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The government denied me disability benefit because I could “probably make a sandwich”

 I allegedly didn’t look tired enough at my assessment to convince them that my Multiple Sclerosis-induced fatigue is real.

It’s probably time for me to give up on Personal Independence Payment (PIP) – the non-means-tested benefit designed to support individuals with disabilities and long-term health conditions. I was deemed unentitled to PIP, despite having Multiple Sclerosis (MS), after a ten-month process, from initial application to the court appeal at which I represented myself, and lost.

The PIP benefit is renowned for being difficult to claim, and many applicants have waited much longer than I did, and faced extreme financial hardship as a result.

Which is why I contacted my local MP regarding my experience of the PIP assessment, and the impact it’s had on my life as a person with a serious health condition. My local MP, Andrew Turner, was very polite, and promptly secured a written response for me from his colleague, the Minister for Disabled People, Justin Tomlinson.

While most people might feel excited to receive a fancy envelope with the House of Commons portcullis printed on it, I felt like burying myself in the garden (if only I didn’t have muscle weakness and ridiculous fatigue, right?). Unfortunately, the capability you might have to bury yourself in the garden isn’t one of the questions on the PIP application form, though it may as well be. And, spoiler alert, the letter didn’t give me any hope of claiming PIP, nor did it provide me with a cure for my incurable disease.

I’m grateful that Turner passed on my query to the Minister. Turner included a more personal note to accompany Tomlinson’s generic response that, “clarified the government’s position on the introduction of Personal Independence Payment”.

However, at Jeremy Corbyn’s first PMQs in September 2015, my local MP quickly became infamous by asking the Prime Minister to intervene in a struggle the Isle of Wight Zoo had faced in trying to import a tiger to the UK. David Cameron laughed at the request, though considered it serious enough to do something about it (Simi now lives on the Isle of Wight).

The same day “Tigergate” went down, I was in Parliament, at a private reception hosted by the MS Society. My MP was invited to this reception, launching the MS: Enough campaign, which asks the government to revise the PIP benefit, though he didn’t attend.

While I’m all for animal rights, I’m saddened that the rights of disabled people are not taken seriously at present. And the response from Tomlinson only makes me sadder.

The letter from the House of Commons is, by and large, a copy and paste job that staunchly defends the PIP benefit. It justifies the abolition of Disability Living Allowance (DLA), the benefit that previously supported the disabled and sick, praises the newly-designed PIP assessment process and face-to-face tests carried out by contractors Atos, and hints at the so-called elimination of benefit fraud believed to have taken place.

However, as the public has heard again and again, though still not often enough in my opinion, individuals with genuine illnesses and disabilities are regularly being found ineligible for the benefit.

The MS Society evaluated this change from DLA to PIP and commented:

“Since the introduction of PIP, the proportion of people with MS receiving the highest rate of mobility support has fallen significantly. While under DLA, 94 per cent of claimants with MS received the higher rate of the mobility component of the benefits, so far this has only been awarded to 42 per cent of PIP claimants with MS.”

(Calculated from Department of Work and Pensions Statistics: Tables Disability Living Allowance – cases in payment Caseload [Thousands]: Main Disabling Condition by Mobility Award Type and Stat XPlore tables for PIP awards).

This is a huge shift in financial support for a high percentage of individuals, yet the response from the Minister for Disabled People fails to address this fact.

Instead of being a reply to my query, the letter is defensive, and a little condescending, as it states: “I can assure you that we have considered the needs of people with Multiple Sclerosis in developing the assessment.”

However, as the response has failed to consider my needs as a person with MS, I’m sceptical.

No one likes to appear weak, particularly when their baby is being scrutinised. I feel the exact same way when anyone denigrates the Kardashian name. The thing is, though, that the PIP benefit is already being called into question, and has been since its inception. Even the UN has launched an investigation into Britain’s current benefits system, and charities have long been outspoken about the negative effect PIP has had on the disabled.

But, presumably, in the eyes of the government, they all be hating. As Justin Tomlinson’s letter claims, PIP “provides an opportunity to better target support for disabled people and to enable them to lead full, active and independent lives.”

