Parkinson’s Nurses

– in the Scottish Parliament on 18th June 2013.

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Photo of Elaine Smith Elaine Smith Labour

The final item of business is a members’ business debate on motion S4M-06551, in the name of James Kelly, on Parkinson’s nurses in Scotland providing effective, safe, person-centred care. The debate will be concluded without any question being put.

Motion debated,

That the Parliament welcomes the report, Parkinson’s nurses in Scotland: providing effective, safe, person-centred care, which outlines what it considers the central role of Scotland’s Parkinson’s nurses in helping people with Parkinson’s to manage their condition; understands that these specialist nurses make financial savings to the NHS by preventing unnecessary hospital and care home admissions, reducing waiting times, improving symptom control and medication management and supporting people to manage their own condition; understands that there are about 10,000 people with Parkinson’s in Scotland and that this number is expected to increase over the coming years; supports the Healthcare Improvement Scotland clinical standards for neurological health services, which state that everyone with Parkinson’s should have access to a Parkinson’s nurse from the point of diagnosis onwards; understands that Parkinson’s UK has made significant investment in providing pump-prime funding to develop Parkinson’s nurse posts across Scotland; welcomes the progress that NHS boards have made and continue to make in providing access to Parkinson’s nurses, with recent appointments in NHS Ayrshire and Arran, NHS Borders, NHS Dumfries and Galloway, NHS Grampian and NHS Lothian and active negotiations underway in NHS Highland and NHS Western Isles; understands that, despite this progress, there are some areas of Scotland where it is difficult or impossible to access a Parkinson’s nurse, and looks forward to a future where everyone with Parkinson’s has ongoing access to a Parkinson’s nurse, no matter where they live.

Photo of James Kelly James Kelly Labour

I welcome the opportunity to open this evening’s members’ business debate and thank members from across Parliament for signing the motion, thereby enabling me to bring it to the chamber. I also welcome the many campaigners from Parkinson’s groups across the country who have made it to Parliament to lobby members and watch the debate. As the political parties gear up for the Aberdeen Donside by-election in two days, they might learn a trick or two from the Parkinson’s campaigners, who have been very effective in making known their views and lobbying many MSPs face to face this afternoon.

Given the significant impact that, as I am sure MSPs know from speaking to the campaigners, Parkinson’s disease has on the lives of constituents and their families, it is important that we as parliamentarians take the issue very seriously. More than 10,000 people in Scotland suffer from Parkinson’s—it affects one in 500 people—but I am well aware that in Rutherglen, Cambuslang and Blantyre in my constituency the number of sufferers is the best part of 200, which is higher than the average for the country. The issue was first brought to my attention by my constituent, Harry Hay, who is in the gallery this evening. Mr Hay pressed his case in a very articulate and strong way, and since then I have been very vocal for increased resources in my area to support people who have Parkinson’s.

Many of the issues are highlighted in Parkinson’s UK’s recent report, which comes on the back of the NHS Scotland report on neurological issues. Of the two key indicators in the NHS Scotland report that relate to Parkinson’s, the criteria for access to specialist Parkinson’s disease services are not met by five health boards and the criteria for on-going management of Parkinson’s disease services are not met by 10 health boards. Clearly, therefore, there is a big job to be done in health boards across Scotland. In my previous members’ business debate in 2008, I spoke about the importance of people with Parkinson’s receiving their medication on time, but it is obvious from speaking to people who are involved that that issue still needs to be addressed by the NHS.

For the people in the gallery tonight, the central issue is the importance of Parkinson’s nurse specialists. Figures that have been provided by the Scottish Parliament information centre show that Scotland has only 20 such nurse specialists to cover 10,000 people, so that resource is not adequate. A recent Parkinson’s UK report draws attention to the National Institute for Health and Care Excellence recommendation that Parkinson’s nurse specialists should have a maximum caseload of 300 patients, whereas the statistics show that each nurse is covering at least 500 people. That is certainly the case in NHS Lanarkshire, which not only fails to meet the NHS Scotland report criteria on Parkinson’s but, unfortunately, has only two specialist nurses who have a caseload of 1,000 patients. Clearly, more priority needs to be given to the issue not just in NHS Lanarkshire but throughout the country.

