The Mental Welfare Commission report Dignity and Respect (June 2014) was a wake-up call for many citizens. The report identified, among other things, that vulnerable people in continuing care had in some cases limited access to outdoor space and on occasion the main source of lighting was strip lighting with no window access. Problems with nutrition and hydration and lack of connectivity to the community in which care was given were also highlighted as areas requiring improvement.
The idea that seven years after a similar report had been published, change was stubbornly absent, was disappointing to say the least. Of course there were also good practice examples cited which in a way begs the question, if some can – why can’t all?
It is interesting that despite professional assessment of areas where the system was clearly falling short, carers and families were generally satisfied with standards of care. Why is that? Why is the voice of some of the most vulnerable in our society so passive? How can we initiate not just regulatory frameworks but culture change to raise aspirations, engage and empower?
Since the publication of the report, government response has been swift and decisive and it is clear that there is a determination to act with a plan well in progress to address improvement. More generally a call by the Cabinet secretary for health and wellbeing for a clearer, stronger voice, not just for people who use services but for the general public, to become more involved in discussion and innovation around the vision for future health and wellbeing offers the potential to be a catalyst for change.
Raising aspirations around people having a voice and importantly creating a space for hearing the voice, thereby demonstrating the principle of not just words but meaningful influence and purpose is a necessary first step to reform. National events are being held across the country to promote engagement by citizens in a stronger voice.
This drive for change captures the mood music of the work that organisations like the Health and Social Care Alliance Scotland (the ALLIANCE) have been promoting over a number of years – empowering people who are disabled, living with long-term conditions and their carers through core principles of self-management, ensuring a human rights-based approaches to health and wellbeing and designing services with people, not for them, all contribute to the ethos of the citizen voice.
The new care opinion pilot, a partnership between the ALLIANCE and Patient Opinion offers a voice to families and carers who use services and presents opportunity for constructive engagement and change between provider and family. It brings openness and transparency to the dialogue and does so in a modern way via the web and social media.
The Dementia Carer Voices project is changing hearts and minds by offering health and social care professionals the opportunity to reflect on the lived experience of those who care for someone with dementia and in doing so, to make a pledge to make a difference. Over 2,500 pledges have been received this year to date with nurses saying it has reconnected them to their core values and reminded them why they went into nursing.
There is no more powerful a story than the lived experience of real people. The ALLIANCE Involvement Network is testament to this, and harnesses a group of people with lived experience of health and social care services to get involved in a range of activities to tell their story in their words and on their terms.
Ensuring equality, giving a stronger voice to citizens, means also shining a light on our most vulnerable hard to reach groups wherever that may be.
A quote from the Stirling Dementia Services calendar says: “A friend knows the song in my heart and sings it back to me when my memory fails”.
As citizens, let us be that friend, that strong voice and let us speak up and speak out. Our services will be all the better for hearing first hand from those who know how to drive forward improvement and change.
• Irene Oldfather is programme director at the Health and Social Care Alliance Scotland www.alliance-scotland.org.uk