Kidney Cancer Bloggers Have your Say

I’m in a quandary. I’ve been raising money now for the James Whale Fund for Kidney Cancer over the past 3 years and I hope I’ve been reasonably successful at it, or at the very least played my part .  The Arch to Arc Cycle Ride is clearly the one thing that I can point at and call an achievement, yes it would have been nice to have had a few more riders this year however it’s the first time it’s been done and it’s been kept deliberately small this year whilst we find our feet and discover the SNAFUs with a smaller more manageable group.

The great news is for this year, we’ve hit out £20,000 target, which I think for a dozen or so people is an absolutely amazing achievement, so yet again, thanks to everyone on the team, you’ve all been brilliant! and I’m so looking forward to just getting on and doing it in a few weeks time.

It has to be said that no matter how much advice you glean from others that have run these types of events it’s still a learning experience when you do it.  It’s a bit like riding a bike really, you can be told exactly what to do and how to do it, but it still takes a while to find your balance once you get on.  I know there maybe some folks that felt it might have been best if we’d gone with a larger group.  Well, we did take that into consideration but the Fund really wanted to do this for themselves, and I can see why.  If you go with a larger group of charities you’re diluting the message you want to get across.  It does mean the growth and learning curve is going to be steep, but the net result, we hope, is that we have an event that is wholly specific to Kidney Cancer…. “from little acorns” as they say.

So what’s my quandary?  Well, it’s that steep growth curve I want to achieve.  There are two things that concern me.  One is personal:

• How do I raise £2000/£3000  year on year? How do I go back to my friends and colleagues each year asking again and again? It’s a big ask.  Everyone has been very generous and I get a sense that people get “Giving Fatigue” … I know I do.

So what do I do?  Do I get a new set of friends? …. well that’s not terribly logical and I’m quite happy with the ones I’ve got.  However, if I can’t keep on asking for their money maybe I need to engage people in a different way and ask them to push the event harder on their own Social Networks i.e. Friends of Friends. That’s one way I guess, but I sense the message will get more and more diluted the further the degrees of separation.

I think the real answers for me are four fold

1. I need to engage local business more than I’ve done so far and get out there and pound the streets a bit.  It’s the annual donations that will really make a difference.
2. Look at doing little mini-events like Curry nights or maybe even mini-cycle events.  We could look at creating a James Whale Fund for Kidney Cancer Sportif around the Watford area (or Cambridge where the charity’s based)
3. Try and engage the Social networking wizzards like JP to see if they have ideas on how you can mobilise an army of twitter & facebook friends/followers
4. Make sure that we publicise what the charity will be using this money for and how it can help patients and their families.  I’ve often been asked that question this year, especially from those people who work in a health related profession.  I can’t tell you how important that is, there are quite a few people out there that are reticent to give because they’re not sure if the money will be used wisely.

My seconnd quandry is less personal but still relevant to the first one:

• How do we attract up to 200 people onto this event, year on year?  What’s the hook?  What will make people choose the James Whale Fund for Kidney Cancer instead of something else?

I really don’t have any real answers to this, but plenty of ideas

• Clearly, we’re going to have to make it good … year on year.
• Get each of the major cycle shops (like Evans and Cyclesurgery) to put adverts up on their web-sites and in their shops
• Advertise in the cycle trade journals
• Write articles for one of the trade journals on this years event

However what I really want to do is to tap into the family and friends of Kidney Cancer patients.  I think this is where we could make this event a really special thing.  I love the fact that as a Kidney Cancer survivor myself I can give back by taking on this type of challenge, and there has to be more folks like me that feel the same way.  I have my health, which is the one thing I can give.  If you’re in the US or anywhere else in the world this could be a great way of tying it into a European holiday.

So to all you fellow survivors or patients, pass this message onto you nearest and dearest, and to your friends.  See if they want to come along to next year’s event.  Lets see if we can grow this event into something really special.

If anyone has good ideas or ways to push this then please let me know, I could use all the help I can get!

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

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Posted under Arch To Arc 2010, Arch To Arc 2011, General

It was such sad news to hear today that Tony Clark, co-founder and Chair of Kidney Cancer Canada passed away.

I had the privilege to meet Tony last year when he and Deb Maskens spoke at the James Whale Fund patient day in London.  Their talk had a profound impact.  To see how much has been achieved by Kidney Cancer of Canada in so little time was truly awesome.

