Hansard

I very much welcome the opportunity to host this members’ business debate on the 10th anniversary of the charter of rights for people with dementia and their carers in Scotland.

I will update members on what has happened. We had 40 members of a dementia choir here, who were going to sing, but unfortunately they could not wait for such a long time and have had to leave. I apologise to them and to members.

I see a number of people coming into the gallery now, including Irene Oldfather and Mary Scanlon, which is fantastic. I can now say the bit of my speech in which I acknowledge the people in the gallery who have championed the charter. I also thank members from across Parliament who have signed the motion and supported the debate. I think that Professor Miller and some other people have been here for quite a while, so I thank them very much for their patience in bearing with us. I am sure that Irene Oldfather, Mary Scanlon and others who have been elected members understand that Parliament can be unpredictable. I thank them all for staying on.

The Health and Social Care Alliance Scotland, Alzheimer Scotland and the University of the West of Scotland mark October 2019 as the 10th anniversary of the signing of the charter of rights for people with dementia. There is an event later tonight in the Scottish Parliament, and it will be a great honour for me to speak then, too.

The charter of rights was an initiative of the cross-party group on Alzheimer’s and dementia, which was set up and convened by Irene Oldfather when she was a member of the Scottish Parliament. She had had experience of dementia in her family, and the charter was a response to the fact that, at the time, people with dementia and their rights seemed to be invisible. I thank Irene and others for taking up the issue and for championing people with dementia with such dedication and commitment.

In 2009, it was recognised that people who are living with dementia are entitled to enjoy the same human rights as everyone else. Nevertheless, at that time, people with dementia were still being denied their rights because of social and cultural barriers, including lack of understanding in the population about dementia, and lack of staff training on how to respect and protect the human rights of people who are living with dementia.

The charter adopted the United Nations-endorsed PANEL principles: participation, accountability, non-discrimination and equality, empowerment and legality. The approach focuses on people’s right to participate in decisions that affect their human rights; accountability of the people who are responsible for respecting, protecting and fulfilling those rights; non-discrimination and equality; empowering people to know their rights and how to claim them; and legality in all decisions, through an explicit link with human rights legal standards in all processes and outcomes. The aim is to uphold the human rights of people living with dementia in the community and in care facilities.

The charter and its rights-based approach have been fundamental in shaping the development of dementia policy and practice since its publication in 2009. The approach has driven commitments to provide high quality post-diagnostic support, to enhance education and training for health and social care professionals, and to improve care in acute hospitals, all of which are important.

The charter has brought to the fore the voices of people who have lived experience of dementia, or of caring for people with dementia, through the Scottish dementia working group and the national dementia carers action network. All national strategies have been developed in partnership with people with dementia, their carers and a range of organisations and professionals in health and social care.

It is estimated that 90,000 people in Scotland are living with dementia. With our increasing population of older people, that number will continue to grow. Dementia is a difficult condition for the people who live with it and for their families and carers.

I draw members’ attention to the Health and Social Care Alliance’s dementia carer voices project lead, Tommy Whitelaw, who is also in the gallery. Tommy has been at the forefront of awareness-raising campaigns in Scotland. His mother was diagnosed with vascular dementia and he cared for her for five years until, sadly, she passed away, in 2012. Tommy has continued to use his history to raise much-needed awareness of the charter. The dementia carer voices project has reached more than 170,000 national health service staff, care home staff and students, has secured more than 24,000 pledges from people, and has visited more than 900 locations—I think everyone in Scotland has met Tommy and heard his story. I congratulate him and thank him very much. [Applause.]

There is no doubt that Scotland has made much progress since 2009. As a result of the charter of rights, we have in place some of the most progressive dementia policies in the world. We should be proud of that. Since the charter was established, improving dementia care has been a priority of the Government, and it remains a priority.

Progress has been forged through hard work. Effective contributions at every level from practitioners and policy makers have been pivotal in moving us on. The Scottish Government should be recognised for working constructively to make progress: it has introduced three dementia strategies, with a fourth to come.

There has been great progress since a motion on dementia was debated in 2009, but there is always more to be done. For example, I thank the Evening Times and The Herald for their campaign to highlight the need for free healthcare for people who have advanced dementia. It is a very real issue that affects people who are very vulnerable. Whether the condition is assessed as being a matter for social care or healthcare is a huge question that the Government is considering at the moment. We know that care can be very expensive—it can be out of the reach of many people and their families. I ask the minister to address the issue when he sums up the debate, and to consider the issue with the Cabinet Secretary for Health and Sport.