Contaminated Blood and Blood Products

Baroness Ritchie of Downpatrick Excerpts

Thursday 24th November 2016 Commons Chamber

[Diana Johnson (Kingston upon Hull North) (Lab)]

I beg to move,

That this House notes the Government’s recent announcement on the reform of the support schemes for people affected by contaminated blood and blood products; recognises that the contaminated blood scandal was one of the biggest treatment disasters in the history of the NHS; believes that those people affected should have a reasonable standard of living and not just be removed from poverty; is concerned that bereaved partners of people who died with HIV/AIDS and those reliant on regular top-up payments will be worse off; is concerned that the new payments for people infected with Hepatitis C are not commensurate with the pain and suffering caused; notes that people who were infected with other viruses, those who did not reach the chronic stage of Hepatitis C and bereaved parents are not mentioned in this announcement; and calls on the Government to use the funds from the sale of Plasma Resources UK to bring forward revised proposals that are properly funded and which provide appropriate support to all affected people.

I thank Members of the Backbench Business Committee, who, since the Committee was established, have always been very generous in recognising the importance of this issue to many of our constituents. This is the third Backbench Business debate that we have had on the subject.

It is more than 45 years since the first people were infected with HIV, hepatitis C and other viruses from NHS-supplied blood products. Their lives, and those of their families, were changed forever by this tragedy. The contaminated blood scandal is now rightly recognised as a grave injustice—the worst treatment disaster in the history of our country’s health service—but those affected are still waiting for a proper financial settlement that recognises the full effect that the scandal has had on them and on their families. This group of people have campaigned for far too many years for justice, at the same time as dealing with illness and disability.

The current financial support for those affected is simply not fit for purpose. That stark fact was laid bare in the inquiry of the all-party group on haemophilia and contaminated blood in January 2015. This quote is on the first page of our report:

“You can’t give us back our health. But you can give us back our dignity. This tortured road has been too long for many of us. But for the rest of us, please let this be the final road to closure.”

Thankfully, we all now agree that the current support arrangements cannot continue, and that we need to create a scheme that gives this community back their dignity.

I welcome the efforts made by the former Prime Minister when he was in office. I welcome the Under-Secretary of State for Health, the hon. Member for Oxford West and Abingdon (Nicola Blackwood), to her new post and I welcome Lord Prior of Brampton to his new position. I was happy to meet him last week, alongside other APPG members, to discuss the new support arrangements.

Although we are all agreed on the need for a reformed scheme, I cannot agree with the Department of Health that its proposed settlement is sufficient. The purpose of this debate is to highlight the aspects of the new support scheme that will not provide the support that these people need, following the hasty announcement made by the former Prime Minister as he left office in July 2016.

In my speech, I want to stress five key issues that the Department of Health urgently needs to address. The first issue concerns the differences between the country schemes in Wales, Scotland and Northern Ireland. We need to know what support people in all four countries of the United Kingdom will get. While Scotland and England have set out their own separate support schemes, in Wales and especially in Northern Ireland people desperately need some certainty about the help they will receive.

[Ms Margaret Ritchie (South Down) (SDLP)]

I thank my hon. Friend for securing this debate along with other right hon. and hon. Members. I have been in touch with the Minister for Health in Northern Ireland and there has been no progress on this matter. I and other hon. Members from Northern Ireland have constituents who have suffered from the ill effects of contaminated blood for over 45 years.

[Diana Johnson]

It is very worrying to hear that there has not been any progress on what is happening in Northern Ireland, so the Minister needs to explain to the House what work is going on.

--- Later in debate ---

[Ms Margaret Ritchie (South Down) (SDLP)]

I pay tribute to my hon. Friend the Member for Kingston upon Hull North (Diana Johnson) for her strong campaigning zeal in relation to this subject. The contaminated blood and blood products scandal has touched the lives of many people over the past 40 years. Sadly, many people have died, leaving loved ones who had spent their lives caring for them. The scandal has not only affected those who are infected but changed the lives of their families as well. We have had many debates in the House and Westminster Hall calling for a full and final settlement for those affected, and what we see today is an improvement on what was offered to them in January, but we still have a distance to go if we are to give those people and their families the means to have a decent standard of living.