Tony, for me you had the capacity to inspire me and others. The legacy you have left will surely grow based on the foundations you’ve helped create.  You will be sorely missed.  Rest in Peace.

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Posted under Andy Thomas, General

It’s been an interesting few weeks for me since I came back from my trip from France. I dont seem to have had the chance to stand still and it looks like my days of unemployment are coming to an end (shame). I start a new job on monday as a part-time consultant/contractor. Now part-time to me means 3 days a week, but I suspect they may want a little more out of me initially, but I’m so lucky to have found a part-time position that I’m more than willing to take the rough with the smooth.

On the Arch to Arc front we’ve got another addition to the riders bringing our total up to 15 which I think is fantastic for the first year, and even better we’ve reached over 80% of our target of £20,000 which I think is absolutely amazing at this stage, so yet again a big thanks to all the riders who’ve been plugging away.  Looking at all the facebook pages and blogs training has started in earnest for most of us …. only 2 months now!! Having done it once I’m really excited about doing it again in a group, it’ll be great fun.

I’m going for a cycle with Trevor Coultart (one of the riders) this evening which should be a giggle, he’s set the course so I’m in his hands.  I seem to be raising my average speed gradually but I have to admit I’ve been playing more music and generally fiddling around at home …. I really should have being out there on the bike.

On the Kidney Cancer front it’s also been exciting times, with the election looming Cancer is getting a good press as the parties jockey for position, if you want to see some of the news and how hard the likes of Clive Stone and Rose Woodward have been working then check out this link and you can read through a selection of press items.  I received a typically patronising letter back from my current MP when I asked for help on the Afinitor issue (so I know where my votes NOT going).

It’s also worth noting that the Kidney Cancer Association (one of the Kidney Cancer groups based in the USA) are coming over this year to hold a Patient Day and the James Whale Fund welcomes them to the UK.  I would suggest you make a note in your diary if you want to attend. It will be interesting to see a different perspective and how they are dealing with this in the US.

Some exciting news is that they’ve unearthed a Kidney Cancer Urine test that potentially identifies certain proteins that can indicate the presence of Kidney Cancer, this will be a big leap forward and should mean early diagnosis is quick and simple cutting down on the number of deaths each year.  Kidney Cancer is known as a silent killer in that symptoms dont often display themselves until the later stages of the disease, and it can often be too late, if caught early enough surgery is usually all you need and this Urine test will go a long way to helping …. so bring it on!!

It’s going to be a busy summer in the world of Kidney Cancer in the UK so watch this space and the news feed on the James Whale Fund web-site to find out what’s going on.

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

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Posted under Andy Thomas, Arch To Arc 2010, General

Simply Red are going on tour for the very last time, I have got four tickets to see them at the O2. This will be on the last date of the final tour.

I was pleased to be able to get the ticket. They are a part of my past.

The last time I saw them was in May 2003 at Wembley Arena. The Home tour.

I stood in the queue with my wife, watching the world go past. I turned around and thought “where are all these old people going”.

And then the realisation, they were joining the end of the line. I was part of it.

We were all that bit older than when Simply Red were last on the road. In fact Mick mentioned the age thing and how the press had given him a hard time for not being a slim and young and beautiful creature. We didn’t care; we had grown up together and his voice…

So that was Simply Red and it was simply very good.

The next day I got up for work. Normal routine.

I went for a pee and that was when my life changed.

Simply Red…that was the colour of my pee.

I had, at one point in my life, worked in a hospital (or two) and with my great depth of experience I knew that having the toilet look like I had tipped a bottle of Chianti down it was not right.

I said nothing and did nothing. Off to work and later on I went to the toilet.

Nothing.

The clearest freshest pee you ever did see, it could have been Evian.

So, I rationalised and googled and thought well, although I had not run a marathon exercise and exertion could be the answer, I had been pretty well down with it at Wembley and I did shuffle my feet a bit and stand up almost the whole time.

No that was not really likely to be the cause.

A stone, I had renal colic once, it must be a stone that is a common cause. Oh, but no pain. A little one then, chips, that will be it.

Of course it happened again and the pattern repeated. Blood, clear, blood, clear.

I went to Coop and got a tea strainer. Yes really. I started to pee through it to see if there was a clue or two. Looking for that chip, awaiting the stone I knew was not really there. Caught a clot or two, they were tiny but I caught them.

I don’t really remember how long that went on for, not long. I drank a lake full of water to “flush out my system”. That failed as well.

