Interview CP46

Age at interview: 49

Brief Outline: Low back pain since 1993. Pain management: In patient NHS pain management programme. Current medication: None

Background: Senior trainer NHS Expert Patient Programme; single, living with long-term partner; 3 children.

Had an MRI and was told he had degeneration in his spine and became frightened of moving which he...

Anyway, I went back to see the GP and he said 'Okay we'll send you to an orthopaedic consultant. Again that took time.  That took another three, I think about three months actually to see him and it was in the days really when they were GP fund holders so they, they tended to move you around where all the money was.  

So, where I went to see one consultant at one trust, my GP found he could get a better deal from another trust. So then I went from there to another hospital. Again I had to wait another two or three months to see him and, when I did actually see him, he advised, well he said well we'll send you for an MRI scan and my paperwork got lost and so I never had invit', well they said they sent me an invitation to have an MRI, but I never received it.  

So, the best part of seven months later I did actually get to have an MRI scan and it showed up that I'd degeneration of the discs in my lower back, it's the two lower vertebrae and one in the centre. And what they'd shown it was more or less like bone was sort of rubbing on bone really. So, okay, but the words they used, okay I guess at the time frightened me. 

They used this word 'Degeneration'.  I was thinking 'God, well I've got something degenerative I'll just be really careful what I do'.  So again I had this thinking 'Well, if I've got something degenerative I'd better not be too active in case I wear things out even more'.  And they also told me that, when they showed me this, they said 'Oh your spine's like a digestive biscuit'.  Again you know I, well I thought if I move at all I may make things worse.  But, by not moving, as I found out later on, I was actually, was making things a little bit worse because I was becoming more and more de-conditioned.

Described how you get referred to a pain management programme and the difference between pain...

How do you apply to get into a Pain Management Programme?

There's two ways. You can either be referred by your GP or you can be referred by the Consultant at the hospital, that can be an orthopaedic consultant or the pain doctor, the rheumatologist, or neurologist, the people that do the neuro, or the neurosurgeon, but you have to be referred by either one of those and the Pain Management Programmes are up and down the country.  

Now, there's two, a lot of GPs they get mixed up, they think a pain clinic and a Pain Management Programme are the same thing. A pain clinic is where they'll give you medication, injections, all sorts of you know interventions I suppose. Whereas a Pain Management Programme won't give you that, any medication. Their main primary purpose is to help you take more control of your pain. They accept the fact, they're not saying they're disbelieving you, but on the Pain Management Programme there'll be a pain doctor, an anaesthetist who specialises in pain management, clinical psychologist and a physiotherapist.  

They're the three main criteria for running a pain management... to call your self a Pain Management Programme. And it's not, when you say... when I say to people there's a clinical psychologist they immediately think 'I ain't mad' but it, that's not like that. Because pain has a psychological effect on you as well, like your thoughts and feelings, you need someone like that, with that professionalism to actually take you through that, to say 'Well hang on a minute, perhaps you need to change your thoughts here a bit'. So, but a lot of GPs, I was at a pain meeting the other night and a lot of GPs in the audience didn't understand the word pain management. They all thought a pain management was a pain clinic.  

So, yeah even the health', some healthcare professionals get it wrong as well. But to be referred onto a programme, you need to be referred by your GP, the pain consultant, rheumatologist, an orthopaedic consultant or surgeon or the neurosurgeon, a healthcare professional. Physiotherapy can't do it, or occupational therapy, it's got to be someone like a doctor type bod.  

Explains how to work out a baseline of how long you can do something for before the pain increases.

Now, how to set a baseline is probably the point where you all start from. In other words, how long, you need to find out first, how long you can sit for, how long you can stand for, how long you can walk for. And let's say, for example, right you say 'Well I can sit here for twenty minutes and then the pain will increase' right? So, the sensible thing about it is to get up and move around before the pain increases. So, to enable you to do that, you need to shave off 20% of twenty minutes, which is three minutes, I think.  

That is your new baseline so that, I don't know, I'm not a mathematician, let's say it's twenty minutes your baseline and it's 10% off of that is three minutes, so you'll get up and walk around at seventeen minutes. It's as simple as that. So in other words, what you're doing is you're managing your pain, rather than the pain managing you.  