Questions remain unanswered as to why those infected blood products, which infected others, were imported from the United States—and perhaps other places—into Northern Ireland and Britain. I understand that the Under-Secretary of State for Health, the hon. Member for Oxford West and Abingdon (Nicola Blackwood), is not the Minister responsible for this matter, but I hope that she can answer my questions today. I hope that she will pursue Lord Prior to ensure that we get answers. As the right hon. Member for North East Bedfordshire (Alistair Burt) said, there is a collective shame surrounding this issue. It is an issue without political boundaries or barriers, because it has impacted on families throughout the UK.

I return to a point that I raised in an earlier intervention, to highlight the issues that we face in Northern Ireland. I have written to the Northern Ireland Health Minister, Michelle O’Neill, because there has not yet been an announcement on the scheme for Northern Ireland. She replied to me in early August, after the Prime Minister’s statement here in the Commons. She stated:

“I am currently considering options for the future of financial support for patients and families in the north of Ireland before making a decision.”

That is a similar answer to those that I received from her predecessors. There is no sense of urgency on their part, and no recognition or acknowledgment of the fact that this is a serious matter, which has impacted on people’s lives. I have written again to the Minister in Northern Ireland to urge her to address this matter as soon as possible, and I would appreciate it if the Under-Secretary here could raise it in any forthcoming discussions with her Northern Ireland counterpart.

An important point is that the affected people in Northern Ireland can stay in the current scheme as long as the English scheme remains unreformed, but once the new English administrator is in place—I hope it will not be Atos or Capita—the existing discretionary charities will close. That will leave my constituents and those of my hon. Friend the Member for Foyle (Mark Durkan), as well as other affected people in Northern Ireland, in great peril. We do not want that to happen. The Haemophilia Society has also raised this matter in its document.

I remind the Minister that the Irish Government took the courageous decision some years ago to accept liability for this tragedy, which has compromised the health and the immune systems of so many people, and to deliver a compensation scheme.

[Mark Durkan (Foyle) (SDLP)]

The House has been misinformed on this point a number of times in previous debates, and it is important to point out that the compensation scheme in the Irish Republic was established even before liability was acknowledged. The tribunal system and the compensation scheme were set up, and the subsequent acknowledgment of liability simply affected the quantum. The fact of compensation had already been established, and that is what is still missing in the UK.

[Ms Ritchie]

I thank my hon. Friend for his helpful intervention. He characterises the position in the Republic of Ireland, which illustrates clearly the acknowledgment that the needs of people came first, before all the other extraneous matters.

I welcome the fact that progress has been made, but there are still matters that the Government must address if they want to be responsible for the long overdue settlement that these people are entitled to and require. It is not clear what will be in place following 2020-21. People need time to plan and they should not have to worry that the scheme might deteriorate or be pulled out from under their feet. I am also concerned by the lack of clarity on support for dependants, bereaved partners and bereaved parents, both current and future.

I have spoken many times in the Chamber about constituents of mine who have been affected by contaminated blood, and they have given me permission to name them. One constituent I have known for most of my life, Brian Carberry, has to go to weekly hospital appointments. He also has associated health problems. Over a year ago, he was diagnosed with non-Hodgkin lymphoma. Thankfully, he is currently in remission.

Two other constituents are twins, Martin and Seamus Sloan, who live in Kilkeel. They are both haemophiliacs and both infected. Their lives have been turned upside down. They have difficulty keeping hold of interpersonal relationships, and their immune systems have been completely compromised. That means that they are exposed to many other types of illness, and they are therefore unable to work and to provide for their families.

The strain and challenges that the families of infected people face cannot be overlooked. It is a direct result of this tragic situation. There can never really be a remedy for those whose lives have been affected, but the Government can recognise their suffering and alleviate the financial strain that they experience as a result. The Government must also try to resolve what the right hon. Member for North East Bedfordshire described as the legacy of collective shame that goes back across many Governments, and to bring relief to the people affected. Sadly, some of those people have passed on.

Regular payments must be in place and discretionary grants must be available to all those infected and their families. Like my hon. Friend the Member for Kingston upon Hull North, who has been such a stout campaigner on the behalf of these individuals, I would also like some form of inquiry, but I do not want an inquiry to hold up whatever form of compensation will eventually become available. We need to find out the reasons and the causes and hold to account the people who did this to our constituents and the wider population. It must never happen again. The Government have made progress, but they must ensure a full, fair settlement that is allied to an inquiry, because that is what these people deserve, so vitally need and have long been owed. It is long overdue for those lives lost, compromised or damaged by bad health as a result of infected and contaminated blood products.

