To think that the NHS should phone you with a diagnosis before prescribing medication?

[illfallforward]

My mum has just been called to say that a prescription is ready for her. Turns out it’s a chemotherapy cream for skin cancer. Now fair enough it’s not the worst diagnosis to have, but surely someone should speak to her before she finds this out?! I’m just flabbergasted

This. I have a brother and a friend who are regularly prescribed Efudix, which I suspect is the cream she's been given.

It means it's mild, but somebody should have told her that.

I have also used Fluorouracil 5, Efudix, myself, on horse skin cancers.

Can secondary care (the hospital) prescribe there electronically to standard pharmacies? Where I work we can’t, only to the hospital pharmacy. If we want a prescription to go to a standard pharmacy for a patient we have to ask the GP to do it (stupid system but sadly the way it is).

Hosp will write to her gp. She can make an e consult and ask gp to call her if she worried about starting the cream .

Unfortunately this is standard practice in the NHS. My nan was sick a while ago, went to the go for some blood tests, was given a hospital appointment in ward B3 via letter. It was only when she arrived at ward B3 that she discovered it was a cancer ward. She broke down in hysterics when she saw the sign and had to process that in public, with no privacy and no time to process before her appointment.

Who the fuck invites someone to a cancer ward without telling them they've got cancer first!? Disgusting treatment. We aren't people to then anymore we're just numbers who should be grateful.

my father slipped in a car park and broke his leg was taken to a community hospital near where he lived. The nurse there dropped him hard onto the toilet and chipped his coccyx. When he had to go to the general for the leg cast to be checked they told me there was an ambulance coming for him but no nurses to go with him so I went.
They kept him waiting ages in which time no one would help me take him to the toilet. eventually the nurse came and said they would take him to check his cast while I was asked to go to see the specialist. odd but in I went and saw a Mcmillan nurse in there which rang alarm bells as not that long before mum died of cancer. sat down Dr said oh well all considered we estimate your father has a month to live. i sat there with my mouth open and said what for a broken leg. I knew before he broke his leg dad had been to see the GP with a cough and had an x ray but nothing came of it so we had just assumed nothing to worry about. But it seems somehow no one had told dad about the specialist or the results. I was devestated but did not want to upset dad so all the way back i was cheerful and got him back to bed then rang my sister. we both cried and hugged each other.
As it was we got him into the Hospice who were so kind to us all. Dad actually lived 2.5 months due i am sure to the care from the hospice. When the Dr came round he told Dad he had asbestosis from the building sites he used to work on. this lovely man did not deserve this. When the Dr said you do understand that soon your life will end dad just smiled and said well I have had a good life and at least Ill be with Peggy (My mum) such a brave wonderful man I was proud to call my dad and he had a very hard life too

They are.... but only once the consultant has approved the letter so it may have been dictated at the same time as the prescription was raised but still be waiting to be approved hence it's not visible in the app. The best thing would be for your Mum to ring the consultant's secretary and ask if there's a letter on the way as she's been issued a prescription.

My father had the same cream, and at his consultant appointment, the prescribing (for other skin areas) was said as a passing comment which he missed, but I heard, it was then referred to in the letter which arrived a couple of weeks after the prescription.

The hospital will send a report to her gp and it will be entered in her notes. She can then ask for a copy, no question. Sounds like there has been a delay in that coordination and the pharmacy is ahead of the game. Sorry she’s upset.

Your hospital should have a PALS team for complaints @illfallforward

If it was the hospital outpatient pharmacy that dispensed this medication and called your mum, I would contact PALS and complain about the way this has been handled. She should have have the diagnosis and treatment explained by a specialist before the cream was prescribed.

It will probably be on the hospital app. It's annoying having to have two apps but, certainly in my experience, anything relating to hospital appointments and hospital treatments is shown on the hospital app and not necessarily included in the NHS app. It will be NHS Patient Portal. My hospital uses "mycare". Phone the hospital, or ask Google, which portal it uses, then your mum needs to set up a login.

Yes. I’m talking about the hospital app.

