UK Inquiry Edinburgh Oral Evidence sessions, live feedback as it happened.

Joint member meeting – Saturday 23rd March 2019
16th March 2019
Joint Member’s meeting – SIBF and Haemophilia Scotland – Saturday 7th September 2019
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UK Inquiry Edinburgh Oral Evidence sessions, live feedback as it happened.

An SIBF member records, ruminates and responds to key oral evidence provided by infected and affected people in Scotland.

Extract from the member’s twitter stream are tabled below.

Live Tweets from the Infected Blood Inquiry – Edinburgh Oral Evidence Sessions 2019

@Change4G00D

Date

Main

Short

2 July 19

The Scottish part of the Inquiry included an opening statement by Sir Brian Langstaff. What a stark difference in approach and humanity this gentleman brings. His humility is refreshing, his forensic determination to fearlessly get to the truth is encouraging. Here’s hoping.

‘Penrose’ is the name which cannot be spoken.

2 July 19

Imagine finding out your child had AIDS through receiving a standard letter, out of the blue, with just your name and the name of your child written in by hand. Let’s hear it for personalised care, compassion and reflective practice.

At least Penrose got the bit about clinicians’ paternalistic attitudes right.

2 July 19

How comforting to know that Hep C is not life threatening, it is just life shortening. Yip, go figure.

… said Dr Tautology.

2 July 19

Anti-viral Hep C treatment has significant impact on your physical health, even beyond that treatment ending and whether it was successful or not. But it also has a significant detrimental impact on your emotional and psychological self. Life shortening and life changing.

A cruel subversion of the Jekyll-Hyde personality instability.

2 July 19

Is it worth it? Treatments for NHS given viruses result in the observation that the ‘cure’ is worse than the illness (‘horrendous’, ‘terrible’, ‘devastating’ and, and, and). Whatever happened to ‘do no harm’?

You go to them to get better but they make you worse. You go back to them to fix the new problem and they make you worse again.

3 July 19

Intelligent, articulate people were treated like belligerent children by senior clinicians just for asking reasonable questions about blood safety which doctors seemed to view as, at best, inconvenient and at worst due to supposed ignorance and selfish time-wasting.

Doctor knows best … what’s it got to do with you, you’re just the patient!?!

3 July 19

Families are left to wonder what was going on? A young professional was left to feel ashamed of how she felt. A husband-father was left frustrated and angry. Young children are left to try and understand their mother’s unreliable behaviour because something was obviously wrong.

A classic example of why the ‘infected’ person is certainly not the only one who is ‘affected’.

3 July 19

All aspects of family life are impacted by a course of anti-viral treatment due to the horrendous sife-effects. The practical consequence is that children don’t have a mum every other day. Basically they are orphaned by the state, but no package of care is provided.

Who is looking out for the children and other carers of infected people? An overlooked cohort.

3 July 19

Memory loss as a side-effect of infection and/or anti-viral therapy. Isn’t that just another way of taking away someone’s life? All those cherished recollections of special moments, beloved books, and important events … stolen.

Yes, there is more than one way to take someone’s life, not just death.

3 July 19

Parents put on a brave face so the children don’t get scared. The children put on a brave face so the parents don’t need to worry. Everyone ends up being scared and guilty but didn’t want to scare everyone else or risk apportioning blame within the home. So, so sad.

Family life should not include such complicated inner turmoil for each member? Home should be the place to be at ease.

4 July 19

Death comes in different forms. Finding out you might have to have a lead-lined coffin means that even in death the virus still has hold of you. Or, after a diagnosis, having to tell previous sexual partners about it can be a different form of dying, inside.

They remove our dignity, while alive and in death, too.

4 July 19

Attending a clinic for infectious diseases:

* posters about staying safe while injecting illegal drugs

* boxes of condoms on a coffee table

* sitting facing a man in handcuffs flanked by prison guards

* worrying that someone you know will walk past and see you …

So please don’t ask what could justify our feelings of being stigmatised.

4 July 19

There will be doctors sitting watching the live feeds of their former patients’ testimonies to the Inquiry. What is going through their minds? Is it regret, resentment or something else? Are they now drafting their apologies or their rebuttals?

There is a certain irony to see so many NHS bodies described as ‘Trusts’. Too late, the trust was killed off years ago.

