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My right hon. Friend the Member for Islwyn (Mr. Touhig) asked about people with certain disabilities not being able to hear or see what was happening on the television. The emerging technology group in the Department for Culture, Media and Sport has been considering talking Members—[Laughter.] I meant talking menus—Members do nothing but talk. The group has been considering talking menus and talking electronic programme guides, and officials have had a number of constructive discussions with the Royal National Institute of Blind People about that. I know that good progress is being made, but I am not in a position now to say exactly what is happening at the moment.

The hon. Member for Berwickshire, Roxburgh and Selkirk spoke about boxes becoming obsolete. If anyone eligible for the help scheme finds that their existing boxes become obsolete or stop working, they will be eligible for help under the scheme. In other words, they will get a box either for £40 or for free. In general, when older boxes become obsolete, as technology in this area does at an increasingly rapid rate, people will just have to stump up for that themselves.

More than 7 million people throughout the UK will be eligible for help if they want it. The help scheme will be rolled out in each TV region as switchover approaches. I was glad to hear the hon. Gentleman describing the work being done in his area. Every eligible person in a region will be contacted by post directly at their home three times in the run-up to switchover. The scheme will provide a comprehensive service that includes the provision of easy-to-use equipment, installation and practical advice and assistance.

There was discussion of Sky pay TV and the Sky packages. The hon. Member for Bath mentioned that people on the help scheme are written to two months after the box has been installed and asked whether they want to continue to get all the free digital television and radio channels that they are currently enjoying. I want to make it clear that the help scheme has put in place very strict restrictions on the practice of up-selling, with the result that help scheme participants will receive Sky marketing material only if they have explicitly chosen to do so. Sky itself has said that it has no desire to send people unwelcome marketing material.

The hon. Gentleman also mentioned return-path technology. I thought that the Department’s emerging technology group was still considering that issue; he says not. Again, my officials will have to clarify that—I am afraid that the hon. Gentleman will receive a raft of letters from me after the debate.

Mr. Foster: The Minister may find it helpful to know that I asked the Secretary of State to place the minutes of the various meetings in the Library and that what I have referred to is those bits of the minutes that are not blacked out. Unfortunately, large chunks of the minutes have been blacked out, as the Minister will see, so I have given my interpretation of what it says, which is that the decision has been taken not to go ahead.

Barbara Follett: In addition, Digital UK has entered into a contract with Digital Outreach Ltd to deliver community outreach services across the first four TV transmission regions. That is designed to help people who are not eligible for the help scheme but who nevertheless may have difficulty in switching to digital. It will provide
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information and training to volunteers and charity staff, and organise meetings and events in the run-up to switchover.

I commend Digital Outreach, which is a not-for-profit company set up by three leading national charities—Age Concern, Help the Aged and Community Service Volunteers—and Collective Enterprises Ltd. They have been doing great work in the Selkirk area. Any lessons learned in that area about interaction between the various help providers will be examined with great care. I would welcome any feedback that the hon. Member for Berwickshire, Roxburgh and Selkirk has, because obviously we want to ensure that these things work in other areas in the future.

Given the shortage of time, I shall not say as much as I had hoped to about the help scheme in Selkirk. The hon. Gentleman touched on most of it. He expressed some concern about how low the take-up was. There are approximately 19,000 potentially eligible people in the Selkirk transmitter area, and I understand that virtually all have now been contacted at least once if not twice. The help scheme has had responses from 5,700 or about 30 per cent. of them, and about 2,300 of those have opted in and 3,400 have opted out.

There may be many reasons why take-up is relatively low, but it is not at all clear at this stage that that is anything to worry about. Many people will have already decided to adopt digital TV of their own accord, and others may have decided that they are quite capable of doing so without the aid of the help scheme. The help scheme is there as a safety net, and I am glad to see that it is operating. It is keen to receive further responses and is in the process of sending out two more reminders to eligible people.

