Project Manager, Community Neurology Project, NHS England
Neurological conditions are many and varied. The term covers a huge variety of significant health problems, from isolated injuries to recurrent or progressive conditions. Whilst awareness of Parkinson’s disease, multiple sclerosis and epilepsy is high; transverse myelitis, acoustic neuroma, neurofibromatosis, dystonia, congenital hemiparesis – the list goes on and on – much less so.
Despite the almost nebulous perception of neurology it often surprises people that there are over 12 million cases in England alone. In fact, 17% of all GP appointments, and almost 1 in 5 hospital admissions, are for people with neurological conditions. A typically-sized Clinical Commissioning Group area may have about 60,000 patients with a neurological condition and almost of them will require long-term care and support.
Despite this, integrated care and care planning for these patients is the exception rather than the rule; Only one in ten have a written care plan and only a handful of those patients were actively involved in designing theirs. Patients may see a health care professional for a few hours each year and for 99% of the time they have to self-manage their condition. A recent NHS England patient survey found that those with neurological conditions report having the highest levels of pain, anxiety and depression.
A fifth of patients say they do not feel they get enough support. The impact of this can be evidenced in the high number of emergency admissions for people with long-term neurological conditions (700,000 during 2012/13 at a cost of £750 million), many of which might have been avoided by providing more timely and appropriate care or support to patients.
Failing to access appropriate care can lead to poorer outcomes for people affected by neurological conditions and put pressure on other parts of the health and social care system. Reports by the National Audit Office and the Public Accounts Committee in 2011 demonstrated that current service configurations are failing people with neurological conditions. These reports identified a number of problems, including: delays in receiving a diagnosis, a lack of access to information and care that is fragmented and poorly-coordinated.
A few years after the original PAC report, NHS England published its Five Year Forward View, in which it called for more integrated approaches to care delivery to be developed to improve the quality and efficiency of services and improve patient outcomes, moving care closer to home from acute services to community services wherever possible. This is especially relevant to people living with long-term neurological conditions and it was with this in mind that NHS England’s Long Term Conditions Support Unit established the Community Neurology Project in 2015.
Managed by Thames Valley SCN, the project’s aim is to stimulate the delivery of person-centred coordinated care for people with neurological conditions by encouraging the adoption of community based care models.
Shifting when and where care takes place (to a more appropriate time and place), involving the patient more in their care and support planning, addressing their mental health needs alongside their physical health needs and improving coordination between service providers can have profound benefits: reducing health system costs and pressures; improving access to health services and delivering better patient experiences and outcomes.
Working in collaboration with Sue Ryder, Windsor Ascot and Maidenhead CCG, Neural Pathways (UK), Royal Holloway London University and Southampton University Hospital, with clinical leadership from Professor Zameel Cader, Consultant Neurologist at Oxford University Hospitals NHS Trust, the project team researched a number of key themes in the field of community-based person-centred coordinated care and wrote a Transformation Guide to support commissioners, launched at a well-attended conference in the summer.
The centre piece of the guide is a new care model, based on community-based coordinated care which integrates services across sectors and organisational boundaries that embraces opportunities offered by new technology to support both the physical and mental health needs and priorities of the individual. No matter what the pathway or condition, these five features should always be present.