Charles had just come back from the two month stay in hospital and he was still very, very ill and very helpless. Hes actually got a lot more strength in himself since then and he can sit up. Could he couldn’t even sit up unsupported when he came home and we had the nursing not the not the community nurses, but the carer, you know, the carers who come in two or three times a day to do things. And they started coming in three times a day and I could actually see some of the younger carers finding it difficult to deal with this suprapubic catheter because they hadn’t done it. It’s not something that happens to everybody, thank goodness, and so they were having problems doing it and I thought, Well, I’ll have to get to grips with it. Because it was becoming, we stopped the lunch time visits but then it was becoming really difficult because after you get the, what they call the A team coming in for two weeks after somebody is discharged from hospital. They are very superefficient and they come on the nose. They say they’re coming at six o’clock in the morning and they’re there at six o’clock in the morning. They say they’re coming at nine at night, they come at nine at night. They come, breeze in, you give them a coffee, they do their job and they leave. But then, when you get general carers who follow on and these are the ones you’re paying for, they become, they’re just normal people untrained with a love of people and but they’d, slap happy and I just thought, I have to get to grips with this. Because it just didn’t look clean enough after they’d left and I said to Charles, Well, what do you think? And he said, I’m fed up because I get up at six waiting for them and they don’t get here until eleven and then I, they turn up at four to put me to bed. He said, I don’t want them.

You tend to find that they don’t always leave things as they should do. They may only be minor things, but when you’ve had a long day and you’re a bit tired it can be a bit annoying. And you’ve got to go round and then tidy up with people. And they’ve got to remember that they’re coming into our home and respect that. 90 per cent of the time they do. But sometimes they just, little things they don’t think about, but it can make a big difference to our circumstances.

Any particular examples of that sort of little thing that can?

Well, it’s things like the, the cream. We always keep it together. It’s always in the same place so we know where it is. They may come in, they’ll put the cream on my wife where it’s needed, but then they’ll either leave it on the bed or leave it on another shelf. So it’s a situation, some of the cream is so thick, if it gets on the bedclothes or clothes you can’t get it out. And that I find frustrating. Just for a little bit of care, just putting it back where it should be. We know then that it’s going to be okay.

Sometimes one of the creams, they just leave it on the bed and it slips under the pillow. You, you move the pillow and it’s a bit of a mess. So theres that thing. Things like the hoist, they don’t always put it right. So it then either hits the wall or it gets tangled with, because there, because theres an emergency pull, or theres two emergency pulls, they get all tangled together. So if you need to use that in an emergency you can’t, because you’ve got to untwist it. So I mean they’re not big things in themselves, but they tend to mount up and can be a little bit annoying. But generally speaking they’re pretty good.

I think also as, as a carer you have to build up a support group around you, because you can’t do everything on your own. You have to accept you can’t do everything on your own. And after a time the Social Services were brought in. That was an interesting state, because from the, the Royal Air Force, from the service coming into civilian life, it’s difficult to slot in to where you are. I mean it was, I had to go around this local area to find a doctor for example which had access at those day, in those days. So I was, I just went to the little chemist up the road and said, Tell me the doctors around here. And I went round to each of them. There was only one of those five doctors that had wheelchair access. So that was the one we went to. They’ve now moved to a large, much larger organisation which is, has good access. But it, that’s the sort of thing that you sort of come across as you, as you move along.

So this support group, I, first of all I had trouble getting to the NHS. Getting Social Services interested was also a bit of a problem. Because you come into the, into the area and you go to the end of the list. Because of course they have such a large list of people it takes a long time to get, work up, work up the list. Anyway eventually we did. And I was as-, [name]-, my wife was assessed and it was decided that she needed some sort of care.

And that’s developed now so that she has morning care to get her up and to get her dressed and washed and so forth and evening care to get her into bed and showered and so f-, and so on. Because of health and safety rules, I have to be around the whole time as well. Because when shes moved by a hoist, we have a hoist supplied, that’s good, the Social Services do provide a lot of equipment, but when shes moved by hoist I have to be there because the carer is not supposed to do it on her own. So that sort of is an effect on me as a carer. I have to be there.

