Mental Health - Struggling

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  • WhatThe
    WhatThe Online Community Member, Scope Member Posts: 2,675 Championing

    Dear Nashota, I can relate to so much of what you've described - years and years of battling to be heard (believed) and to be treated appropriately.

    I tried POhWER but my autism got in the way and POhWER discharged me which made me feel even worse! This was pre-diagnosis but my case was passed onto to a second advocate who also failed to understand that I couldn't compose a letter for myself. I could only explain things by telephone. I did manage that letter and got a medical record annotated because I was terrified that DWP would access this comment describing me as healthy but it was not how I imagined advocacy worked. I got what I wanted but it was a laboured and degrading process.

    There was once a GP in-house counsellor who fell asleep in my session. He denied it then fell asleep again. Then he admitted he was currently homeless and not sleeping. Obviously I didn't return but I was bereaved and too ill to complain on behalf of any future patients.

    Just before that I had been discharged from a temporary medical centre with even being told! I'd requested my third prescription of Zoladex and couldn't get it. This implant works miracles as you know! I'd fought for that endo diagnosis after being discharged from 7 different clinics at my local hospital and finally granted this expensive treatment only to be left to suffer again..

    I only needed three years of Zoladex before the menopause but it was life-changing to be without debilitating pain for half the month. My current medical centre had no qualms about the cost of that treatment but they all have budget constraints under CCG funding formulas. Practice managers are obliged to reject a certain number of referral requests. My GP was less enthusiastic when I asked for an autism assessment referral (why do you need one at your age?) then I had to battle again when the first assessor refused to confirm ASD. It took another two years to get a second referral for assessment and diagnosis.

    What I think is that we won't ever get an apology for poor GP services or medical error. That's my experience at least. I survived emergency surgery twice as a kid - overlooked both times because apparently I was "being too brave". Those medical records were destroyed when the hospital closed and it was years before I learned this and made any connection with my endo and mental health struggles. Trying to explain my digestive disorders to an obese gastroenterologist who didn't believe me was another low point.

    I've effectively had to identify all my conditions to 'experts'. Only my autism diagnosis set me free from punishing thoughts and doubts. I needed the diagnosis to believe it myself then begin to believe in myself. I now know how lucky I am to have survived all this and developed so much resilience. No amount of MH therapy or support was going to help me without that diagnosis. It was my teenage daughter who suggested it and she got hers confirmed after mine. Once I understood why and what it meant, I could see no prospect of change without it.

    I'm sorry my post is so long. That diagnosis is as important to you as it was/is to me. Lots of love ❤️

  • Nashota
    Nashota Online Community Member Posts: 453 Empowering

    Really @Albus_Scope ?! Did you have to complain or?

  • Albus_Scope
    Albus_Scope Posts: 8,327 Scope Online Community Coordinator

    I pestered a bit @Nashota, but didn't have to go for a full complaint. I understand things can get lost easily in the NHS as their systems are so antiquated, it was eventually sorted out, with a lot of apologies from the new practice. 😆

  • Nashota
    Nashota Online Community Member Posts: 453 Empowering

    @WhatThe No need to apologise, I'm not even taking anything in relation to the menopause.. I've tried 3 times now to speak to a GP about it, the first 2 were useless but the last one wasn't as useless, but I still felt like I wasn't properly listened to. I often feel like I'm not listened to.

    I'm sorry you've had a load of **** yourself, we are meant to be able to trust medical professionals, they have a duty of care but it seems that so many people are let down nowadays, I do understand that there is a shortage of staff in medical centres but it shouldn't take as long as it is doing to deal with my complaint or medical records.

    My son thinks he had ADD, I've said I'll support him if he wants to speak to a GP and have an assessment.

  • WhatThe
    WhatThe Online Community Member, Scope Member Posts: 2,675 Championing
    edited November 8

    I didn't need anything when I reached menopause - it was such a relief 😃

    I think we're just expected to give up and of course you musn't! There's no other explanation for the lack of attention given to complaints about essential services.

  • Nashota
    Nashota Online Community Member Posts: 453 Empowering

    I have different symptoms of perimenopause/menopause, I can't tell via my periods as I purposely have the contraceptive implant in to stop them due to me having a bad time with my periods of many years, as I got older I seemed to have less decent weeks until it was one decent week out of 4, I didn't know what it was exactly I just noticed that when I had the mirena coil that I stopped having issues with periods because I simply didn't have them anymore, I used the coil for years and then switch to the implant which also stopped them.

    I believe that I have PMDD, I've read that the contraceptive implant can help with the menopause but I've no idea, I will eventually get to speak to someone properly about it.

  • Nashota
    Nashota Online Community Member Posts: 453 Empowering

    I'm looking for opinions as I think I'm overthinking something but on the other hand I'm trying to be careful.

    At the beginning of 2023, we lost our Lab, Suzie due to 4 different vets taking guesses as to what was wrong with her and not listening to us as her humans, we knew her well me more so because I spent 99% of my time with her. Since we lost her I have obviously been very angry because of how they treated her and because they could have helped her if they had listened from the off and did the correct tests, I've also felt that my mental health both my depression and anxiety have become worse because Suzie helped me as much as I helped her (she also had quite bad anxiety). We did try and adopted a dog again later that year but it went pair shaped and we ended up having to ask the rescue to rehome him as he was just too much for us, we adopted Bronn from the same rescue, so we do still have a cat.

