Hi, my name is ChristineC1! Agoraphobia and hospital transport issues

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  • ChristineC1
    ChristineC1 Online Community Member Posts: 21 Connected

    Hi MW

    Thanks so much for your kindness. And the hug! I knew I wasn't the only one but it's hard to not take it personally. My sis read that there is an 18 day rule of booking in if an op is cancelled or doesn't go ahead for whatever reason. I'm assuming that is why I was given the date and then to take it away puts them back in control. There is a 'patient choice' where I can go back to my GP or dentist to explore other options, like a referral to private practice if NHS fails to deliver. But this presents layered issues such as waiting lists, transport (re my agoraphobia), how specialised they are etc. Devil I know or start again?

    I had to call the Macmillan nurses just to talk to someone and she was really worried about the state I was in yesterday. I had to reassure her that chatting it out helps me to move forward, even if the situation doesn't change. I had forgotten about the strikes etc and the knock effect. I'm sure the staff organising surgery have lost sight of the patient and the psychological impact delays have. When I asked the team leader what I would need to cut it out of my face she didn't even respond. I hope they never find themselves in this position.

    Going to try some garden therapy today, even if it is to clear up the leaves from the fig tree. I've missed the transition into Autumn. Will try to block it out this weekend but not sure I can. Keeping the house going is an achievement at the mo.

    I hope your friend is recovering from the impact of the experience. The older I get the less resilient I am to life's knocks. I just want to get it over with so I can get back to being me again. But I will be contacting the Ombudsman. I know my agoraphobia complicates issues with transport and sis but the surgeon was fully aware in August, and of the delay up to that point. All I can do is hope that they will relist me.

    Will keep you posted.

    😫xxx

  • MW123
    MW123 Scope Member Posts: 1,584 Championing

    @ChristineC1

    That 18-day rule’s a bit of a loophole, really. They don’t have to give you a proper appointment, just offer one. And that “offer” can be a slot that’s already full, gets cancelled, or isn’t even suitable. As long as a date goes into the system, even if it’s pulled straight after, they can say they’ve hit the target. It’s about keeping the stats tidy, not about helping the patient.

    My friend’s doing fine now, thankfully. After being so traumatised by repeated NHS cancellations, she ended up using equity release on her house to pay for the op privately. And here’s the really frustrating part, she saw the exact same consultant who would have done the op on the NHS. The only difference was speed. She had her consultation on the Monday and was in for surgery that Friday, same week. No delays, no cancellations, no drama.

    I really hope the gardening gives you a bit of breathing space. Even when everything feels heavy, just clearing a few leaves can feel like reclaiming a bit of calm. Take care xx

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