Among other issues that the Parkinson’s UK report highlights as needing to be addressed by health boards is the importance of telemedicine and of virtual teams. Especially in rural areas, such teams can do a lot to support people who have Parkinson’s. A crucial issue is the link between general practitioners and the specialist nurses, which really must be reinforced. If GPs have proper awareness of the issue, they can detect the condition early and flag up appropriate treatment, which can help in management of the condition.

Another area that needs to be examined—but which is often overlooked—is data collection. It is important that we collect appropriate data on the condition because it can help us to identify best practice in management of it.

It is important to emphasise that, properly managed, all those things together would save the NHS money. If we can treat people who have Parkinson’s better and keep them in their homes rather than in NHS hospitals, that will not only save health boards money but will take some of the stress away from families.

Clearly, the priority must lie with the NHS, but the Government also has an important role in leadership and co-ordination. The Scottish Government recently allocated £4 million for treatment of people who have long-term conditions. Part of that is for policy development, which is welcome because it is important; clearly, some of the issues that are outlined in the Parkinson’s UK report show the need for more policy development. NHS boards need to be more aware of the issues and to give them greater priority. In the context of last week’s coverage of NHS continuing care and mistreatment, in some cases, it is also worth mentioning that some of those may involve people who have Parkinson’s. It is important that we have a proper process to examine when people have been mistreated and are due reimbursement.

Those are big issues that affect many people in constituencies and regions across the country, so it is important that we speak up and speak out. There is an absolutely key role for NHS boards. It is important that we use this evening’s debate to get across the campaigners’ message that health boards must take the issue more seriously. We want urgent and practical action.

I thank members for their support.

The Deputy Presiding Officer:

We turn to the open debate, in which speeches should be of four minutes.

Photo of Margo MacDonald Margo MacDonald Independent

I feel as though I have wandered into a meeting of Alcoholics Anonymous. “I am Margo and I’ve got Parkinson’s.” Excuse me if I do not shake all over the place, because it just so happens that that is under control, so I should be able to comment on one or two things.

I have never tried to make myself an example to people who have Parkinson’s, because everybody who has Parkinson’s has a different form of it. There is no use in saying to someone, “There’s so and so. Why aren’t you like them?”, because they are not like so and so, they cannot be, and why should they be? That is something that rather appeals to me—the independence of it.

James Kelly would probably agree that a greater awareness is required among the general public, because there is unknown territory in regard to Parkinson’s. It is one of those things that people do not want to get, and they are not quite sure what they have got until they are diagnosed. I certainly was not at all sure what it was until I was diagnosed, and then I found out that it was not actually as bad as I had thought; I found out that I could just get on with my life. People have to make certain adaptations, but we have to do that anyway as we get a little older—not that I am meaning to get any older but, if I get older, I expect that I will have to adapt some things.

More research is needed into the whole business of Parkinson’s. I know that there is some wonderful research being done, but I would like to see a bit more. It seems that we have waited a long time for breakthroughs in relation to the condition.

The really important thing that James Kelly highlighted is a simple thing: the link between GPs, patients and specialist nurses. I regret to say that, in some areas, GPs have not kept up with developments, so I hope that they take that as me chiding them and immediately get to know all about Parkinson’s and about the specialist nurses—who are too few in number, from the point of view of a Parkinson’s sufferer. There are many competing claims for the priority choices that are made by health boards. I understand that, but that is where the people in the gallery come in. The campaigners are the ones who are solidly out in front calling for Parkinson’s to have higher priority than it has, or are highlighting something that makes changing the rules or the law urgent. I pay full tribute to the campaigners on the condition; they can expect to be doing even more in the future, because there will be even more competition for resources.

I wish that I had longer, because I would tell members terrible sad things, but I do not. Thank you, Presiding Officer.

Photo of Stewart Stevenson Stewart Stevenson Scottish National Party

Let me start by congratulating James Kelly on giving us the opportunity to have the debate tonight. I have not signed the motion; that is down to pure inadvertence and was certainly not deliberate. Because I was speaking in another debate in the chamber this afternoon, I was unable to hear Harry Hay and the many other people in the gallery, but I am absolutely sure that they put their points across extremely well.

