National learning disability charity Mencap is calling on the Government to make the NHS safe for people with a learning disability following the publication of a new report Death byindifference: 74 deaths and counting, which finds continued institutional discrimination in the NHS. 

The new report looks at what progress has been made since the publication of Mencap’s original Death by indifference report in 2007.

The charity’s latest report confirms that, although some positive steps have been taken in the NHS, many health professionals are still failing to provide adequate care to people with a learning disability. The report highlights the deaths of 74 people with a learning disability in NHS care over the last ten years, which Mencap believes could have been avoided and are a direct result of institutional discrimination.

The report uncovers common errors made by healthcare professionals. These include failure to abide by disability discrimination law, ignoring crucial advice from families, failing to meet even basic care needs and not recognising pain and distress and delays in diagnosing and treating serious illness.Mencap believes that this is underpinned by an assumption by some healthcare professionals that people with a learning disability are not worth treating.

The report also showsthere has been no systematic monitoring by the Department of Health to ensure that the health needs of people with a learning disability are being met. In particular, the Department of Health is failing to meet many of the ten key recommendation set out in the Government inquiry led by Sir Jonathan Michaels, Healthcare for All.

Mencap believes that in order for people with a learning disability to stop dying needlessly in the NHS it is essential that the Healthcare for All recommendations,are fully implemented.

Mark Goldring, Mencap chief executive, said:

The report confirms that five years on from our landmark Death by indifference report many parts of the NHS still do not understand how to treat people with a learning disability. At Mencap we continue to hear heartbreaking stories of unnecessary deaths and pain. Sadly we believe that these cases are just the tip of the iceberg.”

Although some significant steps have been taken within the NHS, where progress has been made it has been patchy and inconsistent. If the Government doesn’t get to grips with this serious issue more people will die unnecessarily.As the NHS faces many new challenges, and undergoes many new changes, it is even more vital that the welfare of people with a learning disability is not forgotten.

To end discrimination in the NHS and ensure people with a learning disability receive the same quality of care as the rest of the population Mencap is calling for:

  • annual health checks to become a permanent part of the GP contract to ensure early detection of health conditions
  • all health professionals to act within the law and get training around their obligations under the Equality Act and Mental Capacity Act so that they can put this into practice when treating patients with a learning disability
  • regulatory bodies such as the CQC, GMC and Nursing Midwifery Council to conduct rigorous investigations and deliver appropriate sanctions where health professionals clearly failed in their obligations to patients with a learning disability
  • the NHS complaints process to be overhauled. It is not fit for purpose. It is time consuming and defensive and does not enable the NHS to learn important lessons quickly enough to prevent further deaths
  • acute Liaison Nurses to be employed by every acute service, linked to senior leadership, who have a strategic role in supporting ward staff to make reasonable adjustments
  • A standard hospital passport is made available to all people with a learning disability.

The charity has a charter that health trusts can sign up to called Getting it right,aimed at stopping indifference and making rights a reality for patients with a learning disability.

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Contact Mencap media team on: media@mencap.org.uk

Notes to editors

Mencap’s Death by indifference report: www.mencap.org.uk/deathbyindifference

The report contained evidence that people with a learning disability were dying unnecessarily due to institutional discrimination in the NHS.

Death by indifference contained six cases where people with a learning disability had died unnecessarily due to widespread ignorance and neglect within the NHS.

As a result of Death by indifference an independent inquiry was carried out by Sir Jonathan Michael, which makes strong recommendations for change to give people with a learning disability equal healthcare.

The Health Ombudsman also reported on the six cases via her Six Lives report. In 2009 the Department of Health published its three year strategy for learning disability services in England.

Getting it right charter

Mencap is asking healthcare professionals to pledge to:

  • make sure that hospital passports are available and used
  • make sure that all of our staff understand and apply the principles of mental capacity laws
  • appoint a learning disability liaison nurse in our hospital/s
  • provide ongoing learning disability awareness training for all staff
  • listen to, respect and involve families and carers
  • provide practical support and information to families and carers
  • provide information that is accessible for people with a learning disability
  • display the Getting it Right principles for everyone to see.

About Mencap

 About learning disability

There are 1.5 million people with a learning disability in the UK. Mencap fights on their behalf, and on behalf of their carers and families, 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.

We are also the largest service provider of services, information and advice for people with a learning disability across England, Northern Ireland and Wales. See www.mencap.org.uk for more information

What is a learning disability?

A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.

People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complex information and interact with other people the level of support someone needs depends on individual factors, including the severity of their learning disability.