First off I have to say I was heartened by what Dave deBronkart has to say on this subject. It’s made me think about why I initially setup KCR and what the motivation was for it. However, rather than go off on too big a tangent lets deal with the main issue that I think Dave is eluding to which is “Who Will Vet The Vetters?”.

This is a tough one and I think his ideas around how to resolve this (or at least improve the situation) are valid. I’ve had a think about these 3 ideas and also had a think about how KCR could look at implementing them:

1. Patients and clinicians should be able to write comments on Medpedia articles. Within mediawiki (the software that runs wikipedia and KCR, and I suspect also forms the backbone of medipedia as well) it is possible to use the discussion tab on each article to enable open discussion. The premiss on Wikipedia is that if there is a debate or disagreement on a subject it is debated in the discussion tab not on the main page. A consensus conclusion is drawn from that discussion and those conclusions are then added onto the main page. OK, so how have we implemented this in KCR? Slightly differently, but hopefully with the same outcome. What we’ve decided to do is direct people to an open forum so the debate can be had there. The issue I’m finding is that we don’t get that much discussion on articles, and I personally think this is a bad thing because there is no way I can assume that 100% of what is on KCR is accurate as people’s experiences are different. The reason we decided to put the discussions on a forum was to keep the KCR site as factual as possible and not have it full of personal comments or political views i.e. just stick to the basics. The idea isn’t to stifle debate and comments just to keep them within the forum and not muddy the content on KCR. I could be persuaded to open up the discussion tabs and work in the same way as wikipedia if that’s what people would prefer.
2. Patients should be able to mark an article as being helpful or not. I think this is a fantastic idea and I will see if there is a way in which this can be implemented on KCR. There’s usually some add-in software knocking around that can be used. I’ll report back. I’ve always wanted feedback as that’s the only way we can make the site better and more relevant to the readers.
3. Clinicians should be able to do the same and mark articles as helpful or not. I suppose the only debate on this is if this needs to be separate from the patient ratings.

Dave has also made a reasonable point on the ACOR site whilst responding to my comments. He kindly said that KCR is heading in the right direction, however he has also quite rightly put the caveat that he doesn’t know the community around KCR, and yes this raises an important point.

• How reliable is the information?

So,we’re back to “Who Vets the Vetters?” and more to the point who are these vetters?

This is where I have to be self critical and make it clear that on KCR the information is an aggregation of data that has been drawn from peoples personal research or though direct patient experience. So, given this, the information should NOT be seen as clinical advice, but more as a means of reference giving the readers and patients a more rounded and detailed view of Kidney Cancer.

I had an interesting discussion over lunch last week where it was asserted that clinicians tend not to like sites like this. “It can confuse people and make it harder for the clinician if they have to field a mass of disinformation each time they see a patient”. I do sympathise with this view and I can see how annoying it may be, however it fills a gap.

What’s gap? Well one gap for me was that hideous time between visits to a specialist, and in the UK this gap can be long. I am private now, but was on the NHS up to the point of my nephrectomy and I remember how stressed I was waiting for scan results and tests, it was the worst time of my life. I filled that void of information by searching around the web trying to find answers for myself, some answers were good, others pointed me to non existent miracle cures. Basically there was no one place I could go that could give me information at a level I could understand and trust. The medical sites were too technical.

I don’t think the clinicians could fill this gap, it would be unreasonable to expect them to be available 24 * 7 at the end of a phone to deal with every ache or twinge that a patient feels and is paranoid about. It’s also the case that half the questions I’ve got for my specialist I either forget to ask, feel too stupid to ask or am too scared to ask at the time of the consultation, so I end up doing it on the web. Crazy I know, but I admit it!!

I also hope that it will ultimately help the forums and lists like ACOR and KCSN. I think they both give invaluable support, guidance and information and we’d be lost without them, and I hope that KCR can complement them by providing articles that the experts can point people at rather than having to repeat themselves when new users come on asking the same questions. I also hope it provides a good source of aggregated news articles that relate to Kidney Cancer.

I personally believe that as you get a critical mass of contributors on sites like these i.e. KCR and Medipedia that they start to self regulate naturally and the real value starts to emerge. I’m a great believer in social networking and I think these things are just an extension of that. Whilst I think there is a danger that there will be some disinformation, I also believe that if you have the ability to openly debate the information as well, then the community as a whole will be able to moderate and fix it. So for me, the community becomes the vetters, and within each community there are always people who are seen as “gurus” and I suspect that these are the folks that will float to the top of the contributors heap.

