Lupus care in Wales

[Kevin53]

This is a little bit of a straw poll.

NHS Wales will shortly; hopefully, be running a consultation on Lupus care in Wales.

I would be grateful for feedback; good and bad, from the HealthUnlocked Community in Wales.

Best wishes

Kevin

[maggielee]

Great count me in...thanks K. ML

[CecilyParsley]

I would be interested please Kevin.

[WinterSwimmer]

Should we message you to give feedback?

[Kevin53]

That would be very useful. Best wishes Kevin

[Ceri-NorthWales]

That'd be brilliant and much needed. I'm very interested in this. Not had a good experience at all and am asking to transfer to Countess - which is actually a closer hospital. I am with occupational therapy there next week, set up by a physio I see there due to a wrist injury. This is far more help and support tthan Glan Clwyd have given me, who have even refused me appointments!

[Hidden in reply to Ceri-NorthWales]

Look at the good you helped bring about in a short time! You and Kevin53 👏👏👏👏👏👏👏👏👏👏👏👏

[Wendy39]

Kevin

Count me in!!!!!!!

I think you have copies of most of my correspondence.

I do also have 16 anonymous statements from my group that were used to support our group complaint with the Hywel Dda Community Health Council.

If there’s anything else you need, you know where I am.

You know how strongly I feel about this!

Best wishes

Wendy

[Wendy39]

Kevin

I have shared this with my Support Group Members, by Facebook and email.

I really hope you get a very good response.

Do you think Sam Dentten at the Community Health Council could add anything?

Best wishes

Wendy

[Wendy39]

Dalilatm

You and your lovely members might want to take part in this. xx

[LesJames]

I moved here from Kent 7 years ago and was on a Biological (Humira) when my prescription ran out I was told I could no longer have it as the then Dr could not find evidenced my illness despite a Humira working wonders. I am now back on steroids and methotrexate which are not controlling my illness.

[Wendy39 in reply to LesJames]

I don’t know anyone else on Humira here in Pembrokeshire. It doesn’t seem to be an option open to us. 😢

[LesJames in reply to LesJames]

And I might add prescribed by a top London Consultant from St Thomases

[LesJames]

Done

[Niblo]

Count me in please

[Wendy39]

Kevin, some of my members are asking when you need people’s experiences by? Some have appointments this week coming and would like to provide an accurate up to date “statement”. Wendy

[Kevin53 in reply to Wendy39]

It’s probably be going to be March. It’s good for folk to prepare.

[Wendy39 in reply to Kevin53]

Great. I’ll pass that on. Please keep me posted.