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're social care

Kereen

My son has all is in place has you no we may be autisic but very different and I talk for England and he's selective mute. I had lots of one to one practical support by a PA but now I get nothing because I had to have free care about 4 months after a fall. I also have extras with my autism have lots of health I on no meds but sepratly dinosed with general anxiety gastric and hyper mobility and dyslexic to name few common ones that go with it. Had 2 assessments 1. By a social worker for mental health months a go. I complained and so I was intitled to a new one. I land up over lad few months losing my hearing due to age. Not young lol but not old old. Then badly hearing I had a social worker on disablied team. Same again referee me to A bunch of agencies including mental health matters money housing suggested I pay own cleaners go cooking classes. List goes on to many people 8 different referrals and sign post. I no I fit critira my health nor autism will get better now on top my hearing so till my hearing test comes up can not make complaints. This time I need further I need to go higher and need help to write the letters better from a educated person and or fill in ombudsmen stuff. How who does relay UK who can help we desperate neither of us can cook safely we wanted pancakes and set the thing on fire my son Burt himself. And home a right state is 4 hour support won't come in and social won't beleive then either. I can not get fear of taking on stairs lots of melt downs education lacy of sleap. I'm a deck because no help. Never much food if we hungry we get take out together online and rare buy online has it don't last like going getting long dates on bread. Ect anyone been here anyone no who can help we both on full pip universal and I still get carers. Fact is won't give me a carer assessment either over time use to get my own support plus 250 a year I would pay a deep clean so support can come in to support get us in a routine now nothing it's sad and stressing both of us out we live in our bedroom. Anyone had experience like this just left? 

Parents

  • Go and talk to an advocate. Go and request a needs assessment review with your local authority. If they are in education go talk to the schools SENCO lead. 

    social services will not give you a career or cleaner. But if you managed to get PIP you should be able to afford a cleaner a few hours a week. 

    social services will provide a support worker who will assist in interstate  into the wider community, assist you with doctors appointment & help find access to service. 
    you’ll need to request a need assessment they cannot deny a needs assessment once made. 

    if you are given a support worker or social worker they soon pull the plug if your unwilling to put in the effort yourself. You have to want to get better. 

  • in reply to Blue

    I have complex needs not just autism. I have health issues on top what do you mean last time I tried to carry sheets down stairs after a number of falls due to my knees bending backwards and extremely clumsy I fell last feburary smashed my tip and fib has pins and plates and told by physio to hold both grab rails and walk down back wards! I got free care till ran out by then no support worker could help with personal care so I lost them. If I help myself I land up either setting my home or food on fire in passed. Number of falls 

    I need support at most appointments like last op I needed asked all passed history I told in my way easy language. They did a superpubic witb no guide priced my bowel not bladder. I kept going back saying no water draining but bag smelled of waste! They Amit mistake and I took myself to another A and E when the hospital responsible would not take it out to stop pain and being sick and water backing to my kidneys that it was took put that night I don't even explain pain right.

    E.g. appendix thought it was bad stomoch bug brain was 7 but GP brushed it of as a bug. 2 weeks on I felt bad cramp stopped doing all activities friends came took me A and E if I did not go they would have bust so medical emergency op 

    I try to help myself please don't say I do.

    There are no advocote in my area so I fight alone and get no wear.

Reply
  • in reply to Blue

    I have complex needs not just autism. I have health issues on top what do you mean last time I tried to carry sheets down stairs after a number of falls due to my knees bending backwards and extremely clumsy I fell last feburary smashed my tip and fib has pins and plates and told by physio to hold both grab rails and walk down back wards! I got free care till ran out by then no support worker could help with personal care so I lost them. If I help myself I land up either setting my home or food on fire in passed. Number of falls 

    I need support at most appointments like last op I needed asked all passed history I told in my way easy language. They did a superpubic witb no guide priced my bowel not bladder. I kept going back saying no water draining but bag smelled of waste! They Amit mistake and I took myself to another A and E when the hospital responsible would not take it out to stop pain and being sick and water backing to my kidneys that it was took put that night I don't even explain pain right.

    E.g. appendix thought it was bad stomoch bug brain was 7 but GP brushed it of as a bug. 2 weeks on I felt bad cramp stopped doing all activities friends came took me A and E if I did not go they would have bust so medical emergency op 

    I try to help myself please don't say I do.

    There are no advocote in my area so I fight alone and get no wear.

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