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Chamber and committees

Meeting of the Parliament (Hybrid)

Meeting date: Tuesday, November 15, 2022

Agenda: Time for Reflection, Presiding Officer’s Statement, Point of Order, Topical Question Time, Gaelic and Scots, Decision Time, Neurological Conditions


Contents


Neurological Conditions

The Deputy Presiding Officer (Annabelle Ewing)

The final item of business is a members’ business debate on motion S6M-06230, in the name of Alexander Burnett, on improving outcomes for people with neurological conditions. The debate will be concluded without any question being put.

Motion debated,

That the Parliament welcomes the publication of the Together for the One in Six report from the Neurological Alliance of Scotland; understands that the report draws its conclusions and recommendations from a survey of over 800 people living in Scotland with a neurological condition; notes that the report found there were delays in the diagnosis of and treatment for neurological conditions; considers that these findings are the result of pre-existing structural problems, exacerbated by the impact of the COVID-19 pandemic; further considers that the Scottish Government’s plan to implement the Strategic Framework for Action on Neurological Care and Support has been delayed, and is unlikely to have achieved its objectives by its end point in 2025; highlights the view that services for children and young people with neurological conditions should be included in future strategic work; understands that the report concluded that there was a lack of data around the wider prevalence of neurological conditions, and notes the view that the Scottish Government must now address this and begin work to develop a comprehensive plan that ensures Scotland, including Aberdeenshire West, has the workforce and resources to support people with neurological conditions now and deliver better outcomes for them in the future.

17:03  

Alexander Burnett (Aberdeenshire West) (Con)

I thank members from across the Parliament for their support in lodging the motion for debate.

The motion speaks to the report, “Together for the One in Six, Findings from the My Neuro Survey in Scotland”, from the Neurological Alliance of Scotland, which is an umbrella body of organisations that represent people who have neurological conditions. I thank the alliance for its hard work and am delighted that some of its members are able to join us in the gallery today.

The report presents findings from a recent patient experience survey. It is the only survey of its kind, exploring the views of people who live with a wide range of neurological conditions, and this was the first time that residents of Scotland participated.

The debate is important because there is a serious lack of funding for care and for data collection, when it comes to neurological conditions, which can be hard to diagnose and treat. A primary recommendation is to improve data collection, so that there is greater knowledge of how many people live with each condition. I understand that the Scottish Government funded the Scottish primary care information resource—SPIRE—to collect such data, but I regret that the data’s publication has already been delayed by six months. In addition, the data considers only primary care. That is limiting and will not give an accurate picture of prevalence.

The Scottish Government’s “Neurological Care and Support in Scotland: A Framework for Action 2020–2025” plans to allocate £4.5 million to improving care for people with neurological conditions. One project is the epilepsy register, which has helped people to understand prevalence and improve outcomes—for example, by identifying unscheduled care and hospital admissions among people with epilepsy and targeting care at those who are at greatest risk of harm.

However, that is just the start. Such an approach needs to be implemented for all neurological conditions. Covid has undoubtedly caused major disruption, but issues with care and treatment extend beyond the pandemic.

According to the survey, 37 per cent of adults in Scotland wait more than 12 months from first symptoms to getting a diagnosis. It is disappointing that the Scottish Government’s framework for action excludes children and young people. I ask the minister to include children and young people in the focus of future projects, because we know that delays for children are worse here than they are anywhere else in the United Kingdom, which is simply appalling.

As for adults, 15 per cent have not seen a specialist nurse for more than a year, and nearly half report delays to routine appointments with neurologists.

Daniel Johnson (Edinburgh Southern) (Lab)

I am someone who experiences such care, and at my annual check-up I often find that the person who I see knows less about my condition than I do. It is important not just that we have routine check-ups but that there is knowledge and expertise of the particular neurological condition for which someone is seeking help and therapy.

Alexander Burnett

I thank the member for his intervention: I will certainly come on to the knowledge gap and hope that the minister will be able to address it, when she speaks.

I have heard from constituents such as Steve, who has sleep apnoea, peripheral neuropathy, autism and functional neurological disorder. He told me that he had to travel to Dundee to speak to neurologists and to move between private treatment and national health service treatment due to long waiting lists and lack of appropriate NHS treatment pathways. Again, that is completely unacceptable.