I congratulate Parkinson’s nurses throughout Scotland. Neither of my predecessors in the debate made reference to the service to the carers of those who suffer from Parkinson’s, which is part of the service that is delivered by those nurses. As with many long-term conditions, it is unlikely that Parkinson’s is something that a person suffers alone; it is shared with many others around them.

In NHS Grampian, which is the health board that covers my constituency, we are relatively fortunate in having four Parkinson’s nurses. James Kelly highlighted the briefing by Parkinson’s UK for his work with NHS Lanarkshire, and I hope that he continues with that.

We meet Parkinson’s in many different circumstances, and of course not all tremors are Parkinson’s related, and not all Parkinson’s sufferers suffer from a single disease.

The effects of the disease were brought home vividly to me on a nine-hour flight when I was sitting beside someone who I believe probably had Parkinson’s—they certainly had a tremor that continued for nine hours. I did not get to sleep, but I thought about how lucky I was to have only nine hours of mild inconvenience, whereas the person sitting beside me had a substantial difficulty that he would experience for a long time.

There are many causes of Parkinson’s. My father, who was a GP, always worried that my mother would develop it as a by-product of having had diphtheria when she was a child. Many of the causes are not so obviously connected to something like that. Research is comparatively modest, compared to other areas, perhaps because there does not seem to be too great a prospect of financial benefit to the pharmaceutical companies from curing the disease or developing Parkinson’s-specific drugs. There are lots of treatments for the symptoms, which vary from person to person, but not a lot is spent on considering bigger and bolder interventions that might make a real difference to the people who are represented in the gallery today.

I have always taken an interest in mental health in particular; in a significant proportion of cases, diseases such as Parkinson’s are accompanied by mental ill-health. When people are struck from out of the blue by a disease, at the age of 50 or 60—or younger, when they still expect many years of productive life—there can be a mental impact as well as a physical one. I hope and believe that the Parkinson’s nurses will address that as well.

On carers, I hope that we will hear in the debate that carers are an important part of the support that can be given to Parkinson’s sufferers.

I end by once again congratulating James Kelly and Parkinson’s nurses on the work that they have done.

Photo of Malcolm Chisholm Malcolm Chisholm Labour

I congratulate James Kelly on introducing this important debate, and I welcome the Parkinson’s campaigners who are in the gallery today, some of whom I was pleased to speak to an hour or so ago. It is important for politicians and health professionals to listen to and learn from patients. The clearest message that came from the campaigners today was that Parkinson’s nurses are absolutely central to their care. To an extent, I was not surprised by that, because, in relation to many diseases, I have come across patients who say that the clinical nurse specialist is the person who really matters to them. For example, at last week’s meeting of the cross-party group on cancer, which was about brain tumours, people said that, with all of the problems that they suffered, the rock upon whom they depend is the clinical nurse specialist. Of course, a Parkinson’s clinical nurse specialist has specific functions, and I heard about those today.

The campaigners impressed upon me the importance of ready access to the nurse specialist when there are any problems. In general, they said that the nurse would ensure that plenty of time was made available to discuss the issue that concerned them.

The specific issue that I was asked to raise with the minister is funding for nurse specialists. We must pay tribute to Parkinson’s UK, which put a lot of pump-prime funding into new posts. The assurance that the campaigners and, indeed, MSPs, seek today is that the Government will ensure that health boards will pick up the funding in due course. That is the nature of the arrangement that Parkinson’s UK has come to with the various health boards. Clearly, it would be good to know about future funding.

That issue is related to the number of nurses. We are told that the NICE guidelines suggest that there should be one nurse for every 300 patients with Parkinson’s. I know that, in Lothian, there are three nurses for 1,700 people with Parkinson’s, which suggests that there should be more. That said, the service in Lothian, as elsewhere, was highly praised by the people who spoke to me.

We know how important clinical nurse specialists are in helping to join up care. People often talk about fragmented care, but the nurse specialist can liaise with all of the various health professionals and social care workers who might be involved, and can help to join up care for the patient.

Photo of Margo MacDonald Margo MacDonald Independent

On the subject of care and carers, I would probably not get my tea tonight if I did not say what a wonderful carer I have at home. It is a serious point. The three nurses in Lothian are worked off their feet. They are very good nurses and there is a good communication system, but there will never be enough—that is the point that I was trying to make. I would like training in caring to be extended to the carers—people who will not become professional carers but who could receive some additional knowledge through that route.

