2020: Advice and support for people living with Long COVID

  • 8th December 2020

Last week, Patient Safety Learning’s Chief Executive, Helen Hughes, gave an overview of some of the patient safety issues we’ve focused on this year. We then published the first of five mini blogs, looking at one of these key areas, namely the impact of the COVID-19 pandemic on patient safety.

This week, we turn our focus to Long COVID. Long COVID is a condition where people experience debilitating and sometimes severe symptoms for more than 12 weeks following confirmed or suspected COVID-19, and where their condition cannot be explained by an alternative diagnosis.

As an additional option to the text below, you might like to watch the following short video from Samantha Warne, Editor of Patient Safety Learning's the hub:

Raising awareness of Long COVID through the hub

We first started hearing about Long COVID in June, through our patient safety platform, the hub, and other media. After making contact with the Long Covid Support Group on Facebook, we interviewed a member of the group, Barbara Melville, about her personal experience of Long COVID. Around the same time, we began a Community discussion on the hub, asking Long COVID patients whether they felt they were receiving the right support.

In July, we shared intensive care doctor Jake Suett’s personal experience of Long COVID. His story has been the most popular page on the hub ever, still today receiving hundreds of views each month. Jake’s blog included actions for the Government to take and a template letter for people to use to contact their MP and encourage them to take action.

Also in July, we wrote our first blog on the subject. It highlighted the patient safety concerns for Long COVID patients, outlined our key areas of concern and suggested actions we thought were needed at a leadership level. One of these was for the Department of Health and Social Care to establish a Long COVID patient advisory group.

We continue to use the hub to highlight patients’ experiences and concerns, and work with others to seek support for the actions raised.

Using our insights to inform engagement with the NHS

In September, there began to emerge growing confusion around one specific element of support for patients – proposed Long COVID Clinics. This followed Matt Hancock MP, Secretary of State for Health and Social Care, stating in parliament that the clinics were already up and running, despite there being no publicly available information to this effect.

We started a new Community topic on the hub, asking people whether they had any information about Long COVID clinics. We then wrote a letter to Chief Executive of the NHS, Sir Simon Stevens, calling on him to take steps to publicise the locations and details of Long COVID support clinics.

In October, Stevens announced a five-point package to support Long COVID patients, and our Chief Executive, Helen Hughes, was asked to join the Long Covid taskforce to advise on the implementation of the NHS England and NHS Improvement plan to support patients living with this condition. As an active stakeholder of this group, we have been feeding back the concerns patients are sharing with us directly and using what we learn from them to inform our input on draft guidance around Long COVID, such as guidelines being developed by the National Institute of Health and Care Excellence (NICE).

Using our insights to inform engagement with patients

In November, we worked with the Royal College of GPs (RCGP) to produce a leaflet for patients to understand the support they can expect from their GP (based on guidance by the RCGP to GPs).

At Patient Safety Learning, one of our six foundations for safe care is patient engagement – we believe it is vital for patients to be actively engaged throughout the care process and whenever things go wrong. This is our motivation behind working with the RCGP to produce a leaflet exclusively for patients, providing them with an evidence-based document that can be shared with those around them. We believe that there is a need for more patient-focused information for people living with Long COVID and that this type of guidance should be provided by the NHS.

At the same time that we published the leaflet on the hub, we also published a new Long COVID blog on our website, outlining some of the key patient safety issues and the need for a clear plan from the NHS for engaging and communicating with Long COVID patients regarding the roll-out in support for them.

Our plans for the future

As the number of COVID-19 infections continues to increase, it is to be expected that more and more people will suffer from Long COVID. Looking ahead to 2021, we will keep using the hub, other communication channels and our networks to raise awareness of Long COVID so that patients are better supported in accessing safe, quality care.

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