Carers
Tom Clarke Excerpts(11 years, 6 months ago)
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Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
I congratulate the right hon. Member for Sutton and Cheam (Paul Burstow) and his colleagues on initiating this debate, and we have heard some interesting and well-informed speeches.
Some of my colleagues referred—understandably—to legislation, and they have high hopes of the Bill currently going through Parliament. A long time ago I had the privilege of piloting through Parliament the Disabled Persons (Services, Consultation and Representation) Act 1986. It was widely welcomed, but between then and now I discovered that although we can have an Act of Parliament, if it is not fully implemented it makes much less of an impression on people’s problems than we would like.
For example, section 8 of that Act dealt with the duty of local authorities to take the abilities of carers into account. I am sorry to say that I have not seen great enthusiasm among local authorities to implement that provision, although there are some excellent exceptions. When legislation is passed, including the 1986 Act, we all have a responsibility to work with carers organisations, which do a great job, and with carers in our constituencies, to ensure that the wishes of the House are implemented by health authorities, local authorities, the Department for Work and Pensions, and all those who have an influence on the lives of carers.
Together with Lord Brian Rix, I co-chair the all-party group on learning disability, and we are worried about the issue of carers and return to it often. We recognise, as other hon. Members have done, the hard work that carers do every day for the most vulnerable people, and that often their voices are not heard. That is largely because their role in looking after young people—or young people looking after elderly people—is a 24-hour, seven-day-a-week job.
As colleagues have said, caring is a stressful job and people receive few breaks to support what they are doing. In many cases, their commitment to the role is absolutely outstanding, touching and—as colleagues have said—deserving of statutory support that must be fully implemented. This is not my most important point, but carers have drawn my attention to the economics of what is happening, and it is right to mention that according to Carers UK, voluntary acts by carers save the UK public purse £119 billion per year. Do we not have a responsibility to respond? I believe we do.
Let me explain why short breaks are important. Family carers need time off and a break from the constant work of caring. Some families access short break centres or schemes that involve placements with families. Others receive direct payment to purchase their own support—I very much welcome that and was involved in that legislation. As hon. Members have indicated, the current review of welfare has had many effects. My niece and nephew are carers at weekends and look after people with learning disabilities. They stay overnight and therefore need a room for themselves. Under the Government’s legislation, however, and the tax we all deplore—the bedroom tax—we find that it might not be possible for them to continue doing that job. It would also be hard for their clients to find a smaller house that can be adapted in the way their current houses are, quite apart from the problems and upset that such a move would mean.
In 2003, a report by Mencap showed that eight out of 10 carers were at breaking point. Its 2006 report showed that the number had fallen to seven out of 10, but new research indicates that it is now back to eight out of 10. I do not believe that we in Parliament distinguish ourselves if we allow such conditions to continue throughout our country and in individual homes and communities in our constituencies.
The vast majority of carers are not being offered the short breaks they desperately need. One carer stated:
“When you care for someone 24 hours per day and you know it’s going to be for ever, sometimes a short break is your only hope.”
I am sorry to say that we do not often deliver that. Of the few carers who access short breaks, most do not feel that the services are adequate, and seven out of 10 say that they do not receive services that fully meet their family’s needs.
I acknowledge the Government’s recent investment of £1.2 billion in services for people caring for children and adults, but according to Mencap—a well-informed organisation that does work on the ground—there have been no improvements in the well-being of family carers a decade after the issue was first highlighted.
I speak as a former councillor and former president of the Convention of Scottish Local Authorities, but I am disappointed with the role of local councils. Many are failing to meet their duty to assess needs and regularly review care arrangements. Despite the role of local authorities—I do not mention health boards, although they are important too—the startling facts are that six out of 10 carers have never had a carer’s assessment to identify their needs. Worse than that, two out of 10 said that they had been refused an assessment altogether. Mencap says that after 10 years that is simply unacceptable, but I would put it much more strongly: it is a blight on all of us.
The big issue is that families simply do not know how to access those vital short breaks. Three out of 10 family carers have never had a short break and do not know how to access them. Much more must be done. The fundamental failure of some local authorities to provide information about what is available is not acceptable, even from a statutory point of view. Carers are being left in the dark, without support and on their own. Local authority spending is in decline. According to Mencap, spending by local authorities on children’s short break services peaked in 2010-11, but 63% of local authorities reduced this expenditure in 2011-12. In the current economic climate, money must be saved—we understand that—but not on the back of those who have already sacrificed so much for the most vulnerable, including family members and others.
Spending on adult services has also fallen consistently over the past three years, with 54% of local authorities reducing their spending on short breaks for adults in 2012-13 compared with the previous year. We need to listen to what carers take the time to tell us. One carer felt “absolutely devastated” and continued:
“I have sobbed over the way”
the council
“has informed us of their decision to close this wonderful care home.”
I say again that we cannot balance the books on the backs of hard-working people or build a better society by disregarding those who give the most.
So what needs to be done? We need substantial and meaningful action from the Government, local authorities, health bodies and service providers. No family carer should be left to reach breaking point and every family that needs a short break should get one. Each carer should have their needs identified and should not feel that they are alone and without support. Money that is intended for short breaks should be spent on providing short-term breaks. We need services that are person-centred and able to meet the differing care needs of the people who use them. Information about local need for short breaks should be collected more consistently, distributed accordingly and used to inform what services are made available to all the public.
I end with a quote provided by Mencap. This parent said:
“I love my children and that keeps me alive but I’m worn down…When I can’t cope I self-harm as I have to carry on but it’s too much to handle at times.”
Carers’ voices must be heard, their needs must be met and they must never feel defenceless and alone.
