Strengthen Health Bill for Patients say Charities in Letter to The Times

9/01/2012

More than 40 national health and social care charities – all members of the National Voices coalition - have written to The Times calling on the government to make the Health Bill work better for patients and other service users.

The charities say that the Bill is weak on patient involvement in their care. However this can and should be remedied easily.

While the Bill sets out to create an NHS where there is ‘no decision about us, without us’, as it stands, it contains no direct reference to the most effective forms of shared decision making with patients.

These are: shared decisions about the most appropriate treatments, based on patient preferences and values as well as clinical knowledge; personalised care planning, where professionals help us organise care packages over time, including towards the end of life; and support for people to manage chronic conditions in order to maximise quality of life.

Promoting these three aspects of shared decisions is proven to create better health outcomes, with more appropriate treatment, a better experience of care, and better use of healthcare resources.

Don Redding, Policy Director of the National Voices Coalition says: “The government accepts this evidence but has so far refused to refer specifically to these aspects of care in the Bill. At National Voices, we strongly believe that without such legal clarity, the new care commissioners will not understand their duty of ‘patient involvement’ and how to put it into practice.”

The letter is signed by national charities large and small. See below

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Signed by the following:

Samia al Qadhi, Chief Executive, Breast Cancer Care

Lesley-Anne Alexander, Chief Executive, RNIB

Malcolm Alexander, Chair, National Association of Links Members

Jenny Baker, Chief Executive, Brain Tumour UK

Peter Baker, Chief Executive, Men’s Health Forum

Jon Barrick, Chief Executive, Stroke Association

Judy Birch, Volunteer Chief Executive, Pelvic Pain Support Network

Ailsa Bosworth, Chief Executive, National Rheumatoid Arthritis Society

Neil Churchill, Chief Executive, Asthma UK

Debbie Cook, Director, National Ankylosing Spondylitis Society

Fiona Copeland, Chair, Primary Ciliary Dyskinesia Family Support Group

Suzanne Dobson, Chief Executive, Tourettes Action

Graham Faulkner, Chief Executive, Epilepsy Society

Mark Flannagan, Chief Executive, Beating Bowel Cancer

Karen Friett, Chief Executive, Lymphoedema Support Network

Simon Gillespie, Chief Executive, MS Society

Mark Goldring, Chief Executive, Mencap

Lew Gray, Secretary, Transverse Myelitis Society

Gill Hadfield, Trustee, National Association of Deafened People

Malika Hamiddou, General Manager, CITAS

Joanna Hamilton-Colclough, Director, Migraine Action

Tanya Harrison, Chairperson, BRAME (Blue Ribbon for the Awareness of Myalgic Encephalomyelitis)

Jenny Hirst, Co-Chair, Insulin Dependent Diabetes Trust

Jeremy Hughes, Chief Executive, Alzheimer’s Society

Chris James, Chief Executive, Haemophilia Society

Steve James, Group Chief Executive, Avenues

Robert Johnstone, Chair, Access Matters

Phil Lee, Chief Executive, Epilepsy Action

Peter Lyne, National Vice-President, Disabled Motorists’ Federation

Chris Maker, Director, Lupus UK

Emma Malcolm, Chief Executive, Prostate Action

Farah Nazeer, Director of External Affairs, Motor Neurone Disease Association

David Orme, Co-Chair, Dudley LINk

Susie Parsons, Interim CEO, Arthritis Care

James Partridge, Chief Executive, Changing Faces

Hazel Pixley, National Secretary, Urostomy Association

Geoff Salmon, Director of Fundraising, National Tremor Foundation

Pat Schooling, Executive Director, Action Against Allergy

Owen Sharp, Chief Executive, Prostate Cancer Charity

Paul Springer, Director of Resources, Age Related Diseases and Health Trust

Jeremy Taylor, Chief Executive, National Voices

Chris Whitwell, Director, Friends, Families and Travellers

Arlene Wilkie, Chief executive, Neurological Alliance

Barbara Young, Chief Executive, Diabetes UK

Ends

Notes to editors:

For media enquiries please contact: Jules Acton on 020 3176 0737 / 0773 jules.acton@nationalvoices.org.uk

National Voices believes in people shaping health and social care. It is a coalition of more than 130 health and social care charities and speaks on behalf of its members and of the millions of patients, carers and social services users that they represent. It works to ensure that patient voices are heard and that they influence decisions at national level.