Shoshiplatypus

Today I had my PIP assessment.

PIP and DLA

PIP is Personal Independence Payment, the new disability benefit that is being rolled out in the UK to replace the old DLA (Disability Living Allowance). These benefits are to enable chronically sick and disabled people to meet the extra needs they have and to help them to live independent lives. Living with a disability can be an expensive business, and for many vulnerable people, disability benefit is their only source of income because their disability or chronic illness makes it impossible for them to work for a living.

In recent years, there has been a great deal of negative publicity about benefits recipients in general, and they have been demonised as scroungers and fraudsters. Of course there are always people who will abuse the system and milk it for all it’s worth, and the system should be robust enough to weed such people out. However, the general opinion is that the new PIP benefit is designed in such a way as to make the process of obtaining it so stressful and difficult that the most vulnerable people who need it the most, simply cannot face the ordeal of applying, being turned down, and having to appeal. It is said that this is the aim of the process, to weed out the number of recipients, but it ends up penalising those who need it the most. Particularly vulnerable are those who suffer from mental health issues, who do not seem to be dealt with as sympathetically as those with a purely physical disability, although even these people suffer what amounts to abuse. Mental health issues can be very complex and need specialist training in order to understand them, and the problems most likely arise because the assessors are simply not qualified to make an informed assessment of people’s needs. Also, for many people in that position, they find it hard to express their needs and they may come across as coping a lot better than they actually are; this is a learned coping mechanism to enable them to navigate through their very difficult and stressful lives.

I saw my GP this afternoon, regarding my chronic headaches, and we discussed the issue of PIP a little, as I had just had my assessment during the morning, and he pulled a face and said he had witnessed a great many people suffering at the hands of the DWP (Department for Work and Pensions) and was appalled at the personal stories of many of his patients. He said he quite understood how stressed out I had been feeling about it all.

To obtain the old benefit, DLA, the emphasis was more on one’s diagnosis, and assessment by one’s medical professionals played a greater role. This seems quite sensible to me; after all, they are the ones who know you, and are aware of how your condition impacts your daily life. PIP, on the other hand, majors not so much on individual diagnoses as on how your disability affects your day-to-day living. The application form is over 30 pages long and consists mostly of a series of check-boxes by which you indicate your answers to such questions as “can you prepare a simple meal” and “can you dress yourself unaided,” and so forth. If you just tick “yes,” you are awarded no points. You have to amass sufficient points to qualify for either of the two levels of the care component and of the mobility component. You need to understand how to navigate the form and qualify your answers. You might be able to say, “Yes, I can cook a simple meal, but it makes me so tired that I cannot do anything else for the rest of the day,” or “Yes, but I am at risk of dropping the saucepan and burning myself, or I might fall because my balance is poor,” or “I cannot understand how to follow a recipe.” The form is an absolute minefield – it looks simple on the surface, but if you don’t understand how to navigate it, you can end up disqualifying yourself from any benefit at all.

There are various organisations and charities which help people to fill out the form. I have subscribed to Benefits and Work, and downloaded their very useful guides. Citizens’ Advice, Age UK, and various disability charities will also give excellent advice, either online, or through a personal appointment.

The face-to-face assessment

A new step has been introduced in the PIP application process, that of the face-to-face assessment. Nearly every applicant has to attend this meeting, which is conducted by a health professional (either a nurse, physiotherapist, occupational therapist, paramedic, or doctor) who asks you lots of questions, and then submits a report to the DWP. These health professionals are employed by two independent commercial companies paid for by the DWP, and they have the general reputation of being very poor at their job, misrepresenting clients’ answers and in some cases, telling outright lies. There is evidence to suggest that they are actually paid a premium for rejecting people and thus saving the government money, and some even decide on this outcome before they have even seen the applicant.

