Welcome to our third edition of Neurodigest, a journal that likes to hoover up the best of neurological care in the community from around the UK and present it to you in an easy to digest form. Download a full PDF of this issue here.
We start with a problem which tests the best of us – trying to tease out what causes the “bump” in the night. This can indeed be a nightmare. Neurodigest is indebted to Gary Dennis for shining a light into this dark nocturnal World, highlighting the complex interplay between epilepsy, sleep, parasomnias and REM behaviour disorders.
Having a child with a diagnosis of refractory epilepsy can be a challenge for any family. Following a strict ketogenic diet can only add to this stress. Ewan Forbes outlines the reasoning behind such dietary manipulation and provides valuable information for the support available to families as well as clinical commissioners looking to set up a ketogenic service.
Increasingly services need to prove their worth. If you can’t provide qualitative evidence of effectiveness then you are likely to find yourself under increasing pressure. Rehabilitation services have not been immune from rationalisation. The ability to benchmark your service against alternative models allows for improvement through the dissemination of best practice and Pam Enderby offers TOM (therapy outcome measure) as a validated tool to accomplish both of these requirements.
Neurodigest is grateful to Paul Morrish for pointing out that us GPs don’t always find neurology easy. He demonstrates another example of the inverse care law. 1 in 5 of GP consultations are neurological, trying to sift out the serious from the less so is challenging yet our neurological training is for the most part woeful. A recipe only benefiting the authors of “Avoiding Errors in General practice.”
Those of us who work within the traditional model of outpatient care are fully aware how out dated it can be. Seeing patients twice a year for a matter of minutes to try and deal with a patients complex and changing needs has its limitations. Stephen Williams gives a glimpse of a brave new world, placing the patient firmly in the centre of their care – care which is centred within the community they live in. It seems so intuitive. Why aren’t we all doing it?
Building on the need for more community-based service, the East Midlands NHS Clinical Networks report on the meeting held in June 2016, at which 40 colleagues from across the East Midlands and further afield came together in an event where energy, ideas, tenacity and particularly, a shared commitment to developing quality services for people with long term neurological conditions were evident. At that meeting participants were provided with an opportunity to network, share learning and progress and ascertain the extent to which the commissioning guidance that had been launched 6 months earlier ‘Community-based rehabilitation of people with long-term neurological conditions – Commissioning guidance and sample service specification’, had informed work in their areas.
Motor neuron disease (MND) is the perfect example of the type of condition that both Paul and Stephen are describing. A GP might only come across a new diagnosis once or twice in a career. With its insidious onset and rarity it is the perfect storm for a delayed diagnosis. Patients with MND require a highly organised level of care which is likely to involve many disciplines. The best models demonstrate strong levels of communication and are imbedded in the community, placing the patient firmly in the middle. Gary Dennis and Rachael Marsden provide an overview of the 2016 NICE guidelines for the assessment and management of MND.
Neurodigest is thankful to Greg Rogers for reminding us of the size of the treatment gap which exists within epilepsy care in the UK, along with some big numbers which show there is significant room for improvement. A good start would be to take on board his top tips, or even complete the BMJ learning model on “Epilepsy: diagnosis and management in primary care” over lunch!
Improving our care for patients with Epilepsy requires change in commissioning of that care. There is little cheer in Olivia Rzadkiewicz’s article highlighting the lack of CCG provision for assessment of health and social care needs for people with epilepsy. However help is at hand for those that want it. The Epilepsy commissioning toolkit is available to support the commissioning process and allow the benchmarking of existing services against epilepsy quality standards.
We very much hope you enjoy this second issue of Neurodigest.
Should you wish to offer your thoughts/comments on any of the subjects being aired, or you would like to contribute to a future issue, please get in touch with the Publisher Rachael Hansford.