Polycystic Kidneys

Glyn Davies Excerpts

Tuesday 6th November 2012 Commons Chamber

[Glyn Davies (Montgomeryshire) (Con)]

Does the Minister agree that we have a duty as parliamentarians to do everything in our power to increase the level of organ donation? Does she also agree that we should implement every recommendation of the organ donation taskforce? It is working very well, but we need to move quickly to maximise the number of organs available.

[Anna Soubry]

I absolutely agree with everything that my hon. Friend says. I was horrified to discover in a recent meeting that unfortunately in England we are not making the progress on organ donation that we should. It is a serious problem. We know that so many lives can be saved or seriously improved if people are good enough to indicate that they are willing, on their death, for their organs to be donated.

Let me go further and say this: of course I understand why, when somebody dies, the family struggle in their bereavement to give permission to allow the loved one’s organs to be donated. However, I urge people to do so, even in those very difficult situations. It is a most wonderful way to create a real legacy by enabling somebody literally to live on through someone else. If more people could, in those dark moments, see that, it would make a profound difference to improving, and indeed prolonging, lives.

Adult Social Care

Glyn Davies Excerpts

Monday 16th July 2012 Commons Chamber

[Dr Daniel Poulter (Central Suffolk and North Ipswich) (Con)]

It is a great pleasure to follow the hon. Member for Luton North (Kelvin Hopkins). I commend him for his ability to get Europe into almost every debate we have in this House. I am not sure whether his sums quite added up at the end of his speech, but it is commendable that we have seen a commitment across the House this evening to improving the dignity and quality of elderly care, which is something I am sure we would all like to see.

All previous Governments have taken steps in that direction, but I believe that the White Paper and the draft Bill that this Government have brought forward represent the most significant steps towards improving dignity in elderly care for a generation. The “in-principle” support for Dilnot and the Dilnot proposals is a good recommendation, and it needs to be considered in the context of whole-government spending at the next spending review. However, for the first time there has been an in-principle agreement by a Government that social care is one of the most important issues and challenges facing our country. How we are going to provide dignity in elderly care—high-quality care in the community—is a clear priority for this Government, and that should be commended.

I want to outline some of the real challenges that face people who are in receipt of social care, particularly the frail elderly. The hon. Member for Blaydon (Mr Anderson) pointed out that it can be difficult to distinguish between NHS care and social care, because they often involve exactly the same things. They include supporting the activities of daily life that we all take for granted, such as washing, dressing, getting in and out of bed or the bath and going up and down stairs. Those are the kinds of things that we mean when we talk about providing high-quality social care, and this Government have put forward strong measures that will make it much easier to provide such care for the people who most need it.

The White Paper and the draft Bill provide for support for carers, and for improving the personalisation of care, which is particularly important for younger people in receipt of social care, as the hon. Member for Scunthorpe (Nic Dakin) said. Respite care is also recognised as an important means of better supporting carers, giving them a break from the hard work of looking after people and ensuring that the role of carers is properly supported. The proposals also include a commitment to portability of care, and to a universal care assessment.

[Glyn Davies (Montgomeryshire) (Con)]

I raised the issue of portability with the Secretary of State last week. It is crucial that a debate should take place about what we are doing here and what is happening in Wales, as this is a devolved matter. There must be close liaison between us. I understand that the initiative must come from the Welsh Government but, without that liaison, people will fall between the two countries.

[Dr Poulter]

My hon. Friend makes an important point. Social care and NHS care do not recognise county borders, which is why portability is so important. They certainly do not recognise the boundaries between England and Wales or between any other parts of the United Kingdom. We have devolved responsibility for the NHS, and the fact that there are different funding priorities in the different parts of the UK, with the Government in England supporting investment in the NHS and the Labour Administration in Wales cutting NHS spending, highlights the importance of my hon. Friend’s point. I am sure that the Minister will be able to reassure us that the coalition Government are taking steps to ensure that portability can take place across those borders wherever possible.

The White Paper also contains a commendable commitment to improving integrated care and ensuring that more joined-up working takes place between the NHS and social care.

--- Later in debate ---

[Ms Diane Abbott (Hackney North and Stoke Newington) (Lab)]

No family in the land is untouched by the challenges of social care. Families up and down the land who will watch this debate or read about it know that if social care is not an issue for them today, it may be an issue for them later. Labour Members therefore think it is important that it is spoken about not in policy wonk or accountancy terminology, but in terms of people. That is because it is an issue about people, be they the elderly, the disabled, the young disabled, about whom we heard eloquently just now, the carers within the family or the tens of thousands of men and women who work as professional care workers, about whom my hon. Friend the Member for Blaydon (Mr Anderson) talked so eloquently earlier.

Let me say from the outset that the Opposition accept that this is an issue about which we could have done more. Social care and the challenges it poses in the 21st century are unfinished business for Labour. However, it is not true to say, as some Government Members have unfortunately done, that Labour was wholly inactive on the issue of social care. We heard from my hon. Friend the Member for Leicester West (Liz Kendall) about all the steps we took and the innovations we made on issues associated with social care. To say that we were totally inactive is quite wrong and is merely party political point scoring, but it is true that we did not grasp sufficiently early the political nettle of how social care is to be paid for. That is why, from the very beginning, we offered talks and entered willingly into them, and why we remain willing to resume talks, so long as Ministers are acting in good faith.

Social care is an issue for families up and down the land. Government Members have said that people have to understand that they are going to sell off their homes, but the point about that is that homes are not mere bricks and mortar. These may be the homes that people came to as a young married couple and where they brought up their children; these are homes freighted with memory, emotion and family life. It is too easy to say that people have to be ready to sell off their homes. This is about people; it is not just about figures on a piece of paper.

Social care is also quintessentially an issue for the squeezed middle, to use the phrase of my right hon. Friend the Member for Doncaster North (Edward Miliband). The very poor will not have to meet their own costs, although there are still issues to address about standards of care, and the cost of care is not a problem for the extremely wealthy. This is an issue for the squeezed middle; it is an issue for people who, perhaps through years of struggle, have a home and assets and now see the frightening possibility—this is particularly the case for the elderly—of those assets being drained away because of a system that is not yet under control.

[Glyn Davies]

rose—

[Ms Abbott]

I am afraid that I will not be able to give way, because I want to leave sufficient time for the Minister to make her remarks.

We also have to address the issues of dementia and Alzheimer’s. They are largely dealt with as social care issues but in fact they are an increasing challenge for people as they grow older.

The Minister called social care Bevan’s orphan and I think that that is a little unfair. The world we face today is very different from the world of William Beveridge and the framers of the first national health service. People live much longer and do so with all sorts of long-term conditions, whereas changes in the role of women mean that there is no longer a vast, mute and hidden army of carers. There are also issues with dementia and Alzheimer’s.

The Opposition want to be collaborative rather than party political, but I would be failing in my responsibilities if I did not draw to the attention of Ministers the one message given to my colleagues and I as we have gone up and down the country talking to local authorities about the new public health arrangements and social care. Those in town halls, whether they are Labour or Conservative-led, have said that local authorities are under unprecedented financial pressure. Some of the things we heard from Ministers seemed to suggest a certain carelessness about or unwillingness to face up to the financial pressures that mean that local authorities are making real decisions that are affecting real people and real families. Ministers heard what local authorities are trying to do to make the money stretch. On the one hand, there are more stringent criteria, so people need to be in greater need to get social care at all, but on the other hand, they are squeezing the money and the standards. That is the only way it can happen.

If I could say only one thing to Ministers, it would be that they should listen not to the Opposition spokespeople or to Labour councillors but to their own Conservative councillors, who are trying to make them address the scale of the crisis that they face. They are very alarmed—we know that they are—that Ministers appear to be poised to place additional responsibilities on them without any ideas of how to provide funding.

I remember what the Prime Minister told this House in February 2010, speaking about social care. He said:

“What we want to know is: where is the money coming from?”—[Official Report, 10 February 2010; Vol. 505, c. 904.]

I have to say that councillors and families up and down the country, as well as Members of this House, want to know what is behind the fine words and what Ministers will do to fund the proposals outlined in their White Paper.

Precisely because I do not want to be party political, I will refrain from talking about the Conservative party’s party political broadcast on the death tax and the posters that said:

“Now Gordon wants £20,000 when you die. Don’t vote for Labour’s new death tax.”

I am not a party political person, so I shall leave that. I shall put it to one side.

We support Dilnot in principle, but we are a little concerned about the Secretary of State’s pick-and-mix approach to the recommendations. We are worried that although the White Paper reads well, it makes too many vague commitments. I would be grateful if the Minister could give me an answer on the question of loans, in particular. On that question, as she will be aware, the 1999 royal commission—sadly, we did not address the issues of funding that it raised—said that

“there would need to be an initial outlay of potentially between £1bn and £2.8bn…the scheme would be complex to establish, and to administer, probably very expensive initially and would leave the state with an uncertain liability. If Local Authorities administered it, they might be left with a complex burden of assets which would differ greatly from one part of the country to another. The Commission consider there little overall benefit to be gained from such a scheme.”