--- Later in debate ---

[Nicola Blackwood]

The issue of death certificates is one that we are very alive to. It is one that the Department is trying to address, and I hope that we will be consulting closely with the relevant groups to make sure we deal with it in as sympathetic a manner as possible.

[Ms Ritchie]

Could the Minister comment on the points I made about the inactivity of the Northern Ireland Executive? Would it be possible for further phone calls to be made to the Minister for Health in Northern Ireland to accelerate the process and to enable payments and a scheme to be made available?

[Nicola Blackwood]

If the hon. Lady will have a little patience, I have an entire section on the devolved nations coming up. Before then, however, I would like to move on and speak a little about the other sections of the scheme. As well as the one-off payment to bereaved partners and spouses, the Government’s response to the consultation makes it clear that partners and spouses will be able to continue to access discretionary schemes on a means-tested basis. However, that is not the end of the story. My officials will continue to work with a reference group of experts on the details of the policy for this new payment for the bereaved and on elements of the wider discretionary payment. As soon as the policy is confirmed, the Department will publish it and give guidance on who is eligible and how to access the payment as easily as possible.

I recognise that, as has been clear from this debate, some do not feel that the new payments that have been announced are sufficient. However, they are based on the consultation response, and a judgment was made to provide support to the widest group of people possible to recognise the pain and suffering of those who have been affected by this tragedy. There are never really any right answers when designing a support scheme in recognition of such awful circumstances. Difficult judgments have to be made in relation to prioritising support. We consulted on the proposals and used the responses gathered to announce reforms that, for the first time, provide annual payments to all infected individuals rather than waiting for more people to get sicker before they receive support.

The hon. Member for Kingston upon Hull North raised issues about other viruses. We have not expanded the scheme to include other viruses, including vCJD. In that case in particular, that is because there is already a vCJD compensation scheme that offers no-fault compensation. It was set up by the Government for vCJD patients and their families in recognition of their wholly exceptional situation. The scheme provides for payments to be made, in respect of 250 cases, from a trust fund of £67.5 million. Over £41 million has been paid out by the trust to date. There are currently no proposals to extend the infected blood system of ex gratia payments to include other viruses or infections that were contracted through routes other than NHS-supplied infected blood. This is based on the advice of the Advisory Committee on the Safety of Blood, Tissues and Organs. For example, hepatitis B was not involved in the schemes when they were set up because the blood donor hepatitis B screening test had been introduced in the 1970s. There are other reasons for not including hepatitis E that I am happy to write to the hon. Lady about in more detail should she wish me to do so.

We now arrive at the devolved nations section that I mentioned to the hon. Member for South Down (Ms Ritchie). Many colleagues have referred to the Scottish Government’s reforms. We are working closely with officials from Northern Ireland in keeping them up to date on our progress with implementation. These beneficiaries, as the hon. Lady said, will be eligible under the Northern Irish scheme to continue to receive support at their current levels. I am happy to ensure that my noble Friend Lord Prior is made aware of her concerns about the potential impact on Northern Irish victims.

The hon. Member for Linlithgow and East Falkirk (Martyn Day) rightly raised the importance of co-ordination between the devolved nations on the support schemes. Given the significance of the points that he raised, and some complexities about the co-ordination of business, it is important that I ask my noble Friend Lord Prior to contact him directly on those points so that these matters can be co-ordinated effectively. I can reassure the hon. Gentleman on one point: the £500 winter fuel payment is now automatically included in the payment that people in England are getting as part of the support scheme. That means that they do not have to apply for it, as was the case previously. I hope that he will accept that that is a degree of progress.

Many colleagues point to the Scottish scheme as a blueprint for what they would like to see introduced in England, but there are some differences, as the hon. Gentleman noted. In England, there are about 2,400 individuals with hepatitis C stage 1 who were not receiving any annual payment. We have introduced a new annual payment for all those individuals so that they can get support now rather than waiting for their health to deteriorate before they are eligible for it. The Scottish Government have made their own judgments. They have chosen to provide a lump sum payment, and there are currently no proposals for annual payments to the hepatitis C stage 1 group.

