DM invited for a ‘targeted lung health care check’ letter of findings sent through post………

[WiseRobin]

My soon to be 75yo DM was recently invited for a targeted lung health care check, where she had a CT scan and was told she’d get the results in a few weeks.

DM rang me to say all was GREAT nothing found on the scan, I asked her to send me a copy of the letter, which she did. She’d read out some parts of the ‘CT pro-forma’ (which I’ve attached a copy of) and this is what concerned me, my DM had just glanced over it, seen that all was good with her lungs and thought that the non actionable meant for everything they’d picked up on the scan!

I’ve told her to contact her GP on Monday to discuss the findings and that rather than nothing was found regarding the lung health check, subsequent findings have been flagged up!

AIBU to be annoyed that there is nowhere on the letter clearly stating that a follow up to the other findings are needed!

all there was at the very bottom of the letter was a link to The British Heart Foundation and The Roy Castle Foundation!

Is this because she’s almost 75 and not deemed worth bothering about?!

Also, if anyone has experience with severe coronary artery calcification and mild centrilobular emphysema, please share here.

I’m just upset that there’s no follow up! I’ll make sure there is though!

Re gallstones. So many of the population have them they only need treatment if they are causing pain/issues which Im assuming they aren't for your mum so no action there. Not sure about the other thing though

Looks like her lungs are fine but she's got severe coronary artery disease. She needs referral to a cardiologist, surely?

A very high percentage of over 70s have coronary artery calcification, don't think there's usually any specific treatment for it, just if on meds already for high BP or cholesterol to keep taking them.
Has she current symptoms of emphysema, was she a smoker?
Again wld usually just be treatment if
any symptoms like inhaler, steroids etc

The radiologist has mentioned other issues as well, but from a one-line report it's hard to say if that's unusual for someone of your DM's age or something she is currently being treated for. You can read a bit of info about the campaign on the RCLCF's website, it is targeted at smokers and some of the issues mentioned are more prevalent with smokers and would be why she was offered the check in the first place.

Hope you can get some more information on Monday OP.

@GreenLunchBox That’s what I would have presumed, at least a referral but nothing.

@FannyFifer DM isn’t taking any medication, nothing for BP or Cholesterol. She quit smoking around 12 years ago, does suffer from a cough that produces phlegm, gets worse with a cold.

I’m just a bit gobsmacked that there’s been no action of a follow up.

I had an MRI because I have an autoimmune condition and they needed to check an area, found another issue they weren’t expecting and they referred me. That’s what I would have expected for my DM who has hardly needed to use the NHS throughout her working life.

She only retired in 2020!

@ChicCroissant that makes sense. Think I was just a little taken aback that there’s been no suggestion of a referral or what to ask on the letter, plus the fact my DM had glossed over it.

My letter with subsequent findings gave clear indications of referrals.

Feels like it’s an age thing but then again I’m possibly being super sensitive as it’s my DM.

She definitely needs statins and a blood thinner like Aspirin. Why don't you book a GP appt to discuss?

@GreenLunchBox DM has assured me that she will be making a GP appointment on Monday.

If I hadn’t asked DM to read out exactly what had been detected, which is when I asked her to send me a copy, DM wouldn’t have bothered as she’d read it as no follow up/no issues😓

You're not being supersensitive. If you ever have a spare 3 days, I'll tell you about my elderly mum and anaemia.
Make an appointment and go with her. In my experience, gps tend to be more attentive if there's another person there - particularly when they're taking notes.
If you're still not happy, I've found the best service I got was when I wrote a very polite letter outlining mums treatment and the relevant outcomes up to that date. Just for their information. I had a doctor on the phone within a couple of days sorting out her treatment.
At my gps all the gps, bar one, are lovely, as are the nurses and receptionists. It's not like they've relegated my elderly parent not to be treated. But I have to be onto them all the time or she just gets put on the back-burner. And there's always the old standard of just keep sending her for more blood tests.
Get her to sign a letter giving you access to her records and giving you authority to speak to them regarding your mum abd her treatment. As she gets older, it will make your life so much easier.

@MarshaMelrose It’s good that your DM has you for support, sounds like she’s needed it. You sound like a wonderful, caring person.

My DM will be her usual awkward self and will tell me she doesn’t need me to go with her and there would be no way, currently at least, that she would want me to have access to her records etc. She said she’s going to make a telephone apt, think she actually needs to see the GP f2f!

I will also be my usual awkward self and insist she needs to see the GP and make sure she does it!

