The following text is the full transcript of Shona Robison MSP’s speech at the SIBF Parliament Evening Reception:
“Well thank you for inviting me here tonight, it’s always difficult to speak after seeing something like that, it’s very powerful. But first of all I’d like to thank Philip Dolan for all the work that he has done, and the Scottish Infected Blood Forum.
As Malcolm said one of the first things that came to my attention really when I was first elected to this place back in 1999, was the campaign being brought to me by people like the late Dave Bissett, and people like Philip and Bill Wright and others who met with us and explained what the issue was and what the campaign was.
And of course Malcolm, as he said already, was involved in the Health and Sport Committee in its very first term looking at this issue, so this was back a long way and our involvement in this issue goes back a long way and a lot has changed, some people would feel not enough has changed and I understand that fully. But some things have changed I think the awareness of this issue, people’s voices being heard and I think the film has given an opportunity for voices to be heard that otherwise might not have and the fact that we are now at the point of being of able to hopefully give some practical support to those who need it most and I’ll come onto that in a second.
But the powerful testimonies that we have heard tonight are very important and not just to those who are aware of the issue, but actually to those who are not and the public out there because there is still a lot of stigma and are still a lot of misunderstanding and ignorance frankly, and I think the more we can hear the voices of those affected … I was also struck when we had the world hepatitis Summit in Glasgow last September, again a very important and powerful world platform to hear the voices of those who have been affected and some of the testimonies from their experiences from other countries has been very horrendous as well and particularly among again some of the misunderstandings and stigma from those countries and again those platforms have been very important again to hear those voices. So I want to pay tribute to the Forum and Philip in particular and of course to the filmmakers, and also from Tommy’s presentation earlier on, again I think giving a platform and a voice to people’s experiences so I think that’s been very important.
The work that the Forum has provided to provide what I suppose is a mutually supportive role for those infected, for people to be able to get an awareness and understanding of their condition and to be able to speak to others in the same situation is a very powerful thing indeed and we’ve been pleased to be able to support the Forum in some of the work that has been done by them. I think it can obviously a very isolating experience and we want to work with the Forum to look at what more we can do to help provide that support to people.
I said that I would come back and talk about some of the practical support. I mean I felt very strongly at the start of this, and I felt all the way through since the early days of the Health Committee, that the issue needed to be recognised and people needed to be supported. Now as Cabinet Secretary for Health I’ve found myself in the position of hopefully being able to go some way to do that.
I’m not going to say a lot about the Penrose Inquiry because I know that there are very strong feelings about that and as I said at the time of the publication, that I recognise the views of people around Penrose, but what it has done, interestingly, we were talking to the Committee yesterday, again was to raise the profile of this issue and actually a lot of people have come forward for testing that may not have otherwise done through the media exposure of this issue and that is a good thing. It’s a good thing for a number of reasons, not least that some of the progress that’s been made around drug therapies has been quite ground breaking, some of the testimonies there talked about side effects of the some of the previous treatments, horrendous side effects, people have said to me actually that the side effects were almost worse in some cases. We now have a new generation of drug therapy which I know for many people has made a huge difference and that’s very important for people who are coming forward potentially to be told of their infection for the first time. We are working with David Goldberg (Professor) and others to look at how we make sure that those who are undiagnosed that we find those people and hopefully offer them the drug treatments that can help them. But coming back to the practical support, I felt it was very important to establish a review group of the financial arrangements. The day of the Penrose Report being published I met with families, those directly affected, and the one thing that was consistently said to me was that the existing schemes were not good, that people were left feeling like they were begging for help, that people needed practical support, that they felt cold and the winter and couldn’t meet their fuel payments and I left that meeting very clear in my mind that no matter what has been said in the Penrose report that there was an opportunity to get some practical effect and improvements made there so that kicked off the work that the of the Review Group that has looked at what can be done and what should be done. Now those recommendations as I’m sure you’re aware, were debated long and hard, there was disagreements, and ultimately a compromise around the recommendations that were put to me and obviously Philip and the Forum have given a different view to me all of which I am considering at the moment.
But we have an opportunity to establish something here in Scotland that can better meet the needs of people here in Scotland, that can have a different culture around the organisation because again people have cited the fact that they felt they had to jump through hoops and made to feel as if they were begging and that’s something I don’t want to have under the Scottish arrangements. So I’m looking at these arrangements at the moment, we want to establish something here in Scotland, but there may have to be some interim arrangements put in place to make sure that we get better financial support into the hands of those who need it most as quickly as possible and we are talking to the UK government and the Skipton and Caxton schemes at the moment about how we could work with them to get some interim arrangements for people here in Scotland while we set up a Scottish scheme. You’ll be aware of course the UK government are also reviewing their schemes anyway, I don’t know where they’re going to end up and that’s obviously for the people in England, I know that we want to make sure that we support people (in Scotland) in a better way. Without being too political about this, I was disappointed that we weren’t able to get enhanced winter fuel payments into the hands of people this last winter, we fought hard in trying to do that because I was struck by what folk were saying that they felt the cold in the winter, and I thought that there’s quite an early thing we could have done if we could have reached agreement across the four nations we could have done something about winter fuel payments. Unfortunately, that required the agreement of the four nations and we couldn’t get that agreement.
However, my priority now is to get something in the interim so we can get money into the hands of people who need it, to establish something in Scotland that can look after the needs of people here in Scotland and as I said at the committee yesterday, one of the important things that the review group have recommended, is that this isn’t the end of the story. They wanted to get as I’ve just said the resources into, more money into the hands of people as quickly as possible, they also said is that that shouldn’t be the end of the story, that there needs to be a look at, for example the other health impacts of people, we know a lot about liver damage but what we don’t know is a lot about some of the other health impacts, we need to understand that more, that needs to be reflected in the support that we give people. We want to look at these stages, there are other countries that have taken an approach to looking at the stages of health needs in a less blunt way than there is just a stage 1 and a stage 2 and we want to look at all of that and the Review Group have recommended very clearly that there is some work that needs to happen in addition to getting more money into the hands of people who need it most.
So, as I say, that’s what I’m looking at the moment. Does it answer all the questions? Does it give people the justice that folk are looking for? No of course it doesn’t and when I stood up and given apology on behalf of the Scottish government and the NHS, as did the first Minister, for something that obviously predated devolution but nevertheless I felt it was important that we said those words and give recognition to what has happened and the impact on people that we saw here on the film tonight, that it was important to say that and actually a lot of people have said to me that out of everything that’s maybe been one of the most important things that they’ve heard that there has been recognition of the harm that has been done.
My job now is to make some of the practical changes that can really help people and their day-to-day lives to give them some of that comfort and also to think about their families and widows and again I was very struck that the Review Group felt very strongly about that and the recommendations that they’ve given me.
So I’m going to be looking at those very carefully, as I’ve said I will be making an announcement about that before we break for Purdah for the election so before March but as you’ll be aware I want to give careful consideration to that and want to do as well as we can by the people here in Scotland and I give you that commitment and thanks again Philip for giving me the opportunity to share some of my thoughts tonight.
Thank you very much.”