The hon. Gentleman is concerned that not all his constituents will get six mux—multiplex—coverage after switchover. He describes the three mux coverage as “Freeview Lite”. Across the Border TV region as a whole, only 51 per cent. of households can currently receive digital TV through an aerial; after digital switchover, that will increase to 98 per cent. Of these households, 53 per cent. are predicted to receive the full Freeview line-up of 48 channels; elsewhere, 20 channels will be available. The first point to make is that the so-called Freeview Lite service means that the hon. Gentleman’s constituents will be able to receive 20 of the most watched channels. That includes all the public service broadcast services currently available, plus a good deal more. Of course, digital terrestrial television is only one way to switch to digital. There are many alternatives, which I personally have to use, living in a hilly area. In particular, people who want more channels may choose from a range of free or subscription satellite services offering 90 to 400 channels. The BBC and ITV have launched Freesat; there is also Freesat from Sky. As the hon. Gentleman is aware, the Government and Ofcom are committed to ensuring that digital coverage for public service broadcast services substantially matches current analogue services—covering 98.5 per cent. of UK households—at switchover.

I understand the hon. Gentleman’s concern about the proposed restructuring of regional news in the Border and Tyne Tees areas and the impact that that could have on local TV coverage, but he will have to raise that with the TV companies themselves.

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The hon. Gentleman also spoke about the need to ensure that rural areas benefit from the digital dividend. We need to work on that to ensure that everyone gets the same service—

Mrs. Joan Humble (in the Chair): Order. We must move to the next debate.

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Rare Medical Conditions

11 am

Dr. Doug Naysmith (Bristol, North-West) (Lab/Co-op): As always, Mrs. Humble, it is a pleasure to serve under your chairmanship. I am grateful to Mr. Speaker for granting me this debate, as it will provide a welcome opportunity to discuss with my colleagues the needs of patients who suffer from rare and complex medical conditions.

I emphasise that the Government’s commendable policy of making the national health service more locally accountable should not prejudice the interests of people with such conditions, as they have requirements that need to be planned and provided for regionally and sometimes nationally. Many of these conditions are severe, genetically determined and sometimes life threatening. They include cystic fibrosis, some myelomas, Gaucher disease, paroxysmal natural haemoglobinuria—PNH—and muscular dystrophy. However, many of us, or our friends and families, could need specialised services for severe burns, spinal injuries or serious mental health problems, to take only a few examples. Those living with rarer cancers often encounter similar problems receiving care as do those with other rare medical conditions. Examples include some brain tumours, soft tissue and bone cancers, and HIV-related malignancies such as Kaposi’s sarcoma.

The point of listing these conditions is to emphasise the fact that rare conditions and specialised services are not unusual curiosities, but are to be found at the heart of what makes our NHS special. For that reason, those of us with an interest in the treatment of rare and complex conditions were delighted by the Government’s decision to ask Sir David Carter to review the commissioning of specialised services. In an impressively coherent report, published in 2006, Sir David recommended that 10 specialised commissioning groups should be set up at regional level to plan and procure services catering for populations of more than 1 million, and that the constituent primary care trusts should pool budgets to pay for the procured services.

Indeed, on 8 January, the Prime Minister said:

That risk-sharing aspect of the NHS was one of its fundamental features when it began 60 years ago. Another feature apparent then was a commitment to research and the development of new treatments and technologies. That makes it all the more bizarre these days that when effective treatments become available, often developed within the NHS, they are sometimes denied to patients on the ground that they cost too much.

Considerable progress has been made towards implementing the Carter reforms in the two years since publication of the report, and that should be recognised. However, specialised services seem to have a habit of moving to the periphery, and there has been a worrying lack of recognition of the Carter principles in a number of recent Department of Health documents. For instance, there is no mention of them in the next stage review final report or in “High Quality Care for All”, nor are they mentioned in the draft NHS constitution. Furthermore,
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because small patient numbers requiring individual services means that the cost of treatment tends to be high, it puts rare and complex conditions in the thick of the current debate about top-up fees and the like.