You’ll be glad to hear I’m going to bring this particular blog to a close now, as it’s too long, however there is so much more to talk about and it would be interesting to discuss how wikipedia moderates itself and how it is perceived as an information source …. maybe tomorrow.

Again, thanks to Dave deBronkart for bringing this topic up

As I cast my mind back to March 2007 after the nephrectomy I cant help remembering what was on my mind as I surfed round the internet; you know the thing, that mad sense that “there must be a miracle out there” that somebody is hiding under a rock.

As you look at how people find there way onto KCR for example you can see that they are pretty much doing the same thing. They put a search into google and then hop onto KCR, read whatever they want and then hop off again onto the next search result.

Now you’d think that with all the information stored on KCR that there would be no need to hop off elsewhere.  Yeah, yeah I know it’s probably a tad arrogant to assume that we’ve locked down all the info available but to be honest it is safe to assume that we’ve nailed enough information to make the site “sticky”….. I’m glad to say that the regular readership is growing, however capturing the site hopers would be fantastic.

So why do they hop off?

When the decision to create KCR came in 2007 it dawned on me that the site hoping is something that people just do in desperation to find the “miracle”.  I did it, I surfed and surfed ignoring all the sites that said “there is no miracle” until I found sites that said “here it is, buy ya snake oil here!”  Instinctively I didn’t want to believe the harsher facts, I wanted to believe that there was some more comforting solution.

And there’s the danger. Yes, I’m sure it is safe to say that there are people out there who’ve had “miracle” results by standing on their head’s  sucking Goji Berry wine through a shark’s cartilage straw that’s been soaked in esiac tea strained through apricot kernels. However the reality is that many of these have no medical backing or efficacy and are massive hearsay outlier examples, it’s just a cruel way of extracting money from people when fear gets the better of them.

I’d love to work towards putting a stop to these snake oil salespeople.  The challenge on KCR is to bring all these supposed cures onto the website so they are listed and well understood, giving people a genuine reference.  Having said that, giving these cures any space on any site can often just advertise them even more …. And this is where we need a balance.

One of the reasons I’ve asked for Feedback for KCR on the new Kidney Cancer Support Network forum is to see how other folks believe we should deal with this kind of data, how’s it best displayed? How do we keep it up to date?  Yes, I’ve been given the FDA’s list of known fake cures, but there’s more out there and we need better explanations.

It’s been quite a while since I wrote my last blog, but to be frank there hasn’t been that much to shout  about, and with this wretched credit crunch my mind has been somewhat focused elsewhere.

So whilst we’re all sitting here at work waiting to see if we have jobs at the end of the week or not
I thought I’d put my fingers to the keyboard and see what comes out.

Out of this financial gloom something exciting has happened in the last week.  As of now there is a fully
blown Kidney Cancer Support Network web-site which includes a large map of the UK showing us where people are, plus there’s a new forum to bring people together and where we can share our experiences and views.

Since the James Whale Fund closed their forum down there hasn’t really been anywhere to go that’s genuinely active and patient lead, but I was so heartened to see that they’ve put so much effort into making Rose’s dream a reality.

What we have now are groups working cooperatively, with the James Whale Fund, the Kidney Cancer Support Network and the Kidney Cancer Resource all helping each other and all focusing on different core areas.  Those core areas being Funding and Awareness, Patient Support, and finally, Information provision.

I do believe that since the N.I.C.E. demonstration back in the Autumn of last year there has been a change, it showed that people coming together like that can make a difference.  Thanks has to go to Clive and Jan Stone for making this happen.

Clearly I’ll be putting up a more formal announcement on KCR to celebrate the opening of the Kidney Cancer Support Network.

I’m looking forward to the coming months and seeing this all come together.

I’ve managed to record the salient bit of the program today for those of you who missed it, clearly you can still get it on BBC iPlayer over the next week however I thought I’d take a recording anyway.

Radio 4 Any Questions

Sorry for some of the background noise, but the quality should be good

The action we all took by demonstrating at NICE has clearly hit the sweet spot and at last it’s in the public domain. Do I agree with what the panelists were talking about? … Difficult to say really. I like the idea of co-payment, I like the idea that people (like myself) who can afford to pay for a visit to the GP should pay for example. I can however see the other side of the argument that Tony Ben was alluding to i.e. that this could be the thin end of the wedge and suddenly we’d be sliding down the slippery slope of means testing… where should we draw the lines?

For me it should be judged on a case by case basis, we’re not talking here of a bit of flu or an infection that requires a few antibiotics. I think that this is where the problem lies, all these conversations are trying to generalise it. How can you? It would make more sense to yes, make people pay for prescriptions and GP visits, it’s pretty easy to asses, we seem very able to do that for things such as income support …. wouldn’t that be the best and simplest dividing line? Why make it complicated?

Anyway, I’ve got no wish to upset anyone with my views as they’re not based on anything other than my thought process’ after listening to the debate today. I do however think, as I said in my last blog, that these are hard arguments to come back on… but I’m sure we can do it.

The debate has moved on, and yet again we see NICE using a new line of defence. They’ve clearly lost the clinical efficacy debate and that has been born out by ITV’s breakfast programme this morning and the numerous articles in the press this week (<a href=”http://www.kidneycancerresource.com/index.php/Main_Page” target=”_blank”>check out the rolling news in KCR</a>). So, now the argument is that the NHS simply does not have the money to pay for the new drugs as they come on-line. I think the figures they are quoting say it will cost about half the annual NHS budget to keep cancer patients alive, anyway something like that.

This is a tough one and I hope we can come up with a response. The hardest thing I’ve found when discussing this subject with anyone outside of the Kidney Cancer domain is that they have a view that was much the same as mine was prior to getting the disease. That view was that “there must be a finite amount of cash available and to that extent tough decisions have to be made”. What I’ve also found is that if you try to broaden the debate and suggest ways of saving money elsewhere then you’re accused of over simplifying it or “getting off message”, it’s a catch 22.

We all know that there is a £1.75bln surplus in the NHS, we know that agencies such as NICE spend £4.5ml a year on the media etc, and yet obvious saving like this are seen as a distraction and nothing to do with the topic in hand. One of the examples I have from an IT perspective is this….. as part of setting up KCR we went through every PCT and hospital in the country and listed them in the index, address’ and website address’. I can’t remember exactly how many there were but it soon struck me as I was doing it that each of them had their own individual web presence. Apart from the sheer frustration of having to manually enter individual Web-Site address’ it just struck me that what an incredible waste of money this was, each PCT paying for it’s own individual web development. Who let them do this? Who made the decision to allow them to decentralise this? Total madness. Madness not just because of the costs, but it’s made it more and more complicated to get information. One site with a list of all the PCTs with corresponding information, that’s all that was needed.

It’s these kind of chaotic decisions that’s making it tough for the NHS to afford real treatments. Only about a year ago a program on BBC2 exposed just how much has been wasted on a centralised patient record system that nobody at the grass roots of the NHS felt was necessary. Nobody even asked the users (i.e. people within the NHS) what problem they were trying to solve, they just made assumptions and went off and spent billions over many years on a system that nobody wants and has yet to even go on line from what I understand (could be wrong on that).

It’s bureaucracy gone mad as usual. Each of these items taken on face value would not pay for the Cancer drugs, however it would not be beyond the bounds of possibility to think that collectively they could.

The problem is we’re not allowed to talk about these things and we’re told we don’t understand the mechanics and we’re are making broad assertions …. “leave it to the experts”.

The sad thing for me is that my observation says it has less to do with politics and more to do with the complete overload of institutes, organisations and committees etc, all playing and making decisions in similar spaces in the NHS creating blurred lines of responsibilities between each of them. These blurred lines now mean that nobody has real ownership of the problem because they can all point to each other and say “nothing to do with me …. it’s them”. I don’t know, maybe that’s the political aspect, maybe they were set up deliberately to confuse.

However I’m not that cynical, I have faith in human nature; I just think they were setup with all the best intentions, and when one aspect hasn’t worked, rather than try and fix the problem at the root they just setup another layer. So this is why we’re stuck with such a huge management layer within the NHS.

I don’t know how we tackle these issues, they’re big and far from focussed. Anyone got any ideas?

The demonstration at the NICE HQ was a fantastic success, nobody can deny that. The back-pedalling from NICE since then bears testament to that and a great debt of thanks goes to those who made it happen.

