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Involving people who have had COVID-19, and carers, in developing rehabilitation services

27 August 2020 | Dr Erin Walker
Dr Erin Walker describes how UCLPartners has involved patients and carers in discussions about COVID-19 rehabilitation needs and how lessons learned have fed into London wide commissioning guidance.

I have never worked on a Patient and Public Involvement and Engagement (PPIE) project like this, in my seven years working in the area. It has been unique and wonderful.

On behalf of the London region of NHS England, UCLPartners staff within and across the partnership are working on developing rehabilitation services for people who have experienced COVID-19. Whilst many efforts globally have concentrated on understanding the virus, and developing treatments and a vaccine, less has been done to address the rehabilitation services needed by those who have had the virus. With increasing accounts of personal experiences, there now appears to be a great need to urgently develop and organise rehabilitation services for people post-COVID-19, who are experiencing a myriad of symptoms.

As you may imagine, this is large programme of work with several stages.

For the first stage, which we have just completed, healthcare professionals and academics were asked to identify documents which made suggestions around what rehabilitation services should include. This turned up 13 documents published by national bodies or professional societies that make 78 recommendations for rehabilitation services, in and outside of hospital.

To make this more comprehensible, Dr Amanda Begley, Director of Innovation and Implementation, organised these 78 recommendations in to four different themes, with general statements. These themes were:

  1. Assessment of needs and care coordination
  2. Infection prevention and control
  3. Involving people
  4. Recommendations for commissioners & providers

We then needed to discuss these with people who had had COVID-19, and/or carers, so they could tell us about their specific needs around rehabilitation. 

Professor Mike Roberts, Managing Director of UCLPartners, said: “With an opportunity like this, to develop a brand-new service, we needed to include all the experts. In the case of COVID-19, given it is a virus which affects multiple systems and therefore people can experience a large range of symptoms, it was crucial that we include experts by experience.  That is to say, we had to involve people who had direct experience of COVID-19, and people who cared for them, so we could truly understand the rehabilitation needs of these individuals.”

You can read more about the opportunity to get involved with this work here. We circulated the opportunity widely and were very fortunate that 12 people who had had COVID-19 (and some carers) joined us for a Zoom meeting, and 188 people completed a survey online. We also learned about the group LongCOVIDSOS through which, given their large network, we were able to offer a platform to many people who are experiencing what is now known as ‘Long COVID’ to express their opinions.

We wrote a report following the virtual meeting and online survey consultation, which was presented to the London Clinical Advisory Group. They are a multi-professional group that was formed during the pandemic to support NHS London to make effective and rapid strategic decisions, synthesising research evidence and clinical experience. The report was well received. NHS England and NHS Improvement London have now incorporated suggestions presented through the Zoom meeting and online survey in to their Guidance for the commissioning of clinics for recovery and rehabilitation. What a moment for those who have suffered from COVID-19, and their carers. This rarely happens, at such speed, and involving so many people. I think this speaks to the urgency of the situation, and also the awareness of how valuable, and crucial, patient and carer expertise is for designing services.

A representative for LongCOVIDSOS said: “The experience we had with the Patient Insight and Involvement team was hugely positive and particularly welcome at a time when no one else seemed willing to listen to Long COVID sufferers like us.

…being listened to with compassion can really make all the difference and we are absolutely delighted that the team’s recommendations have been taken on board by the London Clinical Advisory Group. This is a really positive development which we hope will allow Long COVID sufferers to get the support they so desperately need

Representative for LongCOVIDSOS

For any further information, please contact the Patient Insight and Involvement team on PPIE@uclpartners.com