Parents, carers and disabled parents
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Exhausted, caring for disabled daughter without support

shazelishazeli Member Posts: 1
I have two disabled daughters, only one of which now lives with me. She has Ehlers Danlos syndrome. Dislocates & sublaxes joints between 100/200 times a day. She is PEG fed and also has POTs, so passes out frequently too. Her brain fog is terrible. At present we have no support and I am exhausted from trying to do it all. 


  • buffalobuffalo Member Posts: 18 Listener
    ask your GP to refer your daughter for a CHC nursing care assessment .  her conditions would qualify her for some help and there is no xharge.  the route is through either GP or social services.  GP is better and quickest.  the decision is made fairly quickly.  
  • Blue FrogBlue Frog Member Posts: 373 Pioneering
    Hi @shazeli, welcome to the community. I didn't want to read your
    post and then not answer, it's just knowing how to find it (which is usually the last thing you have the time and energy for!) 

    Is your daughter an adult? It makes a difference as to where support can come from. Both adults and children can get Direct Payments or an Individualised Budget - to pay for care, and there are other ways but it can vary due to age/area you live in

    Either way you could be able to get help as a carer. Is there a Carers Centre or organisation like Crossroads near you? 
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