Archive for March, 2011
Arleene’s Story
March 15th, 2011 | 
Author: ZD YouTube FLV Player
Transcript
| This is life today if you have an impairment or a long-term condition. This is not a biased view, it is a view based on interviews with people who have developed, and are living with, impairments. Findings suggest that medical professionals must, first and foremost, listen to the patients. Patients are the experts in their own condition. It is frustrating for those living with chronic conditions, to constantly have to tell and retell their story to professional after professional. Good communication is vital to good service delivery. It is essential that medical professionals have disability equality training. The social model of disability has been around for decades. The model is based on the principle that attitudinal and physical barriers are the disabling factor, for people with impairments. I would go further. I would assert that the disabling factor is the treatment that I and others with impairments have experienced. It is estimated that 90% of people who experience a physical impairment will develop depression. This has traditionally been noted as a consequence of the impairment. My research suggests that it is not the physical impairment which causes the depression, but the treatment people receive. I recently interviewed a young girl. Half way through she said she constantly had suicidal and homicidal thoughts. I was shocked when she told me that she had not told her doctor or therapist, because she feared her daughter would be taken away from her. She opened up to me because I was listening to her and she felt safe. I called the mental health crisis team. She got help. She was not depressed because of her physical condition, but because she had not been given information about support services. Her only support came from an eighteen year old boy she had met on the internet. Her doctor had prescribed anti-depressant after anti-depressant. These had side-effects, one of these being that the tablets could induce suicidal and homicidal thoughts. Another person I interviewed had complained that she had terrible pain in her neck. She constantly visited her doctor. He sent her for physiotherapy, and in the referral had noted that he regarded her pain as being psychosomatic. The physiotherapist said that her pain was similar that of people in the First World War who imagined they were in pain, so they had pain. Her pain worsened and she sought private treatment. An x-ray revealed a tumour in her spine, which had caused a fracture in her neck. She was immediately hospitalized, and operated on. She was told she could have been paralysed. She now lives with limited mobility and constant pain. Living with chronic lung disease is a constant battle, a battle with infection after infection. People with mucus producing lung conditions often need postural drainage and percussion. It used to be the case that domiciliary physiotherapists would assist patients to keep their lungs clear. This reduced infections and hospital admissions. This service was withdrawn, and now people who have conditions such as brochiecstasis have to clear their own chests. It is impossible for people who live alone to do this. They have more infections and their quality of life is diminished. Strategies for the management of long-term conditions must be proactive. They must prevent conditions worsening. Medical staff must not be frightened by patients who know about the management of their own conditions. Information is power. Service delivery should be flexible and people centred. It must also enhance people’s life chances. Take the opportunity to learn from those living with chronic conditions. Remember, one in four people can expect to develop a chronic condition or impairment. I was once a you, and you could become a me. Treat people with dignity and respect. We are all unique and this uniqueness should be celebrated. We are not brave, courageous or tragic, we are just people. Living with a long term condition is difficult enough, without having to battle a system which has not geared itself to the true needs of people with impairments. Before you see anyone, do your own A B C check. Check your Attitude- your attitude towards the ‘person’ must not have a negative impact on them, or the way others will see them.‘Labels’ are for jars, not people. Check your Beliefs-are they stereotypical, or are they in line with social model principles? Focus on the ‘ability’ in disability, not the ‘dis’. Check your Commitment to improving their life chances. Now is your chance to change things. Game Over. |
Posted in Disability, Healthcare Professionals, Long-term conditions, Medication | 
Tags: chronic condition, communication, depression, doctor, physiotherapy, therapist | 
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Mary’s Story
ZD YouTube FLV Player
Transcript
| At the moment I am a very, very unhappy lady. I’m unhappy because I cannot see. I cannot hear. After a very active life, and a life whereby I lived very healthily – I lived… I was a very, very keen golfer. Did all my exercises. Ate the correct foods and hoped for a very health old age. Unfortunately, since I have age related ___ degeneration, all my hopes have gone to the… Gone. And I’m very… I feel that my life is only an existence now. Due entirely to ___ degeneration. And the fact that we do not appear to be making any progress as far as, err, treatment for ___. (Pause) Until I was… It’s now… (Pause) About what? 19… 1998. When I first had trouble with my eyes and very rapidly they deteriorated because of ___ degeneration and now I am completely blind. I can’t tell the difference between light and day. But after living a very active life and a very, um, active professional life, to come into this sort of life where one cannot see, one cannot hear… And where society gives you very little attention. I get a same load of rubbish through my postal service as everybody else. And even when the writes to give me a 6 monthly, um… (Pause) A six