Failing Surveillance Care

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Hi

Has anybody experienced repeat failings with their surveillance care. Last year the admin in the hospital I am under forgot to send out my appointment letters approx. 3 months overdue. Wrongly I assumed that the process would be slick and almost fail safe given the potential consequences. I called the hospital about and they said because they hadn’t heard from me that my appointments were down as being missed.I explained I had never received the letter to which they said their fault it was on the system but it hadn’t been sent out. This year I had my chest x-ray on 10/02/22 and bloods on 22/02/22 due to previous failings I called mid March to inform them I hadn’t received my letter. The hospital said they hadn’t received the results from the x-ray department yet (5 weeks after I had it done). A further call with the hospital today and they said they had received the x-ray result but the Dr hadn’t yet reviewed them (2 months after the initial x-ray) prior to these issue I had always worked on the basis if I hadn’t heard anything within 2 weeks it was ok. I do find the whole experience worrying that I almost come across as being a nuisance, however from my experience the follow up care is poor. When I was diagnosed the system worked and I was seen and operated on within 2 weeks.

Curious on the experience of others, is my experience a one off or is surveillance merely ticking a box?

  • yeah - same here - after 5 years on surv. i've had on the 4th year, things slip by a few months, and actually missed an xray. they then scheduled a full CT from chest to abdo. when i should just have abdo.

    since then i've had bloods slip a lot also, letters saying how it should be me organising it with the GP BEFORE my 12 monthly check, then dont get the 12 monthly check and a letter with around about 1 month delay..........

    Apr 2016 - betaHCG raised --> Orchidectomy- Left Testicle removed - Stage 1 100% Seminoma Surveillance only.

    Surveillance : Year 2017 - CLEAR ./ Year 2018 - CLEAR / Year 2019 - CLEAR / Year 2020 -

  • Yes. Absolutely. I received an appointment letter 6 weeks after the appointment.  The letter was written in time but just wasn't posted.  Luckily I was available when they called for the phone appointment.  Twice I've received appointment letters in time (just) but my bloods weren't booked.  Luckily my local phlebotomy services are really good so I just showed up, showed them the results of my previous bloods so they can see what tests are required, and they just do them anyway. They send some letters to my old address and some to my correct address. I've told them to update their systems several times but it keeps happening.

    Whenever I point out these issues during my appointments they are very blasé about it. Luckily I'm not particularly anxious as my treatment when to plan, but if I was in a more concerning situation it would be horrible.

    PALS Patient Advice and Liaison Service will give them a kicking for you and they will get oncology to apologise profusely. Unfortunately it doesn't stop it happening again next time 

    I think the only answer is to take some ownership of it and keep on their case, but it really shouldn't be that way.

    Best wishes

    G