I would be grateful if the Minister could tell me —[Interruption.] It is a deferred payment scheme at the discretion of local authorities—[Interruption.] We want to know how the Government will fund the upfront costs and about the levels of interest. Members will appreciate that elderly people, in particular, are very concerned about issues of debt. On that and on a range of other issues, we are waiting for a little more detail from Ministers. They can sit on the Front Bench and make party political remarks, but that is no help to families throughout the country who are worried about how they can fund social care in the future. It is no help to local authorities, which say that in a very few years the cost of social care will have inflated so much that they will not be able to meet other needs from their budget.

There are many things in the White Paper that we welcome, not least because many of them were in the White Paper introduced by my right hon. Friend the Member for Leigh (Andy Burnham) on building a national care service. We say to Ministers that it is easy to score points. It is easy to talk about what could have been done in the past, but we need to meet the challenge of how we care for our elderly, our disabled and our young disabled. That is the challenge that the nation is facing now. The White Paper reads well, but Age Concern and all the stakeholders are asking how Ministers will fund it. We stand ready to enter talks. We stand ready to work with Ministers. All we ask from Ministers is that they act in good faith.

Care and Support

Glyn Davies Excerpts

Wednesday 11th July 2012 Commons Chamber

[Mr Lansley]

I know it is difficult for hon. Members when documents are published alongside a statement and they have not had an opportunity to read them, but when the hon. Gentleman does so he will know that what he has just said was utter nonsense.

[Glyn Davies (Montgomeryshire) (Con)]

I, too, greatly welcome today’s statement and congratulate my right hon. Friend on taking forward this important policy. Health and social care is devolved to the Welsh Government, but it is inevitable that statements, decisions and policy changes in England have a major effect on Wales as well, because some of the services provided to people in Wales are over the border in England. As well as cross-party talks, may we have cross-border talks to ensure that the system works well in Wales?

[Mr Lansley]

My hon. Friend makes an important point. We want people who move from England to Wales or from Wales to England to have continuity of care, so I will make it clear to my counterpart in Wales that I am entirely open to discussions about that. Given that it is a devolved matter, it is better in a sense if the initiative for those discussions comes from Wales, because I do not want to be interpreted as trying to impose any solution on Wales, but if the Welsh Government look for such discussions I will be open to them.

Cancer Treatments

Glyn Davies Excerpts

Tuesday 19th June 2012 Westminster Hall

[John Pugh (Southport) (LD)]

I thank all the people, from a variety of organisations, who made submissions before this debate in the hope that I could do justice to their thoughts and considerations. I may not succeed in doing so adequately, for which I apologise in advance, but other people in the Chamber, who are far better informed than me, can supplement any good, important or salient points that I fail to make.

It is a fact of the human condition that we are cell-replicating machines. I believe it is true—I am not totally certain, but I believe it is a truth—that none of the cells that were elected to this place in 2001 under the name of John Pugh are now here. They have all gradually been replaced, and some of them may actually be replaced during the course of the morning. That process goes on and on, and it is a very sophisticated one. When someone looks into the details of cellular biology, they are amazed that it occurs correctly as many times as it does. However, the longer we live, the more likely it is to go wrong, and when it goes wrong, we get the disease we know as cancer. It is a sad truth that the more we are saved from other diseases by progress in medical science, the more exposed we are to cancer.

Current stats show that, due to human longevity and the like, one in four of us are likely to die directly of cancer or a cancer-related condition. That will apply no matter what our success in investigating the environmental triggers for or the lifestyle causes of cancer.

We can all point to progress along those lines. We are no longer vulnerable to all the industrial causes of cancer, such as asbestos, and we took a momentous step forward in this place a few years ago when we backed the smoking ban, which remains the most useful thing I have done in Parliament, because it will undoubtedly reduce one of the major triggers for cancer. We now have to address other issues linked to cancer, such as obesity.

The disease is aggressive in youth and progresses slower with age, but, frankly, the longer we live, the more vulnerable we are to it. It is also true that many people will die with, but not of cancer. The challenge to any health system confronted with that crude biological fact is straightforward, and it is the same for any health system anywhere on the planet. I have divided the challenge under four headings. First, any health system needs to try to comprehend better the causes of cancer and initiate research. Secondly, any health system needs to try to prevent cancer and forfend its incidence. Thirdly, any health system—this is, of course, paramount—needs to cure people of cancer, where possible. Finally, any health and social system in any civilized society must help people living with cancer. Those four challenges are precisely the same for any health system anywhere, no matter how they are configured or delivered.

We have made substantial strides in the UK and our record should not be demeaned or lessened. During the passage through Parliament of the contentious Health and Social Care Bill, cancer stats were referred to and international comparisons were used to justify some of the changes. The oncology community had some misgivings about that, because its members felt that their real and substantive achievements were overlooked and that, for political purposes, people dwelled on what they had not achieved rather than on what they had.

The debate pack includes a good account of research by the King’s Fund and others on success in dealing with cancer. On European and international comparisons, an article in the pack states:

“While cancer deaths fell everywhere, England and Wales saw the biggest drop in mortality among males aged 15-74”—

that is, most males. The article continues:

“While mortality among women the same age declined by less, at 19%, that was the third biggest improvement”

in any civilised developed country in the world. We can, therefore, bank appreciable benefits and progress.

The difference between good and not-so-good policy is determined by the efficiency and effectiveness with which we approach the four fundamental tasks of comprehending the causes of cancer, curing people of cancer, trying to prevent cancer and trying to help people living with cancer, and by how intelligently we prioritise those tasks. An enormous amount of resources could be provided to address the problems presented by cancer, but such resources are not unlimited and we have to consider how we prioritise in every one of the four tasks. That applies to research, where people are continually examining how to prioritise the appreciable sums of money at their disposal in the most effective way. There are many debates about how we are to prioritise prevention and public health. Moreover, on prioritising treatment, recent discussions have centred on whether treatment for the elderly should be rationed or limited, because they may live longer with cancer but not actually die of it. There is also considerable debate, spearheaded by the likes of Macmillan Cancer Support, about the welfare provision for cancer patients.

I would like to turn briefly to public health, although it is not my main bone of contention. There has been a debate about how accurately we pitch our public health campaigns. Some have been excellent, particularly that on screening for bowel cancer, which I think has had an immediate and dramatic beneficial effect. My former colleague John Barrett is the former MP for Edinburgh West—he was elected in 2001—and he was diagnosed with bowel cancer through the screening programme shortly after leaving Parliament. He had absolutely no symptoms, but it is believed that it was caught in time. In fact, he was in Parliament recently and looked in pretty good shape to me. However, had the cancer not been detected—remember that he had no symptoms—it would have progressed as the years went by.

[Glyn Davies (Montgomeryshire) (Con)]

I thank the hon. Gentleman for giving way and allowing me to associate myself with the point that he is making. I am one of those whose cancer was found early, and I received treatment and survived. A younger friend of mine was diagnosed at the very same time, but his cancer was more advanced and he died aged 31. This is about catching it early and I want to emphasise the importance of screening, which saves a huge amount of lives. I have played a big part in driving forward the screening programme in Wales. Screening for bowel cancer is one of the best ways possible to save people’s lives.

[John Pugh]

I am sure that the hon. Gentleman is right and that he is also aware that there have been debates about screening for cervical cancer, breast cancer and so on, and about the age at which that should be done and the effect it would have. Although it is possible to screen everybody all of the time, that is not the most rational way to use resources, so any screening programme needs to be judged in the light of its subsequent evidence, which is very strong indeed for the bowel screening programme.

I was slightly, not amused, but distracted by the recent Department of Health advertisements—there were big adverts on buses—stating that anyone who has been coughing for three weeks should definitely go to see their doctor, because they might have lung cancer. When the advertising programme was launched, a horrible virus had gripped my office, the most lingering symptom of which was a cough that lasted for three to five weeks. Had we all trooped to our doctors’ surgeries saying that we might have cancer, a good deal of national health service time would have been wasted. Any campaign needs to be sophisticated and reviewed in the light of evidence. The one thing that we do not want a public health campaign to do is provoke alarm, because that would distract doctors from the things that we genuinely want them to address. People are not slow to be alarmed by any suspicion of cancer, which, I believe, after pornography and some other subjects, is one of the most researched topics on the internet. It is frequently referred to on various medical sites as a suspicion, rather than a diagnosis.

The academic community also has to prioritise. A lot of people leave substantial amounts of money for cancer research and it needs to be used as effectively as possible, as do welfare payments to cancer patients. Those issues need to be prioritised—Members may care to discuss that in the context of the Government’s ambitions for the outcomes framework.

