Right, let’s get one thing straight from the off. If you have Hidradenitis Suppurativa in the UK and it significantly affects your daily life, you are absolutely entitled to claim PIP for HS. Don’t let anyone—not a GP, not a dismissive voice in your head, and certainly not the Department for Work and Pensions (DWP)—tell you otherwise.
The problem is, the system is a proper bureaucratic nightmare, seemingly designed to make you give up. They will probably reject you; it’s almost a given. I was rejected. But I fought back, took them to a tribunal, and I won. This isn’t just a guide; this is my battle-plan, honed in the trenches, to help you get the financial support you’re bloody well entitled to.
(For a broader overview of all available support, you can also check out my main Benefits (DWP) page.)
What is PIP, Anyway? The Two Parts That Matter
Before you start, you need to understand what you’re fighting for. PIP isn’t about your diagnosis; it’s about how your condition affects your ability to function. It’s broken into two parts:
- Daily Living: This is about your ability to do things like prepare food, wash and bathe, manage your treatments, and get dressed. With the constant pain, fatigue, and complex dressing routines of HS, this is a major battleground for us.
- Mobility: This is about your ability to plan and follow a journey or move around. If your flare-ups are in your groin, buttocks, or feet, walking can be a form of torture. This is the second front of our war.
You get points for each activity where you can prove you need help. Your job is to gather the evidence to prove it.
Building Your Arsenal: Evidence is Everything
The DWP’s first instinct is to disbelieve you. You need to hit them with a mountain of evidence so undeniable that they can’t ignore it.
The Medical Paper Trail
This is your foundation. Start gathering every shred of paper you can find: a copy of your diagnosis letter, a list of all the failed medications you’ve tried, letters from specialists, details of any surgeries, and prescription lists.
The Pain Diary: Your Secret Weapon
This is the single most powerful tool you have. For two solid weeks before you fill in the form, keep a brutally honest diary. Don’t just write “it hurt.” Write the gory details. For example:
“Woke up with a new flare-up in my groin. Took me 20 minutes to get out of bed. Couldn’t stand in the shower, had to wash sitting on a stool. My partner had to help me change the dressing on my armpit as I couldn’t lift my arm properly.”
This is the real-world evidence of how HS impacts your daily living and mobility. It’s far more powerful than any doctor’s note.
The Dreaded Assessment and the Inevitable Rejection
After you submit your form, you’ll likely have to attend an assessment. Be honest. Be detailed. Don’t put on a brave face. If it takes you ten minutes to put your socks on, tell them that.
Then, prepare yourself: they will probably reject your claim or give you a low score. This is not a failure. This is part of the process. It’s a demoralising, soul-crushing part of the process, but it’s the gate you have to go through to get to the next stage. You will request a “Mandatory Reconsideration,” they will likely reject you again, and then you can appeal to an independent tribunal. This is where you will win.
For expert, free advice on this process, organisations like Citizens Advice are an invaluable resource.
Don’t Fear the Tribunal: Your Day in Court
The word “tribunal” sounds terrifying, but it’s not like a criminal court. It’s usually just a couple of independent people—often a doctor and a disability expert—in a room who will actually listen to you. They are not the DWP. Their job is to look at your evidence fairly.
This is where your pain diary becomes your trump card. You can explain, in your own words, with your own evidence, exactly how this bastard of a disease grinds you down day after day. It was at this stage that my decision was reversed.
It’s a long, hard slog. It’s designed to make you quit. Don’t. Your fight helps every single one of us who comes after you.
Have you been through the PIP process? What’s the one piece of advice you’d give to someone just starting out? Share it in the comments. Let’s build our arsenal together.