Direct Payments and me!

Caring for someone with MS
1

Hi, I’ve been asked to do this thread specifically.

At the risk of boring anyone, here goes.

A lot of you will already know about Direct Payments, but some may not, or may be daunted by the subject of applying for them.

Here’s my story.

Almost 25 years ago now… chuffin eck!..I was a fit and healthy 40 year old. I was in the prime of my life, after losing around 7 stones in weight, having a boob lift, being promoted at work, passing my driving test and getting my own car. The kids were growing up, hubby was happy and all was well chez nous.

Five years later I began falling over, putting weight back on and feeling less energetic. I eventually saw my GP who sent me to see a neurologist.

Moving on from there… I took ill health retirement from work, my mobility worsened, spasms hit and bowel and bladder problems progressed too.

My hubby became my carer, seeing to my personal care, taking over all household tasks, as it was just too much for me to manage.

I was wrongly diagnosed with MS for 10 years. That’s why you find me still lurking around these boards!

Then I got the unproven diagnosis I have now. Idiopathic/hereditary spastic paraplegia…HSP.

So by now, hubby had been my sole carer for 11 years. His rheumatoid arthritis was really taking a hold on him and I knew things had to change.

So I found out about Direct Payments. I applied for an assessment. Hubby was not at all happy and said it was his job to look after me. But no, I felt guilty, a burden and responsible for his worsening health.

I had the assessment and was given 8 hours a week care. I employed a qualified carer who was highly recommended by a friend. That carer has been with me ever since. Some of you may recognise her as my Bev…in fact I’ve spoken so highly of her, that I’ve had several requests for a cloned version of the lovely Beverley.

I also set my sister and her friend on, just to see if they wanted a few hours work, after they’d retired from their regular jobs. They worked for me for 5 years!!!

So now I have 26 hours, plus 2 sleepovers a week , shared between Bev and sweet Jayne, from an agency.

What do they do?

They come in daily, do all my personal care, light housework, take me out once a week, plus go on short breaks with me.

What does all this do?

It gives hubby a well deserved break from me and I thoroughly enjoy my carers’ company and we have become friends.

I heartily recommend everyone to think about Direct Payments, if you find yourselves struggling under the weight of looking after each other.

Love pollsx

1 Like
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Direct payments: its a mixed bag. If you are on certain benefits, you will be able to claim them. First point of call is an assessment from social services. this can take AGES as all s.s dept are over loaded and under funded! So rock on, you see your named social worker and they grant you X amount of hours. In my case 6, which is not enough.

DP will only fund WHAT AGREED IN YOUR CARE PLAN. So for me - personal care: help in getting showered and dried and dressed. “we don’t fund domestic or socialisation…” So i employ a cleaner from my own funds.

I have an ongoing battle at the moment because in March, April and May they reckoned I needed tp contribute, but their figures were based on money I don’t have!! Cue filling in 47 page form and still haven’t heard back. Still if THEY want my money, they can chase me!

the irony? If you SELF FUND then those stipulations disappear. You can employ a carer or team of carers to do exactly what you need.

There is a postcode lottery with some LA’s allowing more leeway than others. i would say to Anon: you only get ANYWHERE if you shout a lot, phone up and pester them to death.

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Hello. I`ve never had to do any shouting or whatever to get my care started, increased or continued.

Each time I felt the need for more care, due to deterioration in both mine and my hubby`s health.

I got a different social worker each time and their recommendations were met.

Initially, there is a long waiting list, but there`s nowt we can do but wait.

pollsx