North Wales Assembly Member Mark Isherwood has called on the Health Secretary to respond to public criticism of the way Wales supports people with rare conditions.
Speaking in this week’s Business Statement in the Assembly Chamber, Mr Isherwood said:
“Could I call for a Statement from the Health Secretary on rare conditions in Wales, once he’s read the Spring 2017 edition of Vasculitis UK’s Newsletter, and an article within it entitled, ‘What’s up with Wales?’?
“This article says: ‘We, at Vasculitis UK, have a really good relationship with all the leading medical vasculitis professionals in England…However, in Wales, it is a different situation. Having been given a diagnosis and a treatment plan by a leading world expert in England, The advice of the expert “over the border” seems to be resented and ignored’ when we come back to Wales. ‘There are various natural problems in Wales for people with rare diseases…There seems to be a last century attitude in Wales’ and ‘There seems also to be a general culture of hierarchy and closed ranks’.
“Now, even if that’s not 100 per cent accurate, the fact that these people hold those views, based on their experience of treatment in Wales, and put that into a UK magazine, must merit attention, and I hope that will justify a Statement accordingly.”
Leader of the House Jane Hutt AM replied: “I have, over the years, met with groups, as you will have done here, and indeed professionals who are delivering in terms of addressing the needs of people with rare conditions. And I don’t recognise that statement that was made, but I know that the Cabinet Secretary will be taking very serious consideration of how we are progressing in terms of meeting those needs.”