Disabled people
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Hi - I'm stuck

klh_1987klh_1987 Member Posts: 8 Listener
Hi all, 

I came across this forum on google and thought id join. 
I am 32 years old and have only just been brave enough to admit that I am disabled. i have a number of invisable disabilities these are

- Bilateral hearing loss. need to use hearing aids
- Dyspraxia and Mild dyslexia
- Fibromyalgia
- Elhos Danlos Syndrome (Hyper mobility type) 
- Severe IBS and Gluten intolerance
- had a stroke at 6 months old

I am not really sure what help I am entitled too, as now i am getting older things are becoming more expensive. I have a radar key, a sunflower lanyard for when travelling and a disabled bus pass. I am applying for a Blue Badge and PiP (not feeling to hopful with that one) anyone else advise on what other help is available? Although i have has these diagnosis for some time although fibro was the first one that made me realise why im gunna need help. 

Thanks in advance


  • chiariedschiarieds Community Co-Production Group Posts: 9,252 Disability Gamechanger
    edited January 2020
    Hi @klh_1987 - I'm pleased to be the first to welcome you to this friendly & supportive community. Thank you for joining & sharing about yourself. I also have the hypermobile type of Ehlers-Danlos Syndrome & there are other members who have joined that also have this. There are others with most of your other problems too, so you'll find a lot of understanding here. :)
    Have  you applied for PIP yet?
  • klh_1987klh_1987 Member Posts: 8 Listener
    Hi, nope not yet, im a bit worried too as i am not going through any specialists yet still waiting for the appointments so i think they will decline me. 
  • chiariedschiarieds Community Co-Production Group Posts: 9,252 Disability Gamechanger
    Hi again @klh_1987 - if you're facing difficulties now, you don't need to wait on future specialists appointments. PIP is not about your diagnoses (altho you list them in the booklet you need to complete), it's about how your disability affects you. There are 2 sections; one concerning activities of daily living, & the other mobility. I'll give you a link (sorry it's very lengthy, but is the DWP's guidebook for the health care professionals who do your face to face assessment) about this. You need to score 8 or more points to receive the standard rate, & 12 or more points to get the enhanced rate, for each section. So, perhaps have a look, & see what you think. At least this will assist you make an informed decision. See: https://www.gov.uk/government/publications/personal-independence-payment-assessment-guide-for-assessment-providers/pip-assessment-guide-part-2-the-assessment-criteria
    I don't know if you're a member of the EDS support group; it's free to join, but you can also request the Benefits and Work Guide to PIP. I used this as I went through the PIP process before I joined Scope; both say similar things. See: https://www.ehlers-danlos.org/
    The advice given here on Scope is that for those 'descriptors' where you have difficulty, it's a good idea to give 2 examples of any problems you recently faced when attempting the activity. But if in doubt, ask here for help before completing the booklet.
    Just to reassure you, I had no recent input from any specialists when I applied. My GP said he would support me, & wrote me a letter, but of course he could only describe the physical problems I have & my mobility.
    I hope this helps. :)

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi and welcome,

    I'm one of the community champions here on scope. Whether you're entitled to any other benefits will totally depend on your circumstances and with no information it's impossible to give any advice. I'd advise you to visit a local advice agency near you for a full benefits check.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • deb74deb74 Member Posts: 766 Pioneering
    Hi @klh_1987. You have nothing to lose applying for pip. I have been getting pip since 2016 and was sure I was not going to get it. I have spina bifida, scoliosis, osteo arthritis, cervical spondylosis, hydrocephalus, epilepsy, fibromyalgia and ME. (non of which are visible) but all have an impact on my life. I was told I should apply for it by a local housing advisor who was helping me to find a house. It had never occurred to me that I might be able to get help.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @klh_1987 and a very warm welcome to the community! 

    Here is the benefit calculator which could give you an indication of the benefits that you'd be entitled to.

    Also, here is AdviceLocal that will show you where you can get face to face advice that is local to you.

    Please do let us know how you get on and if there is anything else we can do to help. :) 

  • klh_1987klh_1987 Member Posts: 8 Listener
    Thank you everyone. So far i have applied for 2 cards that give diabled patrons discounts on places. 
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