A new approach to diagnosing and treating Functional Neurological Disorder (FND), and related conditions such as somatic symptom disorder and chronic pain, is set to transform patient care and outcomes, with a pioneering partnership leading the charge to redefine traditional pathways.
Proclaim Care have collaborated with Brain & Mind to devise a new approach to, and a specialist rehabilitation pathway for, FND, with extensive clinical expertise and experience of supporting people with the condition combining to create the Functional Neurological Disorder Service (FND Service).
The service is set to revolutionise FND treatment and support from the earliest opportunity, replacing the traditional Immediate Needs Assessment with a joint diagnostic and rehabilitation assessment from Proclaim Care and Brain & Mind’s expert teams, with reports completed within 42 days. A fixed fee service is offered for the initial review and assessment.
The FND Service – for patients aged 16 and over – has been created in response to the growing need for new approaches to supporting people with the condition, with the condition becoming more widely acknowledged and understood, but NHS resources are becoming increasingly pressured in response to the demand and referrals often being made to the incorrect service.
Evidence suggests that with timely, effective treatment, two thirds of people with FND and related complex neuropsychiatric conditions will make significant improvement – but NHS waiting lists are currently around 12 months for the initial specialist assessment, with a similar waiting time expected again before specialist treatment can be accessed.
Clients of the service – which has been created in consultation with insurers, claimant and defendant solicitors – benefit from the significant clinical expertise of case manager Flora McMullon, who also has 25 years’ experience of neurological nursing, consultant neuropsychiatrist Dr Michael Dilley and consultant neurologist Professor Mark Edwards, founders of Brain & Mind.
As an established name in case management and rehabilitation management, Proclaim Care has supported clients with FND for many years, and its belief that something needed to change in this area was echoed by Brain & Mind – a unique service which brings together neurology, neuropsychiatry and specialist neurological and psychological therapies into holistic, client-focused care.
“It’s one of our passions to really drive forward the way in which we deliver case management services, and through this partnership with Brain & Mind we can really change the way in which we’re working across the industry,” says Neil Irwin, commercial director of Proclaim Group.
“The pathway we have created is a new and different way to achieve better outcomes for our clients. Case management hasn’t changed in a long time, and we are always trying to find ways to do things differently and to improve the industry through education – and we believe, working with Brain & Mind, this is going to be a really important addition for people with FND.”
The challenges in provision and recognition
While FND is not a new condition, the profile it now has is more of a recent occurrence. Through greater understanding of FND, driven by the work of Professor Jon Stone, Professor Alan Carson and Professor Mark Edwards amongst others, more is known about the condition and its impact.
“FND is something that has existed since the dawn of time, it’s probably not that much more common now than it ever was, but people are now labelling it in a more unified way,” explains Prof Edwards.
“It certainly used to be the case among neurologists that this became a diagnosis where they basically said ‘It’s not neurological, so you’ll have to go and see someone else’. But actually, this is someone presenting with neurological symptoms, so it’s our role as neurologists to do something about this.
“That led to work demonstrating how disabling this is, and how you see a similar level of impairment and quality of life as in Parkinson’s disease or MS. You generally see quite poor outcomes without treatment.
“But with that has come the need to understand the underlying problem of what is actually going on in the brains of people with FND and to understand how you integrate that with psychological and social understanding, looking at it in terms of brain health in general.”
But with this greater awareness has come the risk that FND is now regarded as a ‘catch all’ term for a number of conditions.
This can lead to patients being referred from service to service, trying to find the best match for the symptoms they experience, leading to what can be significant decline. Often, they can be directed down a brain injury pathway, which can have a detrimental effect.
“We have often seen people who have actually been made worse through conventional neuro-rehabilitation, because it has been conducted with the belief that their symptoms are all due to a traumatic brain injury,” says Dr Dilley.
“They will have had 18 months to two years of rehabilitation, either in a community setting or in an outpatient NHS neuropsychological rehabilitation setting, where the idea of brain injury has been perpetuated, that this is the root cause of things.
“This approach carries an important message to the patient, that this is irreversible structural damage; whereas FND is a change in the way your brain is working, it’s not about damage or degeneration.”
And for those referred between services, and particularly against the background of a legal claim, this too exacerbates their problems.
“This group of patients are frequently rejected by services, and may have a background in any case of difficult relationships and attachments. This can result in a very challenging and conflictual relationship with health and social care services,” says Dr Dilley.
“We often see cyclical patterns of healthcare contact, where people move between services and then go back to A&E, which leaves them feeling alienated and very unhappy.
“In the context of a claim, you have the accident in the background, which might be the cause of this problem, or may have made it worse. You’re being bounced around, and you can see why some of these symptoms become intractable. And the longer they continue, the harder they are to manage.
“The accepted dogma within the medico-legal profession that you can’t treat people once they’re engaged in a claim, actually, that’s not true for the majority – I’d suggest the sooner you get to sort them out, the sooner you’ll get to sort out the claim.”
From Flora’s background in nursing, as well more recently in her role as a case manager, she sees first-hand the disillusionment of patients who live with FND.
“From working in acute hospitals and looking after people who have not been given a diagnosis or else have had a really poorly explained diagnosis, I have seen them becoming more and more disabled because their condition is not being acknowledged, explained and managed properly,” she says.
“It’s a similar story in the community for people who have never really been given a diagnosis, who often develop progressively worsening disability and quality of life.
“Coming into rehab management, I’m passionate about getting an early diagnosis for people – if they’re going through lots and lots of services where they get poor outcomes, they become very distrustful of healthcare professionals because they feel they’re not acknowledged, or they have been brushed aside or dismissed as there problems being ‘all in the mind’.
“But there is the opportunity for some really positive gains. And that is what my role as a case manager is about, having a relationship with someone so they know you understand them and you believe them.”
