Patient VOICES Event - Tuesday 2 February 2016

[Whippit]

I'm organising an event for cancer patients to HAVE THEIR SAY to Welsh Assembly Members on Tuesday 2 February 2016.

The idea was to identify 30 patients from different parts of Wales and representing different cancer sites to bring them together as a single group to talk to Assembly Members. So often when things go wrong with cancer provision, or lack of access to drugs patients are on their own with only a sensational media story to underpin their cries for fair access to cancer treatments for the people of Wales.

The event caught the imagination of the local NHS, the local cancer centre and many charities who have been incredibly generous helping out with printing, advice on administration and planning, translation into Welsh, and on how to communicate with government officials and Assembly Members. Their kindness and support has been overwhelming. Not only have they provided advice, resources and will be sharing the cost of catering, but cancer charities from across the United Kingdom will be sending a member of staff to Cardiff for the day with a display and will provide support for their patient.

I have less than 2 months to finish all the plans and there seems an awful lot to do right now. So far I've recruited 26 patients. Several Assembly Members have accepted the invitation to come along and meet patients and their constituents. Invitations to honoured guests have just been sent out and I'm thrilled to have had responses from people in very senior positions in the world of cancer in Wales.

If anyone knows someone with cancer in Wales please tell them about our Patient VOICES Event. It's been very challenging recruiting patients to represent all parts of Wales and people in remote and rural areas really need to have their stories heard. My email for this event is [e-mail].

As I understand it, this is the first-ever patient-led delegation to a Government. I hope in standing shoulder to shoulder we get our message across in the months leading up to our elections and before the 2016-21 Cancer Plan for Wales is drawn up.

The television cameras will be rolling on the day and we've got the media lined up to take a photo shot and publish articles in the papers. I'm still looking for a famous Welsh person to open the event - does anyone know anyone famous in Wales who might be prepared to appear for a few minutes at 11 o'clock on Tuesday 2 February? The Q&A session with the health spokesperson from the four main political parties in Wales will be chaired by Baroness Delyth Morgan.

This has all been a wonderful distraction from the dreary world of hospital visits and the diurnal hopes and fears we all go experience in dealing with our own cancer journey.

Let's hope once we've had our say to our politicians they will listen and take action.

Annie

[LittleSan]

Oh my goodness Annie - you are one superstar! This event will surely be a great success. X X x

[Whippit in reply to LittleSan]

lol - the event might well have assisted bowel movement had I been on chemotherapy!!! That's a polite way of saying I'm slightly terrified but I just have to get on and sort out all the admin and then I'll feel better.

I thought I'd share in case anyone had any ideas about the famous person or contacts with people in Wales with cancer. It's amazing how divided we are as a nation. I flew to North Wales last week to meet fellow campaigners there and hope they'll be well enough to come to the event in Feb. Quite honestly it's as easy to get to Greece as it is to get from South Wales to North Wales.

[LittleSan in reply to Whippit]

Ahaha! I think you're amazing to have done this.

Did you see the Chief Medical Officer on the news today? She has requested an audit into ovarian cancer. She particularlying highlights that longer, more thorough operations lead to greater success rates.

I do have a very tenuous link to a famous Welsh man and have sent out a feeler but it is very much friend of a friend if a friend etc. ....

Sandra X x

[Whippit in reply to LittleSan]

Oh Sandra, that is immense you have contacted your famous Welsh man. I'm intrigued - but also really grateful for your support. You'd think living in Wales for over 45 years I'd have got to meet at least one famous person here. I've sent a cheeky email to Jason Mohammed but haven't heard back and I had no luck with Dr Phil Hammond whose stand-up routine at the Hay Festival inspired the event in the first place. I take the view if we don't ask we don't get.

I have had a few bleak moments since being told I'm now resistant to platinum therapies. It means on average my life expectancy is less than a year. It's at moments you discover things like that you do look back with some degree of resentment about poor surgery hours and the hospital error in not giving me dual agent chemotherapy at first line. It's a poignant moment because I might not have been where I am now had I received the best treatment.

Campaigning and organising the VOICES event has been a salvation and a distraction. I feel at least if I had to be unlucky my rattling of cages and making a fuss will at least have done something for the next generation of women who are destined to follow in our footsteps.

I do hope your tenuous links with the famous Welsh man come up trumps! I can't tell you how much your kindness and support means.

Loads of love xx Annie

[LittleSan]

Ah Annie, I can only imagine how bleak those moments are, as yes you are a step further along the treatment line than myself. I obviously do have frightened, panicky times though so can relate. I could troll out lots of platitudes but you're knowledge is greater than mine - I'd tie myself up in knots! I do believe in miracles (or fortunate suprises) though and I do believe in beating statistics. I do however, believe that we are put on this earth to serve a purpose whatever that may be. If our time is shorter than others then our job is done. I desperately hope you have a lot longer with all that love and energy you exude!

Much love

Sandra X x

[LesleyGreengran]

Wow what a star you are. That sounds wonderful. I've been emailing my MP about a few things including, recently, the idea of making nurses pay for their training. I think I might meet up with him when I finish treatment (not till March) but I'll post on here first to see what another think would be useful to take up with him. Listening to patient's voices properly rather than the very restrictive surveys they give us. Like would you recommend this department - how daft is that?

[Whippit]

I worked at Cardiff University for many years and had close links with the medical school. The School of Nursing had more drop outs than any other course because of financial problems. It's a tough course because the nurses were sent to various hospitals and it's expensive to travel and they worked antisocial hours.

To my mind nurses are underpaid and purely from observation as an inpatient in hospitals I think their working conditions are a disgrace and its totally unfair their salaries have been so restricted for a number of years.

The nursing I receive at my centre is second-to-none.

Annie

[Hidden]

Annie, have you tried Sian Conti the opera singer/tv /radio person. She founded the Welsh Pancreatic Cancer charity because her husband a glam rock musician died from it.

[Whippit in reply to Hidden]

Hi Sboc, thanks so much for this suggestion. I've never heard of a Welsh Pancreatic Society but will check up with my friend who's an active campaigner for Pancreatic Cancer. I have another close friend who has pancreatic cancer and is determined to come to the VOICES event to speak to Assembly Members. It's heartbreaking. They don't often have much time after diagnosis and she's in hospital this week with an infection so it's all very tragic.

It would be wonderful to have an ambassador for that dreadful disease to open the event. I'll chase up your suggestion and will post to let you know how I get on.

xx Annie

[Hidden]

amserjustintime.org Is the charity. This is Sue by the way!

[Whippit in reply to Hidden]

hahaha It's so funny to discover someone online that you know personally!

[Hidden]

Should have said Shan Cothi!