Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015
Baroness Warwick of Undercliffe Excerpts(9 years, 2 months ago)
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Lord Ribeiro
It was made very clear by the noble Lord, Lord Patel, and others that the need for the two techniques is to allow the HFEA to make a decision on which is the preferable technique. We have a situation at the moment where many of the embryos that are produced are discarded after the 14 days or so that are allowed. I will not go into the question of adoption. It is a matter of choice. If the family would prefer to have a child without this affliction, that is their choice, and they may not choose to go down the adoption route.
Returning to the subject of safety, as has been stated, no procedure can guarantee 100% safety. Even the natural birth that we all go through will produce children with defective genes and abnormalities; even nature cannot get it 100% right. To expect a situation where we have to demonstrate to all and sundry that this procedure is 100% safe is impossible.
Finally, it is important to recognise that passing this regulation is not opening Pandora’s box. We are not going down the route of eugenics and we will not create monsters. We must trust the scientists. We must recognise that we have regulation in this country—one of the most regulated countries in the world in the health field—and I believe that we must leave it to them to make the case. As was said by my noble and learned friend Lord Mackay of Clashfern, the decision was already made in 1990, when he was responsible for taking the Bill through Parliament. In 2008, it was modified with the full understanding that this type of technique might well be brought into use.
The day has come, the time has come and, frankly, we must just get on with it.
Baroness Warwick of Undercliffe (Lab)
My Lords, I come to this debate without any expert legal or medical experience or perspective. As a former chair of the Human Tissue Authority, I worked closely with the Human Fertilisation and Embryology Authority, the well established regulator in this area. I came to know the way in which it regulated and certainly had confidence in it, as indeed Parliament has. As a former chief executive of Universities UK, I am also familiar with the research trials that are rigorously and vigorously undertaken in health research before any change or new technique is introduced into clinical practice. I have come to know the bodies which speak for science and for medical research, such as the MRC and the Royal Society, and the Association of Medical Research Charities, of which my noble friend Lord Turnberg has been a scientific adviser, as well as the Nuffield Council and the Wellcome Trust. I realise how fortunate we are in this country to have pre-eminent organisations, respected around the world, the main aim of which is to ensure that research is rigorous, honest, thorough and ethical. I say all this because I take great comfort in the fact that, where there are complex areas of science or new techniques, particularly where they might be controversial—as with fertility and genetics—we have the knowledgeable, forensic and wise guidance of these bodies to help us in Parliament to arrive at secure solutions.
Mitochondrial DNA disease is severe. In most cases, we are told, it causes early infant death, and the few children who survive suffer multiple health problems. Mitochondrial donation, a new reproductive technology developed by our world-leading scientists in Newcastle, is important because it enables families affected to have a healthy child. Our decision today will be immensely important to those families.
A key question has been raised about the safety of the procedure. As others have said, while no medical procedure can be guaranteed to be 100% safe, a huge amount of testing has been done to establish the relative safety of this particular procedure.
I have no professional expertise in this or in any other area of disease. So, like most other women and men in the street, I rely on the rigour and competence of our regulators, ethicists and clinical testing systems to provide the best possible guidance on new techniques and procedures, to enable me to make up my mind—even if some of the evidence is contradictory. All the bodies that I referred to earlier, and others which represent the families of those tragically affected by the disease, favour this regulation to permit mitochondrial donation. They have provided excellent briefings, and there was a hugely helpful seminar yesterday where experts on different aspects of this issue addressed a range of concerns. They have pointed to seven years of intensive scrutiny, three separate reviews of the scientific evidence on the technique’s safety, independent ethical reviews and an extensive public consultation. Currently, the law allows for these techniques to be used only in research. It is up to us in Parliament to decide whether these techniques are ethical and whether they may, with safeguards, be used in patients.
The Nuffield Council on Bioethics found that, given the benefits to individuals if shown to be sufficiently safe, the techniques are ethical for families to use. The public, during consultation, concurred. The Wellcome Trust has helpfully set out the scientific evidence and detailed reasons why the procedure cannot be seen as genetic modification. What is very clear is that scientists throughout the lengthy period of research have been open and transparent. Nothing has been hidden, including their disagreements. There has been no conspiracy, as some of the critics seem to have suggested.
I found that I had a lot of sympathy with my noble friend Lord Turnberg and the noble Viscount, Lord Ridley. All the evidence I have seen and the arguments I have heard reassure me that this is not a slippery slope or an open door, or any other cliché. Nuclear DNA is not altered, so donation will not affect the child’s appearance or personality, or its uniqueness. It will simply allow parents to choose to have children who are genetically related to them but who are free from potentially devastating disease. I trust that the House will support these regulations.
