Carers start Monday......

and I’m nervous as hell! I’m not at all sure I want this. I don’t know how it’s going to work, or even if it’s going to work! One carer to help me in and out of the shower and dressing in the morning, and again in the evening to help me get ready for bed. But not put me to bed. I don’t want to be in bed by 8pm!

After my earlier post having a moan about the lack of support I rang the MS nurse, who told me to ring social services myself, she was so out of touch she gave me the wrong tel no!

I got through after several attempts and a telephone assessment was carried out. Then I had a call from a social worker giving me a bit more information, but I didn’t properly take it in. I think he said I’d be provided with the details, but I’m not absolutely sure. I do remember him saying it would be means tested and I’d probably have to pay. This begs the question if I’m paying would I be better sourcing it myself? Anyway, I got another call today saying there is an agency able to start on Monday. I’m guessing I won’t get the same person every day.

I thought someone would’ve visited to assess me and my home. I’ve not yet been means tested either.

I also rang the community OT who visited last month to see if I could maybe get a wheel in shower seat or maybe an aid to standing. Apparently the answer is no. I’ve been discharged by them, so I would need a new referral, and as what I’m asking for is not for “rehab” they won’t supply it. I’ve no idea why the OT left me her number when she must have known she was discharging me, and could offer me nothing were I to ring. Looks like I’ll have to buy them myself.

I’m beginning to wish I’d not embarked upon this, but my husband, who is older than me and with health problems of his own can’t go on doing it all.

Got someone coming next week to demonstrate and advise on adjustable bed and riser recliner chairs.

This disability malarkey is expensive!

Hello Flower pot I’m so glad that you’ve got some help.i know it’s scary it’s so hard adjusting to having people come in your house . When I first got ill we had a lovely social worker who got us something called “re-enable” It involved carers coming everyday for 6 weeks and after that I was assessed and given Direct payments. It was hard at first having strangers. For me it was help with the housework and appointments ect, Lee helped with any physical needs . I was sad and proud and felt uneasy but I grew to appreciate the help . Being a mum with youngish children I couldn’t afford to go under. It takes a bit to get your mind around it , I bonded with some more than others but I have to say it helped tremendously. As I said now I have direct payments and that is money given specifically for my care needs…different from pips . I can pick my own carers at the moment I have my sister she comes to stay once a fortnight and inbetween I have Christine ,she’s a good friend I’ve known for years and I also pay an agency to come every Monday . I hope this goes well for you. Michelle and Frazer xx

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Hi Flowerpot

So glad you have some help starting next week, and I appreciate it will take a bit of getting used to, but in the long term am sure you will find it to be a good move for both you and your husband.

Take care

Pam x

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i refused carers for 6 months when i really needed them. fine line between independence and stupidity! for me i mean!

they started off with 7 hours weekly and now its 8. i am well aware i could get more-social worker has made that clear but when i am really poorly-like recently-whats the point in them looking at me when i am not fit to go out? today i was out-first in several weeks as corner has been turned yet again.

yes its an intrusion but if its needed then its needed i am sorry to say. i have had the same company and several different carers over the past 5 years. i couldnt face coping with the paperwork for me to employ them.

will be thinking of you both-it wont be easy but u will reap the benefits-i dont mean financial!

ellie x

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Thanks Ellie. I’m going with the agency carers, like you I don’t want the hassle of employing them myself.

I thought someone would’ve visited to assess me, rather than just a telephone assessment.

My husband has managed alone, but now I’m thinking that maybe a sole carer won’t do what he did by himself.

Time will tell.

Hi Flowerpot,

I felt very much like you in the beginning about having carers and I was scared stiff, but now after having carers for four years I love them all. I am double handed and I have to be hoisted out of bed in the morning after being washed and dressed on the bed and at night time, 6 PM, I am put to bed which I love because it means I can relax in bed and watch television. The carers give me a life which I didn’t have before and I am sure that having the carers in which enrich your too.

It is daunting just go with it and I promise you will benefit from it.

All the best. Jane

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It feels wierd at first, a complete stranger seeing you naked, but the gals are there are there to help and all of mine have been fabulous. For me, its the difference between having a wet back and feet and being properly dressed. As a side benefit, I find myself talking their head off.

i’m with a partner now, but some weeks, they’d be the only WOMAN I spoke to. Sometimes you just need to chat to a female!

As for paying if social services are arranging the agency, it sounds like you are getting direct payments. HOWEVER, don’t take it as read. Ask the carers for their office number - tell them no one has explained who is paying abd they will at least have the phone numbers for you to call.

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No, I’m not getting direct payments. I do get PIP. When the social worker rang after the telephone assessment to tell me I could have help, he said it would be means tested and I’d have to make a contribution. I’m still waiting for that. I had hoped for a visit from social services.

I hope it all goes well today flowerpot. My two agency workers are with me this morning and I’m always pleased with what they accomplish. I felt nervous at first but now I’m used to them and we can even have a bit of a laugh. Michelle and Frazer xx

Hope it’s all gone well this morning Flowerpot.

Pam x

Hi hon, before I saw this thread, I’d responded to your first. Might be worth reading because I had similar problems. I was offered a Wet room conversion in my existing Shower room. When means testing was mentioned I knew we’d fail so I refused means testing & their cheapest contractors. My other post explains a bit more.

