LUPUS Specialist Nurse

[Tripitaka]

Hello to you all,

I live in South Wales and I am really keen to talk with a nurse who specialises in LUPUS. I am aware of other specialist nurses but there doesn't seem to be any LUPUS nurses at the Rhuemy department at my local hospital in ABMU health board trust.

Anyone with any experience or advice on this please?

Thanks ever so much.

Tripitaka X

[Kelfreem]

Hi, i just thought I'd reply as they are the same local NHS trust that I am treated by. We haven't got a specialist rheumatologist nurse in this area as far as I'm aware. However I also get seen by a consultant at London Bridge lupus centre which I find extremely useful. You can always private me if you want to talk or if I can help from my experiences x

[Tripitaka in reply to Kelfreem]

Thank you so much Kelfreem for your reply and kind offer X I shall be in contact soon!

[Wendy39 in reply to Kelfreem]

I'm very interested to read this. I live in South West Wales and come under Hywel Dda Health Board. I have a consultant rheumy & Dermatlogist looking after me - at 2 different hospitals. But no lupus nurse. Also, I have enquired about a referral to London for a second opinion and been told it's not my right and also difficult because of funding differences between England and Wales.

[Kelfreem in reply to Wendy39]

Hi wendy38, i think I may have met your consultant at one point as I'm on the border of the hospitals, I'm no longer under him. You are right there isn't a specialist lupus nurse in this area that I'm aware of. There are rheumatology nurses, but not lupus nurses. That particular rhumy i thonk your under seemed to think I shouldn't be on certain treatments unless I had end organ damage!!. Luckily I was under the Morriston doctors though so it didn't matter, and they've been brilliant to be fair. The doctor I see in the London lupus centre I pay for (I was told at the time that I could self refer, but my gp referred), but I wouldn't have it any other way. He is fantastic and very pro active about preventing damage, keeping me able to do some work and quality of life. I personally think when you've got such a difficult condition that we need to be seen by the specialists in the field who's knowledge in lupus is worth every penny as far as I'm concerned. I've been under my doctor for 2 and a half years in london now and I would never now think about not being under him. I do see him every 3 months which is a bit of a journey, but it's worth it. If I can be of any more help, let me know. Maybe we could arrange a local bus journey for us all lol x

[Tripitaka in reply to Kelfreem]

Thank you very much for your reply. A day out to London sounds fun! 'Lupies does London' lol x

[Wendy39 in reply to Kelfreem]

Kelfteem, out of interest who do you see in Swansea? Thanks.

[Wendy39 in reply to Kelfreem]

Hello. Would you mind telling me who you see there? Thank you. Wendy

[Wendy39 in reply to Kelfreem]

Thank you so much for your fantastic message. So kind of you to take the time to reply in so much detail. It's really helpful. I will reply tomorrow. X

[Tripitaka in reply to Wendy39]

Thank you for your reply - I am at the 'official' beginning of the lupus journey so it will be interesting to see who becomes involved in my case. Yes, the funding differences between England & Wales!!

[whisperit]

Hello Tripitaka,

I'm a patient of Aneurin Bevan Health Board, which does have a Rheumatology Specialist nurse service. They have a helpline which operates 3 mornings a week ( I think it's Monday, Weds, Thurs 10-1). I guess that you should be a patient of theirs to use it, but perhaps they would be worth a call with your query?

The number is 01873 732046.

X

[Tripitaka in reply to whisperit]

Thank you whisperit for your very helpful reply x I shall ring them definitely!

[Nikki246]

I also go to the London Bridge Lupus clinic at Guy's Hospital. They are worth a ring as I think you can talk to them even if you aren't a patient. If you google it I think you can email the nurses too.

[Tripitaka in reply to Nikki246]

Thank you so much for your very helpful reply

[Tripitaka in reply to Nikki246]

Thank you so much for the info

[willowwag]

Hi Trip what Hospital are you going to as I live in South Wales and have a Lupus Nurse as well and my Consultant.

[Tripitaka in reply to willowwag]

Hi Willow, Neath Port Talbot Hospital within ABMU health board trust. It seems some have a Lupus Nurse and others don't.

[willowwag]

Hi There Trip, I am with the Royal Glamorgan in Llantrisant that is crazy the Port Talbot still doesn't have a Lups Nurse is there a way to transfer to Bridgend so that you can get the better care with your Lupus.

[Wendy39]

Hello. I know this thread is now a little old but I am now in the position of having to pay for a private appointment with lupus specialist. I'm thinking if I am going to do it, I may as well travel to London to the London Bridge private clinic. Any recommendations? I see my GP on Monday and will be asking her to do the letter then. Thanks in advance. Wendy