Meeting date: Tuesday, April 30, 2019
Meeting of the Parliament 30 April 2019
Agenda: Time for Reflection, Topical Question Time, Music Tuition in Schools, Business Motion, Decision Time, Parkinson’s in Scotland
- Time for Reflection
- Topical Question Time
- Music Tuition in Schools
- Business Motion
- Decision Time
- Parkinson’s in Scotland
Parkinson’s in Scotland
The final item of business today is a members’ business debate on motion S5M-15746, in the name of Miles Briggs, on Parkinson’s in Scotland. The debate will be concluded without any question being put.
That the Parliament understands that Parkinson’s is the second most common neuroprogressive condition after Alzheimer’s; recognises that it has a profound impact on people with the condition, and their close friends and family; welcomes what it sees as a comprehensive new report from Parkinson’s UK, People. Parkinson’s. Scotland. What do we know about services and support for people with Parkinson’s in Scotland?; notes with concern that it suggests that there are about 12,400 people in the country with the condition and that this is expected to increase by 40% within 20 years; acknowledges the view that the Scottish Government, NHS boards and health and social care partnerships must plan now to meet the care needs of the growing number of people with Parkinson’s; accepts that it is a very complex condition with over 40 recognised symptoms, which can affect every aspect of daily living and can require ongoing support from a multidisciplinary team of health professionals; understands with concern that 10% of neurologist and medicine for older people consultant posts in Scotland is currently vacant and that waiting times are growing; believes that Scotland has fewer Parkinson’s nurses than it needs and that, in NHS Lothian, NHS Lanarkshire, NHS Highland and NHS Forth Valley, there are reportedly about half the number of required nurses; understands that around one in every five people with the condition has extremely high levels of care need; believes that it can be challenging for people with Parkinson’s to access the information, care and support that they need to maintain their independence and prevent emergency hospital and care home admissions; celebrates what it sees as the excellent work that is carried out by NHS and social care professionals across the country to provide better support for people with Parkinson’s and their carers, including as members of the UK Parkinson’s Excellence Network, and applauds the efforts of Parkinson’s UK’s small team of staff and over 300 volunteers to support everyone in Scotland who is living with the condition.17:02
I thank colleagues from across the chamber for supporting my motion, which has allowed me to bring the debate to the chamber this evening. I pay tribute to the excellent work of Parkinson’s UK in Scotland, and commend for their efforts all those who work, volunteer and fundraise for the charity, including many people in my Lothian region.
We will all have a family member, friend or colleague or will know someone in our community who has Parkinson’s. It is a condition that can be utterly devastating for many individuals and their loved ones. Many of us remember with great fondness our colleague Margo MacDonald. Those of us who were lucky enough to know her saw at first hand how she did not allow her Parkinson’s to define her. I know that Margo is still very much missed by her close friends—including you, Presiding Officer.
Parkinson’s is the second most common degenerative disease after Alzheimer’s, and about 30 people in Scotland are diagnosed with it every week. Although it is most associated with old age, one person in seven with Parkinson’s is under 65. That is another reason why I campaigned for and welcome the extension of free personal care to under-65s.
More and more of us can expect to have direct or close experience of Parkinson’s as the number of people who have it is expected to increase by 40 per cent within the next two decades, so we all want to ensure that the best possible health and support services are available for people with Parkinson’s, and those who help to care for and look after them. Anyone who reads Parkinson’s UK’s detailed and comprehensive report “People. Parkinson’s. Scotland. What do we know about services and support for people with Parkinson’s in Scotland?” will share my concerns that Scotland is not providing the level and quality of services and support that every person with Parkinson’s deserves. I note that 20 per cent of people with Parkinson’s have extremely high levels of care need.
Parkinson’s UK has talked about
“a Scotland-wide under-provision of services for people with Parkinson’s.”
It is therefore alarming that about one in every 10 consultant posts in neurology and medicine for older people is unfilled, with particular pressures in some areas meaning that the numbers of vacancies in some national health service boards are even worse.
On waiting times for new out-patient appointments ahead of diagnosis, the vast majority of boards are regularly unable to meet the 12-week target. In July last year, it took more than 42 weeks for 95 per cent of people who had been referred to see a neurologist in NHS Grampian, and the wait was almost 33 weeks in NHS Greater Glasgow and Clyde.