The PIP benefit could absolutely do this, if those with disabilities and long-term health conditions actually qualified for the benefit, and did so without having to ask for mandatory reconsiderations, or take their claims to appeal.

As Michelle Mitchell, chief executive of the MS Society, said of a survey carried out on those attempting to claim PIP:

“More than a third of those who have undergone face to face assessments reported that the experience had caused their MS to deteriorate or relapse. It’s clear that people with MS are having to navigate an unforgiving system of confusing and stressful processes to prove their entitlement to the disability benefits they need.”

A benefits system that negatively impacts on, and even worsens, the health of an individual, has not been designed with all illnesses in mind. Though, naturally, Justin Tomlinson would beg to differ:

“Eligibility . . . is based on the functional effects of an individual’s condition, rather than the condition itself. As two people with the same condition can be affected in different ways, there is no condition-based entitlement to Personal Independence Payment.”

Certainly a relief to have that explained to me.

Perhaps the letter makes some good points. For one, that “Disability Living Allowance had not been fundamentally reformed since it was introduced over 20 years ago and it lacked some of the basic checks and reviews that are integral to most other State-funded support.”

Maybe DLA was long overdue an overhaul – as great as the Nineties were, no-one wants to be stuck there forever.

Though Tomlinson’s (or his secretary’s) argument is ruined somewhat when the letter says, “Those with short-term conditions could find themselves being treated the same way as those with lifelong disabilities,” which is little more than tabloid propaganda, intent on convincing the general public that most people claiming benefits are scroungers.

I hate to break it you, but MS doesn’t get better. One of the worst symptoms, fatigue, makes me incapable of most of the descriptors for PIP at some point each day but, as my Atos assessor noted, I could probably make myself a sandwich, and I allegedly didn’t look tired enough at my assessment to convince her that #fatigueisreal.

If the letter’s claims are true, and the PIP “assessment is designed to treat all health conditions and impairments fairly”, then why is there no mention of fluctuating conditions? I specifically, and repeatedly, have questioned the fact that my Atos assessor didn’t take into account the length of time a person’s health should be considered for when they have a fluctuating condition like MS.

While there are guidelines for Atos to consider fluctuating conditions, these were ignored in both my assessment and at my appeal, and now (finally?) in my über-personal reply from Justin Tomlinson. As the Atos guidelines state, “Where an activity cannot be performed for part of a day it is deemed that it cannot be done at all on that day.” I can definitively tell you that this guideline is not always adhered to.

Receiving a letter from the Minister for Disabled People that doesn’t address my very real concerns about the PIP benefit, and completely ignores my personal account of how the process has impacted on my life, is frustrating. To quote Adele, “Hello, can you hear me?” Maybe, like in the video, Justin Tomlinson has no signal on his flip phone.

Photo: Getty
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I'm not going to be General Secretary, but the real fight to change Labour is only just beginning

If Labour gets serious about a new politics, imagine the possibilities.

For a second time, I was longlisted for the role of General Secretary of the Labour Party this week. For a second time, just as in 2011, I was eliminated in the first round. The final shortlist now consists of two veteran trade unionist women leaders, Jennie Formby of the Unite union and Christine Blower - formerly of the National Union of Teachers and the Socialist Party. I met them both yesterday at the interviews; I congratulate them, and look forward to hearing more about their ideas for Labour party renewal.

Last week in both the New Statesman and LabourList, I explained why I thought we needed a General Secretary “for the many”. I set out a manifesto of ideas to turn Labour into a twenty-first century campaigning movement, building on my experience with the Bernie Sanders campaign, Momentum, Crowdpac, 38 Degrees and other networked movements and platforms.

I called for a million-member recruitment drive, and the adoption of the new “big organising” techniques which combine digital and face-to-face campaigns, and have been pioneered by the Sanders movement, Momentum, Macron and the National Nurses Union in America. I set out the case for opening up the party machine in a radical but even-handed way, and shared ideas for building a deeper party democracy.