While NHS waiting lists are hugely challenging – with expected waiting times of 12 months for an initial assessment, and then another 12 months to access treatment, and in worst case scenarios waiting times can be up to four years – efforts are being made to improve NHS services and clinical pathways to make them more appropriate for patients, in light of new research and understanding.
Both Prof Edwards and Dr Dilley have been involved in creating specialist services at UCLH, St George’s Hospital and King’s College Hospital, and have been involved in creating a National Optimal Care Pathway for FND in the NHS, which has been through national patient and healthcare professional consultation.
However, while undoubtedly positive in theory, in practice, there is a long way to go.
“A lot of the efforts to develop more effective services have been held back by fragmentation…we see that particularly between physical and mental health, and also between specialised and community-based treatment,” says Prof Edwards.
“And the NHS Optimal Care Pathway pathway is not funded – so it’s a fantasy pathway. But hopefully over time, we can get commissioners to give it the funding it needs.”
The need for another way – the FND Service
Against a background of patients feeling unheard and not receiving appropriate treatment – and routinely waiting months, if not years, to even receive the first assessment – the urgency for greater support for people with FND is clear.
The need for a more defined pathway, and with it diagnosis of all the problems present and moving as quickly as possible to appropriate intervention, is the driving force between the creation of the FND Service which, through case management and rehabilitation, seeks to achieve significantly better outcomes for patients with FND and related conditions.
The four-stage pathway gives greater clarity than ever before, and with it transparency on timescale and costs. It also maps out a clear service model, showing the process that will be followed from the point of referral.
Referral into the service – at the earliest possible time – can be critical to the outcome.
“I think most people working in the medico-legal world have a good sense of when something just isn’t right with a client or a case, but the key is pinning down exactly what diagnoses are driving that sense,” says Dr Dilley.
“With FND, there are some specific features of patients who are more likely to have these in their presentation. So in their past history, they may have multiple previous medical and psychiatric problems. They may have an unusually large number of symptoms, maybe they’re on multiple medications.
“There can be a mismatch between the severity of an event and then the severity of symptoms, we can see a change from minimal symptoms to very high severity very quickly.
“There are also the interactions – the number of phone calls, the number of contacts, the intensity of those contacts. This can give you a sense that the case is different and one common possibility is an underlying diagnosis of FND.”
After the referral is made to Proclaim Care comes rapid screening of medical information, where the ‘red flags’ of FND and related conditions can be identified from a person’s history and consideration is given to whether the FND Service pathway is the correct route for them.
The information is compiled and initially reviewed by Proclaim Care, then passed to Brain & Mind for further review, and a brief bullet point report is compiled based on the joint review of medical information.
For patients where FND or related conditions seem likely on the basis of this rapid notes review, the next stage in the pathway is a combined case management and medical assessment.
This encompasses many of the aspects traditionally covered in an Immediate Needs Assessment combined with a specialist neuropsychiatric and neurological clinical assessment.
Building on the commitment of the FND Service to simplify and streamline the pathway as much as possible, these assessments are combined into a comprehensive report that covers all diagnoses present, current symptoms and a rehabilitation recommendation, with a target for delivering this 42 days from referral.
“We are looking to simplify the process,” says Prof Edwards.
“Effectively what we want to do is get in early, do the clinical assessment, and we can make the diagnosis. The whole idea is that if you can get people early, give them the right diagnosis and explain that to them, then suggest what kinds of treatments would be most effective, then it’s going to end better for the claimant.
“There are often multiple diagnoses – someone may have FND but also chronic migraine, depressive disorder, PTSD, a pre-existing personality disorder – but if we are looking at it from both neurology and psychiatry, and we have a very good picture of the current symptoms, current level of function and the current challenges, then we can determine the best pathway.
“To do this from an expert reporting point of view would be very time consuming, and also very costly, because you’d be consulting three to four different experts. And it would take maybe a year and a half.”
After the initial review and assessment, before a person progresses down the treatment pathway, it is important that their readiness for rehabilitation is established, to ensure they are able to achieve the optimum outcome at the given time.
“We have a range of specialist FND rehabilitation treatment programmes spanning community, day-patient and in-patient settings, but as well as selecting the right kind of treatment, the person needs to be ready. Rehab readiness is a bit of a ‘Goldilocks moment’, where you’re ready to be a collaborator in rehabilitation,” says Dr Dilley.
“That is an important component of this pathway: we need to assess people’s readiness to actually engage before you fund it. You want to be sure this individual can use the time well, and not three months later, when you’ve already spent the money, realise this isn’t working. That is of no benefit to anybody.”
Establishing readiness can be an important component in building trust with the client, who may have already been rejected by several different services.
“They need to trust us, they need to know they are believed,” says Flora.
“While they could be a candidate for this pathway, it could be that there are other factors in their life that mean this can’t happen right now, be it family, housing, finances, whatever it might be.
“If they are given the opportunity for the best type of rehab, you want them to be in the best place for that to be successful and for them to make meaningful change.”
With the FND Service now open for referrals, as well as delivering potentially life-changing outcomes for people who have previously struggled to secure the support they need, it also hopes to demonstrate the importance of earlier intervention.
It also hopes to deliver on Proclaim Care’s ambition to lead change and education within case management, showing how things can be done differently to the traditional, longstanding approaches to rehab.
“There is good evidence that the longer people go without receiving treatment, the worse their final outcome. The evidence suggests around two thirds of people will see significant improvement with treatment,” says Prof Edwards.
“Through this pathway we plan to gather evidence to see what progress can be made, what expectations can we have, and what improvements can we make to how we work. We hope that can help to inform future approaches to FND.”
- For more information, contact Proclaim Care here
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