Written evidence from Name Withheld (PEA0100)

I am writing to you on behalf of my mother. I am her 19 year old son. I have typed up this letter with reference to a recent PIP assessment that took place in October 2017 at Jamie Bell Physiotherapy. The detail that I will be providing has been discussed with my mother and her partner. The following records have been sent to ATOS to make an official complaint to the Department of work and Pensions committee at parliament and  my mother will be seeing her local MP Stephen Morgan in Charles Dickens ward Portsmouth.

My mother suffers with M.E, PTSD, depression, anxiety, manic episodes, bulimia and binge eating, tennis elbow in both arms, calcification and a impingement of her right hip, probable vestibular migraine/meneires disease (she is under ENT for this) very painful monthly periods (she is currently under GYNEA for this.) and finally fibrocystic breast disease.

Her medication is as follows: Fluoxetine 60mg o.d, Co-codamol 30/500mg Q.D.S Phernergan 50mg o.n, Mefenemic acid 250mg T.D.S on first day of her period and Tranzemic acid. She also takes lactolouse 15ml T.D.

My mother was previously awarded enhanced daily care and enhanced mobility until 2018. In June this year. She was sent a form to fill in about how her illness is affecting her now. Her and her partner filled this in and she was called in for a face to face assessment. She called ATOS to ask for a home visit as she was incredibly worried that she would not be able to get out of bed on the day of assessment thus resulting in her benefit being suspended. She was refused a home visit. Her initial appointment was at 9am in Waterlooville. My mother asked if she could change the time and area of her assessment. This is because her partner needs to take my brother to school in the mornings and she is also in a lot of pain and quite stiff first thing in the morning. This was granted and an appointment was made for the 10th of October 2017 at Jamie Bell Physiotherapy Portsmouth.

On the morning of the appointment my mother was incredibly anxious. She had to get a taxi to the appointment and a return taxi home. Her partner assisted her. On her return she was very upset and kept crying. She rang the DWP and told them about her experience. Please see the following points outlining her assessment. This has been sent to ATOS the M.E association and the DWP committee in parliament. I have typed and corrected my mother’s version for the purpose of this letter as her grammar punctuation and spelling were incorrect. You can obtain the original copy if needs be.

1. I was so nervous about the PIP assessment and raised a concern that I had heard horror stories about other assessments and assessors lying on the forms. I was concerned that my assessor would do the same. She then said to me that she was highly offended by my concern and was unsure if she could carry out the assessment as I had offended her so much. I apologised and she repeatedly told me she was offended. I stated it wasn't my intention to offend her. She then informed me that she was writing on top of the assessment form that “patient is concerned that I will lie on Assessment form.” she was looking directly at me while she worded out what she was going to type about my concern. I felt so guilty that I continued to apologise. She then said “yes you did offend me no one has ever asked me that before.  We got off to a bad start but I think we are OK now. So we will see how we get on.” I was not OK I felt awful and very uncomfortable, I became tearful and had to really fight to hold my tears back.
2. I took my partner who cares for me with me to the assessment.  When he tried to speak she said she was not concerned with what he does and that he was out of the equation, she asked what I did when my partner was not there, he stated that I'm rarely alone she then said yes but I'm asking the claimant how she would manage without you there. I answered just to please her. In theory if my partner wasn't there I would need a carer or another family member to help. My partner has a great insight too what life is like for me and I feel that he should of been heard.
   
   3. I got very confused with some of the  questions i.e. care for my child , she asked me if I cared for anyone  I replied yes my children. She then said how do you care for your children I answered I'm there mum and I love them she then said yes but how do you care for them. I responded that I was unsure what she meant. Eventually she explained and asked did I get paid to care for them. I was mentally drained by the end. I kept crying throughout the assessment. I had to ask on a few occasions for her to explain what she meant.
   
   4. Questions were asked like do you watch telly, can you text do you have online banking, I answered yes but was not allowed to explain as and when I watch telly or carry out the other tasks and if I am able too due to pain or fatigue.
   
   5. When the assessment was finished I wanted to get straight out. My partner helped me up and I proceeded to walk out of the office with his support.  The assessor then said “we'll I was going to shake the claimant’s hand but she can't get out quick enough.”  I turned and shook her hand as I was worried I offended her again.
   
   6. After the assessment I cried for 2 hours. I rang the DWP and told them what had happened. They advised me to complain to ATOS and if all didn't go well with my decision that I could appeal. I had sharp shooting pains in my hands. My legs were like jelly. I felt suicidal. I have also been over worrying that my benefits that I am entitled to will be stopped. I rely on pip to help with transport to be able to take my autistic son with tic disorder to his appointments and clubs. Also for my many appointments. Obviously there are days when I can hardly move or walk and I have to rely on my partner heavily.  Pip is so important to me to be able to have a comfortable way of life and to know that I can pay for others to help me with my son etc.
   
