People with neurological conditions must be prioritised

SUDEP Action and the Neurological Alliance welcomes today's report on services for people with neurological conditions by the Public Accounts Committee (PAC), and urges NHS England and the Department of Health to prioritise neurology and ensure that all recommendations are implemented as quickly as possible.

The PAC (whose hearing we have provided evidence for and reported on in December), found a number of issues with neurology services including that “diagnosing neurological conditions takes too long, services in hospitals are variable and local health and social care services are often poorly coordinated.” It warns that “neurological conditions are not a priority for the Department of Health (the Department) and NHS England, and we are concerned that the progress that has been made may not be sustained.” The PAC made a series of recommendations which include the following:

1) NHS England should retain the role of national clinical director for adult neurology.

2) NHS England should set out by April 2016: how it will use the new commissioning for value data packs to help clinical commissioning groups improve neurological services and reduce the variation in services and outcomes; and how it will then hold clinical commissioning groups to account for their performance in this regard. 

3) NHS England should set out clearly by April 2016 which neurological services are specialised services to be commissioned by NHS England and which services should be commissioned locally by clinical commissioning groups.

The report comes at a time when neurology services have come under scrutiny for falling behind other condition areas, and at a time when although overall UK mortality rates are falling, those for epilepsy (in particular those classed as 'avoidable') are not. The latest NHS England GP patient survey shows that patients with long-term neurological problems report both some of the worst states of pain and some of the highest levels of anxiety or depression, with the lowest health outcome scores of any long-term conditions. Despite these issues, neurology has largely been ignored by local commissioners and continues to lag behind other condition groups in service quality, availability and access. A 2014 Freedom of Information audit sent to every CCG found extremely high levels of disengagement from neurology, with only 20% of CCGs able to identify the number of people using neurological services within their area.

Despite these longstanding issues, NHS England announced in January that the role of National Clinical Director for adult neurology would be cut from March onwards, leaving neurology services with no source of clinical leadership at the national level; something we have strongly contested. 

Arlene Wilkie, Chief Executive of the Neurological Alliance, said:
“The Public Accounts Committee's report today echoes our view that neurology services within the NHS require urgent attention. We urge NHS England and the Department of Health to act quickly to ensure that everyone living with a neurological condition receives a high-quality, accessible services. 

In particular, we are pleased that the Public Accounts Committee agrees that NHS England’s decision to cut the role of National Clinical Director for adult neurology is a backward step for services and a real blow to patients and families. The millions of people living with neurological conditions must not be treated as an afterthought. NHS England must listen to the voices of patients and think again.” 

Sammy Ashby, Policy and Development Manager for SUDEP Action, said:

"The PAC report findings echo what we in the Neurology community have known for some time; that more needs to be done by Government to improve the care and outcomes for people with Neurological conditions such as epilepsy. This is why SUDEP Action are dedicated to collaborating with clinical teams and organisations around the UK and beyond to tackle this urgent need by developing practical solutions that can improve epilepsy care now; in order to reduce the number of epilepsy deaths each year, until a time when Neurology and Epilepsy in particular are given the national and Government attention they need to address these issues."

You can read the full PAC report here.