Social services are absolutely wonderful with what they can do. I mean they are so, the poor things, they just tear their hair out most of the time because so many people lose, every time the government decides that they’re going to cut this budget or that, well, they tell people that they can’t have something and then, all of a sudden, the government changes its mind and gives a whole chunk of money to this person but not to that person. And I think that they do a wonderful job trying to deal with that. I think my only criticism is that there is a lack of information when there is a hospital procedure, like an operation or a procedure. The information about what happens afterwards, when you go home, especially when your husband has only been in for a few hours because they wanted out, no germs, no bugs, thank you very much, is very limited. They give you a bit of sticky plaster and a spare and some paracetomol and send you home and I think that is terrible. That is counterproductive because within two or three days, that person is back in hospital again. But you’d think that that would be a self-evident truth wouldn’t you because that’s what all the statistics say as well but it doesn’t seem to it doesn’t seem to filter through the levels does it, which is just odd.

I think as far as health and social care is concerned we have had a very good experience. Everything from the ambulance man to the specialist top consultant, weve been very fortunate. I do wonder sometimes whether that has been made easier because were sort of almost talking professional to professional, were coming from the same sort of background. And certainly it would be harder for people who perhaps didn’t understand their symptoms or their disease in the same way as, as, as weve been fortunate to be able to do, to be able to communicate and really understand what the doctors were saying.

By and large I think the doctors do a great, a great job. The hardest thing that weve found has been silence. And I, I know there are people who don’t see their doctors as frequently as we do, for example. We have six-monthly check-ups, almost whether he needs them or not. And that’s really helpful because you can, you can make a list of your questions and, and every six months you get the answers. Whereas I know my cousin, who was recently diagnosed with MS, was just left high and dry. No future appointment made for follow-up of any sort. And that seemed particularly difficult because she was late onset. She wasn’t diagnosed until she was in her 40s.

So I think silence is the hardest thing to cope with. And so, being proactive, you can find the answers to your questions. But I think theres a really important role for the health service to, to keep signposting people to what else is available. Even, you know, like the, the local charity gave us a signpost towards the taxi card scheme to help subsidise transport. We didn’t know about that; that’s a really practical help. Yes, Just keep talking is the most important thing.

With the exception of our first consultant, the one who sat on the fence, I would have to say from our GP to our specialist to the chap who came round from the council to demonstrate the gadgets to the woman who came demonstrating the various injections to the new physio that my wifes recently started with, I would have to say everybody has been absolutely fantastic. Very, very understanding, very patient, very knowledgeable, even with something like MS, which, as I say, has got so many different manifestations. I would say to them just keep doing it , keep doing what you’re doing now because the people that weve had contact with have been nothing short of superb and even though there is no miracle cure out there and theres next to no prospect of my wifes condition ever improving, having people like that to talk to, to explain things to, to help is great. Simple as that. I can’t put it any simpler than that.

Looking back over the whole experience are there key messages that you could offer to health and social care professionals that might help them to improve the services that they provide?

Yes I do I think that the MS support groups that exist are fine they usually meet during the day which if you are a working partner of somebody who has MS not much help there. I think it would be really lovely if, what I would have appreciated would be to have had somebody as my mentor, somebody I could have spoken to who’d had experience of living alongside somebody with MS.

I think it’s this feeling that it’s, you that are doing it wrong, it’s a bit like parenting theres got to be a book somewhere that will tell me how to cope with this, there isn’t a book but to have had somebody to whom I could have spoken to in the same way as I have spoken to my friend who has a brother with MS, I think I would have appreciated that because the, the aloneness although you know you’re not, to be able to form a friendship or a relationship with somebody who you can talk to, who would understand what it feels like because we all have the same emotions that can then sort of say well yes actually I can understand what you’re saying and so you’re supported in a sense that’s not only physical and mental but emotionally as well.

Because otherwise you’re fighting on all fronts and I didn’t do a bad job but I didn’t do well, I didn’t do as well as I could have, had there been somebody there, I mean there must be enough people who have been through this who I’d hold my hand up and say yes if you’ve got somebody who’s going through what I have been through, I would more than happily say theres my phone number phone me as and when. I don’t want to be a friend and move into a social situation but on the end of a phone. I think it’s support in that sense, maybe meeting a group’s helpful, I wouldn’t know I never got there. On a one to one it might be.

But, I don’t know, any kind of psychological support that was maybe the only thing that I might like. For me and for him. He was, he wasn’t good but I was trying to support him. But nobody was trying to support me and, and I remember at the beginning, the, the first thought every morning, especially at the beginning and still now when I leave my house, is how will he be when I come back home? Will it be a good day? Will it be a bad, bad day? You know, because you never know. So, you find, you, I leave you in bed and you’re very good, thank God, how’s he going to be when I come back? So that, that is why I thought that maybe that was missing, someone asking me, Do you need something, darling?’ [Laughs].

Could that be any of the people who, who, who’ve you seen? The consultant, the GP, the MS nurse?

No, I don’t expect the consultant to worry too much about me. But the GP or the MS, the MS nurse maybe. But I never thought actually to tell, to tell the MS nurse, Can I have an appointment with you because I don’t feel very well? But again, the MS nurse is for the MS people and I know I’m MS people, my husband is, my husband has MS, but I haven’t do I have to, between brackets, waste the time of this professional, that is meant to look after the people that actually need her? You know what I mean? I mean, her time has to be dedicated to the people that really need it. Me, I’m a secondary actor in this, in this process. Although I think it’s crucial for me to be as, as well as possible in order for my husband to be as well as possible.

