The impact of welfare cuts for those with spinal cord injuries

By freelance journalist and spinal cord injury survivor, R.F. Hunt

There is fear and anxiety amongst the spinal cord injury (SCI) community regarding the government’s proposed plans for tightening the eligibility for Personal Independence Payments (PIP) using the ‘daily living’ section of PIP.

Many people with SCI, like Julie, Janet and Dan in this article, are worried they might not fit within the extremely tight parameters set by the government.

This mental health toll is something that is of great concern for the Spinal Injuries Association, (SIA) the organisation who represent those living with a SCI.

The current government watched as the last administration callously cut the benefits of the most in need and the impact this then had in terms of mental ill health and suicide.

Yet, this new Labour government, barely a year old, who witnessed this chaos unfold before them are now going down the same road, boasting about the amount of welfare reforms they are undertaking.

These proposed ‘reforms’ include a tightening in eligibility for Personal Independence Payment – a ‘gateway benefit’ just for those who are disabled.

Even those with high level SCI needs might find it a struggle to get 4 or over in each ‘Daily Living’ section. That shows just how tight these parameters are and just how many people living with substantial needs might lose out.

With these cuts to PIP likely to affect many people with SCI, it is so important the voices of those potentially impacted are heard.  But many fear this government aren’t listening.

That’s because cutting such a benefit like PIP for someone with a SCI, could have a severe impact on their ability to be independent and contribute to the world, including through work.

Losing independence will also add to the cost for government rather than reducing them and the cost to the person with SCI could be their mental health with increased anxiety, depression and suicidal thoughts.

Julie from the East Midlands damaged her spinal cord when she fell down the stairs sustaining an injury at T12.

She said: “If my PIP was cut then I wouldn’t get my Blue Badge which could leave me housebound. I would need to access more services from the NHS and get more help from them. I wouldn’t be as independent.”

Due to childhood trauma, Julie said: “I pay privately for trauma therapy that isn’t available on the NHS. My mental health would be affected if these cuts meant I couldn’t pay for my therapy.”

“I can be independent at the moment, as I can afford to buy the products and services I need on a daily basis. But without that, my quality of living would drop, and I would become dependent on others.”

Remaining as independent as possible is something that is incredibly important for those with disabilities such as a SCI.

The Disability Consortium said 84 per cent of those questioned said PIP helps them stay independent with it.

Many of the expenses those with a disability rack-up are due to society not being ‘set-up’ and accessible for those with a disability.

This can affect every area of life, such as a higher rent or mortgage for accessible housing, higher transport costs, expenses specific to a disability and products and services including care.

Rather than fixing these societal problems, they’ve instead gone down a punitive approach by targeting claimants of PIP.

Clinical Psychologist, Dr Jay Watts, puts it better when she said: “Instead of scapegoating the vulnerable, ministers should fix the systems that fail them, not dismantle lifelines.”

Lots of people with disabilities chose to vote for this government hoping for change.  Hoping this new government had a better understanding of the complexity and cost of living with disabilities.

But now they don’t just feel abandoned by this government but unfairly and cruelly targeted.

This is how Janet from the East of England feels.

She has SCI due to extensive multi-layer degenerative disc disease and has had to undergo multiple surgeries.

She has both bowel and bladder problems, and further issues, including depression due to poor pain management.

With such extensive disabilities there’s a high financial price-tag. Janet said she uses her PIP to pay for physiotherapy, massages, hydrotherapy as well as paying for psychotherapy.

Due to incontinence, she must replace ruined clothes and bedding plus pay for the extra laundry costs and water usage.

She pays for help in her garden and pays for items such as grabbers and a massage chair seat.

She said: “I worry about the costs I have that are ongoing, I score 10 points but don’t score 4 in one category.”

I asked Janet what she thought of the Labour government who were trying to push through these reforms. Janet said: “They just don’t care.

“Labour is targeting the disabled because they believe we do not have a voice.

“They will rue the day they proposed these cuts come the next election.”

Dan from East London has a T3 complete SCI due to a traffic accident. He said losing PIP would be very worrying as it provides a safety net.

