DLA turned us down for a 2nd time

My lad is 4 years old and he's got rumatoid arthritis. He struggles walking most days some days are better than others the local council gave us a blue badge. Applied for DLA they turned us down for a 2nd time. Can we get DLA or are we waiting our time. He's on the medicene called methstrixate in injection form. Just need to know am i wasting my time applying for DLA. But if you could see how it's affected my son what he can do and what he can't do now.

Thanks Adrian

22 Replies

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  • Hi- I am so sorry to hear that your 4-year-old is so poorly. I don't get DLA or PIP but surely you can get something? Have you tried citizens advice? Maybe they can help...or ring one of our lovely people on the NRAS helpline on here?

  • Thanks for your reply it is much appreciated i will ring them up

  • You're welcome ☺My son was diagnosed with a Hepatoblastoma (liver cancer) at the age of 13 months and i had a blue badge to help with parking near Gt.Ormond St etc. I remember getting a payment carers support (or something similar) but that was 20 years ago! Citizens advise and people in the hospitals were very helpful at the time. I seem to remember that there were a lot of groups of parents who had advise for other cancers and not what my son had as it was so rare. Also there are charities which offer respite care and holidays etc for poorly children: Wishing on a Star (or something similar) was one. As my son was only a baby, I didn't ask for their support but a lot of parents who I met at the hospitals did.

  • Thank you for all your advise.

  • Hi,

    There are still support groups that help you fill in the paperwork for sick children,as my cousins daughter was born with cancer(another rare form,but we obviously didn't know at the time) only 5 yrs ago,and she spent the best part of her first 4 months in Gt ormond st having chemo and radiotherapy along with plenty of other treatments at such a young age. My cousin is a single parent,and being from Hastings had no direct family support around her.... luckily as we lived nearer and worked in the city,a couple of us would go up every day/evening to go through things with her,as she just found it so overwhelming. I think the woman that helped her worked for a children's cancer charity,so I guess that if you do as suggested and ring the NRAS,they should be able to advise exactly what grants you'll be entitled to or not,and the best way to apply for them.

    I'm so sorry that your young son is suffering so badly,as I can only imagine how heartbreaking it must be as his father to watch him go through it,but fingers crossed you get all the help you need to get what you should definitely be entitled to - failing that,have you tried the local mp? I know most get a bad press,but there are some good ones around,and surely that couldn't harm your case?

    Wishing you all the best xx

  • Thanks for all your help it's very much appreciated.

  • No worries,really hope you get things sorted xx

  • in my previous life I used to help parents with the DLA forms. I know the whole system has changed, but the vital thing then was to emphasise the difference between your son's needs and those of a 'normal' child his age. The assessors can too easily argue that any 4 year old would need constant care. Perhaps the NRAS helpline or a specialist nurse could help.

    So sorry to hear that your little lad has to go through this illness. Hopefully research will progress and new treatments found,

  • Thanks for the advice it helps a lot it is much appreciated. Thanks

  • I agree with above. At 4 they might say he can't do the dressing himself questions etc as he maybe still get parental support.

    Some ideas would be to talk to citizens advice or the Nras Helpline. I would guess you might get help with carers allowance or even housing allowance or benefit for having a child with disability or long term health condition.

    The system is now called PIP and is different now to dla.

    I think you could apply to your local council for a blue badge which might be helpful. You will need doctors support and he will probably be called for an assessment of his Mobility. The criteria is now very strict and mainly for those with severe Mobility problems.

    The other thing i could suggest is having a word with the school nurse. Its good she undertstands your problems in case of sick days needed and shr will support you with any help you will need. Dont be scared of these people they are exceptionally helpful. The same for Social workers . They get an uneccessary bad press but mine were amazing when my son had ME at the age of 12 supporting us all the way through doctors and assessments and with care and money.

    Good luck. Don't be scared to reach out to the professionals for help. It can be a long road ahead without them I found xxx

  • As a social worker, I thank you for that positive

    Comment - very rarely do we come

    Across them!

  • You save lifes !

  • Thanks for your help it's is very helpful to us . Thanks

  • Hi Adrian..

    Don't give up! If you have not done this already get a letter from his consultant, also G.P Nursery anyone in a professional area, whomever is will to support you and your son!

    I know how draning this is but don't give up! Keep appealing and with evidence, that indicates how R.A effects him.

    Good luck and keep going, your son is in pain daily. OMG, many adults struggle with the pain of R.A.

    How is this normal, and why has this been seen as OK for a baby to cope with R.A. Sadly he is not the same as other children! A day in his life is totally different.

    Good luck, You will be in my thoughts and prayers. X

    .

  • I echo all the responses you've received, though to clarify you wouldn't claim for PIP as has been suggested, that's a benefit for those aged between 16 & 64, it's DLA you'll need to persevere with I'm afraid. Don't give up, there's help you can receive & though it's PIP I receive I know it's not easy.

    My dealings have been PIP related so I'm not too clued up on DLA but I've a feeling you've to wait 6 months to reapply if you've beed refused, best to check that though. Anyway I would recommend you gather as much information as you can regarding your son's difficulties to help your case so that's from each Specialist, GP, Physiotherapist, anyone he sees relating to his RD. I'd contact your local Welfare Rights Officer, your Town Hall should be able to give you a name & contact number. They'll help you complete the forms, they know these forms inside out & what the DWP need to know. They can also advise on any other benefits, Blue Badge, Carers Allowance & such. In the meantime this link may be worth a read, see if there's something you've not considered child-disability.co.uk/Bene...

    I really hope you receive what he needs Adrian. Poor mite, as adults with RD (Rheumatoid Disease) we know it can be blinkin difficult & painful until controlled & as someone also injecting methotrexate I can't imagine the 4 year old me having to do it or have it done to me, you must have a very brave boy.

    Keep in touch, we may be able to help with tips & more info to help both him & you as parents caring for him.

  • Just thinking about your little one enduring this condition Adrian makes me weep. Such bad luck but with your love and support and understanding he can still have a really good life, compared to 30 years ago when so few drugs actually worked as well as today's. It makes me so angry that you have to fight to get the help he needs. I'm sure the NRAS helpline will know exactly what you could do, plus GP, your social worker if you have one and school - all the people your son comes into contact with. Good luck with it all - and tell your son he's magnificent every day.

  • Thanks for your comments it's nice to think people are out their willing to help you and if they can't just giving you support. Thanks

  • Hello Adrian, I don't know anything about helping u solve your medical insurance trouble. I just wanted to say hi & to send you my best. I hope your little boy feels better very soon. I'm sure u will find all the help u need. Researching it is half the battle. Your son is very lucky to have such a wonderful caring father. Keep us posted as there are so many wonderful people on this forum who can guide u through it all.🌻

  • Hiya RG. Just so you're aware DLA is a benefit (Disability Living Allowance). I know it must be bewildering with all the acronyms, we'd be the same on a US based site! 😳😧

  • Oh. Thank you. Yes I I guess there are different things in different areas. 🌻

  • Thank you for your reply it's helps to think people are out their thinking of you in the situation were in at this time.

    Thanks

  • Your welcome. This forum is full of beautiful people that want to help. They have so much to offer too. Best forum out there.🌻

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