As my hon. Friend the Minister knows, I am a strong supporter of the National Institute for Health and Clinical Excellence, and a firm believer in its role as an arbiter of the clinical effectiveness and cost-effectiveness of medicines—and, I hope, increasingly of other forms of treatment. However, if we used cost-effectiveness as the sole criterion for decision making, the NHS would rapidly lose public support—for example, palliative care could instantly be discontinued, and heart and liver transplants could be at risk. Indeed, NICE’s citizens council has constantly found that large majorities are in favour of society taking care of those in greatest clinical need. The Secretary of State’s directions for NICE cite clinical need and innovation as factors to be taken into account alongside clinical effectiveness and cost-effectiveness. However, the directions on clinical need and innovation are not explicitly recognised in NICE’s recently revised document on social value judgments. Surely all the Secretary of State’s directions should be adhered to when decisions about the funding of treatments are taken by NICE, PCTs and other bodies?

On the subject of exceptional cases and exceptional case panels, procedures for assessing exceptional cases were originally established to consider the funding of treatments that could be of debatable clinical benefit, such as tattoo removal, breast enlargement or hair transplants. In order to receive funding, patients had to establish clear clinical benefits, such as the alleviation of severe suicidal depression. However, with the advent of new high-cost treatments for a number of rare conditions—for example, some of the rarer cancers that NICE cannot assess because a drug has not been licensed or because it is waiting in a queue—primary care trusts are increasingly using exceptional case procedures in order to assess whether or not such patients should receive treatment.

The clinical benefit of such treatments is often not in doubt, which means that it is difficult for patients to prove that they are exceptional. In many such cases, it is clear that the procedures are being used to assess whether the treatments are cost-effective—something that they were not designed to do and which they are ill-equipped to undertake. That is not satisfactory, and the Rarer Cancers Forum has pointed out some of the drawbacks. For example, 3,000 patients make a request for exceptional funding every year, of which a large proportion—2,200—are approved. However, those patients first have to navigate a confusing system that has no common term to describe exceptional cases to help the panels that assess them. Indeed, exceptional cases are varyingly referred to as “underfunded” or “non-normal” treatments, or even “case-by-case” requests; and the panels are sometimes referred to as “priorities panels”, or “commissioning advisory groups”.

There are huge variations in the number of exceptional applications made to PCTs and in the proportion of applications that they accept. One PCT received 180 applications over 20 months, whereas another received only one. Likewise, some PCTs approved all applications and others approved none. There are differences in how PCTs deal with exceptional case procedures: some have panels to assess treatments and others do not; some of those panels are dominated by administrators, and others
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include a majority of clinicians. In addition, some PCTs use social criteria, such as whether a cancer patient has children, in order to determine whether a case should be approved; and others do not.

We need to make improvements to ensure that the NHS does not progressively become a body that fails to provide health care based on clinical need rather than ability to pay or some other criterion, and that applies particularly to patients with rare and complex conditions. Despite the rapid recent growth in NHS spending, affordability will always be an issue. The NHS will always have a limited pot of money, and we have to accept that it cannot fund everything. However, the existence of a NICE threshold for cost-effectiveness, which has changed little for 10 years, must be contributing to the current pressure for top-up fees.

Some positive things are happening, which should help in future. For instance, some substantial savings for reinvestment will be made from a generation of blockbuster drugs that are due to come off-patent in the next few years. The Department of Health and the pharmaceuticals industry have recently come up with a few innovative approaches to risk sharing that enable patients to access new products earlier in their life cycles.

It is easier to draw attention to problems than to provide solutions, and I am conscious that I have done the former so far, so I shall conclude by listing a number of things that I believe need attention if we are to put things right. The aim is to introduce fairness and transparency into the current systems for specialist commissioning.

First, I hope that the operating framework that is due out later this month will help to complete successful implementation of the Carter report on specialised commissioning. Secondly, the NHS’s proposed right of access to local services should be extended to include specialised services. Thirdly, the Secretary of State’s directions to NICE on clinical need should be actively adopted by NICE and throughout the NHS when taking decisions that affect the funding of treatments. Fourthly, the Department and NICE should explore ways in which to recommend a treatment for use in the NHS, even when it does not have product licence, on the basis that it can be used to treat a biologically similar condition. I realise that proposal is complicated, but it is worth exploring.