I found that it was getting difficult to do things in the garden. I heard of a chap who was, had become redundant and was going to set up a little gardening thing, so I said, Come and do me an hour a week. And so he does. And he still comes and he just helps doing things around the garden, which is part of the support. I wanted to sort of have a fixed time I could go and do shopping for example. So I got in touch with Crossroads. A fine organisation, you’ve probably heard of them. And they again came to assess me. And they provided a, someone who, to come just to provide me with two hours or three hours one day per week so I could guarantee going to have some time to do shopping and any other, any other little things that need to be done.

Being aircrew, I had, I’d been a pilot, and when you reach retirement age there is a, I’d already joined actually, a thing called an Air Experience Flight. You’d have the old grey guys in those days who used to go and fly the little aeroplanes, Chipmunks, Bulldogs, that sort of thing, to fly ATC cadets, CCF cadets, to give them air experience, 20 minutes’ flight. And that was an opportunity I took up down at a place called Colerne in the early days before the early days of the diagnosis. In those days I could leave her and go and do the flying and then come back again. It came to the stage when I realised I couldn’t just, I couldn’t just leave her and go off. And that required a set period of about six or seven hours. And I again approached Crossroads and said, Look, do you think you could provide someone on a Sunday morning or a Saturday morning? so I could go and do this, this flying down at Colerne. And they hummed and haahed for a bit and then they came up with a lady, a wonderful lady who said, Yes she was able, as a Crossroads employee this is, to come on a Sunday morning. And so I used to leave about 8 o’clock, shed come in about 8 o’clock, I’d leave at 8 o’clock and be back by 2 o’clock. And she would come and sit with my wife and give her lunch and that sort of thing for that period. That gave me the opportunity of going and doing the morning wave of a flying sort of a session with these cadets.

That’s what I mean by setting up a support group. You have to actually work at it. It’s not easy, you have to actually work at it. So I now have this, I don’t do the flying anymore, so that’s gone, but, but that same lady still comes in on a Thursday at 9 o’clock and stays through to 3 o’clock. She doesn’t now work for Crossroads. Shes decided to go independent, so I employ her independently. So I have to employ her so that I can now go off [laugh] and play golf. So I fix myself a, again a period each week where I can now go off and play golf. That costs money. It costs about £70 every Thursday. It’s not cheap. But it’s what you have to do. You have to do these things to make your life… So I now have a routine during the week with a support group around me who will help my situation.

I think what happened was there was just a point where I was working full-time, I was working in London, my mum was needing more and more care. I don’t remember the process we went through to get that. I remember it being there. And I remember it progressing. Then I remember it being appalling I can remember things like people were supposed to come in and cook my mum’s sort of dinner and they had to sort of sign a book to say when they had been and I would get there and it would be five o’clock and they’d say that that they’d stayed till six o’clock and they weren’t, they weren’t there. And that happened a lot.

We had people that abused the use of the phone. There was a time when my mum had a smack print on her backside and, there were times when actually she was left up all night because the care didn’t sort of arrive, so this was later on when as I say, that they started picking up more of the role. So you never feel completely relaxed. You never feel completely that it’s all going to work. You feel incredibly guilty, so you might as, you’re sitting there wondering if shes been put to bed so you may as well just drive round and put her to bed.

So I think the care was totally unreliable Upsetting actually. I think what was upsetting about it was that you do it for somebody because you really want them to get the best care and you love them and at times that meant walking away when you felt so, you know, you’re about to pick somebody off the floor who’s sobbing, who’s soiled themselves and you’re trying to sort of sort all of that out. And you have to walk away because, you know, you don’t ever want to show that frustration to them. But you have to, you walk away and you might sort of slap a wall or just cry or go out in the garden and shout and then you come back in and you do it. But you do it and you do it because you want to give the best care and that’s what they deserve and it’s your mum and, you know, that’s what you want to, that what she deserves. You know, she brought you into this world and, you know, you, you should be looking after her. And there she was as a result of me really not, not being around as much as I needed to be. She was basically with people that didn’t really want to be doing it, hadn’t really been trained were lying, were not looking out for her best care, were you know, I couldn’t trust. And you’re trusting somebody so vulnerable and so precious to a complete stranger, of, many different strangers coming in all of the time. And that’s, yeah, that’s really, really, really upsetting.

