Q1

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Polly Moseley:  From the home haemodialysis perspective, the technicians are absolutely crucial.  They are on call and we do call them out.  I would have nothing like the quality of life without the home haemodialysis and the technicians.  We do have enough of them in Newcastle, but they don’t all work over the weekends. 

Professor Feest: We’ve got a lot of data about technicians from 1998 and we will be repeating the review next year.  In general recruitment of technicians isn’t a big problem. And there’s certainly no intention that it should be wound down. 

Q2

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Hany Riad:  The risk of live kidney donation to the donor is quite small.  Every donor when they come to be assessed, they obviously have explained to them the risk of haemorrhaging and infection.  We also explain that the risk of death as a result of the operation is extremely small, in the region of one in four or five thousand, if not less. There are advances in live kidney donation surgical procedures, and you have probably heard of keyhole surgery which is now being done mainly in two centres and is expanding.  Surgeons seem to differ in their attitudes towards keyhole surgery, but it is expanding.  As soon as people do it comfortably, it is a safe procedure. 

As far as paying for donors, there are two issues here:

1.      One is paying for loss of earnings and expenses and this is supported by the Department of Health.  However, the guidance from the Department of Health seems to be, they encourage it, they support it but they never put pressure on the purchaser and health authorities to actually do it, and I have a case of a mother who is asking for £100, and the health authority is refusing to pay it.  The guidance from the Department again is not forceful in pressurising the health authorities to pay it, and this is wrong.

2.      Now, do you pay for donors actually to donate an organ?  Are you going to put a price on the kidney?  This is a totally different matter.  If you want to be controversial, you can say that there is nothing wrong with selling an organ, but what’s probably wrong is buying it.  It’s a big debate which will be entered into some time in the future. 

Professor Feest: You might watch when the NSF comes out.  It is likely that there will be very clear guidance that the costs of donors should be reimbursed.  A lot of them are reimbursed anyway.  There is universal agreement that loss of earnings should be reimbursed. I think that will happen much more easily.

Q3

Richard Moore, Cardiff:  The increasing gap between demand and supply of cadaver organs means that we need to look not just at the quantity but also the quality.  You indicated that we were better drivers than the Spanish.  It means our donors are becoming older, with increased risk of other medical conditions. I’m concerned at the time of donation, many ITUs tend to switch off because in terms of looking after the donor, because they’re brain stem dead, their blood pressure drops, they’re not optimally hydrated.  Your title is director of donor care and co-ordination, so I assume there might be a move by UKT to look at organ procurement teams which will maximise the state of donors at the time of donation.  Is that so?

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Sue Falvey: Yes, it is so.  We have put together two working groups who hopefully will be meeting in November or December.  One is to look at the organ retrieval process in its entirety, and clearly even now some teams struggle if they have two donors in their local location, and if we hope to increase the donor rate, we need to ensure that we have the resources in place and the appropriately trained people in place to ensure that retrieval takes place efficiently and quickly, which is what the donor’s family want and the intensive care unit want.  For one thing they may have pressure on beds and clearly it is better for the organs if you can retrieve them as quickly as possible, because they will begin to deteriorate the longer the patient is ventilated. 

And we also have a second working group which is looking at donor management, because there is no doubt about it, organs are lost through poor donor management, particularly hearts and lungs. 

Q4

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Q5

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Lilian Rutherford: It’s the relatives, the living people we have to care for.  We’re very concerned.  I used to be a member of BODY who are donor families, who have experienced donation, and the nurses and doctors have to deal with the living, and I know donor families, and I would hate to think we took an organ and a family took years and years to come to terms with that, if they ever did.  I would rather die than get a kidney that was not a gift of life.  OK, the donor may have wanted to give it, but if they did not communicate it, I’d find that very hard to live with. 

I think we have to look after the living once we know we’ve got a donor there, and it’s ideal if people do want to donate.  I had a cousin who ended up on the streets of Edinburgh from having children at a private school, a very good business, turned an alcoholic and ended up on the streets of Edinburgh.  If he didn’t want to donate, I would have hated for someone to take his organs, if he didn’t know about the opting out system.  For me, it’s peace of mind and for the nurses I work with it’s peace of mind as well.  Because I look after people after a kidney patient has died, I still see my relatives, because I work in the community.  I used to be selfish, and I still am in some respects, but I think in this you have to look after the people who are living. 

Hany Riad: I very much agree with what’s been said.  A scenario which we come across not infrequently is of an 18 year-old who comes off his motorbike and has a serious head injury.  If this person had not opted out and if the mother say I don’t want my son’s organs to be removed, would you still want me to take his organs out against his mother’s request?  For that’s what opting out means.

