Learning Difficulties (NHS Treatment)

– in Westminster Hall at 11:30 am on 15th October 2008.

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[Joan Walley in the Chair]

Photo of Richard Benyon Richard Benyon Opposition Whip (Commons) 2:30 pm, 15th October 2008

It is a great pleasure to be under your watchful eye this afternoon, Ms Walley. I am grateful for this opportunity to discuss care for those with learning difficulties in the NHS. Only a few months ago, in a similar debate, I was fortunate enough to be able to raise the parallel issue of care for the elderly in the NHS. In that debate, I made a point that I shall repeat now for the record. Most of us receive excellent care in the NHS. It is an institution of which we are rightly proud and in which skilled and dedicated people respond superbly to the daily challenges that they face. However, as hon. Members' casework makes clear, all too many cases of neglect and failure in relation to two groups—the elderly and those with learning difficulties—show that there is a problem that must be recognised and acted on at the highest level of Government.

I am here today to give voice to the family of my constituent, Emma Kemp, who had a severe learning disability. She died in 2004 of cancer, not after months of chemotherapy or intensive drug treatments, but without receiving any treatment for it at all—and, until the last month, without pain relief—despite being given a 40 to 50 per cent. chance of survival when she was first diagnosed.

I will talk further in a moment about Emma's tragic story and her mother's brave campaign to ensure that it is not repeated for any family, but I start by acknowledging that society has come a long way in our attitudes toward those with learning disabilities. Thankfully, episodes such as the Mental Deficiency (Amendment) Act 1927, which defined people with learning difficulties in the most horrendous way, are in the past, yet Government policy has not gone nearly far enough to reduce the inequalities and discrimination faced by people with a learning disability. The discrimination that my constituent Emma faced is at odds with the values of the modern world and of the NHS. What is the point of the Government's talk about patient rights and an NHS constitution when even the most basic right to treatment cannot be provided for some of the most vulnerable people in our society?

Many hon. Members will recall that Emma's case was first highlighted in a Mencap report aptly named "Death by Indifference", about which I am sure we shall hear more in this debate. The report told not only Emma's story but those of five other people with a learning disability who suffered pain and died, perhaps unnecessarily, while in the care of the NHS. Mencap has worked ceaselessly with the families of those people and many others across the country, with PCTs and health trusts and in the media to raise the profile of those with learning difficulties and their treatment in the NHS. I have nothing but praise for the fantastic job that Mencap has done in supporting Emma Kemp's family and for its campaigning work.

Let me state clearly that this debate is not about knocking one or even six hospitals or GPs and clinicians; it is about facing up to a systemic failure. Understandably, the injustices revealed in "Death by Indifference" provoked a media and public outcry. In response to the criticism, the then Secretary of State for Health, Ms Hewitt, to her credit, announced both a health ombudsman's investigation into the six individual cases and an independent inquiry to investigate the general health inequalities experienced by people with a learning disability.

Although we are still waiting for the health ombudsman's report, the independent inquiry chaired by Sir Jonathan Michael published its report just after Parliament went into recess this July. The report contained criticism of current practices and made a host of recommendations, many of which would have made a difference to my constituent Emma's chances of survival if they had been accepted practice at the time.

As I have said, Emma was a lively and loved 26-year-old with a severe learning disability who was living in a supported living environment close to her family when her mother noticed that Emma was losing her appetite. Emma's mother, Jane, for whom I have enormous respect, is one of those rare people whom one meets in such a role. She is a real campaigner and has been a fantastic witness in presenting the case for Emma and similar people throughout the country. Jane took Emma to a GP who, although Emma had not eaten for eight days, sent them away, saying that it might be a virus. Not satisfied with her daughter's diagnosis, Jane took Emma to her own GP, who advised that Emma be admitted to hospital. Despite Emma's obvious pain and distress, the medical professionals could not diagnose a physical problem. It was left to Emma's family to point out to doctors that Emma had a lump in her groin, which they had found while helping to wash her in hospital.

Emma's learning disability meant that she exhibited challenging behaviour. She was frightened of being in hospital and of being examined by doctors. Nevertheless, the doctor investigating the lump in her groin was able to take a biopsy under local anaesthetic. After that, despite the fact that Emma was still not eating, she and her mother were sent home from hospital with painkillers in oral tablet form, although it was understood that Emma could not swallow tablets. Once at home, Jane was left to chase the medical professionals for Emma's diagnosis. Finally, on 18 June 2004, Emma was diagnosed with type B1 lymphoma, which attacks the lymph nodes and can enter the bloodstream. The doctors gave Emma a 40 to 50 per cent. chance of survival but said that Emma's behaviour meant that they could not treat her.

What the doctors failed to understand was that due to her learning disability, Emma lacked the capacity to consent to treatment. Just because Emma was in pain and frightened of the treatment that the doctors wanted to give her did not mean that she understood the consequences of refusing treatment or that she was choosing to die. I do not understand why the doctors did not listen to Emma's mother, who demanded treatment for her daughter, or apply their own General Medical Council guidelines. The guidelines are specific. They make it clear that if a patient has no capacity to consent, doctors should make all attempts to make the patient as comfortable as possible so that they can be treated. The fact that one of the doctors could take a biopsy of the lump in Emma's groin is evidence that, with the right approach, it would have been possible to treat her. However, instead of receiving treatment, Emma was sent home—still starving, in immense pain and without a solution for providing her with pain relief.