It is clear that the lack of specialist training and recruitment is key. For example, there are just three private consultants and five NHS consultants at Aberdeen royal infirmary, and they cover not only Grampian but Moray, Orkney and Shetland, because the Scottish Government simply has not allocated appropriate resources to cater to patients’ needs.

For the record, I express my disappointment that the Scottish Government’s “National Workforce Strategy for Health and Social Care in Scotland”, which was published in March, does not mention neurology once.

There are a variety of neurological conditions, including epilepsy, multiple sclerosis, cerebral palsy, motor neurone disease, Parkinson’s disease, ME and others. Such conditions are complex: they can be lifelong and progressive and, in some cases, terminal. Symptoms and progression of conditions vary.

In addition, we do not know the implications of long Covid. I understand that 1 per cent of the survey’s respondents have long Covid and have experienced the same issues with their treatment and care. A child in my constituency who has long Covid is having to seek private appointments in London.

From the outset, patients should be given detailed information to help them to come to terms with their condition and to understand what the future might look like for them and how their symptoms might progress. However, 30 per cent of adults and 38 per cent of children who responded said that they left the consulting room with no information about their condition. Again, that is simply not good enough. Patients are not getting the care and support that they need, and the result is that they do not understand their condition and there is a failure to initiate treatment—with a potential quickening in the progression of their disease.

We need a neurological workforce that is fit for purpose. For example, there is no ME or chronic fatigue syndrome specialist consultant in Scotland, and there is only one specialist nurse. Therefore, care becomes the responsibility of general practitioners, who do not receive adequate training in how to diagnose and manage conditions—that is the knowledge gap to which Daniel Johnson referred.

Training for healthcare professionals is urgently needed, as are early diagnosis and proper management, to give patients the best chance of long-term improvement.

Funding undoubtedly plays a key role. The report from the British Heart Foundation, “Solving the Puzzle: Ensuring the long term stability of Scotland’s medical research environment”, highlighted that the Scottish Government budget for clinical research was just £65.5 million in 2018—and if we account for inflation, the figure has fallen by more than £13 million over the past decade. That amount is much smaller than the funding in the rest of the UK, and we can see the consequences of that—for example, in Scotland, the latest figures for funding for ME is just £1 per patient per year.

To date, £2.2 million of the Scottish Government’s framework for action funding has been awarded to 37 projects, but half of it remains unspent. Therefore, I ask the minister to outline in her response tonight how she will allocate the remaining budget. Will the minister also provide insight into what happens to those projects, and commit to continue funding for neurological care and research after 2025? We still do not know the exact number of people in Scotland who suffer with neurological conditions because there is no adequate data system in place. What we do know is that the lack of research into, and funding for, neurological conditions and treatment is having negative consequences on the care and support that are available to patients.

There is no short-term fix; meanwhile, population data indicate that the prevalence of people living with neurological conditions is increasing over the long term. The five aims of the framework remain as relevant now, post-pandemic, as they were in 2020. To veer off course at this stage would be a disaster and would potentially make things much worse.

Thank you, Mr Burnett. I remind all members who wish to speak in the debate to ensure that their request-to-speak buttons are pressed.

17:11  

Rona Mackay (Strathkelvin and Bearsden) (SNP)

I am pleased to be able to contribute to today’s debate on improving outcomes for people with neurological conditions, and I thank Alexander Burnett for bringing it to the chamber.

The brain is a very complex organ, and neurological conditions vary enormously. Those conditions can be caused by degenerative disease, stroke, accidents, mental ill health and, in rare cases, long Covid. The “Together for the One in Six” report from the Neurological Alliance of Scotland is interesting and extremely informative, and I thank the organisation for its briefing. The alliance says that an estimated 1 million people in Scotland live with neurological conditions including cerebral palsy, stroke, dementia and epilepsy, all of which are life changing.

The report explores the experiences of people with neurological conditions in Scotland, and has gathered data on a wide range of topics, including the impact of Covid diagnosis and treatment, experience of hospital care, support for mental wellbeing, access to social care and welfare, education and employment.