To make the announcement about the eye drug on the same day as the demonstration shows just how low these people are prepared to go, they knew we were coming, we made no secret of it. They were even sniffing around the KCR website the day before to gather information on it. (In case you’re wondering how I know that www.sitemeter.com lets me see what IP Address’ are visiting the site and what pages they are viewing, I clearly can’t see individaul names but I can see network providers and larger organisations, and on that day it said N.I.C.E. … they came on 3 times).

The Eye drug announcement was just another one of those heartless and insensitive actions we’ve come to expect from a bunch of people who announce they have a £1.75 billion surplus in the NHS and yet refuse to let patients have the drugs they need, be they cancer victims or otherwise. Maybe they get paid bonus’ based on how much they can come in under budget?……..no, that’s just too cynical …… isn’t it? Also if they’ve had plans to readjust the QALY calculations then why did they wait to make that announcement? and why do they still not publish the algorithm for everyone to see? Theyr’e not the only people to understand comlpex statistics.

It’s all gone very quite, and I reckon they’re very thankfull for it.

I suspect we still need to tread carefully and ensure that we keep the pressure on. NICE have made “strange” decisions before and there’s nothing to say that they wont still turn around and say no to the drugs. We need to be on our guard. I’d like to see them make statements around any new drugs that come on the market that have the blessing of the experts (i.e. the consultants), I want to see statements that mean this will never happen again, and that never again will cancer patients be put under such extreme stress.

I believe that the real test of their intentions will be shown with the results of the next few PCT appeals. If they all go through on the nod then great, but I would hazard a guess that wont be the case. If I was a betting man I would expect them to now think that they’ve lulled us into a false sense of security only to deal a bitter blow next year.

Let’s keep the pressure on and keep on writing to them and the media and let them know that we’ve not forgotten. We all know that if we’d all sat back and done nothing we wouldn’t be in a position now where they’re back-peddaling like this.

I’m going to try and insist on a direct reply from my local MP. I cc’d her (Claire Ward) on my letter to Andrew Dillon. Her original response to another letter I wrote was weak. Although Dillon replied I’ve heard nothing from her. I also wasn’t happy with his reply to me so I’ll also be asking for clearer responses to some of the questions I gave. I’ll publish these as and when I get round to it.

Dear Mr Thomas,

Thank you for your email. I understand the strength of feeling, amongst those who have renal cancer and those who care for them about the draft guidance we have issued for consultation. Many people are expressing similar views, individually and through patient support groups.

You refer to some things you say I have mentioned in relation to renal cancer drugs:

1. QALYs: The reason we use this measure as the basis for our judgements on cost effectiveness, applied across the board, is that it enables us to act fairly in recommending the use of all the new treatments we are asked to appraise. The QALY value itself is not, though, the deciding factor. Our independent advisory committees have discretion to recommend the use of a treatment with a high cost per QALY where they consider that other factors, including the absence of any other effective treatments, are relevant. Treatments of more than £40,000 per QALY have been approved using this discretion in the past. However, the cost per QALY of these renal cancer drugs ranges from around £71,000 upwards of a £100,000 and the advisory committee took the view that the factors which they felt it appropriate to take into account in making their preliminary recommendations, did not justify extending their discretion that far.

2. ‘Pharmaceutical companies are to blame’: I have not said that the drug manufacturers are to blame. I have, however, pointed out that these drugs are extremely expensive and just as NICE is, quite rightly, asked to justify the its recommendations, so the drug manufacturers should be able to demonstrate that the price they are charging is reasonable. I accept that companies need to make a profit and I agree that drug pricing in general is a matter for the companies and the Government. However, it is important that when a decision of this kind becomes a matter of public debate, all the factors, including the price of the drug, should be considered. Any discount scheme a company offers needs to be discussed first with the Department of Health. The companies know this. I am not aware that they have done so. If the Department of Health asks us to, we will formally consider the cost effectiveness of their proposal. However, given that it was aware of two proposals, the Appraisal Committee gave some preliminary consideration to them. These schemes did not have sufficient effect to cause it to change its recommendations.

3. Who else would have to suffer if these drugs were funded? Which critically ill patients should be condemned instead of Advanced Kidney Cancer patients?: Our job is to advise the NHS on the best use of the resources it has available. And when we advise the service to spend on one group, those funds are not available spend an any other. I can’t comment on your other points.

