Introduction
The UK government has announced that the entire welfare system cost £313bn in 2024-25, an increase of £16bn over the previous twelve months. The BBC quotes the Office for Budget Responsibility as saying expenditure on health and disability benefits for working-age adults was about £50bn in 2024 and set to reach £75bn by 2030.
These are colossal figures. But, as with spending in other areas such as SEND and social care, these sums merely reflect the understanding between population and government dating back to the post-war Atlee goverment, and successive acts of parliament which have enabled and in some cases mandated the provision of these services to those who need them.
To reduce these costs but still (or so it claims) provide the support to the people who need it, the government is currently proposing to reduce and re-organise the benefit system.
This announcement has caused a lot of fear and uncertainty, and many MPs are up in arms. Of particular concern are the planned changes to Personal Independence Payment (PIP), a benefit designed to help people aged 16 and over with the extra financial costs associated with having a long-term health condition or disability. Newbury MP Lee Dillon has this to say about proposed PIP changes.
But what do people who currently receive benefits think about the proposals? We asked three local residents for their views.
Please see end of this article for further reference on available help and to a DWP consultation that closes on 30 June.
The first story
I have spina bifida and hydrocephalus (a build up of fluid in the brain), which means I’m a wheelchair user due to paralysis from the waist down. I am doubly incontinent and also now have osteomyelitis, a bone infection in my spine, which can be agony. Sometimes the pain is so bad I am unable to sit against the backrest of my wheelchair and can be bent over double. It can also cause me sleepless nights which makes it hard for me to have the energy to do anything the next day.
To look at me, you’d probably think my disability is purely physical. However it also affects short-term and working memory, planning and organisation, motivation, attention, navigating and maths. These combined difficulties make day-to-day life challenging and have a big impact on my mental health, especially as I live alone.
Despite my condition, my parents raised me to be as independent as possible. I have a degree in German Studies from Reading University. I worked from the age of 17 to 32 years old in a variety of admin and TA roles which I loved. I had a special wheelchair from Access to Work and car adaptations from Motability so I could drive myself to work.
What stopped me working about ten years ago was the onset of a chronic bone infection on my spine which I now have to live with. In fact, I continued working longer than was good for my health. I was frightened of stopping because I didn’t want to rely on benefits. I can’t drive anymore and really miss my working life. However, I’m now permanently on antibiotics and the infection causes me too much pain and makes me feel too unwell to work.
I volunteer when I can to keep busy and contribute to society but it’s hard for me to be somewhere at a specific time when my body isn’t cooperating. I often feel lonely at home on my own and scared that I rely 100% on benefits (Universal Credit and PIP).
PIP allows me to buy things I need that aren’t available on the NHS, like incontinence pads and a specialised wheelchair (which costs the same as a second-hand car). My PIP also enables me to pay for a cleaner and support workers, who help me cope with the basics of domestic life. They also help me shower if I’m in too much pain or am too weak. They also come with me to some appointments and to get shopping and prescriptions.
Before I started getting their support I was feeling very low; even suicidal. I use PIP to pay for therapy to help manage depression and anxiety. It feels like I’m constantly grieving for the person I used to be. Accessing this support wasn’t easy though, despite repeatedly telling my GP how depressed I was. Support was only put in place when, during a mental health crisis, an ambulance crew put in a safeguarding report to the council. I would recommend to anyone who feels they’re not being listened to by their GP to request to switch to a new one.
Now the government says it’s going to change the benefits system and I’m terrified of being back in that dark place physically and mentally unable to cope, and unable to get the support I need, because I no longer have enough PIP money to pay for it.
When the form asks if you can shower on your own, there isn’t a simple yes or no answer. I can, on a good day: but I only have a few good days a week.
The proposed PIP points criteria also don’t take household chores into consideration. I feel anxious about this too: disorder in my home makes it harder getting around in my wheelchair, causes me stress and makes me feel overwhelmed; which increases the likelihood of mental health crises. The knock-on effect on my physical health increases the chances of me needing medical treatment or hospital stays.