    Anyway, I want to buy a Labrador pup (I have reasons for not wanting to try and adopt again which I'm not going to go into) but my worry is that my PIP is currently being reviewed which I know will take up to a year or more but the last time it was reviewed they lowered for no valid reason which was overturned at the appeal stage (DWP changed the decision probably due to the GFPR they receive late because of Capita's mess ups), now I'm worried that it'll happen again OR that they'll remove it altogether the next time so it's putting me off getting a dog for obvious reasons at the moment, when we had to give the other dog back it really impacted my mental health as I wanted him to be part of our family, I wanted to help him. I was going to wait to see how the review goes but because of how I'm feeling mentally and the fact I really miss having a dog, having a dog gave me a routine and I actually went out for walks with my son and Suzie (less busier times due to my anxiety). I really don't know what to do. I can't even foster because we have a cat, otherwise I would have done that for a bit.

    I hope that I've made sense. It's a poopy part of the year for me, it's when my dad passed away and with it being darker and colder, it doesn't really help.

  • Nashota
    Nashota Online Community Member Posts: 453 Empowering

    Aww that's a shame, I was hoping for opinions on the above, maybe I ought to have posted it on it's own somewhere else but as it was partly to do with my mental health.

  • Andi66
    Andi66 Online Community Member Posts: 500 Pioneering

    So sorry, about your dog. I understand, been let down by a vet. On the pip front. Benefits and work website once joined offer access and things you can down load to help with these things, also there you can ask questions like on here. I had to go through a MR first , I had Capita who lied and had me in tears, who did half and had no notes recorded and had a second interview and had to start again. Luckily a friend was listening and wrote a letter which awarded me . My review was done without a interview and I got it. Go on the website.

    I'm waiting 11 months for my Esa review which is ridiculous .

  • Nashota
    Nashota Online Community Member Posts: 453 Empowering

    Yeah Capita are terrible, I made a complaint about their assessor, excuses excuses, then they slipped up and told me that they had requested a GPFR from the wrong medical centre which had taken them 2 months to correct, by which time because my award was almost ending, the CM went along with the report anyway, it was really stupid.

    I waited 4 years for my ESA review.. I then ended up doing a new ESA50.

  • Andi66
    Andi66 Online Community Member Posts: 500 Pioneering

    Trouble is Capita is my region, The assessor can be s first aider so no knowledge of autism etc. My friend put a complaint in about her.

  • Nashota
    Nashota Online Community Member Posts: 453 Empowering

    Oh yeah, mine was just a nurse apparently.

  • Andi66
    Andi66 Online Community Member Posts: 500 Pioneering

    Mine was the same one who did the 2nd interview as i recognised her voice , yet didnt record anything from the first part of what i said. So had to start again which threw me and caused mass anxiety attack, which made me cry.

  • Bluebell21
    Bluebell21 Online Community Member Posts: 5,384 Championing

    Hi @Nashota Pets really help with MH and having a dog would obviously really help you. As it could be some time before your review is completed, could you perhaps ask any family members you have if they could help with the cost of a puppy if for any reason your review does not go as well as you hope.

    This time of year with early dark night and cold and gloomy days we all need something to lift our moods.

    Good luck I hope you are able to find a solution and get a puppy to help you.

    Take care.

  • Nashota
    Nashota Online Community Member Posts: 453 Empowering

    Hi @Bluebell21 thanks for your response :)

    I was thinking the same to be honest, my son said once he's finished paying certain things off that he might be able to help and I was thinking about asking my mum about it, she's a pensioner though but she often spends money on us so the money in her account doesn't get too high, us being me and my son, at the same time I feel a bit weird and cheeky about it as I've been quite independent since I was in my teens, I'm sure my mum would help if needed.

    Yeah, that's true, it'll be 16 years since my dad passed on the 28th, it all adds together.

    Thanks again Bluebell, I appreciate your input.

  • Nashota
    Nashota Online Community Member Posts: 453 Empowering
    edited November 13

    I spoke to my mum about it and she said she'd be fine with it 😁

    I think when I get PIP again I might go and have a lookie for a Lab pup.

  • Bluebell21
    Bluebell21 Online Community Member Posts: 5,384 Championing

    I am so pleased for you. It will give you something to look forward to. Take care.

  • Nashota
    Nashota Online Community Member Posts: 453 Empowering

    Yeah it will and it'll give me a better routine, I have one to a degree with Bronn our cat, but we don't have to take Bronn for walks.

    Thanks again Bluebell 😁

  • Rachel_Scope
    Rachel_Scope Posts: 1,656 Scope Online Community Coordinator

    I'm so excited that you're getting a dog @Nashota! They definitely help with mental health and it'll be good for you to go on walks. Please keep us updated and send pics!

  • Catherine21
    Catherine21 Posts: 2,782 Championing

    Sorry to hear this you can request from hospitals doctors mental health do a SARS request I requested from doctors and cmht it's free you can go back years hope your feeling less anxious I put my review in June I'm not as stressed as they have massive backlog I actually forget x