Haemophilia is an inherited bleeding disorder characterized by recurrent bleeding into muscles and joints with longer term effects including synovial hypertrophy and destruction of the articular cartilage. The national service specification for haemophilia states that 'specialist physiotherapists trained in line with the Haemophilia Chartered Physiotherapists Association' (HCPA) should be a part of haemophilia services. Despite this, there is huge variability in funded, protected hours for physiotherapists working in this area across the UK. Implications of inadequate physiotherapy provision for these patients is far reaching, including increased bleeds and subsequent joint damage for patients, increased factor costs, and increased pressure on haemophilia doctors. One of the key objectives of the HCPA is to establish core principles of care, determine the levels of service provision and improve physiotherapy services for people with haemophilia in the UK.
In 2017 the HCPA put forward expert consensus core principles of care for physiotherapy management of people with haemophilia, which has been adopted by the UK Haemophilia Centre Doctors' Organisation (UKHCDO). The HCPA standards state that 'the specialist physiotherapist should have dedicated/protected hours and flexibility within this to manage their haemophilia caseload/service'. The HCPA surveyed all Haemophilia Treatment centres in the UK asking for details on physiotherapy staffing, patient numbers and factor use.
With a strategy to improve physiotherapy provision for people with haemophilia and working in collaboration with the UKHCDO and the national patient organisation 'The Haemophilia Society', the HCPA contributed to a national peer review programme which aims to review current haemophilia services against these core standards.
Initial benchmarking data identified 74 physiotherapists working in haemophilia services.
A national peer review will begin in August 2018, with a physiotherapist present on the reviewing team at each visit. Physiotherapy provision in haemophilia services will be assessed by a physiotherapist against the HCPA standards of care. Services not reaching this standard will be highlighted to Trust Chief Executives, local and national commissioners, and this information will be made publicly available.
Recognition by specialist commissioners of a physiotherapy assessment as a key quality dashboard outcome metric for patients with haemophilia. Validation training for the current outcome measure is run by the HCPA, with the most recent session in November 2017. Discussions with commissioners resulting in changes to the metrics is ongoing.
In February 2018 at the annual HCPA 2-day educational meeting, a focus on preparing business cases and creating opportunities for physiotherapy within the current NHS.
There is huge variability in funded hours for physiotherapists working in haemophilia services across the UK. Members of the HCPA are working with the UKHCDO, commissioners and service managers to increase communication and understanding of the implications of this to patients, services, commissioning, the NHS, the taxpayer. Positive results are evident and work is ongoing.
Founding principles of the NHS say that high quality care should be available for all. The considerable implications of inadequate physiotherapy provision prove that not only are physiotherapists essential, but they are a high value solution moving forwards in these challenging economic times.
This work was not funded
This work was presented at Physiotherapy UK 2018.