I think it’s worth knowing that nationally, I mean I can’t speak for every single area in the country, but nationally MS nurses are generally encouraged to have newly diagnosed courses. So what we do in Huddersfield and what I’m aware in local surrounding areas is that there tends to be a biannual newly diagnosed course. Ours runs for five evenings over five weeks twice a year and we evaluate that each time. But it’s there for the person with MS, their carers, family members, friends, anybody that wants to come along and support them. And what we try and do at that is have some education. You know, we have a, we have an expert comes and talks, we have individual therapists, we do some topical things like the dietician, like exercise. So we try and vary it so that theres something for everybody. Because we are aware that MS isn’t just about the person with MS but it’s about the other people that are affected by it as well. So I’m sure nationally I would encourage anybody that’s been newly diagnosed to look at their local area and see whether these courses are being run as well.

And do you find that people, relatives and family members do come to that course?

Yes, yes. I mean I would say theres about 70 per cent uptake. And how we evaluate, we evaluate on day 1. So, and we do it so that it’s the person with MS and the person not with MS. So they each do their own little evaluation. And then at the end of it we re-evaluate as well. And weve certainly found that there is evidence that knowledge and understanding has increased from the beginning of the course to, to the end. And we also ask them, Is there anything else that, that you would like to include? And the carers tend to get quite involved in those courses. Because I think the person that’s newly diagnosed, and that can mean anything from, say loosely from three, four months up to a year, they’re still quite reticent, they still sit back. Whereas the carer or the, the other person is a little bit more confident and asking questions, What about this? What about that? How does this work? So I think that that works quite well because they’re supporting each other in a lot of respects. And the same with children. Weve had quite a few children come and ask questions about their mums or their dads. So it’s, I think that works well. And I know nationally there are many many areas that do that on a regular basis.

Is there any more specific source of information and support for children or young people who might be involved in looking after a parent?

Some people do, well, theres a young carers’ group which is run through Social Services. But you’ve got to be 8 and above for that, to be able to join that. But again it’s about ensuring that children are involved, that they do feel that… they get to know me as well as their parent, so that they do feel comfortable. Because these relationships are ongoing for many, many years, so you see the children growing up. So it’s nice if they do get to know you, they’re comfortable with you. Theres some good literature, theres some nice videos or DVDs, so it’s about making sure that, that they have that if they want it. And quite often just, you know, sending it to them in the post with their name on it as opposed to sending it to their mum or dad, and that makes them feel that they’re involved. So again it’s about an individual, the differences and what different people respond to.

Can you say anything about the sort of aids and equipment that people might need to help them and how they get them?

Yes. I mean again generally it’s about responding to changing needs. So what we like to do in the first instance, if somebody’s newly diagnosed, then I will introduce them to our rehab team. They will have physio assessment, OT assessment. Aids and adaptations tend to fall practically with the occupational therapist. So were looking at how does somebody get around their home. Would they benefit from a rail outside their door just so they can step out? Would they benefit from an extra rail on the stairs? Looking at how do they shower or bath, you know, is there anything that would promote their safety in those areas? Looking in the kitchen, would sitting preparing a meal be easier than standing preparing a meal? So quite often were looking at very small things. We can, we can look at cutlery, you know, that may be a little bit more weighty, so it’s easier to handle and use. General advice on the types of even, you know cups, mugs. So theres a lot of practical advice and small aids and adaptations. Obviously when you get to physiotherapy you’re looking at sticks, you’re looking at walkers. You know, again a big fan of introducing things like wheelchairs very early on because they conserve energy, you know, they allow somebody to continue to participate with the family. Whereas, you know, going out to look round maybe a theme park or a museum could be absolutely exhausting even for somebody that is still, you know, independently mobile. But using things like wheelchairs for short distances, advising somebody, Why don’t you look at electric scooters? You know, the kids’ll love it. It’s a bit of fun! So it’s not saving wheelchairs and scooters on somebody severely disabled, it’s about saying, Let’s use them sooner rather than later because, you know, it takes away the fear of having them as part of their life. And, you know, they come and go. If somebody’s poorly, use it. If you’re well, put it back in the cupboard. So I, you know, I’m a big fan of that.

