Young people with long Covid 'battle' for NHS care

Young people living with debilitating symptoms caused by long Covid have described feeling abandoned and having to "battle" to access NHS support.

Kaylee, 17, a once promising gymnast who hoped to represent her country, developed the virus on her 12th birthday and still experiences symptoms including dizziness and shortness of breath, causing her to miss school and give up on the sport she loves.

Two million people in the UK have long Covid, according to the Office for National Statistics.

The Welsh government said it had increased the funding available to support people experiencing the long-term health effects of the virus.

Kaylee was a promising gymnast with hopes of representing her country before she was diagnosed with long Covid

Kaylee, from Cross Keys in Caerphilly county, vividly recalls being bed-ridden for three days when she was 12 after a sudden dizzy spell caused her to fall and hit her head.

She said doctors initially failed to identify the cause of her illness and she was not diagnosed until she was 13.

She said her symptoms included "dizziness, sometimes shortness of breath, there's sluggishness, there's pain in my chest and my ribs and I get brain fog sometimes".

Kaylee underwent tests in hospital when she was young to determine the cause of her illness

Kaylee's mum, Sarah, said the initial mental and physical support Kaylee received from their local health board's Post-Covid Recovery service was great.

But she said Kaylee had not seen a specialist NHS doctor for two years.

"I have tried to get in touch recently and didn't get a response," Sarah said.

"It's really disappointing, I think [the clinicians] think they did everything they felt they could do - that she's already been offered everything."

For the past five years, Kaylee's parents have been paying for her to receive specialist oxygen therapy in Bristol, which they said helped with Kaylee's breathing and energy levels.

"I never could have predicted that five years on we'd still be here and I still don't know when or even if she's ever going to fully recover," said Sarah.

Sarah said she thought there should be a "thorough investigation" into the cause of long Covid, "instead of just treating the symptoms".

"There's a real lack of research into how it affects children in comparison to how it affects adults and there's real lack of support for children," she said.

"I feel like we have no options here - it's been horrendous.

"We are five years in and I'm still having to see her in pain and missing out on things and worrying about how she is going to manage with her future."

Aneurin Bevan health board said it was sorry Kaylee's mum was unhappy with the care given.

It said it was launching a symptom management service on 1 April which would provide patients with personalised care. The board said there were already online resources available.

"Over the past 18 months, we have transformed our service to improve access and ensure timely support for children, parents, carers, and trusted adults in relation to long Covid," a spokesman said.

What is long Covid?

Most people who catch Covid feel better within a few days or weeks and most make a full recovery within 12 weeks, according to the NHS.

But for some people the symptoms can continue or develop for longer. This is called long Covid, or post Covid-19 syndrome.

The most common symptoms are extreme tiredness, shortness of breath, brain fog, heart palpitations, dizziness, joint pain and muscle aches.

There are no official figures in Wales for the number of young people with long Covid, but the Welsh government estimates around 94,000 children and adults live with the condition.

Bethan, 20, from Pontardawe in Neath Port Talbot, was 17 and just beginning sixth-form when she caught Covid in 2021.

She said she had all the "classic" symptoms of a heavy cold, but after two weeks did not recover.

Bethan, who has asthma, described barely being able to lift her head from the pillow for days at a time, and said her sixth-form attendance suffered.

Bethan, who was diagnosed with long Covid when she was 17, says she has had to "battle" to access NHS support

She was eventually diagnosed with long Covid but said it was a "battle" to access support, adding that because of her age she "fell between" adult and paediatric services.

With the help of her teachers, Bethan eventually secured a place at university.

She said her symptoms were still "up and down" and that she now regarded herself as having a disability.

"I get crashes where I'll have symptoms, possibly for a week, two weeks, or I could just get maybe one symptom a day - or I could get nothing," she said.

She said she was determined to succeed.

"I've always just had the attitude that I'm not going to let it stop me from doing what I want to do," she said.

Swansea Bay University Health Board said it was "very sorry" that Bethan felt she had not been properly supported through her illness.

A spokesperson said that as Bethan was now 20, she could be referred to the health board's long Covid adult clinic via her GP.

"We are continually gathering data on the effectiveness of treatments and asking patients for their feedback to help us develop new services and reshape existing services for the future," the spokesperson added.

The charity Long Covid Kids has called on the Welsh government to ring fence money for specialist long Covid services.

It said setting up a "surveillance scheme" could also help to accurately find out how many people are affected in Wales.

A spokesperson said: "The services that the GPs are referring into are mainly paediatric, so there are no doctors who are familiar with long Covid, no doctors who are able to put the pieces of the jigsaw together."

The Welsh government said it had increased funding to support people living with the long-term effects of Covid to £8m, which would be repeated.

"Health boards provide individual and tailored support for people of all ages with long Covid through the Adferiad (Recovery) Programme," a spokesperson said.

"The multi-professional and community focused services have been designed to align with guidance issued by the National Institute of Clinical Effectiveness (NICE)."