Friday, December 4, 2009

My NICE presentation

Back from the NICE conference, my organisation runs it and I designed most of the programme; I really only went for the beer and the dancing but sat in this morning on part of the session on drug evaluation. When I put this session together I included, as I do, someone from NICE, someone from the pharma industry, a PCT Chief Executive and a " commentator" I didn't think to include a patient's voice, we didn't have time. Five minutes into the presentations I realised I should have and that the patient should have been me.It was a very good debate and the case was made quite strongly for collectivism and for spending limited resources for the greater good. All sentiments I have concurred with for years but now I have a different perspective and if I had included myself on the programme this is what I would have said.

Good morning everyone - who's this you are probably thinking. Isn't that the woman who used to be at the Confed, used to be on the telly quite a lot; isn't that her that used to chair that mental health trust, she was on a PCT too wasn't she; isn't that the person who used to bang on about equalities, she trained us once on the Race Relations Act or was it the DDA; it's her organisation isn't it that helps to run this conference, she invited me to speak. Yes that's me all of those things but as of last year I am something else; I am one of those people you have all been talking about, the elephant in the room. I am a rarity, I am one of the people that fall off the edge of your collectivism Ian (Sir Ian Kennedy- the commentator, lawyer, ethicist, new checker out of MP's expenses). I very probably don't have enough QALYS to qualify for one of the drugs you are currently considering Andrew (Andrew Dillon, Chief Executive, NICE; the drug Yondelis). I am too much of a one off to be worth one of your members investing money to research how to save me Richard (Richard Barker, Chief Executive, ABPI) and I am one of the people, or very nearly I live in a different part of Birmingham, who puts terrible pressures on your budgets Sophia (Sophia Christie, Chief Executive, Birmingham East and North PCT)and who you argue should be sacrificed for the greater good; if you don't treat me you can treat 10 more people with common old breast cancer or 200 with CVD or try to stop 300 smoking.

And I am not here to embarrass you, to make you squirm in your seats; I have always nodded, understood all of these arguments; I chaired a PCT special cases committee for God's sake and manoeuvred colleagues through these decision making processes. I am a collectivist, a socialist, a believer in the NHS. But I want to just give you the benefit of my new perspectives; to add a few more thoughts to your debates.

Firstly the equalities argument - I am aware now of a new form of discrimination to go alongside the racism, ageism, sexism etc that I have been fighting all my adult life and that is rarism and it is I am afraid thoroughly institutionalised in the NHS. It's used as an excuse for fatally poor diagnosis; for scanty provision and for lack of investment. Can we as a civilised society really deny one person the opportunity of one more summer or Christmas; when we offer it to another. Is it any different to denying interpreting services to a non-English speaker, or a hearing loop or a signer to a deaf person because those too have opportunity costs? It is most definitely discrimination, rarities it seems are disabled people whose disability can safely be discounted for the greater good.

Now collectivism, a difficult one. When we unpick what we mean by this it reveals how messy it all is. Just a few thoughts to add to the mess; when we become tax and National Insurance payers we sign up for the NHS, we know that we may be lucky enough to earn more than others so pay more than others into a system that is set up to take care of us and those worse off than us; some of us pay in all of our lives and never take a penny out, others cost a fortune. We are not handed a list of exclusions with our first pay slip that says you are covered for this but not for that. We are not given the opportunity to opt for an excess or an extra payment to cover us for the very unlikely chance that we fall victim to a rare and expensive disease, we trust that we will be covered. When that cover is taken away from a group of people on the grounds of cost benefits then is starts to feel dangerously close to the US system where insurance companies refuse treatment because a person's entitlement has run out. And we all sneer at that don't we.

Another thought I have lung cancer, it happens to have come from a one-off leiomyosarcoma in a peripheral vein, yes check it out boy am I rare! rather than from a cancer stick I have stuck in my mouth. Even without bashing smokers who in the end probably can't help their addiction, aren't I at least entitled to as much money as them to keep me alive for however long. If we are a collective doesn't this seem fair.

Finally on collectivism, I fear it is fatally flawed and I cringe to say it. I fear that it is leading to dangerous reductionism. In order to give the greatest good we are spreading ourselves too thinly. I can only use the evidence of my own case study; I presented with a fat leg, fatter than the other. Classic symptom of a DVT that much I gleaned from the internet. After a couple of scans something was found in my vein high up, so quick swoosh I am on the DVT track, on the word of one SHO I am prescribed Warfarin and for 6 months I see no healthcare professional other than the phlebotomists who take my blood and give my INR readings. After six months a phone call tells me to stop taking the medication and that is it; no follow up no nothing. But hey my leg is getting worse so back I go to the GP who refers me on to a cardio - vascular consultant. I go two months later (waiting list targets met - tick) no further scan is taken but a Senior Reg tests my pulses and recommends compression stockings and continued Warfarin. Three months later it's actually the consultant I see and he remarks on my stocking, but doesn't feel my leg or order a new scan; I question this and a scan is ordered for 6 months time, an ultra sound doppler test not an MRI or CT scan. I go to France on holiday get bitten on fat leg by a mosquito in a rural backwater; it turns nasty I go to the local GP in tiny village who immediately sends me to a consultant who immediately orders tests yes CTs and an MRI and within a week finds it's not a DVT but said rare leiomyosarcoma. Rolls Royce service as opposed to Reliant or rather unreliant Robin. When I complain later the consultant says he was following protocols, I am extremely rare and he couldn't be expected to discover that. The system is set up to deal with the many not to discover the few.

Finally and I will make it quick because my lovely friend Yvonne has signalled I only have two more minutes I want to talk about evidence. It's the gospel, it's what we must have, it's what we must base our decisions on, of course it is. But when you are a one off where is the evidence? how do you know this or that will happen or this or that drug will only buy you this or that much time? The few who have my condition, don't have it where I have it, have tried this or that other medication. The evidence I have from survivors who email each other and now me, is that survivors have tried everything going and will try more if it comes along. For my particular condition I am the evidence, it dies with me so for the benefit of science if nothing else isn't it worth keeping me going for as long as possible

That's it, the lights on red, I leave these questions with you and very much hope to see you next year.

1 comment:

  1. EXCELLENT BLOG. I have often thought about this too. And though you are indeed a rarity, more and more LMS cases are being reported..I find them everyday on the internet, so putting money into treatment and research for everyone benefits not only them but the future people who must suffer with this disease. I am grateful for my daughter's remission, but know that at any time a met could pop up and we will be back to square one. SHe has insurance through the government (her husband is a soldier and she is a disabled Iraqi veteran!) But there are many treatments that are experimental and not approved and only those who have big money can afford to travel to them or get them. I will keep you in my thoughts as you fight your way through the system and through this disease. By using your voice maybe you can shout this out to the world. Patti