My wife received a letter today, confirming her consultation date when she will finally learn if any treatment is available to her and if so what is recommended.
However, this letter also states "please would you attend alone."
This is utterly astonishing. They say it's due to the pandemic. Yet when she had her first consultation there was a doctor, a nurse, a student nurse, my wife and myself all in the room and Covid cases were rising. We were all masked of course. Last week my wife and I sat in a waiting room for half an hour along with five other people,. three of whom weren't masked.
The letter does say it's possible to be accompanied but only "under exceptional circumstances" and "with agreement on the day from the doctor."
This is in my view OUTRAGEOUS. I cannot see any justification for it at all. Covid cases were far higher in this area and rising at just about every step of the way.
I don't know if anyone has faced anything similar but if so I'd be interested to know how they coped with it. But I know this. My wife doesn't want to walk into that room alone. And she's not going to. What are they going to do? Refuse to go ahead with the consultation? Call security to eject me from the premises?
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scotleag
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All my letters say I have to go alone, but I overheard my oncologist saying to one patient, oh that doesn’t apply to these appointments you can always bring your wife. Just go. It’s a standard letter from the hospital, the oncologist will not expect your wife to be on your own. She needs you and your oncologist will expect that - unless of you have symptoms then the right thing to do would be stay away! Best wishes to you both x
I went to all of my dads appointments and when my dad was diagnosed the lung nurse said because it’s cancer you can always have someone with you for consultations, you just can’t stay with them during their treatment. This was when there were still loads of strict rules because of the pandemic.
A couple of times the security guards at the hospital tried to tell me I couldn’t take him in, I said he’s got cancer and I’m his carer and we’ve been told he can always be accompanied so I’m coming in. They never stopped me.
Just tell them your wife has to have you there for her mental health if they try and stop you.
Say you are her "carer' this works . At the age of 50, I didn't want to have my husband referred too as my carer but it is definitely a way around it at my hospital ...
Hi Scott leag, ignore the letter, it is just an administrative thing. I got cought with that with 1st appt when diagnosed and they asked me why my husband wasn't there with me. They said to ignore the letter and my husband now always come and is very welcomed, so do go along without fears.
I would go.During my consultations and surgery, I had to go alone, even when I had open lobectomy surgery… it was awful and very insulate! I t made my depressed and very sad! It was the start and during the pandemic from May 2020, and had surgery in July 2020. Most of my other appointments were by phone, even my diagnosis!
It is completely understandable your frustration and anger, especially when it is cancer and how important it is for the person to be supported and their loved ones.
Every hospital seems to be different with their restrictions, and the letters are usually a standard one that is sent for all appointments. Am sure you will be fine to attend and as you say you already adhere to the covid safety measures.
You may wish to raise your concern to PALS (The Patient Advice and Liaisons services) within the hospital, you will find them on the hospital website or you could ask switchboard to put you through to them.
Perhaps call the oncologists secretary and request that you are present at the consultation, or the lung cancer nurse specialist.
Please do not hesitate to contact us if you would like to discuss anything, either by email to ask the nurse at lungcancerhelp@roycastle.org or call the free phone nurse led helpline on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600
Thank you to everyone who replied. The suggestion seems to be this is a standard letter and that thought certainly crossed my mind, but no other letter from the hospital - including my wife's previous consultation - said anything similar. This is also a part of the hospital she's never been to before and separate from the main hospital building, which is what led me to believe their rules might be different. I'm going to call the number on the letter for Clinical Oncology to clarify this but also to let them know my wife will not - under any circumstances - be going in alone.
Would def recommend sorting it out before you go. I had a difficult time once when I wasn’t allowed in because I wasn’t on the “guest list”. we needed to get the oncologist on the phone to speak to them. But it was for scan results and there was no way anyone should get these on their own. X
I was amazed to be invited to an in person check up at my district general hospital in May 2020 and wore an industrial dust mask to the appointment (masks hadn't been mandated then) and they'd moved the chest clinic upstairs (maybe a hospital planner with a sick sense of humour?) and I said to the nurse I was surprised. She said 'well I checked and you hadn't had an x-ray or been seen in person so I booked blood tests too to make the most of the appointment. When I asked her who was being allowed in for face to face appointments, she said those receiving a diagnosis and I asked if they had to come alone and she said ' no, we allow somebody to accompany people who are being given their diagnosis and treatment options'. so if that could happen right at the start before we had vaccines, tests or masks, I have no idea why it would still be the case....
My parents attend everything together as my mum has alzheimers and dad is her carer so whether it's his or her appointment, they go to everything together (sometimes with my younger sister) so mum can stay outside the room with my sister if they're not permitted in the clinical space although if it relates to mum, they have to be there as she doesn't understand.
I've previously raised concerns about standard letters as been angered by them on more than one occasion from more than one Trust - I was sent a letter saying I had an appointment with the consultant right at the start of my 'journey' and he'd been adamant that I couldn't see him until I had my CT yet I'd been phoned to say the scanner had broken down and they had to order parts. When I'd tried to change the scan to the other hospital site the secretary said only the consultant could change the appointment and he was on 2 weeks holiday. When I explained my concern, she said, 'no your appointment is with a respiratory nurse'. When I asked why would I want to see one of those and why did the letter state 'with the consultant' her response was 'it's a consultant led clinic so they have to be written that way'. My response was 'that's very confusing from a patient perspective' was met with 'yes, we get a lot of complaints'.... so why didn't they do anything about it?
My second experience was with another trust where I'd been referred for Urodynamics test for stress incontinence with coughing and was sent a letter with leaflets enclosed about prostate cancer and the Gleeson score index despite the letter being addressed to 'Mrs....' when I phoned them and said it would be clinically impossible for me to have prostate cancer but this might have scared people who don't know human biology, she said 'well he has so few women patients, we send the same information out to everyone'.
Careless communication from clinicians and administration staff has consequences not only for those who receive them but also relatives and those they tell...
it's such an easy fix and one that some compassionate and empathy training would make a huge difference for all those affected.
Do make your views known to PALS and the hospital - who often say they want to know 'patient stories' so they can improve for the future.
That's some pretty awful experiences, especially the prostate one. You're right. Not everyone is going to realise it's not applicable to them. Even if this IS a form letter it's enough to scare some people who will simply accept what it says on the tin. I wasn't aware of PALS and I shall certainly let them know, adding this to the diagnosis letter and the postponed then reinstated bronchoscopy.
Not making excuses for anyone but NHS is pushed to the limits. Good to feedback to PALS. I have had similar in a letter too and when made direct contact with cancer nurse, it was very clear that the situation can be flexible to get the best for patients. Unfortunately sometimes the routine admin over looks this. Also at other times patients don’t consider the knock on effects of covid on others and increase the risks for other patients and hospital staff by ignoring advice. This isn’t good either. Wishing you and your wife a good appointment. Might be useful to take a list of questions. My partner and I often remember different things from the appointment
Just to say I've spoken with my wife's nurse who said I wouldn't be allowed to sit in the waiting room with her but there would be no problem going in alongside her for this and any future consultations.
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