We have put in place other measures to avoid the sense that, as the hon. Member for Hammersmith (Andy Slaughter) suggested, this support could be grudging, or that, as the hon. Member for Kingston upon Hull North mentioned, people could feel as though they were being treated as beggars. We have specifically put in measures to avoid this. For example, as we announced in response to the public consultation, people should not feel as though they have to jump through hoops to prove that they are worthy of support. We have no intention of introducing individual health assessments to registrants of schemes as a means of making people feel as though they have to prove their eligibility. Another key element is a special categories mechanism, with appeal, for those with hepatitis C stage 1 who consider that the impact of their infection, or the treatment for it, is similar or greater than for those at stage 2, such that they could qualify for stage 2 annual payments. This is a particularly beneficial aspect of the scheme.

Members have raised the issue of those who could clear hepatitis C infection. They will remain entitled to compensation under the scheme. The shadow Minister is right that those who clear the virus during the acute phase are not included in the scheme, but that is because the body fights off the infection before the severe health impacts occur. That has been the judgment of the expert advisory group, which we have been pleased to listen to.

Oral Answers to Questions

Baroness Ritchie of Downpatrick Excerpts

Tuesday 5th July 2016 Commons Chamber

[Mr Jeremy Hunt]

I welcome my hon. Friend’s close interest in ensuring that this important agenda does not get swept aside. I can assure her that we have had many discussions inside Government about what to do. There is a strong commitment to take it forward as soon as possible, and I hope that she will get some good news on that front before too long.

[Ms Margaret Ritchie (South Down) (SDLP)]

Will the Minister responsible for public heath confirm when a statement on contaminated blood will be made to the House, and in particular on the response to the consultation that closed in April?

[Jane Ellison]

I am not in a position to be specific about when we can make a statement, but I can give the hon. Lady and other interested Members the absolute assurance that we continue to look closely at the issue. We have read every single response that we have received. I was at a well-attended all-party group meeting on 25 May and gave people a sense of the direction of travel of our analysis. I hope to keep the House updated.

Diabetes-related Complications

Baroness Ritchie of Downpatrick Excerpts

Tuesday 7th June 2016 Westminster Hall

[Paula Sherriff (Dewsbury) (Lab)]

I beg to move,

That this House has considered diabetes-related complications.

It is a pleasure to serve under your chairmanship, Mr Pritchard. I am particularly pleased to have secured a debate on this topic because of its profound importance to all those with diabetes, and because support for those with long-term conditions is vital to the future of the NHS.

There are 4 million people living with diabetes in the UK today, and it is estimated that more than half a million people are undiagnosed, living with the condition without being aware they have it. Since 1996, the number of people diagnosed with diabetes in the UK has more than doubled, from 1.4 million to almost 3.5 million. About 700 people a day are diagnosed with diabetes, which is the equivalent of one person every two minutes. The NHS spends about £10 billion on diabetes every single year, which equals around 10% of its budget. Critically, it is estimated that 80% of that cost is spent on complications that are largely avoidable through better care.

[Ms Margaret Ritchie (South Down) (SDLP)]

I congratulate the hon. Lady on securing this important debate. She referred to the fact that 80% of NHS spending on diabetes is on avoidable complications. Does she agree that a greater focus on early intervention is needed, to ensure that the budget, resources and staffing are better targeted?

[Paula Sherriff]

I thank the hon. Lady for her intervention, and I absolutely agree. As with so many other conditions, early intervention is crucial.

The total direct and indirect costs associated with diabetes in the UK are estimated at £23.7 billion. That is predicted to rise to £39.8 billion by 2035. Earlier this year, the Public Accounts Committee said that the cost of diabetes to the NHS would continue to rise.

Oral Answers to Questions

Baroness Ritchie of Downpatrick Excerpts

Tuesday 10th May 2016 Commons Chamber

[Ms Margaret Ritchie (South Down) (SDLP)]

Considering the importance and the central role of nurses in the medical profession and in helping people when they are ill, how long does the Minister expect it will take on average for a nurse working in the NHS to pay back the total debt that would be accrued under the Government’s proposed replacement for the bursary scheme?

