Health and Social Care Bill

Memorandum submitted by Mencap (HSR 06)

Monday 27th June 2011

About Mencap

Mencap supports the 1.5 million people with a learning disability in the UK and their families and carers. ( More on learning disability can be found in appendix A ).

Mencap fights to change laws and improve services and access to education, employment and leisure facilities, supporting thousands of people with a learning disability to live their lives the way they want. Mencap has a long standing interest in health . (M ore can be found in Appendix B ).

Mencap is also one of the largest providers of services, information and advice for people with a learning disability across England , Northern Ireland and Wales . ( See for more information).

Health and Social Care Bill 2011 and the NHS Future Forum

During the NHS listening exercise, Mencap helped to co-ordinate a 40 strong charity coalition calling for the voice of all patients, including those with a learning disability, to be put at the heart of the proposed changes to the NHS.

The joint statement (See Appendix C) issued by these charities secured national media coverage, but more importantly, partly contributed to many of the key requests met in whole or in part through the Government’s response to the report published by the NHS Future Forum. Mencap is pleased to see the positive moves made by the Government on this issue.

Two key points Mencap would like to see considered by members of the Bill Committee

As sections of the Bill return to the Committee, Mencap has focussed on two key points that were not conclusively addressed by the Government in its response.

1) Within the government’s response to the NHS Listening Exercise the following statement was made around the commissioning of learning disability services:

"(Within the NHS commissioning board) clear arrangements will be needed for key services or areas that may require dedicated professional and clinical leadership. This may include…services for people with learning disabilities’

Mencap would appreciate any clarity that could be brought to the role the NHS Commissioning Board will play with regards to learning disability – as it is vitally important to get right the commissioning of services for those with some of the most complex needs.

Mencap endorses the proposal for services for those with Profound and Multiple Learning Disabilities (PMLD) being commissioned by the Clinical Commissioning Groups with oversight provided by the NHS Commissioning Board.

In March 2010, Professor Jim Mansell was commissioned by the Department of Health to write the Raising Our Sights report (March 2010) which highlighted how effective local services can be when provided in community and local settings for people with PMLD. This is a model which is endorsed by Mencap.

2) The second issue concerns the importance of ensuring that local Healthwatch is subject to the Freedom of Information (FOI) Act. In response to a parliamentary question (Hansard, 8 June 2011, column 355W – 58066), Mr Simon Burns suggested that the government were considering adding local Healthwatch to the schedule of organisations covered by the Freedom of Information Act. Mencap would welcome any clarity Members of the Bill Committee could secure from Ministers as to whether it is the government’s intention to add local Healthwatch to the FOI Act.

Appendix A – about learning disability

A learning disability is caused by the way the brain develops before, during or shortly after birth. It is always lifelong and affects someone's intellectual and social development. It used to be called mental handicap but this term is outdated and offensive. Learning disability is NOT a mental illness. The term learning difficulty is often incorrectly used interchangeably with learning disability.

Appendix B – about Mencap’s interest in health

· Mencap have a long standing interest in the health of people with a learning disability and was awarded the Civil Society overall charity of the year award in June 2011 for its campaigning work in this area. [1]

· Research has shown that people with a learning disability still experience worse health outcomes and health inequalities than the general population.

· Mencap’s Death By Indifference report (2007) highlighted the 6 premature, avoidable deaths of people with a learning disability in the NHS.

· These shocking deaths led to a government ordered independent inquiry (Sir Jonathan Michael/Healthcare for all) as well as an investigation by the Health Service Ombudsman (6 Lives report).

· Since these reports, progress has been made within the NHS, but performance is inconsistent.

· A recent progress update to the Ombudsman (the 6 Lives Progress Report, DH, 2010) showed that concerns remain around poor use of mental capacity legislation and lack of health services being reasonably adjusted.

· With the changes proposed in the Health & Social Care Bill, the challenge is to ensure that progress in driving better health outcomes for all people with a learning disability is not lost.

· Mencap leads the Getting it Right campaign, which is a coalition of charities and Royal Colleges working together to realise better health outcomes for all disabled people (including those with learning disability), collaborating on this Bill.

Appendix C – Joint statement on health reforms issued by 40 charities, 27th May 2011

"Listen up" – charity statement

This is a time of great uncertainty in the NHS. This uncertainty does not help anyone. The Government’s "Listening Exercise" is therefore to be welcomed. The Department of Health needs to use this time to substantially improve the Health and Social Care Bill.

Although the upheaval in NHS is a considerable challenge to all of those involved in health and social care, it is also an opportunity to address long standing inequalities. Currently, the Health & Social Care Bill does not live up to the aspirations set out in the Government’s White Paper.

In order to put patients at the heart of the NHS, improve health outcomes for all and empower clinicians, we believe the Government must:

1) Ensure GP Consortia effectively engage with all patients and put them at the heart of their plans.

2) Improve integration across health and social care by strengthening the role of health and wellbeing boards and the NHS Commissioning Board

3) Create a Healthwatch that is independent, well-resourced, transparent and able to act as an advocate for all patients.

4) Include measurements for outcomes of the most vulnerable.

5) Ensure children’s services are embedded in health and social care.

6) Improve access to specialised services for those with complex needs

The 40 charities & coalitions who signed this joint statement were: Action Against Allergy, Alzheimer's Society, The Anaphylaxis Campaign, Arthritis Care, The British Liver Trust, British Red Cross, The College of Optometrists, Crohn's and Colitis UK, Every Disabled Child Matters, Friends, Families and Travellers, Guide Dogs, The Lindsay Leg Club Foundation, Learning Disability Coalition, Lupus UK, Macular Disease Society, Mencap, The Meningitis Trust, The Mental Health Foundation, Migraine Action, The Migraine Trust, Mind, Muscular Dystrophy Campaign, The National Autistic Society, National Forum of People with Learning Disabilities, National Rheumatoid Arthritis Society, Organisation for the Understanding of Cluster Headache, Ostomy Lifestyle, The Patients Association, Parkinson's UK, Pelvic Pain Support Network, Primary Immunodeficiency Association, RNIB, RNID, Royal College of General Practitioners (Learning Disability group), Scope SeeAbilit, Specialised Healthcare Alliance, Thyroid UK, United Response & WellChild.

June 2011


Prepared 30th June 2011