The Policy and Public Affairs Team is always working hard to keep stem cell transplantation on the political agenda and make sure that the patient voice is heard by the Government.
That’s exactly what happened this Tuesday, 24 January 2017, when Mark Tami MP led a debate on ‘Access to Stem Cell Transplants’. Not only is Mark a Co-Chair of the All-Party Parliamentary Group on Stem Cell Transplantation, his son has also received a lifesaving stem cell transplant.
It was fantastic to see Mark and other MPs from a number of different parties come together in support of this issue. The other great thing about debates like this is that the Government has to respond – last night they were represented by the Minister for Public Health and Innovation, Nicola Blackwood MP, who visited the Anthony Nolan Laboratories and Research Institute just a few weeks ago.
Recognising our lifesavers
Mark kicked off the debate by highlighting that ‘a stem cell transplant offers a last chance of life to people with blood cancer or a blood disorder’. It can be a bit of a misunderstood treatment so it’s really important to raise awareness of just how important it is, particularly when you’ve got the Government listening.
There was special recognition paid to all the people who have donated their stem cells in the past, and all those who have joined our register and might donate in the future, which was great to see.
Of course, we know that for some people it isn’t easy to find a donor. Everyone agreed that while progress has been made, more needs to be done to increase the number and diversity of people on our register. There was a lot of support for the work that Anthony Nolan is doing in this area.
Making the case for second transplants
The majority of the debate focused on NHS England’s decision to deny funding for second stem cell transplants, which we know lots of you are really concerned about.
As well as publicly campaigning to try and get NHS England’s decision reversed, we’ve been working behind the scenes to make sure that MPs understand how strongly people feel about this issue. This has involved meeting them in parliament, keeping them updated on key developments, and providing them with background information and real life stories ahead of important debates like this one.
Doing all of this helped the MPs who spoke in the debate make a really strong – and heartfelt – case for second transplants.
They started by summarising the facts: one in three patients who receive a second transplant will reach the milestone of five-year survival; the medical profession recommends the treatment; and it’s available in other parts of the UK, countries across Europe and in the United States.
David Burrowes MP, who Co-Chairs the All-Party Parliamentary Group on Stem Cell Transplantation with Mark, also made the argument that patients ‘should not simply be cut off and told that they have had their go’. He called it a ‘scandal’ and we agree.
However, it was hearing the real-life stories of people who are affected that was undoubtedly the most powerful part of the debate.
Take Sasha Jones, a 34-year-old mother of two from Greenwich, who has been forced to pay for her own second transplant. A petition started by her friends and family, calling for a reversal of NHS England’s decision to deny funding for second transplants, now has nearly 170,000 signatures.
Also mentioned were Emma Paine and Emily Welfare, who both received second transplants last year, but not without a struggle. A quote from Emma was read out during the debate: ‘I always assumed that…the biggest barrier to having my second transplant would be to find another donor – not having to fight the NHS to get it funded.’
Having put forward a whole host of strong arguments in favour of second transplants, Mark, David and the other MPs in the room asked the Government if they would do more to hold NHS England to account and ensure that every patient who needs a second transplant has access to one. So what did they say?
The Government’s response
The Minister started by thanking all those who allowed their personal stories to be shared. She recalled meeting Emma a few weeks ago, noting that she is ‘alive and well because of a second transplant and is a powerful advocate for the cause’ – we’ll take that as the Government saying that Anthony Nolan campaigners are brilliant!
On the subject of second transplants, the Minister explained that she had spoken to NHS England – which is a sign that the Government are taking the issue seriously. The Minister underlined the need for strong evidence before the decision can be changed and we’ll be working as hard as we can to strengthen the evidence for second transplants even further.
The Minister also promised to speak to her colleagues in the Department of Health about the need for NHS England to be more open about how they make their decisions and to communicate these decisions to patients with greater sensitivity – especially when they’re life and death, as is the case with second transplants. These are things that we’ve been pushing for, so it’s great that the Government has listened to patients’ concerns.
Your voice makes a difference
We’re really pleased that this important debate took place. It was a fantastic opportunity to raise awareness of stem cell transplantation, and put pressure on both the Government and in turn NHS England to take action on second transplants.
While we’ve still got more work to do, the debate was a brilliant example of the impact that real life stories can have. To all the patients who have ever shared their story with us, thank you.
Coming soon will be a new campaign on second transplants. If you have a story to share, we would really like to hear from you. Please email firstname.lastname@example.org or get in touch via Twitter or Facebook.