[Ben Gummer]

It depends of course on the career progression of that particular nurse, but the repayment terms will be precisely those for students of other degrees. Newly qualified nurses will not pay any more than they do currently, and the exact rates at which they will pay back—9% above £21,000—are outlined carefully in the consultation document. I recommend that the hon. Lady looks at it and sees the benefits that will come from the reform that, were it to be adopted in Scotland, would provide an enormous benefit to the service north of the border.

Contaminated Blood

Baroness Ritchie of Downpatrick Excerpts

Tuesday 12th April 2016 Commons Chamber

[Ms Margaret Ritchie (South Down) (SDLP)]

I commend my hon. Friend the Member for Kingston upon Hull North (Diana Johnson) for bringing forward this debate, along with the co-signatories. I was pleased to be one of them.

Today’s debate is the latest in a number of discussions we have held in the Chamber and Westminster Hall on the support arrangements required for people infected with contaminated blood. I pay tribute to the many advocates throughout the UK on the vexatious subject of tainted blood and to the Haemophilia Society. The right hon. Member for North Norfolk (Norman Lamb) said there was striking unanimity across the Chamber that this was not a party political issue but one that impacted on the lives of many people, not only the direct victims but the families, spouses, partners and children who, in many instances, have become carers. It has forced many people into poverty and destitution, which should never have been the case.

There has been a renewed urgency to this debate, particularly since last July’s urgent question, and in that regard I would like to put on the record my thanks to and praise for the work of the all-party group on haemophilia and contaminated blood. However, I would not overstate that urgency, given that publication of the consultation has been repeatedly delayed since its announcement last July and the Prime Minister’s apology on 25 March last year. None the less, I welcome the long-awaited publication of the consultation. I do not necessarily agree with many of the contents, but it is one further step to a full and final settlement for the victims of this tragedy and their families.

Sadly, many have died from their viruses, and for others, every additional day they live is a bonus. This must be dealt with comprehensively once and for all. Let no one be in any doubt: there is no scope for delay. We have spoken at length in previous debates about the impact that the use of contaminated blood products imported back in the 1970s and 1980s has had on people’s lives. Lives have been devastated following the contraction of hepatitis C or HIV as a direct result of these contaminated products.

I have spoken before, in Westminster Hall, about one of my constituents, Brian Carberry, from my local town of Downpatrick. I grew up with him and his family. He and his brothers were born with haemophilia. He received blood transfusions in the 1970s and 1980s, and as a result, his health condition became particularly complicated and he ended up with hepatitis C. Only five or six months ago, he was diagnosed with a rare form of cancer for which he now receives an aggressive form of chemotherapy.

I have also met two other constituents, twin brothers, from South Down, Michael and Seamus Sloane, who have met many difficult health, financial and interpersonal relationship challenges as a result of their haemophilia combined with contaminated blood transfusions. Their lives have been turned upside down. In all our meetings, they asked for a full and final settlement for people like them. It struck me what amazing advocates they were: they took a very sunny approach, they saw a better day ahead. But that better day ahead can be achieved only if the Minister indicates unequivocally that there will be a full and final settlement for people like my constituents and the many others described in this debate.

[Mims Davies (Eastleigh) (Con)]

rose—

[Ms Ritchie]

I am sorry, but I cannot take any interventions because time is limited.

The health problems that thousands face as a result of this tragedy have been exacerbated by the distress and uncertainty around the support arrangements. Irrespective of how bad things have been, I would urge the Minister, having listened to the reasoned demands of Members of all parties, to state clearly that there will be a full and final settlement, that there will be proper transitional arrangements hereafter, and that people so affected will have the right and direct access to the medication required to help them live with their medical conditions, while the families affected by these problems will also be helped. The tragedy of this scandal must be ended and a curtain must be drawn on it.

[Jim Shannon (Strangford) (DUP)]

rose—

Dementia and Alzheimer’s Disease

Baroness Ritchie of Downpatrick Excerpts

Tuesday 12th April 2016 Westminster Hall

[Jim Shannon]

We have to encourage all medical advances.

The number of people living with the condition in the UK is revealed as more startling when we take into account the unsung heroes—the carers.

