I'm writing this sitting on the pavement on Tooley Street, just before the 12 mile mark of the London marathon, as thousands of runners are pounding past.
Somewhere among them all are ten runners who are raising money for the KPA - their shirt numbers are 38700-38709, and ther fundraising pages are all here.
Do check them out, and pass these links on to al your friends. These guys and girls have been training hard and with the heat of the spring time sun beating down on us all today, they deserve your support. Even if you just donate a pound or two, use it as an excuse to leave them a message saying thanks for everything they're doing for us.
This year's AGM will be on Saturday 13 December at 11am, in the Roben's Suite, on the 29th floor of the Tower Wing at Guy's Hospital.
If you haven't received a copy of the KPA newsletter dated Nov/Dec 2008, please email chair@gsttkpa.org and I'll send a copy by return.
When I get a moment, I'll put a copy online, and a link here to read/download it.
If you have any questions about the proposal to merge the KPA with the Guy's and St Thomas' Charity, feel free to post them as comments here, or send a mail to chair@gsttkpa.org.
More to come here - I'm late for a blood test right now...
Then in a session all about EPO, we heard from Iain Macdonald, a renal consultant at Kings, and also Rosie Savage, who's a renal patient at Kings, but also works there.
Rosie is now sitting beside me in the hall: We're listening to Juliet Reeves, a kidney patient who also happens to be a dental hygenist is talking about 'dry mouth syndrome' and other dental issues with particular relevance to kidney patients. It seems that sonic toothbrushes are the way forward. Apparently we should be using detergent-free toothpaste. If using 'normal' toothpaste, we should be avoiding 'sodium lauryl sulphate' in it, which is actually the same as washing up liquid. Other recommendations are:
Alcohol free mouthwash
Suger free chewing gum - stimulates Saliva
Probiotic lozenges (especially for post-tranplant patients on immunosuppressants).
First for egotistical reasons! My donor and I did an interview on 7th August (which happened to be our 1st tx anniversary) with the 'Health Check' programme on the BBC World Service. It was broadcast today (and again at 1.30am in a couple hours if any night owls are about). We were trying to get across how living donation isn't as scary a prospect as it might seem at first. Not sure how well we did - as usual there was loads we meant to say that didn't get said! You can listen/download/get podcast from the link above.
Then on Radio 4 this evening was the second in Ben Goldacre's (noted for his sceptical approach to most 'alternative' medicine in his excellent 'Bad Science' column in The Guardian) two part documentary on 'The Placebo Effect'. You can listen to both programmes for now on the Radio 4 website. These have been fascinating. They should be required listening in medical school! They back up something i seem to keep coming across right now about how the chances of recovery or improvement in medical conditions are hugely greater if you as a patient 'believe' you're going to be better (sometimes also called having a positive attitude).
Then Claudia Hammond (who interviewed us on the World Service) cropped up again discussing the famous 'Stanford Prison Experiment' in a new series called Mind Changers. Not really kidney-related but fascinating nevertheless!
The Brighton thing is an event happening there near the West Pier this Wednesday (27 August). It seems to be being organised by Sky TV as an organ donation awareness event, connected to a forthcoming programme they're doing. They're trying to get as many people as possible to come down between 11am - 6pm to join the donor register. They're keen to have people on hand who've had experience of being living donors and transplant recipients. I'll be there around 2pm. Would be great to meet anyone else who might be reading this down there.
This is a great talk - nothing directly to do with a kidney patient's diet, but I'm pretty sure that all of his recommendations would be heartily endorsed by a renal dietician. Perhaps there's one out there who'd like to comment...
Trevor Cook was the chair of the GSTT Kidney Patients' Association for two years, before handing over to Andy Williamson in October 2007. He's still involved as vice-chair, but is becoming more involved in some of the National Organisations. Here's a taste of what he's been up to recently...
