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Well that's it then.......

TopkittenTopkitten Member Posts: 1,263 Pioneering
Almost 3 years ago I was put on the waiting list for Cervical Spine surgery. Twice it was cancelled and with GP complications I need the surgery as quick as possible. Two months ago it got really bad and I OD'd unable to cope or get help. Consequently I have been rushed through a process to get to see the senior specialist in 7 weeks instead of the normal 9 months. I saw the specialist today. I also had been asked by another hospital to discuss with him the lumbar fracture I was inflicted with 2 weeks ago.

I was given 5 minutes of his valuable time and the news was all bad. He is going to put me on the standard waiting list. Last time that took 8 months to get a date for surgery. He then explained there was also a 4 month backlog. So that makes it a year to wait. I asked about the fracture but he couldn't find it because he was looking at the wrong x-ray. One from his hospital rather than the one from the other hospital taken two weeks ago. As he couldn't find it he's going to ask my GP to refer me to the Pain Clinic. My last referral took 15 months to get an appointment with them.

Even if I get the surgery having two fused spinal disks will probably mean I can't drive any more so I will become housebound. He said last time that with C4-C5 and C6-C7 both gone then C5-C6 will only last roughly 6 years before that goes too. He refused to even consider a disk replacement.

I have 2-3 years walking ability left and he's just taken half of it away.

He even went on about how tough his life is because he couldn't work for 2 months due to shoulder surgery (most likely a sports injury). He should try losing 12 years of working life like I have.

My pain levels are way out of order and I have struggled to avoid taking an OD because I thought I might get some help. Sleeping was difficult before the fracture, now it's almost impossible. Preparing and eating food is so painful I have 2 or 3 hot meals a week. Even freezer meals are too difficult.  If I ask for help they will say I have to pay for it and I'm not paying through the nose for the crap support Social Services provide. Mostly I live on crisps and cereal. Now that my hope of help is gone I might just as well give up trying altogether and get it over with.

I had hospital transport to get me home after the fiasco. I cried most of the way home and now I have neck pain and a headache from the travel. In addition to my usual stuff.

Why did I ever hope that things could turn out better.

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

Replies

  • CockneyRebelCockneyRebel Member Posts: 5,258 Disability Gamechanger
    Hi TK
    I am so sorry that you didn't get better news, and I won't waste your time with all the usual platitudes.
    You are a valued member here and your input has helped many. There is nothing practical that I can help you with but I am always here to talk if you need to.

    CR
    Be all you can be, make  every day count. Namaste
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Tbh, at the moment, talking just makes me feel worse. I have emailed NHS England to register the fact that the guy is a complete idiot and will continue to see if I can get through the day 1 hour at a time.

    It a;; seems so pointless.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @Topkitten

    You are entitled to a second opinion . You can ask your GP to refer you to a different specialist.
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @Topkitten,

    I'm so sorry to hear that your appointment wasn't what you hoped it would be: please keep us updated on your progress in talking to NHS England. 

    I'm also deeply sorry to hear how difficult you're finding things at the moment. If you're not feeling safe, please seek help from the Samaritans (https://www.samaritans.org/how-we-can-help-you/contact-us) or Mind (https://www.mind.org.uk/information-support/helplines/), where somebody will be able to talk to you and advise you further. 
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Matilda said:
    @Topkitten

    You are entitled to a second opinion . You can ask your GP to refer you to a different specialist.

    There are only 3 specialists in the country able to perform the surgery and that's the fusion. I don't know if anyone can do a disk replacement. The other 2 are too far away for me to visit them and it would have to be done under my own steam for a second opinion. With the MH issues so immediate I don't see how I can wait for even that to go through and I have no energy to even try. Once you start criticizing doctors they all band together to protect each other.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Today I received a letter from the consultant proving he hasn't got a clue. It confirms just the standard waiting list. It states another hospital should do it after clearly stating that the specified hospital doesn't have a surgeon capable. It states I am waiting to be seen by the pain team when I have recently been discharged by them. It pays lip service to my attempted overdose despite that fact was important to his subordinate colleagues. It states that they received nothing from East Surrey hospital even though I was told it was sent before I left, so why was he looking at old x-rays that could not possibly show anything? The guy is totally incompetent.

    I have MH issues because of exactly this kind of support of my physical health and they just get worse every time I get let down. Anyway, I've had enough. I've taken a load of pills and will take more when my stomach settles a bit.

    I have complained again to NHS England as they ignored my first email and told them I OD'ed too. It won't make the slightest difference.

    I was supposed to see a GP this morning but couldn't sleep last night. I must have dozed off because I woke just before the appointment time. I rang them to apologise but instead the receptionist just had a go at me so I was rude and rang off after telling her I would die today. Once The pills have taken hold I will ring the other surgery and apologise properly.

    It's a shame it has come to this but there is no way I can wait for the full waiting list time. Best I get it over with now.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • [Deleted User][Deleted User] Posts: 0 Pioneering
    Hi @Topkitten

    You've worried us - when you said you've taken a load of pills, do you mean your regular dose of painkillers? Or have you taken an overdose? 

    if you feel able to, please call 999 for an ambulance.  Or, direct message me your postcode and house number so we can get you some help.

    -Rosie
    Scope helpline senior officer






  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Yes I took an OD but I neither need nor want help. Fell asleep before I took enough anyway.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • JohnMcLJohnMcL Posts: 4 Scope community team

    Hi Top Kitten,

    Thanks for responding. I would urge you to make use of the information offered above and to contact your GP again.

