(12 years, 10 months ago)
Commons ChamberWe have had a good debate so far, and I congratulate my hon. Friend the Member for Wells (Tessa Munt) on securing it and on providing an opportunity for us to draw attention to radiotherapy services in the NHS. I want to try to answer as many questions as I can. I understand that my hon. Friend will meet Department officials to discuss some of her concerns further. I hope that if any issues are not covered, they can be explored further there.
Radiotherapy is an extremely important form of treatment for cancer, which often does not get the attention it deserves. This debate has, I think, helped in that regard. It is more targeted than chemotherapy and less invasive than surgery, with new, faster and more precise technologies reducing side-effects and improving outcomes for patients. Radiotherapy is a significant component in the treatment of 40% of patients cured of cancer and for 16% of cures overall. It is also extremely cost-effective in comparison to other curative cancer treatments. Spending is at around £325 million a year—just 5% of the total spend on cancer.
For these reasons, I very much welcome the opportunity presented by this debate to correct a number of inaccuracies that have appeared in the press on this subject. Claims have been made that patients are being denied life-saving treatments because of the lack of access to CyberKnife. Those claims are both inaccurate and alarming, and I think they must cause great anxiety to patients. The truth is that CyberKnife is not a form of treatment, but a brand name of a particular type of equipment that delivers stereotactic body radiotherapy or SBRT. It is not the only technology available, as I shall explain further in a moment.
My hon. Friend talked about the figures, and I repeat the fact that one in four radiotherapy centres currently has equipment—not CyberKnife in every case—that is capable of providing SBRT. I understand, and this bears out my hon. Friend’s figures—
No. Many points have been put to me, and to be fair, I now need to respond to them.
Currently, eight centres are active in providing these services, but I recognise and appreciate the work my hon. Friend has done, and we will certainly need to review carefully the information she has presented tonight.
CyberKnife can deliver only SBRT and cannot deliver conventional radiotherapy. Large, expensive radiotherapy delivery systems such as these are purchased by public tender. After vigorous and rigorous evaluation of the many different systems available to deliver this treatment, many hospitals around the country have chosen systems provided by other manufacturers, as they enable them to provide flexible, accurate and cost-effective radiotherapy and radio-surgery services. The promotion of CyberKnife over other alternatives does a disservice to other manufacturers that are successful in providing equipment to trusts, and distorts the nature of the debate.
Let me be clear: timely access to high-quality radiotherapy for cancer patients in this country should improve cancer outcomes and survival. That is why we have made a commitment to expand radiotherapy capacity by investing about £150 million more over the next four years. That will increase the utilisation of existing equipment, support additional services and ensure that all high-priority patients with a need for proton-beam therapy get access to it abroad.
Significant progress has been made in improving radiotherapy services since the publication of the National Radiotherapy Advisory Group report in 2007. The collection of the radiotherapy dataset, which the hon. Member for Easington (Grahame M. Morris) talked about, has enabled us to establish more accurately than ever before the measure of the number of patients being treated with radiotherapy, and to identify and address unacceptable and inexplicable variations around the country. Almost all patients referred for radiotherapy treatment receive that treatment within the waiting time standards. This improvement in waiting times, compared with historical waiting times, saves lives each year. New modelling tools have been developed that allow local services to model the needs of their populations and to predict demand and ensure that they have capacity to treat all patients who will benefit from the treatment without unnecessary delay as demand changes over the years.
However, there can be absolutely no room for complacency, and we realise that more work needs to be done to identify why the variations that the hon. Member for Easington has talked about in terms of referral rates in some parts of the country have existed. The dataset shows that some variations in access rates between cancer networks persist, and there is currently lower uptake in certain parts of the north that cannot be explained by variations in cancer incidence. That new dataset allows local commissioners to examine their referral practices in detail, and I understand that networks in the north-east are looking at capacity and travel times to start to address the concerns that the hon. Gentleman has brought to the House tonight.
Access to advanced radiotherapy techniques needs to be improved, particularly intensity modulated radiotherapy. Experts estimate that around a third of all treatments given with the intention of cure should be delivered by IMRT. Some centres are already delivering at that rate, but many are far below it. All centres have equipment that is capable of delivering that technique and a national training programme has been rolled out. We now need to ensure that IMRT, as well as image guided radiotherapy, is offered to all patients who might benefit.
As we have heard, radiotherapy treatment involves the delivery of a dose of radiation to a cancer tumour. That dose is delivered to each patient in fractions or treatments and the number of fractions delivered varies with the type of cancer. The ultimate goal in radiotherapy is to deliver the treatment to the tumour with pinpoint accuracy, thus sparing surrounding tissue and requiring as few fractions, or treatments, as possible—in other words, to treat and cure more cancers with shorter courses of radiotherapy and fewer side effects. For that reason, radiotherapy is continuously evolving with innovations and the development of new techniques and technologies that move us increasingly closer to that goal, but those new developments need to be evaluated in clinical studies.
It is a challenge for providers and commissioners to keep up with the evolving nature of radiotherapy treatment and to ensure the evaluation and adoption of new techniques. The royal colleges and other professional bodies provide guidance to their members to assist the continuous update of clinical practice. Commissioners in turn need to ensure that they are aware of sources of updated guidance. The radiotherapy community in this country can be rightly proud of its ability to deliver clinical studies and explore the use of delivering radiotherapy in fewer fractions. Indeed, the role of the Royal College of Radiologists and the National Radiotherapy Implementation Group in producing such guidance is absolutely crucial.
Let me come back to stereotactic body radiotherapy, which is an important example of specialist radiotherapy technique. It allows radiotherapy to be given to smaller target areas in higher doses with fewer treatments. Its greatest potential is in its possible use as an alternative to surgery and, because of its precision, to treat and potentially cure cancers that would otherwise be untreatable. However, as has been mentioned, it is regarded as a novel technique and it provides a very high dose of radiation per treatment. With conventional radiotherapy, a patient might receive their dose over 20 to 25 visits, but with SBRT that dose is delivered in five or six. More treatments need to be delivered within clinical studies so that clinicians can carefully follow up in both the short and long term to confirm the efficacy of the treatment and study any side effects. Side effects have been mentioned in the context of drugs, but we need to be conscious that there can also be side effects from radiotherapy and not be so anxious to expose people to risks if we are not confident. We should apply the standards of clinical trials to this area. It would be wrong for this Government to promote any form of treatment before the evidence has been collected. Evidence is about more than just making speeches in the House—it is also about looking at the clinical evidence.
All new techniques, including advanced radiotherapy, need to be justified on the grounds of cost and clinical effectiveness. Last year, the National Radiotherapy Implementation Group, published guidance, which has been mentioned, on the use of SBRT, including a clinical evidence review, and concluded that there is a substantial evidence base for the clinical effectiveness of SBRT in early stage lung cancer for patients who are unsuitable for surgery.
There are about 1,000 patients in the country who would benefit from that sort of procedure. There are ongoing clinical trials examining the use of the technique for other cancers, but they have yet to confirm its benefits for those cancers. For that reason, the national radiotherapy implementation group recommended that any patient receiving SBRT should receive it in a clinical study to enable the evidence to grow, and at specialised centres treating high volumes of patients with the necessary quality assurance safeguards in place. The implementation of the recommendations cannot be rushed, and the welfare of patients should be paramount in the introduction and use of novel techniques. Staff must therefore be thoroughly trained in this technique.
My hon. Friend asked me to consider a number of issues. I will certainly undertake to examine the tariff programme to establish what more can be done to expedite it, but I should point out that it is no small task to introduce new tariffs in the NHS. In 2012-13 we are mandating the use of the necessary resource groups and currencies in regard to contracting for external beam radiotherapy, and that is an essential first step. I hope that when my hon. Friend has a chance to sit down with officials, they will be able to talk in more detail about the work that is being undertaken to make progress with the implementation of tariffs.
It is possible that there will be a significant increase in demand for this treatment in the coming decades, but many tumours will continue to be treated better with conventional radiotherapy, and in particular with intensity-modulated and image-guided radiotherapy techniques.
May I clarify one point? I understand that the group recommended the setting of a tariff, but that the Department of Health will not set it until 2014. There is an acceptance of the technology, but there is also a delay of two years, and in that time people might die.
There are already local arrangements for the contracting of these services. Specialist centres can use the opportunity to include people in clinical trials, so that we can demonstrate that this is a worthwhile treatment for many cancers. At present, the evidence suggests that it is beneficial only in the case of inoperable lung cancers. I hope that, as we progress, we shall be able to demonstrate that this is not the only technology, and that CyberKnife is a brand, not—
(12 years, 10 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
It is a pleasure to serve under your chairmanship, Mr Hollobone. I congratulate my hon. Friend the Member for Cardiff North (Jonathan Evans) on securing the debate and on setting out so clearly his concerns. I want to spend the rest of the debate trying to address the points he has made.
