I appear on behalf of the Haemophilia Society, a legal Entity that has charitable purpose and represents the community of persons infected and affected by receipt of contaminated blood and blood products, due to their bleeding disorder conditions. Those persons have lived quiet lives of desperation, suffered in silence and have endured the tragic effect of their quiet lives of desperation and decimated futures.
The Society carries a huge burden and has done so for many decades in terms of provision of support to its membership. For many decades it has criticised Government for its paltry, subsistence like subventions that have added insult to injury and have created a fear within its community to take on the might of that Government.
The Government has been anything but empathetic to the consequences that have befallen this very tragic group of people. It should be remembered that a Nation is judged or assessed by the way it treats its most vulnerable citizens at the time of their greatest need.
The Society comprises 5,000 members, it is an organisation that has represented a myriad of interests, most particularly relating to those infected and affected, over the past 33 years. The concept of justice denied is justice delayed, is apposite in the circumstances of this Haemophilia community.
An Inquiry Process ought to have occurred many decades ago, where the consequences associated with the delay of this investigation has resulted in many of those infected or affected, not surviving to see the commencement of this Inquiry and in essence, going to their graves without the knowledge of why their life was cut short and why they suffered to such an extent, in advance of their death.
In addition, the passage of time created additional psychological trauma for those who have survived to see the commencement of this Inquiry Process. Government has provided only subsistence type payments to ensure that persons infected or affected would not have the ability to maintain or advance their own cause in an effective and constructive manner, as those persons were suffering both ill health and lack of financial capacity to so do. Such a scenario has driven a wedge within the Haemophilia community, as conspiracy theories have run amok where there is little or limited basis for some perspectives. Vulnerable citizens have been denied justice, resulting in an inward looking consequence that ought not to have occurred but was in essence, a consequence of the failure of any proper humanitarian response.
Given the limited time frame of only 30 minutes available, a more detailed and comprehensive opening statement will be delivered in written format to the Inquiry Team.
We are now at the end of 2 days of opening statements delivered on behalf of the infected and affected where many of the issues that require to be considered have already been canvassed and the Haemophilia Society endorses and adopts the comments of Haemophilia Scotland, Haemophilia Wales and Haemophilia Northern Ireland as there is one UK Haemophilia community.
I wish to focus on Justice and how the Society will fight for justice for those infected by contaminated blood products, and their families, since the effects of the tragedy came to light as well as working to improve healthcare entitlements, provide support and deliver care to those affected, over many decades. Many of the Trustees of the Society who commenced that work are no longer with us today.
We remember them and their objective of achieving truth.
The Society accepts that it ought to be investigated in relation to the various perceptions or criticisms that exist, in terms of its actions or inactions and it welcomes such scrutiny, as it allows it an opportunity to be open and transparent associated with the events that so occurred.
More than 30 years ago, the Haemophilia Society called upon Government to launch a public enquiry into the infection of those thousands of its members, with contaminated blood in what has been termed the “worst treatment disaster in the history of the NHS” and demanded an immediate humanitarian response by Government. After decades and an unconscionable delay, at least 2,400 people have died and many thousands more who were needlessly exposed to Hepatitis C and HIV, continue to suffer with life changing consequences. Those persons have lived quiet lives of desperation, endured decimated futures and indeed, suffered destruction of life itself. Eventually, Government has finally begun to listen and has established the Infected Blood Inquiry.
It should be remembered the first duty of any Government, in any jurisdiction, is to protect its citizens. If Government fails, in this duty, its secondary duty must be to do all in its power to redress its initial wrong. Yet, in the circumstances of persons infected and affected by receipt of contaminated blood and blood products, Government has consistently looked the other way and refused to acknowledge the true scale of this humanitarian disaster.
It has been complicit in the covering up of an immense human tragedy.
For over 30 years, Government has refused, neglected or omitted to put right its wrong. For that time The Haemophilia Community has had to fight an unnecessary battle, whilst suffering the devastating effects of terminal illnesses that had connotations of ostracization and stigma. Many people died quietly, away from public glare and away from any campaign to achieve justice for themselves and their families. Too many have died not having told even their closest family members due to the great fear in particular that the stigma of HIV infection carried for that family. That stigma was largely created by Government and its rhetoric around AIDS in the 1980s. Unnecessary, unwarranted and inappropriate connotations were propagated for whatever purpose. The after effects and consequences of that stigma continue to affect Society’s members and indeed the Society’s perceptions to this day.
