Kidney Cancer Bloggers Have your Say

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.

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Posted under Andy Thomas, General

Let’s see if this has any impact.  I’ve cc’d my local MP and prospective MP and Sir Andrew Dillon as it usually forces them to reply and aknolwledge

Dear Professor Littlejohns,

I am writing to you directly as a Kidney Cancer patient in regard to your decision to deny Afinitor as a second line treatment.

Why if N.I.C.E. openly admit that this drug shows clear clinical benefit do you not seek to approve it?

As you are well aware there are very few treatments available to Kidney Cancer patients in the UK and as such when one comes along it seems only fair to approve it.

You seem (as usual) to have based this negative decision purely on cost.  The QALY calculation you use for some reason is not disclosed to the public due to  IPR which appears ludicrous given this is a public service.  I think it would be fair and proper to make your process transparent and available to the public at large as these are the people you work for.

As a supposed independent body I would expect N.I.C.E. to act as such and not just follow the direction of the Department of Health.  I expect N.I.C.E. to work in the interest of the patient NOT in the interest of government policy.

What real representation did you have from patients?  How much weight was attached to patients as you came to your conclusions?

It is also extremely unfair to only give the public (patients) a few weeks to put their case together.

Why are we given such little time?  If you want a response from patients then they need to be engaged at an earlier stage.  It is outrageous that we only have to the 2nd March to put a case together.

These drugs offer precious time to patients and families.  We are not talking weeks we are talking significant numbers of months and years (as you are well aware).  What cost do you attach to this?

I would also like to add that as a rarer cancer we are not looking at a significant number of patients that need these type of drugs so why do you attach so much weight to cost when we are talking 100’s rather than 1000’s of people?  At £100/day this is not a significant cost.

Kidney Cancer is not a large drain on NHS resources in comparison to other cancers,  so why are we treated in an inferior fashion?  Is it because we are small minority that can’t fight back?

All we ask for is a level playing field, this is clearly not the case and I would expect you to be addressing this in the interest of the patient NOT in the interest of the people who pay your salaries.

I was also shocked that Ann Keen chose to announce that she was spending money on a new design of hospital gowns the day you announce that you will not approve Afinitor as a second line treatment, this was heartless and cruel.  Disgraceful that we seem able to waste money and resources on items such as these and yet deny patients vital drugs that can give them a real quality of life.

Clearly there are hundreds of other examples within the NHS where resources are being wasted (not least of which is the NPfIT) but there is little point in documenting them each in detail in this letter as you are well aware of it yourself.

I urge you not to respond by saying that you are not responsible for any spend within the NHS or for government policy, rather I would like to hear how you will engage with the government (DoH) on how we can stop this waste. I’d also like to hear how you will start to engage with patients at a real level.  The NHS is a wonderful resource and it is sad to see it being destroyed by bureaucracy in this way.

Please realise that N.I.C.E. is meant to be an independent body working in the interest of the patient and as such we expect you to behave as such not to just throw cost in our faces each time a new drug is presented that offers valuable time and quality of life to people.

I respectfully ask that you reverse your cruel decision and allow Afinitor as a second line treatment for Kidney Cancer patients.  I also respectfully ask that you review what is clearly a floored approval process.

Yours Sincerely

Andy Thomas

97 Sheepcot Lane

WATFORD

WD25 0DU

cc Sir Andrew Dillon

cc Claire Ward MP

cc Richard Harrington

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Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

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.

Well I suppose it would be arrogant of me to presume that the leading headline on the health section of the BBC’s website would be about N.I.C.E.s disgraceful denial of Afinitor as a second line treatment for Kidney Cancer patients, however I was rather hoping that it would at least feature somewhere on the BBC Health news, but no.

The great thing though is that they’ve given us a smashing example of how we waste our money in the NHS on trivia that nobody cares about and yet deny valuable life extending drugs that do matter.   Not much logic going on from what I can see. 

So what’s the waste I was talking about?  Well apparently we all care deeply about “backless hospital gowns” and how our dignity is compromised by these odious garments. I have to admit that was the first thing on my mind as I was carted off to theatre for my Kidney Removal (nephrectomy), it certainly wasn’t the fear of maybe not coming out of it, or the fear of a cancer diagnosis, oh no, the fist thing I thought was …“Does my bum look big in this?” (and for those of you wondering, yes it did look big …… very big!)

The Offending Article

Sorry to make a joke of this but come on the BBC what were you thinking? yes it’s an interesting(‘ish) article, but not one mention of  N.I.C.E.s decision today on Afinitor anywhere on either the UK section or the health section of the website?  In an ideal world we’d have an NHS system with enough cash floating around to chuck away on “nice to haves”, but somehow I don’t think we’re there yet.

