“We have not seen any evidence that the introduction of intercept as evidence would enable prosecutions in cases currently dealt with through Control Orders.”

Mr David Davis: I will put to one side one of the weaknesses of the Privy Council report, namely its assessment of the effectiveness of intercept in prosecutions, and take up the issue of control orders. When we eventually allowed the use of control orders, our presumption when in opposition was that they would allow the control of people who could not be prosecuted in the courts because the available evidence—in other words, intercept evidence—could not be used there. Now we are being told that such people are having their freedom removed on the basis of, in essence, suspicion, because there is nothing beyond intercept other than suspicion. Members on both Front Benches are in a Catch-22 situation: either intercept is effective in dealing with control orders, or control orders are being imposed on the basis of suspicion alone.

Diana Johnson: The right hon. Gentleman raises an issue that could be debated for many hours. I think that his first point—that evidence was available—is the correct one. However, a review has taken place and the view of the independent counsel, who was commissioned by the Home Office, is that what the right hon. Gentleman has said is not correct. I have only limited time left, so I will move on. We will have to differ on that.

The number of criminal cases in which intercept evidence might be used is limited. An independent survey conducted in 2004 concluded that allowing intercept evidence would secure no more than 20 to 30 additional convictions a year.

Under the current arrangements, intercept evidence is of significant use for the protection of national security and the detection of serious crime. The Privy Council’s report into intercept evidence gives an excellent summary of the importance of wiretapping to UK law enforcement agencies. Under the current arrangements, the UK is able to benefit from intelligence gleaned from wiretapping, without compromising intelligence capabilities. Wiretapping often facilitates the collection of other admissible forms of evidence.

The Serious Organised Crime Agency has stated that

“interception, together with communications data, is the single most powerful tool for responding to serious and organised crime.”

It is because the current regime is so successful that the Metropolitan police currently secure a conviction in 88% of cases where they have employed intercept evidence. It estimates that that would rise only to 92% if intercept evidence were to become admissible. The more sophisticated criminals become, the greater the need for more advanced detection techniques and the greater the need to protect those intelligence techniques.

Of course, we cannot discuss individual cases or the evidence involved in them in Parliament, but it is clear from independent studies that law enforcement and Security Service agencies have provided numerous examples of intercept evidence having been used to apprehend

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wanted criminals, seize drugs or stolen property, or alert law enforcement agencies of planned criminal activities, enabling them to gather the admissible evidence that they require. We must recognise the important role that wiretapping already plays in the fight against crime and terrorism, and the importance of not jeopardising that success. The Privy Council stressed its belief that:

“The overriding objective should be to promote national security.”

That has been the position of successive Governments, and is the position of the Opposition.

If there was an easy solution to this problem, it would have been produced, but there is not. I will touch on a few of the issues that have prevented previous Governments from allowing wire-tap evidence in court. I hope that the Minister will update the House on what progress has been made on each issue. How can we allow the use of intercept evidence in courts, while protecting the most sensitive information which, if made public, would reveal a particular intelligence technique or source, and while upholding the principle of the equality of arms, under which the defence must have access to and be able to present all the relevant information?

The central desire is to protect the work of the security services and the techniques that they use. Proponents of the use of intercept evidence often counter that by saying that criminals are already aware of the intelligence services’ ability to intercept calls. However, the Privy Council rejected that point and said that criminals’ knowledge is currently conjecture based on rumour and that, while a few of their presumptions may be right, the evidence is that most of them are wrong.

Partnership is important. Earlier, I set out some of the successes of the current regime. Those are based on partnership between law enforcement agencies and the security services, between the UK and our international allies, and between state agencies and communication service providers. There is concern that any attempt to allow intercept evidence in court would jeopardise those successful partnerships. Indeed, some communication service providers have indicated that it would make them much less willing to co-operate. I hope that the Minister will respond to those points.

Much has been said about other jurisdictions. I would appreciate it if the Minister again set out clearly the unique position of the United Kingdom’s legal system, which is very different from that of some of the other countries that have been cited, such as France and Spain.