   7. On reflection I did not have an opportunity to explain my complex illnesses I don't feel I was heard and neither was my partner who sees me on a daily basis.  I felt that I answered questions just to make the assessor happy.  When you have been told that you offended someone at the very beginning of the assessment it makes for a very uncomfortable hour and a half. Questions like can you wipe your own bottom are difficult to answer when someone has practically told you off and spoke down to you.

On the 24th of October my mother’s PIP was due to be paid into her bank account. She had received no letter informing her that her payments had gone down and why. She rang the DWP and asked them what had happened. They informed her that she had only been awarded standard daily living. My mother was in shock and was advised that when she received the award letter she could ask for a mandatory reconsideration. The next day she still did not have an award letter and phoned again as she was concerned about the time limit to ask for a mandatory reconsideration. The lady on the phone advised her the letter would be sent out first class. My mother received her award letter today and herself her partner and I are concerned by the untruths the assessor has told. My mother phoned the DWP and asked them to document some of the discrepancies my mother and partner had noted. She was advised that a new case worker would be in touch.

My mother was awarded 8 points for daily care and 0 points for mobility.

My mother, partner and I have broken down the award letter and picked out the areas where we discrepancies. Please see below and refer to my mother’s telephone conversation today 26th of October at 15.10pm.

Daily Living

Preparing Food score out of 8

you need an aid or appliance to be able to help prepare or cook a simple meal. 2 points

John my partner does the cooking. There are days sometimes weeks when I can’t get out of bed or stand to do the cooking or prepare food.

Eating or drinking.

You can eat or drink unaided. 0Points.

I need reminding to eat or woken up to eat. I also throw food up as I worry about weight gain. I also binge eat and hide food in my bedroom drawer when I am able to get out of bed.

Managing treatments.

You can either manage medication/therapy or monitor your health condition unaided,or you don't need to. 0 points.

My mother told the assessor that her partner has to give her medication and physically bring it in to her when she is stuck in bed. He also gives it to her daily as she forgets if she has taken it or not, she has double dosed. She also stopped taking her medication as she thought the government where trying to poison her. This made her really ill and she left the house in her pyjamas to go and live with the homeless.

Washing and bathing.

You need an aid or appliance to wash and bathe 2 points

My mother said there are days or weeks when I can’t wash or bathe at all when I am bed bound. I stay in the same pyjamas and need encouraging to bath. I don't clean my teeth, one because I'm too tired, secondly I'm asleep and thirdly the repetitive motion of tooth brushing hurts my arms.  John will encourage me to get in the bath and assist me with washing. On normal days I can get in the shower however I am in pain and get dizzy I have fallen in the shower a few times and I'm scared to use it alone so john will help me in and out. She also described to the assessor how he helped.

Managing toilet needs

you need an aid or appliance to manage your toilet needs or incontinence. 2 points

My Mother told the assessor that John has to help her to the toilet and help her on or off as she is  too weak. That she will also use walls and sinks to help her if no one else can. Herself and her partner said she is rarely alone. She also said she has fallen in the bathroom and got wedged between the toilet and the sink.

Dressing and undressing

you need an aid or appliance to dress and undress. 2Points.

My mother said I cant dress or undress. I stay in my pyjamas as I am too weak to get out of them. On normal days. I am in pain and it takes a lot of energy to dress and undress john has to help me.

Communicating.

You can express and understand verbal information unaided. 0 points.

My mother said I have difficulty understanding. This was clear during her assessment as she asked several times what the assessor meant. She could only remember 1 of the 3 items the assessor asked her to, and when she asked her to take away numbers she got really confused and started adding and taking away she had to ask for assistance with where she was and had to use her fingers. The process took a long time and the assessor helped her get back on track with the counting order.  Her speech gets slurred when she is tired and her voice sounds shaky. She gets words muddled up and back to front. She also has great difficulty hearing responses due to her inner ear problem when she is fatigued and in pain she can’t take in information.

Reading.

You can read and understand basic and complex written information either unaided or using glasses or contact lenses. 0 points

She explained that she has trouble understanding written information and when she was in a women's refuge she did a test for dyslexia. She has never been officially diagnosed but knows that she struggles with comprehension spelling and grammar. She explained that if she reads, she needs to be able to listen to the book and read it at the same time otherwise she doesn’t understand the text. She will also need to read and re read, she cant give an account of what's happening in her book as she forgets. She will mainly use it for relaxation and to aid sleep.

Mixing with other people.

You can engage with other people unaided. 0 points.

