Taking the 'PIP' (Part 3) Relapse

Relapse. There it is. In black and white. After nearly three years of slow progress towards a semblance of stability, in March I found myself referred to the Single Point of Access by my GP, following what felt like a major setback.

I'm avoiding the term 'breakdown' because I know I have been much lower, for longer, in the past. However, given that I had been contemplating ways to go back to paid work, this time last year, to be faced with the full extent of my regression and loss of emotional stability, felt like a slap in the face.

The major trigger? The ongoing uncertainty over my financial stability and the emotional impact of going through a PIP appeals process which is destined to end in a court hearing where I have to prove that the impact of my emotional and mental instability significantly impacts my daily life. I returned my request for a tribunal on 10th January 2017 and am still awaiting a hearing date. That along with the hardship caused by losing two thirds of my income in one fell swoop has had a devastating impact on my ability to manage the symptoms of my condition. I became exhausted with the effort of trying to manage my day to day life. Something the PIP payments are supposed to help with. Eventually, I became so exhausted I started to press my self destruct button, repeating self defeating behaviours from the past, because it seemed that no matter how hard I worked to maintain my recovery it seemed as if I were the mole in the arcade game and circumstances, particularly the system designed to support me and which I had paid into for most of my life, was wielding the large mallet which was constantly crashing me down, every time I managed to push myself up again.

Meanwhile, a decision on my PIP payments, which replaced the DLA is still awaited. The process has now lasted nearly ten months. I have never received any mobility payments, but the additional daily care component had allowed me to continue to work on a part time basis for nearly two years more than I would otherwise have been able to following my initial diagnosis. I am in 'limbo' unable to move forward towards paid employment, paralysed by a complex mix of stigma, over qualification, lack of transport options and the lack of confidence caused by my experiences of employers and interviews over the past five years. Who wants to take a chance on someone with my mental health history?

This situation became untenable, the skills which were helping me to maintain a level of stability were essentially rendered useless as I was overwhelmed by the complexities of a situation beyond my control.

The good news is that in the time since my last referral into Mental Health Services, there has been a recognition that for someone like me, a hospital ward is not a positive environment, nor is it somewhere that I seek to be to find safety. I am currently under the care of the Home Treatment Team (HTT), but needed acute care in the initial crisis period. I was offered a place on the Acute Therapy Service (ATS), an intensive six day placement which required me to travel to a local unit where I spent time undergoing a booster for mindfulness and Dialectical Behaviour Therapy (DBT) Distress Tolerance, Emotion Regulation, in addition to Occupational Therapy approaches, Mentalisation, Holistic therapies (I opted for head, shoulders and neck massage) and art therapy.

As with DBT, the success of the ATS requires a high degree of motivation towards self management. Having benefited from the 18 month DBT programme I found that I was able to refresh some critical skills I had lost over time, as well as having a fresh approach from an OT perspective to 'regrouping'. Throughout there was a recognition that during my stay some 'magic bullet' which would have removed all the factors in my life that ground me down, was impossible. There is no such thing. What I was provided with was space to let go of the pressure to keep going regardless of my ability to do so, space to remind myself about the importance of self care and self compassion and most importantly an effective structure in which to begin to regain my sleep routines. As with the main DBT programme I left with a reminder of what I could manage, my limits, a structure in which to regain my emotional stability and most of all, a belief that I could cope.

The uncertainty around the PIP has not changed, in addition there is destabilising atmosphere of an election campaign which offers little hope of respite of those affected by 'Welfare Reforms' - I am accepting that this environment is too strong for me to fight on my own. Above all, the injustice inherent in the PIP assessment process is something which I cannot win against on my own. I must stop 'tilting at windmills' and use what energy I have to survive and hope that I can regain what has been lost through this period of relapse. Above all, I am reminded that recovery is not a straight line.

Taking the 'PIP'

Two weeks notice then I lose a third of my welfare payments. It is the promised one third cut to disability payments as a result of the ongoing welfare reforms. Those who have followed this blog for any length of time will be aware that the first half of this year was dominated by the Work Capability Assessment (WCA) to decide whether I would be placed on the 'work' or 'support' version of Employment Support Allowance (ESA). The work based group received 33% less income and claimants are required to adhere to a punitive and cruel regime of seeking work and attending work related activity - as they have been deemed 'fit for work'. If they fail to adhere to arbitrary rules such as not being on time for appointments at the Job Centre ('on time' means even five minutes late, regardless of the circumstances) results in immediate 'sanction' - or suspension of payment of ESA ie the person being sanctioned has no income at all (it is estimated that thousands of individuals have died as a result of ill health following being assessed as 'fit for work' and nearly 60 suicides were attributed to the impact of the WCA and sanctions in the past three years).

