Health and Social Care

Madeleine Moon Excerpts

Monday 13th May 2013 Commons Chamber

[Paul Burstow]

I am grateful to the right hon. Gentleman for intervening. If he looks at last year’s Government impact assessment of the draft Bill, he will see that it gave a commitment to directing an additional £150 million specifically towards the rights of carers. The White Paper also gave a commitment to an additional £300 million over this and next year to support the system during this spending review period. I will address the funding questions for the future in a moment.

The right hon. Gentleman was a little harsh in his comments on the Bill laying the foundations for the implementation of the Dilnot cap on care costs. To understand this properly, we need to consider the relationship between the Government’s generous change to the means test—the threshold is being raised to £118,000—and the cap itself. Of course, we do not want people to reach the cap. We want steps to be taken to enable them to avoid having to pay catastrophic lifetime costs in the first place. The biggest gain of implementing the Dilnot proposals is a public health gain. It is about having conversations about care needs earlier, so that steps can be taken to minimise the risks of heavy-end care costs later in life. The Bill also commits the Government to national eligibility for the first time, which is hugely welcome.

I want to touch on three issues in the time remaining. First, some serious questions remain about how the Bill, which we will scrutinise over the coming months, will deal with the issue of young carers, which has already been raised. It is possible that young carers will fall into a gap between the Children and Families Bill, which is currently before the House, and the Care Bill, which will soon be before us. The Care Bill needs to address situations in which an adult does not qualify for local authority support and their children end up taking on caring responsibilities that become overly burdensome and inappropriate. In such circumstances the adult should be entitled to some sort of service so that their child does not lose their childhood to caring responsibilities. That requires action in the adult-related Care Bill; it should not be pushed away to be dealt with in the Children and Families Bill.

The second issue is poor commissioning practice, which was highlighted by an Equality and Human Rights Commission report on home care more than 18 months ago. It identified that contracting by the minute, or time-and-task contracting of home care, denigrated people and that they were being dealt with in an undignified way as a consequence of how services were being commissioned. Just a few weeks ago the Low Pay Commission’s most recent report highlighted, yet again, too many circumstances in which home care is being delivered by people who are paid below the national minimum wage. That is unacceptable and the Government need to deal with it.

[Mrs Madeleine Moon (Bridgend) (Lab)]

In a previous life I was a contracting officer for a local authority, and I contracted and commissioned care from the private sector. We always faced the same problem: the local authority tried to get more care for less money. That meant that contractors were paid less for their care workers, who were constantly not paid for travel time. How do we break this vicious cycle if we do not accept that we have to fund local authorities properly to make possible the provision of quality care?

[Paul Burstow]

I thank the hon. Lady for here intervention and will come to the issue of funding in a moment. The Joint Committee on the draft Care and Support Bill, which I chaired, was unanimous in its report’s recommendation that Government legislation must address the need for actual costs to be a relevant factor in determining fees for care. That is not covered adequately in the Care Bill at present and I am sure that hon. Members will take that into consideration. The Association of Directors of Adult Social Services said in its most recent survey that it was already concerned that some providers were suffering financially and that the situation would get considerably worse over the next two years. Will the Minister consider allowing the Care Quality Commission to inspect councils again when its inspections of local providers reveal that poor commissioning practices are at the heart of its concerns about those providers? The CQC has created a space for local authorities to self-improve and collaborate with one another. However, when its inspections reveal provider stress because of that, it should be able to inspect the council.

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[Barbara Keeley]

I am absolutely bound to agree with that point, and I will come on to it shortly.

As has been said, we cannot separate the funding of social care from the law on social care. We need to take on board the fact that the Bill will not help those who are struggling without the social care support they need, either today or in the months and years ahead.

The Bill builds on the recommendations of the Law Commission’s review on social care and carers, but we should remember that until the Care Bill, carers had been given rights only through measures in private Members’ Bills: the Carers (Recognition and Services) Act 1995, the Carers and Disabled Children Act 2000 and the Carers (Equal Opportunities) Act 2004. We should pay tribute to the late Malcolm Wicks, Tom Pendry and my hon. Friend the Member for Aberavon (Dr Francis) for their work on that early legislation to give rights to carers.