My mother said My partner has to help me when I go somewhere new I am worrying for days and get palpitations.  she explained that she struggles to meet new people that she doesn't cope well. She also said that she has to cancel appointments and people coming round as she can’t face them. she can discuss with her GP, however prior to the appointment she is worrying that she does not come across very well and she will rehearse what she is going to say over in her mind she will obsess about it, this also happens when she goes to hospital appointments. Last year she went to a family wedding she worried for months prior and was having nightmares about awful things happening. She comes across as laid back however struggles terribly. She takes her son to his appointments but has to take her mother or partner with her as she forgets what was said or will forget to ask important questions. She also told the assessor that she shouts at people and gets irritated if she doesn't understand , or feels intimidated and controlled. She also gets paranoid that people and her family and friends don't like her. She can misread people’s communication and will get angry and cause a row.

Making budgeting decisions.

You can manage complex budgeting unaided. 0 points

she told the assessor that john manages the incoming and outgoings. she does have online banking which john helps her manage . she also has direct debits set up for peace of mind. These have been set up for a long time. When she is manic she spend lots of money on ridiculous things that we don't need. she steals pathetic things from shops.

Mobility

You can plan and follow a route or journey unaided. 0 points

She told the assessor that planning and following a journey she gets confused and anxious. she knows the bus route to her sons school as it is something she has done for  years. John will accompany her or my motherwill and john helps to plan a journey as she has got lost and forgot where she is going.

Moving around

You can stand and then move more than 50metees but no more than 200 metres either aided or unaided. 4 points

My mother said there are days or weeks when I am bed bound and I can hardly walk or stand, on these days I do not go out. On normal days I am in pain and need help and support from my partner to walk due to pain and fatigue. I have severe pain in my hip that gives way and my limbs and my joints hurt. A small journey can put me in bed for days. I also have to rest before and after a journey. I have a problem with my neck that goes into spasm and I can’t push myself up and out of bed. I have balance problems vertigo and dizzy spells. I have fallen on several occasions and I also have to go down to the floor when I am dizzy. I walk into walls and my vision becomes blurred.

My mother would like you to reconsider her award due to the points the assessor gave her conflicting with what she actually said and what her daily life is like. In the written text of the report there are some areas that she would like to bring to your attention that are completely untrue. They are as follows. The report states I did not mention any eating disorder. I did mention my eating disorder as the assessor asked me how many times I had made myself sick that week. I replied 4. The report also stated that there was no evidence that I needed prompted to eat. I told her that my partner has to wake me, or encourage me, or that I binge eat and throw up. I also hide food. She also stated that my speech was concise and clear. I got muddled with my words I had to ask my partner for word prompts and I couldn't remember the 3 items she asked me too. My speech becomes more slurred when I am exhausted or having a inner ear attack. The report read that there was no evidence of hearing aids that I was able to see family and friends and that I can communicate on the telephone. I have to have my phone up high I cant understand, and mishear what my partner and children are saying, I get distorted hearing, tinnitus, pulsate tinnitus and whooshing in my ear. My ENT said I have mild hearing loss with probable vestibular migraine or meniers disease. I am still under investigation. This is a very disabling and I explained to the assessor about it .The report stated that I am able to see family and friends.  I can only do that on occasion and a lot of the time I have to cancel. I also said that I have lost a lot of friends since I have been ill and I have become quite isolated. I am too tired to manage conversation. . It exhausts me physically and mentally and I have to rest before and after. The report also stated that I take my son to appointments I explained that I take him in a taxi or use my free bus pass that I was given from my prior assessment as I scored enhanced mobility. I will now loose this because the assessor has not marked me fairly My son has asd and tic disorder he also suffers with gastrointestinal problems and has a lot of appointments. I do not receive any extra benefit for him .The report states there is no specialist mental health input and no evidence of significant anxiety. I was crying throughout the assessment. She said that I had provided enough detail about my mental health in my form. She asked why I took phernergan I explained due to the PTSD as I cant sleep, that I have flash backs and become manic. When she asked me if I had suicidal thoughts I broke down and was sobbing uncontrollably, my partner took my hand to comfort me and she offered me a tissue. I kept breaking down I was not confident I was very upset. I also told her that I see my GP now for my mental health and that I was to attend Solent recovery college, however my health had taken a back seat due to my sons appointments. It said that I appeared a little fatigued. I was exhausted I had pain in my limbs and I was in discomfort when she was doing the musculoskeletal test. It also states that I am able to drive. I do not drive I have never took a driving test or owned a licence or a car. I rely on taxis and buses. My partner will also assist me with directions and planning she was told all this yet she states I can plan my own journey.  The report also states that I was engaging with the assessor well. This is completely untrue I found the whole experience degrading upsetting and exhausting. I was not at ease and could not wait for it all to end and get out of the room.