Awake and up all night

Thanks for that post Ray. Great response to a touchy subject. It was good to hear you had excellent care. My son had not many problems with his care he seemed to get all the medications and appointments no problems. My care has been severely lacking. They have told me I need radiotherapy but have heard nothing for 2 weeks.

At first it LooKeD like this forum was actually asleep .  . .  the first visible pages showing no activity for 12 months !

Oh Rose THAT is just so frustrating.

If you are unhappy with a hospital's response to a SAR [Subject Access Request] or they have failed to respond within one month, you can report them to the ICO [Information COmmissioners Office]

I recently submitted a SAR, got an initial 'holding' response, saying the hospital SARS team where understaffed, thefore delayed. Then got an email with a link to download a ZIP file that wil not download.

Yet a local friend being treated at the very same hopsital, 9 month ahead of me, was instantly given direct links to his scans and pathology reports!

Aw Ray, you poor lad, what a truly dreadful experience you suffered back then. Whether it was divine intervention or surgical skills that brought you back from the brink who knows, but thank god it did as otherwise we wouldn't have a very dear friend here today. Applause for that caring nurse, and I've got damp eyes too after reading your devastating story.

This time last year OH landed up in hospital for several days, but only because I dug my heels in. One morning I was downstairs, getting breakfast ready, but wondered what was taking OH so long to come down even though I'd heard him get up. I went to investigate and found him collapsed on the bathroom floor, just by the loo against the wall. He couldn't get up, and I couldn't lift him either, and when I realised his whole body was affected I immediately feared sepsis and rang 999.

I'll get to the point. We spent over ten hours in an A&E cubicle while they ran numerous tests, catheterised him, bladder scans etc. and he still couldn't move a muscle. Then they announced they were sending him home. I was having none of it and told them I wanted him admitted as we'd only be back later on via another ambulance, and I then spent a further couple of hours arguing with various admins until they found him a bed on the respiratory ward. He wasn't well enough to be discharged for five days and had to have therapy to get him walking again. It shouldn't have to be like that, knowing there's a serious issue but having to argue the toss, no matter how overstretched things are. I wouldn't have had the first clue how to deal with a catheter and that alone could have caused a serious infection if I'd have messed something up.

I suppose we've all got a horror story in our lockers, but many could have possibly been prevented with the correct intervention. Anyway Ray, mega relieved you're still here to hear our sorry saga. Big hugs sweetheart xxx

Good morning Joolz, and a warm welcome to our group.

No, we've not done a Rip Van Winkle, it was around this time last year that the group was started so you probably saw the very first post.

Aw I'm sorry you're having problems very similar to the one Rose is experiencing, and hope you manage to get a swift resolution. The whole system needs sorting out until the disparity stops and that includes the postcode lottery. Not the one where they come knocking on doors to dish out large cheques!

Anyway, how are you doing today my friend? xxx

Hello Gill (Gill H ) 

Gill H said:

This is off topic, but when I came back online I noticed  the armchair has been changed to a computer screen by our usernames?

Good spot - When the Community was started each cancer group was given it's own avatar, a chair, a clock a mug, a telephone etc. Some of these were really inappropriate and as part of the continued improvements to the site they have all been changed.

You can of course put your own photograph on your avatar ( Ukiboy will now be adding Pippin to his). Mine is the beach at Ouldeniz in Turkey which is my "Happy Place"! Here's a link for you:

How to upload a profile picture.

If you can think of any improvements/changes you think would benefit the Community, please do let me know and I will add them to my list. The site is being improved and you will notice other small changes in the next few weeks.

Kind regards - Brian.

Thanks for this Brian.I didn’t know how to add a profile photo but it appears to have worked.Love Jane x

Morning all

I think we've all got an incompetence story about the NHS; my biggest problem, just after my surgery, was being let down by the District Nurse service which I know from working at a doctor's surgery is normally excellent but my daughter-in-law (who's a GP) got me to the Urgent Treatment Centre instead.  

Many years ago my daughter, Sarah who was 13 months old at the time, was very ill. Our GP told us to take her to Alder Hey hospital to be checked out where a doctor told me I was a neurotic first time parent. Short version - I couldn't wake her the next morning, Alan rang Alder Hey & told them about our previous visit so they told us to go back, it turned out she had double pneumonia and later an undetected heart defect was found; she ended up having open heart surgery when she was 2.

Anyway, I hope you all got some sleep.

H 

Morning Helen  

Good grief lovey. I imagine that was the worst time in your lives, as there's nothing more a parent fears than a serious illness of their children. Thank goodness everything turned out well for Sarah, but no thanks to that doctor at the hospital - it beggars belief how some sleep at night.

Love to you and your family xxx

Gill H said:

no thanks to that doctor at the hospital

I did tell Alan that if I saw her again I'd slap her!

H