Update on recent developments! Out of remission

Hairobsessed123

Just a quick update ! I have a blood test booked today !

Bad news is I have a telephone consultation with nurse or consultant doesn’t say which not until 15th December!

Tbh I am just at my wits end I haven’t seen consultant since 2021 I have only seen him twice in my journey I want to complain or see different consultant what is your advice ? X

jonr

Do you live in England @Hairobsessed123? Sounds like an odd question I know but I have a reason for asking it!

Cheers,

Jon

Hairobsessed123

Yes I am in England! @jonr Im intrigued!

sorry for late reply 😊

jonr

NP @Hairobsessed123

Have you heard of an organisation called Connect Health? They only operate in England as an outsourcing service for the NHS handling high volume workloads, MSK conditions are one of the ones they handle. They have a very good website with a locator for your nearest centre. Your GP can refer you or you can self-refer. I was referred initially for physio but then for an assessment on my knees. From enquiry to assessment to referral to an Orthopaedic Surgeon to MRI and then referral for a double TKR has taken 6 months and it'll be done privately. Could be worth looking into as they do seem to be a fast-track service if conventional resources are struggling.

Hairobsessed123

Thankyou @jonr !

I have just sent them a message !!! Hopefully I’ll get seen before December !!! Much appreciated!!

Hairobsessed123

@jonr

unlucky for me the place I contacted wanted to know where I was based I just contacted nearest to me about 48 mins away and they don’t cover my area lol

I did ask if any help in my area and she said ask G.p ! I am now waiting for g.p to contact me about appointment for ongoing pain in my groin but apparently that’s 10 days because it’s just a routine appointment I feel like I’m at the end of my tether !! X

jamieA

Hi @Hairobsessed123

I don't know if you know this but PsA affecting your hip joints can cause a pain in the groin. That was the case with me before I was moved onto biologics. They tested me for all sorts just to make sure including ultrasound of my groin(not pleasant) - and a prostate test(extremely unpleasant).

I changed my first rheumatologist. I wrote to him stating that if he wasn't prepared to help me then I wanted referred to another doctor. I also asked my GP to make the same request. I was notified 3 months later of an appointment with a different rheumatologist - no mention of the swap.

jonr

How frustrating @Hairobsessed123. Did you use the locator service to find the one covering your area? There are 206 centres covering England so at least one of them should be right. 2 weeks is a long time to wait to speak to a GP when you're in pain so maybe worth another stab whilst you're waiting?

Hairobsessed123

@jonr she checked whilst I was in the phone she said no centres lol the one I contacted is one nearest to me and she said it didn’t cover my area ! I’m going on holiday tomorrow so I’m just going to take my anti inflammatories and take it easy if I haven’t had a phone whilst I’m away I will get in touch with g.p and say it’s urgent when I get home !

@jamieA I wasn’t sure if it was connected or not it’s been niggling for about 6 months it’s hard to explain I’ll move and all of a sudden it’s uncomfortable I don’t know what I do when I do get pain if I’m twisted or walking sideways lol it just happens and more recently painful in bed being intimate (sorry to much information) but I’m guessing that wud be apparent with hip pain in the groin !

When I do get g.p appointment I’m going to ask if I can go to a different hospital with different consultants I’m not getting the care I need ! They promised me if pain returned they wud see me and sort out meds not make me wait til December !!!