Gillian shares Arthritis Care's self management journey over the last 10 years and how much has been achieved.
Maybe it’s just because I’m getting older but 10 years seem to have flown by! However, as I approached writing this post, I have been reflecting on just how much we have achieved in that time…
In 2008 when Gaun Yersel’ was launched many of us had not heard of self management. We were perhaps familiar with the process of looking to manage our long-term health conditions, the importance of peer support, or understood the importance of those with health conditions being empowered to take the best care for themselves. But in my experience – and I am sure for many others – programmes and projects in the abundance we have now to support that process were unheard of and healthcare professionals equipped to have those holistic conversations seemed very far off. I don’t mean to undermine the work that was taking place then but what we now understand as self management has been solidified, work multiplied and rolled out across the country.
As I reflect back, I also reflect on our Young People and Families Service which is nine this year. I don’t think it’s a coincidence that a year after Gaun Yersel’ we were set up to run peer support events and workshops for young people. The government support of this agenda, I believe, has played a huge part in moving this work forward and creating traction. Initially as a project with three weekends a year we are now a service covering the whole of Scotland delivering 18 events each year.
This increase in delivery is partnered with a larger staff team, funding to cover development of our delivery, and now working in rheumatology clinics across Scotland. To enable us to grow and develop as a service we have needed the right environment to exist in Scotland alongside our own ambitions and hard work. So, what has caused this environment to exist beyond the Gaun Yersel’ strategy 10 years ago?
I can’t give you the definitive answers, but I can tell you what has made the difference to me and what we’ve observed as a service.
In March 2011 I was a volunteer with Arthritis Care and attending the then LTCAS, now ALLIANCE, conference. It was an amazing event for me full of learning and engaging with others. So many people feeling the same challenges personally and struggling with the ‘system’ as well as lots of inspirational stories about projects and programmes that supported people.
A massive moment for me was in one of the plenary sessions Dr Campbell Christie spoke to his commission report. As I listened I was internally agreeing with everything he had to say. He got it! He knew what change was needed; wow! I decided then that I wanted to be part of this sector, part of this process to make care for those with long-term conditions better. He influenced so much more than me though and I believe his report has had a huge impact on Scotland’s healthcare services and support today.
It’s 2013 and I am working for the ALLIANCE as part of the Reshaping Care for Older People team, supporting the Third Sector with trialling integrating health and social care services and we hear that this is going to be rolled out for all adult services across Scotland and it’s going to make things much more joined up and straightforward for those receiving services. Well, while we know things have not been plain sailing since, I do believe that the seismic shift in ways of working has opened doors to new, more interconnected ways of working – not just between health and social care. I feel that there has been a culture shift which creates an openness for third sector organisations to approach colleagues in health (as is our experience) and vice-versa.
It’s 2016, I now manage Arthritis Care’s Young People and Families Service and we have just found out that we have funding for our Joint Potential project from the Self Management Fund under the integration category. We were ambitious in our application to grow our delivery to young people and work embedded in rheumatology clinics. We were resolute in our plan, but apprehensive about how successful we would be in reaching our target of 5 areas. Working with the health service has historically been challenging for the third sector: we have different cultures, different ways of working, and oftentimes different approaches. However, the environment we are now in, although not without challenges, has certainly created much better fodder for collaborative work to grow.
So now it’s 2018, where are we?
As a service we have service delivery and staff embedded in two rheumatology units with a third in the process of being set up. We have programmes to deliver work in both paediatric and adult rheumatology settings including drop-ins and support to transition clinics. We are running self management workshops on disease management skills from pain and sleep management to an arts project which has its exhibition at the Kelvingrove Gallery in Glasgow this October.
I am incredibly proud of what we have achieved in 9 years but it has had its ups and downs. Our biggest challenges? No surprises here – funding! It’s impacted our service delivery – of course – but we’ve heard from healthcare professionals that it has made them wary of referring young people as they don’t want them to find out the support is no longer there. We have also faced other challenges; difference cultures in different organisations and sectors have led to things often taking longer than we would have hoped. But we are all always learning and the negotiation and understanding gained through those experiences, while sometimes frustrating, were always worthwhile. We have encountered challenges with participant numbers and referrals and overcome this by the usual methods of flyers and using social media but our biggest shift has been working more closely with our health professional colleagues to not only help them to understand our work better but also to be present in the clinics and meet the young people where they are.
Through linking our services to support young people we can truly achieve a holistic service. What we have to offer does not replace but instead compliments the support offered by our health colleagues and I believe we have needed the maturing of both services for us to be in a place where this can take place. But we still have work to do to achieve our ambition of ensuring every young person with arthritis and related conditions in Scotland has the support and information they need to live as well as they can with their condition.
So where are we beyond our service…
As a nation, we have the infrastructure and ambition for integrated health and social care services, we have huge numbers of self management programmes across the country, we have millions of pounds that have gone into funding that work. We have grown and developed a lot in this area and I know that we are ahead of many other countries in Europe – but we still have plenty of road left to travel…
I believe that we still do not have the infrastructure to ensure people with long-term conditions have all the support they need to live the best life they can. I believe we need longer hospital appointments so that patients have time with their doctors and support staff to discuss more than medication to enable us to be truly person-centred. I believe we need more programmes like ours that embed Third Sector support in Statutory Health and Care services to offer a truly holistic approach. I believe we need more reliable funding for the third sector, who deliver the lion’s share of self management support. I believe we need to help our healthcare colleagues to grapple with how they embed person-centred approaches into their consultations. Saying that, I was told recently by a researcher that large scale change usually takes 15-20 years to take place. We are nearer Christie’s vision than we have ever been, so will we get there? Maybe ask me again in another 10 years.