The next item of business is a members’ business debate on motion S4M-13894, in the name of Joan McAlpine, on volunteering and self-management. The debate will be concluded without any question being put.
Motion debated,
That the Parliament acknowledges the contribution of volunteers across Scotland in raising awareness of self-management; believes that both volunteering and community involvement play a significant role in supporting people with managing long-term conditions and in raising awareness of how self-management can inspire others; understands that third sector organisations, such as New Horizons Borders in the Scottish Borders and Healthy ‘n’ Happy in South Lanarkshire, support many formal and informal volunteering opportunities for people with long-term conditions and that this has resulted in social benefits, including social connectedness and improved employment prospects; welcomes the continued investment through the £2 million per year Self Management Impact Fund, which is run by the Health and Social Care Alliance Scotland (the Alliance), and congratulates the Alliance on establishing its Self-management Network for Scotland, which aims to help people with long-term conditions or who work in health and social care to share their experiences, learn and hear about best practice and to change lives through self-management.
12:35
I am very pleased to bring this important debate to the chamber. Before I begin, I put on record my gratitude to the Health and Social Care Alliance Scotland for the help that it has given me in preparing for today’s debate. In particular I thank Andrew, Sara, Christopher and Emma, who I believe is in the public gallery this afternoon.
Volunteering brings immeasurable benefits to the volunteers themselves; to the individuals whom they support; and to organisations and communities. However, although it is easy enough to understand what volunteering is, some people are unfamiliar with the term “self-management”. It is the name that is given to a set of person-centred approaches that aim to enable people who are living with long-term conditions—and their unpaid carers—to take control of and manage their own health.
It essentially puts people in the driving seat of their care, and it works for a whole range of conditions. The examples that I will use in my speech today concern mental health; however, members will have seen the briefing from Diabetes Scotland, which emphasises strikingly how equipping patients with quality knowledge of their condition and how to self-manage it can prevent problems from escalating, prevent further disability and even save lives.
The Scottish Government’s strategy for self-management for those with long-term conditions and those with a caring role is set out in the “Gaun Yersel!” document. The strategy was launched in 2008 alongside the alliance, which remains a key strategic partner in its delivery.
The strategy recognises that everyone has strengths, resources, skills and experience that support their health and wellbeing. It is based on five key principles. Those are:
“Be accountable to me and value my experience ... I am a whole person and this is for my whole life ... Self management is not a replacement for services. Gaun yersel doesn’t mean going it alone ... Clear information helps me make decisions that are right for me”
and
“I am the leading partner in management of my health”.
Self-management is a critical part of the Scottish Government’s 2020 vision for a safe, effective and person-centred health service. Much of the financial investment in self-management activity has been undertaken through the Scottish Government’s self-management fund, which ran between 2009 and 2012, and latterly the self-management impact fund, which is managed by the alliance. In the past three years, the fund has provided small grants, totalling nearly £6 million, to third sector groups to encourage the sharing of good practice and the development of new approaches to self-management.
The fund has reached almost 21,500 people and created 107 jobs and 622 volunteering roles. There are excellent examples from all over the country, including Edinburgh’s network of neighbourhood time banks; Diabetes Scotland’s Chinikum at Home project; and Aberdeen Foyer’s work with adults with mental health conditions. Sadly there is not enough time for me to mention them all, but I will highlight a couple of examples.
Mo Connelly is a volunteer with Support in Mind Scotland in Dumfries. She was nominated in the inspirational person of the year category at this year’s self-management awards. Mo has a diagnosis of borderline personality disorder, and with the help of Support in Mind she learned about her condition and about techniques for managing her symptoms.
Once Mo was in recovery, she felt that it was important that others with a similar diagnosis should benefit from the support that she had received. With the help of Support in Mind, she began raising awareness of the condition, helping others to find sources of support and how to use self-management techniques, including by briefing health professionals and social workers on dealing with the condition.