monthly, er, consultation, they send it on paper. On a little… Tiny print. And I cannot read it. I have nobody – all my family are dead. I really did feel that I was saving up for the pension, etc. for a good old age and I find that my old age – because of ___ degeneration – is nothing but an existence. I do have carers come in. And I must say that the carers try – most of them try – but… (Pause) It’s… It’s a very, very poor service. Through Social Services. I have a carer comes in in the morning. And to be dressed like a baby is an insult. My brain, because of… I have a pretty good, active brain and I can lay claim to that. And I feel that my brain, now, because of lack of use… You know, the old adage – if you don’t use it you lose it. And my skills have gone. I cannot prepare a meal. I cannot even pour into a cup. My hands are so arthritic, I can’t do anything. And this, I’m quite sure, is because I have not used them. You know? I’ve lost the skills. And I sit for hour and hours and hours, entirely on my own. My brain – which was good, excellent (pause) is deteriorating. My memory is deteriorating, merely because I can’t put more facts into it. I am totally depend… I can’t see television like anybody else and I spend long, long, lonely hours by myself. With nobody to talk to. Even my voice is being affected for lack of use. (Pause) And I… There was, I believe that in the North East – with the two universities – Durham University ___ department, Newcastle University of ___ department, they got together calling themselves “North East Care”. Especially looking into, urm, (pause) as to what they could do for older… ___ troubles and older people. And I haven’t from them for a long time. You know, this is what’s happened. We appear to be put into a category where, “You can’t do anything for that.” You know, “Just keep them alive as long as they live.” And that’s exactly how I feel about it now. And I feel very, very distressed. A – I think Social Services don’t look after older people. I have not seen a Social Workers… A Social Worker for months now. Nobody bothers to see how you’re getting on or anything else. I find it difficult to use the telephone. (Pause) Because my hearing is now affected. If I can’t absorb things it would appear that the hearing becomes affected. And I’ve nobody to talk to. The voice is being affected. Instead of having a strong voice as I used to be – I was Chairman, urm, of the… The Speaker’s Club. The Newcastle Speaker’s Club. At the University. I was, um, (pause) president there for a long time. And believe me, to think that I could address a public meeting at one time – and now I look at myself, a wreck. And a wreck entirely due, in my opinion, to age related, neglected ___ degeneration. Neglected by Social Service, neglected by research. And if anything can be done at all… (Pause) If there’s anything going on, please let the patient know so at least they might get a bit of heart. If not for themselves, at least that it’s not going to be an ongoing trouble for younger people coming up. It really is a serious situation. (Pause) What else can I say? I’m very active… I’m still active in meetings. I am a member of the committee of the Elder’s Council. And I am on the committee on the, erm, Quality of Life in Newcastle. The Council has helped us as far as money is concerned. And I do attend the meetings. They do send a taxi down for me to attend the meetings. And I, all the time, I talk particularly about the older people in Newcastle who are on their own, living alone and are very, very… (Pause) What can we say? It’s just an existence, really. And they are neglected. There’s no two ways about it. We are not getting the attention that we need. There was, at one time, as far as Newcastle’s concerned… (Pause) Erm… (Pause) Erm… A girl used to come from the West End and took me out once or twice. And then she said that she couldn’t come back and that was the end of it. Nobody bothers whether you’re out or in, as long as you’re still alive. And that’s all. I do have this Care Call thing for round my neck. And if I fall down – which I have done several times – press this. Kept into hospital for a while, sent home again, and the existence just goes on… And I am – I really feel that I don’t live because I was, as I said, I lived a very active life. I had a very good, professional position in charge of schools. (Pause) And everything was snatched away from me as soon as the ___ degeneration developed. And it’s a very, very sad situation. I do plead that people who get ___ get more attention because I feel that we all feel we are very much neglected. We are not… We’re just… (Pause) Er… We’re… Let me point out as an example, when I go to these meetings I can’t hear. And people talk very quickly nowadays. And use a lot of initials when they address… Talking about various societies. I don’t know what they are. I’m left… Really left stranded. Only when, er, blind people with ___ are, er, acknowledged. Or talked about, then I come in and demand – as I’m trying to do now – demand that something is done to try and find, to help these people. (Pause) I cannot make a positive suggestion because, of course, this is not my line of profession, but it would be wonderful if more time was spent. If Social Services gave a little more attention to the seriousness of blind people. The trouble is, of course, if you have ___ degeneration, it isn’t obvious and it isn’t a quick killer. I think about things like cancer of the lungs, where people have… 70% of the people who get cancer of the lungs are heavy smokers. They have at least contributed to their illness. But to get ___ degeneration, it’s just because you’ve got older. And surely to goodness sake we’re not now going to be punished because we get old. (Pause) I Could I ask you to reflect on how you manage your daily life on your own? R Yes, right (simultaneously). (Pause) As far as every day is concerned – everyday living – I do have a carer who comes in on the mornings at about 9:00 or 9:30. And she’s with me for an hour while I have