Part of the debate – in the Senedd at 4:47 pm on 26 September 2017.
Thank you for the large number of questions. I’ll try to run through a number of them, but I’ll be happy, if there are any that I’ve missed in the limited time available, to respond to correspondence directly from the alliance themselves, who of course I meet twice a year.
On your point abut NICE guidance, in particular about meeting standards on multiple sclerosis, of course we want our services to improve. What I think is really important in having a plan and having the reports is to recognise the progress we’ve made, but also, as I said, recognising what more we need to do. So, we don’t try and varnish where we are. We try and be upfront about the fact that we want to see further improvement. These are relatively rare conditions. Motor neurone disease, which you mentioned, and which Nick Ramsay regularly mentions in the Chamber as well, is a particularly rare condition. So, it’s covered by both the neurological conditions plan but also the rare diseases plan as well. I set that out, in fact, in the correspondence I sent to all Members in August, in response to questions and letters from Nick Ramsay and others.
So, in terms of where we’re getting about feedback and understanding whether we’re actually meeting our services, that’s part of the reason why the PROMs and PREMs work really matters—to understand what matters to the person and their family, what matters to them, and whether the experience of their care and treatment and the outcomes that matter to them are really being achieved and delivered. It’s really important to me that we achieve something that is understandable across the country and isn’t a tick-box exercise, but really helps us to understand what we’re currently delivering and where we need to improve, and then, of course, to understand whether we’re actually delivering that in practice. That will matter to people with MS, as well as to people with motor neurone disease and a range of the other areas that you’ve covered as well. I do take seriously the point about the need to get evidence of progress on a local basis, but in language that is easy to understand.
We recognise, in and around those people in the health service—including, if you like, the expert patients and advocates—that we can easily use language that is exclusionary and doesn’t make it easy for people to understand what we’re trying to get over and across. I think that is something the health service needs to guard against, so I take that on board and that’s something that I will look at.
On neurophysiotherapy and rehab services generally, I think the points you made, with respect, were covered in the statement, and not just the reference to PROMs in PREMs, but also the investment—the significant investment—by both the stroke implementation group and the neurological conditions group as well, recognising their shared interests in both raising awareness and improving the quality of that rehab service.
On dystonia, I had an opportunity to meet a group of dystonia patients previously, with Vikki Howells in her office in Cynon Valley, so I do recognise there are real concerns about the ability of our services both to have the capacity to deliver timely care, but also other services that take place. So, the issues that you raise have already been raised with me by Vikki and her constituents. We’ve arranged for contact to take place with Cardiff and Vale health board, which actually provides the service that her constituents would access.
Again, I take on board the point about awareness in local healthcare services—GPs and others—but also wanting to improve specialist services around those that are not just Botox clinics, but, as you say, physiotherapy as well.
On the points about cerebral palsy, I think that’s something I need to look at in terms of understating the lower number of referrals in and how we actually make sure that the health service properly understands both the need that exists in north Wales and how appropriately we’re responding to and managing that in the community.