Learning Disabilities: Premature Deaths
Baroness Warwick of Undercliffe Excerpts(9 years, 9 months ago)
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Earl Howe
I take my noble friend’s point. The specific needs of people with learning disabilities are being considered as part of the overall work programme to provide people with online access to their GP practice and GP-held e-record. That is being done in the wider context of the development of a fully comprehensive patient-held record. NHS England plans to hold a meeting later this year to look at developing a national standard for a hospital passport. This will be a patient-held document that will detail key information to be shared with any contact in the NHS.
Baroness Warwick of Undercliffe (Lab)
My Lords, what is the Minister doing to ensure that comprehensive community learning disability teams are available in all areas and that GPs are proactively referring patients with a learning disability to these vital services?
Learning Disabilities: Community-Based Support
Baroness Warwick of Undercliffe Excerpts(9 years, 9 months ago)
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Earl Howe
Lessons are being learnt almost by the day by the NHS and local government on how to pool funding and share responsibility in areas of this kind. Admittedly, most of the effort at the moment is on the vulnerable elderly but the lessons apply equally to those with learning disabilities and to ensuring that we do not have any artificial walls forming between the NHS and local government as regards the flow of money. I can tell the noble Lord that this is a major area of focus for both NHS England and the Local Government Association at the moment.
Baroness Warwick of Undercliffe (Lab)
My Lords, given the recent resignation of the director of the joint improvement programme, which was tasked with delivering the Winterbourne View action plan only 18 months ago, will the Minister let us know what the future of the programme holds and how it will work with the new group, also tasked in a similar way, led by Sir Stephen Bubb?
Earl Howe
My Lords, I have every confidence that the programme will continue as we had hoped it would, and indeed with a renewed momentum. The noble Baroness is right that NHS England has asked Sir Stephen Bubb, the chief executive of the charity leaders’ network ACEVO, to head a new group of experts and advisers to develop a national guide on how we provide health and care for those with learning disabilities. We have every confidence that Sir Stephen, with his immense experience in these areas, will be able to bring everybody together to a good result.
People with Learning Disabilities
Baroness Warwick of Undercliffe Excerpts(9 years, 11 months ago)
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Baroness Warwick of Undercliffe (Lab)
My Lords, I, too, thank the noble Baroness, Lady Hollins, for introducing this most important debate. She is a doughty advocate for those with learning disabilities, and I am glad to be able to support her in this debate.
Like many across the Chamber, I am deeply shocked and concerned by the findings of the confidential inquiry into premature deaths, but I am also shocked and concerned at the lack of action by the Government. The appalling statistics speak for themselves. I repeat just one: men with a learning disability die 13 years earlier than the general population, and women die 20 years earlier. This stark fact alone should focus all our minds in this House. I say I am shocked and concerned because I was expecting to come here today to discuss progress on this agenda, yet as far as I can see, very little has been done. It is not as if this is something new to the health service and policymakers.
Some 20 years ago, research by the noble Baroness, Lady Hollins, exposed these stark inequalities. It is worth repeating the litany the noble Baroness gave of the reports since then: the point was made again in 2001 in the Valuing People strategy, by Mencap through its Death by Indifference campaign in 2007, in the ensuing report from Sir Jonathan Michael and most recently by last year’s confidential inquiry.
Mencap has been mentioned several times in this debate. I thank it for its briefing and for its immensely important work. I agree with the noble Lord, Lord Rix, himself a staunch campaigner for those with learning disabilities, that Mencap’s Death by Indifference campaign is one of its most powerful and is as important today as it was when it was launched. It has worked tirelessly to support families who have lost loved ones and, most importantly, to tell their story. It has also striven to promote good practice through the Getting it Right charter, to which more than 200 hospitals have signed up. The charter was produced together with professionals and the royal colleges, and is a set of actions that hospitals and healthcare staff commit to in order to break the historical cycle of health inequality faced by people with a learning disability.
These actions include appointing learning disability nurses, ensuring that hospital passports are available, and making sure that staff are trained in learning disability awareness as well as ensuring that families, carers and, of course, people with a learning disability are respected and listened to. It is a list of commitments that, if followed through and adopted right through the caring professions, would make a huge difference. I hope that the Minister will commit the Government and NHS England to much more vigour in their promotion of the actions in the charter.
I will say a few words about training, and then something about the importance of annual health checks, which have already been referred to today. On training, medical and nursing students seem to be woefully underprepared to treat people with a learning disability. This seems hard to believe, considering that there are around 1.4 million people with a learning disability across the UK. However, a final-year student nurse who was about to graduate told Mencap that she had had only one lecture on learning disability on her three-year course. This appears to be woefully inadequate, particularly given that this group is much more likely to have long-term and multiple health needs, as well as specific needs around support. I wonder whether this lack of training will be the case for other groups. I rather doubt it. In fact, it seems to me to be a national scandal. I hope that the Minister will comment on the inadequate nature of training provision in learning disability and tell us what he, the department, NHS England and health education will do urgently to address this.
