We are excited to announce we have produced a guide for transplant patients to help them navigate the weeks, months and years after a blood stem cell or bone marrow transplant.
The publication was developed after Michelle Kenyon, a transplant nurse at Kings College Hospital, London, heard from patients that they were lacking information about what to expect after receiving a transplant.
The new guide The Seven Steps: The Next Steps is co-authored by Dr Bronwen Shaw, consultant haematologist at Royal Marsden Hospital and Anthony Nolan’s Chief Medical Officer.
Michelle was instrumental in the creation of the original Seven Steps guide, first produced in 2002 in conjunction with Leukaemia & Lymphoma Research, and saw how useful her transplant patients found the handbook, which covers the key stages of undergoing a transplant.
Talking about the creation of The Next Steps, Michelle says: ‘Seven Steps started as a conversation piece when I was a transplant co-ordinator. It was made up of all the things I wanted to talk to patients about when they came into clinic before the transplant. Many patients have lots of questions, while others aren’t quite sure what to ask, and there just wasn’t time to cover everything in enough detail.
‘I also felt it was important to give patients information that they could take away and look at in their own time. After a while, patients fed back about other things they wanted to know: things which were perhaps mentioned in detail in the Seven Steps, and related more specifically to life post-bone marrow transplant.’
It was then that Anthony Nolan’s Dr Bronwen Shaw, became involved in the project. Her collaboration with Michelle determined the approach: a follow-up to the Seven Steps focussing in much more detail on the longer-term stages in recovery after a bone marrow transplant.
Bronwen adds: ‘All my transplant patients use Seven Steps during their journeys and find it an extremely useful resource. But once patients transfer to my late effects clinic there is no equivalent resource and patients often cannot find information about survivorship from a single easy-to-access source. Patients prefer a dedicated booklet that they can bring along to clinic and make notes in, rather than multiple print-outs from the internet or photocopied sheets.
‘In addition, many patients want to raise issues which relate to quality of life - such as body image, sexual function and psychological changes - but may feel reluctant to introduce these in the belief that they are not common, or are not life-threatening and so less important. This booklet allows patients to see the extent of some of these issues and hopefully helps them feel more comfortable raising them in clinic.’
Michelle and Bronwen have been extremely pleased with the response so far and are hoping many more patients will be able to access the valuable research.
You can order a copy of The Seven Steps: The Next Steps by emailing patientinfo@anthonynolan.org with your details.