Normal moans and groans and some maybe not so normal — Scope | Disability forum
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Normal moans and groans and some maybe not so normal

Topkitten Member Posts: 1,285 Pioneering
I have debated with myself a few times whether or not to post just moans and groans even when they a really important to me as it just causes disagreement and a general lowering of the general level of happiness of others but.... oh well, here goes........

Doctors, Paramedics and Nurses (real ones not those who answer telephones and bombard you with a checklist of questions) should have 2 things imo. They should be sympathetic and scientific. After 15 years of progressive disability I am getting sick and tired of ALL of them assuming that we are all the same and respond to all medications the same way. I have found out that my body doesn't respond to ANY medication in what would be considered a 'normal' way and I regularly have to argue with doctors and paramedics who tell me that an X dosage of an opiate is toxic and will kill me when I can provide examples of much higher doses not only not being toxic to me but also completely undamaging to my system. All that happens is that they repeat themselves over and over and tell me I cannot know different because I don't have a medical degree and therefore don't understand what I am talking about. Even when I explain that my IQ is higher than theirs (I was measured at 159 at age 25 which means I am a genius supposedly) and have 15 years of experience with such medication they still chatter on about whatever is written down in front of them on whatever sheet they are reading from.

I am sooooooo sick and tired of Doctors and their supporting cast protecting each other at the expense of patients physical and mental health just because they are frightened of making ANY mistakes. Personally I am prevented from having surgery which would both alleviate pain and help with mobility simply because the Senior Orthopaedic consultant put me down for the wrong surgery. Not only was this withdrawn a few weeks later , now they will not even speak to me to discuss ANY options that might help in the future.

I have my local GP to thank for basically now spending the rest of my life confined to 1 room and either a recliner chair or a bed because  they had no idea of how to refer for a Occupational Therapy assessment. In April 2018 I request one and the GP referred me for Therapy (not Assessment) twice and their so-called expert doing exactly the same. So, instead of getting an assessment in a couple of months It took 11 months and even then the report was wrong (different topic).

Along with GP incompetence I have suffered similarly at the hands of Social Care. 3 years ago a Social Worker made a big mistake with my care requirements simply because she was a trainee with no actual training (it would seem). Now, not only was my care (14 hours a week) help taken away despite having a progressive severe disability they have continually time after time refused to assess me again and probably never will. Instead all I ever get is excuses. Due to my condition I had 2 dozen ambulances or police safety checks happen in 18 months. Each time I was referred to SC for assessment never to be heard of again. As Occupation Therapy also comes under SC in my area I have had problems with that too. As I said I waited 11 months for an assessment and when they finally did it (I was referred by the SC group at the hospital, not by the GP as is supposed to happen) the guy who assessed me for a wheelchair usage assessment had no understanding of wheelchair requirements, his command of the English language was minimal at best and his understanding of what I told him negligible. Consequently the report stated I needed wheelchair accommodation due to back pain (which I don't get) but that I have carers coming in and I am coping fine (both are outright lies). It has taken a further 6 months to get the report correct and now I am basically too ill to move despite the fact that in wheelchair accommodation not only would I be able to cope I would likely be able to start going out again.

I am getting so sick of seeing Cancer charities spending so much on advertising instead of spending it on people instead just so they get a bigger slice of the pie and can pay their top people better. Cancer and Heart Disease are not disabilities in themselves (though they can both cause disability in a relatively low number of cases) so why do people with MS, ME, CFS and Fibro (and others ofc) not get the sort of help that Macmillan promise to Cancer sufferers?

We are blessed with a failing health system in this country mostly due to people who are too drunk or too selfish to avoid using the system unnecessarily. TV programs depicting doctors and helicopters attending RTC's never state that the NHS pays for neither and all RTC doctors and helicopters are run as charities. The absolute best help the NHS can provide at an RTC is a Paramedic and often those have to travel in an extra vehicle because only about 50% of ambulances have a trained Paramedic as part of the crew.

There are a series of adverts run by a well known soap and other such products company trying to get more companies to use 'normal' people in advertising rather than models. Whilst I applaud this I do wish they would be more careful with the things they say. For someone to say the TV should mirror real life more because that's what it was invented for is stupid. TV was brought in as an alternative entertainment medium to radio and it is only in recent years that so-called Reality TV has become popular and I defy ANYONE to prove that the people playing up for the cameras are always like that instead of actually being normal average people.

