Lack of support

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I'm just frustrated at a lack of support from the hospital treating my cancer. They gave me a card with contact details but it's just a phone number, no email address. They don't even answer the phone but you have to leave a message with your details and with the question you want answered. Well a lot of people find the anxiety of leaving phone messages too much and it's enough to stop them doing it. That's partly why I haven't done it. I don't have just one question to ask anyway but I need to talk for a while about various details. They aren't even there after 4pm weekdays and not at weekends at all. I guess patients don't need any support at weekends.

I also don't have one person assigned as my CNS, so I could speak to any one of 4 people. My paperwork actually states that.

They've had 5 weeks to contact me and ask how I am. I've had nothing at all. I'm grateful for Macmillan, and the nurse who answered my questions was absolutely amazing and she really helped. There are things they can't give answers to though without my medical records. 

I've had similar with the diabetes department at the same hospital. They gave me conflicting information then left me to it (I was diagnosed the same day as being told I have cancer).

Also what's with no fans and not even ambient noise in waiting rooms? When you're hot and nervous it's the last thing you need. You're scared to speak as everyone will hear, and you sweat more and more as you wait to be called. Do they not give any thought at all to patient comfort? Those things would be fixable so easily and cheaply. 

Sorry for the rant. Feel free to ignore me. I've just read some things about my future that has really scared me.

  • Hello Geoff ()

    I can understand your frustration with an overworked NHS.

    Your hospital will have a PALS office (Patient Advice and Liaison Service) and you can find their details on the hospital directory or the internet. Just give them a call or make an appointment to see them and they should be able to help.

    You are entitled to rant and if you need help with your diagnosis or your feelings you can always either post on the Kidney Cancer forum - I see you are a member - or give our support line a ring on 0808 808 00 00 (8am to 8pm 7 days).

    If i can do anything for you just let me know.

    I hope the above helps.

    Best wishes - Brian.

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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • Thanks for your reply Brian. I've posted several times in the kidney cancer forum but it's fairly quiet in there so there is very little help. A few nice people have written to support me which I'm grateful for.

    If I was to call the PALS office they'd likely pass me directly onto the Urology department, so I wouldn't be any better off. It's close to my surgery now anyway so not really worth the stress of making that phone call. One week to go now.

    Geoff.

  • Hello Geoff ( 

    Thanks for the reply. I do get people to use PALs quite a bit and they are great at moving things along, however as you say your surgery is in a weeks time. I do hope whatever you are having done is a success. 

    Remember you are not alone here, if you need anything - although I normally work on the Prostate forum (that's my cancer) I am happy to help - you also have our support line too.

    Let me know how you get on.

    Best wishes - Brian.

    Community Champion badge

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • I appreciate that very much Brian, thank you.

    All the best.