a shower and she makes breakfast. She looks at my clothes and sees that they’re not spotted or stained in any way. And then, (pause) erm, (pause) if they are she washes them once a week. It is a very, very poor service in so much as you don’t have a regular carer. And one person could come one day and she can, er, do just what she can fit in in that hour and a half. And then that is the end of it. She does not, erm, (pause) do any of it. Somebody else might come tomorrow and not know exactly what’s to be done. If Social Workers could have a regular carer… Who could be a regular carer, it would improve that service enormously. I do have somebody who comes back again at tea time and warms up a cooked meal. You know, one of these frozen meals that you put in the microwave. And I do believe, also, that erm, (pause) that they are not very healthy meals. They are not very good meals. But we just have to, you know, put up with them. Some of them are very poor indeed. What else can I say about my daily living except that I sit for hours and hours on my own? Erm, the doctor comes and sees me once in 3 weeks. (Pause) But I sit for hours… The only treasure that I have in my life is my little **** cat. And in fact, I’m, I’m a bit obsessed with my cat. He is my pet. And I would have liked to emphasise that fact that when disabled old people living on their own could have a pet… It’s a great solace for them. And I don’t think anybody bothers very much about helping out the… Looking after the pet. I think I would like something a little bit… A little attention paid to the pets. |
Posted in Carer, Disability, Healthcare Professionals, Long-term conditions, Social Services |
Tags: arthritis, blind, communication, deaf, doctor, immacular degeneration, social worker |
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Mr Q’s Story
ZD YouTube FLV Player
Transcript
|
I think I can go back to the 70s. Er, for no apparent reason to me my, er, heart would start beating very rapidly. Em, a bit uncomfortable. But usually… At that time I was in Australia working and, er, I used to… Could go to the doctor, would ring the hospital. And I would get down to the hospital and they would stick a needle in my arm, put me up in a bed and so long as… The needle seemed to settle things down and… Or whatever was in it. Then next morning I would get discharged and back off to work. This happened ooh for about 10, 15 years it went on. And, er, I had particular pills but, as I say, I can be daft as a brush. It never bothered me. And the answer was simple – hospital, needle, out again the next day. However, until I cam back here for a final holiday before we settled – I was 60 – and we came back and, er, we’d been back about 9 months and I ended up in hospital with this rapid heat beat. And the chappy who looked after me there said that they could sort me out, but, er… But, he said, It’ll take a time. Might take a year, might take 2 years. But he said, We’ve got plenty of pills that will keep you settled. So I think the second lot of pills he put me on seemed to settle me down and I had no problems. I was going back to hospital quite regularly. And he said, “Right, okay. You’re right now. You’ll be on those.” Which was, er, called amiodolone. Now, all very well. That went very well unit about 19… (Pause) About 2001 – somewhere around about there. Er, my doctor thought it was time I saw a specialist again, because it had been a long time. So anyway, he sent me there. And this chappy I saw here said, “How long has it been since you’ve been on those amiodolone?” And I think we worked it out at about 23 years. “Oh, good heavens,” he said. “Far too long.” He said, “We found there are side effects with it.” Er, he didn’t tell me anymore, so I assume I didn’t have any of the side effects. He said, “I think we better wean you off those.” So he slowly got me off. And gave me something else, which didn’t work. And then I started my period of a couple of, two and a half years, in and out of hospital. And the last time I went into hospital, maybe they got sick of seeing me, because somebody from… A lady from another hospital came over, who said she was going to do a (pause) Ablation therapy. Ablation therapy, that was the word. Which, er, for me was very simple. I knew nothing about it, but she told me she would go up from my groin, up into my heart. And what they discovered – I head three or four short circuits, as she put them, in my heart. And, er, she said, “With this, I’ll put two wires up until we get to your… The right part of your heart. And when we find it, we’ll short the wires together and it’ll clear the short circuit.” And, er, (pause) and touching wood that was about 3 years ago and certainly I’m on… I don’t know that I’m on any pills. All I’m on pills for now, I think, is virtually to keep my blood flowing and keep it thin. And, er, I’ve got… I’ve got something for angina. And in the meantime I also had a pacemaker fitted. Or before I had the ablation therapy, er, they put the pacemaker in, which was to, er, stop… Keep my heart beating, apparently. I’d fallen a few times and one time I took quite a bit of skin off y arm as I fell down, slid down a rough wall. And then after that they put the pacemaker in. But I was told it was an unusual one – it had two wires in. But goodness knows. It worked and that was all that bothered me. So, er, I got well looked after, I think. Certainly at the…. And as I say, today, I still see… Haven’t had any problems because with the pacemaker I check every so often. And, er, apparently with it they can tell the… What’s happened in the previous 9 months, or 12 months – however it was. It sounds amazing. Medical science is an amazing thing today. Long ago since I first went in to hospital in 1937. It just shows you how, er, things have improved. It was just a cartilage – I used to play rugby for Gosforth and, er, it was a cartilage operation I had and, I think, 6 weeks I was in hospital. And about 4 weeks doing physiotherapy. Today you can, I believe you can… You’re in… You can have