I went to the doctor and explained it all, he was not too concerned and whilst some fast track was available if a nasty thing was suspected I was just routine as far as he was concerned so I awaited an appointment at the man clinic.

The day arrived and I trotted off by myself. First a chat with a doctor and then much to my surprise a cystoscopy (a look into my bladder). Now I was surprised because when I was a hospital worker this was a day case with a rigid metal tube thing and a general anaesthetic.

Oh no, not know.

A bit of local gel up the ever shrinking old chap and a flexible telescope affair. You get to see your insides on telly, so that’s OK then!

Nothing. They found nothing wrong. Back to the ancient magazines and a go with the ultra sound lady. Now these lovely and experienced professionals are not allowed to interpret or comment on what they see but the clues were there. A quick scan both kidneys and then, “can you roll onto your right side”,” just having a problem seeing the left properly”, “OK, just a little longer”.

And the capture of a still image or two.

The clues were there.

The clues are always there.

Then the wait to see the doctor again. Called into a room, too many people in here. Sit down please.

“You have a tumour on your left kidney”. “You will need an urgent CT scan”. “You will have to have the kidney removed”.

“I’ve got what? I’ve got cancer”.

“Yes” he said.

“But I’m only 42″

“This won’t kill” said a kind faced nurse.

“How do you know” I replied.

“Is there anyone with you” someone asks.

“NO”

“Would you like to sit here a while” The kind faced nurse asks.

“Will it make a difference?” There was no reply.

I sat a bit, trying to take it all in. It was burnt on my brain at that moment never to be erased. Not capable of erasure.

I drove home; I had been out of the house a few hours. In those days, with young kids around my wife had a great job which she could do from home so she was there, waiting for me.

“Hello, how did you get on?” she called down the stairs from the home office set up in the spare bedroom.

“Not too good…”

And so it started, it was not just about me and sorting this out, it touches so many people around you. Like telling the kids the holiday is cancelled because I have to have an operation and telling my Mum the news. We lost my Dad to cancer some 8 years before this.

Then there was the NHS who had a very different idea as to what urgent meant to my idea. There is too much to say on that subject, perhaps for another time. Suffice to say I was able to choose to be treated in the private system as a self pay patient. No insurance but we could find the cash.

I became a cancer patient. I went for some tests. I checked out my worth dead, but it was too late to change that. Life insurance is still a problem; thankfully I was in a good pension scheme with death benefits and had insurance already in place.

Surgery came and went; the day of the operation I had not had a single symptom for three weeks. I had never had any pain or discomfort.

I am so please I went to the GP. Had I waited it would have gone away and by the time any sign or symptom returned it could have been a very different story. It would have been very easy not to go, be a bloke about it all, but I think I always knew this was something pretty wrong. I do not exaggerate the colour of my pee.

I got back to work 10 weeks later and entered the system for routine checks, a cycle of fear and despair followed by relief.

And then after 5 years they don’t want to see you any more. Now that is full of mixed feelings. Nice to be free of the checks but what if…? How will I know?

At my last scan it was pointed out that my remaining kidney was some 30% bigger than it had been before it was all alone. So now I realise I don’t have a beer gut but an enlarged kidney pushing all my insides forward!

I get a weird cramp every so often, where you should not get cramp, just to remind me of it all. But I don’t really need reminding.

I do loads of stuff I may not have done before, a bit of the yes man syndrome. But in so many ways despite it all I have reverted to type, getting annoyed or frustrated about stuff that really does not matter.

So Simply Red at the O2 in December. I am sure it will be a great night out.

I will try not to dance about too much, just in case.

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Posted under General, Peppers

Patient Advocacy

Well  this is how I explain  what it means to use the title a ” Patient Advocate” To me it   means putting the interests of  Kidney Cancer patients first and foremost and having the experience and knowledge to be able do that.

Julia Black and I have been advocating for rights for Kidney Cancer  patients, since way back when. It was in  2006  that we started this battle and sadly it is still going on today. Only the drugs have changed as more advances are made in our treatment options - but we are still thwarted  by the NHS and N I C E  who will not allow cancer patients to have these drugs funded by our  NHS.

Julia was one of the first cancer patients to fight the battle for the right to access to clinically effective drugs and to challenge rationing of cancer drugs by N I C E, who  stopped cancer patients getting the drugs their Clinicians wanted to prescribe.  It’s a long story and one which needs to be told, all the different patients and families ; the tragedies and the triumphs. Families who then joined in to try and help Mums and Dads and brothers and sisters, Julia and I have files full of letters and emails  and some long  hard fought battles took over 500 letters and months to fight. It was a terrible time and a disgraceful episode in the history of the NHS BUT STILL OUR FIGHT  GOES ON.

