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Miss Ann Widdecombe (Maidstone and The Weald) (Con): I am deeply grateful for this opportunity to raise this issue in the House tonight, and I look forward to the Ministers reply. The issue is the refusal of primary care trusts up and down the countrybut in particular my own PCT, West Kentto fund the provision of Lucentis and Avastin for those who are losing their sight.
The national health service exists especially to make sure that nobody loses the ability to function in the most normal way if that is possible: to see, to hear, to have some degree of movement are all essential to function normally. They are neither luxuries nor lifestyle changes, but are utterly basic and essential. I cannot believe that the founding fathers of the NHS ever foresaw the day when that same NHS, which seems to find money for a whole lot of things that some would consider desirable but not essential, could not find money for that which is essential.
Miss Y does not wish to be named because she is a frail lady of pensionable age who does not want an enormous amount of press publicity flowing around her. Mr. X does not wish to be named because he is working and his employer does not yet know of his difficulties. For understandable reasons, he does not wish his employer to becomepossibly prematurelyalarmed.
Miss Y is well known to me. She is a pillar of the Maidstone community and a lady with whom I have worked on many a charitable project. In particular, she has shown tremendous initiative in co-ordinating a charity that helps to teach children English in the Ukraine. She helped to start it, and it continues to this day. Needless to say, she is a lady of great responsibility who has saved all her life. She has her own very small and modest flat and had saved to ensure that she would be able to meet the rainy days of her retirement.
I visited Miss Y at home and saw first hand the difficulties that she is now experiencing as her independence is snatched from her bit by bit because of a deterioration in her sight. She is losing the sight of both eyes. Members of the public often read the press and get the idea that there is a miracle cure and demand it, but what is crucial in this case is that her consultant recommended to her that she try Lucentis. She asked whether it would be funded. That was slightly before the National Institute for Health and Clinical Excellence decreed that the treatment would be licensed and she was advised that it would not be funded. Nevertheless, she applied. The consultant said that there was an urgency to her condition, so at the same time this pensioner lady began to pay from her savings for private treatment. That cost her
well in excess of £5,000 butand this is crucialit has been effective. It has arrested what had been a steady decline and gives her not much but something by way of sight. That reminds me of a lady who stood up at a recent meeting I attendednot about this matter at all; it was a general charitable doand said to me, Miss Widdecombe, do you realise that I can see you tonight only because I have paid for it?
Under no circumstances should we have such a system. People have always had the ability to opt out of the NHS because they preferred private facilities, but on this occasion, we are building up a picture of people who do not opt out, but are driven out because the NHS will not supply that which enables them to do something as basic as see. When I took up this ladys case with the PCT, it wrote back that her visual acuity was outside the accepted range, but that was because she had paid to ensure that it was.
Let me come on to the case of Mr. X. He is not a pensioner; he is only 39. He has a family of five and both he and his wife work full time. He suffers from proliferative diabetic retinopathy, but, combined with that, he also suffers from retinal vein occlusion. He is now losing his sight. The recommendation for Lucentis was again not made by him, but by his own consultant at Maidstone hospital as long ago as 2007. Mr. X was denied Lucentis.
Mr. X, who naturally enough lives in Maidstone, has had to travel to Southport every six weeks to receive treatment. I am sure that the Ministers geography is more than up to working out the distance between Maidstone and Southport. The treatment costs £465 and the travel has to be paid on top. He has to take a day off work and, because his sight obviously limits his mobility, so, too, does his wife. They are supporting a family of five and they do not have the time to take off work. Mr. X is concerned for his future. He wants to go on working, but he cannot see that lasting for ever.
this man is too young to go blind
he needs assistance, and he needs it now.
Such assistance has still been denied. The most recent development is the PCT writing to Mr. X to tell him that the appeal panel has deferred the decision. The letter was so cold that I actually wrote back to the PCT:
I have seen more sympathetic letters from motor mechanics.