Do people resist that at all in the early stages?

Yes, initially. So we get a lot of, you know, there can be tears, there can be just sheer terror at the thought I’ve mentioned a wheelchair. But once you’ve gone past that stage and it’s about I suppose a bit of cognitive behavioural therapy, it’s about giving different scenarios. And once somebody’s mindset has changed it can open up a whole new world to them. And that’s fabulous to see and for them to come and share that with you. That can be actually quite remarkable, and yet they were absolutely terrified in the beginning. So that is something that can make a massive difference very early on.

I don’t think there is any one answer to the treatment, management and living with MS. I think it’s about identifying your local support, your local services. Utilise them. Don’t be frightened of picking the phone up. It’s not just about drug treatment. It’s about therapies, it’s about complementary therapies, alternative therapies. And, you know, it’s about thinking outside the box quite often. So just keep communicating with the services that are available to you.

Just talk to each other. You know, don’t isolate yourself. Don’t assume that it’s you that’s, you’re the only one that’s living with the MS. Your whole family is living with it. And the, the one thing that I, that I say to many people is, Be your own best friend. You know, if you, quite often it’s hard to sort of, to give yourself advice or step outside yourself and be your own best friend. What advice would you give to your best friend, if you’re struggling with the situation. And quite often it’s much easier to do that.

Well usually what we do is get somebody to tell us their story, how have they eventually got to the point where they’re sitting talking to somebody like me. So it allows them to sort of feel comfortable to talk about the process that’s been involved. When I meet somebody for the first time I’ll ask them how much they know and understand about the diagnosis in the first place as opposed to just sitting and telling somebody what a text book diagnosis is. So it is very much geared to the individual. How much they already understand and getting an idea what’s the best way to try and explain it to them.

Some people can be very technical, they want all the science behind the diagnosis. Other people want to know the basics and understand what does it mean for them for the rest of their life. So it is catered to the individual.

Generally we talk about MS being a long term neurological condition that affects the central nervous system including the brain, the spinal cord and the optic nerve. We can then go on to discuss how we don’t know what causes MS, we don’t have a cure, however we have lots of different treatments that will be geared to the individual’s MS, because it is individual, it is unpredictable, and they can’t compare it to anybody else they may know or somebody else might know. So it’s alleviating a lot of the fears as well and asking them as well what is the fear of having this diagnosis’ and trying to support them with it.

In relation to the carer it’s very much about what role do they want to have. Do they want to have a hands-on role? Because that, I don’t think we should expect that just because somebody is a husband, a wife or, you know, children. They might not necessarily want to perform that role with the other significant person. So it’s about identifying that first and not having preconceived conceptions that they should be there and available. You know, well look at what the individual’s needs are. So that’s again about exploring the options that are available and about explaining that we do have to refer through Social Services. They will look at, assess what are the care needs, not just what they need but what do they want as well, because it’s very much about individual choices. So it might be that we decide that someone needs a certain level of support but that person might not want that level of support. So weve got to balance quality of life as well as safety, if you like. So it’s, it’ll be depending on the role that individual has. You know, there can be extensive packages of care available if that’s what they want. Which means that that person remains a wife, a husband, not necessarily a conventional carer. So that they are able to go and do their job, come home, and be a wife and husband to that other person. So there are extensive packages of care going from one visit a day to, to 24-hour care if necessary.

And that sort of support comes through the Social Services department, does it?

Yes it does. I mean that, that’s changing all the time. So it is, it can be difficult to keep up with what is available, what is means tested, what isn’t means tested. Because obviously financial issues practically are very important. Even if somebody is on benefits, quite often those benefits are being used for everyday practical things that are required.