Annual health checks have been mentioned already. I agree with other noble Lords that they are essential in reducing premature mortality and preventing people ending up in acute care. People with a learning disability are more likely to have long-term medical conditions such as epilepsy and cardiovascular problems. In addition, people with a learning disability are more likely to have multiple health conditions. Indeed, the inquiry found that a fifth of those who died had seven or more medical conditions. Annual check-ups are therefore critical both for GPs and specialists to monitor progress but also to help people to manage their conditions.
However, it is not just about making sure that everyone has an annual health check: the checks must be of high quality. It comes back to training: it should undoubtedly be mandatory for all students. Unfortunately, while some annual health checks are carried out to a high quality, others are not. Mencap has been informed of examples where health checks have been carried out by nurses, instead of GPs as they should be. Other scenarios include GPs ignoring the patient and directing all questions to family members who are with them; I am reminded of the radio programme, “Does He Take Sugar?”. In other cases, patients or family members are asked simply to fill in a form, and the patient has not been examined at all. In the worst cases, some GPs assume that separate conditions are actually symptoms of a learning disability and therefore refuse to treat them, when in fact the conditions are easily treatable and nothing to do with a person’s learning disability.
So what must the Government do? The Government and Health Education England must set mandatory minimum standards of training and continuous professional development in learning disability. Ensuring that our health professionals have good-quality training and personal development will lay the foundations for at long last putting a stop to people with a learning disability dying needlessly. Furthermore, annual health checks must be carried out by suitably trained GPs, and completed thoroughly, with understanding and care. Like my noble friend Lady Andrews, I ask the Minister to update us on the use of data, not just to ensure that annual health checks are undertaken but to explore the care that people with a learning disability receive throughout the health system.
Mencap found that this was not about lack of money, active negligence, mistaken diagnosis or even due to accident, but because of indifference. It went so far as to describe the treatment in hospitals of people with learning disabilities as “institutional discrimination”. How can we accept that? Surely we must regard that as a call to arms from this House for dedicated and immediate action from the Government and the professions to restore the faith of those with learning disabilities and their families that the health service will treat them equally, fairly and with proper compassion. I look forward to the Minister’s response.
Mental and Physical Health: Parity of Esteem
Baroness Warwick of Undercliffe Excerpts(10 years, 7 months ago)
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Baroness Warwick of Undercliffe (Lab)
My Lords, I thank my noble friend Lord Layard for providing this opportunity on World Mental Health Day to focus our attention on how we treat mental health in our National Health Service.
The prevalence of mental illness in the UK was starkly set out in the Government’s mental health strategy, No Health Without Mental Health. I have no expertise in this area, but the figures are desperately worrying. Others have mentioned them, so I will just single out three: almost half of all adults will experience at least one episode of depression during their lifetime, and depression affects one in five older people; about 10% of children have a mental health problem at any one time; the UK has one of the highest rates for self-harming in Europe—400 per 100,000 population. Perhaps I should add that only one in 10 prisoners has no mental disorder.
These numbers have far-reaching impact. As we have been reminded, people with severe mental illnesses die on average 20 years earlier than the general population. People with mental health problems often have fewer qualifications, find it harder to find and stay in work, are more likely to be homeless and have poor physical health. We know that higher levels of insecurity and stress due to the recession, the poor job market and major upheavals in the welfare system have all had an impact on the mental health of the nation in recent years. It is no wonder that mental health services—what my right honourable friend the leader of the Opposition recently called the “afterthought” of the NHS—are straining at the seams.
As others have noted, mental illness is responsible for the largest proportion of the disease burden in the UK at 22.8%, larger than cardiovascular disease at 16.2% and cancer at 15.9%. Yet only 11% of the NHS budget was spent on NHS services to treat mental health problems for all ages during 2010-11. While figures show that investment in mental health services for adults of working age has increased by 1.2% in cash terms, this in fact amounts to a real-terms decrease.
My noble friends Lord Layard and Lord Stone drew attention to the poverty of investment in research into mental health issues, on which I hope that the Minister will comment in his reply.
A report last month from the Mental Health Foundation, Starting Today, showed how demand is rising just as investment in mental health services is falling. It reminds us that these services face even greater pressures in the future: a growing and aging population, increasing levels of simultaneous mental and physical health problems and, of course, funding constraints that have no end in sight. One of its key findings was the need for mental health to be treated as a core public health issue, with a public health workforce that sees mental health as one of its core responsibilities so that,
“it will be as normal for everyone to look after their mental health as it is to look after their physical health”.
This finding is at the heart of today’s debate. I support the Mental Health Foundation in its call on the coalition Government to prioritise investment in our nation’s mental health services. There is an overwhelming need for the aims of parity of esteem to be speeded up and given even higher priority.