Photo of Malcolm Chisholm Malcolm Chisholm Labour

I thank Margo MacDonald for making that important point. It is not unrelated to one of the many other roles of the clinical nurse specialist, which is to train and educate other health professionals. Part of that role may involve carers as well. I pay tribute to all the nurses, who are so highly valued by people with Parkinson’s disease.

The motion encapsulates much important health policy. I congratulate James Kelly on formulating it and on managing to include issues such as patient-centred care, self-management and avoiding unnecessary hospital admissions. Those have all been great and important objectives of health policy for many years, although they have not always been successfully realised. The motion also mentions the neurological standards, and I am sure that the minister will address those in his winding-up speech. They have been important in driving up standards of care. I note—as others will, I am sure—that three of those standards are about Parkinson’s nurses and how all boards should have them as key members of the multidisciplinary team. I am glad that my own health board, NHS Lothian, does. However, as Margo MacDonald has said, there is always room for more. I hope that it will be possible for the minister to give us some positive messages about future funding for that vital role.

Photo of Dennis Robertson Dennis Robertson Scottish National Party

I, too, thank James Kelly for lodging this important motion and welcome those in the public gallery this evening. Like Malcolm Chisholm, I was fortunate enough to meet some of them in committee room 1 earlier. The short time that I had with the people from Dyce and Banff, which is just outside my constituency, was a time of laughter and looking at where they are with their condition, not just as patients but with their carers.

It is always a pleasure to hear Margo MacDonald. I often think that she does not get enough time to speak in the chamber, but when she is given the opportunity she takes full advantage of it.

Stewart Stevenson mentioned the very important role of carers, and I was delighted to see patient-centred care at the heart of the motion. It takes me back to my earlier profession in social work, as we have to look at who is at the centre of the care that is being provided. We are very fortunate in the NHS Grampian region because, as Stewart Stevenson said, we have four specialist nurses and a support nurse.

Malcolm Chisholm mentioned Parkinson’s UK and the pump-prime funding that is going on. That funding has created a two-year post for a specialist nurse in Moray, in the Grampian region, and that is to be welcomed because it is providing the necessary specialism that people need.

Education and awareness must be at the forefront of what we do. We ask a lot of our GPs. Many times, I have said in the chamber that GPs need to be more aware, but I have a great deal of sympathy for them sometimes. We must recognise that if they do not have the knowledge, they must know where to go to seek that knowledge. The matter should not be put to one side; the GP must recognise that the patient has an issue and maybe a problem. Early diagnosis is important in ensuring that patients get the best possible care.

When I was talking to the small group in the committee room, what came across was the importance of getting medication at the right time during treatment. I know Parkinson’s, because my father has had it for more than 20 years. He is an ex-trawlerman and when he came on shore, he worked at the council in the parks. He was a very active man. When he contracted Parkinson’s, there was a physical change and a mental change, but he then realised, “I’ve got to adjust. I’ve got to live with this condition. I’m not going to sit down and say I’m nae able.” We started laughing in the committee room when we talked about that. It is not about sitting back and saying, “I can’t do it.” People have to have a positive attitude. That is what the specialist nurses bring to the patient group and the carers. They have a can-do approach. It is about saying, “This is how we can live with the condition. This is how we can adjust our lives to the condition.” Patients might reach a plateau in that adjustment and then, all of a sudden, the condition deteriorates and they think, “We have to adjust again, because we owe it to ourselves as individuals and to our family and those who care for us.”

Once again, I thank James Kelly for lodging this important motion and I certainly congratulate all those who have managed to come to the chamber this afternoon, because a journey is not always easy for people with Parkinson’s.

Photo of Nanette Milne Nanette Milne Conservative

Like others, I congratulate James Kelly on securing parliamentary time to discuss the report “Parkinson’s nurses in Scotland: providing effective, safe, person-centred care”. I thank him and Parkinson’s UK for organising this afternoon’s drop-in event so that we could hear at first hand from patients and their carers in our constituencies and regions who are benefiting from the support that Parkinson’s specialist nurses provide to them.