Mo says that that volunteering is an important part of her own recovery. She has registered as a member of the alliance so that she can contribute her experience to benefit others with a borderline personality disorder diagnosis. She is also developing a peer support group and training with the wellness and recovery college in Dumfries.
Mo’s story shows that reciprocity is an important aspect of self-management. People who have been supported by volunteers or peer workers are often inspired to volunteer themselves. I will mention the New Horizons Borders peer support project titled through the rain. It employed four peer workers with lived experience of mental health problems. People who received support from the project said that they found the service to be non-judgmental, meaningful, empowering and a key impetus in their recovery. A powerful comment that sums up why the peer support workers were so effective is:
“you can learn to be a nurse or support worker but you can’t learn how it feels to live with a long term mental health condition.”
Self-management has some truly positive impacts. However, as I mentioned, there is sometimes a lack of understanding of what it means. That can be true among health and social care professionals—not all of them, but a few—as much as among the wider public. The great shame of that is that effective self-management can keep people well and ease pressure on national health service acute services, for example by reducing unnecessary admissions. A modest investment in self-management and its volunteers can save considerable sums of money in other areas of care.
We need to keep investing in and promoting the self-management fund. We must also invest in peer support roles, both voluntary and paid, bearing in mind the fact that mentors have their own health to manage. The alliance’s self-management network will help with that, but we all have a role to play.
12:41
I thank Joan McAlpine for securing this important debate. I also give my apologies because I will probably have to leave just before 1 o’clock because I have the Conveners Group meeting.
Members’ business can often be seen as being less important than Government or Opposition debates, but debates such as this can play a very important role in shining a light on issues that matter deeply to a great many people. There can be no doubt that self-management and putting people who live with long-term conditions in the driving seat of their own condition are of significant importance to many people.
People with long-term conditions need support that is tailored to meet their specific needs and circumstances at a given time, but it is vital that when that support is packaged and delivered, the person with the condition is given the maximum control possible. Such an approach is about two simple but important words: dignity and respect. In short, it is about enabling people to live their lives on their terms.
In my constituency, I recently met Shona Sinclair from a fantastic initiative called the Work4ME—work for ME or work for me, depending on what we want to call it—Co-operative. It was established in 2012, and Shona is the co-founder. She set up Work4ME after research was commissioned into the experience of people living with ME or chronic fatigue syndrome and the challenges that they face in employment and in managing their condition.
I have deep interest in the way that people with ME receive treatment and support. I have two friends who have ME and, with a former MSP who is also a friend, Andy Kerr, I was the co-convener of the cross-party group on ME.
For many people who live with ME or chronic fatigue syndrome, self-management in the workplace can, not surprisingly, be a huge challenge. During my time as an equal opportunities officer in the then Scottish Office—which, admittedly, is some time ago—the organisation, although progressive in its approach, did not always get it right when dealing with people with illnesses such as ME or chronic fatigue syndrome.
Interestingly, SKS Scotland—a company of which Shona Sinclair is also director—has done work on how the self-employment model could provide improved outcomes for people living with ME or chronic fatigue syndrome and, indeed, people with other long-term health conditions. The challenges of self-employment can be significant, so Work4ME was brought into being with the specific purpose of helping and enabling people and organisations to meet those challenges.
Work4ME offers advice and assistance for those suffering with ME or chronic fatigue syndrome who are entering or returning to the business environment. That could include support with training, project managing, research and development, or marketing and public relations. Work4ME helps to answer any questions and provides encouragement and a bit of help when it is needed, as well as a bit of moral support from mentors who understand the specific problems of returning to work. That allows the individual who is suffering from a long-term illness to generate personal income and to see the socioeconomic and wellbeing benefits that that provides.
As an example, Shona Sinclair herself, who runs Work4ME, went from having a very active life, which included running marathons, to a life of fatigue, spending up to 20 hours a day in bed. Using her own life experiences, Shona has helped others to find the best way to cope with the work-life balance.
