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Witness initial request

our next witness is David that's correct yeah David please please state your full name my name is David Robert Gavin Rankin take the book in your raised hand I swear by Almighty God I swear by Almighty God that the evidence I shall give that the evidence I shall give shall be the truth shall be the truth the whole truth the whole truth nothing but the truth David you have haemophilia a and you started breathing when you were very young and you'd been adopted and so there were concerns that your adoptive parents were mistreating you that's correct but then you were diagnosed with haemophilia by a family friend GP who spotted the signs and you were told that it was severe initially yes but subsequently that was changed down to moderate yes in the 1970s 1970s there was a rediagnosis mild moderate while you were growing up as a child what impact did the haemophilia have on your life I was prevented from doing a lot of things I was encouraged not to do any activities that could potentially cause me harm the main impact would have been at school when I was prevented from any sort of physical activity so I believe teachers didn't want the responsibility of being in charge of when an injury occurred so for instance I was very keen to play football as young lad but prevented from doing so because of the risk of injury however I was given a linesman's kit and encouraged to run the line not the same thing my hero was Gordon banks and I wanted to be a goalkeeper you were initially treated with plasma then with crime precipitate until about 1983 yes and we'll come to the 1983 point in just a moment your mum passed away about five years ago but when she was still alive she organised for your medical records to be obtained and you had a chunk of them at that point yes and within those documents there was a document from 1969 we're just going to have a look at that it's m3 742 double zero five please Henry we can see that it's a letter to your family doctor at the time that's saying that you'd received treatment for with cryo precipitate between August and September 9 in 69 and it indicates that this Center is taking part in a survey arranged by the MRC cryoprecipitate working party in order to discover whether transfusion jaundice occurs in patients suffering from hemophilia or Christmas disease who've been treated with blood plasma or plasma concentrates and the doctor is then asked to indicate whether or not jaundice had occurred following your treatment in August and September 1969 as far as you're aware did your parents consent to being part of that study I actually think this document came to light fairly recently as opposed to when my mother was trying to obtain records was I'm sure she would have reacted somewhat differently to that if she'd known about it as far as I'm aware my parents were not made aware of this study and certainly I did the first thing I knew was when this letter came tonight fairly recently as you were growing up there were discussions about you going to true laws but your parents didn't want you to go there no what was their thinking when I was initially adopted and it was discovered that I had haemophilia and offer was made to take me back and replace me with somebody else and my parents fought to keep me fortunately so my parents always had this attitude that I should stay within mainstream education and grow up with other people normal people and whilst Trudeau was offered the opportunity for extra medical care my parents felt that being in a school that was exclusively for people with medical conditions that possibly wasn't the best way forward for me and with hindsight you're very glad that you remained where you were indeed the statistics for haemophilia X I'm sure laws do not make good reading we'll come back to that feeling of and being very fortunate to be here in a moment you wanted to join the RAF as we were going up and you wanted to fly jets so you tried to join the school cadet force and they declined I went to Portsmouth grammar school and they had a combined cadet to force unit and attendance was compulsory you needed to do a minimum of a year attend an annual camp and one weekend camp and complete a proficiency certificate so your initial training syllabus I assumed I'd be joining it and when I was excluded I wanted to know why and they felt again that the risks involved in cadet training were not appropriate for something within the philia I did not want to be excluded from the activities that might be a great for undertaking and so with my parent support I argued and eventually the school said ok join the CCF and I elected to join the RAF section of the CCF your parents subsequently moved down to Cornwall and there you were able to join the local Cadet Force yes and at 16 you applied to join the RAF what happened so at that stage you could apply for a test in advance so at 16 you could fly to the RAF test in advance and they would test it was a short test weekend at big in hill to test your aptitude for pilot hand or navigator and I applied and was accepted and set off in the very early hours of the morning from Truro station 5:30 in the morning I remember to get to begin hitting Kent I arrived at begin he'll present myself to the guardroom and my name was not on the list so I was quite insistent and I said well I had travelled all the way from Cornwall I had the letter with me that was the initial acceptance letter so after a little bit of digging around somebody came to see me and said well I wasn't on the list because they sent me another letter saying that in view of the haemophilia in which I had declared I would not be suitable for service in the RAF and that letter had obviously arrived after right left to get too big in hill and on the strength of me being quite keen and insistent they said well sings you here you might as well undertake the testing can you fast and so the way it worked is at the end of the weekend the list was read out to first of all four pilots and four navigator and then for those who were lucky enough to pass the aptitude test for both pilot and navigator the lists were read out in alpha cat all alphabetical order and first list for pilot my name was not from a list for navigator my name was not on the list for pilot and navigator my name was not on the list so at that point I figured I had made a complete and utter fool of myself however because I was not on the list my name was last at red outlast having passed both the altitude test for pilot and navigator but subsequently the chief medical officer declined to allow you to go