Winterbourne View
Tom Clarke Excerpts(12 years ago)
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Norman Lamb
I thank my hon. Friend for that question. He is absolutely right that one thing uncovered, both at Winterbourne View and in the Care Quality Commission survey of similar institutions, was that people were sometimes placed hundreds of miles away from their families. That still continues; that is what we have to address. My hon. Friend asks about what in the proposals will address that and ensure that it does not happen. Every part of the system is signed up through the concordat to changing what has been an unacceptable practice. People will be held to account. I said in my statement that I will chair a programme board throughout this period of change, and we will publish regular updates so we can, in a sense, hold to account every primary care trust or clinical commissioning group and every local authority that fails to change in the way expected.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
I welcome the Minister’s pledge—made twice during his statement—that the Government will go ahead with a review of those “inappropriately placed” and to make it available by 2014. Will there be any element of advocacy during the review, including that endorsed under the Disabled Persons (Services, Consultation and Representation) Act 1986? Finally, do the Government think it possible—if not by this means, by other means—to consider the fairly large number of people inappropriately placed in prison?
Norman Lamb
I thank the right hon. Gentleman for his important questions. First, we want to ensure that advocacy is available to help those families and individuals, ensuring that they are placed in appropriate settings and away from these long-stay institutions that we all find completely unacceptable. I very much agree with him on that, and I find myself in agreement with him again on prisons. We shall come forward next year with some clearer proposals on approaches to diversion—assessing someone’s needs before they end up in prison, diverting them, if at all possible, to much more appropriate settings.
People with Learning Disabilities (Abuse)
Tom Clarke Excerpts(12 years, 3 months ago)
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Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
Thank you, Mr Speaker, for facilitating what I believe is a very important debate. We recently welcomed and entertained the entire world to the Olympic and Paralympic games. By every measureable standard, both events have been hugely successful for Great Britain, so I have asked myself incessantly, how can a nation reach such towering heights of achievement but retain the capacity to engage in crass behaviour that should make us all feel ashamed? The standard of care and protection that we provide to people with learning disabilities is a shameful indictment of our society. There is no defence for the way we ill-treat people with learning disabilities.
Mencap felt compelled to produce a report on the subject, “Out of sight”. I recommend that everyone with an interest in disability or human rights takes the time to read that report, which was co-authored by the Challenging Behaviour Foundation. It calls for an end to the neglect and abuse of people with a learning disability. The opening remarks are defiant: “Enough is enough.” I echo that, and would add: “No more and never again.”
It is nothing short of a national scandal that we have allowed people with learning disabilities to be so marginalised and ill-treated. It should not have happened, and it had better not still be happening. What can we do to avoid it happening again? We need to find the necessary legislative measures that will root out the outrageous behaviour that has been brutally meted out to defenceless, vulnerable people. The abuse is not confined to care homes.
In preparation for this debate, I reflected on the fact that before the summer recess Lord Rix and I, as co-chairs of the all-party learning disability group, launched the start of learning disability week by hosting a special event in Parliament. We sought to highlight the appalling spectacle of how people with a disability are subjected to hate crime in today’s Britain. Our aim was to raise awareness of the offence, and demand positive progress from police forces across the UK in tackling such crime. Research has shown that in today’s Britain as many as nine out of 10 people with a learning disability have been victims of hate crime or subject to bullying. People with a learning disability tend to take longer to learn, and may need support to develop new skills, understand complex information and interact with other people.
Even as we campaigned, more evidence emerged. Winterbourne View hospital was a care unit that provided short-term monitoring of adults with learning disabilities. The BBC’s “Panorama” programme exposed a pattern of institutional abuse perpetrated by several nurses against the most vulnerable patients in the unit.
Jack Lopresti (Filton and Bradley Stoke) (Con)
The Winterbourne View serious case review was published. It strongly criticised South Gloucestershire council for failing to prevent the abuse, given that, in the years leading up to the terrible scenes that we witnessed on “Panorama”, 40 alerts were sent to the council but were not acted on. It is a tragedy and a travesty that they were not acted on sooner; if they had been, we may have been able to prevent a great many of the abuses and atrocities that we saw on the programme. Does the right hon. Gentleman agree that it is imperative that local councils act immediately on information and on issues that are flagged up, as they were in the Winterbourne View case, to ensure that we never see such terrible scenes again?
Mr Clarke
I am pleased that the Member in whose constituency Winterbourne View was—I know he has worked very hard on the issue—has intervened, and I am sure that the House will take careful note of what he has said.
Among the abuses that “Panorama” thought important were the following: patients were forced to have showers while fully clothed; mouthwash was poured into a patient’s eyes; a patient had a bucket of cold water poured over her and was forced to sit outside in the cold; patients were dragged along the floor; a patient was repeatedly punched; and a patient was driven to attempt suicide, and was subsequently mocked. That establishes that vulnerable people were tortured for the amusement of men and women guilty of an inhuman and monstrous series of crimes.
Fiona Mactaggart (Slough) (Lab)
The thing that struck me about the Winterbourne View case was that the individual incidents of torture meted out to the people who were being assessed there—my right hon. Friend is right to describe it as torture—was the same torture as was meted out to residents in a care home on the border of my constituency, which, like Winterbourne View, had many residents whose families were miles and miles away. Is my right hon. Friend, like me, shocked to learn that the Department of Health has no central register of out-of-area placements of people with learning disabilities? Will he, in the course of his remarks, ask the Minister if he will ensure that we have national figures about where people are sent, miles away from their families who want to protect them, into institutions such as Winterbourne View?
Mr Clarke
I am grateful to my hon. Friend. On these matters she shows a great humanitarian understanding, and the very point that she raises was raised with me today by families who came down to London from all over the UK because of this debate. My hon. Friend should know that she has considerable support.
The harrowing examples that are given, and there are many more, of depraved activity that some will inflict on the most vulnerable among us are almost impossible to comprehend. My hon. Friend outlines some of the reasons for that. The courts will deal with those responsible, and that is how it should be. Families of the victims may find solace when the guilty are sentenced, but what of those who seek no vengeance? What of those who take the view that such abuse should never have happened and want to know why it did happen? It is fair to say that we all want to know who was responsible for presiding over this human crisis. How far and how wide does culpability spread?