Which brings me to the idea of 'Celebrities'. In my youth there were a few stars plus royalty plus a few household names that were called Celebrities and they were called such because almost everyone had heard of them. Now it seems that so long as you appear on TV for even a little while you automatically become a 'Celebrity'. This pathetic idea has devalued the whole concept of Celebrities to the point that some TV programs have a celebrity on a show that perhaps 1 person in 20 has even heard the name of let alone recognizing them for what they do. Oh, and while I remember, my first wife and family are all Celebrities because she appeared as one of two people featured in a 1 hour show on channel 4, my younger daughter because her picture appeared in the sport pages of the Sun and once in a local paper and because I was featured for 8-10 seconds on the local TV news program. My eldest daughter has only appeared with her picture in a local newspaper. I'm sure you have ALL heard of all of us..............

Why is it that, despite costing far more than any other part of the NHS, alcohol is not restricted more? Try watching one the the reality Police shows and 8 out of 10 things they deal with are caused by alcohol. The same applies to ambulance and A&E usage. I can remember being in terrible pain one night and ending up waiting in the corridor for hours for an A&E bed and, when a male nurse looked at my chart inside A&E, stated "Wow, someone who is actually ill and not here because of drink!". The main part of A&E has 20 beds, majors another 20 and EAU, MDU and another ward 30 more in total...... and only 1 person was actually ill???????? In attempting to cover this up and justify stopping smoking they bodged the numbers and included ALL breathing issues whether caused by smoking or not so that smoking and alcohol were equally dangerous and to justify clamping down on a lesser issue.

The current estimate of severely overweight adults in this country is around 50% and the estimated number of alcoholics is around 75% of adults. Alcohol accounts in a large percentage of cases as the cause of being overweight and yet all people do is complain about being "fat" and claim they can stop drinking whenever they want but why should they? With the average weight per person currently in this country constantly rising why do people just complain instead of doing something about it?

There are at least 2 companies advertising a cure for heartburn. Heartburn's most common cause is overeating or overdrinking or both and these companies do not advise improving diet as a cure, instead they suggest taking pills every day to cope better. This ofc completely ignores the fact that continuous medication increases dramatically the chance of stomach ulcers, heart disease, breathing issues and even Cancer. Surely those adverts should be banned as being dangerous?

2 weeks ago I went to hospital with chest pains. It seems I had strained my chest muscles due to coughing so much as I had a chest infection. Later in the day, on a hospital ward, I was running out of my normal pain medication and asked what I should do. All I got was "wait for the doctor to see you". I tried to explain that the pain levels were totally intolerable and, having already waited 5 hours to see the doctor, that I had one dose left with more at home. "Wait and see the doctor" I was told. I took my last dose, discharged myself (still having the chest infection) and went home where the pain levels dropped dramatically because I was no longer being shuffled around the hospital from bed to bed. They did ask me why I didn't want to wait to get well and I said "I am in so much pain all I want to do is die". Since I got home no one from the NHS (hospital or GP), no one from Social Care or anyone from any other department has even called me to see if I am still alive, let alone well. I am alive, I still have the chest infection, I have had 2 days of severe chest pain so bad I cannot eat of drink until it eases and yet apart from one telephone call from my son no one seems interested. What a WONDERFUL health service we have in this country, lol!!!!!!!!!

Ok, I think that'll do for now, don't want to depress everyone else down to my level if I can help it.

"I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.


  • exdvr
    exdvr Member Posts: 331 Pioneering

    @Topkitten....Sad to say it but you really hit the button 100%.  The average GP doesn't really seem to specialise in anything in particular and will only prescribe something to get you out of their office quickly.  If by sheer luck you get to see a specialist you'll find someone half your age with little or no knowledge of your particular condition, in my case polio and its after effects.  It really is in my case leaving me just wanting to shrivel up and expire just to bring it to its natural conclusion. 

    I see another post doing the rounds is asking for your favourite film....GROUNDHOG DAY ???? 

    Congratulations on an excellent post.

    Best wishes.


  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Ty @exdvr, my particular case is complicated by having a progressive condition no one, not even the Pain Clinics or Specialists, have ever heard of.

    Ty for the support.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    I really should give up trying to get into a better position. Having had so many problems with my GP I have contacted one nearby who have less than 22,000 patients trying to book appointments using 6 incoming lines. However, without taking too much medication I am completely housebound all because of my current GP.

    They have said I MUST pick the forms up and I also MUST take them back in with ID information and I MUST then attend the surgery for an initial appointment before I can be treated by them. I once again tried to explain but they weren't listening. It's also not only the GP that would have to change but the medication delivery would have to be altered and yet still be continuous.

    So much for that idea, I guess I still only get to only use 111 doctors who know nothing about me and who, more often than not, simply dump me onto the Ambulance Service.

    Why oh why didn't I emigrate from this stupid and idiotic country whilst I was still healthy?

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.


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