I think the only thing for me is mainly the fact that it did seem a bit, it seems very, I don’t know, bitty. Theres something about it which, it’s been pretty good. I mean the physiotherapist came yesterday, and she was really nice and really good and the one that came before that was really nice and really good. But theres a certain sort of hit and miss about certain things. You feel as though someone should be taking more concern about what’s actually going on with you in a way that might, you know, so when something does hit you, like it has happened over the last two weeks, you would be prepared a bit more, in a way, because obviously these things might happen, they might not, but theres such a big, the trouble with MS it’s quite a big thing. It’s not just one thing. It’s lots of different sorts of symptoms.

So it may be a bit hard, but at the same time, you feel as though there could be a bit more foresight. Not too much more foresight, but just a bit more joined- upness. I mean theres a different I mean [council name] came out to see us to fit handrails and said they would do something else and then forgot all about it. And it would be nice if someone had taken up the case to coordinate something between themselves.

When we applied for the Disability Living Allowance because weve got to get it to get the blue badge whether or not something, the communications that go between different parties would have got through initially. Because when we did it initially they sort of went on one report and not on another report and there was, you know, because Sandra, when we applied for it, we hadn’t seen a consultant for about six months. So Sandra’s condition had changed. So when they wrote back they could only say what they’d said, saw six months ago. So it’s always sort of a bit too late. Because these things are obviously changing all the time. I don’t know, but it just feels sometimes, it feels a bit ponderous and bit, a bit slow, but then that’s the National Health Service in a way.

It sounds like you need some kind of key worker who is on your case.

Yes, yes.

On every aspect of it.

Well, someone you can talk to about it, that’s not necessarily at a consultant level. So, someone slightly below that, that can make and the MS nurse is proving absolutely, shes been, come to the fore a bit more over the last year, and I know Sandra has spoken to her a bit more and that’s been very useful. So, you’re not out on a complete limb, so to speak. You do feel as though there are some people there that will know you.

And actually our GP’s been pretty good. Hes been very, you know, hes been really good, you know, he actually asks me how I am. You know, how are you coping? Even though I’ve been in about something completely different, I’ve been out about some other things, but nothing very major. Routine sort of things and hes asked me how I’ve been so our GP’s been pretty good and hes been pretty good towards Sandra as well.

Is there anything you would want to say as a kind of summary to health and social care professionals about the things you think they could do better for people with MS and for carers of people with MS?

Right. Definitely they should meet carers. Very often if you say oh you’re a carer they may have met people who are carers of somebody with Alzheimer’s or they’re blind but if they actually took the trouble to meet a carer like me and to actually ask me questions, a bit like you’re doing, you know, this is what a real carer is like, this is what we have to do. Because they don’t understand, they really don’t. If they don’t understand how can they do their job properly? They can’t. They must have training. Nobody starts a job without training but carers have to start a job but we don’t get trained, were not taught how to lift somebody out of bed and do this and do that and how to get somebody standing up and the best way to get somebody to, we have to learn this the hard way and that isn’t fair on us because it makes us stressed out and angry. It really does affect our health as well so not only have you got people with an incurable illness who are ill, you’ve got all the carers and our health is all suffering so that’s going to be even more money added to, you know, the little pot.

They should talk to carers and most of them they don’t. They just assume that you’re a carer a bit like a carer from the council. Well I’m sorry there are a lot of things that carers from the council will not do, an awful lot of things. But we have to, weve got no choice. I mean carers from the council won’t wash or launder soiled sheets and things, health & safety. If you get a carer from the council and they have to be somebody, say for instance in bed, they’ve got MS, there has to be two people to get them out of bed if they haven’t got a hoist. Excuse me. Theres me, you know, I can do it. It’s health & safety gone wrong, it really is. And the only way they’re going to understand carers is by talking to us.

I think they’ve got to learn to understand and listen to the individual with MS and the person that is caring for them to what their real needs are. It may only be small things, but those small things can make such a big difference. The bigger things, yes, they can cope with and is quite readily available. But I think they’ve got to look at the more intricate details, if you like, of what the individual with MS needs and the carer looking after that person needs to try and enable them to continue to have as near normal life as possible. Where at the moment, okay, they listen but they, it tends to give you the impression they put that to one side. The big things, yes, they’re quite happy to deal with. The smaller things, they don’t seem to want to consider it’s their duty to try and help with. But I think it would help considerably if it was a little bit more individually considered rather than a specific plan by let’s say the social service. Theres got to be a little bit more flexibility in that.

Well, I think re-, really from what I’ve said that, I think if they have a person that has any serious illness, not just MS, any serious illness, there are plenty of people with serious illnesses of varying sorts that can’t do anything, and, and the carer is there living, living in the house and looking after them, I think that they, they should take that into account and, and realise that just a phone call occasionally or even, I know they won’t do home visits, but it, I think there are times it wouldn’t hurt them to do a home visit and just say, pop in and say, Is everything all right?

Not just for the person that’s ill, who might be going to the doctor’s, I mean Bernard doesn’t, but a lot of people do go to the doctor’s, but the person that’s caring never goes to the doctor’s. And, and because they didn’t realise, realise when I was ill, nobody seemed to put two and two together that there were two of us quite ill, quite ill in the house actually. Nobody bothered to come. And two el-, I mean we were both in our 70s then, two elderly people in the house with no one bothering what was going on. And I think that ought to be looked into. I seriously think that ought to be looked in-, not just for my benefit.

I’m lucky, I’m fairly he-, as you can see, I’m fairly healthy. But there are a lot of people of 70-odd that are not as active and healthy as we are. And I, and they are left, as long as nobody moans, they’re left to get on with it. And, and I do think that’s wrong. I know theres no money, I really understand theres no money, but they can find money for all sorts of other things. They could at least scrape together at least one visit every six months.