Professor Feest: It’s a convenient debate – it has been in the past – to get everyone arguing about opting out and opting in while they’re not looking at getting money into other areas that are proven to work.  I think things have changed through UKT, but there are a lot of other areas that are going to make much more difference than opting in or opting out.  I think the politicians have got you comfortably talking about something that probably won’t make much difference and isn’t politically such a hot potato as some of the other things, like interventional ventilation and things like that.  Huge numbers of the population actually do not put their names on registers either way.  There is a huge inertia, and families have views.  I would be very uncomfortable taking kidneys from and 18 or an 80 year old if the family was saying I don’t want you to do it.  I personally couldn’t do that. 

Maggi Steele: An important point is that if your family know what your wishes are in the event of your death, even if it is not what they would want, the chances of them going against your wishes are remote. And in fact the first donor family I ever saw back in 1985 was the mother of a 16 year-old who died from a head injury and that was in the days of the 'That’s Life' television programme, and she actually said to me “I hate everything about this, I do not want to do this, but last week, he watched something on the television, he told me, if anything ever happens to me that’s what I want, because what a waste if it didn’t.”  And she said, therefore I have to do it, and if there were a small number of families to whom you would cause so much distress if you went ahead and they didn’t want you to do it, potentially the negative publicity that that may generate could damage donation programmes much more than actually losing a very small percentage of families who may not fulfil their relative’s wishes, which is why it’s so important that the message is that everyone must make sure that their nearest and dearest know what they want in the event of their death.

Q6

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Hany Riad: Two things – one is if you’re wife’s nephrologist is prevaricating a bit about considering you as a potential donor for your wife, go to the transplant surgeon. Surgeons seem to get things moving quicker than physicians – sometimes.  The issue about the swap of kidneys has been raised.  I recently had a letter from a family who wants the same thing.  It needs a lot of organisation.  It’s not impossible, but you have to do it at the exact same thing and if you are identified in your own unit, you and your wife, and another couple somewhere else, suppose you donate your kidney and the other person in the other unit decided not to.  It’s something that in theory it can work, probably in practice it might work but it needs a hell of a lot of organisation and looking into.

Professor Feest: We actually tried this – we had two couples who wanted to do this and we would have operated at the same time.  But we were refused permission by the ULTRA regulations. They said at the moment they wouldn’t touch it.  So there are people willing to try it, but I think the timing is critical.  In terms of giving a kidney to your wife, if you lived where we live, you wouldn’t be sitting in that seat now. 

Lilian Rutherford: I think we’re back where we were in the 70s and early 80s, where it wasn’t even allowed for wives and husbands and husbands and wives to give kidneys.  We have moved on from there.  I think Newcastle and Dr Ross Taylor brought that one forward as far as I am aware as a patient.  I think it was on the Kilroy programme that Ross brought forward a couple where I think the wife had given the husband a kidney.  Who knows, we might be hearing in five or ten years time and you’ve donated to a friend or another kidney patient.  And as far as getting your live donor to your wife up and running, I would see the transplant co-ordinator.  Or are you in one of these unfortunate areas that doesn’t have a transplant co-ordinator? You may have to go to Middlesbrough or Newcastle, I don’t know.

 John Blanchard: We do have a transplant co-ordinator, but I’ve yet to be able to see them. 

Professor Feest: You’re all talking about wife to husband, husband to wife.  You don’t have to be a married partner or a married friend to donate, and we certainly have had one or two donations simply from long-standing friends, not partners, but long-standing friends.  If you can prove that it is a long-standing friendship and I think that’s reasonable because otherwise there is a grave danger of paid or coercion donors.  It could be someone who is a lifelong friend who donates. 

Q7

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Q8

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David Griffen:  Would the panel like to respond?

Professor Feest: I agree with you, but it isn’t actually the animal liberation movement that is stopping pigs kidneys, it’s problems with safety and whether it can actually be done.  At the moment it doesn’t work.  So research is continuing.  The other issue is that we do need to keep pressing on with cadaver and live transplants because if you look at Spain which has the high treatment rates for renal failure they actually have more kidneys than they need.  Now it’s the only country that has managed it.  Spain do not do live donor transplants, or very rarely, because they have got so many cadaver grafts.  There are a lot of problems and they do have bad drivers, but we could do a lot better if the organisation was different.  It’s not in the renal units we have to look, it’s in the rest of the hospitals that we have to be working.  Opting out or opting in won’t make any difference.  The difference is in the way hospitals are organised.  That’s where we have to look. 

