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' (part 2 - My New Life on the Rubbish Heap)

In the past two months I have had my income slashed by 2/3. Let that sink in. I have been assessed by the DWP as being unable to return to paid work due to the impact of my condition. But the same department have decided that I am not sufficiently incapable that I require any additional help with my living costs. So, I am adjusting to having £80 a month to live off after I have paid my housing and essential costs. I do not drink alcohol, I don't smoke. I have disposed of the vehicle which was helping me to volunteer and visit important friends once or twice a week. I am no longer able to afford the cost of swimming which was part of a plan agreed with my support worker to help me keep well. The council funding which would have supported projects open to people on limited incomes has been slashed. Opportunities to develop social skills and help me overcome my depression and anxiety symptoms have now closed down.

I am tired of fighting this system. I am sick of hearing myself pretend that I am doing okay with it. I am sick of not being able to be positive about the prospect of maintaining my recovery because the system keeps kicking me down. All made worse by the speech making and promises about mental health. My response to Mrs May right at the moment on how to achieve a major step forward in helping those of us with mental health issues is: please provide an adequately qualified assessment of mental health conditions using those who have experience of the complexities inherent to decide how my condition affects me on a day to day basis.

You may detect from the tone of my opening paragraphs that I have failed (again) in my paper appeal against the wholesale loss of all disability related benefits which has stripped out two thirds of my income. I am now facing the prospect of having to present my case within a courtroom to a panel which will include a member of the judiciary.

The following is the basis on which my appeal failed (bearing in mind that I have been unable to cope with reading any correspondence from the DWP since last June, anything that I know has been filtered by my support worker, so I did not have the full impact of the decision):

1. Prior to the assessment, I had suffered a number of vomiting bouts related to anxiety and stress caused by the PIP process. I decided to take additional meds to ameliorate these symptoms so I would not be sanctioned for missing the appointment. This was cited as evidence that I was managing my symptoms. Despite obviously overdosing on a range of medication this was not recognised by the 'health professional' or the faceless and nameless assessor at the DWP. This betrays a significant lack of medical knowledge related to the medication of complex co-morbidities related to BPD (Borderline Personality Disorder, aka Emotionally Sensitive PD).

2. Because I am intellectually capable of being able to read, interpret and use bus timetables, it was assessed that I do not struggle to use public transport. This is despite me explaining my experience of high levels of anxiety and inability to cope with large groups of people and sudden changes to timetables caused by road traffic incident, road works, etc.

3. The 'health professional' assessed that I was only affected by fluctuating moods on approximately 2-3 times a month. This directly contradicts the information I provided during the asssessment, or, indeed any rudimentary understanding of the major symptoms of ESPD. At the outset of the assessment interview I asked the assessor about his understanding of mood disorders in general and Personality Disorders in particular, he stated he had no experience of mental health, and none at all of PD. Given the complexity of diagnosis and the need for specialist intervention in order to accurately assess the groups of symptoms evident in ESPD, the PIP assessment is at best a blunt tool and at worst an actively vindictive weapon which effectively exacerbates the worst of my symptoms.

My overall observation of this assessment is that even for physical conditions it is rudimentary in the extreme. There is no scope for assessing those of us considered 'high-functioning', ie there is no method for assessing the emotional and mental impact of my mental health condition. It can only assess my intellectual capability which entirely misses the point of how mental health conditions affect people's ability to function on a day to day basis.

Overall my feelings at the moment are frustration and impotence. I know the progress I was making in trying to rebuild a life which allows me to manage the worst of my symptoms has been stopped in its tracks. Following the indifference and active anti-pathy towards the more vulnerable in society evident in our political leadership and rhetoric, I fear that I must become accustomed to my place on the rubbish heap of society. Simply because it seems that, at heart we, as voters will always put our own self interest ahead of everything else.

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?