Living with a long term-condition impacts on all aspects of an individual’s and their family’s life. Organisations such as Work4ME and those that Joan McAlpine mentioned—and I am sure that we will hear of more from other members—can help to create a positive network for those who wish to work but who need a bit of support. I am glad that the Scottish Government has committed £2 million annually to the self-management fund to help such organisations.
With self-management, when people are trying to manage their own situation, they need people like Shona Sinclair and her colleagues in other organisations across Scotland who can provide the right support at the right time to enable individuals to choose how they want to live with their long-term condition.
Once again, I congratulate Joan McAlpine on bringing this important debate to the chamber.
12:46
I also congratulate Joan McAlpine on securing today’s debate.
The availability of modern technology, and with it the ability to share information and advice, means that people are more and more looking towards self-management of their conditions. That is especially the case for people with long-term conditions, to whom self-management gives the freedom to plan their healthcare around their family lives.
We have had a number of briefings ahead of today’s debate; Joan McAlpine mentioned the Health and Social Care Alliance Scotland’s contribution. Diabetes Scotland represents one of the largest and most recognised groups that benefit from self-management, through blood testing kits and the like. Diabetes Scotland allows people to live with diabetes and to understand their condition, and it helps them to attain stable blood sugar levels that help them to avoid some of the devastating consequences of their disease. It also provides education and support, helping people manage their own care.
Crucial to self-management, as others have mentioned, is the role of volunteers who can use their own experience to support others to self-manage. Volunteers have been involved in a number of projects using their own expertise, but it is important that that is not seen as healthcare on the cheap. It must be about enhancing patient care and the patient experience and being patient centred and led. The best volunteers are those who have had the same condition and can share that lived experience with patients and professionals alike.
Self-management empowers, giving people the tools to look after their own health, but there are barriers. Sadly, those barriers sometimes come from clinicians who are very cautious and who maybe do not trust patients to look after their own health. There are also barriers with regard to health inequalities and rurality, which can limit access to services and support. We must overcome those barriers to ensure that people can access self-management, because it has a huge ability to deal with some of the health inequalities that we see in our society.
Another organisation that sent us a briefing is Sue Ryder, which has devised multiple sclerosis self-management support based on five Rs. It is a free 10-week course that is currently available in Aberdeen but which we hope will be rolled out elsewhere. The five Rs are relax, rebuild, re-energise, reintegrate and regenerate, and the responses to that programme have been moving. One person said:
“It was brilliant and so inspiring how people manage their lives. I found the course very beneficial in that I didn’t feel disabled and can still do lots of things with assistance.”
Another person was even more poignant:
“I feel in a better frame of mind then I did 10 weeks ago. I have found myself trying to draw which I haven’t tried in years! I think I will follow up some of the therapies ... I saw my GP last week. She couldn’t believe how much better I seemed. I am now coming off my antidepressants. I have been on them for 4 years.”
Those comments show the power that self-management can have on people’s wellbeing.
However, I want to bring to the minister’s attention an example of where we are still toiling to roll out self-management: patients on Warfarin. The Public Petitions Committee has been dealing with a petition on that subject. What leaves me amazed is the reluctance to have self-testing among adults when it is commonplace in paediatric cases. I have heard from young people who self-managed through their youth but who then had that equipment and freedom removed when they transferred to adult services. The issue is not only the removal of a freedom but the impact on their health, because the delay in getting test results means that they do not get the appropriate levels of Warfarin straight away, which is what they were used to. There is also the inconvenience of their having to attend regular clinics and general practitioner appointments, as well as the knock-on effect for the NHS.
The Public Petitions Committee wrote to health boards and found that, out of the 12 health boards that responded, only 209 people were confirmed to be self-monitoring in Scotland out of an estimated 55,498 Warfarin patients, which is around 0.37 per cent. That is a disgrace. I hope that the minister will use the debate as a catalyst to change that appalling statistic and make sure that people, whatever their condition, can benefit from self-management.
12:51
I, too, thank Joan McAlpine for securing a debate on this important subject. I am delighted to participate in a debate about self-management and to discuss the role that it can play in people’s lives. As has been indicated, this is about people with long-term conditions being in charge of their own future on their own terms, with access to the right information. As Joan McAlpine and Rhoda Grant said, the conditions are wide ranging and diverse.