In conclusion, we all want to have intercept evidence in court. We want answers for the families of those who have died in controversial circumstances, where an inquest cannot take place. However, we have to acknowledge that this is a complex process and that at stake is a system that has delivered a lot towards the protection of our national security and in tackling international crime. It is not clear that any other country uses intercept-gained evidence as effectively as the United Kingdom.

The Opposition will of course work with the Government to get intercept evidence into courts without compromising national security, and international examples, particularly from Canada and the US, give us some indication of how that might be achieved. I hope the Minister will be able to update the House on the progress that the Government have made towards that end, and particularly

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on what plans he has to allow inquests such as Mark Duggan’s to take place; what processes are currently under way to evaluate the practicalities involved in allowing intercept evidence; what processes are in place for the Government to take expert advice from lawyers, law enforcement agencies and the intelligence services to that end; and whether he has any plans to bring forward a Green Paper.

4.45 pm

The Parliamentary Under-Secretary of State for the Home Department (James Brokenshire): I congratulate the right hon. Member for Tottenham (Mr Lammy), as other Members have done, on securing the debate. As it is a Back-Bench debate, I am conscious of the need to allow him some time to respond at the end, so I will try to keep my comments to the point and respond as succinctly as I am able to a number of points that have been raised.

I congratulate the right hon. Gentleman also on the manner and tone that he has brought to this afternoon’s discourse. I certainly recognise his desire to represent his constituents and obtain answers on behalf of his community. I know from discussions that we had around the time of the riots that he has stood up for his community in doing so, and that has been reflected in the manner in which the debate has been conducted.

I hope the right hon. Gentleman understands that because of ongoing legal and other issues, I cannot really comment on the specifics of individual cases. I am aware that the pre-inquest hearing in the case that he mentioned is due to be held next Tuesday, and there is an ongoing IPCC investigation. I certainly recognise the sensitivity of the issues that he has brought before the House this afternoon.

I pay tribute also to my right hon. Friend the Member for Haltemprice and Howden (Mr Davis), whom I had the privilege to work alongside in opposition. I know how keenly he feels about these issues and the amount of work that he continues to put into answering the challenging question of how we can use intercept evidence.

We had an important contribution by my hon. Friend the Member for Esher and Walton (Mr Raab). I certainly do not see the justice system as an impediment to fighting crime, and justice and security need to go hand in hand. I do not see them as somehow mutually inconsistent. The right hon. Member for Torfaen (Paul Murphy), with his experience as a former Secretary of State for Northern Ireland and in his role with the Intelligence and Security Committee, highlighted some of the genuine challenges that exist, which I shall discuss. We also heard contributions from the hon. Member for Poplar and Limehouse (Jim Fitzpatrick) and my hon. and learned Friend the Member for Sleaford and North Hykeham (Stephen Phillips), and a balanced and helpful contribution from the Opposition Front Bencher, the hon. Member for Kingston upon Hull North (Diana Johnson).

I underline that the Government are committed to maximising the amount of sensitive material, including intercept evidence, that can be handled in legal proceedings. That is why we set out in the coalition agreement our intention to

“seek to find a practical way to allow the use of intercept evidence in court.”

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We have also proposed measures in the Justice and Security Bill to permit intercepted material to be adduced in closed material procedures and certain civil proceedings. In doing that, we remain acutely aware that lawful interception already plays a critical role in tackling serious crime and protecting the British public. It is used in almost all the highest priority counter-terrorist operations and many other serious crime investigations. It is no exaggeration to say that interception constitutes one of the most important and effective capabilities in tackling serious crime and threats to our national security, so it is crucial that we get it right.

We have heard about the Privy Council review and the differing legal and operational circumstances that apply in that regard and it is worth highlighting the considerable burdens on some of the intercepting agencies. Inter-agency co-operation, such as the sharing of sensitive techniques, is less well developed in other countries than it is in the UK, but the comparable examples in other jurisdictions suggest that fewer investigations could be supported and the value of intercept evidence as an intelligence tool might be reduced. It is right, however, that we should continue to examine the examples highlighted in a number of speeches and find our way through this important question.