When I came to Parliament in 2005, I raised the issue for the first time that GPs and other health professionals needed to identify carers within their practice population. GPs are best placed to help carers at the start of caring, which is when they need that help and advice. It is the GP who deals with the patient with dementia, the patient recovering after a stroke, or the patient with cancer. The GP and primary health care team are, after those life-changing events, well placed to see if there is an unpaid family carer. It is then a simple step for them and their teams to take time to check the health of the carer and to refer them to sources of advice and support. Caring can have a serious impact on the health of carers. In a recent survey of 3,000 carers, Carers UK found that 84% said that caring was having a negative impact on their own health—up from 74% in 2011-12.

I have introduced three private Members’ Bills on the identification of carers, and in September I introduced the Social Care (Local Sufficiency) and Identification of Carers Bill. The Bill had good support in the House. My hon. Friend the Member for City of Durham (Roberta Blackman-Woods) and 11 MPs from across most parties were supporters. We also had support from 27 national charities, the National Union of Students, the business group Employers for Carers and 2,000 individual carers. However, the Government did not support the Bill. In the debate, the Minister of State, Department of Health, who is responsible for care services, stressed that it was best to get everything codified in one place so that one piece of legislation addressed all issues of care and support. However, the Care Bill does not help with the identification of carers; it puts the duty of assessment on to local authorities. It is questionable whether cash-strapped local authorities will be able to assess the needs of large numbers of carers in any way that makes it a worthwhile exercise for those carers. If the Minister wants to look at the Joint Committee’s web forum on the draft Care and Support Bill, he will see that many of those who commented said that local authority assessments are of little practical help in their caring role.

[Mrs Moon]

Last week, I had a telephone call from a young man who is caring for his father. His father has the same condition as my husband, and he contacted me because of the debate we had on dementia. He told me that he had phoned his social services department twice and the psychiatric nurse twice to ask for help and support. He did not know where to turn. Is this not increasingly the problem? There is just no money: no money to provide the assessments and no money to provide the care if those assessments are carried out.

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[Mrs Anne McGuire (Stirling) (Lab)]

It is a pleasure to speak in this debate and to follow the hon. Member for Aldershot (Sir Gerald Howarth), although obviously I would not necessarily agree with all his comments.

I was not going to say anything about immigration, but sometimes we need to look to ourselves when we talk about that subject. I suspect that there is not one individual here who has not had at one point in their background an immigrant who came to the United Kingdom. Those who talk about the “native British” need to reflect on the fact that Britain has always had immigrants—from the Vikings to the Huguenots and from the Dutch to the Irish. My father told me that our family were descended from members of the Spanish armada who were shipwrecked off the north coast of Ireland when they were trying to avoid the English fleet. We need to reflect and have a rational debate about immigration, not the hysteria that there sometimes is in this House.

[Mrs Moon]

Will my right hon. Friend give way?

[Mrs McGuire]

Very quickly, because I want to get on to the main substance of my speech.

[Mrs Moon]

Should we not get some of the figures clear in our heads? According to the Department of Health website, the actual cost to the NHS budget of the amount spent on foreign nationals is a mere 0.06%. This is not something that we cannot afford.

[Mrs McGuire]

As I have said, I do not want to go down that track but, having been nursed in a UK hospital by non-indigenous British staff, I think we ought to be more balanced in our comments on immigration.

The main focus of this debate—health and social care—is a vital issue for many people; even if they do not think so at present, it certainly will be in the future. As we are all aware, the changing demography and advances in modern medicine and technology have thrown up challenges to our society in how to develop the capacity for social care and, indeed, how to pay for it. The issue is not unique to the United Kingdom; it is a challenge in many countries across the world. As has already been said, the Administrations in Wales and Scotland are developing their own policies in the realm of social care.

Although the legislation under discussion relates to England specifically, I want to discuss some general issues that cut across the debate in the whole of the UK. Like my colleagues on the Opposition Front Bench, I welcome some aspects of the Care Bill, which builds on the work undertaken by my right hon. Friend the Member for Leigh (Andy Burnham), the shadow Health Secretary, when he was in government. I hope that the Bill will simplify the existing regulations, provide some confidence that lifetime assets will not be swept away by care costs, and—I stress that I hope that this will happen—eradicate the postcode lottery of care, introducing an element of consistency to the system. The Bill should also give stronger legal rights to carers—I echo the words of my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley)—who are often the forgotten players when we debate social care.

