Day 5 – Infected Blood Inquiry Hearings – (7th May 2019 London)
Today we attended and heard the stories of three brave women either infected or affected by hepatitis C caused by contaminated blood in the course of differing hospital procedures, all extraordinarily different and yet with the same themes emerging that are common to all of us who have lived with this illness.
Her father Steven received contaminated blood products as part of his treatment for severe haemophilia. He ended up with both HIV and hepatitis C, both of which were subsequently passed on to his wife Barbara.
Lauren was a very young child at the time and talked of how they went from having a normal family life to it breaking down. Her father was deteriorating and getting progressively more and more physically and mentally unwell. This greatly affected the family as a whole, he became violent and her mother became dependent on alcohol as a way of coping with it all.
Her mother concealed her own illness for a long time before calling a family meeting, where she sat her children down to explain that she also she was also very ill. Within a relatively short space of time after this, both her parents ending up dying within a week of each other in 1993. Lauren was only 9 at the time.
As a result, she and her remaining family (her brothers from a previous marriage) were separated, causing her even more anguish throughout her teenage years. Years later, she bravely managed to negotiate life alone and start to rebuild her life, with no family support, or financial assistance, before finally finding some solace and meaning through an opportunity at her place of work, whose designated charity was one for people with HIV and AIDS.
Since then she has started to feel empowered and be open about her experience and talk to others as part of her campaigning, including being featured in a Panorama documentary, along with Michelle (see further down) and others a few years ago – see here www.youtube.com/watch?v=C5W56h8bqUA.
Fiona was diagnosed with Von Willebrands disease at the age of 4, which meant much of her childhood activities were restricted due to concerns about that. This also meant that no dentist was willing to help her sort out her teeth, some of which needed removing as they were so crowded and growing at all the wrong angles. This affected her confidence so badly as she looked so different to her friends, that at one point she took out some of her own teeth with a pair of pliers and she described how her Mum found her, with her mouth streaming with blood.
She was eventually given Factor 8 to help her blood clot, which meant that a dentist was willing to deal with the problem when she was a teenager.
After this she endured various health problems over the years, including problems with her knees and an underactive thyroid and in 1985 she was tested for HIV, which was negative.
It was not until 2011, as part of a screening by occupational health for her work as a paramedic that she was diagnosed with hepatitis C. She hadn’t even been told she was being screened for that, so this was a complete bombshell in itself, never mind that this news was delivered to her by phone in the ambulance she was driving at the time to attend to a serious road traffic accident.
Understandably floored by this news, she pulled over to talk to them and they advised she had to stand down as of that moment as she was no longer able to continue in her duties due to her infection.
After she had got over the initial shock of all this, it caused her to feel paranoid about all the patients she had attended to over a 25 year long career in this role, causing her to worry excessively about whether she could have ever accidentally passed on the illness to anyone else. She also talked of how she subsequently felt so fearful of also infecting her family that she would obsessively boil wash all their clothes.
When she was referred for specialist care for her hepatitis C, she was advised that managing symptoms and palliative care was the only option available if her genotype was not suitable for treatment. This was terrifying for her as because of her medical experience she was familiar about how devastating liver illness can be.
A liver biopsy was arranged but because of the Von Willebrands disease further tests were necessary before they could go ahead. When the results came through she was told that in fact she did not have Von Willebrands disease. This misdiagnosis was not explained to her fully, but it meant that she had been infected with a blood product that she never actually needed in the first place.
As a result of her losing her job, her family life was greatly affected and she was led to believe that there were no treatment options and she was dying.
Fiona had never talked to anyone apart from her husband and her daughter about her diagnosis so had to negotiate all of this with little support.
Eventually she was referred to another hospital and offered a new treatment despite funding being an issue for a while which caused further delays. Her treatment experience was not good, she was physically and mentally unwell for the duration and it was soon after this as a result of the loss of income from her wages, they ended up losing their house in the midst of all this.
She opened up to the rest of her children about what was going on for her but told them that they mustn’t tell anyone as she was so fearful they would be ostracised or that people would not come round to the house anymore.
She did eventually clear her hep C and was discharged from the hospital. At this point she was able to return to work, but made a plea for ongoing appointments for scans to keep a check on people who have been infected then had a battle on her hands as her occupational health team refused to believe that she was cured and her doctor had to write on four separate occasions to persuade them.
Later, when she started her own business with a friend, they needed OFSTED approval and she then also had to battle with them as they had the same concerns about her still having hepatitis C.
Michelle received infected blood in 1987 and also in 1991 after childbirth complications. She thought no more of it until the 90s when she saw a programme about infections and blood transfusions. She went to her GP but he didn’t feel a test was necessary and told her not to worry and more years passed.
Despite feeling unwell on and off and suffering with severe fatigue, she was then diagnosed with type 2 diabetes, and often the symptoms she was experiencing got put down to that and the fact that she had a family, one doctor even telling her “what do you expect?” when she described how exhausted she felt.
When she finally got diagnosed in 2015 she then learnt that she had already developed cirrhosis.
As a result of her experiences she runs a successful Facebook support group for others (Contaminated Whole Blood UK) and frequently appears in the media, taking the opportunity to raise awareness and offer support to others who have caught their hep C in this way.
She talked of how the hep C and its treatment have left her prone to feeling emotional and sometimes overwhelmed and feels that on the many occasions that she could have been tested she was either ignored or overlooked and as a result remains very mistrustful and also badly betrayed by GPs and other medics.
It is an incredibly humbling experience to hear the testimony of those who are speaking out and here at the Trust we are appalled to hear of the insensitive treatment and poor information that has been given to people infected, something that has taken a toll on them in ways beyond the devastation of the illness itself.
Whilst attending these hearings wherever we can, we are meeting a wide variety of people infected, affected and interested by this specific issue of infected blood and blood products. It is incredible to see the mutual support and respect that those who are attending are giving to each other and a privilege to be able to contribute to supporting those affected in any way we can.
So, if anyone has concerns about any issues related to hepatitis C, infected blood on the NHS, or needs support in connection with the Inquiry, please don’t hesitate to call us on our helpline, 020 7089 6221 or email firstname.lastname@example.org.