Meeting with Anne Milton, Health Minister, October 24th

I recently attended a meeting with Anne Milton, Health Minister, on Monday October 24th at the Department of Health in London.  My MP, Mark Garnier, managed to get me on the list of attendees.  I was keen to attend to tell her personally how I felt about her announcement in January of this year which I believed failed the majority of the bleeding disorder community who had been affected by contaminated NHS blood products.

This was our introduction to Ms Milton and her associates:

Thank you very much for seeing us all today.  We would much prefer not to take up your time, but following your review and announcement regarding contaminated blood products in January 2011 we felt compelled to request this meeting, to urge you to re-visit the decisions made.  Specifically the one to retain the separation of the Hepatitis C infected community into two groups - stage 1 and 2 – when there is so much evidence that HCV is far more than liver disease.  People within the Stage 1 group are ill, but not through liver damage. 

When Andrew Lansley (MP) introduced the review findings he said that he hoped they would remove anomalies in the existing support system and that they could bring us some comfort, consolation and maybe even closure.  We believe that none of these objectives were met.  Your decision was that continuous financial support was only required by 20% of our infected community, leaving the majority still suffering, struggling and still fighting for help.  Maintaining defined stages of illness for Hepatitis C has increased not removed anomalies.  We do not think the levels of support offered are adequate but today we are requesting the immediate ending of the two tier system.

We believe that this is a fundamentally flawed decision and that an infected person deserves and should receive help because they were infected by NHS treatment, not if they meet highly specific, difficult to prove, levels of illness.  We do not believe the conditional and means tested Fund which is being offered is a step forward, rather it is an echo of the system criticised by this government and is vastly inadequate given the needs of those within the stage 1 group. 

Some of us belong to the various contaminated blood campaign groups.  I would like to stress that we are here today as individuals speaking only on behalf of ourselves but working for the benefit of all those who have been marginalised by your actions.  We hope to illustrate this by our own personal testimonies and the information included in our pack.

I will put the evidence we gave her on here, in post to follow...

 

Contaminated Blood House of Commons Debate - 14.10.10

Around 100 of us crowded into the public gallery in the House of Commons last Thursday to hear a historic back bench debate on contaminated blood products.  Haemophiliacs and von Willebrands, infected and affected, wives and husbands, families of those too sick to be there and widows and children of those who have died.

We had come to London with a sense of anticipation, a sense of hope that after over 20 years of campaigning and the loss of 1974 lives, we were finally being met by a government who stood for fairness.  A government who had indicated from the PM down that they wanted to help us to bring closure to the victims, of what has been described as the "worst treatment disaster in the history of the NHS" by Lord Robert Winston.

It started with a worrying turn of events.  The government tried to amend the original debate motion.  Not to change a couple of words within it, but to re-write it, bar the first three words "That this house...".  The government wanted to take out the acknowledgement of past failures and limited response so far to the tragedy, wanted to take out the proposal to implement Lord Archer's inquiry recommendations; even wanted to remove the apology to the survivors, their families and the bereaved.  In its place their amendment merely recognised the [inadequate] recompense that had been provided by previous administrations, estimated the cost of implementing the Archer recommendations as being £3 billion, pledged to review some of those recommendations and deeply regretted that many people were infected by contaminated blood products.

We were shocked and dismayed by this attempt to wreck our motion.  However the speaker ruled that as this was a back bench debate the original motion should not be amended by front benchers and that our debate would go on as it was.

Hooray we thought.  There followed three hours of passionate, personal and moving 5 minute statements from 24 MPs, all of whom had put in to speak at the debate.  The support and understanding we had from MPs of all parties was amazing. There was no arguing over the basic facts about what happened, no dispute that here we had a terrible medical scandal that resulted in a human catastrophe and great need. There was no argument about the fact that a proper financial settlement and hopefully an apology was required urgently. I say urgently because, as was pointed out by one MP people continue to die at the rate of one per week. We don't have time to hang around whilst politicians play games.

MPs paid tribute to members of our community who have died and to those who are still waiting and dying.  Whilst tears were shed in the gallery I was horrified to see two front bench MPs talking and laughing as Owen Smith spoke of Leigh Sugar, a haemophiliac from Wales who died from Hepatitis C earlier this year.  Where was the respect there?

It was debated as to why we had referred to the scheme in the Republic of Ireland, as this was felt to be too generous for the government to commit to.  It was said more than once during the debate that this was put into the motion because it was what the campaigners had wanted.  To an extent this is true, but that is because it was the bottom line for compensation that was cited by Lord Archer in his private inquiry report - a report largely ignored by government and one that the judicial review earlier this year compelled them to revisit.

What the victims of this tragedy want is a settlement that is fair and adequate - a settlement that treats this group with decency and respect and ensures that what remains of our ruined lives is spent at least financially secure.  Ireland's settlement which was implemented in 1996, and is still being honoured despite their financial difficulties, is one that is considered appropriate for the nature of the difficulties victims face.

As one of our campaigners recently said:

'You can't give us back our health, but you can give us back our dignity'.

