My disability won’t define me
Tiffany was born with malignant hyperthermia and central core disease.
“I’ve never felt upset or negative about my disability purely because my parents never made it an issue or treated me any differently. But I do remember when I was 10, I sat between my parents opposite a consultant, who abruptly stated: “She’ll be in a wheelchair by 20.” Even at that age, I knew I would fight and show them my disability wouldn’t define me.
“I’m still not in a wheelchair, but I do find these conditions challenging, both physically and mentally. My spine is hampering my lung capacity, and my swallowing is probably my worst, as it can be quite scary. In the near future, I’ll be fitted with a permanent peg feed.
“I have severe arthritis in my joints, which is extremely painful, and I have two full metal ankle replacements. I get fatigue in the afternoons, which we joke and call ‘zombie time’. My muscles are so tight that it causes headaches and stiffness around my joints.
“Now that my condition is getting worse, I also suffer with anxiety,” says Tiffany.
I felt so elated to see a simple factsheet
At her annual appointments in Poole Hospital with the Dorset Neuromuscular Service, Tiffany sees several members of the team, including healthcare professionals Kathryn Docherty and Suni Narayan (who is also MDUK’s Head of Clinical Development). At her 2018 appointment, Tiffany mentioned her PIP assessment had arrived. Kathryn immediately wrote her a supporting letter, and Suni suggested she contact the MDUK advocacy service.
“That was when I had my first call with Emma. From that call, to the numerous emails to and fro’, I couldn’t believe how amazing Emma was. She also wrote me a letter and enclosed factsheets about my condition. I felt so elated to see a simple factsheet, as I’d never seen one on CCD in 46 years.
“The whole process of PIP was stressful, but Emma advised me which path to take throughout. My claim finally was successful and I know part of this was because of the help I had from all involved.”
“I’d been receiving DLA [Disability Living Allowance] since 1997, when it was awarded on an indefinite basis. So when I had to reapply for PIP, I felt extremely stressed, as I knew it would again be a fight. A couple of years ago, when I’d had to swap to ESA [Employment Support Allowance], they didn’t recognise my conditions. I’d had to pay a specialist solicitor to help me, and the thought of having to repeat that, with more at stake, was scary.
This is when I made a complaint
“My first PIP appointment was cancelled one hour before the set time, and my second appointment was cancelled whilst I sat in the building, waiting to go in. This is when I made a complaint and finally my third appointment went ahead. The stress from the process was awful and definitely made me ill.
“The form was like a book, which had another book enclosed in it, which explained the form. My husband and I are both academic and we were perplexed. It took us a whole weekend and around 10 hours to complete. I was so lucky to have support and we both wondered how people would cope alone.
“The questions were not easy and it was hard to fully describe the whole picture. I had to leave a couple of sections blank, which made me more anxious about the final decision.
“If I hadn’t got PIP, I truly believe that life would be very negative and my condition would deteriorate much faster. Getting PIP means having my car, which gives me freedom and the ability to make a limited situation easier.
“Using public transport can be tricky when you are disabled and suffering from anxiety. PIP also enables me to get any equipment I need and covers my yearly prescription fee for all my medication. It also pays for swimming to keep my muscles moving, and for the support of a trainer, who has helped me through five major operations.
“Emma was so professional and supportive throughout; she’s an asset to MDUK. I’m so thankful for what MDUK has done for me. They make living with disability that little bit easier.”
PIP’s our most asked-about topic
"We in MDUK’s advocacy team know that PIP applications and assessments can be daunting, especially if you’re applying for the first time.
"Many people ask us about PIP – it’s become our most asked-about topic – so we’re all really experienced in supporting people through their first applications, reassessments and the reconsideration and appeals processes. We want you to get the support you’re entitled to, and we can guide you so you have the best chance of going through the process without any problems.
"We’re always thrilled to hear about cases like Tiffany’s, which like many, ended with her getting the support she was entitled to. So if you’re having difficulty getting the support you feel you should be getting, don’t hesitate to get in touch with us.
“You’ll find a warm, listening ear and someone who knows the ins and outs of these processes. And we’ll always try our best to help you.”
Emma Jeremy, MDUK Advocacy and Care Co-ordinator
Here for you
Emma is one of a team of people at MDUK who can help you with your PIP assessment, or give you advice about getting the care, support and equipment you’re entitled to.
MDUK is working on a new guide to PIP, as well as a benefits report. Both will launch later this year – we’ll keep you posted.