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In May the Government committed to (subject to Spending Review decision) improving health outcomes for people with long-term conditions, and for the first time, this will include functional neurological disorders (FND). This will be welcomed by medical and legal professionals alike as it signals the possibility of developing clinical pathways for FND and its inclusion in the National Service Framework (NSF) for Long-Term Conditions – paving the way to access to much-needed specialist care and funding across the country.
Despite the number of people diagnosed with FND, a condition that causes symptoms including seizures, movement disorders and sensory disturbances, rising year on year, only 21 of the 215 Integrated Care Boards (ICB) currently fund treatment and have a clear treatment FND pathway.
Often triggered by trauma with no identifiable structural cause in the brain or nervous system, FND is frequently misdiagnosed and stigmatised as not as ‘genuine’ as other neurological disorders such as stroke or measurable brain injury.
Greater recognition of FND could also help legal professionals looking for future NHS funded care packages. While there are no guarantees that FND will be included in an NSF and ensure specialist FND funding within every ICB, it’s likely provision will increase, and more NHS funded packages will become available.
And funding is always a key thing. Throughout my 22-year career as a Neuropsychologist and now Director of Clinical Services, medico-legal professionals always want to know what funding is available and how long treatment will take.
Funding
In reality, funding associated with an FND NSF won’t be without its challenges. Not least in the fact that suggested guidelines by NICE to standardise rehabilitation treatments, expected this September, will focus on holistic levels of care including psychological support.
The suggestion that multidisciplinary teams should be created incorporating psychology, physiotherapy, occupational, speech and cognitive therapies within regions will prove difficult due to workforce challenges and organisational costs. Multidisciplinary teams are essential to pathway development yet in short supply, especially the Neuropsychologists needed for disorders such as FND.
But there are other current funding routes. The NHS’s Continuing Healthcare (CHC) care package can be used to meet the needs of patients with FND. In order to receive funding, individuals have to be assessed by a legally prescribed decision-making process to determine if they have a primary health need.
Covering everything from mobility and cognition to breathing and nutrition, understanding and applying the weighting to each category can be complicated, especially with FND patients facing varying degrees of symptoms. Those who are discharged from hospital into inpatient services are often more likely to receive CHC funding because their symptoms are more severe and they score highly in many of the assessment categories.
The greater challenge is for those wanting
out-patient support where they might only have ‘high’ needs in 2 of the 11 categories. An outpatient service can have a lower long term cost implications, so this is where we can support legal professionals in interpreting the decision-making process to ensure the best funding route for their client.
Timeframes
Timeframes are trickier but we all share the same aim of supporting patients to return to better health as quickly as possible, thus returning independence and self-determination for the individual as the core tenets of rehabilitation in shortest time possible.
Whether inpatient or outpatient, the benefits of bringing together practitioners from across the disciplines is the key to success. Reduced waiting times for referrals and appointments, reduced treatment costs and most importantly better and quicker outcomes for patients as teams talk, amend and tailor treatment accordingly.
The expansion of provision
In response to the lack of provision for the 50-100k people affected by FND in the UK we’ve recently expanded our inpatient service to outpatients, opening the door to greater numbers of referrals, particularly those living with long-term symptoms not severe enough to be funded as an inpatient and paying privately.
But for me and the rest of my team our aim is to be a torchbearer for FND, raising its profile and importance. Our knowledge, experience and best practice of multi-disciplinary care has never been more relevant, and we’ll continue to support the health sector to understand and implement future frameworks and guidelines.
To arrange a visit or referral please contact Robert Jones, PJ Care’s FND, Referrals and Placements Manager, at pjcare.referrals@nhs.net or call 07796713172.
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