People with Learning Disabilities: Health Inequalities

Lord Wigley Excerpts

Thursday 18th July 2013 Lords Chamber

[Lord Wigley]

My Lords, I declare an interest as patron of Mencap Wales and Autism Cymru. I welcome the opportunity to speak in this most important of debates. As the noble Baroness, Lady Hollins, has set out very clearly, the figures are shocking and should rightly make us very angry indeed. The fact that 37% of deaths investigated by the confidential inquiry could have been prevented with better healthcare should rightly motivate us to do all that we can to tackle the startling health inequalities that people with a learning disability face. I share her concern that the Government have not gone far enough in order to bring about the change we really need to see. It is particularly disappointing in light of the fact that the issue was brought to the attention of the Government before and met with similar inaction.

In 2006, I was a commissioner at the Disability Rights Commission and worked on the formal, 18-month investigation into healthcare given to people with mental health problems and learning disabilities. It was then that I first came across the findings of the work undertaken by the noble Baroness, Lady Hollins, that those under 50 years of age with learning disabilities or mental health issues were 58 times more likely to die from medical conditions not associated with their disability than was the general population of that age group—58 times more likely is a staggering figure.

The DRC’s resulting report, Equal Treatment: Closing the Gap, found that those with learning disabilities or mental health issues regularly get worse treatment than others. The study, carried out in England and Wales, examined several million health records and found that people with learning disabilities and mental health problems were more likely to have a major illness, to develop a serious health condition younger, and to die sooner than the rest of the population. Despite this, the same group of people were less likely to have routine tests and screening to pick up signs of a problem at early stages. For example, people with learning disabilities who have diabetes have fewer measurements of their body mass index, while those who have had a stroke have fewer blood pressure checks. The investigation also identified a problem known as diagnostic overshadowing, whereby symptoms of physical ill health are often seen as part of a patient’s mental health problem or learning disability and are not properly investigated or treated.

One of the aims of the work was to see which areas of the NHS would need to improve in the context of the then recently introduced Disability Discrimination Act, including the duty to make reasonable adjustments for disabled people, something which was in place since 1999. We were clear that GPs needed to make reasonable adjustments in order for people with a learning disability to access healthcare effectively. This included simple things such as making appointments by e-mail, providing treatment information in alternative formats or sending text or phone appointment reminders. Also important in terms of reasonable adjustments was raising awareness and understanding among both GP clinic and hospital staff in terms of learning disability.

This is demonstrated powerfully through the story of Susan. Susan died on 1 February 2011 in St Christopher’s Hospice in Sydenham, having been transferred the previous day from Lewisham Hospital. She was 59 and had cancer. Although Susan had been diagnosed with breast cancer some years previously, she had lived happily with her sister Brenda. Both were actively involved with their local Mencap in Lewisham and Susan often volunteered at events and outings. Susan was admitted to Lewisham Hospital on 15 January 2011 with vomiting and jaundice. Like so many other family members and carers, Brenda visited Susan every day and made herself known to staff as Susan’s main carer. As there was no learning disability specialist nurse available on the ward, Brenda found herself regularly explaining to staff about Susan’s care needs and becoming increasingly frustrated by the general lack of understanding and awareness about learning disability, which seemed to permeate the hospital. At one low point, Brenda was told by the matron that her staff, “don’t encounter people with learning disabilities in hospital that often”. Consequently, no adjustments were made to accommodate Susan’s needs, leaving Brenda fearful and anxious for Susan’s treatment unless she was there on an almost round-the-clock basis. Despite a complaint to the hospital by Brenda about a potential breach of the Equality Act for a failure to make reasonable adjustments to accommodate Susan’s learning disability, progress was slow, and a year after Susan’s death, the hospital had still failed to demonstrated that staff had any more awareness about learning disability and their duty of care and duty to provide equal access to healthcare to patients with a learning disability.

I emphasise the need for reasonable adjustment. Sadly, it seems that things have not changed nearly enough since our investigation. In 2006, we made the point on numerous occasions that reasonable adjustments were not being made as a matter of course. The confidential inquiry builds on this by highlighting that:

“The lack of reasonable adjustments to facilitate healthcare of people with learning disabilities, particularly attendance at clinic appointments and investigations, was a contributory factor in a number of deaths. GP referrals commonly did not mention learning disabilities, and hospital ‘flagging’ systems to identify people with learning disabilities who needed reasonable adjustments were limited”.

Its recommendation therefore seems sensible and measured that reasonable adjustments required by, and provided to, individuals be audited annually and examples of best practice be shared across agencies and organisations.

The Government’s response to this is far from purposeful, saying that they will instruct NHS England to look at the possibility of strengthening provider contracts to include an annual audit. Public authorities have a duty to make reasonable adjustments, and that includes adaptations and accommodations to ensure that people with a learning disability can access healthcare on an equal footing. Back in 2006, we were clear that there was no excuse, the duty having been there since 1999. In order to move this forward, strong leadership is needed by the Government and key agencies if we are to avoid these failures persisting within the healthcare system and thousands of vulnerable people paying the price.