Cystic fibrosis sufferer refused PIP – the Conservative bureaucratic wall and systematic dismantling of social security


A disabled person suffering from cystic fibrosis, who struggles breathing because his lungs function at as low as 31 per cent capacity, has been told that benefits he receives in order to help pay with his healthcare costs will be stopped.

Peter Trengove nearly died three days after he was born because of the illness, which makes it difficult for sufferers to breathe and digest food.

Cystic fibrosis also claimed the life of Peter’s older brother when he was just six years old.

Peter had been in receipt of disability living allowance (DLA) in order to help to pay care costs, but DLA is currently being replaced by personal independence payments (PIP) as the Department for Work and Pensions (DWP) believes it is “outdated” and “unsustainable”.

Peter received notice on New Year’s Eve that he would have to attend an assessment as part of his PIP application, with forms on how cystic fibrosis affects his day-to-day life taking three hours to fill out.

On Saturday, Peter was informed that his DLA will end next month and that he will not be awarded PIP.

He told the Warrington Guardian: “According to the unqualified professionals at the DWP, cystic fibrosis isn’t a disability and has no effect on the sufferer at all.

“I was informed by the assessor that the decision would not be based on the assessment but on the written evidence given by my consultant – this was something I was relieved about because the assessor saw me on a good day.

“The decision cannot be based on one hour spent with a cystic fibrosis patient, which is why the decision makers should be focussing more on the evidence given by the consultant.

“The assessor claimed I can walk 200m – however no physical evidence was given that I can do this and the assumption was made based on me walking from the waiting room to the assessor’s office, which is less than 5m.”

Peter believes his assessor also disregarded evidence presented from his doctors, including medical notes on a chest infection in October that took three months to treat and a further month to recover from.

Peter had used his DLA for health costs including prescriptions, travel to specialists clinics a 40-mile round trip away and the cost of a personal trainer who helps to keep his lungs working as well as possible.

He is now appealing the decision, but says his health has been affected by the PIP assessment process and the subsequent cut in payments.

Peter added: “Since the assessment I’ve had bad days, which mainly includes not leaving my house unless I really have to in fear of exposure to illness, plus I’ve had no motivation.

People with cystic fibrosis are very prone to chest infections that lead to pneumonia. Catching a cold can put someone with this condition at substantial risk of becoming very seriously ill.

He continued: “I even have to force myself to get ready to go to the gym because I know I’ll basically become ill again if I don’t go.

“Whether I will be motivated tomorrow with the weight of my PIP application outcome lying heavy on my shoulders is a question yet to be answered.

“The only hope I have at present is that by appealing the decision, this will result in the answer I had hoped for on this occasion.”

As Peter points out, the assessment and appeal process for disability related support is very stressful and intrusive, as is the loss of income when the claim is turned down. Stress tends to exacerbate illness.

A spokesman for the DWP said: “Decisions for PIP are made following consideration of all the information provided by the claimant, including supporting evidence from their GP or medical specialist.

Anyone that disagrees with a decision can ask us to look at it again and if they’re still unhappy with it they can appeal to an independent tribunal.”

When someone is very ill, dealing with day to day living and personal care becomes very difficult. The additional strain of facing a bureaucratic wall of assessments, mandatory reviews and tribunals is having adverse consequences on people who have health vulnerabilities as it is.  

I have been through assessment, tribunal and within three months of winning my appeal, a reassessment. The whole process, which took many months, exacerbated my illness substantially, hastening its progression. I have lupus. I also know only too well how having a limited lung capacity impacts on your day to day living, as mine is currently at 40%. 

The Conservatives claim that their recent authoritarian re-writing of the law, to exclude some categories of support for some kinds of disability, is to ensure that those in “most need” receive support. That is not happening. The category of “most in need” is being redefined to exclude more and more people who are struggling meet their basic living needs and cope with their disability. 

Perversely, the government claims that cutting disability support “incentivises” disabled people into work. Sanctions and cuts are described by Conservative ministers as “help” and “support” – a breathtakingly Orwellian doublespeak tactic.

Yet ESA benefit is only awarded to people that doctors and assessors acting on behalf of the state have deemed unfit for work. The recent re-titling of the minister for disabled people’s role to “Minister for disabled people, health and work indicates plainly that the government intends to continue to coerce people who have previously been exempted from work by both the state and by people’s doctors into work. 

The government have refused to accept that there is a well established correlation between their draconian cuts to disability support and severe psychological distress, material hardship, harm and sometimes, premature death

The commonly associated deterioration in people’s already poor health because of the unrelenting strain of facing the bureacratic wall – politically designed to ensure and enforce cuts to disabled people’s lifeline support provision and save costs on spending – is adding additional strain and cost to our NHS. It’s a false economy. As people’s health deteriorates further, they are more likely to need more social care support, too.

The majority of people who become ill and disabled have worked, contributed tax and national insurance, which was in part meant to contribute to social safety nets for people who may, through no fault of their own, face hardships because they became ill or had an accident which resulting in disability.  

The money we pay for publicly funded provisions and services is not the government’s money to cut and re-allocate to millionaires in the form of substantial tax cuts. Against the backdrop of the Conservative ideologically driven, neoliberal austerity programme, which disproportionately targeted disabled people, cuts to lifeline benefits were offset with a tax cut for millionaires, who gained £107, 000 each per year. 

Disabled people who are struggling to meet the cost of their basic survival needs are awarded on average £6,000 per year, excluding a PIP award, if they somehow manage to get through the repressive bureaucratic wall composed of the work capability assessment, mandatory review, (without any income), and the appeal process.

This is what David Cameron meant when he attacked what he dubbed a “culture of entitlement.” It means the systematic dismantling of our welfare state, a cut at a time. It means the dismantling of other social gains that we made following the postwar settlement, such as the NHS, social housing and legal aid. It means a regressive and oppressive government that deliberately fails to observe the basic human rights of some of our most vulnerable citizens.

In one of the wealthiest so-called democracies in the world, we have an authoritarian government that is imposed draconian policies which are all about punishment and taking money from our poorest citizens, causing them severe material hardship, physical harm and lasting psychological damage.

That is not a decent, civilised or remotely democratic thing to do.


I don’t make any money from my work. I am disabled because of illness and have a very limited income. Successive Conservative chancellors have left me in increasing poverty. But you can help by making a donation to help me continue to research and write informative, insightful and independent articles, and to provide support to others. The smallest amount is much appreciated – thank you. 

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13 thoughts on “Cystic fibrosis sufferer refused PIP – the Conservative bureaucratic wall and systematic dismantling of social security

      1. Shouldn’t he be getting free prescriptions? If, or when I start to work I will continue to get free prescriptions because I am Type 2 diabetic, my condition is nowhere near as serious as this persons condition, or even your illness Kitty!!!

        Liked by 1 person

  1. and i suppose we all know that the tories must bribe so called health professionals to do this dirty work
    i prefer the term blood money. money for doing no good.
    do you know we even discovered a nursing PROFESSOR from nottingham travelling to wales to do this work.
    her pay ? 90k per annum working for maximus. as i say, blood money..shame on all of them.

    Liked by 6 people

  2. I am currently fight a decision to remove housing benefit from May 2016, the Universal Credit staff did not bother to check my information and situation before cutting off the money without warning.

    They based their decision by being negligent and not checking or asking. Be aware you might be able to pull them up on this as a get out if they have fouled up.

    They are adamant they applied the law, but to something they never bothered to check.

    Liked by 1 person

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