Epilepsy Futures is now two thirds of the way through its 3 years funding from the National Lottery Community Fund, and we were very keen to use some of our budget under spend to commission an evaluation report of the first 3 groups of participants.

We wanted to capture the experiences of the participants to date,  celebrate the way in which their lives had changed for the better, and  learn of anything that we needed to re consider in order to make the best use of the remaining time and money for the rest of the groups to come.

After a bit of searching we came across Colin Duff, a freelance consultant who works in conjunction with SKS Scotland. After some initial discussions with myself, Colin spent time with a range of staff employed here at Epilepsy Connections, as well as longer informal chats with former and current participants.

These chats elicited stories of what being part of the programme has meant to them, and you can read the PDF file of the evaluation report.

We know that this won’t be fully accessible to readers on mobile phones, and are endeavouring to having the document embedded in our main website, which is currently being redesigned.

On Wednesday 14th August, Colin joined us at our Annual General Meeting and gave an overview of what he discovered, along with current participants and past graduates of the programme speaking of how much they had gained from being part of Epilepsy Futures, and what “self-management” meant in reality to them as individuals;

  • finally acknowledging their epilepsy
  • understanding better how to live with it
  • feeling stronger and more able to live with their condition
  • moving on with their lives
  • etc

To finish this post here are some thoughts from Colin himself.

“I was really pleased when I was asked to evaluate Epilepsy Futures. Most of the time when I’m asked to do this sort of thing, I’m asked as a project is coming to an end. That sounds reasonable because it means that I have more to look at, but it also means that I’ve little opportunity to make a difference.

The other thing that happens when you’re asked to evaluate a project at the end of it’s delivery period is that the organisation that leads the project – my client usually – isn’t invested in asking whether and how the project delivered outcomes for people, but is very invested in getting new funding in the door.

That means they often don’t really want an evaluation. They want something that helps them get further funding. They want a marketing document – not an evaluation report.

However, this was a mid-point evaluation. I don’t even remember the last time I got asked to do one of those. They’re a rare bird, but I wish I they were spotted more often.

The good thing about a mid-point evaluation is that you have some history of practice to look at, you have staff in post, you have current participants and past participants who haven’t moved on so much they don’t return calls, or can’t really articulate the difference the project made, and you have the opportunity to say something that can actually be of use to your client in the remainder of the project.

My brief on this evaluation was essentially collect and present evidence of the difference that the project made, and to generate ideas on what it might do differently.

Part way through though, I realised that the nature of the project was quite unusual, if not unique, and that if I was to produce something useful, that a statement of how the intervention worked was at least as valuable and persuasive as the evidence that it did work.

Most interventions that work with people with some form of clinical diagnosis – in fact most interventions – start with the problem, with what people cannot do, or what needs ‘fixed’.

Almost all professionalised health interventions seek to diagnose and repair, with the responsibility for the repair lying with the health professional.

Epilepsy Futures isn’t quite like that. It starts with the potential of the people it works with. It recognises that that potential isn’t quite being realised, and that it is in the power of the people themselves to make change. They may need some support to do it, but it’s theirs to take.

The other major thing that is different about Epilepsy Futures is that, although there is a reasonable amount of content that is factual and practical and supports people to manage their condition, it’s true strength is in enabling the self-actualisation of the participants. It’s about people learning to live well again, it’s about – as many of the participants explicitly said to me – about people getting themselves and their lives back.

Lastly, the final major thing that is different about Epilepsy Futures is that it relies on a group process.

It’s not a dozen individuals in a room, it’s a group of people that over the longer term begins to act mutually.

What do I mean by ‘mutually’?

I mean that people in the group begin to take responsibility not only for their own role in their own well being, but for their contribution to well being and change in others in the group. This is substantial and fundamental change.

People come to the group feeling weary and hopeless and dis empowered – all words that participants used to describe themselves – and change not simply to feeling empowered for themselves, but feeling able and excited by their ability to help each other.

That’s a major achievement, and one that I think participants should be proud of. Also, I’m not just pattering them up, but I think that  staff deserve applause for identifying the need for this kind of thing, for having the insight to design the service and the energy to attract funding, and for having the skills to implement it.

No small feat. I hope they can continue for as long as they are needed.

Colin Duff

 

Peter Dale,  Epilepsy Futures Coordinator