New - Looking for advice for my fiance

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Hi,

I'll try to keep this as short as possible, on Monday 17th my fiance had bloodwork done and got a call a few hours later to get to a hospital asap, all we were told is that it was kidney related.

Going forward a few days she was moved to MRI (Manchester Royal Infirmary) and we found out on the 19th that she had kidney failure, she then turned 24 the following day - not much happened due to the docs etc not wanting to lay too much on her at once especially with it being her birthday.

We've now found out her kidneys are at about 3% leaving her on dialysis + needing a transplant, she's not good with needles so has opted for PD as apposed to HD, still getting a lot of pain whilst having her dialysis at night but due to it being weekend there is barely any staff in to do something! Hopefully get some news tomorrow to find out if they can lower it now from 12 hour sessions.

Anyway onto the reason why I am posting here..

We would like to know what support is available for her, we are both on Universal Credit, she works at Mc Donalds on a zero hour contract (They've been good so far but honestly can't see them offering her a lot of shifts to accommodate her now being only able to work in the day, obviously not until she is feeling better / used to dialysis) I currently do not work.

What is she eligible to claim for and will she have to come off universal credit if she is eligible for something?

Am I now classed as a carer for her as I obviously live with her and will be assisting with her dialysis etc?

I am also eligible for PIP due to having Epilepsy but it's not something I've wanted to do as I prefer to work but would PIP clash with carers allowance (assuming I am eligible for that)?


I hope all of this has made some form of sense, it's all still very raw, we're young and still coming to terms with all this and just want to make sure bills can still be covered, we private rent currently and having to move at this time would just be the icing on the cake for what has been the worst few weeks of our lives.

Regards,

Ryan.
Hi, welcome to the forum. If you look at the top of the page, there is a red help and advice tab, click here and there's masses of information. Carers UK has a brilliant helpline they will give you the best possible advice.
Ryan hi - this is a very challenging situation for you both, and I hope you find the information you need on the website - but if not, do email the Carers UK team of experts directly -it's preferable apppaently to email rather than phone, as the line is often busy. Emails are replied to in a few days.

Also, the folk here on the forum know their way around the SS/benefits system, so should also be able to help (not me, alas)

I just wanted to wish you and your GF all the very, very best. I do very much hope that given your GF's youth, that she goes to the top of the transplant queue, and that within a relatively short space of time she will get her new kidney, and her new lease of life. At such a young age, do also remember that SUCH advances are being made in frontier medicine, and treatments such as stem cell medicine might, within a year or two, who knows, be able to 'heal; her dysfunctional kidneys by 'regrowing' the vital nephrons (kidney tubules that filter the blood) from 'inside' so to speak. Or even, who knows, grow an entire new kidney for her in the lab, ready for transplant.

The name of the game now is 'hanging on in there' with as best quality of life as can be, even if that currently requires dialysis, so that 'one day hopefuly quite soon' she will get her transplant and maybe later her more advanced 'personal medicine'.

She's luck yto have you 'on side' and I hope that as Team Ryan, you wil lbe both able to have as healthy as possible lives, despite your dual health problems.

Kind regards, Jenny
Thanks a lot to you both, I will take a look around the site and get an email typed up, hopefully someone can point me in the right direction :)

The doctors did say she would be a priority due to her age and we have a lot of friends and family wanting to be tested so I am hoping we can find a match without the list if possible.

Regards
Can I suggest that you look at the kidney.org website, lots of information there, about kidney problems and benefit issues. They also have a helpline.
Hi Ryan,
just like to say good luck for your partner and welcome to the forum. The benefits system and especially the overlapping Rules are very unfair, for myself I was hoping for a change in government that were going to improve Carers Allowance and maybe look again at the strict rules but this didn't happen. Anyway my wife also has epilepsy and this is uncontrolled she also gets PIP and ESA not sure whether your partner would be entitled? but if she's been in working and paying National Insurance then she could be able to claim ESA.
Good luck Ryan, you doing a brilliant job standing by and supporting your partner. Carers Allowance info here

https://www.citizensadvice.org.uk/benef ... allowance/
still go through the process of claiming and see what happens.

Paul
Ryan_1707 wrote:Thanks a lot to you both, I will take a look around the site and get an email typed up, hopefully someone can point me in the right direction :)

The doctors did say she would be a priority due to her age and we have a lot of friends and family wanting to be tested so I am hoping we can find a match without the list if possible.

Regards
Need expert advice? You can talk to the Carers UK Adviceline five days a week, no matter where you are in the UK or how complex your query is. We do benefits checks and advise on financial and practical matters related to caring.

Freephone: 0808 808 7777
email: advice@carersuk.org
Open Monday to Friday, 10am to 4pm

The Carers UK Adviceline also includes a listening service, there for you to talk through your caring situation with a trained volunteer who understands what you are going through. Available Mondays and Tuesdays, from 9am to 7pm.
If you can’t get through on the phones (lines are often oversubscribed) then send them an email, they’ll usually get back to you within 3-5 working days.