Five days later, alarmed by Emma's continued distress, Jane brought her back to hospital, where she languished for a further two days without any pain treatment. By that time, Emma had also stopped drinking. So determined was Jane to protect her child from the pain that she instructed a solicitor to serve notice on the doctors to start pain relief. When even that made no difference, the solicitor started an action in the High Court, which had the desired effect. The hospital finally provided Emma with pain relief in a patch.

Emma's mother also demanded a second opinion, which showed that Emma had only a 10 per cent. chance of survival. Reluctantly, Emma's mother agreed to palliative care, which was provided through an excellent facility in the Newbury community hospital called the Rainbow Room. Emma died there on 25 July 2004.

As I said earlier, we are still awaiting the report from the health ombudsman, but it appears possible that the large reduction from a 40 to 50 per cent. to a 10 per cent. chance of survival may have been based not on the spread of the cancer but on the capacity to consent. Should that be true, it is indeed alarming.

Reading Sir Jonathan Michael's excellent report, it is easy to see what a difference his recommendations could have made to prevent the tragic delays and failure to provide treatment that I outlined. Two of his recommendations stand out. The first is:

"Family and other carers should be involved as a matter of course as partners in the provision of treatment and care, unless good reason is given".

As hon. Members know, had doctors listened to Emma's mother's instinct that there was something seriously wrong with Emma's health when she first stopped eating, who knows how early they could have caught the cancer? Mencap says that too often the parents and carers of people with learning disabilities are ignored by medical professionals, despite the fact that their knowledge is vital. It is they who live day in, day out with the individual with the learning disability, and it is they who will be the first to notice behavioural changes and be able to help to interpret non-verbal communications of pain and distress.

Another crucial recommendation of the inquiry states:

"Those with responsibility for the provision and regulation of undergraduate and postgraduate clinical training must ensure that curricula include mandatory training in learning disabilities. It should be competence-based and involve people with learning disabilities and their carers in providing training."

At the moment, medical professionals do not understand enough about people with learning disabilities, but understanding their health needs and the ways in which they communicate is crucial. Research commissioned by Mencap found that 75 per cent. of general practitioners had no training to help them deal with patients with learning disabilities and that 95 per cent. felt that a patient's learning disability made it more difficult for them to make a diagnosis. Even doctors acknowledge that they need to be given the confidence to intervene early and to take seriously the health needs of a person with a learning disability. In evidence taken by the independent inquiry, three quarters of health and social care professionals who responded mentioned the need for better education and training for staff.

Will the Minister tell us when we can expect to hear the Government's response to the independent inquiry? It made 10 very good recommendations. We have had good assurances from Ministers about it, but we want action and to know how the recommendations will be implemented. Mencap, the families of the six people whose cases were described in the "Death by Indifference" report, and many hon. Members are calling on the Government to accept all the recommendations in the inquiry. It is worth noting what the chief executive of Mencap, Jo Williams, said on the day of the report's publication:

"The independent inquiry proves that people with a learning disability are being discriminated against in the NHS, which is leading to unnecessary pain and death."

She continued:

"It is clear that there is a desperate need for mandatory learning disability training for all health care professionals, and for people with a learning disability and their families and carers to be at the centre of all decisions made surrounding their healthcare."

The health inequalities faced by people with a learning disability are not limited to Emma and the five other individuals referred to in "Death by Indifference". The Department of Health reports that there are 1.5 million people in this country with a learning disability, an estimated 40,000 of whom have a profound and multiple learning disability such as Emma's. People with a learning disability have higher health needs than the rest of us, yet many of them receive some of the worst treatment. For example, they are three times more likely to die from a respiratory disease, have a higher risk of coronary heart disease—the second most common cause of death among those with learning disabilities—and higher rates of gastrointestinal cancer and stomach disorders. We need to hear today what the Government will do to respond to this growing need.

Why the Government have taken so long to improve the services available to people with a learning disability is beyond me. In his first speech as Secretary of State for Health, a year ago, Alan Johnson admitted that people with a learning disability face some of the greatest health inequalities. What action has been taken to resolve such inequality? If the Government had taken action after Mencap's first report, "Treat me Right: Better Healthcare for People with a Learning Disability", published in 2004, which outlined the same types of inequality as those we are discussing today, how many lives might have been saved? That report made very clear and open recommendations, many of them very similar to those made in Sir Jonathan Michael's report. The independent inquiry states that

"leadership is essential to deliver policy effectively for vulnerable groups in society".

We want to hear from the Minister that the Government are stepping up to the call for leadership.

It is not only hon. Members here today who are concerned about the treatment provided to people with a learning disability. Back in May our very own Joint Committee on Human Rights published a report on the human rights of those with learning disabilities, and found that

"for many adults with a learning disability, the violation of their human rights is seen as a normal part of their everyday lives".

The Committee expressed concern that adults with learning disabilities in health and residential settings suffer neglect, abuse, discrimination and indifference. It also stated that

"the Department of Health could do much more to promote a culture change and a human rights-led approach".

It seems that once again we return to failures of leadership from the Department.

Debates on health inequalities are too often focused on dry statistics and numerical calculations of outcomes. What we have talked about today is a real human tragedy, and I hope that I have helped the Minister to understand the human cost of health inequalities. I leave her with the words spoken to my constituent, Jane Kemp, about her daughter, Emma: "If she had been a normal young woman, we would not hesitate to treat her." As Mencap said to me, such comments cannot be proved, because they were not recorded in health notes. However, just because discrimination and health inequalities are difficult to prove, does not mean that they do not exist.

