Elhers danlos syndrome and Personal independent payment

I do high rate daily living under PIP as have to have my husband with me at all times from washing to pulling my trousers up after the toilet. On my good days I can walk around town but I am then bed/wheelchair bound for a week or so after but on my bad days I can't walk at all. What mobility rate do you think I will receive standard or higher thanks

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  • I cannot go out without someone with me as I need someone with me at all times to help me put my joints back in if they come out otherwise I panic

  • Hi,

    Myself and brother both receive higher rate mobility, It was not easy though I was turned down twice and only when an benefit agent visited did I eventually get it.

    As long as you have Drs evidence and letters from specialists you should be fine. :)

  • You see some days I can walk around town but then I'm laid up afterwards for a few days and some days I can't and have to use a wheelchair..... But I have to have someone with me at all times as I panic and get anxiety when they come out and I can't get them back in myself.... I'm hoping to get a mobility car so my husband can take me out and about but I read you can only get this with higher rate .

  • My daughter is in same position and lost her mobility car as reduced to standard rate. Appealed but failed :-( so so wrong

  • I have seen this:::

    Its the scoring system they use

    MOBILITY ACTIVITIES

    1. Planning and following journeys.

    a. Can plan and follow the route of a journey unaided. 0 points.

    b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. 4 points.

    c. Cannot plan the route of a journey. 8 points.

    d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid. 10 points.

    e. Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant. 10 points.

    f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. 12 points.

    2. Moving around.

    a. Can stand and then move more than 200 metres, either aided or unaided. 0 points.

    b. Can stand and then move more than 50 metres but no more than 200 metres, either aided or unaided. 4 points.

    c. Can stand and then move unaided more than 20 metres but no more than 50 metres. 8 points.

    d. Can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres. 10 points.

    e. Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided. 12 points.

    f. Cannot, either aided or unaided, –

    (i) stand; or

    (ii) move more than 1 metre. 12 points.

    Personal Independence Payment (PIP) Mobility Component Points Scores

    To get an award of the mobility component you need to score:

    8 points for the standard rate

    12 points for the enhanced rate

    For mobility, the points need to be scored from mobility activities 1-2 above.

    As with daily living above, you only score the highest points that apply to you from each activity, but you can add points from activities 1 and 2 together to reach your final

    Looking at this because I can't go out with someone with me whether I am familiar with the route or not. Would I score 12 points for number 1??

  • I receive low mobility but wheelchair services recommended that I reapply for the higher rate. I use forearm crutches to mobilise but I am in pain with every step. If I have to stop for any reason my body wants to collapse and the pain through my spine down to my feet is unbearable. As I can walk with an aid I'm not entitled to a wheelchair assessment but I have been advised to purchase one for anything longer than a short walk. The consequences of walking don't seem to be taken into account with PIP as if you can walk with aids for 20-50 metres, whether in pain or not, you're likely to receive the lower rate. It is worth asking for a reassessment, especially if things have changed from previous, but if you're anything like me I know I push to the extreme especially if following the crowd and the impact on the body is also extreme. I have the additional issue with pain as no pain medications work so I'm constantly at a high level. I also don't get the rest I know my body needs due to family commitments and terminal ill health of my Husband. I've been waiting nearly a year for a referral to a rheumatologist, due to a hospital blunder and sitting on the referral, and I may request a PIP review once I've seen someone from the team as that's what I've been advised to do. There's no harm in asking for a review but my only worry is that they may and can downgrade as well. I've also had to reduce my working hours as the GP's advice was to medically retire. I'm office based and on telephones now as had to give up retail management 5 years ago due to my body giving up on me. I wish you well and apologies for the long reply. 😊

  • I'm currently off work on sick leave. Don't know if I'm going to be able to return to any type of work as my joints come out up to 50 times a day and need someone with me at all times as I can't get them back in on my own. Even simplest of lifting my arm . It's with my mobility some days I can walk fine but then if my legs or hips go I'm then laid up for a week or so and also I can't go out on my own due to not being able to put back in myself as have an anxiety and panic attack. I'm just wondering what points they will score me for this higher or lower rate mobility .

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