(8 years, 4 months ago)
Lords ChamberMy Lords, is it not unworthy to describe the Secretary of State for Health as being anything other than unequivocally committed to improving patient safety in the NHS? Consistently and throughout his time as Secretary of State, this has been a priority of his with total dedication, and I much regret that anybody should question that. However, is it not equally deplorable that junior doctors, who are respected and loved by the public and are on a step on their career towards consultant posts, should take an action that will undermine the respect and confidence in which doctors have long been held? My noble friend rightly pointed out the many issues concerned with junior doctor training, but extra money for working on a Saturday, which junior doctors have always had to do, as have those in many other professions, is not the reason now to jeopardise their reputation among the public.
I can confirm both those points. If the Secretary of State for Health was to fall under a bus tomorrow and somebody was writing his obituary, it is “patient safety” that would be written on his tombstone. That is the one big issue that he has consistently fought for ever since the problems at Mid Staffordshire were uncovered three years ago. Patient safety is his guiding star as Secretary of State for Health. I agree with my noble friend that it is tragic to see thousands of highly committed, highly intelligent and otherwise sensible young people going out on strike.
(9 years, 5 months ago)
Lords ChamberMy Lords, I warmly congratulate the noble Lord, Lord Turnberg, on securing this debate on a critically important subject and one in which I know he has taken a long-term interest. His comments are very much top-down; I am going to speak more from the bottom up. I think my noble friend Lord Howe has been quite an exceptional Health Minister, with a mixture of principle and pragmatism, and the UK Strategy for Rare Diseases is a remarkable document. It is a vision. It is not all in place in practice but the focus is on patient involvement, patient groups, empowering patients, ensuring patients are listened to, personal care plans, specialised clinical centres, education, training and research. These are the elements of where we hope to arrive.
I take two examples. In 1980, in my former professional life, I was incredibly proud to have an article printed in the Journal of Child Psychology and Psychiatry on the management of families with Huntington’s Chorea. It was a case study to illustrate some recommendations. With the psychiatrists at the Maudsley, where I worked, I had been working with a family affected by Huntington’s disease, as it is now called. They faced a very bleak future. There was little support and little identification. It is quite extraordinary the changes that have taken place over the years. Our basic thesis was that the children in a family always know if there is a secret and if you listen to them, they know what the problem is, and you have to talk to them about Huntington’s disease. Recently, the Huntington’s Disease Association, a magnificent patient group—of the kind that has developed in so many areas and quite remarkably in this country for so many conditions—has produced wonderful guidance about talking to children about Huntington’s disease.
On the MRC, we campaigned to get the human fertilisation legislation through. That was the first Bill that I handled as a Health Minister. Earlier this month, we heard that baby Amelia had been born, through IVF, free from Huntington’s disease. It is an incurable condition which parents have a 50% chance of handing on to their children. Therefore, that is an example of remarkable progress.
However, I want to draw my noble friend’s attention to a totally different condition: lymphangioleiomyomatosis —LAM. This is a wretched condition. Huntington’s disease affects 120 people in 1 million; LAM affects about seven in 1 million, so it is a very unusual condition. I want to talk about Amanda Simpson, a brave young woman from the Isle of Wight. She had chest problems and went to the hospital, where they told her that she had pigeon fancier’s disease, ME or emphysema. She was not happy. In fact, she was miserable because nobody had recognised her condition. Nobody knew what it was. She had two young children. Was it depression? Was it lethargy? However, she felt bad.
She then secured private funding to get a second opinion in Southampton and was referred to a centre in Nottingham, where LAM was identified. It is a pretty wretched chest condition creating cysts, which sometimes lead to non-malignant tumours on the kidney. The prognosis is poor. Fortunately, there is now a drug called sirolimus, which seems to address the problem. However, there are only 200 patients with this condition in the country, so Amanda has not had a care plan. LAM Action is a very small support group. I want to read from her comments. Having been referred to a specialist consultant from the Isle of Wight, she says:
“In a nutshell he told me I was a … hypochondriac and the problems were probably down to stress. I remember going home in tears feeling that no one believed me”.