I should make it clear that when there is relevant and sensitive material, the Government wish to find a mechanism that will enable it to be used in evidence. Finding a means of using intercept as evidence is challenging, however. There can be no clearer demonstration of that than the seven previous attempts that have been made to find a way forward. Any proposal to remove the prohibition on intercept evidence for inquests, for example, runs into a number of difficulties, and we and previous Governments have grappled with them as they relate to the general question of intercept evidence.

One option proposed by the right hon. Member for Tottenham is the disclosure of intercept product to a jury and properly interested persons, such as a family member. This Government considered that, as did our predecessor, and we do not believe that there is a practical way of preserving national security and the basic tenets of the make-up of juries. Crucially, intercept products shared with either a jury or properly interested party takes us back to the more general challenges presented by intercept as evidence, including preventing sensitive capabilities, techniques and approaches from becoming widely known. As things stand, we do not see that there is a viable way forward on that specific point.

The right hon. Gentleman also asked whether it would be possible for a coroner with the status of a judge to view sensitive material, including intercept evidence. We already have a mechanism through which a coroner may request the appointment of a serving judge as an assistant deputy. That enables the judge coroner to order the disclosure of intercept evidence to him or herself alone when a case’s exceptional circumstances make that disclosure essential in the interests of justice.

The judge coroner would have access to all sensitive material and could consequently be satisfied that the material provided in open court was all that was necessary to hold a proper thorough investigation. That independent assessment would give assurance to the jury and comfort to the family that all the relevant material had been placed before them. Of course, in a small number of cases that sensitive material would be centrally relevant

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and the article 2 investigative obligation would be engaged. In those circumstances, a statutory inquiry would be needed so that the inquiry panel, as the finders of facts, could see all relevant material. The independent examination of the material, however, together with the appointment of counsel to the inquiry, should ensure that proper account is taken of all the available material and that the interests of the family are properly protected, even if the material cannot be shared publicly.

Paul Goggins (Wythenshawe and Sale East) (Lab): I apologise that I was not in the Chamber to hear some of the earlier speeches. I have listened carefully to the Minister. Given what he has just said, will the Government think again about their decision not to provide for a closed material procedure for inquests—something they are prepared to provide in a small number of civil cases?

James Brokenshire: As the right hon. Gentleman knows, that matter was considered during discussions on the Justice and Security Bill currently in the other place, but the Government have determined that at this time it is not appropriate to bring those procedures forward. I hope, however, that the right hon. Gentleman heard me say that there is an existing mechanism to assess sensitive material, either through the appointment of a judge coroner to assess the relevancy and centrality of the evidence, or through the inquiry process I have highlighted.

The intercept as evidence review is obviously key to this discussion. It is an extensive and detailed review to assess the benefits, costs, and risks of introducing intercept as evidence in criminal proceedings, compared with the present intelligence-only approach under the Regulation of Investigatory Powers Act 2000. It has a broader remit than previous reviews, thereby avoiding wasted effort on approaches that prove to be non-viable, or being artificially constrained by existing intercept practice. Instead, it will ensure a fair and comprehensive assessment of the pros and cons of intercept as evidence.

The issues are complex and difficult, and as we have heard, there have been seven previous attempts since 1993 to find a way forward. The work is being overseen by the independent cross-party Privy Council group, chaired by Sir John Chilcot, which was reappointed by the Government. As the review is still ongoing, I am not in a position to provide the House with an update on its likely findings, but we will consider issues raised in this debate carefully and return to the House on the matter in due course. We do not want some form of open-ended

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process, and we recognise the desire to find solutions and a way forward. This is a current review, and work is ongoing to consider whether there is a way to proceed in the face of the challenges we have heard about.

The current intercept as evidence review seeks to build on the findings of previous reviews and the potential impact of a need for terrorist prevention and investigation measures. One clear conclusion of that previous work is that intercept evidence is not a silver bullet that will negate the need for alternative ways to manage risk. We have heard some examples of that this afternoon, and I highlight recent evidence from David Anderson, the independent reviewer of terrorism legislation, who reiterated that intercept as evidence would not be

“a silver bullet that makes terrorism prevention and investigation measures unnecessary”.

