Neurological Conditions

Baroness Fraser of Craigmaddie Excerpts

Thursday 9th June 2022 Grand Committee

[Baroness Fraser of Craigmaddie (Con)]

I thank the noble Lord, Lord Dubs, for securing this important debate. It is, unfortunately, late on a Thursday afternoon, but as he said, it coincides with the publication of the joint patient experience survey, undertaken for the first time by all four Neurological Alliances from across the UK. I declare lots of interests: I am a trustee of the Neurological Alliance of Scotland, I am chief executive of Cerebral Palsy Scotland and I chair the Scottish Government’s National Advisory Committee for Neurological Conditions.

As part of that, this debate and survey took me back to work undertaken in 2018 with the Scottish burden of disease study, which highlighted not only the invisibility of neurological conditions but, to use the not very good language of the study, the “burden” of living with a long-term, complex condition, and the burden that already places on health and care services. This population live for a long time and are already using health and care services, but are invisible. Improvements are therefore difficult to make because of that invisibility. The conclusions and recommendations of the Neurological Alliance survey illustrate how services are patchy and fragmented, but they give us a barometer for where to concentrate action. I have three areas for action that I would like to highlight.

First, we have to better understand prevalence. Data on numbers of all neurological conditions remains woeful. The data we do have is mostly estimates. We seriously underestimate prevalence due to the inaccurate and inconsistent way that neurological conditions are recorded across all healthcare settings. We have to look at the system of coding: how do we make it simpler?

At Cerebral Palsy Scotland, we have campaigned for the development of a national cerebral palsy register, building on existing work from Queen’s University Belfast, supported by the Northern Ireland Government, and work undertaken by the Welsh Government. Working on the principle that if you are not counted you do not count, part of ensuring better services is to prioritise reliable data in order to plan not only for future services but for future workforce needs.

Secondly, we have to deliver seamless care between the different parts of the system and to take a more holistic view of the workforce. It is important to look beyond neurologists. People with neurological conditions come into the NHS through numerous routes. That is part of the problem. The role of the consultant neurologist is to exclude conditions and to provide a diagnosis. It is important that this should be achieved as quickly and as efficiently as possible. However, since people with neurological conditions can live for many years post a diagnosis, the important question is: who will deliver their care? It will not be the neurologist.

As the noble Lord, Lord Dubs, outlined, clinical nurse specialists are key to managing care for some conditions, MS being one of them, but sadly too many other conditions do not have clinical nurse specialists and are therefore left out. We need to be more imaginative about roles and responsibilities in multidisciplinary teams and in planning for future workforce needs, and perhaps to work more collaboratively with other areas, such as MSK and stroke services.

The majority of health and care services required by this population are provided by primary and community care services and by AHPs. People with cerebral palsy, for example, rely on regular access to physiotherapy to prevent further deterioration and to stay well, but access to neuro physios and other rehabilitation services is completely inadequate and comes nowhere near the standards and guidelines set by NICE for adults with CP. It is the same for many other neurological conditions.

The Question refers to services covering the whole of health and care. As the noble Lord, Lord Dubs, also mentioned, this is Carers Week. Carers are an integral part of this workforce too. But I believe that anybody—health, care or social workers—who has any input into delivering care for someone with a varied and complex condition must have access to information and training about that condition. Far too often, it is left to the third sector to pick it up in a piecemeal and underfunded way that cannot hope to reach all those in need.

Thirdly, support for mental health needs to be provided at diagnosis. It has to be an integral part of condition management for children and adults. Too many people, children in particular, report that their mental health needs are not being met at all. If raised with professionals, their concerns are dismissed as being just a part of their condition that they have to live with. There are, in theory, a range of mental health services that can be accessed by people with neurological conditions but, again, there are huge variations in equity of access, both geographically but also for the different conditions.

To address the issues highlighted in the Neurological Alliance’s survey, we require leadership and vision. Will the Minister therefore commit not only to taking up the challenge of the noble Lord, Lord Dubs, but to developing an overall strategy to support people with neurological conditions? In Scotland, we already have the framework for action for neurological care and support, which I was involved in creating. The ambition must be that health and care services support people with neurological conditions to live well on their own terms, with access to the right person at the right time and in the right place. This is essential. I look forward to supporting the Government in achieving this ambition.