In December 2023, the Long Covid Groups - Long Covid SOS, Long Covid Support, Long Covid Physio and Long Covid Kids wrote to Prime Minister Rishi Sunak to ask for more investment in biomedical Research into Long Covid, especially trials into treatments. We also asked for better public awareness education and campaigns and improvements in service provision. The linked petition has to date gathered nearly 5600 signatures.
We received a response in February, not from Rishi Sunak himself but from Maria Caulfield MP, who is Parliamentary Under-Secretary of State for Mental Health and Women's Health Strategy. The response was extremely disappointing and did not adequately address the points we raised. You can read her letter here
We have now responded to Ms Caulfield and the letter is below or here where it can be downloaded. Our main points are:
The £50 million which the government mentions every time Long Covid research is raised as an issue was allocated in 2021, three years ago. It is extremely hard to secure grants now for Long Covid research, and the previously funded studies cannot attract any more funding to extend their research
It need not take 10-15 years to develop new therapeutics - Covid vaccines are a good example
Ring fencing funding for Long Covid makes sense as this is a brand new disease impacting hundreds of thousands. New, extra funds are required
Her comments about 'consistent messaging' about the risks of Long Covid do not reflect reality
Healthcare provision via the NHS England Long Covid clinics is variable and often inadequate. The Your Covid Recovery website has been decommissioned
We are asking for £80 million in new research funding as a matter of urgency
Update: We have since received a disappointing and unsatisfactory reply from Ms Caulfield, which you can read here
What a great letter in which we need answers to. The groups and myself won't rest until it is written in stone of what they are going and actually do