REMINDER: Joint Member Meeting – SIBF and Haemophilia Scotland, Saturday 20th January 2018
16th January 2018
Urgent Question in Parliament at Westminster
30th January 2018
At the recent Joint Member’s meeting held on the 20th, one member, a stage 1 widow, read out a brief statement, which succinctly illustrates her feelings on the stage 1/stage 2 distinction in relation to the death of her husband:
“Stage 1 Deprivation of Allowance
I consider this to be utterly unethical and totally without reason.
When someone is given a treatment/injection which is almost certainly going to result in premature death, how can someone define when/what stage he/she is going to die?
Stage 1 / Stage 2 what is the difference?
DEATH IS DEATH.
It leaves devastation, desolation and desperation even under normal circumstances.
To be consigned to “stages” is to add to an already cruel and unjustifiable situation.
In addition to the above brief description of consequences of losing someone in this way, to classify death as at Stage 1 or Stage 2 is not just discriminatory, the rationalization defies description!
It is a pure example of “man’s inhumanity to man” inflicting psychological torture.
Anyone whose loved one’s death is classified in this way suffers not only the cruellest loss but also an indescribable financial insecurity.
We must have these defined stages removed forthwith.
I find it astounding that any decision maker can find this a humane or acceptable situation completely beyond understanding.
To inflict psychological torture and financial deprivation on anyone is unacceptable!
Adding insult to injury on an already very traumatized and saddened person is incomprehensible for ANY reason.”
Note: any comments on the posts do not necessarily represent the views of the trustees and staff of the Scottish Infected Blood Forum, but are the heartfelt sentiments built up over many years of suffering and pain of some members.
2 Comments
I completely agree with the lady above, and please accept my sincere condolences.
The Scottish Government is playing the same tokenistic & cynical delaying game with regards to the Clinical Review Group as is the UK Government with the new National Inquiry.
So, eventually, after a load of aggro, and stushie, they moved the goalposts a little and accepted cirrhosis as a qualifier for Stage 2.
However, given the severity and complexity of HCV-caused and Interferon-caused illnesses experience within our group, (mainly among the arbitrarily assigned victims labelled as Stage 1’s) and the multitude of associated and related complaints, both mental and physical, it is easy to see that ‘progressing’ at this rate, they are merely playing for time, to save cash..
Is increased susceptibility to death from recognised cardio complications (associated with HCV victims in ‘Stage One” )not as fatal as death by cirrhosis?
If not, I wish someone would explain to me. why not..
Is nephritis (progressive failure of the kidneys ) in HCV victims much more benign than cirrhosis also?
Is increased susceptibility to death from brain hemorrhage within our HCV victim group (this has been recognised for more than a decade now) not ongoing and not as terminal ?
Peripheral neuropathy, or deadness of hands and feet (which makes walking very difficult) has been recognised in HCV-victims, but hey, I wonder how long they’ll take to recognise that one?
Similarly, painful cysts (above liver and kidneys, as in HBV patients. is also recognised and can lead to higher incidences of cancer within our group..
I won’t hold my breath waiting for them to recognise that one either..
What about the Increased & accelerated arthritis component of HCV, due to years of joints receiving vastly reduced or non-properly functioning synovial fluid? Personally, I can barely hold a pen anymore, or get myself upstairs without terrible pain.
As the bereaved lady above says, dead is dead, (and I have mentioned only a very few of the illnesses that we have been given which are recognised as leading to premature death in HCV victims)
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The endless suffering from this terrible disease consumes our whole lives, (but meanwhile) Government-appointed medical personnel look at one ‘complaint’ at a time, rather than at the whole person, and at the histories of our wrecked lives, and at the total devastation this NHS -given disease has caused us and our families..
However, I suppose complaining about the snail’s pace of the last 30 years of what could be loosely labelled as ‘progress’ , and their looking at one ‘complaint at a time’ is a double-edged sword, and I shouldn’t expect them to recognise all of the terrible illnesses we’ve been given, too soon..
If so, the next step might be them setting private companies like ATOS on us..
ie. barely or non-medically qualified personnel filling in our check boxes.
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I look at the time-span and the criminality, and the incompetence writ-large, and the endless delays, and the coverups, and the legal profiting..
And being far from reassured, I realise..
You couldn’t make it up..
Listening to the above statement being read out ,was for myself , a stage 1 widow , very moving, but also really comforting, the lady concerned was actually a stage 2 widow , and knowing we have such amazing support from the rest of the widows and the group as a whole, is really appreciated.