An open letter to the Secretary of State for Work and Pensions and the Senior Coroner for Inner North London, from Joe Reynolds.
“I don’t want people to go away thinking we have stopped our support for people with disabilities, far from it…” – Thérèse Coffey, MP
“…Far from it.” – Peter Schofield CB, Civil Servant
I am aware that it is protocol to issue a Prevention of Future Death (PFD) post-mortem. These extreme circumstances force me to break tradition. I would like to explain, pre-mortem, why welfare conditionality in the time of Coronavirus will lead to my own death. I hope then, Secretary of State, you will understand your responsibility for the lives of millions of others, and so act accordingly.
I really did not want to do this. I thought that it would be unnecessary to repeatedly explain how I, a homeless suicidal epileptic, need support from the UK government. After five months of waiting, from the first patient of Covid-19 in November 2019 to the Pandemic of 2020, my application for support was finally rejected on the March 30th.
Considering it can take 10 weeks for a mandatory reconsideration notice, I have to declare with all sadness that I do not meet the conditions for survival demanded by the Department for Work and Pensions. I do not take it personally, 90,000 others are waiting for a decision based on this appeal process and around 68,000 of them, statistically, will win at appeal.
This process is based on conditionality. It is the mechanism by which human behaviours can be changed or controlled for the purpose of making people acceptable for housing and employment, typically used by the state in times of recession, and with the added threat of financial penalty (sanction).
This system is an incredibly burdensome, costly and wildly ineffective, and so in the pursuit of targets, efficiency and market freedoms, part of the process was outsourced. Atos is a company that primarily deals with communications and information technologies, not welfare and disability care, and yet is one of the companies awarded billions of pounds of public money for this purpose.
After 10 weeks of looking through six documents, Atos invited me for an interview with a healthcare professional. On the letter I was informed that I had to go to Surrey, two hours from where I lived. I had to travel through rush hour and was late from having to stop on numerous occasions because of my epilepsy. I called Atos to inform them of this.
I was having focal seizures. I was hungry. Atos was already aware of how difficult it is for me to take transportation. I was forced to do this alone as I had no other choice.
I made it to the reception and waited for my healthcare professional in a completely empty waiting room. “Hold on,” the reception says looking at my details. “You live in Islington, why did you come all the way to Surrey when there is a centre five minutes from where you live?”
I tell him I didn’t know that and after two-and-a-half months of waiting I would go anywhere just to complete my disability claim.
I wait. On the wall opposite me were informational posters on the wall like they have in government agencies. One poster warned about the use of audio and video recording during the consultation. It was only permissible if you could record the session on x2 CD’s simultaneously without using a computer, giving the second to the DWP.
I turn off my recording device and make the transformation back from journalist to the hopeless, homeless, suicidal epileptic I struggle with everyday. I would never be able to use the evidence as it would implicate me some form of criminal act. I am invited into a small room and meet my healthcare professional, a paramedic employed by Atos to assess my needs.
I try to gather myself and tell the paramedic I am pleased he is there because I am afraid that I will have a seizure. I try to control my breathing and anxiety surrounding losing consciousness in a public place. My original statement said;
Using public transport with flashing lights in underground trains and crowded buses as well as banks and supermarkets is increasingly hard and in the peek of a seizure impossible. This puts a significant strain on my life as these activities are necessary.
This was ignored in the report made by the paramedic, who noted;
You travelled to and attended your assessment alone and coped well throughout. You had appropriate interaction and you engaged well with adequate rapport and eye contact. You had a normal manor, you behaved normally and you were not restless or withdrawn. You were not anxious, agitated or tense.
The Paramedic asked me a range of questions, some relating to my condition, some bordering on the obscure. “Do you have any hobbies?” he asks.
“Do you eat every day?”
“No,” I reply, “I skip meals regularly.”
“Why did you leave university?” He enquires.
“The university defrauded the government for millions in funding, by lying about how many students completed their degrees…” I reply “… that was 12 years ago…”
“And the suicide?” He pauses, “I know it’s a tough question but… are you thinking about it now?”
“Yes,” I reply. I can feel the anxiety again, the panicking confusion as a familiar feeling starts to come back, a feeling I have known for 13 years. I push it back.
“Listen,” I tell the paramedic. “I have been told by three healthcare professionals that I am going to die if I do not take medication. I am suicidal, so I know that the medication can increase that risk. Either I die or I die, it’s causing a fair bit of anxiety.”
“Well,” the Paramedic says, “just between you and me, if you do not take the medication, the DWP will think that you are doing OK and you may not get the support.”
In the report, the Department for Work and Pensions indeed took my lack of support as a sign of independence, noting;
“You are also not prescribed any medication and you do not receive any specialist input. I have decided you can manage these activities unaided.”
This decision goes against the recommendations by the neurologist who diagnosed me, stating I required 1:1 attendance in cooking and bathing as I pose a significant risk to myself and others. I have seizures in my sleep, meaning I do not sleep properly, and so put myself at greater risk the next day because a lack of sleep can trigger epileptic seizures.
The Department for Work and Pensions disagrees;
Whilst I also acknowledge your diagnosis of epilepsy, you reported seizures are commonly at night when you are sleeping, meaning there would be no risk… You also indicated you (sometimes) have a warning five minutes prior to a seizure which would mitigate your risk and give you enough time to make yourself safe.
This also puts in dispute a witness testimony supplied to the DWP, describing how I fell down the stairs following a seizure, almost seven years ago.