Accordingly, Government, in terms of doing the “right thing”, have maintained their policy of dilatoriness. A legal action was launched in 1990 when matters were due to proceed to Court, Government was encouraged yet again to do “the right thing” by vulnerable members of the Nation i.e. those persons who had suffered the consequences of the worst treatment disaster in the history of the NHS.
Somewhat uniquely, the Judge who was due to hear the case, Mr. Justice Ognall, wrote directly to Government as is referenced in his own memoirs. Also, privately he wrote to the Secretary of State for Health. He set out what might be described as the “moral dimension” in this case “a Government which takes upon itself the role of Public Provider of medical advice and clinical service is in a very different position to any commercial organisation. It is clearly arguable that their duty to innocent citizens who suffer injury under the aegis of such treatment has a moral dimension to it which should distinguish their assessment of their position from the criteria to be adopted by other Defendants of a corporate character.
Government owes a duty wider than to its shareholders and insurers. It should also mean that the Public may be entitled to expect from a Government an appraisal of their position which is not confined solely to legal principles to be found in the Laws of Negligence or problems of proof.” He went on to describe the victims’ plight as “a special one”.
The response to that plea by the U.K. Government of that time is nothing short of shameful.
On 2nd November 1990, the then Prime Minister Margaret Thatcher, responded to a similar type request to that delivered by Mr. Justice Ognall in the following terms “I am sorry if this is a disappointing reply, but the Government is showing its great concern for haemophiliacs with HIV by the ex-gratia payments it is making. The question of compensation has been made a matter for the Courts to decide”.
So, in essence, you take as a community what you are given, and we fight on in the Courts was the response.
Some four months previously, my clients, the Haemophilia Society had received a response from Prime Minister Thatcher in the following terms: -“In the present case, the Government has not accepted that the infection of Haemophiliacs with the AIDS virus – tragic as it is – was the result of negligence; or that we should depart from the view reached by the Pearson Committee when it rejected the arguments with some generous scheme of no fault compensation.
In the meantime, I can assure you that we are doing all we can to help the court action towards an early outcome. If there have been delays from the original timetable that is because of the inherent complexity of the issues and certainly not because of our deliberate attempt on any scale to delay things. I am sorry if this is a disappointing reply.
Persons with Haemophilia were dying as the “complexity of the issues” delayed matters, although there was purportedly no “attempt on any scale to delay things.”
Government abdicated its responsibility to do the “right thing” by The Haemophilia Community and hid behind the concept of litigation to avoid its moral responsibility to appropriately respond to the consequences of HIV infection.
The true response of Government was to take advantage of its vulnerable Citizens who in this instance were members of The Haemophilia Community who at their greatest hour of need were obliged to sign up to a financial system to which every person who was so infected had to commit – a form of moral blackmail. In short, all persons had to agree otherwise there was no agreement. This system paid minimal “subsistence” to those infected and affected and in addition had the beneficial effect from Government’s perspective that its acceptance denied The Haemophilia Community the opportunity to seek fair and equitable compensation. This stroke, and there is no other word, was pulled by Government on its own most vulnerable citizens, at their weakest time.
The Society views such actions as a cruel and a calculated attempt to subjugate its Community into submission. Also, Government insisted that The Haemophilia HIV Community sign away any rights to any further legal action relating to Hepatitis C when the persons so HIV infected knew very little about either the scale of the further Hepatitis C infection or indeed its potential lethal consequences.
Yet again, somewhat sadly, once the magnitude of the Hepatitis C infection became known, Government failed to adequately deal with that tragedy and yet again put in place a form of “subsistence”. Such subsistence is not fair and equitable compensation, nor indeed did Government provide adequately for the needs or requirements of the persons infected or affected.
The consequence of subsistence payments is that persons are placed in a position of vulnerability and need, with the inevitable effect that such persons are made to feel in some way “beholding” for such payments. That is not an appropriate response of a Government who has a humanitarian perspective upon matters but is in essence the response of a Government who seeks to achieve benefit at the expense of its own vulnerable citizens. Once again, the magnitude of the infection with Hepatitis C when it became known, resulted in Government failing persons infected and affected. Government failed to adequately deal with the tragedy and yet again put in place what I can only describe as a paltry form of subsistence. It failed to properly compensate for the devastating consequences visited upon the Community concerned.
Yet again, people died without dignity, without knowing what would become of their family members whose life path had been altered by virtue of the lack of financial resources available to them due to the illness and death of their family member. Also, such persons went to their graves without knowing what had occurred or achieving any semblance of justice.