However, the report also highlights issues including lack of staff—which was referred to by Alexander Burnett—and services that are needed to fully support people with neurological conditions. Those things lead to delays in diagnosis, treatment and routine appointments, as well as to difficulties in accessing mental wellbeing support.

Of course, none of those things is good, and the Scottish Government is very aware of the importance of early diagnosis and treatment. “Neurological Care and Support in Scotland: A Framework for Action 2020–2025” was published in December 2019, with £4.5 million of funding being made available over five years to deliver its commitments. It contains five overarching aims to support improvements that span health and social care. They are to

“Ensure people ... are partners in their care and support ... Improve the provision of co-ordinated health and social care and support for people with neurological conditions ... Ensure high standards of effective, person-centred, and safe care and support ... Ensure equitable and timely access to care and support across Scotland”,

and, crucially, to

“Build a sustainable neurological workforce for the future”.

Nineteen projects that support people with neurological conditions are to benefit from Scottish Government backing. The five-year support action plan includes projects that harness new techniques and technology and, of course, continued research into the conditions, which is already producing encouraging results for changing how we approach care of neurological conditions. The 2022-23 award will continue to support earlier projects, and will invest in new schemes such as the Migraine Trust and Epilepsy Scotland, among others.

The neurological action plan provides a clear vision to enable people who are affected to access the care and support that they need to live well on their own terms, and to cater to their own individual needs. However, the Covid pandemic has, as it has on all areas of healthcare, had an unprecedented and massive effect on delivery of the framework. The Scottish Government is committed to implementing all or part of the framework as soon as it possibly can, and it is determined to meet its objectives by 2025. I agree with Alexander Burnett that children and young people must be a priority, so I look forward to the minister’s response on that.

People must be able to access the care, support and information that they need. Information must enable them to understand their condition following diagnosis, and signpost them to relevant resources for their changing requirements.

In Scotland, we are proud that we foster a society that treats all our people with kindness, dignity, respect and compassion, and I am pleased that that is embedded in the framework.

17:15  

Brian Whittle (South Scotland) (Con)

I thank my esteemed colleague Alasdair—Alasdair? I mean Alexander—Burnett for bringing the debate to the chamber and allowing us once again to shine a light on the need for more Government focus on neurological conditions, for which perhaps I need to get checked after that mistake.

In our roles as MSPs, we get exposed to many issues that we have perhaps not considered before, and we have had opportunities to learn more on a diverse range of topics. I got interested in many topics in the neurological field when I was a member of the Public Petitions Committee as we considered petitions related to them. I even launched the national care framework for Huntington’s disease at a Holyrood reception back in 2017.

During a Westminster debate on the subject, Hilary Benn noted that there had been

“a striking unity of purpose and resolve”—[Official Report, House of Commons, 9 November 2022; c 122.]

in both the Scottish and UK Parliaments, and many of us will have spoken in members’ business debates in this chamber on many such topics, from multiple sclerosis to motor neurone disease. We do so because we recognise the importance of bringing those conditions into the light as we seek investment in delivering treatments, and even cures. However, it is only when those conditions hit closer to home that they become real.

A few years ago, I was due to speak in a motor neurone disease debate when, on that very day, I heard from a good friend of mine, Derek Stark, that another friend of mine, Doddie Weir, had been diagnosed with the condition. The news was made all the rawer because I expected to see him that weekend at a charity golf day. Those of us who know him well will know him as a larger-than-life character, a former international rugby player and just a magnificent storyteller. He was down to speak at that event. I discovered that at that time, he was actually on the other side of the world with his family to watch the Lions play in New Zealand, while he still had the capability of creating memories with his family.

As I said, it becomes all too real. Doddie was given probably 18 months to live. However, in true Doddie style, he has tackled his condition in the way that he has tackled life: head on. I have not seen him for quite a while because of Covid. The last time was at an event for MND, when he was still walking and talking and taking the Mickey out of all of us. It was great to see him on Saturday on the pitch at Murrayfield; it made me realise that it has been a while.

Early on in his diagnosis, Doddie was very frustrated with slow progress in the development of a treatment for MND and related conditions. He decided to form the My Name’5 Doddie Foundation to try and help fund research for a cure, knowing that it would come too late for him—I think that that is quite remarkable. His foundation has raised a significant seven-figure sum, all of which will go to help deliver a cure and support for MND.