Having said that, there are still some major areas of concern and I want to concentrate on them. Frankly, they throw up challenges for everyone in this House, regardless of which political party we belong to. I am not convinced that the Government have thought through where young carers fit into the big picture painted by the new Bill. It is, of course, a welcome development that, for the first time, councils will have to meet the eligible needs of carers for support. I also welcome the aim for a family assessment, which in some areas should pick up the pressures on young carers.

Many organisations representing young carers, however, feel that many concerns have not been covered adequately. The well-being of young carers very much depends on the level of support that the person they care for—more often than not their parent—receives. If that support is not adequate, an unacceptable pressure remains on young people who should, to be frank, be doing other things. Council budgets are being stretched and care and support is being restricted in many instances to those who have critical or severe needs, so an unacceptable burden is still being placed on young carers who support family needs but who will not meet the new exacting standards.

I do not want to reiterate some of the points that other hon. Members have made about the need to move from the current random method of identifying young carers to a more systematic approach. I want to spend a few moments on the issue of working-age people who need support from our social services. Too often the debate on social care concentrates on older people, but it should not focus on them alone, because the reality is that about a third of people who rely on support are of working age and they are often forgotten. I am sure we will all agree that a younger person’s need for support from the care system is not necessarily the same as that of an older person. To that end, the all-party parliamentary groups on local government and on disability launched a joint inquiry to investigate how social care policy, funding and practice can better meet the needs of disabled adults. The hon. Member for South Derbyshire (Heather Wheeler), as chair of the local government all-party parliamentary group, and Baroness Campbell of Surbiton and myself, as joint chairs of the disability all-pary paliamentary group, were delighted that 10 parliamentarians of all parties and from the Cross Benches in the Lords agreed to undertake an independent inquiry.

The report will be launched officially on Wednesday, so I will not pre-empt its findings. I hope that colleagues will take time out of their schedules to come along and hear what the disabled people, organisations and experts that appeared before the inquiry committee said. The evidence is powerful and I hope that people will read it. When we debate health and social care over the next few weeks, I hope that we will listen to the voices of the people who matter: the people on the receiving end of the system. What they say gives us food for thought and food for action.

It is well documented that more than a third of the people who receive social care are of working age. We must also recognise that most of the pressure and innovation will be at a local level. It is important that we encourage local organisations and local government to ensure that there is innovation in the system. As my right hon. Friend the Member for Leigh said in his opening remarks, there is a funding crisis in local government that no amount of innovation can mitigate. There is only so much innovation that any system can support without the recognition of financial instability. It is not just Labour councils that are saying that to the Government; councils of all political persuasions are trying to persuade the Government that they cannot continue to support the pressure that is being placed on their social services.

Finally, we have spoken a lot about the cap and the protection of assets. The Government have not been clear about what will happen to people who do not have the capacity to build up assets, and I am talking about working-age adults who are disabled who have not had that opportunity. The overwhelming majority of people with learning disabilities will not be affected by a cap because they do not have an asset base to protect.

I hope that there will be a robust, challenging and honest debate about the future of social care.

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[Chris Ruane (Vale of Clwyd) (Lab)]

I wish to speak on four matters in today’s debate on the Queen’s Speech. The first—heart-related issues—has already been mentioned by my right hon. Friend the Member for Rother Valley (Mr Barron) and by the hon. Member for Mid Derbyshire (Pauline Latham), who is no longer in her place. I am the chairman of the all-party parliamentary group on heart disease, which was set up 12 years ago. I give credit to the Government for consulting on minimum pricing of alcohol and on plain packaging for cigarettes and tobacco. Both those consultations have been good, engaging MPs from all parties and, indeed, the wider community, but the Government have lost a golden opportunity to put these measures in this year’s Queen’s Speech.

