Health: Neurological Services

Baroness Ford Excerpts

Tuesday 20th November 2012 Lords Chamber

Asked by

[Baroness Ford]

To ask Her Majesty’s Government what progress has been made in improving neurological services, and in particular the provision of epilepsy services, in the United Kingdom.

[Baroness Ford]

My Lords, I am very glad to have the opportunity to table this Question for short debate this evening, which is now a longer debate. It covers a really important topic at a time of great change and potentially great opportunity for the National Health Service. The opportunity is there to improve neurology services if the clinicians and managers in charge of the new arrangements enable this to happen. But the converse is also true: there is also a risk that current service levels, already unacceptable in many parts of the country, will deteriorate, and I hope that the Minister will address that risk in her response.

I begin my declaring my interest as honorary president of Epilepsy Action, the national charity. I have had the privilege of being associated with Epilepsy Action for some years now and the work that it does and support that it provides for people with epilepsy and their families is simply tremendous. I also have close family experience of the condition and so completely understand the frustrations and challenges that managing the condition brings and of the hit-and-miss nature of the services in different parts of the country.

First of all this evening, I would like to draw attention to the wider issue of neurology services in general. The National Audit Office published a report in 2011 into services for people with neurological conditions, and it is worth reminding ourselves that neurological conditions affect about 8 million people in the UK. The report was not positive. Despite an astonishing 38% increase in spending between 2006 and 2010, there was no commensurate improvement in outcomes. Specifically, people received little or no support after diagnosis. Ongoing care was often fragmented and unco-ordinated. People admitted to hospital as an emergency were usually cared for by health professionals without any neurology experience or knowledge, and perverse performance incentives resulted in a cycle of referral, discharge, and referral. So, one has to ask, where was the money going?

The Public Accounts Committee did just that, and in response, produced an excellent report that set out six recommendations on how the situation could be improved. To their credit, the Government agreed to implement four of these. Can the Minister tell us what progress the Government have made on the PAC recommendations that were accepted? First, can she tell us what progress has been made in the promise to offer a care plan to each person with a neurological condition? The promised implementation date was April 2012. Secondly, the Government agreed to develop a generic neurological quality standard, again by 2012. Can she say what progress has been made in this? Thirdly, a commitment was also given to a plan for driving improvements in quality. This was promised by April next year and so an update on progress would be welcome. Finally, a promise was made to produce a neurological dataset—an extremely important commitment by the Government—by April 2014. Although that is still some way off, again, an update would be welcome.

All of these commitments were made by the Government and will go some way to helping the situation. But I would also like to ask the Minister whether the Government will again consider the recommendation by the PAC to appoint a national clinical lead for neurology. Given that there are currently 8 million people with neurological conditions in the country, that is not a huge ask. We have very welcome national clinical leads for other conditions such as dementia and diabetes, conditions that affect far fewer people, so why is the chief executive of the NHS so resistant to appointing a clinical lead in this important area, particularly as we know there is real room for service improvement and money is not being well spent? Perhaps the Minister can tell us.

The Minister might also like to say why the Government were resistant to mandating joint commissioning at exactly the time when the new NHS arrangements are expected to be significantly more joined up than before. It occurs to me that mandating joint commissioning is simple common sense now.

Turning to epilepsy services in particular, the Minister is aware of the 2009 report by Epilepsy Action, Epilepsy in England: Time for Change. We debated it in this House in September 2010. At that time, I expressed my great frustration that many of the basic building blocks of a decent service were still not in place. Two years on, there has been a slight improvement—I stress slight—but no real movement in getting to an acceptable standard of service.

That brings me to the changes planned for the NHS. The opportunity is clearly there to improve the service for people with epilepsy. But is the will there, and is the leadership there? The new clinical commissioning groups will have a critical role to play in providing and improving services. They could develop a much better quality service than has been the case in the past. But so far the evidence in terms of their planning is not reassuring. Epilepsy Action has been carrying out research into how the NHS in England is preparing for the reforms set out in the Health and Social Care Act. We will publish this research in January 2013, but our findings so far show that two thirds of the clinical commissioning groups that were surveyed do not have, and do not intend to produce, a written needs assessment of the health and social care needs of people with epilepsy. How on earth can appropriate services be provided without a clear assessment of need?

Equally, fewer than one in five clinical commissioning groups that responded has appointed a clinical lead locally for epilepsy. In the absence of a national lead, there is a serious vacuum if there is no local leadership either. Is this something that the Government are prepared to tolerate? How can we possibly maintain and improve services against such a backdrop?

My plea to the Minister is that the Government get on top of this and send out a very clear message to clinical commissioning groups that long-term neurological conditions have to be taken seriously and services planned appropriately. The services for people with epilepsy have not been at anything close to the NICE guidelines for many years. It would be a tragedy if the changes that the Government are implementing now cause the situation locally to deteriorate further because there are welcome changes at a national level, particularly in respect of national or specialised commissioning.

As I understand it, once the changes are implemented, specialised commissioning will become the responsibility of the NHS Commissioning Board. This is a major change and offers a real opportunity to improve services. A single national specification and single national commissioning policy should lead to more consistent standards of care and an improvement in care in those areas where the quality of care in the past has been highly variable. This is a big step forward and I would ask the Minister if she might say a little more about this in her summing up.

Greatly to be welcomed also is the move to commission epilepsy surgery for children nationally. The Government have committed to a three-fold increase in the availability of this surgery, which is fantastic news. Perhaps the Minister could also say whether there will be a commensurate increase in the availability of surgery for adults with epilepsy too, given that we know how totally life-changing and life-enhancing the surgery can be when used appropriately.

There is a huge opportunity to improve services for people with a range of neurological conditions, and we particularly welcome the planned clinical network for neurology. This is a really good step forward. There have been some important changes in the way that the Government have looked at these issues nationally and the new arrangements are to be applauded, but the worry persists—it has been a constant worry all the way through the passage of the Health and Social Care Act. That worry relates to how well the clinical commissioning groups will focus on long-term neurological conditions such as epilepsy, how they are to be held to account for the services that they provide and what the Government will be prepared to do in the event that such services continue to fall short of the basic guidelines set out by NICE. Epilepsy services are already a long way off being acceptable. The last thing we want is for that situation to persist.