Different people will react in different ways to the knowledge or, indeed, the discovery that they are suffering from a long-term condition. There will be a mixture of emotions—uncertainty, anxiety, fear—and a general sense of knowing neither what lies ahead nor how to cope. In that situation, I think that having information, feeling that you are not alone and knowing that there is partnership support but also knowing that you can direct matters and, as Joan McAlpine said, be in the driving seat is vital. It was right to stress that self-management does not mean having to cope alone and without support; rather, it means that people are better informed about their conditions, well prepared for everyday challenges, and better supported when they ask for it. Being in partnership with health professionals and others who provide support means that self-management can help people to make decisions that are right for them—decisions with which they feel at ease.
Bruce Crawford talked about dignity and respect. People say that self-management is important to them because they are seen as an individual and as a person with strengths, resources, skills and experience. They are then supported to develop their skills, to create and cultivate social networks and to develop their confidence to cope with their long-term condition. They are also provided with the right information in a format that they can understand. All those benefits are hugely valuable.
Volunteering and community involvement are immensely important in supporting and helping people who are managing long-term conditions and in helping others to understand how self-management can help them. A bit of education is necessary here, as progress is still to be made in broadening awareness of what the benefits can be. Knowledge transfer and the exchange of ideas and experience are a vital component of making all this work even better. Of course, the Health and Social Care Alliance Scotland is extremely important in supporting self-management in a variety of ways, some of which have been referred to.
I want to talk briefly about the self-management impact fund, which was created in 2013. It has certainly benefited recipients in my area, including Voluntary Action East Renfrewshire, Carers Link East Dunbartonshire, Carers of West Dunbartonshire, Inverclyde Community Development Trust and West Dunbartonshire Community and Volunteering Services. I praise all those organisations for the excellent work that they do. The Health and Social Care Alliance Scotland’s development of the self-management partnership and the practice programme is supporting the development of self-management throughout Scotland.
I congratulate all those who are involved in the initiatives because, quite simply, they are transforming the lives of those who are benefiting from self-management and deriving from it hope and optimism that they might not otherwise have.
12:55
I join other members in thanking Joan McAlpine for bringing the debate to the chamber, and I thank colleagues for highlighting the exceptional work that is under way across Scotland to draw on and maximise the assets that our people bring to their health and care. Although the debate has been short, it is very important, as Bruce Crawford said.
We know that good progress has been achieved under the “Gaun Yersel!” strategy that Joan McAlpine mentioned, which is effectively supported by the Scottish Government’s continued commitment of £2 million per year to the self-management fund. Members might like to know that that fund recently launched its call for applications for the fresh round of funding, which is entitled “Transforming Self Management in Scotland”.
In addition, around 1.3 million people volunteer each year, and we recognise the enormous contribution that those volunteers make to the lives of individuals and communities across Scotland. Volunteering gives people the opportunity to bridge the gap between formal and informal learning by realising their own individual interests and talents. That is why the Scottish Government is providing funding of more than £10 million in this financial year to local and national third sector organisations across Scotland to offer support to individuals and organisations on volunteering opportunities. The resourcefulness, commitment and innovation of individuals, families, communities and third and voluntary sector organisations across Scotland is truly inspirational not only in providing opportunities for volunteering, but—as Joan McAlpine set out and Bruce Crawford and Annabel Goldie reiterated—in enabling and supporting people to be in the driving seat when it comes to their care. I very much echo and agree with that point.
I turn to some of the specific projects that are mentioned in the motion. New Horizons Borders is an organisation that I am well aware of through my previous work on the Finance Committee and the Welfare Reform Committee, of which Joan McAlpine is now a member. I visited the organisation, which is doing great work in supporting better mental wellbeing among those people with whom it works. It has been awarded £131,000 from the self-management impact fund to train peer support workers to develop and deliver a self-management course.
