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15 October 2008

Learning Difficulties and the Health Service

John Barrett (Edinburgh, West) (LD): People with a learning disability are 58 times more likely to die before the age of 50 than the general population. I was stunned when I read that horrific fact in a Mencap paper, as I am over 50 and am very close to a little four-year-old girl with learning difficulties called Maria. It leaves me fearing for her future, unless we can be sure that the NHS gives everyone equal service.

I should possibly declare an interest as that little girl is my granddaughter, and she would not be alive today were it not for the dedicated team at the new Edinburgh Royal infirmary, headed by Dr. Ian Laing. Her treatment and care have been second to none, partly because communication with new-borns is to a large extent exactly the same, regardless of whether they have a disability. The parents and the medical team know how to get the information they need for the right treatment for that child. Unfortunately, the problems change as the child becomes an adult.

I congratulate the hon. Member for Newbury (Mr. Benyon) on securing the debate and on a powerful and emotional speech and the right hon. Member for Coatbridge, Chryston and Bellshill (Mr. Clarke) on his excellent contribution.

Today we heard stories of patients who died because they were not listened to or understood. It might be more difficult to communicate with some people than with others, but that can never be an excuse when deciding on their treatment. Anyone who has witnessed an accident and emergency unit at a major hospital at the weekend, when drunks who have self-inflicted wounds clog up the system and sometimes attack the doctors and nurses, is amazed at the patience and tolerance of the staff while they establish exactly what treatment is required. We need that level of understanding and patience delivered to everyone with a learning disability. It is not too much to ask, and indeed, anything less is completely unacceptable.

Some of the examples supplied by Mencap, whose work I highly commend, highlight the problem we face. People have been left for days or weeks to suffer in pain, often in extreme agony, and some of them eventually die. Mencap gave many examples; one was that of Mark, who was admitted to hospital with a broken leg, only to die after eight weeks of suffering. I mention that case because NHS staff are experts in the reduction and management of pain.

When my mother was being cared for at home while suffering from terminal cancer, we were told that she need not suffer as the pain could be brought under control. When people with cerebral palsy were asked how the condition affected their quality of life, they claimed—to the surprise of many—that the No. 1 issue was not the problem of communicating or walking, but the pain: if the pain was controlled, life could be far more tolerable, but if it was not, life could be a nightmare. That is why good communication is at the heart of the debate. Those with learning difficulties may have associated problems for the rest of their lives, but they should not have pain, and the treatment they receive in the NHS should be of the standard that we expect for everyone else.

The hard evidence that people with learning disabilities face health inequalities is simply overwhelming. From the Joint Committee on Human Rights to the independent inspection bodies who regulate and review the provision of health and social care, everyone accepts and agrees that we are facing a genuine problem. For people between the ages of 20 and 29 with a learning disability, mortality is nine times higher for men and 17 times higher for women. Forty per cent. of people with a learning disability have hearing problems. People with a learning disability are more likely than the general population to be either underweight or overweight.

In July 2006 the Healthcare Commission and the Commission for Social Care Inspection published their joint report into the abuse of people with learning disabilities in the Cornwall Partnership NHS Trust. Inspectors found evidence of 64 incidents of abuse in the five years to October 2005, including staff hitting, pushing, shoving, dragging, belittling, mocking and goading people who used the trust’s services. They also found incidents of staff withholding food, giving cold showers and making over-zealous or premature use of restraint—the list goes on. The families of those with a learning disability and carers were not involved in the delivery of services, yet staff routinely made decisions about almost every aspect of their life—whether they could go outside, which cup was to be used, how they spent their money and who lived with whom. The Healthcare Commission and the CSCI made a damning assessment of the failure of the whole system to protect adequately the people in its care, identifying a “whole system failure.”

In the Sutton and Merton Primary Care Trust, the finding of the report on learning disability services showed that they were similarly concerned, with institutional abuse being prevalent in most parts of the learning disability service. The report stated that

“the model of care was largely based on the convenience of the service providers, rather than the needs of the individuals.”

The situations in Cornwall and in Sutton and Merton are by no means unique. The excellent independent inquiry found that there had been appalling examples of discrimination, abuse and neglect of people with learning disabilities across the range of health services. Those examples all underline our systematic failure to provide the proper framework, the adequate training and the proper inspection regime needed to provide the basic levels of care and support that those with severe learning difficulties deserve.

As hon. and right hon. Members will know, the new Care Quality Commission will take over the functions of the Healthcare Commission, the CSCI and the Mental Health Act Commission. It is absolutely vital that the new Commission has the teeth and independence to make a real impact on the standard of health treatment given to vulnerable groups such as those with learning disabilities. Recommendation 7 of the independent inquiry highlights the importance of greatly improving the monitoring of the standard of general health services provided for people with learning disabilities. I look forward to hearing from the Minister today that that will be the case.

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This website was established while I was a Member of Parliament. The site content is being kept online as a source of information, but all forms / email have been disabled.