‘DWP PIP makes me feel I’m not disabled enough’ – and that’s without the cuts

Katty King-Coulling (39) from Maidenhead sustained a spinal cord injury that has left her with debilitating chronic pain. Seven years on, she’s struggling with the Personal Independence Payment (PIP) benefits system and the feeling of being “not disabled enough” for help. With the proposed Department for Work and Pensions (DWP) changes to PIP, Katty believes her assessments will only get harder, while her condition and her needs will remain the same.

DWP PIP: ‘not disabled enough’ for support

In 2018, Katty woke up to excruciating pain in her legs, which she described as “immense burning and shocking pain”. She was eventually diagnosed with cauda equina syndrome, a rare and often misdiagnosed condition which leads to spinal cord injury caused by compression of the lower spinal cord.

Katty was working as a healthcare assistant for the NHS when she sustained her injury but has since had to give up work. Since her injury, Katty has gone through three DWP PIP assessments and says she has struggled each time to get people to understand her disability.

On average, it’s estimated that it costs an additional £1,010 a month for a disabled person to have the same standard of living as a non-disabled person. At her latest assessment, Katty was downgraded to the daily living standard rate of £73.90 a week, or £320 a month, and has lost her mobility funding.

As Katty has full use of her arms and core, can walk short distances, and has no visible signs of her disability, she believes people have a harder time understanding her injury and her needs. She says she often feels “not disabled enough” to receive compassion, understanding, and help. She said:

If you can wash your top half, if you can dress your top half, then you’re seen as not that disabled.

But this is far from the reality for Katty, who needs her husband’s support to shower, dress, cook, and clean. She said:

On a bad day, I’m lucky to get out of bed and the only reason why I do get up is because of my daughter. She needs me and I’m prepared to go through more pain if it means that she is looked after the best I possibly can.

No massive sign saying ‘I am disabled’

Like any parent, Katty’s priority is giving her daughter a healthy, happy life and her DWP PIP payments go to her daughter’s childcare. With chronic pain, it’s difficult for Katty to keep up with an active toddler, as lifting, carrying, and chasing after her daughter is all a challenge.

Nursery has become the best solution for the family as her daughter is occupied for most of the day when Katty’s husband is at work, helping to relieve some of the pressure of balancing parenting with maintaining her own care.

Unable to work, DWP PIP has become a lifeline to Katty and her family. But when it comes to PIP assessments, Katty said:

It’s variable on who you have, and it shouldn’t be like that. It’s the anxiety when you go through PIP, you feel like such a fraud because to look at you, there’s nothing there. There’s nothing glaring you in the face. No massive sign saying ‘I am disabled’.

Katty has decided to fight back and since sought support from Spinal Injuries Association (SIA), who advocate for people with spinal cord injuries. The SIA are now helping her with her appeal.

Teresa Skinner, support line coordinator at the charity, said:

Calls regarding benefits, particularly PIP, are a daily enquiry now, mainly because their benefit has stopped. No face-to-face assessments is a big problem: health conditions cannot be assessed over the phone properly. It causes severe hardship, not being able to get out because of loss of cars, not being able to have personal care and help around the home, the list can go on. It is causing severe hardship and further mental health problems.

DWP PIP: scoring 4 points challenging for people with hidden disabilities

Katty said:

Scoring 4 in one PIP category is challenging for those with hidden disabilities, as assessments may not fully capture my condition’s impact. Hidden disabilities often have symptoms that are not visible or easily measurable, leading to an underestimation of needs and we see that even now.

A confirmed diagnosis should validate our condition, rather than relying on a points system. Without changes, more people like us will face less validation and struggle to contribute to society if the government and working environment continue to fail us.

Reflecting on her own experience with DWP PIP, Katty said:

Not everyone’s cauda equina or spinal cord injury is the same. It’s variable. So, I don’t know what disabled box we have to fit in to say yes, we are entitled to PIP or to help.

The support line for the Spinal injuries Association is at 0800 980 0501

Featured image supplied