Wednesday, 17 June 2009

The Price of Life

The title says it all really - once you have a terminal diagnosis and require treatment to extend your life it then has a price tag on it. And usually a pretty big one.

Tonight I watched Adam Wisharts documentary 'The Price of Life'. It focused on the appraisal process used by NICE to determine whether any new treatment should be funded by the NHS - particularly those for terminal cancer patients.

Being a patient with terminal kidney cancer and also someone taking an expensive life extending drug I have to say I thought the programme pretty well balanced and informative. But it did raise some questions, questions that a lot of terminal cancer patients have been asking for some time now.

In my previous entry I have commented on how offended I felt to have Prof Barnett describe me as 'blinkered' and compare the drug I need to stay alive to buying a car. Why do NICE seem to think it is acceptable to have a go at patients? When you are diagnosed with a terminal illness but know there is a very effective treatment available which can extend your life what is wrong for asking for it? And the very last thing you want to do is to have to fight for it at a time when you should be making every moment count.

And as for Ms Christie, CEO of Birmingham East and North PCT, I hardly know where to start. In the two and half years I have spent campaigning to get life extending drugs funded for mRcc patients I have never come across someone as callous and unfeeling. Her attempts at emotional blackmail, by intimating that a cancer patient on life extending drugs would be depriving the PCT of a palliative care nurse, were truly disgraceful. She then went on to ask if it was 'in a patients best interests to fill their bodies with very toxic drugs for the last 2 months of their life' - which clearly shows she has absolutely NO knowledge of what she was talking about. Which is outrageous.

Ms Christie - having worked in the NHS for many years and knowing the terrible waste of money that occurs on a daily basis I suggest you get your own house in order first. Then, and only then, do you have the right to criticise cancer patients. In fact no, forget that, YOU will never have the right to criticise anyone.

One very important question that was raised yet again is why can't NICE negotiate with the drug companies? Or why can't the government? No one seems to be able, or willing, to answer this.

The final question asked by Prof. Barnett was 'How much more valuable is a month of life - at the end of life?

I will tell you Prof. Barnett.

It is priceless.

10 comments:

Daria said...

Well said ...

Sybil said...

Pricelss is the exact word I would use Jane.
I had a meeting so actually missed the programme...and being a bit "daft" I havn't yet fathomed out how to record things on the DVD machine !! I will try to see if I can get it on the computer..
Much Love Sybil xx

tinkerbell said...

Jane you keep at it, having worked in the NHS I know only to well the thousands of £s that are wasted on administration alone, the moment parliment degrees a sum of cash to improve services surprise surprise a very well paid job is aproved to oversee said improvements, these people only see saving the budget but look in the wrong places. Untill the tiers of ministration are trimed back,and the money is used for the correct usage,and compasionate feet on the ground NICE admiistraters are in charge we will continue to see this disgusting disreguard for peoples lifes.Jane some people just are unable to make their feelings known you are a speaker for all these needy people, may God continue to use you and bless you

Emma said...

Jane, I missed the documentary - what side was it on please? Having the (mis)fortune to come under Birmingham North and East PCT, which consistently bleats about how wonderful it is, I'm now very relieved that my partner is receiving Sutent. However, we have been warned that there is no definite likelihood that this will work. We have a three year old daughter, who stands to lose her father before she goes to school. What price can you put on that?

Emma

Jane said...

Hi Emma,
The documentary was on BBC2 last night at 9pm and is still available to view here....

http://www.bbc.co.uk/programmes/b00l9dmw

Thank goodness NICE finally approved Sutent as there was no way Ms Christie would have allowed funding for your partner.

There is no guarantee that Sutent will work - but be positive. It DOES work in over 65% of cases - and works very well,

Thinking of you all,

Jane
xxxx

Deb said...

I applaud you Jane for your very meaningful post!
As you said, "Priceless" is definitely the answer. We can never measure the value of extending the life of our loved ones!!!
Debbie

Emma said...

Jane - thanks for that. I'll check it out when himself is not around (he's grumpy enough at present).

Unfortunately P's oncologist does not think Sutent is going to have any effect but is trying in case it does.

Emma

Jane said...

Emma,

Im a bit confused as to why P's oncologist doesnt think Sutent will work.
If you would like to email me privately my addy is....
ThompsonB31@aol.com

You dont live that far from me - Im south Birmingham - does P attend the Cancer Centre at the QE?

ADB said...

There is no monetary equivalent to life, Jane. And it's a doctor's responsibility to cure and (failing that) to ensure an optimum quality of life. At whatever price.

mortonlake said...

jane,i think the health servise has got a blinkered mentality when it comes to expensive drugs.really find it sad that terminally ill people are often just left to die,albeit perhaps pain free,or hopefully so.wonder if she would think the sane if she was dying?no.take care my friend,lots of love,mort xx