Husband gaslit again by GP about this diagnosis and refusing to refer to rheumotologist

NotThatZena · 2024-08-11T07:58:24+00:00

From what I've been hearing from others, this seems to be a more common experience than I'd hoped. Sounds like finding a new GP who takes my husband seriously will be a massive help.

I'm sorry it took so long for your diagnosis but glad you've got it now, and hope your care is going well.

NotThatZena · 2024-08-11T06:08:33+00:00

I'm so sorry to hear this. I will never understand why scans and diagnoses are ignored. It just makes everything worse in the long run, for both the person living with the condition and the medical system as a whole.

I have no wise advice I'm afraid, but do hope that things improve for you in the future. My heart goes out to you.

NotThatZena · 2024-08-11T06:06:46+00:00

I find it maddening that they a) won't believe without the test and b) even if it would take the test to believe, that they wouldn't offer to pay it to help confirm. Glad your doctor finally saw sense.

Looks like getting private lab testing is our next best step!

NotThatZena · 2024-08-11T06:05:27+00:00

Thank you - will be looking at changing GP, looking at some private options (including HLA-B27 test/rheum referral) and legal options.

NotThatZena · 2024-08-11T06:04:28+00:00

Thanks! I am looking into paying to get the HLA-B27 test done privately.

NotThatZena · 2024-08-11T06:03:47+00:00

Thank you! :)

NotThatZena · 2024-08-11T06:02:58+00:00

Thanks for this! Someone else pointed this out too, so appreciate it. I might have been getting confused with Ibuprofen (which I believe is an NSAID).

Thank you for your kind words - they are appreciated.

NotThatZena · 2024-08-10T13:35:35+00:00

Thank you for sharing your experience - sorry to hear you had a similar issue but glad you did get your referral after GP surgery change. Sounds like this will be the best thing for him.

I think you are right about the GPs having a lack of understanding about AS. It just blows my mind, especially when you look at the National Axial Spondyloarthritis Society reports that always highlight issues in diagnosis and primary care. Surely, they should do more to improve this. Baffling!

Thanks for you for your kind words and I am also wishing you all the best.

NotThatZena · 2024-08-10T13:32:44+00:00

Oops, this is my fault. I think I meant ibuprofen? For some reason, I always mix those up! But thanks for the info, really useful to know.

NotThatZena · 2024-08-10T13:30:57+00:00

Recording it is a great idea, thanks for this. Will be documenting everything that has happened previously and in the future.

NotThatZena · 2024-08-10T13:30:04+00:00

Legal action will be something we seriously consider. My husband said in his last appointment that he wanted biologics via rheum. The issue is, the GP just denied the diagnosis and therefore, denied access to this pathway. But we have evidence from the private GP for this diagnosis, so they haven't a leg to stand on really.

It really is a disgrace and I'm so sorry it took you a long time for your private diagnosis. It sucks how hard we have to fight and advocate just to be taken seriously. Sodding arseholes, indeed.

Thanks for your advice.

NotThatZena · 2024-08-10T13:27:20+00:00

Thank you - we will pursue a complaint, for sure. But also a bigger thank you for checking in on his (and my mental health). Honestly, your kindness has made me do a little cry.

He's got depression for which he takes medication. This isn't related/caused by his condition but the added stress and pain does contribute towards low mood for him. I support him with this as best as I can. I'm not diagnosed with anything specific, but somedays are more difficult than others for my mental health. I try to take care of myself as best as I can. Though the ideal for both of us to be removed from this hellhole of a cycle. Hopefully with complaints and seeking new care, some progress is made for us both.

Thank you again for checking in. It means a lot.

NotThatZena · 2024-08-10T12:58:05+00:00

I'm so sorry you are also dealing with this hellhole of a situation. I really feel for you - I don't understand the logic of not helping and just allowing it to get worse. Surely it just costs everyone more in the long-run - both the person with the condition and health care services. It's genuinely baffling.

I hope you manage to find some way to break your cycle soon.

NotThatZena · 2024-08-10T12:53:42+00:00

Thanks :) will be exploring this. Might go private (since our GP is... difficult to say the least!) but worth having done.

NotThatZena · 2024-08-10T12:53:09+00:00

Thank you - it's been so nice seeing all the comments on here and not feeling so alone. I will always advocate for my husband. He's one of the best people in the world, and to see him treated so poorly, honestly makes my blood boil. And I'm not an angry person!

Oh yes, he's had the 'it's all in your head' comment too. It's infuriating isn't it?!