I want to concentrate on the connection between treatment and health policy. The clinical armoury and tools available to medical science are pretty well known and can be put under four headings: chemotherapy, radiotherapy—possibly supplemented by more sophisticated treatments, such as proton beam therapy—drugs and surgery. A cocktail of those methods is used to treat cancer. All, in their place, can be extraordinarily useful and effective interventions, but the key thing that determines whether they have the maximum effect on and benefit for patients is whether they are used with skill—the right skill at the right time in the right place, and probably in the hands of the right doctor or consultant.

I learned relatively recently that, although we talk broadly about categories of cancer, there are sub-categories within those categories, and not every sub-category is responsive to the same treatment. Knowing which treatment is best tailored to which patient is a genuine art, because patients and their histories are all very different, as are the remedies that work with them.

Improved outcomes are to some extent determined not simply by having the tools but using them with better and greater skill. It is the skill or its absence that explains differential outcomes. There are differential outcomes across the UK. The chance of recovering from certain cancers in some areas is greater or less than in others. The chances of acquiring certain cancers appear to be greater in some areas than others. Genuine skill—knowing what to use on what person at what time—is in extraordinarily short supply. That sort of skill, the really effective intervention, is often allied with establishments that not just treat cancer, but research into cancer. Great skill is often, not unsurprisingly, aligned with a greater understanding of what is being dealt with. Treatment of cancer is not usually a journeyman matter or one of bog-standard clinical intervention and practice. That is why organisations such as the Christie hospital have such a well-established reputation.

I know the Government have put extra money into the drugs fund. Using the right drug in the right place at the right time is a fairly refined process. People can be given drugs that work with a cancer in general, but not for that particular patient or not at that stage in the disease, by organisations relatively unaware of the futility of the intervention. Therefore, we have all understandably come to the conclusion that we need clinical networks. We need to have people dealt with in the appropriate centres of excellence. There is a genuine readiness by patients to travel as far as they need to get the treatment. Most people in my constituency who contract any form of cancer travel across Liverpool, normally to Clatterbridge on the Wirral, generally without too much complaint, to get the treatment they want. The same group of constituents has been extremely angry and provoked by the need to travel 11 miles down the road for A and E assessment and triage.

Adult Social Care

Glyn Davies Excerpts

Thursday 8th March 2012 Commons Chamber

[Kelvin Hopkins]

I thank the hon. Lady for her intervention, but I think that the system is broken because it is underfunded and we have forged ahead with privatisation. In my constituency, we had a wonderful care home, which I knew well because my mother-in-law lived there in the last few years of her life. She and the other residents loved being there. They had permanent, dedicated staff, all from the local community, who loved working there. All the health advisers and professionals who came into the home thought that it was wonderful. It was closed. The pretext for that was that it did not meet care home standards because it did not have en-suite facilities. It was a trick—a pretext for closing homes and forcing them into the private sector. That home was closed, the land was sold and all the residents went into private care, some of which was not very good.

[Glyn Davies (Montgomeryshire) (Con)]

I thank the hon. Gentleman for allowing me to intervene because it gives me an opportunity to contribute to the debate, a lot of which I missed because of the debate on the common agricultural policy in Westminster Hall that I had to attend.

The hon. Gentleman’s speech is about residential care homes. With the best will in the world, no matter how successful we are in developing domiciliary care, private sector residential care homes will play a big part in care for the elderly. Does the hon. Gentleman agree that, after the stories about the lack of regulation, including financial regulation, in private care homes in the past couple of years, we in Parliament will have to ensure that all residential care homes meet a certain standard for long-term sustainability so that people are not moved around without any real control?

[Kelvin Hopkins]

I agree with the hon. Gentleman entirely. The Care Quality Commission was encouraged to have light-touch regulation and to do only occasional inspections, of which the homes were usually warned. The inspections were not adequate, and many homes fell below the standards anybody would expect. If every care home was rigorously inspected, with spot checks from time to time, we might ensure that they lived up to the standards that we expect. However, it could cost a bit more because they might have to employ more qualified staff and so on.

We should professionalise the system and ensure that it is properly regulated and checked, even if it stays in the private sector. I personally prefer public provision, with people who are motivated by what I call the public service ethos. I have seen that working and I have seen what has replaced it. People come to my surgery and complain about being forced to move out of care homes that are being closed. That is especially difficult for those with dementia. People are pressed to go into other homes, which the residents’ families often find inferior. Some are good, but not all, and people are unhappy that three care homes in my constituency have closed.

The first home closed 10 to 12 years ago and I remonstrated with the local authority officer concerned. After an hour, he finally said that it was about costs: that private care homes pay lower wages, and that the staff work longer hours and have shorter holidays. I said that at least that was honest, but it was not right.

I disagree with my right hon. Friend the Member for Leigh (Andy Burnham) about young people paying. Most taxation involves redistribution to ourselves at other stages of our lives. When we pay national insurance contributions for pensions, we are in a sense saving for ourselves later through a state system. With the health service, we pay in when we can and take out when we need. It is a redistribution to ourselves. The young paying in now for long-term care is a sensible approach, especially as it will be proportionate.

NHS Risk Register

Glyn Davies Excerpts

Wednesday 22nd February 2012 Commons Chamber

[Mr Jones]

The same practice was followed by the shadow Secretary of State’s predecessor as Health Secretary, the right hon. Member for Kingston upon Hull West and Hessle (Alan Johnson).

[Glyn Davies (Montgomeryshire) (Con)]

Does my hon. Friend agree that the Opposition know perfectly well that what they are asking for is unreasonable, and that the case that he is making is absolutely sound? They are seeking to discredit the Government rather than support the NHS, and they are taking a completely irresponsible position.

[Mr Jones]

I absolutely agree. The points that they are making today are just as confused and incoherent as the rest of their policies. They seem to just cut and paste their policy with some frequency to suit the bandwagon that they wish to jump on at a particular point.

Stoma Care

Glyn Davies Excerpts

Wednesday 25th January 2012 Westminster Hall

[Jonathan Evans (Cardiff North) (Con)]

Thank you, Mr Hollobone, for that generous introduction. It is a privilege to serve under your chairmanship for the first time in my political career, and I hope that I will enlighten you.

Every year, more than 40,000 people in this country are diagnosed with bowel cancer. Bowel cancer is the UK’s second biggest cancer killer, but if found early enough, 90% of patients can be treated successfully. Often, colon or bladder surgery will lead to the fitting of stoma products or bags. Two thirds of such patients are estimated to need stoma care for the rest of their lives. With more advanced screening and the excellent work that is being done to raise awareness, it is expected that those patient numbers will only rise to even higher levels.

Valuable work is being done by many charities in this sector, and I give particular praise to Lynn Faulds Wood for her efforts in highlighting the prevalence of bowel cancer and for campaigning for greater awareness and early intervention. The charity Beating Bowel Cancer has designated this week as “be loud, be clear” week, and the charity is at Westminster today—its members are at the Speaker’s apartments as I speak—raising awareness among our parliamentary colleagues.

We are all in debt to such individuals and organisations for their campaigning work, but I want to make it clear that the focus of this debate is not on the challenges of bowel cancer itself, but on two specific concerns in relation to the current operation of stoma care—the care of those who have had colon or bladder surgery and require the fitting of medical devices, such as stoma bags. My concern relates to the private commercial sponsorship of stoma nurses and the potential impact of major changes that are being discussed between private sector manufacturers and primary care trusts that might eliminate any patient choice in relation to the medical appliances that they receive.

I am grateful to the three major patient groups in this sector—the Colostomy Association, the Urostomy Association and the Ileostomy and Internal Pouch Support Group—all of which have supported me in drawing attention to these issues and provided helpful background information.

Let me set this debate in context. There is almost daily comment about the Government’s proposed reforms of the NHS, and any such debate regularly throws up the charge that change in the NHS inevitably means privatisation of the NHS. Only last week, the House debated those issues, and over the weekend the head of the Royal College of Nursing added his voice, on behalf of the nursing profession, to those who are calling on the Government to abandon their reforms. It has therefore been a major surprise to discover over the past 18 months that the vast majority of NHS nurses who provide stoma care through health trusts in the UK actually have their salaries met by private commercial sponsors.

[Glyn Davies (Montgomeryshire) (Con)]

I am one of the 40,000—I contracted bowel cancer in the past and have had a colostomy. I also have a commercially sponsored stoma nurse, who is a guardian angel. We need to realise that a number of stoma nurses are marvellous. My stoma nurse made it clear to me that there were alternative products that I could have used, but it so happens that I accepted one from the same company that was paying for her. It was clear that I could choose any product that I wanted, and I was not put under any pressure.

[Jonathan Evans]

I respect my hon. Friend’s views on many matters and also have only praise for stoma nurses, but that does not take away many of the concerns in relation to sponsorship. Sponsors have a direct interest in the clinical decisions made by nurses, because they are the manufacturers of the products that are being prescribed under the NHS.