After she went to the private specialist, she at last felt that she knew she had some reliable information. She continues:
“The next few days proved really challenging. I read up all I could and felt that in essence my world had come to an end. The prognosis wasn’t great and doing a self diagnosis on the internet threw up more questions than answers. I had extensive scarring of my lungs with cysts which were getting worse. My efficiency had fallen to nearly 40%, there was no known cure for the disease and I had two children under three. It all seemed so unfair. I had finally got my life on track and then this was thrown at me. The next six months proved really difficult. All the data I could get was not very helpful and there is a real shortage of any kind of support for”,
LAM. She goes on:
“The counsellors I did speak to seemed unable to grasp the situation and to all intensive purposes they were pretty useless”.
Finally, she was referred to Nottingham. I know of services provided at the Brompton hospital, the Heart Hospital and other specialist centres, but at Nottingham, with Professor Simon Johnson, professor of respiratory medicine, at last she had somebody who understood the whole subject. His wife, Jan, has set up LAM Action, creating a support group, and encouraging and promoting research. Amanda has been put on to the new drug, sirolimus, which only 30 people in the country are receiving, and it is having a beneficial effect on her. Even so, she has to get from the Isle of Wight to Nottingham, where she stays for three days at a time. There is no financial support. Now, her teeth are deteriorating, and she has to go to Winchester. Nobody understands all this.
In comparison, associated with cancer are Cancer Research UK, Macmillan Cancer Support and Marie Curie. People know and understand about cancer; they are sympathetic. Most people think that Amanda is a hypochondriac. They do not know what she is talking about and there is precious little sympathy or concern.
I want to make that contrast because of the change that I have seen in my lifetime in the approach to Huntington’s disease—its recognition and people’s understanding of it. There is a whole cohort of regional support advisers to help families and a very effective patient group recognised by the National Health Service. There is a clear pathway for this disease, and now there has even been a breakthrough with a family producing a child free of the affected gene. As the noble Lord said, there are 8,000 rare diseases, but I wanted to take this opportunity to identify the condition that had particularly come to my attention.
I want to say in passing that the new proposals for the tariff system and for the changes in commissioning for rare diseases need to be addressed in such a way that in time it will be possible for people suffering from LAM at least to get the recognition that is given to sufferers of some of the other more prevalent rare diseases.
(10 years, 5 months ago)
Grand CommitteeMy Lords, I warmly congratulate the noble and right reverend Lord on securing this debate on a critical and all too often overlooked subject. It is a source of huge pain for all those concerned, not just from the loss of life but for the family, friends and community in which the individual lived. A traumatic, violent death is bad, but when it is self-inflicted it is hugely confusing.
Of course, suicide is historically fraught with stigma—not least, I do not need to tell the noble and right reverend Lord, in the church. Some 20 years ago, when I had to formulate the “Health of the Nation” strategy, there were five areas where we wanted to see improvement, which the health service or government departments could not deliver but which required the co-operation of the community and the charities. Under mental health, my targets in 1992 were indeed reducing the overall suicide rate by at least 15% by 2000 and reducing the suicide rate of severely mentally ill people by at least 33% by then. However much prejudice there was against mentally ill patients at that time, the greatest danger that they posed was to themselves, and the rate of those officially receiving mental health care was appalling.
I do not want to encroach on the area of the noble Lord, Lord Ramsbotham, but in today’s environment the terrible loss of life in young offender institutions is of great concern, as is the extraordinary influence of the internet, which in one way can be a source of befriending those at risk of suicide but, it seems, has somehow been distorted, misused and abused to actually precipitate suicide events. It is my view that, rather like when the Member of Parliament for Worthing was very preoccupied with reducing road accidents, there was a time when more young people lost their lives in road traffic accidents. Now, of course, the figure for suicide is higher, and has been for some time.
A campaign to tackle that could not be done just by allocating money. I fall out with the noble and right reverend Lord for simply thinking that charities need more money so that they can abuse the Government further for not giving them more money. The answer here is more subtle and requires broad ownership.
In the voluntary sector I want to commend Cruse Bereavement Care, of which I am a patron. It provides support for those whose relations and friends have taken their own lives. As the noble and right reverend Lord touched on, the result is intense anger—how could the individual have done it?—shame and isolation. You can tell somebody that your relation died of cancer, but it is still very difficult to say it of suicide. There is guilt—what more could we have done? There is confusion—why?—and endless reproach. It is very hard to achieve a sense of peace when a close relation has taken their own life. As we know, there are all too many in our parliamentary family whose children have done that.
The parents of Charlie Waller set up a wonderful charity when their son took his life in 1998. It works with health, education and the private sector on tackling depression and giving practical advice to people whose children and friends might be thinking of suicide. These people might think, “If I mention suicide, will the individual go over the top and take their own life?”. Many people are uncertain what the toolbox is. Traditionally GPs were particularly poorly equipped in mental health skills, but they are improving.
I congratulate the Government very warmly. I have looked closely at the suicide prevention strategy. I think it is a tremendous step forward. It is in the context of the “No health without mental health” keystone of government policy in relation to health. I am not sure it is just a question of more money. I am sure that it is constantly reminding us that this is a critical issue, a serious threat to life that people should not be afraid to discuss and draw to other people’s attention. For that, again, I praise the noble and right reverend Lord.
(12 years, 10 months ago)
Lords ChamberMy Lords, I am delighted to follow the right reverend Prelate and relate to him the advice first given to me when I was one of the two people who planned to speak in this debate along with another former Secretary of State for Health. I look forward to hearing what my noble friend Lord Fowler says towards the end of it. The advice I was given was first to find the chaplain as he will tell you what is really going on in a hospital or health institution.
I give this Bill an unequivocal and extraordinarily warm welcome. For someone who has spent the best, hardest and most rewarding years of her life as a Health Minister and then a Secretary of State, I enjoy hearing people say, “The Secretary of State should be hands on”. I do not think that many of the people who work with me would think I was anything other than hands on, but I have discovered that five years of sleeping four hours a night still does not mean you can cover the full detail of everything that is going on within the National Health Service.
I welcome this clarity of the roles, responsibilities and institutions which I believe will lead to a much more effective and better managed health service. We may spend £128 billion a year on the health service and there may be nearly a million people working in it, but I remind the House that in the past 13 years there have been six Secretaries of State. That means a massive organisation getting ready for one Secretary of State, then another Secretary of State, then another, and any number of junior Ministers, all with their special pet projects, all disrupting and trying to leave their mark on the National Health Service. Some in this House dislike comparisons with the commercial world but I am going to make one. One of our successful businesses in the United Kingdom, which is very consumer-responsive, is Tesco. Tesco has half the number of people and half the budget but remains a huge and complex organisation. The chief executive has been on the board for 19 years and he was the chief executive for 12 of those years. It is romantic poppycock to think that the Secretary of State should be personally involved in all these various issues. Aneurin Bevan said that whenever a bedpan drops, the noise reverberates down Whitehall. The point is, it is not the bedpan that the Secretary of State should be concerned with but the much broader strategy, accountability to this House and greater clarity about commissioning, Monitor, public health and patient involvement. I believe that the Secretary of State and his team have addressed many of the knotty problems and conundrums which, as many have said, have been the prime preoccupations of those leading the health service for many years.
The only area where I fall out with the Secretary of State and his team is in describing this as radical, revolutionary and the greatest change the NHS has ever seen. That is total nonsense. Those of us who have been involved in the very close detail of the health service over the years have all tried to get the balance right. We have tried to get the balance right with local authorities. That is very difficult with regard to continuing care. The budgets of local authorities and of the NHS are entirely different. The accountability is different. Why do we have so many people in prisons? That is not least because there is cost shunting away from social services into the Home Office. I see that the former Chief Inspector of Social Services knows exactly what I mean. Cost pressures arise between social care and the health service. The health and well-being boards and the role of the director of public health are excellent recognition of the areas where local authorities can and should be in a powerful position but should leave the health service to deliver this highly complex challenging work for the 21st century.
Patients are not mild, obedient, good and kind and are not as deferential as they were in the past. There are more hits on the internet on health than on any other subject. Patients are experts. They go to see their doctors and say, “I have looked you up on the internet and these are the research papers I have seen. Why haven’t you produced this or that?”. It is a totally different relationship—a partnership. It is a good relationship but it is a very different world, particularly if you are a clinician. The development of HealthWatch and the information available for patients has got the balance right.
