Organ Donation: Opt-out System

Jim Shannon Excerpts

Thursday 13th July 2017 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate. I congratulate the hon. Member for Barnsley Central (Dan Jarvis) on presenting what I thought was a passionate, honest and fair contribution. This is a matter I am also interested in and seriously believe in. I will say early on that I subscribe to the opinion put forward by the hon. Gentleman, because I feel that is the way things should be. That is a personal opinion. All of us here obviously agree that organ donation is important, but we might look at it in different ways.

I am not interested in this only because of my role as the DUP’s health spokesperson; I also have a personal interest relating to family members. The hon. Gentleman gave the example of one of his constituents. My nephew Peter was born with a kidney the size of a peanut, which is probably fairly hard for people to comprehend. From the day he was born to the day he had the transplant, he was on dialysis treatment, which, once someone has started, they cannot come off. I am very aware of the issue, and I will make an honest, personal contribution to the debate.

Someone in this world donated that kidney to Peter, who is alive today because of it. The alternatives were looked at by the family, and everyone looked at it in the way that they thought best. His mother was going to give her kidney, but then she became pregnant, so that opportunity fell away. In the meantime, someone else came forward with a kidney donation, which Peter had. Peter is the same age as my second boy, so I can quite honestly relate to the difference between the two boys as they grew up. I understand the importance of organ donation, and believe that people certainly should be on the register.

I was on the Organ Donation Northern Ireland website just before we came here, and the first sentence I read really impacted upon me:

“Most people would accept an organ if they needed one.”

That is not really surprising, is it? Yet only 40% of us in Northern Ireland have signed the NHS organ donor register. We would all want an organ donation if we needed it, but we have not all signed up. I have to ask the question honestly, sincerely and fairly to those here: if that is the issue, would they not donate their organ? I know that I would.

I carry a wee organ donation card, although it does not make any difference. It is long faded because it has been in my wallet—they say that the money in that wallet is like a prisoner, but that is by the by. I signed up for the card when I was 18, although that is no longer necessary, because when people sign up for their driving licence and tick that box, they are registered forever. That is how we do it in Northern Ireland. The card is very faded, but it says:

“I would like to help someone to live after my death”.

That is its purpose.

I was returned for Strangford with 42% of the vote in 2015, and this year—I thank the people of Strangford for this—I was returned with 62%. I have to tell hon. Members that it is a much better position to be in this time around than in 2015. It is a lot more safe and secure, but how much more so for those who need donations as a matter of life or death? Last year, 12 people died in Northern Ireland while waiting for an organ transplant. That may not seem a huge number, but speak to those 12 families and hear exactly what it means to them. Every one of us in the Chamber— those in the Gallery and hon. Members who are contributing—will know exactly what it means. It is a phenomenal loss.

The sad fact is that some people who passed away in that same year may well have wanted their lives to make a difference by donating their organs, but because their families did not know, it did not happen. It is about raising awareness, having the debate today and every one of us searching our souls and consciences for how to respond. It is really important that we do so; it is a conscious decision that everyone should consider. I completely believe that this is a matter of conscience. In fairness, the hon. Member for Barnsley Central said that in his contribution. He recognises that it is a matter of conscience, and I heard that in what others said as well.

I will look down on no one who feels that, due to a religious belief or some other belief, they cannot donate their organs. That is freedom of belief in action and the conscience clause is important, but what I cannot understand is someone who simply refuses to consider or discuss the possibility. I agree with the Welsh example: I believe that people should be on the list unless they opt out. We have to up the ante and move forward constructively.

I mentioned the case of my nephew. There is another case that I always remember. There was a gentleman in Newtownards whose son was injured in a car accident. Unfortunately, he was on life support and was going to die. His dad told me that his son, by his death and donation, was able to save six lives. In Newtownards we also have a very active group of people who are donation recipients. The council at that time—it was called Ards Council then; it is now Ards and North Down Borough Council—had made a remembrance garden, which we had an opening ceremony for. Many people in not only my constituency but across the whole of the United Kingdom of Great Britain and Northern Ireland understand exactly what this means.

The last time I spoke about organ donation in this Chamber, I said that 30% of people in the UK were registered to donate. That figure is now 36%. That is great, but it is still not enough. That is why we have to do something and look seriously and honestly at what is being proposed today. Registered donor numbers have increased every year since 2012 and are 20% higher than five years ago, yet three people a day are still dying needing a transplant. Is that right? No, it is not. We have to do something about that. The figure could be lower if people were prepared to think or talk to loved ones about it.

I see so many driving licence forms in my office. It is not for me to judge, and I will not—I never judge anybody on donation—but on too many of those driving licence forms people have not ticked the box to say that they want to be a donor. I do not know why they have not done it. It is up to them to make their own mind up, but when our time comes to pass on from this side of the world, we can help someone. If I can help someone with this old, fragile, diabetes 2 body standing here, why should I not? It is time that people understood the importance of this decision.

I am conscious that other Members want to speak, so I will not ramble on too much longer, but I want to make a wee comment about Wales. We are all aware that in Wales, where they have had so-called deemed consent since December 2015, only 6% of the population has chosen to opt out, which speaks volumes. More importantly, in that one year in Wales, as the hon. Member for Newport West (Paul Flynn) said, 39 organs were transplanted through deemed consent out of a total of 160 transplants. That 39 out of 160 was a significant contribution to saving lives. Why should we not do that? I cannot get my head around it at all.

I will finish with this, because you are giving me the eye, Ms Buck, so I need to be careful. I urge people to be aware of the decision and the impact that it can have on families. We must take more positive steps to see a better take-up of organ donation, while always ensuring that people can make the choice themselves. I am conscious of the conscience clause. The simple fact is this: we can save lives in our deaths. Let us encourage people to do this in a manner that is sensitive and yet makes clear the case that we would nearly all take an organ if we needed one—would we not?—and should therefore all be willing to give one.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Jackie Doyle-Price)]

It is a pleasure to serve under your chairmanship, Ms Buck. I thank all Members who have participated in this debate. Organ donation has been such an established practice in the NHS for quite some years that we often forget about it. The way that everyone has brought the subject to life today, with references to their own stories and experiences, has reminded all of us how important it is. Perhaps it is time this subject had some renewed focus, if only to raise awareness and encourage people to opt in, whether or not we ultimately introduce an opt-out system.

I pay tribute to the hon. Member for Barnsley Central (Dan Jarvis). He could not have done a better service to his constituents Joe Dale and Max Johnson in the way he expressed his argument with considerable persuasion. Perhaps through him, I could send my good wishes to Joe Dale’s family. I hope they get some comfort from the fact that Joe lives on by giving life to others. As we know, one organ donor can save or transform up to nine lives. What better legacy can we have than for other people to live on? We, as Members of Parliament, could perhaps be more proactive in giving that message, as we breathe life into this much neglected subject.

I am told that we last considered organ donation on the Floor of the House in 2014. This opportunity to discuss it is very welcome, and we will have many more opportunities, given the confirmation from the hon. Member for Coventry North West (Mr Robinson) that he will use his private Member’s Bill to push this issue forward. I am sure it will get a good airing.

The hon. Member for Washington and Sunderland West (Mrs Hodgson) presented tests at the end of her speech for what we should bear in mind when deciding what to do in this space. I think we should do all those things, in any case, as we talk about kidney donation. The key has to be public awareness and ensuring that medical professionals do their bit to encourage people to participate in organ donation. We must also engage with community groups where there is a specific problem. That is my biggest priority.

I want to say a bit more about the context. Obviously, we want to encourage as many people as possible to make clear their intention to donate after death and to have that conversation with their families. That is often where the decision is made. Medical professionals need the requisite training to have these sensitive conversations.

As the hon. Member for Barnsley Central mentioned, not many people understand the system of organ donation. We can all sign up to be on the donor register, but not all of us will be in a position for our organs to be used. Quite often, organs can be used after an unexpected and traumatic death, and it is very difficult for any medical professional to have a conversation with the family about what should happen to the deceased’s organs. We need to have a lot more understanding and be a lot more willing to make it clear to our loved ones that we would want our organs to be donated if we were ever unfortunately in that position.

I must pay tribute to all those in the national health service who work in this area. Their determination and commitment makes donation and transplantation possible. Although we still need more transplants, we have seen a significant increase in donations in the UK. We saw 1,413 donors giving 3,712 transplants in the last year, which illustrates how many lives can be saved by one successful approach to donation.

It is incredible that, as NHS Blood and Transplant told us only this week, more than 50,000 people are now alive thanks to organ donation and transplantation. The first transplants took place in my lifetime, and they were seen as revolutionary. One reason we have not given this subject as much attention is that donations now tend to be seen as commonplace.

There is much to celebrate, but there is also much more to do, not least because 457 people died last year while on the active transplant waiting list. That ignores the 875 people who were removed from the list because they had become too ill to receive a transplant. Many of those will have died shortly afterwards. At any one time some 6,500 people are on the waiting list, and again, although waiting times are declining, we cannot be complacent. We need to make sure that those people have hope that, when they are on the list, they have a realistic chance of receiving a transplant.

Our biggest challenge is black, Asian and minority ethnic donors, for two reasons. First, black and Asian people are more at risk of illnesses that may require a transplant, such as high blood pressure and diabetes, and secondly, the consent rate for those communities is half that of the white population. The same is true for blood, so we need many more blood donors from the black community. There is a constant need for that because of the prevalence of sickle cell anaemia, but we know that only 1% of the nation’s blood donors are black. So we need to do much more not only in organ donation but in blood donation.

There is some encouraging news. Last year, more than 6.4% of all deceased donors were from black and Asian communities. That is a significant increase, so the direction of travel is positive, but we need to do much more. Average waiting times for kidney transplants have fallen for everyone, and that rise in donations from black and Asian communities has meant that the biggest fall in waiting times is for black and Asian patients—down from four years to two and a half over the past seven years. The direction of travel is good, but we need to do more, because people from black and Asian communities still wait at least six months longer than white patients. That problem needs to be tackled, because recipients are matched according to blood and tissue types, which differ across ethnic groups.