Most people who are living with Parkinson’s will say that the most important person who helps them to live with their condition is their Parkinson’s nurse, but although Scotland should have at least 40 full-time Parkinson’s nurses, we have fewer than 30. Only one health board—NHS Western Isles—has adequate specialist Parkinson’s nurse provision, and in four mainland health boards, including NHS Lothian in my region, there are about half the number of nurses that they should have. That means that local Parkinson’s nurses are often dealing with many more patients than the recommended maximum case load. NHS Lothian has three nurses who are responsible for helping almost 1,800 patients, when Parkinson’s UK recommends
“a maximum case load of 300”
for each full-time nurse in an urban area. In Orkney and Shetland, there are currently no Parkinson’s nurses at all. The situation is letting down people with Parkinson’s and our NHS staff, and often adds to the pressures on general practices.
Ensuring that we have an adequate number of neurologists and Parkinson’s nurses in all parts of Scotland must be a priority for the Government. I continue to call for a review of all specialist nurse provision in order to ensure that we can plan for future need and put in place the number of nurse specialists that we require today. I hope that Scottish National Party ministers will look at that call again.
The report makes key recommendations across a range of areas, including good practice in multidisciplinary teams and mental health teams, self-management, enabling technological innovation, and anticipatory care planning.
I will talk briefly about access to advanced treatments for Parkinson’s. Sadly, for a few people, the standard Parkinson’s medication does not work effectively, and they can have very severe symptoms, including painful cramps and being unable to move or having uncontrollable movement. Those patients need access to advanced treatments, which can include deep-brain stimulation surgery or advanced medications that are delivered by injections or pumps. People who are in that position are concerned that the new national deep-brain stimulation centre in Glasgow has incredibly long waiting times—currently more than a year for assessment and surgery. Therefore, it is clear that more theatre capacity and staff capacity are needed in order to further develop that vital treatment.
In addition, not all NHS boards are providing access to apomorphine injections or pumps, and there are huge variations in prescribing them. We also need more of the specialist support that is required to initiate and monitor people’s use of apomorphine, where it is being provided.
Although Duodopa, which is a treatment that delivers an infusion of medication to the intestine, has been approved by the Scottish Medicines Consortium, only three people have been able to access the treatment in Scotland since 2016. We need to better understand why more patients who have a very low quality of life are not being offered the treatment. It can and does have a transformative effect on patients’ lives, as one of my constituents in Edinburgh, David Taylor, who is a Falklands veteran, has testified. I am interested to hear from the minister in his closing speech about what plans the Scottish Government has to advance such Parkinson’s treatments.
I commend again Parkinson’s UK and the 13 clear and positive recommendations that it has produced in its very useful and important report. People who are living with Parkinson’s across Scotland are looking for ministers and Parliament to set out how they will take forward improvements, so that everyone who is diagnosed with Parkinson’s can be confident that they will have access to the very best possible healthcare and support.17:09
I congratulate Miles Briggs on securing the debate, which provides an opportunity to discuss the valuable and comprehensive report into Parkinson’s in Scotland, just a few weeks after world Parkinson’s day on 11 April.
Parkinson’s is the second most common neurodegenerative condition after Alzheimer’s, and its complex and progressive nature can have profound effects, with its symptoms and impacts affecting every individual differently.
For many years, Parkinson’s UK has given voice to sufferers and has supported them in all aspects of life. Through the weekly meetings of its Ayrshire branch and Isle of Arran group in my constituency, to its monthly massage sessions, to Zumba and pilates classes and to its working age Parkinson’s group, many people with Parkinson’s in Cunninghame North have benefited directly from its work over the past 50 years.
Parkinson’s UK’s collective experience of working directly with people in Scotland means that it is well placed to feed back to policy makers about how we can better support people who are affected. Its report, “People. Parkinson’s. Scotland. What do we know about services and support for people with Parkinson’s in Scotland?” was published in February, and has been backed by leading neurologists. A key report recommendation, which is highlighted in Miles Briggs’s motion, is that we ensure that everyone with Parkinson’s has regular and easy contact with a specialist Parkinson’s nurse at every stage of their condition, wherever they live. People with Parkinson’s frequently say that their nurse specialist is the person who makes the single biggest difference to them in managing life with the disease. The value of nurse specialists’ work cannot be understated.
