August 29, 2020 at 1:36 pm #189357Hi 12 years of multiple battles With Doc’s and Social Services
Hello All, our story starts nearly 13?years ago with our son. We were in luck and local specialist had come in automatically recognised son, mother and grandfathers myotonia. With little one in the incubator mother was diagnosed with adult onset had shown signs from Aged 21, doctors were completely clueless for the 7 years before birth of our boy!
Nottinghamshire looked after us excellently! I hope you all will have better luck than us, we moved back to Hampshire, they attacked us as soon as they started stripping Ehc and we said No! Whole family left physiology Damaged And cut off from Social except Disability allowance 4 years ago. Desperately requested help from all charities, advice yes, help they couldn’t. learned/ had no choice but to do it my own! We’re still in Hampshire but can’t change his school after what they and local Disabled Children’s Social Services did to the family. but the NHS Helps where they can. Been Shielding for 6 months looking forward to the next 6 months of Shielding with regular threats from the Social Services and his School. My partner hasn’t been herself since the birth of our last, it took her independence, walking and ability to deal with day to day without support. She has undiagnosed Prenatal and postnatal depression still continuing till this day. Getting help is incredibly difficult from not understanding GP and mental health but neurology understands what we’re going through but can’t get us the help we need. It’s hardest for our daughter who is without condition was his equal when she was 3 he was 7, Who has to help out how and then due to my Kidney Cancer, back to Carer duties day after OP. Just one of Long-term effects of being the only carer for 12 years. Others include PTSD, insomnia (4-5hrs/day sleep, migraines you just have to push through. You do what you have to do and just keep going never give up! That’s what they want you to do. Not a cry for help! just allow yours friends to help and connect with those who you might need help from in the future. If you have to deal with social services and you get that off feeling make sure you have advocacy with someone who really understands the condition is an absolute imperative in that first meeting in their offices!!!Carerof3myotonicParticipantPosts: 0Joined: 29/08/2020August 29, 2020 at 7:02 pm #189359Reply To: Hi 12 years of multiple battles With Doc’s and Social Services
Welcome to the forum. Your post has left me feeling frustrated that you and your family have not received the support that you should have. I understand what you mean that it is not a cry for help but this forum can help in many ways so please do, whether it is just to get things out, ask questions or if you require any signposting. It sounds like you have a pragmatic attitude to all you are dealing with but it might be helpful to explore the forum.
Glad you have come on board and all the very best to you and yours.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015August 30, 2020 at 12:48 pm #189361Reply To: Hi 12 years of multiple battles With Doc’s and Social Services
Hello and welcome Carerof3myotonic. I was so sad to read your story, I can but hope that your support increases, but as my fellow moderator has said, you seem to have the right attitude to help you through this. Please do feel free to come back, ask questions, rant, rave or even tell us happy stories about progress. We will do our best to help if we can.
So many love songs, so little love.embayweatherModeratorPosts: 8Joined: 02/11/2015
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