George Bleakley addressed councillors via video link
“Why is there no provision? Why is there no plan? Why is there nothing for people with FND in East London? Do we not matter?”
George Bleakley, who suffers from functional neurological disorder (FND) posed these questions to councillors from Hackney, Waltham Forest and Tower Hamlets.
Speaking at a recent joint health scrutiny meeting for inner north London, Bleakley complained of his inability to receive treatment in the local area.
“FND is a neurological condition that’s just as debilitating as multiple sclerosis, Parkinson’s or epilepsy,” he said.
“And it is one of the most common diagnoses made in neurology outpatient clinics.
“You need a consultant, physio, cognitive behavioural therapist, possibly occupational therapy, and it helps to have a community neuro team too,” Bleakley explained.
“Do you know who already has these services? Barts and East London Foundation Trust.”
However, he said “the current long-term outlook for patients in East London is poor, with most remaining with long-term disabling symptoms.”
The reason, he explains, is that neither Barts NHS Trust nor Barking and Redbridge University Trust offers clinical pathways or specialist neurological treatment centres for FND patients.
While there is no cure for FND, it is possible to provide treatments that can radically change a patient’s life.
With the correct medical care, Bleakley, who is currently unable to work and uses a wheelchair, could walk and return to work.
Bleakley revealed that he attempted to take his own life in January this year.
“All this stress and trauma is preventable with the correct treatment,” he said.
“The people of East London with FND are being neglected, forgotten and left rotting to live horrible lives.”
Addressing councillors, he added: “You can change this.”
Ben Hayhurst, Hackney Central representative and chair of Hackney’s own health scrutiny commission, extended his sympathies to Bleakley and promised to look into why no treatment is being provided.
A spokesperson for NHS North East London told the Citizen: “We are grateful to George for sharing his experience of living with functional neurological disorder (FND) and hope to meet with him in person so we can better understand his concerns and ensure he has access to the treatment and support he requires.
“We will also carefully consider the issues he has raised as we assess service provision for people with FND in north-east London.
“We will report back to the scrutiny committee on this in due course.”
https://www.hackneycitizen.co.uk/2024/05/24/man-functional-neurological-disorder-plea-better-treatment-north-east-london/