My noble friend Lord Howe said that this Bill has already had the most unprecedented amount of scrutiny—40 sessions in another place and 100 Peers hoping to discuss it. During this period and during the listening exercise, there have been some very informed and clear improvements. I dare say that we might have achieved them in Committee but the listening exercise has provided many of them. The role of Monitor has been excellently refined. It has allowed the transitional phases to develop, but the health service needs a bit of muscular intervention. During my time, a thousand years ago, we had regional chairmen. Sir Donald Wilson in the north-west sorted people out and banged their heads together. He was a farmer. If you were very good you got a cheese and if you were very, very good you got a sack of potatoes, but he knew how to intervene when the different forces—the tribes of the feudal tendency in the NHS—were at a logjam. Last week, Monitor intervened in Manchester regarding the seven provider hospitals to the Christie. We need that mechanism where intervention can occur.
I support the Secretary of State and his team. Too many people in this House are in their anecdotage but I need to pass on two anecdotes. The two people who used comprehensively to beat me up in a close encounter with Jeremy Paxman or John Humphrys were the head of the BMA, Jeremy Lee-Potter, and his successor, Sandy Macara. Jeremy Lee-Potter was based at a hospital in Poole. I was always hearing that the changes would lead to rack and ruin, the end of the health service and that the terrible, wicked, infernal market would be ghastly, so I visited the Poole hospital. I said that I wanted to meet a team of people, young and old, to ask how things were going. Universally, they all said, “These trusts are really good. They are really working”. I bumped into Jeremy Lee-Potter in the haematology department and told him what I had heard. He said, “I know, Virginia, it is very good at Poole but everywhere else there is a problem”.
My other example concerns Sandy Macara, a public health doctor. I was passionate about public health and am so pleased at what we are doing with public health. Sandy Macara comprehensively beat me up on the “Today” programme and spat me out the window. I had to go home covered in bandages. On my way out of the studio, he said, “I do hope that will help, Virginia”. There is an institutional belief that if you make a big noise about the Health Service it will attract more resource, so going quietly is never an option because people have to make a great noise to make sure that they continue to be properly recognised.
I am pleased to speak after the noble Lord, Lord Birt. When he was running the BBC I felt that he was a kindred spirit in that if you mind about the mission, you have to do unpopular things. If you did not care, you could give everybody what they wanted all the time, but if you care you have to tackle the difficult problems. A former BBC chairman, who was also chairman of an NHS trust, used to cite Burke. Goodness knows, our Secretary of State has given dedicated, committed attention to this issue over many years. Edmund Burke said that you must be,
“proof against the most fatiguing delays, the most mortifying disappointments, the most shocking insults; and, what is severer than all, the presumptuous judgment of the ignorant upon their designs”.
I have had correspondence—as we all have—from any number of people who are frightened by the Bill. One correspondent says:
“Please ensure my grandchildren can have the same benefits that you and I have received from the NHS since 1948”.
I do not want my grandchildren to have the same benefits; my grandchildren have high standards. Like everybody else in this House, I want my grandchildren to have a better, more responsive, more effective and cost-effective NHS. Only through this Bill will we achieve that.
(13 years, 3 months ago)
Lords ChamberMy Lords, I, too, support the amendments of the noble Baroness. My interest is that I appointed her as chairman of the Human Fertilisation and Embryology Authority all those years ago. One of the first Bills for which I had responsibility in Parliament when I was Minister for Health was the Human Fertilisation and Embryology Act, following the very distinguished report of the noble Baroness, Lady Warnock. I have also served on the Medical Research Council.
The noble and right reverend Lord, Lord Harries, said that umpteen days had been spent debating the Bill. I like that term, and it is absolutely accurate. I, too, when I was a Minister in another place said, “Thank God for the House of Lords”, because, whenever a particularly difficult and emotional issue arose, I knew that words of wisdom could be consulted in the House of Lords. They were a very good touchstone for me when I took on the task.
