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All time low but even being that is totally pointless.....

Topkitten Community member Posts: 1,285 Pioneering
edited November 2018 in Mental health and wellbeing
Let me point out this is likely to end up a rant, entirely non-PC and potentially upsetting to others. Read only for those with a strong constitution.

The last year has been a nightmare, continuously pushing me in a downward spiral and all caused by a pathetic and non-supportive health service, every member of whom that I have spoken to insists that I get help and yet no one want to provide said support. A health service that insists that I try to keep going in the most completely untenable and miserable situation that people are beginning to assume I must be making up because every one gets help. What a load of ********!!!!!

It started with a GP who refused to warn me of no longer maintaining increases in medication and who also refused to discuss my situation in any way. Consequently I have become housebound for no  other reason than that my GP is too stupid to understand how to support me or provide me with any options. The last 6 months has seen me staggering from one overdose to another, each time with people insisting I talk to MH to get health and report to everyone the problems so that someone can take responsibility for providing some sort of support. No one has either given me that support of allowed me to talk to anyone meaningful.

One issue at a time.....

Social Care... I have been referred to them with greater and greater frequency and importance more than a dozen times in 6 months which finally resulted in being sent a male SW who, instead of looking to provide help nit-picked and confrontational at every possible turn in order to refuse help. I find ANY male presence stressful and upsetting, which they are fully aware of, but this was a deliberate ploy to avoid helping and sure enough I became so anxious I had to ask him to leave. Not that any support they suggested would have been useful as I would have been forced to pay (due to savings) for a service that is totally lacking in management (SW's are not trained in managing care contracts) and given minimal respect by the Care Companies who know they can get away with it. Also, their lack of support stems from my complaints that got my last Care Worker into trouble and which they lied about to get her out of trouble, all due to a pathetic and useless lack of training and a lack of understanding of reality. Even if I was to arrange Care myself there are some problems I cannot figure out how to deal with and certainly SC wouldn't have the faintest idea.

The hospital.... who, since moving the pain control functions into the community, have refused to let me see anyone within the hospital regarding pain control, on any of my numerous visits there.

The Pain Clinic.... As I am housebound thanks to the GP, I am unable to be supported by the Community Pain Clinic and was instantly discharged when referred.

GP surgery.... So many stupid mistakes that this is going to take some explaining. My surgery is one of a group of 4 or 5 and there isn't a single GP that resides in any of them for more than a day or two at a time before moving to the next. This has meant that on the few occasions a GP has contacted me it's a different doctor almost every time and I spend most of the time explaining a condition they have no experience of and  for which there are no known records apart from the inches thick folder of mine which they never read. None will prescribe anything remotely useful now and I have been forced to argue 3 or 4 times with the most senior doctor (a real clown in the making) just to get any support at all. GP's refuse to visit me, even though it was they that made me housebound, and insist in trying to understand a complex issue by phone. Any reports generated by the rest of the system are simply put into my file by Reception and never read of acted on by any doctor. Whenever I try to ring the surgery I get a busy signal 90% of the time or get routed to someone in reception or management who has no idea of what to do and no interest in doing anything. Call backs almost never happen. The surgery also screwed up my referral to OT so I could be assessed to move and, although they have tried again I have heard nothing. Being in accessible accommodation might not even help anyway.

Mental Health.... In the last 6 months I have spoken to a few of them in hospital, been threatened ineffectively with being sectioned (which they will never do) and been assessed by the Access team twice but never been informed of the outcome because they have no intention of getting involved because they don't understand things even as well as the idiot GP's.

Family.... I haven't spoken to my youngest daughter for 2 years and she refuses to respond to calls or texts. I have seen my 2 grandchildren twice this year (on their birthdays in Jan and Feb) and my eldest daughter 3 times (with her children and also on her birthday). I have seen my son 6 times but only when either he wants me to do something for him or I offer to do something for him. The latter 2 answer my calls but won't help me with anything and sometimes offer to visit (like my daughter did last week about half-term?) but who usually don't arrive and don't call. Not only did I not get help or even a visit on Father's Day, I never even got a "Happy Fathers Day" message from anyone.

