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No help out there :(

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redroses91
redroses91 Community member Posts: 39 Courageous
I am really struggling right now. Not eating or sleeping. Feeling overwhelmed as a lot is happening. I have autism. I have a mental health team and used to have a cpn but she left and we came to the mutual agreement that a future cpn wouldn’t be beneficial (tho I really could do with one rn). I got told they are recruiting new CPNS and even if I wanted one wouldn’t be possible. So all I have left is a consultant I see every 6 months. I requested to be referred to a support worker as I need help with day to day things and just to be in the background but with the way services are at the moment, how long is a piece of string. I understand everywhere is stretched. Do I go back to my GP? I don’t want to go on medication as it doesn’t work for me I just need someone to talk to, someone I don’t have to explain my background and what my situation is every 5 mins but a consistent person that’s what would help the most and it’s what kind of is my “medication” and can help with Uc because it might look like I can cope as I’m meant to be an adult but I just can’t and I beat myself up that I can’t and it’s one big spiral. I don’t have the capacity sometimes to understand what uc or whatever service it may be is saying to me on the phone or appointment. I can’t retain a lot of information. 

I just feel very alone and not able to turn anywhere for support, especially with everything I’m having to deal with right now. Ex partner moving out, Uc claim etc.. 

feels good to get this off my chest as I haven’t been able to say, Ngl I’m struggling rn. 

Comments

  • SueHeath
    SueHeath Community member Posts: 12,420 Disability Gamechanger
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    Good morning @redroses91 and welcome to our great group, i'm sorry to hear about your struggles, but it's great you've joined the forum.
    When your ready have a look around the site, we have lot's going on,any problems just ask, some one is bound to be on line. Enjoy 
  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
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    Hello @redroses91

    Please keep an eye out for an email from community@scope.org.uk :) 
    Hannah - She / Her

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
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  • Stellar
    Stellar Community member Posts: 131 Pioneering
    edited March 2023
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    your best option is to go private for therapy or look for free or discounted therapy via charities regarding mental health.

    NHS mental health support in practise dosen't exist. same with social care unless you bug them so much it's borderline harrassment.

    additionally there may be local advocacy charities near you that are worth contacting to help you communicate with services.

  • JBS2022
    JBS2022 Scope Member Posts: 2,075 Disability Gamechanger
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    I know how you feel me and my husband's mother have been trying to get my husband a psychiatric evaluation( he has Schizophrenia) he has gone completely off the rails to the extent that he knocked down a wall in our rented property. Unfortunately the NHS won't do anything unless he's dangerous so I guess I'm gonna have to pay for private intervention. It's a really difficult situation and it seems paying is the only option for lots of people.
    Life is better in a fishtank  🐟
  • redroses91
    redroses91 Community member Posts: 39 Courageous
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    I’m sorry to hear that @JBS2022 it’s awful that someone has to get to the point of crisis for them to do anything and it’s just so wrong everything is privatising. These are peoples life’s and the gov just doesn’t care. :(

  • JBS2022
    JBS2022 Scope Member Posts: 2,075 Disability Gamechanger
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    I blame COVID for a lot of the issues, services are just so overstretched. It's sad that mental health issues that could be treated are deteriorating to the point of crisis.
    Life is better in a fishtank  🐟
  • redroses91
    redroses91 Community member Posts: 39 Courageous
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    @JBS2022 I agree covid has made things a lot worse. It was also happening before covid but not to this level. In my opinion the mental health system has been “the silent pandemic” since the Tories got into power and covid finished it off. 
    My daughters dad died because of the failings of his mental health team in 2015. 
  • JBS2022
    JBS2022 Scope Member Posts: 2,075 Disability Gamechanger
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    @JBS2022 I agree covid has made things a lot worse. It was also happening before covid but not to this level. In my opinion the mental health system has been “the silent pandemic” since the Tories got into power and covid finished it off. 
    My daughters dad died because of the failings of his mental health team in 2015. 
    Interestingly I never had issues accessing mental health services for my partner before 2020, but I agree others have had issues before then that are well documented, more money needs to be allocated to improve care, I've lost many family members due to failures in mental health services. 
    Life is better in a fishtank  🐟
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
    edited March 2023
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    It sounds like you are experiencing a really difficult time at the moment @redroses91, especially with a lack of support (particularly from a CPN). I can hear how this is affecting your eating and sleeping and causing you to feel overwhelmed, especially as you have autism.

