To take DH to A&E

[DontGoIntoTheLongGrass]

I'll try to make this quick as I have a habit of rambling on.
Basically dh wants to be tested for a genetic condition which his dad has which fuses the spine. He has every symptom. Dh is at the point now where he cannot move for the pain and he is getting no sleep because of it. He is on strong meds but they do nothing. An x-ray is required for diagnosis but the doctors will not refer him for one. They give him more pain meds which dont touch the pain.
Aibu to take DH to a&e to try get the x-ray next time he wakes up in the night screaming in pain? Sorry if this is a stupid question but I know the consensus on mn over wasting the doctors time at a&e. I'm just struggling to see my DH in so much agony every day.

Thanks for all the advice and links. I've been reading them and showing to DH too. I didn't realise so many people had this condition or that know people with it. Sorry to all those who have this condition or have a loved one with it. And those being diagnosed still I hope it comes back with good news . Hopefully the advice on this thread will help others in the same situation.

Dh slept a bit better last night he says. The new mattress we bought this week is higher up so he was able to get out of bed a bit better this morning and the new meds gave him a better nights sleep even if they have made him completely loopy. Going to have to keep a eye on him

hope all goes well OP.

btw what is in the Long Grass?

Raptors! Sorry Jurassic Park fan here

oh! I have seen the first one so I don't know why I didn't remember that.

So update for whoever read this. DH now has received a referral through post for rheumatologist. It says to go online and book one of 4 hospitals. So we went online to book and it's over 60 days away. This is a ridiculous wait. Is this normal? The gp said it was an urgent referral. He rang them as it says for the earliest one you need to ring the hospital instead. They said on phone they will send an appointment by letter? DH said can't you just tell me the date, they said no.

So instead I rang our local private hospital who said they would let us book a self pay appointment for £150 when we got the referral. I want to do this as they will see dh this week if so.

Now my question is when we go for this consultant appointment privately, when they decide what they want us to do such as blood test or xrays do they then send us back to the nhs or will they try keep us paying private fees which could go into the thousands. I'm hoping they will say yes we think it's this and the nhs will listen to them and get him in urgently with nhs treatment. I would go privately tbh but I'd have to sell my kidney

Dh does have a health care through work but they will not let him opt in until June.

I saw a consultant privately for breast lump, the wait was six weeks, even though the target for our health board was three weeks. My Mother, Aunt and grandmother had breast cancer so I was somewhat anxious. I paid £150 for the visit and saw a consultant within 4 days, was reassured it was nothing sinister, but he would refer me for a mammogram on the NHS, that appointment came through within a couple of weeks. After the mammogram I then walked down the corridor saw another consultant who explained to me what she believed had happened. Underwired bras, quite common apparently.

There is no pressure to keep on paying. I don`t know how it works if insurance pay. I might add I now pay insurance which thankfully I have not needed.

GP practices don't do hospital bloods whether private or NHS (where I am). The consultant who is interpreting the bloods needs to order them whether private or not. The main reason being that whoever orders the test should receive the result to confirm the treatment plan. Adding a GP into the process (they are not funded for this work) not only causes delays but puts financial burdens in the wrong place.
And, Yes, 60 days wait for an urgent referral to a busy speciality is normal. Where I am it is over 100 days for Neurology...

Now my question is when we go for this consultant appointment privately, when they decide what they want us to do such as blood test or xrays do they then send us back to the nhs or will they try keep us paying private fees which could go into the thousands. I'm hoping they will say yes we think it's this and the nhs will listen to them and get him in urgently with nhs treatment.

If you remained private it would be at enormous cost as it's a chronic disease (if your husband is diagnosed). But if you want to take the results to the NHS I imagine you would still have to wait for an appointment.

Your husband has my sympathy. I was diagnosed with a rheumatological disease after an acute onset. Thankfully I was seen pretty sharpish as I had a new born daughter and they weren't quite sure what was going on. Nothing can describe the pain, it's awful.

I have sympathy but I don’t think 2 months is that bad. Rheumatology clinics are absolutely heaving and even if a GP labels it urgent, they may triage the referral and not agree. Even if this does count as urgent, I think you should at least book the appointmentment. Even if you start privately and then move onto the NHS, there will still be a wait, as it should be.

