The Wait Goes on

Parents and guardians of children living with ME/CFS and Long Covid face a further wait for access to treatment services.

Health Minister Rob Callister has said in a memo circulated to Tynwald members the service will require working with Liverpool’s Alder Hey Hospital.

During the October sitting of Tynwald, Garff MHK Daphne Caine asked Mr Callister for further info on the service and how it would aid under 18s.

Mr Calliser said: ‘ME/CFS and Long Covid services for Children was outside of the initial scope of the business case however, we recognise there is a demand in this area. We are putting together a separate business case for provision of children’s services, which will rely more heavily on input from specialists from Alder Hey, which will go through the Marx Care business case governance process in Q3 22/23.’

There are currently just under 800 people that the DHSC believes are living with either ME/CFS or Long Covid.

Mr Callister added: ‘We have 65 current referrals in the systern who are being triaged, and initial assessments are planned. There are four referrals for under 185, which currently cannot progress through the triage due to lack of trained staff on island or established referral pathways to tertiary care.’

On parent who spoke to Gef said: ‘We went through a horrible & anxious time 30 years ago when our daughter had ME/CFS. I can’t believe it has taken so long to see meaningful changes to health care. We hope this will include paediatric care with a knowledge & understanding of ME very different from the, dogmatic, dismissive & damaging treatment suffered then. Thank you to those who have fought so hard for this service though they have been so ill themselves.’