Declined lupus Centre help

[Haylz2109]

Hi all, hope you're all doing as well as you can be. Just thought I'd give you an update on something that went from being so hopeful to now being left to struggle once again. If you know my previous posts just before Christmas I'd had a steroid injection and was waiting to see professor D'cruz in London to try and get a treatment plan or diagnosis which all the funding was agreed for etc to then find out in my appointment with normal rheumatologist that it has been declined as he would not have done anything different than what she has already done.

Now I'm on no medication to help other than pain relief such as cocodamol and ibuprofen, no clue of what is next if anything at all because it seems they are out of options.

I've been trying to get hold of my rheumatologist because for some reason they are not seeing me until April now and I'm already on antibiotics for an unknown reason/flare but no luck in getting them on the phone.

I'm just so upset and disheartened by it all it really makes me question why I'm even bothering going to the doctors yet I'm so ill I can barely function. I really thought this year would be the year I can have some normality with treatment or a diagnosis that would be long term and now instead I feel like I'm back to square one.

Sorry for the long rant I just really don't know where else to turn or what to do, thanks if you got this far.

Hope you all had a lovely Christmas too 💕

[DorsetLady]

How about contacting PALS at hospital after all they are there to help patients…

[Haylz2109 in reply to DorsetLady]

Thank you, I'm not entirely sure what they would be able to do? I thought they were just there for complaints but I maybe wrong.

[DorsetLady in reply to Haylz2109]

Well. It’s always worth asking - they are there to liaise between patient and the hospital if there is an issue…

[Haylz2109 in reply to DorsetLady]

Thank you, I will definitely look into that.

[Kevin53]

you could also ask your GP for treatment plan again. Where abouts are you in the UK? Best wishes Kevin

[Haylz2109 in reply to Kevin53]

Thank you, to be honest when I see my gps lately they usually say it's over their heads and then refer me back to my rheumatologist. They don't usually give me any care plans but my rheumatologist was the one really helping me for the last year it just seems as though they're out of options. I'm in South Wales I did try to go private at one point but the Dr I saw was just focused on sarcoidosis which was ruled out and then never got back to me when I tried to ask for anything further.

[MrsWillYoung87]

Hi Haylz2109,

I'm so sorry to hear of your issues and I understand completely because I've been in your situation myself before.

If you can afford to pay privately, I cannot recommend the London Lupus Centre at London Bridge Hospital enough. I have been with them for 12 years now and I can honestly say they saved my life (Prof. Hughes was originally my consultant until he retired). I'm now blessed with Dr Kaul there, though I've seen several consultants there over the years and they've all been fabulous.

Very best of luck in getting what you need. You're in my prayers.

[Haylz2109 in reply to MrsWillYoung87]

Thank you, its such a struggle prior to a correct diagnosis isn't it ? That was where I was meant to be going as my rheumatologist requested they see me based on her thoughts of me having seronegative lupus, I had the funding granted and everything but Professor D'cruz or someone who handles the requests declined it based on the fact that they wouldn't do anything other than what my rheumatologist has done already unfortunately as in they won't try the next medication due to it being harsher on the body without my bloods showing fully. Thank you I really appreciate that 💓

[Kathflan19 in reply to MrsWillYoung87]

Hi

I just want to add to this because I was going to say exactly the same thing.

I got lost in the system of no one knowing what to do with me for 10 years.

I finally got the money together to go private at London Bridge to see Dr Kaul and I was finally given medication that made such a difference to my life.

He is an absolute expert in the field and actually listens to his patients.

A consultation is around £200 and it was the best thing I did for myself.

Wishing you all the best

Take care Kate xxx

[Haylz2109 in reply to Kathflan19]

Thank you, wow 10 years ? Such a long time. Hope you are doing as well as you can be now 💓 My funding is still available so I might request my rheumatologist to ask if Dr Kaul would take me on but I'm unsure if its the whole of the London hospital that have said they won't see me or if its just professor D'cruz, all she said is he wasn't going to see.me as he would not do anything different to what she has already done ( steroids + hydroxychloroquine) as bloods don't show correct for the markers.

I do have bupa through my work so I may also bring it up with them to see if there's any difference than me paying for it to the funding from NHS.

Thank you, Hayley x

[Dalilatm]

Hi Haylz2109 I'm sorry to hear that you've been so unwell and that your application to see a lupus specialist has been declined. Lupus is different for everyone, but having a second opinion (from a lupus specialist) can help to have a plan in place in order to manage symptoms and spare high doses of steroids.

I run the group in Cardiff, feel free to join our meetings (next online meeting 29/01). There's also a group in Pembrokeshire.

Best wishes

Dalila

[Haylz2109 in reply to Dalilatm]

Thank you, yes that was my hope as my current rheumatologist is already the 3rd rheumatologist I've seen in the past few years for second opinions and she's been the only one trying to help to be fair to her. So was hoping by seeing this other one high up in a specific London centre that they maybe able to provide a care plan or help going forward. Thank you Dalila can you please send me more information on that group I'd appreciate it thanks.

[Dalilatm]

Hi, I'm sorry to hear this. It can be a difficult disease to diagnose, treat and understand, I hope you get to see a good medical team.

For further information about the groups:

Cardiff and surroundings:

dewis.wales/ResourceDirecto...

Pembrokeshire and Carmarthenshire:

dewis.wales/ResourceDirecto...

[Haylz2109 in reply to Dalilatm]

Thank you I really appreciate that. 😊