Hello Again My Old Friend … (Part One)

Wow. It’s been so long since I last wrote anything on here, that I had to go back to the site to reacquaint myself with it. So hello again, I’m back to bother you once more.

For anybody who only follows Adam’s Appeal here, what the hell are you doing? There is so much more to see! Err, I mean rest assured I’ve not fallen into another malaise, nor lost my blogging mojo (say what?). I was just busy doing other stuff, primarily preparing for Christmas and our final round of antibody treatment in Germany taking our fight to have Adam’s antibody treatment in Germany funded by the NHS into the public domain in an attempt to try and break the impasse that we’d reached. What I should, of course, have been doing was preparing for Christmas and our final round of antibody treatment in Germany.

We’ve been fighting to have Adam’s treatment paid for by the NHS since March of this year. Yes, that’s right, March. Before it was even decided that we would be going to Germany, and not America. Months before we eventually began antibodies on August 1st. Knowing that Surrey PCT had already refused to fund another little boy’s treatment I had no doubts that they’d adopt the same stance with Adam. So my preparatory work started back in March when I wrote to the Department of Health on the general issue of funding of immunotherapy in Germany for those children who failed to meet the eligibility criteria for the UK trial. The original agreement in Parliament last year was for treatment in Germany to be funded during an interim period prior to a second, all inclusive trial, being established here. I actually received a response that appeared on the face of it to be potentially very helpful. Indeed Mr Peter Bone MP who had done a lot of his own work on this issue, and Dr Penelope Brock the lead investigator for the UK trial from Great Ormond Street Hospital, thought it was the clarification that everyone had been seeking. Unfortunately it wasn’t to be that simple, how utterly silly of any us to think for one moment that it might be, and as time passed it was clear nothing had materially changed.

In June Adam’s consultant made an application to Surrey PCT on his behalf for funding of immunotherapy treatment in Germany. It was turned down flat, without it now seems even being the subject of a discussion at a panel or meeting of any kind. Rather it was ‘triaged’, and confined to the waste bin, on the grounds that Surrey PCT do not, under any circumstances, fund experimental treatment abroad. Unequivocal, end-of-story, don’t come back because this judgement is full and final and is not open to discussion. Well they didn’t actually say that, not explicitly, I just read it between the lines. There was no doubt in my mind that it was the message they wanted to convey.

Wrong.

Of course being the annoying little individual that I am I was never going to slope away with my proverbial tail between my legs and let that be the end of the matter. We also had the considerable benefit of having the NB Alliance and Adam’s Appeal fund to fall back on which duly paid for Adam’s ticket on to the German immunotherapy ride.

At the end of June, actually before the Surrey PCT had rejected Adam’s funding request, but being presumptuous of the fact that they would, I met Chris Grayling our local MP for Epsom and Ewell. I had copied him on correspondence with, and from, the Department of Health in March so he already had some background. Two MPs had already intervened on behalf of their own constituents – Mr Peter Bone and Mr Neil Parish. Both had brought backbench debates to the House of Commons and (oddly enough) the respective PCTs had subsequently found it in their hearts to fund treatment in Germany. However, this was not possible in Adam’s case, for Chris Grayling is not a backbench MP, he is a member of the government. And under our current parliamentary system a member of the government cannot ask a question of the government – even if concerns an entirely different department.

So began a six month period of toing and froing between Department of Health and NHS Surrey. The former of which offered the repeated advice than it’s at the discretion of the latter to fund individual treatments under exceptional circumstances blah blah blah, matters of relapse,clinical benefit, and expert guidance, blah blah blah. And the latter of which offered the repeated advice that it recognised the former had issued guidance that all children should have treatment in Germany funded until such time as the second UK trial opened, but that it was not indicated where the funds to do so were being provided from.

Neither wanted to address the matter directly between themselves, but instead to keep issuing responses of the same vain, albeit more brief each time, so that eventually we’d get worn down, give up, and go away.

Wrong again.

