It's all far too much..... — Scope | Disability forum
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It's all far too much.....

Topkitten Member Posts: 1,285 Pioneering
For me to cope with. The last few weeks have just confirmed to me that I cannot expect proper treatment by anyone. I just keep getting screwed over and left alone, suffering and hopeless.

I have been suffering pain a long time (almost 13 years now) and support from GP's is transient and insufficient. Every third day I am going through withdrawal and this was exactly where I was 6 months ago. Constant arguments with GP's hasn't helped, nor those with surgery staff. Complaints to NHS England haven't helped as, once their interest wanes, the surgery goes back into non-helpful mode. Now I can't even trust the Pharmacy as my medication has gone missing. Even the too small amount I should get hasn't been delivered. I use 3 patches now, difficult for me to stick on due to my skin not being receptive to them, and a ratio of 2 50's to 1 25 (all in microgrammes per hour). They were supposed to deliver a further 6 & 3 for the 2 weeks remaining or 18 & 9 for the missing plus a new script but instead I got 10 & 10. This stuff is the strongest pain killer used in prescription form and can be extracted for other uses, for example to be cut with heroin to increase profits. Consequently there is a black market for the stuff and, I guess, that's where my missing meds have gone. I now don't have enough to last until I can next request more let alone cover the gap / delay in it being delivered.

For a couple of weeks all I can think of is driving to a lay-by on a nearby dual-carriageway and walking across the lanes until I get hit. I cannot shake the thought. I have tried medication overdoses and they simply don't work, my body is too strong and has too much resistance to anything I have to guarantee. I almost did it a couple of years ago and ended in a coma but that medication I no longer have or, at least, not enough of it plus what I do have will have deteriorated and be too weak to have much effect.

It isn't just the pain though, it's the total lack of understanding and thoughtlessness of the people I try to deal with. I spend so much time just trying to cope day to day and to get what medication I can that my other problems just accumulate and never get resolved. I have unpaid debts that I could clear if I could find the time and energy but I have none of either after the latest (at any given time) medication problem. I can no longer leave the house and need to use a wheelchair indoors but cannot because this place isn't suitable and my assessment to move is in limbo. I cannot shower so I am getting filthy now having not showered or washed for a month. I manage 2 or 3 hot meals a week and just survive around those on cakes, biscuits and sweets. I'm having to switch from DLA to PIP and am waiting the initial response to my application which is just adding pressure. I used to see escorts to feel human again but now cannot go out and see the couple I have met before and anyway, I'm not clean enough to meet one anyway. Plus I cannot get money from my bank because I can't go out. It's a vicious circle.

I have had many conversations to 2 GP's about increasing my meds but the guidelines say no more and I cannot get them to budge, not even to try it and at least let me see if I can cope with the side-effects. After all, guidelines are just that a guide which will vary from person to person.

I don't know if I can carry out my plan because the pain will be horrendous but so long as I take an OD of the opiates I do have I think I will be able to at least try. I stupidly worry about the effect it will have on the unfortunate driver that hits me but I see no other choice. I used to think of jumping off a bridge either onto the dual carriageway or into the river but doubt I can scale the wall or barrier to do so now.

Whether I can walk well enough to get in front of something could be an issue though. My walking is minimal and I can't even place one heel down without doubling up in pain. If I twist my body in any way I am getting an extreme version of sciatica, trapping not a nerve but a whole bundle. When it traps, if I straighten my leg, I get a lump half an inch across behind my knee where the bundle is attached to and the pain is at a level I have never experienced before. I am used to pain but keep in mind when you think of pain that the Fentanyl I take every day in those patches is equivalent to between 3,000 and 6,000 Tramadol tablets every day. That's a minimum of 1.5 Kg of Morphine Sulphate, calculated from 3 grammes of Fentanyl (my daily usage). That is an awfully large amount of pain killers and yet it does not allow me to walk even around the house without excessive suffering. Even going to the toilet is hellishly painful and that isn't right, no one should be treated this way.

