Hepatitis C (Haemophiliacs)

Jim Dobbin Excerpts

Tuesday 29th October 2013 Westminster Hall

[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.

--- Later in debate ---

[Sir Nick Harvey]

The hon. Gentleman makes an interesting point, and there will be anxiety on that front in many quarters. We have to hope desperately that what he is suggesting does not come to pass, because we are going to have to learn the lessons of the past. It is essential that we have proper controls over this sector for the future.

A number of hon. Members have referred to the means by which support is given to the sufferers and their families, and some good points have been made about the two-stage process effectively being a two-tier system. There were also some very sensible suggestions about Atos and the all-work test, because the fact of the matter is that the current system of financial support is patchy and insufficient. The Government need to revisit the issue urgently.

The challenge is partly for the new Health Minister, my hon. Friend the Member for Battersea (Jane Ellison), whom I welcome to her post, but it is also a matter for the Department for Work and Pensions. It must recognise the unique circumstances of this community as a whole and come up with a comprehensive settlement once and for all, so that the victims, the widows and the families affected by the tragedy can get on with the rest of their lives.

I agree very much with those who have paid tribute to the current Prime Minister for having been willing to go into events of the past. He has not always been universally praised for doing so, but he has gone and tangled with some tricky issues from the past. This is another such case and he would be well advised to do the same with it. We have to learn lessons from these tragic events, put things right now and ensure that nothing similar can happen again.

[Jim Dobbin (in the Chair)]

We have two speakers left and approximately 15 minutes for them both.

--- Later in debate ---

[Nadhim Zahawi (Stratford-on-Avon) (Con)]

I am grateful for this opportunity, and I congratulate the right hon. Member for Wythenshawe and Sale East (Paul Goggins) on securing this important debate. I know that many colleagues feel passionately about the issue. Indeed, one can feel little else when one realises what a long and painful shadow has been cast on the haemophiliac community. They are people who put their faith in a system that has let them down.

I welcome the points raised by other right hon. and hon. Members on the anomalies in financial support for those who contracted hepatitis C. Indeed, those issues have affected one of my own constituents, Mr Dennis, who was infected with hepatitis C in the 1980s and has since been diagnosed with polyarthritis and, most recently, with liver cancer. He has raised with me on a number of occasions the lack of additional support for those with tertiary conditions such as polyarthritis, as well as his difficulty in obtaining disability benefits, for which previous assessments have been based on his mobility rather than his ability to care for himself and to undertake everyday tasks. Although polyarthritis affects only some 4% of chronic hepatitis C sufferers, it has had a huge impact on Mr Dennis’s quality of life.

There is another group that warrants significant attention, however: those who contracted HIV through their NHS treatment. When we talk about financial support mechanisms, we should learn from their experience of the Macfarlane Trust, which sadly, is not a tale of best practice. One person said that the trust

“neither cares nor understands what we have been, or are, going through”.

Another said that the trust is:

“No longer fit for purpose”.

A third person said that the trust is:

“An embarrassment to the government that funds it”.

Those are just a selection of the damning descriptions of the Macfarlane Trust that I have received from both beneficiaries and, significantly, trustees. I know that Health Ministers have tried hard to regain the trust of the haemophilia community, but the sad fact is that their efforts are constantly undermined by the failings of the Macfarlane Trust.

We cannot turn the clock back and undo the damage done, nor can we pretend that we can wholly make up for the years of distress. However, we can, and must, ensure that the support provided by the Government is not administered in a way that serves as a further source of anger, upset and frustration. Yet I hear time and time again that that is the daily frustrating experience of many beneficiaries. The experience is that policies are created ad hoc with little continuity or clarity, that intrusive and personal details are demanded in response to the simplest of requests and that the attitude towards beneficiaries is one of arrogance. Beneficiaries feel at best confused, and at worst bullied, by the very organisation created to support them.

In preparing for this debate, I have spoken to two previous trustees, who both suggested that the management of the trust was completely out of tune with the needs of beneficiaries. They described an organisation that was completely unwilling to make the case for further funding from the Department of Health and that dismissed complaints without due care and attention. Although I recognise that the trust is independent of the Department, the Minister must recognise the harm that is being done and, in turn, how that reflects on her Government.

I know many of those concerns were raised with the Minister’s predecessor, my hon. Friend the Member for Broxtowe (Anna Soubry), during the recent AGM of the all-party group on haemophilia and contaminated blood, and I therefore hope that the Minister will continue with the internal review that I understand was subsequently initiated, and that she will agree to meet with representatives from across the community. The community do not want to be perceived as victims forced to go “cap in hand” to beg for support.

Clare Walton, another of my constituents, says:

“I want to be empowered, and have autonomy over my own life, rather than continue with this victim culture through charity.”

The sobering reality is that the Government cannot afford to wait another 20 years. The people who need support are dying in ever increasing numbers.

As my hon. Friend the Member for North East Bedfordshire (Alistair Burt) rightly commented, the Prime Minister has an outstanding record of seeking to address historical wrongs. Personally, I cannot think of a better time to address

“the worst treatment disaster in the history of the NHS.”

[Jim Dobbin (in the Chair)]

I thank all hon. Members who have taken part for their time discipline in this extremely important debate.