We cannot erase the evidence of abuse, where and when it happened. We cannot undo the pain, the suffering and humiliating experience endured by people with learning disabilities, and we most certainly cannot leave it to the monolithic bureaucratic machine to ensure that such abuses never occur again. We have completely and unmistakably failed to protect adults in many aspects of their character where we see that their mental capacity is that of a child.
Winterbourne View was operated by a company called Castlebeck Care Ltd, which charged the public purse an average of £3,500 per patient per week for the services that it provided. For that amount of money, a person could stay in the Ritz hotel. For that amount of money, Castlebeck Care Ltd saw a turnover of £3.7 million per year from Winterbourne View. We should know what that money was spent on. We do not know, but the Department of Health should be able to solicit this information and put it into the public domain—again, a point that the parents whom I met today made loudly and clearly. It is only then that a proper, informed judgment can be made of whether the reason for being of those who are providing such services is the pursuit of profit or patient care.
As I said, I met today families who related their own experience. What they told me is that questions and challenges must be addressed to local councils and local health authorities, which have a crucial role. The Improving Health and Lives organisation published a report written by Professor Emerson of Lancaster university, which analysed the Care Quality Commission’s investigations into 150 care providers. Professor Emerson established that only one in seven patients were being supported in an environment that was fully compliant with statutory regulations. He also established that units operated directly by the NHS were more likely to be compliant than those that were out to make a profit. Half the units investigated did not meet those important statutory levels of care.
The Care Quality Commission knew exactly what was going on. Reading through the material, it is impossible not to conclude that its inaction was simply shocking. It presided over the shambolic and chaotic delivery of vital care services. It was appalling when not even lip service was paid to the adherence to statutory regulations or the basic minimum levels of care. Prior to the abuses at Winterbourne View, there were months and months when the commission carried out no inspections at all. Its self-described “light-touch regulation” is part of the reason these abuses occurred. Winterbourne View was inspected only once every two years in the absence of any complaints. Clearly, that is profoundly unacceptable. The commission was also affected by the coalition Government’s civil service recruitment freeze, which resulted in it having fewer inspectors than it clearly required.
Inspectors must increase the pressure in care units that are underperforming. Inspections must occur more regularly and without warning. There must be stiffer penalties for care providers for non-compliance with their statutory obligations. The commission must be relentless when it comes to investigating care providers that cause concern. Of course, as we all know, Winterbourne View was closed down, but how many people know that Castlebeck Care Ltd had two other units closed down as a result of serious concerns about the level of care? The “Panorama” documentary not only exposed Winterbourne View; it laid bare the unbelievable ineptitude of the commission, which was utterly incapable of taking action in all three units before the scandal was exposed. In my view, the new mantra should be, “Inspections will occur anywhere at any time and without prior notice.”
Kerry McCarthy (Bristol East) (Lab)
My right hon. Friend talked about meeting the parents of the patients in the care homes. One of the concerns that have been raised with me is that of elderly parents who care for children with learning disabilities. In particular, my constituent Ivor Needs has a son who is vaccine damaged. Because Winterbourne View is in the vicinity of my constituency, they are really concerned because they have no confidence that the system will be able to look after their child when they are no longer around to do so. Does my right hon. Friend agree that we need some system in place to ensure that people such as Ivor’s son, Matthew, are looked after when their parents are no longer around to do so?
Mr Clarke
My hon. Friend makes an excellent point and, yes, she is correct. That point was raised with me today several times. Over the years I have certainly had many letters from parents who simply ask, “What will happen to our children when we are no longer here?” I am sorry to say that, on this evidence, I worry very much indeed.
There must also be a review to ensure that the current funding system does not incentivise the keeping of patients for long periods at assessment centres. If adults with learning disabilities are better treated and cared for in their own communities, there has to be a support network. Having local care units that are integrated into local treatment centres is a better model than dispatching patients for assessment hundreds of miles away from their friends, families and communities.
We cannot ignore the voices of the 86 leading figures and charities in the care sector who have stated that the current model poses a real risk that similar abuses will occur in future. Enhanced sentences rightly already exist for those found guilty of racism and homophobia. To begin the process of moving to local integrated units, the Government should begin closing large assessment centres and set a time scale. Local commissioners should develop local services that meet the care requirements of those with learning disabilities.
Sadly, those issues were identified long before the scandal emerged. The late Professor Mansell’s report “Services for People with Learning Disabilities and Challenging Behaviour or Mental Health Needs” was clear in its analysis and prescribed remedy.
The current care model, and the regulation of it, led to these abuses. It is the system that we are challenging. Simon spent 15 months at Winterbourne View and was hit, pushed, abused and tormented. When he cried for help, we collectively let him down. Then there is the experience of James, a child with a learning disability and autism who suffered abuse and neglect. When James needed help, we collectively let him down. Chrissy suffers from various conditions such as autism and epilepsy as well as from challenging behaviour. When Chrissy needed help, we collectively let her down. There is also Victoria, whose father died before she was nine years old. She suffered a lot of family stress. When Victoria needed care, we collectively let her down. Emmanuel, only six months out of school, was sent away to a unit far away from his family, where he remained for 18 months. All those people, and many more, have been collectively let down.
The scandal, highlighted so bravely by Terry Bryan, is predicated on the notion that if people want to abuse someone, they will, under the present system. The status quo is no longer a tenable option. I trust that the Minister will recognise that we need Government intervention to tackle and cure the cause of abuse. We never want a repeat of Winterbourne View or any similar home in today’s or tomorrow’s Britain. We want public support for our efforts in caring for and protecting people with learning disabilities. We must never collectively let them down again.
The Minister of State, Department of Health (Paul Burstow)
I congratulate the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke) on securing this important debate and thank him for setting out so powerfully the case for action, not just by the Government but by all those in the system. He acknowledged that the responsibility for safeguarding the vulnerable in our society sits with us all. We should all be vigilant and we must be willing to blow the whistle and to stand up and be counted.
