Steve Sillett .pdf
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I AM WRITING TO YOU ALL, not only as an update on my father in law Mr Stephen Sillett, but also to
bring to your attention the disgraceful and sickening treatment of him and my mother in law now by the state.
Mr Bacon, you will be very familiar with Steve as your constituent and I thank you for your ongoing support.
Mr Ruffley, as you know I have also written to you in the past, and I thank you for your written response
offering support in January.
Alistair, Jason and Diana, you are all well aware of Steve and his story so far, and I would like to personally
thank you all for your continued efforts on the APPG, and tireless work to bring justice to all TaintedBlood
Victims and their families.
Mr Hunt, this will probably be the first time you have heard of my father in law specifically, however I am sure
that you are more than aware of the issues that he and other contaminated blood hemophiliacs face, not only
now but in the past. I can assure you all, that due to the recent treatment that my father in law is currently being
subjected to by the state, this will certainly not be the last time you hear of him.
To reaffirm to all, my father in law was Steve, was first diagnosed as a hemophiliac at birth in 1959. Due to the
effects of the hemophilia to his joints, he underwent his first ankle fusion in 1996.
If you are unaware this means that Steve has both ankles fused at 90 degrees as there is no joint left. It was at
this point that he was diagnosed with Hepatitis C, which was confirmed to be due to the contaminated factor 8
that Steve had to inject to stay alive.
He battled against the effects of the Hep C, and desperate to try and overcome this, in 2003 he went through six
months of interferon and Ribavirin treatment. This was the worst six months of his life, and the treatment was
so toxic that it nearly killed him twice. It was at this point that Steve was diagnosed with cirrhosis of the liver.
Throughout all of this Steve continued to work as an HGV long distance lorry driver, working 60-70 hours per
week. Even during time off for operations to fuse his joints, he and my mother in law Diane, never once
claimed benefits. On the 18th of November 2014 following a routine liver scan, my father in law was
diagnosed with cancer of the liver, the final stage of chirrosis.
The prognosis given was clear; with prolonging treatment he could hope for 12 month left to live, or hope for a
I am pleased to say that on 25th of February we received the call to say that a liver had become available and
that it was a match. Me and my mother in law were kindly offered a day room to sit in and wait for him, and
after 9 1/2 hours in theatre, me and my mother in law got the call to tell us that he was out of theatre and so far
so good. At the moment Steve is fighting for his life in Addenbrooks.
The first photograph below is an image of this amazing, strong, positive man just before the transplant walking
The second photograph shows Steve fourteen hours later.
This is what the reality of tainted blood looks like. How would you feel if that was your brother, husband, kids
Steve was forced by us, and his doctors to stop working on the 12th of January 2015 as the Cancer was taking
its toll and if he didn't he wasn't going to be fit enough to pass the tests for transplant.
Since the 12th of January we as a family have been fighting to get them some sort of financial support. Steve is
currently only receiving SSP and Di has had to continue working in her cleaning role. His mortgage payments,
due to his condition are £1000 per month. He can’t get life insurance, mortgage insurance or any form of
forward protection and peace of mind for his home or his wife.
He immediately sought the help of Citizens Advice, he was told he was "too complicated" and their suggestion
was that if he didn't have any money, then he should consider selling his possessions and car… Really?? So
how on earth was he supposed to get to the hospital with no car??
He applied on the 12th of January for personal independence allowance. This, we were told was the primary
benefit and that once this was sorted, we could look at other options. PIP required a letter from his surgeons
and consultants declaring him terminally ill. Dutifully Steve asked for the letter to confirm the terminal illness
and this was sent to the DWP. Following this and numerous calls from him and me, he received a letter telling
him he had to "be assessed anyway, just to double check" double check you’re terminally ill???
The assessment date was ironically the same day as we got the call for the transplant, so on the way to the
transplant, in the car, I called the Department of Work and Pensions to say that he wouldn't be there that
afternoon for the assessment as we were on our way for the transplant. I was told "actually we weren't coming
today anyway as we have filled a paper based assessment out" no one had informed us.
Steve knew that in that car, it would be the last time for a while, or possible forever, that he would be able to
speak to them, and he wanted at that point more than ever to push on with getting some sort of support. He also
agreed at that point that I was the main point of contact. His worry on the way to the transplant wasn't about
what lay ahead for him, but what could be do to make sure that he could make sure Di has some sort of
I am now the person responsible to try and get the help they need.
8 hours after the operation, I sat on the floor outside Intensive care in the corridor to call the department of
work and pensions for an update. There are hostel rooms to rent in the hospital that are £50 per night, with no
money coming in, we couldn't afford to pay it whilst worrying about how my mother in law was going to
afford the petrol for 120 mile round trip every day for the next 3 weeks minimum and thereafter he will need to
be at appointments 3 days per week for at least six months.
I made the call, exhausted from no sleep for two days and asked for an update. I was told that "yes we have
received the report back, but we can't tell you when or IF any money will be granted!! I told them how long
this had been going on and was told "it does take a while". Sobbing down the phone I tried to say he was in
there fighting to stay alive and they need the money now, what other proof you need??