I certainly echo my hon. Friend’s comments about the excellent work that Lynn Faulds Wood has been doing over the years to highlight and raise awareness of bowel cancer, not least through her personal experience. This month, the first ever Government funded “Signs and Symptoms” campaign for bowel cancer has been launched and the pilot of the roll-out of flexi-sigmoidoscopy has also begun. The Government can therefore rightly claim to be taking these matters very seriously indeed and to want to see significant improvements in survival rates from bowel cancer.
My hon. Friend also talked about the fact that—this might come as a surprise to some people who listen to this debate or read it afterwards—private involvement in the NHS is not some creation that has occurred in the past 18 months. The interrelationships between the NHS and the private sector have been there right since its foundation and were a growing feature of it during the life of the previous Administration.
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.
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.
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.
In that context, will the Minister say that he deprecates off-script tendering arrangements, in which major manufacturers—in fact, multinationals—seek an arrangement with PCTs making them the sole supplier?
I will come to that part of my hon. Friend’s speech a little later, if he will forgive me.
New services associated with dispensing such appliances in primary care were introduced in April 2010—I stress that date—including emergency supply of appliances at the request of the prescriber, repeat dispensing service and, where pharmacies and appliance contractors choose, provision of appliance use, reviews and customisation of stoma appliances. Customisation—personalisation and greater choice—is an essential part of what we need throughout health care delivery.
The key point in my hon. Friend’s debate is sponsored nurses, the role that they play and possible conflicts of interest, highlighted by all hon. Members who contributed. There is concern in some parts of the industry, including companies in my hon. Friend’s constituency, which led him to write to the Minister of State, Department of Health, my right hon. Friend the Member for Chelmsford (Mr Burns).
My hon. Friend rightly mentioned patient groups and I pay tribute to their work.
Stoma specialists play a vital role, as we have heard, supporting patients adapting to a life with a stoma, which often involves a number of physical and psychological changes. Stoma care patients face a number of issues, many of which are still considered taboo and can lead to embarrassment and distress. Services provided by stoma nurses are therefore much valued, as we have heard today, by those receiving them.
I am aware that the employment of some specialist nurses is funded by some manufacturers of stoma products to support patients in hospital and in their own homes. That can also lead to concerns, which have been so well set out today, about potential conflicts of interest. Although I recognise the potential for conflicts of interest, my hon. Friend will forgive me if I repeat the code of professional conduct that he mentioned, because it is relevant to this point, and I will mention why it remains relevant.
The code states that nurses must ensure that their professional judgment is not influenced by any commercial considerations. Any concerns about professional conduct are of course within our framework of regulation of professional groups, which is a matter for the Nursing and Midwifery Council. As a result of my hon. Friend securing this debate, I have made further inquiries of the NMC and the Royal College of Nursing, asking whether they are aware of any concerns being raised. The answer was no. I suspect my hon. Friend would say that that is because they are not reviewing and monitoring this matter either.
I will follow up on the report published some years ago by the RCN, which my hon. Friend mentioned, because although it is a little bit out of date it clearly speaks to some of the issues that he talked about. I will go further than that, because officials have had discussions of the sort mentioned by my right hon. Friend, in his response to my hon. Friend’s letter of November 2010, with suppliers and trade associations on sponsorship. I understand that one prominent trade association, the British Healthcare Trades Association, is discussing the industry’s views with its members. We have yet to receive the final feedback on those issues from the industry. I hope that, through this debate, we can ensure that we get that response, because the Department will certainly want to see it.
The BHTA code of practice—another code of practice—for health care and assistive technology products and services states:
“No pressure must be exerted on the sponsored individual to favour the sponsoring company’s products over any other. At all times the products supplied should be that which the professional considers is best suited to the client’s needs.”
Clearly, the trade bodies themselves recognise that potential risk and have identified it in their own codes of conduct with regard to their members.
On localised formularies and tendering, I am sure my hon. Friend is aware of the pressures facing NHS organisations as a result of our ageing population, and the increased diagnosis and treatment of cancers that he mentioned. On top of that, the NHS obviously has to achieve the Nicholson challenge of £20 billion of efficiency savings by 2015 through a focus on quality, innovation, productivity and prevention. Every saving made from that is being reinvested in patient care to support front-line staff. As we move forward, it is very important that NHS procurement is undertaken at national, regional and local level via the NHS supply chain, regional collaborative procurement organisations and individual trusts. Some NHS organisations may also use formularies to form the basis of a recommended list of products for prescribers, which is intended to provide a sufficient range of choice to meet the clinical needs of most patients. They may also run tenders to acquire local supply of these products. Local formularies or tenders are generally prepared by multi-disciplinary teams and reflect, as far as possible, best clinical practice.
I understand the concern that the hon. Gentleman has about choice and I appreciate the importance that stoma patients often place on continuing to receive a product in which they have confidence. We want to ensure that patients are at the heart of the clinical decisions that are being made about them, which is one of the reasons that we want to see a wide range of products available through the drug tariff to meet different needs of individual patients. However, and it is important that I stress this, any local arrangements of the sort that the hon. Gentleman has described do not override the clinical judgment of the GP who is still free to prescribe products listed in part IX of the drug tariff to meet specific needs of patients. Any decisions to undertake local procurement activity rest with local NHS organisations—primary care trusts now, clinical commissioning groups in the future—and we expect them to act in accordance with the principles when they are exploring the opportunities for tendering.
When it comes to patient choice, we want to go further than that. As part of our commitment to this policy of any qualified provider, we identified continence services as a good candidate for the approach. We felt that the competition should be on quality and not on price.
Before the Minister concludes his remarks, let me again raise one question in relation to sponsored nurses. He referred to the code of professional conduct, which places the onus on the nurse. Nurses have to exercise independence of thought while knowing that their salary is being met by a commercial sponsor. Is it not the case that the position of those nurses would be enhanced if the Government were to ensure that there was a robust arrangement for the management of conflicts of interest, which manufacturers knew existed, rather than leaving all the onus on the nurses themselves? That is placing too much on them and not ensuring that the public are satisfied that we have the same processes for requiring management of conflicts that we require in other public policy areas.
The Government recognise that sponsored nurses provide a valued service. We have heard that very well expressed in this debate. There is a potential for conflict of interests. There are codes that provide a framework in which those decisions should be made. My hon. Friend has presented very clearly his concern on behalf of a range of patient groups that that is not working as well as it needs to. We have already indicated our desire to engage with the trade associations and we need to carry that through to its conclusions. We are looking forward to the response of the trade associations. I would certainly be happy to give further thought to the points that my hon. Friend has made during this debate. Our reforms are very much about ensuring that conflicts of interest are identified, managed and transparent. I hope that, as a result of this debate, we have brought this issue to this Chamber in a way that is very helpful so that we can move it forward after today.
(12 years, 11 months ago)
Commons ChamberI congratulate the hon. Member for Sedgefield (Phil Wilson) on raising this important set of issues. The subject is close to my heart as well, as a result of my previous experiences as a Back Bencher raising similar issues about how we can deal with chronic back pain and ensure that pain is not an afterthought and the forgotten issue in the NHS, given how much it can blight the lives of so many people. Before saying a little more about that, I want to do what the hon. Gentleman asked me to do at the end of his remarks and pay tribute to both the excellent work the NHS staff working in his area do, sometimes under trying circumstances, and the work Victoria and the other people he mentioned do through their contribution as volunteers and supporters of other patients.
The hon. Gentleman vividly described his own experiences, and in doing so he has helped to turn a spotlight on these important issues. We must keep in mind the excellent care and consideration he received—and has rightly praised so highly—from Mr Krishna and that team’s other specialists. Their work has made a difference to his life, as well as to the lives of many of his constituents and many other people. This is a clear example of the NHS at its best, and I join the hon. Gentleman in paying tribute to all concerned.
Often it is a patient asking how they can get involved that provides the spark that leads to the sort of voluntary activity the hon. Gentleman has described. I certainly have no difficulty in paying tribute to Victoria for asking that question of Mr Krishna, which became the spark that has ignited so much good work since.
I am aware of the hon. Gentleman’s ongoing engagement with the group since his surgery in 2008. His remarks again highlighted the value of patients who have finally found relief after long-term chronic back pain having the opportunity to talk to others who are still going through the misery of their condition, as that can reassure people about what can be done. The support group’s work shows the extraordinary value of having the voluntary sector and volunteers working within our NHS. He asked what we can do to strengthen that approach and replicate the idea further. The first question at last week’s Health questions was about what we can do better to support volunteering in the NHS. I said then, and I repeat now, that we are working closely with the association of hospital volunteer co-ordinators to make sure that NHS boards have the information they need to make the right decisions about the investments they need to make to support voluntary organisations. These may be small investments, such as providing a bit of time or a room where people can provide the valuable emotional and other support that he describes. That approach is very much at the heart of the vision in our report on volunteering in the NHS. One way we can see that go further is by ensuring that local NHS organisations sign up to the compact agreements on the voluntary sector, so that they are fully engaging with their local voluntary and community sector and making full use of that way forward.
