Hot on the evidence trail

Since their establishment in April, the three work streams have been hunting for evidence in a variety of places. A recent meeting provided an opportunity to look back at their activities to date and plan the way ahead. One of the first decisions was to extend the project by a couple of months to allow more time to conduct the search, explore findings and analyse their implications. This means the project will finish at the end of October, with a presentation and workshop at IRISS’s Champions event.

It is interesting to see that each work stream has taken a different approach to the quest.

The work stream on SDS for people with mental health conditions sprang into action very quickly, holding a first exploratory meeting early in May. A review of the literature was initiated and is now well underway. This was followed by a successful focus group last week. Participants were drawn from Falkirk District Association for Mental Health, NHS Lothian, Falkirk Council, Community Care Providers Scotland, Scottish Recovery Network, Penumbra and Highland Council. Importantly, among their number was someone with personal experience of using care services, and also a carer.  Between them, participants brought a wide range of perspectives to bear.  Each presented the learning from a piece of work they had been involved in or are planning. If they hadn’t been directly involved in a piece of work they talked about what the desired outcomes of any work should be. Participants then continued the discussion by looking at the quality of the evidence. A key element of the overall project is to reflect on the value of different types of evidence for different audiences and purposes. Work stream members will shortly be reconvening to decide on next steps. Watch this space.

Meanwhile, members of the work stream looking at SDS and people from BME communities are thinking about organising a seminar.The purpose would be to look at the experience of BME disabled people and the potential of SDS to begin to mitigate current disadvantage in terms of lower access to mainstream services.  They also want to learn from the experience of others, for example, in England or Northern Ireland where work is more advanced.  Having pulled together evidence at this seminar, they’re thinking of using it to raise awareness of the specific issues of disabled BME people and carers. By engaging with existing SDS fora/workstreams they might also find out more about evidence gaps and needs.

Lastly, but in no way leastly, the work stream exploring the implications of human rights for SDS has decided to focus specifically on eligibility, resource allocation, assessment procedures – and the outcomes that ensue. They’re in the process of pulling together existing evidence on these topics in order to identify gaps. That evidence includes feedback from a workshop at Glasgow Disability Alliance’s recent Learning Festival, which considered human rights and independent living.

As part of their evidence-gathering exercise, this work stream is asking blog-readers for help. They would be particularly keen to know about:

  • any information or case studies on how the Resource Allocation System is being applied, particularly in relation to the Self Evaluation Questionnaire, and how these impact on assessment and outcomes
  • any case studies/anecdotes on charging and eligibility decisions

It would be really helpful if you could post here anything that might be relevant to this work stream – or indeed any of the work streams.


IRISS Insight on SDS – can you help?

One of the aims of the SDS Evidence Explorers project is to consider the value and role of different types of evidence. This includes the practical hands-on experience of practitioners, people who use SDS, provider and voluntary sector organisations, as well as evidence from research.

Regarding the latter, we are proposing to produce an IRISS Insight on self directed support. These will provide a concise, accessible overview of the existing research evidence and pull out the implications for practice. Although the focus for this Insight will be on SDS in Scotland as set out in the Bill, it might also draw on relevant evidence from England or Europe. Obviously there won’t be scope to go into any one aspect of SDS in much depth, but we want to present as accurate a ‘big picture’ as we can.

Has your organisation carried out research on SDS? Do you know about any research that it would be helpful to refer to? This might include studies carried out by voluntary, public or private sector organisations as well as by academics.

If you do, it would be really helpful if you could post details below – of authors, title, date of publication, web-links (if published on the web) – by 20 June. If you prefer, you could send this information to me in an e-mail: .


Guest blogger

From Pippa Coutts, the Scottish Union of Supported Employment (SUSE)

SUSE is working on a capacity building project, funded by a grant awarded by The Scottish Government as part of their programme: “Implementing the National Strategy: Building the Capacity of Providers”.

SUSE’s members (generally providers of specialist employment services for people with disabilities) are thinking about the links between self directed support and effective employability support. They are concerned that there may be a lack of knowledge about supported employment amongst workers who are assessing self directed support applications or directing care plans.

SUSE members and events have highlighted a need to spread awareness of supported employment, its features and outcomes, if it is to be offered as a possibility to individuals taking up self directed support. This could lead to individuals’ options being narrowed and supported employment being excluded from SDS packages, although employment and supported employment is a recognised way of promoting inclusion and improving health.

The SUSE project would therefore like to engage with social work staff involved in developing and delivering self directed support across Scotland.

For further information, please contact Pippa Coutts on:

tel: 0751 399 7664


Mind the gaps

They came thick and fast from all sides, through networks, a membership survey, targeted consultation with key stakeholders, random e-mails, help-line phone calls, conference feed-back and, of course (two excellent) blog posts. Many thanks to all of you who contributed information about gaps in the evidence on self-directed support. You may be unsurprised to learn that we ended up with rather a lot! Although to start with the flurry of issues seemed very diverse, gradually some broad themes could be made out through the blizzard. Key features of the emerging evidence-gap landscape included:

How will SDS/ could SDS reflect human rights? What about the social model of disability? Will it support all strands of independent living, or is it just choice about basic living/ subsistence? Will it work? Will it lead to better outcomes?Choice and control: will people have genuine choice and control, why people choose what they do, lots on information needs and provision, what choices SDS does/ can/ should support, how easily will it adjust to fluctuating needs or changes in circumstances (including moving into paid work).