I hope that the Government will take the recommendations of the independent inquiry seriously. We want to hear not just assurances and warm words, but whether the Government intend to implement all 10 recommendations, and if not, why not. If they do, how will that implementation be carried out, and on what time scale? I believe that the six families in the report, "Death by Indifference", deserve no less.

Photo of Tom Clarke Tom Clarke Labour, Coatbridge, Chryston and Bellshill 2:48 pm, 15th October 2008

I sincerely congratulate Mr. Benyon on obtaining this debate on this very important matter and on his very comprehensive speech. At times, it was very touching, particularly when he dealt with the important case study of which he quite rightly reminded us. This debate is about people and families and their concerns.

For some years, I have had the privilege, with Lord Rix, to Chair the all-party learning disability group. The input from Mencap and the support for our work is quite profound. I hope to turn to that in a few moments. First, however, I say to my right hon. Friend, the Minister, that nothing that I shall say in the next few moments takes away from what I think are the Government's quite incredible achievements in the field of disability over the past 10 years. In particular, I welcome her support for advocacy, which she has expressed on many occasions, and which is central to the many issues being debated.

Almost two years ago, the all-party group on learning disability met to discuss the Healthcare Commission's report into learning disability services in Cornwall. Some 18 months ago, the Disability Rights Commission, as it then was, spoke to us about the findings in its report, "Equal Treatment: closing the gap". Those reports addressed systemac failings—the hon. Gentleman has rightly used that term today—in the NHS regarding patients with learning disabilities. In his response to those reports, the Minister who then had responsibility for those matters, my hon. Friend Mr. Lewis, now the Under-Secretary of State for International Development—we congratulate him on his promotion and thank him for his great work in his former role—was quite trenchant in recognising the problems. He said that things were not good enough and that there was evidence of "systemic indifference". That is what we are addressing today.

There have been positive aspects to the Government's response to the report, as we will no doubt hear from my right hon. Friend when she winds up. In its recently published strategy on health inequalities, the Department stated that it plans to use the reduction of health inequalities for people with learning disabilities as a standard against which to measure improvements for all vulnerable groups. I strongly welcome that, and I hope that the Minister will bring us up to date not only on those plans but on the Government's thinking as we move forward.

The Government's independent inquiry, published in July, to which the hon. Gentleman has referred, points us in the direction in which we want to go. It recommended that the Department should

"immediately amend Core Standards for Better Health, to include an explicit reference to the requirement to make 'reasonable adjustments' to the provision and delivery of services for vulnerable groups, in accordance with the disability equality legislation."

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.

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:

"On the third day I asked one of the nurses if she knew why Laura wasn't speaking. She looked surprised and said: 'Can she speak?' I told her that Laura could speak as well as anybody else. There was no reason for anybody to assume otherwise. I went back in to see Laura and I offered her a pen and paper, thinking that she might be able to communicate with me that way. Laura couldn't even hold the pen. When I saw the pen roll on to the floor, I suddenly thought, oh my god, she's had a stroke."

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

Photo of Richard Benyon Richard Benyon Opposition Whip (Commons)

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?

Photo of Tom Clarke Tom Clarke Labour, Coatbridge, Chryston and Bellshill

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.

Photo of John Barrett John Barrett Shadow Minister, Work & Pensions 3:00 pm, 15th October 2008

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 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 Mr. Benyon on securing the debate and on a powerful and emotional speech and 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.

Photo of Angela Browning Angela Browning Conservative, Tiverton and Honiton 3:06 pm, 15th October 2008

I congratulate my hon. Friend 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 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, 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 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

"for Serious Medical Treatment are particularly low across the whole country, raising concerns about the extent to which the NHS is, at present, complying with the requirements of the Act."

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.

Photo of Stephen O'Brien Stephen O'Brien Shadow Minister (Health)

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 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?

Photo of Angela Browning Angela Browning Conservative, Tiverton and Honiton

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

" doctors do not agree with the statutory duty to make referrals. They choose to disregard it".

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, 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.

Photo of Martin Horwood Martin Horwood Shadow Minister (Environment, Food and Rural Affairs) 3:19 pm, 15th October 2008

I welcome many of the comments already made by right hon. and hon. Members, and congratulate 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.

Tom Wakefield was a humorous and sociable young man and a well loved son, brother and twin. He was born with profound multiple learning disabilities but could understand speech and was able to communicate using facial expressions and arm movements. He needed support in most things in his life, but gave plenty of affection and humour in return. I am in absolutely no doubt that Tom Wakefield would be alive today if he had not had a disability.

Tom was in a residential school in Oxfordshire and had a very close relationship with his family, including his twin sister, Judy. However, as the time came for Tom to leave his school, his family found that no plans had been made to find him an appropriate placement. At the same time, Tom's health was deteriorating; he was losing weight and expressing signs of pain and distress. Tom's mother, Sara, describes calling the school every evening to find out how her son was and hearing him crying in pain, each night for months on end. She kept raising her concerns about Tom's health but she was told that his problems were behavioural, not physical.

Attempts to get Tom's GP to listen to Tom and respond to the pain that he was in failed. Tom's GP did not listen to Tom's mother, Sara, and investigate why Tom was in such distress. From my own background in a dementia charity, I know how important it is for professionals to value the unique bond that people with communications difficulties have with their carers and their families, and for the insights of their families to be listened to and acted on.