The report highlights that across Scotland there should be at least 40 Parkinson’s nurses; instead, there are fewer than 30. Indeed, Ayrshire has the equivalent of two nurses, whereas it should have 3.3 nurses to serve adequately the estimated 1,000 people living with Parkinson’s in Ayrshire. I have engaged with NHS Ayrshire and Arran and the Scottish Government over several months, and I am pleased that the health board is redesigning its Parkinson’s service into multidisciplinary teams. Those will provide assessment and support to people living with Parkinson’s, thereby freeing up specialist nurses to see newly diagnosed patients who are at an advanced stage, and those with particularly complex needs.
However, I still support calls to increase specialist nurse provision. I was therefore pleased when the Minister for Public Health, Sport and Wellbeing, Joe FitzPatrick, confirmed that the Scottish Government is working with partners and stakeholders to develop nursing roles to meet Scotland's future needs, under the transforming roles programme. As part of that, a working group will consider the clinical nurse specialist role to ensure that it is nationally consistent, sustainable and progressive. I hope that that working group will, ultimately, help to bolster the number of specialist nurses in Ayrshire and across Scotland.
In Ayrshire, there is currently one consultant geriatrician with an interest in Parkinson’s, and members of the Ayrshire working age Parkinson’s group do not get consultant appointments as often as they feel is necessary. NHS Ayrshire and Arran has tried numerous times to recruit a second consultant, but with no success, which has given rise to concerns about how high-quality support for Parkinson’s disease sufferers in Ayrshire can be sustained without increased specialist staffing, especially given that patient numbers are expected to increase by 40 per cent in the next 20 years.
Ayrshire’s recruitment difficulties are not unique: one in 10 consultant posts in neurology and medicine for older people in Scotland is currently unfilled. One detrimental effect is that waiting times for first appointments are lengthening, which is leaving people with suspected Parkinson’s facing longer periods without a treatment plan or a diagnosis to explain worrying symptoms. Scotland can and must do better for the thousands of people with Parkinson’s by making necessary preparations now to ensure that health boards can recruit the neurological consultants that they need. The Scottish Government has already committed to supporting a review of consultant neurologists’ and neurophysiologists’ roles to make posts more attractive. That should bring more people into neurology and help to retain them.
I am pleased that the Scottish Government is now considering responses to its consultation on the draft national action plan on neurological conditions, and I look forward to its publication later this year. I am confident that the plan will respond positively to concerns and recommendations of Parkinson’s UK and others who provided expertise and experience throughout the consultation process.
I echo Miles Briggs’s sentiments towards the hardworking staff and dedicated team of volunteers who make Parkinson’s UK’s life-changing work a reality. The guidance and support that they provide is second to none and has immeasurably improved the lives of people with what is a complex and often devastating condition.17:13
I, too, congratulate my colleague Miles Briggs on securing time in the chamber for the debate.
As we have heard, Parkinson’s disease is a degenerative neurological condition that predominantly, although not exclusively, manifests itself in the older generation. Given that, as we are all aware, our population is growing older, it is reasonable to assume that the incidence of conditions such as Parkinson’s will also grow.
If we look at the progress in treatment of conditions such as cancer in the past couple of decades, we can see that science is remarkably capable of finding solutions, yet when we compare treatments and medication over the same period for neurological conditions, we see a very different picture. It is obvious that such conditions have not had the same priority in drug and treatment development.
Most members will know that my personal interest in neurological conditions sits with motor neurone disease, which was first brought to my attention by Gordon Aikman, shortly followed by Doddie Weir—two remarkable men who raised awareness and fought for better treatments for those who will follow, all the while battling against this cruel and degenerative condition.
It is hard to hear Doddie say:
“it will come too late for me but I want to make sure others have a better chance than me.”
We should stop to think about what he is saying: the disease will take him but, even knowing that, he is prepared to use his time effectively to campaign for those who will follow him. He has already confounded medical wisdom not just by being here, but by still being on his feet and speaking with such passion and humour, or so he seems to think.
