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I understand that there are currently around 8,000 identifiable rare diseases. As we have heard, it is clearly not practical to plan and purchase separately for each of those, and as a result, the UKs approach has been to provide those specialist services around groupings of expertise, and increasingly that is becoming the case. In fact, the provision of specialist services in specialist centres is certainly not an innovation. The hon. Member for Wyre Forest commented on the fact that the Minister and I, who are both in the hot seat today, both trained as nurses. I am sure that she will join me in noting that,
even 30 years ago when I was training, the newest surgical services were provided on a regional basis and in specialist centres. None the less, the aim of the arrangements is to purchase specialist services, ensure fair access to clinically effective services where patient numbers are small and a critical mass of patients is needed to achieve the best outcomes, maintain clinical confidence, sustain the training of specialist staff, ensure cost effectiveness in provision and made the best use of scarce resources.
The hon. Member for Bristol, North-West rightly commented that local decision making should not prejudice the situation of people with rare or complex conditions and raised the fact that there is considerable variation in the applications to PCTs for exceptional cases. There are wide variations in the review of those and in the clinical input of those review panels and the decisions made.
What is causing the increasing concern that we are seeing among the public and in the press are these huge variations and indeed the lack of fairness and transparency associated with them. We must have right of access extended to specialist services. It is very important that people have confidence and trust in a system that is making what could be life or death decisions about them.
The hon. Member for Bristol, North-West also said that the Department of Health and NICE should work together better. I find it extraordinarily frustrating, and I think that my frustration will be shared by many people, that NICE and the Department of Health do not work more effectively together. It staggers me that everybody wants this process speeded up, to be more efficient and to be more transparent, but the continuing frustration is that that improvement never seems to happen. I am sure that the Minister will address the issue of why it takes so long to get what feel like quite simple decisions or simple actions taken to make this process work more quickly and more effectively for the patients involved; the delay makes me very impatient.
The hon. Member for Northavon (Steve Webb) highlighted the issue affecting one of his constituents and, as ever, personal experiences and personal stories are particularly poignant. He also mentioned another source of frustration, that Pfizer was prepared to share the cost of the drug that his constituent required, but that offer was not taken into account by NICE. I and many other people would like to see a much more common-sense approach taken by NICE. The fact that Pfizer would share the cost of the drug is relevant and should have some impact on NICEs decision making.
I would like to congratulate the hon. Member for Norwich, North (Dr. Gibson) on his excellent work on the Rarer Cancers Forum. However, although he has clearly felt a wave of socialism around the place recently, I would suggest that nationalising the drug companies might see a halt in any progress that has been made in the innovation and research carried out by them, particularly in relation to PNHI leave the full pronunciation of that condition to the hon. Member for Wyre Forest (Dr. Taylor).
The hon. Member for Wyre Forest rightly raised the issue of research, which had not been mentioned until that point. The hon. Member for Norwich, North talked about people with rare and complex conditions punching above their weight; I think that he is absolutely right that they do punch above their weight. Nevertheless, there are concerns about the lack of incentives within the system, not only for research but for diagnosis and treatment innovation.
The hon. Member for Norwich, North also talked about some obvious ways of saving money to pay for new and expensive treatments. I could feel a certain tensionan anticipationas we heard from him that the way that he would finally solve the problem was through paying for some of these drugs, which I well appreciate is not easy.
I would also like to congratulate the hon. Member for Blaydon (Mr. Anderson) on his work on muscular dystrophy. It was very useful to have the example of one particular rare and complex condition. He also highlighted the fact that, even within the group of people who suffer from a rare disease such as muscular dystrophy, that rare disease can itself be further split up, into even rarer subsections of the same disease type. It is very sad that the experiences of people with muscular dystrophy have been poor, in terms of the diagnosis and treatment that they have received. He then widened the debate away from the issue of drugs, which was the focus at the start of the debate this morning, into the wider and important societal and care issues surrounding rare diseases.
