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Fourth
patient view
- (full conference transcript)
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Helen Lewis
David Griffen: I’m now privileged to call on Helen Lewis, who’s going to talk to us about her own experiences. She currently works as a project manager for Wellcome Trust where she manages a portfolio of projects aimed at examining the social, ethical and legal issues raised by advances in medical research. Along with her husband, Helen has looked after their daughter who suffered renal failure at the age of five. She’s now 28. During this time she’s had three transplants, and is currently on peritoneal dialysis. Helen, therefore, has been involved for a long time with managing renal failure and its consequences and will today share with us her personal view as a carer.
Helen Lewis: Thank you very much, Mr Chairman. I was quite embarrassed to hear all of that, and I wondered where it had come from. Then I thought perhaps I’d written all that when Jenny asked me if I would contribute today. Jenny asked am if I would talk about the carer’s perspective and I said, yes, I’ve got a lot to say. Then I thought, how will I say it in five minutes?
So, I began, as many doctors would do, when the patient goes into their appointment, by leafing through the summary at the front of the case notes, quickly trying to grapple with which patient is it. So yes, my husband and I have looked after our daughter since she was four but carers of a patient with renal failure for 22 years. She was five when she had renal failure. She had a live donor transplant about three months later following haemodialysis. I was the living transplant donor. That transplant lasted about five years. The transplant failed. She had a second shot which failed before it started, and then she had continuous peritoneal dialysis for six months at home, then she had a cadaveric transplant, which lasted 14 years and saw her through the remainder of her school days and she was lucky enough to go to university, saw her through university. When she was 25, the transplant failed under quite difficult circumstances, and she went back on to CAPD. She has an APD machine now, Home Choice, and this involves nine to nine and a half-hours on the machine every night, and one exchange during the day. This is very much a positive choice for Caroline. I want to say that, particularly after Polly had spoken this morning,’ Caroline has experienced both transplantation and dialysis, and she finds that both mentally and physically she is happier on dialysis at the moment.
I think this is a very important thing I want to say straight away.
I didn’t know what to say, so I thought I would say something about how the role of the carer has changed from when Caroline was a child of about five or six to actually being a carer of a young woman who’s now 28.
My first focus when she was ill was somehow making her better, because that’s what I thought I could do. Then I thought, we must keep her as well as we can and alongside that we were trying to maintain a normal family life, trying to cope with school for her, work for me, friends for all of us, family holidays, often with Caroline’s brother who is a couple of years older. And also being an advocate demanding the very best treatment from the health services. And I have to say then, I suppose from my perspective, even the very best at that stage was not good enough. It was quite interesting to hear Dr Chu this afternoon talking about the dermatology on offer at Hammersmith, and again, Caroline as a patient in another London hospital, has to fight ’ fight to be seen, fight to be reviewed, has to bring her agenda urgently for the team. For me, as a carer during those years, I took, along with my husband, the worries, the anxieties, the coping, the practical stuff, getting Caroline into hospital, coping with the continuing change of house doctor, registrar, surgeon, physician, always a different face at clinic. Managing everyone’s acute and chronic anxiety, managing changing drug regimes, treatments, giving injections, growth hormone, managing diet, change of diet, and so on. And all the time for me working, because I needed to work, and that was the way I managed to cope. I worked for my own psychological good, I worked because I wanted to be a role model for Caroline, to show that you could actually work and also deal with other stuff. I worked part-time, when she was young, to cope with conflicting demands.
As she grew up she became different, and it was a question of transferring responsibility for looking after Caroline to Caroline and that’s been an on-going process over a period of time. From 1990 to 2002 Caroline has gone from school to university and from university, first of all to looking very hard for work, finding it difficult to get work, finally getting into employment. Then finally seeking independence from us, perhaps looking at independent living, and she has recently moved into a flat, living on her own in London. There’s been intensive practical support right through that process.
