'Five years of Long Covid and my symptoms are worse'

As 18-year-old Molly Foden walks along the beach near her home she tells me what it has been like living with Long Covid for five years.

"I get a lot of dizziness, I'm very fatigued, and I have a lot of body weakness and pain," she says.

There are no official figures for the number living with the condition but the charity Long Covid Kids estimate if affects thousands of children and says it has supported 11,000 families during the past six years.

Molly says she has learnt to live with the symptoms. It is a year since I last met her in Weymouth, Dorset, and in that time she tells me the condition has worsened.

"I've had a lot of stomach trouble, food not digesting, a lot of sickness and pain which meant I was in hospital for two months plus.

"No one knew what to do with me, no one knew what was wrong. It was really hard."

The challenge of "no one knowing what to do" with patients affected like Molly is a familiar story among children and young people with Long Covid.

And the Dorset-based charity says there is still no effective treatment for the condition.

According the NHS, Long Covid, which is sometimes called Post-Covid syndrome happens when the symptoms of Covid-19 last longer than 12 weeks.

The NHS says the most common symptoms include fatigue, shortness of breath, joint pain and aching muscles and problems with your memory and concentration, which is also called brain fog.

But patient experiences of the condition vary and many report a wide range of debilitating symptoms.

Molly caught Covid in September 2021 and her symptoms never fully went away.

Before, she was very active. Sports played a central role in her life and she loved to swim, play hockey and participate in surf lifesaving.

It was Molly's goal to become a lifeguard on Weymouth beach.

Long Covid has meant she has been unable to do all these activities. She has been unable to attend school. She can manage an hour or two of education a day but it has affected her family and social life.

Molly says she has developed persistent fatigue, recurring fevers, pain, and a range of complex conditions, including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS).

Her fatigue has been so bad she has often had to rely on a wheelchair to get around.

She described how the condition has made her "closed off from friends, from school, from anything".

Molly used to be cared for by a dedicated paediatric Long Covid clinic called the Dorset Post Covid Syndrome Service but that closed for children in November 2023.

Since then she says it has been a struggle to get help for the condition.

She says: "I've been turned down from a lot of [NHS] services, because I am too complex. There's too much going on so they can't help one specific thing because they don't know what the others are.

"It's a real struggle to try get the help I need."

NHS Dorset says there is no a dedicated post-Covid service for children with Long Covid and referrals are made through the local paediatric services.

It adds that: "The paediatric service will review the patient and associated symptoms and may make onward referrals as appropriate, such as to the chronic fatigue service."

Molly says she has received care under a chronic fatigue service, but in the absence of NHS help for all her Long Covid symptoms she says she has had to go to a private clinic in Liverpool.

Molly's mum Laura says: "It's a battle you feel like you are constantly fighting for her, fighting a system that works in silos that doesn't communicate within the health service.

"You just don't know where to turn, you don't know where to find the right information to enable her to get better."

For more than six months I have been talking with families, patients and Long Covid Kids who are fighting to keep this debilitating health condition in the public eye.

Despite a diagnosis of Long Covid, parents have told me the NHS is not helping them. They say there is no ring-fenced long-term funding, training for clinicians or a national approach to care.

In some cases I have heard that some young people have been discharged from NHS care and their families have been told there is nothing more that NHS services can offer them.

Parents are all calling on the government to act by funding more research into treatment and a consistent approach by the NHS that would give all children the same level of support across the country.

In the absence of effective or accessible NHS help, parents say they have been forced to find their own care, taking children to costly private clinics which many say have been a lifeline.

They tell me their children are taking "off-label" medication, which are approved medicines for other conditions.

They are prescribed by registered doctors for Long Covid in an attempt to manage particular symptoms and improve quality of life. In some cases this has been successful.

I have heard time and again about the impact on family life.

It is hugely disruptive. In some cases parents have become full-time carers. Some have had to reduce or give up work and homes have been adapted to manage their children's disability.

Some parents have heard of good outcomes for children outside of the UK.

Parents I have spoken to who tell me they have run out of options in the UK and are considering attending clinics in Europe.

These can cost of tens of thousands of pounds, with no guarantee that the treatments being offered will be successful.

One mum I have spoken to has taken her daughter to Beijing where she hopes Chinese medicine will make a difference.

A Department of Health and Social Care spokesperson says it recognises the "very real impact" of Long Covid.

They add: "We are funding research specifically focused on Long Covid in children and young people, including the £1.9 million CLoCk study, jointly funded by the National Institute for Health and Care Research and the Medical Research Council, alongside other research investigating its neurological impacts.

"Long Covid services, commissioned by local NHS organisations, should be offered to support people and where local services are not available, people with symptoms should visit their GP, who can then refer them to alternative services based on clinical need."

Children like Molly have missed years of education and opportunities.

Despite the illness, she has achieved two GCSEs and has ambitions to one day become a vet.

She told me why it was important for her to speak out: "I'm doing it for the people who really can't. I know there are people who are stuck in bed 24/7.

"I want to advocate for those people who can't. I want to make our voices heard to the doctors, to the MPs to the government, to everyone."