where do you go for help as a young(ish) brittle asthmatic

Hi all,

Ive been fairly ill over the past year admitted to hospital on average for a week every month with high doses of steroids and antibiotics in between. Im 24 yrs old and a stay at home mum (well at least meant to be) but am failing at almost everything, my partners a self employed gardener and everytime I get ill he cant work as he has to look after me and the kids and being self employed theirs no sick pay when he doesnt work we dont have any money coming in.

Everywhere I try to get help from is like hitting my head against a brick wall as I am not over 65, I dont have copd and all I hear is that because asthma is variable im unlikely to get help at all.

Ive been tuned down for DLA more times than I care to remember as apparently even as a brittle asthmatic who can not walk anywhere without medication I only have some with me for 'comfort' not because when you cant breath it would be impossible to get help?!

I apologize for such a big moan but its gutting to watch all these people claiming benefits and getting help to take their kids out etc who you'll see jogging up the road of an evening when for years now I dont even attempt the stairs in my house apart from to go to bed as it just takes so much out me.

Where the hell do I go and what can i do???

Thanks

7 Replies

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  • Hi Poorlykat

    I am sorry to read you are feeling so poorly and having such a rubbish time!

    Do you see a consultant for help with your brittle asthma? If not i would suggest asking your GP to refer you - i am just wondering if more can be done medically to help you.

    It may also be useful to know but you can contact social services and ask them for a homecare assessment and a carers assessment for your husband, this may help with benefits also.

    Getting in touch with social services dosen't mean you are admitting you can't cope, but they are there to help and support peopple who are ill or disabled.

    You mention you have been turned down for DLA, when did you last apply and did you have help from an advice agency such as the CAB?

    If you would like to give us a call on the helpline 03000 030 555 we can help you with benefits and support to try to make things easier for you.

    best Wishes

    Jo

  • Hi Jo

    Thanks for your reply, I see an asthma specialist at my local hosp, an asthma nurse and a chest physio for pulmonary rehab. There has been talks about going up to London to see more specialists but as with everything these things take time.

    I have contacted social services who were as helpful as they could be- unfortunately due to being in a new build house all the adaptations they could of done to help they cant do as the walls are just plasterboard, and as we rent from a local housing association moving is probably going to take years.

    I must admit it felt alot like admitting I cant cope which to be truthful I probably cant, but its never a nice thing to come face to face with especially at this age.

    It was in December after a trip to ITU I was last turned down I didnt get any help with the forms which I probably should have done but its such a fine balancing act as I need my partner with me if I go out but it means him having to take more time of work leaving us living on working tax credit.

    Hopefully my occupational therapist has said she would look into someone that may be able to come and help with the form filling and at least that may take away part of the financial worry.

    Thankyou for the number I will call once this throat infection clears up as im not that understandable at the minute

    Thanks again

  • To Poorlykat, first of all I really do feel for you, I am too brittle and have been since I was 18, I do receive benefits but not with out the usual fight. Like the reply above it helps if you have a team of people like consultants fighting your corner to get things going in the right direction. Also if you have not previously done so, when turned down appeal I had too, and won though in the end. If you want a more private chat, feel free to message me and I do what ever I can to help. Take care of yourself xxxxx Another poorly Kat

  • I see so many medical professionals unfortunately most of the time it doesnt feel like they can really be bothered to fight my corner! Its probably partly my own fault as I do down play alot.

    I know I should appeal but it just makes you feel so down when someone thinks your just lying to scrounge some money and to be truthful the thought of standing in front of a real person and simply explaining all the things that are hard to do fills me with absolute dread because I dont do emotional very well and Im not very good at asking for help when I need it so between these things its a terrifying thought!

    Thanks so much for your offer its really sweet, nice to know there is others out there that have got somewhere with the system.

    All the best with keeping well, chat soon x

  • Poorly Kat please don't feel like you are scrounging, you have a real health problem. Has for being referred it really doesn't need to take long, all that needs to happen is either your consultant or GP writes a referral letter to the specialist hospital. The wait is around 3 months, I have been with the Brompton on and off 7 years. Nottingham, and Birmingham also have specialist centres. If you don't ask you don't get, scream and jump and yell what ever it takes. You don't need to live like this. Local councils have welfare advisers who can help with form filling.

  • Hi poorlykat, I also have brittle asthma and am under the care of the specialist unit in Birmingham. I'm one of the very few people who have been awarded DLA on my first application (mobility component only, turned down for care but I wasn't expecting to be awarded that). My respiratory nurse specialist wrote a report for me, and I think this is probably the reason I didn't get turned down; I just wondered if you'd had any supporting statements with your application? Or if this is something you could look into?

    If you ever need someone to rant/vent/moan/chat to, then feel free to message me :)

    Dawn x

  • Thanks Dawn, I didnt put in any supporting statements but I think Im just going to get everyone I see to write something and then maybe I might get somewhere.

    Thanks again hun, Take care

    Kat

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