Over the past 10 or 12 years, we have had a fantastic record on heart disease, with deaths going down by 46%. We have taken some big and bold decisions: for example, the Labour Government passed a measure to ban smoking in public places; we also introduced statins, which are largely responsible for the 46% drop in heart-related deaths. We must keep up the momentum, however, and minimum pricing of alcohol and plain packaging of cigarettes could have helped us to do so.

Each year, about 11,000 10 to 15-year-old children in Wales take up smoking. The industry wants to catch those smokers young and keep them smoking until they are 55, 65 or until they die, in order to keep up profits. Those young people have been deliberately targeted. The hon. Member for Mid Derbyshire mentioned the use of defibrillators and the teaching of resuscitation skills in schools. If the Government made progress on those, it would help to keep up our excellent momentum on tackling heart disease in the UK.

Many Members have touched on immigration and some have connected it with the health service. There will not be one of us in this Chamber whose life has not been touched by an immigrant worker in the NHS. My doctor for 25 years, Dr Rao—sadly, now passed away—came from the Indian subcontinent, while the man who delivered my first-born child was an Egyptian consultant, and I am really grateful to both of them. If all the immigrants working in the national health service left tomorrow, our national health service would collapse. I pay tribute, too, to the Filipino workers in the care sector—lovely, family-orientated people, who have great respect and great compassion for the elderly. Immigration is an issue throughout the country and we need to reflect concern about it in Parliament. What we do not need to do is add to it. We certainly do not need to whip it up, as I feel some Members have done today.

I praise the hon. Member for Mid Derbyshire for what she said about cancer treatments. I pay tribute to the work of my constituent Mike Peters, a friend of mine, who has had cancer twice in his life and currently has a chronic leukaemia condition. Mike is spearheading an international campaign to increase the number of donors of matching blood cells for leukaemia treatment. He has set up two organisations, the Love Hope Strength Foundation and Delete Blood Cancer UK. He is a rock star who is a lead singer in The Alarm and Big Country, and he tries to recruit people when he sings in countries around the world. He has personally recruited 35,000 donors, mainly in America, through his concerts, and 500 people’s lives have been saved as a result.

Mike is holding an event in Room R in Portcullis House on Tuesday 4 June. Anyone—any Member of Parliament!—aged between 17 and 55 will be welcome to become a donor. All it takes is a mouth swab. The DNA is then kept on file, so that anyone in this or any other country who needs stem cells will be able to gain access to them. Let me again pay tribute to the work that Mike Peters has done.

I now want to say something about how mindfulness can help with problems related to health and social care. Members may ask “What is mindfulness?” Mindfulness is an integrative mind-body-based approach which helps people to change the way they think and feel about their experiences, especially stressful experiences. It involves paying attention to our thoughts and feelings so that we become more aware of them, less enmeshed in them, and better able to manage them. It uses breath as an anchor to slow down the mind and body and to help us to live in the present moment, rather than being chased by our past or worried by our future. It is the perfect way to combat stress—and the impact of stress on heart problems, cancer and mental health conditions is massive.

Members may think that that sounds a bit airy-fairy, but the National Institute for Health and Clinical Excellence has backed mindfulness as a better way of treating repeat-episode depression than drug therapy. It puts the individual in control. It is as cheap as drug therapy in the short term, and cheaper in the long term. It has no known side-effects, and, if taught early enough, it is preventive. Let me give the House some statistics. A total of 32.3% of people aged between 15 and 25 suffer from one or more psychological conditions. Every Member in the Chamber will know someone with such a condition, perhaps even a family member. In 1991, 9 million prescriptions for anti-depressants were issued; in 2011, 46 million were issued. That is a 500% increase in 20 years.

[Mrs Moon]

As my hon. Friend says, one of the problems on which we need to focus is depression among young people. Young people oppose the idea of taking anti-depressants. Will my hon. Friend say something about the importance of mindfulness in enabling them to build up their self-awareness, their self-confidence and their ability throughout their lives to handle possible recurring depression?

[Chris Ruane]

I know that the incidence of suicides among young people is a particular issue in my hon. Friend’s constituency, and mindfulness has a role to play in that context.