Trevor writes:
"I’ve been fortunate in working with some talented people in the Modernisation Initiative (MI) on the Life Style Project. Many aspects of the project – which seeks to address the non-clinical consequences of kidney failure – have been carried forward into the mainstream work that happens at Guy’s and St Thomas’ (and perhaps nationally – more below). Over time this will lead to a greater understanding of the challenges that kidney failure places on individuals, families and society. Alongside this will be a programme to address more positively the consequences of these as part of the clinical response to illness.
With this in mind it was interesting to attend the British Renal Society/Renal Association Conference in Glasgow during May. There was an overwhelming number of speakers, posters and exhibitions to attend and view. I nevertheless came away with a strong impression that the views and needs of patients were paramount in the way that services across the country and the world are developing. The practical and emotional needs of patients and their immediate families were highlighted in many presentations and reflected some of the work which is on-going at Guy’s.
It was rewarding to see that much of MI’s trail-blazing work was given such a positive response at the Conference.
Earlier in the year I was elected to the Executive Committee of the National Kidney Association (NKF) and I attended a weekend introduction session in Worksop. The NKF is the mouthpiece for Kidney Patient Associations around the UK. It has a very hard working staff and is highly influential in developing policy with Government and others. Membership is going to be a challenge as when representing an amalgam of organisations it is difficult to achieve or represent an agreed view which does not become too conservative in its ambitions.
Arising from this I have been invited to join the Lay Advisory Committee of Kidney Research UK.
I will keep KPA members informed of the progress of all this work as it unfolds in the coming months.
Depression and its influence on transplant patients
Some research being reported here about how suffering from depression significantly increases the risk of transplant failure.
The sceptic in me wants to say "if someone is depressed, isn't it also more likely that they'll be doing other things which might adversely affect a transplant outcome? Forgetting to take medication, perhaps." so although the depression might be a related symptom, is it actually the cause of the increased risk of failure? (I'm not a doctor, so this is just an uneducated opinion).
It's with sadness and respect that I write that we have lost two members of the KPA Committee who have died recently. As a new arrival, I've had hardly any contact with David and Charmian, though I'm aware that both have been involved with the KPA for many, many years. I'll leave it to others who knew them to write of their memories of either in the comments below. David's funeral was a few weeks ago. Charmian's is on Weednesday 11 June at 12 noon at Eltham Falconwood Crematorium.
Enormous thanks to everyone who ran the London Marathon today in support of the KPA. I saw a few of you after the race - those who still had enough energy to stagger along to a pub, instead of heading straight home for a hot bath and putting your feet up!
To see all the marathon runners, go to http://justgiving.com/gsttkpa/raisemoney/ and click on the "see all Guy's & St. Thomas' Hospital Kidney Patients' Association fundraisers" link. The target for all the runners is to raise over £1000 for the KPA. Some have wildly exceeded this - for which many, many thanks. Some still have a way to go. If anyone reading this would like to help them along their way towards the goal, please feel free :)
My day was blighted towards the end by a bit of crazy carelessness. I'd fixed my bike to a lamp post near Parliament Sq. While carrying the open combination lock along the road, I must have inadvertently changed the 4 digit combination, as when I went back for it later, the normal number just wouldn't work! After about an hour trying to guess it I gave up. Will try and find some bolt cutters and go back tomorrow, hopefully avoiding arrest for theft!
Wednesday, May 21st, 10.00 - 4.00, Crypt Farm Cocking, Nr Midhurst. GU29 0HP - (a map)
Philippa Gibbon has run a Spring Fair in aid of the KPA for the last 16 years. It involves opening her garden and having stalls in a barn. It's in the south Downs village of Cocking south of Midhurst on the A286. The stalls are varied including Jewllery, some clothes and shoes, bags, cards, garden trellises and plants etc., They offer teas, coffees and light lunches. The Fair opens at 10.00 and closes when the last person leaves, usually they start packing up around 3.45. The entrance is £1.00.
She would be delighted if anyone living near enough was able to come. Or If you know anyone down there, do please send them along.