Another letter, in relation to Hepatitis C, dated 16th May 1996, from the then Prime Minister John Major indicates very clearly the attitude of Government and its perception of its duty to its most vulnerable Citizens who were Hepatitis C infected “the Government has given the question of compensation very careful consideration, including the Irish Scheme. I have great sympathy, but I really do think it is better to spend money provided for healthcare, from whatever source, on treating patients than on payments to people who received the best possible treatment available at the time. I am convinced that the best way we can provide practical help is to encourage research, and best treatment for those infected, as well as supporting voluntary groups directly concerned with their care. We shall continue to support these efforts and explore other ways in which we can provide help.
I am unable to comment on the possibility of any commercial company accepting liability through funding a settlement and I do not think it would be appropriate to explore that.”
“It is, therefore, possible that Haemophiliacs and those suffering from Hepatitis C might be able to benefit from Lottery grants, but this would be a matter for the Board to decide in response to any Applications received.”
In short, the assistance contemplated or considered to be appropriate by UK Government was the prospect of seeking Lottery grant funding to address what has been correctly termed “the worst treatment disaster in the history of the NHS” as Government maintain the “best possible treatment available at the time” had been provided.
More than three decades later, the Government finally offered an apology in The House of Commons. On 25th March 2015, the then Prime Minister David Cameron was asked to “ensure that there is a full apology, transparent publication and, above all, proper compensation for the families terribly affected by this scandal.” The Prime Minister answered, “I can do all of the three things he asked for.” To this date, that particular commitment still remains outstanding. Prime Minister David Cameron indicated that “to each and every one of those people, I would like to say sorry on behalf of the whole Government for something that should not have happened.”
On announcing the establishment of The Infected Blood Inquiry in 2017, Prime Minister Theresa May acknowledged the following “the contaminated blood scandal of the 1970s and 80s is an appalling tragedy should simply never have happened. Thousands of patients expected the world class care our NHS is famous for, but they were failed. At least 2,400 people died, and thousands were exposed to Hepatitis C and HIV, with life changing consequence. The victims and their families who have suffered so much pain and hardship deserve answers as to how this could possibly have happened. As Prime Minister, I am determined to stand up for victims in confronting justice and unfairness in our Society at every turn.”
Whilst many of the infections that have tragically occurred happened over 30 years ago, those infected continue to die and their families affected continue to suffer the consequences. Such families are left in emotional and financial turmoil and continue to be beholden to Government in relation to subsistence type payments. Government’s failure to adequately compensate unlike my own country Ireland, where the situation was addressed in a compassionate, humanitarian and appropriate manner, means that The Haemophilia and whole Blood Community continue to be treated as second class citizens in receipt of subsistence or indeed Lottery type payments.
Although financial recompense will never heal completely the wounds that have been left to expand over decades, creating turmoil, adversity and anxiety for families, however even at this late remove such an effort by Government could be the commencement of the healing process.
Having ignored the “moral dimension” the present Government or Prime Minister Theresa May ought now act on its own moral imperative. It is now the time for Government to make good on its apology. Also, it is the time the Government to commence the process of healing the divisions of the past. It is a time to show when Government speaks it is not just for delivering platitudes as in past decades but that it is now acting to address the injustice of this heinous tragedy. Now is the time to ensure that no one who was infected or affected continues to suffer in the manner in which so many have before. Now is the time to ensure that in time, those persons with a destroyed quality of life and those with decimated futures can exit life with dignity, safe in the knowledge that those who are family members or loved ones, are appropriately provided for. Now is the time to ensure that those who remain will no longer have to fight unnecessary and divisive battles. Although justice delayed is justice denied, any justice at all even at this late remove will be welcomed. Now is the time to ensure that that justice is finally done.
Successive Governments have been the problem who were unwilling to acknowledge the true extent of the health catastrophe that occurred and the moral obligation that so arose. Government must now be part of the solution.
The setting up of this Inquiry is an incredibly welcome step. Also, the apologies of Government so delivered, and the empathetic indications so provided are welcome. However, if this is to mean anything, Government must ensure full and candid disclosure of what went wrong and why.
Government should not rely upon legal professional or public interest privilege in the context of this Inquiry and it should be sought by the Inquiry that it waives its privilege in relation to sensitive documentation so that an all-encompassing Inquiry can occur.
In Ireland during the Lindsay Tribunal the Government waived that privilege. If the apology that has been delivered is to mean anything, action on fair and equitable compensation must now follow long before this Inquiry concludes its investigation.
A model exists in my home jurisdiction in Ireland which I framed that has been in existence for more than 20 years to alleviate the healthcare concerns, the financial requirements and Insurance issues of people infected and affected through provision of healthcare benefits and fair and equitable compensation. This allows people to live with some dignity in the context of their own quiet desperation. Also, the widows and the children of those persons who died are fairly compensated through the entitlement to fatal applications, nervous shock type claims and loss of society claims which is for loss of companionship, care and support that the deceased would have provided.