A number of issues have been highlighted this afternoon, but I fear that time will not allow me to go through them all in the detail I would have wished. Many overseas countries, both EU and Commonwealth, operate effective intercept as evidence regimes within their legal context. Their experience indicates, however, that the burdens on the intercepting agencies are considerable. The issues of disclosure and how to secure a fair trial are obviously central, and that has been highlighted this afternoon in relation to article 6 provisions. Disclosure, and the practical impact of that on agencies and their overall capabilities, is relevant and something that is being examined closely in the cost-benefit, overarching analysis on capabilities.

I will conclude by reassuring you, Mr Deputy Speaker, that the Government are committed to finding ways for intercept evidence of sensitive material to be heard in legal proceedings. I am grateful to the House and all right hon. and hon. Members for helping to inform the debate this afternoon, and for assisting in this important work.

4.59 pm

Mr Lammy: I am grateful for the support I have received from across the House. I do not think that an inquiry is the way forward in a case of this magnitude and given the nature of an inquest. However, I have heard the Minister’s remarks about the inquest powers of a judge alongside a coroner, and I will look into that.

Question put and agreed to.

Resolved,

That this House notes with concern that the inquest into the death of Mark Duggan may never commence under the current arrangements for the use of intercept evidence in courts and inquests; and calls on the Government to review its approach to open justice, in particular the use of intercept evidence in courts and inquests.


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Pseudoxanthoma Elasticum

Motion made, and Question proposed, That this House do now adjourn.—(Mr Dunne.)

5 pm

Nick de Bois (Enfield North) (Con): I am grateful for this opportunity to debate pseudoxanthoma elasticum, which is a hereditary disorder that can lead to the normal elastic fibres of the skin, eyes and cardiovascular system gradually becoming calcified, causing characteristic symptoms. I welcome the Minister to the Dispatch Box with his new responsibilities, and am grateful that my hon. Friend the Member for Burton (Andrew Griffiths), who also has an interest in this matter, has joined me in this important debate.

It is estimated that about one in 25,000 people in the world have PXE. That could mean that up to 2,500 people in the UK have the condition. Clearly, it is a rare condition, but it is potentially devastating, because approximately 60% of PXE sufferers will develop eye problems, and many experience the loss of central vision. Therefore, 1,300 people may go blind—it generally happens from their 40s onwards, but we know that it can happen to people as young as 9 years old, because any injury to the head can lead to the onset of a bleed in the eye, resulting in the sudden loss of central vision.

I should take this opportunity to thank Elspeth Lax who runs the PXE support group which has championed many individual cases in the UK, where there is a frustrating lack of knowledge among the wider medical community, including among cardiologists, ophthalmologists and general practitioners. The level of knowledge is hit and miss.

Although there is a knowledge vacuum, it is far smaller than it was 30 years ago, when Mrs Lax was told, on diagnosis, that she would go blind, and that she should give up work and not have any children. To date, her support group has looked after 567 patients in the UK, the youngest of whom was born with skin markings in six places. That is rare, but, as I said, my concern is that PXE patients can go on to lose their central vision at any time.

I am also grateful to PXE International. Its Facebook page has allowed me to engage with UK citizens and others from around the world, and to contrast UK health care management with that of other countries. PXE sufferers affectionately call themselves “PiXiEs”—the community name is used among sufferers, indicating their good humour and stoicism as they explore and expand their knowledge. It might interest the House to know that, such is the following created since the announcement of the debate, we are being watched in America over the internet.

The debate was prompted by the case this summer of Dawn Thomas, the wife of Lance Corporal Thomas, a constituent of my hon. Friend the Member for Burton, who will speak later in the debate. She was initially denied funding for anti-vascular endothelial growth factor medications, which are otherwise and forthwith called anti-VEGFs, which slow sight loss by stopping blood vessels that inhibit sight forming or growing. The primary care trust eventually conceded on funding the treatment, but my hon. Friend will deal with that later.