If the Secretary of State for Health had proposed the introduction of such an arrangement—the sponsorship of nurses by commercial organisations—as part of his current reforms, we can imagine the outrage it would have produced. “Newsnight” and the “Today” programme would have relentlessly questioned the Minister. We might even have seen a “Panorama” special on the BBC. The reality is that this extraordinary situation started more than 30 years ago and expanded to its current pre-eminence during the years of the previous Government.

The concept was thought up not by the commercial firms themselves, but by the health care trusts, which first approached the manufacturers to explore the commercial opportunities. The Department of Health does not appear to have played any part in the dialogue, not even in terms of establishing a protocol that could reassure the public that commercial sponsorship does not impact upon clinical judgment, just as my hon. Friend the Member for Montgomeryshire (Glyn Davies) has said that he is satisfied that that was not the case in his experience.

--- Later in debate ---

[Glyn Davies]

Will the Minister give way?

[Paul Burstow]

Let me develop my point a tad further and then I will be more than happy to give way to my hon. Friend, although I hope to ensure that I conclude answering the questions of my hon. Friend the Member for Cardiff North.

My hon. Friend is absolutely right. As part of the reforms that the Government are introducing, we need to ensure that we close the loopholes that the previous Government left gaping in their legislation. We also need to ensure that, as a Government, we have transparency and clear rules under which people operate, so that we see competition as a servant of the patient’s interest and not as an end in itself. That is absolutely integral to those reforms.

[Glyn Davies]

I simply wish to say how shocked I was to discover the arrangements nearly 10 years ago, when I was given a colostomy nurse of my own. I was making the very point that my hon. Friend the Member for Cardiff North (Jonathan Evans) made—that by pushing the matter, I was threatening the future of the service in that particular hospital. If we try to address what is a legitimate concern, we must have a guarantee that there will be funding, so that we do not have a repetition of the Scottish experience.

[Paul Burstow]

That is a very succinct summary of the case that our hon. Friend has made in his Adjournment debate today.

Let me say something about prescribing arrangements because it may help if I set out the arrangements for these products or appliances, as they are usually called, in terms of the NHS in England. Prescribers operating under the NHS primary medical care contracts are able to prescribe as appropriate for their patients those stoma and neurology appliances listed in part IX of the drug tariff. There should be no barriers to prescribing a stoma product on the NHS, as long as it is listed in part IX of the drug tariff. NHS dispensing contractors, pharmacies, dispensing appliance contractors and dispensing doctors are able to dispense prescriptions of these products. Primary care trusts are responsible for ensuring that general practitioners are complying with their primary medical care contractual arrangements and that dispensers are complying with their contractual frameworks. Within that, there is a set of checks already in place to deal with the prescribing practices of GPs.

Care of the Dying

Glyn Davies Excerpts

Tuesday 17th January 2012 Westminster Hall

[Glyn Davies (Montgomeryshire) (Con)]

This is a complex subject about which one could probably speak for around half an hour. I will try to confine myself to three minutes and make an important point that I do not think has been made previously. I do not want to repeat points already made by other hon. Members.

I should begin by declaring an interest. I am a board member of Living and Dying Well, which is an active and committed organisation that examines and publishes evidence-based research into assisted dying. There are many aspects to this debate, and I congratulate my hon. Friend the Member for Enfield, Southgate (Mr Burrowes) not only on his speech but on the measured tone in which it was delivered.

I have probably received more communication from constituents about assisted dying than on any other subject. Most of those who have contacted me disagree with my point of view; I am totally opposed to any change in the law. All those people, however, approached me on the basis of compassion, usually for an individual whom they know—I am sure that many hon. Members present, and others, know of people whose lives are coming to an end and who are living in such difficult circumstances that it is almost a blessing when that happens. Such circumstances have led people to feel that there should be a change in the law. We, however, are parliamentarians, and although I feel compassion for the individual and understand and respect the views of those who disagree with me, we as legislators have a duty of compassion to society as a whole. In my view, we cannot introduce laws that are geared towards individual cases and are dangerous and could lead to situations such as those already mentioned where pressure is put on individuals and suicide is normalised.

In a perfect world, every terminally ill person would be clear thinking and not suffering from a mental illness from which they might recover; every doctor would be professional and competent to make a judgment about the end of life; and every relative would be full of compassion and motivated by nothing else. Our society, however, is not like that. We live in an imperfect society, and our laws must allow for those imperfections.

A debate to be held next spring will consider assisted dying, and we will all be able to make a huge number of points and provide evidence. I would be deeply sorry if we move towards legalising assisted dying and I think that it would be a dreadful mistake, but we should leave that discussion until that debate. Let us recognise that, as parliamentarians, we have a duty first to make a huge commitment to social and palliative care—which as a society we have never done—and to help people at the most vulnerable stage in their lives. We should not go down the road of making things convenient by simply removing those who are most vulnerable and most need our care away from our society altogether.

[Several hon. Members]

rose—

Organ Donation

Glyn Davies Excerpts

Wednesday 30th November 2011 Westminster Hall

[Glyn Davies (Montgomeryshire) (Con)]

This is the first time I have served under your chairmanship, Mr Crausby, and it is a pleasure to do so.

I have several brief comments to make before I start on the substance of my speech. First, I must declare an interest, although not a pecuniary one. I am a member of the Kidney Wales Foundation and it is important that I make that clear at the start. I have been interested in this subject for many years because a very dear friend of mine was one of the first to receive a heart and lung transplant at Papworth. She died about two months ago, but for 20 years we discussed the subject on a monthly basis. We did not agree, but our discussions inspired my interest in transplantation as a whole. In particular, we worked on local dialysis provision in Montgomeryshire.

I thought very carefully about becoming involved in a high-profile way because most of my friends and colleagues in the Kidney Wales Foundation take a different view from me. I am not in favour of presumed consent, whereas nearly all of them are. In my view, the way forward is to ensure that everyone knows about the issue so that people’s views are known when they die. Having a public debate is in itself a very good thing to help to achieve the objectives I want.

I think we all agree about the need to increase the availability of organ donors—those who are in favour of presumed consent and those who want to retain the informed consent system. The difference is that I do not believe that presumed consent will deliver an increase in organs for transplant. The evidence tells me that it makes no difference. The reason I sought this debate is that the Government in Wales have proposed to opt for presumed consent, which would inevitably have an impact on the rest of the United Kingdom and makes this a very proper debate for this Chamber.

I must make it clear that my opposition to presumed consent has nothing to do with ethics or morality, though I believe that there is a strong ethical case for opposition to it. Others, including the Archbishop of Wales, have articulated the ethical arguments much better than I can. It cannot be right to interpret the absence of an objection as a considered declaration of support. They cannot be seen as the same thing. Changing the system from an act of giving by the citizen to an act of taking by the state is a genuine ethical consideration, but my opposition to presumed consent is based not on ethics but on efficacy. There is simply no firm evidence that it will deliver any more organs for transplant.

In the final years of the previous Labour Government, the then Prime Minister, the right hon. Member for Kirkcaldy and Cowdenbeath (Mr Brown), began advocating presumed consent, as some hon. Members here may remember. He established a Department of Health organ donation taskforce. I believe that the chief medical officer at the time also supported a change to presumed consent. The taskforce was instructed to examine presumed consent in detail and to provide a report for the Government. The taskforce consisted of a large committee of specialists under the chairmanship of Dame Elisabeth Buggins, with several sub-committees to consider particular issues. Its report, published in 2008, made it absolutely clear that presumed consent was unlikely to increase organ donation rates in the UK and risked diverting substantial resources—it would cost £45 million to establish and several million pounds a year thereafter—from effective solutions. The report is the most comprehensive analysis of presumed consent ever carried out. It runs to several hundred pages.

[Jonathan Evans (Cardiff North) (Con)]

I have a copy of the Buggins report here. Did my hon. Friend take from his reading of it the fact that at the beginning of the process many of the people who were part of the taskforce were strongly in favour of presumed consent, and it was as a result of the detailed work undertaken that their viewpoint came to be changed? That was a crucial part of what emerged from the report and is highlighted in the conclusions.

[Glyn Davies]

My hon. Friend makes a good point. Because of the brief that the British Medical Association has circulated to Members, I want to quote the report’s conclusions so that we know what the taskforce actually said. One of the main recommendations states:

“The Taskforce’s members came to this review of presumed consent with an open mind, with many sympathetic”

to presumed consent. It went on:

“the more the Taskforce examined the evidence, the less obvious the benefit, and the more multifaceted and multidimensional the issue of increasing donor numbers was revealed to be…The Taskforce reached a clear consensus…that an opt out system should not be introduced”

as it could impact negatively on organ donation.

I was quite shocked to receive the BMA parliamentary brief because it sets out without the slightest doubt to give the impression that the taskforce recommended the opposite of what it did recommend. That is verging on a lack of professionalism. I have huge respect for the BMA and I was very disappointed to receive its parliamentary brief. It will seriously damage my confidence in such briefs in the future, whereas I depended on them in the past.