it one day and discharge the next day and two tiny little holes. I’ve got a scar about 4 inches long. It’s just… It’s just amazing. And it’s fantastic that I’ve got this pacemaker, which if it slows down too much it gets a kick. And, er, I had another lady saw me… About the middle of last year, because I was over 85. She wanted to know a little bit of my history. What we ate and this sort of thing. And, er, she, er… She did an ECG but, er, she was more inclined to explain it to me. A lot of it went over my head, but there was an obvious, little dark dot in there. And when I said, “What was that?” “Oh,” she said. “That’s your pacemaker kicking in, just to keep your heart steady.” (Laughs) Which was… But without modern technology I’m sure 20, 30 years ago I would probably have been not sitting here talking to you, I’m sure. But it’s… I’m very grateful anyway. I must be… At the proper… I’ve enjoyed it, to an extent. Especially when I used to go in the second… Another time and they would see me. I would get a lot of cheeky remarks from the nurses. Which always made it… Joking remarks, you know? Which… You could have… In spite of not feeling the best you couldn’t help but smile or laugh and, er… That’s about my little story I think. I Okay. And when you went in to have the pacemaker fitted did you have a…? What was that experience like? Being in a hospital at that time? R It was quite good. There was no problem. You went in… I went in in the afternoon and, er, settled in bed. Went down… No, I went in the morning. Went down in the afternoon – about 2. And (pause) I could see the monitor. Unfortunately somebody got their head in the way (laughs) – I didn’t see it all being done. But, er, maybe it was just as well. But the funny part… The… There was no problem with it. I didn’t feel anything at all. But the hard part, to me, was lying still for 12 hours afterwards. I’ve got arthritis of the back as well as my hands and wrists now. And, er, it was agony trying to lie there, still. And I find… I found when it was over and the nurse came round – “Right, Mr Duncan, you can wriggle about if you want to.” (Laughs) And… Because I’d been on that warfarin medicine which precludes painkillers. And, er, he gave me something that he said would be alright, but it was only after the time was up. He said, “That will get you settled a bit quicker.” But that was the hardest part about it – was my back. But then I got told off then by him. He said, “You have told us when you came in yesterday you had arthritis. And we would have sorted things out for you.” So obviously there was other ways of making you more comfortable afterwards. So that’s what I get with keeping my mouth shut”. |
Posted in Healthcare Professionals, Hospital, Long-term conditions, Medication |
Tags: angina, arthritis, communication, nurses, pacemaker, side-effects |
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Mrs R Story
ZD YouTube FLV Player
Transcript
| Yeah, mine s not a very happy story. I’ve been in hospital, I’ve had some dreadful experience and the only kindness I’ve had was from individual nurses or medical staff. Because they are the ones that you are involved with mostly. Er… I fin that (pause) they’re influenced by their senior staff and if their senior staff aren’t caring they become uncaring. (Pause) Er… I think junior medical staff are all the same. They do two years, they feel they know everything and they too become… (Pause) The patient is the last person on their agenda. If they can please their consultant, they’re happy. That’s not true of all of them. You do find occasional ones who do care. But it’s very, very rare. It really is. (Pause) I found that… In a bay with patients – really old ladies – in one bay an old lady left with a coat over her for 24 hours because they didn’t have any blankets. Another old lady not given a drink, unless her relatives were around her and then she was absolutely (pause) overcome with attention from the senior nursing staff. (Pause) And just a smile in the morning from, uh (pause), student nurses or long housemen… (Pause) very, very few of them have the, um… (Pause) They just don’t give you a good morning or a smile or… And some of them don’t even look clean. (Pause) I don’t know how I can get through to some young girls as to (pause) even look clean first thing in the morning and not smell of last night’s lager and pizza and talk about last night’s episode with the boyfriend or the kids or (pause) talking over the bed. (Pause) (Chuckles) I’m afraid it’s not sounding very… (Pause) It’s… (Pause) I Would you be able to tell us what took you into hospital on this occasion and how long you were in? R Well, I was in the first time for, er, a week. (Pause) That was in March. The second time in for two weeks. But there was the very first week… (Pause) I went to the shops, which are 5 minutes away (pause) and I just couldn’t get to the shops. I’d been ill for about a fortnight with a heavy cold. Just (pause) couldn’t get, which… You know, you’ve seen how far those shops are away. But I needed milk and I needed toilet rolls. You know, which… (Pause) Are just normal commodities. I had to find a (pause) social worker myself once I got in there to help me with these things. And, er, I had to find a physiotherapist myself. You know, because I didn’t know whether I could walk up and down the stairs because I was absolutely breathless and I was going to be discharged and… (Pause) But I had to do that myself… (Simultaneously) I did ask… I (Simultaneously) While you were in hospital? R Yeah. I did ask nursing staff, nothing was done. And I did say, you know, “Which one is a physiotherapist…?” Well I knew by their uniform. And then which one was a… (Pause) Erm… (Pause) A social worker – you know – to do… (Pause) To get some… (Pause) Shopping. But that was what first got me into the ward that was absolutely, and completely, disgusting. Old ladies left without a drink. Too much sitting around the Nurse’s Station. But all stemming from the senior nursing staff. If they’d… (Pause) Another