[Ms Margaret Ritchie (South Down) (SDLP)]

I congratulate the hon. Gentleman on obtaining this debate. He made an important point about the unsung heroes, the carers. Does he agree that often the people who provide the care in the home rely on outside visits, but those are short-term visits, which are not really the answer to support the carer or the person suffering from Alzheimer’s disease or dementia? More work on policy development and resources needs to be invested in by Government in the vital area of caring.

[Jim Shannon]

I thank the hon. Lady for a valuable intervention.

Carers UK estimates that, of the 6.5 million carers in the UK, 670,000 people care for friends or relatives with dementia. It is estimated that the NHS saves some £11.6 billion each year because of those unsung heroes; their contribution as volunteer carers is very valuable. Carers may end up providing more than 100 hours of care per week, and all too often the outside world is completely oblivious to their efforts—even those who know the carers might be oblivious, because they do not know what is happening. Anyone who has lived with someone with dementia or Alzheimer’s, or knows a person who does, knows the problems. People with dementia can often unknowingly become agitated, even violent, and night-time wandering and shouting can have a serious impact on carers’ sleep patterns, let alone sufferers’.

Oral Answers to Questions

Baroness Ritchie of Downpatrick Excerpts

Tuesday 9th February 2016 Commons Chamber

[Jane Ellison]

The challenge of being serious about prevention is one for the entire health and social care system. We acknowledge that, like many parts of government, public health grants have had to absorb some of the fiscal challenge. We are dealing with the problems we inherited at the beginning of the coalition Government. Despite that, local authorities will receive £16 billion in public health grants alone over the spending review period, but that is not the only way we invest in prevention. On my many visits, I have seen some of the great work being done to work with local authorities, and I am confident of the great things they can do with that money.

[Ms Margaret Ritchie (South Down) (SDLP)]

19. Given the report by the Crisp commission, released in the last few days, on mental health provision and treatments, can the Minister provide any assurance about the equitable treatment of physical and mental health to ensure an equal allocation of funds?

[Jane Ellison]

There is rightly a great deal of attention on this area—more tier 4 beds have been commissioned, for example—but I want to stress what is being done in my area of public health. Right at the heart of our new tobacco strategy, which we are beginning to work on, is a concern for the inequity facing people suffering from mental ill health in terms of smoking levels. I can reassure the hon. Lady that across the piece we are considering how we can do more for those who suffer with mental health problems.

Cancer Drugs

Baroness Ritchie of Downpatrick Excerpts

Tuesday 19th January 2016 Westminster Hall

[Ms Margaret Ritchie (South Down) (SDLP)]

It is a pleasure to serve under your chairmanship today, Mr Streeter. I join other hon. Members in congratulating the hon. Member for Mid Derbyshire (Pauline Latham) on securing a debate on a vital issue at such an important time.

No one is unaffected by cancer, and I am sure every Member present will know of a constituent who has had their cancer treatment improved by access to specialist drugs. However, particularly in light of recent decisions, I am sure that we all know stories of constituents and family members who have not had access to the drugs they need, and who have, sadly, suffered as a result. That is why we are here today to discuss this important subject.

There are many who believe that, wherever they live and whatever their age, cancer patients—and there are many different types of cancers—should be able to access clinically effective, evidence-based treatments in a fair, consistent, timely and transparent way from the point of diagnosis. It is therefore deeply regrettable that, given that the Cancer Drugs Fund was already scheduled to come to a close this year, additional funding could not be found to provide the 16 medicines that were delisted last September, at least until a more effective commissioning system for cancer drugs was put in place.

Of course, difficult decisions will always have to be made about the allocation of finite resources, but this has been a particularly hard blow. It is difficult to describe how it must feel for someone to be diagnosed with cancer and then told, as the hon. Member for Mid Derbyshire described, that the life-extending drug they need was funded yesterday but will not be funded today. I take on board the issues about pancreatic cancer, which is one of the severest forms. In fact there are many forms within that spectrum. I note particularly that it was not necessarily resources that were the issue: it was to do with clinical commissioning and clinical effectiveness, and drug trials. Many people who are desperately in need of help and access to drugs, and who feel very unwell, are at the mercy of wider decisions that are part of the NICE agenda and the wider Government agenda.