[Nia Griffith (Llanelli) (Lab)]

When someone dies it can be very difficult for doctors to talk about organ donation at that time. Does the hon. Gentleman agree that what we need is a huge drive to get families to talk about consent well in advance? We must be honest and acknowledge that organs that are fresh from healthy bodies are the most desired, and it is often the tragic deaths that lead to organ donation. We need to get as many people as possible signed up, other than those with strong religious objections. If people are signed up, doctors can have an informed discussion with them.

[Glyn Davies]

I absolutely agree, but I do not necessarily agree with having a list identifying people. I hope to cover that point. Having people’s views identified outside the traumatic circumstances that surround a death is absolutely key if we are to increase the number of organ donations in this country. That is what the evidence in other countries tells us.

When the taskforce was set up, the Prime Minister of the day expected it to support a transplant revolution, but of course it did not. A similar conclusion was arrived at by a cross-party group of Assembly Members who looked at the same issue. The Members I talked to went into that committee expecting to support presumed consent, but they said in the Assembly that it should not be presumed. They did not think it would deliver the increase in organ donation levels that was generally anticipated.

The second report of the organ donation taskforce in 20008 recommended an improvement in transplant co-ordination, and that is being implemented. The number of organ donors in the UK has risen from just over 800 in 2008 to more than 1,000 last year. That is an extraordinary and dramatic improvement that has saved hundreds of lives. I have searched pretty hard, and the evidence I found is that the way forward is to look at the problem logically and in depth, conduct serious research and then take well-considered action.

Many people support presumed consent because they intuitively feel that it must make a difference. Opinion polls show support, and it is not surprising that they do. When people are going around saying that the change to presumed consent will increase the number of organs available, others will automatically say that they are in favour, but the reality is not what they think. There is a misconception that, if a citizen does not put their name on a centralised, opt-out register, their organs can be used for transplantation. This is a half-consent system, and it is not the presumed consent system that is being proposed. With soft opt-out, or presumed consent with safeguards—these are the phrases used—the actual decision to donate still rests with potential donor’s family, as happens under the current system. The key issue—the point raised earlier by my hon. Friend the Member for Cardiff North (Mr Evans)—is that the donor’s wishes are known by his or her next of kin.

It is always dangerous to draw conclusions from international examples but, for many years, Spain was presented by those who support presumed consent as proof of the effectiveness of that system. Since the late 1980s, Spain has had the best rate of organ donation in the world and has rightly been recognised as a model for other countries. Because Spain legalised presumed consent in 1979, it has been assumed that this played a key part in its success. However, the 1979 legislation to introduce presumed consent had no impact whatsoever on Spanish donation rates. Key organisational changes introduced 10 years later, in 1989, delivered the success of which Spain is so rightly proud. Spain does not have, and has never had, an opt-out register.

The director of the Spanish organ donation body, Dr Rafael Matesanz, has said that the 1979 legislation is dormant and plays no role in Spain’s outstanding organ donation rates, but this fact does not deter the supporters of presumed consent. They now ignore Spain, citing cultural differences to explain why Spain is not a good example to follow. They also ignore the fact that the United States has one of the best organ donation rates in the world, despite there being no presumed consent there. In fact, civil liberties issues in the States would almost certainly prevent presumed consent being introduced there.

The focus now has moved to Belgium and to studies performed in Belgium 25 years ago, between 1984 and 1987. I tried to discover what happened, because I want to see more organs donated. If a system works, and there is evidence to show that it works, it is important that we study to such examples, so I have gone to a lot of trouble to find out what happened in Belgium.

Belgium introduced presumed consent legislation in 1986. The key result was that the rate of kidney transplantation in Belgium rose from 200 per annum in 1984-85 to 300 per annum in 1987. Again, under more detailed examination, the claim that this is the consequence of presumed consent just does not stand up to scrutiny. The results of these studies were published, as a page and a half meeting report, in 1990, by L Roels and co-workers, Transplantation Proceedings, volume 22, pages 2078 to 2079. The authors state clearly that the presumed consent legislation

“was consolidated by a nationwide information campaign about the benefits of organ donation…and is being maintained by continuous efforts to inform healthcare professionals about the modalities of organ procurement procedures.”

More importantly—crucially—the authors go on to say:

“Whereas before 1986 most smaller non-university hospitals were reluctant to participate in organ donation activities, by lack of any legal security in the absences of an adequate legislation. The majority of organs harvested” —

I do not like that word; I prefer “donated” —

“during the last 3 years were performed in this particular group of hospitals.”

Presumed consent was clearly a major factor in increasing organ donation in Belgium in the 1980s, but it is irrelevant to the current position in the UK because the legal certainties have never been an issue. It may have had some influence in Belgium but it is clear that Belgium is a very weak example of evidence on which to base a major change in UK policy.

[Kevin Brennan (Cardiff West) (Lab)]

As I understand his argument, the hon. Gentlemen is saying that in other countries other measures have worked to increase the level of donation, but he also seemed to be arguing that presumed consent would make matters worse, and reduce the number of organs donated. Can he explain how that mechanism would work?

[Glyn Davies]

I thank the hon. Gentleman for that intervention, because I would not want there to be a misunderstanding. I gave a direct quote from the organ donation taskforce set up by the previous Government, which said that there was no evidence of an increase, and indeed some danger that there might be a negative effect. I used that quote as a challenge to those who are suggesting that the taskforce report shows positive support. I did not suggest that presumed consent will decrease the level of donation.

[Susan Elan Jones (Clwyd South) (Lab)]

It strikes me that the hon. Gentleman is saying that we have a choice – either presumed consent and no awareness-raising, or awareness-raising in the hope that that will generate more organ donation. From our nation of Wales, in the UK, we know that one person a week dies because they cannot have a transplant. I was on the Welsh radio programme “Dau o’r Bae” recently when one of the hon. Gentleman’s colleagues, the Rev. Felix Aubel, was adamantly in favour of presumed consent, and felt that there were very few ethical considerations against. There is quite a diversity of views, but I would contend that there is not the polarity that the hon. Gentleman suggests.

[Glyn Davies]

I thank the hon. Lady for her contribution, but I have not thought of this as being in any way a political issue. I know that there will be members of my party who will take a different view. For me, this is an issue purely outside party politics.

[Paul Flynn (Newport West) (Lab)]

Of the people who died last year waiting for organs, 50 died in Wales, and the evidence from the world experience is that the system being proposed by the Welsh Assembly will reduce that number of deaths. The hon. Gentleman has produced nothing to suggest that that is not the case.

[Glyn Davies]

I thank the hon. Gentleman for his intervention, but I simply do not accept that. The evidence actually shows the opposite of what he has just said, and he is ignoring that evidence. This is an issue of such importance to me—probably the most important issue to me since I have been a Member of Parliament—that I have looked carefully at the evidence. I do not want to be advocating a course of action that in some way negates that evidence, and I do not think that that is what I have been doing.

[Mr Mark Williams (Ceredigion) (LD)]

The hon. Gentlemen has been very careful. He has cited the experience of Belgium and Spain. Would he also cite the experience of the survey held by the Kidney Wales Foundation, looking at 22 different countries, comparing the rates of donation and concluding that presumed consent would increase the rate of donation by up to 30%?

[Glyn Davies]

I thank the hon. Gentleman for that intervention. I referred to Spain because that is the example that all those who seek presumed consent have quoted for many years. I then referred to Belgium because when it was shown that the evidence from Spain did not support that argument, the example then used was Belgium. If there is evidence from 22 more countries, then I will have to see the results from them as well. I just do not accept that the international evidence supports the move to presumed consent at all.

[Jonathan Evans]

I would like to explore this issue for slightly longer. The evidence indicates that what is important is the awareness, not the presumed consent. The Minister, on a point that I hope to raise with her later, wrote to me to indicate that awareness-raising, from just undertaking the taskforce report, has resulted in donation rates increasing by 28% over the last three years. Nobody could say that that is because of the system – it is because of communication and information.

[Glyn Davies]

I am hoping to come to this issue if I have time at the end of my speech. It is a crucial issue. I value the help that the British Medical Association has given me over the years. However, the Parliamentary brief from the BMA, which I referred to before, shocked me a bit; so I have gone to some trouble to understand its position. The BMA agrees with the move to presumed consent, and has done for many years. The position of the BMA is of great interest. It has been a vocal supporter of presumed consent since it adopted the policy in 1998, long before the report of the organ donation taskforce, which was a comprehensive study into the issue.

