Contaminated Blood

Jessica Morden Excerpts

Thursday 15th January 2015 Commons Chamber

[Jessica Morden (Newport East) (Lab)]

I went to the launch of the report by the all-party group yesterday. On behalf of my constituents who are affected, may I say a very big thank you to hon. Members and former hon. Members who have pursued this issue over the years, in particular my hon. Friend the Member for Kingston upon Hull North (Diana Johnson) and the hon. Member for Colne Valley (Jason McCartney)? It is hard to believe that, after all these years, this is the first survey of those affected by this scandalous tragedy. I support wholeheartedly the efforts of the right hon. Member for North East Bedfordshire (Alistair Burt) to secure this debate and all the work he has done. Even though the Penrose report has been delayed, we cannot delay talking about this matter—it has taken far too long already.

I support the recommendations in the report that deal with the experiences that constituents such as Lynn Ashcroft have had. I spoke to her last night on the phone. She had been reading the report and described it as “very comprehensive and moving”. Lynn’s late husband, Bill Dumbelton, was a haemophiliac. Bill was one of the first haemophiliacs to treat himself at home with cryoprecipitate. He contracted HIV and hepatitis C from the blood he was given. He lost his job with BT in the 1980s after he told the occupational health department about his HIV status.

Sadly, Bill died at the age of 49 and Lynn was widowed at 35. Bill had no life cover. As Lynn explained, because of his haemophilia no one would insure “people like him”. As well as having to come to terms with the loss of her beloved husband, Lynn was left with the mortgage and other financial challenges. Lynn did receive money through the Skipton Fund, although she feels she had to jump through many hoops to get it. It took her two years to get to stage one, during which vital medical records were lost. In her words, the Skipton Fund process was “brutal”. Several appeals in three to four monthly intervals over two years made her grieve all over again. It took a huge toll on her personally. As Lynn says, the Government cannot bring back the dead or restore their health, but they can award a financial package that will ensure survivors and their families are financially secure for life. In her words, she wants to see no more charities, no more funds and no more begging. Lynn has been helping other widows to get through the overly complicated system. I hope that, as a consequence of the report, the Government will act on its recommendations.

Bill died in the same year as Colin Smith. Colin’s parents, Janet and Colin, live in my constituency. Colin’s tragic story is on the “Tainted Blood” website, as is Bill’s, and the story of his extremely short life illustrates why we need a public apology, which is long overdue. Colin went into hospital at eight months of age for a minor ear condition. As a haemophiliac, he received factor VIII, which the family learnt following a freedom of information request came from a batch from a prison in Arkansas. He spent his short life fighting illness. He died, aged seven, of AIDS and hepatitis C. The family did not know he had hepatitis C until three years after his death. That was kept secret, as so much has been kept hidden. It was a real battle to discover that.

On behalf of the family, may I say they are angry that there was never a public inquiry and that the full findings of Archer were not accepted? They passionately believe that more should be done to help those still living with the consequences of what Lord Winston described as the worst treatment disaster in the NHS. They have taken comfort in the friends they have made through the “Tainted Blood” campaign, but say they have not felt strong enough to attend the constant funerals, as their friends pass away. The Smith family and others need and deserve closure.

Two days ago, it was the 25th anniversary since Colin’s death. This was the tribute on the “Tainted Blood” Facebook page:

“Today marks the 25th anniversary of the death of Colin Smith. He was a haemophiliac, but despite that lived a normal fun-filled life, along with his two brothers and his mum and dad. Then, in the middle of the AIDS crisis, he was given a non-emergency operation, during which he was given a batch of blood product. Colin died of AIDS, aged seven, in Janet’s arms, weighing around the same as a baby. His family have never recovered from it, and never will.

Please, as you read tomorrow’s APPG report and as you watch the debate…remember Colin and all of those who, like him can’t be there with us. Please remember all of those who might not see the end of this year…Thousands of people, like Colin, simply didn’t make it this far. He never had the chance to join the cubs, play football for his school, have a girlfriend, go travelling or get married…Instead, his short life was filled with hospitals, doctors and illness. He was just a little boy, but a very special one who we, at TB, always keep in mind as we campaign.”

