The APPG on Haemophilia and Contaminated Blood are a group of MPs who campaign for people with bleeding disorders. They decided in 2019 to launch an inquiry into Access to Treatment and Care for people with bleeding disorders across the UK. This was in light of growing evidence that people with bleeding disorders were not getting the best treatment in a timely way and increasing evidence of wide variation between standards and outcomes across the UK.
Today the group of MPs has published the final report of the inquiry.
To inform its conclusions the inquiry took oral evidence from people with bleeding disorders as well as NHS representatives and pharmaceutical companies. It also received a wide range of written evidence and visited the Haemophilia Centre at the Royal London Hospital in Whitechapel.
After the initial call for evidence there was a delay in the final publication of the report with both a general election late last year and this year’s Covid-19 pandemic but we are pleased to be able to launch this report today.
The report lays out the current state of treatment and care for people with bleeding disorders and makes 19 recommendations to the NHS, Government and clinicians to improve outcomes. The APPG hopes key stakeholders will consider this report and its recommendations carefully and look to respond to and implement its recommendations as soon as practical.
The report’s recommendations fall into three main themes:
Firstly, access to treatment goes beyond just provision of drugs but includes proper care from a multi-disciplinary team of professionals. As a result of a lack of resources wider holistic needs are being ignored by treaters across the UK. The peer review of haemophilia centres published earlier this year confirms the scale of this problem with only half of centres having sufficient physiotherapy provision and less than a third providing dedicated psychological or social worker support. The UK seems to have fallen behind other comparator countries in outcomes for people with bleeding disorders.
Secondly, there is an inequity in access to treatment for many people. Particularly women seem to have greater difficulties in accessing treatment and appear to see disproportionate delays in diagnosis and referral to care. Meanwhile, rarer bleeding disorders such as FX deficiency and Factor XIII deficiency have had or continue to have delays in approval of newer treatments.
And finally, throughout the report, we see a lack of informed and collaborative decision making between patients and clinicians. Most people with bleeding disorders did not feel particularly involved in decisions about their treatment with less than half feeling able to influence their choice to treatment. The inquiry saw a system where commissioners’ desire to drive down costs was unduly influencing proscribing decisions at the cost of patient choice.
The Haemophilia Society and the APPG are extremely grateful to all the people and organisations who gave evidence to the inquiry. We also conducted a survey of people with bleeding disorders to provide data to inform this report which many of our members contributed to.
Funding for this inquiry and the publication of this report was provided by an unrestricted grant to The Haemophilia Society from Sobi. However, editorial control lay solely with The Haemophilia Society and the APPG and the views expressed in the report are those of the APPG.
To find out more about the work of the APPG visit the APPG webpage