LongCovidSOS respond to the new NHS 'Your Covid Recovery' service

The Your Covid Recovery portal is welcome in that it is a first step towards the government properly acknowledging that recovery from Covid-19 is not straightforward.  However, we believe that at present it cannot fully address the needs of the majority of Long Covid sufferers. 

The NHS portal contains a great deal of good advice, but seems to be targeted at those who were hospitalised and are having ongoing symptoms in the medium term.  The assumption is that these patients will improve over time and need advice to help them manage symptoms which will settle down.  In the 'when do I need to seek help' section they suggest that breathlessness should be greatly reduced by 6 weeks and most symptoms will settle by 3 months - this does not appear to be the case for the vast majority of Long Covid sufferers.  The assertion that [all] symptoms should settle by six months is encouraging, but it remains to be seen if they are correct since most people in the UK contracted the virus 4-5 months ago and many are not showing signs of being symptom-free.

Our main concern with this portal is that it does not provide the multidisciplinary medical attention which those with Long Covid sorely lack - many have only had remote contact with their GP or basic tests if they were advised to go to A&E by 111 (usually blood tests, ECGs and X-rays in some cases).  Many people suspect they have cardiovascular damage - some of those sufferers who have managed to get a consultation with a cardiologist, often privately, have been told that they have scarring and/or inflammation to their hearts.  Some have been advised that this will resolve in time, others have been offered medication.  A recent paper from Germany describes how more than 75% of people who have contracted Covid-19 were found to have damage to the cardiovascular system and that this proportion did not correlate to hospital admission - in other words, those with so-called 'mild' symptoms who managed at home were equally affected.  This study has led doctors to surmise that those affected could be more vulnerable to heart failure at some point in the future, suggesting that they need careful ongoing monitoring.

Other sufferers have neurological symptoms that need investigating, or continuing problems with their lungs.  In all of these cases, they will still need to ask their GP to refer them to regular NHS clinics so in this respect the portal does not change anything.  Unfortunately some people with Long Covid have found their GPs to be less than sympathetic, and a number have been told their symptoms are caused by anxiety.  The website suggests that sufferers 'may be offered a programme of recovery'. However on this subject the website is vague: "A health care professional will need to refer you to a centre that will assess your needs and support you through this programme" but apparently this programme may not be available in all areas of the country.

We have been campaigning for multi-disciplinary clinics to be set up for all sufferers, no matter where they live in the UK.  We hope that this initiative is just the first step, and that the 'centres' which are referred to will be easily accessible to all patients so that they can have proper assessments and easy access to multidisciplinary teams.  Covid-19 is now accepted to be a 'whole body' disease and the medical response needs to reflect this.