He said: “It allows me to live in my flat and pays for essentials plus emergency unexpected items.”

Looking back at the years since his accident, Dan said: “It’s been a long journey. Without my amazing family and friends, it would impossible.

“There is always a new challenge and often there is little or no support, so the learning curve can be very punishing along with constant pain and chronic fatigue.”

Dan is one of the many disabled people who works. And although PIP is not an ‘out of work’ payment, Ministers often link PIP cuts to getting ‘more disabled people into work’.

So, to play their game for a moment – how does PIP keep someone, like Dan, with a SCI stay in work?

Dan said: “PIP has been extremely valuable as although I have been able to work, it is not constant due to various health issues.

“PIP gives me security and has also paid for expensive disability adaptions and mobility aids I’m not able to get funding for.”

As Dan says sometimes, he had to take time off due to health issues and PIP has helped with this- giving him security.

Julie, who is a teacher, has had to limit her time at work to three days.

She said: “This is due to fatigue and pain, and means my wages are lower than before the accident.”

Due to her double-incontinence, Julie buys discreet pads and as she has a fear of an odour due to this, she uses a lot of perfume and deodorant.

She said: “At work, I need a clean area to use my catheters. I buy disinfectant wipes, bags, extra clothing and there is extra washing for soiled clothes.”

If her PIP was cut, Julie’s main worry is she wouldn’t be able to keep up the level of intimate and personal care to keep her clean, dry and odour-free to do her work.

So, what would be the mental health impact for someone like Julie, Janet and Dan if PIP, their disability benefit, was threatened and how could that also have an impact on their physical health?

Dr Jay Watts said: “This stress amplifies SCI-pain, weakens immunity and invites complications like pressure sores while reduced funds for physio or equipment accelerate physical decline, such as muscle loss, joint issues – the works.

“Worsening physical health then deepens mental health struggles, locking claimants in a vicious cycle where each fuels the other.”

In an open letter to the government, the SIA implored the government to tackle the societal problems affecting those with disabilities like SCI, rather than targeting individual claimants with cuts.

They pointed to five key areas:

Access to work: According to Disability Rights Uk (March 2024) there are over 37,000 unresolved applications with some people with disabilities waiting 254 working days for support

Social Care: The Health and Social Care Committee in October 2023 reported a £7 billion annual funding gap, leaving around 3.5 million with inadequate or no care.

Continuing Healthcare: In 2024 Age UK found 60 per cent of families face delays or refusals creating unacceptable regional inequalities.

Wheelchair Provision: An ITV investigation in 2024 reported waiting times of over two years for NHS-provided wheelchairs in some areas.

Accessible Transport: The Disabled Persons Transport Advisory Committee (DPTAC) found that in 2024 41 per cent of disabled passengers avoid public transport due to accessibility concerns.

The SIA, in their open letter, go on to say: “Cuts to welfare support will not only reduce the financial independence of people with SCI but will have serious and far-reaching consequences for their mental and physical health.

“Living with a SCI already places significant daily demands on individuals from managing complex care needs and navigating inaccessible environments to coping with chronic pain and isolation and psychological trauma.

Reductions in support will increase stress anxiety and depression and heighten the risk of secondary complications such as pressure ulcers and infections.”

Daily living for those with a SCI, like Julie, Janet and Dan, has been fraught with difficulties over the past fifteen years, with key societal services failing around them.

This has vastly increased the cost of living with a disability, with the financial load impacting on them mentally and in terms of their physical health.

Cutting PIP will make this bad situation even worse.

Julie said: “People’s independence and quality of life will be impacted and if they are no longer able to look after themselves, who else is going to do it? This is not a cut in funding it is a potential rise in healthcare costs.”

The SIA agree, saying those without the PIP lifeline, are under threat of losing:

• Access to care and equipment
• Their ability to stay in work or education
• Their independence, health, and in some cases, their homes

The SIA said: “By speaking out together, we can show MPs just how damaging these proposals are and how urgently they need to be opposed.”

There is a big rebellion of Labour MPs against this Bill. Can they succeed?

R.F.Hunt is a freelance journalist and columnist who has spinal cord injuries