Hepatitis C (Haemophiliacs)

Jessica Morden Excerpts

Tuesday 29th October 2013 Westminster Hall

[Mr Andy Slaughter (Hammersmith) (Lab)]

Thank you, Mr Dobbin, for calling me to speak. It is a pleasure to be here in Westminster Hall under your chairmanship.

I, too, thank my right hon. Friend the Member for Wythenshawe and Sale East (Paul Goggins) for securing this debate and for his speech. I welcome the Minister, the hon. Member for Battersea (Jane Ellison), to her post. This is the second Westminster Hall debate in two weeks that I have taken part in and she has responded to, so she has a very full in-tray. Nevertheless, I urge her to study her brief on this issue and, as my hon. Friend the Member for Kingston upon Hull North (Diana Johnson) said, to meet the victims of the contaminated blood scandal and their MPs.

Most importantly, the Minister should come up with a proposal for resolving the remaining injustices on this issue. I am sure that she will; she has a reputation for being thoughtful and open-minded on such subjects, but she will have heard from right hon. and hon. Members today that this problem becomes more pressing with every year that passes.

I am afraid that, as my hon. Friend the Member for Kingston upon Hull North said, the cause was somewhat set back by the meeting that the previous Minister, the hon. Member for Broxtowe (Anna Soubry), had with the all-party group on haemophilia and contaminated blood earlier this year. It is no exaggeration to say that it is the worst meeting I can remember in eight years of going to such meetings. The previous Minister was completely unprepared in her brief; she shared the all-party group’s concerns but had no solutions whatever to address them. That meeting was attended by 20 MPs and peers, with 20 others giving their apologies. The number of Members who take part in the frequent debates on this issue shows the level of concern among all parties about it.

This is a great injustice, which successive Governments have failed to address; in so far as they have attempted to address it, they have done so in a miserly and bureaucratic way. An inquiry has been refused, and responsibility has been refused, by Government, and those things are to be deplored.

In the very few minutes that I have to speak, I wish to introduce one additional topic. My right hon. Friend the Member for Wythenshawe and Sale East has rightly framed this debate in terms of contaminated blood and hepatitis C; understandably, the good briefing from the Haemophilia Society has done the same. However, the briefing also refers to co-infection with HIV.

When the Minister looks at these issues, I urge her not to forget those who have been infected, or co-infected, with HIV as a consequence of contaminated blood products. Of the 1,252 people who have been infected with HIV in this way, 932 have died so far. Among the 322 of those people who are still living, one of them is my constituent, Andrew March, who was contaminated at the age of nine. He is now 39, so his entire life has effectively been ruined. He has been a staunch campaigner. He was the applicant in the judicial review proceedings on this matter, and yet after 30 years he is still waiting for any proper redress.

I feel strongly that this issue is the responsibility of Government, and the hon. Member for North Devon (Sir Nick Harvey) was also clear on that. To some extent, the admission of liability is not the central question. The previous Minister wrongly said that the reason why proper payments were made in the Republic of Ireland was that there was an admission of liability. In fact, payments were being made there before the admission was made, as the hon. Member for Foyle (Mark Durkan) pointed out very clearly, having a clear knowledge of what happened; the hon. Gentleman is not here today, but he has done a lot of work on this issue.

We do not need to get tied up in those matters of liability, but personally I would like an admission of responsibility from the Government, because, for some of the reasons that have already been given, much more could have been done. In the 1970s and 1980s, there was a delay because of a failure to see what medical knowledge was showing about contamination. Even when that contamination was known, there was a failure to treat products so that they were no longer harmful.

My final point is about funding. Reference has already been made to the Skipton Fund in relation to hepatitis C, but there are similar problems with the Macfarlane Trust. I have been told that it is effectively falling apart; that the review of its probity, of its success, has been ignored; that there is very poor communication between it and sufferers; and that it is underfunded.

The result of all that is that people die. People die because they are not getting sufficient treatment or sufficient medication that they need to deal with their conditions. HIV is a treatable condition, but for those who have serious health problems it can still be fatal and that issue is not being addressed. In the short term, I ask the Minister to look at both the lump sum and ongoing support payments, but in the longer term what we need is a full and final settlement.

I suspect that many Ministers, particularly junior Ministers, wonder how much difference they have made on a lot of issues when they finally leave their posts. However, I also suspect that this is one discrete area, with a defined number of victims, where the Minister could make a difference if she chooses to put her mind to it, in a way that some of her predecessors have not.

