Patients: Have Your Say - Dweud Eich Dweud

Patients: Have Your Say - Dweud Eich Dweud

Yesterday was a pretty momentous one for cancer patients in Wales. We held our first patient-led event to speak to the Welsh Assembly about cancer care and the patients' role in the design, commissioning and delivery of the service.

Here is a photo of Mark Drakeford, the Minister of Health, Assembly Members and a few of the delegates at the event on the steps of the Welsh Assembly.

Over 160 delegates massed at the Pierhead Building in Cardiff Bay to 'have their say'. There were 48 cancer patients from across Wales, NHS staff, 30 charities, Chair of Velindre Health Boards and as many as 36 Assembly Members.

Our story was shared on Radio Wales Morning Programme, there was a 52 minute interview with cancer patient/campaigner from North Wales, Irfon Williams, on the Welsh medium radio in the afternoon, and the VOICES event was the first item on the 6 o'clock ITV Wales News. It just goes to show the degree of interest in cancer care in Wales and the need to get greater patient involvement.

The Speakers were, Dr Tom Crosby, Clinical Lead of the Velindre Hospital and Director of the S Wales Cancer Forum, two patient campaigners - Annie Mulholland facebook.com/groups/OneVoic...

Irfon Williams facebook.com/groups/www.haw...

and Annwen Jones, CEO of Target Ovarian Cancer

The Q&A Session with the health spokesperson from our four main parties was chaired by Baroness Delyth Morgan:

Vaughan Gethin, Deputy Minister of Health for Wales, Welsh Labour

Elin Jones, Plaid Cymru

Kirsty Williams, Welsh Liberal Democrats

Darren Millar, Welsh Conservatives

We have every expectation this will be the first of many more similar events and a huge step towards greater co-operation and trust between various stakeholders, and most importantly a boost to patient empowerment.

There was a rapt audience, standing room only for the Q&A Session, 5 camera crews, and a posse of reporters and journalists from our media here in Wales and The London Guardian.

It was the sexiest cancer conference ever ... and we did it in Wales!

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23 Replies

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  • Well done Wales...not before time...here's hoping you get what you've asked for xxx

  • Well Done Annie:)

    I saw you on the local news last night, you were fab!

    Thank you so much for all the work you do in raising awareness in Wales,

    Hope you are okay don't know where you get your energy from....

    You are an inspiration to us all

    Much Love

    Andrea xx

  • My energies are depleted these days and it's time to hand over - but hopefully not to more and more campaigning in Wales. I made a plea for all the stakeholders to work together putting the patient voice at the heart of service planning, commissioning and delivery.

    We had a vision for the event, for the patients, the clinicians and the commissioners to get together in the same room and have the same conversation. We achieved it yesterday and if we can take that forward and embed the principle in Wales we won’t have to worry that decisions about our health service are made behind closed doors.

    If successful, there would be no need in future for patients, their families and their supporters, to get up and campaign in an effort to put things right. We can concentrate on raising awareness and stopping women suffering and dying as a result of this disease.

    xx

  • Well done Annie and well done Wales

  • Huge congratulations Annie - what an achievement. You must feel very fulfilled.

    Hugs, Beth x

  • PS If there are links to any of the coverage it would be great to see them. x

  • Apparently ITV Wales Newsnight doesn't have a link, but the event will feature on a BBC Wales documentary which should be aired on 8th March which is good timing for Ovarian Cancer Month.

    I'll post up a link if anyone's interested. xx

  • Hi Annie,

    Yes you truly are an inspiration to everybody on this site. And yes please provide the link.

    Gwen

  • You're all far too kind. Every single one of us on the site is an inspiration and more importantly a friend. If I've done something that's been helpful it's because I've enjoyed doing it and I seem to have a skill set that brings it all together. Others do other equally important, and more important things. They might just be less visible.

    I think we need another post for everyone to share what they're doing. It's a collective thing and we're all part of it. xx

  • Fantastic achievement, you are a truly inspiration woman, diolch yn fawr am popeth chi'n gwneud 😊 x

  • That was a great idea and a wonderful event Annie. The NHS needs this and so much more. Bleak despair after visiting two sick friends, neither of whom should have been discharged but both were because of pressure on beds... Vx

  • It's tough visiting friends but I know they will have appreciated your visit.

    The event is something very positive about devolved health care. In Ofsted speak, it's made me reflect a lot on whether the good outweighs the poor or vice versa with regard to devolution. xxx

  • Massive congratulations Annie. Amazing to have pulled this off. X X x

  • Well done Annie. Please do share the links as I would love to watch it xo

  • Me too please post the links. Well done it is one thing to have a vision but another to see it through! Xx

  • It's one of those things that just happens really.

    I said above 'we'd had a vision'. I'm afraid the vision wasn't mine originally. The idea cropped up over a glass of wine and a packet of crisps in a bar back in October. I'd met with a campaigner for Pancreatic Cancer. She said there should be an All Wales patient conference and when I asked who should organise it she said 'you'.

    I tease her now and have accused her of slipping a hallucinogenic drug into my wine that day. She apologises and says the next time she does she'll be more careful not to give me an overdose. lol xxx

  • Hi again Annie,

    Ha ha, I like the story! Having said that, you and others like you are such an inspiration, rallying us all to the cause - not everybody has the confidence to get "stuck in" like you have. I wish you well!

    Gwen

  • Congratulations Annie and all your colleague campaigners! xxx

  • Just fantastic achievement, Annie. Time, now, to take care of yourself by the sounds of things. Hope the treatment brings a good outcome. We will all be interested to hear from you when you are well enough again. Take care.

    Yes, please do post up the link for the March 8th TV slot.

    L xx

  • We weren't aware of the Mirror reporters at the event - but it has appeared today in the Mirror online.

    mirror.co.uk/news/uk-news/c...

  • Hi Annie

    Just watched this clip and can I say how well everyone spoke and in particular how well you are looking.

    Keep up the good work! I'm going to see if I can do some fundraising at work next month as well as raising awareness.

    Don't know if you are aware I am now covering for a colleague who was diagnosed with breast cancer just before Xmass, I 'm sure my team will be on board.

    Love

    Anne xx

  • Dear Anne, I haven't heard from you for ages, so didn't know you're doing some cover at work. I hope that's going well.

    I did a little fundraiser cake sale before I left work. It was fun and raised money too. I'm thinking of doing a cake sale in OCAM - for the Minister of Health for Wales. He's going to make an exciting announcement about ovarian cancer on 9 March and has asked me to get involved in a do along with the local cancer centre.

    We should start a new thread about fundraising and awareness raising for OCAM. It's always fascinating reading what everyone's up to

    xx Anne

  • Hi Annie

    I haven't been looking at posts quite so much as, on Monday, I will actually have completed a whole year at this state run nursery- I only accepted for a month and it's just gone on and on!!

    Not sure where I've got the energy from but I expect it's from the little people!!

    Last March the head was very happy for me to leaflet the staffroom so I don't think it will be a problem to raise a little money this time. The school is always supporting something or rather. On Friday it was 'Numbers Day' for the NSPCC and, despite being quite a small place, they raised £250 odd.

    Hope your event goes well,

    Love

    Anne xx

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