As we set out in our manifesto, we are determined to target that audience, and we welcome the involvement of all hon. Members in that. We are looking at other partner agencies, and we are working with the National Black, Asian and Minority Ethnic Transplant Alliance. However, many other groups need to be engaged, not least to tackle misplaced cultural concerns about donation. It is not incompatible with Christian beliefs to bequeath one’s organs, and we need to make sure that that message gets out loud and clear by engaging with all community leaders in this space.

We have heard some persuasive arguments on opt-outs and why we should move towards an opt-out system, and I certainly understand the thinking behind that proposal. To add my personal experience of this, my constituent Patricia Carroll regularly lobbies me on the subject. Her daughter Natalie suffered from anorexia and diabetes, and died awaiting a kidney and pancreas transplant. Patricia tried to donate her own kidney to Natalie but was not a match. Following Natalie’s death, she decided to become a live donor. Last year—I think it was around Christmas—she gave a kidney to a 22-year-old young man called Joe who had been on dialysis for three or four years.

What Patricia has done for that family—it is the family, not just the individual—has transformed their lives. I again pay tribute to all live donors. That is an incredibly altruistic thing to do when recognising the impact it can have on the donor’s own health. It is amazing, particularly when there are donors who have absolutely no personal relationship with the beneficiary of their organ. Patricia will be watching with interest to see what I have to say about this.

There are obvious attractions to opt-outs as a tool; anything that will increase the pool of available organs will obviously be attractive. However, opt-outs on their own are not a panacea, and the references to what we can learn from Spain are significant. The issue is about what is wrapped around that. Specifically, it is not just about public understanding and public awareness of why we need donation and what it means, but about how the medical profession deals with it.

The crucial point that affects donation is the conversation in the room between medical professionals and bereaved families. We have seen examples of families refusing consent because they are not convinced that their relatives wanted to donate and it feels safer to say no. Equally, we have seen that being overruled. We find that the highest rates of donation are achieved when we have specially trained nurses who have that conversation with the family in a sensitive way. When such conversations take place, rates of donation go up significantly. Those conversations are critical. If we look at the experience of Spain, we see that that injection of medical advice achieved the step change in donation rates, over and above having an opt-out system.

None the less, we are interested to see the experience in Wales. We are certainly prepared to consider that, and obviously we need to consider it sooner than we might have intended, given the private Member’s Bill, but opt-out will never be a silver bullet to achieve more donation. We are committed to ensuring that we do whatever we can to increase donation. Our strategy, “Taking Organ Transplantation to 2020”, contained the ambitious targets that the hon. Member for Barnsley Central mentioned. Although we have not actually achieved the 70% that we are aiming for, the direction of travel is positive. The fact that more than 23.5 million people have opted in to donate their organs is quite an achievement, although I am not complacent. To give credit where credit is due, the NHS and everybody involved have achieved a great deal in achieving those figures.

The key thing is the availability of specialist nurses. We must ensure that organ donation is embedded as a normal consideration of end-of-life care, where that is available. We have looked at developing a new organ donor register that makes it easier for people to opt in. We are trying to make available as many opportunities as possible for people to do that, for example when people sign up for a new driving licence. In any interaction with Government, we need to give people that option, because where it is a positive choice, it is more likely to be effective.

[Jim Shannon]

We all agree about the need to raise awareness on the mainland and across the whole United Kingdom of Great Britain and Northern Ireland. When it comes to raising awareness—I presume the Minister will do so imminently—will she engage with the Northern Ireland Assembly, provided that it is still going, and with Scotland and Wales to ensure that we have a UK-wide programme of awareness to get people on the register?

[Jackie Doyle-Price]

The hon. Gentleman makes an excellent point. He might have seen that I am wearing a pin, which is a nice pink heart that says, “Yes”. That campaign is being run by NHSBT to highlight the need for people to offer to be a donor. If people are prepared to do it, they should wear this nice pin. We need to use any number of the tools at our disposal, and we need to be a lot more imaginative about the ones we use. I look forward to seeing him with his nice pink heart.

I should conclude my remarks to allow the hon. Member for Barnsley Central an opportunity to respond to the debate. I think that we are all united in the outcome we are trying to achieve, which is to encourage more people to be willing to donate their organs to achieve more transplants. With regard to the tools we employ to achieve that, we will look at opt-out and consider whether that would do anything, but in the meantime we are prioritising engagement with black and minority ethnic communities. We will continue to invest in specialised nursing to have those very sensitive conversations, because they need to happen. We will look at what more we can do to encourage more families to be willing to give consent at the time it needs to be given. I thank everyone for contributing to the debate.

Adult Social Care Funding

Jim Shannon Excerpts

Thursday 6th July 2017 Commons Chamber

[Steve Brine]

Although I am not specifically the Minister with responsibility for care, I am the public health Minister and the primary care Minister. We have brought those two subjects together because we want to see a healthy population across the board. I am pleased that my hon. Friend has mentioned the Commission on Loneliness. It was probably set up before she entered this House; it was started by the late Member Jo Cox, who did some really good work that is rightly being taken forward in this Parliament.

[Jim Shannon (Strangford) (DUP)]

Carers in Northern Ireland who provide for elderly and disabled loved ones save the NHS some £4.6 billion, and that figure rises to £132 billion across the whole of the United Kingdom. How does the Minister intend to ease the pressure on them by funding more respite places, to allow families to have the much-needed breaks that enable them to carry on caring in the long term?

[Steve Brine]

I will look into that. The hon. Gentleman makes an important point. I am sure that Members across the House take part in carers week events every year. I certainly do that in my constituency. It is at those events that we meet not only the staff who work in the system but the people who, day in and day out, do not have the life that they would like to have because they have caring responsibilities. We also meet young carers who do incredible work. The hon. Gentleman is right, and we should all say a clear thank you to those people for the work that they do.

Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 4th July 2017 Commons Chamber

[Mr Dunne]

The hon. Gentleman is right to draw attention to the fact that we continue to have a surplus of applicants for nursing degree courses in this country. The level of that surplus has fallen somewhat as a result of the change in funding structures. We shall have to see where it ends up, because at present universities are not recruiting directly outside the UCAS system, but we are confident that there will be more applicants than places this year by a ratio of some 2:1.

[Jim Shannon (Strangford) (DUP)]

Does the Minister agree that there are opportunities for more mature students to gain access to courses easily, and that more work must be done with adult learning institutions to provide courses that allow such direct access?

[Mr Dunne]

The hon. Gentleman is right to point out that the more mature workforce, particularly people resuming careers later in life—perhaps, in the case of women, after they have had children—is an important source of experienced professionals, and we need to do more than we have been doing to try to encourage such people to return to the workforce.

NHS Shared Business Services

Jim Shannon Excerpts

Tuesday 27th June 2017 Commons Chamber

[Mr Hunt]

The original contracts with SBS went back to 2008, which is when it started providing mail redirection services, but they were renewed in 2011, which is why I think Members on both sides of the House need to reflect on this.

[Jim Shannon (Strangford) (DUP)]

Over 700,000 pieces of sensitive medical information went missing, and the situation was allowed to escalate over a five-year period without being discovered, which I think shows gross incompetence. What has been done to set right this wrong, especially for the families left behind who have been affected by this worrying incident?

[Mr Hunt]

There has been a huge operation to deal with this. As the hon. Gentleman will know, there were 709,000 pieces of correspondence. We did an initial clinical triage to identify which ones were low risk, such as notifications of change of address, and which ones were higher risk, such as test results. We identified 2,500 that had a high priority, and 84% of those have so far been identified as being of no clinical risk, but we are continuing to do more thorough clinical risk assessment.

Homeopathy and the NHS

Jim Shannon Excerpts

Wednesday 29th March 2017 Westminster Hall

[David Tredinnick]

The right hon. Gentleman, who has been in the House as long as I have, has made a good point. There is scientific evidence out there, although we could use more. One of the problems is that, when scientific evidence is produced, it is pooh-poohed. However, that does not stop people using, for example, arnica cream when they get wounds. It is a standard preparation and it is a homeopathic medicine. So there is a degree of need for more studies, but there are studies out there that are ignored.

I have said homeopathy is the second biggest medical system in the world. Some would say it is the most prestigious. It has always been held in very high regard by people who are widely respected. It is no secret that the royal family and many celebrities have used homeopathic medicine over the years. It has become increasingly important in an age when drug dependency is epidemic and when there are serious worries about the effectiveness of antibiotics.

The homeopathic private sector is growing fast not only in this country, Europe and America, but everywhere. However, in the NHS, we are under attack from people in the medical establishment. This goes back to 2005, when a letter was put out attacking homeopathic services in the health service. It was actually a bogus letter on NHS letterhead. The Countess of Mar and Lord Palmer asked a question about it and the reply acknowledged that

“this document was not issued with the knowledge or approval of the Department of Health and that the use of the National Health Service logo was inappropriate in this instance. The document does not represent any central policy on the commissioning of homoeopathy”.

Anti-homeopathy groups such as the so-called Good Thinking Society, which is a front for one individual, a sceptic called Simon Singh, are threatening clinical commissioning groups with legal action for commissioning homeopathy. People such as Simon Singh are anti-patient, anti-choice and closed-minded individuals who have never studied or used homeopathy. In the UK, we have a robust system of homeopathic regulation. We have the Faculty of Homeopathy, which was formed in the 1950s for doctors. Doctors are, of course, regulated by the General Medical Council as well. In 2015, the Professional Standards Authority took on oversight of the regulation of the 2,000 members of the Society of Homeopaths. Such enhanced regulation is important and is a good reason why homeopathy should be more greatly available in the health service.

[Jim Shannon (Strangford) (DUP)]

Will the hon. Gentleman give way?

[David Tredinnick]

I will give way to my hon. Friend from Northern Ireland.