The MHF report generated some useful media coverage. However, I am afraid that many more people will have read the stories just days later about the appalling “mental patient” and “psycho ward” Halloween costumes briefly released by two supermarkets, Tesco and Asda, offering customers the chance to dress up as a terrifying, straitjacketed crazy person covered in blood and brandishing a meat cleaver, or in an orange boiler suit, complete with jaw restraint and optional machete. The retailers withdrew the products and apologised with donations to the charity, Mind.
However, then came this week’s front-page headline in a tabloid newspaper, the Sun, giving a shock figure about the numbers “killed by mental patients” over the past decade. The headline plays on precisely the kind of prejudice that people with mental health problems have come to fear most, implying that they are violent, unstable monsters. Of course, the reality is that people with mental illnesses are three times more likely to be victims of crime than the general population, they are five times more likely to be victims of assault and severely mentally ill women are 10 times more likely to be assaulted.
Appallingly, victims say that their reports to the police are often dismissed or disbelieved. So it was good to see, earlier this summer, that there is to be an extension of the pilot scheme for mental health nurses to accompany police officers on emergency calls, to try to improve the way that people with mental health problems are treated during emergencies. This might go some way to avoiding incidents such as those referred to by the noble Lord, Lord Adebowale, and one that a friend of mine recently reported to me. A colleague of hers had a husband who was finding it difficult to manage his bipolar medication. He had gone missing during a particularly distressing bipolar episode and the wife’s sister, a GP, had alerted the local police about his condition. Nevertheless, when he was found, banging on the locked door of a church, he was handcuffed, mistreated and kept in a police cell overnight on the assumption that he was drunk and would be sober in the morning.
We must tackle the stigma attached to mental illness. That stigma feeds prejudice and can lead to discrimination, particularly at work. For me, this comes close to home. A senior member of my staff told me only years later that she had left out her own brief history of clinical depression on the HR department’s health declaration form, for fear of being considered not capable of doing the job. That fear of discrimination remains. As someone told me recently, “If you phone work saying you’re staying in bed for a few days with flu, employers will be understanding. You’re not likely to get the same response if you say you’re staying in bed because you’re depressed, or feeling suicidal”.
Stigma and discrimination ruin lives and prevent people with mental health problems using their full potential and playing an active part in society. Mind and Rethink Mental Illness are campaigning to change this, but, sadly, it is still true that we view mental illness differently from physical illness and that has a direct, negative impact on people with mental illness and on the understanding and services that they receive.
The Mental Health Network says that parity of esteem for mental health will happen only if services and organisations work together. The Royal College of Psychiatrists’ trenchant Whole-Person Care report earlier this year sets out what it believes a parity approach should look like. Crucially, it emphasises that there should be investment in the prevention of mental health problems and in the promotion of mental well-being, in proportion to need. Yet only five strategic health authority regions were able to report increased investment in mental health in 2011-12. Underinvestment in the mental health care system, when those in most need often miss out on essential care, is a disgrace. While we have heard much about the Government’s commitment to ensuring parity between services for physical and mental illness, it is abundantly clear that we need to do much more to bring this parity about. There used to be a taboo about speaking about cancer —“the big C”—as which, thankfully, has now disappeared. The same must happen with mental illness.
To end, I will echo the concerns of my noble friend Lord Layard about the new commissioning systems. Will the Minister, in his reply, tell us how the new GP commissioning process, as a front-line service, will respond to the need for parity? How will CCGs be helped to improve their mental health commissioning capability and the quality of the mental health services that they are commissioning? What assurance can he give us that the new NHS commissioning systems will truly deliver for mental health?
Health: Medical Innovation
Baroness Warwick of Undercliffe Excerpts(11 years, 3 months ago)
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Baroness Warwick of Undercliffe
My Lords, when I read just before Christmas the cri de coeur of the noble Lord, Lord Saatchi, about the lack of progress in finding cutting-edge treatments for cancer, I had huge sympathy, which has been reinforced by his passionate speech today. I remember a similar sense of anger, frustration and bewilderment at the lack of speedy diagnosis and then effective treatment of my mother’s cancer, albeit some years ago now.
I hoped that the science would move on. I knew how good our scientists and our clinical researchers were, so there was no question in my mind that our scientists could produce results so long as they were given the means and the encouragement to do so. Sadly, the improvements have been patchy and, in some cases, stubbornly resistant. A few months ago, I noted in a debate on pancreatic cancer that there had been virtually no change in treatments over the past 20 years, although it is about not just drugs but early diagnosis and access to surgery.
There are many reasons why progress has been less speedy than we might have hoped. The noble Lord, Lord Saatchi, has identified one important area—the effect of medical negligence claims and the risk-averse culture that they generate—and I wish him good speed with his Private Member’s Bill.
