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15 Oct 2008 : Column 294WH—continued

As we have heard, however, the NHS has largely failed to make reasonable adjustments to ensure that people with learning disabilities are not discriminated against. Health care information leaflets are not produced in easy-read format and they do not reach people with learning disabilities, their carers or their advocates. In many cases, no side rooms are made available for people for whom the confusion of an open waiting room and ward would prompt challenging behaviour. As a result, individuals might become stressed and feel obliged to leave, and some will be unable to access the treatment that they need.

I accept that seeking a solution to such problems, making progress and ensuring that there is not a postcode lottery means investing resources. I must make the point again that it is deplorable that sometimes in Scotland, there is no evidence that funding that has been clearly allocated for specific purposes is being spent on those purposes. That applies especially in relation to the Barnett formula and in the field of learning difficulties. I understand that in addition to the £34 million for disabled children and their families that was allocated to the Scottish Government under the Barnett formula—we have previously debated that matter in this Chamber—a further £20 million was recently allocated specifically to the NHS in Scotland. We are still looking for evidence that that money has been going where it was intended to go. I shall not dwell on that issue, although I feel passionately about it, as it will probably be an ongoing issue in debates between the Scottish Government and the UK Parliament.

The hon. Gentleman talked about the work that many of us do with Mencap. Mine has introduced me to the numerous alarming episodes experienced in hospital by people who have learning disabilities. I warmly congratulate Lord Rix on the fantastic job that he has done on this issue, among others. He approaches campaigns with all his fervour, intelligence and experience. We must thank him and Dame Jo Williams for everything they do. I also thank the individual supporters of Mencap throughout the country, particularly parents and carers, who do so much to focus attention on these important issues through their involvement in campaigns such as the “Death by Indifference” campaign.

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One story that emerged from Mencap’s research was about Laura—an active, talkative and independent woman with a learning disability who went into hospital for an emergency operation. After the operation, she was visited by her carer, who became concerned that no matter how much she chatted to Laura, she did not say a word. The carer said:

It took doctors another two days to confirm that Laura had indeed suffered a stroke during her operation.

Mr. Benyon: The right hon. Gentleman is making a powerful speech. Laura’s case is one of the most moving that one can read. It is in the “Treat me right!” report of 2004, but we are four years on from that. Does he agree that we have to start learning from such cases—and fast?

Mr. Clarke: Way back in 1986, when I was fortunate enough to be first in the ballot for private Members’ Bills, the first person whom I met was Lord Brian Rix. Unfortunately, some of the issues that we are debating today were raised in that meeting and addressed in that Act. If I may say so, with great respect, I am not sure that it does any service to the cause that we are promoting simply to address these problems in relation to one particular Government as though they did not exist before. [Interruption.] Let me put on record that the hon. Gentleman appears to agree.

The independent inquiry also made several important points about the often sensitive health needs of children with a learning disability. They are particularly important in light of the fact that medical advances and neonatal care improvements mean that more children with profound and multiple learning disabilities and complex health needs are surviving into childhood. Of course, we strongly welcome that, but the health service must adapt to that reality.

I conclude by noting that the Government’s aim of achieving equality, by 2025, for people with a disability is a worthy one. If we can do it earlier, that will be very welcome. If the Government were to adopt the recommendations in the independent inquiry, that would go a long way toward helping the Minister and her colleagues in other Departments to achieve their goals. In that, they have our full support.

3 pm

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.

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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 newborns 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.

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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 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.

3.6 pm

Angela Browning (Tiverton and Honiton) (Con): I congratulate my hon. Friend the Member for Newbury (Mr. Benyon) on securing the debate. It was extremely moving to hear his account of Emma and the experience of her mother, Jane, in trying to get the right treatment for her.

I welcomed the setting up of the independent inquiry back in 2007 and the publication over the summer, but we should remember that some of the inquiry’s recommendations are the same as those set out in the Government’s own document, “Valuing People”, which was published as long ago as 2001. Although I do not want to fall foul of the right hon. Member for Coatbridge,
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Chryston and Bellshill (Mr. Clarke), whom I respect greatly for his knowledge and care in these matters, the purpose of today’s debate is surely to seek an assurance from the Minister that those ongoing problems and distressing matters will be addressed in such a way that we can all feel that progress is being made, and the parents and carers of those with a learning disability can feel more confident that their children are in touch with the statutory services and will be treated equally, with real understanding of their particular needs and how they can be supported.

I was particularly concerned that the independent inquiry found that very few nurses specially trained in learning disabilities were working in the NHS, as they are often the main point of contact for those with a learning disability, as we have heard this afternoon, and that is also the case with primary care services. Learning disability liaison nurses assist with admissions, help to assess needs and give help and advice to ward staff on meeting the needs of patients with a learning disability. As the inquiry states, they can challenge preconceived notions of learning difficulty and help to ensure that the patients’ lives are valued. The presence of those nurses can have a significant impact on the quality of the treatment provided to an individual with a learning disability. Will the Department of Health act on the inquiry’s recommendation that the work force of those nurses be strengthened?

The inquiry also recommended that annual health checks be brought forward for everyone with a learning disability, and although I am pleased that the Government last month announced that they would be brought in as part of the GP contract, I wonder why it has taken the Government so long to introduce them when the evidence that they work has been available for some time. For example, a study of annual health checks in Australia revealed a sixfold increase in the detection of conditions such as visual impairment and in the take-up of immunisation.