Doddie’s journey, along with the journeys of other sporting sufferers such as Rob Burrow, and the way in which the cause has been galvanised by the sporting world is such an inspiration.

Alexander Burnett spoke about the “Together for the One in Six” report from the Neurological Alliance of Scotland, which highlights the significant work that needs to be done by Governments, including the Scottish Government, in matching the drive and ambition of Doddie and his friends. Progress is far too slow, not because of a lack of know-how, but because of a lack of research funding, which is a drag on potential breakthroughs. Diagnosis is too slow, as is access to treatment, which is so important with these life-limiting conditions.

For a number of years, there has been a call for GPs and other medical staff to be given the knowledge that they need to recognise the symptoms and to treat them as soon as possible. Surely it is time that that was acted upon.

There is a huge mental health component to a diagnosis of a neurological condition, and we know how stretched mental health services are at the moment. With such life-shortening diagnoses, one would hope that mental health services would be readily available. The report, unfortunately, says otherwise.

I conclude with Doddie’s words:

“My attitude is you should do what you can today and worry about tomorrow when it comes. This is the card I have been dealt, so I shall just crack on.”

It is time that the Scottish Government and other Governments cracked on, too. Doddie and his like are truly inspirational. Sporting communities have rallied round and done immeasurable work to highlight these issues. Will the Scottish Government accept that same challenge?

17:19  

Jackie Baillie (Dumbarton) (Lab)

I think that, in future, we should all refer to the member who just spoke as Bob Whittle.

I congratulate Alexander Burnett on securing this important debate on improving outcomes for people with neurological conditions. I also congratulate the Neurological Alliance of Scotland on the publication of “Together for the One in Six”, which is an important piece of work that marks the first time that fieldwork in the area has extended beyond England to provide a UK-wide survey and give us an important picture of the situation across the country.

As we heard, neurological conditions are those that affect the brain and spinal nerves. As the title of the report suggests, one in six people in the UK suffer with a neurological condition. We suspect that that is vastly underestimated.

Living with a neurological condition can be difficult and debilitating. More than 80 per cent of the adults and 95 per cent of the children who were consulted in the survey said that their condition negatively impacts their mental health.

The Scottish Government’s approach to supporting people who live with a neurological condition is patchy, at best, and I hope that the minister will acknowledge that there is considerable room for improvement. We have heard, outside and inside the Parliament, impassioned pleas for better support from people who are suffering with ME, long Covid, MS and Parkinson’s, among many other conditions.

The motion that I lodged last year on the need for specialist Huntington’s disease services received the support of 99 MSPs, but action has been slow. I would welcome the minister outlining how she will ensure that every area of Scotland gets—at last—the specialist Huntington’s care and support that is required. That was promised by the Scottish Government, which backed the national care framework for Huntington’s disease. However, the areas with the greatest need for support—NHS Borders, which has no HD specialist, NHS Forth Valley, which has no community-based HD specialist, and NHS Tayside, which has no formalised HD clinical lead—are still suffering from a lack of provision.

“Together for the One in Six” outlined that, although the pandemic has undoubtedly played a part in worsening the outlook for people with neurological conditions, the challenges were around long before Covid-19 first appeared on the horizon. There is also no doubt that the cost of living crisis will exacerbate the challenges, because it disproportionately affects people with neurological conditions.

As we have heard in the debate, data, workforce, mental health support and access to early diagnosis and services are of key importance. The statistics are bleak. As Alexander Burnett said, 50 per cent of adults experienced delays in accessing routine appointments with their specialist nurse. Some 30 per cent of adults and 38 per cent of children left the consulting room with no information about their condition and no idea where to go for further support, and 69 per cent of patients were not able to access specialist support when they needed it. We do not have up-to-date, accurate figures on how many people suffer from neurological conditions. If it is important, let us count it: we need data, because that is how we plan services.