Another area often cited as a brake on innovation is regulation. I declare an interest as chair of the Human Tissue Authority. I want to offer some thoughts on how regulation might be a force for good and need not stifle innovation. It is vital that all bodies involved in the health service do all that they can to facilitate high quality medical innovation. Innovation in medicine leads to improved healthcare and quality of life, and can have significant economic benefits.
Sir David Nicholson’s recent report, Innovation, Health and Wealth, provides us with a clear picture of what needs to change if we are to encourage further innovation in medicine and healthcare. In his report, Sir David makes a passing reference to regulation as a “top-down pressure” on innovation but, importantly, he does not identify regulation as one of his six,
“barriers to innovation in the NHS”.
No one doubts that regulation has value in providing assurance for quality, safety and efficacy, and regulation can sometimes be a driver of innovation. None the less, and notwithstanding the exclusion of regulation from Sir David’s six barriers, it is clear that some regulation, if it is excessive, complex, unclear or inflexible, can impede innovation. I believe that we should review all healthcare regulation in terms of design, implementation and enforcement, to ensure that unnecessary barriers are removed. The regulators should be challenged and, just as importantly, should challenge themselves to ensure that they are not creating barriers to innovation.
I shall finish with a few words about the approach to regulation used by the Human Tissue Authority. Of particular relevance to this debate is our remit relating to the use of human tissue for patient treatment and the development of regenerative medicines, where we work very closely with the Medicines and Healthcare products Regulatory Agency. The HTA is very supportive of research and ensures that effective regulation supports good practice and high-quality science which, in turn, leads to improved healthcare.
There is no doubt that some of the regulation in this area is complex, primarily because the science itself is complex, as is the legislation underpinning that regulation. Complex does not have to mean burdensome, however. At the HTA we believe that a key role of a regulator is to provide clarity and to support organisations in working through the quality and safety regulations. I urge the Minister to reinforce the point that, if done well, regulation can yield significant benefits. It provides assurances about quality and that products can be used safely for patient treatment. It promotes faith in the efficacy of products. Will the Minister confirm that regulators should be committed to doing all that they can to support innovation in medicine? This is certainly true at the HTA, and I hope that the Minister will encourage all regulators in the sector to have such an enabling approach.
In my last few seconds, I should like to raise a related topic. I learnt this morning of a proposal in the European Parliament that the minimum duration of a medical training programme should be increased to six years. This could have serious consequences for graduate-entry programmes in the UK. Medical schools will probably not be able to recruit arts graduates, and surely we need creative people in the profession if we want to be more innovative, especially when evidence shows that they make as good doctors as do science graduates. Will the Minister take this back to his colleagues and ask them to do all that they can to prevent the requirement being increased in this way before the vote on 24 January?
Health: Pancreatic Cancer
Baroness Warwick of Undercliffe Excerpts(12 years ago)
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Baroness Warwick of Undercliffe
My Lords, I, too, thank the noble Lord, Lord Aberdare, for securing this debate and for his thoughtful and compassionate speech. It is clear that I am not the only speaker today who has had the harrowing experience of seeing a beloved family member or friend suffer from this lethal disease. My sister-in-law died of pancreatic cancer, and her story mirrors much that has been said today. She was prescribed pills for depression and had a late diagnosis, first of pancreatitis, which was not considered serious, and only much later one of pancreatic cancer. There was little understanding from her GP—not indifference, but perplexity over the symptoms of a disease that we know GPs will see as a new case perhaps only once every five years.
The statistics speak for themselves and I will not repeat them, except to remind the Committee that this is the fifth most common cause of cancer death in the UK, yet it receives less than 1 per cent of overall cancer research funding. For the 8,000 people a year in the UK who are diagnosed with the disease—that is 22 people for every day of the year—the outlook is grim indeed. Figures from the excellent body Pancreatic Cancer UK suggest that these patients have the least satisfactory health service experience of all patients diagnosed with major cancers. Its Campaign for Hope has two ambitious goals: to double survival rates within the next five years and to move the experience of pancreatic cancer patients from being one of the worst to one of the best.
How can we do that? We need, as others have said, to increase early diagnosis; we need greater investment in research and effective treatments; and we must improve the quality of patient experience for those with pancreatic cancer. A first step would be, as the noble Lord, Lord Aberdare, said, to place it firmly on the national awareness and early diagnosis initiative agenda, and I would like the Minister’s response on that. A review would look at, for example, how we can develop and provide risk assessment tools for GPs.
Then we need to be sure that any new commissioning arrangements and guidelines provide GPs with sufficient information about pancreatic cancer and referral criteria. Will the Minister confirm that this cancer will receive the attention that it deserves within the Government’s Improving Outcomes strategy for cancer?
We need a significant increase in research investment, and we need to increase clinical trials. What steps are the Government taking to ensure that clinicians and patients are fully informed about all available pancreatic cancer clinical trials?
