Today I have a meeting with Eluned Parrott who's the AM covering the area served by Cardiff and the Vale NHS Trust.
Eluned has had a long-standing interest in cancer. This week she has shown an interest in cancer research and has visited the Cancer Research UK stand at the Welsh Assembly.
She is in for a shock when I tell her that ovarian cancer research projects at the Velindre Hospital at at a halt because the oncologist interested in research into molecular characteristics of tumours is on maternity leave and she hasn't been replaced. The BriTROC 2013 project is currently inviting new centres to join their research project and I'd like to ask why Wales isn't joining. My oncologist has been obliged to take on her colleague's patients and is stretched to breaking point. Plans to join this important project have been abandoned.
She might be as disappointed as I that Cardiff and the Vale have let slip the only radical surgeon they've ever had on their team and the NHS Trust is still scratching its head about the Desktop Trial which operates across many centres in the UK. This trial offers radical surgery along with chemotherapy on first relapse of ovarian cancer.
My take on it is this NHS Trust is strapped for cash. Cuts to staff budgets are leaving oncologists overworked and stressed with no time to take on research work. There would of course be a cost implication if they'd kept a radical surgeon on the team. It would raise patient expectations. It would lead to more complex and a greater number of surgical procedures for women with ovarian cancer. Is cost holding back the Wales NHS? Are we victims of parsimony or victims of a government that does not prioritise health?
The Minister for Health for Wales said most patients aren't as discerning as I. Well, I'm not only discerning. I'm articulate and I'm angry. I shall be taking my thoughts and some evidence to the Assembly Member today. Alas I have only circumstantial evidence. I shall be asking her to put her political weight to these questions and demand answers. Hopefully I shall be speaking on behalf of you all.
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Good luck Annie. Your commitment to improving the availability of treatment for the women of Wales is inspirational. I hope you are also taking the time to relax and look after yourself.
British Empire Medal awarded on Queens New Year and Birthday honours alongside the MBE, CBE, OBE and KBE. All part of the most excellent order of the british empire.
The BEM was scrapped by john major but reintroduced by david cameron last year. X
But a holder of the British Empire Medal all the same? I'd love to know more about that. Must be a great honour.
Carers should get a gong too! x Annie
in reply to
That's very exciting . What year did you receive yours Paul? And what did you do to get it? I've never actually met a BEM. I guess you must be a major? I've never met a major either except my father's cousin was a major .. though I never met him either. Tina
Thank you Anniefor what you are doing. The points you are raising are important, not only in Swales but countrywide from what I hear and if you have any ideas for what we can all do to support you and extend what you are doing, pls say.
There are plans afoot to form a patient coalition. More news as we progress. We're looking to identify active women. Anyone interested who's had a diagnosis of ovarian cancer please PM me your email address and I'll be in touch. Xxx Love Anne
Thanks so much for the message about the TV programme on the health scandal in Wales. I emailed the address they gave us at the end of the programme. Let's see if anything comes of it. XxxA
Thanks for your comments all. I had a really helpful and productive meeting with Eluned Parrott who's not afraid to ask challenging questions in the Assembly. The tenet of my observations was not new to this AM who's aware of other residents in Wales who have been forced to relocate to obtain better and fairer health services. She didn't express any surprise that the Velindre Hospital are not covering staff on maternity leave and this has resulted in missing important clinical trials.
Part of her remit is research and she will be asking some questions as to why we are not active in Desktop and BriTROC and how we managed to lose our only radical surgeon.
I'm providing her additional information and she'll be putting in FOIs that will be answered. The NHS Trusts can fob off patient requests but they can't duck questions posed by the Government. I shall continue to campaign for better treatment for Wales.
We must also campaign to make patients more discerning and more vocal. If you're disappointed with your local services you need to make your voice heard. We must redefine the word 'patient'. We are people under medical care or treatment; we are not sufferers or victims which is the archaic definition of the word. The patients should no longer be patient. Our voice is the most influential to bring about change for the better.
xxx Annie
You totally amaze me Annie. You started off quietly and you are like a tidal wave gathering such strength. You are so articulate. Thankyou for doing so much for others, you do deserve recognition for what you do.
Thank you for your kind comments Sue. I have gained so much confidence and understanding from women on this site. I loathe injustice and it seems to me the current state of the NHS - or should I refer to the NHS's - in the UK is a disgraceful postcode lottery. Patients are ill-informed and they lack the confidence to question what is going on. We have for far too long just been passive recipients of whatever is handed out to us and we think we should be grateful.
