A stem cell transplant is just the beginning of a patient’s long journey towards recovery. After they leave hospital, they can face a huge range of physical, emotional and practical challenges, but many patients are left asking: ‘Who cares?’
Why do we care?
- Patients are often left unprepared for the challenges they face after their transplant
- Many patients and their families are not offered the emotional or practical support they need throughout their long-term recovery
- Patients regularly have to deal with a lack of coordination between different parts of the health service.
READ OUR REPORT
Anthony Nolan’s new report, Recovery After Transplant: Who Cares?, shows that the way in which services are paid for, or ‘commissioned’, is not working for every patient.
What is the ‘Who Cares?’ campaign all about?
The ‘Who Cares?’ campaign calls for an urgent review of the care and support that patients receive after their stem cell transplant.
For some patients, a stem cell transplant is just the beginning of a long journey towards recovery. After they leave hospital, they can face a huge range of physical, emotional and practical challenges caused by the side-effects of treatment.
Anthony Nolan has done some research that reveals considerable variation in the care and support that patients are able to access during their long-term recovery. This is because the way in which services are paid for, or ‘commissioned’, is not working for every patient.
That’s why between 14 September and 17 October 2017 we’re calling on people to email their MP, to ask them to back our call for an urgent review– this is important because we need to make sure patients’ voices are heard and MPs can help us do this.
What are the problems with the care patients receive?
Our research shows that the vast majority of people were generally happy with the care they received from health service staff, with 9 in 10 (89%) saying that the people treating and supporting them worked hard to give them the best possible care.
However, other findings revealed considerable variation in the care and support that patients were able to access during their long-term recovery. Patients told us that services are often uncoordinated, and many of those who want advice and information are not able to access it easily, if at all. Emotional and practical support is not being offered to many patients and families who need it once they leave hospital, and during their long term recovery.
Furthermore, many patients do not feel that they have a dedicated point of contact they can approach with questions and concerns once they leave hospital.
Without clear information and signposting, some patients told us they had to be pro-active and manage their own recovery, which can be a significant burden.
Every stem cell transplant patient should receive an answer to a simple question: ’Who cares about my recovery after transplant?’ But at the moment there is confusion within the healthcare system about who is responsible for commissioning the services that patients need.
Currently, hospitals only receive appropriate funding for the first 100 days of a patient’s journey after a transplant – beyond that, it’s not clear who has responsibility. Therefore, there is an urgent need to review how services are commissioned after the 100 day cut-off.
What are you asking MPs to do?
Ultimately, we want the people who plan and pay for post-transplant care – ‘health commissioners’ – to:
- Urgently review the care and support that patients receive after treatment, 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.
With MPs’ support, we can raise awareness of this issue in Parliament and put pressure on decision-makers to commit to an urgent review. Without action now, many patients will continue to be denied access to the services they need.
What impact does it have when I email my MP?
MPs listen to their constituents, so if you email them it’s really going to help us get post-transplant care on the political agenda.
There’s number of ways that MPs can support the campaign, for example, writing to the relevant health secretary, taking part in a debate or tabling a parliamentary question – it all helps make sure patients’ voices are heard.
Where can I go to get more support or advice?
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.
The Patient Services team also coordinates a network of dedicated specialist post-transplant nurses. By April 2018, Anthony Nolan will have funded nine clinical nurse specialist posts in transplant centres across the UK.
We understand that this campaign may raise questions or concerns, so if you need help finding the answers or if you just need a listening ear, we can help – please visit our website for more information.