Many Members have mentioned compassion today. Mindfulness can help to give compassion to the individual and also to the health care worker. If compassion is lacking, mindfulness can enhance it. It can be used within the health care system, and has been taken up by doctors who are then in a better position to relate to their patients. Earlier this year there was a mindfulness session in the House of Commons for Members of this House and the House of Lords, and another will begin on 4 June.

Mindfulness can help in a personal capacity, but it can also assist the development of policy in prisons—85% of prisoners have mental health conditions—in education, in the armed forces, in the police and fire services, and in any area where there is trauma. It can play a big role throughout society and in all departments. I urge the Department of Health to recognise that, to act on NICE’s 2004 recommendations, and to ensure that the use of mindfulness for the treatment of repeat-episode depression is fully implemented. I also urge the Department to consider carefully its possible use in other parts of the national health service.

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[Dan Jarvis (Barnsley Central) (Lab)]

I am grateful for the opportunity to contribute to the Queen’s Speech debate on health and social care. Protecting the health of young people, reducing preventable deaths and safeguarding the health of Britain’s population are three important goals, but the absence of a Bill to introduce plain packaging for cigarettes undermines the Government’s commitment to those goals.

Cancer is an illness that touches many people’s lives. Although research is key to finding new ways to treat cancer, the Government can take simple and practical measures to avoid preventable deaths. Last week, the Government failed to introduce one such measure that could help to reduce cancer and other forms of smoking-related disease.

The introduction of standardised, plain packaging had been heralded as a good idea by a number of members of the Government. The Under-Secretary of State for Health, the hon. Member for Central Suffolk and North Ipswich (Dr Poulter), a member of the medical profession, had previously shown his support for plain packaging. He said that plain packaging

“could certainly help to reduce the brand marketing appeal of cigarettes to teenagers, and most importantly, help to stop young people from developing a smoking habit that can only shorten their lives.”

I agree with him. The Under-Secretary of State for Health, the hon. Member for Broxtowe (Anna Soubry), has stated that the evidence she has

“seen suggests that it is the attractiveness of the packets that leads young people to decide to take up smoking.”—[Official Report, 16 April 2013; Vol. 156, c. 561.]

I agree with her, too, and yet, three years into this Parliament, no action has been taken by the Government.

According to Cancer Research UK, more than 100,000 deaths are caused by tobacco each year in the UK. That could be much reduced if the Government took meaningful action. Between 2006 and 2007, the Labour Government took action to curb the harmful effects of smoking by banning smoking in public places. As the shadow Secretary of State for Health has said, the introduction of plain packaging for cigarettes is a natural progression, and as the Leader of the Opposition said in his response to the Queen’s Speech, plain packaging is the right thing for public health and the right thing for the country. I agree with him.

Since the Government consultation on plain packaging closed some nine months ago in August 2012, more than 150,000 children will have started an addiction to a substance that results in the death of half its long-term users. I accept that the introduction of plain packaging is not a silver bullet, but neither is it the nanny state, as some have described it. Plain packaging is a means of preventing young people from taking up a habit that, in the long run, could cost them their lives. Some 257,000 11 to 15-year-olds become smokers each year, and that number is unacceptable. We already have legislation to prevent children below the age of 18 from buying cigarettes. We banned smoking in public places, but more needs to be done.

[Mrs Moon]

The allegation is that it would be a nanny state if we introduced plain packaging. Is that not a contradiction, given that we know that state intervention often saves lives? If we had been worried about the nanny state, we would never have introduced seat belts or drink-driving laws, yet we would never move back from those. Is it not time we moved forward on plain packaging as well?

[Dan Jarvis]

I completely agree. The term “nanny state” has been used, but we want to prevent young people from taking up a habit that in the long term could cost them their lives. In 2013, Labour Members are on the correct side of the debate, which is also where the public are.

We should pause to consider the financial costs of smoking, which can be seen in its impact in towns such as the one I am proud to represent. The financial costs encompass much more than heightened NHS expenses; lost output and lost productivity both increase the price associated with smoking. For Barnsley alone, smoking creates a bill amounting to £75.3 million each year.

