HBDCA is in the process of applying for Charitable Incorporated Organisation (CIO) status. It was established in January, 2018 to provide much-needed, high-quality, FREE, psychological and psychosocial support to the haemophilia and bleeding disorder community in the UK.
The formation of HBDCA came about due to the realisation that psychological provision is largely lacking as an integral part of the holistic package of care required to provide maximum benefit to a person affected by a bleeding disorder and their close family members.
Having spent most of 2018 training its team of five, HBDCA was commissioned to carry out a pilot Wellbeing Day in November 2018, for the Royal London Hospital Haemophilia Department. Following its success in establishing the need for psychological support, HBDCA was contracted, in April 2019, to provide ongoing psychological support to the Royal London Hospital patients at the Haemophilia Centre.
In addition to one to one sessions, with patients from the Royal London Haemophilia Department, HBDCA ran quarterly, themed Wellbeing Days, as well as making available a monthly peer group session for adult patients.
Psychological therapy is often difficult to access at haemophilia centres, frequently with long waiting lists. If accessed privately, therapy can not only be very costly but also does not necessarily provide the most effective support due to a lack of in-depth knowledge by the counsellor of specific issues faced by this community.
HBDCA aims to alleviate the lack of access whilst also being able to provide free psychological support through seeking out funding opportunities and through sponsorship and fund-raising.
Although psychological support to the Royal London Haemophilia Department is currently on hold, due to the Covid-19 pandemic, HBDCA expects to return to the Royal London, once the pandemic ceases and lock-down is lifted. Psychological support has never been more needed, and in the days, months and years ahead, will be needed even more by both patients and healthcare professionals themselves.
HBDCA also supports members of the Infected Blood community. Currently, we have no funding to do this, but we believe it is essential this support is given to such a vulnerable cohort. We are lobbying to get funding currently, to enable us to continue to support those we already work with and to widen this support and make it available to all those who need it.