Healthcare Improvement Scotland underpins the importance of the nurses by stating in its clinical standards for neurological health services that everyone with Parkinson’s should have access to a specialist nurse from diagnosis onwards. The report gives excellent examples of the work that they are doing in different parts of Scotland.

In my region, Parkinson’s nurses in Angus have set up review clinics, which are significantly reducing the time between referral and treatment. In one year, that saved consultant time that was equivalent to 100 new referral appointments, which enabled speedier diagnosis and allowed improvements in other areas of the service.

In Grampian, the nurses are working with the clinical effectiveness team to produce a medication audit that will help them to develop a protocol for surgical patients with Parkinson’s on a nil-by-mouth regime and to ensure that in-patients are visited by a Parkinson’s nurse within 48 hours of admission, or before elective surgery. Given how important it is for Parkinson’s patients to receive their medication at the proper time, the benefits of such a protocol should be significant.

The Grampian nurses have developed a course for patients who are newly diagnosed with Parkinson’s, which has been well received by patients and has led to some of them meeting regularly for peer support. The nurses are providing regular review clinics in care homes, when they see patients in their familiar surroundings and supported by care home staff. That initiative has resulted in more relaxed patients and fewer missed clinic appointments.

There are many examples across Scotland of the effectiveness of Parkinson’s nurses, who are helping patients and their carers to manage their condition in the community, reducing hospital admissions and delaying the need for admission to a care home setting.

Photo of Dennis Robertson Dennis Robertson Scottish National Party

The member mentioned people managing their condition. Does she accept that many people with Parkinson’s have other conditions that compound their Parkinson’s? They might have angina, heart conditions, diabetes and arthritis—some of which my father has, too.

Photo of Nanette Milne Nanette Milne Conservative

Absolutely—I agree with Dennis Robertson. The situation will only get worse as more of the population get older and have complex medical needs.

Unfortunately, Parkinson’s nurses are not yet available to patients in every part of Scotland, although the picture has improved significantly, largely due to the commitment of Parkinson’s UK, whose investment in pump-prime funding for Parkinson’s nursing posts has led to the creation of specialist posts in several health board areas, including Angus in the North East Scotland region.

In the decade since I became an MSP, I have never ceased to be impressed by the commitment and effectiveness of specialist nurses, not only for Parkinson’s but for other long-term conditions, such as multiple sclerosis, chronic obstructive pulmonary disease, epilepsy, diabetes and asthma. I am in no doubt that, if we could achieve nationwide coverage of such specialist nursing posts, there would be an enormous benefit not only to patients and carers but to the public purse through savings in acute hospital admissions. I have often said that I could almost use the same speech in most members’ business debates on health matters, as the core issue tends to be patchy provision of service or the so-called postcode lottery of care.

The debate has highlighted one extremely effective group of specialist nurses, who are of enormous benefit to the increasing number of people with Parkinson’s and to their families and carers. I look forward to the day when all patients who are diagnosed with the condition get the access to the Parkinson’s nurse care that they need and deserve. I wish to see a similar roll-out of specialist nursing services for the many patients with other long-term conditions, such as those to which I referred earlier. I commend James Kelly’s motion and I thank Parkinson’s UK and Scotland’s Parkinson’s nurses for their commitment to and care of people in Scotland who are diagnosed and coping with this debilitating and progressive condition.

Photo of Drew Smith Drew Smith Labour

When I spoke to my constituents at the drop-in session this afternoon, they asked whether there would be any heckling in the debate—in fact, they encouraged it—but, unfortunately, consensus has broken out. Like other members, I thank James Kelly for bringing the debate to the chamber and I thank the Parkinson’s UK campaigners for coming along to the Parliament to put their case.

As we have heard, up to 100 people are diagnosed with Parkinson’s every year. It is a progressive, fluctuating neurological condition that can affect all aspects of daily life. The severity of the symptoms can fluctuate from day to day and can change rapidly during the course of the day. As Margo MacDonald said, there is no cure for the condition and probably not enough research has been done on it.

