Fibromyalgia Action UK
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Really don't know what to do....Council help is no help at all !

Hi well we are back to square 1 as usual!!

My health has really deteriated this last six months ..from me driving and living with Fibro CVFS only to name a few.....I cannot walk so have a scooter,My husband is my main carer who dresses me, cooks cleans and helps me move from chair to stairlift and to the loo.

Over the past week alone if he had not caught me or already been holding me up I would have fallen 16 times and had to call for help on my alarm,as he cannot lift me!!

My reason for telling you this is. My OH has PTSD and has to go into a remedial treatment centre for 6 weeks a year for therapy just to cope.I used to look after him for the last 21 years.

A social worker came to see us last November and said we will cover your care when he goes away! Nov he was in hospital no one came! Then they said we can get a payment in jan for us to pay a carer to come in.....It was rejected because I have a call button and if I fall paramedics will come within the hr...( gee thanks!! )............. She then re applied and we were offered 3 half hr stints to help me and to give him a break ( no good at all )..... then last week in jan they said that it would cost £200 a night for night care and it was too much,so they sudgested I stayed in bed all night till the carer could get me up between 7 and 11. No good either. ..............Then last week the woman called again and I said I have found someone to be here all night for 14 nights for £500.....and day carers at £10 an hr so the bill instead of being 4 grand would be £1500.................................YES you guessed it they turned that down too,saying I don't need anyone there all the time because I have the alarm..............................Worried sick now as he goes away april 2nd and I have no cover except the 3 half hr visits!!!

What on earth they think I will do is beyond belief, I cant always walk from the loo to my bed,and when I get there I cannot lift my legs into bed as the don't move and my OH lifts them in for me. So they sudgested I have a commode by my I cannot get back into bed,,......Oh I know I can call out a paramedic....SORTED!!!!

Sorry to go on but at the end of my tether so to speak. ;-(

Gentle hugs (((((((((((((((((((((((((((((((( :-) )))))))))))))))))))))))))))))))))))

Rainbow x x x x

4 Replies

That's terrible, Rainbow! I don't know what to suggest - which area do you live in?

Moffy x


That's awful I don't know how they expect you to cope like that. I hope your hubby is ok btw and that you somehow find a solution (or a dishy paramedic ;-)

Storm x


A lot of local authorities do not pay for overnight care, I suggest you appeal and put in a complaint about the system, it can be turned around.

I have put in many packages for under 65s with night care. As for the 3 x 30 min calls, appeal this too. I have 45 mins in the morning and 3 times a week an hour to have my hair washed. I also have direct payment equivalent to 4 calls a day, so you are one call short of this.

Play on the fact that you cannot get in and out of bed unaided. They may send an OT in to double check.

Your husband is saving the council thousands by assisting you. During the time he is away, you will probably need help with essential cleaning, laundry and possibly shopping unless you do online. You are well within your rights to ask for permanent care instead of just when he is away.

Did your husband get asked for a carers assessment in his own right. It is required by law to ask. He could be entitled to services himself. We have done gym membership, massages, driving lessons, etc as gives them a break and someone could sit with you.

You are also entitled to receive your package via a direct payment, so you can purchase your own care if you wanted.

I suggest on Monday morning you call the councils customer relations team to put in a formal complaint about the treatment you have been given and let the social worker know, especially if she has been good to you. I would want to know before it comes through.

If you need any other information and advice let me know.

Good luck



Hi Jo have had three appeals or other offers should I say. The social worker has been here with an OT and seen I cannot walk and cannot get into bed,if I get up on my own from a chair I often fall backwards,this is being looked into by my Dr. they are going to give me direct payment for 3 visits a day an hour at a time. my Husband had a carers assessment as you said and we were then offered half hr three times a day at weekends to give my husband a break,what they think he can do in half an hour I don't know. He also got one of those prescriptions for a treat of some kind but as he said he cannot relax if I have no one to sit with me! :-( What worries me most is he is only just holing this together,and I am worried sick that he could go down! He has had PTSD for 19years and he has been in and out of respite himself and I would never forgive myself if he got very ill again. :-(

They said they would call from7 to 11 and 12to 4 and again at tea time or if I needed it 7 to 9 to put me to bed. my appeal was I could be last on the early list and first on the lunch one and poss first on the night one,and if I am put to bed as they so delicately put it at 7 and my morning visit was say 10:30 I could not lay there all that time,and if I got up for the loo in the night I cannot get into bed again. It was sudgested I sit on my chair with a blanket round me till the next visit!

They also know I have therepy every day with hydro and physio and need to be taken by car with my fold up scooter and they need to stay to dress and undress me. I cannot get in a shower as ours is over the bath and they sudgested I had a word with the home my mother is in to see if the nurses there could help shower me at the home!

I also need to visit my aged mother who lives in the home because I can no longer care for her. ( I was my mother and my husbands main carer and never got any help and saved them thousands!

Thank you so much for your kind help I will keep you posted. Rainbow x x x


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