Mencap says the deaths of over 70 people with a learning disability in care is a damning indictment of the NHS

Tuesday 03 January 2012

Mencap has worked with the Guardian newspaper to identify 74 deaths of people with a learning disability and 17 serious incidents while in NHS care. 59 of these were in the past five years. Families allege hospital blunders, poorly trained staff and indifference are to blame. Mencap is calling for the NHS complaints system to be overhauled.

These cases confirm that too many parts of the health service still do not understand how to treat people with a learning disability and they are an appalling catalogue of neglect and indignity. A lot of positive steps have been taken in the health service since our Death by indifference was published yet we are still hearing of many patients with a learning disability receiving poor treatment. Sadly, we believe that the cases in this report represent the tip of the iceberg.

 

The article shows that health professionals are still making the same errors that we highlighted in our Death by indifference report.  These include ignoring crucial advice from families, failing to diagnose serious illness, assuming that the quality of life of some individuals is so poor that their lives are not worth saving and failing to recognise pain and distress. In some case this also has meant failing to provide the most basic nursing care such as leaving patients dehydrated and without food. If attitudes and training aren’t overhauled across the board people will continue to die needlessly.

The NHS complaints process should be overhauled to end the scandal that when complaints are pursued with the hospital, it is often impossible to find out what really went wrong.  All too often families are forced to jump through hoops and are left feeling that their concerns have not been taken seriously or thoroughly dealt with. This results in a lack of learning across the NHS when things go wrong. It is simply not right that some families have been forced to wait eight years for an apology or an explanation for the death of their loved one.  

 

These cases show that lessons are still not being learnt in the health service. 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.

• Annual health checks to become a permanent part of the GP contract to ensure early detection of health conditions, not agreed an annual basis as now. 
• 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 GMC, should 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 should be overhauled. It is not fit for purpose. It is time consuming and defensive and does not enable the NHS to learn important lesson quickly enough to prevent further deaths. 
• All hospitals should sign up to Mencap's ‘Getting it right’ charter and put the good practice in to place that we know saves lives. 

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

• 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

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.

• About learning disability