The first part of Mike’s story was written prior to his death, and is written in his own words. The final part is written by his eldest daughter, Sarah.
This nasty, nasty, disease has completely shattered my life.
I’m 44 years old and until last year lived in Farnham, Surrey with my wife Ann and two daughters.
Up until the end of November 2008, I had quite a senior position within United Biscuits (McVities) where I worked in the international part of that business. My team managed roughly half of the world and I was lucky enough to get to travel all over the place. I thoroughly enjoyed my job, had a great time and have made some truly great friendships along the way. Unfortunately, I was pensioned off at the end of 2008, on the grounds of ill health.
I used to be a mild haemophiliac and only ever needed blood products for traumatic injuries / medical procedures. In 1982 I was treated with a product called Factor VIII. Prior to my treatment my liver function was tested and was normal. 12 months after the treatment my liver function was tested again and was abnormal, and the only possible cause was the treatment that I was given. It is now taken that for every haemophiliac, the first date of treatment with Factor VIII is the date at which they were exposed to Hepatitis C. Around 25% of British haemophiliacs were also infected with HIV.
Because I was a mild haemophiliac I was lucky enough to only require treatment as a result of sporting injuries or when I had surgery. Before my infection with Hepatitis C in 1982, I had only ever had one course of Cryoprecipitate. My liver function tests in 1982 prior to treatment with Factor VIII were perfect. Why I was changed from Cryoprecipitate to Factor VIII in 1982 is beyond me. There was no discussion, no dialogue, and no consent. The three treatments of Factor VIII that I had prior to heat treatment being established in 1985 were for teeth extraction and minor muscle bleeds caused by playing football. None were for life threatening situations.
The government of the day were fully aware of the risks involved in the new treatment – in 1980 a report to Ministers from an advisory group indicated a 90-100% certainty that the new treatment would expose people to non-A, non-B Hepatitis (later to become known as Hepatitis C).
I found out that I was Hepatitis C positive in 1996 when I was 28 years old, and then only by chance. I’d dropped out of haemophilia care as I didn’t need it. Within 2 weeks of seeing a haemophilia consultant I’d found out that I had Hepatitis C and that I had grade 5 cirrhosis of the liver, where 5 was the maximum. I didn’t even realise and thought that my fatigue was down to working too hard and not getting enough exercise. I was lucky enough to be able to carry on working as thankfully, I was not in a physical job – the brain seemed to continue to be working, even though the liver wasn’t!!
Following this, I was treated with Combination treatment (Interferon and Ribavarin) which did nothing except annoy me. I was injecting every other day so continually felt ill. I had the usual flu-like symptoms and felt generally ropey. The combination treatment is awful. It is 27 weeks of feeing like you have flu – and I am talking proper flu, where you feel shattered all of the time, not just a cold
Unfortunately this treatment didn’t work and I was eventually told in early 2000 that I would need a liver transplant. I literally went to pieces. I had previously been a very active sporty, energetic type, despite my haemophilia, and was now reduced to being a wreck. I was put on the liver transplant list and subsequently received a replacement liver on 2nd October 2000.
Thankfully I recovered relatively quickly. I had a great employer (United Biscuits) and a great boss who eased me back in. I was able to return to a full and active life with only some compromises. The transplant meant that I could do things I had written off being able to do. The family all learned to ski together. My daughter and I learnt to scuba dive. I started sailing, had a go at paragliding – in fact, I had a new lease of life.
There were some minor hitches in the next few years which included a bit of re-plumbing, hernia repairs, MRSA, and C. Diff, but nothing I couldn’t get over. That was until the summer of 2007 when a routine scan found cancer in the transplanted liver.
I was put on the transplant list again as it was suspected that I had developed cancer. I was advised that it would take four weeks or so to get a liver as cancer patients went quite high up the list. Eight hellish months later I had the second transplant, in April 2008. Surgery went well but the Hepatitis C came back very aggressively. Things were not looking good.
At the end of 2008, UB started the process to pension me off. I had the option to challenge this but given the circumstances and my state of mind, I think it was best for all that I took it. I couldn’t work then and can’t do so now, as I get too tired. Retiring was the only viable option that was open to me.
I was still Hepatitis C positive at this time; however it was running riot as I was heavily immunosuppressed to stop rejection of my new liver. The body’s defence against the Hep C was squashed and so it could do what it wanted to. The decision was taken to offer me the combination treatment again. This time it was for 72 weeks, and again was awful. The doctors at Addenbrookes put me on peg Interferon and Ribavarin which has thankfully controlled the Hepatitis C for the time being. I came off the combination therapy in February 2010, which was 72 weeks of it. I felt like I had flu and was extremely tired most of the time. I also had an almost constant run of infections and minor complaints, which became very, very irritating. There are times when I struggled to get out of bed in a morning as I just couldn’t be bothered.
Thankfully it was seen to be successful as the Hep C went undetectable.
As I understand it, I was the fourth person in the UK to have the combination treatment post-transplant. One of the first three didn’t make it, so as I mentioned, it wasn’t looking good. The lumps were confirmed as being cancer after the transplant. Cancer cells were found in the blood vessels of the liver, meaning that they might have got out, circulated around my body and started again.
There is a huge difference between my salary when I worked, and my pension. We have had to change our lives from top to bottom. It now means that I cannot do what I wanted to for my family, but we are all still here, so I’ll count my blessings. I also believe I am in a better position than so many others infected similarly infected, so I try not to go on about my lot, too much.