    I do hope things get better for you.

    John

  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Contacting the GP will now be difficult. I won't speak to that stupid woman again and, because I fell asleep, didn't ring the main surgery. It's going to be difficult now to speak to anyone and, even if I do, nothing will happen. The whole system doesn't really have any interest in helping the chronically ill.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @Topkitten

    Your surgery should have an out of hours service.  Or phone 111.
  • AlexAlex Posts: 1,325 Scope community team
    Hi @Topkitten,

    Glad you're OK. If you really want to avoid the receptionist, you could always try a different surgery.

    Many surgeries have walk-in slots available for emergencies - often first thing in the morning so you don't need to book an appointment in advance. Perhaps they offer that?
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    The problem I have is that confrontation brings out the anxiety and panic attacks. I have had so many problems with GP's that I am always terrified to see them. Going into the surgery and waiting in the waiting room is also extremely difficult. A walk-in option is impossible for me to use due to the waiting time required. Adding to that a hostile receptionist and it just becomes completely impossible to enter the building. So far I have left 3 practises and been kicked out of 2 more. There simply aren't any others left for me to go to without moving.

    In the last 6 years I have had only 6 months of good support from a lady GP who actually read my notes and talked to me to understand the condition. Unfortunately she moved away and the following GP was an arrogant ass who would neither read my notes nor listen. Consequently he misdiagnosed me and made big mistakes. When I complained they circled the wagons to protect him and eventually kicked me out. During that 6 years I had no GP at all for 7 months (over 2 stints) due to the problems caused by deregistering me and the terror of having to go through it all again.

    At this surgery I have a reasonable GP and fortunately he works out of 2 of the practises (it's a multi-practice practice). So I will see him at the other one where the receptionists are both nice and considerate.

    The main problem is that my condition doesn't exist except for me obviously. There is no cure, no treatment and no rules for the GP's to follow. I have scoured the web and every medical site I can find. There are cases of more damage and similar damage but, except for DDD, none of them are progressive. DDD stays in the lumbar only, mine hasn't. It has already gone outside that area so will just continue to grow and become more and more debilitating. Consequently my suffering will also continue to grow. That lack of future and lack of support has left me suicidal for over 5 years now. There really isn't any way that I can accept that I will have gone from a fit and healthy middle aged family man to a lonely, ignored and suffering bed-ridden cripple in less than 2 decades. It's just too fast and yet too slowly taking things away so just when I get a handle on it something else goes.

    I do understand that some are worse off than me and that some would love to have had the early years I had but having had them and then losing them this way is more than I can bear.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • BenefitsTrainingCoBenefitsTrainingCo Member Posts: 2,692 Pioneering
    Topkitten TK - I'm really sorry to hear about the waiting list, and I hope you get to see the reasonable GP soon.

    Scope_rosieScope_rosie, is there anything else you can add here? As it's not a benefits issue unfortunately I can't add anything useful apart from sympathy and support. But be assured TK that you have this. I know what a big difference it can make when people treat you with humanity and respect - so hoping you can get to the venue with the nice receptionists soon. 

    Will
    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I had a call today that someone is going to look into it. Won't hold my breath. I have a GP appointment but not until the 16th. For all the good it will do.

    I have spent the last 2 days watching TV and sleeping a lot. Cancelled most of any plans I had. Can't get myself going. Don't know how to recover from this.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I have started to come out of the funk I dived into. I still don't know if I can cope but I am worried I am going to let hope come into things again. If so I just really cannot cope if it all goes wrong again.

    I had a few calls today. One was to offer me a surgery date in 6 weeks but it was still for a fusion which worries me. The second was to discuss options regarding which type of surgery. The last was to give me a date for a meeting with a local Neurosurgeon to discuss the possibility of a disk replacement. That is happening (hopefully) on 20th October. I do not know if a replacement disk is an option. All I do know is that if the fusion goes ahead now and the specialist was correct in his estimation of yet another surgery 5-6 years afterwards then that is when I will lose the ability to drive maximum.

    Ofc it could happen after this surgery but I daren't risk relying on hope to help me feel better about the situation. Hope leads me to a dark place when it fails.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • BenefitsTrainingCoBenefitsTrainingCo Member Posts: 2,692 Pioneering

    Hi @topkitten

    You could try getting in touch with Healthwatch. They are a national organisation who gather data on health and social services, to give the government a picture of the overall successes and issues, but I believe they can also look into failings where appropriate.

    Certainly may be worth a try.

    http://www.healthwatch.co.uk/

    Mary

    The Benefits Training Co:
    Paul Bradley
    Michael Chambers
    Will Hadwen
    Sarah Hayle
    Maria Solomon
    David Stickland
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Ha ha.... where would I start. I have been let down by multiple GP's. the Council, Social Services, various Hospital departments and even my MP. Not sure I could even remember all of the problems over the last decade which I have just muddled on through with.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • the_velvet_girlthe_velvet_girl Member Posts: 103 Courageous
    I was just wondering if you have ever considered having a Driving adaptations assessment if driving is going to become difficult for you? I'm awaiting an assessment at a driving assessment centre to be assessed for adaptations. It might be worth contacting a driving assessment centre to see if they can offer any advice? I did have to be referred via my GP to get referred for free. 
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    I will do tat once I know if the outcome of the surgery hampers me. At the moment I am ok and I don't want to get recorded on the system sooner than I have to. Once you start that sort of thing it tends to follow you around especially as you get older.

    TK
    "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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