Campaigners were fighting for action on the matter long before this debate, but the sense of urgency has never been greater. It is not good enough to leave people bearing the weight of neurological conditions without access to services and support. Up and down the country, people with neurological conditions feel ignored. They want and deserve to see action from this Government. At the very least, they want the Government to spend the money that Alexander Burnett highlighted as being underspent in the budget.

That is where the recommendations from “Together for the One in Six” come in. They are all actions that the Scottish Government can take now. The Neurological Alliance of Scotland has done the heavy lifting for the Government. It has spelled out what is needed. It is now up to the Government to act.

I hope that the minister will commit to seeing those actions through, for all people who live with a neurological condition and for the people who might one day receive such a diagnosis.

17:24  

Rhoda Grant (Highlands and Islands) (Lab)

I thank Alexander Burnett for bringing the debate to the chamber. The “Together for the One in Six” report from the Neurological Alliance of Scotland has highlighted a number of worrying issues, and I will draw on two examples from my constituency to give a bit of context.

The first example relates to essential tremor. I have raised the issue of making magnetic resonance-guided focused ultrasound—that will be the last time that I say that in the debate—available on the NHS in Scotland for essential tremor patients. The issue was raised by my constituent Mary Ramsay in her petition to the Parliament. We have the equipment and the skills available in Scotland, yet we are referring—and paying for—patients to be treated south of the border because MRGFUS is available on the NHS in England.

Despite the long waiting lists in Scotland for deep brain stimulation, the Scottish Government refused to support the roll-out of MRGFUS on the NHS, although it is a less invasive and considerably less expensive procedure, which is available in Dundee. I hope that, next March at the drop-in event in the Parliament, the cabinet secretary will meet those who deliver MRGFUS treatment.

I turn to the provision of MS specialist nursing. Clinical standards were launched in 2009 to set out the level of care that people with MS should expect. The MS Society Scotland estimates that around 15,750 people in Scotland are living with MS, and the prevalence of MS in the Western Isles is among the highest in the world.

In 2011 in Parliament, I raised the issue of an MS specialist nurse for the Western Isles and, subsequently, an MS specialist nurse post was created in the Western Isles, in line with every mainland health board in Scotland. However, NHS Western Isles has now chosen to cut its specialist MS nurse post, along with its specialist epilepsy nurse, and replace them with a more generalist advanced neurology nurse. That was done without consultation with local people or national stakeholders, including the MS Society Scotland, which had provided pump-prime funding for the post initially.

The case load for that one generalist advanced neurology nurse has increased significantly—right now, it is estimated that that nurse supports 1,000 patients. The recommended case load for one nurse who is treating just MS patients is around 315, and that is with additional support that is not available in the Western Isles. Even under the NHS Western Isles proposal to have two full-time general neurology nurses, the case load is still far too high. I am concerned that the decision, which was made without consultation with patients, will be copied throughout Scotland, placing standards of care and accessibility of treatment at risk.

Let me be clear: the decision is one that does not save money; rather, it increases the cost and burden on the NHS. In a cost of living crisis, surely we should be supporting more localised delivery of specialist services. MS specialist nurses play a vital role in helping those who live with MS to access important rehabilitation, treatment and disease-modifying therapies that are shown to reduce the progression of their MS. Removing and reducing access to that vital care is putting patients at risk.

The evaluation project, generating evidence in MS services—GEMSS—suggests that on average, each MS specialist nurse saved £77,400 per year. I ask the Government to live up to its promises and ensure that MS nurse posts are retained.

17:28  

Daniel Johnson (Edinburgh Southern) (Lab)

I thank Alexander Burnett for bringing this important matter to the chamber. It gives me great pleasure to take part in his debate, given the work that he carries out through the cross-party group on autism. I direct members to my entry in the register of members’ interests—I am very pleased to be the vice chair of the ADHD Foundation.

I come from a perspective and with a knowledge of neurodevelopmental disorders and I apologise if I stray into those issues, which I think are very much neurological conditions. Given the broad range of neurological conditions, which encompasses epilepsy to autism, motor neurone disease to cerebral palsy, conditions that are lifelong to those that are sudden onset, and those that are chronic but stable to those that are degenerative and ultimately fatal, we need a broad understanding of the broad range of requirements that people have and the help and assistance that they need. It strikes me that the point that Alexander Burnett made in his introduction is therefore vital: we are talking about a broad range of conditions and needs, therefore we must have data. If we do not have data, we cannot ensure that we are addressing those conditions properly and properly providing services.