Come and see him in Addenbrooks if you need proof!!
They also told me, "He needs to apply for employment support" he's already done that and been refused, and
my mother in law has applied for carers allowance and been declined!!
So, I am writing to you now begging, none of us have anything left emotionally. All we should be
concentrating on is Steve and Di, but we can't. I know that when I speak to Steve one of the first things he will
ask me is “Have you had any update from the department of work and pensions re PIP, or carers allowance for
Di” I can't tell him about that horrendous conversation on the floor outside intensive care, and that we're back
to square 1 as it terrifies me he would lose some of his fight. Right now he and my mother in law need to
concentrate on his fight for life, not this ridiculous fight to get some sort of financial support.
He applied to the existing government “support” mechanisms set up for these victims. The Caxton Foundation
informed him that no financial support is available, however if he needed a new wardrobe or bookcase then
they might be able to help. How the hell does that help someone who is terminally ill, waiting for transplant,
not knowing if the cancer is growing inside you or not, not knowing how on the measly SSP (that he is only
receiving) will pay their £1000 per month mortgage payment, afford petrol in the car to go backwards and
forwards to Addenbrooks for appointments, how in fact are you supposed to live.
And my dear mother in law, she has been amazingly strong throughout; she has continued to work each week
at her cleaning job, to ensure that there is some money coming in. When she does go out to work however she
has the worry of who is going to look after Steve, what if he suddenly becomes ill? Now more than ever they
need help, and to date they have not received a single penny.
It makes me sick, and today I have contacted the Anglian News team who did a report recently on Steve and Di
which was aired throughout the region. This received a phenomenal response, and through social media
received massive amounts of support both in the UK and globally. They asked us at the time to let them know
when Steve got the call, and I have done that, but I have also told them all of the above.
How someone who is fighting for his life, is left without a single penny of support from the state. Not only is
the state responsible for the way that Di and Steve are being treated at the moment, the state are also
responsible for the whole contaminated blood scandal.
Through the support of the TaintedBlood group, who are like family to us, I have also passed this email onto
them and their press team. We are also sharing this on social media.
I wrote to the Prime Minister’s Office on the 26th of January 2015 and received this pathetic response which
was so badly formatted and the sender hadn’t even bothered to cover up the fact that areas had been copied and
pasted from other documents.
Our ref: PMDE000915787
Dear Mrs Rookyard,
Thank you for your email of 26 January to the Prime Minister about contaminated blood. As this is a healthrelated matter, your correspondence has been passed to the Department of Health and I have been asked to
I was very sorry to read that your father was infected with hepatitis C through treatment with NHS-supplied
blood products, and of the difficulties he has faced over the years. Many haemophilia patients who were
treated during the period to 1985 were infected with hepatitis C. The Department recognises the grievous
consequences this has had for many people and their families, and continues to have for some.
As you will know, successive governments since 1988 have established a number of financial support schemes
for people who have been infected with HIV and/or hepatitis C through treatment with NHS-supplied blood or
blood products, and their families. In recent years, the Government has worked to improve the system
further,with the aim of targeting greater resources at those in greatest need.
However, the Government recognises that many individuals remain unhappy with the current system of
financial support, and work on what can be done to improve it is ongoing. A key part of this work will involve
consideration of the final report of Lord Penrose’s Public Inquiry in Scotland, and the Department is awaiting
its publication, which, as you are aware, has been delayed.
As you know, on 15 January, Jane Ellison heard for herself a number of concerns voiced by MPs at the
Backbench Business debate with regard to the various charities and their administrations. The Department has
also received detailed correspondence from other affected individuals, and all of this information is being taken
into account in considering this matter.
There is a great deal of further detail in the All-Party Parliamentary Group on Haemophilia and Contaminated
Blood’s report, which was released on 15 January.
The Government would like to assure you that this issue is being looked at very seriously, and that an
announcement will be made to affected individuals and MPs once work has been concluded.
I hope this reply is helpful.
Ministerial Correspondence and Public Enquiries
Department of Health
Words on emails and letters are no longer good enough for us, it’s all very nice to receive a nice House of
Commons letter headed response, but it doesn’t prove or suggest action. Of course we know the detail in the
APPG report, we are part of it! And as for the so called support mechanisms, hopefully at some point whilst
trying to beat rejection of the new liver they might need a new bookcase or wardrobe…
I fully appreciate that you are in the run up to elections, but quite frankly we couldn’t care less what party you
represent, what promises that you are going to make, we want action, and now.
You don’t need to wait for Penrose, the taboo inquiry that to date has cost 12 million pounds.
I am now past patience, I am past nice email replies and letters with “I will write to my Right Honorable
colleague Mr Hunt” we don’t have time to wait for Penrose, there are bills to pay, food and petrol to buy and
my mother and father in law fighting to beat this and survive. There is nothing “honorable” about how they are
I look forward to hearing who is taking control of this on their behalf, and when they will receive the support
they need now.