Finally, we need to improve the experience of patients. I know that specialist nursing support—clinical nurse specialists—can make a huge difference to the experience of pancreatic cancer patients, but access to these amazing individuals is limited. Does the Minister recognise the vital role these CNS staff play in helping to improve the experience of patients, and can he offer any assurance about future provision?
There is no excuse for patients in the UK faring so much worse than those in other countries. We must improve survival rates and the quality of care—and of life—for those with this terrible form of cancer.
Health and Social Care Bill
Baroness Warwick of Undercliffe Excerpts(12 years, 5 months ago)
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Lord Patel
My Lords, I hesitated to rise last time because I saw the Minister getting up, and I thought he was about to make a pronouncement to stop the debate because he had a solution to it all, but I realise now that was not the case.
I strongly support the amendment of the noble Lord, Lord Willis. I have my name attached to it. It is crucial that we hear more than just the setting up of the authority, as the Government have announced a few days ago, to take charge of the National Research Ethics Service. I was part of that organisation until I finished my time in the National Patient Safety Agency and was responsible for setting up much of its work, so I take the blame for its shortcomings, if there were any.
The issue we are discussing is why there is a need to set up the Health Research Authority with wider functions than those of NRES. The report produced by the Academy of Medical Sciences identifies serious issues which are important if we are going to deliver on the life sciences strategy announced yesterday and on which I have highly commended the Government; it is excellent. But if we are to deliver on it, we need to streamline the regulatory processes that currently are so cumbersome. For instance, an NHS research and development permission is required at every NHS site where the research is to take place, and the review by the Academy of Medical Sciences confirms that this is perceived to be by far the greatest barrier within the regulation and governance framework. The current process for obtaining research permissions across multiple NHS sites is inefficient and inconsistent. Local negotiation about research contracts and costings is a further source of delay, together with a lack of agreed timelines within which approval decisions are made. Governance arrangements are therefore very important, and the noble Lord, Lord Willis, told us that the report has highlighted that there should be a governance board as part of the Health Research Authority.
The noble Lord gave some examples of delays which had been highlighted by respondents, including in kidney research, stroke research and multiple clinical trials involved in heart research. The solution is to set up an authority which can provide a national research governance service as a part of it. Clinical trials are another example. The noble Lord mentioned how our global share of clinical trials has fallen dramatically. This is particularly related to the fact that it is cumbersome to conduct clinical trials in the UK. To address the challenges identified around clinical trials, improvements are clearly necessary at both the European and the UK level. I know that discussions are going on and that the department is involved in a revision of UK clinical trials, and I hope that they will come to some fruition. The noble Lord also said that the relationship between the new Health Research Agency and the Medicines and Healthcare Regulatory Agency will be crucial in improving the current system. That is an important point, because it was the relationship between the MHRA and clinical trials that at times caused problems.
The problem is that the existing regulation and governance pathways, which evolved in a piecemeal manner over several years, have now become dysfunctional. Although new regulatory bodies and checks have been introduced with good intentions, the sum effect is a fragmented process characterised by multiple layers of bureaucracy and uncertainty in the interpretation of individual pieces of legislation and guidance. This has produced a lack of trust in the system along with duplication and overlap of responsibilities. There is no evidence that these measures have enhanced the safety and well-being of either patients or the public, so the answer lies in now creating a Health Research Authority with multiple functions in order to go forward.
Baroness Warwick of Undercliffe
My Lords, I declare an interest as chair of the Human Tissue Authority, whose work is affected by the review of arm’s-length bodies and is referred to in one of the amendments. The desire to streamline the governance and regulation arrangements to support high-quality research underlies both the Government’s intentions and the amendments relating to the new Health Research Authority. These are laudable aims which I certainly support and which the HTA also supports wholeheartedly. Researchers want to get on with their research, and from their perspective what is important is that they see a seamless end-to-end and proportionate process for regulation and governance. The HTA has always striven to do exactly that within its focused regulatory remit relating to research while ensuring that the interests of the public are protected. But transferring the HTA’s work in research to the new body, as Amendment 260A proposes, may undermine these aims. I want to focus my brief remarks on that point.
The Department of Health clearly has favoured an option to keep all the HTA’s functions together, including research, and will consult on that basis shortly. I believe this is to a large extent because of the HTA’s track record of collaborative working to ensure that the regulatory burden on researchers is minimised. I would be happy to provide a range of examples dealing with NRES, the MHRA, the HFEA, tissue banks and clinical pathology accreditation, but in the interests of brevity I certainly will not iterate them now. Suffice it to say that, in the absence of detail at this stage about how the HRA will operate, it would be premature to make decisions now in haste that we may live to regret later. However, I will briefly set out three reasons why I believe that the HTA’s research functions should not be part of the Health Research Authority.