I would like to finish by asking the Minister to address a few a few points, in particular the view that was expressed that PCTs are out of their depth; the issue about their decision making on exceptional panels, and the significant issues that surround some of the ignorance among those in general practice, even if that ignorance is not surprising given that these conditions so rarely emerge. Nevertheless, the issues of training, education and, just as importantly, continual professional development are important and it would be encouraging to hear from the Minister what she is doing to ensure that those issues are addressed.
It is also of note that since 1997 there has been an increase in mortality for those people with rarer cancers. Although that increase can be partially attributed to the lack of knowledge among physicians of the symptoms of rarer cancers and also the late presentation of such symptoms, it would be interesting to know what the Minister is doing about this issue and whether she has any ideas in the pipeline about how to reduce the mortality for those people with rarer cancers.
The next point that I would like to make is that there is a European directive to incentivise the investment in research and development in orphan medicines for rare and life-threatening diseases, which I understand has had some success. Since its adoption, 22 products have received a marketing authorisation. Overall, that is still a comparatively low number, but given the disproportionately low survival rates for rarer cancers, does the Minister agree that more needs to be done to incentivise drug research?
Rarer cancers often require treatment by drugs that have not yet been approved by NICE or rejected on cost, requiring patients to plead the exceptionality of their case, as we have heard on numerous occasions. I know that we have heard a few figures, but perhaps we
have not heard so many this morning. I would like to give one other figure; 5,000 patients have been forced to demonstrate their exceptionality in the last 20 months, in order to receive cancer treatments that are not recommended by NICE. Of those 5,000 patients, 1,300 had their request rejected.
I think that it was the hon. Member for Northavon who said that what finally gets to people is this battling away against the system. Not only do they have to live with a rare disease and with the isolation that surrounds the fact that they have a rare illnessthere is fear and lack of informationbut they also have to do battle against a system that they do not entirely understand. In fairness to the Minister, I think that she would agree with me that that system is indeed not understood by her or by the Department of Health. The lack of fairness and transparency makes the situation even worse.
In the past, NICE has proposed an ultra-orphan drugs evaluation committee, to undertake an appraisal of medicine for very rare diseases. I understand that Ministers have received NICEs report on appraising ultra-orphan drugs and have concluded that it is not appropriate at this time to establish a separate appraisal system for such drugs. Perhaps the Minister could bring me up to date on that issue.
We have had a debate today on exceptional and rare conditions. Special cases require special treatment; exceptional medical conditions need exceptional treatment. I know that the Minister agrees with that view and has much sympathy with it. However, what we want to hear from her now is what action she will be taking.
I thank my hon. Friend the Member for Bristol, North-West (Dr. Naysmith) for securing this debate. He has particular knowledge and expertise in all House matters, but he has been consistent in holding a strong interest in the treatment and care of the wide range of patients who are unfortunate enough to suffer from a rare or complex medical condition.
My hon. Friend last raised this issue in the House in 2005, and he was kind enough to say that we have made strong progress in improving the overarching commissioning arrangements for specialised services, which I will mention in more detail shortly, and that patients are starting to see the benefits of those improvements. In fact, all hon. Members here today have congratulated us on that progress.
My hon. Friend made some important points in his speech and I will respond to his concerns as far as I am able to, given the time constraints that I now face. I commend the efforts of the Specialised Healthcare Alliance and its chairman, Baroness Pitkeathley, which has supported my hon. Friend in raising this debate The SHCA has actively engaged many of my predecessors and colleagues to advance the case for improvements in the treatment and care of those people with rare conditions, and it
continues to promote these causes vigorously and determinedly, with the help of stakeholders and sponsors. It is right to do so.