The government wants to make these cuts to save money. However, they’ll result in higher costs to the NHS and councils, as people will rely on them instead of using their PIP money to get the help they require to prevent a crisis.
The second story
Ever wondered what it’s like to be a person with schizophrenia?
To go to bed scared that you will be executed in the morning? To feel that everyone is talking about you? To have such low self-esteem that you think the world will be better off without you? To have negative thoughts that accuse you of doing something bad but you don’t know what? To think that people can hear your thoughts and communicate with you in your head? To be so depressed that you think you are the devil? And, sometimes, to have delusional thoughts that you are the second coming of Christ?
And then as well as dealing with all these mental health issues having physical health issues too, including diabetes and double incontinence (which can be a side-effect of psychiatric medication).
Despite these challenges I have worked since the age of 17. I started university at 21 but found it too overwhelming and switched to OU and completed an Open Degree. I also achieved a post-graduate OU diploma in Mental Health Science.
I worked for ten years in a hospitality company before starting a job in London. I enjoyed it but the commute and the stress meant I started to get migraines and lost confidence. My mental health really suffered.
I then switched to a different hospitality company and struggled for seven years having a migraine every day. But it took a long time to be diagnosed, as I have silent migraines where you get the brain disruption more than the headache. I also have eyesight problems and travel anxiety, plus medication-drowsiness.
This is all on top of the schizophrenia which means you can’t trust the people who care about you, or trust yourself to do the job.
I now work part time: this is all I can manage and the ESA benefits I receive only allow you to work 16 hours a week (the permitted work scheme), earning up to £195.50 per week. I volunteer as much as I can and attend community singing, craft and walking groups. These are as much a lifeline for anyone with mental health issues as mobility aids are for people with physical disabilities.
To add to it all, the difficulties navigating the complicated benefit system are highly stressful. You just get used to one set of rules and then they change. You feel scared that benefits will be taken away and that you will end up homeless or committing suicide (which does happen). This anxiety doesn’t help your ability to get back into work.
A lot of people want to work more but need support to get back into work and help when they’re struggling. It’s difficult to do a job that you don’t enjoy or don’t feel good at. Understanding employers, with mental-health training and employee helplines, are key. Support needs to be tailored to the individual employee.
In March 2025 Rachel Reeves suggested a new “Right to Try Guarantee” to help people who feel trapped in the benefits system. There is some information on the government website here. This policy which will ensure someone who is trying work or is on a pathway towards employment will never have to have an immediate benefit reassessment or award review. This sounds promising but what it means in practice isn’t clear.
A more flexible system that doesn’t cut off at 16 hours would be helpful, as would recognition that some weeks you might manage more and some weeks less. It’s also important that people can balance part-time work with therapeutic groups.
People with disabilities don’t ask to be disabled. We need understanding and support both in the workplace and in the home to be able to realise our potential.
The third story
I was diagnosed with a rare progressive genetic condition called adrenomyeloneuropathy in 2018 when I was 23. This condition mostly affects my mobility. Even while processing this life-changing news, it quickly became clear that I needed to get the right pieces of physical and financial support in place for the journey ahead whilst trying not to spiral.
Prior to my illness, I was working in our family business and studying IT and Computing at OU. I managed to complete my degree after my diagnosis, fitting the study time in while adapting to the changes in my life. I now do part-time admin work instead of the physical work I used to do outdoors.
I applied for PIP in late 2018, provided documentation and attended an in-person assessment. I was asked questions which leapfrogged over a lot of the difficulties a disabled person would face in everyday life, such as variations in pain and strength from one day to the next. It was obvious I was struggling even back then with getting around. However, my application was rejected.
It was an upsetting thing to face when many of my life’s plans were suddenly uprooted. I also felt like I’d been let down. I knew deep-down I desperately needed help. I should’ve taken it to a tribunal but at that time I had become despondent. Fortunately, a supportive locum doctor reassured me that I was deserving of help. I ended up applying again around a year later and this time was successful. I often wonder how others would have fared without such support.
