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New to the forums - Carers UK Forum

New to the forums

Tell us a bit about yourself here.
My name is Dawn. Me and my partner are fulltime carers for his severly disabled nephew.
My partner, Barry. He has cared for David (his nephew) for almost 30 years. He took on the role after his father died since he was his carer back then and since then he has always lived with my partner. My partner is the paid carer (for what it's worth lol) and I am just the secondary carer have been for almost 13 years now. It's so frustrating that I don't get any NI paid even though my partner claims income support for me.
It takes two to care for David as he has a huge list of health problems. He is wheelchair bound, Epileptic, has curvature of the spine, doubly incontinent, Cerebral palsy, displaced hip, Dysphagia and the list goes on......
My partner Barry is up most nights with David, either it's for a seizure, to change his bedding or something else, so Barry is usually knackered during the day and that's where I come in.
Keeping house, getting all the bedding laundered, cleaning the bed, and all the other day to day things he would struggle with if I wasn't here in the day to do these things for him.
David goes to day services 3 days a week but most times is sent home usually as they fail to spot he has had a small seizure or Myoclonic jerk and it's made him open his bowels, but they insist its diarrhea and make him stay home for 48 hrs (they have no clue)
So what I am trying to work out is if my partner claims income support for me, are either of us allowed a part time job? like under 16 hours? if anyone knows I would be so grateful, as I'd like to have a small part time job, just enough to pay £20 a Month towards my NI since I have had no contributions now for the last 13 years and I'm now 34.
Thank you for reading.
Dawn X
Hi Dawn,
I can't help with your question I'm afraid but I just wanted to say welcome, this is a great place to come.
Take care
Hi Dawn,

Welcome to the forum.

David does sound like he needs a lot of care. You and your partner must love him very much to provide the care you do.

The helpline is best placed to advise on benefits etc. I suggest you email them and request a call back, as they are always so busy!

Scally posts regularly on the forum and knows a lot about how to earn and still receive care allowance, however this relates to the main carer and not the carer's partner. Worth taking a look at his posts. Try using the search function and if no luck, I'll post some links later.

Does David have a community nurse, incontinence nurse or an epilepsy nurse? If sounds like the day centre needs some epilepsy and bowel training and they would be best placed to provide it. It's not acceptable that they keep sending him home.

I juggle working and caring and at my special school, children have to have loose pooh twice before it is considered possibly diarrhoea, we always have to ascertain whether they have been given laxatives or the loose pooh is the result of current medication and only after that has been ruled out as the cause, are they then sent home.

Welcome on board, and I am already so impressed by your story. I just wish that your caring was properly rewarded by this cheapskate society we live in.

I'm afraid that the Income support employment situation is very much more rigid and bleak than the Carers Allowance scenario. Carers allowance isn't means tested as such, whilst Income support certainly is. Basically it isn't worth getting a low-paid p/t job on IS because it just gets taken off you. If you can somehow find the time for full time work, that is always better, but from what you have said, I doubt you can.
I'm really concerned for both of you, no chance whatsoever of a life of your own? Has anyone mentioned "NHS Continuing Healthcare" to you? Google this, look at the checklist, and consider asking for an assessment. Have Social Services done a needs assessment for your nephew? Carers Assessments for you. There might be an alternative for both of you. Your nephew's needs are very high, and an assessment should mean a package of care for him. This can either be provided to you, or he could receive Direct Payments to pay someone to care for him, maybe you or your partner. You also need to have time off, together, to enjoy yourselves, knowing he is in safe hands. It is possible to have NI credits even when you are not receiving CA. CUK has a dedicated helpline, they would be able to give you more information.
We both get carers assessment's and what not, and we can get direct payments for a stranger to care for him but we have that trust issue with letting someone else come in since they would have to be fully trained in his food and drink requirements he requires and what not, and he doesn't take well to strangers and you hear sooo many horror stories it's worrying.
I hear under exceptional circumstances someone in the same household can be accepted for it, but I have been turned down, they said they I can't prove I'm doing what I am supposed to be being paid for. Hellooooo I'm doing it anyway for free lol it's so maddening :angry:
I think you should go back to the people dealing with Direct Payments, if necessary make a "formal complaint" by letter to the Director of SSD. If they have accepted that the work needs doing, and no one else is doing it outside the family, then it is surely obvious that you are doing the work? There are horror stories, but many good people as well. Why not try an agency to start with, one which can guarantee you will have the same person. Then they can work alongside you, doing the drudgery things like dealing with the dirty laundry, for example, help clean, putting away dishes etc., cleaning etc. This would initially build up a relationship, and once trust is established, you could then consider having at least some time together. Do you have a dishwasher and a washer/dryer or tumble dryer? Absolute essentials in my eyes.
Caring for David doesn't put us out and we still do things together, obviously we always have to work around him but yeah.
We get one holiday a year we usually go camping or something.
My big frustration is having no NI paid, and yeah the direct payments situation annoys me.
Everything is so much hassle and hard work and we have enough of that being carers never mind fighting out own rights etc.
We will likely just carry on as we are.
My partner is 56, Dave is 49, my partner and I'm 35 this year, so yeah my frustration was basically thinking of my future with state pensions etc it's a bit worrying sometimes.
Sounds horrible but looking after David is out income? if that sounds right and not mean and it bothers me if that was to change later down the line.
We have been together 13 years and we are solid in our relationship and as a unit and caring for David, we're very happy in that role and we aren't looking to get in help to take any strain from us.
Just the income side of things was trying to find out if I can earn a small wage to make up for 13 years lost NI.
Thank you all for responding, it has been lovely to read and know people care x
Google "carers credits". It will take you to the government site which appears to cover your situation.

I googled the carers credits and rang them for a form and the man on the phone postivly
said I would qualify, I do hope so this would be a huge weight off my shoulders.
Could get back dated too.
What gets me is why does no one tell us these things? imagine how many have or are missing this?
Thank you so much for all the help, if I hadn't of asked here I'd still be In the same boat.
Ever so thankful :D