Eventually, Sara got Tom to an outstanding specialist, Dr. Julian Amory, who recommended investigations into his oesophagus to see if that was the cause of his pain and distress, but those investigations were never carried out. Problems with digestion are common in people with profound learning disabilities and can be managed well, but only if they are investigated and diagnosed.

In the autumn of 2003, Tom's health was deteriorating and his behaviour was getting worse too, as might be expected given the pain that he was in. The school gave him six weeks' notice to leave. Social services then found him a place in an NHS in-patient facility in Cheltenham's Delancey hospital. The family were not persuaded that this was a good idea, but they were at least told that medical assessments would be carried out and they might discover why Tom's health was declining so rapidly. However, the ward was a psychiatric ward and, once again, no physical investigations took place. Tom was no nearer receiving a diagnosis for his increasing pain and he received no pain relief treatment. His health and behaviour deteriorated further. I think that hon. Members will agree that his story, by this stage, is the stuff of nightmares.

Tom was in such serious pain at this point that the only way that he could express it was to use his fingernails to scratch his head so hard that he drew blood. His family were desperate to get him help, but they were unable to get the health or social care professionals who were involved in his life to respond.

Finally, after two and a half months, a place was found for Tom at Prospect Place in Cirencester. In an all-too-rare example of good practice, staff there quickly realised that he was in serious pain and was physically very unwell. They had him admitted to Cheltenham general hospital, where he was found to have an ulcerated oesophagus. If Dr. Amory's recommendations had been followed, that problem would have been discovered years before and action could have been taken in time. By this stage, however, Tom's oesophageal tract was in a bad state. It would have been causing him intense pain and distress for a long period of time and it would also have made it very difficult for him to eat. A feeding tube was put into his stomach, to try to get much-needed nutrition into him. Even then, that tube was removed and Tom was left for long periods of time without appropriate food and nutrition. Tom's twin sister, Judy, recalls desperately trying to get the consultants in the hospital to see how valuable his life was, explaining that the young man in the hospital bed was "the other half" of her, with a life equally worthwhile.

Tom Wakefield died of aspiration pneumonia and reflux oesophagitis in May 2004. His family were forced to watch him suffer for two and a half years, unable, until the end, to get any health professional seriously to investigate what was wrong with him and make efforts to help. Tom was passed from hand to hand, with professionals finding it impossible to take responsibility. All the while, his family continually fought a system that was supposed to be caring for him.

When Tom's family entered the complaints process, in an attempt to get justice for Tom, they found that the discrimination that he had experienced in his life continued after his death. The Healthcare Commission's response to their complaint suggested that Tom could not have expected better, stating that

"individuals like Tom are unique" and

"the medical needs of disabled people like Tom with complex physical and mental issues are rarely well met by generic services".

Do we have a national health service that is unable to meet the needs of an entire section of the population because their needs are too complex? I do not believe that that is acceptable and I am sure that the Minister does not think it is either, not least because Tom's needs were not "unique". Indeed, the numbers of people with profound and multiple learning disability is increasing. All such people need to be able to access health services to keep them well, and the NHS needs to respond to the increase in their numbers. It is not acceptable to assume that specialist services will always fill the gap. People with a learning disability must be able to access mainstream as well as specialist health care, or in some cases we will be condemning them to no health care at all.

It is impossible to listen to Paul, Sara, Judy and Richard Wakefield and not be touched by the bravery that it has taken, and continues to take, for them to share this awful episode in their lives with the world, knowing that it will not take away what they have been through, but doing so in the hope that it might bring about change in the future for disabled people and their families. Mrs. Wakefield continues to work with profoundly disabled children in Cheltenham and, along with the rest of her family, she is determined that what happened to Tom must not be allowed to happen to anybody else.

Tom's story was the germ for Mencap's "Death by Indifference" campaign, and I would also like to pay tribute to Mencap for its exceptional work on this issue. My hon. Friend John Barrett referred to an earlier Mencap report and in 2006 the Disability Rights Commission highlighted the fact that people with learning disability were not receiving equal health care. The evidence of poorer health and poorer health care was already mounting, but it was not enough to prompt action. It was not until this inequality was thrust into the light by stories such as Tom's that this issue really received the attention that it deserved.

In response to "Death by Indifference", an independent inquiry was established and that inquiry has now reported; I commend the report to the Minister. It confirms what many people have been saying for a long time—that people with a learning disability are not receiving equal health care—and makes strong recommendations about what needs to change. In my view, the overarching message from the report is that, despite reams of legislation and policy, the NHS is still not meeting its obligations to people with learning disabilities.

With good training, some of the steps that need to be taken are astonishingly simple. For example, there should be longer appointment times, to give health professionals time to communicate properly with their patients who have a learning difficulty. Tom could answer yes/no questions with very clear arm gestures, but his family found that the vast majority of doctors and nurses did not have time to communicate directly with him, despite the family's explanations of his means of communicating with them. Those health professionals needed to take more time to understand Tom and to communicate with him on his own terms.

As my hon. Friend the Member for Edinburgh, West said, communication is key to every doctor-patient relationship. However, as is the case with people with dementia, more creative ways are needed to understand patients with a learning disability who find speech difficult or who do not understand how to explain their symptoms. If any of us were in hospital following an accident that left us unable to speak, we would rightly expect our doctor to make every effort to discover what was wrong, to read other signs and to use tests to rule out serious problems, but no one tried to rule out serious problems in Tom's case. Tom could not tell the doctors that he was in pain, or where the pain was, so his pain was ignored. He needed health professionals who would not simply dismiss his changes in behaviour as part of his learning disability but who would instead ensure that any physical causes of distress were eliminated.