forward because of the hemophilia so initially I received a letter saying despite the past for the attitude tests in view of my medical history I was deemed unfit permantly unfit for service and I argued that such characters of Douglas Barda had successfully flown with the RAF despite being a WM t double amputee and at the time I cannot remember the name of point that somebody doesn't gone fairly major heart surgery and had also continued to fly with the RAF so eventually I was invited for an interview with the chief medical officer a good Street in London and I argued my case he argued not his case for the case on behalf of the accountants who didn't want to run the risk of training me only for me to be run over outside the base and being unable to fulfill my duties after a lot of to him throwing he did offer me a desk job which the pride of a teenager declined rather foolishly I suddenly realized that if I'd taken the desk job I probably could have transferred over into a flying role that's a later date that meant you had to decide on something that you've described as your plan B for your career Plan B had already been initiated the process of argument the RAF took some six years I didn't really give up arguing so that was 21 22 in the meantime I'd elected to find a job and I found a job national Westminster Bank your parents then moved away from Cornwall and you went with them yes and ended up working in a bank in London initially in Crawley and then I got transferred to Haywards Heath branch where I ran into a chap called dick Simmons who something we became the training manager for the area and he spotted something in me which I hadn't spotted and he got me a job I've got me on a training course for role in London in the Salton Sea in that recovery office say yes I ended up working with his cross that time line of being in Cornwall then moving on up to eventually to London helps you pinpoint the date on which you received factor 8 yes and that you believed infected you with hepatitis C I've been very fortunate informal so from tail end of 1979 onwards I hadn't received any treatment at all and then I joined the bank on the 2nd of August 1983 at Tuesday the following Monday I was playing rounders with the local Rotaract Club on the beach near Travis head in Cornwall and I was second in to bat and the person in front of me robbing throwing the bat on the floor threw the bat over his shoulder I hadn't anticipated that and it hit me in the face poking my nose my cheek and blacking my I say I ended up at trellis Hospital in Cornwall just outside Troy we've half opened a package of frozen peas clutched to my face hoping they'd have a look at it and sorted out for me and that was August 1983 it was it was August 1983 at that point when you went in you received factor H product and you believed that that they weren't necessary on that occasion can you tell us why you think that the swelling was no longer increasing the the battered that walloped me I hadn't lost business it it broke in the joint between the cartilage and bone but it wasn't to my mind a severe injury yes I'm looking at bracketed to date was it a head injury of sorts but it's a I wasn't suffering from any news yet bleed seemed to be under control it seemed to be sorting itself out and I would have preferred to have waited 24 48 hours my usual mo for bleeds was my would clot and either it would hold or it wouldn't hold and so subsequent to this I'd often leave things for 24 hours but before doing anything else in when you receive the factory will you warned of any risks involved in receiving it I have no recollection of being told that there was a risk with the treatment and I have had this conversation subsequent in my parents and neither them remember it being mentioned at the time because although I was over 18 my mother was accompanying me because I wasn't fit to drive myself to the hospital and so she had driven me and you've tried to obtain your medical records from Lisco spittle but you told they've been destroyed my mother did that on my behalf so when I started become ill in the mid-1990s I deteriorated slowly but mentally a little bit quicker than physically and my mother took it upon himself as was in her character to try to find my medical records to pinpoint when this infection must have happened and she was told by truelist hospital of my records were no longer available and they had been destroyed she did inquire whether I had any records of the treatment that they used and what they'd had and what they done with it and they said no they didn't have either subsequently there is an entry in your UK hcdo record yes of the treatment yes did you ever receive factor eight again after that incident as far as you know I think possibly I did I'm not certain the next time I can recall receiving treatments will have been when I moved back to the southeast and was registered with Sen Thomas's and there's first time I can recall requiring treatment expecting to get factor eight I was offered either ddavp or transatlantic acid which surprised me until I was told that they thought they had some issues with failure rate so you'd gone in expecting factor eight at that point you were offered something different and what exactly did you say and what did they say I was suffering from nosebleeds and I was expecting to be treated with factor 8 and since honestly said and I would rather go down the route of trying these alternatives and in the end for the injury my nose was cauterized did they say specifically what they were concerned about in the factory I cannot recall that all I know is that my recollection is that there was an issue with it in 1990 you were working in London and went for a routine check-up at the hemophilia center yes and you received a phone call a few days later can you tell us what was discussed on that phone call so I can't remember the day but you know I've been in for a blood test and they telephoned me and asked they said they've got some interesting results and they wanted to inquire whether I had been drinking the night before and I said well yes there been some he's leaving dinner I had three or four points and they said oh okay that possibly explains the results that we've got I inquired what that was and they said some of your liver functions enzymes are elevated and that was the end of the conversation I was reassured by the fact that they thought it was possibly down to a bit from then until your diagnosis was there any follow-up of those blood tests that you're aware of not that I recollect at the time I know some subsequent conversations that in addition to the blood tests they