Healthy n Happy is another organisation that I have been very happy to visit on more than one occasion. Most recently, I did so to open its great new facility in Rutherglen. It has a tremendous ambition to make Rutherglen and Cambuslang the healthiest and happiest places in Scotland, and given the determination of its staff, it might well achieve that aim. It has been awarded £108,000 from the self-management impact fund to build on its previous self-management project by providing opportunities for peer support and learning support for people with a long-term condition and their families and carers. That project has raised awareness of self-management in Cambuslang and Rutherglen.
Rhoda Grant mentioned Sue Ryder and the five Rs course. She might like to know that my colleague Maureen Watt, the Minister for Public Health, recently visited that organisation to see that project in action. We know that it is providing information and support to adults with multiple sclerosis. Rhoda Grant rightly highlighted the great feedback from those who are benefiting from that project.
Bruce Crawford talked about self-management and returning to work. He gave an example from his local area, but we know that there are others out there. For example, the INSPIRE—intensive care syndrome: promoting independence and return to employment—self-management programme at Glasgow royal infirmary is a five-week programme that aims to empower patients who are recovering from a critical illness to take control of their health and wellbeing, which can help people get back to work.
There are many other examples out there, including the hope cafe in Lanarkshire, which is a peer-led mental health and wellbeing project in rural Clydesdale. It facilitates various activities that promote and support positive mental health and wellbeing and encourage self-management.
Macmillan @ Glasgow libraries is a strategic partnership between Macmillan Cancer Support and Glasgow Life, specifically Glasgow libraries. It has created a network of cancer information and support services across the city that allows individuals who are affected by cancer to access the right support at the right time in their local community.
Other initiatives include the partnership between NHS Lanarkshire and Chest Heart & Stroke Scotland, which makes a difference to people who are affected by stroke by supporting self-management, and link and learn, which is an initiative that Joan McAlpine will be interested in, given her interest in carers. Carers Link East Dunbartonshire provides information events and health and wellbeing courses for carers, but it knows that not enough carers access them, so it came up with the link and learn initiative to increase participation among harder-to-reach carers. The project’s unique aspect is that carers are also given one-to-one computer training in their homes by trained volunteers to enable them to access the learning courses that are available.
Those are just some examples of the supportive projects that are out there. We have to find ways of getting those sources of support absolutely integrated and woven into the fabric of our health and social care system, and the person-centred integration of health and social care represents an excellent mechanism by which we can achieve that and make it a reality.
We need to support people to have different types of conversations and forge equal partnerships with their practitioners through collaborative care and support planning, helping them to describe their own preferences, agenda and goals and helping to plan and co-ordinate care and support. Much of that involves practitioners communicating in clear and meaningful ways and speaking to people in language that they understand.
There are opportunities to redesign health and care to make it simpler, more engaging and more responsive to people’s capabilities and health literacy needs. On that point, Rhoda Grant mentioned the petition that is before the Parliament about self-management for warfarin patients. The petitioner contacted us all, I believe, and the Scottish Government will look closely to see how the Public Petitions Committee takes the petition forward. However, Rhoda Grant and other members might like to know that Healthcare Improvement Scotland is about to publish updated guidance that is broadly supportive of the aims of the petition. We need to look at how to take this forward with existing services, but I think that it is helpful to put on the record that some work is under way. We will, of course, look to respond wherever the committee takes the petition.
It is hugely important to rise to the challenge of supporting and enabling people to be in the driving seat of their care, as it has been put. This debate has provided an excellent opportunity to acknowledge the vital role that is played by volunteers, the impact that we are already seeing for those who are effectively enabled to be the lead partner in their care and the successes of third sector co-ordination organisations such as the Health and Social Care Alliance Scotland in changing lives across Scotland through supported self-management.
The debate has been a useful opportunity to put on the record our collective thanks—and I express my thanks—to all those who are involved in that work. I thank Joan McAlpine once again for bringing the debate to the chamber.
Thank you all for taking part in this important debate.
13:03 Meeting suspended.Previous
First Minister’s Question Time