The Government agree with the right hon. Gentleman that, like anyone else, people with learning disabilities have the right to lead their lives free from fear, harassment, harm and abuse. People with learning disabilities should be treated with dignity and respect.
This is the first parliamentary opportunity to refer to a sentiment shared across the House tonight. I should like to pay brief tribute to the work of Lord Morris of Manchester, Alf Morris. Opposition Members will know him from his service as a member of the Labour parliamentary party for many years. He was an undoubted, doughty challenger and campaigner for the rights of disabled people, regardless of their disability. He will be missed, having departed this world during the recess. He was the first Minister with responsibility for disabled people and the pioneer of disability legislation in this country, along with Lord Jack Ashley, who is also sadly missed. I suspect that they are both looking down on this debate and regretting the fact that we are still debating abuse of this sort. I want to put on record my tribute to both of them.
Mr Tom Clarke
I am very respectful of what the Minister has said about two great men, Lord Ashley and Alf Morris. The last discussion I had with Alf Morris was about this very issue.
Paul Burstow
I am sure that Lord Morris would have been following these matters very closely and with great interest, and I am grateful to the right hon. Gentleman for raising them.
The events at Winterbourne View that the right hon. Gentleman so clearly described were horrifying and depressing. They were horrifying because they so sharply defined everything that is rotten and can go wrong in closed institutions where people are out of sight. What took place at Winterbourne View was criminal. A culture of abuse was allowed to fester and grow undetected and unchecked. The serious case review by Margaret Flynn sets out in great detail the failings of Castlebeck Care Ltd, and it makes grim reading. The right hon. Gentleman reported many of its findings to the House. The events at Winterbourne View were depressing because, as the report by Mencap and the Challenging Behaviour Foundation, “Out of Sight”, reminds us, it is not the first time that closed institutions have let down people with learning disabilities. The right hon. Gentleman highlighted the personal stories that are contained in that important report, and those stories are very telling, with families feeling let down by the system and the sense that the best interests of the individual are not being served and that their views, wishes and feelings were not sought, and if they were sought were not understood.
In October this year, the court will hand down sentences to the 11 members of staff who have pleaded guilty to maltreatment of patients at Winterbourne View hospital. There are no excuses and no mitigating circumstances. What happened was degrading, dehumanising and despicable. I understand that the Crown Prosecution Service will ask the judge to take into account the fact that these are disability hate crimes when determining the sentence of the defendants.
NHS (Public Satisfaction)
Tom Clarke Excerpts(13 years, 8 months ago)
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Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
I congratulate my hon. Friend the Member for Leyton and Wanstead (John Cryer) on introducing a debate on such an important subject, and on the balanced way in which he opened it. I should declare that I am the co-chair with Lord Rix of the all-party group on learning disability. It is on that subject that I wish to speak in the five or six minutes that I hope to take.
I would like to make it clear that although I shall make several criticisms of aspects of the national health service, I stand second to no one in my regard for it or, as a GMB member, in my respect for those who work for the NHS, including the trade unions. They are helping to create their big society—a meaningful society—and making the NHS something of which we are all very proud.
The learning disability group has been helped considerably by Mencap. Today, I shall rely on its research and the many conclusions that it has reached. It published “Death by indifference” in 2007. Indeed, I had a debate in this Hall when the Labour Government were in power, so I hope that I will not be regarded as party political.
The report highlighted the tragic consequences of deep-rooted institutional discrimination in the NHS against people with a learning disability. In many cases, NHS staff did not know about the specific needs of people with a learning disability and did not take the time to understand and meet those needs. People with a learning disability are some of the most vulnerable members of society and have some of the most profound health care needs. Although the Government investigated the issue in the independent inquiry led by Sir Jonathan Michael, in a poll conducted on behalf of Mencap, almost one half of doctors, or 47%, and one third of nurses, or 37%, said that people with a learning disability received a poorer standard of health care than the rest of the population. In the same poll, 39% of doctors and 34% of nurses went as far as saying that people with a learning disability were discriminated against in the NHS.
I want to deal with the NHS complaints system. The unnecessary deaths—sadly, that has been the case—of people with a learning disability do nothing to increase public confidence in the ability of the NHS to give effective care to those vulnerable members of society who are most in need of it. However, that is compounded by the malfunctioning NHS complaints system which, as a result of being time-consuming, defensive and too heavily weighted in favour of health professionals, refuses to learn from previous mistakes in order to drive up standards and increase public confidence.
Following its “Death by indifference” report, Mencap has helped a number of families through the complaints system. It is revealing that not a single family has ever said they felt that justice had been achieved through the local complaints procedure. That is due to the overwhelming desire of NHS trusts to stand up for their staff, the potential conflicts of interest when NHS staff investigate complaints made about people working in the same trust, and a fundamental lack of understanding about what learning disability is.
The same issues are evident when the complaints are escalated to the parliamentary and health service ombudsman. NHS trusts have disproportionate access to support, in comparison with the families going through the complaints process. In addition, the time scales given for complaints to be dealt with are usually longer than expected and only succeed in drawing out a family’s grief.
I would like to conclude with a few comments on this theme. In light of tragic cases of misunderstanding in administering health care to vulnerable people, public confidence in the NHS understandably has been undermined. The defensive nature of the NHS complaints system, however, means that the NHS does not learn valuable lessons which could help prevent unnecessary deaths from occurring in the future. Public and patient confidence in the NHS will be improved only with greater accountability and transparency so that people can see that efforts are being made to drive up standards. The complaints process is central to that and therefore requires a fundamental overhaul to make it a more impartial and reflective system. That is necessary to drive up health outcomes across the NHS and to increase public confidence in it.