What we tend to do, people with pain, is when the pain increases we'll get up, or if we're walking along, when the pain increases or starts then we'll stop. So we'll use the pain as a measurement of when to stop, stand, sit. So setting your baselines, find out how long you can sit for, stand and walk, whatever that time is shave 20% off of that and that is your new baseline. Now when you start to stretch and exercise, you can increase your baselines by, if you want to, do it really gradually, do it a minute a week, do it a minute a day. You're in charge. 

Explains that part of achieving a goal is problem solving which can involve asking others how...

So goal setting is increasing things, you know, how can I increase things? But you've got to do it in a gradual way. Thinking about, not only just thinking how you're going to increase your stretching and exercising, increasing your baselines, just think about looking at ways on how you're going to return to work through your problem solving.  

Okay the problem solving method is this, is that 'Okay, what's your problem?'  'I want to go to the movies'. Right that's my problem. Right, lets sit down and list some ideas on ways on how I can go about getting myself to go and see a movie. 

Once you've got a list, chose one of those what, right this is the best way. Okay, I want to go to the movies okay, when I book up I want to book up the rear seat, so I can get up to stand at the back. Like a lot of people think they don't go to the movies because they, they've got to stand up every once in a while. Where if you book a seat right at the back, used to go when you was a courting couple, you can get up and stand. Because everybody's watching the screen, but you're right at the back. So that's one of the ideas.  

It might be perhaps go when there aren't so many people in the cinema. So, set yourself, give yourself a list, then chose one from that list, assess the results, try it out, go and see a movie, perhaps a short movie, sit at the back and you can stand up if you want to, so then assess the results.  'Did that work for me?'  If it didn't, then cross one of, another one out of your list and then assess the results from that. 

Another part of the pr', formula is, ask other people 'Eh, you know, you've been, you've got back problem, how do you, do you go and see the movies?  How do you go about it?'  You know, so you're asking others.

I think the most important one is the end one of the formula is accept that the problem may not be solvable now because of, you're not fit, it maybe that you may not be able to go and see a movie just yet, but you may be able to when you get fitter, you might be able to go and see them in a month or so's time. So it's like problem solving. We all get problems in life, but we've got to look at ways, we've got to move forward as well. 

Still panics for a moment when he gets a flare-up but now knows to manage it using ice packs,...

Okay flare-ups, we're all going to get them. Is it realistic that people with pain, whether you've been on a super-dooper Pain Management Programme, or a super-dooper self-management programme, you're never going to get a flare-up ever again in your life? No, false, incorrect.  

We are over-achievers, we will overdo things and we will get flare-ups and it's how, part of self-managing part of pain management, is how you deal with that flare-up. Most people, when they go to flare-up stage, the first thing they do is panic.  'Oh my God, what've I done now?'  But the first, you try, what you have to do is stay relaxed, but you need a plan, you need a flare-up plan. 

When I get a flare-up, right, I am going to be dead honest there with you. Do I panic?  For a split second yes, I do. I go 'Oh, what've I done?' Then I have to talk to myself and say 'Well hang on a minute here son, it's, okay you've done something 'ere, it ain't quite right, right, easy does it, easy does it, relax'.  What I do, personally, is I put ice on my pack, wrap it round, I've got little gel packs, wrap around in a tea towel, then put them on me back, lay on the floor with me knees bent and just lay there for five or ten minutes, just to snap, you know deal with the inflammation, get the inflammation down. 

What I do though, is I do some stretching, carry on stretching. I reduce exercises by about half. So let's say I'm doing strengthening exercises, I'm up, I do, say I might do twenty, I'll probably reduce it by ten, but then I'll increase it one a day after the flare-up's starting to ease off.  

Flare-ups normally, for me, oh it is, I know it sounds like I'm being big headed again, but my flare-ups only last for about an hour or so and then they go, you know I just, I just get on with things.  The reason why they're so quick now is because I'm fitter. They say that the fitter you are, the less time you'll need to recover, the less fit you are, the chances are your flare-up will stay on for longer, it may last for a few days.

Says he is one of the lucky ones because he went on a pain management programme instead of having...

