MPGN sufferer attending a well known hospital in London, UK

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michelle999
Posts: 11
Joined: Sun May 30, 2004 11:36 pm

MPGN sufferer attending a well known hospital in London, UK

Post by michelle999 »

:evil: I just wanted to let off a bit of steam... I am a 36 year old female, living near London in the UK, I attend a well known hospital in London, whose name begins with 'G', for my renal appointments. I am fortunate to be in remission once more, after being diagnosed with MPGN, type unknown, in August 2000.

Anyway, I have become quite desperate to return to work after having had 3 months off with a bad back, and sciatica. Over the last 2 days I left 2 messages, with the renal unit, to ask the Dr that I see to contact me back, hoping that she might be able help me in some way. My own GP has told me not to take any anti-inflammatory tablets, which has prolonged the whole episode.

I'm upset as the Dr never phoned me back, and it was left for me to ring her back for a 3rd time on the 3rd day after I originally called..she said that she had only received 1 message, and was not given a phone number to ring me back on..

Has anyone else had any problems with this particular hospital? I'm not sure I should actually say the full name on here, but anyone living in or around London, UK, would probably know which hospital I mean. They have previously refused to send me a copy of my blood test results, which I thought they couldn't do, because of the data protection act? I really wished I'd stay with Kings college Hospital..

What do others on here think?

Michelle
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Hal
Posts: 617
Joined: Wed Apr 21, 2004 9:56 am
Location: Liverpool, UK

Post by Hal »

Hi Michelle,

Firstly, congratulations on your remission - I hope it stays forever for you.

Yes, its a pretty poor show doctors not calling you back. However, I don't think by any stretch of imagination your hospital is especially bad - its happened plenty of times to me and of course makes getting treatment much more stressful, having to manage your own treatment more than you have to. Its no excuse, but nurses are busy, doctors are busy, someone is lazy, someone forgets .... so stuff doesn't get passed on.

I'd recommend making use of fax (as JMan often recommends). I have used this to good effect to get questions answered. Yes it is more for something not so urgent, but its another way of trying to get a message through. So I'd try getting access to a fax machine and faxing doctors as well as calling. If you have a computer with a modem which you can attach to your phoneline (which you will do already if you use dial-up internet), you can send a fax via your computer. If you have a request in writing, the hospital will usually have a policy on how long they take to respond to it, which can be useful also if you have cause to complain (since items in writing are more concrete than a phone message someone didn't pass on).

The same goes for the blood results. Most hospitals will be reasonable and just copy them for you. However, i guess they can force you to formally request the information from them (yes they are being riddiculous). There should be a form to fill out for this. Ideally, obviously you don't want to go down this route, so personally I would ask again for a copy each time you need them - if they say no ask them why? If you still don't get anywhere I'd put a complaint in to the hospitals Patient Advice Liason Service (PALS), they should have a phone number. If you don't get anywhere with that , make a complaint to your consultant and copy to the head of the nephrology department and the chief executive of the hospital - anyone in a position of power.

I know its a pain in the backside this stuff and it seems extremely pathetic on the part of the hospital concerned, but I hope you get some information with less hassle in future.

Best Wishes,

Hal.
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michelle999
Posts: 11
Joined: Sun May 30, 2004 11:36 pm

Post by michelle999 »

Thanks for the info Hal. I shall bear in mind what you have said. I rather wished I had not changed hospitals now... all this hassle. It's bad enough being in remission, having to take time off work and to struggle around with a back and leg ache, without smart arse dr's giving you the run around.

Michelle.
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George
Posts: 133
Joined: Fri Apr 23, 2004 3:13 pm
Location: Wakefield West Yorkshire UK

Post by George »

Hi Michelle, not all hospitals are the same. I attend Leeds GI for dialysis and before that was under a consultant called Dr Turney. He and his staff have always been helpful, I always got a copy of letters sent to my GP and still get full copies of all my blood tests from my HD unit whenever I ask.
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michelle999
Posts: 11
Joined: Sun May 30, 2004 11:36 pm

Post by michelle999 »

Thanks for the reply, you are so lucky George! I'm going to see the renal consultant tomorrow, so I will be having a discussion with her about everything.

Best wishes,

Michelle
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