Hepatitis C (Haemophiliacs)

Debate between Nadhim Zahawi and Jim Dobbin

Tuesday 29th October 2013 Westminster Hall

[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.