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We’ve come a long a way in a short space of time on long COVID – but there’s more to be done
It’s been just over two years since my colleagues and I working in general practice were faced with patients with a new, enigmatic illness.
We were seeing people who were experiencing ongoing, unexplained, and in some cases, seriously debilitating symptoms following COVID-19. And whilst many people were feeling better and recovering from COVID within weeks, for others it was a much more lengthy and complex experience.
Very quickly we came to recognise this as long COVID, a new condition with wide-ranging and varied symptoms, but most perhaps commonly characterised by severe fatigue and breathlessness. Long COVID can affect people of all ages and backgrounds, those who were hospitalised with acute COVID-19 and those who weren’t.
I share the frustration of patients when they come to us looking for answers, and sometimes it can be tough as a clinician to acknowledge we don’t have all the answers.
Long COVID remains a relatively new condition. We’re learning more all the time, and whilst we might not yet have a cure, it’s important to reassure people that they aren’t alone, and the NHS is here to support them through this.
In October 2020, we established the NHS long COVID taskforce to guide our national approach on long COVID.
We’ve been greatly supported by members of the taskforce, not least those who have shared their lived experience with us, along with healthcare professionals and partners from all backgrounds and professions.
In the space of just under 2 years the NHS has invested £224m to support people with long COVID, including setting up 90 specialist clinics, 14 children and young people’s hubs, developing the online Your COVID Recovery platform as well as investing in an enhanced service for general practice to ensure general practice teams are equipped to support people affected by the condition.
From a standing start this has meant designing and implementing new pathways of care, bringing together new, multidisciplinary teams, all whilst simultaneously battling an ongoing pandemic. There’s no doubt that this has presented a huge challenge, and colleagues working across England deserve huge credit for what has been achieved.
In addition to the support provided by primary care teams, over the past 12 months over 45,000 people have been seen by a specialist post COVID service. The latest data published from our friends and family test shows that a large majority of patients who responded had a good experience of care.
But we also know that there is still more to be done to ensure that support is there for everyone that needs it, and that people can access the specialist care they need in a timely manner.
We have recently published the NHS plan for improving long COVID services which reflects on the progress to date and acknowledges that there is more we need to do if we’re to meet the need of all those living with long COVID.
The plan is guided by what we’ve heard from people with lived experience, our colleagues across the system and our partners in the research community.
For patients, it means we’re working to reduce waiting times for specialist services and ensuring that you have a point of contact so you can speak to someone about your care.
We know that some people will experience more severe long COVID symptoms than others, so we’re also supporting services to introduce clinical triage to ensure patients who are most unwell are prioritised and care pathways can be determined within six weeks of referral.
We also know that the trajectory of recovery is unique to each person, and sadly people can experience relapses, which is why we’re ensuring patients are provided with information regarding their self-management plan and who to contact in the event of a relapse or development of a new symptom.
For our colleagues working in healthcare, we recognise it can be challenging when faced with a new condition, particularly one where the evidence base continues to evolve. So, we’re committing to developing educational resources to support teams in recognising and managing people with long COVID.
We also mustn’t forget that many of our colleagues working within the NHS will also be affected by long COVID. It’s therefore important that the NHS is a model employer when it comes to supporting staff living with the condition. This is why we have committed to publishing revised guidelines to help line managers and leaders understand what long COVID is, and how they can support colleagues who are experiencing its symptoms.
Our message to anyone who is experiencing ongoing symptoms following COVID is clear – you’re not alone, the NHS is here to help you. So, if you or a loved one are concerned, please get in touch with your GP practice, or visit the Your COVID Recovery website for further advice.