Latest News

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

Become a Friend of CBF

We have just launched our new Friends of CBF scheme. Friends of CBF are friends, families and professionals who form a community of people who understand that we need to help everyone to understand more about people with severe learning disabilities and behaviour that challenges.

Friends of CBF are people who like what we do and want to support us and know more about our work. Click here to find out more about becoming a Friend of CBF.

CQC Acting Together

The Challenging Behaviour Foundation is delighted to announce that we will partner the Care Quality Commission (CQC) to support family carers of people with complex needs to act as Experts by Experience.

Acting Together includes involving people as Experts by Experience on inspections of health and social care services and in visits to monitor the use of the Mental Health Act.

Vivien Cooper, Chair of Trustees of the Challenging Behaviour Foundation said: “Family carers of individuals with learning disabilities and high support needs have a wealth of experience in understanding the needs of their relatives and recognising good support and services. I am delighted that the Challenging Behaviour Foundation will be working with the CQC, supporting family carers of people with complex needs to influence and improve support and service provision.”

For more information see the CQC press release

Winter speaking events

CBF will be attending and speaking at a number of events this winter, just click on the event to find out more.

Pavillion Challenging Behaviour Roadshows

Roadshow on challenging behaviour – from £125 to attend – London 24th January 2012, Belfast 2nd February, Bristol 9th February

People with learning difficulties whose behaviour is described as challenging are among the most vulnerable to poor services, poor intervention, and abuse.

Yet over the last two decades we have seen a wealth of policy, research evidence and good practice guidance as to what works and how services should be developed and delivered.
The roadshow brings together the main stakeholders in services for adults with learning disabilities who exhibit challenging behaviour, to share best practice on creating positive outcomes, including:

Steve Hardy, Training and Consultancy Manager, The Estia Centre
Family carers, The Challenging Behaviour Foundation
Beverley Dawkins, National Officer for Profound and Multiple Learning Disabilities, Mencap
Bill Mumford, Chairman, Voluntary Organisations Disability Group

Reasons to attend:

Establish a solid footing for your organisation in the current policy landscape
Learn how to develop and maintain an effective staff support framework
Explore good practice in working with service commissioners
Contribute to multi-stakeholder discussions around key issues and concerns
Take away practical tools and learning to enhance your organisation’s efficiency

Read the full CPD certified programme: http://www.pavpub.com/pdf.aspx?path=/events/414.pdf

Capita’s 4th National Learning Disabilities Conference 27th January 2012

Free/subsidised training

We were delighted to learn that the CBF has been awarded funding by the Department for Education under their grant programme ‘Improving outcomes for children, young people and families’. The grant funding is specifically to deliver practical training workshops for staff and families caring for children and young people with severe learning disabilities using the schools-based training model recently piloted at five special needs schools in Kent.

For more information click here

Challenging Behaviour Workshops

The Challenging Behaviour Foundation now offers training workshops for family carers and professionals in:

Understanding Challenging Behaviour
Supporting Behaviour Change
Communication & Challenging Behaviour

The Challenging Behaviour Foundation has extensively piloted and refined the training to ensure it is practical, promotes partnership working between family carers and professionals and is of the highest quality. At a recent workshop100% rated our training as “Excellent” and would recommend the training to others

“Brilliant workshop – I have learnt so much”

“Theory and practical balance was excellent”

“Being with other parents who share the same experiences is fantastic to reduce feelings of isolation”

“Excellent – particularly listening to parents’ points of view – it is easy to forget about a child’s home life”

“What’s had the greatest impact is working as a team. We all know that we are all doing the same thing and consistency has had a huge impact.”

For more information click here

Improving personalisation

A new CBF project is underway in the East Midlands. The project aims to improve personalisation for people with learning disabilities whose behaviour is described as challenging so they can access personalised services like supported living, community involvement and creative employment opportunities.

Jayne Linguard (Project Manager) is working with a number of local authorities and NHS bodies in the East Midlands. Together they are identifying 20 people for whom they have difficulties in offering personalisation. Their local planning teams will be supported by the CBF with additional housing and behavioural support. The project is also supporting six families to advocate on behalf of their relative to their service commissioners. The families contacted the CBF because they were not getting a suitable response.

For more information on the personalisation project click here

Everybody matters: A new film project

A powerful new film project is being planned which, following Winterbourne View, it will provide an urgent call for the support and services that are needed to enable individuals and their families to lead good lives. A short 10 minute film is available to view now.

Professor Jim Mansell who features in the film says “There’s no doubt that we need to take action to stop these kinds of services being used in this way as dumping grounds as an alternative to developing proper local support.”

