RAIRDA launches survey for patients in Wales - LUPUS UK

LUPUS UK

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RAIRDA launches survey for patients in Wales

Paul_Howard profile image

Hi everyone,

The Rare AutoImmune Rheumatic Disease Alliance (RAIRDA) has launched a survey for patients living in Wales.

The findings from this survey will support our submission to the Welsh Government as part of their consultation on new guidance for services for arthritis and long-term musculoskeletal conditions. This guidance is meant to advise NHS health boards on the way they design services for people with these diseases, including lupus, scleroderma, vasculitis and Sjögren’s syndrome.

Learn more and access the survey at - lupusuk.org.uk/rairda-wales...

11 Replies

I would like to ask all members living in Wales to take part in this survey. The results will shape our feedback for this consultation for Welsh Government. It’s your chance to have your say.

Thank you!

Wendy

Davinal1-UK profile image
Davinal1-UK in reply to Wendy39

Completed. Would like to see the survey findings.

Paul_Howard profile image
Paul_HowardPartner in reply to Davinal1-UK

I will arrange for our consultation response to be shared on the LUPUS UK website and will post the link in here when it is ready.

done.

Pussbella profile image
Pussbella in reply to Wendy39

Survey done but difficult to find the correct box to tick because Survey makes little provision for those who have sought some private treatment at consultant level due to very poor NHS care.

This is relevant because waits for NHS rheumatology are very long in my area of Wales. My GP told me 18 months ago GPs had received a letter from the local health board asking them to limit rheumatological referrals and saying the bar must be set higher.

As a result, whilst acknowledging my blood tests met the referral bar, my GP did not want to refer me on NHS as I was able to pay. I realise how fortunate I am but this private element to my healthcare has potential effects on my treatment. My consultant and I are both nervous about introducing any immune suppression except steroids because it is very unclear whether my GP would/could provide the necessary blood monitoring on an ongoing basis.

I think this gap in the Survey should be highlighted as I know I am not the only person from Wales to travel to the London Lupus Centre.

Thanks so much for all the work you and Paul do.

Bw,

Pb

baba profile image
baba in reply to Pussbella

"whilst acknowledging my blood tests met the referral bar, my GP did not want to refer me on NHS as I was able to pay"

That is disgusting.

Wendy39 profile image
Wendy39 in reply to Pussbella

I managed to get quite big comments in where possible, there didn't seem to be a restriction in the end section, for any other comments, so I added quite a lot there. I also made it clear I pay for my rheumy care.

Fingers crossed with a lot of people responding from all of the RAIRDA charities it will give a good idea of how patients in Wales feel about their care here.

Wendy x

Pussbella profile image
Pussbella in reply to Wendy39

I tried to do the same with extra comments but there were cases when I needed to tick 2 boxes and this was not allowed and questions where no answers were appropriate.

Hopefully if enough people answer truthfully the Welsh gov will realise that in many cases NHS rheumatological care in Wales is inadequate.

Bw

Pb

I also wrote a lot in the comments, like Wendy. I was very truthful about what happened to me here in Wales two years ago, which amounted to terrifyingly bad care.

Thank you Paul. I will complete it now 🙂

Done. I also added lots at the end comment. MB 😊 here's hoping to be listened too....

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