We have heard some harrowing accounts concerning individual people who were mentioned in the Mencap “Death by Indifference” report, which prompted the Government to set up the independent inquiry. Sadly, those are not isolated cases. After the publicity that the report received, the charity Mencap was contacted by a large number of people who wanted to share their stories about the experiences of people with a learning disability when accessing mainstream health services. The accounts that we have heard today, of Emma, Laura and Mark, are not isolated cases. I was particularly struck by the case, in the report, of Sara, a young woman who ended up with an 8 cm brain tumour. When she presented with symptoms she was merely given paracetamol and when it was eventually discovered that she had a brain tumour it was much too late to operate.

What struck me about the personal accounts that we have discussed was that all the people involved had parents who were by their side speaking on their behalf; presumably they were worried out of their minds—but there were people there to be advocates. I have raised that point in other debates about other forms of disability, and in particular, as hon. Members will know, about people on the autistic spectrum. We all understand that when professionals—doctors and others—come across someone whom they are treating for a physical condition,
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who presents with behaviour that is sometimes challenging and sometimes merely what I would merely describe as rather strange, or with a particularly high pain threshold, which is not uncommon in the relevant group, it is quite a challenge to get beyond that to identify the physical condition and the appropriate pathway.

We all understand the time pressures on such professionals. However, as the hon. Member for Edinburgh, West (John Barrett) said, it is a matter of communication and of giving the individual patient the time needed to get beyond what is presented. The fast track to doing that, if a parent is with the patient, is to listen to parents. Unfortunately—although I do not think that one should apologise for the fact—parents in such stressful conditions are sometimes quite emotional, and I worry that professionals, including quite experienced doctors, sometimes find their distress and emotion difficult to deal with. Perhaps instead of addressing that distress, those professionals are led by it to ignore key things to which they should give more time. However, none of that excuses the situation that we have been discussing. There is a real need to deal with it. I hope that nurses with experience in learning disability can help to be the bridge between the parent, the patient and the health professional.

Of course, not every patient has with them a close relative or carer who can explain how they normally behave, their difficulties and how they present themselves to many people. That applies particularly as people get older. People with learning disabilities get older as the rest of us do, and they may not have a close person who knows them well enough to advocate for them. As hon. Members know, the Mental Capacity Act 2005 established an independent mental capacity advocate service—the IMCAs, as they are called. I served on the scrutiny Committee for the Mental Capacity Act 2005, and on the Bill Committee, and I clearly recall, because it was only three years ago, our conversations in Committee about how the advocacy service would help to solve the problem for people in exactly the situation I have described, with no one to speak up for them or articulate their concerns. The Act also introduced a legal duty on NHS and social care staff to refer eligible people to the IMCA service.

The advocates provide a real chance to redress the health inequalities experienced by people with a learning disability, as they act as champions for those who would not otherwise have a voice. Sadly, however, as the Department’s report found, referrals from medical professionals

That does not require a lot of research or any new legislation. It concerns something that is on the statute book now. I particularly hope that the Minister will act today: if an NHS body is not putting into place what statute requires, that should be addressed extremely urgently.

Mr. Stephen O'Brien (Eddisbury) (Con): My hon. Friend is making a powerful speech. Advocacy is a strand of concern that runs right across the health and social care services and we have been examining it for
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many years. In particular, in relation to advocacy for the group of people we are considering, has any thought been given to whether the advocacy service could have some teeth—some sanction to help to prompt action, rather than simply recommendation?

Angela Browning: I agree with my hon. Friend. The same report continues by saying that

That is outrageous and unacceptable. They do not have an option; they are disregarding the requirement. The fact that it is mentioned in the report needs to be addressed as a matter of urgency.

Another issue that I want to deal with is that of people with a learning disability being prescribed anti-psychotic drugs inappropriately—as a chemical cosh. Between 20 and 60 per cent. of people with a learning disability are given psychotropic medication not as a treatment for a mental health problem, but as a medical restraint. Okay, nowadays, we have chemicals and medication that will carry out that purpose; but if it were suggested that patients should be restrained physically, rather than chemically, there would be outrage, and people would march on this place—rightly. However, a doctor can write out a script and medication can be given to the patient to keep them quiet. We understand that there are difficulties with behaviour, other patients to consider and other considerations. However, again those facts do not give an excuse for using medication in that way. The complications associated with those drugs can have serious implications for the overall health of the individual who takes them. I hope that the Minister will deal with that.

Finally, I know that the Minister’s predecessor, the hon. Member for Bury, South (Mr. Lewis), now the Under-Secretary of State for International Development, declined to widen the Department’s current review into the prescribing of anti-psychotic drugs. A report is already under way on their inappropriate use for people with dementia. It would be very welcome if the Minister agreed to broaden its scope to take in people with learning disabilities. I urge her to reconsider the matter.

3.19 pm

Martin Horwood (Cheltenham) (LD): I welcome many of the comments already made by right hon. and hon. Members, and congratulate the hon. Member for Newbury (Mr. Benyon) in particular on securing the debate and sharing with us Emma’s powerful story. Sadly, I, too, speak as the MP for a family who were failed by the services that are supposed to provide for us in our moments of greatest need. I also speak as someone who is appalled that in this day and age someone can be left in pain—ultimately to die—because they have a disability. I want to say at the outset, not least as the husband of an NHS professional, that I do not believe that there was any malicious intent at any stage on the part of school or NHS staff. Yet the system failed in the most horrific way imaginable. In practice, competent staff, whatever their intentions, discriminated in the care that they gave.

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