Friday 5 September 2014

Why I support Saatchi Bill and why maybe you should too....

saatchi bill, medical innovation bill

Professor Andy Hall from Newcastle University, Lord Maurice Saatchi and Debbie Binner   discussing the Medical Innovation Bill

Ah the arrogance of the well person (back to this in a minute).

I was there once too.  Blissfully sailing through life with three beautiful healthy daughters.  Great husband, great job, great life.

Apart from the usual childhood illnesses, never really gave our health a second thought.  None of our children, nor either of us, had spent a day in hospital ever - well almost never(  I  let the side down at 24 - fracturing my spine after falling from a horse. Major at the time: minor in hindsight)

Life changes fast.  Life changes in a moment.

This Sunday (7th September) at 7.40am Radio 4's Sunday Programme will debate the medical and legal ethics brought up by Lord Saatchi's Medical Innovation Bill.

The Bill is designed to help medical doctors innovate new treatments and cures safely and responsibly when a terminally ill person has exhausted all standard treatments.  The programme asks "will it help patients"

I say it will.

The Bill was launched after Lord Saatchi lost his wife, the novelist Josephine Hart, to ovarian cancer.

"Insanity: doing the same thing over and over again and expecting different results".
For me Einstein's quote captures the essence of the Bill. 

The Bill is for families like mine.  Families destroyed by the bitterest of grief, as we've lost our youngest child to a system that refused to flex when we didn't want it to do the same thing again and again.  The research showed that the treatment wouldn't work.  It didn't.  No lesson learned there then. But at least we were all "nice and safe" as we stuck to the protocol and had all the clinical evidence we needed. .... you get where I'm coming from

Ewing's Sarcoma, a terrible adolescent bone cancer, killed my child.  That's true.  Just like leukaemia killed almost every child it touched in the 1970s.  Only after that people refused to do the same thing and pushed the boundaries.  Now almost 95% of children and young people survive leukaemia.

Ewing's Sarcoma killed my child; but the system didn't try hard enough to save her.

If only Chloe had had leukaemia.  My expectations have shifted somewhat you see.

Back to Saatchi.  I was interviewed today by a Radio 4 journalist for the programme.  Not an easy interview.  He was tough on me, which is unusual.  Usually even hard bitten hacks step around a bereaved Mother.  But not this time,he pushed me hard and I admired him for his professionalism.  I felt like a person again.

Why did I support Saatchi?  How can parents/patients really play a role in deciding treatment as they only ever have crude internet-based knowledge? Why do we need the Bill when doctors are already free to innovate? Would the Bill have made any difference to Chloe? Isn't the Bill useless really because doctors have a "God-like" self belief and if they don't want to innovate they won't and will just ignore the Bill (not my words)? Isn't the Bill just a waste of everybody's time? Was Chloe's consultant scared of being sued? Would I have sued the NHS?

Oh and -  to be fair this was said with some respect - aren't people like me and Lord Saatchi attention seekers who are stuck on campaigns like this as a way of exorcising our grief.

As a former broadcast journalist, I recognise a good interview.  This was a good interview and these were all valid and important questions. An interview that pushed and challenged and forced me to examine my own motives.  It made me think and dig deep into my soul to check with myself that I was doing/am doing the right thing.

Grief is utterly exhausting.  Supporting a campaign like this is too.  Trying to engage with an industry with a firmly "closed door policy" to any non-medics who want to challenge the status quo.  I've even had hate mail.  Quite amusing hate mail actually, and rather well written, but sad, I guess, that somebody would want to personally attack me.   I really would rather not be involved in this for many many reasons.

Some of the doctors and other health professionals I met with Chloe, top my list as among the best most decent people I've ever met.  But I stand firm in my belief that the NHS, despite its rhetoric,  does not take patient/public involvement nearly seriously enough.

I support the Bill because it is the right thing to do.  I support the Bill because I've seen at first hand the terrible messy world of childhood and teen cancer and witnessed time and again a kind of entrenched status quo.   "We can't do that as the evidence doesn't support it," our doctor would chime.

  Oh yes, dear consultant, in a perfect world we would have all the right evidence at the right time and yes I'd agree with you.  But when is that going to happen? Like, Never! Seeing as you work in a field where survival rates have improved very little; if at all, don't you think it's time to try something else?   Time to look at creative solutions, working together with industry, regulators, God forbid patients and parents!  Let's look at risk.  How do we share risk.  How do we make sure we provide a structure where we can push forward together and do something else.  How can we get better outcomes?

Can parents, like me, ever truly engage with any value in the complexity of medical discussions?  Maybe; maybe not.  What many of us can do is understand risk and the odds involved.  After all cancer patients work with this all the time with current treatments.  What I wanted was some control over my daughter's life.  I didn't want me or her to be dismissed and left on a conveyor belt which was speeding rapidly down the wrong path.  To the system she was another sick child; to me she was  everything.  Simply everything.

What would you do?  How would you feel?

My daughter was given a 25% chance of survival on current treatments when she was diagnosed.  We saw that as hope, so we were happy to try the treatment.  When first line treatment failed, the odds dwindled to 7% at best.  That wasn't good enough and we wanted to try something new; something else.

We couldn't get it.  There are treatments out there and combinations of treatments that had some clinical evidence to show that they could have made a difference.  But we couldn't reach them. I think that was wrong.

Was our consultant scared of being sued by us?  In truth I've no idea.  Do I think this Bill would have changed that - again I've no idea.  But I feel I would have been considerably more empowered as a patient representative if there was a clear structure to work from and I think that would have helped. I also felt that our doctors barriers were sky high from the beginning.

Would he have refused to work with me.  Again I've no idea. I'd like to think not and I'd like to think that he is/was a good man doing his absolute best.   But again I would have had a structure to take to him and maybe that would have helped all of us.

  For those lucky souls with no need of serious treatments for cancer or other illnesses, this may all sound like a pretty depressing subject.  Best avoided.  But we avoid this subject at our peril.  If you or one of your loved ones gets a rare cancer - or rare illness - or even the wrong kind of common cancer -you will have a big problem. If the pharma industry doesn't see you as a lucrative option, you are going to have to rely on your doctor being firmly on your side and maybe one day working with you to access one of those "imperfect"  untested treatments. It might be all that your left with.

I've met Lord Saatchi on many occasions.  He writes the odd letter to me too.  They are beautifully hand written, thoughtful, considered and kind.  I doubt we share many political views; but we are linked by having lost the love of our lives and battled a system that we felt could have been a hell of a lot better.  Friends/fellow bereaved parents are sometimes quizzical/suspicious as to why a "multi-millionaire" is bothering himself with all of this.  Maybe he, like me, is working through his grief.  Or maybe, like me, he feels a duty to do his bit to right something that he feels is so wrong.

Personally I find him a remarkable man.  The way he has poured his time, energy and passion into this piece of legislation.  I believe he's kept going despite his grief; not because of it.  And I thank him for that.

Please help to keep this debate going; whether you are for or against.  It's an important one.