[Jim Shannon]

It is always good to have debates on anything to do with health, but particularly with homeopathy. There have been several reviews of the scientific evidence on the effectiveness of homeopathy. Indeed, this House had a report in 2010, which the Minister will be aware of, from the Science and Technology Committee. In my constituency of Strangford is a major shop in Newtownards that deals in nothing else but homeopathy medicine, which clearly shows a demand. Does the hon. Gentleman feel it is perhaps now time for the Government to look at homeopathy in a new light because of the demand that there is, and also to see what homeopathy can offer?

[David Tredinnick]

My hon. Friend makes a powerful point. There is insanity about this subject. The amount of money spent on homeopathic prescriptions in the health service is about £110,000 per annum. So why are those who are against it so fanatically against it? What is it that gives them the swivel-eyed look? Why do they take so much trouble to rub out an alternative at a time when the mantra of the Government is patient choice? It is quite bemusing. Many of the patients that go to homeopaths have contraindications to pharmaceutical drugs, or chronic illnesses that have not been helped by conventional medicines. I say to the Minister that there are no cost savings to be made by banning homeopathic prescriptions, as patients will still need other interventions instead. The Government should assess how much money the health service has spent on other interventions for these patients before the successful use of homeopathic medicine.

If we look around the world, we see a much more developed landscape. In France, 70% of pregnant women use homeopathy. You can go to any chemist in France and find homeopathic preparations and chemists who are qualified to talk about them. If we go further afield, I particularly like the example of India where there is a Ministry for complementary medicine called the Ministry of AYUSH—the “H” in AYUSH stands for homeopathic medicine. I will say a little about that later.

We have already discussed evidence and there is always a need for good studies. There was a study in France, which I sent to the Secretary of State a long time ago for consideration by the chief medical officer. I have not had a reply yet, although I accosted him about it in the Division Lobby this week. A bullet-proof study named EPI3, which looks at the integration of homeopathy into general practice in France, showed positive outcomes, as does a randomised double-blind, double-dummy, multi-centre, non-inferiority clinical trial, which covers everything possible to follow the protocol, looking at the effect of an echinacea-based hot drink versus oseltamivir in influenza treatment. There are also promising indications that homeopathy could be helpful in combating the increasing problem of antimicrobial resistance. That is an example of a good study. I will come back to the EPI3 study.

The attacks on homoeopathy in the NHS come pretty much from one person. They come from an organisation called the Good Thinking Society, a charity that is not supposed to campaign for changes in the health service, but its website states that it wants to raise money because it

“Helps us campaign against the funding of homeopathy”.

According to the website, its leader, the Good Thinking Society’s chairman, largely funds the whole operation and another charity. It launched an attack on the Liverpool homeopathic service to shut it down, and eventually it was shut down. It worked like this. There was a consultation for local people at the end of 2015, at which I had a representative. Some 90% of those present were in favour of retaining or extending the service. Voting was by secret ballot, using hand-held remote controls, and 90% were in favour. One lady present, who suffered from a range of chronic conditions that conventional medicine had been unable to treat, was close to tears. She said that the only thing that had allowed her to live a relatively normal life was homeopathy. She pleaded with the clinical commissioning group not to cut the homeopathy service.

The next stage was a formal consultation open to everybody, with no restriction by area and no checking of who was contributing. That consultation found 73% against keeping the homeopathic service. It is my belief that that consultation was hijacked by the Good Thinking Society—that it got people to call in and distort the result. The right hon. Member for Oxford East (Mr Andrew Smith) and I have been here for a long time—nearly 30 years—and I think we can smell electoral fraud when we feel it. I cannot see how the results can go from 90% in favour to 73% against.

Patients who relied on that service have nowhere to go now, except for being a charge on the health service. That decision caused immense pain. One patient, Mr T, aged 58 from Liverpool, said in an interview from October 2015:

“After 3 years of trying everything my doctor gave me homeopathy, and within 4 months my stomach problems were better. 18 months later I can lead a normal life again.”

A London patient with arthritis said:

“It is the only thing that has helped me find remission from a disease that previously left me wheelchair-bound.”

The core of this debate is the most recent, and most serious, attack on NHS homeopathy—the attack on the Royal London Hospital for Integrated Medicine, the largest public sector provider of integrated medicine in Europe, formerly known as the Royal London Homeopathic Hospital. It offers an innovative patient-centred service, integrating the best of conventional and complementary treatments for a wide range of conditions. All clinics are led by consultants, doctors and other registered healthcare professionals, who received additional training in complementary medicine. This is a flagship hospital that is admired around the world. Instead of threatening it with closure, it should be hailed as an example of best practice and used to develop integrated medicine and to spread understanding of its benefits to the public and the health community.

For greater accuracy, I spoke to the director, Peter Fisher, and I have a briefing note from him. Apart from being a director of the hospital, he happens to be—as he described himself when he came before the Select Committee on Health in the last Parliament, during an inquiry into long-term care and conditions when I was acting Chair of the Committee—physician to Her Majesty the Queen. This is not somebody with a little training; he is a highly proficient, highly trained doctor—so much so that he is a doctor at that level.

Dr Fisher says:

“The Good Thinking Society is harassing the Royal London Hospital for Integrated Medicine by threatening legal action against its host clinical commissioning group, Camden. The RLHIM has an agreement with the north London cluster of clinical commissioning groups, led by Camden, for clinical care pathways for 13 conditions. Patients who do not have these conditions can be treated if normal treatments have failed or have caused serious adverse effects, and in certain other circumstances. The GTS is attempting to close the latter pathway. This would cripple the hospital, preventing it from providing homeopathy, herbal and other treatments and from treating cancer patients. The GTS has harassed the RLHIM and other complementary medicine providers with legal action, reporting to the ASA”—

the Advertising Standards Authority—

“and the Charity Commission.”

I will say more on that if we have time. He continues:

“The RLHIM is the largest public sector centre for integrated medicine in Europe with a strong record of provision, innovation and research. A large scale study in France comparing conventional and homeopathic GPs showed that homeopathic GPs prescribe far fewer drugs, with the same or better clinical results, at 20% less cost.”

So there is an economic argument here, which I will say a word about in a moment.

In the year ending March 2016, the Good Thinking Society had an income of about £100,000. It gave £25,000 to something called the Nightingale Collaboration, which is not a charity, so that it could use the money more freely. That organisation has attacked osteopaths, who are regulated by an Act of Parliament—I was on the Bill Committee for that—and homeopaths, and has waged a campaign against complementary therapies with the Advertising Standards Authority.

The individual, Simon Singh, is a strange and inconsistent individual. He sent me an email before Christmas explaining why he could not send me a Christmas card. I am not sure I would have expected one, as I absolutely despise him. In 2015, it was reported that the charity made claims that processed sugars are not deadly and do not feed cancer, but he did not reveal that the charity was receiving funds from a very large soft drinks manufacturer. I think it is accepted that large amounts of sugar are not necessarily a good diet for cancer patients. I think that is why he got his nickname, “Sugar Drinks Simon”.

Mr Singh also criticised the lyrics of the Katie Melua song “Nine Million Bicycles” for inaccuracy, referring to the size of the observable universe. He proposed correcting the lyrics, saying that the value of 13.7 billion light years would be correct. I looked into that and found that the correct figure is 46.5 billion light years from home. Even on that subject, on which Mr Singh professes to have knowledge, he was wrong—so there is no surprise that he is wrong about homeopathy, about which he has absolutely no knowledge.

To recap, we have what my daughter would call the absolutely bonkers situation where an individual, Singh, who is a physicist, not a physician, with no understanding or experience of homeopathy, is trying to cripple our leading academic medical centre, part of the University College London Hospitals NHS Foundation Trust, whose director—the man running it—is the Queen’s doctor. How mad can you get?

The core problem is not about whether or not homeopathy is effective. There have long been arguments about evidence-based medicine. Professor Sackett, who was responsible for the phrase, did not say it is about whether medicines work or not. He said it is about integrating individual clinical experience and the best external evidence; it is not just about external evidence. It is not just about the medicine—it is about the patient’s and the clinician’s experience. The nub of it is that complementary medicine can reduce the costs on the health service. I have quoted the French EPI3 study, which said that French GPs who integrate homeopathy in their practice use about a third of the antibiotics and psychotropic drugs and half the analgesics, with very similar results, at 20% less cost. That is not taking into account antimicrobial resistance or the adverse effects of analgesics, sleeping tablets or whatever.

There is a turf war here between two sides of the medical establishment, which is actually about resources. We have to resist that. The Secretary of State said, very sensibly, on LBC on 10 September 2014:

“There are some bits of the NHS where it”—

homeopathy—

“is sanctioned by GPs, but it wouldn’t be done without a doctor saying they thought that that was the right thing to do. And what doctors say is the right thing.”

He signed early-day motion 1240, which was about supporting homeopathic hospitals, in the 2006-07 Session of Parliament. It was signed by more than 200 Members—nearly a third of the Members of the House of Commons.

Today of all days—Brexit day—when the Prime Minister will be writing to the European Commission, I found this written answer in the Scottish Parliament from 23 February 2011. The then Health spokesman—no less an individual than the current First Minister, Nicola Sturgeon—replied. This is what she said in reply to a question about the effectiveness of homeopathy in relation to the Scottish Government’s integrative approach to patient care:

“In primary care, costs will relate to the cost of the remedy, which can be cheaper than the cost of orthodox drugs. Practitioners have also noted a reduction in side effects and dependency risks in some cases. In secondary care in Scotland, homoeopathy is only employed within a broader integrative care approach, with surveys showing both enhanced wellbeing and symptom reduction across a broad range of long term conditions, and a resultant reduction in NHS costs through reduced GP and hospital visits and repeat prescriptions.”

Well, there we are. That is what the First Minister in the devolved Administration thinks.

Homeopathy is a wonderful system of medicine. It has been part of the national health service for a long time, and I look forward to hearing from the Minister about the Government’s position.

