Fibromyalgia Action UK
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Well adult care and social services let me down big time !! :D(

I haven't been on here for a while as I have been very ill. SS and adult care came to see us and as my OH and I were both waiting to go into hospital ,they were sorting out a care plan for us.

My OH had to go in yesterday and we told them this 2 weeks ago, "don't you worry about a thing ! we will make sure your wife is safe and cared for. " was there reply they even phoned to check what I needed and how things were well that was over a week ago now :-(

I was left with no one no help not even a phone call,and OH had to go into hospital for an op on his right arm and is now unable to use it untill after new year. He does everthing for me,and in agony he is still trying :-(

Why do people promise one thig and not follow it up I am so cross but I darn't phone them as I might make matters worse....or could they get worse?

Sorry to have gone on but I am in agony and waiting for an op myself which is urgent ,but they are making me wait 6 weeks great as if Fibro etc isn't enough. My Dr even told them it is urgent and they still won't be able to see me till 24th jan and that is just to asses what to be done. I also had to have surgical stockings measured and fitted 2 weeks ago and still not done......I know it is Christmas but that should not affect what you need doing should it ?

Anyway I hope everyone is well and able to enjoy the xmas festivities ;-)

Gentle hugs to you all x x x

Rainbow x x x

7 Replies

As I work for adult social care myself, I suggest you get onto them now. It maybe that they have been trying to source care but you should have had a call informing you of what's happening. If they are anything like us, we get 30 up to 70+ new referals each day.

You definitely need to phone if you need help with washing and dressing, etc

Hope you get it sorted.

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Thanks jom i just called the person who was sorting this because she never called back or did anything....and I told her that the Adult care nurse had called about two weeks ago,they knew my main carer was going into hospital and I would be alone. I can't walk get up myself or put my trousers etc on. Bla bla.....any way she said " Oh do you need some support now then."...I said " well yes but he is home now be it with one arm in a sling for a 10 days." All of which she and the others knew 4 weeks or more ago. I told her I just wrang to say it has not working no one came.

Just got a call now to say there is nothing flagged up on the system and no record of any phone call from Cares support or OT yet they all called us, ages ago.

Sorry to go on just so exasperated.

They are going to call tomorrow if they find anything out if they don't get back to me I am to have a happy christmas or as best I can!!! Just about says it all eh!!!

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Sadly communications between hospitals and teams can be sadly lacking and it infuriates us.

Call tomorrow and ask to speak to the duty social worker. Say you need assistance now and what assistance that is. I do not know where you live but I know with most areas they can get emergency care packages in place quickly. Without help you are at risk of hospitalisation. It might be an idea to write down or type it what help you need, even if he sorts meds out, include that. If you need any other advice let me know or message me. Am off out shortly but can answer on my return.

I have a care package as well as being a worker

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Hi Jom ,I did as you said and called the SS the lady said she did not think it was them but would check. Called back and said am I sure someone asked me all those questions. I told her a comunity nurse called and asked me the same questions I had already been asked before......She then went on to say there was no record on the computer about all this and to call in the morning.........

I was so fed up we are just about managing,my OH has now got a very swollen hand and it turned blue so he had to take a cab to the Dr to get it looked at!!

I called the woman back only to be told they are now closed till 27th dec,but you have a nice christmas......I said Yes right!!! how am I supposed to do that with no help!and NO family about.........I nearly told her not to bother after new year as we will have got through the worse...but I bit my tongue ;-(


hi jom , nice to here you can get help .being trying to get help for years now since had fibro in 1998, struggling getting over broken ankle which not getting anybetter ,ddd aswell ,spondiloties .and abad case of deppression , .Broke down in docs on friday on medication which not helping , she writing to mental help team i think or councling .god no what for , she mentioned i think to ring social care direct ,but could u advise me what they can offer me ,allso fed up with council they offerd a ground floo flat 6 weeks back and havnt renovateded it yet ,,so looks like cant move till next year ,so fed up and depressed .

sorry to go on , any advice ,

allso cant even get a grant for white goods or carpets for new flat .

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If you have issues with washing and dressing, you should be eligible for a social care assessment to look at help you need. If there is an urgent need like with rainbowdancer, they can look at putting in a temporary care package before assessment.

You can check under Fair Access to Care Eligibility Guidelines on web to see if you would be eligible but main thing is personal care.

It is means tested but if you are on benefits, if you have to pay anything at all, it will be a couple of pounds a week. Many on HB or CTB don't pay but I am not an expert in financial side.

I have help but I chose a direct payment, so that I can sort out my own care. I cannot get in the shower, bend down or wash my hair and dressing is a chore aswell as being left exhausted. The help I get enables me to lessen the exhaustion and get hair washed and showered. It then gives me half hour to rest before I have to take my daughter to school and go to work. As I have a minor I get help with preparing meals and help in the evening.

I also have social activities for me and my daughter as can't drive very far or in too much pain. I have an assistant for this, who is CRB checked and if I am having a bad day, she can take her out to different places. It has changed our lives as I no longer feel guilty that I cannot take her anywhere and if bad day, she is not here so I can rest.

Through personalisation you can choose the type of help you want as long as they are meeting your assessed needs.

Sorry but I am no expert in housing issues but can you no longer get community care grants for essential items like white goods? It might be worth speaking to CAB or a local advocacy service

Hope this has helped you and others get the help you may be eligible for. Even those who want to give your OH a break from some of your tasks.


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Hi all

Just want to say that although I really feel for you Rainbowdancer and Tinkerbel I am so pleased that there are people on this site who are so good at helping us and I feel thankful that there are people out there who give their time in helping us and they are just so good at giving.

Sorry not putting it right but with the Pain management course I went on, I found that there are a lot more people in chronic pain than I realised, and to come on this site I find there are so many people with so many chronic illnesses and so many people who are willing to give their time to help others is restoring my faith in human nature.

Thank you all

Kindest regards


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