Not one break for just over 7 years and still counting

Hi All

Other than writing to the newspapers who would you ask to advocate for you about the law and CCG, I am now down to 2 PA’s that are paid from the personal health budget, which I am not allowed to touch. My daughter suffers a severe form of autism that so difficult for the professionals to understand, because of the lack of support she has become a routine recluse in the home.

I lost my hubby just over 3 years ago and he was the only one who can give me a rest, now it’s just me and my daughter, and the constant bribes from the Nelft, NHS and CCG about what they want me to do. Since losing my hubby the PA’s tell me when they might be coming even though they expect their pay in full. I haven’t been given a chance to grieve my loss. CCG have not funded my daughter for over a year has they rather pay babysitters for me to go out shopping for food, my daughter would rather stay in the home now. I asked what would happen if I die, the behavioural specialist told me to ring 999 and they will have to deal with me and my daughter.

I sent a report to the Disability Law Service and they told me they do not deal with CCG disputes, I rang the Citizen Advice and they gave me an email for Voiceability who so far after 2 weeks have ignored my email. So any one on here would know where I can get help. There’s volumes of trouble with these people and at 67 and not yet claiming my state pension really don’t know where to go.


Hi Petty

You need to talk to someone who can maybe point you in the right direction: I suggest you start with the Helpline. It’s open Monday to Friday 9-6pm on 0808 808 7777.

Thanks Charles, will when I get the chance to ring and get something, this cannot go on


When did you last have a Carers Assessment?
I’m 70, with health issues. My son was brain damaged at birth, lives in his own flat with carer support, and lots from me too. I’m keen to “future proof” his care but no one seem to understand. I know how devastated he was when his dad died. It will be so much worse when I die.

I have to beg for a carers assessment and finally got a locum social worker to do a tick box one on zoom in January, he told me all I be getting is £300 to spend in a gym. That’s all waltham forest carers get, I had to write several emails to see a copy of the done assessment and when I got it 5 months later, it does not reflect anything to do with me as a carer, does not reflect that I cat nap instead of going to bed, does not reflect that my daughter’s screeching has made me lose my hearing.

I was told by the council that my daughters package should cover me for respite and it’s in the hands of the CCG. I am now being asked to pay for 2 days maybe I will get in September, (she may or may not go as it is difficult to get her out of the house) and it will cost me £1500.00 as I am expected to pay for the carers accommodation, 3 or 4 of them and their transport. I have told them I will not pay that

I was told by the Citizens Advice Bureau to get in touch with Voiceability, I also got in touch with Healthwatch who told me to get in touch with them as well. Got in touch with Voiceabiltiy and they told me to get in touch with Healthwatch. Seems neither the DLS, CAB, Healthwatch and Voiceability have any idea to deal with this and personally with those so called professional people not sure whether ringing this helpline would benefit me either.

Looks like I am having to internet private solicitors and get hold of the media to expose the abuse of money the council and CCG have done to this family.

Thanks for reading, caring has a new dimension called till death us do part


HI Petty,

This all sounds so stressful.

Social care is so short sighted. If you collapse of exhaustion and can no longer care, it will cost them a whole lot more than a respite break.

did you contact the Carers Uk helpline? It’s open Monday to Friday 9-6pm on 0808 808 7777.What did they say?


Petty this is not rare sadly. Perhaps ask for another needs assessment to be done. Or see if you can find another social worker who can truly help you to cope. There are some good ones who are out there who are hidden amongst all of the cowboy social workers etc. You can definitely find a decent one. Tell us more about your daughter. Maybe also try submitting a formal complaint regarding social services.

unfortunately it’s pot luck which social worker you get and social workers have to get authorisation from their manager …


Hello Petty

Please check your inbox I have forwarded you a response from our adviceline.

many thanks

Thanks for the message, I have found out it’s a very complex case I am dealing with, true I might have to seek legal advice from a private solicitor and pay. Seems to be unbelievable as my daughters autism doesn’t conform to their standards of what they expect her to do.

All I can say is thank you for listening, if I have found some good news I will share it.


If your sister has under £8,000 she may be eligible for Legal Aid. Your own finances should not be considered.