were also testing for at least HIV and I think something they did mention they were looking for non a pain on happy as well but as far as you're concerned at the time between 1990 until nineteen until you were diagnosed there weren't regular checks of your liver function tests that you knew about no not that I knew about you then moved north because you received a promotion yes and in 1992 you started to struggle at work what's happening unfortunately I'm not being able to take my sickness record card but I can visualize it and the entries were regular for flu-like symptoms so I would ring up and say that I'm sorry I'm unwell and it's it's flu and these these flu occurrences were happening more and more regularly and I didn't think an awful lot about it but some of my colleagues sort of said you don't seem yourself you know it seemed to have the same amount of energy the same vitality and so it wasn't a huge surprise when the diagnosis was eventually given that I had hepatitis C with you'll move north your treatment transferred to Birmingham yes and you were asked to have blood tests what happened after that so I received a phone call saying that they'd like me to come in as a result of the blood test so I attended the hospital I wasn't able to see the the person challenge chosen wild a junior doctor spoke to me in a corridor and delivered the death sentence that I had hepatitis C he went on to say that he felt it was a as a result of my lifestyle choices and that was pretty much the telling of the conversation I was never to drive myself back from Birmingham to and that news was delivered in the corridor in a corridor with other patients around and people walking past yes after you had driven home you and subsequently met with John dr. Wilde Jonathan wilds and what did he say to you so he apologized for the way the news had been delivered he's very sincere in his apology he went on to say that it was his choice to let patients know his patients know that they had hepatitis C and that other clinics and other trusts were not telling their patients because they had nothing to offer them in the way of treatment and he went on to say that he didn't have anything to offer but there was a hope that there might be something available in the future as soon as there was he would let me know and you've recorded in your statement that he said that he felt compelled to share the information with patients he felt it was important that his patients that a new patient should know the conditions that they were suffering from in order that they could make either arrangements or changes in their lifestyle accordingly you received a letter following up from that discussion with Jonathon world we're just going to look at it it's zero three five seven double zero to please and we can see the letter in the middle saying we're currently reviewing all our patients who've received coagulation factor concentrates in the past to see whether they have evidence of chronic inflammation of the liver caused by the hepatitis C virus it's well recognized that prides a heat treatment of concentrates hepatitis C virus was very readily transmitted in factor concentrates in some individuals the virus settles in the liver and causes chronic inflammation it's recently been showing that the drug interferon that can eradicate the virus in some people and then it goes on at the end to indicate we're setting up a joint clinic with the liver doctors so we can discuss hepatitis C infection with you further and with your agreement take the opportunity to perform the new blood tests to establish the situation for you the new blood test is that referred to the last sentence of the first paragraph it is apology so yes exactly you attended for that blood test and you were confirmed to be PCR positive yes you didn't start treatment at that point but treatment came later my recollection is that it was still very much a trial so it was a fight to get on that trial my viral load at the time indicated that I the trial would potentially not be successful and obviously the trial was expensive so there was a struggle to get to me on that trial with interferon but it around this time you decided to resign from the cadet force that you'd been part of apologies sorry your statement can you tell us and when you did resign from it with it after treatment once I'd move back to Sussex in early 2000 I believed 2002 2003 springs to mind I'd have to apply my resignation letter so we'll come we'll come back to that but in 1996 you became unwell and then did start treatment and you went on interferon and ribavirin yes what was that like not enjoyable at all the ribavirin was supposed to attenuate some of the side effects of the interferon not to successfully the main side effects of paranoia mood swings violent mood swings you know it's going to happen but there is absolutely nothing you can do about it additionally night sweats increased flu-like symptoms it's not a nice process at all by then you were married and you've said you were surprised that your wife put up with you at that point my my then wife had previously been out with a hemophiliac who tragically died so she was aware of some of the things with haemophilia but we had the discussion before we married after my diagnosis we had a further discussion and at all stages up to the point where she got married I said to her if you want to back out of this I will understand entirely and she chose not to you've described in your statement that you were a very difficult person to live with during that time I didn't like living with me and I can't imagine that anybody else would have found it in any way an enjoyable experience you continued to work during the treatment yes but a senior manager at work tried to remove you my immediate line manager had noticed difficulties and I had mentioned to him what was going on and he was extremely sympathetic I was then approached by the clerk to this senior manager and the clerk said that this senior manager wished to interview me he then went on we had worked together this Clarke and I and he went on to say a warning more than anything else that he felt that she intended to use the interview as a means of dismissing me perhaps start the process of dismissal so forewarned I went into the interview a statement had been prepared for me and the interview was along the lines of that I must know that my performance was not of a standard that was acceptable and that therefore I should sign this witness statement to that effect and that would then be the mainstay of the dismissal process I declined to sign that statement I felt it was inequitable and