BBC coverage, one year post Penrose – the ‘look-back’ recommendation

SIBF Convener Philip Dolan and Thompsons solicitors highlighted the perceived lack of progress in taking forward the sole recommendation arising from the much maligned Penrose Inquiry and the importance of the look back exercise and carrying out increased testing.

Here we detail coverage from the BBC Radio Scotland Newsdrive programme broadcast on 21st March focusing on the perceived lack of progress on the Penrose Inquiry’s sole recommendation

 

Newscaster’s introduction:

“Lawyers representing some of the victims of the contaminated blood disaster say the only recommendation of the inquiry into the disaster still hasn’t been implemented.

A year ago the Penrose inquiry into how the blood supply became contaminated in the 1970s to 90s recommended that the NHS do more to test those who still don’t know they were infected.

Thompsons solicitors say they have three clients who have been diagnosed in the last year.

The Scottish government says the expert group is considering how best to trace other victims.

 

BBC Health Correspondent Eleanor Bradford’s Piece – ‘Paul’

As we heard in the news, lawyers representing some of the victims of the contaminated NHS blood products say the only recommendation of inquiry into the disaster still hasn’t been implemented.  A year ago the Penrose inquiry into how the blood supply became contaminated in the 70s to 90s recommended that the NHS do more to trace those who still don’t know they are infected.  The Scottish government says progress is being made.  Health correspondent Eleanor Bradford has more.

Paul met me at his lawyer’s office. He wanted his identity hidden. He’s just been diagnosed with hepatitis C.  He now knows it’s been in the system since May 1991 when he had a blood transfusion just before screening came in.

“Hepatitis C comes with a stigma, I’m actually out of work at the moment because of it, because I can’t work, I just physically can’t work, I’ve not got the energy … and the sickness every day … just take that away for a day and I’ll feel pretty good.  But I had everything in life now I’ve got to rely on the government to help me live and it’s not a lot.”

A year ago the £12million Penrose inquiry into contaminated blood came to just one conclusion that a look back exercise should take place to trace people at risk, that could be anyone who had a blood transfusion before September 1991.

Thompsons solicitors represent many of those who know they were infected but senior solicitor Lindsay Bruce says new cases like Paul are still coming forward.

“We’ve got several going forward, all from accidents and having blood transfusions”

So it seems crazy that you as a firm of solicitors have found three cases and yet as far as you know the NHS hasn’t proactively done anything?

“No, not to my knowledge they’ve not done anything pro-active, certainly the feedback from the clients is that they feel out on a limb”.

Last week the Scottish government led the UK in announcing increased support payments to victims of the disaster. Health Secretary Shona Robison says the Scottish government is also leading the way and a look back exercise, with statistical modelling underway and review group which is due to come up with a plan in the summer:

“There have been attempts in the past to try and chase people and get people to come forward but Prof Goldberg is looking at what more we can do to meet that recommendation from Penrose.”

However hepatitis C causes more damage the longer it’s undiagnosed. The virus has been Paul’s body so long he has cirrhosis of the liver. He says higher support payments mean nothing:

“I don’t think there’s ever enough money if they don’t cure. I just couldn’t tell anybody, people are asking questions ‘why are you not at work?’ … I’ve just got to tell lies”

Paul’s been offered no counselling.  He’s got to wait at least two months to see a specialist. He says his lawyer has given him more information about hepatitis C than the NHS.  How many other ‘Paul’s’ are out there is still unclear, it could be as many as 200 who don’t yet know they’re the last victims of the worst disaster NHS has ever known.”

 

Interview with Patrick McGuire of Thompsons Solicitors

“Lawyers representing some of the victims of contaminated blood between 1970 and 1991 say the only recommendation of the report into the disaster still hasn’t been implemented.  The Penrose inquiry recommended that more should be done to trace further potential victims.

Patrick McGuire is senior partner of Thompsons solicitors who represent the majority of those infected. What is your view of what’s going on here then I mean the Penrose inquiry was, what, a year ago?

PM: Yes, we’re just coming up to the first anniversary, the first thing I’d like to say is that nobody and especially me doubts in any way the compassion or commitment of either the Health Minister or the First Minister or anyone else in the Scottish

Government in relation to the plight of the victims of what’s been described correctly as the largest scandal in the NHS.  I however can only deal with the facts as I see them and they are currently as this:  Firstly the Scottish Government spent a huge amount of money on a public inquiry and we had some of the best legal minds in the country looking into this. they spent a huge amount of time during that process looking at statistics and modelling,

There was an entire chapter, secondly, and the public report that dealt with the look-back issue and concluded that not enough and yet been done.

We know thirdly that this is a progressive disease, it’s one where literally each passing month means the condition gets worse and makes it less amenable to treatment

And fourthly as a matter of clear fact, in the last year my firm have been approached by three people who have been diagnosed only during the last 12 months and who may and certainly look/want to have been caught by the look-back exercise if it had happened before now.

There’s nothing that I’ve seen from the Scottish government yet in relation to what they plan to do, so the facts seem to speak for themselves.

BBC: What is your own feeling as to how many people might still be out there in Scotland not knowing they have an incredibly serious disease?

PM: Well it is an incredibly serious disease, again I rely on the great legal mind that was involved in the public inquiry: Lord Penrose concluded that there is potentially as much as 800 people who could be out there as yet undiagnosed and that if anything has to be a priority for the NHS, that is the single most important priority I think that it currently has.