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My interest was spurred because, as the Minister well knows, I have a continuing and long-standing interest in matters health, as evidenced by my support for health reform, and I am currently co-chair of the all-party parliamentary group on primary care and public health. I should also remind the House that my wife was diagnosed with the condition at age 7, although she is fortunately not seeking treatment for sight deterioration. I appreciate the opportunity to put that on the record.

I intend to focus entirely on the deteriorating loss of central vision, not the complications arising from calcification, which include loss of skin elasticity and gastro bleeds. To do that, I shall highlight to the Minister four key points. First, notwithstanding what I have said, all PXE patients lead a normal, active and long life, if their sight is not compromised. No shortening of lifespan is attributed to PXE. Secondly, the treatment for the sight deterioration, which is similar but not identical to wet macular degeneration, can be treated by Avastin and Lucentis, as the drugs are known in this country. This treatment significantly enhances patients’ quality of life by preserving their sight, but, as he knows, Avastin is sometimes used “off licence” by primary care trusts—though I do not wish to go into that matter now. Treatment involves periodic injections into the eye and requires regular check-ups to detect any deterioration. It is not possible to predict the number of treatments a patient will need, but, according to the National Institute for Health and Clinical Excellence, the recommended cost of Lucentis is just short of £800 per treatment.

Thirdly, I and PXE patients believe that there is both a humane and an economic case for ensuring that Avastin and Lucentis are available on the NHS for PXE patients and—crucially—on a timely and pre-authorised basis. That would avoid greater cost to the state, if a person loses their sight. Fourthly, time is critical in getting treatment to prevent sight deterioration. Overall, my point is that, unfortunately, both the NHS process and the lack of information and awareness within the medical community put sight-saving treatment at risk. The condition is not widely understood. As a result, urgent treatment is often not delivered in a timely manner.

The Government have a crucial role in overcoming that problem by ensuring that all PXE patients are looked after, and given tests and treatment promptly. The benefit would be not only sight-saving treatment for patients but a longer-term economic saving to the NHS and wider economic value, because patients could continue to work and enjoy a full life. Currently, the patient pathway works against this goal. It might take a week or longer to see a general practitioner, then a letter has to be sent to a consultant, after which it might take between four and eight weeks to get an appointment. That might mean the loss of critical time.

After that, more time might be lost, if the PCT does not agree to fund Lucentis. Why? Even though it is used for eye injections to treat WMD, NICE has not approved Lucentis for PXE—it was not even considered as part of the appraisal. We therefore have this bizarre situation: there could be two people at the same hospital and requiring the same treatment, one with WMD and the other with PXE. The first could get the drugs without any special application to the PCT, while the patient with PXE, which is one of the rarest diseases I have come across, could not, simply because it was not

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licensed at the time. Soon, following the changes to commissioning, clinical commissioning groups will be making these decisions locally—a dangerously slow process—which is absurd, given that the drug has been authorised for age-related WMD.

Although many of the victims of this condition are in danger of losing their sight, most likely over the age of 40, in reality a blow to the head can cause a bleed, leading to loss of vision, quite possibly within days. Fast treatment is essential, and, because a blow to the head is often not the result of an emergency incident, gaining treatment at an early stage is unlikely. Sometimes it is only with the help of active support groups that people avoid losing their sight.

There is an important distinction between age-related wet macular degeneration and PXE, because although PXE can also strike at a young age, it is a genetic condition, not a degenerative condition. That is why it has been identified as a rare condition that we can treat. Patients therefore can and should be able to continue to lead long and productive lives, because not only is it the duty of the publicly funded NHS to provide such treatment, but it makes economic sense. The Royal National Institute of Blind People, for example, estimates that the annual cost to the public purse of supporting a person with loss of vision is somewhere in the region of £14,500. According to a 2009 report commissioned by the RNIB via Access Economics, that excludes the cost of informal care, which is often provided by family members and friends, as one would anticipate.