4 July 19

The Contaminated Blood Scandal took ordinary, private citizens – some with a bleeding disorder concerning joints and tissues – and forced them to face very detailed personal questions about their sexual behaviours and other sensitive issues.

Ordinary folks were made to endure humiliation, embarrassment and shame, made to feel dirty and afraid.

5 July 19

A passion from youth – climbing mountains – was taken away by a terrible virus. The loss was felt to be as great as if it was the loss of a loved one. Life then becomes one of climbing very different mountains. And these summits require passing through deep valleys.

Our lives consist of climbing mountains every day, but never to enjoy any spectacular vistas.

5 July 19

A senior clinician sat on a letter about a patient which included an admission that even very small traces of the virus (low enough not to be detected by the usual testing regime) can still cause infection. What does that say about the ‘cure’ from the new therapies?

‘Cure’ is not the same as ‘sustained viral response’. We know all about unsafe claims about an unsafe products.

5 July 19

After just 4 days of oral evidence sessions in Edinburgh, the UK-wide Infected Blood Inquiry has heard from more than twice the total number of victim-survivors than those allowed to be witnesses in a public session during the whole of the Penrose Inquiry.

Instead of being part of the solution, the Penrose Inquiry was part of the problem. Six years and £12m gone.

5 July 19

Other countries were testing donations as far back as the 1960s in some cases. This country was latterly testing recipients to see if infection had happened. A classic case of slamming the stable door shut after the horse has well and truly bolted.

So much for the UK’s smug self-belief that we have the best public healthcare system in the world.

5 July 19

Bad blood has sometimes turned previously positive, able, contributing individuals into ‘bad’ people; at least in extended episodes. Some of us are still suffering for our darker periods. Anti-viral treatments are necessarily toxic to the body; but also the soul.

We don’t seek sympathy, but a bit of understanding about the effects of a mostly invisible health problem does help.

5 July 19

Those giving evidence to the Inquiry in person understand the responsibility of telling their story, not only for themselves, but as a proxy and representative for all the rest of the infected and affected population not appearing in person to give oral evidence.

The community catharsis of hearing and sharing our experiences in public is part of the healing.

5 July 19

There are those times which are indelibly imprinted on your memory. Collectively, it may be a thing like, ‘where were you when the planes flew into the twin towers?’ For the infected and affected it is the moment the penny dropped that you had a deadly virus.

That phone call, that letter, that meeting, that website, when you grasp the seriousness of having a dangerous virus.

5 July 19

You learn to live with, and try to compensate for, life with a scary virus. But the unpredictability of symptoms mean you cannot plan very far, if at all, into the future; career, savings, holidays, having children … Uncertainty becomes normal.

The best laid plans of mice and men are of no interest to a blood-borne virus.

5 July 19

You form a relationship with mutual interests of active outdoor pursuits. You then get a virus which stops you doing those things. Then there is the dilemma. Do you focus on your time together, so restricting the other’s activity, or let them keep going without you.

If you love someone, should the newly limited one let the other be free without them, or should the other forego?

5 July 19

First there is the initial shock of being told about having a deadly virus through no fault of your own; the rest of that day is lost. Then comes the next morning with the benefit of a night to sleep on things (maybe helped by alcohol or tablets). Now what?

It changes everything. Those transition days when you come to realise things will never be the same again with a virus.

5 July 19

A husband becomes the constant carer for his wife who was infected with tainted blood. The toll on him was devastating. One night of vulnerability leads to an unplanned attempted suicide, (unsuccessful). Only then was a small care package put in place (15 hrs pw).

Why must it get to a stage of desperation before even a measly bit of state help is provided? They did it to us, right?

8 July 19

The good news of not having cancer, or AIDS, or IBS was supplanted by a Hep C diagnosis. Then the questions started about illicit drug use, promiscuity, then the children experience bullying, other people don’t want to use the same glasses to drink from, and so on.

Hep C is bad news, not just to hear but also to have.

8 July 19

The benefit system can never be the appropriate response to supporting contaminated blood victims. For example, you say you are feeling strong enough to submit to anti-viral therapy, and that is interpreted as sufficient grounds to remove DLA.

Benefit passporting is the only fair response to contaminated blood. Assessments are too ‘one size fits all’.