[Jessica Morden (Newport East) (Lab)]

A Welsh member of the all-party group on haemophilia and contaminated blood recently told me that every meeting and correspondence that it has with the Government ends with the words, “The Minister will look into this.” Does my hon. Friend agree that a promise really to get to grips with this issue now would be incredibly important, not least for Colin—aged seven, from Newport—who died in my constituency from having contaminated blood? We must also remember the very young victims whom we are campaigning for.

[Mr Slaughter]

I am grateful to my hon. Friend. I know that those views are shared by many Members on both sides of the House.

We are probably not looking for answers today, although we will listen to what the Minister has to say. She has heard clearly that we can do more than just look into the issue: we can achieve results for the remaining victims of these terrible diseases and their families.

Oral Answers to Questions

Jessica Morden Excerpts

Tuesday 22nd October 2013 Commons Chamber

[Norman Lamb]

I agree that we must learn the lessons. NHS England is responsible for conducting the new review into congenital heart disease services, and it is committed to conducting a review that is robust, transparent and inclusive, in the interests of delivering high-quality, sustainable services for all patients.

[Jessica Morden (Newport East) (Lab)]

T9. When the minimum wage increased recently, a working carer on 15 hours a week contacted me because she found herself to be 85p over the threshold for carers allowance, meaning that she would lose £259 a month. What work is the Minister doing with other Departments to ensure that carers are not penalised for caring and working?

[Norman Lamb]

First, we should applaud the work of the many carers around the country who are doing absolutely invaluable work. It is obviously important to ensure that the policies of one Department do not have an adverse impact on the work of another, and I will be happy to look into the case that the hon. Lady has raised.

Oral Answers to Questions

Jessica Morden Excerpts

Tuesday 21st February 2012 Commons Chamber

[Mr Burns]

I have to say that, unfortunately, notwithstanding what the hon. Gentleman thought was a rather clever way of describing my answers, his figures are factually incorrect. As Jim Callaghan once said, an inaccuracy can be halfway round the world before truth gets its boots on. The facts are these: there are 896—[Interruption.] If the hon. Gentleman would listen to the answer he asked for, he might learn something and stop making misrepresentations. There are 86 more midwives working in the NHS—[Hon. Members: “86?”]—896, which is an increase of 4%. There are 4,175 more doctors working in the NHS: an increase of 4%. There are 15,104 fewer administrators working in the NHS—a decrease of 7.4%—and 5,833 fewer managers. There are more doctors. There are more midwives. There are fewer administrators.

[Jessica Morden (Newport East) (Lab)]

3. What recent assessment he has made of the future of private health care.

[Teresa Pearce (Erith and Thamesmead) (Lab)]

6. What assessment he has made of the future of private health care.

[The Minister of State, Department of Health (Mr Simon Burns)]

The Department has made no assessment of the future of private health care. This is not the role of the Department of Health. The private sector has always provided services to the NHS and the Department monitors trends where it does so—for example, the number of NHS patients choosing a private provider under patient choice.

[Jessica Morden]

Given that the Prime Minister said there would be no top-down reorganisation of the NHS, the coalition agreement ruled it out and nobody voted for it, what exactly is the Secretary of State’s mandate for turning the NHS into a “fantastic business”, as the Prime Minister has said?

[Mr Burns]

I am extremely sorry if the hon. Lady really believes the mantra that she has just spewed out. If she had read pages 45 and 46 of our manifesto, she would have seen that it says that we would introduce clinical commissioning groups, take away political micro-management from Whitehall, free up the NHS and cut bureaucracy, as we are doing, which will save £4.5 billion to reinvest in the health service. Our coalition colleagues, the Liberal Democrats, had in their manifesto the abolition of SHAs. So I have to tell the hon. Lady that she is wrong. The test of what is going on and what is a success is the fact that if one meets GPs around the country, they support commissioning for their patients.

Organ Donation

Jessica Morden Excerpts

Wednesday 30th November 2011 Westminster Hall

[Glyn Davies]

I am hoping to come to this issue if I have time at the end of my speech. It is a crucial issue. I value the help that the British Medical Association has given me over the years. However, the Parliamentary brief from the BMA, which I referred to before, shocked me a bit; so I have gone to some trouble to understand its position. The BMA agrees with the move to presumed consent, and has done for many years. The position of the BMA is of great interest. It has been a vocal supporter of presumed consent since it adopted the policy in 1998, long before the report of the organ donation taskforce, which was a comprehensive study into the issue.

