As you know I had a meeting today with the Health Minister of Wales, Mark Drakeford. What a breath of fresh air he is.
We spent about 30 minutes going through a list of items I wished to raise. Each one was considered and discussed. Sometimes he'd say 'what would you suggest?'. How refreshing.
The list included the recommendations in Target's Pathfinder Report. Training for GPs to improve diagnosis of ovarian cancer, an ovarian cancer awareness-raising campaign to match those in N Ireland, Scotland and England, a review of diagnostic services, equipment and waiting lists, and the more local issue to Wales, the imminent review of how to combat the drugs postcode lottery we have here. He confirmed the review panel on the allocation of drugs would include patient representation.
What was really enlightening was sharing with him the dreams we've expressed on this site for better and fairer health services across the UK. He's a pragmatic and intellectual Minister of Health whose responsibility it is to run a service in a devolved nation and to budget with all the challenges that poses.
We discussed relocating to obtain better health services. He reminded me that Wales leads the world on some cancer treatments and he said that even within Wales families moved to Cardiff to obtain specialist treatment unavailable elsewhere. It made me feel he would agree in an ideal world that our rare cancer should be treated locally but it might make more sense for some to gravitate to the larger specialist hospitals that have more experience and access to clinical trials and offer a broader range of novel treatments.
He agreed with me that more statistical evidence should be made available in Wales even if it compared unfavourably with other UK nations. He said poor statistics were a route to improvement. This is a new paradigm for Wales. It would be a massive step forward if he were able to persuade the Wales Government to take the same view. In my view a lack of statistical data has impeded progress in the areas of devolved governance. I added that it should be information that is comparable with the other nations in the UK to give patients better choice and early management of their treatment.
I came away from the meeting feeling he had taken note and we'd agreed some action points. From a personal point of view I believe more than ever that patients with rarer diseases need to keep an open mind about where they're domiciled and what resources are available in their locality.
That's the update from Wales.
I can't quite imagine obtaining access in the same way to the Secretary of State for Health Jeremy Hunt but I am open to an invitation.
Annie
well done love x G x 
