As some of you know I had my PVR in July. Cutting to the chase my discharge instructions said follow up with the congenital cardiac surgeons in 6-8 weeks time-these were wrong my cardiologist already said she wanted the appointment with her not the surgeons but the Advanced Nurse Practitioner Cocked up the discharge instructions. Credit to the hospital they scheduled the appointment according to the discharge instructions for 1pm last Wednesday and I made plans to return to Uni for a group coursework meeting in the evening. (Allowing 3 hrs for the appt).Then 3 weeks later hospital send a second letter for a 3pm Appt same day but this time with the congenital cardiologist. They cancelled the one at 1pm with out ever informing me (I found out by rising the secretary confused, basically the cardiologist wanted me to see them not the surgeon) and no prizes for guessing that I could not attend as I had already booked my train around the first appointment. No apology for the change or for the mistake the hospital made, [For those questioning my group have already been granted 2 extensions on the coursework for my treatment it did now need to be done].
I rescheduled it for 27th September however sadly I was informed today I have a compulsory lecture same day same time as the appointment. I knew I had this session and was really looking forward to it- it only runs once a year and one of the extra circulars I wanted to do depends on me attending it. May I say that moving to Uni permanently tomorrow the trip is 7hrs round to attend. So I rang the hospital again to cancel. They were Fine with cancelling however the lady in the booking centre claimed I had now cancelled it twice (kind of true but they royally fucked up the first time) so now not allowed to reschedule it and would be discharged with out post op follow up. (I know this is not true as I read the trust policy it is more complicated than that). Part me feels guilty for prioritising something else but Uni have moved so much stuff and made a number of allowances around the constant changes in the process already- really did not need to add administrative mess up to it.
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Midgeymoo17
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i have had to cancel a few myself and yes have felt some guilt. I have tried to give as much notice as possible but as you have found sometimes circumstances necessitate this.
I do feel you have got a rather rough bargain there though, can you not write and explain what has happened? I had one appointment cancelled on me on Dec 23rd with just 24 hours notice
I am not worried particularly about the discharge thing. It is common in most hospitals that if the patient cancels two of the same appointment twice in a row that they are flagged. In some hospitals it means automatic discharge- I actually read my hospitals policy firstly it actually states "more than two" and then states that the system will request the consultant review if it is safe to discharge the patient with out the consultation. I suspect my consultant will never agree to that as I have tried it in the past also the European Society of Cardiology recommend all patients with my congenital defect be reviewed by a specialist cardiologist a minimum of bi-annually. Sadly due to the complex and diverse range of congenital heart defects that GP' s honestly have no training in it is very unusual for a congenital patient to be discharged back to GP care. This said I e-mailed my clinical nurse specialist to alert her to the slight problem we have as I do feel (although it is now going to be like 6 weeks late) that we should have my post op check.
I had a cardiac rehab appointment cancelled with 20 minutes notice today but this was due to staff illness.
No I go to uni in Manchester and have congenital heart disease. The congenital team from Manchester are understaffed and moving their own patients elsewhere (to liverpool and leeds) . Also to be honest I need to keep my cardiac team where there is a functional bowel disease team and these are like gold dust (I think there are only 3 country wide) .
With regards to being unwell of course then I would make the trip. With regards to acutely unwell one would go to A&E if this happened to be the Manchester Royal Infirmary the congenital team (they can not turn away acute admissions) would stabilise me before transferring me by air or road home.
I actually have really good contact with my cardiac team. There is one nurse in particular who I e-mail a little too regularly, did a lot with regards to finding a functional bowel specialist for adults to manage the side effects of the drugs used in my procedure, met me at my last appointment with my paediatric cardiologist before moving to the adult hospital so I had a familiar face the first time I was seen by the adult hospital and has always gone out her way to find outpatient appointments and test appointments in University holidays. That is partly why I felt so guilty for cancelling this one is she made it for me but there was very little I could do about it and I said at the time the start of term was subject to change.
Yes I can defo see why you would want to stay with your regular team.
I know what you mean about feeling guilty though, I felt terable on Monday.
Mainly due to it meaning not giving any notice.
The lady I spoke to was really nice and understanding aboutbit though. They sorted me out a new appointment straight away.
Well done and good luck with the uni course though 😊
The right to cancel is still with the patient, the issue is non-attendance and failure to inform so that the appointment slot could be opened and filled by someone else.
I have successfully argued this with hospital administration teams in the past. The key point is to remind them that the failure to follow up on discharge recommendations is viewed as neglect of their duty of care, they can't defend this in a civil setting.
The decision not to offer a rescheduled appointment is with the clinician not the administration team. Therefore, I encourage people to write to the senior clinician which has always resulted in a fresh appointment.
Sorry if this sounds terse but remember it is the clinician that gets into trouble if there are complications that could have been avoided.
Oh and the first instance was scheduling error on their part so you didn't cancel they altered the arrangement so that is their problem not yours. Most patients try to fit in or accept they are in the wrong, systems have contingency and fail safes to prevent these issues, somehow the hospital failed to deploy them.
Thanks. As I said before about the discharge thing I know it not to be true as the trust policy states that any patient who has cancelled two appointments in a row is to be reviewed by the consultant in charge of their care with regards to whether discharge with out consultation is safe. And to be honest I gave a week and a half notice on this occasion and 3 weeks that the altered time of 3pm was not suitable.
I have written to my clinical nurse specialist and pointed out the problem. Normally she is fairly quick to reply but has not today so I suspect she was not at work.
I am prepared to stand my ground I quite clearly stated to the woman that yesterday marked 8 weeks since the procedure and that discharge instruction was 6-8 weeks. So the appointment was already overdue due to their scheduling cock up. I accepted a clinic appointment at 10 weeks only because it was the most convenient of what was left after their scheduling cock up.
I have problems with this a lot. As well as the cardiac team (for general appointments, plus ECGs and warfarin clinic) and other conditions require me to see a lung specialist (plus lung function tests at least once per year, and sometimes xrays inbetween), an endocrinologist, the team at the eye centre, and the sleep ap team. That's without visits to the GP and any tests they might want to undertake. It seems like all my appointment comes together too. I work in a nursery so the amount of staff we have is not just important but a legal requirement. My manager is pretty understanding but I tend to try and move appointments when they are scheduled at lunchtime because I know that covering everyone's lunch is difficult even without people being off. I feel bad about cancelling the appointments but if I don't try and change them I feel guilty for the impact it has on my work and collegues.
I've had a lot of appointments rescheduled by Manchester, and due to the recent problems, I've elected to follow their congenital surgeon to London for PVR rather than deal with who they put me with in Leeds/Newcastle/Brum.
They should definitely let you reschedule, as it's not an urgent appointment (i.e. Can be done anytime) they should fit around you as much as possible.
This is just a though but maybe if you call it rescheduling instead of cancelling on the phone the red tape won't kick in with the booking centre. They should see that despite the NHS being under pressure, rescheduling means someone else can be moved up the list in your place.
I wanted to reschedule but due to it being the start of term I really had no idea when I would be free. And to fair although I moan about the appointments booking part the issue is that I have an Autism Spectrum Disorder and find the whole process of making appointments and breaking my routine unusually stressful. The team themselves do say just cancel/ reschedule if not convienient but that instead I find challenging.
I find it intresting you opted to follow Manchester's surgeon. As you can probably tell by my post I am not under Manchester but am under one of the teams you refer too and they are absolutely excellent when it comes to the cardiac care. I have had issues with them with respect to my very rare congenital GI issues.
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Made to feel guilty and sorry for having a cardiac arrest
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