 Lilian Rutherford: I think we also have to go back to prevention.  OK, it can’t change my life, it can’t change your life.  We have had to live with it and we still have to live with it.  But we have to look at the children, the Asian people that I’ve nursed.  They come in with blood pressures.  Yesterday I had an Asian chap who was a doorman and he’s been taking steroids and I said to him “What are you playing at?” He had an HB of 19 point something and he’s going into renal failure.  But he said, “I’ve got to look like this to stand at the doors of the night club.”  I told him, “Well, you are a fool,” because I speak straight to patients.  And they take it or if they don’t I explain why I speak like that.  Once they know my background it makes them think twice.  OK, I look well and healthy and I work full time but it’s been hard, as Polly said, every day is a fight.  I’ve done it for 30 odd years, I know. So my main theme is prevention.  We can’t change what we’ve got but we can change the future by hopefully not getting more people in this special club that we are in today. 

Polly Mosely: Can I just say I agree with you?  Obviously you want to look at the best options for transplants but I had a transplant six years ago and it lasted three months and I’m not on the list at the moment.  I think when people have been successfully transplanted and received this gift of life, it’s quite easy to look back and see the time of life that you were on dialysis as a write-off. That’s really difficult for people who are on long-term dialysis to deal with because they think that my life is a write-off until I get a transplant.  They have got this kind of Holy Grail view of what a transplant is that it’s going to solve all their problems in life.  And that makes dealing with transplant failure so much more difficult when it happens.  Then you have to go through the trauma of readapting as though your whole life is back to square one.  There’s so much that can be done to improve patient quality of life on dialysis, not only through treatment but through the other areas of their life that they are able to engage in and live life much more to the full than a lot of people feel able to do.  It’s quite a difficult tension to manage here for the National Kidney Federation, because yes, you want to promote transplantation, but not at the expense of people’s lives who are on dialysis just as a waiting game, because there’s a lot you can achieve in terms of a career and a full life on dialysis. 

Q9

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Jane Atha: I know that changes, when it becomes the carers’ allowance, that you can claim it if you are over 65. 

Thomas Hoxhale: In the new legislation that has just come out, anyone over 65 the invalid care allowance ceases once you pick up your pension.  Is there any reason for this, because my wife has been on home dialysis for 28 years now and I still have the care of her which will go on, obviously, but the benefit will cease when I’m 65.

Jane Atha: I know that your pension is taken into account when claiming invalid care allowance.  You can now claim invalid care allowance when you’re over 65, but you may not get it because of your pension entitlement.  Like I was saying earlier about benefits being a minefield.

Thomas Hoxhale: Is the Government saying that my wife’s care ceases when I’m 65?  I still have the same responsibilities. I mean other people will get their old age pension at 65, and I gave up work when I was 58 to look after my wife.  Is there anything being done about it by yourselves?

Jane Atha: I don’t know the finer details.

Simon Wall, renal social worker: On the invalid care allowance, the rules change from October 28, tomorrow. Previously, if you were over 65, you couldn’t claim any invalid care allowance or carers’ benefit, so the actual change in what the Government are doing, even though it’s only a notional claim and it’s means tested, through social workers and patients lobbying the Government to change the rules, it is acknowledging the fact that people over 65 are caring for people.  It’s a small step towards recognising it even further, so if you were over 65 before when you were a carer there was no recognition of that.  You wouldn’t get any benefit or any entitlement, so the way they’ve changed it now is that, yes, your pension is taken into account and it is means tested, but it is a small step towards the recognition of it. So before tomorrow, anyone over 65 – you may be putting in 35 hours care, you may be putting in 70 hours care, the Government wouldn’t recognise that at all.  So in a small way it’s a very small step, and a very small positive step. But before Monday if you were over 65, no benefits, no recognition of your care.  We all know the ageing population is growing vastly and it’s a recognition towards the value of carers to the Government. A £101m worth of caring in Middlesbrough alone shows a great vastness.

Q10

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Gary Lloyd: This is something that the NKF has become aware of, the problem with paediatric care.  We have now, with the help of Sara Tyler, started off the Young Persons Group, and it will be looked into in the future.

Anne Keogh: I’d just like to add the comment that of course the National Service Framework isn’t going to solve all the problems but I think the NKF is lobbying as a group and a lot of people are speaking with the collective voice.  But you all have a voice as well.  Go on to the Department of Health website.  The NSF details are there and you can add your comments as an individual, so the transition from paediatric to adult care is a good example.  The more voices that are heard out there the more people will listen. 

Helen Lewis: Another point here is that many patients’ organisations use some of their funding for social research into this area and look in depth at young people’s voices in a structured sort of way.  If that report is published, it can be used by organisations to lobby Government, lobby health services, and get more publicity.  It’s not only patients’ groups but also actually social research and the weight, if you like, of academic research can actually add value to getting changes. 