unfair and incorrect this senior manager wasn't particularly happy about that but it was very little that she could do about it at that point and then what happened in relation to work my line manager suggested that the health the occupational health nurse who was due to visit anyway should speak to me I spoke to the occupational health nurse she was most sympathetic and she said don't pack up what you've got before you desk and go hi what do you mean she said going home she said we'll take it from here so you will be paid sick for minimum six months you said if I call organizing it over a year during that period of time we'll refer all of this at the bank doctor he may wish to see he may not and a decision will be taken and they bank doctor was most sympathetic he phoned me up and said that there's no need to drag you all the way down to London if you're happy for me to speak to your medical team he said I'll do that and I'll keep in contact with you you know the decision was and the decision was very favorable that waste was a fantastic employer it was a case of no no we understand entirely most unfortunate set of circumstances we'd like you to retire early through our health will increase your service from 14 years to 20 years for pension purposes you may draw down your pension immediately and while she continued to live you will have full staff benefits and I did take the precaution of showing this offer to the Union and the Union said its best offer we've ever seen you should rip their arm off at the shoulder so I'm very very grateful to both the bank's doctor and the senior management at that waist in terms of that first round of treatment it was unsuccessful yes how were you told about that essentially was a phone call saying been unsuccessful they were they were taking me off the trial so that was it a little bit of hope disappeared and what was your health like when you finished our treatment um I think anybody who's had to resort to see it's it's it is it is described as flu-like symptoms severe malaise you don't want to do anything you'd much rather stay in bed you can have brief bursts of activity but it's a general deterioration in both physical health and consequently mental health I certainly became extremely allergic tendency to become melancholy or depressed and uncommunicative and in 2001 your marriage broke down yes partly because of the strain of her working all day you being retired and all the mental effects that you were suffering from I you know I understand entirely it must be extremely difficult to work all day to support somebody who initially you've got married we're going to support each other to leave the house with this person still in bed being miserable I come home perhaps to find them in the armchair sat in front of the TV having done nothing all day in the way of housework contributing to the household so I was offering absolutely nothing and yeah it's it took its toll and I do not blame her and hopefully she didn't meet him enjoy that one sadness from that time is the fact you've never had children the period of time this happened was was absolutely the sweet spot for most couples to start a family and that didn't happen for us which is possibly fortunate the the difficulties with being ill and also the the awareness that I might not be around to father any children for very long would very much in the forefront of both of our minds and you've described that between 2003 and 2005 he became very insular yes do you want to tell us anything else about that period in your life it's the slippery slope is is one that you don't perceive at all when you're at the top of it it's only really when you're when and truly going down that slope and you start to realize that having had quite an active social life various hobbies and activities friends parties meals etc etc it just dawns on you that suddenly through no fault of anybody else's but your own you're sitting there on your own hoping that nobody comes on knocks on the front door not answering the phone and just building a wall that's how I've described it and hoping to hide behind that wall until it all goes away always all over and one of the activities withdrawn from was the cadet force yes what I had I admit why did you stop doing that it was an activity I'd got so much out of Cadets as a young lad I wanted to pay that debt back and I continued to try and do so until I realized that I really wasn't doing the things that I should be doing now no longer physically capable capable of doing those things so with much regrets I offered my resignation I thought it was no longer fair to the young people I couldn't do what I was supposed to do in 2005 you went with some friends down to watch the 24 hour man ah did and on the second day you became unwell I usual flu-like symptoms on the way down I drove my car on the way down there and the we would go down some days before the race started set up camp saying gods marquee tent loss of individual sleep in tents and we went to collect some fire words and I was feeling more and more unwell letting other people do most of the donkey work and then I just took to my bed and that was it I never did get to see any the race I heard it I didn't get the see any of the racing and I was doing more and more pain not entirely sure where it was just about all over and say once we would you to come home I was not in a fit state to drive so I said to my friend flake you're gonna have to drive home and it was an agonizing trip home for me and shortly after we got back I realized that things were not getting better so the next thing was an ambulance trip from my house to sin sources and then subsequently you were moved from San Thomas's up to Addenbrooke's my recollection is there was some dispute is that wrong wrong term my mother wanted me to go to Addenbrooke's I'd already been to Addenbrooke's for my assessment prior to transplant and my mother felt that this was I needed to be in an Brooks and Thomas's didn't think I was stable enough to transfer but eventually the point came when both hospitals agreed that that was the way forward and say it was an analyst trip from San Thomas's to Hadden Brooks in the meantime my reaction to the painkillers many morphine was that I'd become delusional I think certainly I was having some very spectacular hallucinations I've got I have got some relatively clear memories at that time but they are pretty haphazard and looking back sometimes you're not entirely sure what was really going on and what were the hallucinations and the paranoia that you certainly I do know that I'd had already had the diagnosis of hepatic and Kevin itis