Data is not just important in itself. The act of capturing that data and screening it can help individuals. That is something that is well known and has long been called for. We frequently miss the opportunities to identify individuals who are at risk at the point that they come into contact with public services. We must capture the data not only to inform public policy, but in order to help individuals.

There is a real cost of not understanding these conditions, and certainly the conditions that I know most about. If we look at the criminal justice system, we see profound public policy failure. Around 25 per cent of the prison population is estimated to have attention deficit hyperactivity disorder, compared with 5 per cent of the general population; 50 per cent of the prison population is dyslexic, compared with 15 per cent of the general population; autism is about three times overrepresented in the prison population; and 60 per cent of the prison population have suffered a traumatic brain injury.

That is shocking. It is a sign of public policy failure and I would say that it is a sign of injustice. It is something that we need to correct, and unless we understand the problem and collect the data, we will never be able to do that. I ask the minister to say in her remarks whether there is an opportunity for those issues to be included, or at least thought about, when the Government makes its recommendations for a commissioner on learning disability, autism and neurodiversity. If not, they need to be given some consideration.

The issue is not just about ensuring that there are services and treatment for people, but about wider public policy. We are talking about conditions that are very often invisible disabilities, and therefore the issue is not just about services and treatment, but about making wider public policy decisions to maximise accessibility and ensure that people can lead a normal day-to-day life.

I echo and reinforce the points that have been made around access to diagnosis. The survey work is welcome, but it grossly underestimates the severity of the problem. My casework is full of people who are not just struggling to get a diagnosis or assessment within 12 months, but struggling to get it within two or even three years. That is an appalling failure. We cannot help people until they get the diagnosis that they need and understand their condition. The waiting times that people are currently experiencing are unacceptable. I would be very grateful to hear from the minister what is being done to improve waiting times for assessment.

I call Maree Todd to respond to the debate.

Your microphone is not switched on, minister.

17:33  

The Minister for Public Health, Women’s Health and Sport (Maree Todd)

Many apologies for that rookie error, Presiding Officer.

I am absolutely delighted to respond on behalf of the Government to this important motion. As we continue to reform the delivery of health and social care in Scotland, I have been keen to hear at first hand about the neurological community’s experiences and priorities. That is why we funded the Neurological Alliance of Scotland to facilitate a patient experience survey. We actively supported the alliance to produce the “Together for the One in Six” report and I discussed its findings with the cross-party group on epilepsy in June.

We want to know about people’s experiences. We want to know where the gaps are. We want to improve services. We want to understand the experiences of those accessing care in Scotland, so that we can work in partnership to identify good practice and to drive up standards.

The timeframe for the report encompasses the most severe pressure that our NHS has ever seen. We know that people have faced delays to diagnosis and treatment. We know that further action and investment is needed to ensure that people with neurological conditions access timely diagnosis and care, and we are working hard to address that through strategies such as our NHS recovery and workforce plans.

That is why our NHS recovery plan is backed by more than £1 billion of funding over five years. The plan will support increased diagnostic procedures and in-patient and out-patient activity in order to increase capacity and address backlogs of treatment as we work towards achieving the 12-week treatment time guarantee.

Through our neurological care and support framework, the Scottish Government and the centre for sustainable delivery are addressing workforce issues and care pathways. Through that neurological improvement work, we are supporting NHS boards to appoint the right staff, address neurology waiting times and improve training and career pathways.

Despite the disruption to health and social care services during the pandemic, we have sustained our efforts to deliver the commitments in our neurological framework. The focus of and funding for the framework have been maintained, and we have spent more than £2.1 million over the past two years on work to improve neurological care across Scotland. The work that has been commissioned has a wide scope and reach, and it will have a direct impact on improving patient care and support through patient and carer information, better integration of services, improving care pathways and workforce capacity planning.