“Why did you not ask for help before?” the paramedic asks.
“The last time I asked for help from the UK government for my suicide I had to wait three months to see someone. When I last applied for disability benefit nine years ago, my housing benefit was so badly delayed that I was eventually kicked out of my home. That was the last time I had a stable tenancy and you need an address for a GP.
“Would you ask for help again? How long until I hear from the DWP about my claim?”
“In five to six weeks,” the Paramedic replies. 10 days later, face-to-face meetings were suspended, following the coronavirus outbreak.
“I wonder — I am just reflecting on it,” Dr Ben Spencer asks Thérèse Coffey, the Secretary of State for Work and Pensions, “whether it might be worth, in terms of efficiency, having a form of amnesty over these appeals. It’s going to be complex to do justice fairly in this situation.”
The former NHS doctor and Conservative MP was breaking the glass ceiling with a toothpick, sensitively asking a member of his own party to suspend welfare conditionality for the disabled during the Coronavirus crisis. “I wonder whether we should put that on hold, reinstate the benefits and pick this up in the future once we are through the crisis?”
“We are not in a position,” the Secretary of State replies, “to just agree 100% any application for PIP or ESA.” Aware that the majority of those who appeal are later awarded after taking their case to a tribunal, Coffey started to promote ideas that sounded like they came from a think tank she is part of, the Free Enterprise Group.
The group was formed after the economic crash of 2008, to promote capitalism and the free market in the wake of criticism towards unconditional bail-out of the banking sector.
“… and that’s why we have a new directorate about service excellence …” she informed the doctor, avoiding answering the question. “Ultimately, we are still on that journey of trying to improve decision making.”
The civil servant speaks up. “It is trying to get it right the first time,” he says, accidentally referring to a report by Citizens Advice in 2012, that criticised the DWP for severe inaccuracies in it’s assessment of the disabled, “We are learning as we do it … we are learning as we go along.” he tells the doctor.
His comments reflected the wider government ‘strategy’ throughout this crisis, not a preventative method but one of reaction and profit creation.
“We are trying to make the whole process better for customers.” Peter Schofield CB finishes. This civil servant was the former director-general for finance at the DWP and before then he worked at the Shareholder Executive (ShEx), a body responsible for managing the shares of companies and banks taken into public ownership, following the crash of 2008.
One of those companies was Working Links, an organisation that sanctioned more people than it put into work. The key is time, the longer you wait, the more likely the welfare applicant, or customer in this case, will find alternative means of survival. That can be anything from employment to crime, destitution or suicide.
“It’s almost a judgement call,” the Secretary of State reflects. “These are still part of our service excellence programme.”
“Bearing in mind our medical workforce,” Dr Spencer cautiously starts, “With the best will in the world, they are not going to pick up and start writing PIP assessment letters at the moment. They are focusing 100% on coronavirus. How can you be super-confident that this process is going to work properly”
“We are trying lots of new things to cut the process down,” the civil servant replies, “but all with a focus on speeding through those new PIP claims and to get them through to payment.”
Five days after the DWP was means-tested by the Work and Pensions Committee, and 19 days after the World Health Organisation declared a pandemic, I received a letter.
I have looked at your claim and decided I cannot award you Personal Independence Payment. Thank you for claiming Personal Independence Payment. If you disagree with our decision, you can ask us to look at it again. Your total score for the Daily Living part of PIP is 0 points. I cannot consider awarding PIP for any help.
I write a letter back, something they call a mandatory reconsideration notice;
Thank you for your letter of rejection concerning my claim for Personal Independence Payment. I have decided that at the end of a 20 week process, which also happens to be in the middle of a pandemic that is already asphyxiating stock markets and healthcare systems, I am left curiously with what I started with.
Suicide. With great sadness I must inform you that I do not meet the conditions for survival that the Department for Work and Pensions has placed upon me. My epilepsy has not been taken seriously by those with the responsibility to help me, despite the fact that I have used every last part of myself to try to keep alive.
My only recourse is to supply the advice of a medical professional and, right now, that is an impossibility. Your total score for the welfare part of the DWP is 0 points. I cannot consider your future as a valid government agency. The Department for Work and Pensions must be abolished immediately and replaced with an unconditional mechanism of support.
Welfare based on well-being, not conditionality. If you are confused, you can refer to the Care Act of 2014 which states, “well-being is a broad concept, and it is described as relating to the following areas in particular: Personal dignity (0 points), health and emotional well-being (0 Points), protection from abuse and neglect (0 points), control by the individual over day to day life (0 points)…
Do not fear, I am a reasonable person. You can beg forgiveness and for your own employment under a mandatory reconsideration notice. I will warn you however, that after a decade of austerity and two decades of private participation in welfare, others in this country will not be so reasonable.
We still remember the failures of care and responsibility that lead to the deaths of Jodey Whiting, mother of nine, Michael O’Sullivan, a 60-year-old with a heart condition forced back into work, David Baar, a twenty eight year old who died with just 36p in his bank account. We scream hungry for Errol Graham, who was just 28.5kg when he was found dead.
This is a notice to inform you that you are sending bodies to the morgue at a time of an international health crisis. This is a call for a Prevention of Future Death because the Department for Work and Pensions is not fit for work. Now you understand your responsibilities, Secretary of State, there is no alternative.
We will not die quietly.
~ Joe Reynolds
All photos are of central London on the ‘first day’ of lock-down on March 17th, by Joe Reynolds.