Before I learned about these cases, I was pretty unaware of such conditions. Remarkable as Gordon and Doddie are, it should not be left to them and others like them to bring the conditions into the public consciousness. Like Parkinson’s, MND makes sufferers unsteady and it can affect their speech. I remember hearing Gordon speaking about the fact that many people just assumed that he had drunk too much alcohol, which was an assumption born out of ignorance.
We need to be more aware and, in being so, recognise the need to advance medical science in the understanding and treatment of neurological conditions. Organisations such as Parkinson’s UK, MND Scotland and the My Name’5 Doddie Foundation have a huge role to play in that fight, and we thank them for the work that they continue to do.
Surely, though, it is time for Governments—I say Governments—to step up to the plate and take a swing along with those organisations. If we are to rid ourselves of—or, at the very least, help to contain—these hugely debilitating conditions in a short time, it will take a collective effort from all of us. If that challenge is not accepted, the issues will only grow, given the country’s ageing demographic, as I mentioned at the start of my speech.
Will the minister, in his summing up, say whether the Scottish Government will commit to working with the third sector organisations that are leading the charge? I ask the Government to play a significant role and to detail what its commitment will look like.17:16
I, too, thank Miles Briggs for bringing this important debate to the chamber. I welcome the staff from Parkinson’s UK, those who are living with Parkinson’s and their friends and family who are here this evening, and I thank those who are listening to the debate on television. It is down to the constant support of Parkinson’s UK and the dedicated activism of volunteers that, each and every day, we are closer to finding a cure for this debilitating disease.
As Miles Briggs’s motion rightly points out, more than 12,000 people in Scotland are living with Parkinson’s—that is about one in every 375 adults. Findings from Parkinson’s UK show that, each week, about 30 people are diagnosed with the disease. That means that, every week, the lives of 30 people, as well as the lives of their families and friends and their communities, are changed forever. Each diagnosis affects the patient and their support network differently. Parkinson’s UK and hundreds of local Parkinson’s support groups provide invaluable support for sufferers.
However, given that the number of diagnoses is predicted to increase by about 40 per cent in the next 20 years, the Scottish Government and our health boards need to step up to the plate. Currently, a number of Scottish health boards have half the number of Parkinson’s specialist nurses that are needed. It is deeply concerning that about 10 per cent of neurologist and older people consultant posts in Scotland are vacant. In NHS Greater Glasgow and Clyde, which covers my constituency, there are the equivalent of seven full-time Parkinson’s nurses for the more than 2,000 Parkinson’s patients that the health board covers. The nurses are spectacular and do a tremendous job, but there are not enough of them.
I fully support the findings of the Parkinson’s UK report, and I echo its calls for the Scottish Government not just to meet the organisation, but to discuss the implementation of the 13 recommendations. I recognise that there is great complexity to the disease. There are more than 40 known symptoms, but that is not an excuse for inaction; instead, it underlines why we need to take action now. It is down to each and every one of us in the chamber to provide the support to do so.
I will spend the rest of my time talking about the fantastic work that is carried out by the Helensburgh and Dunbartonshire Parkinson’s support group. More than 150 people in my constituency are living with the disease, and the group provides a constant source of help and support to them. During Parkinson’s awareness week, the group took to the streets and collected an incredible £1,100 for research.
The group understands exactly what those living with Parkinson’s disease and their families need in order to make day-to-day life more manageable. It runs weekly tai chi lessons—which I am tempted to join in—because it understands that movement and balance exercises help with many of the most common Parkinson’s side effects. Tai chi is also beneficial to mental health and wellbeing, which understandably are another aspect of an individual’s health that can be affected by a Parkinson’s diagnosis. The group also runs a number of trips and social events which allow people with Parkinson’s to get together, socialise and share their experiences. I understand that strong drink might be taken, Presiding Officer.
When I spoke to the group to ask if there was anything in particular that they wanted me to raise in this debate, the message was clear. They said, “We need more research projects in Scotland. We need shorter waiting times for neurology appointments and more Parkinson’s nurses and multidisciplinary teams for Parkinson’s care.” That is not me making a political point as a politician; the points are from a group of people who are united by a goal to find a cure for Parkinson’s and to make living with it more bearable. I urge the Minister for Public Health, Sport and Wellbeing and the Scottish Government to listen to those who understand the impact of a Parkinson’s diagnosis the most. The time to act is now.17:21
I warmly congratulate Miles Briggs on his motion and on securing the debate. I also thank Parkinson’s UK in Scotland for an excellent briefing and for its work all year round to raise awareness of Parkinson’s and highlight the steps that need to be taken to provide the services that we need now and in the future. I echo Jackie Baillie’s encouragement to the minister to meet Parkinson’s UK to discuss the report and the implementation of its key recommendations.
