Jane Ellison – 2016 Speech on Infected Blood

janeellison

Below is the text of the speech made by Jane Ellison, the Parliamentary Under Secretary of State for Public Health, on 21 January 2016.

In the urgent question on 16 December I committed to publishing the consultation on infected blood scheme reform in January. I am therefore pleased to be here today to announce the launch of that consultation.

I recognise that for some this will come too late, Mr Speaker, I can’t right the pain and distress of 30 years and the truth is that no amount of money could ever make up for the impact this tragedy has had on people’s lives.

For legal reasons, I should be clear that, in the majority of cases, it is not appropriate to talk about compensation payments. I have made that point before. But Mr Deputy Speaker, I would like to echo what has been said before in this House and say sorry on behalf of the government to every person affected by this tragedy.

Scheme reform is a priority for me and for this government, and for this reason I can announce today that the Department of Health has identified £100 million from its budget for the proposals set out in the consultation. This is in addition to the current spend and the £25 million already announced in March 2015. This will more than double our annual spend on the scheme over the next 5 years. This is significantly more than any previous government has been able to provide for those affected by this tragedy.

I know all too well of the ill health and other impacts on many of those affected by the tragedy of infected blood. I have corresponded with many of those affected, and their MPs; they each have their own story to tell. I have reflected carefully on all of this in developing the principles upon which the consultation is based.

These are that:

– we focus on those who are infected

– we are able to respond to new advances in medicine

– we provide choice where possible

– we maintain annual payments to everyone currently receiving them

This consultation is an opportunity for all those who have been affected to have their say, and it’s really important this extends to those quieter voices who we hear from less often.

It would not be appropriate for me, nor will I have the time Mr Deputy Speaker, to go through the whole consultation document today but I would like to highlight some of the key components.

The infected

There is a large population within the infected blood community who currently do not receive any regular financial support, these are the people with hepatitis C. I believe it is important that everybody receives support from the new scheme, and that this is linked to the impact that infection has on their health.

I therefore propose that all those registered with the schemes with hepatitis C at current stage 1 would be offered an individual health based assessment. Completion of this assessment would determine the level of annual payment received. This would also apply to anyone who newly joins the scheme.

The consultation document outlines our proposal that those who are currently receiving annual support would have their payments uplifted to £15,000 a year. Those who are co-infected and currently receive double payments would continue to do so.

Mr Deputy Speaker, I often hear that people are unhappy about applying for discretionary charitable payments and it is my hope that the introduction of new regular annual payments will remove this requirement. I am keen that those who respond to the consultation take the opportunity to answer all the questions about the support proposed for the infected so that I can make informed final decisions on the shape of a new scheme once all the responses are collected and analysed.

Treatment

During the urgent question on 16 December I said that I was interested in the opportunities offered by the advent of simpler and more effective treatments that are able to cure some people of hepatitis C. The NHS is at the start of its programme to roll out the new hepatitis C treatments recently approved by NICE. As members of this house will know, the NHS must prioritise treatment on clinical need and not on route of infection. While this will mean that some in the infected blood community will be eligible for treatment right away, others may have to wait.

More than anything I want, if we can, to give the chance to limit the impact of hepatitis C on this affected community. Over recent months I have received many letters from people expressing a wish to halt the progress of their infection. One of many letters that particularly struck me, Mr Deputy Speaker, asked simply: “please make me well.”

So my intention is that through the new scheme we can provide an opportunity to enhance access to treatment, especially for those who fall just short of the current criteria for the NHS. I would hope that we could treat more people if finances allow.

That is why the consultation is seeking views on offering treatment to those with hepatitis C in the infected blood community who will not yet be receiving treatment on the NHS.

The bereaved

In keeping with the principle of offering choice where possible I am pleased to announce that we are consulting on a choice of options for the bereaved.

Currently bereaved partners or spouses are eligible to apply for means tested support from the charities. As I have said I have heard concerns from many people who do not like having to apply to charities. With that in mind the consultation offers the choice of continued access to discretionary support or a one-off lump sum payment for the bereaved, based on a multiple of their current discretionary support.

There are questions on this in the consultation document and I am keen to hear from those affected so that I can understand their preference.

One scheme

Having listened to the concerns about the complex nature of the 5 schemes, the consultation proposes that, following reform, there will be one scheme run by a single body. That body will have access to expert advice including from NICE, so that we can keep pace with any new advances in treatment, for hepatitis C and HIV which emerge.

Next steps

The consultation published today will run until 15 April. This is a 12-week consultation to ensure that all those who wish to respond have time to do so. Those who read the consultation document will see that there a number of questions on the proposals on which I would welcome views.

I recognise that there has been disappointment that we have not consulted sooner. The outcome of the consultation will be crucial to inform our final decisions about how to proceed and I give the house, and those affected, my commitment that we will proceed as rapidly as possible to implementation thereafter.

We need, as a priority, to make progress in rolling out the health assessments as quickly as possible; ensuring people get access to the support and clinical advice they need. However, I should be clear that my intention is that annual payments for the current stage 1 cohort be backdated to April 2016 regardless of when each individual’s assessment takes place.

This is the first time that government is consulting fully and widely with the entire affected community, and all those who may have an interest, on the future reform of the scheme. In developing proposals to include within the consultation I have taken account of points I have heard during debates in the house, correspondence sent to me, as well as my discussions with the APPG and views gathered during pre-consultation engagement.

The consultation is now open and it is my hope, Mr Speaker, that all those affected by this tragedy will respond and that we can move forward from here. I commend this statement to the house.