and say that we've contributed to it that's also large amounts of morphine you stabilized and we're allowed to go back to your parents house hasn't Brooks got me stable and they said look you can wait here for a liver but it's probably going to be better for you if you're in a more familiar and friendly environment so I went bank to rather than going back to my house because I wasn't fit to look after myself I went to wait at my parents house and mainly bedridden and you were waiting for a call to say there was a suitable liver yes the process had been explained to me quite clearly that when a suitable liver I was very close to the top of the list of this stage and as soon as a suitable liver for those who don't know it's um it's a blood type for liver transplant so Suzanne o-positive liver became available they could give me a call and I would give himself up to Addenbrooke's what Dad would drive me out to and Brooks and then we'd go through the pre operation process in preparation for liver that's indeed what happened we got a phone call we did get told to treat as a dry run because they weren't certain whether that liver would be in a fit state transplant by the time we got the liver and me together Abner hadn't Brooks I don't recall being told where the liver was coming from but they did say it wasn't from in how it wasn't sourced in the house I got to the hospital and they said that it time-wise it's it's still within the timeframe so we're gonna go for it with your consent at that stage so my case you can sentence the only choice you've got so prepared for the operation try to get a little bit's think well they did do their work went down pre-meds lights out and the next thing I knew I was coming round into the copy room and initially it seemed like everything had gone fairly well but after 48 hours you deteriorated initial sense of absolutely foria I'm alive all he's good and that was pretty much my I was very weak it's a huge operation to surgeon some of their hands inside you one I'm doing the removal one putting the other one back in and I wasn't really aware of anything other than the faces of the medical team looking more somber than I would expect and eventually was explained to me that although the never had gone in nice and pink and healthy it hadn't started to do its job so that's why we're still good it wasn't dead he wasn't being rejected it just was not working and consequently the only course of action was another liver transplant and that they hoped that another suitable liver would be available in time and there was one particular Saturday afternoon when it was very sullen so initially I was I was quite well but I started to deteriorate and I ended up on the high dependency unit Addenbrooke's and an awful lot of pain I was I was not healing so as fast as they were trying to get units of blood in me it was leaking out from all over the place basically and I'd been in and out of consciousness and it was Saturday afternoon and I remember so we're coming to and seeing a lot of familiar faces but the one thing that struck me it was in amongst those familiar faces was the hospital Padre and none of those faces looked particularly cheerful steps in to unconsciousness and on Sunday morning remember sort of coming to and croaking at the nursing staff and they all looked very surprised to see me no breakfast had been ordered for me and subsequently the medical team did so they had not expected me to make that Sunday you had a second transplant indeed at the beginning of December 2005 what can you tell us about that I was incredibly weak by that stage it was very touch and gos whether it was a waste of everybody's time but we did go ahead with it and that liver had actually been sourced in-house so hanburger very confident that it would be when we were down to me physically whether I could cope with it or not we have written and Here I am so I came to after the second operation actually in truth I came to during that operation I was in such a weakened state that the initiatives had tried to use the minimum amount of anesthesia and unfortunately I had slipped back into consciousness during the operation it had been noted I was subsequently asked whether I was aware of it yes I was aware of it and that continues to give you nightmares I had some very very bad nightmares at the time and yes it's it's still somewhere that unfortunately your mind takes you back to these places when you least expect it and certainly you don't want it you were very weak after the second transplant when I when I went into hospital first of all I weighed 22 23 stone when I finally left hospital in February 2006 I weighed just over 11 stone physically I got a point where I could do nothing for myself whatsoever to pick up a plastic cup half full of water was almost all I could manage so it really did take his toll on me I had become institutionalized I was not getting any better I was not getting any worse and although I did not fulfil the criteria to to leave hospital it was felt that the only way I would make any form of recovery will be back in again a familiar environment and not staring at the same walls had been for several months he's saying you state need become a difficult and uncooperative patient yes I've had counseling for this I still haven't quite forgiven myself for it I'd have plenty of spells in hospital and had remained cheerful and cooperative on this occasion I wasn't able to do so I recognized that my behavior was certainly not what I would hope for myself although obviously the nursing staff were very understanding and when I substitute apologize they said there was absolutely no needs but it's still something which does not sit well with me and you've said you'll say me logically you understand that anyone else in the position will have been exactly the same I would forgive anybody else but I struggled to forgive myself you were discharged back to your parents house and you say that the initial delight of being discharged soon faded I hadn't smelled fresh air for while since the middle of October to the middle of February so I remember being wheeled out because of one cable walking I remember being wheeled out into the ambulance and that just brief smell of fresh air was quite euphoric again that got me home from parents house and lifted me in and a combination of things so obviously my parents had other things to do so I didn't have the nursing staff at beckon call as I had done before and it was a long and painful process to get back to a state where I could look after myself it took three months before you could walk again yes and it took until August 2006 heat