I understand that the Tees Valley spinal support group holds quarterly meetings and I am told that they are attended by hundreds of people, which, again, underscores how important these groups can be. Perhaps most important is the fact that charity volunteers who have received spinal surgery are available to talk about these issues, as that can be hugely reassuring. There is also enormous value in developing this whole area of hospital volunteer schemes. As the hon. Gentleman rightly said, this support group provides an excellent example, and I will want to use it to illustrate the benefits of such approaches. That is why I am keen to make sure that these volunteering opportunities go further.
I wish to reflect a little further on some of the points that the hon. Gentleman made, and there is broad agreement about many of them. He rightly highlighted the huge impact that back pain can have on people’s lives, saying that we can do better on treating and preventing it. This is a serious issue for the NHS, for the people affected and for the economy and our society as a whole, and it is not just about the most extreme cases where surgery proves necessary. He rightly says that surgery is no silver bullet, but when one rehearses the statistics, as he did, one finds that in the number of working days lost to illness, musculoskeletal conditions come second only to mental health problems, with a price tag for the economy of £5.3 billion a year. That occurs through lost work days, poor productivity and, in the most serious cases, people being shut out of work altogether and facing a lifetime of incapacity and difficulty.
In the shadow of the statistics that the hon. Gentleman has rehearsed there are hundreds of thousands, if not millions, of people who have to cope with chronic back pain for many years. As he has said, some of these people are not given the opportunities they need to get the right support and the right treatment at the right time, so he was right to talk about the impact on the individual and about his personal experience, but there is also an impact on families, on relationships, on mental health and on a person’s well-being. For me, that points to the fact that when we think about health and well-being, we need to think bigger. He talked about holistic services that have an impact on poor health and tackle health conditions. That is very much part of what we are trying to achieve through some of the reforms to which he referred, so that improving mental health outcomes or issues to do with pain, for example, becomes not just about the Department of Health or the NHS but about what the Government, employers and many other organisations can do together. Occupational health is a key component of that.
I hope we can agree on some of the elements of the vision of what a society that actively promotes health and well-being looks like. Local communities, councils, the NHS and the voluntary sector, which has extraordinary power, should work together to begin to make a difference to the health and well-being of local people, and everything in the health system should point towards prevention. We should be able to say that the NHS is as good at preventing poor health as it is at treating it.
Let me say something about the need to ensure the integrated package of care mentioned by the hon. Gentleman. He listed some numbers and I would like to write to him about the numbers of spinal surgeons and so on, to give him a bit more detail on our thinking about how we can develop the NHS in respect of musculoskeletal conditions. There is a good story to tell and I want to set that out in more detail for him.
I also want to answer the hon. Gentleman’s important question about how reforms will support improvements in surgery services. In our view, the Health and Social Care Bill creates a number of the tools that will support continuous quality improvement in the service. The outcomes frameworks published for the NHS on social care and public health provide a greater opportunity for clarity and accountability and have been widely welcomed across the clinical community.
Let me answer the hon. Gentleman’s questions about what reform can do. Reform must allow much greater transparency so that we can see differences and variations in the service in different parts of the country. The publication of the health atlas is already driving commissioners to benchmark themselves against the best in the NHS. The use of tariffs will drive best practice in the services, too, and front-line staff will be empowered to use the clinical evidence—they know that this is the best practice—to deliver and commission the best possible services for their populations.
I thank the hon. Gentleman again for bringing this matter to the House tonight. He was right to want to praise the work of the spinal support group and the valuable contribution it makes to the lives of so many people in his community. I also praise the professionalism of the NHS staff who treated him and who treat his constituents. I am pleased to have the opportunity to put those remarks on the record and to endorse and underscore what he said.
Question put and agreed to.
(12 years, 11 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
I congratulate my hon. Friend the Member for Mid Derbyshire (Pauline Latham) on securing the debate and bringing this important issue to the attention of the House today, and on the way she set out the issue and spoke of her experiences and of those whom she represents. She powerfully made the case for the drug and, more generally, for the need to raise awareness in order to educate people and to ensure they take the right steps better to protect themselves from melanomas.
I want to make it clear that the Government’s commitment to improving outcomes for cancer patients, including people with malignant melanoma—the most serious form of skin cancer, as my hon. Friend said—remains unwavering. Our cancer outcomes strategy, which we published just a year ago, sets out our aims for delivering health care outcomes as good as those anywhere in the world. Our ambition is to reduce significantly the number of deaths from preventable and avoidable cancers. The strategy sets out actions to tackle preventable cancer incidence, improve the quality and efficiency of cancer treatment and services, improve patients’ experience of care, and improve the quality of life for cancer survivors.
I will start with prevention, to which some reference has already been made, because it is the really important aspect of this issue. Cancer Research UK has been running the SunSmart campaign on behalf of the Department of Health for a number of years. It is a national campaign that provides information and advice about skin cancer and sun protection, and it has a particular focus on young people aged 16 to 24, for the very reasons that my hon. Friend rightly mentioned. Its major activity in 2011 was a bespoke marketing partnership with T4 on the Beach, which is a popular music festival, I am told. At the event, about 3,225 people in the target audience were directly engaged by the campaign, and the evaluation showed that those who saw the T4 SunSmart campaign were more likely to report that they would wear sunscreen in the future—72%, compared with 52%. Clearly, there are lessons to learn from that for future campaigns in this area.
In reference to the intervention by my hon. Friend the Member for Stafford (Jeremy Lefroy), my hon. Friend the Member for Mid Derbyshire talked about sunbeds, and I draw her attention to the Sunbeds (Regulation) Act 2010, which came into force last April, making it an offence for sunbed businesses in England and Wales to permit people under the age of 18 to use sunbeds on their commercial premises. To reinforce that, we have been working with Cancer Research UK through the Department-funded “R UV Ugly?” campaign to raise awareness of the dangers of sunbeds and the benefits of skin checks. The campaign is being run in partnership with the company sk:n, which is providing free ultraviolet scans in its clinics across the UK.
That brings me on to early diagnosis, which is the next step in the process.
I intervened earlier on the hon. Member for Mid Derbyshire (Pauline Latham), regarding councils sometimes needing to be more aware of what they can do. Has the Minister any intention of asking councils to be more proactive in preventing sunbed use? That is perhaps a key question.
In England, one of the opportunities coming up as a result of the Health and Social Care Bill is the transfer of public health responsibilities to local authorities. Alongside the authorities’ other responsibilities for environmental health and trading standards, that brings both enforcement and education opportunities, which will be very important in making the existing regulations even more effective.
Earlier diagnosis is central to the strategy the Government have laid out, because if we catch more cancers earlier they will become more treatable. The SunSmart campaign has a website that provides information about how to spot the symptoms of the disease, and during 2011 it received more than 11,000 visits per month on average, peaking in June, surprisingly, with more than 21,000 visits. With a programme grant from the Department of Health, Cancer Research UK and the British Association of Dermatologists are working together on a toolkit to provide practical online support and training to help GPs with pattern recognition for skin lesions. The toolkit will be piloted early this year, before a planned national roll-out, building on the evidence base.
That leads me on to treatment. Once skin cancer is diagnosed, access to appropriate treatment, delivered to a high standard, is critical. Increasing access to cancer treatments is a goal that all Members who have contributed, or are listening, to the debate share. I pay tribute to my hon. Friend the Member for Mid Derbyshire for her campaigning work on behalf of a number of her constituents and other people, and I would like to set out the current situation in relation to ipilimumab. I am struggling with the pronunciation of that word, and I apologise; I do not in any way wish to denigrate the issue. It is really important to explain where we are, because the drug is being appraised by NICE for use in the treatment of stage 3 and stage 4 malignant melanoma. NICE has a rather difficult job, and my hon. Friend has fairly described the challenge it faces in coming to its judgments. NICE’s role is to provide the NHS with robust, evidence-based guidance on whether a drug should be available, on clinical and cost-effectiveness grounds. I would like to reassure my hon. Friend that NICE recognises that its work has genuine consequences and has an impact on individuals’ lives. It makes a great effort to ensure that clinicians, patients, and anyone with an interest is involved in its work. I will forward my hon. Friend’s speech to NICE and ensure that it sees it.
NICE published its draft guidance on both the clinical and cost-effectiveness of ipilimumab last October. My hon. Friend has explained that the document does not recommend the use of the drug by the NHS, and she has described, in no uncertain terms, the dismay and disappointment that she and others feel on behalf of the families and the sufferers. However, NICE has not yet finalised its guidance to the NHS, and I am sure that Members will appreciate that, because NICE is an independent body, it would not be appropriate for me to dictate to or direct it. What I can tell Members—I hope this will be at least a glimmer of light—is that Bristol-Myers Squibb, the manufacturer of the drug, has proposed a patient access scheme, and the Department has agreed that NICE can consider it. I understand that NICE will now ask its appraisal committee to consider the scheme as part of its reconsideration of the drug.