HIV Treatment

Jim Shannon Excerpts

Wednesday 29th March 2017 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure, as always, to serve under your chairmanship, Mrs Main. It was a particular pleasure to hear the hon. Member for Finchley and Golders Green (Mike Freer) set the scene for us on a subject that is close to his heart and one that he has become a champion for in this House. I congratulate him on that. I have always been here to support him in his endeavours, and I am pleased to do likewise again.

When we think of HIV, as we are doing in this debate on the report, our thoughts automatically go to African nations. They do in my case, and Swaziland in particular, as my parliamentary aide visits and supports an orphanage there. One in every two people there has AIDS, so there is naturally a massive need for care and support of orphans. My heart has long been touched by the needs of the people in that country who have been ravaged by the spread of AIDS, and by the work of the World Health Organisation and other charities such as Teen Challenge and Elim Missions, which are active in my constituency.

However, this debate is about the report, which makes it clear that this is an issue much closer to home as well as one in Africa. We can relate it to our own constituencies. I understand that health is devolved to Northern Ireland—at least it is now; we will see how these talks go. The Minister might be the person making the decisions. We will have to see what happens in relation to that. With great respect, I hope she will not be making those decisions; I hope we will be making them back home, but that is by the by.

In Northern Ireland in 2015 there were 103 new diagnoses of HIV, bringing the total to almost three times what it was in 2006. Some of these figures are shocking and worrying. That is the highest number of HIV diagnoses to ever be recorded in a single year in Northern Ireland. From 2000 to 2014, a total of 557,000 HIV tests were carried out in Northern Ireland.

In Northern Ireland a total of 126 people diagnosed with HIV have died. That includes AIDS and non-AIDS-related deaths. Data obtained from the Public Health Agency showed that 114 pregnancies were affected by HIV from 2005 to 2016. Encouragingly—there is always a good message to be told—the pregnancies were managed to prevent the infection being transmitted from mother to child. That is certainly a bonus and highlights the importance of knowing about infection and managing the birth of babies correctly. We have come forward with medicine and medication over the years in an innovative and very effective way.

In 2015, there were some 6,095 new cases and 88,769 people being treated for HIV across the UK. This is not an African infection; it is a problem in the UK that we must address. In setting the scene for us, the hon. Member for Finchley and Golders Green focused attention on where it should be in this debate: where we are in the United Kingdom. Some 101,200 people were estimated to be living with HIV in the UK by the end of 2015.

As with many illnesses, many people are living with the disease without knowing it. I would like to hear the Minister’s thoughts on how we can reach people out there who are carriers and perhaps do not know it. The clear fact is that, if people are not diagnosed, there is a much greater danger of them unwittingly spreading the infection.

It is estimated that 87% of people are diagnosed; 96% of those diagnosed are accessing treatment; and 94% of those accessing treatment are virally suppressed or “undetectable”—the virus will not show up on tests; it is unable to be transmitted to others. Those are some of the facts. That means that around 13% are undiagnosed and unaware of their infection—they are not able to access care to protect their wellbeing and prevent the onward transmission of HIV to others.

It has been estimated that each new infection costs the NHS between £250,000 and £360,000 in direct lifetime treatment costs. That is something we need to address, and the Minister must at least consider it. The number of new diagnoses in 2015 was slightly lower than in 2014, but new infections have remained roughly static since 2010. The fact that there are new infections each year is something we cannot ignore and needs to be addressed. I am keen to know the Minister’s thoughts on the best way of doing that.

Some 39% of people are diagnosed late, which has a potential impact on their immediate health and therefore the cost of treatment at the point of diagnosis and beyond. The fact that people are diagnosed late indicates that there was a possibility of diagnosis earlier. If that is the case and it has not been done, why? There must be a proactive approach to encourage screening and to reinforce education and learning about the prevention and spread of HIV and sexual health in general.

I tabled a question some time ago, to which the Minister responded, on the increase in sexual infection among those in the 50-to-70 age bracket. The figures indicate a rise in HIV infection among that group as well. I ask this question because it is important to do so. When people get to a certain age in life, they may not be involved in those activities as much as they may have been in the past, but there has been a rise in sexual diseases in that age bracket. I know the Minister responded to that question last year, but I would like to hear an update on her thoughts.

Some of the recommendations in the 2016 report from the all-party parliamentary group on HIV and AIDS on the impact of the Health and Social Care Act on HIV services bear highlighting. The first one that I want to mention states:

“While public health has been devolved, the Secretary of State must ensure that local authorities have enough guidance to ensure there is a minimum service requirement, which they must provide.”

The hon. Gentleman mentioned that in his introduction and clearly outlined the issue. With respect, at the moment the Act is not providing enough clarity or accountability, and it is the Department of Health’s responsibility to ensure that it does.

I look to the Minister, as I always do—she is a very responsive Minister—and ask what co-operation there has been with the regional devolved Assembly in Northern Ireland and the Health Minister there. What plans are in place for such engagement, involving the Secretary of State or Minister of State for Northern Ireland, should we return to direct rule? We cannot afford for health to suffer due to the reluctance of Sinn Féin to enter into government with the party with the largest mandate—the Democratic Unionist party. It is the responsibility of Ministers in this place to step in and step up if necessary and ensure that the people of Northern Ireland have the right strategies in place.

I was quite encouraged by the Library briefing on this debate, which has been extremely helpful. It mentions the pre-exposure prophylaxis drug Truvada, to which the hon. Gentleman referred. There are some excellent medications today, and that is one of them. It is a brilliant, new, innovative drug that can make a difference. It can save lives, stop or at least control HIV infection and give a longer life. We must welcome some of the things that are happening out there and that the NHS is providing, because it is tremendous news.

Lastly, it is clear that the Department of Health needs to ensure there is mandatory guidance for sexual health service bidders to undertake risk assessments and produce action plans, detailing how the HIV treatment service will be transitioned and implemented. We need to have that in place. It is not enough to put a couple of adverts in the media. Although that is good and should be done, it is not enough. We must have a strategy to deal with the prevention of this disease. We must also remember that it is not something that affects only one nation; it affects us all in this nation of the United Kingdom of Great Britain and Northern Ireland, and we must deal with it effectively. I look to the Minister for an indication of how she intends that to be done.

--- Later in debate ---

[Nicola Blackwood]

I think the right hon. Gentleman slightly misunderstood me on the ring fence. We have kept it because we believe that transparency and accountability measures need to be put in place, so that when local authorities move to business rates retention, their decisions can be made in an appropriately accountable way that can be scrutinised properly. We do not feel as though we have that yet, so we have moved the date back a bit. We want to do that effectively and to have proper consultation on the mandate. On his other point, I think it is a bit early in the process to start discussing that.

Given the time, let me move on to service specifications. During the debate we have heard examples of contracts for sexual health services becoming divorced from the provision of HIV services. A key recommendation from the APPG report was to create a joint service specification for sexual health and HIV services. We recognise that the existing service specification for sexual health needs strengthening, which is why it is now being updated. PHE has committed to building on existing commissioning guidance to provide more focused advice and examples of locally designed systems to support the commissioning of HIV and sexual health services.

NHS England is responsible for the service specification for HIV treatment and care, and we think that that remains a sensible division. However, the development of a new integrated service specification for sexual health services will allow us the opportunity to join up our advice to produce a more integrated offer.

I want to recognise the continuing priority of PrEP, which many colleagues mentioned, and the trial that was announced last year by PHE and NHS England. Up to £10 million has been set aside to fund the trial, which is anticipated to include at least 10,000 participants over the next three years. We expect the trial to be under way this summer. It has the potential to change the lives of thousands of people who are at risk of contracting HIV.

[Jim Shannon]

I asked about where the older generation featured in things, as did the right hon. Member for Exeter (Mr Bradshaw), but the Minister has not touched on that yet. If she is not able to do so now, perhaps she can come back to us in writing.

[Nicola Blackwood]

The whole point of developing a much more systematic process and having a commissioning programme that does not allow the fragmentation of services, but instead is much more integrated, is that it will take into account more ageing people living with HIV. We believe that that will deal with the issue.

The hon. Gentleman also asked how we will tackle the issue of undiagnosed people living with HIV in the community. We believe that the strategy of increasing education and introducing compulsory sex and relationships education will be part of that, as will improving our performance, testing and early diagnosis. The work being done through the innovation fund is a key plank of that. Having clear specifications in commissioning guidelines so that we have coherent services for all who seek them is the strategy. We think that is a coherent response.

Preventing Avoidable Sight Loss

Jim Shannon Excerpts

Tuesday 28th March 2017 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I have 27 minutes to speak. I jest, by the way; I am not going to speak for 27 minutes.

[Mrs Cheryl Gillan (in the Chair)]

Mr Shannon, you have plenty of time to speak. I feel I should declare an interest as I am wearing glasses to read my papers.

[Jim Shannon]

It is always a pleasure to serve under your chairmanship, Mrs Gillan. I give special thanks to the hon. Member for Wealden (Nusrat Ghani), who very capably set the scene for us all on a subject that is obviously close to her heart; I believe it is close to the hearts of those of us who are here to participate in the debate as well.

As someone who has needed glasses from eight years of age—I am over 50; well over 50, let me tell you—I have never really known any other way; that is the fact of it. I can well remember those first glasses, with those round circles of glass like milk bottle bottoms. Those were the prescription glasses I wore in the ’60s; we have come a long way to the perfection of eyesight and glasses today. In my case, I wear varifocals, and others in this Chamber probably have the same. I look down to read and look up to look away. Varifocals give that better vision, and it is good to have that.

I certainly have compassion for those whose sight is deteriorating or lost completely. I think losing sight is probably one of the worst things that can happen to anyone. How much do we all appreciate seeing things in colour and all around us? There are some who cannot. My dad lost his sight at a late age in life, and I know it is one of the things that he particularly missed. He used to read his Bible in braille in the last few years of his life. To understand that sight loss can be prevented in some cases is something that we must all work towards achieving, and we must play our part in the House.