Julia was in the brave group of breast cancer patients  who fought, not only to get the drug she and other desperately needed (Herceptin) but  then  had to fight the funding bodies and regulatory bodies  like N I C E to get the drug approved for others .

I met when  Julia  was trying to help a Kidney Cancer Patient friend  called Keith Ditchfield who was trying to get funding for the drug Nexavar. Julia’s knowledge and contacts were working for Keith and through Julia’s efforts Keith was finally funded to have Nexavar paid for by the NHS – one of the first in the Country if not the first. We thought we could take Julia’s methods and my knowledge of the Cancer Networks and PCT commissioning processes  and make it work for the many other Kidney Cancer patients who needed the new innovative  drugs that were being used all over the world to treat Kidney Cancer except here in the UK.

I will continue the tale of what happened as when I have the time, but in the past 3 weeks mine and Julia’s time in increasingly  taken up now with a new tranche of kidney cancer patients who are now being denied Everolimus ( AFINITOR) a new drug manufactured by Novartis.

But please don’t just soldier on alone, do remember there is help here at the James Whale Fund for Kidney Cancer  www.jameswhalefund.or and the Kidney cancer Support Network  www.kidneycancersupportnetwork.co.uk  -  we are here to help each other.  Julia and I  are cancer patients ourselves, we know what this is like and we are doing this for no other reason than we believe cancer patients have a right to proven licensed clinically effective drugs. Please don’t  go on feeling you are on your own with no-one to help you.  Don’t feel you need to pay out for professional advice -  knowledge is power is this situation and we  can unlock that knowledge  for you to help you get the drugs you need. Our methods are used all over the Country by other  bona fide cancer charities who are trying to help their patients access treatments. Don’t be afraid to ask for help – we are  a community  of Kidney Cancer Patients and we need to look after each other. Which is what we  do here  at the JWF and the KCSN – come and join us and together we  will campaign for kidney cancer patients to have  NHS  treatment  “the right treatment at the right time” !!!

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Posted under Afinitor(aka Everolimus/RAD001), Campaigns, Cancer Drugs, General, N.I.C.E., Rose Woodward, User Posts

Well, we’re all back from the Vasaloppet Cross Country Ski week in Sweden.  What an experience!  Over 50,000 people entered and finished their various races over the course of the week.  Importantly the four of us who went all finished, which was the icing on the cake!

It seems like a long time ago that we made a commitment to do this race, although in reality it was only 6 months ago.  It would have never have crossed my mind to take this up as a sport, but I’m so glad I have.  Can’t wait for the snow to come back next season!  A big big thank you to all the teachers at the www.rollerski.co.uk (Iain, Ekaterina, Yevgeniy, Alan and Mary) for all their patience, without the rollerskiing and the trip to Austria there was no way I’d have stood a chance.

We went for the final race, held on Sunday.  It’s a 90 kilometre Classic style race between two towns Salen and Mora.  It was an excellent course through undulating and pretty countryside.  It’s amazing how much your mind blanks out the pain, my memory says it was just a quick jaunt over a few hills to the finish, however the reality was that for me it was an 11.5hr gruelling endurance test, much harder than anything I’ve ever done.

We stayed in a little ski resort near Mora called Gesunda which meant we had to be up by 3am in the morning to be at Mora and the bus to Salem by 4:30am.  This was the only part of race organisation they made a bit of a mess of.  Getting to Salem from Mora is not a problem in itself, however there were so many entrants this year that the traffic jam about 6k from Mora meant that quite a few buses missed the start at 8am.

There were around 16000 people in the race so you can imagine it was a bit of a hustle at the start, but to be honest even though I fell over about 200m into the race it was nowhere near as bad a jostle as I thought it was going to be.  Perfect weather, not to hot, not too cold and a bit of sun every now and then.

We started in the back pen (pen 10) which means we were very much with the masses, so it was a bit of a shuffle as we all got going.  It starts off on the flat for about 500m and then you have a right turn up a very long and steep hill.  This was basically a traffic jam and we all waddled like ducks up the hill trying desperately not to fall over.  If I was to do it again (which I want to do) I’d try and get a better seeding because I reckon if you could get into Pen 8 or 7 it would make a huge difference to your time, and the tracks would be in better condition.