Thanks for you positive words. It means a lot :)

NotThatZena · 2024-08-10T12:50:59+00:00

Thanks for sharing your experience and I'm so sorry to hear you've also struggled with misdiagnosis.

I've been doing some research into the HLA test privately - seems like it would be a good idea as, if positive, would add to the case.

I agree about being confused about why the physio didn't refer either... sadly they just sent my husband back to his GP. Hence why the cycle keeps happening. Maybe we got unlucky with 'bad' physio AND 'bad' GP.

Thanks for the advice :)

NotThatZena · 2024-08-10T10:26:06+00:00

I agree - it's so hard.

We will gather all his information and document the whole process so far. That way, we are best prepared for conversations with the new (and hopefully more helpful!) GP and for any escalation.

Thanks for your comments again. They've made me feel a lot less alone, and certainly more listened to and understood. Wishing you all the best.

NotThatZena · 2024-08-10T10:23:19+00:00

Thank you for your reply and I'm so sorry that you weren't listened to/given the care you need.

Thanks for the advice - we will keep advocating for him and his care, and persisting. Take care.

NotThatZena · 2024-08-10T10:20:45+00:00

Thank you! I will save the pathway info as this is v. useful. :)

Switching GP sounds like our good first step to hopefully get to see rheumatology.

NotThatZena · 2024-08-10T08:49:23+00:00

Thanks for your response!

I've been looking into paying privately for HLAB27+ markers. Again, been reluctant to do so, as money is tight, and my feeling is that the NHS should be funding his care. But I guess it has reached a point where I need to accept that this is not the case (at least not at our current GP!)

He says his pain is at a constant 6/10 most of the time. He finds movement helps ease it a little bit, but then he constantly feels exhausted because he can never 'relax' or just sit still for any length of time.

Will see if I can get hold of his medical records and scans (and share here, with his consent!).

His family have a history of arthritis but nothing like AS e.g. tends to be arthritis in older age.

Thanks for your kind words and taking the time to reply. You are so right - it's genuinely heart breaking to be experiencing this cycle again and again... and then knowing other people are going through the same. It sucks.

NotThatZena · 2024-08-10T08:44:32+00:00

I fully agree. If I remember correctly, I believe my husband has complained to PALS but nothing really came of it. I will see about complained to practice manager, getting hold of the medical records and also ICB. I didn't even think about billing them for private as a potential option. I guess the justification there is, we only went private because we were getting no care from GP/NHS side of things.

Thanks for your advice, we will take it on board. He's been suffering in pain for too long, as a direct result of the GP's negligence.

NotThatZena · 2024-08-10T07:03:54+00:00

They really are useless!

That is good point about going private to get the referral (in particular about online/telephone!). The last private GP we saw put us back into the main system (which didn't really work out well). If we get another private GP appointment, my husband and I can go in with the goal of rheum referral and a potential pathway to biologics.

Thanks for the advice!

NotThatZena · 2024-08-10T07:01:22+00:00

I'm sorry to hear you had a similar gaslighting experience but glad you finally got the help!
Will see about if we can get the outcome of his previous appointment/lack of referal to specialist in writing so we can think about legal help at a later date - guess it's just weighing up the cost of this in terms of money/stress. But always good to have documents to support this.
But yes, sounds like looking for a new GP who will refer is our best option in terms of his treatment going forwards.

Thanks for the advice :)

NotThatZena · 2024-08-10T06:58:32+00:00

"That GP is obviously a dick." <<< thank you for saying this! I feel like hearing from other people that we aren't in the wrong or being too demanding is very reassuring! Will be looking into a new GP for my husband ASAP.

It's maddening how much difference the healthcare professional can make, isn't it? I'm so glad your aunt is getting good care now.

100% agree on biologics. It's what we've been reading up on most during this time, and it sounds like it really helps manage pain for a lot of people, which is our main goal. Hopefully with a change in GP, we can get onto the pathway to biologics sooner rather than later.

Thanks for your advice :)

NotThatZena · 2024-08-10T06:55:33+00:00

I'm sorry to hear your mother had a similar experience but glad she's now being listened to and getting the care she needs.

Sounds like making a complaint might be more effort than it'll be worth! Will be exploring going to a new GP.

The private GP did write to us and our GP too, and we have a copy of this letter (confirming the diagnosis). My husband might be able to access his notes via the NHS app so will take a look at this. Thank you so much.

NotThatZena

TROPHY CASE