The challenges Sheila faces day to day are immense. Leaving her house makes her extremely anxious as she constantly worries about finding a toilet in case of emergencies. Moreover, her Arthritis causes her intense pain, adding to her difficulties. Along with Sheila's Arthritis and her Crohn's Disease, she has also had two Pulmonary Embolisms (multiple blood clots the lungs), which have left her on lifetime anticoagulation medication. The medication is powerful, and it can be contraindicative to the medications she takes for the pain she gets from Crohn's Disease, arthritis, and any other episodes. 

Now you may think this would make Sheila a viable candidate to receive PIP benefits? Unfortunately, you would be wrong, and from what our supporters are telling us, Sheila’s case is not unique.

Sheila’s negative experience of the PIP process inspired her to step up and have her voice heard. She played a key role as a speaker at the All-Party Parliamentary Group event, representing individuals living with Crohn's and Colitis, ensuring their voices are heard and their experiences acknowledged.

Can you tell us a little more about your experience with the PIP application process?

I applied for PIP earlier this year, reluctantly, as I am aware of how difficult it is to be successful, and I don't like having to "prove" that I am not shirking the system. I have lived with these conditions for around ten years. I think it is very telling that it is only now I have had the heart to apply. However, a successful PIP application would help me prepare to return to work and come off Universal Credit.

I underwent a telephone PIP Assessment, and though the assessor was pleasant when I received an unsuccessful claim letter, I was frustrated at some of the information she had written down. For example, because I laughed at a joke, it was observed that my mental health was fully intact. On reflection, that interview did not represent the true nature of my disabilities, and how they affect my life, and just reaffirms to me that the PIP application system needs a good overhaul.

How do you feel the application and assessment process for Personal Independent Payments could be made more accessible and supportive for individuals with a wide range of disabilities?

All PIP assessments should be recorded for transparency. If assessors are not medical doctors, then they should be subject to rigorous ongoing training, around hidden disabilities. From my own experience, it is clear that some assessors are not clued into how challenging it is to have to constantly prove you are ill enough to require support. The effects of this on one’s mental health, again unseen, is unfathomable to society. PIP assessors, should be trained by medical experts, disability experts, and disabled people themselves so  they gain that all-important understanding. 

Why did you decide to get involved in the PIP event at parliament? 

As a black, working-class, disabled woman, living in the north of England, my voice is often not accessed, and if it is, it is often not truly heard – especially in the field of health. Having access to an All Party Parliamentary Group felt like the very best way to get my points across about the inequalities and treatment around the disability benefits system. 

How did it feel to speak at the event?

It felt great. I sat right next to the Chair, and it felt relaxed, as if everyone in that room was not just listening but hearing the other two volunteers (from the MS Society and Parkinson’s UK). It also felt like such a joy – though that sounds like a strange thing to say – due to the camaraderie with the other two volunteers. We were able to support each other’s statements about the unfair and quite frankly, traumatising experiences going through the PIP system journey. 

What do you hope to hear from politicians in response to the PIP event?

Ultimately, I would love to hear that there are real moves to scrap the current PIP application system and replace it with a co-produced system, where ALL relevant people are involved to create a system that is fairer, transparent, accountable, and timely. 

We want to say a huge thank you to Sheila for her time and commitment to support our campaign around the PIP application process to make sure that benefits work for people with Crohn’s and Colitis.

At Crohn’s & Colitis UK, we believe the government should be doing more to support individuals like Sheila, who are living with Crohn’s, Colitis, or other fluctuating conditions, to live a life without fear or worry of how they will support themselves if/when their condition deteriorates.

We’re campaigning for changes to the way PIP assessments are conducted. We urge the government to implement our recommendations, ensuring that people like Sheila receive the support they rightfully deserve. If you want to read our recommendations, head to our policy update for more information.

You can find out more about this work in our joint briefing for the event here.

If you would like to share your experience of the PIP process, please contact media@crohnsandcolitis.org.uk.