I gather that the NKF is organising a 'balloon launch' for WKD, this Thursday, 13 March, at 10.15am in Potters Field (at the south end of Tower Bridge, next to Ken Livingstone's big funny shaped HQ building). I'm planning to be there.
Also, the Polycystic Kidney Disease Charity is organising a reception in the Manchester Museum of Science and Industry on Friday 14 March from 6-8pm. Full details here.
The main attractions are the UK 'Renal Tsar' Donal O'Donoghue and geneticist, Dr Anand Saggar who will be talking about some very exciting new research affecting people with PKD.
They've also invited me up to play some jazz (for which I'm delighted to say that I'll be accompanied by two of the best musicians in the country, Kathy Dyson on guitar, and Steve Berry on bass) and to speak about living donor transplants. If you know anyone in the Manchester area, do send them along. Admission is a £2.50 donation to the charity.
Debate about Organ Donation at the Wellcome Institute
The Wellcome Institute is hosting a debate on 27 March, 19.30-21.00 with the title "In or Out?" about whether the UK should adopt an 'opt-out' system for the organ donor register, rather than the current 'opt-in' system.
The speakers are: Gill Haddow (Research Fellow, University of Edinburgh). Monica Navarro-Michel (Law School, University of Barcelona) and Juliet Tizzard (Deputy Head of Medical Ethics, British Medical Association). It's being facilitated by Claudia Hammond of the BBC. There's more information here. To book, please call 020 7611 2222 or email the number of tickets you require, together with your full name and telephone number, to events@wellcomecollection.org.
I'm hoping to make it along. If you have strong feelings either way about this issue, I'd be really interested to hear them - either as a comment, or by email to gsttkpa@gmail.com.
Today I received a request for help from the KPA with travel costs for a patient who needs to travel a long distance to get to Guy's. This is something that has come up a few times since I've been involved, and nobody has ever known exactly what other help is available, as this is not really something that the KPA can normally deal with - we don't have the human resources to properly consider a large volume of applications, and if we did start funding things like this, our funds would disappear pretty quickly.
So I thought I'd do a little bit of exploring to see what kind of help IS already available to people - it didn't take long to discover that the NHS has two schemes which will refund travel costs for visits to hospital. If you're on a qualifying benefit, then you automatically qualify for refund of travel costs. If you're not on benefit, but on a low income and, there's the NHS "Low Income Scheme" through which you can apply for a certificate or card which will fully or partly refund your travel costs. Anyone can apply for this, if you have less than £16,000 savings (£21,500 if you live in a permanent care home). After that, it depends on your weekly income.
Travel expenses will be refunded to patients by the Hospital Cashiers' Office to anyone automatically, if they are on one of the following benefits:
- Income support - Job Seeker's Allowance (income based) - NHS tax credit - Pension
You need to provide proof that you're on whichever of these applies, AND a travel claim form. You can get this at Guy's from Diane in the Kidney Clinic reception, who'll sign it to prove that you attended. You also need to provide proof of travel (tickets, receipts, etc) which should be by the most economic means possible.
You can read more about the NHS Low Income Scheme in a leaflet called HC11. To apply for help under the scheme you need to complete form HC1. Once you've submitted form HC1, you will be sent a certificate. If you are entitled to help with all your travel costs you will receive a HC2 certificate. IF you are entitled to some help you will receive a HC3 certificate. Your certificate will say how long it is valid for (this will be between six and 12 months) and who else it covers (for example your partner and dependent children). If you are waiting for your certificate to arrive you can fill out form HC5 to see if you can claim back the cost of any journeys you've made within the last three months. In England, Wales or Scotland you can get these forms from your hospital, local Jobcentre Plus or Social Security office, or by calling 08701 555 455 or visiting www.ppa.org.uk.
Whenever I've been to Guy's, I've always arrived by tube via London bridge, or by bus or bike from Borough High Street. So whenever I've gone out looking for something to eat or drink, or to search (usually in vain) for some wireless internet, i've always gone back that way to the various shops and cafés around Borough Market, or the station.
