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
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Whippit
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It's helped me understand that even politicians agree we have a patient choice and we can chose to move if we want. Depends on whether the positive impact on our lives outweighs the negative impact. It's good to remind myself I have a choice in everything I do. I might just not like the choices available to me.
xx respect to the man. xxxx
Well done Annie,
Its so good to have someone fighting our corner for us.
Target forwarded me the link to the Wales Online where nearly a page was devoted to the review of the way drugs are allocated in Wales to stop the postcode lottery. That was 10 June - 5 days after the APPG.
It gave me an opportunity to thank him for this, and to look at the four recommendations made by Target Ovarian Cancer in their Pathfinder Study. It was really helpful hearing his views on why there are different services for ovarian cancer across the UK. He did agree with me that if there were 280 deaths by road accident every year (that's the number of deaths from ovarian cancer each year in Wales) something would be done about it.
I really do think he will take positive steps to bring about improvements but I can understand his explanation as to why survival rates differ across the UK and are better in the major centres of excellence for ovarian cancer.
Just putting my feet up this evening and thinking about it all. xxxx Love Annie
I have been asked by Target to take part in some research into the effects of living with OC on older women. Gerontological research! I object to the classification and my attitude will probably buck the stats!
Congratulations on the effort you put into this and what sounds to be an encouraging outcome. Will he keep you informed of the steps he is taking?
Not to do with all that you have done but in relation, to patients opting to relocate to get better treatment, it reminds me of the comment by, I think Enoch Powell, years ago, when so many were out of work...that they should ' get on their bikes ' ....some people just live in a different world..... if only it were that easy and the option were available to every patient.....the postcode lottery applies in England as well and not every patient can move home. I think it would be good experience for Jeremy Hunt to meet you, as you are clearly a force to be reckoned with.
I do not have the energy for campaigning so am really grateful to people like you who do not give up but keep trying to bring the problem into focus to those who may be able to take some action.x
I came away from the meeting elated that the problem of a postcode lottery access to drugs in Wales is going to be tacked and a review will take place in the next few months. It seems the presentation to the APPG got back to the Minister for Health and some good might come of it.
I was also representing Target who have made recommendations in their Pathfinder report to improve screening facilities for OC, awareness-raising, and GP training. These were all taken on board and we're agreed to have a recap as to actions.
What rather dashed me was the quest to get more equitable treatment across the UK. It was enlightening to hear about the bigger picture of health in Wales and it was good of the Minister to share his thoughts with me, but he will not be able to do anything about the differing facilities and access to trials - particularly in the devolved nations. I do understand why now. It makes sense but I need to process what I was told and try to work out how to put the message across.
It is a harsh reality that our NHS is under-funded by comparison with other EU countries where taxation and private health insurance supplements a basic health care system. This means there aren't the funds to provide the same level of service. It is accepted that we have the right to relocate in an attempt to access better facilities. There's right in that and there's wrong in that.
I have asked the Minister for improved communications from the Wales Government so we all understand the situation as patients. Had I been aware of the constrictions I would have been forewarned and I would have been much more inclined to take our private medical insurance. That's rather against my principles - but so is taking advantage of the fact that I have the ability to relocate to London. It all seems very unfair at the moment and I'm still pondering on it all.
Well at least I have raised the profile of Ovarian Cancer with the Health Minister of Wales. I'm not so sure I've done anything for any of you the other side of Offa's Dyke or over the water in Ireland. I guess that's the downside of dividing us all up into powerless little nations.
Once I've got my thoughts in order I'll post something up.
Thanks. You have done brilliantly to get a meeting and be listened to, even.
I did not know that Private health care supplemented the budget for health in other countrries. As a big supporter of the NHS and an NHS patient I would be willing to have my tax increased if I were sure it would go the NHS (and Education). If you decide to take on Mr Hunt.....wasn't he minister for Culture, heaven help us, a short while ago? Good luck. I do admire your tenacity, energy and ability to pursue this vital issue. And extra special good luck with your treatment.
We're on holiday now in Somerset so won't be posting much.
Re- Jeremy Hunt- my MP Greg Barker did get a letter from him when he brought up the bad stats that East Sussex had and I was sent a copy that I sent to Ovacome. Perhaps he is approachable- go for it!
Have a wonderful holiday away from it all, and hopefully some lovely sunshine too.
This problem about regionalisation is linked to our having a rare cancer. I wonder if your area is like Wales; has poor stats for ovarian cancer but is a world leader for other cancers. I seem to be living in the wrong place to have ovarian cancer. We have the choice to move these days to get a better job, or a better school for our children, but it hadn't occurred to me we need to consider whether 'years to live' is another issue we need to factor it to the housing equation. It has also dawned on me that to some extent the three are inextricably linked and if you're smart you don't even have to pay privately for privilege.
Had I been irresponsible and smoked and drank then Wales would have been ideal. Having a high proportion of lung and throat cancers Wales is a world-leader in these. I can see the logic in it but it hurts.
There just aren't enough incidences of ovarian cancer in some places to build up a high level of expertise and specialism. Not only should we all be friends on here, we should all be neighbours!!! I'm only jesting but there is a germ of truth in it.
These are all very dizzying thoughts. We have a labour government in Wales and I'd consider myself to have liberal/labour political persuasions but the world has turned upside down. Even in a left-wing stronghold it is accepted residents can espouse 'on your bike' Tebbit solutions to local problems.
The opposing argument is that we should all remain where we are to provide experience for professionals working in less illustrious areas in order to preserve basic services to those who can't afford or are unable to relocate.
I think the excuse for the poor stats is that it was based on previous data and wasn't therefore showing the true picture!
However, the Macmillan CNS I had was totally useless and couldn't tell me anything-she was then off for about 18 months before she contacted me again!
I did have a much more successful relationship with the CNS when I was sent to see the consultant at Brighton, however.
I think the main problem with living in the South East is the density of population and the over stretching of services that result.
I know people do move about for schools but that has pitfalls too- primary schools can almost change over night as teachers move around so quickly too.
Improving services across the board is the only answer.
Am I rambling? In true holiday mode now- have even managed to read a whole newspaper!!
You're not rambling. Improving service across the board is the answer but the requirement for that is more funds and using funds more intelligently. Wales has just reduced an astonishing 22 health boards to seven. I would have thought 2 would be enough but of course restructuring costs a fortune in terms of redundancy, rebadging, change management, etc. so I feel the progress to date since the new Minister took over in March is quite a reasonable achievement.
You have to work out what you can change and even if improvements come about it isn't going to be in time to improve our lot.
In the short-term the only solution is to invest in private medical health care and not even that is accessible to us now.
I find myself at the end of the impasse - with the resolve to relocate. My only short-term option.
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well done love x G x 
