Baroness Masham, an inspiring campaigner on disability rights
Image via Wikimedia Commons https://commons.wikimedia.org/wiki/File:Baroness_Masham_of_Ilton.jpg
It is with sadness that Haemophilia Action UK, long standing campaigners on Contaminated Blood learn of the death of Baroness Sue Masham of Ilton DL. However it is with great appreciation that we remember her contributions over several decades to the fight for truth, justice and safe treatment for haemophiliacs infected with HIV and hepatitis viruses in the 1970s and 1980s. Baroness Masham was vice President of the national Haemophilia Society and contributed to many debates championing the rights of the haemophilia community. She was a Crossbencher and a member of the APPG on Haemophilia and Contaminated Blood. Baroness Masham appeared on the “This Is Your Life” TV programme that highlighted how she overcame her own personal challenges, Big Red Book recalls,
Susan, who was born in Caithness and was a keen rider in her youth, took a job at a stables in Swindon following her education. A riding accident in 1958 left her confined to a wheelchair, but despite her disabilities she went on to compete in several Paralympic Games, winning medals for table tennis in 1960, 1964, and 1968.
Baroness Masham was one of the first politicians to recognize the “Special Status” of haemophiliacs in 1987, that haemophiliacs were part of a “specific patient group” living with an inherited blood clotting disorder and were already impacted in terms of their education, employment and insurance. They were then impacted again with life threatening HIV and hepatitis infections through their factor concentrates containing multiple deadly viruses. There were often several members of the same family infected. Much of the treatment was imported from the US and sourced from “high-risk” donors such as prisoners, gay men, sex workers and skid-row donors. She also drew attention to the UK failure to become self-sufficient in blood products.
Hansard 10th November 1987
Baroness Masham of Ilton
My Lords, if England and Wales had been self-sufficient in blood products, as Scotland was, would the tragedy have been as great as it now is? Will he agree that those haemophiliacs have a double tragedy in suffering not only from haemophilia but also from AIDS? Are the problems of their families not also very great?
(However evidence sourced by Carol Grayson, the author of this blog in the early 2000s and submitted to both Archer Inquiry and the Infected Blood Inquiry showed that Scotland was not entirely self-sufficuent. Scotland had also used imported US blood products at Yorke Hill Hospital, Glasgow, leading to a direct pay out from a pharmaceutical to the family of a child infected with HIV in 1980.)
In 1999, Dr Peter Jones and Dr Peter Hamilton wrote the following letter to Baroness Masham which the Newcastle Haemophilia Centre shared with campaigners as follows:-
Letter to Baroness Masham from Dr Peter Jones and Dr Peter Hamilton (14th Dec, 1999) highlighting the plight of Newcastle haemophiliacs shared with Grayson and Longstaff
In 2002, Baroness Masham drew attention to haemophiliacs being infected with hepatitis C and exposed to the blood of persons who had died from variant CJD as well as HIV. She specifically referred to Newcastle haemophilia HIV figures.
Hansard 6th February 2002
Baroness Masham of Ilton: My Lords, I also declare an interest as a vice-president of the Haemophilia Society. Is the Minister aware that in Newcastle upon Tyne 75 per cent of haemophiliacs have contracted HIV? In addition, bearing in mind the problems of CJD and hepatitis C, is it not time that haemophiliacs were given the safest possible form of clotting agents?
Lord Hunt of Kings Heath: My Lords, I do not believe that I can add to the response that I gave to the noble Lord. As I said, the advice that I have received is that as yet there is no evidence to suggest that there is an issue of safety between the different products. We understand the feelings of those in the community who are involved and affected by the tragic events that have occurred. We are obviously considering the matter.
Baroness Masham highlighted the post code lottery prescribing of Recombinant for haemophiliacs. Grayson supported her husband Peter Longstaff in his fight to challenge this which led to a case in the High Court.
Baroness Masham questioned the length of time it would take to introduce Recombinant for all haemophiliacs. Over the years treatment was rolled out by age with the youngest haemophiliacs receiving Recombinant first.
Hansard 26th February 2003
Baroness Masham of Ilton: My Lords, I declare an interest as the vice-president of the Haemophilia Society. Why are patients in Wales and Scotland receiving recombinant, which is a safer form of blood product, but not patients in England? How long will it take for all English haemophiliacs to receive it?
Lord Hunt of Kings Heath: My Lords, as I said in my Answer, we expect that the scheme will have been completely introduced by 2006. The position in Scotland and Wales is an issue relevant to the administrations there.
The number of haemophilia patients in the rest of the UK is much smaller than that in England. That is also a factor in determining the timescale for introducing the scheme completely. I can also reassure the noble Baroness that the Government will work with the Haemophilia Society to put in place a strategy to implement the scheme effectively.
Longstaff went on a very public treatment strike until his death in 2005 refusing human factor concentrates and never received the safer product.
As the Guardian later highlighted in 2009, 800 haemophiliacs were exposed to v CJD.
800 haemophiliacs given tainted blood at risk of vCJD
Alarming warning to hundreds of sufferers who received transfusions
A year earlier in 2008, Baroness Masham challenged the governments withdrawal of funding to charities including the Haemophilia Society. She responded to a question posed by Lord Morris of Machester,
The Question was as follows:
To ask Her Majesty’s Government what review was undertaken of the extent and depth of deprivation in the haemophilia community before the decision was taken to cut the Haemophilia Society’s core grant by 70 per cent.
Hansard 9th October 2008
Baroness Masham of Ilton
My Lords, I, too, declare an interest as a vice-president of the Haemophilia Society. Is the Minister aware that one of the society’s campaigns focuses on blood safety? Is not safety in health one of the top priorities? Does she not consider the society to be a special case? We are talking not only about people with HIV and hepatitis C, but also about people with variant CJD. They really need support and help from their society.
In 2018, she questioned the following regarding the Infected Blood Inquiry and devolved nations.
Hansard 29th January 2018
My Lords, will Scotland and England be treated the same? Will the inquiry cover all of the countries involved, including Northern Ireland, Scotland and Wales as well as England? There have been some problems in the case with which I was dealing with regard to compensation if you lived in Scotland and were contaminated in England, or vice versa.
Regarding the death of Baroness Mashan, the Northern Echo reported,
Baroness Masham of Ilton died peacefully in hospital on Sunday, the Spinal Injuries Association (SIA) said.
The charity, which was founded by Baroness Masham in 1974, said on its website: “We are extremely sad to announce that our founder and life-long president, Baroness Sue Masham of Ilton, passed away peacefully at Northallerton Hospital on Sunday 12 March.
“It goes without saying that everybody at the Spinal Injuries Association (SIA) is devastated to have lost our greatest champion.
“49 years ago, in 1974, she founded SIA and is the reason we have been able to champion, fight, serve and support thousands of spinal cord injured people ever since.
Baroness Masham, Paralympian and longest-serving female peer, dies aged 87
Carol Anne Grayson is an independent writer/researcher on global health/human rights/WOT and is Executive Producer of the Oscar nominated, Incident in New Baghdad. She was a Registered Mental Nurse with a Masters in Gender Culture and Development. Carol was awarded the ESRC, Michael Young Prize for Research 2009, and the COTT ‘Action = Life’ Human Rights Award’ for “upholding truth and justice”. She is also a survivor of US “collateral damage”.