Jane mentioned holidays. Holidays have been for all of us a challenge, particularly with the peritoneal dialysis situation. We’ve chosen to be independent, we’ve chosen to fill a car with three days’ supply of litres of exchange fluid and taken the car with the boot sagging and no room for anyone else in it, across France and with two nights’ stops. The convenience of dialysis fluid delivered at your holiday destination, but not the access of it, not the bibs and bobs, the solutions, the fluids and everything else that you need which are a caseful on their own.
So a lot of practical support, - in getting to work, in finding work, managing flat moves, managing all sorts of things. And emotional support ’ there’s still a need for emotional support, ongoing emotional support, but particularly when things go wrong. Helping with the frustrations, coping with power failures on holiday, when the machine breaks down because there is no power ’ lots and lots of things that you can’t condense into five minutes. And continuing to cope with everyone’s anxieties about the future, and just sitting here listening to the threat of skin cancer for a young woman who’s just been through 15 years on immunosuppression and has actually come off immunosuppression because of cancer worries. There’s all of that, buttoned-down anxiety to be addressed, particularly with a young person with a long history behind her, but also a long future ahead of her, and we believe a very long future ahead of her.
So there’s still a need for advocacy and life is still a struggle. We both work full time in London. I come in on a train to Waterloo, and I helped Caroline to look for a flat in Waterloo, so I can pop in in the morning on my way to work. I can pop in in the evening. She can get home easily; I’m available on the phone ’ all of these sort of things. Imagine, for example, a woman struggling with a 20 kilogram dialysis unit in its case. It’s meant to be portable, a portable dialysis unit which is bigger than a suitcase and weighs 20 kilograms. Imagine trying to go on a business trip in her new job. First week in her new job a trip to Manchester from London. How does she get herself out of her flat, how does she get herself across London, how does she do all of this unaided?’ There’s a huge need for practical support.
What’s the main messages I want to say about being a carer?’ In a way, I’ve changed those as we’ve gone through the morning, and now I no longer want to say what I think were the main messages. I think being ill makes a huge demand on your own time. It’s almost a full time job being ill. And then being the carer, it’s another huge demand on people’s time. And I think there’s a need for research so that there is more awareness everywhere of the impact of renal failure, transplantation and dialysis on people’s lives. So that when we’re looking for people to become kidney donors, for example, there are not so many of those people out there who think somebody has a transplant, they’re well for ever. Most people who are transplanted are not well for ever. I think that’s something that in terms of public education is another point to be considered.
Lots of things about being a carer Jane identified, in particular a carer needing to have some kind of identity outside the label of carer or outside the label of mother, and to be a person in your own right when you go along with your person with renal failure. You have needs of your own. Two other big things; one is that isn’t enough to care just for the physical health of the patient, and to see the patient in a medical model as a kidney to be treated, and that certainly happened to Caroline. Caroline was a kidney to be treated, not a person with needs and a family and relationships to sustain. I remember when she was 18 and she’d been kept at Guy’s paediatric unit for two years, longer than she should have been before transferring to the adult services. The consultant said to me, ’She needs to go to adult services. And I said. ’No, she doesn’t need to go to adult services. You need her to go to adult services, because that’s the way the system is set up.’ And it’s a question of how do you manage that transition, from paediatric care to adult care. Other charities, like diabetes charities, have research into managing that transition, but I don’t see that for renal patients. How is that transition managed?’ And when is it the right time?
And finally in that respect, about the kind of care, I do feel’ - and it’s been my experience all along ’ that dialysis is still a Cinderella service. It doesn’t attract the best medics, it doesn’t attract the best care, and it isn’t given the priority. And there are ongoing issues that with all our powers of advocacy we cannot get people to address. It is a constant problem ’ the difference between the rhetoric of this is what we do about skin problems and the reality of what the patients experience within the renal clinics are so diametrically opposed that there is a need to keep on advocating for getting the best for yourself and for others like you.
I just wanted to finish by saying, we talk in hospital about cost and benefit, and is it worth it. We have a wonderful daughter. She has survived enormous setbacks and has shown great resilience and great strengths. I think we’re survivors too, of 22 years of struggle. It does continue to be a struggle, and perhaps more of a struggle than it needs to be.
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