Whilst we’ve been out in Germany the subject of funding has come up with several other families from the UK. They have all had funding from their respective PCTs, though not necessarily without battles of their own, and interventions of both senior clinicians and local politicians.

That’s the thing. My battle is generally perceived in the media campaign to be with NHS Surrey, obviously so as they are the route to get Adam’s funding under the current system. However, in truth, my bigger, hell my enormous gripe is with the ‘system’ itself, and more specifically the Department of Health.

The main UK antibody trial excludes kids like Adam on the grounds that they are not good candidates for a clinical experiment as they do not form part of a homogeneous subset. Fair enough (yes fair enough, cancer treatment in kids is one experiment after another, if you don’t reach an acceptance of that you might as well go and do yourself harm rather than let it eat you up that your child is part of it). However, zero thought was given to those who fell outside this strict eligibility criteria. Despite overwhelming pre-clinical and clinical evidence about the efficacy of monoclonal antibody therapy in neuroblastoma treatment no consideration was given as far as I can see. None. I’ve read of one child who didn’t get on the trial because they reached high-dose chemotherapy stage of the protocol six days later than the cut-off point. SIX DAYS. I mean, Adam missed it by six months and it still makes me fume that he is therefore consigned to the ‘sorry, you missed the bus and there isn’t another one coming through this country for you’ pile. I can’t imagine how it must feel to know that somebody somewhere has decided that just a few days is the difference between your child possibly having a better chance of life over death.

This lack of consideration was obviously identified pretty quickly, when the first child came along that couldn’t get on to the UK antibody trial. So it was all discussed in parliament in March 2010, Peter Bone the local MP of the child in question did a lot of work, as did Ann Keen on behalf of the then Labour government. And it was all agreed. The children who took longer to respond to upfront therapy and missed the cut-off, estimated to be around 5 or 6 per year, would be catered for as follows. A second trial would be established in the UK that would be all-inclusive, allowing those children ineligible for the original trial to get antibody therapy. In the meantime, such children would be able to travel to Greifswald in Germany for such treatment if their clinicians so advised, funded by the NHS. Not perfect, travelling to another country for treatment can never be so, but all things considered a satisfactory outcome. Get the new trial up and running as fast as possible, and in the meantime the NHS subsides the equivalent treatment abroad until such time as it can be offered directly in the UK. Simple, no?

NO. Not simple. Talk has never been cheaper. Nothing has materially changed from that day to this.

There is no second UK clinical trial open yet. It was going to be early 2011, then summer, autumn, by the end of the year. Now slated for sometime in early 2012.

There was no process put in place to fund antibody therapy abroad as an interim measure. No fast-track procedure to help families of children with neuroblastoma, and by god they need all the help they can get. No pot of money set aside to pay for this potentially life-saving treatment. Despite all the effort put in by a few individuals back in early 2010, and despite all the platitudes I’ve seen spoken, and written, since in support of children with cancer nothing has materially changed. Fifteen months on from that first case it is still no easier for me to get funding for Adam. In fact clearly the opposite is true, for as of today he’s still not being funded.

I do not want to see another letter, or another statement, from anybody expressing their sorrow or sympathy at Adam’s plight when it’s plain to me that actually they don’t really care. And I don’t mean they don’t care about Adam specifically, I mean they don’t care about children with this vile disease, and trying to ensure that each and every one of them have the best possible chance of beating it. Otherwise I would not be having to fight tooth-and-nail for what Adam has been rightfully entitled to since March 2010. Otherwise those in positions of influence would have been busting their collective arses to ensure the second UK trial was up and running long before now.

Just in case you were wondering, the whole thing makes my blood boil.

Anyway, I’ll get back to the actual story now before my head explodes. Having almost reached the end of treatment, and seeing no way forward, and having done the correct and proper thing by taking the matter up with my local MP it was time to bring everything out into the open. I’ve tried to be as honest, and upfront, as possible. I told Chris Grayling that I was going to the media, and why, before I even discussed issuing a press release with the charity.

