"paying for respite care"

About: Liverpool / Social Services NHS Liverpool CCG

(as a carer),

my 29year old daughter has a terminal progressive genetic brain disease called metachromatic leukodystrophy. She cant do anything for herself, is in a wheelchair, is doubly incontinent, has a PEG tube fitted as she is loosing the ability to swallow, can not communicate and has seizures. she was fully funded by health care until a recent review (which I was not at) who decided she wasnt fully funded anymore and removed her. She lives with me and I am her man carer and stopped work to care for her as working and caring was too much for me. in June his year after not having a break for my caring roll for over 2 years I managed to find a residential home where she could go for respite to give me a break, nothing was mentioned about having to contribute to this and she does not currently pay towards the care she receives at home. I then recieved a bill from the care home for 171. 68! ! why? nobody can seem to tell me, I am supposed to be going away with my other daughter and my grandson who live in Aberdeen so I can spend some time with them as currently I cant go out due to my caring responsibilities, however the care home want another 171. 68 to care for her again! !

I feel this is so unfair, I cant go out when I like, cant work or go to college, get bedroom taxed even tho I cant move as alterations have been done at the property, get money taken off my housing benefit as she is classed as a non dependant for rent purposes, I get carers allowance with income support top up, but this is taken from my daughters severe disablement money, the care she receives is from an agency that the CQC has deemed unsafe, who send untrained staff as many as 20 in a week. So much for carer rights and help, I am depressed run down and feel totally alone, why is this allowed to happen when all I am trying to do is care for my girl the best can and try and have a bit of a life. No one cares about the carer and at times I think this isnt a life its a sentence and maybe id be better off dead

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Response from Sarah Dewar, Third Sector & Environmental Sustainability Lead, NHS Liverpool CCG

Dear Carer,

I'm so sorry to hear of the difficult time you and your family are facing. It does seem like you should be getting better support. Liverpool City Council fund a service for carers, I am not sure whether you have been in touch but I think a call to them with an update on your situation would definitely be worthwhile.

You can reach the Carers Centre by calling 0151 705 2307, or emailing healthandwellbeing@localsolutions.org.uk

and they are at Local Solutions, Mount Vernon Green, Hall Lane, Liverpool, L7 8TF

To discuss the support for your daughter you can get help from Careline on 0151 233 3800.

And if after this you would like some support more generally or in getting the help you need you could speak to HealthWatch Liverpool on 0300 77 77 007 or by email to enquiries@healthwatchliverpool.co.uk

I really do hope you can get the help you need in place quickly. Do let us know if this isn't helpful.

Very best wishes to you and your family


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