21st May 2012
At Health Question time in Parliament this week, I asked Nicola Sturgeon what she would do to ensure that the work of Health organisations is widely reported.
I asked this question in light of the revelation that a report regarding a lifesaving heart surgery - Transcather Aortic Valve Implantation (TAVI) – was kept hidden for 17 months, and was published only a short time ago.
Many of you would have recently read about Cecelia Bradley who fought alongside her family to get this life saving heart procedure.
It has been suggested to me that the reason this report was being kept behind closed doors was for fear of fuelling an already hot debate on the issue.
This is simply unacceptable.
In the interest of trust and transparency, work such as the TAVI report should be made widely available and as soon as possible to ensure that patients and clinicians can be fully informed of their conclusions.
But it would appear that this is not the only report dealing with a controversial topic that has been held back.
The health economic evaluation study of eculizumab which has been referred to on the Scottish Medicines Consortium website since late last year has still not been published.
Those of you familiar with the Joyce Juszczak case will know that eculizumab can help treat the symptoms of the rare blood disease - Paroxysmal Nocturnal Hemoglobinuria (PNH).
Like Cecelia Bradley, Mrs Juszczak had to go through an arduous process to get the treatment she so dearly needed.
If Mrs Bradley and Mrs Juszczak had had access to these reports earlier it may well have put them in a better position to make their case for treatment.