Yeah, has surgery ever been an option? That's an interesting question. I was prob... I think I was one of the lucky ones actually because, when I was running the support group, a hell of a lot of people use to come to us, to the support group who had had operations and I think if I hadn't have heard their stories I may have gone down their route as well because, when you go and see the healthcare professional, you put everything in their way, you know, you give your body to them.  

It's like 'Well here's my body' you know 'Well do I need an opera..., well all right, okay, I'll have an operation'.  And the horror stories that I was hearing, I thought 'I'm not having an operation ain't, is not an option.'  And, when I heard the lady from the Pain Management Programme talk about ways and how I can manage better, no curing me, but how I could cope better, I thought 'I want to give that a whirl first'.  

So I think, if anybody's thinking about having an operation, go to a Pain Management Programme first, or a self management programme, learn some skills on how you can manage yourself first. It may be that you may not need an operation. They always say, a lot of healthcare professionals in the pain clinics, they say to me 'Tell your people you see to stay away from the knife' 'cos all the pain clinics, that's all they see, people with failed back surgeries and bits and bobs like that, so stay away from the knife.  

And, at the end of the day, what's the worse case scenario is, is that you attend the Pain Management Programme or a self-management programme, it didn't quite work for you, perhaps you may not have got the message and you do have a back operation, but look at it this way that you have the self-management skills to help yourself after the operation, like the pacing bit, relaxation, things like that. But they all say 'Stay away from the knife'.  As I say, I was one of the lucky ones.  

Explained that it easy to get trapped in the NHS system and feels that acceptance is the key to...

But I think the most, I suppose the biggest thing for me was in actually accepting the fact that I am going to have this pain, or this back problem, for the rest of my life and I think acceptance is the key to living with a pain problem. If you don't accept it, boy oh boy you're going to have big, you know, you're going to be like, be in that NHS roundabout and go round and round and round and life will be the hamster in a wheel, you sort of, you know and you ain't going to get anywhere.  

Acceptance is the key, right, it's the fact that I've got to accept, the fact that I've got a bald head, I've got to live with it. I've got to accept the fact that [name] got to, I have got a long-term back problem and, providing that I stretch and exercise daily, I pace myself, I self manage my problems, my back pain, to the best of my ability, I seem to have a really good quality of life.

Says pain and fatigue go hand in glove but feels that it is better not sleep during the day.

You mentioned earlier about fatigue and pain is that an issue?

Yeah, I think pain and fatigue, they go hand in glove. It's very common, people with pain, we get very tired, 'cos see even when we're asleep, you know, it doesn't mean to say that we're not in pain, we're just unaware of the pain and like me in the morning, I get up at half five anyway, but I'm normally awake earlier than that anyway because my back sort of, it becomes tight and stiff and it sort of wakes me up and says 'Time to move now [name]'.  

So, even if I wasn't working I'd be still, I always wake up early anyway. But that means that I get up, do my stuff, go to work, come home, but the thing is I get very tired as well, you know. Like most people probably get up at six, seven o'clock, go to work and come home and that's it and they might want to go out. 

But pain does make you feel very tired, it makes, does give you a lot of fatigue and the one thing you try and avoid doing, in the early days what I used to do is have a nap in the afternoon. No, you can't do that. When you have a nap in the afternoon, it disrupts your sleep pattern so it's like a viscous circle.  

You... 'cos you have that nap in the afternoon, it disrupts your sleep pattern and you don't want to sleep at night. So, even if you are tired in the afternoon, try and do something, keep yourself awake, keep active then, when you do go to bed at night, you, you try and get a fuller night's sleep. Sometimes as lot of people think 'Oh, I haven't got, I don't get me eight hours sleep' well, they tell me, a lot of people don't need eight hours sleep anyway.  

Explains that making love takes planning and that good communication is important.

I always, yeah, this is one I did an interview years ago with... on radio, this one came up, it's sort of sex and pain, how does it work out?  And, I don't if you've ever seen that the thing I'd put on a t-shirt 'Pain sufferers do it gently'. And I don't think really pain it is a problem, sex when you, to have sex, or have an intimate relationship when you've got pain, it's just like anything, you're thinking 'How the hell can I do this?'  