My honest opinion is that I’m not sure what you will gain from a one-off private consultation. They will want to do tests. They won’t be able to see or tell much based on symptoms without any bloods or imaging. Sorry, probably not what you want to hear. I am a long term veteran of the rheumatology world and I did start off privately but I was insured.

I’d go private. That is way too long to wait. Sometimes you have to take matters into your own hands. Good luck.

I agree with booking the NHS appointment so you’ve got it in the bank and see how it goes. If your DH’s pain becomes unbearable you can go private at that point. When/if you do, talk to the consultant about being referred back to the NHS for treatment. It won’t be a problem.

I honestly don’t think people realise that unless you can afford testing, often going private is not helpful especially with a potential rheumatological condition. The only thing a one-off consultation could do is maybe have him given stronger pain relief but a GP could do that and that doesn’t cost the family £££. Also, going private doesn’t mean you queue jump. He’ll still have the same wait. It’s fine if you’ve been able to start private treatment but this family can’t afford that. My advice is wait for the appt, it really isn’t a long wait, and see the GP for a decent painkiller.

60 days is 2 months.. Practically a miracle for urgent referral were I work.
If you go privately, you do not effectively queue jump with your results in hand.
You still will wait the same length of time as everyone else who is also in pain and struggling.
Sorry to sound harsh op but it does not work the way most people think. Your private consultant will say your dh needs x-ray and bloods and poss mri.
You either than pay for these and see the consultant with results for possible diagnosis, all at your expense. Or when you say you have NHS appt or NHS referral and you can't pay for private tests the consultant at best will say he thinks it's xyz (poss alk spond) and you will need to wait for your NHS appt.
Or he may agree to order the tests on NHS... But you honestly will not get the follow up appt any quicker than everyone else.
At worst the consultant will think you are trying to queue jump and just say go back to NHS queue.
Most consultants I work with dislike patients paying for one off appointments thinking they will get a diagnosis eyc all sorted and then join NHS queue for follow up.
I am sympathetic to your poor dh being in pain, but As is not a life threatening condition such as a cancer and 2 months is not a long wait

A chronic condition like the possible AS here is FAR better managed by the NHS.

Pain relief can be uptitrated by Primary Care.

Book NHS, get your date then ring up the secretary and say you will acccept cancellations.

Unfortunately Ank Spond is not going to be a great condition for self-paying as you don't just have the consultation, but any X-rays, CTs, bloods etc. It will be 2 consultations at least, one to see you, order tests, the next to discuss the outcome, a third to see how he is going .... costs rack up v quickly.

My DM occasionally sees her rheumatologist privately when she is frightened as the NHS clinic is heaving but thankfully her condition (giant cell arteritis) just needs his opinion and nothing else. You can't really dip in and out if you end up on ££££ drugs which GP can't prescribe you will need to be on the NHS system and stick with it.

One thing I just recalled, if you go privately, the consultant can sort out the right pain meds prescription then and there, then at least you get some relief whilst you wait for the NHS to kick in. Folk say two months is good but help with 60 days of pain would be wonderful.

Thanks alot everyone again for your responses. Dh spoke with the hospital and it's now a 3 week wait for the appointment. Not sure what changed to it being 60 days or whatever. We're currently waiting on the date through the post so fingers crossed.

Dh is now adamant he doesn't want to pay private. It'll cost money which he isn't prepared to use, we're currently saving multiple weddings next year, one begin abroad. He's decided he can wait 3 weeks for the appointment. He rang doctors for another prescription today as he's nearly out of his medication. The meds are helping alot he says and so is the new mattress so at least he's started getting a full nights sleep again which is great.

Also gone for the x-ray this morning so hopefully we'll have results back in a week for that. I'll keep updating you all. I do really appreciate the responses though

Good outcome. Pleased for you both

Your DH talks sense. Save your money and let the NHS take care of him. Things are sounding better already, hope they continue to improve for you both.

Hi - sorry if what I’m saying has been repeated above (didn’t have time to read whole thread). Glad the tablets are helping - but make sure if they are NSAIDs he has been prescribed stomach protectors too. I wasn’t and ended up with stomach bleed and in a whole other pile of difficulties.
I would also reccomend writing down a few notes about how bad things have been to take with you to the apt. Often I walk out of mine and think ?!&@ forgot to say x or y. Especially if they’re rushed etc.

Ask for a referral to nhs Physio too.

Good luck - I hope things become a bit easier soon.