Tools such as the disability distress assessment tool, or DisDAT, which was developed in St. Oswald's hospice in Gosforth, use the knowledge of family and carers, with careful observation of patients with profound and multiple learning disabilities, to enable health staff to spot signs of distress and ensure that pain can be identified and managed.

I was delighted to see Sir Jonathan Michael recommending in his report that families should be included as a matter of course as partners in the provision of treatment and care. If Paul and Sara Wakefield had been listened to, their son might well be alive today. The Department of Health needs to ensure that the involvement of family, as recommended by Sir Jonathan, is embedded into practices across the NHS.

Tom's story also highlights the interconnected failures that people with a learning disability and their families often face. Tom's father had to give up his permanent teaching job to find his son a suitable place to live when he left school, and even with that sacrifice the hospital that Tom was sent to initially was a totally inappropriate stop-gap. Tom went there because, despite years of warning, social services had not found the time to plan where he could go after he left school. It was left until the situation reached crisis point and then this vulnerable young man, whose health was going downhill fast, was, frankly, dumped in the only place that had space for him. Only later was Tom cared for, diagnosed and noticed in a way that his parents had sought for so long, and it was only then that they discovered that he was a very ill young man.

Speaking to his family today, I know that they are still understandably angry, but they are also increasingly impatient. I call on the Government to accept the recommendations of the independent inquiry in full. Training and the involvement of families are, for me, the absolute top priorities. Therefore, I also call on the Government to ensure that they respond separately to those specific matters, so that this issue does not slip from the radar and the report does not become another dusty report on a shelf. It should lead to real change, and we should all know when that change will take place.

Photo of Sandra Gidley Sandra Gidley Shadow Minister, Health 3:29 pm, 15th October 2008

I congratulate Mr. Benyon on introducing this debate, which has been very moving. The fact that there have been so few interventions indicates how powerful some of the speeches have been.

Debates such as this are often prompted by constituency casework, but the individual stories we have heard today are probably indicative of a wider problem. We have heard the stories of Emma and Tom, and there are other cases in the report. I was taken by the story of Warren, who died aged 30 following perforation of the appendix. His mother and father repeatedly asked the doctors who visited him whether he had appendicitis or a blocked bowel, but they were told that he had a virus. Warren died on 25 September 2004. He had a severe learning disability and very little speech, but he could make himself understood to his family.

A powerful theme developed today is one of families being ignored, and we ignore it at our peril. I have come across the ethos many times in constituency cases of people with a lesser learning disability, but it does not always involve dismissing problems as part of the condition. Sometimes the problems are caused by professionals viewing the person as an adult who has rights but taking no account of the fact that that adult might have a low mental age. One would not necessarily treat a six or seven-year-old without recourse to their parents, who might understand their condition. Factors in society such as political correctness sometimes militate against best practice.

The two most powerful comments today were made by the hon. Member for Newbury, who said that the doctors did not listen to Emma's mother, and by my hon. Friend Martin Horwood, who said that Tom would be alive today if doctors had listened to Paul and Sara Wakefield. One cannot dismiss those examples as individual cases because similar problems were uncovered in the Cornwall Partnership NHS Trust and the Sutton and Merton primary care trust. Again, the behaviours uncovered were bad enough, but the problems in those cases had been raised by parents, carers or friends. The biggest scandal is that it took the authorities such a long time to listen to them, to investigate properly and to start to do something. Many people were involved.

We heard some facts about learning disability, but it is worth repeating them briefly for the record. People with learning disabilities have poorer health and receive poorer health care than the general population. My hon. Friend John Barrett opened his comments by saying that a person with a learning disability is 58 times more likely to die before the age of 50 than someone from the general population. In some respects, the problems are the same as for mental health. Health professionals often do not see beyond the initial diagnosis to the problems underneath. That goes back to fundamental problems of lack of training specifically in dealing with people with disabilities.

People with learning disabilities are also more likely to have health conditions such as epilepsy, heart disease, gastrointestinal problems and cancer. They are more likely to develop mental illness and Alzheimer's, and are much more likely to have problems with weight. It really is not much fun.

I pay tribute to the work done by Mencap, in particular the "Death by Indifference" report. It highlighted the extent of the problem and led to the independent inquiry mentioned by previous speakers. The inquiry, conducted under the leadership of Sir Jonathan Michael, confirmed that people with a learning disability are not receiving equal service and that legislation designed to ensure equality is not being followed. The report made a series of recommendations, and, understandably, Mencap is keen to have all of them adopted.

The inquiry took the view that much stronger action is required at all levels to deliver equal access to routine health care services, including ill health prevention, health promotion and timely action to address general health problems. I shall briefly mention some of the findings of the inquiry.

Problems of access have been mentioned, but a fundamental underlying problem is that trusts and the people who are delivering services do not seem to realise that it is their responsibility to make reasonable adjustments to support the delivery of equal treatment. They say that they are not discriminating—they feel that they are treating everybody in the same way—but they do not realise that the required method of delivery or communication may be different, and that neglect in that category means that people are not actually receiving the service that they need.