If matters here are allowed to continue to fester where Government remains inactive, then the apology of Government, the empathetic indications, are hollow in the extreme.
Accordingly, The Haemophilia Society calls upon the present Government under Prime Minister Theresa May to provide immediate action in the following areas: –
- Financial Support.
At present, differential financial arrangements exist depending upon where victims were infected in the United Kingdom. A postcode lottery to entitlements to subsistence payments must cease immediately. At the very least, as an interim measure, all should be eligible for the same financial arrangements as exist in Scotland. Such a concession is only a start and is not the end of matters. Government ought to address the fair and equitable compensation situation they had previously refused in the context of The Irish Compensation Scheme.
More crucially as occurred in Ireland it is necessary that the Compensation issue is addressed before the conclusion of this Inquiry where you the Chairperson have the entitlement to make an interim recommendation. The Haemophilia Society request that the current postcode lottery of subsistence benefits would immediately cease and are replaced by the level of support available in Scotland as an interim measure. Also, that the issue of compensation be addressed on the basis of the Irish scheme model on a moral responsibility basis pending the conclusion of this investigation as requested all those decades ago by Mr Justice Ognall.
- Support and Counselling
This Inquiry will inevitably take the infected and affected on a rollercoaster emotional journey which will reveal old wounds and create new wounds and obliterate the coping mechanism of denial. In short what is termed by Consulting Psychologists as both re-traumatisation and overcoming denial will occur. Essentially this means the re-experiencing of emotions connected to past traumatic events.
The psychological impact of events thus far cannot be underestimated. Many will be suffering already with undiagnosed psychological and psychiatric illnesses. The Inquiry process must be sensitive to such a scenario and provide comprehensive psychological and psychiatric support at all stages to those who will be both attending the Inquiry and following its work from a distance. It is essential that this already fragile Community is not further damaged. Many persons who lost loved ones are outside the health care system and are not in contact with any support service so it is essential that such a potential failure is addressed.
The Inquiry Team has announced the availability of Counselling support during these opening days of the Inquiry which is to be welcomed. However, a much more permanent and indeed more comprehensive system must be set up as a matter of priority to provide an appropriate compassionate response to people’s needs and requirements as the Inquiry progresses.
It would be fundamentally wrong and potentially catastrophic to vulnerable persons for this Inquiry to create through its necessary work a re-traumatisation situation where, yet again, the Community is left to its own devices to address such a scenario without the appropriate Expert response or supports being provided.
The Inquiry has requested contributions on procedural issues and I intend to address those exact issues now. The Society’s Members wish it to participate in a comprehensive, proactive and effective manner during the course of the Inquiry’s investigation. To achieve its Members objective, the following requires to occur: –
- That all Core Participants have access to all Discovery documentation.
- That all Core Participants have the ability to indicate what documents should be utilised as part of a Core Booklet for examination of Witnesses.
- That each Core Participant has a right or entitlement to examine Witnesses in accordance with its legitimate interests under the Terms of Reference arising from its Core Participant Status. I have concluded two public statutory inquiries into the contamination of blood and blood products outside of the United Kingdom where the ability to constructively participate in this manner was granted to victims. Anything less is inadequate participation where it is unfair to expect the Inquiry team to represent conflicting interests on any conflicting topic.
- That equality of resources ought to apply to all Core Participants. In public statutory inquires in which I have been involved victim groups have been entitled to participate on an equal resource footing with Government and other bodies through the subvention of the necessary expertise that is required by way of medical and scientific input. If the Inquiry itself needs an expert panel to assist it – it is no different for the victim groupings. The government bodies already have access to necessary haematological, virological and viral inactivation and other similar expertise who are already on their payroll. Equality of participation means equality of resources. To participate as a Core Participant nothing less is adequate – no constraints apply to government or pharmaceutical bodies so none should apply to core participants
- Every personal statement necessitates the review as a pre requisite that persons medical records. To do otherwise creates a potential injustice for individual. This is that persons only opportunity to tell his or her story which ought to be accurate. Such a person is entitled to know whether he or she has been informed of crucial diagnosis in a timely manner which can only be ascertained from those medical records. All other Inquiries have used the medical records as a crucial and essential source of information. The procedure that is contemplated is fundamentally flawed in that a period of 21 days from the date of cost entitlement to prepare a statement that could necessitate a) obtaining the records and b) reviewing the medical records which are undoubtedly extensive and comprise many medical charts located in various hospitals and c) interviewing the victim which in itself can be a traumatic event for the person involved.
