I have been missing a while — Scope | Disability forum
New to the community? Remember to read our community guidelines and our community house rules.
Concerned about another member's safety or wellbeing? Find out how to let us know.

I have been missing a while

Topkitten
Topkitten Member Posts: 1,285 Pioneering
Christmas is always my worst time of year, while other people get their family together my children sort their visits but leave me as an afterthought and fitted in whenever they have nothing better to do. This year is the absolute worst though. My kids forgot or ignored my birthday in early December and on top of my usual misery my spinal condition decided to have another bad change which has left me worse off than ever. Realistically I should not walk at all now and stick to a wheelchair but my home isn't suitable and the report I need to prove to the council I need such a place still hasn't been done despite asking for the GP to refer me last April. The surgery is so incompetent they cannot even arrange what I need to get away from them.

Evidently the woman who is supposed to handle such referrals doesn't work at any surgery they run, has no access to patient records or doctors and had never actually done such a referral before and rang me to help her fill the form in. That was 3 months ago and I've heard nothing so they have screwed it up for the second time. I can't chase it any more as they seem to have implemented a policy preventing me talking to any doctor twice. Obviously this helps them cover up their incompetence. Doctors say they will look into things and call back and then don't bother to.

I now cannot use the main medication that has kept me going as I end up going into withdrawal every day. I've stopped using it as it was depressing me more than ever. I have been so low I tried to suicide 3 or 4 time over the last month. Obviously I am a complete failure at everything now, lol!

So...... pain completely out of control, no GP support at all, MH and Social Care up in arms at my attempts but both passing the buck elsewhere and doing nothing themselves.

I never realised that life could be quite so bad and hopeless as it is now. Sitting in a chair and watching TV 20 hours a day is no fun but doing stuff hurts too much. I try to only leave the chair I live in once or twice a day and never more that 3 times. Yesterday though I had a stomach problem and needed the toilet 6 or 7 times. The pain ended up so bad I was in A&E this morning, not that they did anything at all and after a blood test and a chat with a doctor I was sent home 5 hours after I arrived and had no treatment whatsoever.

Ain't life great?

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.

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,682 Disability Gamechanger
    Welcome back @Topkitten - it is good to have you back.

    I am sorry to hear you have had such a rough time over Christmas and since then, I know we have given lots of information to you before and you feel it hasnt been too helpful. 

    Have you spoken to the Samaritans? Does that help at all? You can call them on 116 123.

    Im sorry to hear you feel let down by your GP, it sounds very frustrating - have you thought about speaking to PALS? 

    The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers.

    How can PALS help?

    PALS provides help in many ways. For example, it can:

    • help you with health-related questions
    • help resolve concerns or problems when you're using the NHS
    • tell you how to get more involved in your own healthcare

    PALS can give you information about:

    • the NHS
    • the NHS complaints procedure, including how to get independent help if you want to make a complaint
    • support groups outside the NHS

    PALS also helps to improve the NHS by listening to your concerns and suggestions.

    How do I contact my nearest PALS?

    You can find your nearest PALS office on the NHS website.  

    You can also ask your GP surgery, hospital or phone NHS 111 for details of your nearest PALS.

    Scope
    Senior online community officer
  • wilko
    wilko Member Posts: 2,415 Disability Gamechanger
    Welcome back, you have been missed hope you won’t feel lonely being back in the scope community, your blood family may find it difficult to visit you for what ever their reasons, but we here the posters thank you for your comments and company. Prayers to you and all who need and request them.
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    Ty for the replies but (as I have told many an ambulance crew) I really have tried everything.

    I am certain that PALS are for complaints against a hospital and not for GP's. For them I have contacted NHS England. I have tried to complain to PALS regarding a surgery that was taken away due to a mistake by Orthopaedics but both emails were completely ignored. As for the GP issues.... I have emailed NHS England 5 times with ongoing and new issues and on 3 of those asked for a formal complaint to be raised. On each occasion they quietly sent the problem back to the GP and each time a specific doctor has rung me and done the following....

    Deny any and all knowledge of any issues.
    Deflect anything I have said by either saying it wasn't him or I needed to speak to so and so.
    He then suggests a way forward which he obviously has no authority to enact and which either doesn't happen or I just got a single call or visit.

    Ofc the first line of complaint at any surgery is to raise a proper complaint with the Practice Manager but she refused to let me do so or even discuss any problem I had with any GP or any action they had / hadn't carried out.

    In the past I have tried complaining to my MP but since the Conservatives took the seat he refuses to do anything about it or get involved, he just passes it back to whomever it is about for an internal system to handle. Ofc this always results in a whitewash.

    I did try to use PALS years ago with a complaint I had regarding the Pain Clinic which was, at that time, under hospital control. It resulted in me getting a single appointment with no benefit and earlier records altered deliberately to cover up the mistake.

    I don't know if it is just this area that does this but every part of the health and social systems just circle the wagons to cover each other and cooperate with the complaint handlers to do likewise.

    I am not frustrated although I did used to be, I am just beyond the point in caring any longer. I am not allowed proper support or to be able to get it improved. I am not allowed any assistance in day-to-day functionality. I am also not allowed anything at all from anyone that might improve my situation, nor even to move away from it. Every part of the system is secretive, sly and prepared to use lies to cover anything up.

    I really care no longer.

    Yesterday I tried one last time.... I was close to taking too much medication yet again so I called the 111 service at 10pm Monday evening. They said I needed an ambulance. It was 3 hours before a paramedic rang and agreed I needed to be seen. It was 4 hours before the ambulance arrived at 5pm. After a brief check over they took me to A&E although didn't seem particularly bothered whether I went or not. I was in A&E 3 hours before a doctor saw me and the result was then to wait 4 hours for transport home which I only got because I had no other alternative. Evidently being unable to walk, having no family to pick me up and no money for a taxi is not a good reason for transport even though I am now 62.

    I went because the paramedic was concerned that my issues could mean problems with circulation or bowel problems. Not once, from the time the ambulance arrived until I got home was either the leg or bowel looked at to confirm or deny his fears. Also, despite horrendous pain which had started it off, at no point was I provided with any medication assistance and, if I hadn't taken my own with me I would have ended up worse off.

    The transport home issue ofc precludes me from ever going to A&E in the future.

    I really hope my situation and support is as unique as my condition. I would hate to think anyone else gets equally badly treated.

    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.
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,799 Disability Gamechanger
    I just wanted to say welcome back @Topkitten, and I hope that, in spite of everything, 2019 is as kind as possible to you. At the very least, we'll always be here to listen and offer support wherever we can. 

Brightness

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.

Fancy a chat in our virtual coffee lounge?

Put the kettle on and have a chat in our coffee lounge with other members. We talk about hobbies, games and anything else you can think of!

Cerebral Palsy (CP) Online Cafe

Here's a new opportunity for people with CP or a similar disability (aged 20+) to get together and chat. The sessions are in partnership with CP Sport so you can find out more and meet people from both organisations.

Are you struggling?

Read our 'Coping with stress, low mood and isolation' support thread for a run-down of ideas on how to banish those blues and feel happier.

What do you think about the community?

Complete our feedback form and tell us how we can make the community a better space for you.

Information about COVID-19

If you have questions about the virus, please read our information and support which includes guidance on benefits, getting food and essentials and Cerebral Palsy.

Back to school this September?

Read tips on how to settle back in and handle any worries you or your children might be having this new term.