Not surprising really I guess that I figure my time here is over. I don't believe in an afterlife or other existences, I know once I'm gone that's it. The experience of the coma simply confirmed my beliefs. Those people who say their experiences of a coma prove other options are simply mistaken and do not understand what they experienced and the TV idea of a long dream-filled sleep in a coma is simply laughable and unrealistic. In a coma there is nothing, the only experience are overly long dreams or nightmares when coming out of them. That is what people mistakenly take for coma experience. It's just that they haven't experienced the similar dreams and nightmares again overly long which comes from extended opiate usage.

I'm sorry, I seem to be rambling, I just don't want someone to know why I about to do this and I cannot cope with writing this all down in a letter to leave behind, my hands and body simply cannot cope with writing much now.

I still have doubts though, this is not a way I wish to go out by as the effect on someone else could be awful, I just cannot see any other way I can do 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.


  • GalDriver
    GalDriver Member Posts: 50 Courageous
    PLEASE, PLEASE, PLEASE, don't give up on everybody. I know it seems that they've given up on you but please contact Samaritans:
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Ty for replying @GalDriver.

    I know it seems impossible for me to feel the way I do and yet still bother to post and reply here but if there is one thing I can still do is help others, if not always in a good way. I have always had OCD and was a Computer Programmer for many years so I tend to be extremely logical. I just cannot see a way forward that is beneficial to anyone. And yet.... somehow I still manage to fend off taking final action time after time on almost a weekly basis. I have OD'ed a number of times without effect and without telling anyone and have a couple of times put myself into a position that, with a small step, would have been able to end it, again without telling anyone. I do not know how I avoided it but I do know that one day I won't.

    I know it may sound arrogant but it isn't meant to.... I know all the reasons to stay around and all the reasons not too. I know ALL of the organisations locally and nationally I could contact and have contacted them all but talking doesn't help. It doesn't help because I know exactly what I need and I also know I will never get it. The system just doesn't know what to do about me because they have no experience and a high IQ just lets me fully understand my situation and others reactions to it. On one occasion I was visited by an ambulance crew and I refused to go to A&E so they decided to try to help me in other ways. They had a list of 19 contact numbers and email addresses and one by one we went through them and I told them the response I had from each. When we reached the final one and I told them what had happened when I used it they were completely nonplussed because they had always found some way to help in the past and they really couldn't believe I had contacted them all and gotten no help.... but I had.

    I sleep as much as possible because in the first 10-15 minutes after waking the pain is minimal and I haven't really connected with myself enough to remember how bad things really are and I can sit and watch TV like any normal person. Then ofc I start moving to get comfortable and the pain rises and the memories return and so does the hopelessness.

    I know the Samaritans can help people because, by talking, people can understand how to maybe make things better but, other than that, they cannot help.... they are not even allowed to record details of the call. Talking doesn't help me because there isn't anything I haven't thought of, anyone I haven't tried to get help from, anything I can do to help myself. I am an expert in "how to cope with constant pain" and "how to adapt to minimise pain" and nothing new ever appears. I am now on the maximum amount of prescription pain-killers a doctor will ever give me and yet the pain will continue to increase more and more rapidly taking more and more from me.

    Why allow myself to become more miserable and useless for another 20-30 years?

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Waylay
    Waylay Member Posts: 971 Pioneering
    We haven't given up on you! You're valuable just because you're you. Please stay with us. Please call someone, or see your GP. This life we live can be so hard, but you're important, and there is help for you. Have you been on a pain management course? Been to a pain clinic? Whatever you have or haven't tried, we're here for you.
  • GalDriver
    GalDriver Member Posts: 50 Courageous
    edited July 2018
    I get it, Topkitten. I too am in constant pain with a not too shabby IQ (ex-MENSA member). What keeps me here is not wanting to hurt my loved ones. To each our own, eh? I think pain clinics are **** too. I make cannabis fudge, it helps more than anything from the pharmacy but is prohibitively expensive :-(
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    @Waylay ty, it never ceases to amaze me that some people appreciate me and what I have to say as I have never thought of myself as anything but an average ordinary person. Yet I still find that people who get to know me do worry about me despite the poor condition I am in both mentally and physically. I guess I will never understand.

    @GalDriver, I would never put down the Pain Clinic as, for many, they provide a good and reasonable service. In fact I still use some of the techniques they taught me. The trouble is that the health service in general is just not good at dealing with something new. They know what procedures to follow for most things and even though there are cases which are unusual in either strength or severity, they still can provide support. When something new pops up though they become conservative and fearsome, almost frightened to make a mistake. This is unfortunately where I come in and it gives me a sense of hopelessness that they will not even try to work with me.

