Lord Sharkey
Chair of the Specialised Healthcare Alliance
Last year was extraordinarily difficult for people with rare and complex health conditions. In 2021, it is vital these patients receive the care they need and deserve.
The COVID-19 pandemic has been extraordinarily difficult for people with rare diseases and their loved ones. Many have had to shield for almost a whole year, often without social care support and limited access to their clinical teams. Charities – such as the 100+ members of the Specialised Healthcare Alliance (SHCA) – have worked tirelessly to support people with such conditions, with greatly diminished funds and furloughed staff.
But out of the ashes of 2020 comes hope. Through the COVID-19 vaccination programme, we are offered a glimpse of a return to a near-normal way of life. The health service, too, will see significant changes, and it is crucial these changes deliver improvements to the lives of people with rare and complex health conditions.
Joined-up care
Many people with rare conditions require a combination of physical and mental health services and social care, but face challenges in accessing the support they need. The proposed NHS reforms offer the potential to join up health and social care, but work is now needed to deliver on this promise. Integration will require time, negotiation and substantial investment, particularly regarding adult social care. Further assurance is needed that any change from national to local planning of specialised services will improve standards of care.
But out of the ashes of 2020 comes hope. Through the COVID-19 vaccination programme, we are offered a glimpse of a return to a near-normal way of life.
Rare Disease Framework
The Government recently published a Framework to increase awareness, speed up diagnosis and improve treatment and care of rare diseases. The devolved nations will now produce plans for applying the Framework in their regions, working with the SHCA and patients they represent to understand how their experiences of the pandemic can shape implementation.
Access to medicines
Most rare conditions have few, if any, treatments available. Medicines access is due to undergo significant changes over the next year, following the end of the Brexit transition period, and with the creation of the Innovative Drugs Fund and the finalisation of the NICE methods review.
At the heart of these changes, the patient voice must be heard. Throughout the year, the SHCA will provide scrutiny so that people with rare diseases are taken a step closer to receiving the care they need and deserve.