The biggest problem identified is that parents and carers are often ignored. If the Minister does little else today other than undertake to deal with that specific problem, many of the other measures will follow. The inquiry found that there is limited knowledge among health service staff and that there is a strong need for training and education. Partnership working is poor, so there is little joined-up thinking between health and education providers.

It was not in the report, but my hon. Friend the Member for Cheltenham highlighted the problem that often arises when people with learning difficulties transfer from child services to adult services. There is often a gap—a lack of forward planning. Hampshire county council has just introduced a slightly bizarre system in which the transition worker is somebody who does not know the person who has been under the care of the local authority for 18 years. I find that hard to understand.

Witnesses described appalling examples of discrimination, abuse and neglect across the range of services, particularly in primary care. We often look at the more acute end of the spectrum—secondary care—in which the horrible examples that we heard today happened, but much that happens in primary care could be improved to make the entire experience much better.

We lack data on this group of people and their experience of services. Depressingly, we do not need more legislation, for there is plenty of legislation and guidance. The problem, as highlighted by Angela Browning, is that people are being ignored. She said that doctors disregard their duty. There are ways to take action against those who are guilty of dereliction of duty, but people are too busy fighting the system to think of doing that.

I do not wish to be entirely negative because there are examples of good practice. In Westminster, local enhanced schemes are being developed. In Bristol, a learning disability specialist provides input to public health teams. Torbay has a record system that highlights someone who has a communication problem, and Sheffield and Gloucestershire have a traffic light scheme that signals special needs. There are other examples, but I do not have time to go through them all. Good things are happening, but we need to find a way to spread best practice. That is something that the national health service does not do very well anyway, but it seems to be particularly poor in this area.

Some of the recommendations made have been mentioned. It would be helpful if, when the Minister sums up, she could give some indication of what notice the Government are taking of the recommendations, particularly those to do with training in learning disabilities. It should be mandatory not just for doctors but for all health service workers. Are there any plans to provide such training?

Are there any plans to collect data? How will parents and families be involved, and what onus will be put on PCTs to identify and assess the needs of people with learning disabilities and their carers? If PCTs do not know what needs to be done, they will not commission services.

Does the Minister have any plans for a confidential inquiry into premature deaths among people with learning disabilities? Many charities have called for one. There were other recommendations but, again, time precludes my mentioning them.

I just mention "Valuing People", which was published in 2001. The hon. Member for Tiverton and Honiton discussed that valuable and useful document. It dealt with people having rights and the importance of their being included in local communities, having choice in daily life and having real chances to be independent. There has been some good initial work, but there are many signs that efforts are almost going into reverse because of financial pressures on local authorities.

I conclude with an article that sums up the situation. A lady called Jean Wilson, who is a carer, says that she "has a PhD" in the breadth of the challenges that she has faced in trying to secure adequate health care for her daughter, who is now 38. She stated:

"We get to go to the best London teaching hospitals, but still we get aggravation...It's about accessibility, understanding and language, but it's more about attitude. We were recently waiting in a corridor for a blood test and Victoria was yelling a bit. I heard the technician say to a colleague: 'I'm not having that in my room.'

There was a time when I would have smacked round the head with my handbag, but I've learned to behave myself. I just walked up to him and said: 'Have you got a problem with my daughter? Because if you have, I am going to go away to find your chief executive and discuss your discriminatory practice.' I find that works wonders."

None of us would have blamed her if she had smacked him round the head with her handbag, but to avoid that in future it would be helpful if the Minister told us how she is going to tackle the problem.

Photo of Stephen O'Brien Stephen O'Brien Shadow Minister (Health) 3:40 pm, 15th October 2008

I, too, congratulate my hon. Friend Mr. Benyon on securing this important and timely debate. He mentioned that over the past few years he has supported his constituent, Jane Kemp, during the still ongoing complaints process into the death of her daughter Emma. We heard a moving account from my hon. Friend. Likewise, the other hon. Members who have expressed their testimony on behalf of their constituents are in a similar position.

My hon. Friend's speech, and other hon. Members' contributions to this vital debate, will, like all other speeches in this place, be recorded word for word for ever, but unusually, unlike so many of the speeches made in the House, those made today will also have the added merit of being memorable and therefore influential in terms of trying to shift the whole legislative, statutory and attitudinal basis for making improvements as we go forward.

In the Chamber today are two Members of Parliament from Scotland, where many such matters are devolved, and are acknowledged as such. It is important that we see the universality of the issues and recognise that, although our responsibility in this Chamber is effectively under English jurisdiction, there is cross-reference that is valid and important.

Given that this debate is substantially concerned with the independent inquiry into access to health care for people with learning disabilities, by Sir Jonathan Michael, published in the recess, and given that the inquiry report's 10 recommendations apply to the Department of Health, or to its sphere of influence, and given the seriousness of the failings—involving people's lives—that the inquiry is seeking to reverse, it is vital that the Health Minister, who is here listening, is also here to act. As a former Treasury Minister, she knows more than most how to flex the channels and influence the Government to find the necessary funds to support the action called for today. I am much encouraged that she is the Minister answering the debate.

During his speech, my hon. Friend the Member for Newbury mentioned the importance of training for doctors and nurses in how to engage with and meet the health needs of those with a learning disability. There is clearly an advantage to both undergraduates and those already registered having meaningful contact with individuals with a learning disability and their family carers to improve their understanding of what it means to have a learning disability.

