Is this normal NHS practise ?

[LJC1234]

Just to confirm before I start this post is in no way to bash the NHS as I think they are brill but I'm slightly concerned by my current situation and want to see if what I'm experiencing is just standard practise .

Long background but for info For years I have been plagued with gastric issues and around 3.5 years ago I was finally put under a gastric consultant and my issues were investigated. I was half way through a number of tests and I was due to have a number of procedures when I fell pregnant . Due to the invasive nature the investigations were paused and then well covid happened . At the end of my pregnancy (summer 2020) I received a letter explaining I would have a telephone consultant in feb 21 to discuss my options

I had my call and the consultant was amazing. None of the delays were anyone's fault but she made me feel so reassured that things would kick off again and literally 2 days later I got letters for all the testing to begin again. I had a number of tests end of March beginning of April 2021 and I still have one final test to have which I am waitlisted for . I assumed because I was on a wait list that's why I had no results from previous tests or nothing was found and my gp had no info either .

So now the bit in mainly wondering about . Today I got a letter in the post which is a letter to my GP and an appointment for me.

The content of the letter confirms that on the 8th April the test I had was able to confirm and diagnose I have a disease . It's not life threatening but it is finally a diagnosis. The letter confirms I need to immediately start treatment and includes a prescription for drugs I will need to take multiple times a day but I can't file as it's for my gP not me . The letter also confirms to my GP I will be provided a appointment to discuss how my treatment is going. There is also a letter to me confirming my appointment for January 2022 to discuss how I am getting on with treatment .

I guess my question is is this normal. No ones told me I have results. No ones talked through what this looks like. No ones told me what to expect I've just been sent a copy of a letter and told I need to take medication multiple times a day to discuss in January.

I am obviously going to call my gp first thing to discuss but the likelihood of being able to speak to my gp anytime soon is slim.

The only reason I know it's not serious is I've used google and found some supportive websites etc

I'm really thankful to finally have a diagnosis but I feel a bit baffled by how I've found out but maybe this is normal?

Well it's not just a letter to your GP - you're copied in on it precisely so as to keep you in the loop. It's normal for the consultant to tell the GP what to prescribe, so don't worry about that - the prescription will just be issued by the GP.

What doesn't seem normal in my experience is not to have had a follow up appointment, or at least phone call, with the consultant..I would expect to find out through that, rather than cc'ed on letter to GP. That said, I've had extensive pre-pandemic NHS experience, but none during, so I suspect that's as good as it gets at the moment. I suspect they'll expect the GP to talk you through it.

Make sure you push as much as you need to for any support/info you need - even pre covid this was needed, and I suspect is even more necessary now. Hope you feel better soon with the correct diagnosis and meds

Sorry, I feel like my answer maybe underplayed things a bit - it's really crap to wait two months for tests and then find out a diagnosis by being cc'ed; I don't want to think you don't.have the right to feel discombobulated by that! All I was trying to convey is that I think that's probably how things are with the current state of the NHS x

It is poor practice not to give a patient their diagnosis "in person" . It should not be something you learn reading a letter written to somebody else. There is no excuse for that.

Clinic letters are to your GP. They Cc you as a courtesy, but they're addressed to the GP and if you asked not to be cc'd they'd keep sending them to your GP. If they were writing to you it would be addressed to you with your GP cc'd.

A clinic letter should contain the information discussed in your appointment in order to update the GP - not for you to learn it for the first time! Nothing in a clinic letter should be a surprise to the cc'd patient.

I'm sorry you weren't treated in a more humane and respectful manner but hope things improve for you now.

@BabycakesMatlala

Sorry, I feel like my answer maybe underplayed things a bit - it's really crap to wait two months for tests and then find out a diagnosis by being cc'ed; I don't want to think you don't.have the right to feel discombobulated by that! All I was trying to convey is that I think that's probably how things are with the current state of the NHS x

Thank you and don't worry at all .

Yes I did wonder if maybe this was how things are currently due to the pandemic .

I'm reassured that other people think it is a bit odd not to have had an appointment or call with the results .

Yes agree with @lilyofthewasteland
You have been copied into letter to GP, which is the norm now, so you have all the relevant information. HOWEVER you should have first been given the diagnosis and discussed treatment options with the hospital consultant. They are tending to do a lot of these follow up appointments over the phone at the moment. It would appear they have missed out this stage with you.
Sorry this has happened and I hope your GP able to help

I would phone your GP and ask for an appointment to discuss the clinic letter.

@HotWeather

I would phone your GP and ask for an appointment to discuss the clinic letter.

Yes! I will do this! Thank you

Yes it is noprmal. Not great but to be honest it's probably an admin error where the letter was sent and you were copied in without the person realising you hadn't been told.

I think given the state of ongoing care at the moment this really isn't something to worry about. I don't mean to be dismissive, but it otherwise sounds like your care is pretty good.

Personally I'm not a fan of GPs and I have a good one. I'd call the consultants secretary and ask for an appointment or a call to discuss your diagnosis.

...the lack of personal approach in telling you info is potentially because ... covid ... crisis in health care right now, still, enormous wait lists & backlogs

Please follow up with questions you may have

My partner received a cc'd GP letter from a consultant, telling him he had a serious potentially fatal heart condition and a mass in his lung - no warning or face to face appointment just the letter!

He'd had a scan to rule out the possibility of anything serious and the consultant up until this point thought it was muscular, so to say we were shocked by the letters contents is an understatement....this was in 2019 so precovid.

It happened to someone I know that they first found out they had a serious but treatable condition from the copy of the letter they received in the post which had been sent by the Consultant to their GP. The Consultant had taken routine blood tests as part of annual monitoring for something else and then not written the letter till several weeks later. Xmas had intervened!
The GP failed to follow it up at all and when they first raised it with the practice, the receptionist fobbed them off and told them to wait to be contacted by the GP.
In a joined up system, the Consultant should have broken the news even if just by phone i.m.h.o. It was quite a shock to the person concerned and struck me as unusual; but I guess that is better than risking never getting the results yourself because of the bureaucratic nightmare that is the NHS.

Mine was pre-Covid too.

It’s not great practice - I’d always phone a patient up if I had something to tell them that we hadn’t discussed in person.

But on occasion, I haven’t been able to get hold of the patient after a couple of attempts, so I’ve had to write instead. I write a lot more detail though, and pitched at a layman’s level, with an offer to ring them if you want to discuss more.