PIP has been crucial in helping to cover the costs of things I need such as a wheelchair and hoist and adapting my vehicle with hand controls so that I can get out and about by myself – something most people usually take for granted.
Alongside PIP, I had to define a new state of “normal” in my life. This included finding medication that alleviated some of the side-effects, learning to drive with an adapted vehicle and getting my house partially altered so it was safer and easier to navigate. I was able to do this through a Disabled Facilities Grant from West Berkshire Council, which facilitated step-free access into my home and garden, and the fitting of a downstairs wet room. It was life-changing.
When I’m not working on the family business, I volunteer my IT services to local charities. I would like to be able to earn more money but it’s not easy to find work that fits my skill set and circumstances. I keep looking: but, in the meantime, I’m 100% dependent on PIP.
I feel lucky in some ways because I’ve not had as bad a time as many disabled people whose stories have appeared in the news. My GP has been steadfastly brilliant and approachable over the seven years since diagnosis. I’m able to work from home which is a life-saver, but in the future when I move jobs I know that ensuring it’s physically suitable will be a headache. Fortunately, accessibility has continued to move forward, as have people’s attitudes towards the disabled.
At the same time, I feel like the system is broken and that it’s only going to get worse. Targeting the most in-need group within society feels short-sighted and will only lead to more people getting trapped in an endless cycle of pain; that should never be an option. It’s also likely to lead to extra pressures on the NHS. I don’t think these cuts should go ahead. There has to be some other way to deal with the growing amount of people claiming disability benefits. Although I don’t have the answers, I do believe that conversation should begin at a high level within the government and parliament. Looking at the recent news, it seems that a number of MPs feel the same way…
Have your say
The Benefits and Work organisation’s website explains here how to have your say, including taking part in the DWP’s consultation by 30 June.
Help and advice
This is by no means an exhaustive list and we welcome suggestions from readers as to others which should be included: please email penny@pennypost.org.uk.
Your local councillor/s
Your local councillor/s will probably not be able to solve your issue themselves but they’ll be able to direct you to those who can and should also be able to help rattle cages thereafter.
- If you live in West Berkshire, click here.
- If you live in Oxfordshire, click here.
- If you live in Swindon, click here.
- If you live in Wiltshire, click here.
Organisations that help with physical disability
- Enrych Charity enrych.org.uk
- Shine Charity for Spina Bifida and Hydrocephalus. shinecharity.org
Organisations that help with returning to work or trying to maintain employment
- Charlie Waller organisation provides employer training in mental health issues charliewaller.org
- Ground Work Work Coaches groundwork.org.uk
- Penny Post provides work experience opportunities for adults with mental and/or physical barriers to entering the workplace pennypost.org.uk
- The Citizens Advice Service West Berks citizensadvicewestberkshire.org.uk
- The Job Centre Disability Employment Advisers directory.westberks.gov.uk/directory-search/details/?id=39480b62-d628-4534-9ff8-b195011276c1
- The Volunteer Centre West Berks volunteerwestberks.org.uk/
- Ways into Work waysintowork.com
Organisations that help with mental-health issues
- Doctors surgeries including Social Prescribers england.nhs.uk/personalisedcare/social-prescribing
- Educafe Community Cafe educafeuk.co.uk
- Eight bells for mental health eightbellsnewbury.co.uk
- Hillcroft House (CMHT) berkshirehealthcare.nhs.uk/our-sites/west-berkshire/hillcroft-house
- Recovery in Mind recoveryinmind.org
- Speen Community Cafe speencommunity.org
- Sport in Mind sportinmind.org
- Charlie’s Journey charlies-journey.co.uk/free-stuff
- The Corn Exchange Newbury Groups that support recovery through the arts cornexchangenew.com
- Waythrough – the mental health organisation waythrough.org.uk