I, too, pay tribute to all that Mencap has done over many years, under the initiative and leadership of Lord Rix and also, more recently, under Dame Jo Williams, whom I first met when she was in charge of Cheshire social services, when I was first elected. I pay tribute to her, and all her colleagues, not least because of their influential "Death by Indifference" report.

Mencap has highlighted the case of Cathy, who has Down's syndrome. Cathy visited an audiologist for a hearing test, as she had experienced a little discomfort. That should have been a routine procedure, but, sadly, as the audiologist did not know that people with Down's syndrome have short, straight ear canals, he pushed the otoscope too far into Cathy's ear and perforated her eardrum. It was not possible to repair the perforation and Cathy has had to wear a hearing aid ever since.

My hon. Friend Angela Browning mentioned the Government's recent announcement that the provision of annual health checks for people with a learning disability will be one of the five new categories of directed enhanced schemes included in the general practitioner's contract. That is good news. However, as my hon. Friend said, the evidence for the positive impact that annual health checks can have on the health of people with a learning disability has been clear since 2001. The Australian evidence that she cited has given us confidence that it is effective.

The Welsh Assembly has provided a financial incentive to GPs to introduce regular health checks for people with a learning disability since April 2006. Initial findings are that, in the first year, 51 per cent. of those with a learning disability who received a health check had a newly identified health need and 9 per cent. had a serious health problem. Subsequent checks a year later identified further new health needs among 68 per cent. of those tested and serious problems were identified in 11 per cent. of those people.

Some primary care trusts, such as the one in Birmingham, have already commissioned directed enhanced services in their areas to provide annual health checks. In Birmingham, out of 1,500 health checks, 205 previously unknown health problems were identified.

Bearing all this in mind, it is no surprise that, back in 2001, the Government first acknowledged the value of annual health checks in their policy paper, "Valuing People", which hon. Members have cited. Some 18 months ago, the Government said:

"We agree that health checks are the most effective way to improve the health of people with learning disabilities".

Therefore, the Department of Health has known for a long time what is needed to ensure that people with a learning disability get equal health outcomes—indeed, it has known for seven years. Despite all the evidence that such provisions would have a major impact on addressing health inequalities faced by people with a learning disability and that those would have helped them overcome the barrier of access and entry into the health care system, the Department did not give priority to ensuring that good practice was implemented until just last month. We had been questioning the Government about how they were dithering. Let us acknowledge that the implementation has now happened and let us hope that the Minister will say that they will not dither over certain matters that we have identified and that they will go forward.

In July 2006, the then Secretary of State for Health was asked the following question:

"one of the important recommendations in 'Valuing People' back in March 2001 was that everyone with a learning disability should have received a

'Health Action Plan by June 2005.'

Will the Secretary of State say whether that has indeed happened? If it has not happened yet, when will it have happened?"—[Hansard, 11 July 2006; Vol. 448, c. 1257.]

Ms Hewitt responded, saying:

"I understand that some areas have put those in place for all people covered by the recommendation. However, that is not the case universally".—[Hansard, 11 July 2006; Vol. 448, c. 1258.]

I hope that the Minister will tell us in a moment whether, two years since that exchange and seven years after the promise was made, health action plans have been rolled out across the country. If not, will she agree to write to me, listing the places where they have and have not been put in place?

The impact is clear. For example, people with learning disabilities and other health problems, such as diabetes or stroke, such as the moving case that we heard about from Mr. Clarke, have fewer measurements of their body mass index taken than others with diabetes, and those with stroke have fewer blood pressure checks than others with stroke. They often experience diagnostic overshadowing, which is when reports of physical ill health are viewed as part of the learning disability and may not be investigated or treated.

A central principle of our NHS is that care should be available to all, free at the point of use and according to need, not ability to pay. Yet for those with a learning disability access to services is often far from ideal. I pay tribute to the work of Diabetes UK with Speakup, the self-help and advocacy charity, to produce accessible information and education to ensure that people with learning disabilities are able to have their health needs met by primary care services: GPs, practice nurses and other staff. Diabetes UK and others are calling for work towards improving early intervention for high-risk groups and flexible and integrated care packages for vulnerable people with diabetes. I hope that the Minister will outline what work the Government are taking forward in those areas.

Part of the problem is that, as usual, the Government are avoiding collecting the data needed to be able to assess accurately the health inequalities experienced by people with a learning disability. For example, as my hon. Friend the member for Tiverton and Honiton commented, the independent inquiry calls for an increase in the number of learning disability liaison nurses and health facilitators. Can the Minister tell us how many there are at the moment? I suspect that she will have to say, "Of course not." Can the Minister tell us how many of each are on permanent and fixed-term contracts? Again, I fear that she cannot. Can she even tell us how many NHS trusts have a disability equality scheme or how many people with a learning disability have a health action plan in place? I fear that she cannot. There is a grave danger that by not collecting information centrally we do not have the data on which the relevant action can be taken under ministerial direction and guidance. There is a mismatch between aspiration and the data required.

One reason why people with a learning disability seem to face such health inequalities might be found in the fact that 30 years ago at least 60,000 people with a learning disability lived in long-stay hospitals. Although those numbers have been reduced, many of the services that are needed to replace them, in the community, have not come through and have not been available. Poorer people, in particular, experience difficult access and poorer health outcomes. I should be grateful if the Minister stated explicitly how the Government will respond to each of the 10 recommendations in the Michael report. I shall not list them because they are well known, and I prefer to give the time to the Minister for her response.