I took part in a similar debate last week to mark multiple sclerosis awareness week, and there are obvious similarities between the two neurological conditions. Both are complex and very specific to each individual, and both can be devastating across the board in their effects. Similar numbers of people are impacted by the conditions, but the projection for Parkinson’s of a 20 per cent increase over the next decade and a 40 per cent increase over the next 20 years is a truly alarming prospect and underscores the importance of taking steps to make sure that we have services in place to meet the growing demand.
The services that we need are specialist, because we cannot simply rely on a generic model, important though that support will be. Workforce planning is essential, because we are already seeing lengthy waits for neurological appointments across the country and a lack of full-time Parkinson’s nurses to meet current demand, as other members have observed.
Reading the briefing, I was struck by the scale of the mental health dimension. The figures are staggering: 50 per cent of people with Parkinson’s experience anxiety, 40 per cent suffer depression and a third have dementia. There cannot be a one-size-fits-all approach Scotland-wide, because we need flexible models of care. Parkinson’s UK in Scotland is right to say that
“services need to be matched to the needs of people locally and the local situation”.
Although the way in which the service is delivered may differ across the country, the quality and accessibility of that service must remain consistent. At present, Orkney has no resident consultant and relies on NHS Grampian, which is already under serious pressure to meet demand in the Grampian region. That is perhaps no great surprise, but there is also no specialist Parkinson’s nurse in Orkney, although a specialist MS nurse is available to patients. We rely on a Parkinson’s nurse who is based in Aberdeen and who does what she can to provide excellent support, but on-going support at such a distance presents challenges. An elderly constituent about whom I was made aware recently became extremely unwell because of his Parkinson’s medication. His GP was unable to sort out the problem, given its specialist nature, and his situation got progressively worse over a number of weeks. It was not until the Parkinson’s nurse was able to make the trip up from Aberdeen that a proper assessment could be made, a change in treatment recommended and a reduction in the severity of my constituent’s symptoms achieved. That is simply not good enough.
I am therefore grateful to Parkinson’s UK for the efforts that it has been engaged in through the local Parkinson’s community in Orkney. A recent meeting in Kirkwall was extremely well attended, and there was a real appetite for establishing drop-in events as well as tailored exercise classes for people with Parkinson’s, to match what we have heard exists in other parts of the country.
There is also a strong demand for a locally based Parkinson’s nurse to work in collaboration with other health professionals and allied health professionals. I understand that that was the subject of discussions between Parkinson’s UK and medical and nursing directors at NHS Orkney last week. I have been told that those discussions were positive and that a shared business plan is being developed with a view to working out how to proceed thereafter. I look forward to supporting those efforts.
In the meantime, I thank Miles Briggs again for bringing this debate to the Parliament, and I thank Parkinson’s UK in Scotland for the support that it continues to provide to those who are affected by Parkinson’s.17:25
I refer members to my entry in the register of interests. When I was elected to Parliament in May 2016, I had the privilege of being employed by Parkinson’s UK. Obviously, I relinquished that post following the election.
I, too, thank Miles Briggs for lodging the motion, which has provided members with the opportunity to highlight the health and care challenges that are faced by the more than 12,000 of our constituents who battle Parkinson’s every day. As we have heard, that number is set to rise by a fifth within the next decade and by 40 per cent within two decades.
Many of the growing number of our constituents who live with Parkinson’s will have some or all of its debilitating symptoms. Maybe they will have a tremor, muscle stiffness or slow movement. Many may not have those symptoms, or they may have some or all of them to varying degrees or even at different times. How Parkinson’s affects people differs from person to person, often from day to day, and even from hour to hour. That is why the care that is provided to a person with Parkinson’s needs to be personal, specialist and tailored to the individual. However, we know from far too many of our constituents that, despite the often heroic efforts of our health and social care workers, the care that is received by many who live with Parkinson’s does not always meet their individual needs.