Medication.... I wear 3 Fentanyl patches that don't work properly and am supposed to take another 26 tablets a day only 2 of which have any effect. Almost all of this medication causes more pain than they cure. I have been forced to play around with what I have trying to find the most effective way of using it with no support because I cannot get any GP to try to help with it. It's all for pain control as my system is sensitive to anything else that might be useful.

The Ambulance Service....they are generally helpful but can only take me to A&E (who take no action) or refer me to MH or GP's (covered above).

The 111 service.... are mostly helpful (unless I get their version of an idiot 25% of the time) but who can also only refer me back to the GP (covered above).

The biggest physical problem is the continually expanding area of Neural Pain which has never been under control but the Chronic Pain isn't far behind. The CP exhibits in 5 or 6 places at any given time which change as the spine deteriorates every 2-3 months and require adjustment to at each move. The pain occurs at a combination of hips, knees, shins, ankles, upper arms, shoulders and neck and cause headaches and migraines often. In addition the circulation below my knees is restricted for no apparent reason and my toes are an odd colour and deteriorating too. My BP is also marginal but currently requires medication only when I am in trouble, like now. Mentally I am a complete mess with Severe Depression, Agoraphobia, Anxiety, Panic Attacks and total Paranoia. I am badly OCD which has gone from complicating matters to making some things downright impossible. Since becoming housebound I have begun to notice more and more frequent memory loss and blackouts. Initially these were measured in minutes but now in hours and, on one occasion, days.

A week ago an ambulance crew and a 111 doctor sent referrals to my surgery insisting on an immediate visit by a GP (both were ignored) and the GP who arranged for a blood test (regarding memory loss / blackouts) has not called me like he said he would. As I have had one (probably more) blackout this week I have had to cut back medication again (to make sure it isn't the cause) to ensure I haven't taken too much because I didn't remember taking it and repeated it accidentally.

I have tried to OD on everything I have medication wise and none of it worked and I am now in too much pain to go anywhere to walk into traffic, walk into a river or drop from a bridge so I cannot even find a way out. In desperation I tried calling The Samaritans but after listening to it ringing for 10 minutes gave up. I cannot even resort to self harm as my hands aren't strong enough.

If the leg exhibiting neural damage was amputated the pain would considerably lessen but they wont discuss it. If the patches were increased they would work better but they wont discuss that either. There might be a combination of neural pain killers that could help but again they wont discuss it.

I tried a shower last Sunday (first wash in 5 months) which resulted in feeling very ill for 24 hours, calling 111 to report vomiting and also resulted in a blackout. Even having care wouldn't sole that problem unless I'm in accessible accommodation first. I also vomited the next day and suffered awful withdrawal for another 48 hours because everything ran out and I was too ill to take more.

I have no way out, can't contact anyone and get so fed up with people telling me I can get help, which I patently cannot, if only I do "XYZ". All I do, every day, is recline in my chair with the TV on or try to sleep in said chair and I cannot even get interested in watching what is on the TV. Everything is just so pointless that I am back to not moving, not eating and only drinking now and again when I can be bothered. Even then it's only cold drinks as Coffee is too much pain and trouble now. I call people and it's busy or just rings or goes to voicemail and no one wants to help. I don't even find it funny now when I hear on TV someone giving a silly reason for not wanting to live, nor do I even bother to think that if they only knew just how bad things can get they might think twice. I must be on my thing two hundredth time now......

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


  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Oh @Topkitten, I'm so sorry to read this. You've had a really difficult time of it and I'm truly sorry to hear how professionals involved in your care and wellbeing have let you down. 

    It's good to know that you know who to contact in times of crisis, although I'm sorry to hear you had trouble getting through. Do know that whilst we can't directly assist, you're always welcome to come on the community and talk about what you're going through. We'll be here to listen, and we're all wishing only the best for you. How are things today?
  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
    edited November 2018
    Hello @Topkitten Understand a lot of what you are saying about yourself.

