Debate about future of Social Care is Vital

Social work and social care are not valued enough and neither is there enough anger about the poor outcomes experienced by disabled people and unpaid carers says Lynn Williams, Unpaid Carer.

I was very privileged to have the opportunity to speak at the recent ALLIANCE event focussing on the recent Audit Scotland report “Social Work in Scotland”.  Read More “Debate about future of Social Care is Vital”

My Imaginary Illness

I feel like I’m in a dream. Everything seems to be in slow motion and I’m fighting to keep myself from passing out. Every touch makes me jump and almost lash out at the person who came near me. Sounds and lights seem louder, harsher and overwhelming. My legs struggle to move, like I’m walking through thick sludge. I’m existing, but just barely.

Despite having frequent episodes of these horrible, debilitating symptoms, sometimes lasting months, there are still people who question that I am actually ill at all. Neurotic and hypochondriac are the two favoured words, and have fast become my most hated vocabulary.

Read More “My Imaginary Illness”

People in Scotland at the forefront of change

“A social movement that only moves people is merely a revolt. A movement that changes both people and institutions is a revolution.”Martin Luther King Jr., Why We Can’t Wait

It seems extraordinary that it has been just 10 years since the birth of the ALLIANCE. A decade ago, the voice of the people who use health and social care services was muted. Now, people in Scotland are at the forefront of change. Read More “People in Scotland at the forefront of change”

The Courage to Cede Power

Has Scotland missed an enormous opportunity to have the expertise of some of the 2 million voices of users feed into the DNA of the new Health and Social Care Integrated Joint Boards?

In common, it appears, with most of Scotland’s national and local politicians, I had accepted that the obligation to have one third sector member, one carer member and one service user member on each of the new boards ensures the voice of the ‘customer’ is built into the new structure. Read More “The Courage to Cede Power”

“None of us is better than all of us”.

At the ‘2 Million Expert Voices’ ALLIANCE conference on 23rd May the afternoon brought a panel and Q&A session based on the Five Provocations for the Future of Health and Social Care. These have been generated through cross-sectoral discussion groups tasked to consider what is needed to transform Scottish society so that all citizens are able to thrive. The provocations are: courageous leadership; nurturing transformation; target culture; emphasising humanity and ceding power (see The three panel members each focused on a different provocation in their talks.

Jackie Maceira, convener of the Scottish Disability Equality Forum, illustrated the importance of emphasising humanity when he described his experience of applying for self-directed support not for personal care but for a personal assistant so that he could remain involved and active in the community. He was taking an approach that was considered somewhat novel, trying to do things in a flexible way to achieve what was meaningful. Barriers that arose around which category to ‘put’ him in, or “but we don’t do it that way” were subsequently overcome, a social worker represented his request to the panel and ultimately he received the personal assistance. Jackie’s message of hope was that life-changing outcomes can be achieved when there is an emphasis on humanity.

Judith Robertson, Chair of the Scottish Human Rights Commission, addressed the issue of nurturing transformation, pointing out that people need to know what their rights are in order to assert them and hold duty bearers to account; something we need to work on in Scotland. Judith reflected that often there are individuals within services doing things as we want them to be done, but in order for this to spread and become the norm it is vital that those people and their positive practices are truly valued and nurtured. As Eleanor Roosevelt said “Where, after all, do universal human rights begin? In small places, close to home…”.

Oliver Escobar, Director of What Works Scotland, took both courageous leadership and ceding power as the prompts for his talk, although he highlighted that ‘ceding’ power might also be seen as ‘sharing’ power… or even creating power by involving 2 million experts. Oliver emphasised the need for a shift from an ethos of individual, ‘heroic’ leadership to recognition that the best leadership is collective, with facilitators bringing together people who need to have difficult conversations. Grassroots community work alone is not enough, he stressed; those at strategic level need to be engaged in order to influence investment, aid decision-making and effect transformational change on a large scale. Oliver advocated devolution to a local level and not only the participation of lobbies but actively seeking the voice of the seldom heard. An overarching theme was the need to move from seeing health and social care integration as a question of services to seeing it as a matter of power, politics and democracy.