Weve had problems with care companies, and they say, Oh, we can’t do this, we can’t do that’ And my question is, Why?’ Silly little incident was my wifes arm had dropped down to one side. And we asked could they lift it up when it drops down? We got told, It’s manual handling. What??! So, what I actually did, then, was start to raise questions. What we actually ended up doing was putting in a formal complaint because we got frustrated and weren’t getting anywhere.

We went through the formal complaints procedure. It was hard work. But, when we had the independent person to come and look at the complaint, at the end of the interview [and] she said, My God you guys have been through it. A fortnight later we got a letter from the local authority saying every single count that we had raised had been upheld. We shouldn’t have to go through that. And by more and more of us getting on board and voicing it I know theres a Carers Association. They do a good job. But, they tell us with adaptations etc, everybody’s an individual. No, I’ll change that. What they tell mewith MS everybody’s an individual and everythingthat people MS affects people differently, different people in different ways. However, when you get into the bureaucracy-and it’s not the careworker, it’s not the social worker that Ithey’re tied by this bureaucracy, meeting targets etc.- what you actually get there is you’re not treated as an individual in that respect. MS affects you individually. Everybody’s different with it. Yet they try and put you into a box. And we argue, were not in a box. What’s right for you might be wrong for me. And the same goes with carers.

And so don’t be afraid. I’ve worked through frustration. Ive had to get to a point where I got so frustrated it’s come out in like, I’m making a formal complaint. I get no satisfaction in saying I want a formal complaint because when I actually got the letter through from the authority saying all had been upheld, I didn’t realise how stressed I was, I just burst into tears and I can still feel myself filling up a little bit there. Because you’ve won, but you shouldn’t have to win. It’s not about winning; it’s about getting what you’re entitled to, what the person that you’re caring for is entitled for. And don’t bottle things, talk to your close members of your family.

And I felt increasingly very controlling in as much as the carers who were in and out probably now three or four times a day, medication, wash and dress, come back give lunch, come back do tea, come back go to bed. It was this total invasion of any privacy that I might have, the whole of the downstairs of the house was fair game for them, they had total right to go anywhere they wished to go downstairs. Wed had the downstairs cloakroom changed into a wet room they’d be in and out the kitchen. I found that I had got two places to go, either upstairs or in the garden, they were the only two places and if, as they did, the carers called upstairs I would not answer them because I felt that if I was upstairs that was my right to say, you do what you have to do but it doesn’t have to involve me.

We had a massive documentation system whereby they would write down in a book, I would write down in the book, we kept in contact, I didn’t isolate myself but everything had to be written down so that we all had a record of what everybody else was thinking and doing. We had medical deliveries come in, we had people popping in and out, we had a key, one of those key safes on the door and the key would go missing, the key would be left on the inside and the next lot of carers couldn’t come in. I felt as though it was just total invasion but quite rightly so because I wasn’t giving up work, I couldn’t give up work it was my sanity saver but also the place where I could go and hide and not be here, which is an awful admission but

A while back you talked about direct payments.

Yes.

Could you talk in a bit more detail about what that is?

Yes, now that’s an interesting one as well. We were approached last, last year by one of the, the ladies from [county council], who are the, who, who, who support the, our arrangements. And they have a, had a target for, I think by March next year of 30 per cent of people being on direct payments. And they came to see me and they, there was a lot of influential talk and so forth. And I said I was not too sure about this and so forth. But eventually, I’d obviously been targeted, so, This ones a good, good one… So eventually I said, Okay, I’ll give it a go and see how it works.