The BMA’s current position was overwhelmingly endorsed a few months ago at its annual representatives meeting, a very important meeting which was held in Cardiff and attended by hundreds of doctors representing regional groups throughout the United Kingdom and some special interest groups. Many dozens of motions were discussed over three days and votes are taken. A vote of 51% of those in the hall makes what is being discussed policy for the BMA. It seems scarcely credible that an important organisation can make policy on a complex issue in this way—as a sort of public speaking competition, rather than on the basis of detailed research. I do not accept that the BMA’s position on presumed consent can be treated seriously until it reforms the way it makes policy on complex issues. Given the influence of the BMA on public opinion, and that patients’ lives are at stake, there is a powerful moral obligation for it to undertake substantial research into this position before it continues to carry forward an issue that in my view damages the cause that it purportedly supports.

What is the way forward for patients who are at the heart of the debate? I want to come to the positive way forward. We know that the rate of organ donation is influenced by three crucial factors. The first is the number of potential donors. With rare exceptions, potential donors are comatose patients on life support machines in intensive care units. Inevitably, the level of intensive care provision is a crucial aspect of organ donation, and it is relatively poor in the United Kingdom.

That is one factor. Identification of all potential donors is another. Every patient who is a potential donor should be given the opportunity to become a donor, by early identification and discussion with his or her family. The Spanish have an extensive system of transplant co-ordinators, involving mainly part-time intensive care physicians. There is a lesson there for the UK.

Consent from the patient’s family is also key. This is influenced by background knowledge of transplantation and organ donation; the professionalism of timing, as to when we approach the family; trust in the medical profession and knowledge of their loved one’s wishes. Spain has a national training programme for its co-ordinators and a 24-hour information helpline open to the press and public, and places a high priority on public relations.

Consent cannot be legislated for. In 1990, the refusal rates in the UK and in Spain were the same, at about 40%. Over the last 20 years, the refusal rate in the UK has stayed roughly the same. In Spain, it has fallen gradually to the current level of 15%. There is a dramatic difference in what has happened in Spain, as a result of the systems outside presumed consent. That is the example that we should be following.

The second report of the organ donation taskforce recommended improvement in transplant co-ordination, which is being implemented. This is where the numbers I referred to earlier become apparent: the huge 25% rise in the UK and the 60% rise in Wales. It is a fantastic achievement. This is the approach we should be taking forward, which leads me to the final part of my speech this morning.

[Jessica Morden (Newport East) (Lab)]

Does the hon. Gentleman agree that there is a particular problem with organ donation in black and minority ethnic communities? What does he think we ought to do, if we are not aiming for a soft opt-out, to raise the profile of organ donation to tackle health inequalities in these communities?

[Glyn Davies]

The figures that I have seen show that the refusal rate in those communities is much higher in Britain. The rate of allowing organs to be donated by the next of kin is actually reducing among the non-BME population in Britain. So there is a lot of work. I do not know the answer to that. I do not want to make suggestions that I have not researched. I am trying to stick to the research, and I have not done research into that, although it is clearly an issue. It was a specific part of a debate here about two months ago and it is an issue we must tackle.

Finally, those of us who disagree with the proposals being put forward by the Welsh Government and advocated by my friends at Kidney Wales Foundation and the BMA have a responsibility to engage seriously with what is a genuine attempt to increase the availability of organs for transplant. It is a worthy objective. It is accompanied by a commitment to invest considerable sums of public money to achieve it. It has led to a lot of debate already, particularly in Wales, to this debate today, and will lead to much more. Many hon. Members are interested in the debate. If Wales and the Welsh Government seek to introduce the legislation, there will be huge debate across the UK. The debate itself is hugely helpful.

The final point I want to make this morning is that we should build on what is so obviously working. There is currently a national transplant week and a national donor day. However, these do not impinge as much on the national consciousness as we would like them to in the UK. I admit that I did not know that they occurred. If part of the extensive resources which would be used to implement the presumed consent legislation were to be used to create a national donor and transplantation day in Wales, what a difference that could make. It could have real impact. The resources could be used to celebrate the donors and their families of the preceding year on television, radio and the newspapers. The success stories of the recipients of new organs who are living a full life would be inspirational as examples and would help discussion about this issue, so that next of kin would know what their families’ wishes were.

[Nia Griffith]

Would the hon. Gentleman consider the advantages of trying to have specific points in people’s lives when they are asked about organ donation, such as when they get their driving licence or their national insurance number, or something like that, so that there is a methodical way of asking people to sign up?

[Glyn Davies]

I thank the hon. Lady for raising the point. That is not directly related to the debate today, but the point raised would support and strengthen the current system of an opt-in card, and it is a good idea. I have thought about it a lot and most people would accept that that is a reasonable way forward. It asks people their opinion and requires them to think about the issue. As long as we can extend that—having them tell their next of kin what their position is—it could be very successful.

We could learn from what has happened in Spain: Spain is the most successful country in the world. We also could establish a 24-hour information telephone line, with many more lines available on the national organ donor and transplantation day, if it were set up. On that day the people of Wales could be encouraged at every opportunity to tell their loved ones and their next of kin what their wishes are regarding organ donation. Husbands, wives and children will always be asked their permission. If you are ever unfortunate enough to be a potential donor, you need to have your next of kin know your wishes, so that they will be implemented. Telling them your wishes is much simpler, hugely cheaper, more effective and far more flexible than presumed consent legislation. Establishing a national database is expensive; overseas experience suggests that only 1% or perhaps 2% of the population are likely to use it. We know that it is more probably some 10% of people who do not want their organs to be donated; those are the figures we get—that about 90% of people are content.

This is a poor substitute. We all need more organs available for transplant. There is no dispute about that—it is a worthy objective that nearly everybody signs up to. Building on the success that we are achieving, involvement in a transplant co-ordination system is the way to go. Building on the evidence and on our experience, we know that that is what works; not creating a bureaucratic, superficially attractive, presumed consent system that simply will not deliver what we all want.

[Several hon. Members]

rose—

--- Later in debate ---

[Paul Flynn (Newport West) (Lab)]

This debate reinforces the view that Assembly Members never actually leave the Assembly, but continue their debates here in Westminster. This morning’s debate is not for us. The Government have 400 commitments in the coalition agreement; if they have 401 commitments then there is even less chance that they will deliver on this. There is no likelihood of change.

[Glyn Davies]

I reassure the hon. Member that this issue was never raised during the eight years I served as a member of the Welsh Assembly.

[Paul Flynn]

It is now a live issue in the Assembly. We are not the Assembly, we are a British Parliament, and I question whether this is an issue of primary concern. Of course we should talk about it, but sadly any possibility of reform is remote in this Parliament, although it is a live issue in Wales. This debate has been called in order to influence the debate in Wales and it is questionable whether it is a legitimate use of parliamentary time.

--- Later in debate ---

[Mr Williams]

The hon. Member for Newport West (Paul Flynn) also spoke with characteristic passion, and he spoke with passion about constituents, which is an important point to make. Another important point to acknowledge is that this is not a partisan issue. I happen to support the stance taken by the Welsh Assembly Government. It is not a Government that my party is part of, but I support the initiative of both Health Ministers in the Assembly, who happen to be Labour Members.

I will briefly explore the Assembly Government case and endorse the work of the British Medical Association. I will also highlight the work of the Kidney Wales Foundation, the British Heart Foundation, Diabetes UK Wales, the British Lung Foundation and the Kidney Welsh Patients Association.

[Glyn Davies]

Will the hon. Gentleman give way?

--- Later in debate ---

[Kevin Brennan (Cardiff West) (Lab)]

This is a political issue. It may not be a purely party political issue, but it is a political issue, because ultimately it is decided by politicians. If a similar proposal were introduced for other parts of the United Kingdom in this House, it would probably be whipped by the Government, who I imagine would take a political position on the issue. That may or may not be the case, but whether or not the issue is party political, it is political because it is about life-and-death matters affecting our constituents, matters that are ultimately decided by politicians. That is our duty and we should not give politics a dirty name by saying it is not a political issue, because politics is important—often, it is a life-and-death matter—and this is one example.

I listened carefully to the arguments of the hon. Member for Montgomeryshire (Glyn Davies). I absolutely accept that he is entirely sincere in making those arguments and that he has considered the matter very seriously. I know that, through a close friend, he has personal experience of the issues involved. I also know of his work with the Kidney Wales Foundation, a charity that is located in my constituency and has done such sterling work to move the issue up the agenda in Wales and to help develop the proposal brought forward by the Welsh Assembly Government.

However, I struggle to understand the logic of the hon. Gentleman’s position. He appeared to be saying something with which we can all agree—that increasing the levels of organ donation will not simply happen through a proposal such as soft presumed consent and that other things could and should be done to increase organ donation. As he rightly said, the very fact that the previous Prime Minister raised this matter from the top and generated a taskforce and a debate has helped to improve organ donation, in the same way that the Alder Hey scandal had the opposite effect on rates of organ donation in the past decade.

There are things that can be done. One study cited in the science section of the Library’s note, which hon. Members may have read, stated that the four main factors for high donation rates are “an opt-out policy”, which we are here to debate, and

“a large number of transplant centres…a high percentage of the population enrolled in university education…and a high percentage of Roman Catholics”.