The framework was published in 2019, and the health and social care landscape has significantly changed because of the pandemic. The shifting infrastructure has brought new challenges in implementing aspects of the improvement work. In the light of that, we are continually assessing how we prioritise and focus our efforts to best effect. Under the guidance of our national advisory committee for neurological conditions, we are prioritising the outcomes that will have the most impact. Despite those difficulties, we have demonstrated substantial progress and, in July, we published a mid-point report that sets out the significant impacts that have been made to date and the on-going work to bring about lasting improvements to neurological services.

Today, my colleagues have urged for better data collection, and I am pleased to say that a search of the Scottish primary care information resource data system has been completed for neurological conditions. We will publish new prevalence data for such conditions on 13 December, which will help to support future service planning.

Brian Whittle

Daniel Johnson said that neurological conditions are far too overrepresented in places such as prisons. As part of the work that the minister mentioned, will the Scottish Government consider how investment on one side of the ledger affects what happens on the other side of the ledger? That would allow us to continue to invest more in addressing neurological conditions.

Maree Todd

I am keen to look at how we invest money that will have the greatest impact. That is not about just the clinical impact; we will look at person-centred care and take a holistic approach in considering the entirety of people’s needs.

There are challenges. We are talking about neurological care today, but I know that there is a big overlap with neurodevelopmental conditions. I think that Daniel Johnson was largely talking about the overrepresentation of neurodevelopmental conditions in prisons. The important thing is ensuring that individual patient needs are met and that we are able to treat people holistically in a person-centred way, wherever they present.

Daniel Johnson

I clearly pointed to TBI, which certainly has neurological aspects. We absolutely need to take a holistic approach, but it is also key to think about how, when people come into contact with public services and bodies, we use that as an opportunity to help them and to capture data in order to better understand the situation. That is important whether it relates to the Scottish Prison Service or the health service. Does the minister agree?

Maree Todd

I absolutely agree. There is a real opportunity to improve prisoners’ health during their time in prison and to make an impact on their lives that will last way beyond their stay in prison. I could not agree more with that.

Alexander Burnett raised the issue of the workforce plan. Although the NHS recovery plan and the workforce plan were not condition specific, the aim is to effect whole-system recovery and support prioritisation and planning. I mentioned our national advisory committee for neurological conditions, which is identifying priorities to strengthen the neurological workforce, alongside the national workforce strategy, the remobilisation plan and the rehabilitation framework.

Alexander Burnett

Because we are so near the end of the debate, I will be so rude as to repeat the substance of the main question, which I asked, Jackie Baillie asked and the people in the public gallery have come to ask, too. Will the minister commit now to allocating the remaining £2.3 million by 2025?

Maree Todd

On allocating the remaining funding, we are continually assessing how we prioritise and focus our efforts, under the guidance of the national advisory committee members, some of whom are also in the public gallery. They are guiding us and prioritising the actions that will have the greatest impact for people who are living with a neurological condition.

I absolutely endorse the process that the minister outlined, but the question is simple—is the money still available to be spent?

Maree Todd

Yes, the money is still available to be spent, but we want to spend it with the greatest impact.

I will quickly cover a couple of other points that have been raised. I have met the Scottish Huntington’s Association to discuss the points from Jackie Baillie’s motion. Since 2015, we have committed more than £500,000 of funding to the association for work towards the development of a national care framework and to support the organisation’s specialist support devices and its initiatives to raise awareness of the condition.

On patient information provision, through the neurological framework, we are funding several projects to improve the provision of good-quality information to people with neurological conditions. We are also working with NHS Inform, which is a fabulous platform and is, basically, our Scottish NHS on the web. We are working with consultant neurologists and third sector partners to review and create content on neurological conditions for that website. New and updated pages have been published for conditions such as MS, epilepsy, functional neurological disorder and Huntington’s disease.

Because I have taken a few interventions, I am a little short of time. I thank everyone who contributed stories and experiences and I close by returning to the findings of the “Together for the One in Six” report. We know that data is not just data, because human stories and individual experiences are behind the numbers. I assure everyone that we will continue to work with the data, in order to understand the underlying factors, and to listen to lived experience as we develop solutions. We will also continue the improvement work that we have begun through the framework, by collaborating with partners across the statutory and third sectors, in order to achieve better outcomes and maximise the quality of life for people with neurological conditions.

Meeting closed at 17:42.