“Six Lives: Progress Report on Healthcare for People with Learning Disabilities”

Health written statement – made on 12th July 2013.

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Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

I have today published the Department of Health’s second progress report in response to the recommendations of the parliamentary and health service ombudsman and the local government ombudsman in their March 2009 report “Six lives: the provision of public services to people with learning disabilities”. At the same time, I am also publishing the Government’s response to the recent “Confidential Inquiry into the premature deaths of people with learning disabilities”.

“Six Lives: Progress report on healthcare for people with learning disabilities” provides an assessment of the progress made since the previous progress report published on 14 October 2010 in health and social care services to fulfil the ombudsmen’s recommendations and improve health care and treatment for people with learning disabilities.

The report demonstrates that more people with learning disabilities than ever before have taken up the opportunity of an annual health check which will help improve their health and enable preventive interventions to stop potential health crises. The report also sets out priority areas for further progress including:

giving greater voice and power to people with learning disabilities and their local communities to develop services for everyone, including those in vulnerable or marginalised groups; supporting the spread of personal health budgets for people with learning disability with greater integration across health and social care; ensuring that health and well-being boards have information to support them in understanding the complex needs of people with behaviour that challenges; and working with NHS England to make sure that the system continues to monitor and improve the health and care outcomes of people with learning disabilities.

The Department of Health worked with Mencap and the British Institute of Learning Disabilities (BILD) to engage with and listen to people with learning disabilities and family carers about their views and experiences of health care to find out more about where progress had been made and where more work needs to happen. Alongside the second progress report, we are publishing a summary of the outputs from that engagement event, including the results of a questionnaire about whether health care is getting better for people with a learning disability.

“Government response to the Confidential Inquiry into the premature deaths of people with learning disabilities” addresses all the inquiry’s recommendations, taking account of the changes to the health and care system which have been set in train since the Confidential Inquiry was established. The Department of Health, NHS England and other delivery partners will have an important role to play in leading change to improve access, experience and outcomes for people with learning disabilities and family carers. Specific changes include:

using the Government’s information strategy for health and care to drive improvements in the way in which we identify people with learning disabilities so that we can better respond to their needs; linking data about cause of death with other data such as the GP practice learning disability registers to better understand and respond to premature mortality among people with learning disabilities; using local mortality data on people with learning disabilities to inform Joint Strategic Needs Assessment and Joint Health and Wellbeing Strategies; using the NHS Standard Contracts to better take account of and respond to people’s needs; aiming to have a known contact for people with multiple long-term conditions to co-ordinate their care, communicate with different professionals and be involved in care planning with the individual; looking at introducing patient-held records for all people with learning disabilities who have several health conditions; looking at the Mental Capacity Act guidance, advice and training for professionals, that is available to inform decisions about people's care; and assessing with NHS England, Public Health England and other partners the costs and benefits of establishing a National Learning Disability Mortality Review Body.

For both the Six Lives progress report and the response to the confidential inquiry, we want to see a fundamental culture change so that people with learning disabilities, autism and those people with complex needs and behaviour that challenges and their family carers have the same rights as anyone else to accessing the best possible quality care and support. We expect this in turn to lead to better outcomes and fewer premature and avoidable deaths.

The Government are determined to work across the system to improve standards of care. Following events at Winterbourne View and Mid Staffordshire hospitals, we have conducted thorough investigations and delivered strong responses to enable the system change and shift in attitudes needed to support people with learning disabilities and their families.

I want to put a stop to bad practice. Good practice must be our everyday expectation and services must strive for excellence. Everyone involved in the provision of services needs greater awareness of the personal impact they can make on the health and quality of life of people with learning disabilities so that poor practice and unacceptable health inequalities can be tackled head on.

Both the report and the response have been placed in the Library. Copies are available to hon. Members from the Vote Office and to noble Lords from the Printed Paper Office. The documents are also available at: