Finding the 'right' GP: a qualitative study of the experiences of people with long-COVID

Dear Sir
Kingstone et al focus in on the important role of GP services for people with long COVID. Their key findings (“the ‘hard and heavy work’ of enduring and managing symptoms and accessing care; living with uncertainty… and the importance of finding the 'right' GP” who can provide the appropriate empathy and support) have remarkable parallels with the experience of people living with rare conditions. Collectively rare conditions make up a substantial proportion of the burden of disease in the UK, with around 3.5 million people affected. And we have known for a long time that the problems raised by Kingstone are the cause of poor mental ill health and a compromised ability to lead a normal life for many of those living with rare conditions.
We hope that the harsh light being shone on the ability of the health service to meet the needs of people with an ‘unknown’, complex and debilitating condition (long COVID) will also remind us how important it is to improve services for rare diseases. We give our full support to the NHS and policymakers as they grasp the opportunity represented by the new UK Rare Diseases Framework and the development of effective and bold national plans in response.
For information about the Framework and the national campaign to improve the lives of people living with a rare condition, your readers can visit raredisease.org.uk.
Yours faithfully

Dr Amy Hunter
Genetic Alliance UK
geneticalliance.org.uk