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25 February 2016

Government must prioritise people with epilepsy

Epilepsy Society's new chief executive David Marshall  has welcomed a report calling on the government to address inadequate levels of care for people with neurological conditions, including epilepsy.

 

The report by the Public Accounts Committee urges the Department of Health and NHS England to make neurology a priority and ensure that all its recommendations are implemented as soon as possible.

The report states that over 40 per cent of people with a neurological condition do not think that local services work well together, and only 12 per cent have a written care plan to help coordinate their care.

Problems in neurology services

Shortcomings in neurology services include:

  • the length of time taken to diagnose neurological conditions
  • the wide variation across the country in services and outcomes for people with neurological conditions
  • failure of NHS England to offer everyone with a neurological condition a personalised care plan by 2015.

Epilepsy services

The report details the disparity in epilepsy services across the country. The proportion of adults receiving treatment for epilepsy who remained seizure-free for 12 months ranged from 87 per cent in South-West Lincolnshire to 47 per cent in Hull and North Manchester in 2013-14.

It also outlined the financial implications of poor neurology services stressing that it costs £70 million to deal with emergency admissions of epilepsy patients and many of these admissions are likely to result from shortcomings in care.

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

Significant trends

Speaking as the report was published, David Marshall (above, right) commented: 'This report highlights a number of concerning trends, not least the significant variation in services and outcomes across England including epilepsy death rates.

'The report also mentions the loss of epilepsy related patient data to help local commissioners address this. It confirms what we are consistently being told by people with epilepsy: that it is taking too long to gain access to specialist care and that people are not receiving the appropriate support to help them manage their condition.  

'Epilepsy Society will be calling on the government to urgently prioritise epilepsy. While the lack of improvement over the past three years is disappointing, we believe the Department of Health can make genuine progress by implementing the PAC recommendations. This would begin to address the unacceptable level of variation in epilepsy care across the country.”

Abolition of national clinical director

The PAC report says there is scope to give patients better access to neurologists by using existing resources more effectively.

It criticises the proposed abolition of the role of national clinical director for adult neurology and ineffective commissioning of neurological services.

And it emphasises that the government must address the lack of plans to improve the linking of health and social care data beyond the ‘care data’ initiative, which is unlikely to be implemented before 2020 at the earliest.

It costs £70 million to deal with emergency admissions of epilepsy patients and many of these admissions are likely to result from shortcomings in care.

Progress not translating to better outcomes

The report says: 'There has been some progress in implementing the recommendations that the previous committee made in 2012, including the appointment of a national clinical director for adult neurology and some improvements in data. However, these changes have not yet led to demonstrable improvements in services and outcomes for patients.

'It is clear that neurological conditions are not a priority for the Department of Health  and NHS England, and we are concerned that the progress that has been made may not be sustained. We therefore intend to review the position again later in this Parliament.'

PAC recommendations

PAC recommendations include:

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.

Epilepsy Society will be calling on the government to urgently prioritise epilepsy. While the lack of improvement over the past three years is disappointing, we believe the Department of Health can make genuine progress by implementing the PAC recommendations

Neurology services falling behind

The report comes at a time when neurology services have come under scrutiny for falling behind other condition areas. A 2014 Freedom of Information audit sent to every CCG found extremely high levels of disengagement from neurology, with only 20 per cent 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.

Voice of patients

Arlene Wilkie, Chief Executive of the Neurological Alliance, said:

'The Public Accounts Committee's report 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.'