Hello, my name is Laura and I am the Self-Directed Support Manager in Alzheimer Scotland. It is my job to help people living with dementia and their families and carers to get more choice and control when they are accessing support via social work.
Self-Directed Support is a new piece of legislation that came into force in April 2014 and that legislation says that people should have more power, choice and control over the support they get. Scotland also has a ten year strategy for implementing Self-Directed Support and we are already over seven years into that strategy.
We know that many people still don’t know about Self-Directed Support and what benefits it might offer them. That is why myself and my colleague, Margo Sweeney, a Dementia Advisor in Glasgow, are working together to promote Self-Directed Support directly to people who haven’t had the opportunity to explore it before.
As an experienced Dementia Advisor, Margo regularly organises Cafes for local people living with dementia and their family and friends to come together; to socialise and get accessible information and advice in a very informal way, and at a pace that suits them.
Margo felt quite strongly that occasions like Cafes would be the right environment for starting conversations about Self-Directed Support. However, she was equally keen that the Cafes should remain totally focussed on peer support, without agendas and speakers undermining this important ethos.
Therefore Margo and I have worked together to develop opportunities that have felt very close in format to a Cafe but with the upfront offer that I would be available to provide information and answer questions about Self-Directed Support. We put a bit of thought into how we would promote these events to people. To date we’ve described the events as Information Cafes. We chose this description to try and engage with people who may be very wary of participating in an activity that is described as a ‘meeting’ or a ‘workshop’. We have been keen to try and engage with people who may have never been to a meeting or sought help from Social Work in their entire life – to try to be as inclusive as possible.
We are very clear in the invitation that the event is about thinking about help people might need and getting information about how to access that. If you’ve never heard about Self-Directed Support before, met a social worker or had an assessment, the language and the event format are very important. If it’s overwhelming or unintentionally intimidating, people will feel put off, not empowered. We do mention Self-Directed Support but we make sure there are enough other plain English terms in there that will attract people with dementia and their family and friends to attend. Oh and we also emphasise the cuppa and cake!
We have been promoting the Information Cafes to people who have come to the Glasgow Dementia Advisors with enquiries or to people who regularly attend Cafes and other activities in Glasgow. As should happen with a genuine pilot project, we’ve had mixed results. The first event we ran at Bridgeton Resource Centre in November 2016 had over 20 attendees and there was a real buzz about the session. On the other hand, only one person turned up to the second session in February 2017. However, we got to have such an in-depth conversation with her and we were able to really tailor the information to her specific situation. There is such a value in that because trying to explain Self-Directed Support in very general terms can seem meaningless and vague. It’s much better to have quality conversations about someone’s life and relate Self-Directed Support to that.
With that in mind, Margo and I encourage people to follow up with either of us, if they want to explore Self-Directed Support a bit more in future. We try to be really clear that it’s ok if people don’t feel like they “get it” the first time they hear about it.
We’ve had many quality conversations with people at Information Cafes about Self-Directed Support. When we had explained the new Self-Directed Support legislation to one woman, she was quite perplexed and asked us, why, if SDS was such a big change that people had to know about, had there never been TV adverts to promote it, like there were with Power of Attorney. We think this is a very good question….
After hearing other carer’s experiences shared at the Information Cafe, a second carer told us:
“Until today I thought it was just me getting nowhere with getting any help from Social Work. I thought I was doing something wrong and it was my fault. But now I realise you’re all having the same problem.”
During really good conversations is a great time to raise the topic of Self-Directed Support so I do also try to attend Cafes at other times, so people get used to seeing me and so they are reminded about Self-Directed Support, even if in a very subtle way. I get the impression that for some people, I’m the woman who reminds them of that thing they need to get round to doing. We need to respect the fact that timing is key for families affected by dementia. People need to have access to information and then be encouraged to follow up with us when the time is right for them. We are talking about increased choice and control, after all.
We have also started to invite external colleagues from Glasgow Centre for Inclusive Living (GCIL) to our Information Cafes. GCIL provide support to people in Glasgow who are organising their own support. They provide advice and have many years of experience of supporting Personal Assistant employers. A representative from GCIL has attended one of our Information Cafes and talked about their potential role supporting people living with dementia, as well as providing useful information resources.
GCIL are a key organisation in Glasgow for people who direct their own support and we are really keen to work in partnership with them. We want people with dementia and carers to know about them and get to know what services they offer. When people with dementia and carers feel the time is right for getting more support, we want them to know about as many local allies as possible.
Margo and I wanted to share what we’ve been doing in Glasgow and to find out if other people and organisations are trying similar things. It’s good to share what is happening and what works (and what doesn’t!).
We don’t think what we are doing is rocket science or by any means perfect. We are trying things and tweaking them as we go, reacting to how things play out. We do know that explaining Self-Directed Support can be complex and different messages work for different people. We’ve been struck by the number people who may have literacy issues. Providing face to face, well-paced information is really important. This reinforces the need to provide personalised support at every stage.
We are just trying to create as many opportunities as possible to visit and revisit Self-Directed Support for people who might not have it on their radar yet. We want to keep building on this work, reflecting further on what does and does not work and adapting it as needed. We very much want to look at ways of actively involving people living with dementia in discussions about Self-Directed Support as early as possible in their diagnosis – to support their involvement in planning ahead for how they wish to be supported in the future.
The reality is that the barriers, delays and obstacles faced by people who are trying to access Self-Directed Support make this very difficult to achieve. We hope through our ongoing informal conversations promoting the rights of people with dementia, to be able to collect ‘case studies’ as evidence to challenge the unacceptable barriers that people are encountering.
We must never forget that the power, choice and control should lie with the person with living dementia. We all have a long way to go before we see Self-Directed Support delivering as it should for supported people in Scotland but this is what we are trying in this patch.
As well as the work I am doing with Margo, I’m also working with many Dementia Advisors, Link Workers and other internal and external colleagues across Scotland to promote Self-Directed Support to more people living with dementia and carers. We are trying different things in different localities, depending on what we think might work.
Let’s talk self-directed support
I’m also keen to hear from anyone else who is interested in promoting Self-Directed Support to people with dementia and we can have a chat about where to start. We know lots of people are already out there doing this work; we look forward to hearing about your experiences; the pitfalls and the successes!
This booklet on Self-Directed Support is for people with dementia, their families, friends and supporters. Professionals should refer to the latest Scottish Government guidance on operating self-directed support schemes at http://www.selfdirectedsupportscotland.org.uk
This week’s blog is by :
Laura Finnan Cowan
Self-Directed Support Manager
As Alzheimer Scotland’s Self-Directed Support Manager, Laura’s job is to help make it easier for people living with dementia to access Self-Directed Support. Laura can support individual enquiries, give talks and info sessions about Self-Directed Support to groups and provide advice and training to professionals.