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.

@worriedaboutray the GP has the information and is not acting on, she supposedly has his best interest at heart. She is choosing not to act on it. And I am ridiculous?

It sounds incredibly worrying and stressful. And frustrating. My DH can be very stubborn and I think he might adopt a similar approach. And when he digs his heels in they tend to stay dug in.

It seems like you have done lots of reading and research and are obviously worried about lung cancer and are fearing the worst. I almost hesitate to say this but could it be that he has been diagnosed, has refused treatment (or been told it is too advanced for treatment) and he hasn’t told you? That might explain the GP’s apparent lack of care. If he has refused treatment and not told you there is not a lot they can do without betraying patient confidentiality.

I hope not obviously but just wondered if that might be what has happened.

As I said my DH might adopt the same approach. In our case I would be giving a ultimatum that he goes to GP with me or he moves out. If he can’t do me and DC the respect of being open and trying to do as much as he can to get to the bottom of it I wouldn’t want him around. Brutal as that may seem.

I do appreciate that you are not me and appear to have a more difficult relationship.

the GP has the information and is not acting on, she supposedly has his best interest at heart. She is choosing not to act on it. And I am ridiculous?

Act on it how, section him? Come to the house and insist he's treated?

If he won't go in, pursuing him will eventually constitute harassment. There is nothing she can do if he does not want her help.

www.nhs.uk/common-health-questions/nhs-services-and-treatments/do-i-have-the-right-to-refuse-treatment/

This is the pillar of medical ethics called Autonomy.

Voluntary: you must make your decision to consent to or refuse treatment alone, and your decision must not be due to pressure by healthcare professionals, friends or family.

@worriedaboutray which I respect but she disingenuously said she would act on the information and did nothing, and also agreed it was unacceptable that imaging, bloods and labs hadn't been undertaken. You can't have it all ways.
There was no gun at her head when SHE suggested she would do something and when SHE conceded that she was worried too.
I have every right to be less than impressed that she hasn't met her own self imposed outcomes.

As awful as it is for you OP your DH has the right to refuse treatment, he has the right to make decisions not in his best interest, which includes not visiting the GP. The GP cannot force him to come in.

If the GP believes his ability to consent is impaired then yes they could act in his best interests but not if the GP thinks he has the ability to consent for himself. It's his body and his decisions, that is acting in this best interests

Some GPs may go against this in cases such as this, however this is technically against medical ethics. The GMC won't find that this GP has done anything wrong

I am so sorry OP that you are going through this it is your DH who you should be angry with, it is him who is being so incredibly selfish.

@worriedaboutray He isn't refusing treatment or not attending appointments... if she calls him in he will go. He totally takes her opinion as expert.

and also agreed it was unacceptable that imaging, bloods and labs hadn't been undertaken.

This is what I don't understand. Isn't this her job? My GP arranged for me to have an MRI when I told him I'd been getting headaches (I rarely get headaches, and already have cancer, elsewhere). He didn't tell me to contact my care team to get them to arrange the scan.

@Motoko - agree it's odd. She was keen to blame secondary care. The buck passing is tiresome and unprofessional.

Your husband is a very intelligent man. He knows that the GP is not a specialist. He also knows that she cannot make further referrals or investigations if he does not want them.

You have provided the GP with your observations, but you don't know what he has said to her. She could have, in all good will, said that she'll take further action, only to then check his notes and see that he has refused any further investigations. She cannot tell you this.

Even if the GMC decide there are grounds to investigate, they have no power to alter your husband's care. That has to come from him. Also they'll be very limited in what they can tell you, as anything concerning your husband's care will be confidential.

I'd also keep in mind that, once the GP is made aware of your complaint, your husband will become aware. He'll need to authorise access to his medical records. If you don't feel safe to tell your husband that you've contacted the GP, what will happen at that point?

I completely understand your concern and the strain this must be putting you under, but your problem is solely with your husband. He has the capacity and the capability to get the help he needs, but he refuses to do so. Nothing will change until he chooses to act, or in the unlikely situation that he is deemed to not have capacity.

