To represent the needs of patients, we root our policy and public affairs work in the lived experience of those on their transplant journey. Working alongside blood cancer and blood disorder patients, we ensure their first-hand insights guide us as we influence public awareness and push for positive change in services.
Opportunities to contribute
Being able to speak from experience, the voices of patients, families and carers couldn’t be more important to shaping Anthony Nolan’s policy agenda. If you can contribute to this vital work, we welcome you to get involved through one these two paths:
- Policy Insights Panel – made up of patients at different stages of their transplant journey, the panel works alongside Anthony Nolan to ensure stem cell transplant patients across the UK have vital access to the treatment, care and support now and in the future. Find out more about the Policy Insights Panel and how to join here.
- Patient and Families Panel – the Patient Services team at Anthony Nolan oversee this panel. They email the Panel every few weeks with projects that you might like to be involved in and learn more about your personal experiences. Find out more about the Patients and Families Panel and sign up here.
- Links to surveys – We sometimes ask patients and family members to take part in surveys which help shape and inform our policy work. We currently do not have any surveys open, please check back again soon as we often seek patient and families views in our policy and public affairs work.
Our team is currently developing our brand new ‘Patient Manifesto’, a forthcoming report which will bring together all of Anthony Nolan’s policy priorities and outline the most needed changes in treatment and care.
Anthony Nolan has a document that brings together all our policy priorities, these are the things we think need to change in order for treatment and care to be as good as it can be. The most recent version of this document is Destination: Cure but we want to update that, which is why we are developing a ‘Patient Manifesto’.
This Patient Manifesto is being developed alongside the Policy Insights Panel and an Advisory Group made up of healthcare professionals and those working within stem cell transplant services. Collating a breadth of views across clinical experts and patients, the Patient Manifesto will set out what a stem cell transplant journey should look like for patients and families, as well as what actions need to be taken to make this a reality.
Stem cell transplants and COVID-19: what have we learnt from patients during the pandemic?
At the height of the COVID-19 pandemic, when we had first gone into lockdown, we ran a survey for people who were either recipients of a stem cell transplant or awaiting a stem cell transplant. We ran a follow up in the summer of 2020. These two surveys informed a report titled ‘Stem cell transplants and COVID-19: what have we learnt from patients during the pandemic?’ The report offers a snapshot view of stem cell transplant patients' experience of treatment and care in the context of the COVID-19 pandemic.