The Library pack has been quite helpful, and some of the information it gives is particularly applicable. The fact that sight loss costs the UK economy £28 billion is something that cannot be ignored when it comes to adding equations; we understand and appreciate that we have to balance the books, but when balancing the books we should sometimes do the necessary preventive action that the hon. Member for Wealden referred to.

[David Simpson (Upper Bann) (DUP)]

Only yesterday in my surgery some folk came to see me about sight loss, the lack of appointments and the length of time they had to wait. We have been given the figure this morning of 20 people per month losing their sight, which is a precious thing. If there is a drug that can help to prevent that, surely the onus is on the Government to give people the gift of sight? That is worth pursuing.

[Jim Shannon]

It absolutely is. The hon. Member for Wealden referred to England in her introduction, but Scotland, Wales and Northern Ireland have taken some steps in that direction. At the end of the day, we can certainly do this much better.

Sight loss affects people of all ages, but older people are more likely to experience a sight-threatening condition. That is clearly understandable. Having celebrated another birthday on Saturday past—I have stopped counting birthdays, which I think is probably the best idea; I try to forget about it, but the family keep reminding me that I am of a certain age—I certainly feel a deterioration process in action. That old saying that the spirit is willing but the flesh is weak becomes more and more a reality as I mow the lawn at home and carry out maintenance on the farm.

My glasses prescription has changed greatly over the years, and not for the better. That, again, is part of the ageing process. I am also a type 2 diabetic, so I have to be particularly careful with my eyesight. The former health Minister, now the Financial Secretary to the Treasury, replied to a question I asked about diabetes, and I think the hon. Member for Wealden referred to diabetes in her speech. The hon. Member for Erewash (Maggie Throup) also mentioned it in an intervention. We need to be aware of the complications of diabetes. Early diagnosis is very important.

It is critical to have regular appointments with an optician. I am not sure if everybody has one as regularly as they should. In Northern Ireland, I see my optician twice a year—probably because I am a diabetic. Others probably do it at least on a 12-month cycle. It is important to do so, because an optician can spot things in someone’s eyesight and signs affecting other parts of the body. It is important that the role of the optician is encouraged.

One of the lesser-known reasons for sight loss is leber hereditary optic neuropathy. It is an ultra rare and very disabling disease that leads to blindness in approximately 80% of those affected within one year of the onset of symptoms. It affects just one in 50,000 people and is caused by a disorder of the mitochondria; it usually strikes young men aged between 15 and 35. Again, it can be prevented by early diagnosis, but there are no treatment options routinely available to patients with it in the UK. I often look with envy towards Scotland, because Raxone is currently undergoing a review there, whereas in England it was not selected by the National Institute for Health and Care Excellence. That is a bit of a disappointment. If the Minister does not mind me asking, perhaps he could respond to me on that as well when he gets a wee chance. It is most important.

I will give a Northern Ireland perspective, but I will not be taking the time that we talked about at the beginning. In Northern Ireland, the 2011 census reported that, out of a population of 1.8 million, a total of almost 31,000 people self-reported a long-term condition related to blindness or partial sight loss, representing some 1.7% of the population. However, the figure is set to increase dramatically in the future, as the population ages.

I am not sure if anyone has mentioned this yet, but we have an ageing population. We are getting older, and people are living longer, so this issue will become a bigger factor than ever before. Recent population statistics from 2016 reveal how the age structure in Northern Ireland is projected to change. I will give an example. The population aged 65 and over is projected to increase by 74.5% to almost 500,000 people from mid-2014 to mid-2039, with the result that one in four people—24.7%—will be in that age category. The population aged 85 and over is projected to increase by 157.3% to 88,600 people over the same period, which will see that share of the population increase from 1.9% to 4.4%.

The reason for giving those stats is simple: there will be greater demand on the NHS. The increasing prevalence of sight loss over the next decades requires additional planning, a long-term strategy and policy development now in order that the Government best respond to people’s needs and concerns. That is what we are asking of the Minister, for whom we have the utmost respect, and I know he will reply with conviction and a desire to answer our questions.

I wonder whether this could be done better together, through a UK strategy. I am a great believer in the Union of Great Britain and Northern Ireland. I have been told off this morning for saying that once or twice too often, but I continue to say it because it is important, as it is for my colleagues close to me in the Chamber.

In Northern Ireland we face a particular challenge in relation to timely and responsive ophthalmology treatment. In recent years, many new treatments have been developed, saving the sight of thousands of people who previously would have gone blind. One of our universities in Northern Ireland has been involved in perfecting new drugs and systems to prevent sight loss. An enormous amount of work is going on behind the scenes. Those new treatments are an enormous and welcome step forward.

Some conditions, such as dry age-related macular degeneration, can cause permanent sight loss in a matter of weeks or months. That is why early diagnosis and treatment is vital if a person’s sight is to be saved. It is no surprise that delays to treatment can have a severe impact on patient outcomes. Everybody who has spoken so far has said that, as will those who speak after me.

Many new treatments for sight-threatening conditions require frequent follow-up appointments for monitoring and re-treatment. That has caused a rapid increase in demand for services. Northern Ireland faces a waiting list crisis across a number of specialties, including ophthalmology. I know this is a devolved matter, but I want to give some stats. As of 31 December 2016, some 23,000 people were waiting for a first out-patient appointment in ophthalmology, while 14,221 patients—approximately 62%—were waiting longer than 18 weeks. Statistics also show that patient numbers within ophthalmology are increasing year by year. On 31 March 2013, there were more than 8,000 patients waiting for first consultant-led outpatient appointments, compared with 23,000 in December 2016. That is an increase of 184%.

Severe financial constraints on the health service mean that increased demand for eye care services has not been met with increased resources. That has led to some patients losing sight unnecessarily because they are not seen within clinically safe timeframes. That is the core point we are all trying to make. In March 2016, the Royal College of Ophthalmologists released preliminary findings from a national study indicating that at least 20 patients per month suffer severe and unnecessary sight loss due to appointment delays. That is avoidable—if it is avoidable, for goodness’ sake let us try to address that issue.

The situation in Northern Ireland is similar to that in other parts of the United Kingdom; urgent action is needed so that preventable sight loss is avoided and people do not come to harm while waiting to be seen. With more than 14,000 Northern Ireland patients waiting 18 weeks for an initial appointment with a consultant, and more than 30,000 planned appointments missed due to hospital cancellations or the patient’s failure to attend, now is the time to address the provision of eye care services. This is putting an enormous strain on busy hospital eye departments and overworked NHS staff.

To conclude, while the lessons learned in Northern Ireland must be shared and there must be central learning for all the United Kingdom’s devolved Assemblies and the Government’s Developing Eyecare Partnerships strategy, it is important to resource and implement that strategy if effective change is to happen. We are looking for effective change, because without it, this debate will have failed. We are here to be positive, but we need Government assistance to make this happen.

While additional resources are needed, the reconfiguration or development of services does not necessarily need resources; it just needs a more effective way of approaching services. We cannot wait any longer, as each month of waiting for proper funding and implementation is a month in which people are losing their sight unnecessarily. I have said before that I have the greatest respect for the Minister. I look to him for UK-wide action now, and for the Government to work in conjunction with the devolved Administrations.

--- Later in debate ---

[Julie Cooper (Burnley) (Lab)]

It is a pleasure to serve under your chairmanship, Mrs Gillan. I thank the hon. Member for Wealden (Nusrat Ghani) for securing this important debate, which is long overdue. I also pay tribute to the excellent work that she does on the APPG to reduce sight loss; I was privileged to attend a recent meeting, and she is doing sterling work, for which I applaud her.

We are fortunate also to have the expertise of the hon. Member for Twickenham (Dr Mathias); I am sure that we were all interested to hear her expert opinion. We also heard very human stories from hon. Members representing constituents all over the country. They made very powerful cases. As I said, a debate on this subject was long overdue. Given the scale of the problem, to which many hon. Members alluded, the fact that it barely gets a mention in Parliament from one month to the next is quite shocking.

It has been said already, but is worth stressing, that more than 2 million people in the UK are living with sight loss. This is not a problem that affects a small number of people; it is a major problem. One in five people over 75 and one in two people over 90 are living with sight loss. With regard to the impact on the wider NHS, every year there are 2.6 million GP appointments for eye-related conditions and 270,000 accident and emergency visits for acute eye problems. And the problem is not going to go away. We have heard that the number of over-85s will double over the next two decades and that problems with sight loss are also set to double. Research by the Royal College of Ophthalmologists shows that there has been a 37% increase in eye clinic attendances in the UK over the past 10 years, and demand is growing year on year, making it the specialism with the second highest out-patient attendance. New treatments as yet unimagined will inevitably add to that demand.

For me and, I am sure, most Members in the Chamber, the most alarming statistic is that more than 20 people go blind unnecessarily every month in England. That is 20 people who did not need to lose their sight. It is a really shocking statistic. Many Members, including the hon. Member for Motherwell and Wishaw (Marion Fellows) and my hon. Friend the Member for Great Grimsby (Melanie Onn)—I only represent great Burnley—have alluded to the horrors of blindness. Particularly affected are the elderly, people with dementia and people suffering from diabetes.

[Jim Shannon]

I have a very good friend back home in my constituency who has diabetes. He decided to go for laser treatment to correct his short-sightedness and, as a result, he lost sight in both eyes. There can be complications for diabetics who try to improve their sight. For my friend, that became a horror story rather than a good story. People who are diabetic need to take special cognisance of the possibility of complications before they do anything. I apologise, Mrs Gillan, for intervening for a wee bit longer than usual.

[Julie Cooper]

I am grateful to the hon. Gentleman for that important intervention. Diabetes brings its own special problems, which we need to be widely aware of and build into any future strategy.