Maybe I’m doing old “Auntie” an injustice and there is mention of the decision on their website, in which case I apologise unreservedly, and anyway thanks for pointing out that Ann Keen (Health Minister) sees this as a burning issue.  That £25,000 you gave to the design council for the gowns could have funded 5 cycles of Afinitor for a patient……. Nice one Ann!!

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Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

Here’s the mission statement (or purpose) of N.I.C.E. according to the front page of their web-site

NICE is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health

So you’d think with this kind of remit they’d be working in our favour, and when I say “our favour” I mean the population of the UK and specifically its patients.

Yet when it boils down to it what they really do is to create negative guidance that allows others to wash their hands of the situation, such as the government who can just say “well this is down to N.I.C.E.”.   It also enables PCTs to deny patients treatment despite what the specialists say.

I’ve been to meetings, received mails, read articles where time and time again specialist oncologists are screaming for drugs that they know will help and yet they are denied.  It’s an appalling state of affairs and I would hate to have to be the one that has to give a message to a patient that says “yes, there is a drug that could help, but I’m afraid you can’t have it because it costs too much”.  It’s inhumane.

You can tell this is N.I.C.E.’s stance because of the clear statement again made on their front page

Disinvestment. Decommissioning. Saving money. Whatever you call it, the NHS faces an unprecedented financial challenge.

Use NICE guidance to help you to cut costs and maintain and even improve services.

Ok, so it would be churlish of me to not admit that the sentiment is that they are there to help, but it’s how they go about it that gets me.  This statement is all about costs, where does it really address the need of the patient?

I can plainly see that an independent body such as N.I.C.E. that looks at new drugs and treatments and offers guidance on their usage is no bad thing.  However the guidance is just that… guidance, but the PCTs use this as ”carte blanche” to deny patients, on what basis? Certainly not on clinical grounds.  No, it’s just cost.

I’ll use the example of Affinitor which has just been cruelly denied as a second line treatment for Kidney Cancer patients.  So, here we have a drug that has been clinically proven to work, every specialist (that I know of) in the country is backing this up.  A drug that’s been approved for usage in other European countries and in the US and yet for some reason (cost) we can’t have it in the UK.

What I would love to see N.I.C.E. do is to fight Whitehall on our behalf, not to just sit there and do the bean counting for government.  This organisation seems able to pronounce death sentences on patients by denying them drugs that extend their lives, and yet it seems unable to fight the waste in the NHS and other areas of government.  They are closer to Whitehall than any of us, surely they can see that waste AND actually fight to do something about it?  Why on earth, if they are truly independant would they seek just do the govenerment’s bidding?

Why leave it to patients and the charities to fight? I find it so had to believe that they are impervious to the waste, they probably see it more than we do.  Help do something about it!

So come on N.I.C.E. do what you’re supposed to do, do what you were setup to do, stop being a bunch of bean counters, stop measuring everything against some Qualy calculation.  Stand behind the patients and population you proclaim to be helping.  

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Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

Well, I got into a little bother yesterday for publishing yesterday’s blog so I’ll stick to a topic I know I’m safe with (it will be re-published later)

The great news is the Arch to Arc cycle ride has reached well over 50% of the £20,000 target and we’ve still got a lot of time left.  Keep up the good work everyone! This is really going to make a difference.

Cycle Weekly have kindly donated a number of copies of one their latest editions which contains a pretty good training plan to get people from 0 miles to 100 miles in a day.  We’ll be sending these out shortly to each of the riders along with a registration form that we want everyone to complete.

On the sporty front I’m getting more than a little nervous about the Cross Country Ski marathon in a few weeks time, I don’t feel anywhere near enough ready for it.  I just wish we could have some more time in the snow before we go.  Other people are doing seeding marathons before the event and our Austria marathon seems a long time ago now.  I keep on telling myself that it’s not a race and if I dont complete it this year it doesn’t matter and there’s always next year.

However, at least I feel my cycling’s getting better.  I even dug out my birthday card from my sister this morning to give me some motivation.

The Birthday Card

It was great to receive this, much as I hate the Moon Pig adverts the output is great.

I’m pretty much ready to do the exploratory ride to Paris and it’s just a case of picking the right few days now. Hopefully next week, but we’ll see, it’s very dependant on a few commitments I have and the weather.

So there we are, a short update.  Just a few more riders to confirm and sign up now and then we’re off!

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Posted under Andy Thomas, Arch To Arc 2010

I need to make some changes to this post, it will be back again soon!

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

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.

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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.

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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.

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Posted under Andy Thomas, General