8 July 19

The popular view of Hepatitis was that it was a ‘junkie’ disease, only associated with illegal intravenous drug use. Comments in work and social settings reinforce the idea that it is a dirty disease running through the veins of dirty people.

Stigma is an ugly word with connotations of being dirty, bad, unwelcome, untrusted. Not very good for your self-image.

8 July 19

Non-specialist medical professionals usually didn’t know enough about Hep C to properly advise newly diagnosed people. Counselling provision remains scant, with virtually no therapists having sufficient condition knowledge to be effective in providing support.

Contaminated blood viruses definitely do not fit the concept that ‘ignorance is bliss’.

8 July 19

Having to admit, in the course of giving oral evidence, that you have not been able to enjoy intimate relations with your wife for over 10 years is almost too unsettling to hear because of the empathetic recognition of how hard it is to say such things out loud.

Is there no aspect of personal life not negatively impacted by the Contaminated Blood Scandal? Even in the bedroom.

8 July 19

A ‘change of nature’ in an infected life partner presents a major challenge to the relationship both had entered into originally. The person you had set up home with has been replaced by a different person. You can’t even discuss it together since one is not there.

It’s not always killing. It’s like state-sponsored abduction, replacing the love of your life with a near zombie.

8 July 19

If they made a film about the personal stories told during the oral hearings, it might best be placed in the horror genre. Imagine the scene, a wife is laying in bed looking at the ravished skeletal body of her husband. His eyes open, they are red with blood.

Could there be a more exquisite cruelty than being made to watch your loved one slowly, agonisingly, horribly die?

8 July 19

Real: “Infected Blood, a free online … game … by Armor Games. … the scary world full of the living dead. …evil zombies … hidden secrets is waiting for you in this bloody city. Try to stay alive and find a way out. Can you survive in this dangerous place?”

Yes, there really is a game called “Infected Blood” and it really is made by a company called “Armor”. Seriously!

9 July 19

A roller-coaster of emotions. A wife is unexpectedly told she has HIV, then the worry is that the husband may have been infected by her, then when he is discovered to be not infected it is the relief of the wife that he is safe … still to process her situation.

The human capacity to cope under extreme stress and shock, such that first thoughts go to other’s wellbeing, is amazing.

9 July 19

HIV infection came from a transplant kidney from a young man killed in a road traffic accident. He received contaminated blood as attempts were made to resuscitate him. Those who received the other kidney, and the liver, and the heart, were also infected with HIV.

In all innocence and good faith you go into hospital for a life-saving operation, but you come out with a death sentence

9 July 19

The labels applied to people who ask questions: difficult patient, trouble-maker, AIDS wannabe, scaremongerer, conspiracy theorist, money-grabbing opportunist, ungrateful, and more.

Labels are easy to stick on, some we reject, some we adopt … patient, toxic, victim, survivor …

9 July 19

While mum is expecting the first baby it is discovered dad has viral hepatitis, producing family fears. During the second pregnancy, a difficult one, dad gets very ill, life is hard. The thought that maybe miscarriage would be for the best crosses the mind. Ouch!

The Contaminated Blood Scandal forces families to contemplate harsh choices and consequences that no couple should face.

9 July 19

As a teenager a letter comes through to tell a young man he is infected with viral hepatitis. Immediately afterwards, he leaves to go to school to sit an exam. The unavoidable question going through his adolescent mind is, ‘What’s the point?’

Being informed you have viral hepatitis as a teenager and thinking ‘what’s the point?’ how that must affect your future.

10 July 19

Research involving over 7000 nurses and doctors in the US reported that 84% who saw situations where set protocols for safety and procedural practice were not being followed, when they raised it with senior clinicians, were ignored or they just didn’t speak up.

With so much malpractice being reported, is there anywhere any actual respect for the concept of clinical excellence?

10 July 19

After two horrific, failed attempts at anti-viral treatment then the new ‘cure’, the so-called ‘miracle man’ is left with a catalogue of impairments affecting different organs and systems of the body. The legacy of contaminated blood remains not just in the memory.

‘Unlucky’ to get a batch of bad blood, ‘lucky’ not to die from the infections; the quandary of contaminated blood.

10 July 19

There is a recurring theme, especially in respect of transfusion victim-survivors, of the difficulties in accessing Skipton Fund payments. These were set up unenthusiastically by the State, then set up to minimise financial costs to the State. Shame on them.