@WiseRobin That’s what I would have expected for my DM who has hardly needed to use the NHS throughout her working life.

Between this and the 'is she not worth bothering about', I feel you're being very dramatic. It would be unusual for a 75yo ex-smoker to be 100% healthy. I'm sorry you're upset about the letter. Chances are that's the letter to patient and her GP has received a different letter with some sort of instructions, e.g. start medication. Contact them on Monday but stay calm about it, don't fly off the handle about something they might not have had time to action.

@HouseHelp23 I’m only sounding off on here, I wouldn’t have and never have been a shouty, get me what I need, kind of person. I probably was being a bit dramatic last night, a couple of gins and I’m ready to take on the world 😆

The letter is addressed to my DM’s, GP surgery, so her GP has had the exact same copy.

It could be that her GP would follow this up anyway, but I would have thought that the least the letter could have stated was to make an appointment to see your GP, making it clear that there needs to be a follow up appointment.

That’s what happened to be when there was incidental findings following an MRI!

Just because the letter doesn't mention follow up/onward referral doesn't mean there won't be one. Happened to me, and I'm much younger than your mum!

OP

In the nicest possible way what do you expect the GP to do? She has no symptoms, or you have not mentioned any, from the gall stones and the calcification.

Calcification is not the same as atherosclerosis and is common particularly as we age.

Vast swathes of the population have gallstones. Studies have shown that the majority of patients with asymptomatic gallstones/those detected incidentally don’t go on to develop symptoms.

Regarding the coronary artery calcification. Unfortunately if your mum was a smoker then that’s one of the consequences (you haven’t mentioned if she has any other lifestyle risks). Again its incredibly common (almost all UK adults over the age of 60 will have a degree of calcification) - if every person was referred to cardiology because of it the system would collapse. It would be wise to make an appointment with her GP to talk about risk modification (maybe statins, lifestyle changes etc). It may be a cardiology appointment is required but it usually wouldn’t be a first line thing. Whilst waiting for the GP the British Heart Foundation has some helpful information on risk factors and what atherosclerosis (which is what is causing the calcification) actually is. The British Lung Foundation will also be helpful to learn about the emphysema.

The GP may well have it on the radar to address but remember they’ll be getting paperwork/results for potentially thousands of patients every week. There’s always a delay whilst it filters through too (discharge letters from hospitals can take a week or two before getting to the top of the pile). As your mum’s results didn’t show anything urgently actionable it’s appropriate that it’s a lower priority job than those that are. It’s definitely not that ‘she’s not worth bothering about’ - if that was the case they wouldn’t have done a scan in the first place would they?I’m not sure being so hostile towards the GP/health service is going to help anybody. Remember the radiologist won’t necessarily have had your mums clinical history when reporting either. It’s likely the referral will have just flagged up it was screening, smoker, age X etc. For all they know your mum is already on risk modification medication/it’s a known problem. If they automatically added see your GP on to every letter then the GP service would be even more hopelessly overwhelmed. The reason the letter goes to the GP is that they are better placed to make a decision about follow up (unless the scan had found anything urgent - say an obstructive gallstone that needed a surgical opinion), unfortunately that takes a little bit of time.

This test is, as I understand part of the lung cancer scree program. The reason it says the other fundings are " on actionable" is because they don't meet the criteria for the lung cancer rapid access pathway. It's simply a binary yes/no screening test

By all means however discuss the coronary artery calcification with her GP however

Thanks everyone.

I think reading the word ‘severe’ made me panic.

Will see what the outcome of the GP appointment is and hopefully DM will have a clearer picture.

My DF died aged 60 of lung cancer and his final days were awful, we had a pretty grim experience in the hospital ward, not a cancer ward or a hospice, as they were full. He died within about 10 minutes of us visiting him on that last day, unfortunately no one seemed to notice how ill he’d become so none of us were called, therefore my brothers turned up too late. If we had been called in the morning we could have all been with him.

Therefore, I just want the best for my DM! It’s good that they’re providing these lung checks but I really do think that any incidental findings should have clearer follow up instructions for the patient on the letter sent out!

It's lovely that you have got all these reassuring posts. I can concur that the gps have been lovely with my mum. But I would never rely on things getting done automatically. Always allow so many days for something to be actioned and then ring to check what's happening. Anything you're uncertain about, query it. Make sure you understand exactly what is happening, why she is/isn't having treatment and their plan for the future.
Having said that, it's easy for me to say and so much harder for you to do when your mum is very independent.