That may explain the sanctimonious hyperbole of the Archbishop of Wales on the issue. He may want to reconsider the position that he has taken and to consult some of his ecumenical colleagues in other parts of the Christian faith.

The reason why I struggle with the logic of the hon. Member for Montgomeryshire is that he said that his objection was not ethical. We do not therefore have to deal with the issue of whether the proposal is an imposition by the state, which should not in any way presume anything about what should happen to the organs of someone who has died. He said at the outset of the debate that his objection was not on such grounds; he said that he wanted to cite the evidence. When I asked him whether he thought such a soft organ donation proposal would make matters worse, he said that a line in the taskforce report stated that that was a possibility, but that that was not his position and that he was not arguing that a proposal for soft organ donation would make matters worse. At the very least, all the proposal would do, according to his own argument, is make things no better. Yet he accepts that, by raising the debate and the issue, organ donation rates are likely to increase.

My argument is that the proposal is not a significant imposition on the individual human rights of people, because it is soft organ donation. In practice, what would happen is that, when an organ becomes available, it will be presumed that the donor had consented but there is still the safeguard that the relatives of that donor have to be consulted. All that would change would be the nature of the question. It would no longer be, “Your loved one did not carry a donor card and did not indicate consent before this misfortune befell them, would you agree to their organs being donated?” Instead, the question would be, “As you know, in this jurisdiction it is presumed that consent is given unless somebody opts out, and therefore we intend to proceed unless you decide to veto that process.” That is the difference. In my view, logic tells us that, in those circumstances, it is likely that more organs will be donated. Even if that was not the case, and even if, as has been said, it made no difference whatever, are we not right to try?

I believe that the proposal will be a success, and we should try it. This is the advantage of devolution: it is possible for the proposal to be tried in one part of the United Kingdom just as the smoking ban was tried despite massive objections from all sorts of people. That proved a huge success and the ban was adopted in other parts of the United Kingdom. I think the same will happen in this instance.

[Glyn Davies]

I accepted in my speech that the proposal in Wales may have triggered my debate in some way, but this is an issue for the United Kingdom. We have all spoken about a situation that needs to be improved, and that needs to happen across the United Kingdom. That is what today’s debate is about.

[Kevin Brennan]

Indeed, and I accept that. As I just said, I believe that the proposal in Wales will, eventually, lead to an improvement right across the United Kingdom.

On the constitutional point, the Welsh Government have taken legal advice and believe that they have the necessary jurisdiction to undertake the reform. If the United Kingdom Government and their legal advisers do not believe that to be the case, how should the Welsh Government react? I will tell you, Mr Crausby: they should react by making sure that they make any necessary changes to ensure that it is absolutely clear that the Welsh Government have the necessary jurisdiction to make that reform. Otherwise, we are heading for an unnecessary constitutional crisis. I hope that the Under-Secretary of State for Health will make the issue clear when she replies to the debate.

Social Care Funding

Glyn Davies Excerpts

Thursday 10th November 2011 Westminster Hall

[Sarah Newton]

My hon. Friend makes an excellent point about the fact that there is inconsistency across the country in the quality and type of care available. The best care, which some people experience, should be available for everyone. We all want that for our constituents. As people in their 50s grow older, they will have far greater demands, which will be different from those of the generation now in their 90s or over 100. They will be looking to technology and innovation to come up with a range of services that will support them in leading life to the full, and in living healthily and productively as part of society, for as long as possible, so I agree with my hon. Friend’s point.

We know from our debate in this Chamber last week on the quality of care that elderly people experience in some parts of the NHS and from other care providers that the vast majority of people of all ages want elderly people and people with disabilities to be shown far greater kindness and respect. The commission says that the main failings of the current system are that it is confusing, is perceived to be unfair and is unsustainable.

[Glyn Davies (Montgomeryshire) (Con)]

I thank my hon. Friend for allowing me to intervene, particularly as I have indicated that, unfortunately, I cannot stay for the whole debate, which I had wanted to do. I hope that we can emphasise the point that as people are living much longer, it is an exponential curve. The incidence of dementia and Parkinson’s disease means that the need is far greater than a simple look at the graph would suggest. The cost is going to just take off. We need a Government policy that deals with that and recognises the huge changes that we will face.

[Sarah Newton]

My hon. Friend makes a very good point, reminding us that people are living much longer, because the causes of mortality that prevented people from living so long in the past—especially cardiovascular disease and some cancers—are now more survivable, so people suffer from other conditions, which are sometimes far more complex to live with and to treat, especially diseases such as dementia and Parkinson’s. The fact that people are living well into their 80s and 90s and beyond 100 presents new challenges for the NHS and a range of other services—indeed, for society as a whole—so my hon. Friend makes a very good point.

The commission goes on to say that most people are unable to plan ahead to meet their future care costs. Assessment processes are unclear. Eligibility varies according to where people live, and there is no portability if people move between local authorities. The provision of information and advice is poor, and services often fail to join up. All of that means that people and their families often do not have a good experience.

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[Barbara Keeley (Worsley and Eccles South) (Lab)]

I congratulate the hon. Member for Truro and Falmouth (Sarah Newton) on securing this debate and on the way in which she opened it. I am sure that we all agree with her final comment about caring for those who served in and lived through the second world war. It is important that we not only debate social care here, but ensure that a much wider debate on the current and future funding of social care takes place across the country.

The Dilnot commission was tasked with making recommendations on how to achieve an affordable and sustainable funding system for care and support. No one here today will be able to go into too much detail about the report, but I should like to talk about some of the things that the report confirmed, including things that have been repeatedly said about social care for years. These are some of the key points. The current adult social care funding system in England is not fit for purpose and needs urgent and lasting reform. The current system is unfair and unsustainable. Without reform, it will deliver ever poorer outcomes for individuals and families. The funding of social care is inadequate—people are not receiving the care and support that they need. Indeed, there is an unacceptable level of variation in eligibility for services; we have 152 different adult social care systems. For a number of years, care has been rationed through the fair access to care system, but that system is now seen to lack transparency, consistency and clarity. Assessments for care are not portable. Given the variations in eligibility, the problem causes frustration and worse than that when people needing care have to move to a new local authority.

The provision of information and advice is poor quality and very limited. People struggle to find financial information and advice, and there is little information and advice for carers. While there are significant overlaps between funding streams for housing, benefits, the NHS and social care, the systems that administer them are not joined up, which means that we do not have integration, that we have poor co-ordination and that people have to suffer multiple assessments. Perhaps worst of all—Andrew Dilnot rightly drew attention to this—the system is so complex and difficult to understand that most people do not plan for or think about the future provision of care that they may need. I am sure that many right hon. and hon. Members will have had cases of constituents who thought that social care was free and were shocked when they discovered that it is not and that they will be faced with paying the costs of care.

All those points are a disturbing appraisal of the system of care and support on which millions of people depend because they are frail, elderly or have a disability or long-term condition. We have known about all those problems for some time and I have spoken out on these issues since I came into the House in 2005, with a variety of different people filling the role that the Minister now occupies.

In 2009 and after much consultation, my party brought forward plans to establish a national care service. Given the pressing needs of those people with the greatest care needs, we also passed the Personal Care at Home Act 2010 to provide free personal care at home for the 400,000 people with the greatest care needs. It was not a perfect solution, and I do not think that anyone thought that it was, but it would have provided financial peace of mind to 400,000 individuals and their families.

My party’s proposals were treated as political footballs during the general election campaign. There were some regrettable political attacks on the proposals for social care, which was unfortunate.

[Glyn Davies]

Does the hon. Lady not accept that the way in which those proposals were treated before the last general election was massively damaging? I was not a Member of Parliament then, but I was ashamed of some of the language that I heard coming out of the House. It is wrong to attribute the matter to any particular party. If we are going to deal with this issue properly, we have to set aside that sort of language because it serves no purpose and damages our reputation with the public.

[Barbara Keeley]

Indeed. As ever with interventions, that was almost the next thing that I was going to say. I was going to say that the whole incident was unfortunate. I am chair of the all-party group on social care and I want to see a consensus built in this Parliament to take forward a solution to the funding of care and support, so I very much agree with the hon. Gentleman.

We must set our minds to the fact that, this time, the debate must be different. We need to build consensus across the parties and across the country. The need for a solution is more pressing than ever. We know that requests for support are increasing. In 2009-10, there were 2.1 million contacts from new clients to social services, an increase of 4% from 2008-09 and of 8% from 2004-05. We also know that many hundreds of thousands of people never have their needs assessed.

At the Health Committee this week, I asked a question of the president of the Association of Directors of Adult Social Services about levels of unmet need. He seemed unable to quantify it. How can we plan for provision of social care if we do not know the levels of unmet need? Research by Age UK showed that 82% of local authorities now provide care only to those with “substantial” or “critical” needs. I am glad to say—I think that the hon. Member for Truro and Falmouth also has a council in her constituency that is perhaps doing a bit better—that my own local authority, Salford city council, is among the 18% of councils in the country that still provide care for those with “moderate” needs.

