A participatory Action Research Study with Guyanese Women Living with Type 2 Diabetes in England
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- Navigate this page:
- Management of diabetes
- Carer for mother
- Work pressures and lack of support
- Positive action
- Dementia/Access to care services
- Appendix 10. Significant Statements and Commonalities
Poor standards of care My mother was a beautiful woman to look at, very gentle, very self-contained, friends said we never seen her angry, she went through so much, never demanded anything, she had this aura, she would never say ‘oh well I won’t eat that’ that was not her style. She was such a lady and when I saw what she had to endure in that hospital. Patients used to tell me and I saw it once myself, I turned up there because of the dementia they tucked the bedclothes in very tightly and she’s pulling at them and then she is lying there totally exposed. I used to say mom, ‘this is not nice’, she didn’t know what was happening. That leaves me so upset to this day which is why I went and I said my party piece at St Helier’s and the person who was interviewing me said ‘we think that you would be pretty useful on one of these patient consultative committees’ or whatever. So I said ‘yes’. That was June last year when I saw her because she sent me the tape and I tried to get back to her a couple of times, she doesn’t reply. When the dust settles I’ll get back to them. I think they thought I was going to sue somewhere I said no because fortunately I was able to be there with my mother most of the time, friends were able to support me and a couple of relatives came from overseas just for short bouts. But some things I witnesses there and one particular nurse she actually said in my presence and my niece from Venezuela, she was sitting with me at the time, they treated this poor woman with such disdain, she died a few days later, you know they get agitated towards the end and she’s pulling out drips and all that and she said ‘this is the most disgusting patient we’ve ever had. I thought I need to complain about this. And then I thought hold on girl your mother is still there, you don’t know what’s going to happen. And this poor lady when she couldn’t calm down only needed maybe one assistant not necessarily a nurse, if they had more. Yes just to sit and chat with her, calm her down. I thought I can’t bear this so I went across and started to chat. She hadn’t even had a bit of water for the day, she was dehydrated. So I talked with her and she told me about she lived in Wellington, her home and so on. She said all my life I tried to be nice to people, why do I have to go through this now, why are they being so nasty? When she calmed down she had the water and thanked me for stopping to talk to her. Two days later she’s dead. Now you know did I just see that or could I just see that and not want to do something about it? Now I mentioned it when I saw them and how this one particular nurse was kind of... There were some very nice nurses, there were some who were dedicated but the system was beating them because they were too short staffed, they need more assistants to do the more mundane tasks to free them up to do other things but it wasn’t going to happen. I still feel strongly about a number of things and dementia of course, there needs to be a lot more education. But my mother sat there and one day said why am I here? She had completely forgotten. She could remember from way back but what she had to eat she couldn’t remember. If we had investigated the atrial fibrillation I am not saying it would have prolonged her life but here quality of life in the couple of years would obviously have been better. Management of diabetes I am not happy at the moment. Haven’t been for awhile because one type, the slow acting sinsulin is not working the way it should. You take it at night and it’s supposed to keep you on an even keel. I keep asking how is it? Last night my reading was 6.4. I am supposed to have this dose between 16 and 22 units so I thought no I’ll just have 15 because it’s 6.4 but then I thought just in case I’m on my own, the last thing I want is a ‘hypo’. I had a bit of brioche because that will keep it going with some hot water, nothing else. I get up this morning and the reading is nine something, yesterday it was 10 something. I can’t explain it. I asked one or two other people with diabetes if they’ve got similar problem. I thought ‘why am I giving myself all of this insulin?’ It shouldn’t, even it remain at a level that I went ......or should be slightly lower, what does it do? Is it just keeping staying in the system? I noticed if I am hungry and I get up in the middle of the night, I have to have even a small bit of bread or something to keep me going, some dry bread it sends it up tremendously and then on another occasion it goes down. So is it because psychologically, is it the state of mind, I don’t really know. I have mentioned it at St George’s a couple of times before they got shot of me, to the GP. I think they have diabetes educators because they do have seminars for all sorts of things at St George’s but I have not been to any of them. I’ve been to the other one run by the Diabetic Association some years ago and the other one when my hands started to give me problems again, I paid to see a specialist at the London clinic and she put through my paces and said there is an element of neuropathy, it affected my hands and possibly with my feet. I am okay at the moment but they invited me to a seminar there as well but I haven’t had... Not that it doesn’t interest me but when I was diagnosed at first and busy with work and whatever else I couldn’t take time off. I remember St Helier, can’t remember how I found it out but St Helier was running sessions on dietary needs and whatever else and they showed you how to cook certain foods. My aunt went and she learned so her cooking habits changed as well as their eating habits, they were eating like me after awhile. We never overate in that sense but more conscious of certain types of food. I have never been to any of the classes, they have little groups they form locally but I never felt sort of moved to join them. I don’t know but I feel that because I’ve tried to do so much research or to work things out on my own, a bit self-sufficient. I got my information, well I spoke to nurses because every six months at the surgery they send me the nits and bobs and I go and have my urine test done and blood test and then you have your follow up appointment and she will look at your feet but the last time I saw her she kept saying ‘why don’t you go back to St George’s? But at St George’s the senior nurse I have known for years when she discharged me and said ‘we only need to see you if something dreadful happens. In other words if you have serious side effects. I need to see....Ann is the one, there is one who does the medication, I saw her..... it must have been about four years, five years ago because when my hands were bad I couldn’t negotiate some of the pens properly so I needed ones that were easier to use. I said to her I need to come and see you so I saw her and said I am not happy with the insulin, the way it’s working but she said ‘oh I can’t talk that now’. I tried to see her before. We got on quite well because I tried the pump at one stage and one day of the pump was enough for me to know I really didn’t want one. She tried one without the insulin and the second day when we went back for follow up they said to me ‘we can see from your face you don’t really want it. Can you having to weigh everything you eat and then change this bolus or whatever you call it and then you still have to change the cannula every couple of days. I can’t adjust to it. It was there like a little camera sitting here so I come home put on all different fitting clothes, to see how I could accommodate this thing. I thought God what do I do with it? If it is a man he could stick it in a coat pocket, if you are wearing a jacket. Then when I tried to have a shower I had to put it in a plastic sack so that it doesn’t get wet. I was one of the first patients to ask about it and they weren’t too keen at first and said no but because I’m getting fed up and if that’s going to control the sugar better I want to try it. My sister had to go with me as back up and before you go to bed you had to tell it good night, you have to switch it off, press a button otherwise it will keep going through the night. No way but then I think Ann got offended, don’t know what it was but I was equally offended because when I rang her some other time and said I do need to speak with you because I am not happy with the way the insulin is working , she said Oh, yes I can’t see you today. When can I come in? She said hold on a minute and the next thing a strange person, a nurse I’ve never dealt with comes on the phone and says I can see you. I said I don’t know you, don’t bother because I thought that is not the way. If Ann had said I cannot see you but can arrange for somebody else to see you, but that was very offhand. So when I turned up for my annual check the other one Mary said ‘Oh you didn’t turn up for your appointment. I said no, I didn’t, I told them I wasn’t coming because I didn’t know who this person was? I had the insulin. It was changed when I saw Dr Whitehead but it’s still no …because Ann changed to five injections a day. After the episode with the pump I was on four injections, three of the three of the short acting Lispro and Insulatard which is night one. At that stage because I had to gone to her about the pump she said after you have tried the pump you wouldn’t mind now if I ask you to a little extra injection on top of the four. So at lunchtime I have to do two which is the Lispro and a small element of the Insulatard to slow down absorption of it so that’s how I ended up on five, four times a day. Five injections four times a day but it’s switching the sites, I’m running out of spaces. You should see what is happening there. I think it gets tired after a time and I am getting a lot o moles around here, in the middle so that takes up place and I have asked about it. I mean somebody should be looking at your injection sites. And the various kinds you put in your arm. Do I want to go injecting into my arm? I do it occasionally if I am travelling but I don’t want to make a habit of it. I feel I am really on my own right now because the GP doesn’t know much about diabetes; he used to argue with me until three to four years ago. Why do I have to test more than once a day? He used to say to me, you’re my only diabetic patient who has to have all of these test strips because they are pretty expensive. I don’t buy them, I have them, I have them on prescription but they are like £22. So if you are testing twice a day, I mean I have to do it in the morning, at night otherwise I am not going to bed until I know what is going on and if I am going out in the afternoon, I will check it because this when you see. The DVLA because of my eyes, every two and a half years I have to sit here filling out forms and say what I’m telling you is true otherwise I don’t get ....they took my licence away three years ago and gave me a provisional one that has to be renewed every three years and Moorfields had to comment , the GP, the optician. I mean I could go and do drugs now and go and drive, it‘s not a problem but because you are on insulin it’s a different matter. So when he tells me we got over the argument with the test strips I actually went round three or four places and got different quotes and I gave it to him and said ‘look if you don’t want to spend all that money then tell your patients to go here because it was cheaper. He doesn’t understand. When they pass responsibility on to the GPs he may be good in other respects but where diabetes is concerned he is no pro. Some surgeries have diabetic clinics but he hasn’t got anything like that. The nurse sees you every six months, sends out bits and pieces and you’re supposed to see her on one occasion and him on the other but when I saw him last august because when I get a virus , I go on for six or seven weeks and then my sinuses are draining all the time. Voice goes, everything goes and he should know that. I also had my big birthday coming up in August and emotionally I was a bit upset because I didn’t know whether I wanted to celebrate or not. I thought I’m missing my family so I’ll just have a quiet day. I’ll go down to Sussex, there’s a lovely place there, have a few quiet days on my own and when I come back if I want to celebrate, I will. I then pick up this virus, really bad and a lot of it is emotional. It makes it worse. I think I know myself pretty well and I know that a lot goes on in your head, and because so much has happened in a few years, it’s all condensed. I keep saying to friends, this is the first time in my life I am living on my own. It’s very strange, difficult. Carer for mother Before it was difficult with my mother because I was her carer. It was difficult then but it’s a darn sight worse now because you’re stuck with your memories and everything. There is something happening and I need to talk to somebody. I’ve got some very good friends, I don’t have many relatives around here but it’s not an easy thing to do. I know I have to cope with these things psychologically; nobody’s going to sort it out for me. I’ve got to find my own level. I would like to find some outlet to do something. I used to do lots of voluntary work before, local authority, Sutton, The risk Quality Council when it used to function as it should have done some years ago. I was a school governor round the corner. These are things that I have had to give up because of my eyes, I don’t drive at night and all these meetings take place in the winter, how do I get there unless it get taxis which I use a lot nowadays. It is something I’ve got to come to terms with but when I read some of the information in the diabetic magazine , or I’ve got my cousin’s cousin in Canada who is very diabetic she sends me lots of interesting literature over the years. They talk about your team which includes a psychologist because when you’re diagnosed you need somebody to sit down and talk about how you feel about it. When you are caring for somebody, you’re completely out of circulation. A lot of my friends are married so I can’t just pick up the phone and say shall we go here? One or two who aren’t married have done all the things that I wanted to do or gone to places I wanted to so they don’t do it again or they have not been in my kind of situation so they’ve got other ongoing commitments in their lives. One used to ring me almost every morning to make sure I was ok. Now I am off to Cuba. I’ve got to find my new milieu; I don’t know where it is or what it’s going to be. Work pressures and lack of support The people at work don’t know how to react to you, and if they want to be nasty or if you are at a meeting and not feeling particularly clear headed nobody’s going to make allowances for it. Or if you need to stop and go and eat something, the meeting is still going on. ‘If you can’t stand the heat in the kitchen then get out’ that is the reaction you get. Nobody is supporting you in that respect. Then you move on to tablets so you know your condition has got worse so you’re thinking , one tablet, two tablets then it’s four, six and then insulin and nobody is saying to you ..... Somebody said to me ‘how do you do it? I couldn’t bear to inject myself , however it’s a question that I don’t have a choice, I’ve got to face this. My sister could never do it for me when I had this operation on my hand, she was very squeamish about it, she just couldn’t. So it is the people who are with you as well as the diet, when you are not feeling well or you eat something you know, friends will be offering you...It is so many facets but you really need psychological support. Okay, the hospice offered me to arrange counselling when my sister died, and when my aunt died, I didn’t have time to worry with that because when my sister died, I was busy with my aunt and then busy with my mother. I haven’t had time for all of that. But I have time now which is why maybe it’s all going wrong in my head. When you get to this stage in life you think of all the things you should have done or explored and I never seemed to have the time or the health to do it. Positive action Well you just have to go for it girl but what it is I’m not quite sure. Cuba is a start; I am just hoping that I can take the long flight because I haven’t been to Guyana for 10 years. Flying Virgin Altantic direct from Gatwick. Whether it is a side effect of the diabetes, suddenly when I’m up there, for anything longer than five or six hours, I spend half my time in the toilet, I can’t explain it. I asked the GP last trip before all of this happened; we used to go to Barbados and then the last couple of trips we broke in Antigua and stayed a week. I thought it’s a shorter flight , seven and a half hours from Antigua, gives everybody a chance to rest, I’ve have friends there and should be okay on the flight back , I wasn’t. I literally sit and pray and as soon as the plane lands I’m out to the nearest toilet, I think it may be connected to the diabetes. I don’t know but I asked the GP but he couldn’t be bothered, he obviously does not know. All of those things make a bit wary. Could be without realising it I am a bit worked out, because it happened once, can happen again or just stress. It is not the journey itself; it’s the hassle of getting to the airport. The last time I was so furious I thought, ‘we don’t want to be late, we want to get to the airport and it’s such a long winded process, then when we were there, my mother went to the ...She said she didn’t want to go to the toilet, then she went and we said okay, we’re going to be all here when you come out just wait for us and we came out we couldn’t find her, she’d gone. She said she decided to go to for a little walk. Now you can imagine a crowded airport and with dementia. You think it’s maybe just an age thing. Dementia/Access to care services What we would call senility which comes now under the wider umbrella of dementia but we just thought there were odd things happening or she’d forget. We were in Madeira once, a place that she knows and she went to have a shower. I thought she’s been there a while and then she came out and we realised she hadn’t had a shower. She said what happened? She could not remember because it’s a strange bathroom , she could not remember to turn the tap on, how to adjust it so she must have been fiddling for while trying to puzzle out in her mind what was going on. While travelling we had to keep an eye on the ball but both of them, my mother in particular, my aunt was more or less until the thing hit her brain. We just thought it’s an age thing and we’re going to live with it, but then in her gentle way she started being a bit stroppy, you couldn’t get her to move or do something she didn’t want to do but she went through hell because it is not nice to have to observe or live with and I got so angry at times. Why does this have to happen to my mother? She was so particular about her dress or her personal hygiene and everything. It’s like having I think a baby; you become so overprotective because you are doing for her the things you would for a child. I remember after she had a shower, I’m putting cream on her skin and dressing her, she’d suddenly come alive because before it would be ‘ I can’t stand it, you’re going to kill me if you put me in the shower and then when she finished and nicely dressed, hair combed and everything, she would say to me... I said to her ‘now shall I call the undertaker’. Some things were amusing but there were other times depending on how you feel or how tired you are and these hands, in and out of water all the time. We had a row the night she collapsed and that hurts me, she’d say ‘it won’t be long now, it won’t be long. I told her to stop saying that since I was about four years of age you’ve been telling me you’re on your way out. She’d sit there, you’re trying to eat and she looks at the plague there, the Last Supper and she says no I can’t, you don’t eat as if someone is telling her not to eat. So you have finished cooking like 6 or 7 o’clock at night thinking of winding down then she come back at 8 o’clock and she’s hungry. So you give her but she takes an hour to eat and if you use herbs she has to remove every little spec. She had to get rid of it and then another time, it did not matter. It’s now 8 o’clock and then I I’d say ‘do you want a fruit salad? Yes and that night I felt so tired and then I have to clean up all of this and I said you’re treating me just like an unpaid servant. I think I was upset and tired. Then she turned around and said something to me ‘of course, it won’t be long now. I said oh please and she went upstairs and I thought that was the last and that hurts because it’s something that I never would have wanted to say, but I was so worked up that night. The following morning I thought I was expecting to see the nurse coming to see her about her dementia so I thought let her get up slowly let me do my injection , have my breakfast and then I’ll go and get her washed and dressed. Before I could finish breakfast I heard a thump. I thought oh God, she’s fallen again so I went upstairs and she was lying on the bathroom floor with her head under the basin. Big massive attack, her heart rate when I called the paramedics was only 37 and I was thinking that it was like other times. I told her I can’t leave you lying here, this was before I realised how serious it was. I tried to move her but that was the worst mistake I made because not realising that it was the heart, the exertion in trying to lift her was hard work and she tried to help me. This awful sound was coming from her and I remembered what happened with my sister when she was dying I thought, she was on her way out, the thoughts that go through and I am screaming at her, please hold on. She couldn’t tell me what was the matter so in the end I had to lie her back on the floor. She went to St Helier, two months in St Helier from a lady who used to go the toilet mostly on her own they just let her lie there, they tell you to do everything while she is in bed and they’re telling me this is their way of coping. It makes life easy for them. A long sad story but I thought I was caring for her to the best of my ability. I never wanted her to be in that situation, by the time they finished with her, she was doubly incontinent, the dementia was much worse and you could not put her in a sitting position without two people doing it. When she came to a few days later, she thought she was falling off the bed and she was holding on to the sides and I gave her a wash and she had something to eat. She said to me when we’ve have finished eating, can we go home. I had to say mom, sorry I can’t take you home not while you’re like this and that was my song for two months. The biggest pleasure would be to see her come through that door with a smile on her face but I couldn’t. I am asking social services for their help but for whatever reasons they wouldn’t meet me. In the end I was told how to ask for, and when I mentioned a name, they’re suddenly talking to me but it is too late. She spent two weeks in a nursing home. Always seem that you’re doing your best, you think that you’re not unintelligent, think you’ve got the measure of situation and you’re trying to cope, can cope with a certain amount of knowledge and help but it all seems to disappear where it is when you need it? In all of this, GPs no help, when I did go to him with a virus and with my weird sense of humour said I think I have got swine flu and need help, he went loopy. You’ve have been sitting out there and you’ve got.... I said I didn’t say I’ve got swine flu, I said I’ve got a virus for like 11 days. I need something to clear up what’s happening. Don’t speak to me, jumped up, ran outside and came back with a mask. I should write a book. He hands me a mask and told me to put it on, couldn’t speak to me until you’re wearing it so I put it on. I have a look at your throat but don’t cough. I thought what is this? I’m feeling mentally and every other way low, I needed someone to cheer me up and of course the receptionist and the people in the waiting room probably thought this woman has got swine flu. When he was quite finished, I asked him for the symptoms of swine flu. He’s telling me I should have rung the helpline now, they would have probably told me that I have swine flu so wouldn’t have had this conversation with you because of Tamiflu and then exited. He is telling me, any vomiting, temperature, I told him no. I’ve had a temperature, keep going hot and cold but when you are fighting a virus, this is what happens. I haven’t got any of those things. So as I’m here can you give me the results of my diabetic tests? He brings it up on screen but he can hardly wait to get shot of me. Oh that’s fine everything, the liver is a bit high. I said what do you mean? Oh you don’t need to worry about that. What’s the HbA1C? That’s fine. Now I know it’s higher but that was the consultation. She identified difficulties in accessing support and services for her. I think it’s there in theory but people see me as being self-sufficient and strong and I know what I’m doing so they think which is all the more reason when I hint or say I need some clarification that you really need it. At St George’s that people that I’ve known for years, the doctor been very helpful, we sit and chat. She told me there was not much hope for my sister. She told me how many months she would have and thought she was really getting up my nose. She said I think you need to face it. So for that I have been grateful. It upset me at the time. I couldn’t tell my mother but spoke with my aunt who was probably going through the same thing. She was quite deeply shocked. The doctor isn’t one who suggested that i need to be discharged, it’s the nurse. I didn’t see her the last time I went, it was the nurse. They just seem to think you’ve had it for years maybe you’re coping very well, why are you making a fuss if an HbA1C it a little bit higher than it should be but when it’s happening very morning it’s not right. But even if I was sitting pretty you still need some kind of back up until your dying day. You need people to reassure you to say what are your concerns at the moment? Either they can do away with those concerns by talking it through with you or taking some sort of action. But they’re all too busy and too jaded at the moment, there’s so many people coming through with the condition. I thought shall I start my own group? But you need back-up, medical back-up. I could join a local group, we could sit here and talk about it but if things require clarification or attention, you haven’t got access to that particular source. I think there’s a local paper, Sutton had a group of diabetics who would go walking. I think I kept the advert but of course I couldn’t involve myself in anything like that at the time. The diabetic Balance magazine is a very good magazine that comes out every month and people write in but all sorts of complaints or they write letters saying how they feel about different things. I can read it and then write in my comments. I’ve rung them a couple of times to ask for information but again haven’t found that they are able not on the phone to go into much detail or in-depth. In theory there is a lot about but it’s whether it’s being used or actually fulfilling the needs of people who are using it. I don’t mind meeting fellow Guyanese in the clinics over the years and I chat to everybody. Since they’ve changed everything at St George’s even if I was still going, I don’t meet the same people. There’s one man I may see occasionally but they’ve all been packed off to their GPs so we don’t have the network any longer. There was somebody who used to come from Kent, the chat who lives in south-west London, lots of West Indians living around the Tooting area. I’ve got lots of friends who are diabetics. I told them we were eating out, I might be a little bit late, but I don’t know. I’ll check with Grace if something’s happened but she lives near Victoria. She comes from a large family, every one of them is now diabetic and arthritis is the other complaint in the family. You would have to visit her because she has just had a knee operation. I think to do with the diabetes so she is not mobile. Hers has only been diagnosed in the last couple of years and she’s in her 60s. She would be about 67 but her mother was diabetic even in Guyana. I don’t think she ever lived here. It is one in five or something like that in Guyana. Pat my friend was saying last night that she thinks one of the reasons why it’s so prevalent now in Guyana, it is not just the stresses and strains that they live under but now people, there’s a lot more money about, people are eating differently and they want all of the nice rich foods. The fat, pizzas that’s a common way of life, so like Amerindians. Appendix 10. Significant Statements and Commonalities Significant statements for participants are detailed below and colour coded for each participant.
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