Dear Matt Hancock,
Petition: Increased funding for multi-disciplinary treatment centres for FND patients
FND Action public response in reference to the Government’s reply posted on 29th April 2019
We write to you in relation to the above. Whilst FND Action wasn’t involved in setting up the petition, we fully supported its sentiment and it was shared many times by members within our online patient support groups. Along with everyone else involved, we were very disappointed in the government response.
Some of the barriers people diagnosed with a Functional Neurological Disorder have had to face include not being believed, being accused of faking or being told that the condition is solely as a result of childhood trauma. The determination of people diagnosed who speak out and refuse to be dismissed, and the advancement of understanding by the handful of professionals who have taken interest in the condition, has shown these old ideas are false.
Prevalence of symptoms, severity of symptoms and understanding that symptoms can be treated/managed with appropriate care has for years not been taken seriously or acknowledged.
Functional Neurological Disorder needs to be acknowledged as a diagnosis in its own right, as it can be diagnosed from positive signs/tests, and not just be lumped in under the MUS (medical unexplained symptoms) umbrella. It is essential that the NHS is given the support and funding needed to provide a multi-disciplinary care pathway.
MUS is a ‘catch-all’ group of symptoms, not a specific diagnosis, for any symptom for which clinicians cannot find an identifiable physical or biological cause of from commonly-known medical conditions. For those diagnosed with a Functional Neurological Disorder; being placed in this group has led to inappropriate medical prescribing, unhelpful treatment, overuse of emergency care, misdiagnosis, other less-common health diagnoses not being explored and, in many cases, long-term disability.
The prevalence of Functional Neurological Disorder symptoms in adult care is being locally reported by some clinicians as around 1 in 3 outpatients in Neurology clinics and 1 in 6 in Epilepsy clinics, and can also co-exist with other Neurological conditions. Prevalence of symptoms in paediatric care is unfortunately less reported and we believe this is due to many children/adolescents receiving inappropriate, or insufficient, care under CAMHS alone.
FND Action’s stance is that a Functional Neurological Disorder is primarily a neurological diagnosis due to the presentation of symptoms, and care should therefore be headed by a Neurologist. However, psychological intervention also needs to be considered as does appropriate physiotherapy, occupational therapy, speech therapy etc.
We believe that a multi-disciplinary approach is the best way for a person diagnosed to receive the help and support they need to recover from symptoms, and/or their symptoms become more manageable.
We are extremely disappointed that the Department of Health and Social Care have not sourced current information relating to FNDs, and many factors noted are incorrect or disputed. Such as, but not limited to:
• FND is not a diagnosis of exclusion but a diagnosis given from positive signs.
• There is currently no recorded prevalence of FND within the population.
• It is misleading by highlighting only CBT as a treatment option, when specialist physiotherapy and occupational therapy are proving to be more successful forms of treatment.
• FND services are restricted, or indeed non-existent, in many areas and should be addressed by the Commissioners.
The DHSC’s response makes reference to the NICE (National Institute for Health and Care Excellence) guideline ‘Suspected neurological conditions’, which has since been published. This guideline covers the initial assessment of symptoms and signs that might indicate a neurological condition. The guideline covers England alone.
Sadly, the guideline does not identify a pathway for patients who first present with suspected Functional Neurological Disorder symptoms. As stakeholders, we are appalled that Functional Neurological Disorder has merely ended up on a page titled ‘Terms used in this guideline’, with a rule-out explanation of the ‘term’. This was not presented on the draft guideline for consultation.
FND Action believe it is imperative that the Government take a national stance and guide the NHS into acknowledging FND as a diagnosis in its own right, provide unified positive diagnosis (under Neurology) and multi-disciplinary treatment pathways, and provide long-term patient and carer support whilst patients remain symptomatic. It is not fair, or acceptable, for those diagnosed to be treated differently based on where they live.
We will also continue to advocate Functional Neurological Disorder is not referred to under the MUS banner as it is a diagnosis in its own right, can be diagnosed from positive signs/tests by a Neurologist, and there are several treatment options that can be considered. On the NHS main website MUS is referred to as ‘persistent physical complaints, such as dizziness or pain, that don’t appear to be symptoms of a medical condition’. This does not reflect the diagnosis of Functional Neurological Disorders, presentation of symptoms, severity of physical disability and treatment options available.
It is commonly reported in the news about healthcare cuts, and the added pressure put on doctors and nurses to deliver services with stretched resources. Understandably this also puts pressure on NHS Commissioners to prioritise services. However, there is no price that can be put on a person’s health and wellbeing, and ultimately the long-term cost saving should the right treatment be available and accessible. If the Government want the economy to grow, they need to invest in care for the people who will help it grow.
Chief Executive Officer
On behalf of FND Action