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Government must show more ambition for epilepsy care


23 May 2016

The department of health has rejected two key recommendations from the public accounts committee* for improving epilepsy services in England. Our policy advisor Finn O’Dwyer-Cunliffe explains that epilepsy services are suffering from a lack of ambition from the department and that this must change if outcomes are to improve.

The Government’s response to the public accounts committee’s report into services for people with neurological conditions proved to be a disappointing reaction to the committee’s recommendations.

Following a 2015 report from the national audit office and an oral evidence session last December, the public accounts committee (PAC) released a report urging the department of health and NHS England to take meaningful action to address “wide variation across the country in access, outcomes and patient experience” for people with neurological conditions including epilepsy. PAC made six recommendations for improvement and announced its findings as a “wake up call” for the department on the state of neurological services in England.

If the department has heeded this call, its awakening has been slumberous at best. The response at first glance is a mixed bag of good and bad news, with three of PAC’s six recommendations having been accepted. However, it is particularly disappointing that the department has rejected both the most ambitious and important recommendations.

Recommendations rejected

In 2013, NHS England was set a mandate to ensure everyone with a long-term condition would be offered a personalised care plan by April 2015. This was certainly an ambitious target, but appropriate given the particular difficulties faced by those with (sometimes multiple) long-term and complex conditions in accessing timely and appropriate treatment. After three years of taking few tangible steps to achieve this goal, and in the face of evidence that people with neurological conditions were not being offered care plans, the department has decided not to redouble its efforts, but instead to scrap the objective altogether. 

PAC also recommended that NHS England retain the role of national clinical director for adult neurology. This was not simply an attempt at saving the employment status of one well-respected NHS clinical leader, but a recognition that neurology has benefitted from having a national figurehead, as well as the networks and influence that came alongside a role so ably performed by Dr David Bateman.

Without Dr Bateman as an advocate, the position of epilepsy and other neurological services within the NHS has been further compromised, and it is again frustrating that the department has made the decision to retire this position less than three years after accepting the recommendation to appoint a national clinical director.

The Government’s approach towards neurological services has not shown a clear overarching commitment towards improving access, outcomes and patient experience. Its response has instead admitted that epilepsy care is not being prioritised at a national level, saying “the focus of NHS England’s improvement efforts (during 2016-17) will be targeted on a smaller range of key national priorities including cancer, mental health, diabetes, maternity and urgent and emergency care.”

The department of health and all its subsidiary bodies must get better at engaging with stakeholders, including charities and patient groups, to ensure expert advice is utilised in healthcare decision-making at all levels and in all localities.

A local focus

We have welcomed the department’s decision to accept the committee’s recommendations around commissioning clarity and tackling variation. While the introduction of a revised service specification for neurology to help clarify commissioning responsibilities has been in the works for some time, the recent introduction of commissioning for value (CfV) packs to help clinical commissioning groups (CCGs) recognise and address poor outcomes is undoubtedly a positive development.

The Government has increasingly emphasised that responsibility for improving outcomes in neurology lies with the 211 clinical commissioning groups across England. Given the unacceptable variation in the quality of care and outcomes for people with epilepsy, and the inadequate access to specialty care experienced by many, it is disappointing that the department of health hasn’t made improving neurology services a national priority.

A route to progress

We shouldn’t accept the notion that the current model will never work. While the Health and Social Care Act has not yet delivered the increased efficiency it hoped to leverage from local healthcare systems, there is undoubtedly potential for improvements to be made from allowing local healthcare decision makers to assess and respond to the unique needs of their populations.

The CfV packs have been designed to “stimulate discussion about the prioritisation and utilisation of resources in order to tackle unwarranted variation.” Furthermore, the department of health has said that “tackling unwarranted variation will be a core element of CCG assurance and assessment activity.”

This, in theory, means that NHS England and the department will be keeping a watchful eye on CCGs to ensure better – and more equal – access and outcomes for people with epilepsy and other neurological conditions. In order to make this happen, the Government must ensure that clear leadership structures and accountability frameworks are put in place to monitor the effectiveness of CCGs, with reviews and ramifications for those that are underperforming. Equally, tools such as the CfV packs must be frequently replenished with up-to-date outcomes data to help CCGs make decisions on where to allocate resources.

Stakeholder engagement

Finally, the department of health and all its subsidiary bodies must get better at engaging with stakeholders, including charities and patient groups, to ensure expert advice is utilised in healthcare decision-making at all levels and in all localities.

The public accounts committee highlighted clear gaps in services and an overall unsatisfactory state of affairs for people with neurological conditions. The department’s response has been disappointing and uninspiring, but it can influence positive change simply by showing the ambition to provide CCGs with the best information and to hold them to account where outcomes are not improving.

* The public accounts committee is a select committee of the House of Commons which scrutinises the value for money of public spending and holds the government to account for delivery of public services.

Read more

Epilepsy Society disappointed at Government failure to prioritise neurology services

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