Kidney Cancer Bloggers Have your Say

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.

The Start of the Race

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!

The Winner!

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

What am I talking about?  Well, I’d completely forgotten about this.  I was looking through some old photos this afternoon of my trip to San Francisco last year and I came across this gem.

Recognise it?

It’s actually the “National Marine Sanctuaries” logo … spookily similar to the James Whale Fund logo eh?  I found it by chance as I was running through “Crissy Fields” on a weekend jog.  It really struck me because not only is the Whale’s tail very similar but the colour scheme is so close as well.

Anyway, I thought I’d share it with everyone.

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

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Posted under Andy Thomas, General

I’ve got got admit in a bit of a spin at the moment because I still haven’t got any clarity about my current job which makes it very hard to plan out my immediate future.  I’m sure it’ll work itself all out in time so i’ll just have to ride it out and see what the outcome is.  In the scheme of things there are far worse problems to be dealing with, so it’s not a whinge.

On top of this I’ve only got about 5 weeks left before I’m due to do a double cross country ski marathon in Sweden called the Vassaloppet, it’s a 90km run up hill and down dale. Holidays are supposed to be relaxing chill out thing aren’t they?  what were we thinking? I was stone cold sober when I agreed to this so I’ve no-one to blame but myself…. so there’s no backing out. I did however have the common sense not to ask people to sponsor me for it this year because I dont rate my chances However if you do feel the urge to give me cash then I’d love some for the Arch to Arc cycle ride.

Vassaloppet Race in Sweden

To be frank I haven’t quite got over the injuries I sustained in Austria a few weeks ago when we did a 42km Marathon.

It was one heck of an experience and hasn’t put me off in any way although I’m not convinced I can get to the 90Km this year …. I’ll be happy if I do any over 50Km. If you are thinking of taking up a sport and want something that gives you a full body workout without the high impact of sports like running then this is the one for you.  Within a week we were all taken from virtually no experience on snow to a full blown marathon, and we were all different shapes and sizes.

Me in the Austrian Marathon

You maybe wondering why there are no other competitors around me in the picture above, sadly that’s because there weren’t any   I was very much on my own at the back, but we were so lucky with the weather and views.  I used to live in the French Alps, but I have to say the Dolomites are far more striking.

So my only chance to get fit with all these injuries is on my bike which I don’t think will be anywhere near enough.  I’m trying to do about 6hrs a week on it but I don’t find it’s doing enough, but at least it’s getting me ready for the Arch to Arc ride in June I guess.

So with all this going on I’m finding it hard to focus as much energy as I’d like on the Kidney Cancer stuff, but it’s got to be done.

As part of this I’ve re-branded the Kidney Cancer Bloggers site so it’s a little more tightly aligned to the James Whale Fund’s site …. Let me know if you agree.  As far as the Arch to Arc ride is concerned things are ticking along very well.  We have 14 riders signed up officially and quite a number that have confirmed they will do the same.  The great news is that we have raised over 50% of the target so far which I think for a first bash at this is a tremendous effort by one and all.  I wouldn’t have been able to get this off the ground if it hadn’t been for all the efforts of the team at the James Whale Fund, Nikki and Sarah have worked really hard on this, I feel so guilty…. Thanks!

What’s next on the awareness front for me? I’m not sure to be honest. There’s a big planning session towards the end of February and I suspect much will come out of that.  I’ve been offered some potential free development resource from an IT consultancy which could be useful, however I think we should hold off on executing on this until we have a clear direction of what we need.

I think in principal we have many of the pieces already in place, It’s just a case of consolidating it under one platform rather than the separate entities we have now.  I’m keen to reinvigorate the information provision side using a new CMS solution (Content Management System), having closed down Kidney Cancer Resource I think we’ve left a hole that needs to be filled, recapturing that readership is important.

Anyway, back to the web-site re-branding for me today.  Let me know if you can think of any ideas on the blog-site.

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

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Posted under Andy Thomas, General

With all the work that is going on within the James Whale Fund for Kidney Cancer I’m always increasingly surprised that we don’t see many more people signing up to the forum, blogs and web site.

In the UK around 7500 people per year are diagnosed with this hideous disease.  We know that sadly over half of that number die, which is a frightening statistic in its own right.  Of course a number of the surviving people will have been caught at an early enough stage to be considered as cured (not to tempt fate but I fall into this category), and of course under these circumstances many that fall into the “cured” category will want to try and put it behind them and move on.  This is totally understandable and there are days that I think I should maybe have done the same.  However I felt so strongly about the lack of awareness and information that I took action, and I don’t regret it.

Anyway, enough about me. So where are the others then? The remaining Kidney Cancer patients, the families and friends?

I ran The Kidney Cancer Resource for the best part of three years and managed to build up a daily readership of around 160.  My expectation was for this number to be closer to 1000+ given the annual increase in the community.  But it never happened.  Was I too impatient? Probably, but it did seem very odd to me that given the amount of information available in a standard (wiki) format that the user community wasn’t higher.

I did all I could to raise the sites visibility on search engines like google and got it onto page 1 in most cases, but boy did it take time and effort and an understanding of SEO tactics (Search Engine Optimisation).  By fine tuning these tactics the readership soon doubled, but to me it never warranted the level of work required.  That’s why it made sense to me to close down Kidney Cancer Resource and pile the energy into a single charity in the UK that’s focused on Kidney Cancer i.e. The James Whale Fund for Kidney Cancer.

