DS soon to have dyalsis/transplant,give up work or go of sick what are his options?

[ledkr]

Hi My ds is 25 and is heading towards starting dyalisis and hopefully haveingthey have some interesting a transplant. He works for a large chain of very cheap clothing stores and has done for years.They dont seem particularly sympathetic and he has to take holiday for his numerous hospital apps and they get really funny when he has any sick time (not often) We were wondering if when the time comes and he cannot work what his rights are with regards to sick time/pay.He is trying to decide whether to just give it up or keep it open and whether that is even an option. Anyone know anything about this.

Has he talked to his work about the Equality Act, Disability Discrimination, Reasonable Adjustment or Disability Adjustment Leave?

HR should have heard of all those and be worrying that they are violating their statutory duties .

If he cannot work, then unfortunatly they will probably let him go, and he'll have to go on ESA.
But the dialysis unit will have late appointments - I knew someone who did 8-11 at night so they could still work in the day

Do you know what sort of dialysis he is going to have?

There are two kinds, one called peritoneal dialysis which is every night overnight, and the other is renal dialysis which is 3 times a week for about 6 hours each time.

Both kinds make it difficult to work full time, and he should be entitled to sick leave according to his contract.

It can be a very long wait for a transplant and he may have to move to statutory sick pay, which isn't very much, once his sick pay entitlement at work runs out.

You really need to get some professional advice, it sounds as if his employers are not up to speed.

I am sure there must be a patient support group for dialysis/transplant patients. Maybe do some googling, or ask the renal team at his hospital for advice.

Does the department have a social worker or councillor he can talk to?
Doesnt CAB do benefits advice? Is there one near you?

Is he on the transplant list or working towards it?

Can't offer more concrete advice sorry

I gave up work completely. I was on incapacity benefit. I just couldn't work and live and do dialysis. Being ill was my job unfortunately It was all I could do. I was on haemodialysis and it was hard. I hope it makes him feel better though. I tried CAPD twice but my abdomen was too small but I wish i could have done it because i felt better from it instantly and it keeps your blood levels more stable

Thanks everyone,we are off to cab next week to see a benefits advisor.We are also going to look at his contract and contact hr.
He was keen to keep his job open to go back to.
He is going to try peritoneal first if he cant get a live donor first.

noddy Did you get d.l.a? and if so do you think he can get it now before he starts dyalisis.Im sure i dont need to tell you this but he feels pretty shitty most of the time and is on loads of meds which he pays for and frequent trips to hospital appointments resulting in unpaid time off work and expensive public transport to non local hospitals,the money would be handy.Is it worth filling out the mahooosive form??

OOOPS sorry also will he get some help with his rent? He can move back home but at 26 hes keen to remain independent which i cant blame him for,he rents privately.

It is worth filling out. I got it though because my heart is damaged too and no one knows if it is the result of all the renal problems over the years. First of all he needs to get a pre payment certificate for his meds. What is he on? He will definitely get benefits and because of his age and the fact it is dialysis it will be higher.He may get DLA He will need to fill out the forms describing the worst day. I had my first transplant without ever having had dialysis a live donor and at his age that would be great. Post transplant I went back quickly as I felt so well. You need to get advice re work. I am not sure what it entails as I never left work to dialyse I was already at home as I was so ill. What is his creatinine now?

If hes paying for lots of prescriptions whould he be better off buying a pre prepayment one. (DH has 25% kidney function at the mo so lurks with interest)

He has 8% function now so not great. He has the pre payment cert thanks,isnt it awfull that they dont get free prescriptions when people get it for thyroid?? I dont want him to come home and have to live in a tiny house with 2 noisy youngsters and get hardly any money cos hes with us,i think its better he lives in his flat and cna stay with us whenever he needs to.
Its all so scary now.his kidneys were damaged at birth so we always knew this day would come but when it does its still scary.I can hardly sleep with worry and his gf has just dumped him too! Hes not going anywhere apparently grrrr,all he needs.

Yeah the free prescriptions thing is all screwed up trouble is I don't think they know how to change it.

Free if pensioner yes even if a higher rate tax payer?

You pay if you have cystic fibrosis unless you have diabetes when everything is free

Have you tried google might be patients associations that can advise?

ledkr 8% is awful. I think he will get housing benefit. His life will change dramatically once he has a transplant. Even a small reduction in function makes you feel awful and i think the slow decline is so much harder than sudden as the sickness is never ending. A girlfriend like that is probably not the right sort of person to cope with the whole kidney thing He will meet someone else .I think go to the citizens advice and fill out and apply for everything. I personally never met anyone who kept working they all gave up eventually. Are there any potential donors?

Thanks for all your advice ive not gone i just had a hamster emergency this morning,back tomorrow as out later..

Is it worth reposting this on health?

Just a thought they may well not be looking on here

Hope hamster is OK

Good idea thanks. The hamster isnt so good had to have it put to sleep,i have a devastated bereft 10 yr old girl now