If ever there was emotion between scientists, clinicians, social scientists, theologians and patient groups, it was then. The fact that it has now become a relatively quiet issue does not mean that it does not have the potential to become once again extremely noisy. It speaks for the hugely effective way in which the HFEA has gone about its work, and the confidence that it has built not only in the United Kingdom among all parties but, as has rightly been said, around the world. If clinicians are irritated by the HFEA from time to time, that makes me even more convinced that there must be something good about it, because there is a distinction between the mind of the scientist and pioneering doctor, and the ethical balance of those calling for slightly more caution, control and constraint. When the area is that of the creation of life outside the body, it is a moral issue: we should never forget that.
The Minister, who is sympathetic, thoughtful and kind, and who listens endlessly to requests from Members of this House, has already been extremely accommodating. He has agreed to coherence and transparency; he has agreed that he will not rewrite the ethical standards; and he has agreed that most of the functions should be kept together. Nevertheless, the Care Quality Commission has a huge agenda of work, as was rightly said by the noble Lord, and most of its activities are of a different nature from those of the Human Fertilisation and Embryology Authority, so can the Minister give us further assurances and find a way to meet the objectives of the noble Baroness’s amendments?
Amendment 9, which is about the establishment of the health research regulatory agency, is even more important to me because it seems to be a prerequisite for the changes taking place. Of course we all believe in what we have now learnt to call a bonfire of the quangocracies. The easiest thing for any junior Minister to do is to make their name by setting up a quango; it is much harder to make your name by shutting down a few quangos, and we know it needs to happen. However, like other noble Lords, I urge the Minister to think very carefully before he puts the HFEA and the HTA at the top of his list.
My Lords, I shall speak to all three amendments in this group. I declare my interest as chair of the Human Tissue Authority, whose work is so much affected by this Bill. At the start of the passage of the Bill, there was much confusion over its purpose and the future direction of travel for many of those arm's-length bodies listed in it. Much progress has been made during the passage of the Bill. The Government have given due attention to concerns raised, thought through the potential outcomes and clarified many issues for all of us. I want to thank the Minister, the noble Earl, Lord Howe, for the attention he has paid to our specific areas of interest: the HFEA and the HTA. I particularly welcome his statement in the letter he sent to my noble friend Lady Thornton in which he recognised the need for our preferred option, which is to keep the functions of the HFEA and the HTA together, and gave a commitment to discuss directly with the HTA any potential movement of our research-related functions to another organisation.
I believe we are nearly there, but I feel that these amendments are necessary and will act as a safety framework for the Bill as it enters the other place and then goes onwards for external consultation. We are seeking a set of reassurances and safeguards from the Minister to ensure that the hard work everybody has done to shape this Bill will not be lost further down the road.
The noble Baroness, Lady Deech, and the noble Lord, Lord Walton of Detchant, have already set out the main arguments in favour of the amendments. I support them and shall not reiterate them. The amendments suggest measures by which the Government could assess the cost-effectiveness of the proposed moves, and I urge the Minister to consider utilising them. In his letter to my noble friend Lady Thornton, the Minister addresses the need for an impact assessment, but he proposes only a partial assessment. I believe that a full and thorough assessment is needed in order to give a true picture of cost-effectiveness. We are all looking for ways in which to reduce costs and bureaucracy and therefore see an increase in cost-effectiveness as the gold standard we should aim for in the public services we provide. If a saving is made in one area only to increase costs in another, that would be unacceptable. It is for this reason that I urge the Government to conduct a full impact assessment, not a partial one.
The HTA is already recognised as an efficient regulator with a clear focus on improving value for money. We are a lean organisation costing only £1 million in government grant in aid and we will reduce that by 14 per cent in cash terms this year. We have reduced our licence fees across all sectors this year, including a 30 per cent reduction in the research sector. I have already raised and evidenced my concerns that any proposals to transfer the HTA's research functions would not achieve either simplification or financial savings. Indeed, we estimate that it would impose additional regulatory and financial burdens on around 200 establishments across various sectors. So I suspect it will not surprise your Lordships to know that I am concerned to ensure that cost-effectiveness is real and not just perceived as an outcome of this assessment.
I now turn to the amendment that deals with setting up the new independent health research agency. As I mentioned, I seek reassurance from the Minister in a set of safeguards. The Government have set out a draft transfer timetable, and have made clear their intention to cause the least amount of disruption to all involved by enacting all transfers of the HTA and HFEA functions at the same time. None of this can happen until the health research agency has a legal basis in its own right and it has been decided whether any HTA functions should transfer to it. Will the Minister therefore outline a more specific timetable for its establishment, and reaffirm his commitment to hold off transfers until then?
