Women and girls face greater difficulties accessing treatment, diagnosis and referral for bleeding disorders
Due to a lack of resources, wider holistic needs are not being met by treaters across the UK, writes Diana Johnson MP. | PA Images
The APPG on Haemophilia and Contaminated Blood's inquiry into bleeding disorders found the UK has fallen behind in outcomes for people with bleeding disorders.
Despite major steps forward in the treatments available to people with bleeding disorders, most still see their lives held back by their condition. This is the conclusion of the new report by the All-Party Parliamentary Group (APPG) on Haemophilia and Contaminated Blood.
This week we published the final report of a detailed review of the standards of care and access to treatment for people with bleeding disorders in the UK. It found that the vast majority of people with bleeding disorders were not very involved in decision-making about their treatment; good multi-disciplinary care was rare; and women and girls found it harder to get diagnosed and access care.
The APPG on Haemophilia and Contaminated Blood campaigns in Parliament with and on behalf of people with bleeding disorders. In recent years, we led the successful Parliamentary campaign for the Infected Blood Inquiry to be established.
In April 2019, the APPG launched an inquiry to understand to what extent people with bleeding disorders get the best care and what barriers there are to improving outcomes. The final report made nineteen recommendations to government and the NHS under three main themes.
There is a lack of informed and collaborative decision-making between patients and clinicians
Firstly, while the report looked in detail at drug treatments, it is clear that proper access to treatment goes beyond just drugs provision. It includes proper care from a multi-disciplinary team of professionals. Due to a lack of resources, wider holistic needs are not being met by treaters across the UK.
Many patients are not seeing genuine comprehensive care. A peer review of haemophilia centres published earlier this year confirmed the scale of this problem. Only half of centres have sufficient physiotherapy provision and less than a third provide dedicated psychological or social worker support. As a result, the UK has fallen behind other comparator countries, such as France and Germany, in outcomes for people with bleeding disorders.
Secondly, there is an inequity in access to treatment for many people. Women and girls have greater difficulties in accessing treatment and face disproportionate delays in diagnosis and referral to care.
At the report launch this week, APPG members heard how on average it takes seven years for women to be diagnosed with a bleeding disorder. Many others spend years navigating primary care and it is thought that as many as 50,000 UK women may never receive a diagnosis at all. The report also notes that rarer bleeding disorders, such as FX deficiency and Factor XIII deficiency, have had or continue to see delays in approval for newer treatments.
Finally, there is 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 fewer than half feeling able to influence their choice on treatment. The inquiry instead observed a system where commissioners’ desire to drive down costs are unduly influencing proscribing decisions at the cost of patient choice and holding back innovation in treatment.
We will now work with the government and the NHS to ensure that our report’s recommendations are fully considered and implemented so that people with bleeding disorders no longer see their lives held back by their condition.
Dame Diana Johnson is the Labour MP for Kingston upon Hull North and co-chair of the APPG on Haemophilia and Contaminated Blood.
To read more about the work of the APPG or to download the full report click here.