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15 Oct 2008 : Column 287WH—continued

Rugby league is a fast-growing sport and it is important that we try to give support to the national league and to the other leagues right across the country that rugby league has been developing. In the last two years, rugby league has experienced a 27 per cent. increase in participation, with almost 250,000 people currently involved
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as players, coaches, match officials or volunteers. The Active People survey reports that more than 110,000 people take part in rugby league at least once a month. Furthermore, in Halton, my hon. Friend’s constituency, Sport England has invested £44,000 over three years in its contribution to a rugby league development officer, who is charged with getting more people to participate in rugby league in that area.

I am also pleased to say that participation among women and girls has also seen a healthy year-on-year increase of 42 per cent. There are now 579 girls registered with age groups from under-12s to under-16s, and the RFL runs festivals for girls fortnightly between March and October.

As my hon. Friend has said, it is important that football and rugby clubs become the heart of their communities. I know that the investment has gone in from Halton borough council to the Widnes Vikings club, to try to increase participation and ensure that more people are involved in sport, so I understand that it was a great disappointment to everyone concerned that Widnes Vikings did not get into super league. However, Widnes Vikings now have a position—a platform—to build on and hopefully they will be successful in the national league. Then they will be in a position to ensure that they do not return to the horrors of the past, particularly when they went down after their last game in the super league and became insolvent almost immediately. The club has turned that situation around and is now looking forward to the future, from the secure base that my hon. Friend has talked about.

I think that it is difficult for the RFL to put forward a process that it sees as fair and rational but that also withstands challenge. Where there are outstanding questions that my hon. Friend feels the RFL has not answered, I will certainly pursue those questions with Mr. Lewis and Mr. Wood. I must say that there will always be disappointments when we have this type of process. However, for the good of the game, it is important that we move forward.

11.30 am

Sitting suspended.

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Learning Difficulties (NHS Treatment)

[Joan Walley in the Chair]

2.30 pm

Mr. Richard Benyon (Newbury) (Con): 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
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a media and public outcry. In response to the criticism, the then Secretary of State for Health, the right hon. Member for Leicester, West (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.

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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:

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:

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.

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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:

She continued:

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, the right hon. Member for Kingston upon Hull, West and Hessle (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

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

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

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.

2.48 pm

Mr. Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab): I sincerely congratulate the hon. Member for Newbury (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 the Member for Bury, South (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
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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

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