My message and my request for the Minister in this debate is this. Support for the case for anti-VEGFs being additionally licensed for PXE is crucial, and I do not believe it will be expensive. That is something that, I hope with the support of the Government, we may be able to pursue, so that we can avoid any frankly critical time being lost should a PCT or future CCG not understand or wish to authorise that. It is equally crucial that there should be support for greater awareness of PXE in the NHS among clinicians, as well as CCGs and their support groups, so that they understand the need for urgent treatment. It is perfectly understandable why a disease that, at best, will affect 2,500 people is not widely understood or at the top of the agenda. However, given the narrative that the House has just heard, I hope that what are proven drugs—which can so easily mitigate the potentially life-changing outcomes of this rare disease—can be made available on an on-demand basis.

5.11 pm

Andrew Griffiths (Burton) (Con): May I begin by thanking you, Mr Deputy Speaker, and Mr Speaker for allowing me to make a brief contribution to this Adjournment debate? I congratulate my hon. Friend the Member for Enfield North (Nick de Bois) on the work that he has done on this important issue. He talked about the support group, and I am delighted to say that he has been a great friend of the PiXiEs. His continued support in raising the issue has gone a long way to reassure sufferers that somebody is taking notice and that somebody cares about the terrible situation in which they find themselves.

As my hon. Friend said, I come to this debate because of a constituency case. Mrs Dawn Thomas came to my constituency surgery a few months ago. Hon. and right

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hon. Members will know that MPs’ surgeries are quite often the destination of last resort. People come to us in desperation when they have tried every other avenue and taken every other opportunity. They have asked everybody else they can think of for help; they then come to their MP and expect us to deliver what others have not been able to deliver. Often we are put in a difficult position, but I can honestly tell the House that when I was confronted by Mrs Thomas and her husband my heart went out to them. Theirs was a desperate situation, and one that in the 21st century we surely cannot allow to continue.

Let me put the matter in context. Mrs Thomas is a young woman—she is 44 years old—and she is a mother. She plays an active role in her community. She works as a secretary in a local haulage company. She enjoys playing darts. She has never claimed benefits; she pays her taxes. She has done everything right in playing her part in the big society, yet she was diagnosed with PXE at the age of 21—I congratulate my hon. Friend on his dexterity in using the technical terminology in his speech, but I will take the easy option and refer to it as PXE. In the meantime, Mrs Thomas lost the sight of her left eye as a result of another illness. She had no real symptoms of PXE until about two months ago, when her sight began to deteriorate rapidly. In desperation, she went to her GP, who referred her to a consultant. The consultant gave her the devastating news that she had PXE and that she would go blind.

There was hope, however, in that there was a treatment out there that could save Mrs Thomas’s sight and allow her to lead her life as she knew it. She applied for the treatment but was refused by the primary care trust. She appealed, and received a devastating, formal, bureaucratic letter that told her in no uncertain terms that she would go blind. To receive such a letter must be a dreadful experience for a wife and mum. That is why she came to see me.

The story was taken up by my local newspaper, the Burton Mail, which campaigned on Mrs Thomas’s behalf, and by the national press. I am grateful to South Staffordshire PCT for looking again at her case. At the first appeal, however, it said that her case was not exceptional enough. I would say that anyone’s sight was exceptional, and that we should do all that we can to save it. I am delighted to say that the PCT reviewed her case, and that she is now receiving the treatment that she deserves.

The PCT has confirmed to me that the cost of treating Mrs Thomas with Lucentis is £18,000, while the cost of Avastin is just £8,000. Let us compare either of those sums to the cost to the taxpayer if she were to go blind. She would be unable to work, and she would be forced to claim benefits. Surely it makes economic sense for the Government to give her the treatment that she needs at an early stage, so that she can keep her sight and continue to lead the life that she loves. I am sure that the House will understand that no MP wants to be in the situation that I found myself in when I had to tell Mrs Thomas that the NHS could not help her, and that she was facing blindness.

5.17 pm

The Minister of State, Department of Health (Norman Lamb): I congratulate my hon. Friend the Member for Enfield North (Nick de Bois) on securing the debate.

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He told the House that his wife had been diagnosed with PXE, and I am sure that this is a matter of great personal concern to him. I am grateful to him for engaging with me and the Department before the debate. I am keen to ensure that we maintain a continuing discussion on this matter. We cannot answer all the questions in the debate today, and we cannot change the whole system or the way in which the NHS operates, but let us discuss the genuine problem that has been highlighted today.

