Dorset teenager with Long Covid says her health is getting worse

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 based on medical evidence and the individual’s needs and health conditions 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.