Health: Neurological Services

Baroness Gale Excerpts

Tuesday 31st January 2017 Lords Chamber

Asked by

[Baroness Gale]

To ask Her Majesty’s Government what progress they have made in improving neurological services in England.

[Baroness Gale (Lab)]

My Lords, I am very pleased to have the opportunity of debating this matter and thank all noble Lords who are taking part. I declare an interest as co-chair of the All-Party Parliamentary Group on Parkinson’s. Quality neurological services are vital to help people manage Parkinson’s. It is a complex and debilitating condition for which there is no cure. These services are also vital to people with motor neurone disease, epilepsy, migraine, multiple sclerosis and myriad disorders of the brain, spinal cord and nervous system that affect more than 12 million people in England.

I want to focus on the opportunities to improve services, in particular, those initiatives, often proposed or driven by clinicians and expert organisations, which now rely on the political will of Ministers, the Department of Health and NHS England if they are to succeed.

A long-running, major issue for neurology in England is the lack of leadership. A significant amount of NHS and social care money is inevitably spent on neurology. Between 2003 and 2013, there was an increase in funding of 200%, yet there was no accompanying improvement in services. A national clinical director of adult neurology post was created and filled in 2013 following a recommendation in the Public Accounts Committee’s 2012 report. Although the postholder was contracted for just two days a week, he is widely acknowledged to have made significant progress by encouraging better co-ordinated working and mapping service provision. None the less, the PAC heard in evidence for its follow-up report four years later that the NCD for neurology role was likely to end in March 2016. There was no transparency around the decision. No consultation was conducted, and no impact assessment was made available. I tabled Questions on this issue and was given assurances in Written Answers that strategic clinical networks for neurology would be able to do some of the work. Soon after receiving those assurances, it was announced that the funding for those networks was also to be withdrawn.

In the period of confusion and uncertainty that followed and in the absence of any other proposals, it was the Neurological Alliance—a collective voice for more than 80 organisations—that took the initiative and suggested an alternative structure called the National Neurological Advisory Group. This group comprises a range of stakeholders giving their time and expertise voluntarily. It includes the Neurological Alliance, the Association of British Neurologists and the Society of British Neurological Surgeons. NHS England provides the secretariat. NNAG is already working on a strategy for improving neurology services which is to be published shortly. With the NCD of neurology role gone, it is essential that this new group be supported by the Department of Health and NHS England, over and above the secretariat being provided.

Commissioners hold the key to patient care. During the 2012 Lords debate about neurology services, the Government voiced real optimism about the new opportunities provided for patient care by the new commissioning system. In reality, commissioners are confused by the split of responsibility between specialised commissioning, which is the responsibility of NHS England, and other treatments and services, which are the responsibility of the clinical commissioning groups.

This confusion is heightened in the context of commissioning neurological services, as contradictory guidance is given in the materials meant to help decipher this responsibility. The Neurological Alliance has identified situations where neither NHS England nor the local CCG has accepted responsibility for a neurology service, leaving local people without treatment and support. A survey of CCGs by the Neurological Alliance, to which 90% responded, highlights the seriousness of the problem: 85% had not assessed local costs relating to the provision of neurological services; 80% had not assessed the prevalence of neurological conditions in their area; and 80% had not assessed the number of people using neurology services locally. It would seem that the majority of local health commissioners lack a comprehensive understanding of the health needs of an average of 59,000 people in their local populations with neurological conditions. As a result, they simply do not know what neurology services should be commissioned to improve patient outcomes.

A survey by the Neurological Alliance in 2016 showed that almost 20% of patients waited more than a year to see a neurological specialist after seeing a GP. The survey suggests that the problem has worsened, with over 42% of people seeing their GP five times or more before being referred to a neurological specialist, an increase of nearly 10% from 2014. When the PAC heard evidence on the issue of access to neurologists for its 2015-16 report, it was told that not only were there not enough but the existing neurological people were not well dispersed, leaving areas of England without any appropriate provision. The PAC concluded that better deployment of existing neurologists should happen to counter this and that other clinical staff, such as specialist nurses, might do some of the work if services were redesigned. This would be very difficult for specialist nurses. As I know from Parkinson’s nurses, for example, they already have a heavy workload and there are not enough of them; it would be very difficult for them to take on this extra work.

Care plans remain a serious problem. The Department of Health set NHS England the objective that all neurological patients should be offered a personalised care plan for 2015, and yet only 12% of patients have a written care plan. This results in unco-ordinated care. Parkinson’s UK frequently hears of people without access to a multidisciplinary team which would usually co-ordinate care for its patients. Without this team, people with Parkinson’s have to interact with many health and social care professionals across primary, secondary and tertiary care, which leads to duplication of services and support, while wasting NHS resources and providing a poor outcome for that person.

Data are central to driving up the quality of neurological services and the outcomes for patients. Excellent work is being done by, for example, the Neurology Intelligence Network, which identifies and collates indicators of adult neurological conditions. One example of its work is its neurology-focused “commissioning for value” packs produced by the Right Care team, which will give commissioners a huge and much needed opportunity to use local data to identify key improvement areas for neurology services. The right data and intelligence are often vital to support research to develop better treatments and, one day, hopefully, a cure for Parkinson’s and other neurological conditions. Supporting quality in neurology services means supporting research, all of which will boost care outcomes, which is what people want and deserve.

I have posed a number of questions that need to be addressed and I hope that the Minister can respond to them tonight. However, in order to explore them further, will the Minister be prepared to meet with me and others with an interest in this subject at a later date? I look forward to the Minister’s response and to the contributions of other noble Lords.