Due to a deterioration in my mental health as a result of the pressures and anxieties around the inhuman WCA I was referred by my GP for assessment by the local Mental Health Services crisis team. Due to my presentation and the evidence presented from my medical records I was placed in the support group. This took place between February and July 2016.

By August I was beginning to stabilise and return to my recovery path, when I received a form to apply for Personal Independence Payments (PIP) as my Disability Living Allowance (DLA) was due to run out. Once again into the damaging cycle of trying to present the most accurate evidence of my condition and how it affects me on a day to day basis. To help those who are confused by this array of different 'benefits'. ESA is usually based on your national insurance contributions, and is a basic income. DLA was a payment (even if you were working) which was designed to help people meet the additional costs related to their disability. For me, it helped me remain in work for two years but on part time hours. It also meant I could maintain the cost of keeping a car which also enabled me to remain in work. PIP is designed to replace DLA.

When assessed for the WCA I was assessed by someone who clearly had training and experience of working within Mental Health Services. The questions related to my condition and the difficulties I faced in trying to get appropriate work. Although the process was highly distressing and resulted in a referral to crisis care, myself and my friend, who accompanied me felt the assessor did her best within a flawed system.

The PIP assessment was carried out by someone who by his own admission knew 'nothing about mental illness'. In particular when I asked him about his knowledge of mood disorders such as Bipolar and Personality Disorders and the similarity, differences and impact of their symptoms again he admitted his ignorance. But in the end it didn't matter because a PIP assessor's ability to deviate from the onscreen form which clearly is much more limited than necessary particularly in regard mental health conditions, is negligible. On the day of the assessment I had reached the end of a week long period during which I had suffered three or more severe migraine attacks due to the level of anxiety triggered by my receipt of the letter informing me of the date of the assessment. Given the levels of distress and relapse encountered earlier in the year I struggled to manage my worst anxiety symptoms. This included disrupted sleep through several nights of nausea and vomiting. Due to the threats of immediate loss of DLA payments if I missed the assessment and having used up my one opportunity to rearrange the original date so that my friend could accompany me, I had no option but to take all of the medication I needed to be able to at least function on a basic level.

Unlike the WCA assessment during which I was tearful and extremely distressed, I appeared, no doubt like a zombie in the PIP assessment. Despite myself and my friend explaining the impact of the WCA assessment on my mental health and my current consumption of beta blockers and migraine meds to manage anxiety symptoms, I was informed in the decision letter that he assessed me as 'presenting no visible signs of anxiety'!

I provided exactly the same level and quality of evidence in my written form as well as my answers to his questions, as the WCA interview, yet the outcome was not only vastly different, it actually resulted in an assessment of 'no need assessed'. This despite my explanation of the importance of being able to maintain access to my own transport in order to maintain friendships and stop isolation, as well as helping me to perhaps make money from tutoring when I felt well enough, as well as my concerns about creeping obesity as a result of my deteriorating emotional stability. I was unable to complete the cognition tests as a result of the migraine and beta blocker medication slowing my thought processes and as a result me becoming tearful and distressed because I couldn't complete a simple maths test. Instead of noting this down, he informed me that he had decided not to report my difficulties as it meant he would have to inform DVLA and could result in a loss of my driving licence. I accepted this at face value, but on reflection, this was a distortion of my presentation during the assessment and therefore, proved detrimental to my PIP application.

(Below is a graphic from information for candidates for PIP assessor roles published by Capita one of the larger private companies currently contracted to carry out assessments)

Initially, given that I have now spent the best part of a year dealing with the DWP assessing my mental health, a process which has severely disrupted recovery from long term mental health issues, I could not face anymore dealings with them. However, having found out the result and read the decision letter an NHS support worker has encouraged to go through the appeals process. This will be slow, probably take up to a year to complete and meantime I have to reduce my budget to an even lower level. I am in a better position than most, in some ways, as having a mortgage means that my monthly housing costs are lower than those who rent. However, ironically, if I were renting, I would have my house paid for entirely, so would not have to find monthly housing costs out of my much reduced income.

I have lost my car, which means that my access to paid work which will allow me to continue to manage my symptoms is even more limited as a result of this decision.