    I am hearing the importance of more regular support for you, particularly with day-to-day things. Have you tried to contact your GP or another healthcare professional within the NHS about a needs assessment?

    Consistency is key, especially for us autistic people (I am a fellow autistic!). You are doing better than you realise and it is super brave of you for being honest about how you are feeling and coping.

    In terms of your ex-partner moving out and UC claim, do you have any particular questions or concerns at the moment that we might be able to support you with? We are here for you and listening to you if you would like to discuss any of this further or if there's anything, in particular, we can do to support you  <3

    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    Thanks everyone for sharing your tips and experiences. This will be invaluable for anyone experiencing anything similar. 

    @JBS2022 I just wanted to check in with you and ask you how you are managing at the moment. It sounds like you are going through a particularly difficult time, too, and we are here for you if there's anything we can do to support you  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • durhamjaide2001
    durhamjaide2001 Community Co-Production Group, Scope Member Posts: 10,884 Disability Gamechanger
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    I'm going through a difficult time as well we are trying to get an advocate for me hugs to everyone who's struggling on here. We are in this together. We can do this together. 
  • JBS2022
    JBS2022 Scope Member Posts: 2,075 Disability Gamechanger
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    Thanks everyone for sharing your tips and experiences. This will be invaluable for anyone experiencing anything similar. 

    @JBS2022 I just wanted to check in with you and ask you how you are managing at the moment. It sounds like you are going through a particularly difficult time, too, and we are here for you if there's anything we can do to support you  :)
    My GP is referring my husband to a mental health social worker, so hopefully he and I will receive the support we both need.
    Life is better in a fishtank  🐟
  • durhamjaide2001
    durhamjaide2001 Community Co-Production Group, Scope Member Posts: 10,884 Disability Gamechanger
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    I'm glad you have managed to gain the support you are needing for you and your husband but is there any help and support for you.
  • rebel11
    rebel11 Community member Posts: 1,664 Pioneering
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    JBS2022 said:
    I blame COVID for a lot of the issues, services are just so overstretched. It's sad that mental health issues that could be treated are deteriorating to the point of crisis.
    COVID, yes, but things have been going down hill for a long time, not enough investment, not enough Doctors etc. COVID has just accelerated the decline, that is where we are now. What is more important then mind and body? - nothing.  
  • JBS2022
    JBS2022 Scope Member Posts: 2,075 Disability Gamechanger
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    rebel11 said:
    JBS2022 said:
    I blame COVID for a lot of the issues, services are just so overstretched. It's sad that mental health issues that could be treated are deteriorating to the point of crisis.
    COVID, yes, but things have been going down hill for a long time, not enough investment, not enough Doctors etc. COVID has just accelerated the decline, that is where we are now. What is more important then mind and body? - nothing.  
    Things definately need to improve, luckily my hubby is being referred to see a mental health worker. So fingers crossed things work out.
    Life is better in a fishtank  🐟
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    That sounds positive @JBS2022 we'll keep our fingers crossed for you moving forward :)
    Online Community Coordinator
    Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to give us feedback? Complete our feedback form now.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
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    That's great to hear @JBS2022! Wishing you both the best of luck with this. 

    Please feel free to let us know how it goes and if there's anything else we can do to support you both / either of you  :)
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • FrankV
    FrankV Community member Posts: 23 Connected
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    @JBS2022 I hear and feel your pain, but the level of professional help out there is a disgrace. I have been subjected to self harm twice in a court room in the UK and neither of the Judges did anything to help, in fact one of the Judges actually called security for their own protection rather than demonstrate any concern for my security. It's 2023 and yet it feels like we are still living in the dark ages when it comes to mental health welfare, despite all the legislation being passed, ie (in)Equality Act 2010 (which no one seems to know how to apply in the real world)! Sad to say, you're on your own and just be there and be strong for your husband, us men really struggle when facing mental health related breakdowns because we are supposed to 'man up and be strong', but we also reach points in our lives when we need support. A tip for the future, research s15 of the Equality Act and make sure you fully understand it. study chapter 6 in this publicservicesstatutorycodeofpractice it will be very useful to you and your husband, and especially when someone 'throws' their zero tolerance policy at you/him.

    Before anyone comments on my post, please DO NOT empathise with me OR signpost me to any of these charities that are supposed to provide support as it is a trigger to my mental health and will likely have a detrimental effect on my person.

    Please do NOT signpost me to the general charities which include MIND or SAMARITANS etc for help because that is a trigger for my anxiety. I know you mean well, but everyone is different and it just does not work for me, I've tried. 
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