My GP today said that things have definitely improved since the initial roll-out of PIP; he has witnessed a change as he listens to his patients’ experiences. Perhaps I have been fortunate in coming in at the tail-end of the transfer from DLA to PIP. It has been conducted nationwide, region by region, and our area is one of the last. This means that perhaps many of the earlier pitfalls have been somewhat ironed out – there has been a lot of adverse publicity and the government has tried to tidy up the system, because it costs them a huge amount of money to reject people, who then go on to appeal. The final appeal is in a law court before a tribunal, one member of which is a judge.

A great number of people are still rejected at the face-to-face assessment stage. The next step is to apply for a mandatory reconsideration, and quite a high percentage of people have the initial decision reversed at this stage. Those whose rejection still stands are free to apply for an appeal, and this can take place up to a year after the mandatory reconsideration, during which time any existing benefit is stopped. Some people have to live out this period with absolutely no income at all, which causes untold stress in itself, not to mention the stress involved in jumping through the government’s hoops in order to try to prove one has a case.

My assessment

Knowing what I know, and perhaps not having helped myself overmuch over the past week, watching YouTube videos of people describing their PIP nightmares, I was in a pretty stressed-out state by the time of my assessment. I had decided a couple of days before that I would refuse to play the victim card, that I would take control of the interview from the outset by asking the assessor certain questions and stating my extreme resentment at having to go through this at all. I had been granted a lifetime award of PIP and thought the stress of applying for benefits was a thing of the past, until the government moved the goalposts and “indefinite” turned out to be anything but. Even so, by this morning, I was in a fairly highly stressed state.

They phoned me yesterday to ask if I could come in a bit later – 10.15 rather than 9.30 a.m., which suited me better – a later start which is better for me, and also for our friend who gave me a lift (my hubby was unavoidably involved in another appointment). When I arrived, I was told that my assessor would be spending about 20 minutes reading through my application form, and they would call me in once this was done. After a while, I was told that she would be at least an hour in total doing this, because there was so much material. I didn’t mind waiting; the receptionist was kindness itself, anxious that I wasn’t too cold, and did I want a hot drink, etc. After a while I did tell her I was getting cold and she turned the air conditioning down, and offered me her cardigan to put round my legs (which always get cold if I am sitting for any length of time). The reason there was so much material for the assessor to read was that for each page of questions on the application form, I had attached a separate sheet or sheets, giving qualifying information and explaining my situation. My health problems are complex and variable, and impact my life in many different ways, and I wanted them to have as much information as possible, so that they could make an informed choice about whether to grant or refuse my application.

When I was eventually called in, the assessor welcomed me and apologised for the delay, and led the way into her consulting room. I have heard that often, they follow you in, so that they can surreptitiously monitor how you walk etc. I have also heard of several people being tricked when the assessor accidentally-on-purpose knocks over a pot of pens so they fall on the floor, in the hope that the client will automatically bend down and help pick them up, showing themselves to be more mobile than they have suggested on their forms. In my case there were no dirty tricks like this.

I did what I intended at the beginning. I asked politely if I could please establish one or two things before we began. I began by asking her full name, as I had simply been introduced to her as “Karen.” She told me without demur. She had already informed me that she was an occupational therapist. I asked her what her views on ME were, because there are still some medical professionals who do not even acknowledge that it is a real disease. I said I needed to know what she felt about it, so that I would know whether I would get a fair assessment. She reassured me that in this current job, and in her work as an OT, she had had many dealings with patients with ME and understood what a complex condition it was and how it impacted one’s life in many different ways. That reassured me, as did her answer to my question about how much she knew about life with a stoma. Again, she had had quite a few patients living with this, and knew what they had to deal with.

I told her that I was very upset and stressed out that I had to go through this at all, having been given a lifetime award of DLA, and she was very sympathetic and said this was the case for very many people. I said that I had come across many horror stories about these assessments and expressed my disapproval of this. She said, “I want you to put behind you any fears on that score, and to try and relax. I am just going to ask you a lot of questions and write down the answers, and I will help you through it.” She came over as genuinely caring and sympathetic, but I remained on my guard, because many people have reported that friendly assessors are like snakes in the grass, and it’s all part of the softening up process, getting you to relax and become over-confident!