Yet the financial cost is small compared with the human cost. In Barnsley, there are 485 adult deaths from smoking each year. Despite that, nearly 1,000 children in Barnsley aged between 11 and 15 take up smoking each year and approximately 1,100 10 to 14-year-olds there are regular smokers. Like the rest of the UK, Barnsley has paid too high a price. It is time that action was taken to prevent the costs of smoking from stretching further and further into the future.

Let us be clear: advertising works. If it did not, the tobacco industry would not spend such vast amounts of time, money and effort on packaging presentation and it would not be opposing plain packaging with such vigour. For the tobacco industry, packaging is a form of advertising that helps to keep existing customers loyal and attracts new ones. On that point, the World Health Organisation is clear:

“Marketing of tobacco products encourages current smokers to smoke more, decreases their motivation to quit, and urges”

young people to start.

Of course children will be attracted to sophisticated and glamorous packaging. When he was Health Secretary, the Leader of the House echoed that view, stating:

“It’s wrong that children are being attracted to smoke by glitzy designs on packets…children should be protected from the start.”

Unusually, I agree with him.

A lack of evidence cannot be used as an excuse for delaying the essential legislation. Advertising does impact on young people’s decisions, and in the context of smoking that means that children’s health is put at risk. The trade-off between the tobacco industry and children’s health has been in favour of the industry for too long. It is time that something was done to redress the balance.

There is also clear support for plain packaging from the public. Last year, 63% of the UK public supported standardised, plain packaging and only 16% of people opposed it. A lack of public support is not holding the Government back from introducing the legislation; in fact, 85% of people back Government action to reduce the number of young people who start smoking.

By delaying the next step in smoking prevention, the Government are not only putting a future generation’s health at risk, but ignoring a key issue that British people want and need Parliament to address. There is the evidence, the public support and the moral imperative to act, yet the Government have so far failed to take the definitive action needed to save lives, reduce health care costs and prevent children’s health from being put at risk.

Madam Deputy Speaker, please accept my apologies for not being able to attend the winding-up speeches. Let me conclude by saying that I am in no doubt that plain packaging is the right thing for public health and the right thing for the country. I am in no doubt we will have plain packaging. When we get there, we will wonder why it took so long to protect children against the harmful impacts of smoking and about the lives that could have been saved if we had acted sooner. We can stop that wondering if we act sooner rather than later. We know that advertising works and that smoking kills. It is time to do something about it.

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[Mrs Madeleine Moon (Bridgend) (Lab)]

There are approximately 6 million carers in the UK, 2.2 million of whom provide more than 20 hours of care a week. Between them, they provide more than £119 billion- worth of care each year. They are listening to this evening’s debate. They want to know whether what is in the Queen’s Speech are empty words and further promises, or whether their lives will improve and changes will be made.

A lot of people have spoken of the work undertaken by my right hon. Friend the Member for Cynon Valley (Ann Clwyd) in the complaints review. I have sent copies of the letters I wrote when I made a complaint about the absolutely appalling treatment of my mother in an English hospital over a number of visits. I worked hard to make the complaint stick and ensure that my voice as her carer was heard, but even I, as a Member of Parliament, was worn down in the end.

I have sat in this debate and listened to Government Members criticise the Welsh health service. I have a very sick husband. He uses the Welsh health service, and I am grateful for the quality of care that he receives from it every day of the week. I know that my GP service is excellent and I know that if I need care from my local hospital for him, it is there, so I want to hear no more nonsense about the Welsh health service.

[John Glen]

Will the hon. Lady give way?

[Mrs Moon]

No, I will not; I am in the midst of my speech.

In Bridgend, there are 18,000 people providing care for relatives or friends. Some 5,500 of them provide unpaid care for more than 50 hours a week—care that is compassionate and dedicated; care of a quality that we would love to hear is being provided in our hospitals. I asked a group of carers recently what it meant to be a carer. One of them said, “It’s like trying to live two people’s lives and cramming them into one person’s life.” The other said, “You’re an expert in bodily fluids. Urine, faeces, blood and vomit are the daily recipe.” Is it any wonder that the Royal College of General Practitioners recommended last week that all carers should be screened for depression? It recognises that carers are particularly susceptible to depression and that there is a need for greater support.

