My Fiancée has fibrosing Alveolitis. I have gave up work to care for her. She is on 24/7 oxygen. What benefits should we claim

[Andy1966]

She has been put on transplant list.

[stilltruckin]

gov.uk/benefits-adviser

[cofdrop-UK]

Andy you might want to get in touch with an expert benefits adviser as it's a bit of a minefield to go it alone. Welfare Rights, CAB, DIAL or you can contact BLF - click the red balloon top right (unfortunately not weekend.) Sorry to hear about your fiancée and good luck.

love cx

[teaky-19]

you can claim esa also pip ex dla if you are caring for wife you want to claim for highest rate for both you can also claim housing benefit .if you are successful you will also be entitled severe disability .premiums that's benefits your fiancée claims you will be entitled to claim carers allowance it is also better for you to claim the housing benefits as esa is complicated that way hope this helps

[cofdrop-UK]

It would be your fiancée who would be applying, although you may be entitled to Carers Alllowance. Would defo advise expert help - you have enough to cope with and it will take the pressure off. cx

[longlungs]

Hi Andy1966 nice to meet you welcome to our friendly forum.Sounds like you have a lot on your plate,sorry to hear about your fiancee.Iagree with the others try and make an appointment with the CAB or ring the BLF on monday by clicking on red balloon in the corner of this page.It is wise to seek help as it can be a minefield for sure.By what you say I would think you are entitled to most that is available.I do hope your fiancee hears soon re a transplant ,you must be so worried the pair of you.Any problems just shout and between us all we will be able to help or point you in the right direction.Takecare and keepwell now Janexx

[Andy1966 in reply to longlungs]

Hi peeps, I joined this forum back in March, lots been happening up to now. I am caring for Natalie my partner, she has finally come out of hospital after 4 months in. In this time I have also had to do house move as well as looking after our two young boys. Natalie has been through hell since being in hospital, her consultant she WAS under has been no help to say the least. Back in March the decision to go through with Lung transplant's was made between Natalie and him, only to find out now that he has done nothing. She is now under a different consultant who has got the ball rolling, but whilst being in hospital and having all kinds of medication pumped into her especially steroids, she has put a lot of weight on as you can imagine. So 7months wasted by her old consultant, because she has been refused transplants because her BMI is too high. So now another journey to get her to the correct BMI she needs to be at. How do we achieve this when she is still on steroids but being weaned off, is on 24/7 oxygen and cannot possibly exercise, Andy 1966

[jenss in reply to Andy1966]

Dear Andy, I am so sorry to hear of your partner's problems. I do not know the answer to your question regarding the weight loss. All I can suggest is that you ring the BLF (number by clicking red balloon above) and discuss with the nurses. Also you may want to create a new post with your question so that more people can see it and give you advice. I wish you and Natalie (and of course your precious boys) all the very best. Take care, God blessxxx

[peege]

Hi Andy, I'm very sorry to hear of your fiancee's health. It must be so hard for you and the children too.

I'm wondering if you've called the BLF helpline yet. They have experts on the line for: lung health advice, benefits advice and emotional support.

Please do give them a call. They are marvellous. I believe it's the cost of a local call from a landline: 03000 030 555

You deserve and need all the support you can get. You're a good man.

I'm sorry I can't offer you any advice except to say I think the weight will slowly drop off as the steroids slowly decrease. Small meals little and often, cut out sugar and fatty foods. Things like raw carrots for snacks aren't expensive. Get the support of your GP practice too. Using high doses of steroid depletes bone density so plenty of skimmed milk. If you're that way inclined you could pick clean dandelion leaves to make tea from to help get rid of the retained water - really though you need some expert advice. PLEASE call the BLF.

Any exercise is better than none, even standing up from sitting, turning ankles in circles whilst sitting, from the chair some stretch exercises all done gently and slowly.

There is a course your partner is entitled to go on called pulmonary rehabilitation (PR for short). Get a referral from either the consultant, GP or his/her respiratory nurse.

I wish you all the very best of luck for the future - bet the children are pleased to have their mum home

edit: can you copy your recent reply and paste it in to a new post? That way more people will see it and you'll get loads and loads of support from people who've been in a similar boat.