In addition, the amendment would require that a separate ethics committee be established within the new agency to undertake the ethical considerations of any functions that are transferred. This would be paramount in ensuring that we do not lose public and professional confidence through this period of change and that we continue to ensure that tissues and organs are used safely and ethically and with proper consent. Finally, therefore, is the Minister minded to establish such a committee and so accept this amendment in full?
(13 years, 10 months ago)
Lords ChamberMy Lords, I warmly congratulate the noble Earl, Lord Sandwich, on raising this matter of great importance. I think that all of us greatly respect his commitment to and interest in this issue and the depth of his research and investigations. My earliest involvement in this subject was in the early 1970s when I worked in child guidance clinics in Brixton and Peckham. I was all too aware of the number of mothers whom I met who had been prescribed Valium or Librium for their problems, which did not seem to help them one little bit. In some cases, it seemed to remove the inhibitions that they might otherwise have had and their family situation deteriorated faster.
I can understand what it is like to be a general practitioner in an impoverished area where a great number of people come into the practice with insoluble social, psychological and economic problems. The requirement of a patient for a pill for every ill must have been irresistible. One of the great strengths of GP fundholding was forcing and enabling general practitioners to look at the opportunity cost of pharmaceutical routes. Some of them could prescribe more cautiously and employ a counsellor or a more appropriate resource to help these patients, the problems of many of whom were highly complex and difficult—even intractable. For some of them, with the best will in the world, the general practitioner was very poorly equipped. However, once a benzodiazepine is prescribed, addiction can easily develop.
I am aware that all medication has side effects. For every physician and clinician who prescribes any product, there is a risk-benefit analysis. Many of those who visit a physician in these circumstances are in a deeply troubled and disturbed state. I also accept that when you look at the detail, for example, of the Royal College of Psychiatrists’ 1997 report, or at the NHS South Essex Partnership’s All About Benzodiazepines: Treatment for Anxiety and Psychosis, you see that best practice now advocates that,
“this should be no longer than about one month to help you get over your problems”,
and that there should be short-term prescribing and much lower doses.
In days gone by, particularly when benzos were still within patent, it may have been that pharmaceutical companies oversold their benefits and the drugs were overpushed as a solution to too many problems. That is no longer the case, because the drugs are now into the generic space and there is not the same advantage to the pharmaceutical companies of overpushing these products. Neither are we a nation of great pill pushers.
However, a great number of people suffer from anxiety and mental health conditions and we have been all too slow at making talking therapies as available as a pharmaceutical outcome. We need to consider all those contributing elements as we look at our problems today. I very much hope that, with the review that the Government have in hand, they will look again at the pathway of care for many of those who have ended up addicted. It of course starts with the general practitioner and with looking to all community resources, as well as with perhaps looking at the acute sector. I hope that they will reissue guidance and that, given this new start with general practitioners in a much more powerful position in commissioning care and planning care pathways, they will be absolutely certain that the real facts, and the issues and concerns over benzodiazepines, are properly understood.
The noble Earl referred to Professor Heather Ashton at Newcastle University. She and others have taken care, time and trouble to look at ways in which addiction can be tackled. But, once addicted, all will be aware that the withdrawal of the product is extraordinarily difficult. Debate has been mentioned about the National Treatment Agency possibly taking over this field. This is not a preference for the All-Party Parliamentary Group on Involuntary Tranquiliser Addiction. There is real anxiety that, instead of getting better, things will somehow get worse and fall between the cracks. The Government will make their decisions, but I think that all of us would ask that if this is a step forward it must be taken from first principles. The arguments, issues, dangers and risks must be properly addressed if the agency takes on that additional responsibility.
I, too, ask the Government for the timetable of the review. I would like to know more about the review. Who is chairing it? Who is being consulted and what are the real objectives? I ask the Minister to assure us that the result will be not only a review but guidelines for best practice. As the noble Earl said, all too many people at this moment are involuntary addicts of benzodiazepines. The danger, the damage, the hurt and the pain, not only for those individuals but for their families, are almost without cost. I very much support the noble Earl.