Neurodigest Issue 5

Hello and a big welcome to the 2020 edition of Neurodigest.

Once again, we have made it our mission to trawl the UK for exciting ideas, innovation and best practice in the world of community- based neurology. We aim to showcase the people and ideas that are shaping this world for now and the future. If we were all as good as the best of us just think how good that would be!

Our news section will bring you up to date and signpost you to all that is new in the world of research. We have brought together a brief synopsis of all that is going on. If it tickles your fancy then the full news articles can be found in the News and Reviews section.

If we have a theme in this edition it is ‘the gut’. We are indebted to Valentina Leta and Ray Chaudhuri for bringing us up to date with the latest views on the role the gut might be playing in the pathophysiology of Parkinson’s disease. If we are looking for the “smoking gun” then the gut might be a target rich environment. Could altering the gut microbiota influence the disease process? SymPD might go some way to answering these questions.

Continuing on the theme of “we are what we eat” Susan Wood and Catherine Zabilowicz inform us of the experiences of patients with brain tumours who have followed a ketogenic diet. A qualitative survey into the experiences of 25 patients who followed this diet is reported. This is an important insight into the views and experiences of patients who choose this diet.

Neurodigest is thankful to Louise Henry and Clare Shaw for providing a current perspective on the role of the ketogenic diet in the management of cancer. They highlight some of the ethical issues surrounding the promotion of a treatment which has limited clinical evidence and remind us that following a ketogenic diet may not be without risks. Food for thought indeed!

Service development is key to “getting it right”, and Helen Spear writes eloquently on the subject. Allowing us to get into the head of the patient helps us understand how the life changing diagnosis of a brain tumour can affect all aspects of life and how important the network of allied health care professionals can be in supporting the patient on their journey.

There is nothing like reading about a patient’s experiences to add clarity to what works and what needs improvement. Neurodigest is very grateful to Tracy Posner and Neil Bindemann for sharing their experiences with us. Such accounts should always make us stop and reflect on our own practice, and think how we can improve our patient’s journeys.

Our reason for existence is unearthing and disseminating innovation. Neurodigest is thankful to Linda Charles-Ozuzu for showing us all how to make a difference. The Animal Farm model of “just work harder” is of course doomed to failure. We all need to have time to reflect on our service and see how we can do thinks in a smarter way. The National Elective Care Transformation Programme is tasked with doing just that. To ensure the patients see the right person at the right place, at the right time, first time, would go a long way to improving patients’ experience. Linda shares with us some of the successes of the 100-day neurology challenge. Neurodigest challenges you “Dear reader” to join the Community of Practice (email ECDC-manager@future.nhs.uk) and make a change!

Please read Jason Price’s review of hypnosis and functional neurological symptom disorder (FND) carefully. Patients with FND are, in the most part poorly served by the traditional subspecialty outpatient model. Telling a patient they have nothing “seriously wrong”, reassuring and then discharging, often does little for the FND patient. They are left with no understanding and no support. Jason explains the application of the Bayesian model as a way of explaining a patient’s symptoms and that understanding the patient’s symptoms within this model opens up a new direction for neuropsychological therapies. We should all be confident in making a positive diagnosis of FND and to be able to explain the current thinking of mechanism of their symptoms and be able to offer them effective therapies.

On a final note, in my view there is little that can’t be improved with exercise. We need to spend more time encouraging activity and less prescribing of pills. Andrea Stennett gets under the skin of the physiotherapist to explore their views of exercise and physical activity in patients with MS. More understanding of what patients with MS do and why they do it can better help us support them. Keep dancing!

Alistair Church, Neurodigest Editor