thing for young girls – be the first out of the Nurse’s Station. Don’t sit there as long as everyone else does. You know, it’s not… (Pause) It’s nothing for you to be up first on your feet and get to see to the patients instead of sitting gossiping around, em, nursing stations – which they do. I think you see that… You see that on film. On here, if there’s anything you see a crowd of nurses around the station and… (Pause) You know, try and (pause) be the first out to help. Or try and… (Pause) I thanked one support worker for giving an old lady a drink (pause) and she said, “That’s my job.” The next minute I was moved from that bay because I was obviously being sarcastic because we were feed… We were giving the old lady drinks. (Pause) I was moved straight away from that bay to another bay and my bed was moved in, my sheets were on the ground and they were in urine. You know, you could smell it and you could see it and two nurses said, “It’s not urine, it’s just water.” But it was… (Pause) And then a third nurse came and said, “Yes, there’s been a catheter bag burst down here”, you know? “Her sheets are lying in urine.” But it… (Pause) I felt you had to fight (pause) all the way. The only way you got any attention was if you had massive amounts of relatives beside your bed, day and night. Then you were given every attention. As soon as those relatives disappeared, the patients were just left. (Pause) This is a hospital in Newcastle (pause) and just happening last year. It was the most dreadful experience of hospital life. I Did you make a complaint? R I complained orally to a consultant. It was a medical ward so they… (Pause) It was all just passed off. It was, you know… (Pause) Previously I would have complained (pause) and written but I really hadn’t the… I hadn’t the incentive or the energy to do it. I had no energy whatsoever. I’d already made a complaint about another hospital within in the region the previous year. I got to the stage of all the writing of letters – which I had to do by hand, I don’t have a computer – and… (Pause) In the end, the person I was complaining about – which was a ward sister – was counselled and I was left with the dregs of all of this here. Of writing, visiting the ward… Visiting the hospital and… I just thought, “What’s the use?” If I’d wanted to take it further to any of these other agencies I would have had to handwrite again, letters, and by then I was really feeling so dreadful that (pause) I didn’t do it. So… (Pause) I think leaving things – unless you have a strong (pause) support, er… (Pause) Er… (Pause) Well, unless you do have strong support from friends and family, (pause) I don’t think… I feel very sorry for any patient. I really do. Because you have to fight all the way. There may be exceptions, but I certainly didn’t find any. I find the senior nursing staff don’t even have the courtesy to say, “Good morning.” Even if you aren’t their patient, they are in overall charge of the ward. (Pause) But you don’t… I walked past a ward sister – the senior ward sister – she said, “Where are you going?” I said, “I’m going to make a phone call in the Day Room” – the patient’s Day Room. She said, “The nurses are having their break in there. But you can go in if you want to.” So I did go in and make the phone call, but it was as if I was intruding on the only place where one could make a phone call. And they were the only words she spoke to me for the whole week that I was in there. And she was running the ward, so… (Pause) Her assistant, trying to do three jobs at once – do a drug round, clear breakfast dishes, three hours later than the drugs were due, and give out wash bowls and leaving old ladies with a bowl behind screens for… (Pause) I think I’ve said sufficient. (Chuckles) I’ve… I What’s your feeling about having to go back in…? If you had to go back into hospital again? R Well I’ve said that (pause) if I have to do go back, and I think, you know, with this AF and COPD and things, I think I will have to go back in. And I’ve said I won’t go to this ward. But really, when you get there you’re in their hands. You know? And if you have… (Pause) There’s very little you can do unless you discharge yourself. I tried to discharge myself. (Pause) I was put in a wheelchair, asked to sign the form. I couldn’t get down to the entrance to order a taxi because I couldn’t walk. And er, (pause) I said, “Well…” (Pause) This… This was a young, disgusting houseman… (Pause) “How can I…? (Pause) Will someone get me to the entrance so I can order a taxi?” He said, “No, they won’t.” I had my bags and… (Pause) “Just sign the form and get out.” And I couldn’t sign it because I couldn’t get down to the entrance, you know, so…? (Chuckles) (Pause) I So you had to stay. R I had to stay. Yeah. Yeah. (Pause) But… (Pause) I And you’ve got some care in the community? You’ve got some social care support, have you? R I have, em, (pause) home help – they call them carers now, I think. An hour on a Monday to do help with the housework. And an hour on Friday to do the shopping. (Pause) Er… (Pause) I And are you largely housebound? R I’m largely… I try to get out. I have a friend, a friend lives in Consett. I try to get out, perhaps once a fortnight, with her for lunch and… (Pause) It’s quite difficult because, (pause) you know, she has a family. She has… She works full time. She has a daughter… You know, they’ve just had a baby. (Pause) And… (Pause) This is all, really, just by the way. I just see her either once a week or once a fortnight, you know, but… And I try to go out. I go, er, down to town and have lunch and get a taxi back. (Pause) And I’m shattered for two days. You know, just for having lunch with… (Pause) But it’s… I just feel unless you can keep on trying or go, perhaps, to the Metro Centre… Get a taxi over and then go to a restaurant and shattered. You know, so… I So the library service is important to you? R Hoo… Gosh, yeah. And the lady comes – Violet, I don’t know her surname – she’s been absolutely terrific, she really has. I’ve always read a lot, but