Dan Scorer, Campaigns Manager at learning disability charity Mencap, comments:
We are hugely disappointed at the Government’s weak response to the recommendations outlined in the Confidential Inquiry. While there are some positive activities outlined, the Government does not address key recommendations of the Inquiry.
Independent research shows that over 1,200 children and adults with a learning disability continue to die unnecessarily every year in England because of discrimination in the NHS*. This is the equivalent of a scandal on the scale of Mid-Staffordshire every year for people with a learning disability. The lack of decisive leadership by the Government shows a continued failure to place equal value on the lives of people with a learning disability.
A delayed commitment by the Government to set up a national body to monitor and investigate the deaths of people with a learning disability is a lost opportunity to learn from mistakes and stop this tragic waste of life. Furthermore, it is utterly disrespectful to the families of those who have lost their lives due to poor NHS care.
Since the launch of Mencap’s Death by Indifference report in 2007, which exposed how unequal healthcare and institutional discrimination had led to the deaths of six people with a learning disability, there has been little progress. Patients with a learning disability experience delays in diagnosis, delays in treatment, lack of basic care and poor communication by health professionals. This is simply unacceptable.
The Confidential Inquiry showed that over a third (37%) of deaths of people with a learning disability was due to them not getting the right health care. How many more deaths at the hands of the NHS do there need to be before the Government takes this issue seriously?
For more information or to arrange an interview with a Mencap spokesperson or case study, contact the Mencap Press Office, on 020 7696 5414 or firstname.lastname@example.org.
Notes to editors
* Source: Gyles Glover, Eric Emerson, (2013) "Estimating how many deaths of people with learning disabilities in England could be prevented by better medical care", Tizard Learning Disability Review, Vol. 18 Iss: 3, pp.146 – 149.
Following the publication of Mencap’s Death by Indifference report in 2007, the government asked the Parliamentary and Health Service Ombudsman to investigate the deaths of the six people with a learning disability described in the report.
In March 2009, the Health Ombudsman published its Six Lives report, which was a damning indictment of the appalling neglect of the six people with a learning disability who died in NHS care. In 2010, the Department of Health published its findings on the progress on recommendations made by the Ombudsman and commissioned a new inquiry - the Confidential Inquiry into premature deaths of people with a learning disability.
Upcoming parliamentary events
Mencap is involved in two parliamentary events next week around these two reports:
15 July 2013: All Party Parliamentary Group (APPG)
Care Services Minister Norman Lamb and Christine Papalabropoulos, mother of Tina who died on 30 January 2009, will be speaking.
18 July 2013: Debate in the House of Lords
Baroness Sheila Hollins will be leading a debate in the Lords on the subject of the Confidential Inquiry and the Government's response, which a number of families involved in Mencap’s Death by Indifference campaign will be attending.
There are 1.5 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want.
For advice and information about learning disability and Mencap services in your area, contact the Learning Disability Helpline on 0808 808 1111 (9am-5pm, Monday-Friday) or email email@example.com.