Questions from the attendees stimulated discussion and comments about the politics of partnership, the importance of those providing a service having knowledge about human rights, and the view from Oliver that sometimes those collaborations which involve constructive conflict can actually be the most productive. The role of advocacy for individuals was a recurrent theme in people’s stories, with one person’s reminder that even those who are empowered and capable of defending their human rights can be just exhausted by it. Tokenism and overuse of jargon were cited as barriers to participation, while positive examples from as far afield as Melbourne and West Dunbartonshire were presented to illustrate willingness to cede power and do things in a different way.

Take-home messages for me? Particular challenges may include the necessary culture shift described by Judith – maintaining accountability but moving away from a culture of blame and defensive practice and towards a culture of looking for learning. I would argue that much work can be done in the early years, in schools and in parenting support to nurture such a culture. Opportunities for doing things differently are ripe in Scotland right now, with developments such as the new Mental Health Strategy and the work of the Integration Joint Boards. Above all, I was reminded of the power of collective action by Jackie’s “None of us is better than all of us”.

Person Centred Care needed to Transform a Service?

Monday was my first time at an ALLIANCE Annual Conference and I certainly enjoyed myself and found the day to be really interesting and useful.

There was one thing that stood out for me from the day. I attended the “What does it take to transform a service?” workshop. One of the services highlighted was about the Ins:PIRE project up at the GRI which is a support programme for the 5 week period after someone has been treated in Intensive Care. One the users of the programme who featured in the video shown has had an ileostomy formed after surgery and he was having difficulties getting the colostomy bags to stay on and their leaking was causing him to lose confidence about leaving his house. However, as a result of the Ins:PIRE project being there he was able to go back to the hospital and get the help he needed to sort things out.

This really resonated with me as after I has surgery to have a temporary ileostomy a couple of summers ago I had exactly the same problem with colostomy bags not sticking. I had been housebound as a result of my severe Ulcerative Colitis so I had gone for surgery to remove my colon and hopefully reduce the impact of the symptoms of UC and allow me to lead a “normal” life. However, when I started having problems with my colostomy bags leaking it really knocked my confidence and I became a near recluse again given that there had been times when the bags had leaked in public and I had a torrid time cleaning the mess up. Having been through one major surgery I was desperate to try to get out and about and enjoy the Scottish “summer” before I went back at the end of summer to get what was left of my insides reconnected so going back to being housebound was not what I’d expected.

At the time I didn’t know who to turn to: was it my GP, the IBD ward at the hospital that I’d had the surgery at, the stoma nurse or the colostomy bag suppliers? Eventually I was able to be put in contact with the stoma nurse at the local hospital, which was not the hospital I’d had the surgery at, but we were able to try various things to reduce the problem which worked to a certain extent but I was able to struggle through until the operation to reconnect me.

Had there been a service like the Ins:PIRE project in place at both the hospital and time that I was having the problems then I might have felt better able to raise the problem with someone and hopefully find a solution. Having been quite seriously ill and then had major surgery my confidence at the time was very low so I felt that I was being a hassle to the people that I was contacting to try to get help. The Ins:PIRE project was able to help the gentleman in the video shown at the workshop and I was glad to hear that such things were in place, albeit not yet yet rolled out across Scotland.

The 2016 ALLIANCE Conference and the Politics of Possibility

On 23rd May, the ALLIANCE – the national third sector intermediary for health and social care organisations in Scotland, held its annual conference, and at the same time celebrated its 10th birthday. In this blog, Claire Bynner, Research Associate for What Works Scotland, reflects on the people at the event, their activism, and the politics of possibility. Read More “The 2016 ALLIANCE Conference and the Politics of Possibility”

Purple Poncho Players steal the show at the ALLIANCE Annual Conference 2016

A welcome alternative from a full day’s powerpoint marathon, kudos goes to the ALLIANCE for mixing up the usual conference format and opening the show with some hard-hitting drama.  With no disrespect meant to the various other conference presenters, I would hasten a guess that it’s the opening performance by the Purple Poncho Players that will stick in the minds of most delegates as they reflect on the day. Read More “Purple Poncho Players steal the show at the ALLIANCE Annual Conference 2016”