But it's like anything, if you do some stretching, seems a bit unromantic, but you've got to think it through. We just have to do things a little bit different than I suppose the normal bods. Where normal bods, they're just sort of thinking, get a bit hot and sweaty and think 'Hey come on baby, lets go', you know. Whereas we have to say, we have to think about, think it through first, well, you know do a bit of stretching, you know before you get into that sort of stuff and I think it might seem a bit unromantic, we'll do some stretching afterwards as well.  

It's part of self-management, you know, it's, you know it's like getting into the bath really. You take your clothes off, you get in the bath, you get out, you dry yourself and you put, it's the same thing, you know, you're preparing yourself to get into a bath.  If you're going to have some sex, not some sex, you're going to do, making love things like that, you've got to prepare yourself before and after. But you just work out different positions on how you're going to do it and I think the best thing really is to, is to talk it through with your partner and it's no good saying 'Look, this is what I can do, these are the things I find difficult' but say 'Look, you know, can we try things a different way'.  

I don't swing from the chandeliers like I used to, I don't jump off the wardrobe like I used to. But you just find, I don't know make it a little bit humorous, never did swing from the chandeliers either. But you just find, you just talk it through with your partner I think, if you've got a good relationship with your partner, you just talk it through, say look 'If we do this, then how's that?'  And then talk and you know, sounds really unromantic, bit clinical, but have a bit of a debrief afterwards and say 'Look, was that okay?'  It's no good doing something with your partner if they don't find it, it pleasing. 

At the end of the day, you know, say am I having sex or am I making love? I like to think that we're making love, you know, and making love is thinking of your partner, you know, in my case my partner has pain as well, so we have to be, we just talk it through and are very honest with each other like, you know.

Found that voluntary work gave him new skills and was a steppingstone back into paid employment.

How did you make that transition from being on benefits to getting back to work?

Yeah, I think for a lot of people with ... who are not working with pain, that is a frightening experience, but it doesn't have to be and I didn't know how much help there is out there for people with a physical problem or a pain problem in getting back to work and I was really, I was surprised how much there was. 

When I decided to get back to work, I was, I suppose I was... what prepared me to get back to work was being active within the support group and I was, as I say, I was running these self-management programmes. So, yes I was still receiving benefit, but I was doing these self-management programmes on a voluntary basis so it was keeping mind active, I was learning skills, like IT skills, presentation skills and things like that. 

We were lucky, the back pain organisation that I belong to, they applied for some funding from the government and they was given some money to develop the Think Back project, or Think Back self-management programme. So I actually went from, I come out of the system and actually went and worked for those for about a year and a bit.

When he went back to work he contacted his Disability Employment Adviser and was assessed for...

Now what help do I get? I got quite a bit. I contacted my local Disability Employment Advisor, which they, they're all connected to each Job Centre, I think it's now called the Department of Works and Pensions now actually, and I said to them 'Look, I'm going back to work, is there any help that you can give me?' 

And I think if you do that within the first six weeks, there is tons of help and the help I got with, was with equipment and what they did was they sent someone along to assess me, what, what actual needs I want, I had to have. One was getting around travel wise, the other one was with the equipment, like office equipment.

So they bought me a chair, I had a specially designed desk, my height, all bits and bobs I needed to for me to work at a computer, it was brilliant and, what they said to me was that if within the first year this job don't suit you, or your condition worsens, you can come back into the benefits systems and you don't have to start off at the bottom of the ladder, you go back at where you finished.  

And I thought, that's really good, that put my mind at ease 'cos I thought, you know what it's like, you're thinking 'Right, okay I'm well now' but the fear is 'But what happens if this job don't suit me' 'cos in most jobs you're expected to work, you know, thirty odd, thirty five hours, forty hours a week and you're thinking 'Well hang on a minute, I'm doing nothing and now I've got to go to thirty five hours' that can be too much and it's frightening, you know. 

I always say to people, try and do a bit of voluntary work first so that it gives you, you know be a responsibility getting in and out the house and increase that say two or three days a week then, perhaps, do a part-time job, so you build up your confidence as you go along.