Until NICE publishes its final guidance, PCTs are responsible for making funds available on the basis of individual needs in their local populations. There is no excuse at this point for PCTs not to do that, and patients have a right under the NHS constitution to expect local decisions about the funding of medicines and treatments to be made rationally, following proper consideration of all the evidence. In addition, where a treatment is not normally funded, PCTs are required to have processes in place to consider exceptional funding requests if a doctor feels that a particular patient’s exceptional clinical circumstances would warrant such funding. To help PCTs make these difficult decisions, the Department has issued a set of core principles that should govern them.
That is the current regime, and when this Government came into office they decided to go further, as part of their coalition programme. We are delivering on a promise in our programme for Government to create a cancer drugs fund. In the first year of the fund we have provided £50 million, and from 2010 through to the end of the fund there will be £600 million. I will say a bit more later about what happens after the fund ends.
It is great to hear the Minister saying that we are looking to ensure that people can get new drugs, such as Yervoy. Does he agree that we must also ensure that PCTs, local authorities and the voluntary sector provide excellent palliative care to the terminally ill?
My hon. Friend makes a very important point. He will know that we received the recommendations of the palliative care review last year, and we are looking forward to making announcements on it in the near future.
The cancer drugs fund means that clinicians in England are now able to prescribe cancer drugs from which they feel patients would benefit, without restrictions simply on cost grounds. That goes back to the absolutely correct point made earlier by my hon. Friend the Member for Gillingham and Rainham (Rehman Chishti) about adding years, months and days to a person’s life, and ensuring that those days are not lost.
Up until last November, 10,000 cancer patients had benefited from the cancer drugs fund and clinical recommendations, with a number of them receiving ipilimumab through the fund. Strategic health authority regional clinical panels are using their clinical judgment. I understand the concern raised by my hon. Friend the Member for Mid Derbyshire about variation, but we are assured that there is consistency between areas, and if there is any evidence to the contrary, I urge her to share it with the Department so that we can pursue that.
On the cancer drugs fund in Wales, the devolved Administration have to make their own judgment about how to prioritise NHS spending, and in contrast to the UK Administration they have decided to reduce spending on the NHS.
My hon. Friend also asked about the future arrangements when the cancer drugs fund finishes. We want to find a way for patients who benefit from drugs provided through the fund to continue to do so, at a cost that represents value to the NHS and to our wider society. We are considering whether it would be sensible, after the fund comes to an end in 2014, to assess some of the drugs, including the one we are debating, under the new value-based pricing arrangements. A final decision has not yet been made on that, but I will certainly write to my hon. Friend as we get to a conclusion.
My hon. Friend drew attention to the potential wider costs of cancers such as melanoma. As we develop our value-based pricing system, it is important that we ensure that those wider costs are taken into account. We want a more systematic and transparent way of working, so that interested parties, including pharmaceutical companies, charities, Members of Parliament and the general public, are clear in advance about what factors can be taken into account and what supporting evidence will be needed.
I thank my hon. Friend for raising this issue. I hope that a glimmer of hope is provided by a new scheme that could allow NICE to re-appraise the drug and come to a different conclusion. We will now wait to see how NICE proceeds. It is absolutely right to use parliamentary opportunities such as this to raise awareness. It is by raising awareness that we will save lives, which is the bottom line.
(12 years, 11 months ago)
Written StatementsIn March 2011, I announced investment in the development of health and criminal justice liaison and diversion services of £5 million over the course of the year (2011-12). I am pleased to announce that investment in these services will be further increased to £19.4 million for 2012-13.
Liaison and diversion services aim to ensure that wherever offenders are in the criminal justice system, their health needs or vulnerabilities are identified and assessed and they are linked to appropriate treatment services. Information about their needs can then be provided to the police and courts to enable them to make informed decisions about charging and sentencing. Addressing their needs is also expected to contribute to a reduction in the likelihood of their reoffending. Liaison and diversion services will be accessible to all offenders—whether adult men or women, children and young people, and whether they have a mental health or substance misuse problem, learning disability or personality disorder.
Work over the past year has allowed us to set up a liaison and diversion network, consisting of 94 adult and youth pathfinder sites, alongside 10 police forces who are exploring the transfer of commissioning responsibility for health services in police custody suites to the NHS. These pathfinder sites are leading the way in developing how diversion services will work in the future, as well as understanding the costs and benefits they generate, to inform a decision about rolling out new services across the country.
Over the next three years, this network of sites will focus on developing an implementation plan which will include:
guidance on good practice;
quality standards and outcomes; and
work force development and training plan.
Increased investment will also allow selected pathfinder sites to test different elements of service provision, and will include looking at treatment-based options for sentencers as an alternative to custody for those with health needs or vulnerabilities. This testing work will be particularly important for developing a consistent service model and informing the set-up of the remainder of diversion services during roll-out.
The pathfinder sites are already providing information on their services which will contribute to the development of the business case (due for completion in early 2013), which will inform a ministerial decision on full roll out. We will also undertake a fuller evaluation to capture the best of local learning and explore options for making schemes available nationally by 2014. An evaluation of six existing youth justice liaison and diversion pilots has already taken place and the report from this work is due to be published early this year.
These services are integral to the delivery of the Government’s vision for the rehabilitation of offenders, as well as the cross-Government strategy on improving mental health outcomes, both of which were published last year. Both the Department of Health and Ministry of Justice are committed to this work, as reflected in both departmental business plans, and are working together to deliver liaison and diversion services across the country by 2014.
(12 years, 11 months ago)
Commons Chamber1. What his policy is on the use of volunteers in hospitals.
The coalition Government recognise the tremendous contribution that volunteers play in enhancing quality and experience in health and social care, including within hospitals. We are working with partners, including the National Association of Voluntary Service Managers, to strengthen this role during service reform.
Mr Speaker, may I wish you and the House a very happy and healthy new year?
I thank the Minister for his response. I recently attended the local volunteering awards in the West Middlesex hospital in my constituency. Almost 400 volunteers do great work for patients and the hospital. What financial assistance is available to hospitals to support these volunteering projects?
I very much agree with the hon. Lady about the need for NHS trusts to consider their stance on volunteering. Indeed, I suspect Members of all parties have visited hospitals and worked with friends organisations over the Christmas period and have seen the good work that volunteers do in our hospitals. Our aim is to make sure that NHS trusts and commissioners of health and social care have the tools and information they need to make good judgments about investing in volunteering. That was the purpose of the volunteering strategy that we published last year.
We all recognise the huge contribution that volunteers make to the NHS, so will the Minister take this opportunity to recognise the contribution of Clive Peedell, the co-chair of the NHS Consultants Association, who is taking part in Bevan’s run today, highlighting concerns among the medical profession about the impact of the dreadful Health and Social Care Bill?
I would certainly wish that gentleman well with his run. I am sure that the contribution he makes through that charitable act is one that will stand us all in good stead in due course.
Is there a conflict between the big society, volunteers and localism if major retail stores are brought into hospitals to the detriment of friends organisations?
My hon. Friend raises an important point. I am aware that it is a matter of concern that over a number of years some hospitals have chosen not to use the WRVS or friends organisations’ services. These decisions have to be made by local NHS trust boards, but the purpose of the strategy we published last year is very much to make sure that when the boards make these decisions they are focused on the benefits—the benefits of volunteering for the volunteer, the organisation and the patients.
What is the Minister’s assessment of the number of unpaid interns working in the NHS?
As far as I am aware, no assessment has been made to analyse the number of unpaid interns. What is very clear, however, is that when NHS organisations are using people to provide services as volunteers, that is clearly separate from what would be regarded as paid employment. That is clear in the strategy we set out last year and clear in the advice and guidance provided by the Cabinet Office as well.
2. What recent representations he has received on access by NHS patients to drugs invented and developed in UK laboratories; and if he will make a statement.
7. What research his Department has undertaken on the prevention of suicide.
The Department of Health funds the national confidential inquiry into suicide and homicide by people with mental illness. The Department is funding an investigation of self-harm, and the National Institute for Health Research is funding a range of further research relevant to suicide prevention.
The Minister will be aware that core funding for research into the causes, effects and geographical spread of suicide and its frequent precursor, self-harm, is essential. More than 200,000 people present at accident and emergency with self-harm. I am very concerned to hear that the ongoing funding for the multi-centre study of self-harm is potentially at risk. Will he agree to meet me and the research project leads to discuss this and ensure that that research continues?
The hon. Lady chairs the all-party group on suicide and self-harm prevention. She does a lot of important work in this House in that regard, and I would be only too happy to talk to her about research priorities in this area. The Government are examining the research priorities to support the new strategy, which we plan to publish in the near future.
