why does no one actually help?

[Londonbound]

I have emailed one place requesting specific unpaid carer information involving one of my caree's.

Received an email back, we don't advise on this, suggest you contact another 2 organisations.

I contacted the first organisation but again they don't provide this information and passed me onto another organisation.

The 2nd organisation i contacted has passed me on to 2 further organisations, both of whom i have contacted who have again passed me onto more organisations.

So that's 6? organisations i have contacted and not received the help and support and information.

What is wrong with all these organisations that they can't advise on this and can't advise on that.

Unpaid carers just don't have time to be contacting multiple organisations.

Why can't someone just say, I don't know the answer but give me a few days and i will get back to you.

No one seems to care anymore.

[bowlingbun]

I agree absolutely. SSD seem to be concentrating on getting me to shut up (never going to happen until my son has an accurate needs assessment and care plan) rather than sorting the plan out.
I should surely be the easiest person to satisfy, with my work experience and education.
How difficult can it be to
Arrange a road safety assessment on foot, and on a bike?
Do a "using the gas cooker" safety assessment?
Identify who his friends are?
Identify who is in his family?
Write down his hobby - steam engines?
Write down the food he likes?

So far, about 30 SSD staff have been involved, and 1800 pages of writing!
Still no progress on the above!

[Maine]

Hiya all, From my side of this, I have been through the same only I learnt from this experience. Now I pass the parcel to the allocated nurse who gets the run-around and has to tell me so. It's totally fair to place the burden on the services creating this problem. After all, they don't do anything else to assist my son and leave me to do more than my fair share without proper assistance with his health needs particularly.

[Londonbound]

It all just seems to be signposting not actually helping, just passing it onto to some one else to deal with.

Maine, thing is my carees just don't have have any assigned nurse/assigned staff, they are supposed to have a care plan and a care team according to NHS Guidelines.
There's no support worker/social worker or when there is , its we can't won't do that, you can't have that.

When i get on my soapbox and quote this that and the other, the NHS staff say oh we don't have to do this and we don't have to do that.

But these guidelines are to make sure the patient or service user as they are called gets the right treatment, help and support, physical and mental, to ensure good health and avoid lengthy and expensive hospital stays.

AND the guidelines include help and support for the family/unpaid carers, NOPE again its nothing to do with us or anyone to do with the NHS , we don't care.

Ignored and forgotten.

[Maine]

I agree with you Londonbound, I had all this all the way through my son's childhood and early adulthood. All through the '80s and '90s and up to 2006 I had no support for him whatsoever. In fact, he was almost 22 before any support was in place and that was only because he came out of the hospital on a 117 aftercare. Even after that, the support he was supposed to have was just in namesake and mainly non-active. Now it's exactly the same. He has a non-active nurse for his actual health and a consultant who misquotes anything I say. For example, I have told these two my son is housebound and will not get out of the car unless it's to go back into his home. So it is written 'he sometimes' doesn't leave the car.
Social worker? Nope, she's just been re-shuffled elsewhere and she did absolutely nothing during the whole of her allocation...just like the last one and all the previous ones.

[Londonbound]

Just to update i still haven't got the information i require, been given a few dud links, you phone up the place no we don't work
in your area, or just refer me straight back to the service in the first place.

I have now looked and after much researching found out the information i need.

Some of these organisations have been around for 30 years or more, they should know and be able to tell me this information but just don't.

I am disgusted with these so called charitys, they just don't care.