Carers UK has reported that almost a third of those caring for 35 hours a week or more receive no practical support, while 84% of carers surveyed said that caring had a negative impact on health. That is up from 74% in 2011-12, so the problem is getting worse. Four in 10 —42%—of those caring for someone discharged from hospital in the last year felt that the person they were caring for was not ready to come out of hospital and that they did not have the right support at home. I worked in discharge care in a number of hospitals in Wales. Safe discharge was a major platform on which we worked. The things that are a problem remain the same. There is a lack of specialist equipment readily available for carers to assist with discharge—I am talking about beds that prevent bed sores, hoists, commodes, adapted bathrooms, swallowing assessments, speech and language therapy, occupational therapists and physios. It is not just nursing we need to focus on; it is all those important services.

We also need to look at the availability of treatment and medication that make a difference to people’s lives. I want to talk briefly about a condition that really shocks me and the carers of those who have it: aHUS, or atypical hemolytic uremic syndrome. I am the co-chair of the all-party kidney group. A few weeks ago I chaired a meeting of people with aHUS. There is a drug available for the condition that is called—excuse me, Madam Deputy Speaker, but it is a dreadful drug to pronounce—eculizumab. It sounds like some sort of African tribe, but that is what it is called. Taking eculizumab can virtually cure someone with aHUS. They get their life back. We are talking about a very small number of people who have the condition—less than 170. The typical form is triggered by a bacterial infection such as E. coli; the atypical form is genetic. We heard tragic evidence from families in which perhaps three or four generations of children and adults carried the genetic trigger. More importantly, the only treatment other than taking eculizumab is to have dialysis on a virtually daily basis. We heard from carers who have to place the extremely painful and long needles needed for dialysis into their children’s arms. Those children cannot have a kidney transplant because the transplant would almost certainly have the same condition. Even if they had a transplant, they would continue to need dialysis.

I am appalled to learn that the Government have agreed that those who are taking the drug on a trial basis may continue to take it, while those who have already been diagnosed but refused access to the drug on a trial basis will not be allowed access to it. Newly diagnosed patients will, however, have access to it. That is nonsense. We could save a large amount of money, and we could save those patients the trauma of daily dialysis. The drug was recommended for use by the Advisory Group for National Specialised Services and it has now been submitted to the National Institute for Health and Clinical Excellence for further appraisal. Sufferers of the condition might therefore have to wait until 2014 to get access to it, which is totally unacceptable.

Madam Deputy Speaker, I am sorry that I shall not be able to stay for the winding-up speeches, but I hope that the Minister will consider whether it might be possible for access to this drug to be extended to all sufferers of aHUS, so that they and their carers can once more have a decent quality of life, and so that the NHS can save money.

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[Grahame M. Morris (Easington) (Lab)]

I thought that, rather than speaking about Europe or votes for prisoners, I might make a couple of points about health and social care.

There are many provisions that I should have liked the Government to include in their legislative programme. For instance, I should have liked to see a commitment to extending freedom of information requests to private health care companies. I should also have liked to see a commitment to excluding health care from the scope of trade agreements as part of a broader exclusion of public services. I understand that the Prime Minister is involved in negotiations at this moment, and I hope that the trade agreement issue is on his agenda, because there is an increasing fear among Opposition Members that—in that context, and also as a result of the Health and Social Care Act 2012—our health care system is being prepared for privatisation, and the way is being cleared for the mass entry of United States health care multinationals to the UK market.

I am pleased that the Care Bill is to be introduced in the current Session. It will go some way towards helping those who are most in need of social care, as well as their carers, providing as it does the first ever legislative framework for social care. It is a much-needed first step in the right direction, which has been a long time coming. However, it raises a great many issues. As usual with this Government, we need to look beneath the veneer and establish whether an opportunity is being taken or missed, and whether we are taking one step forward and several steps back. It would certainly be a retrograde step to raise expectations only for them to be dashed as people discover that the proposals are really quite limited. We need to be honest about what is on offer.

