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Long COVID in Scotland: NHS Trust Accused of Medical Negligence

The family of a child suffering Long COVID claims they have faced ‘medical gaslighting’ and been consistently denied NHS care

Anna, whose family have launched a legal challenge against NHS Grampian for failures in her treatment for Long COVID. Photo: Helen Goss

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Authorities in Scotland are facing increasing criticism from Long COVID sufferers, including a landmark legal case challenging the failure of authorities to provide adequate care.

In December, Thompsons Scotland solicitors formally notified NHS Grampian on behalf of the family of Anna, a child suffering with Long COVID, of their intention to pursue legal action against the health board. In January, it issued a formal letter informing NHS Grampian of the decision to initiate legal proceedings for damages stemming from medical negligence.

UK Long COVID charities have also issued a joint statement criticising a guidance update by the Scottish Government on the NHS Inform website, via the official @scotgovhealth X channel (formerly Twitter).

The groups Long COVID Kids, Long COVID Scotland, Long COVID SOS, Long COVID Support and Long COVID Physio argue they are unable to support the guidance in its current form as it downplays “the challenges encountered by individuals grappling with the persistent effects of SARS-CoV-2” causing “widespread distress within the Scottish, UK, and global Long COVID community” and leaving “many feeling invalidated or gaslit in their ongoing struggle to receive fundamental care”.

The guidance update demonstrates some of the issues raised by Long COVID Kids Scotland in its opening statement as a core participant to the COVID inquiry’s module on Scotland’s pandemic response. It said that “the absence of high quality and biomedical paediatric research” had led to “poor outcomes for children and young people”.

The children represented have struggled to have their conditions recognised. Those who have, have been offered cognitive behavioural therapy (CBT) and graded exercise therapy (GET).

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CBT may be supportive but it does not address the underlying pathology of what is a physical condition. GET is a programme of gradually increasing physical activity levels used as a treatment for ME and chronic fatigue syndrome (which have similarities with the symptoms experienced by many with Long COVID).

However, GET is not recommended as a treatment for ME or chronic fatigue syndrome or Long COVID in the current NICE guidelines, and there is evidence that GET can worsen conditions.

Anna has had Long COVID since March 2020. After almost four years, her family feels they have exhausted all avenues within NHS Grampian, having faced “medical gaslighting, dismissal and consistently been denied NHS care”.

Anna’s family told Byline Times how when they highlighted NICE guidelines to a physiotherapist after Anna had been put through a 30-minute gym session, they were told “if you won’t accept GET then there is nothing I can do with you”.

Their legal letter to NHS Grampian states that the health board also exhibited a lack of seriousness in addressing their formal complaint, attempting to close it without resolution on four separate occasions.

The health board is accused of denying necessary treatment and care, resulting in medical negligence causing additional harm and trauma to Anna and her family, which has incurred substantial expenses on medical care and treatment within the private healthcare sector.

The goals of the legal action are to hold NHS Grampian accountable for its failures and inaction by way of a formal apology and for the Scottish Government to promptly overhaul its approach by introducing improved clinical protocols for children and young people with Long COVID, including implementing comprehensive training and upskilling initiatives for paediatric clinicians.

Anna’s family feels progress in care is “moving at a glacial pace”, while Scotland’s children continue to be dismissed and ignored in a “callous manner”.

This sentiment is echoed in the statement from Long COVID charities in relation to the guidance released on the NHS Inform website.

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The statement expresses concerns regarding the failure to include “references to cardiology, neurology, and immunology, despite documented symptoms” which “may inadvertently imply Long COVID is primarily psychosomatic”. This is an implication that contradicts published research with evidence of cardiovascular, neurological, and immunological involvement.

The statement also argues that the guidance disregards treatment for symptom management by “conveying a potentially harmful message” on the use of GET without proper screening for post-exertional malaise and/or post-exertional symptom exacerbation. The charities’ statement argues that “people living with other life-altering conditions are not typically prescribed Pilates or gardening as treatments”.

The Scottish COVID Inquiry has heard that, as of May 2022, it was believed there were more than 10,000 children in Scotland suffering from Long COVID which has caused neurological, musculoskeletal, gastrointestinal, and cardiovascular symptoms, and serious cognitive impairment.

The Scottish Government has not explained how £10 million of support funding was spent, and it does not appear that Long COVID cases are being tracked. Unlike in England, Scotland did not establish dedicated paediatric Long COVID hubs, (although concerns have been raised south of the border regarding some of the English hubs).

The inquiry has heard of a lack of flexibility in the education system to provide for students with unpredictable attendance due to the waxing and waning of symptoms that many with Long COVID experience.

The financial impact to families, particularly when the child is unable to obtain a diagnosis, was also explained to the inquiry. Families face loss of earnings due to caring duties while also being unable to access social care services and financial support for items like mobility aids.

This first legal case of its kind in the UK will be followed with keen interest by the thousands of people in similar situations. According to the Office for National Statistics, there are currently more than 60,000 children with Long COVID in the UK.

Authorities have yet to respond to the legal letter.


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