Many of our community will understand the difficulties that come with trying to secure disability benefits. As scleroderma is still a little known illness, it can take some hard work to secure the benefits you are entitled to. To help you figure out how to approach the process, we've asked members of our community to share their experiences.
Georgina Foster:
What benefits do you receive? I have applied for a disabled badge but was declined.
What was the process like? Quite tedious and bureaucratic.
What was the assessment like? I think the confusion about autoimmune diseases, and especially scleroderma, means you are at the mercy of whether someone understands the complexities.
What advice would you give to others about applying? Feel no guilt and go in knowing it is your human right to acquire the help and support you need.
Julie Taylor for her daughter Isla:
What benefits do you receive? Disability Living Allowance. Applied in October 2017 and was awarded finally at tribunal last month.
What was the process like? Dreadful and hugely frustrating, as we had to go to tribunal to be awarded the care component.
What was the assessment like? It was unfair and difficult. Somehow the form seems set up for better-known conditions. Keeping a daily diary helped them to understand the situation and I made it clear in the tribunal that the system feels unjust when we should be putting our time and attention elsewhere, not fighting DWP as other people without rare conditions do not get put through it.
What advice would you give to others about applying? Don't give up or be put off if you are turned down. Ask for your mandatory reconsideration and go to tribunal if needed.
Matthew Barry:
What benefits do you receive? I have been on Personal Independence Payment since birth because I am registered blind (not due to scleroderma). I filled out a form for Employment Support Allowance and took it to a job centre where they turned me away saying ESA wasn't a thing anymore and I needed to apply for Universal Credit, they also told me it was basically the same but just under a different name. However I have just got my first payment from UC and it's half of what it would be if I were on ESA, so I'm not very happy about that.
What was the process like? Applying for universal credit is quite complex because there seems to be a lot of different versions, I had to go through a third party to make sense of it all and get an appointment sorted. As UC is through the job centre they aren't very forgiving with dates, if you miss too many appointments without 'good enough reasons' they can reduce or stop the payments.
What was the assessment like? I am yet to have a medical assessment for 'fit for work', there is a 4-6 month waiting list for an examination which I think is preposterous, in this time you have to provide sick notes from the GP saying you are not fit for work.
Georgina Pantano:
What benefits do you receive? In 2012 I was awarded ESA and DLA until it changed to PIP.
What was the process like? I found the process very overwhelming and stressful. A lot of forms to fill out, questions very difficult to answer and confusing. I was lucky in 2012 to find a charity in my town that offer help filling out benefit forms. They had a lady come in from the council that will go through every question, explain what they're looking for, made sure I used the right wording, that I didn't miss any important points out or not to over look something myself.
What was the assessment like? I found it very stressful and my symptoms flared up because of the constant worry and pressure. I was extremely lucky to have an understanding assessor who suffered from Raynaud's so could. It was after the assessment that I felt some things were overlooked, points taken out of context and read by someone unfamiliar with scleroderma. I found it difficult to explain especially on paper when having to tick yes and no answers when this condition is so unpredictable.
What advice would you give to others about applying? The advice I'd give to make use of any services that can help you fill out forms. I believe it really helped me and gave me an insight to how questions need to be answered. Also, when answering questions think of it as if it were your worst day of symptoms to give a true account of living daily with such a debilitating rare condition.
Ashton Rains:
What benefits do you receive? Currently on PIP.
What was it like going through the process? Assessment for ESA was fairly intense, and I could tell that I was being watched closely from the minute I walked into the building. I took my Dad along for support, along with all of my medical notes. She was a physiotherapist, and mentioned that she could see how bad my hands were and lack of physical movement. Explaining the Scleroderma was hard, but she had looked it up so knew little bits. I explained everything in detail and thought about my absolute worst day when answering questions. I was honest.
What advice would you give to others about applying? Take someone with you, take as much evidence as you can - better to have too much than not enough.
Some of the benefits you, or your family member, might be entitled to include: Employment Support Allowance, Disabled Living Allowance, Personal Independence Payment, Universal Credit, Carer's Allowance, Attendance Allowance and Access to Work. You may also be eligible for a blue badge.
Refer to our
basic guide for applying for employment support allowance here.
For information on benefits visit:
www.gov.uk and for more details about your eligibility contact Citizen's Advice at 0344 411 1444.
