To be scared to death that my OH is seriously ill?

[maz2003]

My OH developed what looked like an eye infection the week before our twins birthday in March. He refused to do anything about it that week but halfway through their party decided to seek advice from the pharmacy (leaving me to deal with the party.)
That was 22 weeks ago.
His whole right face is swollen as is his nose. The swollen area is very red sometimes verging in purple. He has seen his GP ( not the same surgery as me) and she has been consistently hopeless. He has had no blood or labs done. He is a smoker ( smoked 30 a day for 45 years... he is 58). He told her he quit 6 years ago but he didn't.
He has been seen by ophthalmology who say it's not an eye issue. They refused to say what they thought it was. They suggested dermatology. It's taken 8 weeks to get a dermatology appointment.
I am very concerned that this is very serious, however he is old school and thinks the GP always knows best.
I recently betrayed his trust by showing pics of his symptoms to a friend's husband who is a well regarded ENT specialist and he tried to help by suggesting how he could be seen at ENT quickly but my oh is insisting the GP knows best.
AIBU to try and speak to his GP? Is this just unethical. We have 3 young kids and he is a stay at home dad (retired). The children wouldn't do well without him.
I am very scared.

Would you write him a letter? Tell him exactly what you want to say but can’t or won’t say face to face. It can be very scary to say “I’m scared you will die” out loud, I know. Tell him you love him, the kids love him and together you’ll work through whatever it is but that not knowing and waiting for something awful to happen is crippling you with fear and anxiety.

OH health has been worsening for a couple of years. This time round pleurisy. We have a scheduled appointment following x rays and bloods results done a fortnight ago a week on Tuesday, I know it will not be good news. It is hard trying to be upbeat with DS going off to university in a couple of weeks we are trying not to think about it.

Unfortunately these days there is no such thing as off the record for doctors. We have to be so careful about what we say anywhere now, even on social media @TatianaLarina . I’m sorry to hear about your dad. (FWIW chest infections and acute heart failure can present identically at times. 10 minutes to take history and examine is not easy)

OP - breathlessness, fatigue and melaena? Genuine proper melaena? And your GP knows this? Well then all the more important he needs to be seen. I think ENT may not be the right referral though. If you have a vague symptoms pathway locally that may be better.

Good luck to you x

@Lostmychristmasspirit I guess the fact that there is nothing off the record is why no one should take advice on Mumsnet from a medic's wife that suggests a third party consultation .
Lesson learned!

Your husband is an idiot.

A good friend of mine died this year of a brain tumour. She found out when she went to A & E and turned out they were secondary tumours. She died within 3 months. Prior to that she'd seen her GP repeatedly for headaches but was just fobbed off and given painkillers. By the time she had a diagnosis it was too late to do anything.

I agree with previous suggestion of taking him to A & E. If they won't see him as an emergency, then your suggestion of a private referral is a good one.

@INeedToThrowItAllOut - while I am sorry to hear of your friend I suspect this happens all the time.

I suspect it's happening to my OH however this is a grown man of sound mind. We live an hour from the nearest A&E, I can't abduct him and take him against his will.

To be honest, I am grateful for all the advice, but my best chance with this was to get the GP onside. I now know they can't and even more sadly won't take the info I have offered into account.

I will pursue the GMC ( regardless of whether @Lostmychristmasspirit thinks it's futile.) It's the futility of general practice that I lay the blame for this nightmare at the door of.

The GP even said at one point he was no longer her responsibility as he was under the care of secondary care. Ahhh the caring profession! What a joke.

Anyway I am stepping out of this situation. I was trying to progress it for the sake of the children. There is no point. He doesn't care, the GP doesn't care and I have nothing left to give this.

I feel very sorry for anyone who can't advocate for their own health, but apart from on behalf of my children, I will never waste my energy again, no matter what the stakes are.

My OH knows exactly what I think he is suffering from and deep inside he knows himself and is playing for time that it will disappear. For as long as he is in denial and the GP is turning a blind eye to the information she has been given I give up. I don't believe for one second the GMC won't have an opinion on this.

FWIW chest infections and acute heart failure can present identically at times. 10 minutes to take history and examine is not easy

He didn’t have any symptoms of a chest infection. Only a very minor cough but he coughed up blood. He was xrayed, radiologist ruled out cancer and TB, but there was a shadow on his lung. GP gave him antibiotics.

