The sister of a woman with severe myalgic encephalomyelitis (ME) is calling on the government to adequately fund its plan to overhaul care for patients with the debilitating disease.
By Anna Varle, BBC South West health correspondent
Extracts
Rosie Barrett, 30, of Budleigh Salterton, Devon, helps care for her sister Alice, 27, who has been bedbound for three years and is unable to eat properly.
The government said it would publish a final delivery plan to help ME sufferers by the end of June.
However, health minister Ashley Dalton told Parliament in February there were no plans for additional funding, which has left Rosie and other campaigners disappointed.
How can you deliver a plan with no money assigned to it? I'd like the government to assign money to the plan so they can start progressing training in the NHS.
Rosie Barrett (Alice's sister)
Alice requires 24-hour care, has a catheter and is fed via a feeding tube.
She is intolerant to sound and smell, wears earplugs around the clock and must be in a darkened room.
A report by the University of Exeter, which is based on findings from a 2023 survey conducted by the ME Association, found significant improvement in the diagnosis and care of ME and long Covid was urgently needed across the NHS and social care settings.
BBC Radio Cornwall covers ME/CFS and discusses the DHSC delivery Plan (11.04.25)
James Churchfield's programme has a segment from Radio Cornwall's health correspondent where she talks to the family of Alice Barrett who is severely affected.
Dr Charles Shepherd (MEA Hon. Medical Adviser) then talks to James Churchfield about concerns and disappointments regarding lack of funding for services and research in the DHSC Delivery Plan.
Listen to the broadcast on the MEA's YouTube: