Archive for December, 2011

Rosie’s Story Part One

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Right, well this is my story. My name’s Rosie, I’m 53 years old, I have two sons and they’re the focus of my life. I have had Parkinson’s disease for 23 years although I’ve been diagnosed for a lot less than that. Originally after I had my second son, I was told that I had Parkinsonial symptoms but not Parkinson’s disease and it was thought that there had been a cerebral incident during the birth of my son and that they said perhaps led to the problems with Parkinson’s. I started shaking down my left hand side originally and it became quite profound and I went for various tests and all sorts of treatment but nothing stopped the shaking at all. And that culminated in me having stereotactic surgery at ………. two years after ………. was born.

That surgery was extremely successful and stopped the tremor for about five years, five or six years but then slowly things started to happen again. Other symptoms that I hadn’t originally associated with the Parkinson’s started to be noticeable such as the rigidity of my face when I’m off, and I’m slightly off now but having to take medication I should be right in a few minutes. But the rigidity in my face makes my face look as though it has no expression and this caused me a lot of problems because I felt as though I looked as though I was being snooty or disinterested in people when they were talking to me and eventually I found out that it was something that was associated with Parkinson’s.

So I had the shakes and the rigidity in the face and then I started getting stiffness in my limbs as well and gradually my concentration I noticed started to wane when I was off. During this time I was working as a manager in the Health Service and I have had to stop working as a manager as it greatly affected my career over the years but I still work, I work for 20 hours a week as a receptionist in a local hospital and then of that it’s a great source of inspiration to me.

I get involved with all sorts of things with the health workers who involve me in the team a lot and support me a lot at work and also I get to talk to a lot of patients and they’re able to sort of feel an empathy with myself, for the problems that I have and the talent that we all have. But it’s concentration that really made it impossible for me to work as a manager; I could no longer chair meetings and things like that.

But I’ve always wanted my life at home to be kept completely separate from work and also from the health problems that I had. I like to keep the focus on life at home to be having fun and being a family and enjoying ourselves and I didn’t want the boys to grow up thinking of Mum as being disabled or in any way not a mum so I’ve always joined in everything that I possibly can and they don’t think of me as having a disability at all. They think of me as Mum who can do this and do that and they expect me to do things like sponsored walks and involve me in all sorts of physical things. They both love sport, both heavily involved with rugby. Rugby is my eldest son’s career, he’s a development worker and so they both expect me to do all sorts of things. And so far I’ve always met, I’ve had (inaudible) and that makes them feel very proud. Sometimes I think they have been criticised for not giving me space for my shakes and rigidity and so on but it’s really been a great incentive for me to keep going against all odds. They’re a wonderful source of inspiration to me.

I’m losing my thread now.

So, the start of Parkinson’s, as I say was when I had the cerebral incident, then I had stereotactic surgery and the symptoms came on further and I was diagnosed in the mid 90s. when I was diagnosed it wasn’t a great shock to me, because I more or less guessed that these other symptoms had meant that things had progressed and gradually I just came to accept that it was some form of Parkinson’s anyway. I had great support from my consultant who was a pioneer in Parkinson’s treatment. He’s continually suggesting different forms of medication or therapies for me to use. Different ideas for me to try.

Over the 23 years that I’ve been involved with him he’s given me great support and introduced me to other professionals who are expert; like the PD nurse who luckily for me is absolutely excellent and I tend to dip into services when I need them and then just maybe have no contact for months. And when I need help again they’re always there for me. I self refer and I find it’s a great system that I always know there’s a safety net there for me to turn to people if I need it; but if I don’t then they let me just get on with my life which is the way I like to run it. so in the normal course of events I, …. do you mind if we just.

No, we’ll stop.

Rosie’s Story Part Two

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I go to work, I socialise a lot, I try to have as normal a life as possible. I pursue all the interests that I had over the years and Parkinson’s has never really stopped me doing anything. It’s just that I’ve had to think of ways to enable me to do things rather than not doing anything at all. I still go horse riding when I can, but I have to go on a known, slow horse. I still ride my bike a lot; I have to just allow more time to get myself ready for these things. I travel a lot; I go away and see friends and so on.

But I just have to plan things out and that’s really what it’s meant in my life that I have to be a bit sort of over enthusiastic on the planning stages and get everything off to a T then things are fine. But I like doing that anyway so that’s fine. Basically I think what I’m saying is that Parkinson’s has never been the focus of my life; doing what I want to do and following my interests and following the boys and things like that have been the focus. Parkinson’s has had to fit in with that and I think that that’s perhaps the whole approach to the illness or the condition that I have is that I try to put it to the back of my mind and live life to the full.

My, the teams that have been involved with me have always helped me with that and suggested all sorts of things and ways of coping. My physios have told me about mirroring and what to do when I freeze and queuing and all this sort of thing which has been really helpful and exercise and following through; stretching exercises as often as possible and that’s really helped me moving and does help me a great deal.

I also take a lot of medication that has gradually built up from being very little medication to a lot of medication that I now take on a three hourly regime throughout the day. But I’ve been taught by the PD nurse and the other members of the team how to take it on time and to keep as long as possible moving and functioning normally. I’m not aware of looking any different or moving any differently when I’m on a good day; on a bad day I shake a lot but I can always do what I plan to do. Whenever I’ve had a problem and thought ‘right this is it, I’m going to have to change my lifestyle’ or whatever, my consultant and the team have always come up with a way round things that, either by altering medication or exercise or whatever so I have a great deal of faith in them. Changing the cocktail of the medication has helped in that I find that as long as I stick exactly to it, on the times, that you know generally I’m fine.

There’s been some problems when I’ve been in hospital and most of the time I’ve been in hospital for problems with my Parkinson’s so I’ve been on a neuro ward and when I’ve been in a neuro ward there’s been problems in getting my medication on time which I found really quite strange on a ward where there are meant to be experts in caring for people with Parkinson’s, but it’s surprising how little training or understanding that there is or was done in Parkinson’s.

More recently I’ve had a lot of input from social services and the health team who have together come up with a direct payments package where I buy in care, where I buy in care that I need when I feel I need it and that has worked a lot better than me being admitted to a neuro ward. I’m not being critical of the individual members of staff who have been available to me on the ward, they’ve all been very kind and professional people but they haven’t had intense training in Parkinson’s and how you MUST have your medication on time and when I don’t have it on time I go off and become really uncomfortable. And I’ve felt as though I’ve been a nuisance sometimes and I’ve had to ring again and say ‘you know I really do need my medication’ and so now when I go into hospital which I haven’t been to a neuro ward for over two years now since I’ve had the direct payments to buy in my care when I need it, I find that the staff are a lot better trained and know and understand why you need to self medicate or have your medication on time.

Self medication has been on the option on the couple of occasions when I’ve been to hospital and that works very well for me but I do understand the problems on the ward when there’s patients may have access to your medication, you’ve got to be very careful. So you lock it away all the time and so on, and you are responsible so I do understand the problems with implementing the schemes, the self medication but I think that the direct payment scheme has helped keep me out of hospital because I can ring up and get care and support whenever I need it and not on a routine basis, so that’s what I do and it works well for me.

I have a worker that I know, whom I’m pleased and comfortable to have in my home, she knows me very well, she knows exactly what to do when I’m feeling quite poorly and because of her we’ve been able to nip things in the bud. I just ring for her to come in and she comes and sorts me out and then goes and I get on with life for another few weeks. So it’s, that’s really helpful.

But recently I had an episode in hospital for something that wasn’t associated with my Parkinson’s and I asked whether I could self medicate when I first went in and I was really surprised when I was told that ‘yes I could do’ and they were very supportive, they were great on the general surgical ward and I was, there was no problems at all, those first days that I went in but then I unfortunately had complications and wasn’t able to self medicate because I was in the high dependency unit and had, had to have a transfusion and had drips and all sorts of things plus other medication and my Parkinson’s couldn’t be kept under control for a while ‘cos it couldn’t be given intravenously and I did definitely have real problems because I kept moving and became restless and so on and I had to be given medication that was not my usual medication and I had to take a (inaudible) that’s dispersible rather than the usual medication cocktail that I take and so I did become quite uncomfortable and so on until they refined the Parkinson’s medication. But the hospital team worked very closely with the PD nurse and my consultant neurologist and they were able to really help me so I was very lucky that there was such supportive staff who would listen to what I was saying or needed or what was uncomfortable and together we worked out a solution to it but that was only because of the interest of the staff who were nursing and their support.

But I think it’s very important where possible for people who have Parkinson’s Disease to self medicate when they are in hospital; it means that there’s less pressure on the staff and that the patient can regulate how they’re feeling and keep on top of it and keep them self comfortable. A lot of the time I’ve seen people with Parkinson’s on the wards who’ve not been listened to, not purposely ignored but people don’t realise because they’re softly spoken or their voice is weak then they don’t hear necessarily what somebody’s trying to say to them. So I think I would just encourage people to listen as much as they can to people with Parkinson’s who usually know their own condition, the way they’re the feeling best and to go along with that wherever they can.

I think that’s why as I say every individual that I’ve come across has always wanted to know more and to talk about it and to try and communicate what their needs are and so that’s what I always try to do. Sometimes people think that you’re being stroppy but it’s not, it’s trying to work out a solution that will work within the ward as well. My time in a hospital has always been very positive, all of the staff that I’ve ever been involved with me have been really wanting to find a solution for whatever problem I’ve had and I think as, as long as I can I’ll try and develop good relationships with them, because I’ve never come across anybody who hasn’t try to do their best for me or tried to work things out with me.

I think it’s really important for people with Parkinson’s to help themselves as well. I’ve found that people with Parkinson’s seem to be hesitant in coming forward and being assertive and saying what they’re wanting and following that through and that’s sometimes created a problem for themselves. I always believe in trying to communicate with people even if it’s difficult and difficult sometimes in terms of energy as well to actually sit down when you’re feeling dreadful and trying to put in your wishes or what you want to have done in to words is really difficult sometimes when you’re feeling poorly or off. But it’s so important to communicate and I think that we’ve all got to take responsibility to doing and I would just ask that professionals listen to what we say and I’ve always found that they have done and I think that’s basically my story so far.

I’ve got a deep brain stimulator that’s fitted, I had one put in at ……… about ten years ago and then one was put in ………. about five or six years ago and that’s helped me a great deal to keep my mobility and the staff that I came across on both occasions worked tirelessly to get the brain stimulator working correctly and I just found everybody so helpful and just little tips that the staff were able to give me helped me so much in life’s, when you’re at home and out and about.

I think that you know, staff don’t realise how much one little tip helps so much. I mean the things like stepping over a line when you freeze is something that I use so much especially when I’m shopping and I suddenly stop and (inaudible) happened before, I was told that tip by a physio, it was really a problem to me, freezing and I was avoiding shopping as much as I could because of the problems it presented. Whereas now I can get going again really quickly so that’s very helpful.

I don’t consider that I’ll deteriorate, I don’t think of the negative aspects of it, I just think of today and as I say, so far, so good, nothing’s stopped me so far. Just made me do things a bit slower and that’s how I think of the future really so I think positively and I’ll carry on doing all the things I do; maybe a bit slower in ten years time but that’s it.

Thank you very much indeed

That’s alright.

Margaret’s Story Part One

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OK Margaret, thank you for agreeing to do this in the first instance. I guess that you have lots of stories within your story really that you’ve experienced health care and social care from different aspects so I just wondered if you’d like to share with us your experiences and sort of start from the beginning really or start wherever makes sense?

Yes Sandra, thank you, I was diagnosed with Wegener’s granulomatosis back in 2002 and my experiences of the health care at that time were very positive. The only blip was I do recall the GP telling me to prepare for something sinister. I was having problems with the lungs and breathing and coughing and a lot of other complications but I do remember before I was actually diagnosed the GP did say ‘look, this x-ray is looking serious, prepare yourself for something sinister’ and looking back that was a little bit jumping the gun I feel now. It did put the fear into me from that, really from the word go and yet when I eventually saw the consultant it was quick actually it was a fortnight appointment, it was obvious then to him that cancer wasn’t at the top of his list

So could you just say what the actual condition means?

Yes it’s called Wegener’s granulomatosis which is named after a German doctor who came up with this idea of granulomas. So basically I have too much immunity and that works in on the body and attacks organs, so it’s a multisystem illness. In my case it was limited Wegener’s which means that the lungs and the nasal cavities were affected. In other patients, it could be the kidneys and that’s called general Wegener’s granulomatosis. But it was quite a long diagnosis period. Well I’m saying long – it was three months. But when I do look at the complications of the illness and how difficult it was to detect I think really the consultant did extremely well. I’ve heard since of patients who’ve taken a year to be diagnosed with this illness – so it was quick. He had a very good team. I was allocated a Macmillan nurse, I soon built up relationships with the phlebotomist with taking bloods, at that time it was on a weekly basis and I was seeing the pharmacist, all these health contacts, the radiographer. It was a very good team and I think that was important because I needed the confidence to wade through all the tests that were ahead of me. Some were more invasive than others and in some cases it was bloods, but it was also x-rays and biopsies and the more invasive it was, I felt I had no fear really going into these procedures but the confidence I had in the specialist did waylay a lot of my fears and worries

And it sounds like the fact that everyone was working as a team

Yes, it was collaboration and very good dialogue between primary and secondary care. The GP was always well up to speed with what was happening. And when I needed a referral into the mental health side (my mother died in the middle of my having the illness), which I’ll talk about a little bit later on, so I did need a referral for treatment of depression and the Macmillan nurse was a key player. The care spanned across different hospital sites, probably 15 mile apart so I think, when that happens, the collaboration’s really important. And I have to say that the specialist didn’t hesitate in referring me to a clinical psychologist for some psychotherapy. And that was a turning point for me as well. Having that care of both the physical illness and the mental health side, which was depression, brought about by bereavement but also brought about by the physical illness in that I had to come to terms with suddenly being quite an ill person after always being very healthy. So that’s basically what happened.

It sounds like you know what worked well for you then was the fact that people were anticipating what you needed, along with you, rather than you being sort of left? Yeah?

Yes, I think that’s right. the specialist he was the one who did spot that I was very, very down and it wasn’t doing me any favours with the physical illness. So it was immediate, he just said ‘yes, a referral’ and I got that appointment quite quickly with the clinical psychologist and she was very pivotal in my journey of recovery and building a new life, living on my own all of a sudden and getting back into the workplace. So she was very, very important as was the Macmillan nurse. There was a lot of reassurance coming from both Macmillan nurses, there were two and I got to know both of them. But they were very good from a reassurance point of view and occasions when I needed to ring up. And it was obviously harder to access the specialist although I have to say his PA was wonderful when I did need to find out perhaps the result of a blood test or the result of a biopsy. But yes, the Macmillan nurse was really a key player in the treatment. And to jump now to what happened with my mother, it was incredible really that we both fell ill at exactly the same time

So how long had you been ill before your Mam was ill?

Well it might have been one of these situations that because I was caring for my mother for quite a long time, and I do wonder looking back if that put me in jeopardy really. But I was working full time and I was looking after me mother and I could feel meself really going downhill but just assumed it was stress and feeling a bit off. And the symptoms of my illness were so gradual at first and then all of a sudden there was quite a severe attack. But I do wonder quite, you know, what the carer role that I was undertaking, what part that took in me becoming ill meself and I perhaps should have asked for more support; contacted social services and got more help. It might have well been available but there was an independent streak to me that I was trying to handle things within the family really.
So my mother had arthritis and a lot of back pain and in hindsight I think that masked the real problem that she did have which was eventually diagnosed as cancer. It was Non Hodgkin’s Lymphoma of the spinal cord. And I think I had put too much faith into some of the tests that me mother had and a lot of that might have been due to the way my illness had progressed and that when I did have x-rays, there was a result. When my mother had an x-ray it was clear, apart from the arthritis but, there was nothing showed up on that x-ray and I think I did place an awful lot of faith in that test. And I think my mother did as well. There was a sigh of relief ‘oh there’s nothing there. The x-ray’s clear’. Little did we know at the time that we should have pressed for a scan because my mother’s pain did get worse and worse and she started to be quite down and didn’t want visitors any more. Well she’d always been very sociable, so there were signs that she was more poorly than perhaps we all knew. But of course it’s seeing those signs for what they are. It’s easy to look back and recognise now but, at the time, we were very much fighting fires in that I was trying to get on top of my illness. We were both having appointments, our files were getting thicker and thicker all the time and it was just getting so complicated. But our two illnesses did impact on each other I feel, looking back. It came to crisis point when one night my mother got up to go to bed, tried to get up and, just her legs had completely gone and she said ‘I’ve got no feeling’. We rang the doctor and they said they would come out the next morning which they did and we did wonder was this a stroke or something of that nature. We just didn’t, we didn’t link the back pain with the loss of use of the legs really at that point. And I almost had to carry her to bed that night and in the middle of the night I had to carry her to the toilet. It was obvious something really was serious. And the next day the GP did an immediate referral so my mother was admitted straight away and we saw a number of specialists that day; there was a lot of waiting round you know in the department but it was obvious they were going to keep her in really and do more tests. There were more x-rays and there was the scan which immediately revealed a tumour and we then had the journey
of moving from one hospital to the other. I think there was more investigating operation and then a referral to a bigger hospital a few miles away as she ended up in intensive care and that the actual care of her at that point, it was wonderful really. I remember some Philippino nurses, the care was just terrific you know and she got settled at that hospital and then we were to move again to a bigger hospital because by that time it was obvious she was going to need the oncology side. So, still we were very concerned but it wasn’t sort of really ringing alarm bells yet; when we got to the oncology, she started having radiotherapy and you did get the feeling that that was quite intensive, just the marks on her body when I went to visit her. I thought ‘oh this seems quite an intense treatment in the radiotherapy’. No one was really explaining.

Margaret’s Story Part Two

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It was perhaps a little bit before the days of formal care plans so there wasn’t much communication and to this day I’m not really sure exactly what my mother was told because she never used the word ‘cancer’. I think she knew she was seriously ill. There was some mental health problems as well with hallucinations and delusions and we couldn’t work out what was happening there. Was it suddenly that she’d got Alzheimer’s or senility or something on top of her illness? So there was a lot of questions there as to what was happening. But she did go downhill really, really quickly. You could see every day she was losing her appetite and having trouble sleeping and

So was she still in hospital at that point?

Yes. Yes, she never, ever came home after that. I think it was the third hospital, there was a fourth one to talk about a little bit later on, but the main treatment was at the third hospital and the oncology. She spoke extremely well of the palliative care specialist. I never got to meet him but I can only say that she did really bond with this man and she trusted him and there didn’t seem to be any problem. And the clinical nursing was excellent. She was kept clean and supervised and you know I didn’t have any problem. My big hurdle was communication. I just couldn’t get any answers at all as to what the real diagnosis was and what the prognosis was. You know were we to expect the worst? I just really didn’t know and the more I tried to speak to someone, it just seemed to completely elude me. And I knew there would be a Macmillan nurse attached to the ward, you know, a big cancer ward, but it was so busy it just seemed to be working flat out. It was Christmas time and that might be another factor that just, things that perhaps should have been in place, weren’t. So I did speak to the Macmillan nurse on one occasion, but I have to say that was prompted by my own Macmillan nurse at one appointment I turned up very, very distressed and she stepped in and she said ‘look, I’ll ring this other hospital, I will try and speak direct with the Macmillan nurse and I’ll try and get you an appointment’. So eventually that happened. But she did not really know an awful lot of history about me mam; I’d never met her before obviously and I felt she didn’t quite grasp the seriousness of our situation. But she listened and I still kept beavering away, trying to get answers. I think it was,

What kind of answers did you want? What kind of information?

I just wanted to know exactly what was happening; why was my mother having stomach and bowel problems when it was a tumour in the spinal cord. I didn’t understand that. I didn’t understand what was going on in her head with the mental health side, with hallucinations that could be delusional as well and it was quite distressing

So some explanation would have helped?

Yeah, yeah. And I didn’t know either what treatment options, if any, you know. And my mum did mention chemotherapy. She said ‘well I think I’m going to have chemotherapy’ but again it was very difficult to try and get the information

So it sounds like the information that was going to your mother wasn’t getting to you and because of what was happening to her, psychologically, you know you in a way, by rights, possibly should have been given that information?

I think I definitely should have because you couldn’t rely on what my mother was saying. You know the confusion. At times, I was asking other patients at the bed next door, and, you know ‘what’s happening?’

Just trying to seek information, yeah

And it was distressing. She had to have a hoist you know to take her from bed to toilet. It was very distressing the whole experience of it. One day, I mean the thing I was expecting was the specialist to call me in, and that never happened! I just thought well you know me mum seems to be getting more and more ill, surely he’ll ask to see me

Yeah, eventually

But it just wasn’t that way at all. It was me pushing. And they arranged a meeting with the sister and a doctor and meself. So we went into this room. I did know the sister by that time quite well and there was a junior doctor, very young, junior doctor but one I hadn’t met before. And she started to explain that the cancer hadn’t spread but the general health of my mother, she did have a lot of other complex problems with kidney and hypertension, diabetes, there was a whole host of you know, illnesses there. What she said was ‘well no the cancer hasn’t spread, but you must realise that what’s going on in your mother’s body – the effects are as if the cancer had spread’. So as I understood, blood supplies weren’t getting to bowel and

Quite low

Yes. So, they weren’t sure how long. They thought perhaps weeks. But then, just out of the blue there was a suggestion that my mother go to the community hospital which was very local to where I lived and at the time I did think ‘well, yeah, that might be a solution’. So this was the run up to Christmas and, when we got to the community hospital, our own GP was there so he welcomed us. That was fine. There were a lot of local staff as well who we knew so it was much more personal and it was very, very caring. But the nursing provided in the community hospital just wasn’t geared up for dealing with the very acute symptoms like me mother had. And on Boxing Day you could see there were real problems there. They managed to get her into a bath to make her a bit more comfortable. She was still having visitors at this point. Still sitting up and chatting but poorly. And I would go and I would find medication in the blankets, you know in the bed. I think that medication would be for pain relief. But I think as well it coincided exactly with my return to work. I’d been off for nine months but there was a little bit of pressure from my occupational health to get me back to work on a phased return. Just two or three days, so I was actually at work between Christmas and New Year when I got a call to say that the community hospital just couldn’t manage, she would have to go back to the oncology department of the bigger town hospital. And yes, they did that straight away but it was quite distressing, yet another move when her pain was increasing all the time. We got back and I have to say initially she was relieved, she did say ‘ah, I’m back, I’m pleased to see those nurses’. Whether those nurses were in fact pleased to see her I’m not sure – because I did feel with it being Christmas there was sort of an impetus to get beds empty and you know, whoever could go home, even for a weekend or whatever, you know to leave the hospital so and that’s when things really started to go wrong. I mean they’d already gone wrong with the misdiagnosis in the first place, but they really went wrong in palliative care. From a clinical point of view, I have to say it was efficient and everything was above board, everything, I could see they were writing down the treatment of the pain relief and my mother had always resisted taking morphine, I think at one point when she was at home I’d perhaps said to the GP or … ‘is this not a time now’ and me mother jumped down me throat, she really, I think there were a lot of myths from her old nursing days about the treatment of morphine. But at this stage when we did get
into palliative care, that’s what the treatment was and it was difficult to know when she was in pain, when she was agitated and when she was distressed and you couldn’t really differentiate. I do recall her coming round at one point and saying ‘Mum are you in pain?’ and she did manage to nod. But I think that was the only time that she was able to give me any signal as to whether it was pain or the other symptoms; breathlessness as well. And one of the worst things that happened was when my mother was put in a side room, right next to the nurse’s station. And as I passed one day, they probably didn’t even know I was there, they were all busy, but it was just before my mother sort of went into that semi-conscious state so there were incontinence problems, she was having to you know bleep them for support and I overhead one of the male nurses say ‘oh it’s …. again’ and it was if he was complaining about her, you know that he was sick of her, you know, sick of her calling and I did think ‘well, yes I’ve heard that’ but it could have been me mam, me mum could have heard it just the same and it was an unnecessary, careless, throwaway remark, possibly the way nurses do talk amongst themselves but absolutely essential that they don’t do it within earshot of patients and families. I never said anything, I don’t think I could have really, I just was sort of operating on a day to day basis and to have tackled that issue and said ‘look, that was wrong, please don’t react like that or make any remarks’ it would have helped someone else further down the line, who might, you know might happen to and he was quite judgemental this one nurse, I remember him commenting on the time I was spending there and it was a really difficult time. I just hoped that everybody

Margaret’s Story Part Three

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would understand that I’d just come out of recovery. I’d just really stopped the heavy medication that I was on and

So it was a sensitive time?

It was a very sensitive time but I when I did have the meeting with the sister and the junior doctor she did say to me ‘well the time that you can spend with your mam, looking at the sort of pain and distress she has; that’s going to be vital and it’s going to be an enormous help to us in monitoring’. And looking back, I think that placed quite a burden on me because I did feel as if I should be there all the time, 24 hours. I just had no way of knowing when she was going to come round and that I was going to have shoot away and try and get some injection or. She was on a syringe driver at that time as well and there were perhaps times when you weren’t sure whether to run and get help or just wait until she lost consciousness again. And I felt I could have done with a little bit more help and information on that because the question in my mind was ‘do I ask the nurse to give her an injection which might disturb her further or do I just let her go back into a sleep?’ Because nine times out of ten, by the time you’d rang for that injection…

Is the difficulty about the responsibility that you had? That you felt that you’d been given?

Yes I mean I did have that responsibility because I’d been a carer so long anyway and it was hard to let go of that role. But I did feel they’d put a little, a little bit of pressure on. They offered me a bed there, I can remember that but I ended up booking into ……….. so that I had a base. I was ringing home to friends and family but I was completely alone. The snow was thick, it was icy, the hospital was about 20 miles away and I was completely on my own at that point. But I do remember contacting my own specialist. I might have even had an appointment, a routine monitoring appointment so I did see him at this time. And I said, ‘I’ve got no background of this at all, I don’t know what to do? Should I be staying 24 hours?’ and he said ‘no, you can’t do that’. He said ‘the only way a family can manage that is if there’s siblings of four

Ye, if there’s more than one of you

And you take a six hour slot, and you can cover the 24 hours. But because me mum was so frail, I did think the end would be quick. I did miss out one thing, we did have our ‘I am dying’ moment which I don’t think everybody has and in some cases perhaps the patient doesn’t know. But there was one point where my mother did say ‘I think I’m dying’. And I had to kind of give her some hope although deep down I knew there wasn’t. There was part of her that grieved for herself and there didn’t seem to be any way of tackling that. You know I really didn’t know whether that came under the umbrella of depression or what it was but there didn’t seem to be any kind of support in that

For your mam you mean? For you mam realising it was the end? You didn’t feel that that was handled or kind of, you didn’t see what you expected to see to help her deal with it?

No, I still don’t know what the answer is for that and I do raise it in some of the patient circles I work in now. So that’s still something that I do think about

So in a way she had the fear and all the feelings and it was you to confide in?

Yeah but she also had the fear of leaving me on me own. Anyway, that’s how the palliative care spanned out and it went on, in my mind it went on a long time. It was nine days. And every day you went in you kept thinking ‘this will be it’ and it just kept being prolonged really

I think that’s the difficult part isn’t it? Of that, the end of that journey is that you can’t say exactly what day it’s going to be? And that is a difficult one.

No. I did need spiritual support as well and with it being Christmas, the hospital chaplain, you know the priest, vicar, there was no one there. And people did say to me ‘oh your mum will wait ‘til the vicar comes’. Eventually he did arrive and he was a great support he was.

So that, do you think that his role was about that containment – and about your mum’s fears and feelings?

Well, I felt that was more the counselling side of things and I didn’t know who took that role and I still don’t. I don’t know whether a good Macmillan nurse might you know? I don’t know

Yeah, do you think the priest offered that, in the end?

To me, but me mum was unconscious at that point, she never got

Oh right. So she never got that comfort?

No she didn’t she didn’t but he was a comfort to me and he also started me in the planning stage



The planning?

Yeah the funeral, yeah, yeah. By the time I left that hospital I knew the readings I was going to have for me mam and the hymns which, I knew what she wanted. I did have a really good idea what she wanted. But it seems awful to be planning that while she was still alive but I had to focus on something and he did give me that focus. Afterwards, I went through the practicalities and to friends and family it looked as if I was fine. I went to the GP and I started asking one or two questions about the misdiagnosis and I had suspected it was all about masking of symptoms, that the pain from the arthritis had masked the cancer pain. And I was perhaps naive in that I’d always thought there were safety nets in place that if, you know if doctors were collaborating, you know discussing a case that there would perhaps be a call for immediate referral when somebody was in really severe pain. So I didn’t really get any reassurances there. The GP said it was very unusual to contract that particular cancer at my mother’s age and that she’d been very unlucky. He then said ‘oh this might be a case we can talk about at our team meeting’.


And I felt that was said with a little bit of flippancy, you know, as if ‘oh well we can make a study of this in the hope that we don’t do it next time’ but I was left with feelings that I’d let me mum down. In that I’d never pressed for a scan when she was initially ill and I should have done. And that the other guilt was that I hadn’t been there all the time when, you know when it did get into end of life, I wasn’t there all the time because I didn’t feel I could sit with her. So there was guilt associated with that. And the memories are as vivid today as they were then and I can perhaps recall most of the detail of it and I’m trying to do that, something about that, to give something to other patients in whatever way I can from a patient safety perspective and it’s led me into the world of patient involvement.

Lynsey’s Story

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Ok Lynsey, yeah, I mean it’s absolutely brilliant that you’ve offered to do this for us and you asked if I would just kind of start you off really. And my understanding is that there’s a couple of particular things that you want to kind of talk about and one being the fact that you’re deaf and the other being the fact that you’ve got cancer. And I’m just wondering which one you’d like to start telling your story about?If you want to start from the beginning, it would probably be the deafness really. I was born deaf, I was dead when I was born due to lack of oxygen to the brain and it caused the deafness. I was about three year old before anybody took any notice and I got diagnosed with deafness and then I got my hearing aids and I went through school and I got bullied basically and stuff like that through being deaf, being called deaf lugs and it was quite hard really. But I did have a close friend who used to come into me lessons with me and so if I couldn’t lipread the teacher or hear her through the equipment I had properly, she would look at me and tell me what the teacher was saying and stuff. And then as I got older I got more embarrassed, embarrassed about being deaf, started like pulling me hair over me hearing aids and you know if I didn’t hear what anybody was saying I’d back out of the conversation, slink away and stuff like that. And I just wouldn’t go out socialising a lot because I thought if people knew I was deaf they wouldn’t want nowt to do with me, they’d pick on me basically. Then as I got into seniors I started mischievous and being kicked out of lessons deliberately because, for that reason, because I didn’t have the confidence so I thought if I got kicked out of the lessons and then I can’t bullied and nobody would find out I was deaf and stuff. Then there used to be a woman who came out every week to help with me speech and stuff like that. I started not wanting to see her anymore and just, you know, just all embarrassing stuff. So as I got older I started going out and I wouldn’t mix with new people who didn’t know me because like I say boyfriends I was more frightened of that if they found out I was deaf they wouldn’t want nothing to do with me and that. Then I heard about, when I was 20, I heard about cochlear implants to make you hear again sort of, so I went ahead and seen about that and I qualified for it. And when I was 21, I got the operation and for the first few months it was brilliant, I heard car engines, birds and you know, stuff I’d never heard before. It was magnificent, brilliant and then I started getting seizures. We didn’t know what was causing these seizures so I got put under mental health for a while and this went on for three and half year; throughout, my argument was it was only when I got the implant in this started. But a couple of people said it could be you know one of the electrodes hitting a nerve and then another one said it might be your tolerance can’t take it, but they would never like write it down on paper or anything. So I went to see a solicitor about it and in the end I’d had enough, I just said I’d just want the implant out and the doctor agreed to take the implant out within two weeks and I’ve never had another seizure since.But I had to, I lost a lot of my life for that because before the seizures I was doing driving lessons, sign language courses, hair and beauty and all different kind of courses because I was trying to get on, because I’ve always wanted to work with deaf children, that was me aim to aim for and I had to pack the lot up because of the seizures. And then just after the seizures stopped, I tried to get meself back on me feet again you know, start to get the confidence to go out again and stuff like that – I mean get it into my head I’m not going to have a fit and stuff, I started having problems with bleeding and that but I used to go abroad a lot but I used to take the pill and that stopping and starting so I wouldn’t have a period when I was on holiday so I just put it down to that and that was in the October time. And then over the Christmas, the January I started having dreams that I had cancer and then we went on a cruise at the end of January, beginning of February and I started noticing blood clots and you know stuff like that and when I come home I just decided to go and see a doctor who done some tests and stuff. It took a couple of weeks after that before they done a smear and then I got called straight back in and that’s when I found out I had cervical cancer.So, it was just, the morning before I found out about it I’d just been watching about Jade Goody on the tele and then to go and find out I had it meself, it didn’t quite sink in because I just started on rabbiting on about, I don’t even know what I was talking about. And the doctor said ‘do you understand what I’ve just said?’ and I said ‘oh yeah’ and just started talking about something completely different and it wasn’t until I got outside and then I looked at me sister, she looked at me and we just both burst out crying. And it was like, did we hear the right thing, you know.That sounds a really, really important point Lynsey that you, when you were in getting that information that it felt like, it felt like it wasn’t happening to you; it feels really important for people to know thatYeah. But the first thing that went through me mind though was to protect people like me husband now, he was my partner at the time, me mam, you know everybody who’s lost somebody due to cancer and I thought, well how am I going to protect them? And me mam’s best friend who just died, it was the day before her funeral when I found out and I was like ‘well I don’t want to tell me mam, because she’s got the funeral to go to’; but me sister, she wanted to tell her because she said if she finds out that she knew, then she’d get the blame for not telling her so it was just one of them situations, where we didn’t know what to do! But we did tell her but my main thing I just wanted to protect everybody and I just told everybody I was ok all the time and you know everything’s just, like I say; it was like it was happening to somebody else. I just didn’t know where I was or what I was doing. I felt sorry for this other person, but I didn’t feel sorry for me! Then if …….. was crying and I was more upset because he was upset than anything else ‘cos to me when a grown man cries, there’s something wrong! It could be any stranger crying if it’s a man I cry.
And after that I had to go and get some biopsies done and that. I had a holiday from my club booked two weeks prior to that and the doctor just said ‘cancel any holidays or any plans you’ve got for this year’. And so I just knew that was the answer for me and I don’t know, I just come out gobsmacked I think. One of me friends was with me and she was upset but I just couldn’t seem to cry or anything, like I say, it was going through me mind, ‘how am I going to tell me mam, how I am going to tell, you know, me husband’ I just wanted to protect everybody else.Then I told them obviously, lost the holiday, then I had a hysterectomy, no sorry I had the lymph nodes removed and then five days later I had the hysterectomy. Took a while to recover from that. Then I started getting like, allowing visitors, people I hadn’t seen in a long time and you know, it got me down a little bit because I thought ‘well they’re coming, they must be thinking – oh then she’s going to die, we best go and see her’ but I had no grudges against anybody, all I wanted was me immediate family from ……… side and from my side, just them, but nobody else. And we had to wait six weeks for a phone call to find out if the lymph nodes were positive to see if I needed chemo or radio and I was meeting this other girl in hospital at the same time and we were texting each other, we were waiting for the phone call which we’d taken up to ten o’clock on the night. Finally the phone goes, ………answered, got off the phone, said ‘one of your lymph nodes was positive so they’re going to give you chemo and radio’. I just felt sick at the thought of it because you know I’ve seen me aunty go through it and I seen what it done to her, the chemotherapy and not realising like there was a different type of chemotherapy I was going to get, but to go through more when I was done recovering basically and then when, on a Tuesday I used to have chemo and Monday and Friday, radio. There was another girl I got friends with, in chemotherapy and she seemed, you know, dead bubbly and like a fighter and I used to look and think ‘why don’t I feel like that?’ I was still exhausted off you know recovering from the operation itself. To me, it was too soon, really too soon because it was only like six weeks after the operations that I was going back to do this, I still couldn’t walk properly or anything. And then like she used to tell me, after her radio, she used to go shopping. Well, I used to fall asleep in the room, I couldn’t even, you know, do anything at all but when I asked the doctor why is she going shopping and I’m sat here falling asleep and I can barely move and he said ‘well everybody’s individual’. He said ‘don’t forget, you’ve had the operation, she hasn’t’. So she was getting internal radiotherapy afterwards because she didn’t have the hysterectomy so there’s just, everything just seemed to happen so fast and I was going there every day and me life was just going, I couldn’t plan anything, I couldn’t go nowhere, I was basically just sat there waiting and we had rubbish times, there was three o’clock for me appointment for me radio but sometimes we were sat there still until half past six because they were, you know would go right behind on the times and stuff. That was our life for five weeks.And then, just as I seemed to recover, I started getting pains in me legs which I got told was neuropathic pain due to the damage of the nerves and so much damage what the radiotherapy had done to my system, so I had to accept that. I started driving my car again and started getting back on track a little bit and seeing me granddad again and had a little bit of happiness and you know and then it wasn’t until I seen the doctor, the main doctor, ……… and he said ‘everything’s looking ok’ so that give me a little bit of peace, even though I still had all the side effects of the radiotherapy. Got Christmas over with and started being sick, badly, couldn’t keep water, couldn’t keep nothing down at all and I knew something wasn’t right and then the dreams came back again and I was sat up in a hospital bed writing letters, you know, it was just so, seemed so real and I was trying to tell him something’s wrong and you know your own body. It took til, I collapsed sorry on February 16th 2010, I’d been out for me nephew’s 18th. I’d only had a couple of bottles of alcopop because I knew the tablets I was on it was dangerous for me to drink. We went to a take away shop and the last thing I remember I was having a can of pop and that was it, the next thing I know I was in a hospital and wires and everything coming off me and ………. screaming. And he said ‘you collapsed and more or less went into a coma’ so me sugar levels and everything was all down, all low. They took me for scans and that, I was in and out of consciousness all night and I got kept in hospital for a few days and ………… came to see me.Then I got took back home and they changed me medication around and stuff but then I was just like getting dizzy spells and just, I was vomiting and it was like, just come out of nowhere. Anyway, ……. phoned the NHS again and they come out and me sugar levels and stuff were all dead low again so they phoned the hospital and lucky enough, ……… was on that day, she knows everything about me, she phoned and got me in ………. We got to ………, sat there for eight hours, I hadn’t seen a doctor, I said ‘I can’t stand it’ I was crying by then. I’d had no pain killers, no nothing. I said ‘I’m going home’ and walked out and it wasn’t until they realised that we were walking out and they said ‘oh doctor’s been round’. I said ‘a doctor hasn’t been round; we’ve been sat there for eight hours’. Anyway he finally come to see us, he said I was getting kept in and I was getting an x-ray and stuff but they put me on paracetamol, I was having morphine originally and they put me on paracetamol so I was doubled up in agony all night. Got the x-ray and then eight o’clock next morning ……… from Hartlepool was at me bed and then I knew then that there was something not right. He said ‘how do you feel about going in the hospice?’ I said ‘well I get my counselling there, it’s a nice place and peaceful you know, I like it’. So he said ‘right, there’s a bed there, can you get there?’ So I said ‘yeah me partner will take me’ and this is when I put in the hospice for the first time and I got told the cancer was back again.Then I got an appointment with ……… again, and he offered me 50/50 on radiotherapy but it had to be intense radiotherapy as well so I didn’t want to have it, I’ll admit I didn’t, I did it for everybody else. It’s the same as why I moved on; why I got on with me life was for other people. Nothing because of me because it wouldn’t have been me, I worry about other people you know, protect their feelings ‘cos me mum, to get through it, she’s really bad with her nerves, she turns to the drink so I had to protect her to protect everybody, so I got then about half way through me radio therapy, I was just laid in bed crying me eyes out, I said ‘I can’t do it, I don’t want to go back’ and then ……… was crying and he was basically on his hands and knees begging me to do it. But the state I was in I probably wouldn’t have lived another month if I hadn’t got it done and because of him I done it. This really did leave me in bad state afterwards, I was bleeding from me bowels and stuff like that and pain everywhere, it must just hit every nerve in me pelvic area.We had that, we had some, me friend done fund raising event for us and raised some money for us to go to Blackpool for a few days. You know after the treatment finished and stuff and we just got on with life basically, it was like ‘well where do we go from here?’ me Macmillan nurse was there helping ……… and ……… was counselling, which I looked forward to coming to me counselling lessons because you don’t feel like you’ve got anybody else to talk to without hurting them so I got everything off me chest to poor ………! Then just, I know I had all these problems but we just thought the cancer was at bay, that was the last I knew from me last scan. And then I was in and out of the hospice with sickness and stuff; then the last time I was in here, in the hospice, October, I had a CT scan and it showed that, I don’t know the exact word for it, but it showed that there was a bit of swelling on the kidney but nothing to worry about. That was October and then I had another scan on the 25th January this year, 2011 and from October to then, the kidney had enlarged, it was three times the size it should have been and the uterus was pressing on to the kidney and the tumour was pressing on to the uterus. The mass they recorded they didn’t know whether it was dead or whether it was active and I needed a stent in because it was causing a blockage and that was why I was getting so much pain. So I went on the 11th February at ………, got the stent in, but I’m still having problems now. Then I went for a PET scan which was basically to find out whether the cancer’s active or not but ……… said there was nothing else he could do, he didn’t have a magic wand and stuff. So I had the PET scan and I’ve just got me results the other day to say that the cancer is active and they’d be surprised if I live past this year. So we’ve got to live month by month, live each day as it comes.So my advice to anybody is to go and get a smear, really get a smear, don’t care what excuse you’ve got for it, it doesn’t hurt, it’s two minutes doing it, could save your life, it really can.You know it hit me really hard this year because I thought I’d been protecting family and everybody for the last two years and I’ve never once thought of meself in this and now I haven’t got long now, I’ve know I haven’t, you know, and everybody’s saying ‘oh you can do it, you’re a fighter’ and I screamed and shouted at them all, ‘you know you can’t expect me to fight this, this is the third year now, I’ve gone through it and all I’ve ever done is protect your feelings. What about my feelings? Nobody supported me!’ you know all I’ve, ‘cos you, it feels like sometimes people just want you, when they say ‘are you alright?’ they don’t really want to know if you’re alright, they just, you know, they don’t want to know, want your details and so you just say ‘oh yeah I’m alright’ and that’s it they just change the subject and go on about themselves or go on about something else so they think ‘well that’s all I want to know’ and they don’t really want to know if I’m alright. A handful of people, on one hand I’d say a few, very few people who will turn round and say ‘no really, are you alright? I want the truth’ to me and that’s it, but nobody else really asks. When I’ve been in hospital, I do realise the difference from being in the hospice and being in the hospital, it’s when the nurses come round they don’t seem to have the time to talk to you, they just come and give you your medication, they’re off to the next bed, the same as the doctors that come round on a morning, they have a look ‘oh yeah she’s alright’ or ‘give her this, give her that or discharge her’ and go on to the next person. Where in here, when they come in the hospice, come round and they sit and listen to you, they pull a chair up and listen to every single thing you’ve got to say and they give you straight answers. They don’t lie to you, they, you know they’re very, very honest with you. The nurses come in and they say like ‘do you want to talk?’ and they give you that chance to talk. They seem to have a nurse per room kind of thing to me, ‘cos you could sit there for a full hour with a nurse and they’ll still sit and listen, they don’t ignore you. And I think they should be trained in hospital to do the same as what they do in the hospice ‘cos I know, I’ve been in ………, I’ve been in ……… and I’ve been in the ………. ……… is a very good hospital, I don’t doubt that, that is a good hospital but the ……… and ……… they haven’t got the time of day for you; they haven’t even got the care in my eyes and I think everybody, like who’s involved in a patient, whether they’re social workers, counsellors or whatever they are, they should really sit and listen to the person and find out what’s wrong with them and what’s bothering them instead of sometimes they fob you off and just say ‘oh go and see a psychologist, they’ll sort you out’ you know and it’s not about psychology, it’s not about mental health half the time it’s about the physical side of it and the hurting and it really does hurt. I mean you get people coming out to your house and yes and they sit and you tell them what they want to know, they go and then you sit and cry your eyes out and you feel like you’ve got nobody at all. It’s a very lonely world when you’re living with cancer or deafness or whatever your illness is, you need somebody to sit and listen to you, you really do. Because otherwise, not mentally but physically the person can’t get through it, it wears them out, and they’ll just sit and think ‘well what’s the point in fighting something when nobody’s interested in it?’I mean I’ve feel like I’ve give up because, my reason being because I’ve fought this and I really have fought this with everything I have and now I’m tired, I’ve been in too much pain and I’ve never had a break from the pain. If I’d had like a week’s break from pain even, I would think that worth fighting for because I’m going to get a week’s break, but I haven’t had a break at all. But whatever happens it’s God’s will, in my eyes being a Christian, but I haven’t, if it wasn’t for the hospice I’d have give up a long time ago, I really would have. And I think people need to understand why the hospice needs the volunteers, the fund raising and everything because if there wasn’t this place to go into, then I feel sorry for the people who have to go to hospital and do it, I really do.It sounds incredibly important that people have the time for you and that you feel kind of understood and that kind of helps a little bit but I hear also you’re saying about the relentless nature of the pain that you’re in and that you’ve got to a point where it feels like it’s, enough’s enough and I know we’ve talked about dying, haven’t we Lynsey and it feels like as a Christian, that’s something that you’re not afraid of but there’s a process to go through and that’s a different thing isn’t it?

Yeah I’m not afraid of dying, I’m actually scared of the pain because I know the pain’s bad now and if it didn’t get controlled and like, like I say I am on a lot of medication, and nothing at the minute seems to be helping. I know it’s got to get worse as well because of the type of cancer I’ve got as well. I mean when I had the intense radiotherapy last year it was to kill that lymph node and it still didn’t kill it; it was still causing all these problems. I mean I’ve got it in black and white in writing I mean I got it one of the doctors who wrote it, one of the other doctors that sent me a copy and it’s just sad, it really is. I mean you’ve got your family there yeah but you’re trying to, I don’t know, you don’t want them upset because that upsets you more so, and you find out who your family and your friends are, you know they just (inaudible) anyway but that’s why it’s so important to have like people like yourself or the Macmillan and whoever’s involved in your care, to sit and listen to you. You know and like I say about going in hospitals, the nurses should be made to sit and listen to the patient but if they don’t do that they’re obviously not in the job for the care are they? It’s really important to have somebody there, really it’s

That sounds like one of the most important things that you want people to know, that you know, about having time to listen to what you’re saying and in a way it might not have to be a long space of time but it’s just feeling that you’re heard

Yeah, that’s it, yeah. I’m glad like they’ve got, they’re doing the thing for young girls now, they have the chance of the injection to prevent them from getting cervical cancer. But I mean, I am a hypocrite to sit here and say you know, ‘please go and get a smear, get this done’ because I was one of them girls who said ‘oh I’m not going to get that done, what you don’t know won’t hurt you’ and I tell you what, it does hurt, it really does hurt. So you know, I would advise people to get it done. The main thing, it wasn’t the results that frightened me, it was because people say they’re going to use a clamp to open you up and that hurts and I was thinking ‘oh no, I can’t bear the thought of anybody’ not even the embarrassment but it was just because they said it hurts, but it just put me off and there was one time I did go, I’d been watching Coronation Street and Alma had died of cervical cancer on it, and I turned up and then I was having me period when I got there, I didn’t realise ‘til I got there and they said ‘oh you’re bleeding, we can’t do it’. But me doctor’s, I won’t name it, that I was in at the time, they never ever sent back for me, I’d had a miscarriage and normally once you’ve been pregnant don’t they, you have to go for one and they never ever sent for me and then I changed doctors. About four year ago, I changed doctors and ……… he’s in ……… now and they kept sending me a letter every other week, you must come for a smear test you know and I kept ripping them up and then in the end, with the problems I went anyway. Even when I went to see the doctor I used to lie and say ‘oh yeah I’ve got an appointment’ and I never but they did send for you and that’s another thing, it’s important that the doctors do send for the girls, keep writing them, even threaten them like you’ll be struck off if you don’t come for, you know, anything that can save lives. So ….

It feels like, that’s amazing Lynsey, you know it feels really lovely to have heard because obviously we’ve met a lot and we talk about certain things but just to hear your story has just been wonderful and you’ve brought up loads of really important things about what’s helpful and what’s not and you know kind of advice to people and you know there’s lots of little gems in there I think that is going to be really, really helpful. I don’t know whether, you know there’s anything else from your perspective ……… or anything else that Lynsey’s thinking that I want to include in terms of what’s helpful, what’s not, bearing in mind you know the kind of people that are going to listen to this.

Yes it’s mostly hospital staff and hospice staff that you worked with isn’t it. Have you had any contact with any other services?

Recently social services have got involved now they’re helping, they’ve got on to me landlord, I’ve just moved in with me husband so normally you have to be living there for 12 months to become a tenant but they’re aware of me situation and so they’ve basically got me on the tenancies thing and they’re getting me a door, you know electric door so I can buzz people in with me being upstairs I don’t even, although I’ve got me stairlift, it’s saves me going up and down. But with me being deaf, I still won’t know who it was so I can’t buzz them in so they’re getting the one with the CCTV, we’re still awaiting for that and they also, there’ll be like a watch where, and a vibrating light if somebody’s at the door or the phone goes or the smoke alarm, telling me which one’s going off. So that has to come to a £1000 that’s all they’ll provide; the only thing that I’m having problems with at the minute, I can’t get in the bath even with me bath chair, it’s causing a lot of pain due to me legs and stuff but I’ve tried it and it really is painful so I’m having to get a washdown stood up. They’ve given me a chair now, like me sister give me a washdown and I’m having problems trying to get a shower off somebody and nobody will provide it so, ‘cos there’s no money anywhere so now I’m having problems with that and the only way I can do it is try asking round the family which, they probably wouldn’t raise the money, to try and save some money to get a shower ‘cos I can’t afford one, but …. and it is a big problem at the minute

it’s those things that maybe I would take for granted that I can do every day like look after myself and have a shower, I get in and out of the bath and have a shower that make a huge difference, doesn’t it Lynsey, to just feeling on a day to day basis that you’re getting on with life?

Well I just tie me hair back ‘cos obviously it’s greasy it’s hard to get it washed, the only good thing is when I was in here there was a shower and I was having one, it did make me feel that little bit better being clean, you know even getting a wash down you still don’t feel, you know clean, clean enough so … the shower, I’ve never liked showers anyway, I’ve always loved me baths and I really do miss me baths but when I was in Scotland I was thinking, everywhere, everytime we’ve gone on holiday there’s always been a shower ‘cos I’ve been disappointed not having a bath. So this time there was bath, but it had a shower head over, but that’s still no good ‘cos I can’t get in and out of the bath. So what I’m always having to do is go over the swimming pool and use their shower but I’m still, the bikini on, cossie on so I’m still like not getting washed properly you know in the private parts so …. I think there should be able to be somebody who could fund for things like this and I mean if I could get one I would obviously have to get in touch with the ……… and ask them for permission to take their bath out and put a shower in ‘cos ……… son-in-law, three of them believe or not are all plumbers so there’s not a problem getting it in, it’s getting the shower and the tiles, that’s the problem. So …. but just have to wait and see. I mean I did see the OT and she did say ‘well even’; I said if we could come up with, ‘you could tell me how much it’s going to be and I can try and raise that money’ and she said ‘well it will take months anyway’. I said so you’re saying basically months I haven’t got, but I’ve got an Argos that I’ve seen, just the cheapest, the tray and the shower and I didn’t realise you’d need a water thingy you know, but if I could just get the price and then I’d know how much I’d need to try and raise for a shower. So, it does, like I say, it will help and I’d be able to, with me chair, be able to go in myself if I want to, it’s only if I need me hair washing or something, need someone in probably to wash me back, but just say one night I’d just fancied a quick shower just to warm me up or whatever put me pyjamas on. You know it would be nice to do something for yourself for once, without having to depend on somebody else.

I think that’s one of the important things isn’t it Lynsey, because I know you’ve said before that quite understandably, your husband and your close family are concerned about you so you feel like you don’t get, you’ve lost all your independence and sometimes you just crave to be able to do something for you.

I mean ……… won’t leave me on me own anytime now so that’s that bit gone now. I mean I’ve lost me car, that was me independence, me car. ……… gets upset because like, coming here for example, I have to stop him doing whatever he’s doing to come and drop me off, two minutes away. Where if I had me own car, I could do it myself, so you know. He says oh no he says he doesn’t mind and that but then if he can’t really, if he’s got a doctor’s appointment or something, and he really can’t bring me or pick me then I’m having to depend on somebody else because he won’t leave me, he won’t let me get a taxi on me own or anything like that. He needs to make sure that somebody’s going to be with me otherwise he’s going to cancel his appointments. I mean he has a lot of health problems himself just so I’m looked after and that upsets me because I think ‘well his health is important as well’. He has COPD hypertension and all that; he’s got problems with his feet and stuff like that, arthritis, diabetes, angina and I think ‘well, you know you’ve got to look after yourself as well’ but he’s putting me first. But I suppose if it was the other way round I would do the same. I even said the other day ‘I think I’m going to save and try and hire a car for the day just to have a drive about’. There again if I got pulled I would get me licence took off me because of the drugs I’m taking, I shouldn’t be driving. I’m a danger to meself and others, so

You can’t win can you?

It does take away all your independence and everything. I mean I wouldn’t have thought if somebody told me ten year ago, your sister’s going to be washing you down and you know seeing you naked basically, I’d laugh in their face because I, ever since I can remember being little, I’ve always been a private person, I’m really embarrassed as well you know, I wouldn’t let anybody see me get changed or anything. Where me friend used to get changed in front of me and I used to turn round and think ‘eeh what’s she doing, she’s a lesbian or something like that, you know I just, I was always a private and close person but when you’re poorly, you’re not bothered who sees you I don’t think. And you know, even if, I think me brother, if it got to no choice and me brother had to do it, I don’t think I’d be bothered because when you’re poorly you can’t be bothered. If I was on one of me good days and happy and stuff, I’d say ‘no you’re not watching me ………’ you know, but it’s very rare you get them good days now. There’s a lot, we’re doing a lot of crying and it’s more upsetting I think, it’s hit us more harder now what’s happening, even before we found out that I, they’d be surprised if I see this year out. And we’ve found it more harder to share than what we’ve found it any other time and I think it’s been the burden of protecting others

So it feels like you’ve got to, ‘cos you very clearly said initially it was almost like it was happening to somebody else and then you were more concerned about protecting other people and that in way stopped you from taking it in and it feels like now, you know, through all this time, this is the time where you and ……… particularly have kind of, the reality is, is hitting you now and so you’ve been more, more emotional about it and you know kind of realistic in a way about it as well

It’s like the other day ……… said even though it’s hard, we’ve got to, you know we’re going to have to do it; you know the funeral’s already booked in, we’ve already done that a couple of year ago, but now we’ve got to go and pick the plot you know. I’m supposed to do it, if I’d have done it last year I’d have been fine, because I was fine about it all, where now it’s going to be harder to do it now, we’ve got it booked, it needs to be done. And if I want something I want on then I’ve got to go and get all that written and you know stuff like that and it is like, there’s jewellery and stuff that I want to take with me and I was thinking the scan was more important because that’s me baby but ………, ‘cos I have a thing like I always say ‘you know they take the jewellery off you, you know they pinch it’ .. there’s going to be an open coffin so ……… just going to come in at the end before they shut it and put the jewellery on me and then shut the coffin so

So is that particularly sentimental jewellery Lynsey that you want?

……… bought me, yeah and he buys me all the charms for it and there’s only him that buys them so, but me wedding rings, I’ve got a long necklace which is unisex, I want ……… to have them round his neck, so keep them himself. But the other stuff, there isn’t like much more left because I handed stuff into the hospice and I’ve sold stuff towards a holiday and stuff last year and there’s nowt really left really. But like I said to him, last time, stop buying clothes and I sort my clothes out ‘cos anything clothes or anything like that it’s all going to the hospice. But I have loads of teddies, as you know I’ve collected (inaudible) and stuff and they’re going to the … Hospice. So we know exactly where’s going where but that’s down to ……… when he’s ready to part with them.

You’ve done a lot of planning haven’t you? And as you say, last year you were able to be very clear and plan your funeral and what you want and pay for it as well, but it’s like now you’re fine tuning that somehow and it feels like it’s harder because the reality’s hitting home more and

We’ve lost a lot of things as well and the main thing, we had a cruise a few year ago, before I found out that I had cancer then as you know I wanted that one last cruise, didn’t I, last year? And then we found out the cancer was back so we had to cancel it and I lost all of my money, that was the last of our savings so me brother done a boxing fund raising do which I got some money and the hospice got some money, mine was to pay for me funeral, the rest went to the hospice and like, just like you know I can’t I know we’re never ever going to be able to go on that cruise and do that last thing because I know there’s no way the money can come from anywhere, we can’t even afford a shower never mind a cruise, so

And you got married

My main thing to go on to people, if you want to get married, if you want to have children, whatever your plans are for the future, don’t wait for the future, do it now because you never know what’s round the corner. Are there any more questions you want to ask me? I’m stuck now

You were saying about getting married

Yes, Lynsey’s just got married

Yeah I got married, it was a secret wedding. It was me mam and dad and his three daughters there. It was nice, we both went in as if we weren’t bothered, soon as they started their talking and that we both burst out crying because the more it meant to us, more than anything. We even had the registrar crying because he knew our situation as well

That was quite recently then Lynsey, was it? Quite recently

Oh yeah

In January

January the 6th, yeah. What happened, when we booked it three weeks before, I’d ended up in, we had to go down, you know show your passport and stuff the next day, but I don’t know, they phoned an ambulance came for me anyway, it came to take me to ……… because I’d had really bad stomach pain and it had been all day. They took me to ……… so ……… tried going down with all the ID and that and they said ‘oh no we can’t accept that’ so he said ‘we’ll try and fetch it down tomorrow’ but I got kept me in bed so what I had to do was make, make out I was going for a coffee and I flew down to the registry office and the registrar had got snowed in, so they said if you don’t get it done tomorrow you’re going to lose your day. I said ‘well that’s your fault not mine’; they said it didn’t matter because that’s the way it works on the computer but luckily enough that day I got discharged and we finally got there. Because we wanted it, 6 is me favourite number, it was me Nana’s birthday and it’s the last day of Christmas so it was still kind of involved Christmas as well, ‘cos we did want to try and get married over Christmas but that was it, it ended up perfect anyway.

There is something I have to tell you


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“……… there is something I have to tell you, I am having to give you my one months notice”. Words that a person who receives care can dread. I have had these words said to me, by carers, over the 5 years that I have employed my own staff, some effected me emotionally, some not. But this month three of my care team have said these words; not because they don’t like the job here with me because they do, but their lives have moved on and so must they. A sad fact that I must accept but as this article will show, easy to say but hard to do. So who are the three I am talking about? All three of them are, were, part of my care team for a very long time, J 1 year, MH 5 years and MF who is only reducing her nights from 2 nights to 1, 15 years.Over the 25 years I have received care, mainly through social services and care companies, the leaving/changing of staff has never been an issue, why? Because you very rarely saw the same carer more than twice in a row, if you were lucky. As I did not like this state of affairs, and because the government brought in Direct Payments giving service users a greater control over their care, five years ago I decided to take the Direct Payment/Personal Budget route and employ my own staff, some 9 in all, – Due to the extent of my disability, I have severe Rheumatoid Arthritis meaning I have great human and wheelchair dependency hence the number of part time staff I employ – while I would never admit it, staff changes did and do effect me but no more than it is right now.While I and my carers always try to keep a professional line between us, that line when someone has been with you a long time, tends to gets fudged and try as I do, I still find myself seeing them as a carer cum friend and not just a carer. With this in mind and the fact that two carers are leaving and one reducing her hours I would like to share with you the mental and emotional journey I am now on.

Talking to anyone about ones true emotions on any subject is not always easy, especially to strangers on a Talking Health Matters web site, but I will give it a try; perhaps some of you have had similar experiences.

I was expecting MH who has worked with me for 5 years this month, to say she was giving in her notice because for the past year MH and her hubby have been going through all the hoops, and believe me the authorities leave no stone unturned so there are many, many hoops to jump through, to become foster parents and last week it was confirmed that they had been accepted. I was thrilled for them both and was already emotionally ready for her to leave. Her job along with MF, who is dropping a night, was put in the job section of the local newspaper, and I am, as I write, waiting for returned application forms. A situation I have found myself in a few times since 2006 so why are things different this time, the answer is J and her dog Sally.

J has been with me, as I said just over a year, and does my weekend shift 10 am to 6 pm. I really thought that we would grow old together, but that now will not be happening. J is a great cook, she used to be a chef on the rigs but left to get married and bring up her family. Her other job is working with people with learning difficulties which she loves, and the organisation that she works for has offered her a position which includes her love of cooking that J just will and could not turn down. If all the plans in regards to this position fall into place today, I will be getting her months notice on Saturday. J, along with her dog and mine, often go out at weekends for long walks along our coastline. This I will miss terribly so will Jack and Molly my two Jack Russell’s. There are lots of other things I shall miss about J , her very dry sense of humour, nipping to the bottom of my garden for a quick ‘tab’, her Scottish accent, and most of all J and Sally, who has a unique bark to get your attention and their being themselves.

J told me about her decision and the reasons for it on the Saturday and on the Sunday while I was in church, I found myself fighting back tears as the reality hit me that my friend cum carer was leaving. That fact made me realise that no matter how hard I try not to get close to my care team, in some cases I just fail, as in the case with J. I now have to face the prospect of trying to fill her post, easy to fill the post but hard to find anyone like her and Sally. So why this narrative?

I realised that I may not be alone in feeling as I do when a member of my care team leaves. It also appears no one in authority has ever given it a thought about how some who are dependent on the people who care for them feels when that person leaves. My care team are the most important people in my life; I have no immediate family, and friends not connected with my care you could count on one hand. My care team share with me my good and bad days. They share with me and make it possible for me to live my life as I wish to, whether that is driving my power chair from Lands End to John o’Groats, working as a volunteer with McMillian Cancer Support, feeding me, or even taking me to the loo, someone from my care team is there with me. I slowly build up a trust with them, I hear about their lives and they share mine. I share with them, some more than others, my secrets, fears and joys, then that person is no longer there as in the case of J and a few others. To me this whole situation is like living through bereavement but without the emotional support you need. I am lucky this time as there is one particular carer who is a third year counselling student and whom I can talk to, but I have just learned that due to an accident she is off sick for 6 weeks. I feel a lot of phone calls will be going in her direction as this time I work my way through how I feel.

I have been asked, for this narrative, to log what happens to me over the next few weeks, this I will be doing. At this precise moment I am waiting for a text that will say if or when J is leaving. I should know early evening. Who knows I may be lucky it may not be until the New Year.

It is 5.30, time for Neighbours on Channel 5 and I am waiting for J’s text. I am feeling unsettled and every time I get a text I jump because I think it is J… Must be like waiting for any verdict especially when that verdict will have an impact on your life.

At 7 pm my text went off, no it was not J it was someone answering my add in the paper sending me her postal address. Details will be put in the post tomorrow. My waiting goes on.

It’s Thursday 3 pm and this morning I received the text from J, I will not revel the contents but will tell you that it is official, on Saturday J will be formally handing in her notice. I have so many emotions churning around in my mind that half of me wants to cry, the other half is excited that a new era is about to start in my life. New carer staff, new who knows?

Everyone is telling me that everything happens for a reason. How many times have we heard that old cliché? How many times has it proven to be true? When one door closed another opens. We have all heard that one. I think I am getting to old for changes in my life, but saying that, I have three new volunteering projects that I am hoping to get involved in. I have attended training sessions for two of the project and the third I will attend in December. Yet another case of opening a door and seeing what is the other side, but you know what I had started to open these doors before J told me her news. I just want things to stay as they are but I have no control over the situation. I am feeling helpless and if I dare say the D word, Disabled.

My staff are free to leave when ever they want, and do. But with employment law as it stands, I cannot ask someone after one year of working with me, to leave just because we do not get on or I don’t like them.

I feel very lonely at the moment. I feel I have lost control of my life. Changes are being made that I don’t want to happen. J, I know you will read this narrative and I want you to know that you and Sally will be missed terrible. I know we all say we can keep in touch, stay friends but that will very probably not happen.

Right now I just need a very big hugggggggg. So not going to happen. Maybe my next piece should be on the subject of touch and what it feels like not to have it, unless of course someone is doing my personal care. A different touch to what I am talking about, but I think you know that.

So what next.. Before Saturday, when J returns to work, I will put the add in the carer required column of the job section of the local newspaper for J job, that will go out next Thursday. I will get about 25 replies and information packs will be sent out. If I am lucky 20 will be returned and I will offer them an interview but only about 6 will turn up. 2 will make it to my home and one will be offered the job on a trial of 4 months.

As regards J I know what the next four weeks are going to be like with J. We will both try and carry on as if all things are normal. This Saturday J will come into work. I shall tell her that I am happy for her, we shall talk about her new job and the dogs will chase each other around the house. The kettle will be put on coffee. I will then be taken in the garden if it is not raining, coffee and tabs for J. I have this Saturday a plan, best to get out and about. Why, for me to get away from the reality I am now in. We are going down to the beach, meet up with B, run the dogs, have lunch of fish and chips and talk. I need some talk time with B by myself, but I am not too sure when that will happen on Saturday, if it happens.

As I am been honest with this web site, it is times like these that I just wish it would all stop. That I could just say enough is enough. No more social services, no more fear of my care package been cut. I have this fear at the back of my head all of the time. No more dependency on others to enable me to do things from opening my gate to let me out, to feeding me, and to wiping my bottom. I think you know what I mean.

I know that I am very lucky. I have a nice house, people around me that care for me. I am in very good health, but I am not free. I would give this all up to be able to put a pack on my back, Jack and Molly on their leads, just close my door and go where the wind blows. To be free again from my dependency on people. But that is not going to happen unless there is such a person as a Fairy Good Mother.

7.00 pm Thursday. T has also given her notice. T only did 3 hours per week for me and has now found a full time job. T will be missed very much. This all goes to show me how reliant I am, a reliance I hate, on total strangers to run my life. Total strangers whom I have only meet because of an advert in the newspaper. If I was disabled as I am with a hubby and family around I am sure I would feel a lot different. Love of a fellow human being must help someone in my position to feel wanted and valued as a human being. This is a feeling I am not getting right now.

Monday, I need a hug. I can tell you, I am in an emotional mess with J leaving. This forming a relationship and trust with someone and their dog just to have it broken is a killer. From the short list (the two jobs were advertised) only 2 said they were still interested. The two I would think could take J place have said no. It is like having any relationship broken up; it is like having a friend saying they do not want to play with you anymore. It is a bereavment. I must try harder not too get close to my carers, Keep that professional line. How long can I keep this up time after time?

I know that I will work my way though all the feelings, good and bad, my care team will see to that. I know that tears will be shed when J and Sally leave for the last time, but there is still a lot to do before then. I know that a suitable person will take their place in my care team, but that will take time.

Final update, 3 weeks later (Christmas approaching), J has now left the building. We are to stay in contact, just hope that is so. We said no goodbyes, no tears, but I was fighting back the tears all day. The final lift in the hoist, the final coffee, meal, that sort of thing. I shall miss J and her dog immensely but have the New Year to look forward in a few days. I have signed on 2 new staff, and there are a number of new projects for me to be involved with but these are all material things, it is the relationship that we have with people that is the most important thing, well I think so.

All good narratives should finish on a positive note and this one is no exception. So to finish this narrative, I would just like to raise my glass to the New Year and bring on all that it holds no matter what it is. Main thing is to stay positive, stay focus and enjoy the moment. This I fully intend to do.

I hope this narrative has been of some help to you. That someone in authority will realise that perhaps they should look into how they can support people, if they need it, whose carers have moved on.


Journey through Cancer

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Right, I’ve been asked to discuss my journey of cancer which was four years ago and had both good and bad experiences with this. I think it’s important to remember that when you’re first diagnosed with cancer, that in my case, I was a happy, fit person and this was a complete shock to me and to my family. I did have to have surgery; I had to have chemotherapy, radiotherapy. So and I think it’s worth mentioning that throughout all of those three stages, everybody was so kind, so professional, treat me with respect and dignity the whole, everybody there.

When I became ill with some of the chemotherapy drugs which was life threatening and I was in hospital for three weeks; that’s when I think everything sort of went wrong. And I think it was the nursing staff that didn’t really give the care that I should have been having. Medical professionals were excellent, the other ancillary staff they were very good, physiotherapist was very good, she was there when I needed her, she helped me to get on my feet, she helped me to work my way up some stairs so I could get home. But the care itself on the ward I think was absolutely dreadful. I don’t think nurses looked at the person in the bed as a person. I was looked on as somebody with cancer, who was ill, and given, task orientated care was given but not person- centred care. And I do think nowadays that students are being taught to look at people as people not as an illness and to centre the care round the person and the family, not the disease. And I don’t think that happened with me.

I think I was ill, I was in a side ward. I was left on my own for most of the time unless my family or friends were there. I was actually not given, as far as I can remember, I know I was ill and I don’t remember all of it; but my family do and my friends do and they tell me how appalling it was. They would have to come in and wash me, clean my teeth, change my nightie, do the basic, basic nursing skills. And I don’t think that is right in this day and age. Other nurses would come and they’d change syringe drivers, change drips, change catheters, change other bits and bobs that I had all over the place. But nobody would actually ever really actually talk to me. They wouldn’t know, they knew I was married but I doubt that they knew anything else about me. And I think you need to look at patients as people, people who’ve got their own, they’re all individual, we’ve all got our own unique life history and we all have expectations of good care. And I don’t think it’s always there, it certainly wasn’t on that ward.

Yeah, when I was diagnosed, as I said before, I didn’t think, I wasn’t really unduly worried. I had had a history of lumps that weren’t malignant so it didn’t really bother me too much or my husband. But I was actually told on my own and he was in the waiting room. And that really upset him quite badly and he still today, thinks it’s totally wrong and there should always be two people, you know, a family member there when you’re given the news. But other than that, all the treatment from that end was fine.

I did know that when I started chemotherapy, that my hair, I would lose my hair. And I wasn’t too bothered about it, I thought ‘oh well, you know, I’ll lose it but it will come back’. But I wasn’t prepared for the devastation I felt when you know, I’d go in the shower and my hair would fall out and you know wake up in the morning and it’s all in the bed. And it’s really, really upsetting and it doesn’t come out nicely, it comes out in clumps so you’re left with bald patches over your head. I had to go and be fitted for a wig, which I found (while I still had my hair) and I found that quite upsetting as well. The fact that they put like a rubber thing on your head so you look bald before you start trying on wigs and that really upset me. I don’t think I’m a vain person but I didn’t like the thought of not having any hair. The, with the treatment I think I coped fairly well with the IV chemotherapy. But when I started the oral chemotherapy that’s when things went wrong. That’s when you know the side effects were horrendous. The good thing about the hospital I was attending was they did have open access to the ward, anytime, 24 hours a day and if had a problem I didn’t need to go through the GP or outpatients or casualty. I could just immediately go to the ward and I’d be attended to. Which I needed to do on several occasions and was always pleased that that service was there. There was always a doctor on hand, my notes were there, they dealt with the problem and I went home. Until the last episode when I was in for the three weeks. Now I know there were nurses on the ward who were caring but were leaving, actually leaving the job because they weren’t able to do hands-on care. And I think that’s a sad reflection of that ward. You know, nurses go into nursing because they want to care for people, they want to look after them. Or, I believe that’s what nurses should do but that really wasn’t happening. Anything else?

Can you give some examples?

Well, as I said before, my family, friends used to come in and wash me, clean my teeth, change my nightie, change the bed or whatever. They would help me. I had a problem getting in and out of the bed. There were other things, little things and you know people don’t listen to you. I like to sleep with the window open all the time and I had to, it was a battle to have the window open. Why? You know I can’t understand the logic in that. I was in a side ward, I couldn’t get to the toilet in the bathroom. So I demanded I had a commode by the side of the bed because I needed a commode because of my problem. And then it was commode is at the side where all my drips and everything was because it had to be – but the alarm was at the other side. So I would try and get myself out onto the commode, then I couldn’t ring anybody to get me back into bed because I just couldn’t, I couldn’t do it myself. The effort of getting out was enough but I had to do that or I’d have, you know, it would have been a disaster really. So it’s things like that and I think listening to what you want and I just … for me it didn’t happen. And I think that’s a sad reflection of the ward but I do think that possibly comes from the person who runs the ward rather than the nurses. You know they’ve got to follow what the ward sister or ward matron or whatever, says.

So how did that make you feel?

I just felt totally neglected. And my family felt as though I was neglected as well. And there’s lots and lots of anxieties around, when somebody’s ill, you know with your family, and as a person and a person who always been in control of my life, I suddenly wasn’t in control, I was totally out of control. I had to rely on other people and that’s not me. You know I’m always the one who does everything, so … and my family, my grandchildren, they all had their worries about it, you know the little ones didn’t like to see me with no hair. The older granddaughter worried that you know this could be hereditary and you know that it could be her in a few years’ time and you know you’ve got all those things to think about and help them with and try and make it easier for them and sometimes you know, inside you just want to curl up really sometimes.

And did anybody try and help you with those issues?

Just my family. Just my family really. Except that I also used to go to, for some alternative therapies and I used to have Reiki which used to help me. Sort of made me feel better, gave me a bit more, I don’t know, energy I think and that was after this episode in hospital. The consultant realised probably that I needed a bit, something extra to prepare me for radiotherapy which I still needed to have. It was suggested that I go and have some alternative treatment and Reiki was chosen which I was grateful for. And still, even to this day I still enjoy it.

That’s good

Yeah, yeah it still does me good

Did you have a MacMillan nurse?

No I didn’t

At all?

No I didn’t

Oh that was your choice was it?

That was my choice, yeah. And that wasn’t because I don’t agree with MacMillan nurses because I do. Professionally I was a MacMillan nurse – but I know some of my friends are all, well most of my friends are MacMillan nurses so I had a little gang of them around me so I didn’t need one professionally because I had them there to help and support me and actually in a few instances, actually pave the way for me a little bit, especially the day that I was discharged

So what happened on the day that you were discharged?

Well I decided and the consultant decided that probably it would be better if I went home for the weekend that I was off all my drips and I was starting to take a little bit of fluid and a little bit of breakfast I could have. So we decided it possibly would be better for me to get home for a few days. So, and I was to go. So it was explained that there was, you know this discharge lounge that I could go to and be there until I could be collected. They were told that my husband couldn’t come until six o’clock in the evening but I was out of that room by 11 o’clock – with Venflon still in, they hadn’t even taken them out – and was transported to the discharge lounge and for somebody who hadn’t been out of bed really very much in three weeks, to expect me to sit up for seven hours was you know, not right. Fortunately my colleague, ex colleague who worked as a MacMillan nurse in the hospital, she came to see me and saw to that – they did actually get me a bed. So that made it a bit easier until he could come and collect me and I did actually sleep for most of the day. I needed the bed but you know it was just like ‘well you’re going’, we’ll push you there, here’s your bags and left. And I don’t think that was good either.

No, whose responsibility do you think that was?

What the way

Sending you to the discharge lounge without

Well I think they needed my bed. I think instead of letting me stay on the ward until I could be, you know he could come and pick me up, they definitely needed the bed – because as I was being pushed out of the ward, there were chairs lined up, you know people waiting for beds. So I think they needed the bed. So, you know, and the discharge lounge was very nice, you know like a posh airport lounge – but no facilities to lie down. And there were a lot of poorly people in there as well, really poorly people waiting to be collected. I mean if I was being collected in an hour, that would have been ok. But you know when it was going to be six o’clock it was a long time to have to sit

And did you, you didn’t come back after that weekend?

No I didn’t come back. And I think everybody knew I wouldn’t come back. I think even the consultant, ‘You know’ she said ‘I knew you wouldn’t come back and you’d improve at home’ and really you know, I just took it easy and had, my husband was fantastic, my friends were fantastic and they really got me through that stage until I got stronger and then had to start again with radiotherapy

Yes, so did you have nursing at home during that period?

No, no, family, friends

But I suppose because you were a nurse, you were confident enough to do that weren’t you?

Yeah, yeah. But I’m a bit stubborn as well so. No I was fine. I mean I knew my limitations, I knew what I could do and what I couldn’t do and everybody else did as well. So they just let me go at my own pace and you know, and we got there. And here we are four years on, I’m still here to tell the tale so you know it was worth it in the end really even though it was so horrible at the time

So after you convalesced at home then you had another therapy didn’t you?

I had to have radiotherapy and that was 15 treatments of radiotherapy and the radiotherapy staff were excellent. You know they met you, they greeted you properly, they took you through to the department, they stayed with you, they asked how you were, dealt with, if there was a problem it was dealt with straight away and you had the same person throughout so I thought that was excellent as well.

On the ward, did you have a named nurse?

As far as I remember I didn’t have a named nurse. I did make a complaint one day when I was particularly, really, really upset about the lack of care. And the person in charge came to see me and asked about a named nurse and I, by then I was a bit more alert so I knew that people weren’t coming on a morning and saying ‘hi, I’m your named nurse’ so no it didn’t happen. The only time a named nurse, I did have a named nurse was the day I was being discharged when she came about 8 o’clock and said ‘I’m your named nurse’ and came with all my drugs and left them and said ‘I’ll see you later’ and I never saw her again, so no

So that didn’t work

So it didn’t work in my case. No, you know it may work with other people but it just didn’t work for me

And you say you made a complaint? Did things get better?

No, not really (laughter) no, it just continued. That’s why I think I needed to get home

Yes, yes.

And my consultant knew I needed to get home as well and I think she was aware of some of the, you know the lack of nursing care on the ward, didn’t actually say in words but you could tell she was aware of that so … But some nurses were good, I don’t say they were excellent but some were good but others it was just straight in, do the drip, in, change the catheter, in, do this, whatever and not really talk to you either and I think that’s – as a nurse who talks to people – I found that quite upsetting really

Yes. Cos you’re lying there for long periods of time aren’t you? Worrying I suppose about you know the results and how you’re recovering…..

Yeah, yeah I was yes. Well I think everybody didn’t expect me to come out of hospital and even now lots of my friends still say ‘God, I remember coming in and thinking I’m never going to see her again’. Or not even recognising me because you know I was so ill. Looked so different and no hair on my head and you know, said ‘God, we didn’t think it was you’ and … but so you know, I can’t remember all they can remember and I think maybe that’s just as well really. But I still think it wasn’t good and I do think nurses really should think about the person as a person and not an illness and talk to them and try and find out a little bit about them and you know, just don’t rush in and rush out. I know it’s easy for me to say that because I know the wards are busy but there’s still got to be some personal touch there. Yeah? You know some contact really, not ‘are you in pain? Here, I’ll give you this’ or ‘I’ve come to change your drip’. I mean that isn’t enough, not enough at all

So the good nurses were the ones that tried to help you emotionally really?

I don’t think any of them tried to help me emotionally to be honest. Not really, nobody really, not on the ward at all. And I had been on a clinical trial. And both my husband and I decided that enough was enough that I couldn’t take any more of that drug and fortunately the consultant agreed as well. But nobody’s ever asked me how I feel about that clinical trial being stopped. And I do think it’s a big issue for people. You know you’re taking these wonder drugs to try and cure you then suddenly, you know, you’ve got to stop it and it’s not replaced by another drug. It’s stopped. So it is a big, big issue and you know I think people should be sitting down and saying ‘well, how do you feel about this? Is there anything we can do or is there anything you’d like to ask or do you want to know how the trial’s progressing?’

You’ve never heard about what

I’m still on the trial, they’re still, I still have to fill in the questionnaires, they still ask me questions every time I go to the hospital but nobody is actually even now saying ‘oh well, how do you feel?’ you know? And I still would love to know the results of the trial when it’s complete but I’m not sure whether that actually does happen or not. You know if it was, if I was just one out of, I think I was, it wasn’t expected and I think I was unlucky really.

Did you know other people on the trial?

No, not on the trial I was on, no. I’d known other people in my professional life, who’d actually been on this drug and I wasn’t very happy about taking it because I knew one or two of them had had some quite serious side effects so I was a bit, you know, oh I’m not, I don’t really fancy this but I think I was unlucky to get the severity of the side effects that I did.

So what made you go on the trial then?

Well I think it’s trying to help other people, you know? I mean I, you know, treatments have come so far in a short time really and all that’s through clinical trials and research isn’t it? So if you can help, and if you can be part of a trial and try and help for other people then I think it’s well worth doing. I think if I became ill again and there was another clinical trial going and they said, I think I would possibly even do it again – but you know, touch wood. But you have no choice, I mean with the drugs, I mean at the time I said ‘oh I don’t really fancy this one.’ There are four arms to the trial and I would have chosen the other three rather than this one but it’s the computer picks you out – so you can’t do anything about it – so I wasn’t happy with it but, you know and it was proven to be true as well really.

So did you, you knew which arm of the trial you were on?

Yes, oh yes you’re told right from the beginning. You get all the information, you’re given a load of information and every time I went to the clinic then you’re seen by the clinical trial staff who ask, you know ask a lot of questions and you do a quality of life questionnaire every, I think it’s every year now. And I think I’m on that for like five years so, but I still think you know, there could be a little bit more thought for people

Yes, yes and have you managed to discuss coming off the trial with the clinical trial staff?

Well they knew I was coming off it because the consultant had told them that I was coming off it. I say I still see them but they’re not asking the question and I’m not going to ask them to ask it, am I? They should ask it!

Yes, yes

But I think I’m, I mean I’m not so bad about it really but I think there could be other people you know, with less knowledge than I have, who could be devastated by it.

By coming off the trial? In case…?

Yeah in case ‘oh this is going to start all over again’. I mean I just thought ‘well I’ve had the IV ones, I’m half way through this one but maybe that’s enough, you know that will help’ so, but I just think for other people they should be aware of that. I think of how people might feel about it.

So, we’ve talked about the effects on yourself and your family haven’t we? And you were saying that even your grandchildren found it really hard?

Hard, they did yes, yeah, yeah. They used to look at me and think, you know, like ‘have you got any hair Nana?’ (laugh) ‘No, do you want to have a look?’ ‘No, no, no’ you know they’d pull at the wig or the scarf but they would never ever, never wanted to see me until I was in hospital and then they came in and then that was it, I was there and that was it. So they had no choice. But they were fine after that, they were ok once they got used to it. But even now, they’re always sort of stroking my hair and saying ‘oh isn’t your hair lovely’ although it’s totally different, colour, different everything to what it was. Yeah (laugh)

And how did you get on with the wigs?

Hated it, I absolutely hated it. It was very, very nice, it was very like my own hairstyle, same colour. I felt I had a wig on. I felt cold, ‘cos it was winter time. And I just felt cold when I had it on. I didn’t like it. I tended to wear the scarves or you know the fancy bonnets and hats and things rather than the wig. But no I didn’t, I wasn’t happy with it and I was really pleased when my hair started to grow back. Though I was Judy Dench for a while. I like that

Very modern

I like that, yeah

No that’s good. So you said some of the staff on the ward were good nurses, were good caring nurses? What made them different?

Well because they would spend a little bit more time. When they were actually changing drips, doing the task that they came in to do, you know they might have a little word like to me. I never really got to know any of them very, very well but you know one would say like ‘I’m leaving because I can’t do hands-on care’ and she was going to a hospital where it was definitely hands-on care, although she liked the work, she liked the subject matter. But she wasn’t satisfied in her role. There was a couple of them actually in the three weeks I was there, left to go to other places for the same reason. Others would come in, do what they had to do – go, ask the question, you know ‘are you in pain? Do you need anything?’- go. (inaudible) ‘how many times you’ve been to the toilet’ – go – that kind of thing. Some of the care assistants who did, came in and changed the beds, were a bit more communicative but tended to talk about what they did the night before or you know about their boyfriends or talk over me in the bed – which I don’t think it good either. And I think you know they need to be taught to speak to the person; not about their lives – unless – there are – maybe some patients like that but I didn’t like it

I wouldn’t think most people do, would they?

I didn’t want to know what they’d had for supper last night! I couldn’t eat, I didn’t want to hear what other people could eat!

Oh yes, wasn’t that another thing you said

Yes, when I was actually allowed to have a warm drink, after, you know sips of water, I asked for warm milk and I actually couldn’t have it you know because of health and safety. And the microwave was about ten steps away from where I was, but they wouldn’t. You know that was another issue – I could not have warm milk. So my husband would bring warm milk in, in a flask from home, but that day when I really, really wanted it, he had to go downstairs to one of the canteens and bring it up. Now I think that’s more a health and safety issue, carrying milk halfway round, hot milk round a hospital, than ten steps away. But again I think it’s not listening to what people need or want. I was desperate just for some hot milk. I don’t drink tea and I couldn’t fancy coffee and, but no.

And the other thing that was really quite annoying was outside the door was barrier nursed, nil by mouth and every morning they would ask one of the ladies who did the breakfast, ‘do you want a cup of tea love?’ you know and there’s me

Oh dear and she didn’t read the notice?

She obviously hadn’t read the notice, yeah. So again it’s lack of thought isn’t it?

It is, yes

You know, when you can’t have something, you want it

Especially it’s sort of tempting you to have something you can’t have, isn’t it?

Yes, yeah

You know, you were in hospital three weeks and you said you didn’t really didn’t get to know any of them; was that because of staff changes and staff leaving?

I don’t really know, I think

You were so ill I suppose, most of the time

Most of the time, yes

Did your husband get to know any of them?

No, no he didn’t

It’s quite surprising isn’t it that?

I couldn’t tell you the name of one of the nurses and I think that’s, me being a nurse would expect I would, you know. No, I couldn’t tell you one name of one of them. I do see people now, I do recognise them as being on the ward. Some care assistants I’ve seen out and about and a couple of, in fact one of the nurses, I met, I saw a few weeks ago who’d actually left the ward but, because she wasn’t getting any hands-on, but she’s now back to the ward

Oh, the same ward?

Same ward, well I think it’s the same ward. But yeah she’s gone back ‘cos I think she enjoyed the subject.

Has she gone back because the ward’s improved do you think?

I don’t know, she never said. I hope it’s improved. You know I’d like to think it’s improved because I know there’s been quite a lot of people have complained

Have they?

of the wards, so it has to be taken on board, hopefully!

Yes, yes, did you make any more, you complained and saw the matron while you were on the ward; did you take that any further or not?

Not officially, I think when I came home I was so poorly that you just can’t think ‘ah I’m out, just thank God I’m out of there’ that was the main thing. ‘I’m out’. But I’ve tried in other ways to try and make a difference so hopefully…..

You are doing this

It will, yeah hopefully.

Matty’s Story (Part 3)

Please press the play button below to listen to Matty’s Story (Part 3) of his parkinson’s disease. Please click on November 2011 (on left hand side of the screen) to see parts 1 and 2.

Play audio here

Have you had any experience of hospital medication in Britain then?

Not hospital medication, no. Oh yes I have because, I forgot, when we were coming back from Greece another time, we tend to go May and September every year. I was coming back from, I think it was Greece, I’ll tell you about Benidorm after. I went to Faliraki I think it was and I was on the flight coming home and me eyes started to roll and I passed out and I woke up, a short while, about half an hour later I saw, and I had my wife holding this hand and a stewardess holding this hand, it was quite nice! And when we landed, they took us straight into an ambulance, took us to the hospital, I was in overnight while they did the tests that they do on the brain and what have you and then I was released shortly afterwards. I think that they had, there was something about the air-conditioning on the aeroplane and they had to get rid of a lot of fuel because they had too much fuel and inside the aircraft I got really warm, I think that had caused me to pass out. So it was a scary really but it was, I was ok. And then I go to conductive exercise to help us to walk because of me, the stoop in me shoulders, getting me shoulders back and helping us to walk and I find that really useful. I go to the centre once a week during the term times for conductive education it’s called, but it’s all about how to turn over in bed and how to sit up and how to sit down. And she teaches you lots of tips on how to make life easier, and if you’re putting a jumper on, put your fingers in there and spread it round and it comes down and when you’re standing up from a chair, put your hands out here and that guides you, so, your weight properly so you don’t end up flopping and things like that. that’s really good. That’s not what I thought of. I’ve had the voice training and I think I mentioned it before, I didn’t say what it was, that’s really good and that’s sort of ongoing. We have meetings every two months where you have to go along and talk loud and I do me exercises, I try to do them every day, talking loud and I practise me high notes and me low notes and do it that way. I don’t know what else to say.

Ok, if you’ve got anything more to contribute, if not we’ll stop there

Is that enough stories or do you want some more?

Well when you were in hospital in Britain, when you went, after you came back from your holiday, were you able to manage your medication during that time or?

Yeah, yeah I’ve always been able to manage me medication

Even while you were in the hospital

Yeah. Me wife said to us one day, ‘I don’t know what tablets you take’ so I sorted them all out in the drawer in the bedroom and each bottle’s got the instruction on it as to what I take. One per day, one half an hour before food, three per day, four of these ones a day, these ones when necessary, these ones if necessary and so it goes on

How important is that for you?

It’s very important to take the tablets on time because, well your body tells you, your body tells you; you start to get a bad back and you start to shuffle your feet when you’re walking and I get pins and needles in me toes, especially before they start clawing, it’s like a bit of a warning that the clawing’s coming so it gives us a chance to try and do something, to alleviate it. But I know it’s a degenerative disease and I know it’s going to get worse so I’m hoping that they can find a cure. When I was at the Parkinson’s conference in Glasgow I went to various different talks and listened to the speeches and the scope of the problems that people with Parkinson’s have are absolutely enormous. They were on about genetics and they were on about patient, the patient perspectives and whether you should drink coffee or whether you shouldn’t drink coffee.
One guy gave his top twenty symptoms of he had of Parkinson’s which if you think about, to have twenty different problems wrong with you is, but er, when I was listening to what he was saying, the different symptoms, the problems with this loss of smell, the problems with your voice, the problems with your brain, the problems with your shoulders, problems with your elbows, problems with your knees, problems with your feet, problems with the toilet, problems with sex and so on, it was like the song ‘Killing me softly with his song’ where Roberta Flack went to see, memory loss is another symptom! Went to see the singer who sang ‘American Pie’, what was he called, Don Maclean, she went to see Don Maclean in concert and when he was singing one of his songs, she wrote this song ‘Killing me softly with his song’ and it was about this guy, singing her life and a lot of the speeches I listened to at conference, guys on stage telling the story of my life with the Parkinson’s disease and lives of every other person that has Parkinson’s disease.