My main issue is that collectively we’ve been creating multiple sites and organisations around the UK and by doing this all we’re doing is diluting what is already a small total UK readership.  To this extent I saw myself as part of the problem rather than being part of the solution.  So the decision was made to close down and re-focus my efforts.  I suspect I now need to spend more time on SEO tactics for the JWF to raise awareness and readership. But only if they want me to

Part 1 of this was to move the rolling news from KCR onto the James Whale Fund’s web-site.  I’ve been looking at the stats over the last few weeks, and yes there is a gentle increase in the number of site visits but still not enough.  My next step will be to speed up the re-direct from KCR to the James Whale Fund site, at the moment it’s set to 15 seconds and I reckon that might be putting people off.

As a slight aside, there is a Patient Advisory Group within the James Whale Fund (which I’m a part of) and one thing I know we’re always looking for is feedback on the web-site.  Is it delivering what people want? Is the information relevant? Was it easy to find? So, as we’re on this subject please feel free to contact me and let me know what you think. My e-mail address is amt@jameswhalefund.org. It’s important to get this feedback, be it positive or otherwise.

However, technology aside I’m still amazed that more Kidney Cancer patients in the UK are not driven to the fund. My conclusion is that ultimately greater public awareness is the only real way to make this happen.  We could make the James Whale Fund no 1 in the google search engine but that doesn’t always translate into a greater audience.  Yes of course it will have a natural increase, however not at the levels we’re seeking.

When I say awareness I really mean at the grass roots level of this disease i.e. when people are initially diagnosed by a consultant urologist or oncologist. Letting people know at the “get go” that there is help out there beyond just the medical.

I look at what the James Whale Fund offers – help that extends to patient support, campaigning for new drugs to be made available, help with appeals, fundraising, awareness, engagement with the medical community, specific training of nurses, information, patient days.

The list is endless and yet this isn’t visible to patients and carers.  If you want to know what’s available and what’s going on you’ve got to know how to search for it on the web.  This is just plain wrong and it’s one area where the hospitals/surgeries could be more pro-active.  Charities such as the James Whale Fund offer guidance packs that could be handed out to newly diagnosed patients. These should be given as a matter of course, it’s not so tough to get these packs approved by the medics.  Patients need an outlet beyond just our medical teams, it’s sometimes as valuable to be able to talk to people who share the same experiences.  Our consultants, Drs and nurses can’t be available 24 * 7.

This view was really drilled into me last night when a friend rang me to say that a work colleague of his was about to undergo surgery to remove a Kidney because they’d found a tumour, and could this colleague contact me if he needed to talk.  Well, of course the answer was yes but why wasn’t the information available to this person? A simple one page leaflet or pack would have lead him to our support group.

I do believe we need a strong web presence, as a geek I cannot deny this, however it’s time people were guided to this presence by professionals rather than having to stumble across it via some sort of random web search.  Until this time I suspect our daily readership will stay around the 100 – 200 level.

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

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Posted under Andy Thomas, General

I was asked for a comment about the NHS Constition today – had to give it some real thought  because I think the NHS Constitution is a great first step to recognising the real sense of ownership alot of patients feel towards the NHS. We feel passionately about our local Hospitals and the Clinicians & Nurses who look after us. But sometimes patients can feel lost because the NHS is such a huge machine with a life of it’s own, so many different organisations each with their own policies, guidelines and initiatives and it’s easy to feel individual patients to feel they don’t matter anymore.

As a survivor of Kidney Cancer, I have so much to thank the NHS for and I do so on a daily basis . Kidney cancer is a type of cancer which is difficult to treat and I’ve received all my treatment from the NHS which cared me during my illness. But I know other cancer patients who have been let down because “the system” is seen to be more important than the patient. The Constitution needs to be matched by actions at the coal face in GP surgeries, Hospitals and PCT’s and organisations like N I C E.

Patients need to know their views are valued – no more box ticking .

Ever  The Optimist  Eh ??  Rose Woodward  www.kidneycancersupportnetwork.co.uk

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Posted under Cancer Drugs, General, N.I.C.E., Rose Woodward

During the period that many hundreds of kidney Cancer patients were denied life extending drugs and died prematurely ( these kidney cancer drugs are readily availanble in other parts of the world on social welfare systems) the NHS spent £ 40,000,000.00 – YES 40 MILLION POUNDS – on solicitors and legal fees to two companies for “supporting” the NHS to draft contracts about their IT programmes”. !! The answer came in response to a question by Conservative shadow health minister Stephen O’Brien about the amount spent in legal fees for drafting contracts for the National programme for NHS IT in the Health Service. Health minister Mike O’Brien responded: “Between 1 April 2002 and 31 March 2009, the total fee paid to Allen & Overy amounted to £10,309,877 and to DLA Piper UK LLP £28,864,938, although Allen & Overy ceased to advise after 2006.” You couldn’t make it up ……. If this weren’t so desperately sad and tragic and cruel for kidney cancer patients and other cancer patients denied treatment their Clinicians want to precribe, it would be laughable – who decided this money was an effective use of NHS resources ??? I just to know how and why they had to spend this amount of NHS money which should be prioritised to front line care, on legal advice. Do we not employ enough civil servents that they can give the NHS legal advice. If we don’t and heaven knows why not ,then why not go out and employ someone ? you could hire a lot of IT lawyers for £40 million. It is an unbelievable sum – made worse by the fact we don’t even have a workable It system for the NHS and this sum doesn’t include the IT itself just the lawyers for advising about it. How did someone decide this was reasonable. Someone needs to get a grip of what is going on the NHS and fast, some of the managers are out of control !!

I’ve posted this on the Kidney cancer patient forum at www.kidneycancersupportnetwork.co.uk

Am I the only person who thinks this is totally out of order?

Rose Woodward -

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Posted under Cancer Drugs, General, Rose Woodward