WIBU to still show up to the hospital appointment?

[Cockapoosforlife]

I have a long term health condition which impacts my life considerably, with a sizeable impact on my vision. I have had a hospital appointment scheduled for a while to review the conditions impact on my eyes and to decide if surgery is necessary, this was to take place tomorrow morning. I have just had notice from my mother who I haven’t lived with for a while that this appointment has been cancelled.

WIBU to still attend as they did not inform me and this is the only time I can do the appointment for a long time?

For context I work in quite a high pressure field with my work scheduled far in advance (think 5 years). It also involves working across multiple countries and time zones, to reschedule would place substantial delays on projects. For the appointment to also not go ahead it poses a considerably high chance of total vision loss, as well as raising the risk of unplanned surgery.

Is your mum down as emergency contact? That could explain how they made the mistake, if her phone number is under your name

I am a long way away from 18 and wish I had my youthfulness again 😅😂. I will definitely be making a PALS complaint, and asking for the appointment date estimate as there is some of my work which can be begrudgingly rearranged but others which cannot.

I will also definitely ask that the case is reviewed by a consultant as he had concerns last time my case was referred. My condition is uncommon and typically doesn’t fit into the NHS clinics well.

I'm guessing the clinicians are not available. So they will just tell you there's no one to see you

She might be, I will be checking and updating it to my other half if she is. They do have my contact information as I updated it a couple of years ago, but could see the mistake.

Part of the issue I have is the clinician who they first set me off seeing always ends up referring to a more senior staff member.

I attended a hospital appointment recently that went ahead as scheduled, and then the next day I received a letter in the post cancelling it! Thank god it didn’t turn up on the day of the appointment (it was posted the day before) or I wouldn’t have gone and would have been put down as a no show. Call asap tomorrow morning and check it isn’t a mistake!

I am in my 30’s, but have been attending this hospital since I was a toddler. We don’t live together and haven’t for a while, we have the same last name but different first names. She has attended the hospital but only as a private patient whilst I am NHS.

What I think happened is they have pulled the wrong contact information for me, they have my up to date contact however.

Why do they even have your mother’s number?
Are you an adult?

I would call first thing and see if there has been a misunderstanding and then raise the GDPR issue with them of texting someone else.

I will be calling tomorrow and checking, the initial doctor they always put me with always ends up referring to a more senior clinician. The clinic I am in is not designed for people like me but is just where they put me.

I am in my 30’s, I have been at this hospital however since I was a child and my mothers information was in the system then.

Is the cancellation text definitely meant for you? My experience of such cancellation notifications are that they are pretty generic.

Maybe your mother was scheduled to have an appointment, didn't get the letter, has just received the cancellation for herself but is presuming that it's actually for you ...

I will be talking to PALS, they have no reason to contact my mother. I am an adult and have been for a while.

I don’t think so, she doesn’t attend this hospital. It was very generic the text message, she only thought to send it on to me as I mentioned to her previously that I had an appointment scheduled.

I will do, in the clinic I am always seen by a junior member of staff before they refer me back to the consultant due to the conditions nature.

Just this evening. The difference it makes to me being abroad is that the condition is getting worse, if it were to deteriorate suddenly I will be stuck in a very expensive country with a very expensive medical condition.

You could try, it's a different circumstance but I had baby brain last year and went to a hospital appt the week before I was meant to, and the lovely receptionist squeezed me in. They may have cancelled because there'll be nobody there though. I guess you have nothing to lose

Believe me I am going to be asking about private options and choking down the cost as my medical condition is not covered by my insurance. The clinic is run with multiple doctors as it is typically for another more common condition, they always make me see a junior member of staff who immediately gets a more senior member of staff due to the nature of what I have.

That’s my philosophy with it, I don’t have anything to lose by trying tomorrow.

Unfortunately these appointments are not in the NHS app otherwise I would be checking there too. I can only see GP appointments in there.

I don’t think she is, she sent me a screenshot of the message and it looks genuine.

We think she was contacted as her contact information is on file for when I attended as a child. It seems like the cancellation notice is genuine but very non specific.

Had to scroll a long way to find someone who agrees that this is potentially a breach of your patient confidentiality and therefore of their own information governance (sending a text to the wrong person). When I worked in a hospitals scheduling setting the importance of this was drilled into us as we had patients who wouldn't want family members to know they were ill, let alone have medical appts and when / where.

Would second contacting PALS as a first resort and then have a read of this.

transform.england.nhs.uk/information-governance/guidance/personal-data-breaches/#service_user

And please don't go to the appt - there will likely not be space for you on the list. Ring them and speak to them about it.

I tried that but unfortunately the bookings line was closed before the text message was sent. Everyone else has gone home for the day, the main part I am holding out hope for is they always sent me to a junior clinician who realised the nature of my condition and refers to a more senior member.

I will be talking to PALS about it, the trust has my up to date contact information as I checked last time I was there.