I should also like to acknowledge the contribution from my hon. Friend the Member for Burton (Andrew Griffiths), who spoke movingly about his constituent’s situation. He drew our attention to the fact that, while losing one’s sight is a critical matter for an individual, the cost to society and to the Government demonstrates powerfully the case for treatment in those circumstances. I also want to pay tribute to Elspeth Lax for her tireless work. We owe people like her, and the support groups that offer support to hundreds of patients with many different conditions, an enormous debt of gratitude.

I completely take on board the importance of fast access to treatment. It is critical. Indeed, the NHS constitution makes the point that citizens have a right to a speedy decision, without delay. People need to exercise their rights under the constitution in cases such as these.

Nick de Bois: It is worth highlighting that, because of the shortcomings, many people suffering from this condition have resorted to paying for their drugs themselves privately, such is the urgency of their situation.

Norman Lamb: I completely understand that. The debate has focused on the effects of the condition on the eye, and these matters are of considerable concern to people with PXE.

There are no licensed eye treatments for PXE. People with PXE should be advised on healthy lifestyle measures, such as stopping smoking, adopting a healthy diet and taking physical exercise, to reduce the risk of complications. They should also be monitored regularly by a health care professional. As it is a genetic condition, patients who are considering having children should receive genetic counselling, and first-degree relatives should be screened. Because of the similarities between age-related macular degeneration and PXE in the eye, some clinicians may consider using treatments that are effective in AMD, including laser treatment and the drugs Avastin and Lucentis, which have already been mentioned. My understanding, however, is that PXE has a different cause and a different process, and patients with PXE might not respond to those treatments in exactly the same way.

Lucentis is considered by some clinicians to be effective in treating people whose eyes have been affected by PXE. I have also mentioned Avastin, but neither Lucentis nor Avastin are licensed by their manufacturer for use in the treatment of patients with PXE. The National Institute for Health and Clinical Excellence has appraised or is currently appraising the use of Lucentis in the treatment of other eye conditions such as wet age-related macular degeneration and other conditions—diabetic macular oedema and retinal vein occlusion, for example—but Lucentis is currently recommended in NICE technology appraisal guidance only as a treatment for wet AMD, subject to certain criteria.

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Clinicians may prescribe any treatment, including an unlicensed treatment or a product not licensed for a particular condition, where they consider it to be the best available medicine to meet the clinical needs of their patients—it is for the judgment of the clinician—subject to their primary care organisation agreeing to fund the treatment. Primary care organisations, too, are legally obliged to provide funding so that treatments that have been positively appraised by NICE are available on the NHS. In the absence of relevant NICE guidance, these primary care organisations are responsible for making funding decisions based on an assessment of available evidence and on the basis of an individual patient’s circumstances.

Where a decision is taken not to fund a treatment, primary care organisations must have a process to allow for the possibility that an individual may have exceptional circumstances—I absolutely take the point that loss of sight needs to be taken very seriously into consideration—which justify access to treatment that is not available to the rest of the population. If doctors feel that there are exceptional clinical circumstances, they can request treatments that are not usually funded on behalf of their patients through an individual funding request. I recognise, as I have said, that time can be of the essence in these cases. In this situation, a special panel that includes clinicians would carefully consider individual cases against the latest medical evidence and decide whether the treatment could be approved.

Under the NHS constitution, patients have the right to expect local decisions about the funding of medicines and treatments to be made rationally and without delay following a proper consideration of the evidence. If new evidence arises to support the use of a treatment or if an individual’s clinical circumstances change, a new individual funding request can be made. To help organisations make these difficult decisions, the Department has issued a set of core principles, and primary care organisations are required to have in place clear and transparent arrangements for local decision making on funding of drugs and for considering exceptional funding requests.