And so we have a bag of money now, which is supplied every month, and we pay the expenses. At first I thought, This is daft. And indeed in a funny, in some ways it is daft. Because whereas before, the care, the agency put their invoice through to the county council and the county council then paid the invoice money to the, and I, all we did was receive the service, now of course what happens is the county council gives us money into a bank account, the agency supply an invoice to us and we then supply the money to them.

So it appears that we have, nobody has moved, done anything different in the county council, exactly the same person working there, exactly the same person working in the care agency. I’ve been introduced in the middle of it. I don’t get paid or anything like that. And they just started using me. Okay, so it is useful in that I can, if I decide to go on holiday in France I can actually get a proper invoice and, and pay the bill, so to speak, and I can get care over there. So it is helpful. Rather than going to the Social Services and saying, I’m going to France. Can I send you the bill? and that sort of stuff, I can deal with it directly.

But it is an interesting manifestation. Particularly since I know that when I go on these four weeks’ respite that I’ve told I, I go on, I have to pay a large proportion of that, you know, I have to pay. But they do pay something towards it, so it’s fair enough. But they, what they do is, they bring a care lady in, one of the carers we know about, to live in whilst I’m away. So I get someone coming in to live in. And they still have to, because of so-, health and safety they still have to provide the other lady daily as they normally would. So then the bill comes in, and I know how much I’m worth. I’m worth over £1000 a week because that’s what they pay for this person who comes in to live with me. So I know how much I’m worth. And if you work that out throughout the, that’s what a carer is worth. And I don’t get Carer’s Allowance [laugh]. Ooh, it rankles, it rankles!

Which isn’t much anyway.

That doesn’t matter. It’s the principle of the thing. It’s the, it’s just the acknowledgement that there is a, you know, there is work being done, if you like. So does that help you with the direct payments?

Yes. Is there, is there a fixed amount of money paid into that bank account which represents an equally fixed amount of outgoings?

Yes.

So theres no accounting to be done?

No, because the daily ca-, no, what I had to do, I had to set up a separate bank account. So we just use the one bank account for this partic-,

So it’s quite open and obvious. And then when I had the separate invoice from the French care agency, I just paid it. Obviously I did a, exchange into euros and so forth, but that is then accounted for as well. And there will be, in not very long, the first annual sort of cheque, so to speak. And I have the bills, I have the amount of money paying in, I have the invoices, and it’s just a reconciliation really. I mean it’s no problem to me, but I can see for other people it might be a little bit of a difficulty. But at the moment I’ve had, there was a little bit of a hiccup at the beginning, there was bound to be, which was resolved after a time, and no problem at all. But it’s just a simple transaction.

The carers that we get, they are a local company. We started off by s-, having social services. They set the procedures up, made sure it was working okay and then they passed it on to a local company, who come in. We, depending on, again depending on your finances how much you have to pay, we have to pay for all that ourselves. So we don’t get any help at all with that, until we get to a certain level, and then help will come with that. That is, unfortunately as my wife has d-, her situation has deteriorated, every time we get up to sort of the maximum that we have to pay they move the goalposts and they’re asking for more money from you as an individual. So were still having to pay fully for what we get.

Do you mind me asking how much that is?

No. We pay £112.50 a week at the present time. Now if we extend that, that works out at the moment £12.50 an hour we have to pay, and we will have to go up to a maximum of £153 before we get any help. The only help we do get, because of health and safety regulations my wife has to have two carers because of the hoisting, the second carer, we don’t have to pay for. That is, they’re provided purely on the grounds that it is the requirement of health and safety. So I think

But they come in three quarters of an hour in the morning to get my wife up, showered, dressed and then onto a chair, power chair. And then in the evening it’s just to get her ready at night, give her a quick wash and then from the power chair onto the bed, into her bed clothes and just make sure shes comfortable. And they’re here for half an hour at night. So we get an hour and a quarter a day.

