Posted Tuesday 16 July 2013
Better clinical leadership and commitment by policy makers is essential to improve healthcare for people with learning disabilities, say experts from Kingston University and St George's, University of London.
Baroness Sheila Hollins and Dr Irene Tuffrey-Wijne have backed recommendations made in March's Confidential Inquiry into Premature Deaths of People with Learning Disabilities. The inquiry found great discrepancies in the ages of death for people with learning disabilities, and called for an ongoing national learning disability mortality review. It also asked that NHS England take on board recommendations of how to improve the healthcare of people with learning disabilities.
In an editorial in the British Medical Journal, Baroness Hollins and Dr Tuffrey-Wijne supported the inquiry's recommendations, saying people with learning disabilities should be clearly identified within the healthcare system, they should be afforded specialist advocacy, their families should be included as expert care partners, and their care should be adjusted to take account of their particular vulnerabilities.
The inquiry reviewed the deaths of 247 people with learning disabilities over two years, comparing them with the deaths of 58 people without a learning disability. It found that men with learning disabilities died on average 13 years earlier than those without. For women, this was an average of 20 years earlier. Overall, 22 per cent of people with learning disabilities were under the age of 50 when they died, compared with nine per cent of the general population. Premature deaths for people with learning disabilities were mostly due to delays or problems with investigating, diagnosing, and treating illnesses and with receiving appropriate care.
Baroness Hollins, emeritus professor of the psychiatry of disability at St George's, and Dr Tuffrey-Wijne, a senior research fellow at the Faculty of Health, Social Care and Education run jointly by Kingston and St George's, said the results were alarming but not surprising. They said they corresponded with findings and recommendations from previous research and reports published by charities and advisory groups. They referred to one study that concluded patients with learning disabilities were largely invisible within the healthcare system, and healthcare workers were often ignorant about their particular vulnerabilities.
"Unfortunately, it seems that mainstream health professionals seldom raise concern about failures in the treatment of people with learning disabilities," Baroness Hollins said.
In backing the recent inquiry's recommendation for the establishment of a national learning disability mortality review body, the experts cited the establishment of a similar body in the United States that has led to effective improvements in practice.
Dr Tuffrey-Wijne added that specialists who advocate and care for patients with learning disabilities feared the new commissioning arrangements in the NHS in England would leave people with learning disabilities at increased risk of premature death despite the outcomes framework specifically seeking to reduce such deaths. "By bringing together health and social care planning, health and wellbeing boards could create integrated care pathways, improve information sharing, and encourage clinical commissioning groups to improve the care purchased," she said.
Baroness Hollins and Dr Tuffrey-Wijne also highlighted the need for informed advocacy for learning disability patients, to ensure services are designed to meet their needs.
"The recent Francis inquiry called for a culture change in the NHS that would see the needs of patients come first. Patients with learning disabilities - perhaps more than any other patient group - need special focus, knowledge, and skill to ensure that their healthcare needs are met. All of this requires clinical leadership and a strong commitment at policy level," Dr Tuffrey-Wijne concluded.
Baroness Hollins will be opening a debate about the confidential inquiry in the House of Lords on 18 July, to which Earl Howe, minister in the Department of Health, will respond.