I pay tribute to the hon. Member for Bridgend (Mrs Moon), who has done fantastic work on the prevention of suicide. It is not the Department of Health’s job to regulate the worldwide web, but what work has the Department done on examining the link between the watching of violent websites—and, indeed, looking at websites that promote or facilitate suicide—and the actual carrying out of suicide?
My hon. Friend makes a very important point, which has been raised by a number of charities, including Papyrus, during the consultation on the draft strategy. It is important to stress that the internet industry has been willing to engage in positive initiatives, not the least of which is Facebook and Google’s work with the Samaritans to make sure that whenever anyone types in “suicide” a link to the Samaritans always appears first. However, more needs to be done and we need the industry to tackle those darker sides of the internet to make sure that they do not prey on vulnerable people and do not peddle suicide.
Given the crucial role that the chief coroner was to have had in monitoring and advising the Department of Health on the incidence of suicide across the nation, will the Minister liaise with the Lord Chancellor to ensure that a chief coroner is appointed speedily and that powers are put in place quickly to make sure that this work can be done?
8. When he expects residents in Congleton constituency to benefit from investment in telehealth and telecare services by the NHS.
12. What steps he has taken to implement a flexiscope bowel cancer screening test.
The IT system to support the pilots of flexible sigmoidoscopy screening is under development and local bowel screening programmes will be invited to become pilot sites shortly. We remain determined to deliver our cancer outcomes strategy commitment of 60% coverage across England by March 2015.
The Government rightly chose two out of the three pathfinder sites to be in the north-east, at South of Tyne and Tees. When will the date be given for local screening centres to be invited to bid to become pilot sites and have patients as a future part of that bowel cancer screening programme?
We debated these issues before Christmas. I can confirm that advice to local bowel screening programmes on bidding to become pilot sites will be published shortly and the process of recruiting pilots will start this month.
13. What estimate he has made of the cost to the public purse of NHS reorganisation in (a) Birkenhead constituency and (b) England.
A BBC Essex investigation into Rushcliffe’s Partridge care home in my constituency has uncovered shocking allegations of abuse and neglect. Will the Minister urge the Care Quality Commission to step in now with an inquiry and take whatever legal action is necessary to protect the elderly residents? Will he meet me and my constituent Lesley Minchin who has a relative who has suffered as a result of what has been going on in the care home?
I certainly share my hon. Friend’s concerns. BBC Essex’s reports of abuse and degrading treatment in that care home are cause for concern. The CQC is due to publish a report shortly and I am certainly happy to meet my hon. Friend to discuss the matter further. The Government are determined to shine a light on abuse wherever it is found and to root it out of the system to ensure that people are treated with dignity and respect and get the care they need.
T3. Does the Health Secretary agree with the Prime Minister that our nurses need greater supervision by patients’ groups on the ward to ensure that they are doing their jobs correctly, or does he recognise the tremendous job that they and their professional clinical managers are doing despite the huge cuts that the Health Secretary has forced on their numbers?
(13 years ago)
Commons ChamberI congratulate my hon. Friend the Member for Burton (Andrew Griffiths) on securing the debate and on making his points so clearly on behalf of his constituents. I also congratulate him on demonstrating why Adjournment debates are so important: they give Members in all parts of the House an opportunity to bring issues to the attention of the public, and also to serve their constituents by bringing issues to the House in a way that requires Ministers to be accountable.
I am aware, from what my hon. Friend has said this evening also from my preparation for the debate, of the strength of feeling in my hon. Friend’s constituency. I noted his description of the contribution made by his local newspaper, the Burton Mail, in leading the campaign at local level. The 7,500 signatures to the petition that have been collected so far are an impressive indication of the extent of public support and concern.
Let me say a little about the national policy context, some of which I have said on other occasions. In February this year we published our mental health strategy, “No health without mental health”, which I commend to Members in all parts of the House and, indeed, to my hon. Friend’s constituents. Let me now make two specific points. First, we expect the treatment and care of patients to be provided in the environment that is most appropriate and therapeutic for the patient. Acute beds should of course be available for those who need them, and those in charge of services should always consult on the needs and wishes of patients when making decisions about community or hospital-based treatment. Indeed, 10,300 new patients with an early diagnosis of psychosis were engaged with early intervention in psychosis services this year, the largest number ever recorded.
A number of Adjournment debates in recent weeks have raised the issue of data on bed occupancy and the definitions on which they are based. I will not undertake to arrange a meeting, but I will undertake to ensure that work is done in the Department, which I will examine, to establish how well the data are collected and how clear they are.
I am very satisfied with the Minister’s offer, but may I suggest that the Audit Commission—the only organisation that seems to produce reliable figures—has a chance to look at what we have discovered in our trusts? As I have said, the figures that are given to us are not reliable where I am, and, as I have heard tonight, they are not reliable where my hon. Friend the Member for Burton (Andrew Griffiths) is either.
I will certainly try to ensure that the data sets that we have are robust, although the future of the Audit Commission is perhaps a moot point in tonight’s debate.
Let me now deal with the local situation outlined by my hon. Friend the Member for Burton and, in particular, the proposals relating to the Margaret Stanhope centre. It is important to stress that the proposals are currently the subject of public consultation, notwithstanding some of the concerns about the process that have been outlined.
I thank the Minister for speaking so well about our concerns, but we have little faith in the PCT and the way in which it has conducted itself in this consultation. A rumour is gathering pace in my constituency and locally that the PCT is now going to extend the consultation period past next month’s closing date, for perhaps another three or six months. I and many of my constituents believe that would be a cynical attempt to buy time in order for the furore to die down so that the PCT can plough on regardless of public opinion. Does the Minister agree that as all the facts are now on the record, the PCT must make a decision on the facts as presented and the time scale as already laid out?
I will certainly give some further consideration to that. I am not sure that I am in a position to give my hon. Friend the undertaking he wants tonight, but if new issues arise it is in the public interest to make sure they are properly understood. My hon. Friend has rehearsed a number of the key issues this evening, and although he is right that consideration is being given to extending the consultation period, that is not for quite as long, as he suggested. I believe the PCT has decided to extend it by three to four weeks. It must do that, as the public and my hon. Friend must have confidence in the process. I am sure that he will understand that in responding tonight what I cannot, will not and must not do is come down on one side or the other on the options being canvassed in the consultation or express a preference as to its outcome. As he will know, there are clear requirements in law in respect of significant service changes that ultimately allow for reference to the Secretary of State, and I must avoid fettering the discretion the Secretary of State might in due course have to exercise.
Staffordshire Local Involvement Network—the LINk—is overseeing this consultation, and it has facilitated sessions after the presentations at public meetings. It has not involved anyone from either the PCT or South Staffordshire and Shropshire Healthcare NHS Foundation Trust. The LINk will also oversee the analysis of the consultation, to ensure its results are presented objectively. There is an independent element, therefore. I hope that goes some way towards reassuring my hon. Friends who have spoken tonight.
Travel has been mentioned in passing, and it is an important issue. When PCTs and service providers consult on service reconfigurations of this sort they must properly consider travel times, distances and journeys. I am pleased to note that, certainly in terms of the environmental impact assessment, those matters have been brought into play, although I await to see from the outcome of the consultation whether they have been sufficiently brought into play.
The local NHS would say that the consultation is about the future direction of in-patient services in the area and further strengthening community services. We must remember that this consultation is not only relevant to mental health in-patient services in Burton, but that it covers Tamworth and Stafford as well.
Although the concerns raised tonight have rightly focused on the Margaret Stanhope Centre, the important wider issue of improving community mental health services must be kept in mind. That is why I come back to the concern about the impact of reducing the number of beds available in the area. There is a dispute between the NHS locally and my hon. Friend about whether that will retard local services’ ability to meet legitimate needs, or whether more investment in community services will meet those needs.
This has been an important debate because it has allowed my hon. Friend to set out clearly and cogently his concerns. The consultation is not yet concluded and there will now be some additional weeks in which further views can be gathered. Clearly, the campaign being run by the Burton Mail, with the support of many of my hon. Friend’s constituents, will be a factor that the PCT will need to take into account when making its decisions. I am sure that the health overview and scrutiny committee will also want to be satisfied when it draws its conclusions about whether the results of the consultation are safe and sound, and whether it supports a model that does posit the notion that there are many mental health circumstances where the mental health needs are better and more appropriately met in the community, although there is also a need to ensure that there is always a robust in-patient response where that is necessary.
With that, may I take the opportunity to wish you and others in this Chamber the compliments of the season, Mr Speaker? I thank my hon. Friend for raising these matters and I will come back to him on any details that I have not addressed this evening.
I thank the Minister for his good wishes, and they are warmly reciprocated.
Question put and agreed to.
(13 years ago)
Written StatementsI promised to update the House about ongoing activity in relation to Winterbourne View private hospital.
The House will wish to note that 10 people employed at Winterbourne View have now been charged with offences of ill-treatment and neglect under the Mental Health Act. They are due to appear in Bristol magistrates court on 15 December. A further three people who have also been arrested on suspicion of causing ill-treatment under the Mental Capacity Act 2005 remain on police bail pending inquiries.
