Today (14 September 2017), we’ve launched a new campaign, ‘Who Cares?’ calling for an urgent review of the care and support that patients receive after a stem cell transplant. Our Policy and Public Affairs Manager, Amelia Chong, explains everything you need to know about the campaign and how you can help.
Why we’re campaigning with ‘Who Cares?’
This is Chris. He received a stem cell transplant in December 2007 to treat blood cancer and it saved his life. But his recovery hasn’t been easy, and there have been many physical, emotional and practical challenges along the way:
‘I had my stem cell transplant nearly 10 years ago, and since then, I’ve suffered with various complications. There were times when I felt I might be over the worst, but then something else would happen…It truly shocked me how poor the support after treatment can be, and nothing could’ve prepared me for what I faced.’
Unfortunately, we know that there are lots of patients like Chris.
Our new report, Recovery After Transplant: Who Cares?, reveals considerable variation in the care and support that patients are able to access during their long-term recovery. For example, according to the patients who responded to our survey:
- Only half (54%) of those who needed emotional and psychological support, such as counselling or group therapy, actually received it.
- Similarly, only half (50%) of those who needed practical support, such as help at home or getting back to work, were offered it.
- More than 1 in 3 patients (36%) did not receive the information they wanted about support or self-help groups.
The reason for all of this is confusion about who is responsible for planning and paying for the services that patients need after a stem cell transplant. Hospitals only receive appropriate funding for the first 100 days of a patient’s recovery but, beyond that, it’s not clear who’s picking up the bill.
It’s unacceptable that patients – and their families – are going without the care and support they need after a stem cell transplant. That’s why we’ve launched our new Who Cares? campaign.
What we’re calling for with ‘Who Cares?’
Ultimately, we want every patient to receive an answer to a simple question: ‘Who cares about my recovery after transplant?’. But this question won’t be answered while there is confusion about who is responsible for planning and paying for (or ‘commissioning’) the services that patients need after the 100 day cut-off.
That’s why we’re calling on health commissioners in the UK to:
- Conduct an urgent review of the care and support that patients receive after a stem cell transplant, including the impact of the 100 day cut-off.
- Work with Anthony Nolan and the clinical community to develop a plan to ensure that every patient has access to the services they need.
Without action now, many patients will continue to be denied access to the services they need, making their recovery all the more difficult. This needs to change and that’s where you come in.
How you can help ‘Who Cares?’
You can help by emailing your MP – with their support, we can raise awareness of this issue in Parliament and put pressure on health commissioners to commit to an urgent review.
Our action page makes it really quick and easy to contact your MP, and we even provide a template email for you to send. Most importantly, we know that MPs listen to their constituents, so please email your MP today.
If you’re really keen and would like to do even more to support our Who Cares? campaign we’d love to hear from you! You can get in touch with the Campaigns team by emailing firstname.lastname@example.org.
Where to go if you need information or support
From the moment a patient is told that they need a stem cell transplant, to recovery and beyond, Anthony Nolan provides information and support for patients and their families:
- Our Patient Services team and Lead Nurse provide support via telephone and email to patients and their families, helping with questions and providing guidance and information.
- We offer grants to people affected by transplant who have limited savings (typically under £150 for things like transport costs).
- We hold patient and family education days to help patients learn more about looking after their health, well-being and finances.
- We produce a wide range of useful patient resources, covering everything from receiving a transplant to managing aspects of recovery such as fatigue and graft versus hose disease (GvHD).