Hepatitis C (Haemophiliacs)

Jim Shannon Excerpts

Tuesday 29th October 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the right hon. Member for Wythenshawe and Sale East (Paul Goggins) on bringing this important matter to the House’s consideration. I will speak specifically on behalf of my constituents, as I think will everyone who speaks today, from a heartfelt understanding of the problems that those constituents have faced for a number of years. My hon. Friend the Member for Upper Bann (David Simpson) illustrated the time scale. If ever there were a powerful case for the Minister to answer, this is one. Many of the speeches made today will be impassioned. I welcome the Under-Secretary of State for Health, the hon. Member for Battersea (Jane Ellison) to her position, and I look forward to working together on many issues in future.

The background to the case is clear. I have spoken to constituents of mine who are victims. Some of my constituents live daily with these illnesses through no fault of their own but rather as a result of the Government’s inaction at a time when action was important. My constituents have sent me a briefing, and I have relied on them for information as well as for the personal details that they have given me, although I do not intend to mention any names out of respect for confidentiality and personal issues.

The Archer inquiry investigated the fact that between the 1970s and late 1980s, 4,670 people with haemophilia were infected with hepatitis C through treatment by the NHS that they loved and respected, which ultimately, unfortunately, let them down. Of those, 1,243 people with haemophilia were also exposed to HIV, as the right hon. Gentleman said. Almost half of those infected with hepatitis C and almost three quarters of those co-infected with HIV have since died and many have tragically left families behind. When looking at the impact on the individuals, we can never forget about the effect on their families; many individuals have experienced poverty and discrimination as a result of their infections. People, either through mistrust or lack of knowledge, sometimes unfairly discriminate against those with infections. The provisions recommended by the Archer inquiry would offer appropriate support and compensation to those affected and would ensure that steps were taken to improve blood safety.

The previous Government argued that the reason why financial support was not made available at comparable levels to those in the Republic of Ireland, for example, was that the disaster affected the two countries differently. I am unsure how that was worked out. Perhaps the disaster was measured in numbers, but the disaster is the same to each individual and each family. No-fault Government payment schemes were established to provide support to those affected. The Archer inquiry, which was non-statutory and funded from private donations, reported in February 2009 on the Government’s response. Among its recommendations was a call for reform of support for those affected in line with the scheme used in the Republic of Ireland. If we had had in Northern Ireland and the rest of the United Kingdom a scheme similar to that of the Republic of Ireland, our constituents would have been much more satisfied. What does the Minister think about the Republic of Ireland’s scheme? Is it possible that we can try to match it?

Despite the Government’s announcing on 10 January 2011 an increase in payments to some of those infected with hepatitis C, what has been put in place is not adequate to support people through their illnesses. The Government’s scheme now has two stages, as outlined by the right hon. Member for Wythenshawe and Sale East. A first stage payment of £20,000 is available to eligible people. Following that, successful recipients of the first stage payment whose hepatitis C infection has led to advanced liver disease can receive a second stage payment of £50,000. Those who have received the second stage payment are also entitled to additional annual payments of £14,000, paid monthly or quarterly. The money may look good and it sounds like a lot of support, but, as always, there is more than meets the eye to the press release. As the saying goes, the devil is in the detail, and that is clearly the case here. The Hepatitis C Trust supplied an interesting briefing and is calling for a rethink of the strategy and policy. The trust, with which I certainly agree, asks that the first and second stage categories be removed. As a constituent of mine said, the payment can never compensate for what has happened, but it can offer support and help people to adjust to and live a life affected by it.