I thank my hon. Friend for his kind words about the Carter review of arrangements for the commissioning of specialised services, which was introduced in April 2007. The arrangements, which have been in place for 18 months, are making significant progress in improving the quality of specialised commissioning at regional and supra-regional levels and, as a consequence, are improving access to specialised services for local people. Parts of the country, including the area in which my hon. Friend serves, which had hitherto been notably weak in their approach to commissioning specialised services, have improved rapidly as a result of the Carter reforms. From next year, we expect that more services than ever before will be commissioned by specialised commissioning groups through primary care trusts pooled budgets. Additionally, the new arrangements allow the national health service to take collective and consistent action across the country to pursue areas of agreed priority. A good example is work now commencing in SCGs to plan for improved levels of renal transplantation, in response to the recently published report of the Organ Donation Taskforce.
Another example of the strengthened national approach that the national specialised commissioning group has delivered is provided in the agreement of all SCGs to adopt the unified commissioning approach in Target Therapies for the Treatment of Pulmonary Arterial Hypertension in Adults. Adoption of a national policy by all SCGs will mean substantial increases in investment by some of them to raise standards to those of the best and to provide a level playing field for patients across England.
Our world-class commissioning programme is designed to raise ambitions for a new form of commissioning that has not yet been developed or implemented in a comprehensive way anywhere in the world. World-class commissioning is about delivering better health and well-being for the population, improving health outcomes and, of course, meeting the huge challenge of reducing health inequalities. As part of the programme, a commissioning assurance system has been launched this year. It is a national system to hold commissioners to account, to reward performance, and to ensure that health outcomes improve. As the hon. Member for Southport (Dr. Pugh) said, we are running a pilot with the north-west SCG to design a national scheme for holding commissioners of specialised services to account, and for encouraging better co-operation and co-ordination between PCTs and SCGs.
Hon. Members may be aware that the Government have actively supported the provision of high-quality treatment services for many rare conditions and complex procedures through the arrangements. Some 40 highly specialised services are currently commissioned nationally through the national commissioning group. I approved the national commissioning from April this year of a proton-beam therapy service for complex and difficult- to-treat patients with rare cancers, and of an islet cell transplantation service for diabetic patients who suffer recurrent episodes of hypoglycaemia.
The Minister of State, Department of Health, my right hon. Friend the Member for Bristol, South (Dawn Primarolo), who has responsibility for public health
matters, released a statement last week that confirmed approval for the national commissioning of a service for paroxysmal nocturnal haemoglobinuriaperhaps I should have said PNH, as I obviously did not see those words coming. It will ensure a high-quality service for patients who would benefit most from high-cost drugs, which are estimated to cost some £25 million a year. The hon. Member for Wyre Forest (Dr. Taylor) raised that matter. I congratulate Dr. Peter Hillman, the professor who is leading the group in Leeds, and can say to the hon. Gentleman that, yes, the drug will be funded before the service commences in April. Dr. Hillman has been important in our making that decision.
Lord Darzis final report, High Quality Care for All, sets an important context that is as applicable to patients with rare or complex medical conditions as it is to patients with more common conditions. The report describes a health service that delivers fair, personalised, effective and safe care. Lord Darzi calls his final report an enabling document because it sets out more than 90 commitments from the Department of Health that will help the NHS to deliver high-quality health care that puts the patient at the centre of the organisation and meets the challenges of the 21st century. Its time is overdue. The time is right to bring quality into the NHS.
I am aware of colleagues inside and outside this Chamber who have discussed quality over the years. Since entering the House in 1997, my hon. Friend the Member for Norwich, North (Dr. Gibson) has chaired groups, in particular on cancer, and has described the way forward for the Rarer Cancers Forum. I have had the pleasure to be involved with him on that forum.
I was probably at the conference at which discussion of nationalising our pharmaceutical companies was doing the rounds, but the style of delivery of a speech at that timethings were put in a particular waydid not necessarily demonstrate the need for it. Of course, we are getting the huge co-operation from scientists and researchers that hon. Members have asked for today. I am sure that we all look forward to the return of the Human Fertilisation and Embryology Bill, when the House will be challenged by even more advancement of science. Nevertheless, it is necessary for us to deal with such matters.