Systems and practice:

  • Finance: lack of transparency about finance and package costs, evidence that SDS is not just a cover for cuts, the mechanics of budget-pooling
  • Involvement: how involved are people who use services in developing local authority policies and processes
  • Assessment: assessment methods, uniformity, challenge mechanisms
  • Alignment: with Adult Protection and the Criminal Justice system
  • Commissioning: shifting commissioning from block contracts to individual funding
  • Risk: how assessed and managed

Roles: i
mplications for staff development and the roles of others, like Community Planning Partnerships, Reshaping Older People Partnerships and the wider community.

Equality: implications for different impairment groups, including people with mental health issues, sensory impairments and/ or complex needs, evidence of equitable treatment, particular issues and barriers for BME groups, younger or older people, LGBT, faith groups, etc.

how easy is it to access SDS? What are the barriers and where in the process do they arise?

Support: what is currently being provided, what more is needed, the role of advocacy.  

The challenge we then had was to pick about 3 or so gaps out of the multitude and turn them into work-streams for more in-depth exploration. There were a  few that could be ruled out because others were known to be working on them already, though it still left a large number of possibilities. Nonetheless, we managed (somehow!) to identify three main work-stream topics:

1. Evidence on issues for people from BME communities and people from accession countries:
which might include exploration of choice, barriers, access and uptake, ethnicity and complex needs.

2. Evidence on issues for people with mental health conditions: perhaps exploring barriers and arguments against individuals accessing SDS, risk aversion, and the particular implications for younger people. It is possible that some of findings might be relevant to people with fluctuating conditions and needs more generally.

3. Evidence of human rights implications: areas that the work-stream might look at include the implications of human rights for resource allocation systems, eligibility criteria and power-shifts. It could also explore how/ if human rights are evident in outcomes and whether they signal unmet needs.

So now we embark on the next stage  of our journey of exploration. If you know of anything relevant to the work-streams, whether about issues they might consider, evidence gaps, evidence of what works or sources of evidence, please do post a comment. And if you can think of important gaps that we’ve completely missed, it would be really helpful if you could let us know about them. It would be great to develop a comprehensive map of the terrain; an overview of where further evidence is still needed, so that something can be done about it, before we all find ourselves falling down the gaps.


SDS Evidence Explorers set off

There is a great flurry of interest and activity around self-directed support (SDS) at the moment. That isn’t to say that everyone shares the same understanding of what it means, or that they know how to put whatever they understand it to mean into practice. Expectations of what SDS will deliver are in some cases very high. It could offer people who use services the promise of independent living  – of being able to live their lives with the same freedom, choice, dignity and control as other citizens. It could be a vehicle for promoting social inclusion and social justice. In stark contrast, there are fears that beneath the shiny surface lurks an agenda to cut services for people who very much need them – with quite the opposite results.

What are we to make of this? As ever, a good place to start is by reviewing the evidence that exists and, where there are gaps, finding ways to plug them.  This is the thinking behind IRISS’s new ‘Evidence Explorers’ project. Although there are obvious limits to what can be achieved within the few months of its duration, it aims to contribute towards strengthening the evidence-base to inform the development of SDS, so that all concerned are better equipped to make service user choice and control a reality.

There are potentially many parties with a role to play in bringing this about. Obviously social service practitioners and providers need to know how to respond.  They need to be supported by institutions with the right systems and culture to support user choice. Individuals who use SDS, or who would like to, might need support from user-led organisations or independent advocacy. But there are others too, including policy-makers, scrutiny bodies, academics and researchers. Most importantly, all of them need to be talking to each other, listening to each other and learning from each other. Their different perspectives are themselves a vital source of evidence.

With this in mind, IRISS brought together a range of key players to explore the evidence and generate more through co-production. We set off last week, when the ‘evidence explorers’ discussed the meaning of co-production (a project in itself!) and how we were going to work together. We considered the meaning of self-directed support. Obviously, the SDS strategy defines it in terms of choice over delivery options. Whichever is chosen, services need to be focused on the choices of the person using the service.  The group also began to identify key issues that we need to know more about. They will now go out to their networks to gather more evidence about evidence gaps.

Usually, ‘communities of practice’ are set up to facilitate debate and information exchange between members of one of the groups involved, such as practitioners or providers.  We hope that this blog might provide a focal point for dialogue between members of different groups, all of whom want to see SDS deliver user choice and control and all of whom collectively can therefore be thought of as one community of practice.

As we set off on our expedition, none of us know quite what we will discover. We know where we want to get to, but don’t yet have the evidence that tells us how to get there. To start with, it would be great to get wider views on what the key evidence gaps are.  If you have any thoughts about this, please do add them below. Comments (on this or any other aspect of the project) are very welcome at any point up until mid-July and can inform the final report. However, after Easter the ‘co-production partners’ will be selecting a few gaps for more in-depth exploration and evidence generation, so suggestions on evidence gaps received before then can be taken into account in developing the next stage.

Please join us on what we hope will be an exciting voyage of discovery!