PricewaterhouseCooper’s report on Castlebeck Care services was published on 25 November and Castlebeck has committed to taking forward all the action points from that report. The report can be found at:
www.castlebeck.com/docs/pwc_recommendations_ report.pdf
In October, I advised the House that the Care Quality Commission (CQC) had started its programme of unannounced inspections of services for people with learning disabilities. This review is now well under way—as at 2 December some 76 inspections had been completed. CQC is also carrying out around 1,000 inspections a month which include undertaking inspections where there are concerns that providers may not be meeting the essential safety and quality requirements
The first five reports from the focused learning disability inspections have been published today and can be found at www.cqc.org.uk/ldreview. We will, of course, ensure that the NHS and local authorities are continuing to take action required to address any concerns raised and review their own commissioning, care planning and oversight arrangements to support improvements and service transformation.
The results of the CQC inspections programme will feed into the wider departmental review of Winterbourne View. We are still gathering evidence from the serious case review and the NHS serious untoward incident review, and from other investigations and reports.
The departmental review is actively engaging with people with learning disabilities or autism and challenging behaviour and their families about how services can be improved. Ministers will report findings from the departmental review to Parliament and determine what further action is necessary.
I will continue to update the House as things develop.
(13 years ago)
Commons ChamberI congratulate my hon. Friend the Member for Spelthorne (Kwasi Kwarteng) on securing this debate and on setting out so clearly, on behalf of his constituents, the concerns that they have brought to him and the concerns that he, in turn, wanted to ensure the House properly addressed this evening. He is absolutely right: that is exactly what Adjournment debates are for. They are an opportunity for constituents’ concerns to be raised in this House, and I pay tribute to him for doing so.
My hon. Friend talked about the case of Charlie and the situation facing him and his family. He will understand that the necessity for patient confidentiality meant that until I heard his speech, I was not aware of that specific case from the briefing that I had to prepare for this debate. However, I hope that I can give him a response that will none the less address a number of the important points that he raised. As part of the preparation in advance of this debate, my private office supplied me with a copy of the postings on the Phedup website that talk about Charlie’s case. One can feel only strong sympathy for the concerns that my hon. Friend has raised on behalf of his constituents. As a 12-year-old boy, Charlie wants to be like every other young person growing up. He does not want to be different from his cousins. That point comes across clearly from the website.
I cannot deal with all the details, but I understand how important it is for children with phenylketonuria to be treated early and to receive the most effective treatment from the NHS. As my hon. Friend rightly said, the condition affects around one in 10,000 babies born in England. Those with phenylketonuria—or PKU, as it is more commonly known—are unable to break down the amino acid phenylalanine, which builds up in the blood and, critically, the brain. In most people with the deficiency, food is not broken down by the enzyme known as phenylalanine hydroxylase, or PAH—I will stick with the initials from now on, if I may. In people with PKU, the PAH enzyme function is impaired because of a genetic mutation. As a result, phenylalanine levels in the blood and other tissues rise, which can lead to brain damage and, in some cases, learning difficulties.
Without treatment early in life, the outlook for those with PKU is very poor. Most people will develop severe learning disabilities and will require constant care. With treatment, however, the outlook can be incredibly good. Since 1969, the NHS has screened newborn babies for PKU, so early detection is commonplace in this country. Following a low-protein diet and taking regular dietary supplements containing amino acids helps keep the phenylalanine levels low, avoiding the terrible damage that the condition can inflict on a person. Specially formulated low-protein foods and nutritional supplements are available on the NHS, and GPs are able to prescribe them to treat patients with PKU. As with any condition that requires constant management and attention from—
Thank you, Mr Deputy Speaker. I was not prepared for that procedural intervention.
As I was saying, any condition that requires constant management and attention from birth can be an incredibly stressful one, as my hon. Friend captured in his remarks. I appreciate how difficult it must be for children and their parents or carers to maintain the protein-free diet necessary for the majority of patients with PKU. From what I understand about the condition, children with PKU cannot eat many of the foods that we all take for granted. Some of the pleasures of life are not available to them, which makes simple day-to-day activities like going to school difficult. Again, I very much understand the desire to see a child living a life that is not different from that of their peers. That point was powerfully made, as I said, on the Phedup website when I looked at it today.
The Government recognise the importance of maintaining this diet. That is why a range of food and nutritional supplements are provided by prescription on the NHS. The committee responsible for approving these products definitely understands the importance of providing a range of products for patients and takes special care to make sure that these products are approved for NHS use.
This debate is primarily about the role of a new drug, Kuvan, and how it can change individuals’ lives if it is made available because of how it can deal with the problem of phenylalanine levels in children and adults with PKU. Kuvan is a synthetic form of a vitamin that helps PAH enzymes work better. However—here we come to what I fear is the important point—the drug is not believed to be universally effective. It works only in some cases for some types of PKU, depending on which precise PAH gene mutation is present. As I understand it, only about four in 10 patients are likely to benefit from it. As my hon. Friend said, the benefit is determined only after a month, and through a blood test. Kuvan is more likely to benefit those with the milder forms of PKU, and most people would still need to continue with their dietary treatment. The drug might enable them to eat a few grams of protein, but would not allow a complete reversion to a conventional lifestyle and diet.
Let me deal with the role of the primary care trust in all of this. PCTs are legally obliged to provide funding so that drugs positively appraised by NICE are available on the NHS. This includes drugs with European orphan designation. In the absence of NICE guidance—for instance, where NICE has not appraised a treatment or is in the process of doing so, or where NICE has not recommended a treatment for use on the NHS—the PCTs are responsible for making funding decisions based on the needs of their populations.
I understand that the Surrey NHS area prescribing committee has considered Kuvan and has taken a decision on the basis of the evidence not to make it available in Surrey. The panel, which included GPs and other clinicians, considered the available clinical evidence, together with supporting information from parents of children diagnosed with PKU. After full and careful consideration—my hon. Friend has quoted this—it concluded that there was insufficient evidence to support the use of Kuvan at this time.
Doctors can request treatments that are not usually funded on behalf of their patients through an individual funding request, if they feel that there are exceptional clinical circumstances. I understand that a further request has been made by the Great Ormond Street Hospital for Children NHS Foundation Trust. I believe it has led to further correspondence between the PCT and the trust. At the moment, the foundation trust has not supplied all the information necessary for the application to be properly considered. I hope that that information will be provided and that consideration will be given to those representations by the foundation trust. I shall also ensure that the report of today’s debate is made available to the primary care trust, so that its members can see for themselves the representations made by my hon. Friend.
Under the NHS constitution, patients have the right to expect local decisions about the funding of medicines and treatments to be made rationally, following proper consideration of the evidence. To help PCTs make those difficult decisions, the Department has issued a set of core principles. PCTs are required to have clear and transparent arrangements for local decision making on the funding of drugs, and for consideration of exceptional funding requests.
My hon. Friend asked how we could address these difficult issues in the future. We want to improve access, on the NHS, to innovative medicines that are effective, particularly those that can allow a fellow citizen to lead as normal a life as possible. We will do that by reforming the way in which companies are paid for NHS medicines, adopting to a new value-based pricing system when the current pharmaceutical price regulation scheme expires at the end of 2013. That will bring the price that the NHS pays more into line with the value that a new medicine delivers in terms of the benefits that doctors and patients gain from a drug. The aim of the new pricing system is to create a system that has the capability to include the broadest possible range of new medicines. When possible, we want to avoid creating different processes for different treatments.
I understand that some people with very rare conditions—including, I suspect, the one that we are discussing—who want to gain access to a particular treatment fear that their cases will not be considered fairly under the new system because they are among a tiny minority who would benefit in such circumstances. We will keep an open mind, and if, as we continue to develop our plans to implement value-based pricing, it becomes clear that some treatments for the very rarest conditions would be best dealt with through separate arrangements, we will consider those options.
I well understand the need for this matter to be raised in Parliament. I will ensure that the points that have been made today are taken up with the PCT as it gives further consideration to the case being advanced by the foundation trust and by the family. I assure my hon. Friend that the Government’s priority is to ensure that NHS patients, including those living with phenylketonuria, are able to gain access to the most appropriate treatments in order to manage their conditions.
My hon. Friend has raised an important point about the need to ensure that the quality of life is properly respected, and that, in the very rare cases of phenylketonuria, that respect is reflected in the provision of drugs that allow a child to enjoy a wider range of meals and, as a result, grow up as a normal child with a normal life. I hope that he feels heartened by the debate, and that, as a hard-working constituency Member of Parliament, he will be emboldened to pursue this matter further.
Question put and agreed to.
