In December 2021 and following discussions with the UK Medical Expert Committee which comprises 21 Medical and Allied Health Professionals across the UK, we agreed to send a Freedom of Information request to each Clinical Commissioning Groups (CCG) and Health Board in England, Wales and Scotland.
This project aimed to explore issues reported by NHS clinicians and the FND community regarding access to treatment for people with FND. Anecdotal feedback was that some CCG’s / Health Boards exclude people with FND from accessing physiotherapy, occupational therapy, speech and language therapy, and/or psychology. A common reason given is that they are not commissioned to treat this condition. Following discussions, FND Hope UK reached out to all CCG’s in England and Health Boards in Wales and Scotland to determine the following questions
- Does your commissioning agreement within your CCG include treatment for Functional Neurological Disorder?
- Can you please confirm that the commissioning agreement within your CCG provides each of the following services and that people with FND are eligible to be referred and receive this treatment:
- Neurological physiotherapy
- Neurological occupational therapy
- Speech and language therapy and
- Psychological therapies
We contacted a total of 126 CCG’s/Health Boards during December 2021 with FOI requests.
- 105 CCG’s in England
- 7 Health Board in Wales
- 14 Health Boards in Scotland
Functional Neurological Disorder (FND) is one of the commonest reasons for people to see a neurologist. It is a condition that can cause a wide range of symptoms such as paralysis, seizures, tremors and loss of sensation. Historically it has been a marginalised illness, often falling down the gap between the artificial divide between neurology and psychiatry, with patients often told that symptoms are not real or imagined. However, FND remains a serious and often long-term condition, with levels of disability and impaired quality of life similar to that seen in people with MS or Parkinson’s disease.
Set against this challenging background, there has been a remarkable increase in patient, clinician and academic activity and engagement in FND over the past 15 years. This has led to new insights into the pathophysiology of the condition, new evidence for successful treatment, development of an international health professionals’ society and development of national and international patient charities. This work has continued to highlight the health inequalities faced by people with FND, especially in access to treatment.
We recently surveyed, through a Freedom of Information request, all of the Clinical Commissioning Groups and health boards in the UK as to their current provision of multidisciplinary rehabilitation for people with FND, as well as if they had active plans for developing or expanding services.
We found that:
- 50% of UK health boards / CCG’s had no specific agreement to treat FND or did not treat FND, and almost 10% say that they do not accept referrals for treatment
- Between 14% (England), 21% (Scotland) and 43% (Wales) of services said that they did not accept physiotherapy referrals or provide physio for FND. Less than half (43%) said they had neurological physiotherapy services which would accept people with FND.
- Between 22% (England), 21% (Scotland) and 43% (Wales) of services said that they did not accept occupational therapy referrals or provide occupational health for FND and less than half (41%) said they had neurology based occupational therapy services which would accept people with FND.
- Between 17% (England), 14% (Scotland) and 43% (Wales) of services said that they did not accept speech and language therapy referrals or provide speech and language for FND and only 39% said they had neurology based speech and language therapy services which would accept people with FND.
- Between 16% (England), 29% (Scotland) and 43% (Wales) of services said that they did not accept psychology referrals or provide psychological therapy for FND, whilst 42% said they would accept people with FND.
- Only 35% said they had plans to improve their services for people with FND and only 35% said they were potentially interested in accessing further education or support to improve services.
This survey highlights the current patchy and inequitable provision of rehabilitative services for people with one of the commonest causes of neurological disability.
To read our report click here