I am lucky that I did not get HIV. I am lucky that I was able to continue to work until relatively recently. I am lucky that I get a pension from the company which means that we can survive (survive, not live!!)
I am lucky that we have been able to stay in our family house although should the need arise we will have to sell up and move to somewhere less expensive. * I am lucky to have a caring and supportive wife and family. I am lucky to have two great kids who just get on with things without seeming to let our circumstances affect them. I was lucky to have had two transplants – unfortunately I’ve been told that there won’t be another should the need arise, but we’ll fight that decision as and when.
*Note: Since he wrote this, Mike has had to uproot his family in order to cut down expenses and move closer to Ann’s family)
Everything was going fine with the 2nd transplant until February 2014 when a routine scan, nearly six years after the op, showed that the cancer had returned. Unfortunately it was seen to be inoperable, and treatment options were very limited. A further transplant has been ruled out.
I’m now undergoing chemotherapy** however the chance of success is less than 10%. The original prognosis was that my cancer is terminal. If I make it to this time next year I’ll be doing well.
(Note** Since Mike wrote this, the chemotherapy has had to be discontinued as it made him so ill. He is now fighting recurrent infections, hoping to get well enough to try a final treatment in tablet form that might hopefully shrink the tumour and buy him a little more time with his family.)
Looking at the impact that this has had on my family and I is hard to explain. I had a senior general management role within United Biscuits, working in the International Division. I travelled the world with my job, having a team of managers across the globe and thoroughly enjoyed it. Following my 2nd transplant I was offered early retirement on the grounds of ill health. I had no option but to take it as I was too ill to return back to work.
The financial impact of this decision was that my package to pension difference was in the region of £65,000 per year lower. I was 41 when I was retired. When you gross this up to include a reasonable rate of salary increase p.a. and one promotion over the next 24 years, this would give a loss of income of around £2.25 M. This does not include any share options etc. To put this into perspective, UB has just been sold. A manager who worked for me will receive a bonus c. £500k as a result of this change in ownership. I would have expected to have received in excess of this.
My situation is atypical for haemophiliacs, I understand that, and I would not be expecting any government to put a support package in place to cover these losses, unless of course previous governments were found to be fully culpable of my infection – I believe they are by the way.
The impact that this scandal has had on my family is immeasurable. I am now not in a position to be able to provide what I should have been able to do. As you will understand, a reduction in income as indicated has huge implications like the payment of University fees, the provision of the nicer things in life, the fact that my wife has had to go to work full time to make the books balance, to the fact that we have had to move from the southeast to a more cost effective part of the country, leaving all of our friends behind. I shudder when I hear that house prices in the southeast continue to soar after we have moved out of the area.
As you may be aware Jeremy Hunt was my constituency MP until we moved. He is fully aware of my situation as we have corresponded regularly, and met on a number of occasions. I might have mentioned that I had a meeting with him in February (and Jane Ellison) where they invited me to meeting to understand what a potential settlement would look like.
The impact that this scandal has had on individuals varies. The packages offered could be pro-rated to reflect this i.e. those most severely affected receive 100% of the package , those less so receive some proportion – it would be quite easy to put categories into place to cover the differing levels of impact, thus managing the overall cost. It would also be all inclusive,
The financial impact of this scandal is only one part of how this has affected me and my family. The chances are that I will be dead in the next 12 months. Nothing will ever repay this. I won’t be there for my wife and two daughters. I won’t get to walk them up the aisle. i won’t be there to see their grandchildren. My wife will be on her own. We won’t be able to enjoy our move to the lovely Yorkshire Dales. I look out of my window now and see what I am going to be missing – the diagnosis of cancer came three weeks after we had completed on our house purchase.
The only single thing that will mitigate the impact to a certain extent is a financial package that makes my wife and family financially secure for the future. No apologies or potential criminal prosecutions for what have taken place will mean anything and it is time that the Government sorts this issue out. We have had years of pain and anguish as a result of the actions taken by previous governments. They knew the risks of moving from a relatively safe product (Cryoprecipitate) to the massively riskier Factor VIII. The risk involved with me passing Hep C to my wife and children have been frightening. People automatically assume that Hep C infection is due to intravenous drug usage and living with the stigma of it cannot be underestimated.
The current Government have resolved a lot of the outstanding issues – Hillsborough is being resolved, Icesave has been dealt with, Equitable Life has been resolved. This is the last big issue that remains undulate with, despite previous attempts.
I have tried to keep this brief, but as you’ll see it’s not that easy. If this is a little incoherent I do apologise, but I am currently sat here hooked up to a pump delivering my chemotherapy.
My eldest daughter is now at university*** and I am not be able to provide any financial support for her which upsets me tremendously. Realistically, if I make it to the age of 50, I will be lucky.
This is the impact that this wholly avoidable infection has had on my life.
Whatever the reasons are for changing me from Cryoprecipitate to Factor VIII when I was 15 years old, has had the impact of ruining my life. I have gone from being a fit, active man to someone who can just about manage day to day. I have gone from having a senior role flying around the world and thoroughly enjoying life, to a being a retiree at the age of 42. I have gone from having a relatively good income to scraping about to make ends meet.
I have gone from being able to provide for the needs of my family to not being able to do so.
This nasty, nasty, disease has completely shattered my life.
***Note: Mike’s daughter has since left university and is now forging a very successful career in catering.