Some 20 people every month in this country—one of the richest countries in the world—go blind unnecessarily; it is not because we lack the ophthalmic expertise to save sight. On the contrary, we have many leading centres of excellence. Indeed, the Manchester Royal eye hospital that serves my constituency is one of the finest centres in the whole of Europe. People are going blind because capacity in the service is failing to keep pace with demand. For many eye conditions, including glaucoma and macular degeneration, early diagnosis and regular treatment are vital if sight is to be retained. For example, if glaucoma is diagnosed early, good sight can be retained, but in the overstretched and under-resourced system that we have now, 17% of those diagnosed lose their sight.

Currently, fewer than half the patients requiring multiple appointments are seen within the optimum timeframe, and the statistics given by my hon. Friend the Member for Great Grimsby about the effect on her constituents are truly shocking. Research shows that more than half a million appointments in England were cancelled by eye departments in 2015-16. It is therefore not really surprising that the Royal National Institute of Blind People reports that 50% of the incidences of blindness could have been avoided. It is undoubtedly a source of misery for the individuals affected, causing untold suffering, restrictions on lifestyle and a host of missed opportunities. In addition, as has been referred to, it places massive additional pressures on social care services and the wider NHS. I think that we all agree, on both sides of the House, that services need to improve.

There are already many examples of pockets of good practice—deploying mobile units and the multi-skilling of staff—where experts are desperately trying to compensate for a lack of resources to deal with increased demand. Clearly, the knowledge that demand will continue to grow means that there cannot continue to be business as usual. The clinical professionals have identified four areas that need to improve. They have said clearly that there is a need for an overall strategy—a direction from above and from Government. It is significant, as the hon. Member for Wealden pointed out, that in Zimbabwe there is a national strategy to prevent sight loss and retain sight, but in England we do not have such a strategy—I am shocked. The professionals also call for improved access to data to make their job easier and more efficient; to avoid duplication and ensure that they have access to the best possible information about their patients in a timely fashion.

In addition, the professionals call for services to be provided locally. That is particularly important because many of the patients are elderly. The current system of geographically distanced centres seems to be in direct contradiction to the aims of the five year forward view, which asks for treatments to be delivered locally. Current financial constraints must also be reduced to increase capacity. That makes sound economic sense, as we heard from the hon. Member for Motherwell and Wishaw, because it is estimated that the failure to tackle this problem actually costs the UK economy a shocking £28 billion—no wonder the parliamentary researchers got the figure wrong. Like me, they probably could not believe the figure when they saw it; £28 million sounds like a lot, but the cost to the UK economy of failing to act on this issue is actually £28 billion.

I want to pick up on some of the other points made by hon. Members today, most notably on prevention. Early diagnosis and prevention are extremely important, and it is a fact that in many areas across England school eye tests are becoming a thing of the past. Most of us will have had our eyes tested in school as children and had difficulties picked up then, but many areas are choosing not to commission such tests. In deprived communities, such as those in my constituency, many people simply cannot afford eye tests that are charged for and therefore choose not to prioritise them. As eye sight deteriorates with age, many people make do with cheap, over-the-counter spectacles. The point has been powerfully made that people do not just visit their optometrist so that they can read more efficiently; they also need to check and make sure that there are no early signs of other diseases. That is really important.

I totally agree with the point made by the hon. Member for Twickenham about treatment. How can an expert look a patient in the eye knowing that a treatment is potentially being developed but that, for reasons of resources, in one of the richest countries in the world, it is not a priority for us? I ask the Minister to consider all these points. STPs have been mentioned, and they are an exciting opportunity to address some of the issues raised today. Like the hon. Member for Wealden, I have looked at many of the STPs for many reasons; worryingly, even in the ones that do mention sight loss and eye care services, it is a passing mention—a tick-box exercise—and I hope that the Minister will address that. Today we look to the Minister to outline the action that the Government will take to address the many issues that have been raised, and to address what has become a national scandal.

Rare Diseases Strategy

Jim Shannon Excerpts

Tuesday 28th March 2017 Westminster Hall

[Ben Howlett (Bath) (Con)]

I beg to move,

That this House has considered implementing the UK Strategy for Rare Diseases.

It is a pleasure to serve under your chairmanship, Mr Pritchard. Since taking over as chairman of the all-party parliamentary group on rare, genetic and undiagnosed conditions in 2015, I have had the great privilege of meeting and helping patients, children and their parents and families. To explain the enormity of the situation, one in 17 people will be affected by a rare disease at some point in their life. That equates to approximately 3.5 million people in the UK. There are currently between 6,000 and 8,000 rare diseases that have been identified, with patients affected at all ages. However, for those who have a known rare disease, the picture is slightly better than for those whose disease is not known. Many children and adults who I have met do not have a diagnosis. That is both deeply distressing and prevents adequate care from being provided fully. It results in a wide range of issues for patients and parents, who are often desperate to find the answers. Despite the scale of the issue, unfortunately a significant proportion of people with a rare, genetic or undiagnosed condition still do not have access to adequate care and treatment.

Given the enormity of the problem, the Government published their rare diseases strategy in 2013. It was heralded by the rare diseases and medical communities as a major breakthrough. While symptoms vary from condition to condition, there are a number of issues that patients and families affected by rare diseases face collectively—for example, the difficulties associated with accessing a timely and accurate diagnosis and the appropriate co-ordination of care. The publication of “The UK Strategy for Rare Diseases” should have heralded a new era of treatment and care for rare diseases patients in England, Scotland, Wales and Northern Ireland. Containing 51 commitments, the strategy aims to ensure that health and social care systems across the nations provide those living with rare conditions with the highest quality of evidence-based care and treatment, regardless of where they live in the UK.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing this important issue to Westminster Hall for consideration. There are some 60 different types of muscular dystrophy, and 1,000 children and adults for every 1 million of the population are affected—70,000 people are affected by a muscle-wasting condition in the UK. Does he share my concern that our current strategy helps those who live a life of suffering because of those terrible diseases, and does he believe that we are offering the best, or enough, support to their carers at this time?

[Ben Howlett]

The hon. Gentleman and I have discussed rare diseases many times in this Chamber. I pay tribute to his work and that of his party on pushing this agenda in Northern Ireland; that also has implications for England. I agree with what he said and I will come on to evidence given to the all-party group—he mentioned a range of different things—including that of Muscular Dystrophy UK. I hope hon. Members find that report and the evidence that we refer to beneficial.

Without wishing to go into too much detail about the 51 recommendations, given the limited time that we have, the UK strategy aims to

“ensure no one gets left behind just because they have a rare disease”.

Features include setting a personal care plan for every patient, bringing together health and social care services; ensuring that patients, their families and carers have the information that they need and are listened to and consulted; and improving diagnosis and intervention and strengthening research to improve personalised approaches to healthcare for those with a rare disease.

The four countries in the UK were given a deadline of 2020 to implement the commitments. Although the Health Departments in the devolved nations have all published country-specific implementation plans to reflect their respective health services, structures and priorities, the Department of Health in England has not yet co-ordinated a plan for England.

At this point, I want to pause to thank all the charities and organisations across the country—including the Centre for Rare Diseases in Birmingham, the Birmingham children’s hospital, Lupus UK and Muscular Dystrophy UK—that have not only submitted evidence to our report, but done so in advance of this debate. Although I cannot name a million and one organisations, given the limited time, I—and, I think, the whole Chamber—wish to thank them for all their work on helping patients with rare, genetic and undiagnosed conditions.

As has been referred to, between October 2016 and January 2017, the all-party group on rare, genetic and undiagnosed conditions conducted an inquiry into the implementation of the UK strategy for rare diseases in England. It held three hearings with the Department of Health and its arm’s length bodies. More than 300 patients, family members, patient organisations, clinicians and industry representatives also submitted evidence. I thank all those who did so and all colleagues who took part in the evidence sessions, which were very interesting. Overall, the findings were that the strategy is working well and being implemented effectively in some areas. However, where the strategy is failing to be implemented, the problems it was designed to fix are in some cases getting worse or, at best, failing to get better. I will detail the findings of our report and ask the Minister a number of questions.

I was pleased with the response to a question I asked during Health questions last Tuesday. The Under-Secretary of State for Health, my hon. Friend the Member for Oxford West and Abingdon (Nicola Blackwood)—she is sadly unavailable for this debate, but I thank the Minister here today for stepping in at short notice—said that

“the UK strategy for rare diseases needs to be translated into an implementation plan”.—[Official Report, 21 March 2016; Vol. 623, c. 772.]

She also said that that was one of her prime commitments, and I was pleased to hear that from her at the Dispatch Box. However, the evidence we received for the report suggested that the Department of Health does not intend to develop an implementation plan and believes that NHS England should assume responsibility for doing that, so will the Minister confirm who will introduce the implementation plan, as promised last week?

NHS England also suggested in evidence that it does not intend to develop an implementation plan and has neither the remit nor the capacity to influence all 51 commitments in the strategy. Given that evidence, will the Minister commit to finding a way either for the Department of Health to deliver that agenda or for NHS England to be given direction to do so?

[Jim Shannon]

I thank the hon. Gentleman for being gracious in giving way. He will be aware of the neuromuscular complex care centre that was set up in Queen Square in London in September 2014. Will he encourage the Minister to visit that centre to see the benefits of co-ordinated, specialist, multidisciplinary care delivery that could be replicated across the United Kingdom of Great Britain and Northern Ireland?

[Ben Howlett]

I am sure that the Minister heard that and will pass it on to the Under-Secretary of State for Health, my hon. Friend the Member for Oxford West and Abingdon.

We also saw evidence of poor communication between the organisations responsible for implementing individual commitments and other stakeholders involved in the strategy. What plans does the Minister have to better co-ordinate that communication? Many patients do not have access to the appropriate treatment or information about their condition, and the barriers to accessing information about a condition begin as soon as a diagnosis is made. Unfortunately, that leads to patient care continuing to be poorly co-ordinated.