James Kelly said that one person in every 500 has Parkinson’s, which is about 10,000 people across Scotland. As the Scottish population ages, the prevalence of Parkinson’s will increase. Parkinson’s UK estimates that the number of people with the condition will increase by 20 per cent by 2020. However, we should remember that not everyone is diagnosed with Parkinson’s in later life. One constituent to whom I spoke at this afternoon’s drop-in session was diagnosed at 35, after five years of being tested for other conditions.

Nanette Milne is right that the Parkinson’s UK report gives many examples of the great work that Parkinson’s nurses do across Scotland. I suspect that not least among them is Jackie at the Lightburn hospital in Glasgow’s east end, who explained to me much of what I have just said. There is good provision in Glasgow in some respects, but it is not good enough, although it is perhaps better in some areas. I know that Jackie has a case load of about 450 patients. I express my gratitude for the work that the nurses carry out to make the lives of patients and their families better. At what must be a stressful time, the nurses provide specialised care and support for families who receive a Parkinson’s diagnosis.

About one in four people in Scotland with Parkinson’s is admitted to hospital at least once a year. More than half those admissions are unplanned, and one in every 10 people with Parkinson’s is classified as being at high risk of hospital admission in the next year. However, as I and, I am sure, other members heard this afternoon, Parkinson’s nurses can help people to avoid and reduce hospital stays and the risks that are associated with them. The nurses are trained to identify risks and they can intervene early to prevent crisis admission. They can also support patients—for example, with their medication—once they are admitted.

The Parkinson’s nurse team for NHS Ayrshire and Arran estimates that, over 18 months, it has prevented 15 hospital admissions of people with Parkinson’s by intervening early, which is a saving of approximately £39,000. Parkinson’s nurses can support hospital discharges—that ensures that patients move back home with appropriate care plans in place and thereby reduces the risk of readmission.

People with Parkinson’s might need medication six or seven times a day or, as I heard this afternoon, up to 10 times a day. As with any condition, missed medication can be serious. The report found that Parkinson’s nurses have used innovative ways to prevent adverse medication incidents. For example, in Dumfries and Galloway, a daily email alerts system has been set up that highlights the admission of a person with Parkinson’s to hospital. In Lothian, the nurses have developed an e-module that outlines the importance of giving medication on time.

My health board—NHS Greater Glasgow and Clyde—has eight specialist nurses, who work across the board area. The report highlights how the Glasgow nurses have developed joint clinics with mental health services to address cognitive and mental health symptoms. Those joint clinics have led to a more efficient use of mental health service time; they have also increased the Parkinson’s service capacity to manage complex mental health symptoms effectively.

I recognise the good work that Parkinson’s nurses do. Their support and advice have probably been invaluable to the families who have benefited from them up and down the country.

Parkinson’s UK is calling for more nurses; it has said that the nurses should have a workload of no more than 300 cases at any one time, as recommended by NICE. I hope that the Scottish Government can consider those calls and I look forward to a future in which everyone has on-going access to Parkinson’s nurses.

Notwithstanding some of the negatives that are associated with the condition, we have all heard this afternoon that it is possible to have a quality of life with Parkinson’s. As Dennis Robertson suggested, that hope should certainly be our objective after the debate.

Photo of Michael Matheson Michael Matheson Scottish National Party

I congratulate James Kelly, as other members have done, on securing time for this important debate on how we can provide support to patients and carers of those who have Parkinson’s disease and how we can continue to improve the way in which we deliver that care and support, in particular within the NHS in Scotland.

James Kelly referred to the fact that all MSPs will have constituents with the condition. I have no doubt that there are members in the chamber who have close personal experience of the disease—some closer than others. One of my own close friends, who is still relatively young, was diagnosed with Parkinson’s disease a couple of years ago. Another friend of mine who had Parkinson’s disease has passed away.

Margo MacDonald summed up the matter very well when she suggested that, although the disease has particular characteristics, the experience of it is personal: it affects every individual in a different way. We cannot underestimate the personal impact that it can have on an individual and their ability to lead as independent a life as possible. It is important that we look for what we can do to try to support individuals to manage their condition clinically, support them socially and emotionally and support their carers when appropriate.

I very much welcome the report that has been published by Parkinson’s UK. It makes a very helpful contribution. Although we continue to welcome the progress that has been made and acknowledge the support that Parkinson’s UK provides, we also recognise areas where further progress needs to be made and where the level of service is not what we would wish.