when you managed to find your car keys and drive it a year before you could function independently certainly my mother would she really didn't want me to go and living way on again but it was important for me to do that but I would have regular visits and she'd come around with food and with housekeeping materials and so yeah although I wasn't living on my own it was certainly not unaided while you're in hospital you've been given a lot of opiates and you continue to use fentanyl after you're discharged lovely stuff yes I had been given lozenges fentanyl lozenges and a bit like some of the candy you would have had as a kid sort of a lollipop stick little blob of material on the end quite sweet tasting and you get a very good initial hit from these things are coming various strengths and at one stage I was on the strongest ones by all accounts from other people I've become very talkative I mean got the initial hit and it is fenomena addictive but I was not told that at the time I did notice that my use of these laws and shoes I was in pain I did need to use those injuries but my usage accelerated which obviously with the benefit of hindsight is a clear indication that not only was my body becoming tolerant of it but it was starting to want and krei the drug it got to the point where I realized I had a problem with them I had the the phrase I used to choose to use which I have become dependent upon them but in reality that's an addiction I was addicted to them I decided not to keep them in the house because I would just consume them so I kept them my parents house which some six miles away from mine but I had a key so I would sneak over there in the small hours of the morning so help us to three o'clock I'd drive over there help myself to they come in a strip before and sneak off back home and I'd probably demolished two of them on our journey home so my consumption was rapidly accelerating it came to the point where I decided it was an issue as I haven't stopped using them I can't remember how many I was using at the time but in my wisdom I decided to go cold turkey a friend of mine had asked if I'd help him collect a vehicle he purchased an old ex-army fire engine from there's a place called rythms near Grantham on the a1 so I accompanied him and on the way back I was driving sent fire engine it's a lovely warm day coming down the m11 had both doors open on the on the side of it and I started Shiva became very very shivery obviously part of some sort by the time we got back to Plumpton long journey I'd started to experience paranoia I could feel my skin crawling local pub and I was quite convinced all these people I know everybody in there but they were all staring at me they all had some intent I don't I don't know which they I retreated home spent a very uncomfortable night in the following day I rang my mother say I don't know what's going wrong something's on she figured it out she said when's the last time you had some fence and I said Friday it's no Sunday but I hadn't built any and I'd used the stash at her house unbeknownst to her so she found like the farmers who said I can't give you any fentanyl I haven't got any but I have got a patch I'm going to let you have a patch which it'll take a while to kick in that will tide you over until we can get you some lozenges and so that was it straight back on the living juice for another period of time and I did speak to my GP very understanding man but he he said no we've got to step down the analgesia later I wasn't prepared to do that so in the end I mean Cole Turk again I went on holiday with some friends of mine to Spain without any dozen Jews he was at ohrid four or five days more for them than for me I was his mate but I didn't come home and I haven't touched him since but it had taken you three years to be free of the dependency since the second liver transplant you've had regular blood tests for hepatitis C yes and you are undetectable yes and the doctors are puzzled by that puzzle be an understatement yes did you want to say so I had an enormous viral load before my first ever transplant and before my second transplant so the reason I were the case on record of somebody with such a high viral load no longer having any trace of hepatitis C in their system so my name was 2005 the last transplant so er now some nearly 14 years on and breaking lots of six monthly blood tests no sign of hepatitis C to date however the medical team are not willing to give me an assurance and that's the end of it so I still have that sort of Damocles hanging over my head and you've said in your statement that although doctors are keen for you to live as long as possible they're also keen to make lifestyle choices for you what do you mean by that so we have had some discussions I have always been overweight fat and say I stopped attending my annual checkup a couple years ago simply because I was fed up of driving 80 miles to be told you're still overweight he needs to lose weight the conversation regarding my blood work my blood work has been constant for all of that time so I elected not to go anymore and part of that was the discussion around weight but you've also said in your statement you struggled to trust doctors um I am far more cynical skeptical call it where you will now than I used to be so I have no choice I need to trust the NHS and I'm absolutely convinced that every person I deal with is has got my best interests at heart but it is difficult to disassociate what has happened to me with current treatment and another aspect of that has been the question of records going missing and the availability of your medical records yes as we spoke about earlier before your mom passed away she had tried to look for records and she don't apply to the UK HC do at that point I didn't know this but yes she had you you've now discovered that that's what she had done yes and she received some documents from them but there seemed to be some missing and then in August this year your father received a further letter from them providing further records yes out of the blue he said to me said I've had contacts addressed to you mum he said you want me to follow him said yes by all means so he totally unsolicited on our behalf somebody had done others trawl through the records and discovered that they did have some records that they claim they didn't have previous time the original letter which was you say was addressed to your mom it was we've recently become aware of the fact that we have additional information if you want it please email us and your dad followed that answered and we've got the letter in response it's an three 742 double zero