And so last week we launched our media campaign. Most of it was done in the open, on Adam’s Twitter, Facebook and Tumblr sites. We gained some great coverage in the local press, most notably on BBC Radio Surrey and a front page report in the Epsom Guardian, and the story also gained a much wider audience when it was taken up by the Daily Mail Online.

I thought the stance taken by NHS Surrey in response was rather peculiar. They put out statements to the effect that the decision had been based upon the clinical evidence, assessment of benefits, and individual circumstances; when clearly as far as all available records showed it had been down to nothing of the sort. It was immediately dismissed without full consideration because it was a clinical trial abroad, and to date I have seen nothing to indicate it was subsequently later reviewed on any other basis.

Late Thursday afternoon in reply to an earlier request I had sent them, I received an email from NHS Surrey informing me that

“For patients that fall outside the entry criteria of the current UK trial a second trial is being set up with less stringent entry criteria and was expected to have opened in Autumn 2011 but and we have been in contact with GOSH to see if Adam could be transferred to this trial when it starts, however we have been informed  that this has been delayed, in view of this and in light of new evidence received relating to what has happened regarding other similar funding requests received by other PCTs NHS Surrey will  be relooking at Adam’s funding request. It will be considered by the Individual Funding Request Panel on 4^th January.”

So there you have it. Nine months after starting out I still have no guarantee that Adam’s treatment will be funded. However, after originally getting turned down flat, spending six months not getting very much further forward, and gaining one week of press coverage we’ve now got a full panel meeting that will be considering Adam’s funding request early in the new year.

Some might ask why it had to come to this, I would be among them.

Others might ask why I am making such a big deal about it when clearly we had the funds to pay for the treatment, Adam received it in a timely way, and he’s now almost completed it. To those people I would say there are three reasons.

The first is simple, Adam is my son and like any normal parent I am given over to protecting and caring for him. But  this is one of the things that cancer tries it’s hardest to take away from you, instead you find yourself standing idly by watching helplessly as your child suffers repeatedly, from illness and treatment alike. I cannot therefore also stand idly by and watch Adam’s request being turned down, while others elsewhere are not. I cannot allow him to be treated any differently, to be seen as any less deserving, simply because of where he lives. Call it pride, call it stubbornness, call it whatever you like. I have to wake up to the reality of our situation every morning, and I can tell you that fighting for Adam in this somewhat small way makes it easier for me to do so. I might even go so far as to suggest it’s even helpful to have a fight that I can take on, maybe even win, on Adam’s behalf.  You see I can’t fight the real fight for him, can I?

The second reason is that £65,000 is a large sum of money. It’s a lot of sponsored walks, and cake sales, and collection tins. Charity should not exist to subsidise public services that are by definition free for all, and that is quite clearly what’s going on here. We know Adam is not going to have clear scans after we finish treatment in Germany, and we’re not ready to stop yet, cross our fingers, and hope he’ll be alright. We also know that we have no further treatment options available in the UK. So whatever we do will come out of America, and it will have to be paid for. How much? I have no idea at this precise moment in time. But if we have to physically go to America, and even live in America, which I am hoping will not be the case, it will not be cheap that’s for sure. And that’s not even considering what might happen, and what sort of funds we might need access to, should Adam show progression or relapse.

The final reason is my desire to highlight the inconsistencies, unfairness, and endless struggles that parents of children with neuroblastoma face, and maybe, just maybe contribute something to make it easier for other families in the future. It’s enough to have a child with this disease, to watch them go through so much. But to then be faced with all this other stuff besides. I wouldn’t believe it were it not for the fact I know it’s true, know because I have lived it and seen others live it too. I wasn’t hoping it would end up in the media, it would have been just fine with me if somebody at the Department of Health had actually sat down and done something positive to resolve the issue when I first wrote to them in March 2011 to say things weren’t working how they should have been, given what was agreed in Parliament a year before. However, I always expected I would end up having to take things public, and I suppose that in itself is a sad reflection of the way our system works … or more correctly doesn’t work.

One final thing, just so you know. I started this post without any intention of going over this whole sorry story again! It just sort of … happened …