Great Ormond st Hospital

I have been on the phone for an hour to GOSH about my sons care, treatment and diagnosis. They said they would be able to speak with me at 8.30. I am beside myself with worry about my disabled child and SS keep abusing me when I am asking for help. He is being locked up every night by his dad. SS out of hours have told me that they have been given specific instructions to ignore my calls for help for my sick child. i have tried to explain this this is discrimination. But they are shsouting at me and telling me that unless GOSH tells them what to do they wont help my sick child. He is being left to die. please someone help me.

Lucy, we can only advise about things we have personal experience of, and no one here has been in the situation you are in. All I can add is that your child maybe entitled to Legal Aid in his own right. Search for “legal aid + the name of your home town”.

I have just been shouted at by staff at GOSH. I am scared. They told me to call my local adult mental health team and to keep my mouth shut. I am terrified for my son now.

GOSH keep trying to refer me to adult services when i am raising my concerns about a disabled child. I am scared


I’m sorry you are scared.

On this forum, we are a relatively small group of carers past and present. We cannot act on your behalf, only offer experience of what we know.

I believe Carers Uk have PM’d you with suggestions of action you could take.

You could also request an advocate to represent your point of view. The professionals you are trying to convince might respond better to an advocate who will be able to put across your views without being emotionally involved.

I’m sorry, but I have no more advice to give.


I am sorry for asking for help. I called GOSH who diagnosed him and theyve told me to shut up. the social workers are shouting over me too, I am trying to get help for my son. The services that are supposed to be helping him are shutting me down. i dot understand why this is happening

When you are on the telephone have your answer machine on then you can record anyone being abusive and telling you to shut up. If you haven’t a machine they are not expensive.
Melly’s suggestion is sound advice. An advocate will be good. She, along with many of us have had battles to help loved ones. Try to help each other, and live in different county’s
I too am sorry you are scared.
You have posted on many different threads on the forum. Not really advisable.
I have exhausted my thoughts on how to support you.
As said in another post I hope you find the answers you are looking for.

Hello Lucy

I’m not sure about this but why not call Citizens Advice? It isn’t simply financial advice they offer. If you’ve exhausted most approaches it might be worth a chat with someone from them.

Best wishes, David

I have called lawyers and they say it will cost 10k to get help for my son. I am basically being told to let him die while he is with his dad. I am so frightened for him. I cant go on like this. I am literally begging for help with him.

He is entitled to free legal representation if the council are not complying with their legal duties, if he is a child.

the La are not doing very basic things. I am really scared now. I have been keeping trying to get an explanation for his medical situation. He has thinning of corpus callosum. His MRI says this. My understanding is that this is known to cause all sorts of problems. Learning difficulites, seizures, sleep problems and ADD. From talking to the other families this is a known symptom of the disorder.

Lucy, we understand how worried you are, but you MUST use your energy now to get your son the Legal Aid that he is entitled to.
Stay focussed on that goal. Keep a diary, but don’t keep wasting your energy on things that won’t get you any further.
I know how frustrating and horrible Social Services can be. It is time to go down the legal route.

i have been told that if he is locked in his bedroom and having seizures that are not being treated then this could be causing him further brain damage. i cant afford legal help for him. When i speak to doctors online they say i must inform the authtorities whcih i have done

Re legal aid for disabled children:


PS S has had legal twice - as a child and as a teenager - certainly makes social care, health and education start doing their jobs properly.

i am frightened, I know he needs to be removed from his fathers care. He is being left to die there…

Lucy, we get that, but you need professional legal help, we can’t give you the help you need.
Legal Aid is available FREE for your son if he meets the criteria.
Concentrate your energy on getting Legal Aid for him.


I feel a bit better. i got a call from GOSH today. They have agreed to have a call with the local paediatricians and social worker. they want to explain in a bit more detail for disorder he has so that the local team know what they should be looking for. i am beyond horrified what i have had to go through to get help for this. and still there is no real sign of it abating. i think they think i am over reacting when i am not.

A childs life is being put at risk by all of this. And yes it has made me feel sick with worry. I am exhausted!

If you applied on his behalf for Legal Aid, then you wouldn’t feel so alone, a solicitor would fight the LA on your son’s behalf.
Do you understand that Legal Aid is a special scheme, it is NOT the same as going to a local solicitor and asking them to write a letter for you?

i understand this completely. But BUT my sons dad who is locking him up every day is refusing to provide information that even allows him to have legal aid. I have spoken to the police just now who agree that this is illegal. unbelievable