I was certain GP was wrong so I went round, took his pulse, it was all over the place, noted his symptoms and rang my DH who’s a surgeon. He said from the info I gave it was either a) damage to his heart or b) virus in the heart muscle. (Turned out to be the former, the shadow was blood leaking into his lungs which was why he couldn’t breathe.) Gave me the name of a cardiologist friend to make a next day appt with.

Maz. I am sorry you are in this hideous situation. Realistically, there is nothing more you can do. As you say, he is a grown man and you can’t make him do anything. I think you are right to step away. The only route left to you now is to protect your children and yourself as much as you can. Wishing you strength. 💐

I should have said he was coughing up blood and had melena for a period in July.

Oh God OP. Coughing up blood is such a serious symptom. I'm really at a loss to understand what is going on with either your GP and your husband.

I feel for you deeply and hope this has a happy outcome. I think the only thing you can do is give him a serious ultimatum and mean it - ie. either he goes with you now to either A&E or the GP for the GP to privately refer you or your relationship is over and he needs to move out. You need something seriously drastic to force him to push his own medical case. I'm sure he's scared but the earlier they get these things the better - 22 weeks is a lot of tumour growing time.

FWIW my friend who died this year her brain tumours were secondary and her primary cancer was lung cancer. She told me that about 12 months before her A&E crisis she'd coughed up a bit of blood and ignored it as it hadn't happened again. She looked back and said she wished she'd treated it as the read alert it was as it might have saved her life.

He's gripped by fear. My DF was like this. Kept saying he was constipated, which he thought he was, but refused to see his GP. He wouldn't listen to my DM.

My Dsis eventually insisted he was seen. He was taken to A and E and ended up having an apple sized tumour removed from his large intestine.

We discovered it was cancerous after it was removed.

You can't do any more than you've done.... leave him be and prepare yourself for being able
to manage in his absence....

Hopefully not being married you've previously discussed wills etc
Are you down as his NOK? Paperwork being in order is a good idea too.

I hope it turns out okay... but in the meanwhile don't make yourself ill over it. Infact try and say nothing from now on, because it's clearly giving you a lot of anxiety and understandably so.

My dad ignored blood in the toilet for a long time. He eventually went to the GP who did some blood tests and took some history, dad went home
The GP sent an ambulance (he knew my dad wouldn't take himself straight away) to my dad to take him to hospital. He had polyps which could have easily been sorted but he ignored them for so long he ended up having two blood transfusions. He was so so anaemic the GP was concerned he would die because the blood loss was so severe
He's fine now and tends to see the doctor a lot sooner, the GP he saw then gave him a massive bollocking for ignoring the fact he was gushing blood

There’s nothing else to say OP but I’m so very sorry you’re going through this. That GP sounds ultra shit. X

@maz2003 I’m confused by what you mean, I am not a medics wife.

I’m going respectfully bow out of this now and go back to avoiding threads containing GP bashing as there is no point even trying to defend my profession anymore.

As I said previously, good luck to you and your husband.

I am so sorry you're going through this OP. I am surprised at the GP, I wonder if your partner has told her he won't be treated regardless and doesn't want a referral? I contacted our GP when my now ex-husband refused to go despite ticking every box for prostate cancer. He was only around 40 at the time but this cancer had run through the males of the family, some very young. GP responded magnificently and got him into the surgery. It turned out that he had a bladder condition that was so advanced he was almost at the point of needing a kidney transplant. He was treated but it has had a massive impact on his health and could have been found so much earlier. I can't imagine a GP not acting on this information unless there is something you don't know or have not been told. I don't know what the answer is here, but I understand how awful it is when a fully grown adult/father won't take responsibility for their health. I hope you get some answers and wish you well

It sounds like there is nothing more you can do.

I wonder if you now back off he will really start to worry? Or take it as a ‘win’?

How long will he take those antibiotics for? What’s the plan for them not working? Back to dermatology?

Put in a complaint to the practice manager first. Include info of all the symptoms that are being ignored because the patient is being stubborn and the specific instances the GP has refused to help.

@Lostmychristmasspirit - I know. Earlier on in this post someone whose husband is a GP advised me to see/write to OH's GP and so long as it was in his best interest they would listen/act. Totally contrary to what you have said.

Morning OP. I've just read the full thread. He's behaving horrifically, regardless of whether it's from fear or denial (same thing) or anything else.