The financial cuts that are faced by our health and social care partnerships, the shortage of doctors and specialist nurses, and the rising waiting times are all are laid bare by Parkinson’s UK in its “Parkinson’s. People. Scotland.” report. We can see examples of those things in our own constituencies.
For a number of years, a recruitment crisis in NHS Ayrshire and Arran has left the region with just one specialist consultant geriatrician with an interest in Parkinson’s instead of three, who works with just two Parkinson’s nurses. As a result, some patients with Parkinson’s have reported waiting more than a year for an appointment with their consultant. That has deprived them of the vital specialist care that they need.
Good work is taking place in NHS Ayrshire and Arran to try to mitigate those problems and improve services for people with Parkinson’s. In particular, the development of multidisciplinary teams is an important step towards delivering more integrated, person-centred care. However, even the most effective service redesign is not a substitute for adequate resources.
Parkinson’s is a complex condition that requires specialist care. The expertise of consultants and Parkinson’s nurses is essential, but, too often, that is just not available as quickly or as easily as it needs to be.
In large parts of the South Scotland region, there are also serious challenges relating to rurality and isolation. Around 12 per cent of people with Parkinson’s live in remote or very remote communities. That can create an additional barrier to accessing the specialist care that is needed. I know about the fantastic work that the small team of two Parkinson’s nurses does in Dumfries and Galloway to ensure as best as it can that care is available across the region to those who live in rural and remote areas, despite the challenges that that poses.
Support is not provided only by our health and social care services, of course. I mentioned earlier that I had the privilege of working for Parkinson’s UK. I doubt that I will ever come across a more caring, compassionate and professional group than the small team at Parkinson’s UK in Scotland. It really does punch above its weight in supporting people with Parkinson’s, often in truly innovative ways, such as in the recent campaign to raise awareness of Parkinson’s. Buildings were lit up blue, including in the artists’ town of Kirkcudbright, where the Parkinson’s UK fundraiser Jan Mattison and the local community lit up the whole town with examples of Billy Connolly’s artwork. That gave a new meaning to the big yin turning the air blue.
A small army of volunteers supports the work of the charity. It is a truly humbling experience to work with those volunteers, who often live with Parkinson’s themselves or care for a loved one who lives with Parkinson’s, and to realise that they have given up their time to help others through running a local support group, for example.
I am delighted to see that the number of support groups continues to grow, including through the launch next month of a young persons’ Parkinson’s cafe in Dumfries, to complement the excellent support group that is already in the town.
I want to say a heartfelt thank you to Parkinson’s UK in Scotland and to the hundreds of volunteers for their dedication and support to all those who live with Parkinson’s in my constituency and across Scotland. I urge the Government to show that same commitment, implement the recommendations of the “People. Parkinson’s. Scotland.” report and help to ensure—in the wise words of Parkinson’s UK themselves—that we can bring forward
“the day when nobody fears living with Parkinson’s”.17:30
I am pleased to be able to respond on behalf of the Government, and to add my congratulations to Miles Briggs on securing this debate.
The Scottish Government wants people with Parkinson’s to be active citizens, to participate in and contribute to our society, and to maintain their dignity and human rights. I therefore join other members in paying tribute to the support that Parkinson’s UK in Scotland and others offer to help people with Parkinson’s to live as well as possible for as long as possible.
I thank members from across the chamber for their considered contributions, and I will talk about a couple of those now.
Liam McArthur spoke about matters in his constituency. I had the privilege of attending NHS Orkney’s annual review and meeting one of the patients who used the specialist multiple sclerosis nurse. It was really interesting to hear how important that service was, so I completely understand the desire for a specialist nurse to be available to people with Parkinson’s in the northern isles. As is often the case, Mr McArthur illustrated many of the points that I wanted to make—in this instance, on the fantastic on-going work on how the issues in Orkney can be addressed. There is definitely some particularly good teamwork going on up there to try to ensure that people with Parkinson’s and other neurological conditions get the best possible support.