Oral Answers to Questions
Tom Clarke Excerpts(14 years, 1 month ago)
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Paul Burstow
I am grateful to my hon. Friend for that question, which underscores the legacy that the Government have been left in terms of the paucity of these services as they are now and why we need to work closely with colleagues in the Ministry of Justice, as indeed we are doing, to ensure that we provide good quality mental health support for offenders, both in prison and when they leave it.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
Can the Minister assure us that he will encourage his departmental colleagues to ensure that, despite the influence of the comprehensive spending review, the confidential inquiry and the learning disabilities public health observatory will go beyond March and until the work is concluded?
Paul Burstow
The right hon. Gentleman does a lot of work in the area of learning disability. Indeed, we had a good debate in Westminster Hall earlier this year on this matter, in which I indicated the Government’s support for those observatories. We believe they play a very important role in our understanding of the issues.
Contaminated Blood and Blood Products
Tom Clarke Excerpts(14 years, 2 months ago)
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Madam Deputy Speaker
Order. May I remind hon. Members that Mr Speaker has set a time limit on speeches of five minutes? That does not mean that every Member has to take all their five minutes. Some 24 or more Members wish to participate in this important debate, so I ask you all to help your colleagues out by making your points succinctly, so that we can get in as many speakers as possible.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
On a point of order, Madam Deputy Speaker. Will you confirm that if Members take interventions during those five minutes, they will be given penalty time?
Madam Deputy Speaker
I can confirm that the normal procedure for interventions and compensation time apply to those five minutes. I hope that that is clear.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
I have a great regard for the right hon. Member for Charnwood (Mr Dorrell), but if there had been an alternative to the motion tabled by my hon. Friend the Member for Coventry North West (Mr Robinson), that would have been helpful to us in the debate.
Mr Geoffrey Robinson
On that point, if the Government intend to do what they have outlined in their written statement, why did they not table an amendment to that effect? Why did they squirrel the information away in a statement in the Library? The right hon. Member for Charnwood (Mr Dorrell) is long enough in the tooth to know that they have not deliberately done it like this, but had they tabled such an amendment, incorporating their statement, we would have been very inclined to vote for it—
Madam Deputy Speaker
Order. Interventions must be interventions; the hon. Gentleman must not make another speech.
Mr Clarke
I feel that there ought to be more humility on both sides of the House as we debate this matter, and I hope that I shall be able to exercise some myself. This issue has not been properly dealt with by Governments of all shades for a quarter of a century. It is amazing, but this is our first debate on the subject in a quarter of a century. I welcome the debate, and as the motion tabled by my hon. Friend the Member for Coventry North West is the only practical proposal before the House, I shall take pride in voting for it. I have held a number of responsibilities myself, including that of shadow spokesperson on disability. The hon. Member for Bristol North West (Charlotte Leslie) asked earlier what had been done so far, and the answer is: not enough.
Mr Andrew Turner (Isle of Wight) (Con)
Does the right hon. Gentleman recognise that this Government came into office only about five months ago, and that they are trying to get a lot of things sorted out? I am not blaming the right hon. Gentleman, but I am trying to explain what is happening. To wait for two or three months longer for this important decision is a small price to pay, and I do not understand why he and the hon. Member for Coventry North West are worried about waiting for three months, because that is the difference between the proposal in the motion and what the Government are proposing.
Mr Clarke
Indeed, a lot of people in the Haemophilia Society and other supporters of my hon. Friend the Member for Coventry North West are genuinely looking forward to what the Under-Secretary of State for Health, the hon. Member for Guildford (Anne Milton) is going to offer them before Christmas.
That said, I want to go on to talk about one of my constituents, with whom I had a discussion yesterday. The House has to accept its responsibilities on these matters, including its responsibilities for delay after delay, even though evidence has been available. We have not given a response to the people who are suffering very gravely. We are talking about a number of people dying, families bereft of their members and the impact of not having acted previously. There is the issue of not having proper regard to the blood we are using. Then there is the use of American blood from we know not where, and now the decision taken not to use UK blood because we think there might be an element leading to new variant CJD. Frankly, a degree of incompetence is evident, which people interested in our debate will find hugely unacceptable.
Ms Diane Abbott (Hackney North and Stoke Newington) (Lab)
My right hon. Friend talked about American blood from we know not where. The tragedy is that we do know where much of it came from. It was from paid donors, many of whom were prisoners and drug addicts, leading to consequences about which we all now know.
Mr Clarke
I am grateful for my hon. Friend’s intervention.
The kind of information that we have—and we have had interventions year after year—in terms of giving us the facts and the evidence, quite apart from what our constituents are drawing to our attention, was embraced in Lord Archer’s report, to which the motion refers. That report, which I very much welcome, led to Lord Morris of Manchester—both our noble Friends have done a commendable job in bringing these issues to our attention—attempting to deal with the problem through legislation. A Bill came to this House at the beginning of this year, but where did it go? Nowhere.
That brings me to what this issue means for our constituents. I spoke yesterday to a man in my constituency—I will not name him—who is now 36. He described the bizarre experiences of his case. He talked about the secrecy surrounding these matters. The excellent Yorkhill hospital in Glasgow has a very good reputation, but a large number of papers pertaining to it have simply gone missing. My constituent talked about the stigma of having hepatitis C; he had been told for many years that he did not have hepatitis A or B, and was lucky not to have AIDS. His doctor withheld information on his particular case for more than a year. He told me only yesterday what the real problems were—for example, the difficulty of getting life insurance and a mortgage for himself and his partner.
Mr Clarke
I am sorry, I do not have time.
My constituent also talked about the increased premium he faced in getting travel insurance. People are clearly being penalised again and again because they had the misfortune to find themselves with this condition of haemophilia and then found, as they approached the national health service, that their condition was made unacceptably worse.
I want to thank the organisations that have helped. With particular reference to Scotland, I want to thank Mr Philip Nolan, who spent several hours with my constituent and me, and who, it seems to me, has been in London almost every week for years, preaching to us the necessity to act.
My constituent referred yesterday to the position in Northern Ireland. I do not want to open up yet another party political debate, but the truth of the matter is that even with its economic difficulties, Ireland—if I said Northern Ireland yesterday, I should have said Ireland—has not abandoned its scheme.
