Mother of girl with long Covid hopes others will join legal action against NHS board

It is thought to be the first case of its kind in Scotland

Helen Goss, from Westhill, Aberdeenshire, with her eleven-year-old daughter Anna Hendy. Anna suffers from long covid.

A mother whose child has spent nearly four years suffering from long Covid says her legal action “is a shot across the bow of the Scottish Government”, and hopes other families will join her in taking health boards to court.

Helen Goss, whose 11-year-old daughter Anna Hendy has been left “pretty much bedbound” by long Covid, wants fellow sufferers to “take aggressive action to force the Scottish Government to act urgently”.

Anna first contracted coronavirus in March 2020, during the first wave of the Covid-19 pandemic, leading to nearly four years of symptoms, including “extreme lethargy” and “psychotic breaks”.

Anna now suffers from the debilitating symptoms of long covid

At her worst, Anna suffered from PANS - paediatric acute-onset neuropsychiatric syndrome - which is characterised by a sudden onset of neuropsychiatric symptoms including obsessions/compulsions or food restriction.

“PANS is a misdirected immune system response to an infection, it causes inflammatory responses everywhere in your brain,” said Ms Goss, from Westhill, Aberdeenshire.

“She would have psychotic breaks, and be very dazed after. She was extremely fatigued. It was very clear that something very wrong was happening, we just didn’t know what.”

Anna has since contracted Covid-19 three more times, with worsening severity.

Anna first contracted coronavirus in March 2020, during the first wave of the Covid-19 pandemic, leading to nearly four years of symptoms, including “extreme lethargy” and “psychotic breaks”.

Ms Goss claims NHS Grampian, her local NHS health board, has refused to refer Anna to specialist services. She is now taking legal action against the health board, alleging a number of failings.

“The services, the specialists she needed to see, flat out said ‘we’re not seeing her’ and I still don’t know why. I put in a complaint after two years. I wanted to know why paediatric neurology and paediatric immunology wouldn’t see her.”

The action, filed by Ms Goss’ legal representatives Thompsons Solicitors, says these failings "could have been avoided had NHS Grampian followed contemporary guidance on diagnosis and treatment", and that NHS Grampian’s "breaches amount to negligence at common law of which damages are claimed”. It is thought to be the first case of its kind in Scotland.

When asked whether children are being refused treatment by NHS Grampian, the health board refused to answer, citing patient confidentiality.

"We cannot comment on individual patient cases,” a spokesperson for NHS Grampian said.

"A long Covid pathway of care for children has been designed with the input of those with lived experience of the condition and is in the final stages of development, along with a new website for families.

"NHS Grampian has a Long Covid Project Board and a Long Covid Paediatric Steering Group which help to inform our work.

“We also now have a paediatric long Covid practitioner as well as a paediatric clinical lead for long Covid. Children who are suffering with symptoms are managed by the appropriate clinicians according to their needs.

"The team is always happy to hear from those who have experienced long Covid, as well as parents and carers, regardless of the severity of their symptoms."

Ms Goss said she “really hopes” other families and sufferers take legal action against health authorities and the Scottish Government.

“This legal case is a warning shot across the bow of the Scottish Government that I am not going to stop until every single child with long covid has the health care and education that they are entitled to

“I’ve had so many meetings with them. They know exactly what the issues are. We’ve talked about since 2021, several times a year.”

Ms Goss says she had “plenty” of meetings with Humza Yousaf during his tenure as health secretary, but has since “dropped us like hot potatoes” since becoming First Minister.

A spokesperson for the Scottish Government said it “would not be appropriate” for the Scottish Government to comment on live legal proceedings.

“We take the issue of long Covid very seriously and recognise the impact it can have on the health and wellbeing of those most severely affected,” the spokesperson said.