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It is all about communication these days isn’t it? [Sep. 15th, 2009|08:52 am]
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When I last wrote (quite a while ago, admittedly, so there is an irony in the headline) it was about the speed of the appeal process to get my father treatment for his cancer, becoming oh so slow. Tthe appeal review to get NICE to review his treatment was to be in 6 months time. So naturally we appealed against the appeal date. Even the doctors at the specialist unit in Birmingham were appealing against this date of February 2010.
So we sent more letters to the MP; who was again very supportive and helpful, my sister gets dad’s case into the local newspaper.
We hear nothing, my father has an appointment to explore the interim solutions (not many) that are available, my mother, sister and father all go to the hospital, so far so good. 
But then things take a turn. This is not a discussion about the interim solutions. The appeal has been held and not only held but the decision overturned and my father has been approved to receive the recommended treatment. Whooping and hollering all around and great delight - cut to father and mother in tears. So what happened, how did this all work out?
In the first instance it was Patient RC was who was being considered for this treatment and who was referred to in the original decision made to deny this treatment. I do not know why his representation at this point was anonymous; apparently it is quite common to do this.

But between that decision and the appeal he was transformed from Patient RC to a real person, a living, breathing person with friends and family and people fighting to support him. All of that helped I have no doubt, but I think the single biggest factor in all of this was he moved from being initials to being real.

To paraphrase ‘The Prisoner’ I am not just initials I am a free man. 
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Moving speedily to delay cancer treatment by 6 months [Aug. 13th, 2009|04:33 pm]
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I have heard so much in recent weeks about the speed, and focus etc that the NHS puts into delivering solutions for patients with life threatening disease such as cancer.  I would say that has broadly been the experience so far,  even when it’s not what you want to hear: “No your father cannot have the drugs prescribed for him by his cancer specialist” because NICE haven’t said they are nicewe knew it swiftly and so can start to appeal and challenge and search for other solutions etc.
You get swept along on this ride and expect it all to happen at speed… not an unreasonable view eh?
So I think I mentioned the appeal date was yesterday, we didn’t hear anything. Communications goes to the Doctor first, themto us apparently. So we heard today.
The appeals procedure is snowed under… the appeal will not be heard until February 2010.

No that is not a typo February 2010.

This man who has this apparently rare form of this cancer we heard yesterday, will have to wait six months to know if he will get the drugs he has been prescribed and they could still say no. It is incredible isn’t it?
So here we go again, apparently we now have to lodge a formal complaint to the PCT. Our MP Parmjit Dhanda and his team in Gloucester have been very helpful, so thanks to you all.
In parallel of course, we are still pushing the PCT to bring this date very far forward, they will see if they can fit us following a cancellation. Who cancels that kind of meeting? So we're not holding much hope that way.
So if anybody out there has a way of cracking this problem for a swifter solution I am wide open to ideas. We are already looking at clinical trials and stuff - so prising apart the bureaucratic tentacles that this is hidden behind are the ideas I am looking for. Thoughts and help welcome.
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Decision day for NICE over my father's cancer treatment [Aug. 12th, 2009|09:46 am]
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Synchronicity, what a word, the way it rolls around your mouth before gushing out past your lips. I never really thought too hard about it before today. 

My father’s appeal to the NHS trust to receive Sorafenib takes place today, fingers and everything else crossed. Thanks you to all who have been in touch and have contacted the Gloucester MP as well. 
NICE will meet today for the 3rd appraisal committee meeting on Sorafenib, which based on the schedule of meetings would seem to be the last one they will hold, though as mentioned previously the system is somewhat opaque. Even though the decision will presumably be made today, it will still take a staggering 6 weeks to actually make it public.
So it is now nearly two weeks since the treatment was denied, and there has been a treatment vacuum since then. So if there is no Sorafenib… What then? So far nobody wants to discuss it, not sure how to interpret that really. A task for tomorrow, maybe, once we know the outcome of today.  
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Fighting cancer and fighting NICE for an even break [Aug. 6th, 2009|01:08 pm]
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My father has always been a fan of boxing - but has never been into the ring, has never been in a fight like this one: against an opponent who you can’t always know for sure and who can surprise you. A fight where you can find yourself winning a round and feeling good, and then find yourself knocked onto the floor but with no alternative but to rally and return to the fight.
But my father has been in one of those scraps for the last three years and it is a fight that continues. In 2006, he was diagnosed with cirrhosis of the liver and he’s since heeded all the plentiful advice, no alcohol, no this, no that …  he’s recovering from it. 
Then late onset diabetes, with its daily ups and downs until you can manage, your body can read it: your intuition becomes more pronounced, you can see the punches coming. It is a remarkable thing that all sufferers come to manage this condition so adroitly not just my father.   
Then a hip replacement, recovering now, no walking sticks anymore, it’s just a question of being confident in yourself to manage and cope pull yourself together and show your opponent you are not scared.
Then fluid retention, that was a bit obvious, and we can deal with that, but in analysing that punch they spotted the potential haymaker. Yes, cancer.
The cancer is in the liver as a primary and the lymph gland as a secondary. Hence, an operation is not recommended. 
But there is a new drug Sorafenib (brand name Nexavar) made by Bayer that has been prescribed by the medical team treating him. It would do the exact task that is required. The cancer has been found quite early, he leads an active life, there are no nurses, no visits to home by doctors he could live an active and full life for years with this treatment.
But it is not approved by NICE.
They said no. They said they were sorry, but they said no. The sorry bit doesn’t help. Not really, not when it’s your father and he has done so much for so long. Selfishly we want him to stay with us, to spend time with his grandchildren, to spend time with us, to spend time with his wife, my mum. It is so easy to forget the suffering and the difficulties and the worries and concerns of the person who is well but oh so very close.
In all of this fight the NHS have been in my father’s corner, Time and again they have towelled him down between rounds, given him some smelling salts and sent him back into the next round and so far he is winning on points. But now a new situation, the medical team are still in his corner but the bureaucrats are supporting the opponent.
The decision-making process by PCTs on all of this is so opaque, soft words, hard decisions, all shrouded by process following. If it is so good then make the meeting public, let the patient appear and be questioned and let him/her question back. This is too important to be left to ‘nice’ people in business meeting rooms, making decisions far from the front row of the fight and those involved in the fight. 
I love sport, I love the thought of victory and triumph and my father was winning this fight, but now there is some new strategy being used designed to take victory away from him. So we need more fighters on the team, his team, my team and maybe, as I write this, your team as well; let’s do what is right for fighters, shout for them , support them cheer them on, let’s not pull the stool out from under them as they take a breather between rounds.

Let’s let NICE know that we want a fair fight.
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