BBC: Obviously it’s very important for them to be traced for the treatment for their own health, but presumably also there’s a health implication for other people too?

PM: Well there is the risk of secondary contamination and that is extremely important but looking at the individual victims themselves, as I said, this is a progressive illness that can get worse with the passage of time and therefore the quicker the medical intervention the more likely it is that they are more likely to be sufficiently treated.  There’s no cure and that’s a terrible tragedy but with modern medicine, if caught quickly enough, there is a means by which people can receive reasonable and appropriate treatment that can let them go on with our lives. However if it’s left too long the implications can be incredibly serious, into conditions such as cirrhosis of the liver and indeed even cancer.  People still die of this condition and the longer it is taken for diagnosis the more likely that is.

BBC: We are hoping to speak to the Health Secretary on the programme this afternoon but we do have a statement from the Scottish Government and they’re saying the Penrose  recommendation and ‘look-back’ is being fully implemented, good progress is being made and any claims to the contrary are simply wrong.  In your view, what can be done to try and track these people, I mean is there traceability in the system somewhere?

PM: I’m no expert I can only go on what seems logical to me. The people firstly received transfusions through the NHS and that’s where we have to start. This may seem a ludicrous suggestion but there even simply could be a large, clear public-health announcement, a press and media campaign simply asking that anyone, because that’s really what it comes down to, anyone who received a transfusion through the NHS before 1991 come forward and receive treatment.  That may be daft but it seems logical to me. There’s going to be other ways as well. The Minister’s entitled to her own view. I’m simply going with the facts as they have appeared to me and they do as I’ve said seem to speak for themselves.

BBC: I suppose anyone who does have concerns can fairly easily get this checked out in NHS.

PM: If there is any message today it’s that if there’s anyone who has any concern whatsoever please go to your doctors and please receive the test.

 

Interview with SIBF’s

Philip Dolan

“Lawyers representing people infected with HIV and hepatitis C through contaminated blood products in the 1970s through to the early 1990s say the only recommendation of the Penrose Inquiry hasn’t been implemented a year since its publication.  The report said more should be done to find and test other potential victims.

Well Philip Dolan, Convener of the Scottish Infected Blood   Forum, is with us. What do you think of this, do you think an awful lot more could be done to try to trace these people?

PD: I think there is a need for that, but it goes way further back, somewhere in the 80s there was a recommendation made at that time to trace people and I don’t think that ever happened.  Lord Ross in 2002 in his findings in the expert group, which I was a member of, he recommended a look-back along with other things and it certainly hasn’t been visible in access at present.  The government set up a review group on look-back with Professor Goldberg, I’m a member of that so I can’t speak on behalf of that Group but I can make my own views from patients and people infected.

BBC: Yes, the government says this review is underway but I guess that people are wanting to see is action because with every month that passes people’s condition gets worse.

PD: That’s correct it certainly true that the committee has only met once in the last five or six months and I think there is one further meeting due to take

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place I understand probably in May.  My understanding was they had difficulty getting hold of some key people to be a member of the group but that doesn’t help the people who needed traced. Even just today I had somebody who had got a blood transfusion way back, and they were on trying to get information, and there are a few people who come forward effectively any time something related to Penrose comes up and people hear it. There are people who got transfusions here in Scotland but have gone to live in England and of course they’re in a dilemma because they no longer are resident in Scotland and that needs to be resolved early in the future.

BBC: Yes and possibly up to 800 people with undiagnosed life-threatening conditions, very worrying, is there an obvious route to try to trace these people, presumably records perhaps weren’t kept as much then?

PD: With the haemophilia population records should have been kept in a sense because they have a lifelong condition so that records should go with the life, but my understanding is that people with blood transfusions, if in fact they’ve had a blood transfusion, let’s say after giving birth, they may not have had any problems until about 10 or 15 years later but by that time their medical records have been apparently destroyed by some hospitals, after eight or 10 years they just ‘disappeared’.

BBC: What‘s your feeling then on the best way to try to track down the remaining people that are still undiagnosed?

PD: …I think that’s the $64 million question.  But I would have thought that greater contact with GPs in Scotland but equally for GPs in Scotland to look back because they should know their patients and try and identify them and at least put them in touch with an appropriate person, but again that’s a matter for the ethics of the medical profession to determine.

BBC: Presumably the advice might be to anybody who had a blood transfusion during these decades to get himself tested?

PD: That’s correct and I understand that when Penrose came out at first there was a big number of people who did go to GPs etc., and my understanding, although I can’t say for  definite, is that many hundreds of people did make contract  but of those who were tested, very few were shown to have hepatitis C.

BBC: Right, but so the remaining people are still out there and if anybody is worried presumably your advice is to go and see their  GP and make sure that they do get themselves checked out?

PD: Yes and equally the folk who maybe south of the border now, I think although they haven’t resolved how they’re going to deal with those ones because the recommendations for making a financial arrangement applies to those people living in Scotland, but there must be a need for those     people who have left Scotland…

BBC: … who were infected in Scotland…

PD: …Yes, because they certainly will not be seen, as if  England get round to do something then they will not be wanted, England won’t want them, so they’ll be in ‘no man’s land’.