Once at the top of “the hill” the race opened up a bit as we pulled into the first station (Smågan).  From there on in it’s net net down hill although I have to confess I found the flat sections tough work.  Top tip for next time – don’t do 42k of double polling at Dorney Lake a few days before the race, which is was what I did so I was a bit drained from that and ended up doing far more diagonal striding than I should have (that’s my excuse and I’m sticking to it!)

There are seven strategically placed stop off stations along the way which seem to come along at the perfect time i.e. just before you decide to quit.  A few cups of blueberry soup, some bread and a bit of water and you’re off again.  Most people break the race down into a series of 8 sections and just focus on one at a time, if you just see it as 90k it becomes overwhelming.  A tip from a Swedish chap who’d done it 10 times told me to ignore the first 50k and not look at the signs telling you how far you’ve got to go (which are placed ever 1k).  Once you’ve got beyond 50k you can start looking at the signs …. anyway, it worked for me !

The long and short of it from my perspective is that this is a mind over matter experience, your body screams for you to pull over, find a bar and relax in front of a warm fire and a cold beer.  You have to dig deep to convince yourself to carry on and get to the end.  I have to admit that I got to the third station (Risberg) and felt like jacking it in.  The only thing keeping me going was the thought of having to tell all the people at home that after all the talk I’d failed.These feelings soon passed and I started chipping away at each section.

There were some exciting bits on the way, made even more so because we were at the back and the track was well worn, for example there is a very steep downhill bit that requires you to snow plough down … the only problem is that over 12000 people had already been there and it looked more like a downhill mogul field …. lots of crashes and near misses (I survived!).

Once I got to Eldris (9k from the end) I had to keep on telling myself “it’s just a quick training session in Hyde Park with the Rollerski club, don’t stop”.  It got so dark at one point that they lit the track with candles … which was nice, although I don’t think I derived much benefit from it.

If you want the full details of my race then here’s the link.

To put my humble 11.5hr time into perspective the winner did it in 4:02 …. which to me is unimaginable as it means he was travelling at an average speed of nearly 22 kmh!  … how can anybody be that fit!

From a cross country skiing perspective I’ve learnt a lot and feel I can step up to the next level and enter some shorter races to build myself up to next year’s main race. Now we know what’s required I know I need to do more endurance training than I did.  I have to say though if you’re looking for a sport to get into you could do a lot worse, it’s low impact, uses every part of your body, highly aerobic and you just dont seem to get the injuries you get with running.

The event is well organised and you dont have to think much for yourself, bags are taken and returned, showers and food are taken care of, transport is easy and more importantly there is food, drink, waxing, medics all the way along the route so you really dont need to take much at all.  I made it with a bottle of water (which I had filled at stations) and I only had 1 energy gel.  I saw people with ruck sacks and all sorts of caper which can only have slowed them down.

Overall the exhilaration at the end and the overwhelming sense of achievement is worth every ache and pain!

So, will I don it again? … Absolutely, and this time I will be looking for sponsorship for James Whale Fund for Kidney Cancer. I was very reluctant to ask for any money this year because of the high probability of failure, however now I know it’s more than possible I’ll be looking for a better time and some cash!!

Those of you who are feeling flush and want to donate this year then please feel free to click on one of the links below for my next challenge which is the Arch to Arc cycle ride from London to Paris in June.

Please sponsor me by clicking on either of these links VirginGiving or JustGiving

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Posted under Andy Thomas, General

 

For a long time now several of us who are trying to raise the profile and knowledge of Kidney Cancer have been talking together and swopping our trials and tribulations. Well, last year a few of us got together to try and get equity in treatment options, drugs and strength in numbers  to help argue our case with regulators and manufacturers – we want to improve the availability of clinical trials, get consistent information across Country borders and be able to support each other when we are looking at new KC research, treatment, funding etc.

so…… this letter is from those of us who have put together a steering group to make this dream of a stronger and united coalition into reality; The International Kidney Cancer Coalition.

Please let me know what you think of the idea, we now have several other patient groups in different Countries who have joined us. We have extended invitations to all the Kidney Cancer Organisations  to join us and make our voice louder and stronger….

IKCC – An Open Letter to the Kidney cancer Community  - click to veiw the actual letter in this  PDF  file or scroll down for   simple text version.