Skipton and other schemes were never fit for purpose … deliberately so.

10 July 19

Settings where safety is paramount must pass the ‘coffee stain’ test. You get on an airplane, fold down the table and see a coffee stain. Then you worry, if that wasn’t fixed or checked, what else has not been done right that could have more serious consequences?

Safety should be the first, second and the ultimate consideration … but not for infected blood patients it appears.

10 July 19

When viral hepatitis was diagnosed a young woman was made to feel, by the doctors, that she must either be a ‘junkie or a prostitute’. Soon thereafter she went into hospital to have a baby and was made to feel like a leper; exclusive toilet use, room furthest away.

Peoples’ thoughts about us are important; or at least are of interest. What our doctors think of us is very important.

10 July 19

Loss of health, loss of career, loss of social life, loss of relationships, loss of mental stability, loss of standing in the community, loss of confidence, loss of hope, loss of enjoying life, etc. But the ones who have not suffered loss of life are the lucky ones.

There is a stretched use of the word ‘lucky’ when those still alive describe themselves as the ‘lucky ones’.

10 July 19

During a break in the oral evidence sessions the father of an infected person played guitar and sang a song he had written about the contaminated blood scandal. Sadly the legal team from the NHS kept talking through it, until someone from the Inquiry spoke to them.

The Contaminated Blood Scandal brings out some wonderful aspects of humanity, but also some less thoughtful responses.

10 July 19

Another recurring theme is not just about missing medical records, but also of notes and letters being discovered within patient records that the patients themselves had never before seen or received. It begs the question, why would these items only be found there?

Of course they wouldn’t ‘invent’ or ‘create’ a letter to make it appear like the right things had been done. No way.

10 July 19

In case there was any doubt … Yes, there is a game called Infected Blood made by a company called Armor Games. No, you couldn’t make it up.

Some say there is no such thing as coincidence, but a game called Infected Blood by a company called Armor … really?

11 July 19

Oral Ans: D Lidington: … response to hon Lady. The DHSC announced a major uplift in financial support to beneficiaries … in England, talks are going on with devolved Govts about a UK-wide agreement. Questions of legal liability fall therefore to compensation…

The UK Government are still refusing to heed the call for compensation now. This oral answer on 10.07.19 in Westminster.

11 July 19

The US-originated FVIII (from Armour) came in a package with everything needed for home treatment … and that was for children, since the butterfly needle was a small size to suit children’s veins. Yes, it was put together specifically for children.

A toxic treatment, a poisoned product, known to be contaminated, was packaged for children, many not previously exposed.

11 July 19

FVIII home treatment records, that were kept in the house by parents, were requested by the Haemophilia Centre to be brought in so they could be ‘photocopied’. These records were never returned. It was around the time they were told of their twin sons’ HIV status.

It is easy to conceive of a conspiracy when these coincidences keep happening; not as theories but as conspiracy facts.

11 July 19

Before a family holiday to England, the Scottish doctor said a boy was to avoid English factor because it was ‘poison’. Treatment was required, and the English doctor said the product there was completely safe, unlike the treatments provided in Scotland. Duh.

‘Our product is safer than your product.’ ‘No, your’s is bad, ours is safe.’ ‘Na-na-na-na-na!’ (sticks tongue out).

11 July 19

“Ok, so you’ve got Hepatitis C. Don’t worry, there’s nothing to worry about, you’ll be fine. It will be 25 to 30 years before anything bad will happen. Oh, and don’t ever have any children either. Any questions? No, ok.” … Speechless.

There will be no problems and we can live a normal life, but as an afterthought you’re told you should never have kids!

11 July 19

To destroy evidence, the minutes of government meetings and letters were shredded. To destroy evidence, our medical records were altered or ‘lost’. To destroy evidence, some of our loved ones had to be cremated instead of buried. No evidence, no proof of liability.

The oh so obviously coordinated efforts to destroy evidence, paper and people, must itself be evidence of cover-up.

 

 

 

 

1 Comment

  1. Anonymous says:

    Every testimony was uniquely personal, yet they were woven together with so many common threads, such as broken trust, injustice, tragedy and lingering sadness. All those who gave oral evidence did so for themselves, yes, but also as representatives of us all. Respect goes to each one of them.

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