Meeting of the Parliament 09 October 2019
I thank the members who remained behind to make their speeches, and particularly Christine Grahame for that moving contribution. I congratulate Sandra White on lodging the motion and on her commitment to the agenda over the past 10 years. As others have done, I acknowledge the patience that those in the public gallery showed in waiting for the debate to take place.
Members have made a number of important points. To pick up on Tom Arthur’s point about the Carer Positive initiative, I encourage members to follow his advice on that. I have certainly done what he suggests. I also encourage members to consider a dementia awareness course for them and their staff, which is something else that I did last year. It was certainly eye-opening and helpful for the way in which my office deals with the case load that comes to us relating to dementia. Let us be honest—it is an increasing case load.
More recently, as veterans minister, I visited the Erskine care home in Edinburgh, which is an absolutely wonderful facility that has a particular focus on dementia. In the course of that visit, I was asked to try on the dementia suit. The officials were a bit concerned about the minister doing that, as officials tend to be, but I wanted to try it to see what it was like. That was even more eye-opening. The sheer physical and mental effort to concentrate for a few moments simply to pour a cup of tea or take the top off a jelly carton was exhausting. That really brought home the debilitating nature of dementia and the strain that it must place on people suffering from it, particularly when they are older.
To return to the broad themes of the debate, the development and signing of the charter represent a great coming together of all the parties in the chamber—it has been a cross-party and external stakeholder effort—in recognition of the importance of the agenda and of not only improving care but ensuring the wider social inclusion and civic participation of people with dementia and, we must stress, their carers. In the past 10 years, we have been privileged to benefit from the experience, passion and expertise of people with lived experience of dementia—those with the illness and those who look after them. The Scottish dementia working group is a long-established organisation that has sought tirelessly to bring the experiences of its members, all of whom have dementia, to the development of national policy to effect changes in the design and delivery of services and support. However far we have come, we owe a lot to that contribution.
The national dementia carers action network and the dementia carer voices project have brought the experiences of carers to the forefront. In more recent years, they have been joined by the TIDE—together in dementia everyday—carers network and DEEP, the dementia engagement and empowerment project. I thank all those groups for their dedication and for giving their time to improve the lives of people with dementia. Without them, we could not develop truly meaningful action on dementia. Although we still have some way to go, there is no doubt that we have made progress.
A wide and growing range of organisations have been influential in supporting and challenging Government and the health boards, and now the integration joint boards, to make improvements in dementia care in accordance with the charter. The list includes Alzheimer Scotland, the Health and Social Care Alliance Scotland, the University of the West of Scotland and a range of academic research, charity and statutory bodies. I also highlight those organisations that are at the forefront of delivering innovation in dementia support, including the award-winning Kirrie Connections in my constituency, which really delivers on the ethos of living well with dementia.
In developing Scotland’s first national dementia strategy, we engaged with stakeholders on the human rights principles that are, as they should be, at the core of the charter. That strategy was produced in 2010, and the following year, when we produced the first “Standards of Care for Dementia in Scotland”, the charter rights were again crucial in underpinning all the key standards in that document.
The dementia standards still apply. They set out the entitlements for individuals, including the right to a diagnosis; the right to be treated with dignity and respect; the right to access all possible support services that are available; and the right to retain as independent a life as possible as part of the wider community. Kirrie Connections does good work in that respect—as do organisations like it—because it is at the heart of the community. People are not isolated because of their dementia—instead, they are part of the society of that town.
The standards also include the right of people with dementia to have carers who are well supported to carry out their caring role. The human rights principles that are set out in the dementia charter and in the dementia standards have informed all our policy initiatives, including the two national health and social care workforce programmes, our national dementia post-diagnostic service and our work on acute and specialist NHS dementia care. They have also helped to inform the inspection of services, such as the major Care Inspectorate report, “My life, my care home: The experiences of people living with dementia in care homes in Scotland”, and the work of institutions such as the Scottish Public Services Ombudsman.
Key to all those developments has been an embedding of principles that mean that people with dementia and their carers are central to, and active participants in, decisions that are made on care, treatment and support. That is how it should be. We recognise that dementia is, and will remain, one of our foremost challenges. It is well understood that more people are living longer, and that positive development means that more people will live long enough to develop Alzheimer’s disease.
Our big-ticket policies on dementia—the integration of health and social care, the Carers (Scotland) Act 2016 and now the social care reform programme—are designed to help to address that demographic shift. If we have not got it right all the time—which of course we have not—the intent and the drive are still there to make this happen.
We welcomed the Alzheimer Scotland report, “Delivering Fair Dementia Care For People With Advanced Dementia” earlier this year. To respond to Sandra White’s question, I say on behalf of the cabinet secretary that she is considering the report’s recommendations as part of the social care reform programme. We continue to work with all partners to support the implementation of “Scotland’s National Dementia Strategy 2017-2020”. That includes a commitment to improve referrals to enter dementia post-diagnostic support, as we recognise that the service has not yet reached enough people. We have also extended free personal care, which currently benefits more than 77,000 older and disabled people in Scotland, to those under 65.
The dementia charter of rights has also influenced the suite of carers’ rights that we have established under the 2016 act, including the right of each carer to have a personalised plan to identify what is important to them. As we all know, carers have the right to be listened to in assessing the needs of the cared-for person and in planning for when the person who is looked after comes home from hospital. We still have some way to go in delivering on that, but we are on the right track. Carers have the right to information about support, including through a carer information and advice service in every area. All those rights are summarised in the carers charter.
Earlier this year, we announced a review of mental health legislation in Scotland to improve the rights of, and the protections for, persons—including those with dementia—who may be subject to the existing provisions of mental health, incapacity or adult support and protection legislation, and to remove barriers to those who are caring for the health and welfare of those individuals. The review is focusing on how the views of people with lived experience can be part of the decision-making process.
Last year, we consulted on a number of changes to the Adults with Incapacity (Scotland) Act 2000, including changes to power of attorney and guardianship orders. We will incorporate ideas for the reform of the law on adult incapacity, including those that come from the review of learning disability and autism, into the findings of the mental health review in order to form an overarching review of mental health and incapacity law.
To build on all our partnership work on dementia, the programme for government says that we will consult on a fourth national dementia strategy next year. It is important that everyone with a locus in this area feeds into that process. As a Government, our commitment to this agenda is strong, as is the commitment of this Parliament, as we have heard tonight. That commitment is shared by every member in the chamber, as has been abundantly clear in this short and very late debate—again, I apologise for the lateness of the debate. I thank members for their contributions, and I thank those in the gallery for their contributions and for their presence here tonight.