Photo of Margo MacDonald Margo MacDonald Independent

Is it within protocol for the minister to tell us where Parkinson’s comes in the pecking order as regards the campaign for funds internally in the department?

Photo of Michael Matheson Michael Matheson Scottish National Party

I can give Margo MacDonald an exclusive revelation: there is no pecking order. We do not have a hierarchy of conditions, or decide that one is more important than another. We deal with issues on their merits, although there are some conditions where there is a greater demand for services, which I am sure she will recognise.

James Kelly and Malcolm Chisholm made reference to the way in which we have sought to drive up standards in the NHS in relation to how we provide services to individuals with neurological conditions, through the clinical standards for neurological health services.

An important part of that work was the review to which James Kelly referred, which compared boards and the level of service that they offer for a range of different neurological conditions. The review established that a number of boards do not provide the specialist nurse provision or the specialist services for people with Parkinson’s that some other boards provide. That piece of work was specifically designed to demonstrate that variation, so that we could see the gaps and the action that needs to be taken to make sure that boards start to provide those services.

Having conducted the peer review around neurological standards, we then set about putting in place the national neurological standards advisory board, which exists to make sure that we continue that progress across all health boards in Scotland and continually improve how we drive forward provision. That work is taking place just now. Three of the neurological standards are specific to Parkinson’s disease, and Parkinson’s UK is a key part of the national advisory group. It is helping with that work so that we continue to see improvements.

Alongside that, it is important to recognise that although we can see improvements at secondary care level, we need to see improvements at the primary care level within GP practices. We need to provide GPs with the right support and advice in their management of individuals who have Parkinson’s disease. With reference to Stewart Stevenson’s point, we also need to recognise the role of carers in supporting the individual in the management of their condition.

That brings me to specialist nurses. Members who attend many of the health-related members’ business debates in this Parliament know that very few of the debates that deal with specific conditions do not include in the motion a request for more specialist nurses. We now have almost 1,600 specialist nurses across the NHS in Scotland, covering a wide range of different conditions.

The real value that can be delivered by the provision of specialist nurses is not in dispute. The work that Parkinson’s UK has taken forward in partnership with some of our health boards is greatly valued because it drives the provision of Parkinson’s nurses in individual board areas. Once a specialist Parkinson’s nurse has been provided and there is a clear need for that service in an NHS board area, and once the pump-primed funding has come to an end, I expect health boards to continue with that service provision to ensure that patients do not see any reduction in the service that they receive. If possible, boards should be augmenting that provision to improve the overall service.

I recognise that specialist nurses have an important role to play. Members will also agree that there has been a call for greater provision of specialist nurses in a wide range of conditions. There has been an increasing trend in that regard in recent years, which I expect to continue in NHS Scotland for neurological conditions such as Parkinson’s disease.

Margo MacDonald was correct to point out that there is a need to look at training individuals such as carers and other members of the social care workforce, as well as our healthcare workforce, so that they have greater awareness and understanding of Parkinson’s disease and the needs of patients and their carers.

Photo of Margo MacDonald Margo MacDonald Independent

I apologise for intervening again, Presiding Officer, but it might be an important point. One of the things that carers could do to help generally with the wellbeing of the person for whom they are caring is give simple massage. That is the sort of thing that could be taught to a carer in the home. It would cut back expenses and make life a lot more pleasant, and I would like it, please.

The Deputy Presiding Officer:

Minister, I would be grateful if you would begin to come to a conclusion.

Photo of Michael Matheson Michael Matheson Scottish National Party

I will skip past Margo’s request for massage.

It is important that we consider the health and wellbeing of carers as well, and provide them with the support that they need. Margo MacDonald is correct. Some of the work of the Long-term Conditions Alliance is about looking at what we can do to support more effectively individuals who have long-term conditions.

I hope that I have given some assurance that we recognise the value of specialist nurse practitioners. There has been a move towards using them more and I would like to see more of them being provided by the NHS in the coming years. The Scottish Government is committed to continuing to work with Parkinson’s UK to make sure that the progress that has been made is built on and that we continue to provide the best possible service to those who have Parkinson’s disease in Scotland.

Meeting closed at 17:44.