Good afternoon - Newbie here

Hi I rang Carers UK for advice last night and was signposted to join this forum.

I’ve been a carer for over 30 years and quite frankly, I’m struggling a bit.

But its what we carers do, though, isn’t it? We manage.

I know that some parts of the country are better than others in providing support, I’m just unfortunate to live in a part that is pants. There’s no help from any organisation - charitable or State. It’s a “post code lottery” as they say - and I seem to never get a winning draw!

But here I am, saying hello - I’ve a lot of experience in coping when there’s noone around to support, so do feel free to ask if you think I can help.

((hugs)) to all who need them

Welcome to the forum, Igorina. We’re glad to have you and its nice that you’re also willing to provide some support. We hope you find our online community for unpaid carers helpful.
Best wishes

Hi Igorina,

Welcome to the forum. I have cared for a total of ten relatives with significant needs over 40 years, at one time all four parents and our son were entitled to highest DLA Care, busy years. Now just our son who is 41, brain damaged at birth. My top tip would to stop trying to be Superwoman, to yell “Help” instead. I learned the hard way that the more family carers do the less support they get!!

Would you like to tell us who you care for, and what you struggle with most. There might just be someone here who has met the same problem. I’m in Hampshire by the way, I’d never advise anyone to live here and anticipate support!!

Hello Bowling bun, Lizzie! Thanks for your shout-outs and welcome

My caring role? I care for my adult son who has a high functioning autism and severe physical disabilities arising from suspected (but not properly diagnosed) Ehrler’s Danlos Syndrome - he is currently bed bound - he has been for several years now. I’ve not had more than five hours sleep in years. I am a widow with no family either. Well, I say no family, I did, but I lost my sister to Coronavirus recently and my mother is in hospital right now. My Uncle is 80 and lives 200 miles away and I’m (hopefully) supporting him by phone daily.

Don’t be afraid to shout out for help? No, of course not!

But (and I say this gently so as not to alarm anyone) if you can imagine, someone lying in a bed with the same level of injuries as you’d see in a serious car accident and all you have been doing for the past four years is asking for help and the authorities just refuse, it gets a bit hard. I spent over five days last week trying to get hold of a GP. The GP did ring in the end but has chosen to do nothing. Yet another five days totally wasted.

*Sigh - look, its lockdown - we’re all up against it. Everything is on hold, the care act is suspended, theres no help from councils, or GPs and we just have to keep calm and coronavirus on, right?


Presumably you have tried for NHS Continuing Healthcare?

Welcome Igorina

My deepest Condolences for the loss of your sister.

How is your mother have you be able to have any contact with her.

Have you ever may contact with you local MP. They can be a great support when requesting services and not getting anywhere.

As you state services in your area are poor. Does that mean there is no local carer organisations.

Bowlingbun - thank you - yes many times. That’s what I should have for my son - NHS continuing Care and nursing support. Reality? Nah, not going to happen I’m afraid. I’ve given up after 4 years of trying. The GP said that my son is “too unstable” - he cannot access Continuing Care until his condition stabilises but without treatment (he’s deemed his injuries as “elective” so not able to access support for them) he won’t stabilise and continues to fall and be injured. Social Services say he’s not eligible for support because “they won’t deal with medical issues and until his medical situation is resolved they have no obiligation to provide social care as he is bed bound”.

Its a perfect storm really.

Sunny Disposition - hello! Thank you. I spoke to my mother by phone last night, she’s due to have an operation on Monday to see what’s going on with the cancer. She’s safe for now in an isolated room by herself and has tested negative for Covid thankfully. No, no help from my MP - this is a very ultra-Conservative council. Been there tried that and you can’t go to any other MPs under Parliamentary rules.

Even more disgraceful. If someone is above the level of support that SSD is obliged to provide, that’s the criteria for CHC!

I do hope the CUK helpline is dealing with this for you now?



So sorry for your recent loss.

It is totally disgraceful that you have been asking for help for five years without success.

I agree that if the need is too high for social services then it should be NHS continuing healthcare…but i know how hard it can be to get it.

There’s no way this should all fall to you.

You need someone who will help fight your case.

Social Services should be telling CHC that the care needs are too high. Usually, SSD like doing this as they then don’t have to provide services.
Presumably you son is on benefits, unable to work? If so, have you considered getting Legal Aid? It’s assessed on his income and assets, not yours.

Good evening Cloudy girl. Thanks - I’ve tried hun - honest! There isn’t actually any legal aid left in the UK now - not really. I have a case against my Landlords for something else but as soon as lockdown came, the solicitor has disappeared. Do you
know that it isn’t actually illegal to refuse to treat patients now? Doctors are “private” services CONTRACTED to the NHS. They aren’t actually part of the NHS. They have the right to refuse service or not deliver treatment if they deem it so, apparently. Yeah Human Rights act, European Rights but you can’t get legal aid for those cases any more.

Trust me - Ive tried it all. To no avail. And no - there’s no support or advocacy.

Do you mind if I don’t do any more answers on this subject now? I don’t feel it is very helpful - as lovely as you all are and I know how much you want to help but there simply is no help.

You are wrong, there IS still Legal Aid if it’s against an authority which has failed to comply with it’s statutory duties.
Google Legal Aid and the name of your town,