I shall deal now with the general issue of the commissioning of services for people with rare conditions. This Government are committed to providing the best quality of care for people with rare conditions. When we took office in 2010, we endorsed the right in the NHS constitution that says no one should be left behind just because of the rarity of their condition. Lack of awareness is, of course, often a real problem. The importance we attach to services for people with rare conditions has been clearly demonstrated in the reforms set out in the Health and Social Care Act 2012, which my hon. Friend the Member for Enfield North was active in supporting during its passage through Parliament. As a result, specialised and highly specialised services, which are currently commissioned at both a national and regional level through a range of NHS organisations, will be brought together under one roof. From April 2013, the new NHS Commissioning Board will directly commission services for people with rare diseases on a national basis. The board will have a clear focus on specialised services organised around programmes of care. These new arrangements for the commissioning of specialised services provide a unique opportunity to do

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things more effectively and smarter than in the past, and will bring real benefits to patients with rare conditions, including to patients with PXE.

Moving to a national standard system of commissioning while maintaining a local focus managed through the board’s four regions and the local area teams will provide the geographic and speciality oversight that is needed for these services. The commissioning board will set out a detailed service specification for each of the services that it will commission directly. That will link national service knowledge and expertise with local contract knowledge of providers and pathways of care, cementing the new system together in the interests of patients. The benefits to patients with rare conditions are clear: a single national commissioning policy and better planning and co-ordination will result in improved consistency around the country.

The Government are also committed to increasing awareness—which I mentioned earlier—of very rare conditions such as PXE. That commitment has been demonstrated through the UK’s involvement in the development of the UK plan for rare diseases. We shared our views on the proposed plan earlier this year, launching our consultation on 29 February, rare disease day. The consultation document was produced jointly by the four nations of the United Kingdom, and the consultation closed on 25 May.

The consultation responses will inform the UK plan, which is being developed in response to the 2009 European Council recommendation on rare diseases. That recommendation, which was supported by the UK, asked every member state to develop a national plan or strategy for rare diseases by the end of 2013. My officials are currently working through all the consultation responses—there were more than 350, which demonstrates the level of interest—and are writing a summary of the responses. They expect to publish it later in the autumn, with the final plan being published next year.

This is the first time that the UK has developed a plan to tackle rare diseases. The plan will bring together a number of recommendations designed to improve the co-ordination of care and to lead to better outcomes for everyone with a rare disease, including people with PXE. However, a plan in isolation is clearly not enough. This plan will need buy-in from everyone in the system. With that in mind, my officials have been working closely with the newly formed NHS Commissioning

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Board to ensure that the plan has traction within the system, so that people know about it and understand its power.

In comparison with some other member states, the UK already has good systems for supporting and treating people with rare diseases through the provision of specialised services, but that does not mean that we cannot do better. For example, more co-ordinated care saves patients time, money and stress by avoiding the need for multiple visits to various clinics and hospitals, which has too often been people’s experience in the past. We are also considering how rare diseases can be better represented in training curricula. That is critical to raising the level of knowledge and capacity in the system.

People with rare diseases are likely to come into contact with professionals from a range of disciplines: from GPs through geneticists and researchers to nurses, surgeons, mental health teams and social care workers. It is for that reason that the UK plan for rare diseases will be targeted at the whole of the health and social care sectors. The final plan will set out a coherent and joined-up approach to tackling rare diseases. It will acknowledge existing developments, such as the contribution that expert centres can make to better diagnosis and treatment of rare diseases, while proposing a number of further developments, such as better information for patients so that they can be fully engaged and helped to understand and manage their conditions.

The plan will include recommendations, actions and examples of best practice for commissioners of specialised services, royal colleges, providers of information, and staff on the ground who deliver care to people with rare diseases. It will recognise that each nation of the UK has different health care systems, and it will be for each nation to implement it in accordance with its own priorities and patterns of service. In England, much of the implementation of the final plan will be for the new commissioning board in its role as a single national commissioner of specialised and highly specialised services.

I am grateful to my hon. Friends for raising this important issue. The value of a debate such as this is that it forces Ministers to focus on rare diseases to which we might not have devoted time otherwise. I shall be happy to continue to engage with the issue to ensure that patients with PXE are given the treatment and care that they deserve.

Question put and agreed to.

5.30 pm

House adjourned.