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 is Project Phoenix needed?
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.
How is bleeding disorder care delivered?
Haemophilia and other bleeding disorders are complex, rare, lifelong conditions that affect and influence all other health issues, and involve musculoskeletal, psychosocial and other complications.
Comprehensive care, as described by the World Federation of Hemophilia, aims to minimise disability, prolong life, facilitate general social and physical wellbeing, and help patients achieve their full potential.
The delivery of comprehensive care for haemophilia and bleeding disorders is based on a multidisciplinary approach whereby a team of expert health care professionals address different aspects of care.
Care should be patient-centred and adapted to the specific needs of different life stages. Due to the inherited nature of bleeding disorders, it should also be family focused. Benefits of this model of care for bleeding disorders include fewer hospitalisations, decreased healthcare utilisation, better quality of life, and improved outcomes in morbidity and mortality.
In the UK, haemophilia care is delivered via 28 Comprehensive Care Centres (CCCs), each of which is linked through networks to smaller haemophilia treatment centres to support local care delivery. The multidisciplinary teams based at CCCs are made up of experienced health care professionals who follow clear and agreed care pathways within a managed clinical network with links to interdependent services. These professionals include doctors, specialist nurses, physiotherapists, psychologists and social workers, as well as dentists, laboratory service personnel, data managers and more besides.
The ideal for comprehensive care in haemophilia is for patients to develop the confidence and skills to self-manage their condition. They should understand the appropriate treatment for its control, agree a care plan through shared decision-making with the multidisciplinary team, and have access to continuous follow-up. Clear communication of information to the patient is key in supporting this and empowering patients to voice their own expertise, experience and preferences in decisions around their care.
How is bleeding disorder care funded?
Within the UK’s National Health Service, the planning and purchasing of services is currently undertaken by commissioning organisations (or individuals), who are responsible for assessing the needs of their populations and buying services that are affordable and of the highest quality. Clinical Commissioning Groups (CCGs), overseen by NHS England, now commission most of the hospital and community NHS services in their local areas.
But services provided for people with rare and complex conditions are generally planned nationally and regionally by NHS England. This is because such services are:
- Used only by a relatively small number of patients
- Relatively high cost to provide
- Able to be provided only by specialist teams of doctors, nurses and other health professionals who have the necessary skills and experience (and so are not available in every local hospital).
Services for people with haemophilia and other bleeding disorders – medical conditions in which the blood fails to clot properly, and which affects around 24,000 people in the UK – are commissioned centrally as a specialised service. This includes all care provided by specialist haemophilia centres, whether inpatient care (where the cause of admission is related to a bleeding disorder) or outpatient care (delivered locally or at home as part of a provider network).
The Specialised Blood Disorders Clinical Reference Group has developed a service specification for haemophilia services. This defines the standards of care expected for haemophilia care. Quality standards are assessed through peer review and a Specialised Service Quality Dashboard.
The current specification states that “The aim of the service is to enable patients with haemophilia and other bleeding disorders to live as normal a life as possible, ensuring optimum treatment with clotting factor to maintain a bleed free existence where possible, whilst maintaining good joint health and general health.”
The current service specification dates back to 2013/14 and is due for renewal. It is reasonable to assume that any revision to the service specification will reflect the ambitions set out in recent policy guidance issued by the NHS.
It is also reasonable to assume it will reflect the views of service providers and service users. And that’s where Project Phoenix comes in.
Over the past six months, we’ve surveyed and sought detailed views from members of the UK’s bleeding disorder community. That means we’ve been talking to
- Doctors (and their representative body, the UK Haemophilia Centre Directors Organisation)
- Nurses (and their representative body, the Haemophilia Nurses Association)
- Physiotherapists (and their representative body, the Haemophilia Chartered Physiotherapists Association)
- Psychologists (and their representative body, the Haemophilia Psycologists Association)
- Social workers
And of course to service users, families and carers, and their representative bodies, The Haemophilia Association, Haemophilia Scotland, Haemophilia Wales and Haemophilia Northern Ireland.
Click the links above to read summaries that seek to capture what each of these groups want from the care they provide or the care they receive.
We’ve also taken a look at some of the lessons that can be learned from how the NHS organises services for other long-term conditions, such as cystic fibrosis.