Members often receive some shocking and surprising statistics in their mailbags, but some of the most surprising pieces of information that I have seen relate to social care. I must thank a range of organisations—including Scope, Age UK, the Alzheimer’s Society, the TUC, the British Medical Association, Barnardo’s and the European Federation of Public Service Unions—for supplying briefings to me and to other Members. It shames me, and I am sure it shames Members in all parts of the House, that in Britain in the 21st century four out of 10 disabled people who receive social care support say that it does not meet their needs. That was established recently by research on social care conducted by the disability charity Scope following the publication of a report by the Joint Committee on the draft Care and Support Bill, on which I served. It is feared that the current provisions, and some of those that are proposed, will not be sufficient.

Other Members have welcomed the Bill. However, it is hugely worrying that local government finance has been hollowed out. That will have major consequences. It has been said that local government allocations for social care are protected, but they are certainly not protected when it comes to provision for transport and other supplementary services that are of value to members of the group involved. Many organisations have pointed out that setting eligibility criteria for care at “moderate” is essential if this framework is to be effective. As the hon. Member for Bradford East (Mr Ward) pointed out, according to the findings of a survey by Scope, by 2012 84% of councils had set their eligibility criteria at the “substantial” threshold. That represents an increase of nearly a third since 2005. As a result, only 14% of people with “moderate” needs are now receiving care, and the findings of recent surveys suggest that the position will only get worse.

According to Marc Bush, head of research and public policy at Scope,

“if we take moderate level needs, there are 36,000 people within the system of working age who, if the reforms go through as they are currently set, would fall out of the care system…if you do not meet need early, people's needs escalate and the costs escalate.”

Mr Bush’s evidence is in paragraph 186 of the Joint Committee’s report. Indeed, the Local Government Association has estimated that by 2019-20, 45% of council budgets will be spent on social care. Unless we increase substantially the amount of resources available—

[Mrs Moon]

There is pressure on people with illnesses and with disabilities if they do not get access to that social care, but should we not acknowledge the wider pressures on their families, who have to fill that gap all too often? That means taking time off from work and reducing the time spent on their leisure pursuits, thereby adding to family tensions.

[Grahame M. Morris]

That is an excellent point. The role of carers and families is absolutely critical; they are an army of unsung heroes.

We cannot build a quality care service based on driving down the terms and conditions of the people who deliver it. I am very concerned about the increase in the number of zero-hour contracts, through which staff are paid the bare minimum. Such contracts are increasingly being used by private care companies seeking flexibility when meeting short-term staffing needs, and they often lead to job insecurity and a lack of appreciation of workers. We are seeing the fragmentation of social care, driven by the pressure to cut costs, which only places obstacles in the way of quality and of integrating services. Contracting out and privatisation also make it more difficult to have joined-up services, and there is a real risk that local authorities will find it impossible to comply with their new duties.

We should be honest about what the Bill can achieve. It is a framework. It is paving legislation. It will not stop people having to sell their homes to pay for care. Under the existing deferred payment scheme, councils can loan money to people to cover their care costs, which has to be paid back by selling the family home after the elderly person has died. The Government propose something similar, but unlike the current system, interest is charged on the loan. The care Bill will not necessarily cap at £72,000 the costs elderly people actually pay for residential care. As has been said, hotel and other accommodation charges are not covered. Many elderly people in care homes will die long before they reach the cap that is being trumpeted as such a success. It certainly will not mean that pensioners get their care for free if they have income or assets worth up to £123,000. Elderly people will get free care only if they have income or assets under the lower means-tested threshold, which is not being increased and will be £17,000 in 2016.

More widely, the care Bill does nothing to address the funding crisis in social care or to help those who face a daily struggle to get the support they need right now. Elderly and disabled people are facing huge increases in home care charges, which are a stealth tax on the most vulnerable people in society. Few older people are getting their care for free, and more older and disabled people are being forced to pay for more vital services that help them to get up in the morning and get washed, dressed and fed.

We need a far bigger and bolder response to meet the needs of our ageing population: a genuinely integrated NHS and social care system which helps older people to stay healthy and live independently in their own homes for as long as possible. That would truly reinstate the idea of people being looked after from cradle to grave—a worthy extension of Aneurin Bevan’s legacy. Labour’s alternative is integrated, whole-person care, incorporating health, mental health and social care in a truly national health and social care service.