Simon Lloyd: Can I just add something else about NSFs and what we expect from them?  When the first one came through on the elderly, they promised the earth.  They delivered so little money that very little has happened.  And I think we have got to be very careful, and I hear what people are saying about the NSF, it’s the target that will eventually, hopefully, mature in probably about ten years’ time.  We ain’t going to get it today.  The money ain’t there.  This is a difficult one.  I happened to have been the observer on Northumberland Healthcare Trust which has a multi-million budget, and for the NSF for the elderly in a great big area the Government gave £40,000.  Peanuts.  And this is the amount the Government at the moment cares.  I’m glad the Framework is coming into being, I think it will take a long time. 

Sara Tyler: I’d just like to add about paediatric care to adult unit.  There was a very useful conference on this topic this summer at Hope Hospital in Manchester and it was called Toddlers to Twenties, and it specifically looked at non-compliance in terms of transplanted patients who were transferred from paediatric to adult services.  There was a patient there who spoke who had lost his transplant after becoming non-compliant after moving to adult services.  There was some very useful talks and some research that came out at that conference, so I’m sure that the people from Hope Hospital would be happy to disseminate some of that information, which could maybe kick start some of the further research that could go on nationally. Because I think it’s a very crucial area that Helen brought up that hasn’t really been explored.  The Toddlers to Twenties was in June in Manchester and Donal O’Donohue, who was on the NSF group, was the guy who was leading on that in Manchester. 

Gary Lloyd: Thank you, we’ll look into that one.

Q11

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Q12

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Q13

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Gary Lloyd: We don’t seem to have an answer at the moment.  We will look into that one and come back to you. 

Guy Hill, North West KPA: Just to answer that lady (it wasn’t what I was going to say) in fact there’s a question forward at the committee meeting tomorrow with regard to Wales, because of the closure of some form of combining a Welsh facility with Bristol.  So there is something we could say about Wales. 

The point that was made earlier about the travel on haemodialysis.  This is something that we’ve looked at as a KPA, because we represent Manchester where you would feel that lots of people would want to travel for longer than the proverbial one dialysis night.  I did approach our hospital and ask them whether they would allow us to somehow fund a holiday/dialysis situation, where we in fact paid for the bill for that particular stay.  It would be done with other KPAs – Newcastle, London, and that sort of scenario.  I think it’s within the NKF to try and arrange that sort of situation, because it shouldn’t happen all the time.  I was told that they had never considered it because they had never been asked for it.  And the question I ask of all of us here is, whether if it was offered as some sort of arrangement where you could have that sort of thing, would we actually use it?  Are there people who do want to travel for longer than the one night?  And therefore shouldn’t we have a reciprocal arrangement between KPAs who could fund it? And maybe we could get sponsorship through one of the companies represented outside to fund this service.

Simon Lloyd: I think the whole question of dialysis in different units is a very difficult one.  I have a sister on haemodialysis who finds it difficult because she has a daughter in Aberystwyth.  Because she is on home haemo getting the tests and so on is difficult.  Having said that, I know that, having sat on our own regional special commissioning group, there are ways of cost exchanging. I would caution against KPAs getting involved in expenditure.  The Health Authorities will pay for it.  They have done it and they will do it.  There is a very real problem in holiday dialysis.  Can I say respectfully – some of it we have got to be prepared to raise ourselves.  How many of you are involved in a user group in your hospital?  Right, but not many.  Look – there is recruitment and people are crying out for people like us to get involved.  Yes, you won’t go in as a kidney patient, you will go in to represent the general public.  But you and I have a story to tell, and if we don’t tell it, nobody else will, because from my experience people do not understand our needs.  They don’t even know that we need haemodialysis three times a week.  They don’t understand that there’s a difference between haemo and peritoneal.  Why aren’t we telling them?  I know we’re busy with our own things.  But sometimes we need to actually invest some time in getting involved.  Katherine (Wright) and I are both involved in local community health groups.

Q14

Judith Sidaway, Wordsley KPA: I’d just like to ask Tony Chu – if patients take your words to heart and don’t go out in the sun at all, use sunblock all the time, cover themselves up, what implications does it have for the bones, the skeletal structure in the body?

A

Tony Chu: Really very little.  Even with a high factor sunblock. 

How many of you realise that you can get your sunblocks on prescription?  You don’t need to go and buy them.  You can get Roc Factor 60 on prescription. So go and ask your GP about it. Even using that you still get enough ultra-violet through the skin to stimulate vitamin D, so you don’t get rickets, there is no problem with that.  There is still enough sun exposure.  You can’t completely exclude sun exposure from the body unless you actually have a nocturnal lifestyle. But no risk there at all. 

Gary Lloyd: I’d like to thank the panel.  I’d like to thank you for your questions.