The recent All-Party Parliamentary Group (APPG) on Stem Cell Transplantation inquiry into barriers to accessing treatment and care has launched its report, No Patient Left Behind (click to download).
At the launch of the APPG report, Henny Braund, Chief Executive of the UK stem cell registry Anthony Nolan, spoke about the key findings and recommendations of the report, which Lord Bethell, junior health minister then spoke to in relation to existing and future government support. The set of recommendations was really interesting, centring partly around extending psychological support for transplant patients.
I had submitted written evidence to the inquiry and attended the oral evidence session based on my own research projects including Mix & Match. I was really pleased to see that early findings from the project were referenced as evidence in the final inquiry report, specifically in relation to the need to recognise at a policy level the role of (and difficulties confronting) patients/families in raising awareness of stem cell donation, often in the form of individual patient appeals which are known to draw large numbers of registrations to stem cell registries both in the UK and abroad.
The Inquiry learnt how the inability to find a match can mean patients from a minority ethnic background spend a substantial amount of time undertaking a patient appeal to encourage more people to join the register, in the hope they will be able to locate a match. This can be a huge emotional undertaking, with patients and their families having to talk about their diagnosis publicly, which might be taking place while they are receiving physically demanding treatments like maintenance chemotherapy.Page 16, No Patient Left Behind
This point is something discussed in a recent paper presented at the British Sociological Association’s annual conference, which was cited in the report. In this paper, a recording of which is publicly available below, I discuss some of the challenges confronting individuals and their families who are involved in patient appeals for donor recruitment. I wrote a blog post about the paper here.