People infected with hepatitis C can experience severe symptoms, including extreme fatigue, depression, aching limbs, headaches and abdominal pains, which may mean that they are unable to work for long periods of time. The right hon. Member for Wythenshawe and Sale East referred to Atos in his speech—I think it was also mentioned in an intervention. The situation of people who are unable to work for long periods of time needs to be understood. Symptoms can lead to difficulties in holding down a job and receiving an income. Sufferers rely on help from family and sometimes from other carers, and the fact that the annual sum starts only when a person’s hepatitis C has caused cirrhosis does not take any of that into account. Understanding the problem is the crux of the issue. The briefing I received from the Hepatitis C Trust put it succinctly:

“Some patients without cirrhosis are far more symptomatic than some who have reached that stage. Indeed, some patients die whilst still in stage 1. Therefore there should be no distinction between stage 1 and stage 2 payments for people who have been infected with hepatitis C through contaminated blood. They should be entitled to the full and on-going support immediately.”

The second point raised in the briefing is that there has been no Government apology to date. The right hon. Member for Wythenshawe and Sale East referred to the Pat Finucane case and the apology that the Prime Minister made, so I urge the Minister to consider an apology for those infected, who have suffered many years of illness as a result. Having listened to some of the apologies, which should never have been uttered, that have rolled off Government Ministers’ tongues to pacify and placate people for political gain, I find it difficult to believe that there has been no Government apology. I have sometimes heard Members of this House and the Prime Minister apologising on my behalf when no apology was needed and yet here, when there clearly was a fault and when innocent people lost their lives following treatment by the NHS, mouths seem to be suddenly closed. I cannot understand that mindset. A mistake was made that has cost lives and has cost other people the price of living with horrific diseases, and if that does not deserve a heartfelt apology then I am at a loss to think what does.

[Mr Gregory Campbell (East Londonderry) (DUP)]

Does my hon. Friend agree that what sufferers and their families need are empathy, an apology, to which he has alluded, and a commitment to ongoing support for the remainder of their days? If they saw that coming from the heart of Government, we would have accomplished a significant amount of what the right hon. Member for Wythenshawe and Sale East (Paul Goggins) and his predecessor have sought to achieve.

[Jim Shannon]

I thank my hon. Friend for that contribution, which refers to something that we would all want to see. I am reminded of what my mother told me as a child: “Compassion is your pain in my heart.” She was referring to an understanding of the problems facing other people, which, in a way, is why we are here. We are here not just because we want to be MPs, but because we are privileged to be elected by our constituents. We see their problems and we must illustrate and expand those problems in this great House, of which we are privileged to be a part.

[Grahame M. Morris (Easington) (Lab)]

I congratulate the right hon. Member for Wythenshawe and Sale East (Paul Goggins) on securing a debate on this important issue.

What are the thoughts of the hon. Member for Strangford (Jim Shannon) on the role of specialist hepatitis C nurses in providing support to sufferers who are haemophiliacs and more generally? The NICE guidelines suggest a minimum of one specialist hepatitis C nurse for every 40 patients in the community and one such nurse for every 20 patients in a hospital setting. Does the hon. Gentleman think that the Government’s plans to transfer resources through the clinical commissioning group allocations will help or hinder the improvement of support for hepatitis C sufferers?

[Jim Shannon]

I thank the hon. Gentleman for helpfully highlighting the role of specialist nurses. I hope that the Minister will be able to give us an indication of the importance of the role of nurses and therefore the importance of retaining them and ensuring that the numbers are correct.

Just a few minutes spent reading the stories of victims and their families on the taintedblood.info website brings a lump to the throat. In this House, where we have the privilege to represent our constituents, we cannot continue to leave the families behind. I wholeheartedly support the removal of the two-tier system, which would entitle people to an annual sum to help them to cope with the side effects of this terrible disease and would take a little pressure off the families who are faced with watching their loved one fade away before their eyes. It is well past time that we do the right thing by those affected, and that will not be done by separating and segregating those infected by the same disease. I urge the Minister to take on board what is said today by the right hon. Member for Wythenshawe and Sale East and others and to do the obvious and right thing by providing the apology and response that we need.

Several hon. Members rose—

[Jim Dobbin (in the Chair)]

Order. I intend to call the shadow Minister at 20 minutes to 11 and five or six hon. Members want to speak, so I ask them to watch the length of their speeches before I have to impose limits.