the Challenging Behaviour – National Strategy Group (CB-NSG) joined a recent Guardian roundtable event “The right line for social care” in association with the Voluntary Organisations Disability Group. Theresa Joyce (Consultant Clinical Psychologist), Vivien Cooper (Challenging Behaviour Foundation), Dave Williams (Clinical Nurse Specialist) and Bill Mumford (Voluntary Organisations Disability Group) contributed to the roundtable debate. Discussion included:
- A different response to crisis intervention “Why can’t services support people to stay in their own homes rather than say “you are off to a unit, let’s start again”
- The Department of Health Review focussing on prevention so that personal crises were kept to a minimum
- When best practice is implemented there are outstanding results “We know it can work incredibly well for individuals at lower cost with better outcomes, but it’s about how we get there – there isn’t a single answer”
To read the article in full click here
Posted: 11th August 2011
Response from the Prime Minister
The Prime Minister, David Cameron, has stated that he was “appalled at the horrific catalogue of abuses uncovered at Winterbourne View” in the recent Panorama Programme.
Replying to the 86 organisations that wrote to him with a proposed plan of action in response to the issues raised by that abuse, the Prime Minister gave assurances that action is underway to ensure that lessons are learnt. He stated that “A joint plan of action is needed both locally and nationally to drive improvements in services and determine how the lessons from Winterbourne View can influence future policy and practice”. He concluded by stating that the Government is “committed to taking all necessary action to minimise the chance of such terrible event recurring”
In inviting the signatories to discuss their ideas further with the Department of Health, Mr. Cameron also undertook to ensure that the views of the National Forum of People with learning Disabilities and the National Valuing Families Forum inform the reviews currently being undertaken by the Department of Health.
Commenting on the Prime Minister’s reply, Rob Greig, Chief Executive at the National Development Team for Inclusion said “It is extremely encouraging to read that the Prime Minister recognises the need for a coordinated national and local plan of action. The issues highlighted through the Panorama programme will not be resolved just by relying upon the goodwill of local people to do things better”
Alison Giraud Saunders, Co-Director at the Foundation for People with Learning Disabilities said: "The results of the Care Quality Commission review of Castlebeck's other services reinforce the need for a step change in the quality of services commissioned for people like those who were placed at Winterbourne View. We will continue to press for action."
To read more click here
Posted: 18th August 2011
Response from Paul Burstow
Paul Burstow, Minister of State for Social Care has responded to the letter sent by the Challenging Behaviour – National Strategy Group by setting out the Department of Health’s response following the Panorama programme. He says “The Department of Health review will be led by Bruce Calderwood, its Director of Mental Health and Learning Disability. The review will be advised by a panel of experts in the field of learning disabilities, including Professor Jim Mansell, emeritus professor of learning disability at the Tizard Centre, Mark Goldring, Chief Executive of Mencap, and Anne Williams, retired National Director for Learning Disabilities. The review’s activities will be informed by the views of the service user and carer representatives, including the National Forum for People with Learning Difficulties, The Challenging Behaviour Foundation and the National Valuing Families Forum and I will ensure recommendations contained within your report are brought to their attention.”
To read the response in full click here
Posted: 9th August 2011
Time for Action
The Challenging Behaviour - National Strategy Group (CB-NSG) has released a statement “Time for action: stopping the abuse of people with learning disabilities” calling for a number of specific actions to be taken in response to the Panorama investigation. Actions include
- Stop sending people to live in hospitals for people with learning disabilities
- Make sure managers are trained. They should have to do Positive Behaviour Support training. This will help them understand why people show challenging behaviour
- Train inspectors so that they know what to look for in learning disability services
To read the full report click here
Posted: 13th July 2011
A national response to the abuse of people with learning disabilities
Eighty six leading individuals and organisations in the learning disability field, from across the UK have written to the Prime Minister calling for a programme of action in response to the abuse of people with learning disabilities, in a private hospital in Bristol, that was identified by Panorama.
Click here to view the letter 'A national response to the abuse of people with learning disabilities'
Click here to view an easy read version of the letter
Posted: 21 June 2011
Panorama investigation - Statement from the CB-NSG
The Challenging Behaviour - National Strategy Group (CB-NSG) has released a statement in response to the Panorama investigation. This information has been sent to the Department of Health as part of a ministerial briefing for the National Learning Disability Programme Board. It will also be sent to other key individuals and organisations.
Click here to view the CB-NSG statement
Click here to view the covering letter to accompany the statement
Posted: Monday 13th June
Challenging behaviour: a guide for family carers on getting the right support
Three new ‘At a glance’ guides aimed at family carers supporting people whose behaviour is described as challenging are now available. The guides have been developed in collaboration with the Social Care Institute for Excellence (SCIE). There are separate guides for adults, teenagers and children.
The guides help family carers to:
Understand what good support and services look like
Work in partnership with staff who are involved with the family
Find information on what to do and who to contact if the family’s needs are not being met
David Walden, Director of Adult Services at SCIE, says “These guides look in detail at challenging behaviour and are aimed at family carers. Challenging behaviour can put families under great pressure. So, services should support parents and other family carers in their caring role. Also, problems are often caused as much by the way a young person is supportted – or not supported – as by their disabilities. People often behave in a “challenging” way if they have problems understanding what’s happening around them or communicating what they want or need.”
To download the guides click here, or visit: www.scie.org.uk/publications
Posted: 21st March 2011
Better Commissioning – Scoping exercise
The revised Mansell report identified a number of continuing problems faced by people with learning disabilities whose behaviour presents a challenge including breakdown of community placements, increased use of out-of-area placements and the persistence of poor quality institutional solutions.
Valuing People Now identifies the need to include everyone particularly people with complex needs. As part of the Valuing People Now delivery plan “Developing Better Commissioning for individuals with behaviour that challenging services – a scoping exercise” has been published by the Tizard Centre, University of Kent and The Challenging Behaviour Foundation.
The research identifies key findings from interviews conducted with commissioners and family carers and makes a number of recommendations including:
- The development of a programme of nationally coordinated work to support a number of local commissioners (in every region) to implement existing guidance. This programme should include attention both to the development/redevelopment of personalised supports and the more systemic commissioning of provision which has the capacity to prevent and intervene earlier with challenging behaviour and mental health problems.
- The Challenging Behaviour – National Strategy Group (CB-NSG) should continue to co-ordinate and drive the process of improving the quality of outcomes for individuals whose behaviour challenges and their families.
- The Office of the National Director should encourage the use of existing mechanisms (such as the Big Health Check and Partnership Board annual reports) to monitor and hold to account commissioners for their performance on developing better, more local provision.
- The Department of Health should review the application of continuing care criteria in order to clarify the reasons for the wide variation in numbers between areas with a view to reducing perverse incentives.
To download the full report click here. To download a summary version click here.
Posted: 23rd November 2010
Keep in contact with the CB-NSG
You can now become an associate member of the CB-NSG by e-mailing your request to become an associate to: nationalstrategygroup@thecbf.org.uk or Tel: 01634 838739. You will be added to a mailing list to receive information from the CB-NSG by e-mail on a regular basis. Associate members can input to the work of the group via telephone, post, e-mail and the CBF website. Associate membership is free of charge.
To view the charter click here
If you would like to sign up click here to download a sign up form