Alzheimer Scotland is the leading dementia organisation in Scotland.

Alzheimer Scotland Post-Diagnostic Support Campaign

Monday 4 December 2017

In June 2017, the Scottish Government published Scotland’s third National Dementia Strategy 2017-2020, containing 21 ‘commitments’ to improve the lives of people with dementia, their families and carers – many of which reflect what Alzheimer Scotland has campaigned for over many years.

A key commitment in the strategy is the continued guarantee that everyone who gets a diagnosis of dementia should receive Post Diagnostic Support  for at least one year.

People with dementia and their carers tell us time and again how important it is to have high-quality Post-Diagnostic Support from a named Link Worker. Having the opportunity to speak to someone about their diagnosis and what it means, to plan for future care and decision-making and to find out about how to live well day-to-day in their community, are crucial to people after receiving a life-changing diagnosis.

Despite this vital support being an official Scottish Government target since 2013,  we know that provision of this vital support is still not secure; that the Scottish Government’s own figures tell us that too many people receiving a dementia diagnosis are still not being offered Post-Diagnostic Support and that there are waiting lists in many areas which undermine how effective this support can be.   

On top of this, the PDS Link Workers who deliver this are in many places commissioned on short-term contracts; this creates uncertainty for them, for the service and, most importantly, for the person with dementia and the families who need support.

What are we doing?

Alzheimer Scotland is continuing to campaign on this issue and work with people with dementia, their families, carers and our members to ensure their voices are heard nationally and locally throughout Scotland.

Following the publication of the new strategy, Alzheimer Scotland has held engagement events across Scotland to discuss the experiences, and priorities that matter most to people with dementia and their carers. At every session held so far, Post Diagnostic Support has been a focus of discussion.  Where post diagnostic support has been delivered well, people are vocal about its value and impact.   However, in many more areas people recount difficulties accessing this support, and in many areas, failure to provide anything other than a cursory check-up rather than the pro-active relationship based approach described in the Scottish Government target. 

The gap between policy and practice remains too wide.

The 32 Integrated Joint Boards (the body responsible for the commissioning and delivery of adult health and social care services, including Post Diagnostic Support) are beginning to plan their budgets for the year ahead. Alzheimer Scotland is writing to the elected councillors who sit and vote on these boards, as well as well as every councillor who signed our pledge as part of our 2017 election campaign, asking them to make sure that PDS services are able to meet the needs of people with dementia and carers in their area and are sustainably funded for the long term.

As part of this, we are sending councillors this video of people with dementia and carers, as well as professionals, describing the importance of Post-Diagnostic Support and the impact of the support they received.

The film explains how this early intervention transforms lives and how it can help to avoid and delay unnecessary admission to residential care, hospital and other forms of expensive crisis-driven health and social care services.

Following on from the strategy engagement events, Alzheimer Scotland will be inviting elected representatives and officials from the Integrated Joint Board to meet with people with dementia, their families and carers, to explain what they will do to ensure that crucial supports and services are available within their area.

There’s still time to get involved and have your say on the issue of post diagnostic support and other matters that impact you. If you’d like to find out more about getting involved in our ongoing local campaigning, please email: publicpolicy@alzscot.org

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