Ctrl.Alt.Shift blogger Carol Grayson looks back on the "worst medical treatment disaster in NHS history" and the proposed legislation that aims to end medical cover-ups and denials...

"To err is human, to cover-up is unforgiveable" Liam Donaldson

Unable to sleep due to chronic insomnia since my husband died, I flicked through the TV channels and by chance hit on a parliamentary debate in Westminster Hall (1 December 2010) entitled 'Candour in healthcare'. I immediately perked up and decided to watch as my husband and brother-in-law were among 4,700 haemophiliac victims of the “worst medical treatment disaster in the history of the NHS”, having been contaminated with HIV and hepatitis C through NHS blood products.

The history of this scandal includes a massive cover-up by successive governments on this issue. This involved withholding key evidence which would have exposed negligence, patients’ medical records suddenly disappearing, the shredding of the ministerial files of former Health Minister David Owen and repeatedly lying to patients. Therefore I had the debate down immediately as a “must see” programme.

Patients and bereaved families are currently involved in ongoing talks with Anne Milton, Parliamentary Under Secretary of State for Health regarding long overdue compensation payouts. Campaigners have fought long and hard for the implication of the recommendations of the Archer Inquiry (a privately funded inquiry), which includes compensation on a parity with haemophiliacs in Ireland. (On average Irish haemophiliacs received around 10 times the amount of those in the UK).

Haemophiliacs lives have been devastated with loss of health, (chronic illness and death) loss of relationships through stigma and fear, loss of employment, pensions and insurance, not having children for fear of passing on infections and wives and partners having to give up their own careers to become long term carers.

Their lives have been affected in almost every conceivable way. The Westminster debate was initiated to discuss what happens when things go wrong in health care settings. The charity Action Against Medical Accidents have called for the introduction of a statutory “duty of candour” to inform patients and their families when mistakes occur. Download their press release (PDF) to read more. 

This would be named Robbie’s law in memory of Robert Powell who died on 17 April 1990 aged just 10. His family have been fighting for justice since that date.

"Probably more by accident than design, the current system tolerates cover-ups and denials"

Robert Syms (Conservative MP, Poole) stated “Put simply, the situation is unacceptable. It comes as a shock to most people, particularly patients and members of the public, to know that health care organisations are in breach of no rules and will face no sanctions if they cover something up or decide not to inform a patient - or, in the case of a fatality, their relatives - that something went wrong during an operation or health care.

"Probably more by accident than design, the current system tolerates cover-ups and denials. People ask how that can happen in a modern, ethical health service, and the vast majority of people would agree that honesty with patients and their relatives is a moral and ethical requirement. There is an abundance of guidance on the issue, and best practice dictates that honesty, or being open, is the only course of action.”

It might have been a good start then if victims of the biggest NHS health catastrophe had actually been informed of this debate so they could contribute to providing information and evidence via their MPs. Incredibly the haemophilia disaster did not get one mention, this just adds insult to injury.

It is particularly galling as some of the families including myself wrote of our experiences of “adverse clinical outcomes” way back in 1991 which formed part of a government report from Professor Liam Donaldson in 2003 (NHS staff should inform patients of negligent acts BMJ 2003;327:7 (Published 3 July 2003).

To quote Liam Donaldson “to err is human, to cover up in unforgiveable”. Whistleblowers are now encouraged to come forward and it was suggested with a duty of candour that there be an “exemption from disciplinary action for those reporting adverse events or medical errors -except where there is a criminal offence or where it would not be safe for the professional to continue to treat patients”.

There are concerns to be aired with any newly proposed legislation. One is that if this legislation includes financial support to victims, it shouldn’t be viewed as a cheap “get out” clause for avoiding paying out meaningful compensation which must reflect loss and need due to damages. (It would appear that legal aid is to be withdrawn from future medical negligence cases which previously provided patients with an avenue for redress, this is a worrying development.)

Also, as well as looking at mistakes in the hospital and primary care setting, the duty of candour should include the Department of Health itself being held to account for policies that violate safety standards. In the past inadequate and dangerous blood policies led to the importation of blood from US prisons which was known to be contaminated and not fit for purpose.

As Tom Brake (Lib Dem MP for Carshalton and Wallington) pointed out, legislation would improve public confidence and “an apology -as we have probably all experienced -often, first, helps to secure closure for a family if a loved one has been involved in a tragic accident, and, secondly, can defuse a difficult situation that could end up in the courts for years afterwards. This is why a duty of candour is a necessity.”

Government's current stance on redressing the haemophilia disaster...

Aside from this proposed legislation haemophiliacs and their families await an announcement from the Department of Health as to what they intend to do to assist the haemophilia community. A statement may be forthcoming this week. So far signs are not looking good!

Government says...

the DOH don’t want to give compensation on a level with Ireland to haemophiliacs and bereaved families because they are not bound by the actions/ constitution of another country.

Activists say...

The British government has made a mockery of that arguement by agreeing to bail out Ireland with billions of pounds due to the economic mess caused by governments and banks so the government can help those patients and bereaved families it harmed which would cost far less, (around £3 billion)

Government says...

It won’t pay out similar levels as in Ireland because of the financial recession.

Activists say...

The British managed to find the money to pay out those detained in Guantanamo (and rightly so, with one payout to one person estimated at £1million) so don’t give us that excuse. Pay out meaningful compensation to those the government harmed two decades ago, haemophiliac victims and bereaved families are still waiting for justice.

Government says...

The Department of Work and Pensions will not exempt haemophiliacs and their families from being subjected to continual reviews for benefits.

Activists say...

Haemophiliacs and their families were put in the position of having to claim benefits due to NHS harm and should not be constantly harassed, they should be exempted from repeated assessments.

Government says...

It will not allow a statutory haemophilia body to be put in place.

Activists say...

There is currently no appropriate body which fully takes into account the experience and suggestions from haemophiliacs and their families and they wish to be a part of the decision making process regarding their healthcare through a legislative body which has some legal power.

Words and photos: Carol Grayson

Disclaimer: This article has been written by Carol Grayson (from an individual’s perspective), and is not necessarily reflective of Christian Aid/Ctrl.Alt.Shift views.