Scottish Dementia Working Group members have their say on Scotland’s National Care Service


During 2022, members of the Scottish Dementia Working Group (SDWG) had their say on the Scottish Government’s proposals for a National Care Service for Scotland. You can read more about this in the Active Voice Annual Report 2022. This year, the members continue to engage with the National Care Service proposals as they proceed through the Scottish Parliament. The SDWG is keen to ensure people with personal experience continue to have their say, share their views, and take the opportunity to play a part in creating something that will hopefully change things for the better for people with dementia. As such, the group was pleased to be able to participate in a recent National Care Service “Making Sure My Voice Is Heard” session in Strathpeffer in the Highlands, attended by SDWG member Margaret Northedge (pictured, right) and her husband Barry Northedge (pictured, left), who is a member of the European Dementia Carers Working Group (EDCWG).

The session, organised by the Scottish Government, explored issues around accessing social care support, eligibility for and being assessed for social care support. This was one of several co-design sessions taking place over the summer, and given the location of this session it had a particular focus on issues faced by people in rural and remote locations. Margaret and Barry live in a beautiful Highland village, so they are well acquainted with the issues faced by people living in these areas of Scotland. The couple spoke about their own experiences and they, along with the Alzheimer Scotland Active Voice team members in attendance, highlighted what’s important to people living with dementia, their families and carers in relation to accessing social care support. The session explored what does and doesn’t work currently and discussed issues such as the importance of community link workers, and the possibility of ensuring people had a single point of contact to make it easier to access social care support.

The session considered the importance of providing support before a crisis point is reached; it looked at how best to deliver positive outcomes, involving family and friends and a "whole community" approach; as well as discussing the need to ensure self-directed support allows for greater flexibility, particularly in remote and rural areas where options for support may be limited. The Scottish Government is still working towards 2026 for the introduction of the new National Care Service, and further co-design activities will take place over the next 18 months. The SDWG will continue to ensure the voice of those with personal experience is fed into the new National Care Service co-design process. Barry Northedge commented: "Margaret and I were extremely pleased to be encouraged by Wendy Rankin-Smith and Chris Kelly, Active Voice Team members of Alzheimer Scotland, to participate in the National Care Service consultations. We live in a very rural part of Scotland and the challenges that we face are distinctly different from some of our urban colleagues and for that very reason it is vitally important that we are given the chance to be heard in national consultations. Whatever structure is put in place for a National Care Service, it has to meet the needs of all parts of the country and all parts of society. There has to be an expectation of equality of service wherever you live and whoever you are and that can only be achieved if those minority and ‘rural voices’ are heard. The Active Voice Team supports and encourages people with lived experience, such as Margaret and I, to become involved, to be heard and to campaign for the services that we all deserve. We have opinions based on personal experience and those opinions matter!"

Pictured: Barry and Margaret Northedge, with Wendy Rankin-Smith (centre)