    I will admit to being a difficult patient. I have been awful at times because I had to be to bully them into taking actions which were necessary. Only today I spoke again to my GP and stated things very reasonably in the hope of getting further support. However, all I have been able to achieve is to get him to think about it. As I said I am at the maximum limit of medication anyone is supposed to get and now I have to be crafty and obsequious to try to get further support. Things would be easier all round if I had a good friend locally or family that would help, but I don't. I have no care and little, if any, support and the MH issues preclude my using taxis so, unless I can get more pain meds, I am trapped and feeling useless. I don't suppose I have helped myself by refusing to let the few women get close to me that have tried but unless and until I meet someone ho can really understand what I am going through I will not permit it. It may sound harsh but unless they really do understand they would put themselves through hell for nothing because I have little to offer anyone except good advice and a sharp tongue.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • GalDriver
    GalDriver Member Posts: 50 Courageous
    I should have said that pain clinics have proved to be **** for me, not generalise. Yes, we're all different. You have your own views of things, of course, but I wouldn't expect to find anyone who fully understands what you're going through and even if you did you may not fully understand what they're going through so would still be a mismatch. My partner is supportive but doesn't understand the half of it and neither do I about all he deals with in his life. We all just do our best.
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    I suffer from chronic pain myself as well as other health issues and I can fully understand where you are coming from. I’m on pain meds and I’ve been left in a position several times where I run out or run risk of running out of them and spend regular amounts of time stressed out chasing up my gp, the receptionists, my chemists who order and collect my meds and general worrying about running out of them. Each one blames the other for late or missing meds. I have asked my chemist about getting them made up weekly putting them in full charge of all my meds as I have brain fog as well and I’ve got to go in and see them. They are a very busy smaller chemists and may not take me on. Anyway reading your post I’m wondering do you have any mental health issues like depression and are you seeking help for this. If you are having suicidal thoughts then you must ask for help. Just thinking about it is bad enough to need help. I’ve been there myself too. There could be all sorts of help you could get with your issues you described and if you don’t ask you don’t get. In my case if I don’t dig my heels in and demand help I wouldn’t have been getting any. So I know it’s not that straightforward. Pain and poor mental health go hand in hand and there is no shame in it. Please ask for help. Good luck 
  • feir
    feir Member Posts: 395 Pioneering
    I feel the same way so would feel hypocritical in discouraging you and only been like this for a year but will say even i'm relieved to see a change from your first post to the last one, don't know how you've managed 13 years of what you're going through, i'd like to add you have been helpful to me on these forums and thank you for that.

    I'd say get yourself accustomed to online banking and paying for things that way, this has been most beneficial in me being able to still do things for myself (everything i do is online now as i can still use my hands and even if they hurt online stuff is quick and easy to do).
    Also change your chemist as well, find one that is good at sorting out prescriptions (mine calls me if my GP stops any and they give me more than enough notice to be able to sort it out) and if anything goes missing they tell me how to try and sort it and say they will sort it if i can't.

    As for everything else social care has been the first thing to go under this government, when i think about having to wait years to have a caring government come in who listens to what it's people wants i get **** off, especially as the tories might be voted in again and things will get worse. Not being able to care for yourself is so degrading, mentally it's hard to have to adapt to these changes but being left to fend for yourself is even worse, neglect is classed as abuse because it's harmful to the person being neglected yet it's happening all the time. All the other stuff you need is in short supply despite it being needed, unfortunately we live in an age where only things that make profit are deemed as necessary. Although i accept this is reality i don't accept it as fair and see it as a sign that disabled people are seen as 2nd class citizens now.

