Project Phoenix

Project Phoenix is a comprehensive stakeholder consultation exercise that brings together service users, families, carers, clinicians, commissioners and other stakeholders to:

  • Explore the challenges and opportunities that lie ahead for bleeding disorder care
  • Share the excellent practice that’s already out there, and
  • Identify and implement sustainable actions that will have a real and positive impact for people with bleeding disorders.

Our aim is to share current effective practice in new ways that reach more people and to identify achievable, acceptable and sustainable practices; those that can be used locally and nationally to reduce inequalities and enhance the quality of care for ALL people with bleeding disorders.

Through sharing your stories with us, you can ensure that future bleeding disorder care continues to innovate for the benefit of all, building on the best and reducing the hurdles, such as fragmentation and administration, that have characterised services in the past.

Why Project Phoenix?

Historically, care models evolved to meet the needs of those with severest forms of bleeding disorders. That means they were primarily focused on men. With emerging treatments and approaches, many of these patients are now able to manage their conditions at home while some traditionally less visible patient groups, such as women, those with milder forms of bleeding disorders, the elderly and those with rarer conditions, are becoming more visible. As the patient population changes, the nature of the service provided will also need to evolve.

In the context of this continuing evolution of the patient population and available treatments, last year saw the culmination of two major consultation exercises focused the bleeding disorder community. In May 2020, the Quality Review Service completed a peer review of bleeding disorder services on behalf of the UK Haemophilia Centre Doctors’ Organisation (UKHCDO) followed in November by the report of the All Party Parliamentary Group Inquiry into Access to Treatment. Both reports put forward important recommendations relevant to addressing the unmet healthcare needs of people in the community. But as we all know, 2020 was the year of the lockdowns. The COVID-19 pandemic has seen many bleeding disorder centres respond positively and rapidly to alter the way that care is delivered.

In “normal” times, achieving such changes can be painfully slow for health care services. But crises create opportunities for reinvention in ways that are rarely possible during normal times and it may be that some newer practices may enhance care if kept in place beyond the pandemic.

So 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.