I've lived with pain now for 25 years, so it's been a long, long haul. It's a constant battle really, physical discomfort as well as mental and emotional side effects. I think the textbook definition of chronic pain is something that lasts for over three months. I think unless somebody's lived with long-term pain it's very difficult for them to understand quite what effect it has. Hopefully this is one of the things that the two of us patient representatives involved in this project have been able to get over a bit more to people. So quite what it's like, and how other people can help you. Hopefully through this training course, that’s going to change dramatically.
If I can just go back 25 years ago, nobody knew anything about the complaint I've got. I've researched on the internet, I researched everywhere, and I was lucky to find a consultant up at Guy’s Hospital who was actually taking an interest in it, and he was one of the first people I think in the world who really investigated. In my days it was known as sudeck atrophy or regional pain syndrome, it's now called complex regional pain syndrome.
I'm hopeful now that this training is going to be a real opener for people to be able to discuss how they feel and how it's affecting them, because nobody asked me. I had no use of my left arm whatsoever, but nobody asked me: ‘how are you managing?’ Or ‘How are you coping?’ Whereas I know now that there will be somebody around that would be thinking about that right from the start, rather than just leaving people to get on with it.
It was still in very early days and the first thing he said to me was ‘It isn't all in your head you know.’ I thought ‘is he anticipating that I'm thinking this is a mental problem?’ He then went on to explain that they didn't know what happened, but it was something, possibly that happened in the brain rather than a psychological thing that was happening to me. So yes, it was the first time I had any insight into what was causing it.
I battled first time round. I battled for two years from having an absolutely useless arm and that was sort of the mental salvation I needed. I didn't want to be sitting at home worrying about it all the time and I worked for the NHS for 44 years, so I did my bit. I was a medical practice manager.
With PIC-C, people are actually interested in the person not just the pain and where it's coming from. I now feel that there are people you can turn to. The psychologists and physiotherapists particularly will have the opportunity to ask you ‘have you got any emotional problems?’ ‘Have you got are you suffering other than the pain which nobody ever did with me. I think I could have probably done with some psychological support in the beginning. Eventually I got over it and then I had a knee replacement in 2008 and the whole thing came back again. I now walk with crutches.
It's been wonderful seeing everybody in the team who are actually interested in how to assist you, how to understand the mental side of it and how it actually affects your day-to-day living so your sleep patterns and connecting with other people. Because quite often if you're feeling low you don't want to go out and do anything. So I'm really, really hopeful that this whole project is going to bring to many more people the ability to ask the questions rather than feeling embarrassed about people trying to get over or sitting there in tears or whatever and not having that confidence to actually say what is it that's really troubling you. What difference has that made to your life.
I think just having somebody there to support you. It's okay having family but family get fed up. I don't moan and groan very often and I think my family would agree with that because there is nothing they can do but actually having somebody outside the family that you can talk to and give tell them your worries. Or how it's actually affecting your life and then being able to understand that to me has been one of the biggest innovations of the modern day.
Whereas 25 years ago people didn't even think of asking ‘Is it affecting your sleep?’ ‘Or is it affecting how you communicate with others?’ These can be major problems and suddenly here we have a wonderful group of people that are learning how to do this without feeling any form of embarrassment and hopefully asking the leading questions that will bring forth answers.
Now I think people perhaps understand that it has to be a joint venture the patient has to be as involved as the clinician if you're not both trying to deal with or get to the same object. If you haven't set yourself something, then I think that this is a really important way of dealing with pain. Everybody looks at pain in a different way and I think it's very important now that they are encouraged to work to get on with life as best they can and to make most of it. I’m hopeful that with this programme, the time people have come to the end of it they will have seen how important it is to play the leading role in asking questions and getting the truth out of people as to really how they're feeling rather than a veiled picture.
Hopefully as patient representatives, we actually bring a reality to the situation. We are after all just normal everyday people, we're not clinicians we're not people involved in the medical profession so hopefully we are just people that are telling it as it is. I think sometimes that's really what somebody needs. You can sit in a classroom or somewhere where people are just firing questions at you but if it isn't a two-way conversation then I don't think it works. I hope that we will now be part of something that's bringing forth lots of questions and lots of involvement with clinicians talking jointly with you.
When I joined the project, I was a little anxious because most of the people are highly qualified in the medical field and I did wonder whether my views would be taken into account or whether we were just being put into this because it was good to have patients involved. Whereas it’s been nothing like that, everybody has been able to give their own view without feeling that we're not giving enough of a medical view, we've giving it as it is for a patient, and I can't fault them. It’s been a totally inclusive group and everybody has been first class.