We may not find ourselves in that position deliberately. However, the Rare Cancers Foundation estimates that it will have been the experience for thousands of patients across Britain and Northern Ireland, and I feel that that suffering should be put on record in our debate today. It is, at the very least, a dire indication of why commissioning reform is needed so badly. It is not too late for the Government to provide the additional support needed to give relief to the patients who are being denied access to life-extending drugs, but, given that such an announcement is unlikely, I shall turn my attention to the ways in which a new system can be designed, to ensure that the same mistake will not happen again.

The funding given for cancer drugs, whether through a Cancer Drugs Fund or a special medicines fund, must be sustainable and well co-ordinated, and should work alongside comprehensive support for treatment and wider health infrastructure. On that basis, the review of how the Cancer Drugs Fund works with NICE should also consider how specialist drug support can be co-ordinated with more localised radiotherapy, chemotherapy and surgery options. Integrating the Cancer Drugs Fund with the NICE system creates an opportunity to address broader issues within the NICE commissioning process, offering the potential remedy for long-standing issues such as access to necessary specialist drugs.

I will mention by way of background, given that I represent a Northern Ireland constituency, a difficulty that we sometimes have. Many specialist drugs are trialled at Queen’s University Belfast, but because of the commissioning process they are not available to our constituents in Northern Ireland. They have not yet been commissioned, or they are commissioned for England and Wales but not necessarily for Northern Ireland. Therefore I urge the UK Ministers responsible for the issue to engage fully with their counterparts in the devolved Administrations, including Northern Ireland, to make sure that the issue is considered fully, and to turn the potential danger into an opportunity to improve both the NHS and access to specialist drugs. I hope that today the Minister, whom I am glad to see here, will provide us with some form of resolution, and a panacea that will bring relief to many people throughout the UK who are suffering from any of a wide variety of cancers, and particularly sufferers of rare cancers.

Victims of Contaminated Blood: Support

Baroness Ritchie of Downpatrick Excerpts

Wednesday 16th December 2015 Commons Chamber

[Jane Ellison]

We aim to consult, and we want to make sure that the final shape of the reformed scheme is informed by that consultation. As I have said, we look to start transitioning to a reformed scheme in the spring. At this stage, however, it is a little difficult to be more precise. We are working hard to ensure that aspects of the transition are being planned and thought about, and this will be informed by the final outcome of the consultation.

[Ms Margaret Ritchie (South Down) (SDLP)]

The Minister wrote to me on 6 November and stated:

“The shape and structure of a new scheme will be decided following the consultation process that will begin by the end of this year as previously committed”—

as it had been committed in an Adjournment debate on 9 September. I am deeply disappointed today that neither that scheme nor that consultation is in place. My constituent, Brian Carberry from Downpatrick in South Down, whom my Adjournment debate was about, has told me in the last few weeks that he now has a form of cancer, with four tumours identified, as a result of the connection with contaminated blood. Will the Minister give me and the House an undertaking today that a full and final settlement will be in place before the end of this financial year.

[Jane Ellison]

I have already made my comments about the timing of the consultation, and I cannot add to what I said in response to the hon. Member for Kingston upon Hull North (Diana Johnson), who put the urgent question. I have often spoken to the hon. Member for South Down (Ms Ritchie) about this and I responded to her Adjournment debate. I think that the language she uses is applicable to circumstances before this exchange. I have already explained the issue of compensation and the principles that we shall try to apply to the reformed scheme. I cannot really add to the comments I made in my response to the hon. Member for Kingston upon Hull North.

Specialist Neuromuscular Care and Treatments

Baroness Ritchie of Downpatrick Excerpts

Tuesday 15th December 2015 Westminster Hall

[Ms Margaret Ritchie (South Down) (SDLP)]

It is a pleasure to serve under your chairmanship, Mr Brady. I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing this debate on a vital issue that affects many young people throughout the UK.

As the right hon. Lady said, neuromuscular diseases come in many different forms. In fact, there are about 60 different types of muscular dystrophy and related neuromuscular conditions, which makes it difficult for the NHS to provide clear-cut statistics on the number of people affected by such diseases. However, research undertaken by Muscular Dystrophy UK suggests that out of every 1 million of the UK’s population, approximately 1,000 children and adults are affected by such muscle-wasting conditions. On that basis, we can estimate that some 70,000 of our constituents, of whom approximately 2,000 live in Northern Ireland, are affected by those conditions.