I can imagine. I'm starting to wonder if pps are right, that he knows more than he's telling you, and is refusing treatment. It's completely selfish for someone to not keep their partner informed about something like this. I tell my husband everything, and he comes to all my appointments, which serves 2 functions, he's kept in the loop, and also if I've forgotten something I've been told, or I have forgotten to tell my consultant something, then he's able to remind me.

There was no gun at her head when SHE suggested she would do something and when SHE conceded that she was worried too.
I have every right to be less than impressed that she hasn't met her own self imposed outcomes

And none of this has anything to do with the fact that you keep going in and insisting she does something about your husband?

It sounds like she's stuck in the middle. He doesn't want to act, but the GP can't break confidentiality and tell you this.

I've seen this situation play out, but usually with older relatives who still have capacity. The GPs will be discussing this situation at their practice meetings and trying to work out a way forward.

The part about failing to order tests etc. is weird and frankly further evidence that you don't have the full story here.

If you say:
You: why haven't tests been done

The GP cannot legally say "actually he has had XY test and refused Z test" because that breaks confidentiality. So all she can do is placate you.

OP I am so sorry your DH is such an arsehole. I think you are right at this stage to focus your energy on your DC and your ill relative. You are clearly v strong and resourceful and whatever happens with your husband I am sure you will protect your children through it.

Additionally, she may well have asked him to come in. She cannot legally reveal the details of that conversation to you or even mention that she called him.

Fil did something similiar when he had aggressive prostate cancer. He dealt with things by himself and avoided treatment and then died two years later. We were kept in the dark and he only told mil and us what he wanted us to know. He was quite comfortable with declining investigations and treatment and knew his own mind and the issues involved. It was frustrating, but we had to accept it.

I think the best thing you can do is sort out any outstanding financial/property issues in the event that you're facing widowhood. Make sure a will is in place etc.

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

She doesn't need to. All she needs to do is to what she said she planned to do, i.e. ask OP's husband in for a review, examine him thoroughly, and ask a few questions directed at the areas of concern that OP reported - and, of course, anything else that arises.

Thank you, you have eloquently summed up my position. I want the GP to do what she said she would, nothing more, nothing less. I am as sure as I can be that she hasnt contacted to review OH as he would go and see her. He isnt refusing treatment or appointments. He doesnt want to look like the elephant man and he does vaguely accept that this could be a bad situation. He trusts his GP implicitly, and I she suggested that he come in, he would go. I actually feel sad that she is saying that it requires further investigations on one hand, and is doing nothing to progress these. This is where she is failing him. And our family.

It is now only about the children.

If he seems to take more notice of what his ex wife says could you talk to her? Would she persuade him to see the ENT?

If he's so keen to go to see the GP and he is sick of being so swollen, why doesn't he just make an appointment himself?

She isn't failing him and your family your husband is a grown man, not a child. He should make his own appointment.

That is very sad. I do accept that some people dont want treatment. I dont believe that this is the case with OH. He just doesnt seem to be for seeking it out. He is happy to volunteer limited information ( he also doesnt think a lot of what is pertinent is so, so is omitting it rather than withholding it, if that makes sense. For example he sees no link between smoking and a swollen eye.... therefore sees no reason to bring it up). Ridiculous, I know.
I have sympathy with medics trying to diagnose in a vacuum of limited information, however the GP said to me in light of the new info she would take action. She has not.

The children are yours and your husbands responsibility, not the GP’s. I’m not sure how the GMC are going to protect your children from your husbands wilful self neglect.

Maybe the GP has spoken to your husband and he told her to leave him alone? She can’t tell you that.

@worriedaboutray he is taking his medication as requested. He sees no reason to go back until it's finished, despite being told there should be an marked improvement by now.
I think we need to agree to disagree. I had a commitment from the GP to take action on the basis of the information I gave her. She didn't act. I am sorry if you feel this is unreasonable but I won't argue any further about the fact I feel let down about action promised and not carried out.

@QueenOfPain at what point did I say the GMC has a responsibility to my children?!

I think you're directing your anger at the wrong person because it's easier to blame all this confusion and hurt on a stranger than it is to blame the person you love.