Given that I struggle on a daily basis to maintain a level of emotional stability, the uncertainty of nearly a year with my income being threatened has been unhelpful to say the least. Most of all, I am weary of the struggle. Yet, I know that having been able to work for nearly forty years, I have more resources than some. I have supportive family and friends who do not belittle me or ignore my value, because I have been struggling with this condition. I am aware that such understanding is a small oasis in a desert devoid of compassion or care for those we used to consider our neighbours. I have observed as the country I live in has descended into a morass of fear induced bigotry and ignorance of the needs and lives of others, particularly those in need.

It is painful to realise that the impact of Brexit has not caused much of a ripple in our wider media debate until people's own pockets and personal comfort was threatened by price rises to Marmite and Pot Noodle. My biggest fear was the loss of a protector bigger than the current cabinet and previous cabinet who have been prepared to impose austerity on the most vulnerable in our nation, in the name of paying down the deficit. Something, they have failed singularly to do. Without the EU there is nothing to stop the current government from pushing through the abolition of the Human Rights Act so that they cannot be challenged legally over erosion of disability rights.

Brexit was always more complex than the puerile sound bite farago which was foisted upon us as a nation. Unfortunately, some of those who hope that leaving the EU behind will solve all problems of poverty and inequality in this country will be sorely disappointed. The government voted into power in 2010 have deliberately targeted disabled people, over those of pension age, £9,000,000,000,000 is the current state pensions and other age related benefits bill. IDS stated in a recent documentary that it was a deliberate political and electoral decision. Think about that, we have voted twice for a government which has deliberately and carefully CHOSEN to take money from the most vulnerable in order to obtain and retain power. I know I need to be cynical, I know I need a thicker skin, but it actively hurts to think that the majority of fellow voters have also CHOSEN to vote for self preservation over collective good and battling the winds of economic and national storms together.

In order to manage to cope with the prevailing mood and rhetoric from the UK and the USA I have to retreat into box sets and pray for a change of heart in our government and nation.

I know I have written a long piece, and I am grateful if you have read this far. It is a way of explaining my lack of posts over the past year. I hope that it gives some small window into the reality of so many people. Not everyone has the platform or skills to be able to articulate the impact of PIP and WCA. Very easy for some newspapers and political party to dismiss. All I ask is for someone to speak up on our behalf. Surely our country is better than this?

The WCA, my Recovery and Me

I've had a substantial period of relative stability. As with any path to long term recovery, I have had ups and downs as well as adjusting the direction of my life to managing my condition on a daily basis. Compared to three years ago, I have been doing really well, until...

Life happens to us all, bereavements, the day to day grind to manage income over outgoings. In addition I have to manage my reactions emotionally. It helps if I can plan my life and build routines to support my physical as well as my emotional health. Those are the skills I have had to learn through intensive DBT (Dialectical Behaviour Therapy)and those are the skills which have helped me manage the cycles of despair, self destructive behaviour and recovery. It was going well, until...

One of the most difficult aspects of life to manage when I am emotionally unstable is my finances. It is essential that I don't restart the spiral into debt which marked most of my adult life. I need to be able plan and to know well in advance if I am likely to lose any income so I can make the necessary adjustments. Perhaps, emotionally, I need more notice than most, I don't react well to change of any kind. So, any changes are highly destabilising. Through hard work and with the support of debt charities and the Citizens Advice Bureau, I have managed to get to a level of financial equilibrium even though my income is the least I have ever had in my life. Until...

Everything suddenly was thrown into disarray by the arrival of a white envelope which contained my Work Capability Assessment form. Suddenly, all my anxiety symptoms came rushing back. I had a full blown panic attack. Why such a reaction? I don't think anyone can understand the cumulative impact of all the rhetoric and talk about 'workers and shirkers' unless they have been involved in the realities of the so called 'welfare reforms'. The current political and economic culture casts me in the role of someone who is a drain on society. Despite having worked and 'paid' into the system for over thirty years, I feel guilty for being so ill, for so long.

Filling in the form itself, involves making sure I detail the impact of my condition on me. It means revisiting the worst times of my life, reinforcing the sense of me being a condition rather than a person. It reminds of the limits my condition places on my life, it reinforces the sense of being 'less than' everyone 'normal' and confirms that I am worthless as a person able to contribute to the wider community. This process of form filling was made worse by the fact that I had begun to volunteer on a regular basis and was rebuilding my self confidence, only to be reminded (by myself) of how far from 'normal' I am. I needed to get the form posted and away from me as quickly as I could. I was given a deadline of 18th March to return the form by and posted it on 4th March. If that had been the end of the WCA form, it would have been okay, but it wasn't.

