Stem Cell Transplants

Debate between Jim Shannon and Mark Tami

Tuesday 24th January 2017 Commons Chamber

[Mark Tami]

I totally agree with the hon. Lady. We are talking about a very small number of people but, for them, it is their only chance after they relapse.

Despite everything we know, NHS England confirmed in December 2016 that it would not routinely fund second stem cell transplants. In effect, it decided that these people’s lives were not worth the money.

One of those people is Sasha Jones, a 34-year-old mother of two from Greenwich, who, in March 2015, was given the devastating news that she had acute myeloid leukaemia, a type of blood cancer. Over the next few months, she had rounds of chemotherapy and her first stem cell transplant. It was not without its difficulties, but by the beginning of October 2015, she was well enough to go home to her husband, Lloyd, and their two young children, aged just 13 and eight at the time. In August 2016, she was told that the blood cancer had come back, but by this time NHS England had decided that it would not routinely commission second transplants for patients in Sasha’s situation, despite such treatment being recommended by her doctor.

Doctors tried to get Sasha a second transplant by going through the individual funding request route, which allows NHS England to fund treatment for patients on an individual basis if they are deemed to be an exceptional case, but what is an exceptional case, how is that decided and, importantly, how long does it take to be considered? It has to be done at a time when the family and patient are dealing with the devastating news that their illness has not been cured but has come back, so they have to cope with that while also going through this process.

Sasha’s request was turned down and she has effectively been left with no alternative treatment. She now has two choices: find the money to pay for the second transplant herself; or accept that she might have only months to live and that her two young children could be left to grow up without their mother. I think it is fair to say that Sasha and her friends and family are desperate. A petition that they started to call for a reversal of NHS England’s decision not to fund second stem cell transplants now has more than 165,000 signatures, while a fund that was set up to raise the money that Sasha would need to pay for a second transplant currently stands at £90,000, but that is still not enough. Can hon. Members imagine the enormous pressure on Sasha and her family? In Sasha’s own words, she has been “condemned to death”. She says:

“In having been denied access to a second stem cell transplant, it has been decided that ‘I’m not worthy of a second chance a life; my children do not need a mother, my husband will become a widower’.”

It is a scandal that someone like Sasha should find herself in this situation—denied life-saving treatment that other patients have had in the past because NHS England says it is neither affordable nor justifiable.

[Jim Shannon (Strangford) (DUP)]

I apologise for not being here on the dot for the start of the debate. The hon. Gentleman is outlining the case for second transplants. Does he agree with the analysis from Anthony Nolan that shows that the cost of caring for someone who is refused a transplant is upwards of £130,000, while a transplant would cost only £120,000 and might save a life and prevent devastation being caused to a family? Does he agree that there is a financial as well as a moral incentive?

[Mark Tami]

Yes, I do. This is to do with how we assess the cost of treatment. I fully accept that the up-front cost of the transplant is a lot of money, but if that works the longer-term cost is not so great. However, we seem willing and able to fund drugs that might not cure people or extend their lives by very much, although the cost of them, when added up, might be more than the transplant. It is not right that we are saying to these people, “No, we’re not going to fund a second transplant”.

Sasha’s case is not unique, and there will be many more like hers if we do not change our position. Will the Minister please respond directly regarding Sasha’s case and those of others in the same situation? In the months and years ahead, there will be other people in this situation, and their voices need to be heard.

Fixed Odds Betting Terminals

Debate between Jim Shannon and Mark Tami

Tuesday 26th April 2016 Westminster Hall

[Jim Shannon]

As always, I thank the hon. Lady for her intervention—she is an hon. Friend, too. She speaks with heart and compassion, and she speaks for me as much as everyone else here.

Our Prime Minister told Parliament more than 12 months ago that FOBTs are a serious issue, and that he would act as soon as there was more evidence. Since then, two tragic cases of suicide have been linked to the machines, and there are numerous reports of the terrible impact they are having on the most vulnerable, but the Government are yet to act. The Minister is here to respond to the debate, and we look forward to hearing the ideas that he will put forward in response to what we have to say. There is no place for £100-a-spin games on the high street in bookmakers that have little or no supervision. There is a simple answer to protect the vulnerable, as the hon. Lady said, and that is to reduce the stake.

[Mark Tami (Alyn and Deeside) (Lab)]

While a lot of us have worries about what is going on in betting shops, does the hon. Gentleman agree that we do not know enough about the people who gamble at home on their phones and on the internet? There is no control over that at all, and they are being equally affected.

[Jim Shannon]

The hon. Gentleman is absolutely right. We have many concerns. Today’s debate is fixed primarily on the fixed odds betting terminals, but I accept that control is needed elsewhere.

The lack of regulation of FOBTs has meant that they have clustered in areas of high social deprivation. They can prey on the young and vulnerable. There is strong evidence that the high stakes on FOBTs in the low-supervision environment of a bookmaker have led to increased problem gambling. Recent Responsible Gambling Trust research on FOBTs showed that 37% of players exhibited signs of problematic gambling. At stakes of more than £13.40 a spin, that rose to 80% of players exhibiting problem gambling behaviour. One third of problem gamblers calling the national problem gambling helpline cited FOBTs as their issue. Let us be clear that the debate is about fixed odds betting terminals and the blight they cause on society.