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Influencing for change throughout the transplant pathway

Our Policy and Public Affairs Team advocate for better care before, during and after a patient’s stem cell transplant. We passionately believe that everyone should have access to dedicated support wherever they live, and however long they need it.

But today, we know that the care many patients receive falls short.

‘When I first left hospital, I felt so alone, more or less dropped from a great height and left to deal with it. This isn’t how it should be. I feel passionately that the whole person needs to be cared for and not just their illness.’

Ruth Beaman, Expert Steering Group Vice-Chair

A pathway for post transplant care

In 2019, we developed  A pathway for post-transplant carea comprehensive, evidence-based report which sets out the services and support that every patient should receive after a transplant. It was developed by our Expert Steering Group in consultation with over 150 patients, family members and healthcare professionals. It highlights the need for:

  • Practical and specialist psychological support throughout recovery
  • Post-transplant vaccinations and screening for secondary cancers
  • Support from a multidisciplinary team of healthcare professionals
  • Rapid referral or signposting
  • Access to palliative and end-of-life care

You can read more about how we are putting the pathway into action here. This includes:

  • Continuously supporting transplant centres to improve the services they provide
  • Addressing key knowledge gaps and exploring ways to better monitor the care that patients receive
  • Empowering patients and their families to ensure they have access to the support they need.

Shaping transplant services in a post-COVID-19 world

As the NHS adjusts to the ‘new normal’, we’re making sure any changes to transplant care work in the best possible way for patients. This includes:

  • Providing insights into transplant patients’ experiences and concerns during the pandemic to policymakers
  • Helping transplant centres across the UK to share learnings and examples of what works well with one another
  • Influencing national cancer recovery plans through our alliances with other charities such as the Blood Cancer Alliance and the Scottish Cancer Coalition
  • Conducting research to understand how remote consultations can meet the needs of patients

Integrating transplant services

We’re also helping to ensure that new, more integrated NHS services pave the way for better transplant outcomes.

Highlighting the shortcomings in the current payment model for transplant services, we commissioned a large-scale analysis of hospital activity and costs following allogeneic stem cell transplants in England. Over the coming months we’ll be working with NHS England, transplant centres and other partners to help shape a new way of planning and paying for transplant services which delivers more seamless care across the whole pathway.

Get in touch

For more information, or to share your thoughts, please get in touch with our team: public.affairs@anthonynolan.org

Category

Governance