Occasionally if I need to go out for an appointment or anything like that, I can request from the company extra help. Like the other month I had to have a dental appointment when my wife wasn’t required to go. Unfortunately our dentist is about 12 miles away, so I had to get somebody to come in and sit with my wife while I went out, had my treatment and came back. So again that is all having to be paid for on top of any cost you have to pay for your dental treatment. They’re quite flexible, providing they’ve got the staff. That’s the biggest problem.

Shane deteriorated really fast that he could do absolutely nothing for himself and I started thinking the house is not suitable for him, what am I going to do. I thought I’m going to ring the council and whoever picks up the phone I’m going to explain to them my situation and ask them to direct me to whoever or wherever would be appropriate.

So I rang the, I rang [council name] and I was put through to social workers, I spoke to them and then I was sent a social worker just to sort out the care he would have needed. But by then I had worked, because I was actually working and looking after him I had, I already known how many hours would be appropriate for him. When she came I told her and they said, Oh, hes got to go on a waiting list. I said, That’s impossible he cannot go on a waiting list because I’m working and I need someone to be with him during the day, feed him because he can do nothing. However, he was not placed on a waiting list. I got the care that was appropriate then.

That was fine, however I thought to myself that he needed extra care Again, I overheard in the supermarket about the Independent Living Fund and I’m thinking God is really on my side. So I thought I am going to approach this lady that I don’t know and just explain my problems to her and that was what I did. With this information I was able to get extra funding to have someone come in during the day to read to him, and if he wanted to go out they would take him out in his wheelchair and put him to bed at night and for that I was grateful.

However, by 2003 he really, really deteriorated but not to the extent that he could not get out of bed because that was the routine I set for him that he would be up at 9.00 in the morning for his carers to give him personal care, have his breakfast, be fed and whatever.

I have to do everything I do all the shopping do all the cooking, do all the laundry if you look in our kitchen you will find that there is no kettle out there because it would be dangerous for my wife to make herself a cup of tea. What weve got is a kind of urn, where you push a button on the top and hot water comes out of the spout and you pour that onto a teabag and even in my wifes state can make herself a cup of tea if she wants to. Not that she does I generally speaking make it but yes I have cleaners in keep the place tidy not often enough unfortunately but… I do all the driving yes I do everything. I’m not complaining but it’s a burden and that’s why I’m so aggravated about respite care because respite care is really, really important. My wife can get away three or four times a year or has been able to get away three or four times a year, give me a break, which means quite literally I lie in bed till 11 o’ clock in the morning sometimes which is wonderful, not worrying about what shes up to, having to go and make her breakfast and bring it in bed and getting her in the bathroom and all that stuff.

When it got to the stage that not only he wouldn’t go out, he couldn’t go out I became desperate for respite and I think if there is one issue about all of this was that I felt that peoples sympathies, attitudes were all very positive towards my husband, all very caring and helpful; but my needs were not at any stage given any voice at all. When we got to the stage of getting carers in which became a necessity helping my husband as obviously working full time I wasn’t here to help him I would ask GPs, I would ask anyone who would stand still long enough to listen, if there was some way that my husband could spend some time not here. I could go away, I could take my son away but I would actually like some time here with my husband away and that was very, very difficult to achieve. It was achieved quite bad temperedly by my husband who didn’t want to go away. His GP, who was also my GP, was caught between two stools and in fact I moved GPs as a result of it. The stress I felt got heavier and larger. We achieved perhaps one week every three months. I found it really hard.

What sort of services do you need now?

Right, what do I need now? A cure for MS would be nice! Services? I think there is supposed to be a pot of gold that every council was given to give carers respite. This pot of gold has been sitting in our council and lots of others for about a year. I know nobody in this borough, and we are a large borough, who has actually had any respite yet. The group I belong to weve actually put in a bid to run this pot of gold. But it seems to have shrunk a great deal from how much the central Government gave to how much the local council is saying is in the piggy bank. And I think this just goes on and on, more corruption, never mind.