No hope of getting this referral not sure what I ... - LUPUS UK

LUPUS UK

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No hope of getting this referral not sure what I can do!

Loopyloo43 profile image
11 Replies

Well after getting my gp to work with me and he wrote to the consultant in the Maelor hospital and asked him to fill in this form that would request a second opinion or to be referred to Liverpool to be seen in there lupus clinic he refused and sent it back to the go, so am at loggerheads as your what I can do! I have got my mp involved and she doesn’t know as yet that this has happened, I will be making a complaint to the case manager there this coming week . There is only one consultant there and this one is as rude as you can be or maybe it’s just he doesn’t like me questioning him and saying that there is a difference in drs some specialise some don’t like he hasn’t and has come from a orthopaedic hospital !!

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Loopyloo43 profile image
Loopyloo43
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11 Replies
Spanielmadlady profile image
Spanielmadlady

Keep pushing keep asking.i had a respiratory dr who didnt like being challenged so I told him to send me somewhere else.contact PALS at the hospital and see if they can help x

PMRpro profile image
PMRpro

You COULD try the legal complaints department - who have clout, PALS don't.

Or move house ...

Loopyloo43 profile image
Loopyloo43

Thankyou for the replies this has now been going on fir 3 years almost he sent the request back at the beginning saying it was upto the go and I didn’t question it so now I know he totally dismissed it even though he said at the time he didn’t gave a issue about it so basically fobbed me off because I didn’t know? It’s so so draining and all you want is drs who knows there field nothing more and yet we are made to feel we’re asking for something alien ?

Muff20 profile image
Muff20

Did the consultant give a reason for the refusal? There's a few things you could do. You could go to pals at the hospital but if the consultant is not interested you might not get any where. Is there another hospital/consultant you can try? Can you afford a private appointment with someone else? It's so hard, I have had a 7 year fight to get treatment for many things. 3 different rheumatology consultant referrals before getting an answer. At the same hospital. Thyroid I had to pay privately, then transfer to Nhs. Keep trying.

CecilyParsley profile image
CecilyParsley

Why are Wales so bad at this? It makes me so angry for you. I would definitely write and ask to have his reasons for refusing a second opinion. Have you contacted your Assembly Member? Vaughan Gethin? I really hope you can get your referral xx

Kevin53 profile image
Kevin53

Vaughan Gethin just passes the buck back to BCUHB. Your two Assembly members are worth trying. Your local one and your regional one. Best wishes Kevin

Loopyloo43 profile image
Loopyloo43

Thankyou for the replies I do have my local AM involved . Not sure if this will make any difference but this is just a dreadful situation fir all of us concerned that this can just be dismissed by a consultant and come back fir them unless we make a fuss as if things are not hard enough we have to battles with these consultants ones whom it seems don’t like us questioning them and have there egos hurt ?

Kevin53 profile image
Kevin53 in reply to Loopyloo43

The AM should help because health unfortunately is devolved in Wales. Best wishes Kevin

Ceri-NorthWales profile image
Ceri-NorthWales

Oh LoopyLoo, I feel you anger and frustration. I am in EXACTLY the same situation. 9 months on from bein diagnosed with SLE on Oct 11th, 2019 on and STILL no rheuamtology care. BCUHB are incapable of any form healthcare. Maelor worse still - they killed my dad. But that hospital is grossly underfunded and under mangement that are better off going back to nursery.

I had an IPFR completed to access healthcare at the Countess. Foud out today that the have rejected that. I did ahve another IPFR completed to access Manchester Centre of Excelelnce That was about 6 weeks ago and I have still heard nothing. What is it with health professionals not giving two hoots.

It's only an incurable and progressive disease that destroys every organ of the body. Nnot like its anything serious or anything.

I cannot stand the pampered public sector .Allergic to work, 100% job security - even if you lie to the concerns team. And failure is met with the 3 P's - Praise, Promotion and Payrise.

Loopyloo43 profile image
Loopyloo43 in reply to Ceri-NorthWales

Hi ceri thanks for your reply , I resolved myself to having Rhuematology cons. It his decision not to help and as he’s the only one there I don’t have a cat in hells chance of going any where, am not feeling well right now so just riding the wave so to speak ty jus virus that’s about usb helping us maybe I’ll get to hear from Beverley party -Jones the local am but whet ever gut now am done with fighting for care and app you would think I was asking for something like gold?:/ you take care x

Ceri-NorthWales profile image
Ceri-NorthWales in reply to Loopyloo43

It's easier to find gold. Hell, it's easier to win the euromillions jackpot than get healthcare in North Wales!

The rheumatologist at Glan Clwyd is crap and there is no rheumatology department, no aftercare and as always, not all treatment options are available - such as infusion therapy. Wales has no centre of excellence and no lupus specialists. We have a very hard time here in North Walse, as all that is around to see are brickwalls. In 12 onths, I have put in 9 PALS complaint, a complaint to Welsh Ombudsman and a further two complaints are going to the Ombudsman. Unless you are in North Wales, no one knows or can understand how bad things are here.

Oh and look at this link for how little covid19 is in hospital in Wales - gov.wales/nhs-activity-and-...

Scroll down to 'reports' and opent he PDF. Lots of graphs shows how little covid19 is in Wales hospitals. I have included one of the graphs in a post I have put up earlier. I am so sick of covid19 being used as an excuse for everything - especially for medical negligence. There is NO excuse.

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