However, as the interview progressed, she was as good as her word, and allowed me to fill in any details beyond what she had asked me, and if she wanted me to explain further, she asked me, and we had a good discussion. She repeated most points at the end of each section to make sure she had got it right.

The whole interview took over an hour. Towards the end, she kept saying, “We are nearly there.” I told her I was getting quite tired and she understood that, and said I had done well. At the end, I asked her why she had given up her profession as an OT to do this job, and her answer reassured me again – it was not what I expected. I had always assumed that these assessors had been tempted away from their caring vocations into the fleshpots of commercial gain, but she said, “First of all, it’s 9-5.” I thought, yes, maybe she’s got family – she was probably in her 40s – she said she had worked as an OT for over 20 years before starting to do this. She then said that she got very demoralised in her work as an OT, having to send patients home without an adequate care package, probably because of financial constraints in the NHS; she felt that however good she was in her profession, she could not do as good a job as she wanted. She said that at least in this current job, she was able to make the experience as patient-friendly as possible.

All these answers had the ring of truth, and her general demeanour throughout, and the fact that she never once tried to trick me (I was hyper-aware!), and was caring, sympathetic and understanding, convinced me that she was actually doing what these assessors are supposed to do. About a quarter of the way through the interview, she asked me if I needed to put my feet up. She had obviously read in my application that I am most comfortable with my legs elevated. I said yes, it would be more comfortable, and she produced a stool and helped me get my feet up onto it, and then offered the couch for me to lie on if I wanted! I said no, I was fine in my wheelchair, but much more comfortable with my feet up on the stool.

She completed the session by running a few basic musculo-skeletal tests – asking me to raise my arms, push against her, etc. This was very easy, and I said I didn’t think it would tell her anything because as a one-off, I could do them with ease, but doing them repetitively might be another matter. She duly noted this, and added a few notes.

At the end, I asked her what she thought were my chances of success, and she said she didn’t know, because once she sent off her report, it was out of her hands and into those of the DWP who would make the ultimate decision. She informed me of the appeals process if I was turned down. She said she had written more or less everything in my own words, in answer to her questions. I know that further down the line, after I get my decision from the DWP (6-8 weeks from now), regardless of the outcome, I can request a copy of her report. She also told me that if the DWP approached her for more information, she might need to phone me about it; this would not mean that I hadn’t given her the “right” answers, but that she hadn’t asked enough questions. She said that if she had to do this, I wasn’t to worry. She asked my permission for this, to which I agreed.

She had asked me what level of DLA I was currently getting. The care component of DLA is at three levels, and I am on the middle rate of care. The mobility component has two levels and I am on the higher rate. PIP has a slightly different system; there are now only two levels of the care component: standard and enhanced, and two levels of the mobility component, also standard and enhanced. This has meant that a lot of people transitioning from DLA to PIP, who were on the lowest rate of care, lose out on that component completely when they apply for PIP. She said to me that I might even end up with more money than I am currently receiving on DLA. Certainly my needs have increased since I was given my grant of DLA, with the added burden of living with a stoma, which classes me as 100% bowel incontinent, which automatically gains you points on the PIP scale, and I also have partial urinary incontinence caused by nerve damage from my chemotherapy.

However, I am not getting my hopes up on that score, or on any other; if I end up with the same amount as my current DLA, I shall be content. The only other aspect is the time period. I have heard conflicting reports as to whether a lifetime award is ever actually given for PIP; some say the maximum period is 10 years before reassessment, and others say they have a lifetime award. Time will tell, I suppose. I just hope they won’t decide on a one or two year period before reassessment because I really don’t want to have to go through this again! My GP’s letter in support of my application describes my medical conditions as “long term and enduring,” and that I am on “lifetime” medication, so hopefully that will stand me in good stead. My problems began with the onset of my ME 12 years ago so you can hardly call this short term.

So now we wait. I shall try and put it to the back of my mind for the next couple of months, as I did when I posted my application form, and hope I don’t get too stressed out with the arrival of the dreaded brown envelope that puts the heeby-geebies into all PIP applicants!