The BMA’s current position was overwhelmingly endorsed a few months ago at its annual representatives meeting, a very important meeting which was held in Cardiff and attended by hundreds of doctors representing regional groups throughout the United Kingdom and some special interest groups. Many dozens of motions were discussed over three days and votes are taken. A vote of 51% of those in the hall makes what is being discussed policy for the BMA. It seems scarcely credible that an important organisation can make policy on a complex issue in this way—as a sort of public speaking competition, rather than on the basis of detailed research. I do not accept that the BMA’s position on presumed consent can be treated seriously until it reforms the way it makes policy on complex issues. Given the influence of the BMA on public opinion, and that patients’ lives are at stake, there is a powerful moral obligation for it to undertake substantial research into this position before it continues to carry forward an issue that in my view damages the cause that it purportedly supports.

What is the way forward for patients who are at the heart of the debate? I want to come to the positive way forward. We know that the rate of organ donation is influenced by three crucial factors. The first is the number of potential donors. With rare exceptions, potential donors are comatose patients on life support machines in intensive care units. Inevitably, the level of intensive care provision is a crucial aspect of organ donation, and it is relatively poor in the United Kingdom.

That is one factor. Identification of all potential donors is another. Every patient who is a potential donor should be given the opportunity to become a donor, by early identification and discussion with his or her family. The Spanish have an extensive system of transplant co-ordinators, involving mainly part-time intensive care physicians. There is a lesson there for the UK.

Consent from the patient’s family is also key. This is influenced by background knowledge of transplantation and organ donation; the professionalism of timing, as to when we approach the family; trust in the medical profession and knowledge of their loved one’s wishes. Spain has a national training programme for its co-ordinators and a 24-hour information helpline open to the press and public, and places a high priority on public relations.

Consent cannot be legislated for. In 1990, the refusal rates in the UK and in Spain were the same, at about 40%. Over the last 20 years, the refusal rate in the UK has stayed roughly the same. In Spain, it has fallen gradually to the current level of 15%. There is a dramatic difference in what has happened in Spain, as a result of the systems outside presumed consent. That is the example that we should be following.

The second report of the organ donation taskforce recommended improvement in transplant co-ordination, which is being implemented. This is where the numbers I referred to earlier become apparent: the huge 25% rise in the UK and the 60% rise in Wales. It is a fantastic achievement. This is the approach we should be taking forward, which leads me to the final part of my speech this morning.

[Jessica Morden (Newport East) (Lab)]

Does the hon. Gentleman agree that there is a particular problem with organ donation in black and minority ethnic communities? What does he think we ought to do, if we are not aiming for a soft opt-out, to raise the profile of organ donation to tackle health inequalities in these communities?

[Glyn Davies]

The figures that I have seen show that the refusal rate in those communities is much higher in Britain. The rate of allowing organs to be donated by the next of kin is actually reducing among the non-BME population in Britain. So there is a lot of work. I do not know the answer to that. I do not want to make suggestions that I have not researched. I am trying to stick to the research, and I have not done research into that, although it is clearly an issue. It was a specific part of a debate here about two months ago and it is an issue we must tackle.

Finally, those of us who disagree with the proposals being put forward by the Welsh Government and advocated by my friends at Kidney Wales Foundation and the BMA have a responsibility to engage seriously with what is a genuine attempt to increase the availability of organs for transplant. It is a worthy objective. It is accompanied by a commitment to invest considerable sums of public money to achieve it. It has led to a lot of debate already, particularly in Wales, to this debate today, and will lead to much more. Many hon. Members are interested in the debate. If Wales and the Welsh Government seek to introduce the legislation, there will be huge debate across the UK. The debate itself is hugely helpful.

The final point I want to make this morning is that we should build on what is so obviously working. There is currently a national transplant week and a national donor day. However, these do not impinge as much on the national consciousness as we would like them to in the UK. I admit that I did not know that they occurred. If part of the extensive resources which would be used to implement the presumed consent legislation were to be used to create a national donor and transplantation day in Wales, what a difference that could make. It could have real impact. The resources could be used to celebrate the donors and their families of the preceding year on television, radio and the newspapers. The success stories of the recipients of new organs who are living a full life would be inspirational as examples and would help discussion about this issue, so that next of kin would know what their families’ wishes were.