Lancashire Teaching Hospitals are celebrating a significant milestone for their growing Functional Neurological Disorder (FND) service, with the addition of a new Patient and Public Involvement Partner (PPI) who was successfully treated following his diagnosis
Following his full recovery, Matthew Newsham, from Morecambe, has taken on the role of PPI partner, which involves current, former or potential patients participating in research and engagement for a specific service at the Trust.
FND, previously known as conversion disorder, is one of the most common but little-known Neurological conditions, with around 200,000 people suffering in the UK. It describes a problem with how the brain receives and sends information to the rest of the body.
Patients can experience neurological symptoms such as weakness, movement problems, sensory symptoms, and convulsions, and a combination of treatments is required, including physiotherapy, psychological mental health feedback and occupational therapy.
Matthew is only too happy to help raise awareness, having had a difficult five years with the condition: “I was diagnosed with FND in 2019 in Lancaster by Dr John Nixon - I’d never heard of it. I was signposted to the neuro symptoms website, and I ticked every box.
“For a long period of time there was no signposting, no pathway in terms of treatment, but I bumped into Dr Das, and was referred to him at Preston, which was a gamechanger.
“I have a few symptoms now and again but I’m in remission and pretty much there. From 2019 it’s been a hell of a five years but it’s a big achievement where I’ve got to.”
To raise awareness, Matthew presented the Trust’s EPSRC-funded research at the inaugural National Rehabilitation Centre (NRC) Rehabilitation Technologies conference in Nottingham in September.
Abhijit Das, Consultant Neurologist and Clinical Lead of the Functional Neurological Disorder Service, said: “This is testament to the efforts of everyone involved in making the service a success. We should celebrate this progress and the positive impact we are making together!”
Dr Das has built up the service since joining the Trust in 2022 and has helped Matthew to a stage where he is in remission.
Dr Das said: “FND needs to be understood. Since I joined the Trust, my colleagues in Neurology, Neurorehabilitation and Neuropsychology have been very helpful, and we are slowly building up the service to where we have a full Trust-level Integrated care system programme.
“People have not known where to go for a diagnosis, they have been in limbo. Matt was referred to me as a patient, and his progress has been heartening. He is passionate about FND, and has become a patient advocate, while he is also setting up a North West charity.”
Matthew is determined to make life easier for those with FND: “I decided I was going to venture into a charity or non-profit organisation to help patients with FND and help clinicians build a care pathway that needs to happen nationally, not just in the north.
“There are a few FND charities, but they are predominantly down south. The work Dr Das has done in terms of setting up a clinic is huge for people in the N
orth West and further afield. I’m working with him on rehab, technologies and dragging everything into the 21st century. It will be massive for FND.”
Katerina Hatjipanagioti has also become a Patient and Public Involvement (PPI) partner with the department. She has been living with FND for 15 years post viral infection, and whilst not a patient of the service – she is based in Birmingham - she became involved after remotely contributing to PPI discussions at the first co-creation workshop of digital health technologies for the management of FND last year, organised by Dr Das and Dr Anirban Dutta - Associate Professor of Quantitative Biomedicine at the University of Birmingham.
Katerina will be presenting the Trust’s Engineering and Physical Sciences Research Council (EPSRC)-funded research findings later this month at the Royal Society in London.
Katerina had also never heard of FND before her diagnosis, which she didn’t receive until almost a decade after onset, having finally been referred to FND Movement Specialist and Consultant Neurologist, Prof. Mark Edwards at St. Georges Hospital in London.
Whilst St. Georges provides a multidisciplinary FND outpatient rehabilitation programme, due to the nature of Katerina’s movement disorder being episodic, she was unsuitable for the specialist FND physiotherapy on offer by the service.
Katerina is also helping to aid research for FND rehabilitation and using her experience to provide vital insights from a woman living with the condition, of which 75% are disproportionately affected. She will be continuing to collaborate as a patient partner on a number of exciting research projects using revolutionary rehabilitation technologies led by Dr Das and Dr Dutta, and is appreciative of the efforts being made in this area: “I think it’s wonderful that Dr Das has spearheaded a service such as the one he has created in Lancashire, so sufferers of FND can receive the excellent level of service they deserve, that is usually only offered by specialist services in London.
“Alongside Dr Dutta they are propelling research using novel technologies with such enthusiasm and compassion for patients. I feel honoured to be involved and hopeful for the future treatment of FND.”