    I do appreciate the time and energy you have to contribute to the forum.

    May I raise one or two interesting points.  First thing the support services regarding mental health are overloaded, underfunded and I agree with you there but at the same time.

    In my opinion they do work if you wish them to work for you. Always in my life had female support workers.  Who come into my properties what ever they say and do.

    Some of them are critical and nit picking. I have to say am a gentleman old fashioned and never had a woman talk to me like that.

    Only my Mother would talk to me like that.

    Have to accept if they offer a plan, support any goals in agreement to do this. I am stubborn, critical and have certain personality clashes.

    So what do I do first time one of them walked out after ten minutes. Realised hang on need this.

    Suddenly woke up started to think if I could just for once sit down and listen, learn and be educated to what they are saying.

    I am a polite gentleman do not like being told what to do and hate telling others but sometimes you have be a smiley face be polite and kind, considerate.

    Remember these people are in a job started usually around early morning . Must tell you around 8.30  after 6pm some of them.

    Many have so many clients and time is limited . Reason am soon as I free from their well being programmes and all that then they have another client. Last mental health charity contract three years.

    Thing is the support you need is there and then the floodgates will open.  Access to better healthcare and support because that is what I found out.

    Be amicable, be sensitive, thoughtful and they will help you, be with you in the surgery.  Trust me been there and ignored.

    I had issues a problems with accessing the right help and support. Then I knew need them to help me. Be do a lot for myself as well.

    Including being clean, presentable and having a smart outlook on life. All hard to do.  Keeping a home neat and tidy but I enjoy it and love my new life.  

    Had got advocates, support services everything when I need it .

    Problem is you have to say to yourself I am ready to listen.

    That is the big issue to change and start to think straight. In previous posts many of our community members have tried to support, give you advice be a friend.

    I wanted to be one but instead you have hurt me and harmed me mentally with comments you have made.

    So add to that your comments on your post on Over weight as well.  Lots of the health issues you have are due to your diet. Not eating for days well you will black out.

    I have been like you had not eaten for days as well then I fainted, blacked out.  When I had my addiction.

    I do know what I talking about . Got loads of food qualifications and have sensible plans. In planning my dietary needs.

    Sorry what has happened my concern is you are a valued member and one time this time you need to know yes we may have obstinate views and opinions both of us.

    In the end you need to ask yourself what would you say to me if I was you.

    At the moment you have a ever recurring record in your head constantly. Do want to the record to be broken and start a fresh.

    Understand I had this similar record simply driving me mad so had to change. So I did.

    Also am of the age now need to find solace and peace, be happy. What would make you happy would be what then.

    Not suicide I have been there as well.   Those thoughts and feelings especially addiction withdrawal agony all the time.   So thought yes you are in pain but how and why can we as a community support you . Be a friend, be a member of the community, if you will not listen to others because your listening to yourself constantly.

    I was like that as well. Learnt that very quickly.  Especially with my addiction, see I talk bout it but in the positive sense not the hateful negative.

    Me having a drink problem was my record no I am a man, men do not have drink problems or mental health issues, be in pain and hurt. Well my friend they do and I am the result of that every day. Am in pain most days mentally and physically.

     I hope you do read this, because I do read your posts all the time.

    Thank you


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Topkitten
    Topkitten Community member Posts: 1,285 Pioneering
    edited November 2018
    Apologies @thespiceman but I cannot read all that, can't even read back all I wrote either, lol! Hopefully my quick scan has picked up the gist though.

