Making FND make sense – why understanding a patient’s family, friends and life are vital to functional gains
By Consultant Clinical Neuropsychologist at PJ Care, Estefania Triguero
Throughout my 15-year career in neurorehabilitation, understanding a patient as a unique individual has always been key. Whether they have a neurological condition or an acquired brain injury caring for that individual requires a compassionate, holistic and person-centred approach.
A patient’s family and friends typically play a huge role in their recovery and condition management and none more so than for patients with Functional Neurological Disorder (FND). A neurological condition causing symptoms including limb weakness, seizures, movement disorders and sensory disturbances, FND has no identifiable structural cause in the brain or nervous system.
And despite the number of people with the condition growing worldwide, and a lack of provision in the UK to treat the 50-100k people affected by FND, it remains a relatively unknown condition to many people and practitioners alike.
In my role at PJ Care, I meet patients and their families who have faced years of symptoms and delayed diagnosis. Often, despite receiving an FND diagnosis they are still unsure of what the condition is and what the diagnosis means for them.
All too often I have to reassure patients and their families and friends that the symptoms they, their daughter, sister, dad, uncle whoever it may be, is experiencing are real. Symptoms are so varied and can alter from one day to the next so patients are often thought to be ‘making it up’ or ‘faking it’. As many of those with the condition don’t understand themselves what is happening to them, which can change or progress over a period of months or years, they too may start to doubt their legitimacy and struggle to cope. Without the understanding and support of family and friends these feeling can be exacerbated.
My first meeting with any FND patient and their family is always about reassuring them. I’m there to listen, understand and recognise their individual set of symptoms and circumstances. It’s not about misleading them and telling them everything is going to be ok.
It’s about telling them it’s not going to be easy, but we will try to make tangible, functional gains within their life to make the everyday better for them. It’s here we ask the question what they want to achieve and what’s important to them which might be adjusting to a busy family life.
There aren’t any miracle therapies or treatments for FND. Working with colleagues across multi-disciplines we need to understand the patient’s life. What do they do outside of the treatment centre? Do they work? If so, what do they do? Who do they live with? Who do they interact with regularly? Who are their family, friends, colleagues etc? What is their role at home and in the community? We need to understand what they do on a daily basis, what’s important to them and what are their own personal goals.
This is becoming increasingly important for us at PJ Care as we have expanded our inpatient service to outpatients. While it’s a lot easier to control external factors with our inpatients, daily routines and personal interactions are massively important for outpatients who will be coming and going from a clinical setting.
At the heart of effective support is a deep understanding of the patient not just as someone with the condition but a whole person with a life beyond the clinical setting.
Listening to friends and family is an important part of that journey. They are the patient’s support network, but in some circumstances they are also a trigger, so meeting and hearing from them is a key part of the personalised treatment plan. Understanding the role they play in the patient’s life is vital to making functional gains and for giving them the support and strategies they need when they go home at the end of their session.
Making FND make sense, tackling stigma and providing clear jargon-free explanations to patients and those around them helps them understand the condition and is an essential part of the treatment process.
Making functional gains, big or small and unique to the patient, is at the heart of everything we do. There’s no point our physiotherapists or psychologists ‘prescribing’ tasks and exercises to a patient if in reality they’re unlikely to do them. While we have more control in a clinical setting, we still try to make them relevant to an inpatient’s interests such as preparing food, shopping or contacting people . For outpatients, this might be exercises they can do while sitting at their desk at work or walking a dog with a family member. Knowing that someone is a parent, a carer, or a student for example helps us shape how treatment is delivered and how goals are defined.
Where family and friends can not only understand the condition but also support their friend or relative with FND we see massive changes in their condition and greater functional gains. Family in particular can play a big role in helping stop unhealthy patterns , fostering a more enabling environment and offering much-needed emotional and empathetic support which in turn supports long-term recovery.
We try to frame recovery and functional gains aligned to what matters most to the patient, rather than focusing solely on symptom reduction.
And as inpatients become outpatients, and our patients need less frequent treatments, the question becomes what next? And it’s then that the personal gains made in treatment and supporting that person as an individual are essential to changing their life long-term.
We make sure that the person has the right tools, strategies and networks to continue to manage their health and symptoms. Their community of family and friends is part of this as is making sure the patient feels there is a clear path forward; recovery isn’t a destination but an ongoing, evolving process. This might be helping them to set long-term goals aligned to their personal values and aspirations from returning to education, work or hobbies to travelling the world.
Ultimately success comes through offering a multidisciplinary, person-centred approach. And a key part of that lies with fully understanding a patient’s everyday life.