Mr Clarke
I am sorry, but I do not have enough time to give way.
If the scheme means getting earlier acceptance on to the waiting list and getting problems recognised, and if our constituents should not be doubly penalised for something that is not their fault, I am with my constituent in saying that justice delayed is justice denied—and we have denied justice for far too long. Today provides us with an opportunity to put that right.
Valerie Vaz (Walsall South) (Lab)
It is always a pleasure to follow the hon. Member for Dartford (Gareth Johnson).
My hon. Friend the Member for Liverpool, Walton (Steve Rotheram) paid tribute to the campaigners by wearing a black tie. I am in rather a bright outfit for this occasion because of my own tribute to the breast cancer care campaign.
I congratulate my hon. Friend the Member for Coventry North West (Mr Robinson) on initiating this debate and I support his motion. In the words of Lord Winston, this is the “worst treatment disaster” in the history of the UK. Not only is it a human tragedy, but it is grossly unjust. My constituent Valerie Moule is widowed because, through no fault of her own or of her husband, the blood that he was given as a haemophiliac was contaminated by HIV. Ivan Moule was one of the first people to die from contaminated blood, in 1989. This is an unimaginable injustice. Ivan Moule innocently received blood as a treatment without knowing that it was killing him.
Injustice in any part of life has to be corrected and someone has to take responsibility when things go wrong—
Mr Tom Clarke
My hon. Friend has outlined some of the big issues that we are debating. Does she agree that one of the most unacceptable aspects of this situation is how widows have been treated?
Mr Robinson
I am very grateful to my hon. Friend for that intervention. Perhaps the Minister would like to say whether that is correct. Perhaps she does not know. The debate is degenerating into the to and fro of Opposition against Government interchanges. Let me assure the Health Secretary and the Minister that no one who has taken part in the debate really wants that.
The simple fact of why we are proposing this motion and resisting the Government amendment is that we are pressing for a recognition that a gross injustice has taken place and that it must be put right. That will involve high levels of compensation. We beg the Government not to believe the figures that are automatically produced to exaggerate the situation.
Mr Tom Clarke
Does my hon. Friend recall that when many of us were fighting for compensation for retired miners, we were given exactly the same arguments against—for 18 years? The question today is whether we are prepared to wait that long for a solution to this problem.
People with Learning Disabilities (NHS Treatment)
Tom Clarke Excerpts(14 years, 5 months ago)
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Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
As always, it is an enormous pleasure to debate under your chairmanship, Mr Hood. I welcome you this morning. I also have great pleasure in welcoming the Minister. He knows that he has a very exciting portfolio, and if our extremely crowded meeting of the all-party group on learning disability yesterday is an indication—we understood that the Minister could not attend, for very good reasons—there is great public interest even in this debate. I welcome the Minister to his post.
It is a great privilege to open this debate on the hugely important issue of the treatment of people with learning disabilities in the national health service. I am well aware that the NHS in Scotland is devolved, following decisions of this House, but I declare two interests. I am a co-chair, with Lord Rix, of the all-party group, and I represent taxpayers in my constituency, who want to see best practice throughout the UK, particularly because many of the problems that will be discussed today are replicated in Scotland.
It is four years since the Disability Rights Commission published its report, “Equal Treatment: Closing the Gap”, on physical health inequalities experienced by people with learning disabilities and mental health problems. It is three years since Mencap published its “Death by indifference” report, highlighting six different cases in which people with learning disabilities died unnecessarily in the NHS. Those reports helped to bring the treatment of people with learning disabilities to the fore and led to an independent inquiry chaired by Sir Jonathan Michael in 2008. In March 2009, the health service ombudsman published a report on the six deaths highlighted in “Death by indifference” and found failures of process at the heart of service provision in the NHS.
I hope that today’s debate gives hon. Members the opportunity to question the Minister on progress made in the past two to three years and gives the new Government the opportunity to show their commitment to equality of health care provision for people with learning disabilities.
It is important to emphasise that the debate is not an excuse to attack the NHS. The national health service is an institution that is treasured and cherished throughout the country and of which hon. Members in all parts of the House are rightly proud. I have seen in my constituency and in constituencies throughout Britain the hard work and dedication of health care professionals—nurses, doctors, cleaners, ancillary workers and others—who are willing and able to go the extra mile for patients and are determined to help and improve the lives of people who need the support of the NHS.
A true friend of the NHS does not simply praise it unquestioningly, however. I believe that Aneurin Bevan, who died 50 years ago last week, would be delighted to see Government, politicians and voluntary organisations coming together to work with the NHS to ensure that it constantly improves its health care provision for the most vulnerable people and delivers its services with ever greater understanding and consideration. We should not forget that although the right of people with learning disabilities to experience equality in health care provision is a profoundly moral one, it is also a legal requirement under the Disability Discrimination Act 2005, the Human Rights Act 1998 and the Mental Capacity Act 2005.
It is important for us to highlight the many problems identified in some of the excellent work carried out in recent years. Sir Bert Massie, then chairman of the Disability Rights Commission, wrote in the foreword to the commission’s “Closing the Gap” report that
“people with learning disabilities…are more likely to experience major illnesses, to develop them younger and die of them sooner than other citizens. They are less likely to get some of the evidence-based treatments and checks they need, and they face real barriers in accessing services…we sometimes encountered a complacent attitude that these excluded groups ‘just do’ die younger or ‘just won’t’ look after their health or attend appointments.”
That was a damning indictment of what many people with learning disabilities experienced when they accessed health care services. Not only were people with learning disabilities more likely to experience health problems—that inequality is due to a wide range of physical, social and cultural factors—but the treatment that they received was of a lower standard.
The same report also found that people with learning disabilities were less likely to receive checks, such as crucial screening for breast cancer. There were problems with what is called diagnostic overshadowing, whereby physical illness is viewed as part of a learning disability and therefore ignored or sidelined. Many services were found not to be making reasonable adjustments to ensure that health care information was accessible to people with a learning disability.