The greatest despair though, came with the government's apparent inability to work out simple maths.  The question was how did the government arrive at the figure of £3 billion that was in their amendment, and that was their estimated cost of putting in place a similar compensation scheme.  The calculations were apparently accurate but were not able to be produced during the debate.  We are still waiting to see them.  We believe the costs to be far lower. 

We are well aware as a community that the timing on this is far from ideal however it is important to note that the reason we were infected by these devastating viruses was not least because the government diverted money away from developing self-sufficiency within the UK blood products production.  Money was not made available then, over thirty years ago and on many occasions since then when finances were there, administration after administration has ducked responsibility.  We haven't just turned up wanting a hand out.  For years successive governments have ignored the issue. It's not about party politics, it's about doing the right thing and it's about time that the victims of this disaster are given what they deserve - justice.

This was all acknowledged at the debate and the need to act now, in the name of justice and moral responsibility, was stressed time and again. 

However the vote was lost.  Why was this?  Because the government had produced a three line whip.  This compelled over 200 MPs who had not necessarily even attended the debate to come and vote against it when the bell rang.  It also meant that my own MP spoke passionately for us, but voted against us.

We appreciate that times are tight and that a cost in excess of £3 billion at this time of comprehensive spending reviews and cuts may be seen as irresponsible.  However what about getting your sums right before trying to write us off?

We are not a greedy, compensation grabbing bunch of individuals - we are genuinely sick, dying, unable to contribute to society the way we could and to look after our families the way we want, because we received contaminated blood products from the NHS.  All we want is to not have to fight for justice anymore and to have our losses recognised.  It wasn't right then, it isn't right now and we won't be going anywhere.

What we came away with is the promise to review the situation by Christmas.  The present government have the opportunity to put this right and they need to know that we will never give up.

Fairness, Mr Cameron?  Mr Clegg?  Let's see some at last.

Contaminated Blood Demonstration 30-06-2010

This week I attended the Contaminated Blood demonstration in London.  This is my account of the event:

Karen and I and wheely bags.

Train from Kiddy
pork pie and sandwiches.
Change at Smethick
Disappearing train
What the... where d'it go??
Next one appears
Will we make connection?
Two minutes to spare,
cross platform onto London train.
Phew.
Oh no.

Fatality on the line.

Diversion via Stafford
north to go south.

Educate woman on train
She wishes us luck.
Late arrival.

Tube across London

meet Cheryl
bus to Southfields

meal.

Exhaustion.

Up and out
Sun is bright and we are early.

Good journey in

Meet mum and dad at cafe.

Walk to Trafalgar Square

see ship in a bottle on a plinth.

Seemingly hundreds of people

reporters

cameras

busy organised activity.

Donning t-shirts

erecting banners

distributing placards

and we're off...

Snake way down street

get attention from some

Blatant ignore-ance from others.
Walk, limp, wheel.

Hand out leaflets

explaining our cause.

Meet new campaigners,

catch up with friends,
remember too many now gone.

Congregate outside Downing Street

leave room for people to pass.

Would you like a leaflet?

Mostly taken.

Some don't look us in the eye
and walk on -

silence is violence.

Policeman doesn't move us on,

he has haemophiliac son.

Small delegation to number 10

led by Lord Morris

hand in letters and a wreath

representing those we've lost to contaminated blood.

Photos taken

interviews given.

Back on the street
on to the Houses of Parliament.

Problems getting in.

No t-shirts

No banners

No placards

No leaflets
Not allowed.

Remove t-shirts,

put placards and banners in ring-fenced pen,

leaflets stuffed in bag.

Why-ever is this necessary?

Queue in heat
hot
thirsty
tired.

Through security,

very late for meeting

rush to room 4a.

Lord Morris still speaking,

heads popping in and out

"We have booked this room".
Need us out,
Still ours right now.

"Proportion of those infected
who've since died

greater than that of Black Death."
This is our Red Death. 
And still no justice.

Must leave room

mill around in corridor

try to ascertain plan for the rest of the day.

Arrange to meet MP in central lobby

make way there,

wait.

Lots of us
waiting.

MP comes.

Introduce mum, dad and Karen.

He offers tour,

is this time waster?

Seems not, so we accept.

Through into House of Lords
red, ornate, grandeur,

round to terrace on Thames

back into House of Commons

masses of records
floor to ceiling

past library

round back of speakers chair

gargantuan statues of previous PM's.
Good god!

Maggie quite horrific.

Onwards under Bridge Street

through tunnel, like tube station

I say,

and there it is

MP's own private entrance to tube.

Up and out into Portcullis House,
cost millions to build, apparently.

Tea and business.

Explain our situation

stress how long we've been battling governments

and losing friends.

Show him letters

articles written over the years.

He asks what we actually want,

specifics.

Talk about money

on-going support and lump payments,

input into future treatment decisions,
everything in Lord Morris's Bill.

Will he support EDM?

No.

They are government graffiti.

What will he do??

Stresses his support of our campaign,

will attempt to get written question,

asking government to clarify their position.
I will send him the bill and David Cameron's letter.

Mum's a cynic.
Understandably.
I feel quietly optimistic.
I think...

We leave.
Search out others.
Share experiences,
pints,
support.


So much more to do.