Health Professionals join our call for additional Long Covid action

Our newly published Long Covid Action Plan urges Scottish Government to tackle the bureaucracy hindering the vital next steps to improve care for people in Scotland.

Leading health professional bodies in Scotland have joined together with Chest Heart & Stroke Scotland to urge the Scottish Government to take action and improve access to care and support for people living with Long Covid.

Working with Royal College of Occupational Therapists, Chartered Society of Physiotherapists and Queen’s Nursing Institute Scotland (QNIS), we have published a Long Covid Action Plan which outlines the next steps that need to be taken to make sure the 74,000 people living with Long Covid in Scotland get the vital support they need.

In February, the Scottish Government funded the creation of the Chest Heart & Stroke Scotland component of a national Long Covid Support Service which was an important first step in helping the thousands of people struggling with Long Covid.  The service provides one-to-one support for up to 12 weeks, helping people with common symptoms such as fatigue and breathlessness.  But further work is required to implement a robust referral pathway from NHS systems to ensure that everyone who could benefit from the service is made aware they can access it.

Without leadership from Scottish Government, it is feared that thousands of people will continue to miss out on the support they desperately need, leaving them struggling with symptoms like breathlessness, fatigue, heart palpitations and ‘brain fog’ which are amongst the most typical symptoms of Long Covid.

The charity is publicly raising concerns that a major hurdle to innovation and joint working between NHS and third sector is “damaging bureaucracy’, and the Long Covid Action Plan sets out four critical challenges which need to be addressed:

• Care needs to be integrated, with referrals from NHS into charity support (CHSS) underpinned by effective data sharing
• Training and awareness-raising is needed so that health professionals understand Long Covid guidelines and how to refer people to the support available
• There needs to be more consistent treatment and support, with patients being provided with a personalised Care Plan, and guidance for allied health professionals
• There needs to be more resources for Long Covid services, with the creation of a Long Covid Capacity Fund by the Scottish Government, which Health Boards can access

Jane-Claire Judson, Chief Executive at Chest Heart & Stroke Scotland, said:

“The joint funding between Scottish Government and Chest Heart & Stroke Scotland was a hugely welcome first step in delivering support for people living with Long Covid, and we have been working hard to establish the service, which provides holistic, non-medical support.  But it is only part of the solution, and national action is urgently needed to tackle several challenges to ensuring that everyone receives the right help.

“Damaging bureaucracy is proving to be a major hurdle between joint working with the NHS and the third sector, meaning health professionals aren’t able to refer their patients directly to us for support.

“No one benefits from this lack of a co-ordinated and consistent approach and it means thousands of people are missing out.  We welcome the health professional bodies that have come together collectively on our Long Covid Action Plan as there is much work to be done.   We need to draw together expertise from across our professions to provide the holistic care that is required to make sure we can get the right support in place for people living with long covid.

“Everyone is ready and wants to play their part in helping people with long covid but we need national leadership to make it all come together.”

Alison Keir, Professional Practice Lead – Scotland, Royal College of Occupational Therapists

“Across Scotland, occupational therapists alongside other AHPs have been in the frontline of the healthcare response to COVID-19. The Royal College of Occupational Therapists (RCOT) fully support CHSS in their call for increasing access to multi-disciplinary, cross sector, support for Long COVID. With a tsunami of need for rehabilitation services now evident, we are advocating for timely rehabilitation to enable people to regain their independence, the skills to do things they have and want to do and to live their best lives.”

Sara Conroy, Professional Adviser for Scotland, Chartered Society of Physiotherapy

“The CSP welcomes the Long Covid action plan developed by CHSS. The complexity of Long Covid involves symptoms such as fatigue, breathlessness, anxiety, neuropathic pain, autonomic system dysfunction, cognition, balance and mobility issues, reflux, and more. It requires a fully multidisciplinary approach for both physical and mental health, and a joined up plan to support people. Services are trying to innovate but are struggling to find funding, while long waiting lists continue to grow. A Scottish Government plan to address this issue is urgently needed to deliver targeted action.”

Clare Cable, Chief Executive and Nurse Director of the Queen’s Nursing Institute Scotland (QNIS)

“We support the call for a system to help nurses working in a wide range of roles within communities in Scotland to enable easy referrals for people with this complex condition. We hope this Long Covid Action Plan will be part of finding solutions to challenges in making services accessible to all while supporting health and care workers in the community to provide appropriate care.”

Mairead’s story

Mairead Johnson, 58, lives in Greenock with her husband Henry, 62. The couple contracted Covid-19 in late December 2020 and both are now suffering the effects of Long Covid.

“A month after our positive tests, we were both still floored by it. I’ve had flu before, but this wasn’t flu. We just lay for hours on end, me on the couch and him on the bed. The only thing that got us up was having to let our dog Betty out on to the balcony.

“Henry began to notice that after he’d been awake for a while, his head would feel as if it was swollen, his throat became constricted, and he got brain fog. He’s a little better now, but he still gets very breathless, and his heart has started racing. He has pain in his hips, too.

“I have permanent joint pain in my foot; and I also have breathlessness and my heart is constantly racing.

“Weird things are happening to our bodies –but we don’t feel we can constantly go to the GP and report on every new odd symptom.

Thankfully the pair have found vital support in Chest Heart & Stroke Scotland’s Long Covid Peer Support Group. ​​​​​​​

Mairead said, “The Peer Support Group has been very helpful because we are all sharing our symptoms and how we are feeling. Every time you have something else wrong, you wonder if it’s Long Covid, and being able to share that with other people who are going through the same thing is so helpful.”

Find out more about our Long Covid Action Plan: chss.org.uk/long-covid-action-plan