now, as you see – I don’t know if you saw, I’ve got a (pause) a trolley downstairs… A shopping trolley. I haven’t driven for 4 years. I packed up driving. Which was a silly thing to do at the time. But I’ve always… You know, for 4 years I’ve walked along there and, er, (pause) got the books from… You know, there is a library along there – you got the books from the library along there. Then when all of this happened and then, I think I rang them and asked them if there was a mobile library, you know. Someone said you could go to the end of the street or something. And then, (pause) er, I came that this… Violet came and she came once a month. She comes once a month. She leaves me 10 books. She’s absolutely… She’s just got a terrific personality, you know. And you just wished that every carer, every nurse, every doctor, could have the personality and the enthusiasm that this library lady has, you know. Which is (pause) asking a lot, but… I So, her particular qualities, (pause) are…? What would you say they are? R Well, (pause) she brings me books that… You know, she’s obviously thought of what I like. I… I can’t concentrate much now but, you know, I used to like, em, I think I said to her I like female, English authors. And now everything in… (Pause) Or mostly in large print, because I read mostly in bed. And she doesn’t forget anything. You know, if you give her one book that, if I’ve read a review of it she’ll, next month, she’s got it there for you, you know. She… I can’t read… Read… (Pause) Paperbacks because I can’t hold them with this hand, you know. So as soon as I said that to her, you never saw a paperback again. You know, she’s just got a caring attitude, you know, so… (Pause) I just think, em, (pause) I just think a lot of her. You know enough… (Pause) She’s just a jolly good all-rounder, you know. Someone that you don’t see (pause) much of, today. You know, I find most, a lot of people are selfish. A lot of people are… (Pause) and the just gives you a bit of faith in human nature again, you know. (Chuckles) (Pause) So… I (Pause) Thank you very much. |
Anne’s Story
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Transcript
| Erm… I’ve got a back problem at the moment. And this has been going on for almost a year. Erm, about (pause) 11 months ago I suddenly started having a sharp onset pain which radiated from the buttock down to the back of my leg. And if somebody at that point in time had actually said to me it was back problems, I wouldn’t have believed them. Because it didn’t… I’ve never had back problems before. Erm, my background is nursing so I’ve always known how to take care of my back. I’ve known how to move people, how to… Erm, be able to transfer patients safely. And I’ve never had any back problems. But my husband has and I’ve seen what it’s like when someone is living in extreme pain. And I’ve also known what it’s like, erm, to see someone depressed as a result of that. And also the frustration that person feels when they don’t know what’s wrong with them. But the experience I’ve had over the last 10 months, I’ve certainly compounded that. And it’s given me much greater insight into the full impact and frustration of trying to feel as if you’re being managed effectively. (Pause) Erm, we moved doctors about 2 years ago because we moved house. And I’ve never… I don’t go to the doctors. If I had been to my doctor (pause) the same number of times this year as I’ve been to the doctors I’m now with, I think alarm bells would have been going off. Because I was one of those patients that were seen for female health checks and usually with the children when they were small and the occasional chest infection that people get. You know? When you’re working in the Health Service and you’re picking up every virus or bacteria that you pick up when you’re working out in the community. But certainly I was not a regular doctors visitor. I believe it’s best to just manage it yourself. And if things are serious eventually you’ll be led… You need to go. So, and that’s the attitude I took. I had this pain down the back of my leg. Everybody had an opinion on what it was – tendonitis, it was an inflammation… And I tended to agree. That’s what I thought it was. That I somehow had this inflamed tendon. But after a month I thought, “Right, I need to go and see the GP.” So I made an appointment, saw this male doctor and he said that he didn’t know what was going on in my back. Well, he didn’t mention back then – he said it could be my back. But he thought that it would be best that I would be referred to a physio. So this would have been, possibly, mid-March and in the meantime he gave me some medication. Which was, erm, dihydrocodeine. Which is quite a strong medication. And because I work and because I need to function I was quite reluctant to take that medication and I’m sure they would see that as non-concordance or non-compliance. But the reason being I’m the person who supports the household. I work. And I need to be able to come to work and be intellectually alert. And I also knew that if this pain that I was having – that was not the right medication if this was a nerve pain. So… (Pause) Erm, I managed it myself with paracetamol and ibrufen. I could cope with it. The only time I got it was when I had been sitting for periods and then suddenly I would get, like, a cramp down the back of my leg. And once I was walking I was able to walk for miles – which we like to do. I was going to the gym 4 or 5 times a week and doing 20 minutes on the treadmill and 20 minutes on the bike. Erm, swimming was a bit problematic. But that was where my physical capability was at that point in time. So I then, erm, saw the phsyio and the physio said that if it was a purist… A purist would say it was a back problem. But he wasn’t convinced. So for between – I would say probably late March, April until the end of June – we didn’t have a diagnosis. And when I was going back to the GP I was told that they couldn’t do anything until they’d had a diagnosis. So the physio referred… Suggested I went