One of the areas which our supporters are most interested in is MND research.  New developments, discoveries, progress being made, work being done to find a cure.  As you may know, we fund a rolling programme of PhD studentships, the current work of which you can find a little out about here: .

What might come to mind when thinking about MND research is a test-tube-and-petri-dish picture, all lab coats, Bunsen burners and fume cupboards.  But there’s also other work being done – we’re funding the Scottish MND Register, for example, which is designed to look at incidence, prognostic model, biological tissue samples and care standards. You might have read more about this in Aware Spring 2011.

We’re also looking at how we provide our services.  You might have seen me tweeting a couple of weeks ago about talking to someone involved in a social research project which we’re currently funding:

Screengrab of twitter message about talking to our social researcher, Lucy.

So as promised, here’s the blog…

As you probably know, the service we spend most money on is the Care Advisory Service, a dedicated group of clinical specialists who see every person in Scotland with MND – but as I detailed in that blog, caseloads have increased quite a lot over the past few years.  So now seems like an opportune moment to examine how we maintain the standard of service we provide to our clients.

I talked to Lucy Robertson, who works for the research consultancy who are currently carrying out a project at our request.  This project examines our model of care – specifically the Care Advisory & Equipment Loan service.  It’ll take around 6 months or so, and we hope to have something to show around Autumn / Winter time.

Lucy and her colleagues are spending time interviewing the Care Team and other MND Scotland staff, as well as clinical NHS staff outwith our service, like consultant neurologists, who are usually the people to deliver a diagnosis of MND, as well as dieticians and speech and language therapists.  They’ll look at models of care used in other parts of the world, and also at services for other neurological conditions, where we might be able to find examples of best practice which would be transferable to our services.

Importantly, they’ll also be spending time listening to what our clients have to say – as those who use our services are of course best placed to tell us about their experiences.  To that end they’ll be attending some of our support groups, although Lucy was keen to stress that they didn’t want to intrude.

When they’ve collected this information, the team will put it all together and brainstorm ideas, collaborating with us in order to come up with suggestions for a new or amended service – Lucy again was keen to stress that they’re looking for something that will work for MND Scotland, that they’ll be looking for options which are achievable, & which can operate in the real world.

This won’t necessarily be about a huge change – or maybe it will, we just don’t know yet – what we’re hoping is that Lucy and her colleagues will be able to use their expertise to advise us how best to move forward, how to ensure that we are able to deliver the best possible standard of care for our clients.  We know how important these services are to our clients; and we know that we have a responsibility to ensure that they’re the best they can be.  We need to make sure that we’re spending your money in the most effective way.

Thanks to Lucy for her time – we’re looking forward to seeing the results of the project!  Thank you also to all our donors, whose kind support makes this research possible.

Want to help?  MND Scotland is in its 30th year.  To help us provide care, support & information for people affected by MND in Scotland, as well as fund research into the disease, text MNDS30 £3 to donate £3 now.