I noted innovations like the Taiwanese government’s use of online deliberation systems for surfacing differences, building consensus and finding practical policy solutions. Finally, I emphasised the importance of keeping Labour as a broad church, fostering more constructive internal discussions, and turning to face outward to the country. I gladly offer these renewing ideas to the next General Secretary of the party, and would be more than happy to team up with them.

Today I am launching, a new digital democracy platform for the Labour movement. It is inspired by experience from Taiwan, from Barcelona and beyond. The platform invites anyone to respond to others’ views and to add their own; then it starts to paint a visual picture of the different groupings within the movement and the relationships between them.

We have begun by asking a couple of simple questions: “What do we feel about the Labour party and movement? What’s good, and what’s more difficult?” Try it for yourself: the process is swift, fun and fascinating. Within a few days, we should have identified which viewpoints command the greatest support in the movement. We will report back regularly on this to the media.

The Labour movement is over 570,000 members, thousands of elected representatives, a dozen affiliated unions and millions of Labour voters. We may disagree on some things; but hopefully, we agree on far more. Labour Democracy is a new, independent and trustworthy platform for all of us to explore our differences more constructively, build common ground, and share ideas for the future. I believe Labour should be the political wing of the British people, as close to the 99 per cent as possible – and it will ultimately only be what we make of it together.

Yesterday I spoke over Skype with Audrey Tang, the hacker and Sunflower Movement leader who is now Digital Minister of Taiwan. Audrey is a transparent politician, so she has since posted a video of our conversation on YouTube. I recommend watching it if you are at all interested in the future of politics. It concludes with her reflections on my favourite Daoist principle, that true leadership leaves the people knowing that they have made change themselves.  

This General Secretary recruitment process has been troubled by significant irregularities, which I hope the party learns from. The story is considerably more complex and difficult than is generally understood. I have spent considerable time in the last week trying to shine greater light on the process in the media and social media, and encouraging the national executive committee, unions and politicians to run a more open and transparent process. I even started a petition to the NEC Officers group, calling for live-streamed debates among the candidates for this crucial and controversial party management role. I very much hope that there is no legal challenge.

Most importantly, the last week has exposed a significant fault line in Labour between the new left and the old left. When Jon Lansman of Momentum entered the contest against the “coronation candidate” Jennie Formby, many people read this as a fight between two factions of the old left. But Jon’s intent was always to open up a more genuine contest, and to encourage other candidates – particularly women – to come forward. Having played the role only he could play, he eventually withdrew with dignity. His public statements through this process have been reflective of the best of the new politics. And despite our very different political journeys, he kindly agreed to be one of my referees.

There has been plenty of the old transactional machine politics going on behind closed doors in the last couple of weeks. But out in the open, the new left movements and platforms have shown their strength and relevance. Momentum emailed all its members encouraging them to apply for the role. On Facebook Live, YouTube and podcasts like All The Best, the Novara Media network has been thoughtfully anatomising the contest and what it means for the future of the left. Even the controversial Skwawkbox blog finally agreed to cover my candidacy, and we had a constructive row about the leaked memo I wrote for Corbyn’s office back in December about how to win the next election using data, organising and every new tool in the box.

I am worried about the old left, because I feel it is stuck in a bunker, trapped in a paradigm of hierarchical power and control. The new left by contrast understands the power of networks to transform conversations and win hearts and minds.

The old left yanks at levers, and brokers influence through a politics of fear and incentives. But this tired game is of decreasing relevance in this day and age. The new left has the energy, the reach, the culture and the ideas to build a new common sense in this country, and to win decisive victory for Labour and progressives in the next general election – if the old left will partner with it. 

I am keen to help. So are many others. I hope we can start to have a more constructive and equal conversation in Labour soon. Otherwise an exodus may begin before long; and no-one wants that.

Paul Hilder is an expert on new politics and social change. He is a co-founder of Crowdpac, 38 Degrees and openDemocracy. He has played leadership roles at, Avaaz and Oxfam, and was a candidate for general secretary of Labour in 2011.