We’re paying Bathstore to do the job after seeing their work. They’ll remove existing shower, cupboards, tiles & loo. Then fit a new Rain shower with another, separate head, replace ceiling & wall tiles. Do all plumbing, cleaning etc. It’ll add value to our bungalow & not affect our other bathroom. But if we had limited resources, Social Services would do it their way. A lot cheaper but effective enough.

Chrissie x

We ended up doing our disabled bathroom ourselves because the means test meant the council expected a hefty contribution. I still can’t understand the figures they were asking for and how they’d worked it out. We got a good friend to help and although it cost a bit it was nothing like what the council were asking for as a contribution. You can also get vat back , but you have to make the bathroom suppliers aware that you are asking for the vat back before you pay for the goods. It saved us quite a bit of money. Michelle and Frazer xx

Well, thanks everyone for your input. Firstly so far as adaptations go, we’ve had the bathroom converted to a wetroom, at considerable expense, but at least it looks nice too. We’ve paid for alterations to the front door to give me ramped access, again at considerable expense, but if you have to have a ramp at your front door at least that too looks ok (as far as it can). We also spent quite a bit having the fitted furniture in the bedroom replaced, along with moving a radiator so that we can get a wheelchair all the way round the bed. Then having the level of the conservatory floor raised and new doors (there was a step down into it) We’re currently waiting delivery of riser recliner chairs and adjustable bed. Trying to future proof the place. Then there’s been wheelchairs, attendant push - lighter and easier for hubby to lift in and out of the car, a self propel for when I might need to move myself around when we’re out, and the little power chair I use to get around at home. Hence no savings. This disability malarkey is expensive!

Carers - we’ll they’ve been coming for two weeks now. I’ve given up the evening visit. I don’t need putting to bed and the arrival times were a bit erratic. Morning visits to help me up and shower and dress are going well. I’ve seen one lady seven times now, and another two twice each. The rest have been single visits. It’s easier when they’ve been before, but they’ve all been lovely and we’ve had some interesting chats. So all in all it’s going well.

Someone from social Services is coming on Tuesday. We’ll see what that brings.

Thanks to all of you who’ve taken the time and trouble to read this and to advise and comment.

Hope things are going well for you all.

Hi Flowerpot,

i am so pleased everything is going well with the carers, now you’ve made this huge step it’ll get even more easier. My goodness you have been busy getting you’re home in place for the future. Are you not entitled to any financial benefit? Maybe, social services will let you know when they make their visit.

Maybe, social services will let you know when they make their visit.

All the best Jane :slight_smile:

wow even with care package you should have had an assessment. I just had another one it lasted 2 hours, and before then I had to have a financial assessment and with my pension and PIP i still have to pay 42.00 A WEEK for my care. I am going direct payments as i prefer to have my own person in the form of a personal assistant. I was getting direct payments for five years until i got money left me from my mum, which tipped me over the edge of savings, and i had to pay for it myself, so i sadly had to let my other care worker go i couldnt afford it. Now i am below and have had a girl with me a year for a few years she is brilliant, but had to have another financial assessment and like i said still have to pay 42.00 a week.

they instiage a new social service assessment as i have to pay who came and was here for ages. she wrote 12 pages lol…it went to their board on thursday so i will hear sometime this week if i can have care via the government or not and how many hours.

If you havent had a financial assessment i am surprised as my friend didnt and then suddenly got a bill for 2,000 she had to pay for herself.

I would check because they hate giving you money if you can afford it. I was honest and told them about my mums money the amount you are allowed in savings is 23,250, but it also depends on how much money is coming in. I dont think my pension and PIP is a massive amount but still have to pay because i got ENHANCED PIP for my care, i have to use this for my care regardless.

could luck with your social worker. x

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I just want you to know how Much I get you. I have found through my Personal experience, That Most doctors are in “it” for the buck. People NEED to Hear our Flipping’ VOICE’S! :frowning:

Still waiting for financial assessment. I’m afraid they’ll neglect to do it for months then hit me with a big bill. I’m happy to contribute, I do get PIP which is what it’s for, but I’d like to know sooner rather than later how much!

The social worker I saw on Thursday seemed clueless as to when it might be or who I should contact to sort it!

The Social Care assessment system is utterly bizarre. I remember trying to find out exactly how they do it for my mother-in-law years ago. It’s secret it seems. The only thing that is set in stone is the capital cut off. If you have £23,500, you have to pay for all your care. But that is £23,500 each, not as an aggregate of your and your partners savings. Equally, when they look at your income, it’s based on your income only. But as for the calculation they use to means test you, that is something that I have looked all over for and can’t find. So, I think each local authority works out their own. And part of it depends on your level of ’need’ as well as your income and savings.

I think you should push them Eve, try to get an assessment sorted out. Otherwise you just have no idea what it could be costing you. Unless of course, it’s all paid for up until they do the assessment!! In which case, let them drag their feet.

I do hope it’s working out well for you, quite apart from the finances of it. I hope it’s taking the pressure off you and making you feel better in yourself.


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I was told you start paying from the week after the financial assessment. As it turned out I improved a bit and we decided that, at the moment, we can manage without carers so didn’t have the assessment done.


In which case, let them take all the time in the world!!