If the report by the Disability Rights Commission was eye-opening, Mencap’s “Death by indifference” report the following year was simply shocking. It highlighted the institutional discrimination that can exist at the heart of the NHS. One family reported that when they took their daughter into hospital for treatment, they were told, “If she had been a normal young woman, we would not hesitate to treat her.”
Due to time constraints, I shall highlight just one of the tragic cases included in the report. Martin was 43 years old when he died in December 2005. He had a severe learning disability and no speech. After suffering a stroke, he entered hospital, where he contracted pneumonia. He could not swallow, so was put on a drip, which he was unable to tolerate and sometimes pulled out. A speech and language specialist visited Martin and recorded that alternative feeding methods should be found, but Martin was now entering his third week in hospital, his veins had collapsed and the doctors could no longer get the glucose liquid from his drip into his body. By the time it was decided that a feeding tube needed to be inserted into his stomach, Martin had been without nutrition for 21 days. He could not undergo the operation to insert the feeding tube, and five days later he died.
The hospital’s internal investigation concluded that there had been a complete breakdown of communication between the doctor and the nurses. The ombudsman went further, finding that Martin’s death was avoidable and that he had been treated unfavourably because of his disability. Martin starved to death in an NHS ward because he did not receive the quality of care that he deserved and because he was failed as a result of his disability. That was certainly a shocking case, but Martin’s death was more than a mere statistic. It was a human life—a life that could have been saved if he had been treated properly.
As a judicial review has been granted into an aspect of the ombudsman’s findings, I will not comment in detail on the wider aspects. However, the “Death by indifference” report was possible only because of the bravery of the families who came forward to highlight the tragic and preventable loss of life that had occurred. Their bravery allowed people to see the human aspect of disability discrimination in health care and led to the creation of an independent inquiry into access to health care for people with learning disabilities, which published its conclusions in July 2008.
Sir Jonathan Michael’s findings supported what people with learning disabilities and their families and carers have long said, and the points that I am about to make were overwhelmingly endorsed again and again at the all-party group’s annual general meeting yesterday. People with learning disabilities find it harder to access health care services not directly related to their disability, and adjustments are not always made to allow for communication problems. Parents and carers often struggle to be heard, and there is limited knowledge among health service staff about learning disabilities.
I was pleased by the response of the previous Government, who set up the independent inquiry and unreservedly accepted its findings and recommendations. A public health observatory and a confidential inquiry into the premature deaths of people with learning disabilities have been established, and progress has been made on annual health checks, particularly in certain areas. However, more needs to be done to ensure more uniform roll-out, and questions remain about funding.
Real progress was made under the previous Government’s 2009 “Valuing People Now” strategy, and I would like to hear from the Minister how the new coalition Government propose to maintain that momentum, how they will ensure that reasonable adjustments are made and how they will continue to raise awareness among health care professionals. I would also like to hear how they will move towards providing greater training in the health service—an issue that was raised again and again at yesterday afternoon’s meeting—and ensure that data collection, information sharing and service co-ordination are enhanced.
As we know, the problems in the NHS are not self-contained. Discrimination, lack of awareness and a failure to understand the needs of people with learning disabilities do not exist simply in the NHS or the public sector; such attitudes percolate through all aspects of society, from education to employment to health care. If the Government are seriously committed to removing health care inequalities for people with learning disabilities, they need to do so in a wider social framework, as the “Valuing People Now” strategy clearly recognised.
I would therefore be interested to hear the Minister respond to the recent report by Professor Jim Mansell, who, incidentally, made an excellent contribution to yesterday’s meeting. His report, “Raising our sights”, deals with people with profound intellectual and multiple disabilities. It details the challenges, prejudice, discrimination and low expectations that many people with such profound disabilities face. It also deals with, and makes recommendations on, health care for people with profound intellectual and multiple disabilities, encouraging NHS bodies and NHS trusts to think about how adequate health provision is and to reflect again and again on how they deliver such vital services. How do the Government plan to respond to this important report? Will its extremely relevant and poignant recommendations be used as a framework for future policy making? It would be useful if the Minister could make the report available in paper form for those who do not access the internet and if the excellent accompanying DVD, which we saw yesterday, could be added to the website.
Although progress has been made, there is still plenty to do. That was highlighted recently in a poll of more than 1,000 health professionals carried out by ICM and commissioned by Mencap. The survey found that almost half of all doctors and a third of nurses said that people with a learning disability receive a poorer standard of health care than the rest of the population. Four out of 10 doctors and a third of nurses said that people with a learning disability are discriminated against in the NHS. The survey also found that a third of health care professionals have not been trained in how to make reasonable adjustments for a patient with a learning disability.
The Government need to make sure that there are accessible and open communication channels between professionals and those with learning disabilities, who rightly demand a higher standard of treatment. More than 80% of people with a learning disability have a severe communication disability, and that, alongside the prejudices and stereotypes that I have discussed, can often be at the heart of identified failures in the NHS. How will the Government continue to expand opportunities for specialist support so that two-way communication between people with learning disabilities and NHS workers can improve? I ask the Government to ensure that people with learning disabilities are guaranteed access to special communication provision and that NHS staff have appropriate communication skills.
It is vital to recognise and adapt to the challenges specific to people with a learning disability. I have recently had the pleasure of working alongside the charities SeeAbility and the Royal National Institute of Blind People, which have highlighted the prevalence of sight problems among people with a learning disability. In fact, more than a third of people with a learning disability have such a problem, and many do not realise it. Such problems can lead to behavioural change, to the undermining of quality of life and often to increased dependency. It cannot be acceptable that people with a learning disability are also least likely to get the right help and support with eye care.