That, regrettably, is true, as there was no expression of sympathy and no hope for the future. Once again, a constituent has to pay to try to ensure that he gets what his consultant recommended in the first place.
Very rarely, if at all, do I quote in this House anything to do with my other role as a columnist for the Daily Express. I did, however, write about the provision of Lucentis when the newspaper was running a campaign on behalf of the war veteran, Jack Patch. As a result of the huge publicity, his PCT backed off and he is now getting his treatment, but I was flooded with letters from other Members constituents expressing dismay that they were going blind and could not get the treatment funded, so had to pay for it themselves to avoid going blind.
As the Minister well knows, if people are allowed to go blind, the costs to the state are horrendous. Mr. X will cease work, so he will not be productive from the age of 39 to 65 when he otherwise would have been. He
will require benefits, and he will get them, as he will qualify for them. He will require all manner of additional care, and it will be forthcoming. Therefore, it does not even make economic sense to let people go blind instead of ensuring that they retain their sight for as long as possible.
To go off trackI do not expect the Minister to answer this pointI recently read of a lady who went progressively deaf and who has a young child. She was told that a cochlear implant would solve the problem, but that her PCT would not fund the admittedly considerable cost of such an operation. In a 21st century health service, we have people who are not enabled to see, and people who are not enabled to hearI reckon Nye Bevan is probably turning in his grave.
Many years ago, when I was shadowing one of the Ministers predecessors, I predicted that NICE would turn out to be extremely nasty. That is what NICE has turned out to bevery nasty indeed. We are talking about real people, whose illnesses are real. The solutions have been proposed by consultants, not witch doctors, and yet they cannot get help. Will the Minister consider urgently what can be done for people such as the two constituents in different situations whom I have mentioned, and for all those others whom I am not directly representing tonight?
The Parliamentary Under-Secretary of State for Health (Ann Keen): The right hon. Member for Maidstone and The Weald (Miss Widdecombe) deserves credit for securing the debate. Her concern about such issues is well known. If she will bear with me, I will make some remarks about aspects of the working of NICE and the NHS in general, before addressing her specific points.
I am pleased to pay tribute to all NHS staff. The right hon. Lady has expressed her concerns passionately tonight, but I am confident that she would also wish to congratulate staff in the main on their work, especially those in the West Kent PCT area and in Maidstone and the Weald.
All of us would be greatly concerned were there any risk to our sight or to that of our loved ones. My mother had dry macular degeneration, for which no treatment was available, and I watched her sight and quality of life deteriorate. There are approximately 26,000 new cases of wet age-related macular degeneration every year, and it is the most common cause of sight loss in people aged over 60.
We can only try to imagine the worry of someone who is at risk of losing their sight. We all want access to the best treatments available. Understandably, there is a lot of interest in this area, especially as the development of new treatments potentially offers hope to more patients than in the past. Many are helped and treated successfully.
To provide the best possible services for NHS patients, we have a duty to ensure that new treatments used in the NHS are both clinically sound and cost-effective. That is why NICE was established in 1999. I need to remind the House of the purpose of NICE and the importance of its role, as it has had great achievements and helped many people.
NICE was established as part of a range of measures to tackle the variations in prescribing practice across the country. Before NICE, guidance was issued by numerous bodies at national, regional and local levels, which was confusing not only for patients but, most
importantly, for clinicians. The lack of coherent guidance was in part responsible for the variation in prescribing practice across the country. I am sure that the right hon. Lady is aware that NICE issues robust, evidence-based guidance on the clinical and cost-effectiveness of new and existing treatments. It has already recommended the use of photodynamic therapy for treating wet age-related macular degeneration in some patients. All PCTs are required to fund such treatment in accordance with that guidance.
I am sure that the right hon. Lady knows that NICE is currently appraising Lucentis and Macugen for the treatment of age-related macular degeneration, and that draft guidance for the NHS was published earlier this year. That guidance recommended Lucentis, subject to a number of clinical criteria, but not Macugen. However, my Department has made clear in good practice guidance for the NHS, published in December 2006, that funding for individual treatments should not be withheld simply because NICE has not issued final guidance.