An important point was made a moment ago about the 18-year-old cliff edge, and I want it to be well understood. I look forward to the Minister's response, and hope that she will implement the independent inquiry's recommendations, which we have discussed, as well as the full involvement of families—we heard about that especially in the case of Tom, described by Martin Horwood. Let us ensure that the medical profession conforms to its statutory duty, and thus enables advocates to have teeth.

Many families of people with learning disabilities report that some doctors, consciously or unconsciously, believe that their son's or daughter's health problem is a result of the learning disability and that not much can be done about it. That is a dangerous assumption and, as we have heard today, can lead to undiagnosed or misdiagnosed conditions.

Photo of Dawn Primarolo Dawn Primarolo Minister of State (Department of Health) (Public Health) 3:50 pm, 15th October 2008

I congratulate Mr. Benyon on securing this important debate, and I hope that he understands that if hon. Members take longer to read out questions than the time that I have left to reply, it is regrettably not always possible to answer each one.

I apologise on behalf of the new Minister for Care Services, my hon. Friend Phil Hope, who is attending a Standing Committee and unable to attend our debate here. I know that he shares his predecessor's concern about the issues that hon. Member have raised, and that he is equally committed to putting matters right. Those issues are also at the front of the Secretary of State's mind. Earlier this summer, he met the families of those patients whose tragic deaths are described in the report, "Death by Indifference". He has maintained a close personal interest in the ongoing inquiry.

I have listened carefully to what has been said this afternoon, and I thank the hon. Member for Newbury and other hon. Members for speaking with such passion and clarity on such a vital issue. The principles that govern the NHS are simple, powerful and enduring. We believe that it should be inclusive, responsive and compassionate. Those qualities are paramount when providing health care for people with learning disabilities, who may have multiple needs and require a tailored approach.

Angela Browning spoke powerfully, as she always does on such issues, as did other hon. Members, and made it clear that such qualities are not being met in every setting for every patient. That cannot be tolerated. She pressed the Government on a number of issues, and I shall respond to them.

I share the hon. Lady's dismay at the evidence that medical practitioners are disregarding the requirements of the Mental Capacity Act 2005. When I leave the Chamber, I shall ask my officials immediately to take up the issue and to report back to my hon. Friend. I agree that the abuse of people with learning disabilities is absolutely unacceptable—I can think of no other words to state that more strongly—and that we must take the matter forward. Other hon. Members spoke eloquently, and I agree with them that it is necessary to listen to family members. My officials are working closely with the National Family Carer Network to ensure that their concerns are addressed, and that families are given support and are listened to as an expert partner.

Other issues of transition were also raised. The Government are taking work forward to unblock the processes, and to combine assessments to ensure that young people with complex needs have that smooth transition that the hon. Lady so eloquently identified. As Sandra Gidley said, there are many examples of outstanding work throughout the country, and of health and care professionals working together to deliver for people with learning disabilities, and going that extra mile. That shows that the NHS can do it, which makes it all the more unacceptable if parts of it do not.

The family cases that hon. Members described are deeply distressing, and inexcusable. They are anathema to what the NHS represents and, as my right hon. Friend Mr. Clarke said, addressing inequalities has been one of the most important priorities for the NHS, but much remains to be done, and we are not shirking that.

Much has been said about the Government's alleged inactivity in many areas, and I want to make a couple of points before going on to say what we shall do next. The Government have taken action to improve access to health care through the operating framework for the NHS for 2008-09. We have specifically directed improvements in the NHS in the quality of care for people with learning disabilities and inequality of access to care. That includes developing personalised plans that address health and care needs. We have directed enhanced services for GP practices to provide annual health checks. That is not all we have done because we were doing things previously, which are in progress, but we are going further.

We have published the primary care service framework to support PCTs to deliver that better primary care. We have launched the national awareness campaign to examine education and the programmes that we need to introduce and which hon. Members rightly identified. We have also made clear what we intend to do in the next stage review. We want to ensure good practice so that everyone can expect the health care from professionals that they are entitled to. We responded to the Joint Committee and have taken work forward to improve services.

We considered the report from the Disability Rights Commission and took action, but I shall not describe that because it is on the record.

Following publication of the report about abuse in Cornwall and in Sutton and Merton, the Secretary of State, the NHS chief executive and the director general of social care wrote to the NHS and social services, reminding them of their responsibilities to provide the highest care.

There is a wider job to do, and hon. Members were quite right about driving a culture of change through the entire NHS and eradicating the problems, whether they are based on ignorance or fear among NHS staff when they encounter patients with learning difficulties.

Reference was made to Sir Jonathan Michael's report, and although I cannot pre-announce our response, I want to make absolutely clear our commitment to respond effectively to the 10 recommendations, and to ensure that our response is included in the Government's forthcoming cross-cutting strategy, "Valuing People Now." I hope that hon. Members understand why I cannot pre-empt that. My colleagues and I want deep, effective change, not a quick fix.

I thank hon. Members, Mencap and all those families who have continued to bring these important issues to our attention. We are determined to act on them, not just in the Department of Health, but throughout the Government. I am confident that we can transform the way in which the NHS responds to the needs of people with learning disabilities, and ensure that all NHS staff understand individuals, their needs and how to deliver the best possible health care and outcomes.

It is unacceptable for any trained health professional not to discharge their responsibilities for the care of any patient in the NHS. We intend to continue to make that clear, and to bring about the necessary cultural change to deliver the services that all hon. Members want for all members of our society.