to see, er, someone privately for a second opinion. Which I did. And this guy actually said he thought I’d had a pro-lapsed disc in February. So he gave me back exercises, which I did regularly across the summer – could actually feel some improvement. Which was great. We went on holiday. At least I felt as if I was a little more agile. Less pain-free. I continued to take paracetamol and Ibuprofen. And then in October I had bent down one morning to pick up the ___ from the bottom of the bed and had, like, this electric shock across the middle of my back. And since then the pain has been excruciating. And more debilitating. I went back to see my private physio who said he thought that I’d probably just aggravating the nerve. To continue doing the exercises. And at that time I actually felt quite isolated and quite alone. I felt absolutely lost in a system that I should have known how to find my way around. So, erm, I bumped into the physio that I’d been seeing at the gym and explained the situation and he suggested that I made an appointment. And usually making an appointment can be a 4 week period before you actually get an appointment. So that was another 4 weeks, taking us up to November. By the time I saw him, erm, (pause) he asked me what I was doing in terms of exercise. He still thought that possibly it was a disc. It was just sticking with the exercises. And, erm, my husband at this point was quite concerned because, obviously, I was… My mood was becoming low. I was feeling very frustrated. I felt this had been going on for 6 months with no progress. And I’d also had another injury, which was being managed by the orthopaedic surgeon. So he suggested that I went, erm, a rehabilitation centre that the Fire Service run. Thinking that that might, erm, enable me to at least become more physically active and perhaps cope with this situation better. So I went to see my GP, erm, before Christmas. And she said she didn’t really want to sign the form until I’d had a back x-ray – which I was surprised at because they tend not to do back x-rays for, erm, back problems. Er, it’s generally frowned on. And certainly a friend of mine – who’s a Nurse Practitioner – she was quite surprised as well. But anyway, I went before Christmas, had the back x-ray. She gave me some tramadol. She said to relieve the pain. And I have looked in the ___ and I know that yes, it can help nerve pain. Because I’ve now (pause) adjusted to the fact that this is what I’m having. It’s sciatic nerve pain. Erm, (pause) the tramadol made no difference, whatsoever. So I had an appointment to see her just after Christmas and I went back to see her. And I said I’d come for the results of my x-ray. And I already knew what the results were because she’d filled in the form to go to the rehabilitation centre. And this was my medical history. A hernia at the age of 4, varicose vein surgery and minor degeneration of the spine. And that was my medical history. And (pause) she said that I had minor degeneration of the spine and that, erm, (pause) the way that it was best managed… It was arthritis, so I needed pain killers and I needed exercise. And I was quite distressed. I felt quite low. I (pause) felt (pause) that I wasn’t being listened to. I said to her that I felt that it might be seen as minor degeneration – which I think anyone of my age who was x-rayed would see. Because of the very nature of the job. And she said, well, that was the way it had to be managed. And I said, “Well I think I need to be referred. I feel I need to be referred and see someone else.” And she said that no-one would look at me, not at my age. And not with that condition. So I said, well I knew that some of my friends had been to a back management service and, er, she said, “Well that would be in this pain service that was provided in the hospital.” But there was an 8 month waiting list. So I felt quite despairing at the thought of managing this for another 8 months. Er, without… And she said the G… They would expect that the GPs would start to manage the pain within, erm, the primary care. So she gave me more medication. I had to continue taking the tramadol. And then she gave me some ___, which is a ___. Erm, and then she said… I asked whether it would be safe for me to take them since I had, once had a ___. And she said, well, if I had a problem with that, she could give me a ___ which would protect the stomach. And I explained that I’d had a real reaction to ___ when I’d had the ulcer and had real, you know, bad gastric (pause) complaint. Which had inhibited my quality of life completely. So she said, “Well, we would probably do without that at the moment.” And I said to her, well, I knew quite a lot about pain. And my understanding was that for sciatic pain it was best managed by, erm, ___, ___, something like that. And I know when my husband has a problem with nerve pain and I asked about ___, I was told that he had to been by a consultant. Now I felt strong enough to be his advocate and say to her, “Well, how long will it take to see a consultant because he was obviously worse than I was.” And she said two months – and I said, “We’re not prepared to wait two months. I think you need to have a conversation with the consultant.” And she rang me and said, “We’ve got a script for ___ for him.” But that was interesting that I felt that I couldn’t actually do that for me. I felt that although I’d challenged her, she said, “Well I think the first step is ___.” Which makes you concerned that this is about finances. And I also know that when my friends and my husband were taking ___, you know, they lost the morning. And when you’re working, how can you lose a morning? How can you perform? And I said to her, “If I was still a District Nurse, I would have been on the sick now for a month. I would have been on the sick for, actually, 12 months. I wouldn’t have been at work since last March. You know, people would be looking at me now and thinking, “Well, what exactly is her diagnosis? What exactly are they going to do to manage this lady?”” And