Katty King-Coulling (39) from Maidenhead sustained a spinal cord injury in 2018 that has left her with debilitating chronic pain. After her Personal Independence Payment (PIP) benefits payments were wrongfully downgraded, she turned to Spinal Injuries Association for support and has since regained her enhanced payments.
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.
After emergency surgery and rehabilitation that included physiotherapy and occupational therapy, Katty was left with bladder incontinence and chronic pain that limits her mobility and that she describes as a constant “background noise”.
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 PIP assessments and says she has struggled each time to get people to understand her disability.
At Katty’s latest PIP assessment, she was downgraded from the enhanced daily living rate of £110.40 to the standard living rate of £73.90 and she lost her mobility funding of £77.05 a week. Katty believes the change to her benefits was due to the assessor not understanding her needs as someone with cauda equina syndrome and autism.
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.
“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 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 her parents and I’m prepared to go through more pain if it means that she is looked after the best I possibly can.”
Knowing that her PIP payments had been wrongfully downgraded, Katty reached out to Spinal Injuries Association’s support line. They were able to connect her to trusted legal partner Hugh James, who supported her appeal. She also worked with SIA’s PR and media team to appear on BBC Radio Berkshire, BBC South East Today, and BBC News online. After telling her story publicly and fighting her case at appeal, Katty was awarded her previous PIP rate of enhanced daily living and mobility.
Katty said, “Receiving the enhanced PIP after an appeal can feel like a long-awaited validation – proof that persistence pays off. It’s more than just financial support; it’s a recognition of the challenges I face and the dignity I deserve as a person with a hidden disability.
“To anyone still fighting their case: don’t lose hope. The system can be frustrating, but you are not alone.”
SIA offer guidance, and experienced advisors can help you frame your responses effectively. Keep pushing forward – your voice matters – YOU matter, and support is out there.
More information
Our advocacy team is here to help you to navigate the processes and ensure you get the quality care you deserve. We will provide advocacy and representation if you are refused or given inappropriate support. Our team can support you at meetings and assessments for NHS continuing healthcare and guide you through discussions with local authorities for social care provision. Our support and advice can help transform your options.
For further information, please get in touch with the advocacy team by emailing advocacy@spinal.co.uk.
Our media team recognise the power of individual voices to change perceptions and are here to offer advice.
- Sharing your story with the media should not regarded as a replacement to seeking the expert guidance, support or advocacy that SIA provides.
- There are no guarantees that any story will be published, but for those that are featured, in most cases we have seen benefits both to the individual and others in a similar situation.
If you are considering this option, please email media@spinal.co.uk with a brief introduction to your situation and we will be in touch to advise you further.
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