Another way of totalling the scale of the issue is to look at the admission rates of those with neuromuscular diseases to accident and emergency departments. Muscular Dystrophy UK undertook work on that issue and found that in Northern Ireland in 2011, 787 people with a neuromuscular condition were admitted to A&E departments requiring emergency treatment, at an estimated cost of £2.2 million. Those figures are broadly in line with the GB average. There were 28,000 emergency admissions in the UK, at a cost of £81 million. Relying on the emergency services to fill the gaps in treatment for people with such conditions robs people of their independence and costs the NHS much more than a well-designed system that helps people to manage their conditions and avoids emergencies.

I am sure everyone in this Chamber is in agreement on this issue and wants the best possible treatment and care to be provided to people living with the effects of this cruel disease. Unfortunately, we are not there yet. There is still much work to do—in particular, on an issue that the right hon. Lady already referred to: Duchenne muscular dystrophy and the need for Translarna to be commissioned by NICE and approved by its guidelines. It is important that that happens, because Translarna is already in use in France, Germany, Italy and Spain. Families in those countries can use it, but families here are waiting for it.

[Will Quince (Colchester) (Con)]

One of my constituents has two sons with Duchenne. Does the hon. Lady agree that it is deeply regrettable that they are considering moving to France and commuting back to work so that their sons have the vital access to those drugs?

[Ms Ritchie]

I thank the hon. Gentleman for his intervention. I agree. His point illustrates that we urgently need a decision from the Minister. I hope the Minister provides us with some welcome information on that issue. It is deeply regrettable that families will go through Christmas not knowing for sure whether the drug will be approved. In the new year, NICE’s decision must not be delayed further. We must end the difficult wait of those families and children.

In Northern Ireland, there has been a commitment for more adult neuromuscular nurse specialists and adult neuromuscular consultants. I share the hope that, when combined with increased care adviser support, the new specialists will begin to improve our currently overstretched services, although there are still valid concerns about how that can be carried out effectively in the context of broader reorganisation and funding scarcity. If we are to achieve the standard of care we all want, much more must be done to co-ordinate better and join up services to ensure patients with muscle-wasting conditions get the help they need efficiently and effectively.

Before I conclude, I want to mention one of my constituents, a lady called Michaela Hollywood, who is wheelchair-bound and was born with spinal muscular atrophy. She was born without ears and is permanently in a wheelchair. She is now 25 years old. She received a Points of Light award, and on Thursday last week she was with the Prime Minister when the Christmas tree lights were turned on in Downing Street. She is on the BBC’s list of the 100 most inspirational women. She received her undergraduate and master’s degrees from Ulster University, and she hopes to go back to do her PhD. She is a lady of immense capacity. She is a campaigner for young people like her with muscle-wasting conditions and, although she spends every day of her life in a wheelchair, she very much enjoys every one of those days because she is a constant campaigner with enormous zeal for life.

Michaela gave evidence to the all-party group on muscular dystrophy in the Northern Ireland Assembly for its report on specialist neuromuscular care. What she said is most important, because it highlights the need for joined-up Government thinking, whether here at Westminster and in the Department for Health or in the devolved Administrations. She said:

“There’s physiotherapy and hydrotherapy, trying just to cover everything. I do receive physiotherapy but it’s a tricky issue because when you’re under 18, with a neuromuscular condition, you have respiratory physio in the community; when you’re over 18 and in the community, with a neuromuscular condition, you’re with disability physios, even though you’re deemed as having a respiratory problem. So that I think is something that is a prime example of the disjointed care that we’re receiving. If we have one specialist multidisciplinary team…that would make things so much easier. If we had a physio that concentrated on neuromuscular diseases but also had experience within respiratory areas, that would make things easier. Also, if we had a cardiologist who pretty much had a good knowledge all round, that would help too.”

Michaela’s words make the case for a joined-up service better than any of us could, so I will end by simply reiterating her appeal for specialist multidisciplinary teams for the treatment of muscular dystrophy to be established. I call on NICE to make its decision on Translarna with the utmost urgency. I hope the Minister will give us some favourable answers to alleviate the distress that is felt by many people throughout the UK.