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The Invisible Patients: Why Neurology Patients are Tumbling Through the Gaps

25/02/2015 12:09 GMT | Updated 26/04/2015 10:59 BST

In a previous post I looked at what good headache services can look like and many of the points are relevant to other neurological and long-term conditions. But the bigger question is, if we have models of good practice that we know save money, why aren't they being replicated everywhere?

Funding is a major issue. We know that specialist nurses save money - fewer patients turn up in the consultant's clinic, at A&E, or get admitted to hospital. Waiting times are reduced and preventable problems are addressed. Unfortunately the gains made by such pro-active care aren't immediate. Commissioners have to invest in specialist nurses and GPs with a special interest to save in the long run. With budgets squeezed, these seemingly 'non-essential' roles don't appear to be high on the priority list.

This is a tragedy, when relatively inexpensive measures like specialist nurses who can manage care plans for patients are crucial to delivering joined-up care. Here's an excellent King's Fund video about why joined-up care matters and why we need it in the NHS:

Why don't commissioners understand the true value of these staff? To really recognise the benefits they offer you have to get to grips with patient data to see how people flow through the system and where costs lie, which is something many clinical commissioning groups (CCGs) are not doing.

Luckily, these musings coincide with the recent launch of a report by the Neurological Alliance called 'The Invisible Patients', showing that neurology patients are tumbling through the gaps. Why? Because commissioners have an alarming lack of understanding around local neurological populations and their needs.

When I mentioned data before, you might think this sounds complex. But the report uncovers that many CCGs are not looking at very most basic data to understand how they need to commission services. Like, how prevalent are neurological conditions in the area? (Only 26.2% of CCGs have assessed this.) And only 20.4% of CCGs have assessed the number of people using neuro services. If that sounds bad, try this: only 14.7% of CCGs have assessed local costs of providing neurology services.

Is it any wonder then that well thought out services aren't being delivered and that patients are suffering? The report finds that 58.1% of patients have experienced problems in accessing the services or treatment they need. And this is no small issue - the Neurological Alliance represents the 10 million people in the UK with a neurological condition, so CCGs are failing in their duty on an enormous scale.

Arlene Wilkie, the Neurological Alliance's Chief Executive, said that this report must be seen as a wake-up call:

"For far too long, people living with neurological conditions have been 'invisible patients', ignored and let down by an unresponsive health and care system. Commissioners are failing to carry out vital tasks for neurology, from need and prevalence assessments to ensuring patient engagement and feedback. As a result, there is no strategic approach to improving pathways and outcomes for people with neurological conditions, and their care is suffering."

Well said, Arlene.

She goes on:

"This must change. At a time when NHS England is planning to expand CCGs' commissioning responsibilities for neurology, it has never been more important for local commissioners to actively improve their engagement with and understanding of neurological conditions. We need urgent action now, so that the millions of people with neurological conditions receive the care they need and deserve."

It's not impossible to get neurology services right - models of excellent practice across the country show how it can be done. The major hurdle is knowing where the problems lie and the steps to take, many which the report highlights. Plus, delivering good services for long-term conditions tends to cost less overall; if this isn't incentive enough for CCGs, I don't know what is.

This article originally featured on the author's blog, The Mehta Analysis.