Any advice will be welcomed - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Any advice will be welcomed

Anne2018 profile image
5 Replies

My adult son has hEDS & POTS recently diagnosed, we applied for a bus pass and we were refused. The grounds for refusal was that he did not have PIP Mobility, or a blue badge, he was awarded PIP daily living 2 years ago, since then his symptoms have increased & we are due to renew PIP.

I was advised that having PIP was not a deciding factor for getting a bus pass, should I write and appeal with a doctors letter as well as the diagnosis letter I enclosed before with a more detailed symptom list on how he is affected by his diagnosis?

Any suggestions at this stage would help

Thank you 😊

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Anne2018 profile image
Anne2018
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5 Replies
aliD47 profile image
aliD47

Do you have the support of social care? If not you should they will assist you in your claims pip, bus pass, blue badge. I've found them most helpful for my son who is autistic. I'm now seeking their help as I'm newly diagnosed myself with eds and struggling to hold down my job.

Anne2018 profile image
Anne2018 in reply to aliD47

No :)) I’ve been very much on my own during this long journey. Are they with the council ? How would you suggest that I approach them.

Thank you, these services are out there, but unless you are guided to them people like me just plod on getting stressed 😥

aliD47 profile image
aliD47 in reply to Anne2018

Because you technically are his carer and he is suffering from a disability. They have people who come and help you fill in forms for pip making sure the wording is right etc. And they offer help with obtaining any other benefits your entitled to. Social care is via council yes just Google local social care services

Anne2018 profile image
Anne2018

Oh thank you, well I’ve learnt something today invaluable.

I’ll get in touch with them on Monday

helllo Anne-

did you get the bus pass for your son?I have had one for about five years and was refused on expiry but contacted the Senior Development Officer (i think thats the title)and he issued my bus pass.I also got a blue badge on appeal to the council because the claim form had the option to apply for a blue badge without being in receipt of PIP mobility.

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