I don't want recognition. I shall continue this campaign from London but it's heart-rending to think I'm abandoning my friends in Wales who are suffering such inequality of treatment. Political wheels grind too slowly for those of us with short life expectations. We should make representation through official channels to register our dissatisfaction but we also need to empower women to make contingency arrangements for themselves and their families to achieve optimal survival.
Caxton discovered the power of the press in the 1400s. We are a generation in 2013 who have discovered the power of social media to effect change.
I'm so grateful to all my friends on this forum.
with loads of love xxx Annie
Well done Annie. A stiff drink if you want one, a long peaceful sleep if not. If any of us deserve state of the art treatment - and I believe we all do - it is you. Thank you so much for fighting these issues, which affect almost all of us. I am with you in spirit - almost literally. How else is a poor hack supposed to work late at night? Cxxx
I appreciate your support, and yes I did have my favourite tipple last night. A glass of Laphroigs with a glug of water. Whilst my immediate concerns are primarily related to Wales they are of particular significance to every woman in the devolved administrations because the opportunities they have are limited compared to the best in England.
In a broader sense my quest should touch every woman with ovarian cancer across the UK. It's vital we exercise choice and in order to do that we must be informed. I've discovered my oncologist only broaches treatments and trials that are available in my own NHS Trust and I find in some respects it is poorer here than other trusts in Wales and very poor compared to the best in England.
She has not suggested radical surgery and would not be drawn into a discussion on its merits. I think perhaps it is different for you in England. The rules of devolution for NHS patients in Wales is that the buck stops at the Velindre, Wales' major cancer centre. If Wales' major cancer centre doesn't offer it we can't have it.
I have to be incredibly careful to get facts from people outside the health board. Most of my information is drawn from other patients and obviously information shared on this site. I have now got the name of the radical surgeon who left Wales and have emailed him to see if he can explain whether there were any barriers that prevented him continuing his work here.
Each one of us should be aware where the best treatment is offered and we can then make a choice as to whether we want to access that treatment. We do have a choice but some of us might not like the alternative to local treatment. It is likely to be costly in terms of travel and accommodation, it is likely to be inconvenient, it may be impersonal compared to staff we know at our local facility and it is potentially risky as some patients on clinical trails end up in A & E. If I'm in the wrong place at the wrong time my medical records won't be available.
My choice is to put up with the cost, inconvenience and risk and opt for a centre of excellence that might give me additional life. It's essential to understand from the outset that attendance at a centre of excellence is by no means guaranteed to give better treatment or a longer life but at least I shall feel I have done what I could.
I'm far from amazing or inspiring Dy. I'm just a cancer patient who's discovered she has second-rate opportunities. It didn't take much for me to become critical of the situation in Wales as I voted against devolution and observing the waste of public funds, the incompetence, the arrogance of those in power in Wales makes me weep. I find it more comfortable to become politically active than to sit and cry.
Well done Annie I don't know how you do this while also undergoing chemo. I think your work in helping others is great. I wish I had known at the beginning of my treatment what I know now. We all need to know what treatments are out there and why we can't have some of them in Wales or worst still parts of Wales. Only continued pressure will change things.
I've just restarted chemotherapy but continuing to think about what should be done about the poor access to treatment and drugs in the devolved administrations. I'm seeing a former colleague at Cardiff Uni to discuss how she led a pro bono campaign to have prisoners' sentences reviewed who were believed to have been unjustly convicted.
I've never been involved in anything like this before but then I've never experienced discrimination of any kind in my life. I think the campaign to improve standards across the UK will be a long one and needs a massive group effort of people who care in Scotland, N Ireland and Wales and a wave of pressure that will remain long after those of us who started it will have the energy to pursue it to a fair conclusion.
I too wish I'd known more when I started this journey. I had no idea I was suitable for Avastin and recent research results have shown it can give an additional 10 months average life to women who were given it early on. I wish I'd understood more about surgery and what was available elsewhere at the time. It's a fine balancing act, us being in the know, vs not worrying people who are new to diagnosis.
The only reassurance I can think of is that patients in England have a choice where they receive treatment. For us there is choice of sorts - move out of Wales, N Ireland or Scotland but that's not feasible for everyone and it's not desirable for anyone.
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Spread of ovarian cancer to the Brain
Post chemo appointment and scan. 
Debulking surgery options 
Ovacome Members Day 2018