three from August 2019 and it says this we're contacting you because you previously requested a copy of the personal information held about your relative at the National hemophilia database following that request we sent you all the information that was held on our electronic database it was assumed at the time that the electronic record was a complete record however on recent inspection of the paper archive we discovered that some details from paper forms submitted to the database in the 70s through to the 90s were archived but not entered into the electronic record these forms were submitted many years ago by your relatives haemophilia center when the database was held in Oxford before paper reporting was phased out in 2000 please see the enclosed additional paperwork that we found on a relative when going through this archived material we apologize unreservedly that you were not sent all the information after your initial request and for any distress or difficulties that may that this may have caused and with that letter you were provided with some further documentation you've also said in your statement that you're now a very different person to who you were in the early 1990s yes can you tell us a little of how you feel you've changed I suppose the initial thing I should say that undoubtedly we all age in change however I think I have changed more than you would expect notwithstanding the the insults both mental and physical I was very curious I was an active member of round table I was involved in the Army Cadet Force I was the chairman of the sports and social club at work and yes my as your time was full of activities involving other people all of those things have been taken away from me so I I have rebuilt a life post transplant and the people i mix with now are very nice people but it does strike me that an awful lot of the activities undertake there are less social and less gregarious than they once were I have a more melancholy person than it once was it's certainly more cynical less trusting yes less full of the hope that I might once have heard you're now engaged to Jan and you've tried to live together with her and her son but you've struggled to cope with that yes we have touched upon am i building the wall well that happened again once I was back on my own so 2006 onwards and so when I first came out of hospital my friends were very pleased to see me lots of social activities were encouraged people come and visit but I obviously made it quite clear that's not what I wanted so those visits became less and less my coming-out became less and less and I find that keeping my own company is what I I don't think prefer is the right word but that's my default method of operation so I very much wanted to share my home and my life with both Jan and Sun but and I was incapable of tolerating they mean my space your dad's also provided us with a statement and he's spoken about the fear and the anxiety that he and particularly your mum had over you through the years and the effect on their mental health do anything particularly bout your mum and the effect I had on her so my attitude on this is I was adopted they had the opportunity to give me back they chose not to do so when I started counseling we touched upon this and I was asked how I felt as an adopted child and I felt cherished and that hasn't changed my parents John and Pat have given me every encouragement and every support and it this is gonna become quite emotional in some respects that that support and encouragement has been repaid by huge amounts of and Satan's anxiety and fear no parent should stand by a hospital bed watching their child essentially dying repeatedly I have no idea the anguish and my mother went through jenos months up a mountain Brook's she fatally moved in to her house up on that Brooks while I was there and nothing was too much effort for her I would not be here without the efforts of both of my parents but in particularly my mother and the only satisfaction on any glimmer of satisfaction I suppose is that she saw me come out of hospital and start to rebuild my life something which I'm sure on more than one occasion she didn't think was going to happen you've mentioned that you've had counseling yes you had to seek that privately I did I wouldn't have done so it was at the insistence of a very good friend and my mother he both said look we know you're going to be into this and I was and I said but gamin give it a go and so I was on benefits the time so it was at a reduced rate but no it did cost me and it was a very useful price I embarked upon it merely out of curiosity to see what the process was but I did find it very useful had you ever been offered counseling by the NHS so we spoke earlier about your earlier retirement due to ill health and you were then reliant on benefits yes you applied for disability living allowance and that was rejected initially yes obviously my wife and I married we were both working for the bank in separate she was in France banking I was in head office Department and we embarked upon our married lives with the assumption that we would both be earning for a period of time and we would look forward to future together that should have been well we liberated I was on a successful career path so it came quite devastating really that suddenly there was I not earning any money career over and it was a struggle the bank were very good so I did draw down my pension early but it was a man being commuted to to settle the liabilities that any young person would have at that time and yeah we were struggling financially and my mother took umbrage at this has anybody met him what imagine and she had made inquiries as to whether there was any support available because she saw that what had happened to both myself and other hemophiliacs was unjust and I do recall that Frank Dobson and then Health Minister stood up in the houses to come and said well you know these people are suffering that we have got a system available that's the benefit system so they should apply for benefits so that's what we did and it was rejected out of hand without some without so much as her by you leave and again my mother waded in and wrote to my local MP Nicholas Soames and the very nice letter from the same saying he would look into the matter and wished me all the best and within a very short period of time I cannot recall exactly how long was received a letter saying oh we reviewed the situation and you are going to receive benefits in full full life so the high rates of disability for life will come to the fore life point just a moment but in between you being rejected it for the