Fifthly, there is a need to encourage collaborative working between PCTs, which is already happening in many places. A poll by the NHS Confederation in June showed that more than three quarters of NHS organisations believed that PCTs should work together nationally or regionally when deciding which expensive drugs or treatments should be offered to patients. Finally, as the Select Committee on Health has frequently recommended, it would be helpful if NICE evaluations could be speeded up. I know that there is a willingness in both the Department and NICE to do that, but progress, interestingly, is remarkably slow.

I look forward to hearing what my hon. Friend the Minister has to say on those very important matters.

11.12 am

Steve Webb (Northavon) (LD): I congratulate the hon. Member for Bristol, North-West (Dr. Naysmith), my constituency neighbour, on securing this important
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debate and on the thoughtful, measured and well-informed way in which he opened it. I agree with the thrust of what he said, and I am grateful for the opportunity to participate. I have recently been made aware of the work of the Rarer Cancers Forum by meeting a constituent who is affected by some of the problems that the hon. Gentleman spoke about. Briefly, I should like to describe my constituent’s experiences and draw some conclusions about how the system is working or, more to the point, not working.

My constituent, Robert Derrick, is in his mid-60s; he is a father and grandfather who lives in Charfield in my constituency with his wife, and who runs a small business. He could be any of us. Last year, he saw a surgeon in Gloucester because it was clear that something was not quite right. The surgeon suspected bone cancer, but in June 2007, he was diagnosed with kidney cancer and had a kidney removed. In October 2007, he had a knee and part of a femur removed. He went through the wars but, interestingly, made a good recovery. He still runs his business, which I believe involves transfers for vintage motorbikes, and he is keen to go on doing so. We have a correspondence, and I met him and his wife on Friday. He has had kidney cancer, but one would not necessarily recognise that he was ill.

In June 2008, he was admitted to Gloucester hospital bleeding from the lungs, and was diagnosed with inoperable metastases on both lungs, at which point the system started to go wrong. The family spoke to the consultant, who told them that they can have two drugs, one on the NHS and one not. The drug that is available on the NHS is called Interferon. In Mr. Derrick’s circumstances, it offers a poor quality of life and works for only one in six people; it might, with luck, give him another six months. The consultant said that Sutent, the other drug, should work well. The family wrote to me to tell me that their impression was that the consultant had told them that Mr. Derrick could expect to lead a normal life on Sutent, so there is a huge contrast between the drugs.

Sutent and associated treatments cost £4,000 a month—no-one pretends that that is not a lot of money—and the family were told that the NHS would not pay for it. The consultant said, “Every time I get a patient who would be appropriately treated with Sutent, I fax a request to Gloucestershire PCT, but it has told me to stop doing that because it has an exceptional funding process.” If the consultant referred everybody who he thought would benefit from the treatment, by definition, they would not be exceptional, so the PCT told him to stop making requests. He replied, “All my patients are exceptional, so why should I look at 10 people who come through my door and privately make a decision to pick this person or that because they are somehow more exceptional than the other nine? That is not why I came into medicine.” When Mr. Derrick and his wife went to see him he said, “There’s no point me even applying for this drug, because the PCT will just say no.” Understandably, the family were unhappy.

When approached, Gloucestershire PCT said, “You haven’t asked for or applied for the drug, in this case, for this patient, so we haven’t yet refused.” Having been told to apply, we did so. The family wrote in, the consultant said why Mr. Derrick would benefit and I
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wrote letters of support. The PCT had a meeting and decided not to fund the treatment, which is probably not surprising. However, the meeting was held behind closed doors, and had I not told the family what date the decision would be made, they would not have known. They were not allowed to send anyone along, did not know who was making the decision, and there is no accountability for what happens behind those closed doors. Making what is literally a life-or-death decision behind closed doors, unaccountably, is a problem.

When the decision was made and the family came to see me on Friday, they said that they had not yet had an explanation from the PCT. I phoned the PCT on Thursday night, and was kindly sent a copy of the letter that explained things, which they were about to post. In the letter, the chief executive of Gloucestershire PCT wrote:

Mr. Derrick smiled at that pathetically weak phrase and said that it was the first time that he had had any sympathy from the PCT. We know that funding cannot be provided for everything and everyone, but we should all be treated with humanity and sympathy. The letter continues:

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