Today, I left the main entrance to cycle to the Camberwell Dialysis unit, and turned left along 'Great Maze Pond'. At the end of the road, there's a whole string of great looking cafes and restaurants, plus a huge pub The Miller, where I'm sitting now, hooked up to a free WiFi signal, and taking note of their Thai Lunch menu (all dishes £5), as well as the live music venue upstairs and the underground films that get shown here.
Talking of wireless internet, in the next few months, we should be getting some - in all the inpatient wards, dialysis wards and outpatients clinic in the main Guy's building. The KPA also has received a donation (Many thanks to the residents of Raylands Park Caravan Site in Southwater, West Sussex) which should pay for wireless internet to be set up in Camberwell and New Cross dialysis units. This could happen very quickly, in the next few weeks.
Thanks to Ann Cooper, one of the KPA committee members for passing this on:
The Care Calculator. The BBC has launced an interactive tool to give people an idea of how much social care support they are entitled to and how much it will cost. It is part of the Care in the UK series on radio 4. Further information is available at: www.bbc.co.uk/radio4/youandyours/careintheuk/calculator.shtml
As Guy's is the nearest hospital to the starting point, just down the road, it would be great to have a big turnout representing the KPA. Perhaps we could raise £1000 in advance and sponsor London Bridge?
Although the vast majority of people waiting for transplants have kidney problems, another big group of people are those with cystic fibrosis, many of whom need lung (or heart and lung) transplants as a young adult. I've been privileged to get to know Emma Harris and Emily Thackray (above) over the past year or so, who both have CF. They set up the charity http://www.livelifethengivelife.co.uk - which campaigns for people to sign up to the organ donor register. Several kidney patients are also involved as trustees with them now. Emily had a transplant a year ago. She's been in the media spotlight a bit recently - speaking extremely movingly on Radio 4's 'The Moral Maze' about the opt-in/opt-out issue. Her story has just appeared in The Times too - Emily Thackray's Story of Life After a Lung Transplant.
Last year they organised a great gig - Laughter for Life featuring Bill Bailey, Dara O'Brien and some other great comedians. IT was a sell out show. I gather there are plans afoot for another this year. Will post details here as soon as I know more.
At the reception after the AGM, I met Grainne Walsh, transplant nurse at the Evelina Children's Hospital at St Thomas'. This morning I took her up on her invitation to visit the renal unit there.
After being rather brusquely told, "you can't ride that froo here", by one of boys in flourescent green, manning the roadblocks all around Westminster for today's state opening of parliament, I lugged my bike across Hungerford Bridge (well, up an down the lifts if the truth be told), and scared a few tourists waiting to go on the London Eye by cycling a little too swiftly through them. I arrived just in time to join Grainne and most of her colleagues for tea and chocolate goodies from M&S (is that what all visitors bring in? I know I left an identical tub and a half with the nurses when I left Richard Bright ward a few months ago).
It was great to meet everyone, and to hear from the front line about some of the things which are really needed, and which the KPA might be able to help to provide.
Strikes me that the huge atrium at the Evelina would be a perfect place to grow all kinds of things which need a greenhouse to thrive. Some green would go well with the funky red baby grand piano in there from Marksons - as well as providing the poor thing with some shade perhaps!
During our meeting, I first heard about Ronald McDonald House, which provides free accommodation for parents of children at the Evelina. Then these evening, I received this in my mail:
I recently met someone who has started an interesting project for kids (see below). She has some backing from some of the biggest names in the gaming business - and some good academic research to back it up. I put her in touch with the Evelina Children's hospital at St Thomas', and they sound interested. I haven't seen the Evelina yet, so we're both going over there on Tuesday.
We're used to hearing horror stories about violent and other unpleasant content in video games being a bad influence on children - interesting to hear of another perspective. I used to work in the multimedia industry in the 90s, and remember being touched when we received a really moving letter from a teacher of 'difficult' young children. One of out CD-ROM titles was called 'My First Incredible Amazing Dictionary' - she said that this had been responsible for getting one particularly quiet and uncommunicative young girl (aged 5 or 6 I think) to really engage with something for the first time and start to interact with those around her.