I know that the Minister is a superb champion for those with rare diseases, and given the rare condition that the Under-Secretary of State for Health, my hon. Friend the Member for Oxford West and Abingdon, has, I hope that he provides more information about the Government’s commitment from last week. Hopefully they can commit to the Department of Health developing a comprehensive implementation plan that describes actions for its arm’s length bodies in particular. An implementation plan would offer direction to bodies involved in rare disease patients’ care, so that they can take action to improve the services that patients need. It would help patients to understand what progress is being made and to ask the right questions when it is not. It would also help to ensure that the needs of rare disease patients and their families are considered in decisions about patient care and access to treatments taken by bodies involved in the strategy.

Health and Social Care Budgets

Jim Shannon Excerpts

Tuesday 14th March 2017 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Hackney South and Shoreditch (Meg Hillier) on securing this debate and thank you, Mr Bailey, for making sure that we all get a chance to participate. As my party’s health spokesperson, this is an issue that I long considered in the run-up to the Budget, hoping and praying that there would be funding for drugs such as Orkambi for cystic fibrosis sufferers, money available for the training of additional GPs and more cancer drug funding. The list is exhaustive—we all have a long list of things—but I want to mention three issues in the short time that I have.

Together for Short Lives provided me with a briefing full of information for this debate. It is clear that local authority funding for children’s palliative care charities does not reflect the level of social care provided by such organisations. In the spring Budget, the Government announced a further £2 billion for adult social care funding over the next three years.

Given the vital role that these charities play in delivering children’s social care, including short breaks, what guidance will the Government give local authorities to make sure that they provide financial support to those organisations? Will the Government use the forthcoming Green Paper on social care funding to consider evidence and proposals for increasing funding for children’s social care? The care costs for children’s palliative care rose by 10% in the last year, due to an increase in the number of children with life-limiting and life-threatening conditions and the increasing complexity of their needs and the care that they require.

As a member of the all-party parliamentary group on blood cancer, I am aware of the inquiry into blood cancer care that is being launched on Wednesday. Blood cancer, as the Minister knows, is the fifth most common cancer in the UK and the third biggest cancer killer, yet awareness among the general public and policy audiences is very low. I trust that the Minister will look at that report. It is important that we consider reports, because we want the willingness to act on them. I respectfully ask the Minister to consider that.

My third point is about multiple sclerosis. Some 100,000 people in the UK have MS—4,500 of those in Northern Ireland. Great research has been done by Queen’s University Belfast to revolutionise life for people with MS. They are trying to find a way forward, looking at how the damaged brain repairs itself. The research is good stuff. I remind Members of the importance of ensuring that funding is available for research into diseases. I believe the Department must step up and make sure that that happens.

I know that there is not an unending supply of funding, but I believe that it is necessary that the money is used in the most productive way. I am subsequently asking that consideration be given to the issues that I and others have raised this morning. My mother often said, “Your health is your wealth,” and that is very much the truth. We must do all we can to protect the real wealth of this nation, and make sure that help is available to those who need it most at the time they need it.

Pandemrix Vaccine: Compensation

Jim Shannon Excerpts

Wednesday 8th March 2017 Westminster Hall

[Tracy Brabin]

I will come on to that point, but I totally and utterly agree. As the hon. Gentleman will know, the Government’s foot-dragging is causing unacceptable and upsetting suffering and distress for the families involved.

Although I acknowledge the difficult balancing act involved in weighing the risk of a pandemic against the risk of fast-tracking a vaccine’s licensing, that does not excuse the fact that some patients were not made aware of the facts, nor does it excuse the Government from subsequently attempting to avoid responsibility for the damage caused. Making the vaccine available at the time of the pandemic clearly came with a degree of risk. GSK was given an indemnity from any liability by the UK Government. My constituent has made it clear to me that she was not informed that the vaccine had not been fully tested or that GSK had obtained an indemnity. Therefore, as the result of advice given to his mother by the NHS, my young constituent Sam received the vaccine on 27 April 2010. He was four and a half years old.

Four months later, concerns were raised in Finland and Sweden about the association between the vaccine and narcolepsy. Following that, a study by the UK Health Protection Agency and others, which was funded by the Department of Health and the HPA, found that around one in every 52,000 to 52,750 Pandemrix jabs led to narcolepsy. The results of that study were published in The BMJ in 2013 and were consistent with the findings of the aforementioned Finnish and Swedish studies. Pandemrix stopped being given to children in the UK in 2011, but that was too late for Sam and dozens of children like him.

Sam has been affected by 14 severe or chronic neurological issues, including narcolepsy and cataplexy. He suffers from night terrors in which he can see and smell dead people. He suffers from a damaged heat regulation system, automatic behaviour, micro-sleeps, temper issues, joint and muscle pain, anxiety and depression. Sam is now 11 years old and has faced unimaginable strain. In addition to being prohibited from enjoying a normal childhood, he lives in a world in which most people know little about his condition and misunderstand his symptoms. Shockingly, on one occasion while Sam was passed out in the street as a result of his condition, a dog walker allowed her dog to urinate on him. No 11-year-old should be expected to face the indignity and pressures that children such as Sam live with as a result of the Pandemrix vaccine.

Tragically, Sam has tried to commit suicide several times. We know from a coroner’s report that one 23-year-old woman took her own life after telling her family that living with narcolepsy after receiving Pandemrix had become unbearable. This is all too desperately sad.

The link between Pandemrix and narcolepsy has had a profound effect on families. My young constituent’s parents have found themselves under immense pressure, and in October 2016 his mum Di had no choice but to call a liquidator into her engineering business. It was impossible for her to work and ensure that her son’s complex care needs were met. Life is unacceptably hard for Di and Sam. They are very grateful to Narcolepsy UK, which receives no assistance from the Government but has been a source of huge support for them.

The Vaccine Damage Payments Act 1979 was intended to help to ease the burden on individuals for whom a specified vaccine had caused severe and permanent disability.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing forward this important case. The Court of Appeal has ruled very clearly on this matter and issued a telling judgment that opens the door to people who have suffered as a result of this so-called vaccine. I believe that its decision enables those people to get the compensation that they need, both physically and morally. Does she feel that the Government must now follow suit and give the go-ahead for compensation to be released?

[Tracy Brabin]

The hon. Gentleman is right. There have been some one-off payments, but they need to be made across the board. The 1979 Act provides for affected patients to receive one-off tax-free payments of £120,000, which would go some way to securing their long-term care needs.

Prior to September 2013, the Government said there was insufficient evidence to establish a causal link between the Pandemrix vaccination and the development of narcolepsy. However, following the aforementioned study commissioned by the Department of Health that recognised the link between Pandemrix and narcolepsy, the Government have conceded and recognised the link.

In spite of the Government’s acceptance of the link between Pandemrix and narcolepsy, they have delayed the processing of applications by denying them, disputing the severity of the disability. They have even appealed a case in which they were ordered to make a payment to one such affected child. In my view, for the Government to make such appeals through the courts system is a poor use of public money and an insult to those families whose lives have already been turned upside down. I hope that the Minister will disclose how much public money has been spent in the courts to delay making payments to those affected by Pandemrix.

Sam’s parents made an application for a vaccine damage payment, which was unsuccessful on the basis that he is not severely disabled enough. For those vaccinated after 31 August 2010, the reason given for refusal is that the vaccine does not fall within the remit of the Act. All appeals against the decision to decline payments are being held up while the Government battle the family of the aforementioned child through the courts. Most recently, the decision for the child to be awarded the payment was upheld at the Court of Appeal. I sincerely hope that the Government will accept that outcome and take the case no further.

To give some context to the UK Government’s position, Sweden, Finland, Norway, Iceland and France have already compensated those who developed narcolepsy as a result of the Pandemrix vaccine. Sam is in receipt of disability living allowance, meaning that the Government recognise he is disabled. Why, therefore, do they not consider him to be disabled enough to qualify for a payment under the Vaccine Damage Payments Act? I say to Ministers: spend one day shadowing Sam or another constituent who is living with narcolepsy caused by Pandemrix, and I assure them that they will consider the disability severe enough for a long overdue payment from Government.

In addition to financial support through the Vaccine Damage Payments Act, children affected by Pandemrix require assurances over the long-term development and supply of the drugs that will alleviate their symptoms. Currently, my young constituent receives the drug Xyrem, which is expensive and not licensed for use in children. Sam receives it through a scheme funded directly by the UK Government and GSK, which has been a godsend to him and his family. However, there is a postcode lottery when it comes to access to Xyrem. Many trusts refuse to prescribe the drug, and until recently Sam’s prescription had to be collected from Sheffield Children’s hospital—a 60-mile round trip.

I am advised that the scheme that Sam and others like him currently benefit from is due to end in a year’s time. Sam’s mum advises me that he could not function without it, and as such I ask that the Government either commit to continuing the scheme in the long term or ideally provide an alternative that is secure and accessible to all. I also encourage them to consider opportunities to support research into medicines to alleviate the symptoms suffered by those affected. Clinical understanding of the condition is limited and there is definitely room for improvement.

I have a handful points on which I would be grateful for a response from the Minister. First, by virtue of GlaxoSmithKline requiring an indemnity, there was recognition that the vaccine carried a risk. Reliable studies now link the vaccine to narcolepsy. I would therefore welcome recognition from the Government of what has happened to those affected by Pandemrix and an apology to those families affected both by the incident and by subsequent refusals to provide support. It may be useful if the Government publish the terms of the indemnity provided to GSK so that the public are aware of the acknowledgement of the risk carried by the vaccine.

Moreover, in response to my recent written parliamentary question 64695, the Minister said she has no plans to amend the Vaccine Damage Payments Act. I ask her to think again, particularly when considering support for those affected who received the vaccine after August 2011, because it is clear that when the law fails to work for children like my young constituent, it is time for the law to change.