On 11th March I suffered an emotional crisis triggered by another letter, which threatened me with losing my benefits because they had not received my form. It wasn't due until 18th March - the impact of the letter was compounded by the fact that in the past when I was in significant levels of debt I received similar 'threatening' legalese letters from debt collection companies. There was no phone number on the letter where I could query the non arrival of my form (along with significant amounts of reports and medical evidence). I had to phone the Job Centre Plus phone number. I had to wait 20-25 minutes before reaching a human being. The phone system is automated and it is not immediately clear that it is the right place for WCA queries. By the time my call was answered I was sobbing and distraught. Any ability to use my 'Wise Mind' skills had long since been overwhelmed by feelings of anxiety, panic and an increasing sense of injustice. The person at the other end, was unable to help me and pointed out that the system was showing that they had not received my form. As I had returned it on 4th March, this increased my distress. I asked what I was supposed to do? 'Send in a duplicate'. She dictated an address. 'That is different from the one on this letter'. 'Yes, now that you have failed to return the form on time, it needs to go for adjudication and you need to explain why it is late.' My mind spiralled, it wasn't late, I still had nine days to go until the deadline. She then explained that depending on whether my reasons were 'acceptable' I may have my benefits stopped. By the time I came off the phone I was completely out of control emotionally, something which I had not experienced for about a year.

My most level headed friend bore the brunt of my uncontrollable sobbing. Having read the letter several times, she pointed out to me that right at the bottom in smaller print than the 'URGENT THIS DEMANDS YOUR ATTENTION' opening paragraph, was the sentence, 'if you have returned the form already please ignore...' She spent a number of hours calming me down and we decided to leave redoing the form until after the weekend. We agreed that I would phone back the Job Centre Plus number on Monday and do a final check to find out if the form had been 'found'.

So, I phoned on the Monday, with still five days to go to the original deadline of 18th March. This time when checking the 'WCA system' the notes had been updated. My form had been received on 7th March. The lady asked me when the 'reminder' letter had been sent: it was issued on 9th March.

There had been no need for the letter to be sent, and therefore no need to cause me undue distress. The system did not help me remotely in my recovery or give me any incentive me towards returning to work full time. In reality, I do not think that I will ever be able to manage that and maintain my emotional stability. In fact the emotional fall out from the incident has caused me to remain emotionally vulnerable for a six week period. Energy which could have been spent on planning ongoing recovery and increase in activity which will eventually lead me on to a return to some level of paid work, has instead been spent in recovering from the WCA process and in regaining the emotional stability which had been part of my recovery.

On reflection my experience of the WCA process was relatively straightforward and simple, resulting in my current placement in the support group of ESA continuing. Without the pressure of being in the WRAG group of the ESA (and the £30 per week reduction) I can return to my path to recovery without daily anxiety about having to meet arbitrary deadlines, appointments and interviews which would destabilise me entirely.

Yet, I have suffered six weeks of instability unnecessarily. I am well educated, have had over thirty years of work and professional experience, have a strong support network and had been stable for some months prior to the WCA process. I can only imagine the damage caused by this process to those who do not have access to any of these internal or external resources.

I have a number of observations:

1) If you insist on people on sickness and disability benefits meeting immovable deadlines under the threat of losing their income, then your system needs to be equally accountable and efficient in managing the needs of those it purports to 'help'.

2) If you issue threatening letters to people who are emotionally and mentally vulnerable, please have the courage to provide a direct phone line on which to contact you. Do not pass the buck to public servants who are not privy to all the information about your processes and who are faced with having to manage highly distressed individuals, some of whom are at raised risk of suicide or self harm as a result of your system.

3) Because I have a mental health condition, does not mean that I can be dismissed as not being worthy of the usual courtesies and social mores of our community. Even in the criminal justice system a defendant is 'presumed innocent' after the police have laid charges against them. The WCA process feels as if I am considered to be deliberately trying to defraud the system.

4) 0.3% of welfare claimants have been proved to have made fraudulent claims. That means that 99.7% are not - why set up a system which is so punitive for such a tiny proportion of your target constituency?

5) When will we value people for who they are, not for how much money they either 'cost' or 'contribute to' society? Although, I can point to the fact that I have managed to work for most of my life I am loathe to base my value or any right to claim support on this. When I was able to I was happy to join with the rest of the community in providing for the vulnerable and those in need in our nation. After all, I was helped through university by free education, so it was right that I paid my tax and national insurance towards supporting those who didn't earn as much.

6) When we judge those on welfare, we forget that it is possible for anyone to lose their health, job or home due to a sudden change in circumstances. 'There but for the grace of God, go I...'