An Open Letter to the Kidney Cancer Community

Bad Nauheim, Germany, the 8th of March 2010

Dear Patients, Caregivers, Patient Group Leaders, Medical Experts, and Industry Sponsors:

This open letter is about the beginnings of IKCC, an international network of kidney cancer patient groups, along with background information about funding of this initiative.

What are the objectives of IKCC?
IKCC stands for International Kidney Cancer Coalition. It will be a network of independent kidney cancer patient support groups from around the world. The organization was born from a strong desire among various national patient groups to network, cooperate, and share experiences.

IKCC will be a supplement to existing organizations, and we hope to future ones as awareness of kidney cancer grows around the world. Our aim is to network efficiently, to share information, to develop and promote best practices in patient support and patient advocacy, and to meet unmet needs expressed by the various groups. All kidney cancer groups are welcome, as are individuals interested in starting advocacy and support groups in their own countries.

Why an international coalition?
Experience with other rare cancers proves this type of international network is valuable, supportive and inspiring. Most cancer associations, especially for rare cancers, have limited resources. It makes absolute sense to share information, to cooperate, and to work on similar projects together. Some examples of successful international coalitions:
• International Lymphoma Coalition – a worldwide network of lymphoma groups
• International Brain Tumour Alliance – an international brain tumour advocacy group
• Myeloma Euronet – European network of 42 groups from 20 countries
• Sarcoma Patients EuroNet Association – European coalition of 17 groups from 13 countries

The preliminary mission of IKCC is, “Networking, collaborating, and advocating on a global level to better support patients in each nation.” We believe that together we will be able to speak as one voice to expert panels and to the industry on behalf of many kidney cancer patient support groups.

How will IKCC be funded?
IKCC’s funding policy is based on the well-known “Code of Practice Between Patients’ Organisations and the Healthcare Industry” of ECPC, the European Cancer Patient Coalition. ECPC is a well-established organization comprising over 300 European national and international cancer patient organizations that have adopted the code of practice. IKCC already adheres to this code. After registration as a legal entity, IKCC will be a member of ECPC. In the meantime, each organization involved in IKCC is governed by the rules of transparency and ethical relations within their own country.

Our first conference – May 14-16, 2010:
The main objectives of the conference in Frankfurt are to learn more from each patient organization and to evaluate the future objectives and role of IKCC.

All the work for the conference has been done on a voluntary basis alongside our regular work for our national organizations. To cover costs for a global conference, we asked various pharmaceutical companies to support this international project with unrestricted educational grants. We are pleased to have their support. When agreements are finalized, we will publicly announce all sponsors in accordance with the ethical demands of full transparency in funding.

In conclusion:
IKCC will be a friendly, positive, welcoming organization centering on a common cause: Every day we see patients dying from kidney cancer. We would like to do all we can to achieve the best support, care, and treatment for kidney cancer patients and their families everywhere in the world.

With best regards on behalf of the IKCC Steering Committee:
Dr. Marion Beier (DE), author
Markus Wartenberg (DE), author
Other members:
Tony Clark (CDN)
Vandana Gupta (IND)
Deborah Maskens (CDN)
Andrew Wilson (UK)
Rose Woodward (UK)

Association: IKCC Registration pending.
Phone: +49-6032-9492-439
ikcc@lebenshauspost.org

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Posted under Campaigns, Cancer Drugs, General, Rose Woodward

I was asked the other day by one of our Kidney Cancer warriors in the US about the NHS and what it really means to us day to day in the UK, and would I mind writing a blog on it.  Boy, what a task … take one of of the most widely talked about and explosive topics in the UK, boil it down to a few paragraphs of explanation and then hope to heck you wont get flamed all over the place.

So here goes!  lets keep it simple.

The basic premise of the NHS is to provide comprehensive free healthcare to all.

You can see from the basic diagram below how the organisation breaks down from a governance perspective

Right at the top we have our government (parliament).  The Health Secretary is the person who has responsibility (via Parliament) for the NHS, and has accountability, and responsibility for setting direction and budget. The Health Secretary is also responsible for the Department of Health.

The Department of Health is responsible for running the NHS.  It sets targets, allocates money and generally oversees the management.

The Strategic Health Authorities (SHAs). There are 10 of these (I believe) around the country and they are responsible for ensuring that government policy is implemented at a local level, and they also operate as regional representatives of the Department of Health.