(13 years ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
I, too, am pleased to serve under your chairmanship, Mr Scott. I congratulate the hon. Member for Birmingham, Selly Oak (Steve McCabe) on securing the debate and on being so persistent in applying for it week after week until, finally, being successfully in the ballot for Adjournment debates. The hon. Gentleman is right to bring the matter back to the House for a debate and I am grateful to all hon. Members who have contributed. The personal testimony and the testimonies we have heard on behalf of constituents speak to the devastation that the condition can bring to families and the people who suffer from it.
A lot of statistics have rightly been rehearsed to illustrate those points as part of today’s debate. They are undoubtedly very compelling and, as has rightly been said, quite depressing. They show that although we have known for a long time what needs to be done, it does not appear to be implemented as consistently as it should be across the country. There are places that follow the NICE guidelines and consequently make a difference, but over many years other areas have failed to invest or see the matter as an area of priority. That is not a comment on previous Governments’ records, but an acknowledgement of the difficulty in an organisation as large as the NHS of ensuring sufficient focus on something as important as this.
The hon. Member for Hackney North and Stoke Newington (Ms Abbott) paid tribute to the work of the all-party group on epilepsy. I come across many APPGs in pursuing my ministerial responsibilities; they are, truly, an important part of how this Parliament makes sure that the voices of many seldom-heard groups—or groups certainly not heard often enough—are heard by Ministers and the Government.
I will try to ensure that I respond to all the points that have been made. I have been encouraged to speak for as long as is necessary to do just that.
Members have, very generously, given the Minister 40 minutes to reply to the debate, which is rather longer than Ministers usually have. Will he find time in that 40 minutes to commit to the practical, affordable remedies that have been urged on him by the many charities involved in SUDEP?
I hope to do just that, and I hope to do justice to the points that the hon. Gentleman and other hon. Members made in the debate.
At least one hon. Member—my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard), who initiated the debate we had about a year ago—has contributed to the debate on this issue again. The message I took from last year’s debate was clear, and I take it again today. There is a real sense that we need change in the system. We need change that delivers a real focus on issues such as epilepsy to ensure that clinicians and the service respond properly to the evidence, act on the evidence, and translate it into services that are fit for purpose. At the moment, the service continues to fail hundreds of thousands of people living with epilepsy, at a huge cost to them personally and to their families. When we debated these issues a year ago, there was some uncertainty about how the Government’s plans for reform would deliver improvements. I would like to spend a little time today setting some of them out.
In a moment, if I may. We have plenty of time. I just want to say something about the voluntary sector, and then I will happily give way to the hon. Lady.
The outlook for most patients with epilepsy is good—it is important to acknowledge that—but we know that more than 1,000 people die of epilepsy-related causes each year. Many of those deaths are due to accidents or status epilepticus, but a significant number of them are attributable to SUDEP—sudden unexpected death in epilepsy. The devastating effect of any epilepsy death cannot be overestimated and cannot be understated. I pay tribute to the many voluntary sector organisations that have been referred to in this debate. They work hard to highlight the challenge, and to ensure that the failings that have been described are identified and tackled.
I will come on to outcomes and information in a moment. Understanding the performance of our health economies, compared with that of other systems around the world, is an important part of how to ensure that we focus on what matters most to deliver change and improvement. I will talk about outcomes, data and variation in a moment, if I may.
I particularly want to acknowledge the work of Epilepsy Bereaved, which since its foundation in 1995 has led cutting-edge work to establish major risk factors and ways to reduce risks and prevent deaths. The charity provides very well-regarded bereavement support, which helps to break the isolation that people experience following SUDEP, or other seizure-related deaths. I acknowledge the organisation’s concerns that failings in care and the commissioning of services have led to many avoidable deaths from SUDEP.
In the 12 months since we last debated epilepsy services in Westminster Hall, we have made significant strides in putting in place the necessary arrangements to level the playing field in commissioning epilepsy services relative to other services.
That leads me on to the NHS outcomes framework. The hon. Member for Hackney North and Stoke Newington referred to the NICE guidelines and the role of specialists. One role that the NHS outcomes framework can play is to ensure that commissioners, providers and others are better able to identify those things that can drive up performance in the NHS. The publication of the first NHS outcomes framework marks the start of a journey for greater transparency and accountability for the outcomes that the NHS achieves for patients. It demonstrates a move from traditional input and output targets towards a focus on delivering better health outcomes for all. The framework includes a focused set of national outcome goals and supporting indicators that patients, the public and Parliament will be able to use to judge the overall progress of the NHS. A number of those goals and indicators are relevant to epilepsy. They will, of course, inform the Secretary of State’s mandate to the NHS commissioning board and, in turn, to the NHS commissioning framework.
Let me give a few examples of the relevant indicators. In domain 1 of the NHS outcomes framework—preventing people from dying prematurely—the overarching indicator is about mortality from causes considered amenable to health care. This debate demonstrates graphically that epilepsy is one of the conditions where there is plenty of room for significant progress. The hon. Member for Hackney North and Stoke Newington rehearsed the statistics, which are compelling. They point, very powerfully, to commissioners having to look at this if they are to deliver measurable improvement against that indicator.
Domain 2, enhancing quality of life for people with long-term conditions, speaks directly to the issues addressed in this debate. The overarching indicator is health-related quality of life for people with long-term conditions. It addresses such specific issues as the proportion of people feeling supported to manage their conditions. That speaks directly to issues such as care planning and case management. That indicator is not just in the NHS outcomes framework; it also sits within the adult social care outcomes framework, to try to align more joined-up thinking and commissioning on these issues. Improving functional ability in people with long-term conditions relates to ensuring that more people are able to stay in employment.
There are many other indicators. The aim of domain 3 —helping people to recover from episodes of ill health or following injury—is to capture information on patients’ journeys through the system. Domain 4—positive experiences of health care—will look at such things as patients’ experiences of primary care. My hon. Friend the Member for Blackpool North and Cleveleys described the conversations that should happen, and they should be captured.
The emerging commissioning landscape will contribute to improving not just epilepsy outcomes but outcomes across the board. In the past, commissioning has been too remote from the patients it is intended to serve. Commissioning decisions made by clinical commissioning groups will ensure that they are underpinned by clinical insight and knowledge of local health care needs, and, importantly, the perspective of the patient and family carers. Clinical commissioning at its best is a collaboration of professionals. The NHS commissioning board and clinical commissioning groups will be required to obtain clinical advice from a broad range of professionals with expertise in the
“prevention, diagnosis or treatment of illness”—
and in the—
“protection or improvement of public health”.
There is a real pull in the framework that we are putting in place to make sure that that happens. As well as promoting effective clinical leadership and multi-professional collaboration around specific conditions and pathways, we expect doctors, nurses and other professionals to come together in clinical senates to give expert advice from a variety of health and social care perspectives.
NICE has rightly been alluded to a lot. The Government intend to build on its strong track record by re-establishing it as a statutory body. It will continue to play a key role in the NHS through the production of robust, evidence-based advice and quality standards. I will address the issue of quality standards specifically. The hon. Member for Birmingham, Selly Oak asked about surgical interventions in the context of the work being done to produce quality standards covering epilepsy services. They have already been commissioned by NICE and will cover children and adults separately. I will pass on the point that was made about the need to address issues of transition, so that that is not overlooked in producing two separate quality standards. In the children’s quality standard, there is a specific need to address access to surgical interventions, and it will be addressed.
HealthWatch has its part to play, and will better enable people to help shape health and social care services, at both a local and national level, by providing a strong forum where the views and experiences of patients, carers and the public can influence the commissioning process and improve the quality of health and social care services. There must be a clearer split of responsibility—a sense of joined-up access across the care pathway to deliver a less fragmented and more person-centred approach to planning. We accept that care and support for those with long-term conditions is a particular area where we do not get it right often enough. Not only are patients confused but their care and quality of life are compromised, and it leads to inefficiencies and duplications in the system.
The hon. Member for Birmingham, Selly Oak asked me specifically about prisoner health. One of the opportunities that arises from the establishment of the NHS Commissioning Board is that it will be the commissioner of prisoner health. With it leading on such work, we are in a much better place to assure ourselves that the NICE guidance on prisoner health and epilepsy is properly and consistently applied throughout the prison estate. I shall certainly pass on any further information that I can to the hon. Gentleman.
I have listened with great attention to the Minister and, naturally enough, he has started with generalities, but the nature of Westminster Hall debates lies in the opportunity for Members to get replies to specifics, so I have three questions arising from the speeches today. First, do the Government intend to appoint a national clinical director for epilepsy? The hon. Member for Blackpool North and Cleveleys (Paul Maynard) asked specifically about people being able to talk about sudden unexpected death within a couple of weeks of diagnosis, but am I to take it that the Minister has no means to direct that and will leave it to commissioning groups to decide what is appropriate? Finally, are the Government prepared to commit to the explicit inclusion of epilepsy mortality in the outcomes frameworks?
The hon. Lady needs to be patient, because I still have quite a lot of sheets of paper and quite a lot of answers to give. Before I took her intervention, I had answered a specific question on prisoner health from the hon. Member for Birmingham, Selly Oak. I am trying my best to cover the ground.