Everybody Matters will be developed into a longer film to raise awareness of the impact of challenging behaviour on individuals with learning disabilities and their family carers. The aim is to demonstrate that good lives for people with challenging reputations and complex histories are possible and are happening.

To make this film happen we need your support.

To view Everybody Matters and find out more about supporting the project click here

Time for action: Panorama Update

As a result of the Panorama programme and subsequent closure of Winterbourne View the Care Quality Commission highlighted serious concerns about two further Castlebeck services which have subsequently closed.

The Government has announced a review to be led by Bruce Calderwood (Department of Health) with input from Mark Goldring (MENCAP), Prof Jim Mansell (Tizard Centre, University of Kent) and Anne Williams (Former National Director for Learning Disabilities)The review team will also be talking to people with learning disabilities, people with autism, families and a range of other stakeholders. The review team will make recommendations in a report due to be published in April 2012.

Regular updates on the action taken as a result of the Panorama programme are available in a new section on our website located within the National Strategy Group pages.

CBF on Facebook

The new CBF Facebook page is great way to get in touch with other people who may be going through similar experiences, or feel the same about current issues in the world of learning disability and challenging behaviour. The CBF Facebook page provides a network for sharing information, mutual support, news and information. We post details of all our events and the conferences we attend, so everyone knows where CBF staff and volunteers will be. When there are important policy decisions or news relevant to severe learning disabilities, we comment and invite discussion.

Around 300 family carers and professionals now ‘like’ our page and many people regularly read and comment on posts.

To view or comment on the CBFs Facebook page please visit www.facebook.com/thecbf

Out of sight, out of Mind?

The Winter 2011 edition of "Challenge”, focuses on what is happening as a result of the Panorama programme in which an undercover reporter filmed the abuse of people with learning disabilties at Winterbourne View, a private hospital. There is also a focus in this issue on how we support individuals with mental health problems and how the Mental Health Act should be used to protect people but can sometimes be used in ways which are unhelpful. Two family carers give their experience of their relative being sectioned under the Mental Health Act.

Click here to download the Winter 2011 edition of Challenge in PDF format.

New Resources

Ten Top Tips

In the current economic climate the Challenging Behaviour Foundation is increasingly hearing from family carers who have had vital service and support cut, or have been told cuts are planned in the near future.

If you are in this position or your relative is receiving poor quality support you may find the new Challenging Behaviour Foundation information sheet "Ten top tips: for family carers on ensuring good support and services for adults with severe learning disabilities whose behaviour is described as challenging" helpful.

Written by Professor Luke Clements, an expert in Community Care Law, this information sheet provides basic legal knowledge including how to get an assessment of needs; getting a care plan and allocation panels.

It has been written for family carers whose relative is aged 18 years or above and have severe learning disabilities and behaviour described as challenging. Each top tip is accompanied by several action points which family carers can take to ensure their relative receives good support and services.

Click here to download a copy of Ten Top Tips

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 supported – 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

Updated Resource

The Challenging Behaviour Foundation has updated the information sheet ‘The use of medication in the Treatment of challenging behavior’, written by leading expert Professor Tony Holland. The information sheet aims to empower family carers through providing clear information on the use of medication and its role in the management of challenging behaviour.

Challenging behaviour may happen for many reasons and it is important to find out why it is happening. There is a long history of excessive and inappropriate use of tranquillising medication for “treating” challenging behaviour. Medication should only be prescribed following a proper assessment and where a clear reason for using medication has been identified. The resource covers key questions carers should consider when medication is being prescribed to their relative.

Click here to view “The use of medication in the Treatment of challenging behavior” or contact info@thecbf.org.uk to order a hard copy (charge of £1.00 for professionals; free of charge to family carers).

Booklist for professionals

The Challenging Behaviour foundation has updated the information sheet a ‘Booklist for professionals’.

The booklist identifies key books and articles that would be useful to professionals who support individuals with learning disabilities whose behaviour is described as challenging. The list gives details of the books and articles including title, author, ISBN and price.

This new resource is available to view online. Click here to view “Booklist for Professionals” or contact info@thecbf.org.uk to order a hard copy (charge of £1.00 for professionals;free of charge to family carers).

New resources for commissioners

Text: Two new practical guides are now available for commissioners.

“Services for children and young people with learning disabilities who display challenging behaviour- 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.

The resources identify;

Which professionals should be involved in meeting the needs of individuals who display challenging behaviour
What to look for from a service
What skills the workforce require
How to monitor the service provision

These new resources are available to view online by clicking on the links above. A limited number of hard copies are available on request.