4. The PCTs are adding to the confusion by not having a collective response to Exceptional Treatment policies and hence are fuelling the Post Code lottery: The point I made, on the recent Panorama programme, was simply that people who use the NHS for their care can reasonably expect good quality local decision-making where such decisions need to be made, and that a common set of criteria would help.

5. Patients are using the media in an unfair way to put pressure on NICE: I haven’t said this. In general, through, it is the case that engagement with NICE is most effective when it’s done through our normal consultation processes.

Yours sincerely,

Andrew Dillon
Chief Executive
National Institute for Health and Clinical Excellence
71 High Holborn | London WC1V 6NA | United Kingdom

Andrew Dillon
Chief Executive
National Institute for health and Clinical Excellence
MidCity Place
71 High Holborn
London
WC1V 6NA

Dear Mr Dillon,

RE:Bevacizumab, sorafenib, sunitinib and temsirolimus for renal cell carcinoma

As a Kidney Cancer patient I write to you in reference to your draft report on 7th August that outlines your recommendation to not approve the drugs for Advanced Kidney Cancer i.e. Sutent, Nexavar, Avastin and Torisel.

Over the past weeks I have heard a number of arguments that you’ve used to back your recommendation.

1. QALY, i.e. that these drugs do not extend a person’s life for long enough given the cost of the drugs

My response:

• These drugs are used successfully across Europe and the US and have been proven to offer significant improvements to quality of life as well as extending the life of a terminally ill kidney cancer patient for up to 26 months (latest clinical trails data) or longer as witnessed by many Kidney Cancer patients around the world.
• It seems to me to be a carpet bomb approach to say no to all 4 on this basis, this says to me that the decision was purely cost based and not on efficacy and clinical trial evidence, it was just NICE saying no to Kidney Cancer Patients no matter what the drug.
• Although I realise that the QALY calculation is complex, (although we don’t know as NICE wont release their methodology), I believe that your calculations have not taken into account the clinical trial evidence from other countries. I believe you now have this and will be using it.
• There are no other effective treatments for Advanced Kidney Cancer patients. As you know the current treatments have a very small percentage chance of working. You have also now heard from 25 UK experts in this matter backing this fact. To not give these drugs to patients is effectively condemning them to an early death.

2. The Pharmaceutical companies are to blame, their profits are too high and they charge too much for these drugs putting them out of reach for the NHS

My Response

• They do pump billions into research and as businesses are driven by their shareholders to make profits. Admittedly there maybe an argument to say their profits are too high and should be looked at. This however to me is a separate battle that the government/NICE should fight. It is not fair to use patients as negotiation tools to try and bring the costs down, if the treatments work they should be given as part of the NHS. NICE would earn more public respect and you will find much stronger public support for you battle with the pharmaceutical companies if you weren’t using patients in this way and I suspect you would win.
• The Pharmaceutical companies do offer schemes (e.g. Sutent) whereby they will pay for the first round of treatment. Why is this overlooked? It seems common sense to me to allow this because if the drug doesn’t work for that patient then the treatment is stopped.
• The figures you quote do not seem to take into account central procurement deals you would be able to negotiate, bringing the costs of drugs down.
• These drugs are offered at a lower cost to the UK than many other countries.
• Why do you ignore part funding/risk sharing schemes?

3. Who else would have to suffer if these drugs were funded? Which critically ill patients should be condemned instead of Advanced Kidney Cancer patients?

My Response

• This to me is an unfair argument. Yes, costs have to be factored into the equation, but with all the waste going on in the NHS and in the country as a whole this is just sheer bad management at the most senior levels. We seem as a country able spend billions bailing out our banking system (e.g. Northern Rock) and yet we can’t spare the cash to provide patients with much needed drugs. Not that I condemn the decision to bail out the banks because of the human impact, however it does seem odd that we’re able to do that and yet not provide for the NHS and patients who have no where else to turn.

4. The PCTs are adding to the confusion by not having a collective response to Exceptional Treatment policies and hence are fuelling the Post Code lottery.

My Response

• Patients are meant to be judged on their individual and specific exceptional needs. Wasn’t that their purpose to provide local accountability and community based support? If the PCTs and NICE are not communicating then what hope is there? It means 2 layers of management in-between the doctors and their patients. I’m so heartened to see that finally consultants and specialists are highlighting the clinical case for innovative cancer drugs and are fighting back.