Disability Living Allowance and it then being accepted as you say your mom had written to the MP and you'd also received a letter back from your MP in closing a letter from Frank Dobson yes we're just going to have a look at that now at zero three five seven double zero three please Henry and it says this we're not entirely sure of the date but we can see it in the top right corner but it's not entirely clear what it is but the response is this I'm sorry to hear that mrs. Rankin son has haemophilia and has been infected with hepatitis C on the 28th of July last year I announced the decision not to introduce a special payment scheme for people infected in this way ministers do appreciate that they and their families felt deep disappointment at the decision I wrote to the haemophilia society explaining the reasons for this decision and stressing the particularly careful consideration which have been given to all the issues the government's general policy is that compensation or other financial help to patients is only given to patients when the NHS or individuals working in it have been at fault after looking at a number of different approaches to the question of special payments and thinking long and hard about the ACS involved ministers decided that they could not make an exception to that general policy in the case of hemophiliacs infected with hepatitis C the government is funding a project developed by the haemophilia society which aims to meet the advice and information needs of young people with haemophilia who've been infected with hepatitis C I hope that mrs. Rankin and her son will accept that the issues were very difficult in this case and that the most careful consideration was given to them and then it notes that you had then been awarded the Disability Living Allowance what was your mum's thoughts about that response inadequate I think would be an understatement she wasn't satisfied that that was the right decision to be made she was adamant that a mistake had been made and furthermore that once that mistake had been realized that the wrong approach had been taken and the wrong conclusions have been reached and some form of restitution was due you said a moment ago you were awarded the disability allowance 'like disability living answer for life yes what happened when the DLA changed to a hit when the decision was made to switch from DLA to pip I was invited to attend an assessment for pip and I decided that that's not what I want to do I did not wish to go through the embarrassment and ignant of jumping through more hoops for something which I didn't think was right in the first place so I decided no I was not gonna do that you said you decided for your own self esteem they needed to do something yes and what do you now do I very fortunately if I take a step back from him the original prognosis post transplant was that I could expect hopefully between five and seven years of life possibly as little as three depending on how vividly the virus returned about five years ago my clinical team said look there's still no sign of hepatitis C so as things stand at the moment we see no reason why you shouldn't see 75 so the prognosis changed greatly and I felt well although I could sit on the sofa for the rest of my life or watching daytime TV that probably wouldn't be particularly healthy medically mentally so I thought well I best find something to do my skill set was far too had a date to return to ranking and not that I wanted to anyway but have a poisoned chalice these days so what can I do I'm afraid to say that my confidence was non-existent what can I offer and I would think well perhaps driving examiner nice civil service job with a pension at the end of it can't be too difficult but that would have been a full-time job which isn't something I wasn't capable of doing at the time and I'd had a discussion with my next-door neighbor who runs a small driving school and he said well why don't you think about coming to work into me and teaching driving struttin I had been an instructor with the Army Cadet Force so I had a skill set that was transferable there and so yes I've ended up in what I like to call logistics but yes it's various aspects of the logistics industry teaching people to drive undertaking the delivery of drivers CPC of courses etc etc so yes I'm embarked upon a different industry and I've found it most rewarding it has rebuilt my confidence and given me something to do and that work is flexible convenient nearby the house yes which makes it manageable it makes it manageable it means that I can dictate when I'm working but I'm not working and yeah that's something that I find is necessary and you've also received payments from the eiv SS which helps as well yes it does Tony's going to talk about finances I was about to ask you did you have anything else you wanted to say about them when the last year that I worked in full phone at West Bhangra swim in 1996-1997 was retired to real health my income for that year gross was approximately 25,000 pounds so that was 1996 the payments from the IBS is have only just caught up with what I was earning back in 1996 within the bank there was a tearing system and I was ated which means that I was suitable to go into senior management or even executive management if I had stayed working for in that West albeit now it's making Scotland Group assuming a natural progression for that career path I probably would have retired as a senior manager by this age mortgage free and on a full salary pension so the renumeration that I currently receive is considerably less than that that I had anticipated as a result of my career path those are the questions I have for you is there anything else you would like to say and no other than to thank the chair and all of your team this was a process I was not certain that I wanted to be part of like many hemophiliacs of my age we all remembers the tombstone leaflets where suddenly it became necessary to be anonymous and it's something that stays with you that your team have made it if not an easy process a process that has not been difficult so thank you sir Brian and thank you team well you've given us a detailed objective precise account of what what's happened to you concentrating I suspect more upon the the facts and upon your intimate feelings about it that may be a reflection of the the wall that you've described but thank you very much for that it is as all witness evidence is but yours in respects which it's true of yours alone and not of others particularly valuable to this inquiry thank you thank you Sarah [Applause] we will take a break until 10:00 to 3:00 10:00 to 3:00 you