Follow up appointments

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Just wanted to highlight the struggles the hospitals are having at present in all departments regarding delays with appointments..

During a phone call with my husbands specialist nurse yesterday regarding an issue with his JEJ  tube I asked why after six months post esophaghectomy surgery he hadn’t had the first follow up monitoring phone call /appointment? ..These are meant to be scheduled for every three months in the first year post surgery ..So four in total …She informed me she would look into it as she didn’t know what had happened and I was correct in the fact he should have had his first one by now ….She phoned back after an hour and had scheduled an appointment for him today to see his dietician and a DR regarding his JEJ issue and had managed to schedule a full face to face monitoring appointment with his surgeon on the 10th July …SEVEN months post surgery ! ..Maybe I should’ve phoned earlier but I didn’t think due to the seriousness of my husbands illness that I would have to chase appointments up ..as it would be automatically scheduled by the hospital ! ..and come to think of it ..it was never fully explained from what date the monitoring appointments would commence only the frequency of appointments…

On his discharge from hospital in December we a letter clearly stating how important it is to attend the post surgery appointments at the hospital or take the phone calls if that’s the method used …No exact dates but It clearly states the frequency  of the appointments over the full five years after cancer treatment has ended ..These are obviously meant to pick up on any issues and possible signs of recurrence of the cancer …

To say I’m disappointed in the after care is an understatement..We were led to believe a full extensive after care package would be available but from our experience this isn’t so ! ..I know the NHS system is struggling at present and all hospital departments are stretched to the max but it’s no comfort to find that after going through such a life changing experience you seem to be basically left to fend for yourself and deal with the aftermath on your own. 

Apologies for having a moan because we’re all going through the process but I’ve had to vent …We are very grateful for everything that has been done for him and his medical team have been wonderful throughout .but I can’t help feeling a little angry and scared by the lack of after care , 

My husband is now on his way to have his JEJ line repaired or removed ..He’s had it in for nearly a year and I only found out yesterday it shouldn’t have been left in so long and should’ve been replaced with a fresh one six months ago whilst he was having his surgery ..but it wasn’t ! (He had it fitted in July 22 during his laparoscopy )  This should  have been dealt with at his first follow up appointment which he never received ! 

I’m feeling totally deflated this morning ! 

Wishing you all the very best in your own individual journeys  …regards J 

  • Hi JPM.

    You are totally justified to feel peed off and angry.

    I'm only at the beginning, but am totally reliant on my trust of the medical team providing my chemo, surgery and after care.

    While I support the NHS in the desire for better working conditions, more staff, pay and equipment. I definitely don't agree with their right to strike. Some professions should just not be allowed to. They have to find a negotiated resolution. Political I know but the governments lack of investment and oversight with the NHS is to blame. They can find 2.2 billion pounds a year to house illegal immigrants. Sorry, probably shouldn't be doing this on here.

    I hope your husband up coming meeting takes things forward for you all. I'll be thinking about you when I'm talking to my team about after care.

    Best regards Geo.

  • Hi Geo ..We’ve found out today that errors have been made in my husbands after care ..Follow up appointments haven’t been scheduled ..Dietician follow ups not carried out and his JEJ tube should’ve been removed in February but wasn’t ..Lots of apologies and investigations are being launched into what went wrong ..He’s the subject of a meeting next Tuesday and an emergency appointment is being made to have him admitted into hospital for the removal of the JEJ (only a day case) …They’ve admitted it’s totally their fault and thanked me for bringing it to their attention …He’s finally received his first face to face monitoring appointment to take place on 10th July ..Seven months post surgery !!!! .. It’s totally unacceptable…This Government need to get their fingers out and start supporting the NHS which is sadly  on its knees !!! 

    regards J