    If you did get some help from mental health they could put you on meds, some tablets for mental health work in the same way as painkillers. I've not done any research on which ones are best and which meds stop painkillers from working (it looks really complicated to work out tbh as i am mentally right now) but it could be  a way of getting more pain relief if you tried to get help for mental health. I think it's important to find someone who will take your suicide claims seriously though also. I've decided i'm going to do as much as i personally can to get people to understand why i feel this way because i know with the right support i would not want to end my life and so would many others. There is also such a thing as advocacy/advocates as well, some charities have advocates who will act on your behalf, as a female i'm lucky their are specific female orientated groups who do this, not sure if they help men or who men can go to sorry. But maybe someone else knows?
  • Misscleo
    Misscleo Member Posts: 647 Pioneering
    For 17 months iv been asking to speak to the practise manager at our doctors. He is still not excepting appointments with anybody. Noone has even seen him.
    For 17 months our perscription have been a joke. High blood presure tablets. Statins. Mophine etc have all been missing. Our scripts are sent to the wrong chemist. They are even sent to morrisons.
    I put my script in doctors box last thusday 10am and 7 days later the scrip is still in the box.
    Noone has any intension of dealing with them.
    We have 3 chemist and we have no idea every month where the doctors staff are going to send our scripts.
    The chemist are pulling their hair out trying to work with the doctors staff. They say because of the behavour of the practise manager refusing to even talk to them or us nothings getting done.
    I seen people trying  to reason with doctors staff being chucked out of doctors.
    They have no where else to go. 

    One problem is the doctors only deal with our scripts once a week on a wednesday. So if like mine, you put your script in the box thurday morning it will still be there till the following wed morning..

    Because of this i have been without tablets for 3 days and wont know if i will get any today.
  • Gwendoline1
    Gwendoline1 Member Posts: 215 Pioneering
    Hiya Topkitten, I'm relatively new here and have had great comfort from reading about people's lives and experiences that are similar to mine, I then know I'm not alone in my pain. What I most certainly would like to say to you is that this world is a far better place with init than out of it. You have helped so many people,thank you.
  • ClaireSaul
    ClaireSaul Member Posts: 92 Pioneering
    @Misscleo - I wondered if you have reported these practice failures (Including failure to see the p manager) to the partners/owners?  I do appreciate that these are very likely some of the GPS - but it may be worth a letter detailing all the issues of the past 18 months to your MP, with a copy to the the practice partners??
    The fact that the chemists are also pulling their hair out indicates that the current service is unacceptable.
    Claire Saul
    Chronic Pain Advisor
    [email protected]
  • Misscleo
    Misscleo Member Posts: 647 Pioneering
    Iv tried but the recepionst all 5 of them say they can chuck anuone off. And i am very ill so id then be very ill and not have a doctors.

    The chemist all 4 of them have tried to talk to the p. Msnager and got no where in my case or anyone else.we cant even get a name. Its the recepionsts who keep messing with our prescriptions. I told 1 doctor she said keep that to yourself 

    If they cant get this mess sorted what chance do people who are very ill stand? I cant be without a doctor. As it is i was without any meds for 8 days that includes some very serious meds
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Ty for the support @Misscleo. I do find it strange that people find my honesty and ramblings helpful but who am I to judge, lol!

    As for being "chucked off" by a surgery I'd like to clarify as it has happened to me twice. Apologies if I am repeating myself. A GP surgery can "deregister" any patient and need almost no reason for doing so. They can simply say that there is a breakdown in communication. Mostly though it is done to patients who complain too often or make a nuisance of themselves. They simply send you a letter stating that you will only get support from that surgery for 7 days from the date of the letter (not from when it arrives). The letter will detail (by law) what and who you should do or contact to resolve the issue and find a new GP and surgery.

    However, everyone has a legal right to the support of a GP. This process is handled by a group called ACE (sry, can't remember the long name). You can then contact ACE (number and name in the letter) and they can assist you in finding a new surgery. However, if there is no reasonable alternative they will force a surgery to register you. You still need to go through the process of registering though and this usually means a trip to the surgery. The process of registering should cause your notes and records to be transferred to the new surgery however, this in itself can take up to 6 months and almost always at least 2 months. For repeat prescriptions they will re-prescribe those if you can prove you usually have them so ALWAYS hang onto the most recent repeat forms.