The hon. Member for Northavon (Steve Webb) spoke about his constituent Mr. Derrick and the moving way in which Mr. Derricks daughter put the case for a particular drug that the National Institute for Health and Clinical Excellence is reviewing. I hope the hon. Gentleman will accept that it is not possible for me to
comment while the appraisal is taking place; however, I hope that this debate will be read in Northavon and that it will be helpful.
Steve Webb: I am grateful. Could the Minister discuss a matter for which she is responsible, and which the hon. Member for Bristol, North-West raised, which is the threshold that NICE uses for all of its appraisals? That is not an issue for my constituents specifically but for all our constituents. Could the Department look at raising the threshold to reflect increases in inflation since it was introduced?
Ann Keen: The consultation on the constitution is out. It includes some of the discussions that we have had today about NICE. I am sure that all Members are aware of the consultation and the effect that it will have. It is important that we as a House consider it.
My hon. Friend the Member for Blaydon (Mr. Anderson) mentioned a meeting in the Department with colleagues who brought constituents with muscular dystrophy. It was important that that meeting with officials was held at that time. My hon. Friend said that he has written to me. I can say to him before seeing the letter that I will meet with him, but also that I believe a review is necessary. Let me consider that in preparation for our meeting. The director of national specialised commissioning has been in discussion with the Muscular Dystrophy Campaign about its concerns, so some progress has already been made, but there is obviously more to do.
Specific points were raised by my hon. Friend the Member for Bristol, North-West about commissioning and the openness and transparency of PCTs. I believe that the constitution and the consultation on it will improve transparency. The differences that have been described today by hon. Members are not acceptable in a modern, national health service. We must address the points that were raised so powerfully in my hon. Friends contribution. We must work with NICE, which is independentits whole point is its independenceon the speed of delivery of what are obviously complex issues that are challenging to health clinicians, politicians and economists in the health field. I believe that every patient in the United Kingdom recognises that they have a national health service that is there to be a safeguard and to give treatment but also to do research. Bringing together the work of the NHS and the Medical Research Council will be only to the betterment of patients in the future, and future research and knowledge will be used effectively.
Mrs. Maria Miller (Basingstoke) (Con): Mr. Cummings, I thank you for your chairmanship of this debate, which is important for residents in my constituency and neighbouring constituencies. I thank the Minister for coming along today to respond to the debate. I welcome him to his new position and wish him every success in his role as a Minister.
The M3 motorway and network roads are at the heart of the reason why, over a number of decades, Basingstoke has become not just a great place to live, but a great place to run businesses. We have more than 60,000 jobs in the borough of Basingstoke and Deane, making it one of the top 10 centres for employment in the south-east. Many companies are located there because of our communication network, our highly skilled labour force and, importantly, because we have superb residential communities throughout north Hampshire.
We are proud to be home to many household name companies, including Macmillan books, Motorola, Sony, the Automobile Association, Game and Barclays: I could go on. The Prime Minister has recognised how important Basingstoke is and has recognised the opportunity it affords to the whole of the south-east of England and the role it could play in helping build the United Kingdom economy into the future. That is perhaps why it has been designated by Ministers as a business growth point, recognising the areas potential for sustainable economic growth. The South East England Development Agency has recognised the area as just one of eight diamonds for growth: it has been identified as such for its potential to drive economic growth both regionally and nationally.
On the housing side, the Government have set targets that mean that we are already building 1,000 houses a year in Basingstoke. I understand that they would like even more to be built in future, although I am not sure that market conditions or the residents will favour that demand.
The Government are right to identify the strengths of the community that I represent, but this can never be a one-way street. No area can accommodate the considerable scale of house building and business growth that is expected in my constituency without the necessary investment in local infrastructure and services. The motorway is the critical element driving the Governments focus on Basingstoke, both in terms of housing and business targets, yet local residents and local businesses who already use the motorway regularly, or live by it, are experiencing significant congestion and noise pollution. Noise pollution, particularly, has spiralled as a result of growth not just in Basingstoke and Deane, but throughout the south-east region.
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