To want to go to hospital appointment with DH?

[justonemire]

DH has had investigations for a life limiting illness. Last week he received a letter to confirm he does have this illness. We are in our forties with young DC and this is devastating news. DH has an appointment with the consultant in 4 weeks time. This is our opportunity to find out how bad things are and if there is any treatment. The letter says due to Covid you cannot take anyone with you. He really needs the emotional support. AIBU to think I should be allowed to go to this appointment? Has anyone broken this rule and we're you challenged at the hospital? Not sure what to do for the best. Don't want to annoy the consultant and not get the best treatment we can as a result.

Pretty sure this is outdated. My husband came with me and mum went with dad. Just go.

Op on most clinic appointments letter or online about the clinics they usually say something about carers I required can go - as pp have said he won't t remember what is said & an extra pair of ears will help. & By all means right list of questions & note down answers & ask if they will be sending info letter or copy of letter to your gp - in my dh case for any appointments including on phone we have a ready made excuse as he is hard of hearing & he will miss hear a third of what is said etc
Just ring clinic & say you ARE coming as emotional support & you will need to be there to understand any role you have in his care & support - aka you are ringing them to inform them, diplomatically.

I'm really sorry for your DH's diagnosis. Chances are they have not updated their letter wording yet. I had a scan a few months ago and the letter said to come alone. I rang to query this and they said that they had not updated the letters yet, but you can now be accompanied to appointments.

Just to answer your follow up questions.

I have a big notebook I take notes in, at the top of the page date and time of the meeting, where the meeting was, and the specialty - If I can get it the name of the person I spoke to I add that too (but there are lots!)

Then just bullet points of the situation and what the next steps are, details on where and when this will happen and who to call if we don't hear anything by a certain date or time.

Then contact details of wards (if admitted), visiting times and arrangements for booking visiting and how many visitors allowed (and if young children are appropriate, in all honesty I would avoid young kids visits and visit downstairs in the coffee shop if he's well enough to come down, or keep the visit very short - dh was on a neuro ward, and some people were very ill, not that dh was much better), but it just wasn't the place for them.

You'll probably need a couple of poly wallets in different colours, as you may well be under different specialties who kind of pass the patient parcel to parcel, so radiotherapy, surgery, anesthesia and chemotherapy are all run by different teams with lead consultants.

You won't be walking this path alone, scary as it is, and there is always someone worse off in the waiting area.

Sorry, the poly wallets are to keep all the letters, patient information and contact details - there is ALOT of paperwork to keep straight, and also consultant letters can take several weeks to come through, but you'll get all the information in the meeting - The letters are in doctor speak.

@Oioicaptain thank you for the sympathy! Its tough at times but I'm getting there. To be honest, I have been more than happy with the treatment I have received. I was seen that very day when I phoned my GP surgery to say id found a lump and had my first hospital appointment the next week. Its a bit of a trek to the nearest hospital so phone appointments are a godsend. I did walk through the hospital having a bit of a weep and chanting to myself 'its only a cyst' when I went for my first biopsy, but a random member of staff stopped me and then accompanied me the rest of the way to the the Breast Care Centre, chanting alongside me!! All is good!

I am very sorry to read the details of your post.

I would go with him - if challenged (which hopefully you wouldn't be) I would explain position or if you don't want to go into detail say you are there for support/ have questions ref his treatment which you will be there for /are his chaperone or whatever gets you in there

Last week I had a follow up following surgery - my DH drove me to the Appt and he came in with ne -no one questioned it and it was so helpful as I couldn't take everything in that the Consultant said

Wishing you all the best and hope you have better news at the Appt

Wear a mask and go with him. Don't ask for permission. If fucking Boris and Co can have parties in lockdown ?
You need to be with your husband for emotional support.

I was able to accompany my DM last Feb for an ENT appointment and was able to go into the consultation room with her. There was the consultant, a nurse, my dm and myself in one small room. This wasn't an issue even though ENT is higher risk re covid.

My mum just started chemo this week and my dad wasn’t allowed to stay with her. It seems they are all making up their own rules.

Re asking questions:

Read up as much as possible in advance about the condition, including recent advances in treatment/ongoing trials.
Ask about treatment plans - timescales, side effects etc.
Ask about support - any disability aids/physiotherapy/home modifications if needs be and any support groups.
Ask about lifestyle changes if needs be in terms of diet and other things which may be incompatible with some medications etc.
Look at the letter that you received (which is usually one written by the consultant to your Dr and usually full of acronyms and sometimes meaningless blood count numbers/genes and ask them to explain what exactly it all means.
Write down and take notes during the meeting.

Don't expect to take it all in or make sense of it all in one go. There will undoubtedly be a lot of info to digest during a very emotive time.

Ask about who your contact point is for further questions/who is leading/coordinating the treatment or care plan (drs often prescribe pain meds and the hospital the other meds, to avoid duplication).
Ask about who you will need to contact and when in relation to any physical changes etc.

Sometimes the consultant will schedule appointments with a specialist nurse who will be a point of contact and have lots of further information.

