People with learning disabilities are still experiencing poor care and face unacceptable inequalities in health and social care and this needs to change, two government reports have said.
The Department of Health has published its responses to the Confidential Inquiry into premature deaths of people with learning disabilities and the Six Lives Progress Report on Healthcare for People with Learning Disabilities. While these show that some improvements have been made in the care of people with learning disabilities inequalities still exist.
In response, the Department of Health has asked the National Clinical Director for Learning Disability to look at the feasibility of developing best practice guidelines for the treatment of people with learning disabilities.
Other recommendations include:
• Improving the way people with learning disabilities are identified so that services can better respond to their needs
• Aiming to have a known contact for people with multiple long-term conditions to coordinate 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.
The DH has also set out progress on improving healthcare in the second Six Lives Progress Report to the Ombudsmen, 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 with greater integration across health and social care
• Ensuring Health and Wellbeing Boards have information to help them understand the complex needs of people with learning disabilities
• Working with NHS England to ensure that the system continues to monitor and improve the health and care results of people with learning disabilities.
Care and Support Minister, Norman Lamb, said: “It is not good enough that people with learning disabilities are at a greater risk of dying earlier due to poor healthcare.
“Good, high quality care should be expected for everyone. We wouldn’t accept this kind of poor care for cancer patients, so there is no reason why it is acceptable for people with learning disabilities.
“We are making progress on improving standards of care, but we have to go further and keep driving forward our plans.”
However, learning disability charity Mencap has reacted with dismay to the government’s response. Dan Scorer, campaigns manager at the charity, said: “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?”