You also sound utterly exhausted. Is there any chance you can get away for 24-48 hrs? Go to a hotel alone and literally do nothing? All your energy seems to be pouring into him and your aunt and obviously kids take energy out too and you're working. Can you just take time for yourself and get some sleep?

And then come back and don't discuss his health again with him. Focus on making sure you and the kids are financially covered whatever happens with his health going ahead.

Or think about whether you actually want to be in this relationship. You're not happy at all. He's ill and not bothered enough about his kids to get proper medical help. They can still see him lots but you don't necessarily need to live together or remain in a committed marriage style relationship.

You have done everything you can possibly do regarding his health though. He doesn't want to listen to you (he doesn't even want you to speak) and the system is ignoring you. Focus on yourself and the kids.

@Stuffofawesome I did think of doing this but in light of what the GP has said about nothing being off the record I am going no where near anyone at the surgery.
I have started a fairly comprehensive log of everything that has/hasn't happened since March including disingenuous offer from the GP of "thinking of a reason" to get oh into the surgery and then not bothering and her own admission it was a disgrace that bloods/labs/imaging hadn't been undertaken. When this living nightmare is over that's all going to the GMC, along with the photos that I showed the GP and she has chosen to ignore.

It's hard, @maz2003. From your point of view, you are his wife and sharing information that he should share, but isn't, and the GP might need. But in other situations, it would be quite dangerous to accept information from third-party people. For a while, my mother used to write to the doctors with lists of symptoms that one of her children was "too embarrassed" to confess to, so we'd be prescribed medication that she wanted. There's issues with reliability of information that comes from third parties, it's difficult to mitigate the risk of harm.

Your case is somewhat unusual because your partner appears to be the biggest barrier in getting any treatment. If you hadn't been so sure, I'd be wondering if he already knew what was wrong and just didn't want everyone else to know... My grandad had stomach cancer but didn't want to have treatment and therefore told no one, so they wouldn't worry. We found out only when it was bad enough that the doctor had to visit at home... If it's not that, then he just seems to determined to bury his head in the sand.

Has he taken steps at least to make sure that you and the kids would be okay if he couldn't work, or did die? Is he practical like that?
He doesn't seem to be overly bothered that you're very worried about him, or that he could leave his kids without a Dad.

Why are you blaming the GP when you know your husband has at least lied to them about smoking? I bet he hasn't mentioned the malaena and haemoptysis.

Your GP can't force him to go in. He is a competent adult. You're attacking the wrong person.

@worriedaboutray I agree that oh is not helping himself, hence this post in the first place. My anger is towards him first and foremost. That said the GP has some responsibility, particularly given she now has more info. Of course she can't force him in, but she agreed to suggest he come in and then didn't. She knows his case needs reviewed and is doing nothing.
I have nothing but rage for both him and for the GP.

@Lostmychristmasspirit - I know. Earlier on in this post someone whose husband is a GP advised me to see/write to OH's GP and so long as it was in his best interest they would listen/act. Totally contrary to what you have said.

I don't know what else you have been told as I've read the thread but missed this bit - but of course if you want to write to OHs GP you can do that. You can't do it in a way that is 'off the record' or in a way that means the GP will discuss his case with you.

The GP will not be able to discuss his case with you (unless he consents) as it is his confidential information.

That is completely different from you providing information to the GP which if it was relevant they would take into account and raise with your OH.

I would suggest in the letter that
you make clear that this letter is for information only, you understand they can't discuss the case with you and are not asking them to do so
and
that you accept the GP will want to discuss it with your OH so are not writing in confidence and not asking them to keep it confidential.

You should tell you OH you have done so as well to avoid a shock to him when the GP mentions it.

@INeedToThrowItAllOut As you say you have missed a fairly big chunk of the thread.

Of course she can't force him in, but she agreed to suggest he come in and then didn't. She knows his case needs reviewed and is doing nothing.

A competent adult can legally refuse treatment. I'm sorry but you're being ridiculous by blaming and feeling "rage" towards the GP.

As for going to the GMC, doctors commit suicide under GMC investigation. The GP has referred him to numerous specialists, he is concealing relevant risk factors from her and potentially also concealing red flag symptoms.

I know you're hurting and distressed, but don't throw that at the door of the GP to make yourself feel better.

I've seen GPs stalked by patients who blame them for a relative's illness or death. It can break a person.

Your GP's hands are tied by law and medical ethics.