when I came out of the surgery I cried, all the way home. Erm, I felt so despondent. This was on the Friday. The Friday before New Year. New Year’s Eve we had friends coming round and I just felt very depressed. And I made a brave face of it. And… But I’ve never felt stress like I felt. I felt… I’m normally someone who copes – I can multitask, manage… The drugs that I was taking were making me feel sick. I couldn’t concentrate. I was dizzy. I felt shaken inside. I had a rash. (Pause) One morning I just lay in bed until 1:00 and my husband said to me, “Have you had a nice lie in?” I said, “I lie in bed because I don’t have any pain. And if I get up, I’m in pain. So why get up?” And then I was coming back to work and I had to perform on the first day – quite poorly, I must admit. And, erm, it was to everyone’s amusement. So I made the decision after about a week to stop the drugs and feel that perhaps I just manage the pain and feel as if at least I can perform. I’ve seen the physio, and at this point I got angry and actually said that I wanted to be referred. That I felt, you know, I had been a very fit woman until 10 months ago. And that I was now being, erm, pigeonholed into someone with arthritis. And I didn’t feel that there was any physical symptoms that I had arthritis. (Pause) And that I needed to have a referral. But without the letter from the GP, how could I see anybody? You know, this is the gatekeeper. And the GP who’d referred me originally, to get the diagnosis, you know, (pause) he wasn’t involved anymore. The physio wasn’t discussing things with him to my knowledge. He was now in a position where he was having to persuade this other GP to refer me. And she’d already decided I was probably come menopausal woman with, erm, (pause) with back pain. That was minor. And, you know, as empathetic as she’d tried to be, I had still been pigeonholed. And, er, I was insisting that I… Even if I paid privately. (Pause) And I’m someone who works in the NHS. Who is familiar with the NHS. Who has navigated the NHS. Who’s been an advocate for so many people in the NHS and yet I’m sitting here feeling like this. In absolute despair. And wondering what is the end going to be for me? And it leaves me with little hope for people of my generation who are now the ones who are going to be expecting something of the NHS. And it seems as if, because of finances, and because of different, erm, attitudes, you’re just left to get n with it yourself. (Pause) I That’s great. R Is that alright? I Fantastic, yeah. R Mmm. I I didn’t realise it was such a serious situation you were in, you know? R Mm-hm. Yeah, yeah. I (Pause) And, erm… (Pause) You obviously think that doctor had just pigeonholed you? R Mm-hm. I Yeah. (Pause) And she could put… Is she the person who refers you then? Or she’s actually blocking a referral or…? R (Pause) When I had… When I asked the doctor if I could have a referral I said that I felt that I really needed to be referred to a neurosurgeon. And she said that nobody would look at me because of the minor diagnosis. And I said to her, “Well, this might seem like a minor diagnosis for you, but n terms of quality of life…” (Pause) And because she doesn’t know me personally, I explained to her the sort of physical activities, erm, (pause) you know, the personality that I was. And how people are commenting that that’s changed. That I’m quieter. That, erm… (Pause) I think my husband’s quite worried, because my moods are quite low. But that didn’t seem to really persuade her. She felt that her clinical judgement was that I didn’t really need to be seen. And because of the minor condition it was not something that should be seen. Only because of the arthritis that she now decided I had, would I need to be seen – and possibly for surgeon… By an orthopaedic surgeon when the arthritis had got so bad, erm, that perhaps they needed to do some surgery. But my feeling was, well, how do you deal…? How do you come to terms with where you are physically, if you don’t know what your diagnosis is? If you’ve never been properly investigated. (Pause) I had a fall, hurt my shoulder, erm, ___ with the physio, was eventually referred to a consultant. The consultant was very concerned at the injury. He sent me for an MRI scan, and I’m waiting to go back to see him. And he’s telling me that I may need surgery. Now, at least you know what you’re dealing with. At least I know that I can make choices and I’ve got options. But now I can’t see any option because I don’t know what those options are. And I feel, until I’ve had the relevant investigation – which I think is an MRI scan – then, only then, can they say, “Well, this is what you’ve got.” My husband, he left the Fire Service because of a back injury at work. He’d had back problems with discs over a period of years, on and off. He eventually, after a fight, with several GPs, went to see a consultant, had an MRI scan, and was eventually told a diagnosis. So he understands what the diagnosis is. And he understands that there’s nothing that they can do. And he understands that he will have periodic, chronic pain. And when that’s there, he manages it. It’s very difficult for him, but he knows that that is what his life is going to be. I think, perhaps, I would just like to know what my life might be and perhaps I’m being unrealistic in my expectations. But I actually don’t think I am. And in fact, if you look at the back standards, it actually specifies that there should be appropriate investigations. That there should be red flags. The last time I saw my GP, I said to him… The physio – I said, “I’m now getting nerve pain (pause) into the calf. I’m getting tingling when I’m standing up, like pins and needles into the calf.” But I’m just told it’s now moved to a chronic stage. |
Posted in Healthcare Professionals, Long-term conditions, Medication, Pain |
Tags: back, depression, diagnosis, doctor, exercises, frustrated, gatekeeper, isolated, physiotherapy, primary care, quality of life, stress |
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