Happy New Year and a big welcome to our Winter 2018 edition of Neurodigest.
We have once again scoured the UK for the best examples of great care within the neurology community, to inform the reader and hopefully stimulate improvement in the service we provide to our patients.
Frailty is becoming an increasingly important concept, both personally and within the wider care community. As more of us are ageing, how we manage health care needs is going to have to change. The hospital model of care is increasingly out dated and bursting at the seams. Patients’ health care needs need to be identified and managed in the community so they avoid reaching a crisis point which leaves them lying on a trolley in a hospital corridor for hours on end. The use of frailty scales to assess and predict the likelihood of medical need is being rolled out. We are indebted to Roger Henderson in this issue for highlighting the importance of a full “frailty assessment.” This should be standardised and integrated routinely into the assessment of our at risk patients. We need to move away from a limited organ based examination to more of a functional assessment of what a patient can and can’t do. These assessments are not limited to the medical assessment unit but increasingly used by falls/community clinics. Sleep is an under recognised factor in frailty. Roger reminds us that sleep disorders come in many forms and that impaired sleep impacts on most of our daily activities. I am sure we are all aware of how our cognitive functions decline with sleep deprivation, but if you combine that with frailty, chronic disease and multimedication then it is hardly surprising that mind and body struggle to cope.
Neurodigest is hugely thankful to Jennifer Bedford for highlighting the latest Motor Neurone disease (MND) primary care guidance. This is a condition we encounter infrequently but these are often patients we never forget. General Practice is not about knowing everything but knowing where to look when you need it! I think you can learn a lot about a health care system by looking at how it manages patients with MND, and this comprehensive guide to the diagnosis and management of this life limiting condition is impressive. I would argue that patients with MND should very rarely have to visit a hospital and virtually never visit an accident and emergency department. Good communication, advanced planning and joined up support in the community should ensure that patient and family don’t travel alone along their path.
Neurodigest likes community networks very much. The words; joined up, collective working, thinking beyond traditional boundaries and connectivity get us excited. The world is changing and the traditional model of outpatient care seems increasingly outdated. Julie Riley points out that the vast majority of patients presenting with headache can be managed in primary care. GPs supported with headache guidance and pathways can be empowered to diagnose and treat most headache disorders. Early access to appropriate diagnosis and treatment options are what patients want, not 6 months waiting to see an “expert.” This is a win for the patient, more job satisfaction for the treating physician and cuts referral waits. A triple “winner.”
Julie reinforces what most of us already know – that nurse specialists can be the answer to breaking down barriers, supporting patients in the community, providing expert advice and continuity – and reducing those 6 monthly outpatient visits to see another junior doctor! A better understanding of how families cope with illness is key to supporting them and providing support where and when it is most needed.
Emma Williams, Clare Szwec and Nia Emlyn- Jones remind us that overall quality of life for our epilepsy patients and their families is ultimately the target we should aspire to. Quantifying the number of seizures in epilepsy is quick and easy but doesn’t tell the whole story. Putting the emphasis on understanding the full impact on the family and improving quality of life should be the key outcome measure.
This ties in nicely with #inthemoment. Matt Robinson shares this initiative, providing insight into the life of teenagers with epilepsy. The more awareness, support and understanding in the community, the less the stigma.
Neurodigest is delighted to disseminate Epilepsy Action’s article on epilepsy medication side effects. The more information that we can provide our patients to help them manage their condition and understand their treatments the better. We are all drowning in information, but to know where to look for good quality information which answers the question in language we can understand is priceless. Patients with chronic conditions such as epilepsy need to be given the tools and each empowered to become expert patients.
The unsteadiness we often experience as we step off a boat is unsettling but thankfully for most of us is short lived. Polly Moyer gives us a first-hand account of what it is like if that sensation of movement becomes chronic “Mal de Debarquement syndrome.” Rare conditions are rarely diagnosed in a timely fashion. The key to improving this is education and nothing educates quite like reading about a patient’s journey. Polly writes most eloquently of her and others’ paths to diagnosis and understanding of this and other conditions of misperception of motion.
I hope this edition of Neurodigest will interest you and perhaps make you think about your local neurology provision and how you can evolve it to meet the challenges and opportunities for the next chapter in the history of our health service.
Alistair Church Neurodigest Editor