@Timeforabiscuit makes some good points for your follow up questions @justonemire . I have found it really helpful to have a hospital bag that I keep everything I might need for an appointment in. That way, I don't have to think, I just pick up the bag and go. Inside is a wallet with the poly pockets and letters, blood forms for samples, a notebook and pen, a magazine, a puzzle book (which I haven't touched!), lip salve, moisturiser, earphones for my phone so I can listen to a podcast, any medication I've been given (so I always know where to find it!), some woolly socks because I get cold feet, a card with important phone numbers on (for me the Breast Care Nurse, Cancer Helpline, Macmillan nurse etc), an envelope to collect parking tickets in so that I can claim the charges back. There are a few things I haven't used in there too, like a packet of tissues (hospitals are well equipped with them!) and some eye shades (I thought I might doze during chemo, I was wrong!!). Some other bits of advice - get googling! Definitely not for websites about your husband's condition - that way only disaster lies. But there are all sorts of disease specific charities and some of them have free care packages for patients. I got a lovely one from Breast Cancer Now. They might also have forums for both patients and carers, i found the Breast Cancer Now one really helpful. Some one on there is likely to be struggling with whatever you are struggling with and can give advice, especially on dealing with symptoms or side effects of treatment. If you are offered the opportunity to sign up for counselling, take it. In my Trust, there is an 8 week waiting list, so if you wait until you need it you will have to wait even more. You can always cancel if your turn comes up and you decide you don't need it now. There is often counselling for carers too. My really big piece of advice, is to just focus on the appointments right in front of you. Don't spend time worrying about what might happen in the future, get through the here and now. Right now I'm near the end of chemo and will then start radiotherapy. I'm not even thinking about the radio until the chemo is out of the way. You both have enough to worry about without adding to it before you need to.

Let us know what happened, OP. afaik, official local policy is still no companions for hospital treatment. Only allowed 1 companion or visitor for life (birth) or death (people on palliative pathway).

Just go with him, we are in somewhat the same situation and I am asked to wait outside of the patient waiting room until my husband is seen. He is given a card which he gives to the nurse and when it is his turn to be seen the nurse calls me in. and then I can go straight into the consultation with my husband. No problem with this, ask if you can do this. Hope the news is not as bad as expected for you xx

Contact the consultants secretary and see what the situation actually is. It may be that you can’t wait in the waiting room but can go in to actual appointment.That’s what we are doing and our patients are extremely immunocompromised. In the height of COVID we did some consultants with relatives on FaceTime. Not ideal at all but if they really don’t budge could this be an option?
Sorry you are going through this OP.

Actually, when I went with DS for his consult (broken bone in hand, March 2022), there were LOTS of ppl in waiting room with companions. The companions couldn't come in for consult with an adult patient, but no one was policing who sat with them in wait room.

Oh that’s so awful, your poor husband.

I’d write to Pals, and say as DH has been diagnosed with a life limiting condition, you are his carer - and you need to accompany him, as a reasonable adjustment under The Equality Act. The Equality Act is an Act of Parliament and takes precedence over non-statutory guidance by the local Director of Public Health or a hospital’s internal guidelines. After all, chances are you will be looking after DH in some way or other - and you need to hear information, he might not take in.

We heard that the Mount Vernon cancer treatment centre records all appointments for patients, and gives them a copy of the recording to take away.

I'm a clinician who has been hounding communications to change our bloody letters. They still say we ll be wearing apron and gloves too and we haven't for ages. Honestly call the secretary and check in. Even when that was that rule we had flex at our discretion and I always gave it. Even in the height I was in close proximity with there none PPE wearing children and had to remove mine due to the nature of the role. So having an extra adult from the same household/bubble didn't feel an increase in risk to me

I would call and ask, or tell them you need someone with you. I have twice been diagnosed with cancer in the last two years (all through the pandemic), and my DH was allowed/ encouraged to come with me to every single appointment -though the operations, actual treatment, etc I went to alone. My hospital was at the very epicentre of the covid outbreak at the start. Even now, with appointments, we go together. I sit in the waiting room, and accompanying partners sit outside in the corridor, but when called in to see the doctor, we both go in.

Even when that was that rule we had flex at our discretion and I always gave it.

Both of us went with DD to the last appointment with her consultant, and he told us, as far as he was concerned, we could all take our masks off! We’ve been told, they are confident we don’t put our own lives at risk!

Further to the excellent advise given above, I also take the iPad and record appointments. I have had to swear on my mothers grave that I wouldn’t broadcast it in any social media (easy for me) but it means that I can refer back to what the specialist says and also to what he shows, X-rays, scans, models etc. Dh rarely comes to dd’s appointments so once I did pull the card “my husband is paying for this and he is going to hear what you are saying”.

It’s really useful because often appointments can have some time between them so a refresher is good.

I have recently been diagnosed with a life-limiting illness and also received that text on a letter. When I arrived at the appointment without DH, having followed the letter's instructions, the doctor asked why he wasn't with me and said that text doesn't apply. Please call to confirm or just go along.

As others have said, the letters haven't been updated. I was looking at a local crematorium the other day which said that numbers for funerals might still be restricted for covid!

(((HUG))) I'm sorry he went through that & im sorry you did too & that you lost him. Cancer is a bastard. Xx