Nursing
Baroness Warwick of Undercliffe Excerpts(12 years, 5 months ago)
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Baroness Warwick of Undercliffe
My Lords, I thank the noble Baroness, Lady Emerton, for providing this opportunity to highlight this crucial aspect of our national healthcare provision. Her distinguished leadership and experience in the nursing field give enormous weight to her observations today. She is a doughty advocate for the nursing profession.
There cannot be anyone in this House who has not at one time or another had cause to be grateful for excellent nursing care. However, we may also know of, or have experienced, less than compassionate care, or even neglect or indifference, from overstretched nursing staff. Like others, I am horrified by some of the stories that have appeared in the media, and we cannot ignore the shocking failings uncovered, for example, at the Mid-Staffordshire NHS Trust. Sadly, it would be wrong to suggest that the unfortunate cases that hit the headlines are entirely anomalous or isolated incidents. Indeed, it seems that not a week goes by without another story revealing a lack of care and compassion and arguing that standards are falling.
Some of those who claim this most vociferously blame the lack of compassion on the move to make nursing a degree-level profession. Like the noble Viscount, Lord Bridgeman, I want to focus my remarks on the area of nurse education. I want to challenge most strongly the line put forward in the media—and, indeed, on occasion in this House—that some of the recent instances of lack of care are because nurses are now all graduates and consider it beneath them to clean bedpans or clean after the vulnerable and sick in their care. The “too posh to wash” arguments favoured by newspaper columnists do not stand up.
Studies in England, Scotland and Northern Ireland have shown that graduate nurses spend longer hours working in clinical areas than their non-graduate counterparts. American studies have found that graduate nurses stay in the profession, on average, four years longer than non-graduates and, in addition, they tend to stay at the bedside more often, working with older people and those who are terminally ill. US research—it is a shame to quote only US research but there is very little research in this country on this area—has also noted that graduate nurses acted more independently and took more responsibility for their professional judgment.
The point I wish to make is that there is not, and should not be, a distinction between professional academic head on the one hand, and caring heart on the other. As the excellent report, Front Line Care, asserted last year:
“Truly compassionate care is skilled, competent, value-based care that respects individual dignity. Its delivery requires the highest levels of skill and professionalism”.
The core values of care and compassion do not change even as nursing becomes more demanding and complex. The challenges that nurses face today require higher degrees of skill and a more well-rounded preparation. Indeed, Front Line Care urges:
“To ensure high quality, compassionate care, the move to degree-level registration for all newly qualified nurses must be implemented in full … There must be greater investment in continuing professional development.”
I strongly support this position and I hope that the Minister, in replying, will confirm that the Government do too. Nurses practise in increasingly complex clinical and social environments.
The decision in 2009 that all new nurses must hold a degree-level qualification to enter the profession from 2013, was made with the aim of increasing skills, and training a medical workforce capable of operating in a more analytical and independent manner. I believe that making nursing a degree-level profession is the way to ensure high-quality front-line patient care. Currently, one in four nurses has a degree as their highest qualification, and I believe this must grow. As the noble Baroness, Lady Emerton, reminded us, this would merely enable us to catch up with Wales and Scotland and several countries in Europe and elsewhere—indeed, as well as with other professions.
I believe that it is a mistake to view being academically qualified and being a caring professional as somehow incongruous. This is not assumed in medicine or clinical psychology, so why should it be in nursing? Compassion is vital, but it is not enough; nurses must also be well educated to deliver safe, effective care. All nurses need to put quality care at the centre of what they do, but they also need extensive knowledge, analytical skills and experience to work in a variety of settings.
I know that universities strive to ensure that students entering the profession have the right blend of personal, caring attitudes along with the necessary knowledge and practical skills to deliver high-quality, evidenced-based nursing care for patients. This is why, as the noble Baroness reminded us, half of university-based education programmes at both degree and sub-degree level continue to be delivered on the ground, in health practice. Of course, there can always be improvements, and I know that universities and hospitals themselves are striving to make those improvements. But education and training must not stop at the point of registration. It must continue to consider post-qualification pathways for recently registered nurses, and recognise the importance of both multi-professional training and continued professional development.
Many noble Lords have raised the importance of education and training in a reformed NHS as the Health and Social Care Bill goes through Committee, and we have been reassured that the Government will give this area due weight and consideration on Report. Will the Minister reassure us today that, in its plans in the Bill for ensuring the continuation of appropriate education and training across the health professions, and developing a well educated and compassionate workforce, the new system will ensure continued professional development?
