My experience of disability benefits assessments, and what needs to change

This week, experts by experience Jim Widdowson and Franklyn Jaffier spoke on the panel of an event in parliament highlighting the inadequacies of current disability benefits assessments, hosted by MP Marsha de Cordova alongside Z2K. In the following blog, Jim shares some of his experiences of navigating the social security system as a disabled person, laying clear the urgent need for reform.
L-R: Jim Widdowson, Marsha de Cordova MP, Franklyn Jaffier
L-R: Jim Widdowson, Marsha de Cordova MP, Franklyn Jaffier

My name is Jim Widdowson – I am a former builder and master decorator. I worked from the age of 14, I had to stop working after 35 years due to my health.

I am active in my community and several local groups – for example I have been involved within Camden Carers, as chair of Camden TRA and more recently got involved with Z2K’s policy and campaigns team to try and change things for the better. I have also helped friends who are going through the assessment process themselves.

I first applied for PIP (Personal Independent Payment) in 2016 and have been assessed multiple times since that initial paper assessment, from a face-to-face assessment to mandatory reconsideration, through to being awarded at tribunal, and another period of reassessment in 2020 where I was without this income again for several months.

My personal experience of assessments has been very distressing and left me feeling like I’m a parasite because I’m poor. These decisions should have been right the first time.

As a poor person who has come through difficult times in later life and is now being penalised for not having the economic means and personal skills to survive without support – I feel treated as a second or even third-class citizen. It is very sad and frustrating, especially in the UK, one of the wealthiest countries in the world.

My experience in early life

The year before I left a secondary modern school in 1965, it was discovered that I could not read and write. I was in a history class and because I was the last to finish copying the text from the blackboard, I was frequently sent to the headmaster’s office to be caned for being too slow or lazy.

One time when the headmaster was sick that the deputy head questioned the frequency of caning. I explained I had to copy words letter by letter and she was shocked that I could not read a simple book.

It was only after watching Bob Hoskin’s BBC programme “On the Move” that I was put in contact with a local NHS ward sister who taught me my basic ABCs. A year later, I was able to enrol at a local college, “The Working Men’s College” in Camden for a basic literacy class. I attended twice a week after work for 10 years, after which I could read phonetically very slowly the headlines of a newspaper (before that I would pretend that I was reading the paper to hide my shame and embarrassment, especially amongst peers).

However, I still could not write a letter alone, unless I had somebody to write it out for me, until I discovered the Franklin Electronic Language Master Dictionary and Thesaurus, in 1980, which allowed me to read the instructions of my work materials. This had its limitations as I could only type one word at a time and I would pronounce or speak it in the dictionary, so I could understand the word and the meaning. I now use “speech-to-text” software on my phone and computer which helps me to read and write electronically.

Physical health

From a very young age, I have suffered from eczema and a chronic condition where 75 per cent of my body was inflamed from scratching throughout the night whilst sleeping. I’d wake up in the morning with my bed sheets covered in blood and flaking skin, this made me prone to infections and was hospitalized many times throughout my school years. 

Suffering from this condition also affected my ability to work because of frequently needing time off work, depression and struggling to balance my disability with work.

In my early days of work, I suffered a fall which has given me spinal issues. I later learned in 2014 that as a result, I am at risk of cauda equina (which would leave me paralysed). These ongoing spinal issues limit my day-to-day mobility.

My first assessment

I first completed my PIP form in January (2016). The form was difficult for me to complete due to my dyslexia and everything having to be done online. The questions were closed and did not allow me to explain my own personal circumstances fully.

When I was called for a face-to-face assessment, I was originally given the option to travel 10 miles away to Chelmsford. I was suffering from spinal issues that meant that was too far to travel. I had to ask twice more before they gave me one 2 miles from my home.

My friend drove me to the assessment – it was in a building that felt like a deserted office – on the ground floor. The inside of the corridor was cold and clinical, and we sat waiting on a long corridor with nobody else there. When we got into the room, I can only describe the person in front of me as ‘not wanting to be there’. I felt from the start that she was not listening to me. The questions were cold with the assessor not interested in the issues I was suffering from and how they affect the quality of my life.

I attended the assessment with current medical information and the assessor refused to look at these medical documents. More irritatingly, I asked the assessor precisely what information and evidence she currently held and she refused to allow me to see them. I was left feeling like I was lying and didn’t know what I was talking about.

Appealing the decision

My initial application was denied so I lodged a MR appeal myself after reading about it online.

I was lucky that a friend from one of the community groups that I was involved with had informed me about Z2K and I can only thank the staff for their hard work and commitment to supporting individuals like myself. After I was supported to get legal representation at the tribunal the decision was overturned and I was awarded PIP in December 2017.

Renewing PIP

After this time, I submitted the PIP application with a new set of evidence in December 2019 and returned the assessment form by 7 January 2020, but had heard nothing by March, so contacted the DWP they told me I’d have a telephone assessment before the end of April. This did not happen,

So, I contacted the DWP again on Monday and was told that it could be a further six to eight weeks before he would have a face-to-face assessment.

By this time, I was struggling and becoming very anxious and depressed with life in general.

I hadn’t been receiving PIP since January, and by May I was struggling with bills and was accumulating debts with my energy provider. My estate manager had contacted me to inform me that I was in arrears with my rent. She was sympathetic and understanding of my situation, but my energy suppliers were not so sympathetic.

It wasn’t until later in May that the DWP made a decision to have my PIP ongoing for 10 years, and the decision was backdated 4 months. This was a real relief. But I shouldn’t have had to go through all that.

What needs to change

By now from my experience, I know there is a need for a more personal and inclusive process of assessing individuals.

The model of a single individual assessing all disabilities or illnesses is a flawed. A lone individual cannot have the knowledge and experience to cover all the dynamics and needs of claimants with complex illnesses.

I also feel that the assessment process was organized in a manner to entrap individuals to fail the assessment. The need for profit of the companies, commissioned by DWP, comes first, which in my experience means the assessors have a bias – I felt they already had their minds up without full medical evidence.

I think that the following changes would improve the process of assessment,

1.    More open (rather than closed) questions in the initial assessment

2.    Medical evidence is considered fully

3.    A panel of experts (not a profit-making company) more similar to the tribunals – made up of occupational health professionals and medical practitioners (cardiologist, neurologist) where all evidence can be seen by all professionals to help find a better plan of support

After speaking to others who have been through these assessments too – I have heard tragic stories that have made me more aware that there needs to be a change. What is clear is that the system doesn’t work and needs to change so others don’t have to go through what I did.

The views in this blog are those of the author, and do not necessarily reflect Z2K’s views.

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From left to right: Jim Widdowson, Marsha de Cordova MP, Franklyn Jaffier
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My experience of disability benefits assessments, and what needs to change

This week, experts by experience Jim Widdowson and Franklyn Jaffier spoke on the panel of an event in parliament highlighting the inadequacies of current disability benefits assessments, hosted by MP Marsha de Cordova alongside Z2K.

In the following blog, Jim shares some of his experiences of navigating the social security system as a disabled person, laying clear the urgent need for reform.

Read More »