Thursday, October 6, 2011
Alex Salmond recently in his oath to Parliament said, “My first duty is to the people of Scotland”, Joyce Juszczak needs “miracle drug” eculizumab now
The case of Joyce Juszczak, 65, from Gourock, Inverclyde is truly tragic.
She has been denied medication for a blood condition.
If she doesn’t get this medication the disease she has could kill her.
So, she is taking her fight to end a postcode lottery for treatment direct to Nicola Sturgeon.
Joyce Juszczak needs “miracle drug” eculizumab.
This is because of a rare and deadly condition that destroys red blood cells and leaves victims at risk of kidney failure and potentially fatal blood clots.
If Mrs Juszczak isn’t given the drug and no one fights, it will be a scandal.
Despite being infirm and severely weakened by the illness, her daughters Beverley Hardie and Marlyn Milne will provide the physical support she needs to allow her to go to the Scottish Parliament.
She will be sitting in the gallery as Greenock and Inverclyde MSP Duncan McNeil questions the Health Secretary about her case.
Pressure shouldn’t to be placed on the Scottish Government as Alex Salmond recently in his oath to Parliament said:
“My first duty is to the people of Scotland”.
I would like to thank the First Minister for that and the future prescription of the drug eculizumab to Mrs Juszczak.
In politics, a person's word is their bond; well it is with me anyway, however I can only speak for myself.
Mrs Juszczak, who suffers from paroxysmal nocturnal haemoglobinuria (PNH) would be getting this drug, if she was living south of the Border.
And recently the Scottish Government has made much about bringing Scotland into line with England.
Kenny MacAskill said that in regarded to the UK Supreme Court.
Mrs Juszczak’s problem is that she failed in her appeal to an NHS Greater Glasgow and Clyde (NHSGGC) panel to prescribe the drug.
She had the unqualified support from her medical consultants.
Unfortunately another patient, William Devine, died within days of receiving a similar rejection letter.
As I said Scotland is a corrupt problem, unaccountable quango people who don’t live in the city of Glasgow are making decisions about the population.
This is a wonderful opportunity for the Scottish National Party to tackle vested interests and bring in sweeping reforms so that the panel of health boards is made up of people actually living in the community.
Consultants have now confirmed to the family that Mrs Juszczak’s symptoms have become more advanced.
She is bleeding more regularly, is left severely fatigued and has difficulty swallowing.
Mrs Juszczak is dying, she needs help.
And she needs help now.
Mrs Juszczak, said:
“I am hoping Ms Sturgeon will have a rethink. We hoped she would intervene, but she passed the buck and I was quite angry about that. I didn’t think I could go to Edinburgh in case I just didn’t feel too good, but my daughters managed to take some time off to help me. I am just very, very fatigued and up during the night in a lot of pain down my left side and down my back. Even when I am having a cup of tea, I have to stop to get my breath. It is quite frightening.”
Quite frightening, it must be difficult to live in fear.
Duncan McNeil said:
“Mrs Juszczak and her family remind us all that this is about more than health outcomes and value for money, this is about real people and the quality of their lives. They are only asking for what anyone else in their position would want, and it seems only bureaucracy is preventing my constituent from receiving treatment that would improve and prolong her life.”
Mrs Juszczak’s condition must be really bad if someone with the limited ability of Duncan McNeil can recognise it.
Mrs Hardie added:
“I just hope that Nicola Sturgeon will end the postcode lottery for healthcare and urge NHSGGC to allow mum access to this vital drug before it’s too late”.
It must be difficult to live in fear.
Experts say eculizumab is a potentially life-saving drug, obviating the need for regular blood transfusions in two-thirds of patients and virtually removing the risk of blood clots, the main killer.
Is anyone going to fight for Joyce Juszczak in the Scottish Government?
I would like to hope that just as First Minister Alex Salmond backed the case of Florence and Precious Mhango, he will act swiftly.
Someone needs to come up with a solution now.
As the person who proposed the Scottish National Police Force to the Scottish National Party on the 4th September 2010, along with the National Fire Service, my idea for the Police will save £1.7 billion over 5 years.
So, let’s save Joyce Juszczak, the Scottish Government has a moral duty to save her.
As Alex Salmond recently in his oath to Parliament said:
“My first duty is to the people of Scotland”.
Good opportunity to prove it.
The Campaign for Human Rights at Glasgow University