I was particularly interested to hear the examples from Jackie Baillie’s constituency. I will not rehearse them, because she gave them perfectly, but they provide me the opportunity to talk about another example of more holistic and non-clinical support. I am going to refer to a tweet from sportscotland, which I think was in response to last Thursday’s debate on sport. It is a hangover from that, but it really shows how sport, physical activity and health can all come together. Sportscotland was tweeting about a boxing club in Glasgow, Rock Steady Boxing, which it says is
“fighting back against Parkinson’s with a revolutionary exercise programme which is having dramatic results”.
That is important, because it is not all about clinical intervention; wider support is required. That goes back to the points that members made about how Parkinson’s UK in Scotland pulls together a partnership approach with so many organisations, for so many people.
As we heard from Jackie Baillie and others, Parkinson’s is a complex and progressive condition that currently affects more than 12,000 people in Scotland. We also heard that, over the next 20 years, its prevalence is forecast to increase rapidly. We recognise that demand for support is growing faster than our traditional services were designed for, and change is therefore essential. The principles of the integration of health and social care support are central to that, and it involves a greater emphasis on joined-up services for people who need to access them and a focus on anticipatory and preventative care. The integration of health and social care support is therefore one of the most significant reforms of public services in Scotland. It is about ensuring that services are suitable and sustainable for the future, enabling those who use them to get the right support. A number of members made the point that that has to be personalised support, whatever the patient’s needs are at any point in their care journey.
Brian Whittle asked us, as the Government, to take a swing against neurological conditions, and we have made it a priority within our programme for government to improve access to care and support for people with neurological conditions, to enable them to live well on their own terms.
Over the past 18 months, we have worked hard in collaboration with the neurological community to develop Scotland’s first national action plan on neurological conditions. As Kenneth Gibson said, we are reviewing the responses to our consultation on the action plan, which we intend to publish in its final form later this year. The draft plan sets out 17 commitments across integrated care and support services, which were informed by what people told us about their life experiences and priorities. The commitments very much echo the findings of the Parkinson’s UK report, which reassures us that we are focusing on the right areas to make the difference that people want and which Scotland needs.
Our five-year plan aims to build a sustainable neurological workforce, to improve the co-ordination of services and support and to realise equitable and timely access, in order to ensure that people experience high standards of person-centred care, at the right time. I will touch on those points in turn.
A number of members raised workforce planning, and Kenneth Gibson has written to me numerous times about that important matter, which is a key focus of the action plan. We expect people with neurological conditions such as Parkinson’s to have access to a range of care and support professionals to ensure appropriate management of their condition. That includes specialist nurses; Miles Briggs, Kenneth Gibson and just about everybody who spoke mentioned their fantastic work and how important they are. Since 2015, we have invested £2.4 million in enhancing specialist nursing services. We will explore delivery and workforce models to learn from what is working well.
Our aim is to innovate and enhance existing services, to ensure that people can access the specialist services that they need. We will build on the progress that we have achieved over the past decade—when, for example, the number of consultants with a neurology specialty has increased by more than 50 per cent—to ensure that we have the correct support. We have introduced the real living wage for adult social care support workers. Free personal care is also now available to everyone who is assessed as requiring it, no matter what their age is. Given the time, I will move forward in my notes.
As the motion rightly acknowledges, family and friends play an important role in supporting those with Parkinson’s. Without the dedication of unpaid carers, the system would struggle to cope. That is one reason why we introduced the Carers (Scotland) Act 2016, which came into effect last April. The act puts in place a system of carers’ rights that is designed to listen to carers, improve consistency of support and prevent problems. It will help to sustain caring relationships and protect carers’ health and wellbeing. I apologise that I have not managed to cover all the commitments in the national action plan, but they should embed the 2016 act.
The aim is to reduce the waiting times that people are experiencing. Under the waiting times improvement plan, we recently announced additional investment of £70 million to target long waits, and neurology is one of the specialties that has benefited.
Presiding Officer, I see that I am well over time. The debate has been important, and a lot of good work is going on. I assure members across the chamber that we work regularly with Parkinson’s UK in Scotland as one of our key partners for consultation when we make decisions about not just Parkinson’s but neurological conditions in general. As Brian Whittle said, although such conditions are very different, they have a lot of similarities in their requirements and in the support that we need to give.
I thank Miles Briggs for bringing the debate to the chamber and I thank everyone for their contributions.Meeting closed at 17:38.