I welcome the commitment of my Labour council colleagues to try to meet the needs of the more vulnerable members in our communities. I understand how difficult the position is, but I value all those councils that are rightly taking the decision to protect social care. We know that vulnerable people in other areas are not so fortunate. Recent studies by the Office for National Statistics and the Economic and Social Research Council Centre for Population Change have looked at the issue of unmet need for social care. The centre concludes that, regardless of the data source used

“there is significant unmet need for care among older people.”

It gives the example of a group of people aged over 65 who needed help with bathing. Of that group, 66% were not receiving any help with bathing. That example was based on 2008 data. Since 2008, we have had front-loaded cuts to local authority budgets, which will have caused greater levels of unmet need.

My hon. Friend the Member for Lewisham East (Heidi Alexander) referred to local authority budget cuts and now the Association of Directors of Adult Social Services has reported £1 billion of cuts to social care budgets in 2010-11, with a similar or greater level of cuts being predicted for next year. What impact those cuts will have is of concern to us in Parliament.

The NHS Confederation reminds us that when people’s needs for social care are not met, they turn to the NHS. The NHS Confederation says that that will mean increasing numbers of unscheduled and emergency admissions to hospital, as well as delayed discharges from hospital. Indeed, recent figures from the Department of Health show that the number of delayed discharges from hospital was 11% higher in September and October this year than in the same two months in 2010. Clearly, delaying discharges from hospital is an expensive solution to the problem of inadequate social care. Indeed, the NHS Confederation says that, without reform, the NHS will ultimately buckle under the pressure of demand from patients who need social care.

The problem of unmet need is getting worse and of course much of the extra burden will fall on unpaid family carers, many of whom are already overburdened. I will cite two examples of unpaid family carers that Carers UK has told me about.

One is Eric from Lancashire, who has cared for his wife, Diane, for 20 years. She has multiple health conditions and needs constant support. Eric had to give up work 15 years ago to care for her full-time. When his local council provided 10 hours of support each week, Eric could get out of the house, have some time for himself, do the shopping and even do some volunteering with local charities. Earlier this year, however, council cuts meant that Eric and Diane’s care package was cut in half, despite the fact that Diane’s health has not improved. Eric is worried about his own health, because he needs to use all of the time that he has free from caring for Diane, which is now only five hours each week, to run basic errands, and he no longer has any time for himself. We can all imagine how difficult that must be.

The second example is of an unpaid family carer who is in perhaps an even more difficult situation. Joyce, aged 58, cares for her husband Robert, who is 71 and has dementia. She gave up work as an accountant four years ago to care for Robert full-time. With their savings and Robert’s military pension, they are over the means test threshold for local authority support. Robert is doubly incontinent, and easily confused and distressed, so he cannot be left alone. Just to go to the supermarket, Joyce has to pay £12 an hour for a sitter. For longer breaks, she has to pay £18 an hour for specialist care. Paying for a day of replacement care or for a weekend away means that costs escalate, because Joyce has to pay for multiple care workers and even a nurse. It is important to note that the charges that Joyce is paying have risen by 20% during the past four years. Joyce gave up work to care for Robert and her only income now is from the carer’s allowance of £55 a week. She knows that residential care, when Robert needs it, will cost thousands of pounds a month, which makes her very fearful of the future.

I said earlier, and I think that it is the case, that there is clear agreement that our social care system is no longer fit for purpose and that reform of the funding system is overdue. However, the important point is that none of the people I have referred to in those examples would be helped with their current issues by the Dilnot report’s recommendations, because they offer little for overburdened family carers who are caring for people at home.

A report by the Strategic Society Centre suggests that the “capped cost” model recommended by Dilnot will pose a dilemma to policy makers and could create resentment among family carers. Carers such as Joyce save the state many thousands of pounds by providing informal care. However, when the person they care for enters residential care, they will still be liable for the first £35,000 of care costs. That does not seem fair.

The recommendations of the Dilnot commission are an important step on the path to reform, but we must look widely at what is needed. We must focus on the gap in funding, which exists under the current system as well as in the projections of future funding needs. We must also have the widest possible debate on the options that are available. It seems that there is a problem in getting a debate on these issues that is wide enough to build the consensus that Members from all parties have talked about in Westminster Hall today.

I know that the Minister who is here today is involved in an engagement exercise and that leaders from the care and support community are helping to lead those discussions. However, I want to ask whether and how we can debate this issue more widely. There are 6.4 million carers who have a stake in the issue. There are 1.6 million staff who work in the provision of social care, which is more than the number of staff in the NHS. We should perhaps not be surprised that those people find it harder to be in contact with MPs and Ministers to give their views. They do not have the time in their busy and pressed lives to go along to consultation events; it is very difficult for them to do so. It says much about the isolation of carers and of the staff who work with people who need care that they have few opportunities to get together and put forward their views and comments, so it is our job to find out about that, and to talk to and build a consensus with those people.

After the launch of the Dilnot report, the all-party group on social care asked how the public debate on future funding of social care would develop. We asked a Health Minister—it was Earl Howe, as the Minister who is here today was unable to attend that meeting—whether Andrew Dilnot and the other commissioners could continue to play a role, and whether the secretariat for the commission would continue.

In July this year, I, as the chair of the all-party group on social care, and the chairs of 11 other all-party groups associated with social care wrote to the Prime Minister, the Health Secretary and the Minister with responsibility for social care, who is here today. The MPs and peers in those all-party groups stressed the need for action. We asked the Government to accept the urgent need for reform, but we also asked them to provide resources to support meetings across the country to promote the debate on social care, facilitated by members of the Care and Support Alliance, which is the umbrella group of more than 50 charities that represent older people, disabled people and those with long-term health conditions, as well as their families.

As we have already heard today, the future of social care is of national importance and it should involve the millions of people who depend on social care and the staff who provide care services. Can the Minister tell us what resources the Government will allocate to promote the debate on social care, including providing support to the members of the Care and Support Alliance to run meetings and take the debate forward?

Finally, can the Minister update us on the level of commitment that he believes exists in the Government and more widely to take forward the issues that have been raised today, and to take action to deliver what we said in our letter to the Prime Minister and others we want to see, which is a fairer system of charging for care that is matched by a financial settlement for local authorities so that they can deliver that fairer system?

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[Neil Carmichael]

That is very kind. [Interruption.] Hon. Members are all very optimistic.

[Glyn Davies]

It might be a good point to throw into the debate that, a fortnight ago, I visited a woman who was having her 108th birthday. The interesting thing about her—I think it contributed to her longevity—was that she had been a member of the Conservative association ever since she was allowed to join in 1928.

[Neil Carmichael]

Well, we certainly have experience in our Conservative association back at home. An interesting thing about my constituency is that I came across somebody who was 106. She wanted to make a complaint and she came up to me at some speed. I did not think it was anything to do with the care she was getting, and it was not: she had received a birthday card from Her Majesty the Queen every year for the past six years, but unfortunately she had received the same one each year, and she wanted a different one.

As that story shows, we have an ageing population, and that brings challenges, of which dementia is obviously one. More and more people are experiencing dementia, not just because they have it but because a family member has, and that can be just as challenging. We need to prepare the ground because an increasing number of people have dementia.

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[Neil Carmichael]

This is certainly becoming a surprisingly wide-ranging debate. We have thrashed out the issue of EMA very carefully and thoroughly in the House of Commons—indeed, those of us on the Education Committee produced a useful report on the subject—but the Government have to think about wider issues in connection with post-16 education and so on. However, that is a separate issue; the important point here is that people who are going to school are carers, and I want the Department of Health to register that.

Another important aspect is the number of people with Parkinson’s. That problem is increasing all the time, and it is right that we focus our attention on it. The reason I mention such difficulties—not to the exclusion of others—is that it is important that we think carefully about personalised budgets so that people get tailor-made provision that they are happy with, and so that we join the NHS up with social care. I made that point in an intervention on my hon. Friend the Member for Truro and Falmouth but I want to repeat it, because part of the answer is to ensure that fewer people end up in hospital, and we can do that by ensuring that the social care structure spots problems before they become serious or overwhelming and prevents problems from starting in the first place. If the social care system dovetails completely with the NHS system and is accessible and transparent, people who need care, and families with members who require care, will feel they are being properly listened to.

[Glyn Davies]

Let me make a point in the form of a question. It touches on several of the issues that my hon. Friend has just mentioned, and particularly on Parkinson’s disease. Does he share my concern that once people enter a care home, there is not the same awareness of the need to look for dementia or Parkinson’s disease as there is outside? There is not the same awareness of the onset of those diseases, because people are deemed just to be elderly, when in fact they are suffering from an illness.