All of the foregoing presupposes the ready availability of the entire of the medical records. I don’t use the term fundamentally flawed lightly. I say this having taken many hundreds of cases on behalf of people infected where this type of medical records examination was required. What is proposed is unrealistic and unsustainable.
It should be remembered that medical records are essential in relation to the following i) ascertaining infected blood product ii) ascertaining if a patient was informed in a timely manner of their diagnosis iii) ascertaining if there were any physical examinations for signs of AIDS iv) ascertaining first abnormal liver function test results v) ascertaining first date of initial virological diagnosis with Hep B Hep C HIV etc, appropriateness of treatment regimens for virological infections.
Core Participant status for the victims is to put the people at the heart of the Inquiry – failing to address these issues or anything less diminishes the quality and extent of their legal representation and therefore their participation.
I now want to address the elephant in the room that no one has spoken about to any extent the MULTI-NATIONAL PHARMACEUTICAL COMPANIES
The Haemophilia Society and its members require the pharmaceutical companies to be investigated by this Inquiry to the utmost extent of its powers. The NHS was grossly negligent in allowing the utilisation of multi donor pooled plasma derived products manufactured from high risk donors where such products were neither properly screened nor virally inactivated. The Pharmaceutical companies manufactured and distributed those products to the NHS – the extent of the risk associated with those products which UK government or the NHS deemed acceptable can only be ascertained by investigating those companies.
At the outset we endorse haemophilia Scotland’s opening statement and on behalf of my clients we must make observations on the failure of the Scottish government to seek core participant status. If a government is not prepared to participate it does not augur well for full disclosure occurring most especially any prospect of the waiver of legal professional privilege. This is a ploy if it continues into the disclosure of documentation issues requires to be met by the Inquiry with the full rigour of its statutory powers. Nothing less is adequate.
THE HAEMOPHILIA SOCIETY
My clients are a charity who have represented people with Haemophilia for more than 68 years. As a Practitioner who for a large part of my Career has looked after the interests of people with Haemophilia, I am struck to say the least, by the angst that exists within the U.K. Haemophilia Community. In no other jurisdiction in which I have been involved on behalf of people with Haemophilia and I have a working knowledge of Canada, United States, Japan and New Zealand arising from contamination of blood products has such a disharmonious situation existed.
The significant passage of time that occurred from the date of initial infection to the date of this Inquiry, where subsistence type payments have been delivered in the intervening time period, has created such anxieties. I would hope for the sake of Haemophilia Community into the future that the fractured nature of the Community that exists, when an understanding of the awful consequences that occurred is delivered by this Inquiry would have a cathartic effect and be the commencement of the healing process.
Also, I was particularly struck by the evidence delivered by the late Chairman of the Haemophilia Society, The Reverend Alan Tanner, who indicated that “at one time, I conducted the funerals of 6 of the 12 members of the Executive of The Haemophilia Society within 2 years.”
It should be remembered, the Society although a legal entity in its own right is in essence an entity that is composed of persons who are people with Haemophilia who had contracted HIV, Hepatitis C etc. from receipt of contaminated blood products where, the Executive of the Society suffered the same ravages and consequences as the Haemophilia Community itself. It is difficult, to say the least, to provide support to a Community as a voluntary Organisation without significant resources where Government has failed to so do, most especially if that requirement exists against a backdrop of ill-health and death.
Over the last year I have criss-crossed this nation, I have met the infected, the affected and I have been privileged to hear their stories and I have been nothing less than appalled by the complete failure of a humanitarian response to the plight of these people.
Over 24 years I have worked in advancing the cause of people with bleeding disorders who have contracted viral infections in my country. I have had the privilege of representing those persons at public statutory inquiries, formulating the scheme for compensation, negotiating and finalising that scheme with government. In Ireland the entitlements that exist on a statutory basis include compensation assessed on an individual basis in accordance with the law of tort.
A further extension of that statutory Scheme in 2006 provided for mortgage protection, life assurance and travel insurance. Also it should be appreciated that priority healthcare entitlements exist in Ireland for such persons.
In the United Kingdom people in identical circumstances who have suffered equal injustices have been left to die in poverty without dignity and without knowing why they were infected or were dying.
Such a range of statutory entitlements was not achieved easily or without significant endeavour. My clients, the Haemophilia Society intend that such an outcome will occur through this Inquiry process.
It is now necessary for this Inquiry to make interim recommendations to alleviate financial hardship and address the compensation issue without further delay.
It says to this government and to previous governments you ought to hang your head in shame for failing your vulnerable citizens and our members in their greatest hour of need.