In January, the all-party group co-hosted a listening event at which people with learning disabilities spoke to MPs, Members of the other House and other stakeholders about the sight problems that they had had and the lack of support available to them. As we listened to those articulate people, it became clear that more information needs to be available and that eye care professionals need to be supported so that they can provide accessible and effective services. Eye care is one small but important part of health care provision, but it became clear, as we listened, that all people with learning disabilities want is accessible and understandable services that are adaptable to their particular needs. That is not too much to ask, I suggest, in the modern world.
The commitment to eradicating health care inequality in the NHS is shared among Members on both sides of the House, our partners in the voluntary sector and health care professionals. There are problems of discrimination, lack of understanding, communication failure, assumptions about quality of life, and inflexible service provision, which have begun to be tackled. That process needs to be continued by the new Government. I hope that they support Mencap’s new initiative, the “Getting it right” campaign, which calls on health trusts to commit themselves to a charter setting out the steps necessary to ensure equality of health care in the NHS for people with a learning disability.
The charter makes reference to many of the points that are being debated this morning, including annual health checks, training, awareness, support for families and open channels of communication. Equality in treatment will be fully realised only once genuine equality for people with disabilities is achieved across society. However, the steps that have been taken to make tangible gains must continue, and must not fall by the wayside because of spending cuts or NHS reform, or for any other reason. Health care professionals need to be fully trained; specialist communications must be accessible; and services must be flexible in relation to the needs of all people with a learning disability.
The NHS succeeds because it is there for the most vulnerable. Let us hope that, with the legislative programme that has already been started, which hopefully is to continue under the current Government, we can prevent ill-treatment, discrimination and even avoidable death in that great national institution—we owe it to people with disabilities and to the vast majority of NHS staff, whose sterling commitment I again acknowledge.
Mr Burstow
The hon. Lady must have a copy of my speech in front of her, because the answer to that question is in the next paragraph. She is absolutely right. In executing the change that the White Paper sets out, which means removing the sense of central dictation and direction that we have seen in the NHS for the last 13 years, ending that sense of command and control and making the system one that is about delivering outcomes and one that is facing the patient and working alongside them to deliver those outcomes is an important transformation. Therefore we need to ensure that, in the transition planning that is now well under way for the change that will take place during the next two to three years, the institutional knowledge and learning in the existing system properly migrate to the new system, and that best practice is firmly embedded in the front-line services. Those services will remain as they are now, but they will receive more support and investment to do even better.
Mr Tom Clarke
I welcome both the Minister’s tone and his approach to the all-party group. When he considers a number of these issues, I wonder if he feels, as I do, that the importance of advocacy is underlined? Furthermore, does he believe that advocacy will become a central part of the Government’s approach to these matters?
Mr Burstow
I am very grateful to the right hon. Gentleman for his intervention and his question. He raises a point that I will move on to shortly, but I certainly see advocacy as being very important in this area. Looking forward, we will need to ensure that we reflect what we are learning from the work that is going on at the moment in the new commissioning landscape and in the new frameworks for accountability at a local level.
Both the right hon. Gentleman and the shadow Minister have referred to annual health checks, so let us look at that issue. It is quite encouraging that many more people with learning disabilities are now receiving an annual health check from their GP. Last year, just over one in five people with learning disabilities received an annual health check and the latest figures show that two in five people with learning disabilities have received their annual health check within the last 12 months. However, that is clearly not good enough, as it means that three in five people with learning disabilities still do not receive an annual check. As a Government, we are determined to push that process forward to ensure that the training and development that has taken place delivers in that regard.
I have heard many stories about how those health checks have identified, for example, cataracts or cases of diabetes. Furthermore, as has already been said in this debate, if we put ourselves in the position of a person having such a health condition but being unable to communicate the symptoms, we can begin to understand the difference that these health checks can make. I am therefore certainly keen to see annual health checks continue for people with learning disabilities, and we are looking at the most cost-effective way of ensuring that.
Reference was also made to the training of staff in relation to carrying out health checks. Undertaking training is certainly part of the requirement for all the GP practices that are delivering the annual health checks for people with learning disabilities. That training is about raising awareness of people with learning disabilities and their families, and particularly about ensuring that communication issues are understood, that advocacy is provided and that there is also liaison with staff in the acute sector. So there are a number of aspects about training and I will say more about that shortly.
The right hon. Gentleman referred to the training, as did the hon. Member for Kingswood. Reference was made to the recent Mencap poll, which makes disturbing reading as it shows the number of staff who have not had training to help people to make reasonable adjustments to different situations.
The shadow Minister talked about the need to look at people in the round, so that we do not only look at either their learning disability or their physical needs but at both elements. In that way, we will not allow diagnostic overshadowing to take place. That issue must be properly addressed in training. Therefore I wanted to ensure that right hon. and hon. Members were aware that the Council for Health Regulatory Excellence is working with professional bodies to support better training and to improve professional standards. That relates to a point that the hon. Member for Kingswood made about the need for professional ownership of that training, so that it is not just something that is imposed from the top but is seen by professionals as an essential way of learning to do their job better.
As a Government, we are working with the council to reach not only doctors and nurses but the full range of health care professionals. That is clearly important when it comes to meeting the often complex needs of people with learning disabilities. For example, speech and language therapists have a key role in tackling feeding issues of the type that the right hon. Member for Coatbridge, Chryston and Bellshill talked about. However, he referred to a case that I fear I cannot talk about any further, because it is before the courts. Occupational therapists are also important in helping people to develop the skills that they need to live independently, so I am pleased that all the regulatory bodies are reporting progress on that work and I will certainly keep in touch with them to ensure that that progress is maintained. I also want to ensure that that learning is embedded as we move towards delivering the vision that is set out in the Government’s health White Paper published on Monday.
Meanwhile, at a primary care level staff in all GP practices that are delivering annual health checks now have the appropriate training. The Royal College of General Practitioners is due to publish additional training materials for all GPs this summer, which are about getting health checks right for people with learning disabilities. I hope that that reassures right hon. and hon. Members that the Government are not about to shelve the issue of training but are determined to see training programmes develop.