Background on the Project Phoenix process

What have we done so far?

We have brought together a project steering group that is mapping out the project objectives. It comprises patients and advocates (Dr Rich Gorman, Dan Farthing, Gemma Gardner, Clive Smith) doctors (Dr Sarah Mangles, Dr Gary Benson), nurses (April Jones, Marie Eales), physiotherapists (Sarah Jones, David Hopper) and operational service managers (Heather Williams). Together they will shape the project.

We have deliberately kept the steering group small and are also engaging with a wider group of people across the clinical pathways (e.g. psychologists, dentists, orthopaedics, obstetrics and gynaecology, geriatricians, laboratories, OT, pharma and healthcare delivery companies and professional associations), to ensure we hear their perspectives and can work with them to identify and implement sustainable actions that will have a real and positive impact for people with bleeding disorders.

How can I have my say?

We are currently running a short survey to hear a snapshot of what patients, carers, parents and healthcare professionals think of and want from the services provided for people with bleeding disorders.

All of the information you share with us will be treated in confidence and will only be reported anonymously.

Please feel free to complete the survey more than once if you could answer from two perspectives, i.e. if you are a patient and a parent of child or carer/partner of another adult with a bleeding disorder.

If you choose, you can be entered into a prize draw to receive one of three £100 Amazon vouchers

What happens after the survey?

Project Phoenix is being led for Haemnet by Sandra Dodgson and Lisa Steadman, working with Youth Ambassadors from The Haemophilia Society. Together, they are reaching out to stakeholders across the whole community and across the care pathways.

It’s an ambitious programme. Whether by taking part in a survey or speaking to one of our researchers, we hope you’ll have your say. We’ll post regular updates here and on our social media channels so make sure you are following us and look out for the project hashtag, #ProjectPhoenix.

Peer Review and APPG recommendations: Ideas and examples

  • Full access to comprehensive, multidisciplinary care for all people with bleeding disorders

Bringing occupational therapy into the MDT

  • Uniform care standards for all people with bleeding disorders across the UK


  • Patient information and health literacy


  • Commitment to personalised care based on co-decision making


  • Services that focus on the needs of all people with bleeding disorders, regardless of severity


  • Equitable care for women who bleed


  • Access to services for older individuals


  • Uniform care standards for all people with bleeding disorders across the UK


  • A service specification that meets the needs of people with bleeding disorders


  • Optimal use of data to the benefit of people with bleeding disorders


  • Full access to information on bleeding disorders and treatments to underpin informed choice


  • Access to treatments based on patient relevant outcome measures


How is Phoenix being funded?

The Haemnet Foundation has received funding support for Project Phoenix from CSL Behring, Pfizer Roche/Chugai, and Sobi. Funders have no input into the design of the project or its outputs. We will be seeking views on current service provision from a broad range of people and organisations including the pharmaceutical industry.