I will deal with the national clinical director proposition. As part of the transition—the hon. Lady alluded to this—from a command-and-control system in which the NHS is directed from the Department of Health to a model in which the service is at arm’s length and directed through goals and objectives set to a mandate, the NHS commissioning board will be where national clinical directors sit. The national commissioning board will make the decisions on the precise configuration of those appointments. Clearly, that will be modelled on the approach taken on an outcomes framework, so that there is proper coverage of all its domains. That is as much as I can say today, and perhaps we need to have a further debate, but if she wants more information, I will happily write to her with more detail. I cannot say today, however, that there will be a DH-appointed epilepsy national clinical director, because that is the old world and we are moving to a new world, whether we agree about that or not, and in that new world the responsibility for making choices about the appointment of national clinical directors will sit with the NHS commissioning board. That is as clear an answer as I can give to her question. I will answer the others as we move on.
Assessment of need was mentioned in the debate and goes to the heart of a challenge for the charities. My experience over the past 12 months of talking to many non-governmental organisations that advocate on behalf of patient groups is that some see huge opportunities in reorganising themselves to get much closer to the new commissioners and to those who will shape priorities for local services at a local level, and they are looking to organise themselves accordingly. Others are finding it more difficult to think through how to organise themselves to do that, and are therefore looking to how they can use the old levers, encouraging the Department of Health to proceed through central fiat and direction. My job is to say that that is not how it will work and, if they expect that that is how things will happen, they will be sadly disappointed. The Department and I as a Minister are only too pleased to work with organisations to ensure that they can realise and exploit the full potential of the new arrangements such as the health and wellbeing boards, the clinical commissioning groups and their duty to engage with their public, their patients and carers. Organisations, including some of the epilepsy charities, need to think that through carefully.
Health and wellbeing boards will be the local system leaders and will drive joined-up health and social care services. They have a key role, with joint strategic needs assessment and joint health and well-being strategies, in which they understand the population need and future population need, and that in turn drives commissioning for populations and outcomes. Simply said, to ensure that those joint strategic needs assessments are rich and informed, charities in the sector have a part to play in the conversation, to ensure that their input is not lost. NICE clinical guidance and quality standards play their part as well.
The hon. Member for Birmingham, Selly Oak asked about research. Who could disagree—I certainly do not—that the case for more research is strong? Again, however, directing more research through ministerial instruction is not how we should proceed. That might get more research but it does not guarantee quality, which is why we have for a long time had the Medical Research Council leading, with independent peer review as the process for allocating research resources. As in many other spheres, the key is to ensure the crucial infrastructure to support quality bids in the first place—the better the quality, the better the chances of an increase in the resources. We saw that with dementia; the Government had a priority to invest more but did not achieve that simply by putting up a quantum and stating that “This is what we must now spend.” Simply, it is about putting in place the steps to ensure quality research bids in the first place.
The information revolution is another important part of delivering the agenda. Today’s challenge in providing high-quality care services cannot be met without effective use of information. At present, many people who use our health and care services do not get the information that they need and expect as part of the care process, which we have heard described graphically. We sometimes fail to meet the information needs of our clinicians and care professionals, so information is critical to our ambition to put people in the driving seat of their services and their care. Through the work of the NHS Future Forum so far, we are examining how to ensure that the information strategy that will be published fully reflects the various concerns expressed.
The hon. Member for Hackney North and Stoke Newington asked a specific question about whether the information provided in Scotland and Wales is available. The answer is yes. There are comprehensive information sources available on NHS Choices, including a guide to epilepsy that contains information about SUDEP and minimising risk. The use of things such as NHS information prescriptions and, as we develop more of them, tools to help patients and clinicians make decisions are ways of further strengthening that important notion of “no decision about me without me”.
The hon. Member for Newport West (Paul Flynn) talked about his constituents Gwyn and Gill Thomas, the tragic death of their daughter from SUDEP and how they felt bewildered and, I suspect, outraged that they did not get information on which they could have acted at the time. That has spurred them on, and we can probably find echoes of that in every constituency surgery throughout the country—people motivated by personal experience to ensure that it happens to no one else. The hon. Gentleman’s example of the case of Christina and the lack of knowledge of risk underscored the as-ever exceptional contribution of my hon. Friend the Member for Blackpool North and Cleveleys to today’s debate. By talking about his own experience, he illuminates a much wider and more important picture about the frailty of human beings and their reluctance sometimes, even when professionally trained, to engage in the conversation that they are paid to have, which ultimately is a conversation about life or death. We know that NICE has set out clear guidance on care planning and case management, which provides good evidence of how they can make a difference.
The guidance also talks about the role of epilepsy nurses, and the hon. Member for Hackney North and Stoke Newington asked how the Department helps with their availability. One of the ways we help is by ensuring that good tools are available for local business cases to be put to commissioners locally. We do not mandate from the centre a certain number of such members of staff, but we make it clear through the regulatory framework and other ways that the skill and staff mix of organisations has to be appropriate to the services that they are providing. There is as well a strong economic case for epilepsy nurses to be commissioned, because of how they can have that honest conversation with the individual concerned.
Another way we can play our part at national level in raising the profile of these issues and making commissioners think through how they commission services effectively is through the development of outcome strategies. We have outcome strategies for respiratory and mental health conditions, and I recently announced the Government’s intention to develop a cross-Government outcome strategy for long-term conditions. The purpose of the strategy is to take a life-course approach. It will draw on the Government’s approach in developing our mental health strategy. Shaping it will involve a wide range of stakeholders beyond the Government.
The hon. Lady rightly rehearsed the Prime Minister’s enduring interest in these issues, which spans the whole health sphere. That is why he continues to pursue and to follow closely the key work of Health Ministers in taking forward the legislation to reform the NHS. I will inquire about the correspondence and find out what has happened about that.
Reference was made to the Joint Epilepsy Council and its activities. I applaud its work, but I must make it clear that the future of our public services is in a local rather than a national context. For the NHS, it is not about running commissioning services for specific conditions from the Department of Health; it is about local clinical commissioning groups working locally with patient groups and others better to understand local needs and to ensure that they structure services with those in mind.
I accept the case that the Minister is trying to make for the new commissioning arrangements, but, like many of us, charities and help groups that work with epilepsy are not entirely clear about how the new arrangements will work. Does he have any plans to meet the epilepsy groups so that he can better explain his ambitions and how those groups will be able to play a central role in the new world that he envisages?
It was kind of the hon. Gentleman to intervene, because it allows me to answer his final question. The Department continues to work with the charities and to discuss their concerns, and I am happy to arrange a meeting to have such discussions.
I will give way to the hon. Gentleman while the hon. Lady frames her questions—she clearly has one or two—and I will then give way to her.
I have listened with great attention to the Minister. I am aware of his record in opposition as a doughty campaigner for many causes. The Government are obsessed with change and upheaval in health service structures. Can he provide some practical assurance that by the end of their term of office, if they go to 2015, there will be fewer sudden unexpected epilepsy deaths?
I have referred to the focus on outcomes and the establishment of an outcomes approach not just to commissioning services, but to how we measure the performance of services. That provides hope of an improvement. The issue is not just a high-level one. I have not talked about specific statistics today, but sitting behind each and every indicator in the outcomes framework for the NHS are hard metrics that are being used to identify variations between parts of the country. We have seen in other services—for example, cancer services—how powerful the publication of atlas data, which shows performance in different localities, is at challenging clinical teams and challenging commissioners to commission differently and better. I genuinely believe that that approach and the focus on outcomes and data are key drivers to improving future performance.
I have listened with great care to the Minister, who has been at pains to outline that we are moving from a world of command and control health provision to a world in which individual clinical commissioning groups will make decisions for their locality. Should the groups that are lobbying on epilepsy take from this debate a message that the days of lobbying at national level are effectively over, and that they must mobilise themselves to lobby commissioning group by commissioning group?
They must certainly be prepared to engage a lot more at local level. That is an important part of commissioning to fit the needs of postcodes rather than by prescribing from the centre and having postcode lotteries. It is not possible from so far away to be clear about the specific needs of a population. That is why the change is so important. However, the Department of Health expects and Ministers want to have a relationship with those organisations, because they can inform the shape of the mandate that the Secretary of State will set for the NHS. They can inform the way in which NHS outcomes framework, the adult social care outcomes framework and the public health outcomes framework operate, and their priorities. There will still be a rich conversation at national level about action, but there will be an even richer conversation about outcomes, performance and commissioning, which need to be local.
In conclusion, I am grateful to the hon. Member for Birmingham, Selly Oak for calling this debate and his perseverance in applying for it. He has rightly rehearsed a matter that has been neglected for too long. I believe that the Government’s changes, particularly our focus on outcomes and greater respect for clinical judgment at local level, will deliver improvements in services and quality of life, and indeed will save lives through improved commissioning at local level.