While long overdue, it is time for a public apology and a final settlement. Anything less will just continue to hurt the innocent victims and their families who, through absolutely no fault of their own, have had their lives torn apart by this national scandal.

--- Later in debate ---

[Huw Irranca-Davies (Ogmore) (Lab)]

I pay tribute to the right hon. Member for North East Bedfordshire (Alistair Burt) and others who have worked on this issue for some time, as well as those whose names are on the Order Paper today, those who contributed to the report of the all-party parliamentary group and all hon. Members who have spoken today.

I will not name any names in my speech—my constituents have asked me not to do so because of their continuing fear of stigmatisation. I shall use their words, however, because, frankly, I have nothing more powerful to say.

[Jessica Morden]

I thank my hon. Friend for giving way so early in his speech. He, like me, is the Member for a Welsh constituency. Does he agree that it is important that as we move forward the Government work closely with the Welsh Government, particularly on things such as treatments, so that there is help for those Welsh constituents now that health is devolved?

[Huw Irranca-Davies]

I agree very much with my hon. Friend. We need a UK solution because this is a UK problem, so work must be done in concert with the devolved Administrations and Governments.

My constituent says that in 1982:

“We were called into consultant’s office, at the…Hospital…My future wife was pregnant and we were strongly advised to have a termination. However, he was not specific about reasons why, other than the possibility of our child either having or carrying haemophilia, so we refused.

1983—Our son was born and they wanted to take a blood test from him. It was after this they told us of my…HIV infection, at this early stage they had no idea what it entailed. We were advised not to mention to other patients at the hospital and to refrain from sexual intercourse until they knew more. Thankfully our son did not have the virus. Feeling uncertain about the future, it was awful to be told we had to keep this to ourselves. At this time it was very much publicised in the media and friends of ours, who knew of my Haemophilia began questioning us on whether or not I had been affected. Suffice to say I felt I was on borrowed time and on my own admittance, went off the rails and neglected my son and new wife.

1985—My wife fell pregnant again and convinced I was going to die sometime soon, the fear and uncertainty about the future made us feel we had no option but to have a termination.”

He goes on to say that a support group was set up and:

“We began attending meetings with the group and felt better for the support but sadly the participants began dying at an alarming rate and it just made the situation worse.

1991—My brother, who also had Haemophilia and HIV passed away. Prior to this we had undergone clinical trials at the hospital and because we were brothers, he was given the placebo. The guilt I felt because I was taking the actual product and had survived was indescribable. The following year my second brother was tragically killed.

1993—In short I had given up, I knew I was going to die and felt I could fight no longer. I ended up in hospital with PCP pneumonia and my wife was told I had a matter of weeks. Even though I had given up on myself thankfully my family and the hospital staff hadn’t…and I eventually pulled through.”

He goes on to describe their three-and-a-half-year fight from 1995 to become the first couple with HIV status in the UK to adopt despite being told no, no and no again. He continues:

“2001—We were asked to consider adopting two more children”,

in addition to the one they had adopted during that period,

“a boy and a girl aged five and seven. We agreed and my wife finally had the family she had been craving. It was just after this, I was told I had also contracted Hepatitis C and possibly vCJD. Obviously we were devastated and all the old uncertainties we had pushed to the back of our minds pushed forward with force. However, all was not lost I was assured a treatment was available.

2002—Late in the year, I began treatment for Hepatitis C. We had been warned prior to this, I wasn’t going to be easy to live with but looking back now I feel this was an understatement. The two children we had living with us, had severe psychological problems and their behaviour just served to exacerbate the situation and subsequently the placement broke down.

2003—The two children went back into care and I found myself unable to cope with my grieving wife and my two existing children. I wasn’t in a very good place at this time and my wife and I came very close to separation. It was only because we had been together since we were sixteen and married at seventeen, we worked to stay together. The treatment reacted with my HIV drugs and I ended up in High Dependency with Pancreatitis. Following this, my wife had to sell her business as I was ill and unable to cope at home without significant help.”

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.