Living with sceladerma

[Pixieluna1]

Hi there I have sceladerma and as I get older my problems increase.

I have a part time job ( I wish I could work more) as this is all I can manage.

I'm a single mum and struggling.

I have applied for PIP from the government and they cannot award me any payment.

I don't understand why.

I cannot use my index fingers or thumbs as they are ceased at the joints and I have trouble with my feet , to the point of not being able to walk some days.

Has anyone got any advice on what I can do?

[PMRpro]

Appeal the decision - a very high proportion of appeals are awarded. Which doesn't say much for the process - but it is designed to put people off and the words used are critical. CAB used to help but they are able to offer far less now - worth asking but there are also other charities who will help you fill out the forms with the right buzzwords.

[Debbie_kinsey Administrator LUPUS UK]

Hi Pixieluna1

I'm sorry to hear you are struggling to get financial support. In case it's useful, we have some guides on applying for different benefits which you can email me to receive, including how to complete the forms or do an appeal. Just take a look at the list on this page and let me know which you would like: lupusuk.org.uk/benefits/ (Though just a note that I will be finishing for Christmas break later today, so I will get back to you in the New Year if you email me after today).

We also held a disability benefits workshop a couple of years ago, and you can watch the recording of the one on PIP here: youtube.com/watch?v=3cMmOKX...(Not working as expected?)

You might also find the grants and benefits tools on Turn2Us useful, as they help you to work out if there is anything else you might qualify for: turn2us.org.uk/

I hope that these links are helpful to you.

Take care, Debbie

[lilah-tiggy]

Tell them you have an autoimmune disease, connective tissue disease which comes under scleroderma, I got pip because of it. Tell them how bad you are on a day to day basis, never say you have good days, as they use it against you. Hope this helps xx

[OldTed60]

There is a good Scleroderma and Raynaud’s charity, SRUK, with webinars on benefits so might be a good idea to follow them and post or phone their helpline to ask about PIP and how to appeal. sruk.co.uk/find-support/uk-....

[Pixieluna1 in reply to OldTed60]

Thank you I will have a look .

[OldTed60 in reply to Pixieluna1]

Forgot to say they have a HealthUnlocked community as well so you could post this there as well X

[Lupiknits]

Others have given excellent advice. I’m an example of someone who successfully got my PIP back after going to tribunal. DWP make the process extremely daunting but annoyed judges don’t!

If your local council has a benefits advisor, they can be extremely helpful.

Don’t give up! x

[Pixieluna1 in reply to Lupiknits]

I have just sent off an appeal to the judge so hopefully they will help me .