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DLA have stopped my payments

andrea72andrea72 Posts: 2
edited 16. Apr 2016, 13:34 in Living with Arthritis archive
Hi my name is Andrea, my daughter was diagnosed with juvenile arthritis at 21 months she is now 7 years old, she has it in 13 of her joints . we have had DLA high rate the last 2 years which was up for renewal last month. We were refused any DLA which i appealed against then was reawarded the middle rate for 2 years which was great as this helps towards Rubys activities and hospital parking as a single parent this helped us alot. Then after the first month i had a letter to say we are no longer entitled to DLA as in the consultants letters he has used the word "little evidence" which has gone against us even though she is no different from 2years ago same medication, Methrotrexate 15mg and Enbrel 12.5mg weekly and as people no who have experience with juvenile arthritis how unpredictable it can be, one day they can be fine the next they could be have a flare up. Any help or advice would be very grateful. Thank you.

Comments

  • moderatormoderator Posts: 4,095 mod
    edited 30. Nov -1, 00:00
    Hi,welcome to the forum
    I have no experience of that,I'm sure there are many on here who can help.When they make decisions (and they are often wrong!) I've asked the CAB for help,they are usually good.
    ModAl
  • dreamdaisydreamdaisy Posts: 31,562 ✭✭✭
    edited 30. Nov -1, 00:00
    How utterly ridiculous. 'Little evidence' of what, exactly? If her condition is being controlled that doesn't mean it's cleared off, does it? I think you may have a fight on your hands but it's one that's worth fighting. We normally suggest that people who are experiencing difficulties with the benefits system contact the CAB for advice and help and that's all I can think of.

    If you do challenge this rest assured you will have support on here. I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • migmig Posts: 7,136
    edited 30. Nov -1, 00:00
    Hear hear DD ,good luck if you decide to fight the decision. Mig
  • bubblesbubbles Posts: 6,508
    edited 30. Nov -1, 00:00
    That is terrible Andrea - I feel for you, honestly, the DLA ought to be ashamed of themselves.
    DD is right, you need to fight this one and keep on fighting. As this is a recent decision, perhaps ask for a formal reconsideration of their decision, pointing out exactly where they are wrong, on so many levels. What evidence do they want? Someone crawling in on their hands and knees most likely.
    Oh it makes me so mad. I have had to fight and fight.

    Ask your GP and Consultant to write another letter in support of your request, take copies of everything and take it back to them.

    It seems ok to send billions abroad, while taking money from those who really need it back home.

    You can always call the help line too, oh, get your MP involved as well, they can really give some clout. Keep us posted, please and take care XX Bubbles
    XX Aidan (still known as Bubbles).
  • bubbadogbubbadog Posts: 5,852
    edited 30. Nov -1, 00:00
    I agree with the others, you have to keep fighting to get this over turned. Get in touch with the C.A.B and get in touch with your G.P do you have a good relationship with them? If so see if they can help with sending them a letter with all the information of your daughters Arthritis and speak to your Consultants secretary and tell her what has happened and that you need for the consultant to redo another letter regarding your daughters Arthritis and in support of her getting given DLA. It is a hard slog I know as I've had to fight my decision with them a few years ago as they took my DLA off me and now I have it for life. But it will be all thrown in the air again soon due to change over to PIP! No one knows what the future will hold with all these government changes!! :roll:
  • moderatormoderator Posts: 4,095 mod
    edited 30. Nov -1, 00:00
    Hi Andrea
    so sorry to hear your news, it is awful to be put under so much pressure when you are just trying to do the best you can for your daughter. Sadly there seems to be little understanding of arthritis. If you would like to persue this further through your CAB here is a link for you to find out where your local branch is and how they can help
    https://www.citizensadvice.org.uk/about-us/how-we-provide-advice/advice/
    You can also phone our helpline free on 0808 800 4050
    Best Wishes
    Moderator Sharon
  • barbara12barbara12 Posts: 20,659
    edited 30. Nov -1, 00:00
    Oh Andera this is awful, and there is no thought has to how this effects you all...please get cab on your side and appeal has the others have said ..and yes we are all behind you
    Love
    Barbara
  • SloshSlosh Posts: 3,194
    edited 30. Nov -1, 00:00
    I have sometimes had to fill in forms for parents applying for DLA as a SENCO, as I was sometimes askec to do this as a professional who knew the child well, and I have also been involved in what was the "Statementing" process, again as a professional.

    I was in the past asked to do this for a junior aged pupil with quite severe JIA in a lot of joints ( legs, arms, hands)and who was on injections at home (under GOSH). I obviously not query the diagnosis and we had put things in place at school that were recommended but when it came to completing the forms the parent was not happy as I had to fill in based on what we saw in school, as I explained it wasn't that I didn't believe the parents about problems at home but in school their child took a full part in all school activities including sport, and also did an after school sports club, went up and down stairs to access classrooms, got changed independently for sports lessons including swimming and used public transport on school trips and as no medication was taken in school did not need a medical care plan.
    There were some attendance issues linked to JIA but not enough to mean a referral was needed for this.
    I had to fill in the forms truthfully but this could cause disappointment/anger with parents.
    I had no problems filling in the form and would signpost parents to it when I thought it appropriate.

    Is this possibly the case with your daughter?
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • tkachevtkachev Posts: 8,332
    edited 30. Nov -1, 00:00
    It isn't awarded for the condition but how much help she needs with every day tasks such as dressing . Little evidence should have nothing to do with it.

    i would appeal.

    Elizabeth x
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • SloshSlosh Posts: 3,194
    edited 30. Nov -1, 00:00
    In the case of the pupil I know although she has JIA and is on medication and has regular reviews with GOSH, on a daily basis she has age appropriate self care skills and no adaptions have been needed at school. Perhaps this is what the consultant meant by "little evidence". However in terms of the form, if it does affect her significantly in school the form can be completed by the Inclusion Manager/SENCO who is often in a very good position to do this and would be able to provide clear evidence of adaptions that are needed on a daily basis and the impact of the JIA.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
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