5. Patients are using the media in an unfair way to put pressure on NICE.

My Response

• What did you expect? Central government does nothing, our local MPs do nothing, NICE denies the drug, the PCTs turn down the exceptional cases. What course of action are patients left with?
• Try and put yourself in the feet of a patient, of course you would do anything you can to get drugs that you know will help. If you personally were told by a specialist that there is a drug that can help but it wont be approved for you even though it has been proven to work in other countries. How would you feel? It is nothing short of cruelty.

Now that you can see the weight of public opinion I implore you to change your recommendation and approve these drugs now, not next year. Give patients and families their lives back. Please back the clinical case and restore the faith of the public in our NHS doing the ethical thing and giving these vulnerable patients the treatment they desperately need.

Yours sincerely

Andy Thomas

What a great day it was, I woke up expecting it to be a wash out, but by about 12 noon the skies had cleared and I set-off for Aylesbury for the annual Hobble on the Cobbles. I spent a bit of time listening to a few acts before meeting up with Francis and the band. One band in particular caught my eye and that was Loz Jones, cracking set. They were the opening act and set the tone for the rest of the day. The sound engineers had done a great job, possibly a bit too loud generally but very clear, and everything was well placed, and when I listen back to my recordings you can really pick out the bass and drums which makes all the difference as far as I’m concerned.

So after a chat over a drink it was soon Francis and the gang’s turn up on stage, they were the penultimate act. I was impressed, it was the first time I’d seen them live, I suppose I shouldn’t have been surprised given I auditioned for them, they were tight then. I guess it was also the first time that 99% of the audience had ever heard their music, and that’s what made it great, Francis can hold an audience and get them on-side; a true sign of any real artist. I was conscious of thinking that so was looking around for reactions, what I did notice was people generally moving to the music and a lot of foot tapping… always a good thing. I know Francis and the crew struggled with the monitoring on stage, but to the audience it was well balanced.

It’s a shame the album wont be out until Autumn time, however I suspect it’s going to be well worth the wait. You can tell that Steve Bush has helped mould the style by the subtle changes in the music. “Burn” is almost a different track to my ears. You can hear the new version of “Burn” if you goto his website. Check out the old version against this new one and hopefully you’ll hear what I mean. One day we may manage to convince Francis to put “Sad Man Blues” on an album, but then again maybe I’m just a “Sad Old Git” and that’s not the direction for the band.

Anyway I’m looking forward to their next appearance wherever that maybe, I think they’re a crowd pleaser with tracks that somehow stick with you.

As a slight aside Matt George (the drummer) is currently in the middle of walking from John o’Groats to Land’s End for Cancer Research but managed to play both the Paradiso in Amsterdam and Aylesbury … he just had to be plonked back at his last known position, he should be on his way from the Telford area now. For those wishing to donate click here to goto his justgiving site.

Folks,

I know this is a bit of a cheek, however nothing ventured nothing gained as they say.

As you’re probably aware in the UK we are struggling to get the 4 main RCC drugs (SUTENT, AVASTIN, TORISEL and NEXAVAR) made available on our supposed free National Health Service (NHS). The Government committee N.I.C.E (National Institute for Clinical Excellence) who decide on what drugs get passed into general use have decided that Kidney Cancer patients will be denied the right to these drugs and effectively be left out in the cold.

This is a disgrace and urgently needs to be stopped and over turned. As part of this cruel ruling they have also only given us 20 days (now 11) to respond to this before the right to reply is closed. Demonstrations and events are being organised by a number of groups in the UK over the next few weeks to help get the message across.

Now, here’s the cheeky bit. I realise this is a big ask, but any international direct responses we can get to N.I.C.E would be greatly appreciated, especially from those who have direct experience of these drugs or from those who have expert knowledge in any capacity..

You can see some of the recent news articles on the subject on our front-page:

http://www.kidneycancerresource.com/

You’ll also see on the right hand side of the page (just below the Red banner) a link that says:

“Click here to get your personal response on their Web-site by 29th Aug 2008”

If you click though it will take you through to the N.I.C.E site where you can put your comments. As with most government things they’ve made it as complex as possible to put us off, however at least it’s open to international responses.

I realise that this is a big ask and I fully respect your wishes if you would rather not do it, however any suggestions on general campaigning you may have would also be gratefully received.

Sincerely

Andy