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Being de registered for cancelling medical appointments

maudmaud Member Posts: 10 Connected
I have fibromyalgia very bad pain and many other symptoms and sometimes am unable to get out of bed. I can just about crawl to the bathroom.
I have no problem in getting to medical appointments as my retired husband drives me but sometimes I am really not well enough to attend.
My area seems to operate a two, or sometimes three, strikes and you are out. If you cancel that many times you have to go back to the GP and ask to be referred again.
I was referred to the pain clinic but told there was no point in my attending if I could not guarantee being there from 10am to 3pm once a week for eight weeks. They said cancelling once would be OK but not any more times.
Last week I had to cancel two appointments because I have pneumonia, one physio, one dentist. I no longer have a dentist and have been discharged by the physio.
i do want to attend these appointments. I wouldn’t make them if I didn’t and always explain my situation at the first one.
Sometimes I receive a sympathetic response when cancelling such as they understand my situation but have to stick to the rules. Other times I am told my cancelling is unreasonable and affects other patients. I always try to give them as much notice as I possibly can.
I feel that I cannot be the only person in this situation, in fact I know of others, and think that this denies medical attention to many very sick people.
I certainly am getting to the point where I don’t think it is worth even trying to attend hospital appointments but then again I don’t think I should just have to give up and that there should be concessions made, not just for me but for others in the same situation.
Does anyone have any ideas who I could approach about this please ?

Replies

  • maudmaud Member Posts: 10 Connected
    edited November 2018
    I have fibromyalgia very bad pain and many other symptoms and sometimes am unable to get out of bed. I can just about crawl to the bathroom.
    I have no problem in getting to medical appointments as my retired husband drives me but sometimes I am really not well enough to attend.
    My area seems to operate a two, or sometimes three, strikes and you are out. If you cancel that many times you have to go back to the GP and ask to be referred again.
    I was referred to the pain clinic but told there was no point in my attending if I could not guarantee being there from 10am to 3pm once a week for eight weeks. They said cancelling once would be OK but not any more times.
    Last week I had to cancel two appointments because I have pneumonia, one physio, one dentist. I no longer have a dentist and have been discharged by the physio.
    i do want to attend these appointments. I wouldn’t make them if I didn’t and always explain my situation at the first one.
    Sometimes I receive a sympathetic response when cancelling such as they understand my situation but have to stick to the rules. Other times I am told my cancelling is unreasonable and affects other patients. I always try to give them as much notice as I possibly can.
    I feel that I cannot be the only person in this situation, in fact I know of others, and think that this denies medical attention to many very sick people.
    I certainly am getting to the point where I don’t think it is worth even trying to attend hospital appointments but then again I don’t think I should just have to give up and that there should be concessions made, not just for me but for others in the same situation.
    Does anyone have any ideas who I could approach about this please ?

  • topshoestopshoes Member Posts: 443 Pioneering
    edited November 2018
    Hi @maud welcome , i would not worry about it as long as you let them know beforehand you can not make it as it will go in your records , if you can let them know week or so they can phone someone up for them to go to your appt as they do that to me sometimes
  • Ami2301Ami2301 Community champion Posts: 7,135 Disability Gamechanger
    Hi @maud

    Sorry to hear this. Unfortunately this does happen in other areas too, like mine. I have not gone beyond missing more than one appointment, therefore I can only imagine your frustration. Is your GP not able to visit you at home? Is there a community physiotherapist available?
    Community Champion
    Disability Gamechanger - 2019
  • maudmaud Member Posts: 10 Connected
    Thanks @Ami2301. It’s really the hospital appointments not GP, who I rarely bother to see. I’ve never asked for a home visit but get the impression I would have to be on my deathbed to get one.
    I’ll look into community physio but really I am trying to find a way of changing the system for others also, not just me.
    I understand the NHS is on its knees but really think these rules affect a group of very sick people.

  • maudmaud Member Posts: 10 Connected
    Thanks @topshoes but the problem is this illness can be totally unpredictable. I never cancel on the day of appointments and in fact always avoid exerting myself and rest beforehand to avoid a flare.
    unfortunately though these can occur at any time and for no reason. I couldn’t possibly say a week in advance how I will be the following week.
  • topshoestopshoes Member Posts: 443 Pioneering
    edited November 2018
    @maud not sure what to suggest really, think it could  down to your dr to refer you back if they will as they would of got a letter / email to from the hospital , then it is down to the hospital , good luck x
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I know exactly what you are talking about as I'm in same boat. Stress of appointments in fact can trigger a fibro flare up. It's insane. I got booted from physio a couple of years ago when I phoned in sick for one appointment. It then took me about 6 months This year to get re referred and appointments in total were 3 then I was discharged. I'm starting to wonder if they are told to boot you out at third session, one of which is assessment. It's disgusting. Also I just self referred for podiatry and they phoned me to make an appointment which I struggle with on the phone. As I'm saying I can't do that date or this date the person is getting a bad attitude and I ended up taking the next appointment. Then I get home and realise I can't do that one either. In my case I need the facts in black and white in front of me and prefer letters or emails to allow time to work it out. The appointment has arrived by letter and there's an email address so I can change it phew! Of course I will worry about getting a strike for that.  This definitely sucks.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • MisscleoMisscleo Member Posts: 646 Pioneering
    Been happening to me since 1980's
    Most doctors havnt the brains to read up on fibromyalgia.

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