Ouch! is a project which is committed to providing 'fun centres' for young people in hospitals and hospices in the UK. These fun centres are portable vidoegames systems which will include Playstations, Xbox's, PC's, PSP's, Wii's and a library of games for people to choose from. Portability is a key factor to ensuring that these centres are accessible to all.
Research coming out of the US and Australia suggests that video gaming can provide pain relief for young people whose bodies often cannot handle the drugs that would be needed to alleviate their discomfort and the side effects that they can generate. By providing these fun centres Ouch looks to provide relief, entertainment and fun for young people across the UK and bring together game publishers to register and commit to a donation on an ongoing annual basis.
Is there anyone out there reading this? If so, please leave a comment to say hello.
Last Saturday, 27 October, the KPA's AGM picked me to take over from Trevor Cook as Chair of the KPA - which I'm very happy to do, I think! That last caveat is just because I'm still not 100% sure what I'm letting myself in for, but it seems like a good, and interesting thing to do, so let's see what happens.
I've been a patient at Guy's since February 2006 when I 'crash landed' with End Stage Renal Failure (a GFR of 6 - ie not a lot of activity in the kidney department!). 3 days after my first visit, I was back to start haemodialysis, which continued 3 times a week for the next couple months. As soon as I could, I changed from haemo- to peritoneal dialysis (APD/CAPD), which suited my lifestyle much better. In August 2007, I was extremely fortunate to receive a living donor kidney transplant from a great friend. As I write this, almost 3 months later, all seems to be going well - I certainly feel better, MUCH better, and am loving being liberated from the daily (and nightly) ritual of PD.
I haven't really been involved with the KPA before, so I was a little surprised to be approached and asked whether I'd consider taking on the role of chair. So far I've discovered that it does all kinds of great things, and potentially has the resources to do do more. One big area where I think it could improve is in communicating with the members - who include all renal patients at Guy's and St Thomas' hospitals, and several associated hospitals and dialysis units. (If you're a patient, you're a member - no subscription or joining fee required!).
My first step towards this, is starting this blog. I've started other blogs in the past, and haven't always been that great at keeping them up to date. I'm going to do my utmost to post things here which are relevant to KPA members as I discover them. I invite you to add to what I write by posting comments (remembering that this is a public website, which can be read by anyone!) If you want to contact me privately, please email gsttkpa a....t gmail d o t com (written like this to avoid the junk - I hope you can work it out!). I know that not all KPA members are active internet users. I hope to find good ways to reach all members with news and info, whether it's stuff in the post, or in other ways.
In my opinion, one of the best ways for kidney patients to have a better quality of life is to help each other, whether with advice, information, support or just a willing ear for sharing frustrations, joys or whatever. I know that one of the best things that I did a few days after my own diagnosis was to discover the KPG forum - it was there where I first found other people living full and active lives while on dialysis. This gave me inspiration to live a life where dialysis was just another one of life's daily chores, and not something which would ever take over. I'd love to create other things which provide similar support to all KPA members - whether online, or in the 'real' world - though of course anyone is free to join the KPG board. There are also others like it, each with different flavours, whether geographical, medical or social. If you know of one, perhaps you'd like to share it - leave a comment.
This is the GSTT KPA blog, based in London, UK, but with members who live across a wide area of the South East of the UK.
It's a quick informal way for us to publish information which may be of interest to our members, which include kidney patients, hospital staff, family, friends and other interested parties. If this is your first visit, click here to jump to the 1st post for an introduction.
About Me
Name: Andy W, Chair, GSTT KPA
Location: London, United Kingdom
Guy's & St Thomas' Hospital is a large teaching hospital in central London. It's one of the largest centres in Europe for Kidney Transplants - in particular, living donor transplants. The Kidney Patient Association, founded in 1982, represents all patients, their families and staff in the renal department.
This blog was set up in November 2007 by the new chair to create a quick way to disseminate up to date news and information to all members.