    Mental health are, I agree, overloaded and underfunded but that isn't the problem. As I said I have been assessed twice in the last 6 months and a few times previously but the answer they come up with is always the same "If he received appropriate support from his GP most of his MH issues would diminish markedly" and that is probably a fair assessment. However, I will never get appropriate and sufficient support because the GP's are scared to make a mistake and have no script to follow. Finding one that is prepared to make such an effort is very very rare indeed and I have only had one such in 15 years. For 6 months we worked together and made good progress because she took time to read my notes and to call me and discuss how the medication was working (or not). Unfortunately she moved out of the area and I was assigned to a senior partner who immediately misdiagnosed me as suffering crumbling spine. He disregarded my comments completely with the statement "You don't know what you are talking about" repeatedly. My disagreements with him led to him refusing to speak to me and, considering his seniority, no other doctor in the practice would disagree with him and treat me correctly. When I finally gave up and complained to the Practise Manager properly the complaint was deliberately mishandled and ignored and I was soon de-registered (kicked out) with just 7 days notice to find a new surgery / GP and reinstate my medications. Being mostly housebound thanks to the idiot doctors refusal to medicate me for 4 or 5 months I went through hell, taking almost 3 months to sort out a new GP and prescriptions. That is how our great NHS treats people who disagree with a senior partner, even if they do it politely.

    As for treatment by MH.... I can't get that even if I needed it. They do not cater for housebound patients as they have no 1to1 in home services. Obviously that is about the most stupid thing as in a housebound situation most people would need more help, not less.

    I cannot get any help from MH and they will not even try to help. Even the "being sectioned" threat is completely pointless as they would have to take over my help and support and they have even less idea than most GP's for my particular issues. It's an "empty threat", in my case and was done to frighten me into accepting the woman's pov (which was wrong btw) and she never ever expected someone to jump at the chance.... hence her leaving my bedside just as quickly as she could without disturbing the other patients in EAU. If anything it was she that became frightened, lol!

    I do know how to contact Samaritans @Pippa_Scope and I also have the MH Crisis Line number as well but, and this is the real point, just talking about my situation, knowing full well there is no solution in advance, is simply more depressing than ever and has led to me getting stupid comments like "Stop being stupid and pull yourself together" which I got from the Crisis Team on one occasion. I have used both numbers and 2 others that are no longer available and also been in touch with MIND but none of them can offer help, especially in my current situation.

    @Pippa_Scope, physically I'm not so good as I made a final visit to the group run by MIND in order to say goodbye to the ones I missed a few months ago, which has helped with the mental issues a little. Unfortunately the 3 people I wanted to talk to were not there and, due to car park and withdrawal issues, I had to leave as soon as I arrived without even being able to drink the tea I got when I arrived. The venue is used by 2 or 3 different groups and some 30's woman with a small child pulled the "I'm more important and you have to move your car NOW" attitude, even though I said aloud it would mean going home and I had only just arrived and could I just drink my tea? She completely ignored my comments and unfortunately this is typical of the type, I'm afraid, and I have encountered it before and also in other situations. Like trying to enter a coffee shop while using 2 sticks with a strong spring on the door and one woman pushed past me (actually pushed me back outside, out of her way) whilst having the "I have a child in a pushchair which makes you a useless blockage to my more important need of egress" attitude.

    Whether my suffering from going out will cause a downturn in attitude overnight as I fully expect to suffer for 24 to 48 hours from the attempt. I will just have to see.

    I have decided to get hold of and fill in a DNR form (if I can ever ring the surgery and not get a busy signal). I must have made in excess of 30 attempts to call the GP surgery this week, with a good half dozen today (just to ask for the form) but every time all I got was a busy signal even though I spread the tries over 4 days and all hours of the working day. The surgery is pathetically overloaded to deal with such numbers of minor and non-existing problems, considering some of the general letters I have received regarding the type of reason for making appointments. It appears that a large number of people will not even purchase their own Paracetamol for very occasional headaches and expect to get it on prescription. One letter dealt with 20 cases when they would NOT prescribe medication for trivial issues. Most of the list made me just laugh ( at the time I still could laugh) at the expectations of some people when it comes to appointments and prescriptions.

    Sorry, I have waffled on for a long time and will stop now as the slight twist I have to make to use this Chromebook is fast becoming a problem.

    Thank you for your replies.

    Here's hoping I find a way out of this mess even if it isn't in a way acceptable to others. The statement "walk a mile in my shoes" comes to mind.

    "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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