It’s gone to the outpatients pharmacy. She is very much still under the care of the hospital.

For years after my daughter was born I was never told I had CKD. Then the GP placed prescribing with the pharmacist, who told me in a phone call whilst trying to put me on yet another medication that “people with kidney failure tend to have high blood pressure “ and I said WHAT? She read off my notes and I asked Why Didn’t Anyone Tell Me? The pharmacist realised her mistake and apologised. I made an appointment with the GP and asked him why he thought he didn’t think this fact was an important one? To which he replied, it hasn’t got any worse since (DD) was born so we surmised it came from the pre-eclampsia I had. I do have other minor health issues but this: they didn’t tell me for 16 years!

Results are not always in the section where you might expect to find them. Mine were in "messages" and "documents".

The amount of people acting like it's normal and acceptable to just look for results in an app, under a folder, and then just be okay with a random, surprise prescription is so mind boggling.

No wonder the NHS takes our passive population for a ride. We practically beg for the abuse!

I'm sorry about your mum and her experience, OP. It's completely unacceptable and inhumane. I would complain but I don't know how far you'll get. They are conditioning us to accept shit service or robotic service over the option of no service. As you can see, no one seems to care.

I agree with you OP, I wouldn’t be as ok with this as PPs. You shouldn’t have to search through an app or read the box the pharmacist handed over to find out what’s going on. Somebody should have explained to your DM what her diagnosis is and what her treatment would be. Hearing you’ve got skin cancer, however mild, from a pharmacist when you’re picking up a prescription you weren’t even expecting is unacceptable.

You get a notification. I don’t know why people are so eager to tell me I don’t know what I’m talking about when I use this app myself

If it was secondary care that saw her, investigated and diagnosed her- they are responsible for contacting the patient and advising of the outcome, not the GP.

I do think this is worth raising with the hospital, communication has broken down somewhere and they need to be aware of the distress it has caused to try to prevent it happening again to someone else.

I wish your mum well

Actually I’m not surprised. Two years ago I had to tell DH that he had terminal cancer - found out by reading his discharge letter I was to take to his GP. No one bothered to actually sit down and tell either of us. GP was appalled.

Thank you.

Dermatology won’t come back to her. The GP have (predictably) said it’s none of her business. She’s really concerned - she doesn’t know how to use the cream, what she has, or what the side effects will be. It’s just not good enough

100%. No one should have to search for a diagnosis on an app.

Of course someone should have spoken to her, if only to avoid a lot of anxiety and lengthy guesswork conversations as to what's going on!

Bit shocked at people suggesting this is a non issue tbh. Communication with patients is part of codes of conduct for HPCs for a reason!

I think this does warrant a complaint, but the first priority is to establish what's actually wrong, as others have pointed out there's a big difference between different types of Ca.

Even though this has all happened via the hosp I think it would not be unreasonable to contact her GP, especially if you can't get hold of the hospital. GPs sometimes receive hospital communications before patients do, and usually have other channels through which they can contact hospital Dr's to find out what's going on.

Honestly, for anything that isn’t absolutely dire, I just want my treatment to be as fast as possible. Get the prescriptions moving and the lab results rolling into the portal.

A quick google explains things if I have questions, but if I’m waiting on results, I’ve already researched my possible condition anyway and typically know what the responses coming in mean.

It’s much worse to know you are sick and treatment is delayed over the weekend because the doctor is a bottleneck.

I don’t think it’s fair to describe other care as a “bottleneck”. As I’ve said she has other questions which need answering

I genuinely don't understand how some people think this is ok.
It is absolutely not ok.
Discovering you might have cancer by googling the medicine you were prescribed is awful. No other way to describe it.
My nan is one of the older populace that doesn't have the Internet. She found out she had terminal bowel cancer similarly, receiving an appointment for a blood test, thinking it was to do with cholesterol or thyroid, found out it was to monitor if there was internal bleeding due to the tumour. She didn't even know there was a tumour.
Thinking more widely, it has massive implications on things like insurance, imagine a claim being denied because you didn't disclose a new diagnosis which you weren't even aware of.