Miss Widdecombe: Miss Y has already paid for her treatment; Mr. X wants continuing treatment to be paid for. Are there any provisionsmy local PCT seems to think notfor reimbursement when people would have qualified had the rulings been known earlier?
The guidance advises NHS organisations that until NICE has published final guidance on a treatment, they should continue with local arrangements for introducing new technologies, based on an assessment of the available evidence. The guidance also identifies potential sources of information to help PCTs to make such assessments.
When the local NHS decides not to fund a treatment, the patient and the clinician can expect an explanation. To underpin that, the Government will require PCTs to establish clear and very transparent arrangements both for local decision making on the funding of new drugs and for consideration of exceptional funding requests, and to publish information on those arrangements. That is laid down in the draft constitution which we published last week.
Lucentis and Macugen are licensed treatments for wet age-related macular degeneration. Doctors can prescribe Macugen or Lucentis in advance of NICE guidance if they believe that it is the right treatment for their patients, subject to funding from the PCT. When Lucentis was licensed in January 2007, services for people in West Kent with wet age-related macular degeneration were commissioned by the south east coast specialised commissioning group. To ensure equitable access for all patients on the south-east coast, the group commissioned the local health policy support units policy recommendation committee to give guidance to commissioners on the most cost-effective delivery.
Owing to the significant differences between preliminary NICE guidance issued for consultation in June 2007 and the policy recommendation committees guidance, a review of both guidelines was undertaken by the south east coast specialised commissioning group. The group recommended the use of Lucentis rather than Macugen, while maintaining the previous eligibility criteria.
In the last few minutes of my speech, I want to concentrate on the right hon. Ladys constituents, Mr. X and Miss Y. I am totally sympathetic to the concerns that the right hon. Lady has raised about those two specific cases. I have been assured by South East Coast strategic health authority that such cases are considered by individual treatment panels, which always have at least one member who is a clinician. Each case is considered on its merits, and without setting precedents for future claims. Treatments may be inside or outside the national health service.
Individual treatment panels were established in West Kent in consultation with all health community partners, primarily to consider funding for treatments for named individuals owing to their exceptional clinical circumstances and exceptions for treatments excluded by the PCTs clinical policies. West Kent PCT confirmed today that the individual treatment panel would reconsider the case of the constituent referred to as Miss Y, and would write to her and her consultant once the panel had reached a decision.
I am exceptionally sorry that Miss Y has had to go through this trauma, which must have been very stressful for someone such as the lady whom the right hon. Lady has described. I am grateful to the right hon. Lady for raising the case with me; I am only sorry that she had to do so in this way.
In the case of Mr. X, I have this afternoon been reassured by South East Coast SHA that it will ensure that Mr. X has the opportunity now to meet the PCT decision makers and his specialist so that they can explain the rationale for the decision. It will also ensure that a specialist provides reassurance about the recommended treatment for his condition. I am led to believe that there is concern about the recommended treatment for the condition. Therefore, I would expect any patient to be reassured and to have a lot of support and guidance about possible future treatment, and not, of course, to receive a letter.
I understand West Kent PCTs position is that while it is sympathetic to the distress and anxiety of people within its area, it cannot fund an unlicensed and unapproved treatment when an effective and nationally recognised alternative for a condition is available, but the management of such communication is essential and I would have expected better from todays NHS.
West Kent PCT, like every PCT, has a duty to ensure that best possible use is made of taxpayers money to meet the health needs of its whole population. Decisions about individual cases must be based on all available evidence. The right hon. Lady would respect such decisions. It is the management of decision making that has caused distress to a young man with a young family.
I hope that I have been able to set out the importance of having a proper evidence-based approach to the introduction of new treatments, but how we communicate about new treatments and their management is important. If at any time the right hon. Lady feels that Mr. X and Miss Y are not receiving what I have stated tonight, I will willingly meet her and take an interest in both cases. I wish both of her constituents well with their future treatment.