We know that the Swedish, Finnish, Norwegian, Icelandic and French Governments have already made payments to those affected. The Government should therefore support those who have been affected, and they should be concerned about and apologise for the delay in making payments and its effects. They should also put an end to legal action to prevent payments to those who have been damaged by Pandemrix and they should end the delay in processing claims and appeals. They should also recognise that such delays can and will undermine public confidence in vaccinations, which is something that all those with concern for public health will wish to avoid.

I end with some words from Di, describing how Pandemrix has changed her life. Di said to me:

“Life after the vaccine is totally changed. Our son needs 24/7 care, including getting up several times during the night. He is in almost continuous, intolerable pain, had severe headaches every day. He’s not able to go anywhere without careful planning, needs schedule naps, has several specialist meetings every month, so misses school. Sam is scared for his future and we are frightened for his safety.”

[The Parliamentary Under-Secretary of State for Health (Nicola Blackwood)]

It is a pleasure to serve under your chairmanship, Ms Ryan, on International Women’s Day. I congratulate the hon. Member for Batley and Spen (Tracy Brabin) on securing this, her first Westminster Hall debate, on an important and sensitive topic. She gave a moving account of her constituent Di and her son Sam’s battles with narcolepsy and cataplexy, as did my hon. Friend the Member for York Outer (Julian Sturdy) on behalf of his constituent, Ben Foy. The hon. Lady clearly articulated what she would like to see happen as a result of the debate. I am grateful to her for her opening statement in support of the life-saving effects of vaccinations and her recognition of our world-class immunisation programme. It is important that we remember that as we discuss some of the issues at hand today.

As the hon. Lady has focused the debate on the specific vaccine Pandemrix, it is right that I start by explaining why it came to be used in the UK, although she did outline some of that. Pandemrix was developed for use in a flu pandemic. Flu pandemics pose a challenge for any Government, and they occur when a flu virus emerges and spreads around the world and most people do not have immunity.

Each pandemic is different. The nature of the virus, the population groups most likely to be affected and its impact cannot be known in advance. It is impossible to predict the severity of a new virus strain. Large swathes of the population can become infected over a relatively short period of time if transmission spreads rapidly. The potential impact of pandemic flu makes effective measures to limit the spread and morbidity of virus infection a public health priority. Countermeasures are employed in combination, including vaccination when possible.

As the hon. Lady knows, the most recent flu pandemic was H1N1 swine flu in 2009-10. All Governments have a responsibility to protect public health in such a situation. The decision to commence the swine flu vaccination programme, made by previous Ministers in 2009, was based, as she said, on the expert advice of the Joint Committee on Vaccination and Immunisation. Pandemrix was one of two vaccines used in the UK in that pandemic. Thankfully, the H1N1 strain of swine flu turned out to be relatively mild, but we should not forget that it still caused more than 450 deaths in the UK.

The hon. Lady clearly described the consequences and impact that narcolepsy and cataplexy have on Sam’s life. I assure her that I do not underestimate how distressing narcolepsy and cataplexy can be. As someone who lives with a complex chronic illness that causes me to collapse in the street at times, I know how vulnerable that can make both those who live with the condition and their families feel. It is important that anyone who lives with narcolepsy receives the appropriate care and attention to manage their condition.

The hon. Lady set out her understanding that Pandemrix has caused narcolepsy for some individuals, including her constituent, Sam, as did my hon. Friend the Member for York Outer in the case of his constituent, Ben Foy. Causation is currently one of the issues in dispute in the ongoing legal proceedings in which the Department of Health is involved, alongside the claimants and the vaccine manufacturer. Those legal proceedings are much wider than the issue of causation and cover many other areas. Until those proceedings are resolved one way or the other, it is not appropriate for me to comment on that in detail; it is a process that should be allowed to continue without interference from a politician. However, I assure the hon. Lady that I am deeply concerned about this and will keep a close eye on it as Minister.

The hon. Lady wants to ensure that Sam and people like him are adequately compensated for the development of narcolepsy following Pandemrix vaccination, and has set out the changes she would like to see to the vaccine damage payments scheme to address that. It is important to be clear that the VDPS was not designed to be a compensation scheme; there is no assessment of what losses were actually suffered. Someone who wishes to seek compensation needs to pursue a claim against the vaccine’s manufacturer. There are ongoing personal injury claims in this case, and it is important that those proceed without interference as well.

The VDPS was established in 1979 to help ease the burdens of individuals for whom, on very rare occasions, vaccination has caused severe disablement. The extent of that disablement is assessed on the same basis as for the industrial injuries disablement benefit scheme. The VDPS provides a one-off, tax-free lump sum payment of £120,000 for those who are severely disabled as a result of a vaccination against the diseases listed in the 1979 Act and diseases that have been specified since 1979 by various statutory instruments. Those vaccinations are within the childhood vaccination schemes.

The hon. Lady noted that Sam’s mother applied to the VDPS but her claim was rejected. The hon. Lady claims that was because Sam was not severely disabled enough, but my understanding is that, although the DWP agrees that Pandemrix can cause narcolepsy in theory, it did not do so in this particular case; the DWP did not accept causation in this particular case, rather than its not accepting that Sam was severely disabled enough. I have a different understanding from the hon. Lady, so perhaps she would like to write to the DWP for clarification.

I should also clarify that the Department of Health is responsible for policy and legislation for the VDPS, but the DWP is responsible for assessing claims, making payments against successful claims and handling appeals. To qualify for a VDPS payment, a claimant has to meet two legal tests. The first is to establish, on a balance of probabilities, that the disablement was caused by vaccination against a disease covered by the VDPS, and the second is that the resulting disablement is severe—60% or more—assessed on the same basis as for the industrial injuries disablement benefit scheme.

Decisions take into account advice from medical advisers who are fully registered doctors with a licence to practise and who have also undertaken special training in disability assessment. They review each claimant’s medical records and advise the DWP’s decision maker on causation and disablement. It is therefore important that the hon. Lady clarifies what happened in her constituent’s case, as it is for my hon. Friend the Member for York Outer in the case of his constituent.

Each claim is decided upon its own evidence. If a claimant disagrees with the outcome, they have the right to request a reversal of the Secretary of State’s decision. There is then an opportunity to provide further information to support that request, and the case will be reconsidered. They can also challenge the decision to reject the claim through a first-tier tribunal.

The hon. Lady also raised more general questions about how the VDPS operates and has suggested changes that she thinks are needed. I will address as many of those questions as I can in turn; if I do not get to some of them, I will write to her. She suggested that anyone who has had a Pandemrix vaccination should be eligible for a VDPS payment if they have developed narcolepsy following a vaccination. The Vaccine Damage Payments Act is based on diseases, not specific vaccines, so it is not possible to include Pandemrix in that legislation. However, the list of specified diseases covered by the Act already includes pandemic influenza A—swine flu—for which vaccination was administered from 10 October 2009 to 31 August 2010. That was a temporary addition considered appropriate by the Ministers at the time. Pandemrix-related claims are therefore already eligible under the VDPS, so long as other eligibility criteria are also met. I am aware that some individuals received a Pandemrix vaccination outside the timescale covered by the Act, and that that was the subject of a debate in the House; perhaps the hon. Lady would like to look at that, and if she has any further questions for me, I will be very happy to answer them for her and her constituent.

The hon. Lady also made the case that the level of the VDPS payment is not adequate to meet the needs of someone with narcolepsy. As I mentioned earlier, that is because the VDPS is not a compensation scheme and the sum paid is not based on an assessment of losses; it is a one-off, tax-free lump sum payment to help ease the burden. It must be seen in the context of wider help and support for the severely disabled within our benefits system, but payments through the scheme cannot meet all of their needs. There are no plans at the moment to increase the value of the payment, but as I mentioned earlier, it is open to individuals to pursue personal injury claims for compensation, in addition to applying to the VDPS.

The hon. Member for Strangford (Jim Shannon) raised the recent Court of Appeal judgment on how disablement is assessed. I can confirm that the Government will not appeal that decision. DWP medical advisers will now consider future prognosis in addition to the current level of disablement when assessing claims. Previous cases in which causation has been accepted will be reconsidered in accordance with the Court of Appeal judgment where claimants consent to a further investigation of their medical history.

[Jim Shannon]

Will the change at the DWP following the Court of Appeal’s decision start immediately?

[Nicola Blackwood]

It will start as soon as it can be implemented.

I will also follow up on the point that the hon. Member for Batley and Spen made about Xyrem. The scheme for its supply is due to continue until the personal injury claims are settled, at which point it will be reviewed. I hope that reassures her. I will be happy to look into the issue that she raised about a postcode lottery to try to understand how that situation can be eased.

We do not have a huge amount of time left, so I will bring my remarks to a close. I assure the hon. Lady that I have every sympathy for Sam and others affected by narcolepsy; I have a small amount of understanding about quite how distressing that can be. The hon. Lady should not consider the VDPS in isolation as a means of supporting Sam and others like him. It is part of a much wider package of care and support that is available to people with disabilities, including the NHS, social care and the benefits system. It is important not to leave the debate with the impression that vaccines are dangerous. Vaccine safety is of paramount importance, and with modern technology and stringent manufacturing and control processes, vaccines are the safest they have ever been. I hope that, by the end of the debate, hon. Members will know that the Medicines and Healthcare Products Regulatory Agency and the Government’s independent expert advisory Commission on Human Medicines keep the safety of all vaccines under review. Serious side effects are, thankfully, very rare.

While it is important to have a scheme such as the VDPS in place—I am grateful to have had the opportunity to hear the views on it of the hon. Lady and of my hon. Friend the Member for York Outer, who is no longer in his place—it is also important to acknowledge that we have a world-class immunisation programme that is the envy of many other countries that are not able to prevent the diseases we do in the UK. Immunisation is a vital way of protecting individuals and the community as a whole from serious diseases. Uptake for UK immunisation programmes is more than 90% of the target population for most childhood vaccinations. Vaccinations save lives, and I strongly encourage families to take them up when offered. I assure the hon. Lady that I have listened to everything she has said and will consider it going forward as the Pandemrix case continues.

Question put and agreed to.