Tuesday 27 July 2010

CONTAMINATED

Cruel, blood bourne virus
What did they do to deserve you?
Which batches of life saving treatment
Concealed you, left you waiting
To cause your devastation
For years and years and years?

Like characters on a stage
The infected ones play their part
In this real-life tragedy.
Life, death, love, suffering
Is their plot; performance not rehearsed
But delivered with anger and passion.

No producers here; the cast
Of thousands, self-selected, whittled down
To those with energy and drive.
Scene shifters, lighting and stage crew 
Keep this show on the road.
Masking grease paint conceals the hurt.

Already numbed by disease
Each waits to speak their lines.
No first night nerves as they plead
For help to make their lives bearable.
Contamination tortures their minds
As well as their bodies.

Dave calls for justice,
Through letters, emails, talks;
Peter challenges through court;
If his legal aid stops, his case
May be dismissed; already cloaked
In anger, they fight on.

Paul's health brings him close to death,
His chance of life a liver transplant.
Fred waits with him, friendly, supportive,
Although a fellow sufferer, he drives Paul
Ninety miles to hospital.
Life must go on.

Widowed Maureen mourns
Her husband's tragic death,
Remortgages the house for income.
Ros, fatigued and aching from her
Bone-rotting treatment
Waits to find active life again.

Simon speaks of stigma
Suffered by his family.
Cheerfully he continues, with David,
To follow up, research any avenue
Which may open, shed new light 
On this complicated drama.

Their performance fall on deaf ears;
The ever-changing bureaucratic audience
In the best paid seats, listen
Fall asleep, bored by this tangled plot
Of anger and emotion,
Difficulty and hardship.

The players in turn re-think, rehearse,
Soliloquies become entreaties:-
"Won't someone listen, please?
We may be amateurs but
Is our performance not worthy?
Does no-one understand?"

Mouse-Trap like, this show runs and runs.
Never a best seller, the dedicated actors
Replace those dying, as the years
Roll by in agony.
Within a waiting audience a few
Applaud their efforts.

The somnolent bureaucrats slowly wake,
Not altogether ignorant of the facts;
The players wait to hear reaction,
Hoping for a final performance
Of the wrong that can never be righted.
This injustice must be recognised.

And I, like the prompt, sit in the wings
Night after night
Listening to every word,
Waiting expectantly for the final curtain,
The thunderous applause of justice
In recognition of this long running show.




Juliet Batten                   July 2010
Some names have been changed, some are who they are...

Monday 19 July 2010

Blood Sweat and Tyres 2010

'Blood, Sweat & Tyres’ was started in 2005 and is off-road mountain-biking dedicated to raising money and awareness for 'The Haemophilia Society'. 

Trails are selected to be physically demanding in order to be worthy of sponsorship, but with the objective of giving both an extremely enjoyable and rewarding experience for the riders.

The Haemophilia Society was established in 1950 and is the national charity in the UK of and for people with Haemophilia, von Willebrand's and related bleeding disorders. It has over 4,000 members and a network of 16 local groups throughout the UK. It provides information, advice and support services and advocates; and campaigns to secure the best possible care and treatment.

For more information please visit the official Haemophilia Society web site at:






The details for this year's ride are as follows:

2010 - South Downs Way 

This year BST regular Raj Patel is organising a ride along the South Downs Way - 100 miles from Winchester to Eastbourne over the weekend of 7th & 8th August 2010.










Raj is looking for riders to join him, Mike (another BST regular) and Dan and raise more money for The Haemophilia Society.

Any volunteers??

More details can be found on the Blood Sweat and Tyres website:  

Blood Sweat and Tyres 2010

If you'd like to sponsor the riders the official just giving page can be found here:

JustGiving - South Downs

It's a very worthy cause....

Monday 5 July 2010

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.