In October 2009 a Members’ Business Motion in the Scottish Parliament called for a rights based approach to the care and support of people living with dementia, in the form of a Charter of Rights.
The charter was the result of roadshows held across Scotland organised by Alzheimer Scotland which asked people living with dementia about the challenges which they faced in managing their illness and trying to live independent lives in their own communities.
A working group led by a small team in the Scottish Human Rights Commissioner’s office compiled the charter based on the United Nations PANEL approach which promotes participation, accountability, non-discrimination, and empowerment. It was agreed to by all political parties and it seemed like a milestone, “a great leap forwards” that would forever ensure that people living with dementia would be treated with dignity and respect.
Some eight years later as the Scottish Parliament revisits a similar business motion on the work of the Health and Social Care Alliance Scotland (the ALLIANCE) Dementia Carer Voices programme we are entitled to ask, has sufficient progress been made?
In fairness, in the intervening period, much has been achieved. The Scottish Government has sought to narrow the gap between a highly developed national policy framework, through successive dementia strategies and the new health and social care delivery plan, and the practice of dementia support in communities.
A raft of initiatives such as Dementia Ambassadors, Champions and Nurse Consultants have been created to encourage change.
Over a number of years, the Dementia Carer Voices project has developed a social movement for change through the work of former carer Tommy Whitelaw, including a call to action to pledge to make a difference, reaching out to 80,000 people across the UK with in excess of 14,000 pledging to do one thing that will make a difference to the lives of people living with dementia and their families.
Supported self-management, embedded in the ALLIANCE core activities since 2008, enables shared and supported decision making and people to be equal partners in their care, has long become the language and principles that lead much of the Scottish Government’s work.
The idea of people not just at the heart of their own health and wellbeing, but being involved in the direction and design of policy and services is now an established way in which we do things. That ownership also encourages people with long-term conditions and life-limiting illnesses to take control and self manage rather than be passive recipients.
However, it would be disingenuous to pretend that everything is hunky-dory. There is a way to go with a system that is inconsistent in delivery and as the National Clinical Strategy recognises has huge variations and gaps. Meanwhile, there is a less than rosy picture of some services for older people.
An analysis of pledges made by nursing staff and students across the UK identified the main barriers to fulfilling a pledge to improve the care of people with dementia (where barriers were cited - many said nothing would stop them) as time, resource and staffing.
Given the demographics of ageing and dementia, we need to find ways to do things differently. The application of the landmark post-diagnostic support one-year guarantee was too rigid. It took too long to reassess the policy. It is really important with terminal illnesses and people who are by definition short of time that we are able to assemble the evidence quickly and listen to what people are telling us. There is nothing wrong with trying something and failing, the problem lies when we don’t recognise that we’ve got it wrong. Then we can’t move forward. As we await the publication of the third dementia strategy, we will hopefully see the promotion of a system that is needs based rather than time and task oriented. True person-centred care is about constructive conversations where we listen to people with lived experience within a rights based framework.
I genuinely believe that in Scotland there is a willingness to work across the political divide in the interests of making the lives of people living with dementia better. There remains much to do. We owe it to people with dementia across Scotland to work together to get on and do it.
Irene Oldfather is a director at the Health and Social Care alliance Scotland.