Beneath the SHAs we have the Primary Care Trusts (PCTs), and this is where it starts to get a little complicated (for me anyway).  They are one of the biggest parts of the NHS and spend around 80% of the entire budget  There are 150+ PCTs in the UK and they have responsibility for “buying” the care for the local population.  Sounds odd doesn’t it? Basically it means that if you need treatment e.g. an operation the PCT buys that service from the local NHS hospital. Effectively the PCTs have control over how the money is spent, what treatments are available and what is not. So when we hear about NHS Managers, it’s generally the PCT managers they’re talking about.

Next we have the Hospital Trusts which is where the majority of healthcare workers can be found e.g Consultants, Drs, Nurses etc.  All hospitals are managed by a Hospital trust, there are even different types of trust e.g. a Foundation trust, Ambulance Trust, but it’s not important for this basic description. The trusts are responsible for negotiating with the PCTs what services they can provide based on the budget.

So where do N.I.C.E. fit into this?  Well N.I.C.E. is the independent body that decides which drugs and procedures the NHS should provide.  They offer guidance on these treatments and drugs for the PCTs.  If a patient needs treatment outside of this guidance then that patient will likely have to go through an appeal process with the their local PCT (which is why we hear in the media about the PostCode lottery).  For Kidney Cancer patients in the UK this is where our campaign focus has been, to ensure that new drugs are given positive guidance. At a very simple level if N.I.C.E offer positive guidance on a treatment or drug then the PCTs are obliged to provide it, if not the patient is dependant on the individual PCTs ability to fund the treatment.

So that’s a really really basic description.  I’m sure I may have some of the detail wrong but it should give readers a fair idea about what’s going on.  I wont go into my personal views in this post … I’ll do that next so as to separate the two things.

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Posted under Andy Thomas, General, N.I.C.E.

Today we hear that once again  N I C E have refused to provide NHS  kidney cancer patients with  licensed  cancer drugs for kidney cancer. Sometimes I despair of this NHS. In the same week that Gordon Brown announces that each cancer patient will receive a one to one care plan and home visits from nurses, the same cancer patients are told they will be refused treatment that is readily available throughout the rest of world. And not just  Countries like the USA where insurance companies hold sway over who gets what, but countries like France and Germany  and Sweden who operate social welfare systems. What is the UK doing wrong; why can’t we look after our own desperately ill cancer patients in the same they do in the parts of the EU. Will we ever  achieve their high standards of care while UK patients are refused treatment with clinically  effective and proven cancer drugs.

Perhaps someone from N I C E  can explain their actions to the kindly people throughout England who run relays in aid of cancer research, who hold coffee mornings, who clean cars on Saturdays etc  and do so because they want  cancer patients in their communities to receive the best care possible and not condemned to die prematurely because the NHS  can’t manage it’s  own money despite the huge salaries they pay their administrators.

Afinitor,  the drug are refusing to pay for  to help kidney cancer patients,  will cost  less than £100 per day – last week a Director of Commissioning  ( thats costing and buying services to you and me) for a PCT  in London was offered a salary of  £800 per day !!!!!!! . 

Kidney Cancer patients are ill & many are desperately distressed by what they & their families are going through, but we are not stupid. We know that NHS funds are not infinite, but when  for instance,  someone ( who exactly? )  at the Department of Health can sign cheques for £40,000,000 ( forty million pounds) for legal contract advice about the NHS IT programme that doesn’t exist, how do we rationalise that to cancer patients who are told they are too expensive to treat ? Why do we tell patients  their treatment is not a cost effective use of NHS resources when we have Health Authorities sitting on unspent surpluses in their annual accounts. Are cancer drugs are too expensive at £100 per day when we pay Directors of commissioning in PCT’s  £800 per day ? Will we soon reach a time when  the NHS will stop treating ” expensive”  serious road traffic victims, will we stop offering “expensive” dialysis at £35000 pa ,who will say if  heart or lung transplants and after care  are  too expensive? 

I have a dear friend who has terminal cancer who said to me – “being told you have terminal  cancer is not the worse thing in the world, far worse is being told there is a  treatment that will help you but you can’t have it”. That is the reality kidney cancer patients are living and dying with. Do you want your Mum or Dad or son or daughter to spend the last few months of their life with these words ringing in their head. “You are not worth keeping alive”   It is an unforgivable way to treat anyone let alone cancer patients  and their families !!

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Posted under Afinitor(aka Everolimus/RAD001), Cancer Drugs, General, N.I.C.E., User Posts