    Thanks to governmental interference it is no longer possible for a chemist to handle the repeats for you so having a managed service (like BOOTS used to provide) is no longer legal. In trying to clamp down on prescription costs and abuse the government have, as usual, punished those that most need such help. Most modern surgeries will provide an on-line reorder process for you to use. Your choice of chemist is entirely up to you and most will pick up prescriptions from all the local surgeries and this is done by registering with the Chemist. The surgery MUST accept your choice of chemist and are legally liable if they frequently make mistakes in sending prescriptions to the wrong chemists. No surgery van force a person to use any particular chemist no matter how convenient it might be for them. Personally I have always had very good relationships with BOOTS and would always recommend them.

    @Misscleo the problems you have with your surgery / chemist are actually illegal and have obviously come about due to a completely incompetent Practice Manager. The official complaints procedure is as follows......

    If you have a problem with a GP or with a surgery you are firstly supposed to contact your Practice Manager in a polite and helpful manner. If that doesn't resolve the problem then you are supposed to raise an official complaint with the PM again. This necessitates the surgery to reply to you immediately and to inform you of your complaint having been raised and to clearly explain who does what and when it will happen. This is your LEGAL right and the process MUST be handled in a very specific way, regardless of what a PM might say. I suspect that if they do not follow the correct process they are open to being sued which is why they might threaten people with deregistration and even do so to try to avoid having to go to court. If the problem still does not get resolved then you need to email a complaint (or write and post it) to NHS England. They will initially try to resolve it without raising a complaint which will work for most people but if it is still not resolved then raise an official complaint with NHS England and again you will receive a letter (or maybe an email) which will again clearly state what and who does what next. There does not seem to be a specific follow up if this doesn't resolve it but there may be an Ombudsman and if not then contacting your MP is the final port of call.

    @Misscleo I would suggest that you contact NHS England not only stating the problems but also that you were threatened with deregisteration. If you can I would suggest you pass this procedure onto anyone else who is also having problems. If if was me I would print the procedure out with a note suggesting anyone at such a such surgery also complain to NHS E and leave a number of them at each chemist for them to hand out to other patients if they will agree to do so. Maybe state that this is what you intend to do and this is what you were told to try and that it is a personal request, thus absolving the chemist for problems and maybe making it more likely they will pass it on.

    In my experience I have found it pointless complaining to a surgery. If a polite and helpful letter to the PM doesn't resolve an issue I go straight to NHS England but they are getting overloaded by complaints presumably because there are many incompetent PM's in the system. Ofc it is difficult to terminate employment in this day and age so finding you have an incompetent PM to deal with is most likely because the surgeries find it difficult to get rid of them and even harder to find good ones.

    Personally I have found that contacting your MP for help is not always useful and I no longer bother with it. I did try to resolve an issue with Social Care this way and, having stated I could not go to see him in an email the first reply was to ask me to go see him. When I replied to that with "Please read what I have written properly before sending me a standard response" I found my complaint was immediately forwarded to Social Care for their internal complaints procedure (which whitewashed the Care Worker) without letting me know until I got a reply from Social Care stating what had happened, what they did and the whitewash result. I haven't bothered to contact my MP since but have heard that a very few MP's really do do their best to help. Oh, and btw, the result of my complaint to Social Care was to be reassessed without being told I was and having a completely invalid result stating I didn't really need care. They also lied and stated that I had completely agreed to it (since when has "Whatever" implied complete agreement?) and they lied further stating that I was physically, emotionally and sexually abusive and therefore not entitled to having a Care Worker at any time in the future. I have told this to people that know me well and they all laughed loudly before becoming embarrassed once they realised the consequence of this action. It explains ofc why I cannot get carers, why I cannot even get an assessment for them despite multiple ambulance crew reports and police safety reports all stating that I desperately need help. I have had a Social Worker from the hospital team ring me, discuss it and forward an immediate request to the Social Care group run by the council stating that I was at high risk of attempting suicide if I did not get help. I didn't even get contacted by Social Care, let alone assessed.

    Sorry if I have rambled on a lot but there was no simple answer and I never use 10 words when 100 will do, lol!

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • Misscleo
    Misscleo Member Posts: 647 Pioneering
    Well lets think  the p.manager is refusing to speak to anyone. Surely he is not going to read a note/letter from us either.
    And how would we kniw if hes read it when he wont speak to us.
    And how would we get the note passed the recepionsts. 
    Wed find ourselves without any doctor and as someone who very ill that is not an opsion for me


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