My final point is to echo some of the points made by the noble Baroness, Lady Emerton, that front-line nursing care is being severely threatened by the £20 billion efficiency savings target set by the NHS. The Royal College of Nursing's Frontline First campaign has been monitoring cuts in NHS services and posts since July 2010. Its analysis of 41 trusts in England has highlighted the fact that registered nurses and healthcare assistants account for 34 per cent of the posts earmarked to be cut. On average across the 41 trusts, 8.3 per cent of qualified nursing jobs appear to be lost. The RCN cites these findings as evidence that trusts in England are making short-term cuts to meet the efficiency savings target. So, despite Government promises that there would be no cuts to front-line NHS care, clinical services and staffing levels are indeed being severely affected. At the same time, we know that English SHAs are cutting the number of pre-registration nursing places they fund. Last week, it was reported that nursing courses in London would be reduced from 2,000 to 1,580 after NHS London decided to withdraw funding. Estimates earlier this year suggested that course places in England for 2011-12 would be cut by 9.4 per cent compared to the previous year. These cuts to existing posts and to new entrants will have potentially disastrous consequences for patient care. So it is important for the Minister to address the issues of cuts and places in his reply.
The need to provide skilled care for people with many different conditions will continue to grow; we must have sufficient nurses, and our nurses must be properly equipped and supported to provide that skilled care.
Health and Social Care Bill
Baroness Warwick of Undercliffe Excerpts(12 years, 6 months ago)
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Lord Patel
I should also tell the noble Lord that his laparoscopic training is also historical because robots are used now.
I have brief comments, but I shall focus particularly on the amendment in the name of the noble Lord, Lord Warner, that refers to the need for informatics to be properly established to promote research in healthcare. One of the key areas in biomedical and clinical research in the UK is focused on translational research, as other noble Lords have said, to try to get research into clinical care.
Informatics plays a key role in our ability to do translational research. There are three domains of informatics in biomedical research—biomedical informatics, medical informatics and translational research informatics. Translational research informatics is about getting multidisciplinary research into clinical practice, with clinical trials being the first step to it. As we have heard, we have notable successes from our medical research into clinical translation. I say with hesitation that we think we are leaders in the world, but we are not quite the leaders—although we come pretty close. However, we can do better, and to do so we have to have what is required to promote research and its use into translation. Therefore, we will have to develop all three domains and incorporate what we already have—health information involving the medical records to which the noble Lord, Lord Warner, referred, and the development of electronic medical records. I know that other amendments address that issue. We should also be able to carry out statistical analysis.
The noble Lords, Lord Willis and Lord Warner, referred to the rapid sequencing of the genome—whole-genome sequencing—that will impact on the whole of medicine. Recent rapid developments in DNA sequencing technologies have dramatically cut the cost and the time required to sequence a human genome to a point that it will soon be easier and cheaper to sequence each patient’s genome and keep it in their notes. Every time they are diagnosed with or treated for a disease, a genome will be used to extract information. By combining that with our advancing understanding of genes and diseases, whole-genome sequencing is set to change the current clinical and public health practice by enabling more accurate, sophisticated and cost-effective genome testing.
Understanding the health impact of individual genomic variance presents a considerable challenge for analysis, interpretation and management of data. Managing that data will require bioinformatics to be established. The NHS should urgently develop clinical bioinformatics expertise and infrastructure to ensure clinical technical support for medical analysis and interpretation of genomic data. The amendment of the noble Lord, Lord Warner, that includes informatics is crucial in identifying that. If we are to succeed in applying the results of our research to patient care, we need to establish all these issues.
I should briefly mention Amendment 74 in my name. The noble Lord, Lord Willis, mentioned research in public health, as did the noble Lord, Lord Turnberg. My amendment relates to Clause 9 on,
“Duties as to improvement of public health”,
and the functions of local authorities and the Secretary of State as to improvement of public health. The amendment merely tries to,
“establish promotional research, and acting on research evidence into the causes of ill health”.
It is important that local authorities recognise that public health directors should be involved in research in the agenda that is being developed in the prevention of disease. Those are my brief comments.
Baroness Warwick of Undercliffe
My Lords, I was really pleased to see Clause 5 extend the duties of the Secretary of State with regard to research and its use. Clause 5 is a necessary acknowledgement of the extremely important role of medical and scientific research in ensuring that we deliver high-quality healthcare. The noble Lord, Lord Willis, and other noble Lords have spelt out graphically the dependence of improvements in treatments on research.
In his response to questions raised at Second Reading, the noble Earl, Lord Howe, repeated the Government’s assurance that a culture of research and innovation would be embedded in the structural changes to the NHS proposed in the Bill. It is a fine promise, but I am concerned as to whether the Bill in its current form is able to deliver this in practice. The lack of detail or clarity across the Bill about the role of and commitment to research in the reformed NHS has been noted by a number of noble Lords. For this reason, Clause 5 needs to be stronger and more explicit.
Embedding research across the complex NHS system requires proactive, top-down, leadership. Clause 5, as it currently stands, does not define how the Secretary of State would provide such leadership. Acknowledging that such research needs to be promoted stops short of an active commitment to promote research, or indeed of saying what that action would look like.