PIPs: A blind woman’s experience

I have been sent this new story about a bizarre PIP assessment.  Alice (not her true name) is blind.  She submitted medical reports (including one from a professor at Moorfields Eye Hospital) which explained her condition.  The assessor did not read them, appears not to have realised that she was blind, and denied her the higher rate mobility allowance.

When she sought mandatory reconsideration, things were quite rapidly put right.  But the DWP representative told her:

“We don’t look at NHS letters as anyone can make them up”.

Oh dear.

The facts

Alice is 54 years old. She is a widow. Her husband died 10 years ago. Since her teenage years she has suffered from a degenerative eye condition.  In the mid-80s, she had lost so much sight that she became registered blind.  A few years ago, after genetic testing, she was formally diagnosed with Stargardt Disease.  Stargardt Disease is permanent, untreatable and causes progressive sight loss, i.e. it only gets worse over time.  In the mid-90s, she also had sudden hearing loss.  Her loss is profound and she can only hear with two hearing aids.

For decades she received Severe Disablement Allowance.  From the mid-90s she also claimed Disability Allowance. She received low rate care and mobility for many years until changes under the Brown government made it possible for blind people to receive high rate mobility.  Her DLA awards were (sensibly) indefinite.  Last year she was moved from Severe Disablement Allowance to Employment Support Allowance.  Much to her family’s relief, without assessment.

The PIP process starts

She then received a 14-page letter telling her that she was going to be moved over from DLA to a Personal Independence Payment (PIP) and that she had to call the Department of Work & Pensions (DWP) to get a form (this can also be done by filling out a PIP1 form).  She could only call during the day, and because she has difficulty hearing people over the phone she had to wait for her daughter (who lives with her) to be with her.  On calling she had to wait a long time before speaking to somebody.

DWP then sent “The Form”.  It is a 56-page behemoth, and it contains only vague guidance on how to fill it in.  The questions are generic and not guided towards a specific disability. This makes it a challenge to address the salient points.

What was most concerning about the form-filling process was that it forces individuals to have to “reclaim” their benefits.  They must initiate the claim, provide the evidence and “jump the hoops”.  This is despite the fact that Alice had been claiming DLA for decades. Her family believes that it seems wrong as a matter of principle that after an individual has been awarded an entitlement by the government , the burden is on her to “claim it back”.  The resources of the government are enormous compared to the individual, especially those who are disabled.

The PIP assessment

Alice was dreading the assessment.  For as long as her family can recall, there has been an avalanche of complaints and distressing stories about the face to face assessments. Her son was long dubious about a common complaint by claimants, that the assessors didn’t “understand” an individual’s disabilities.  His perception was that what was important was gathering evidence, whilst being empathetic.  The need for medical knowledge seemed secondary to him.

His belief was wrong.  It was immediately obvious that the assessor had not read any of the doctor’s notes (or didn’t understand them), which set out his mother’s condition (including from a letter from a Professor at Moorfield’s Eye Hospital).  For example, the assessor went straight to her desk without guiding her mother to a place to sit, and she set up a Snellen chart (eye test chart), despite the fact in several doctors’ letters it was noted that Alice could only manage “hand movements” in one eye, and no perception of light in the other – she can’t even see the chart.

The assessment lasted about 30 minutes, and at least half the time was “wasted” on irrelevant questions.  For example:

“How do you manage your medications?”

although the family had already explained that there are no medications for Alice’s disabilities.  The most bizarre question was

“Do you understand money?”

Alice pointed out that of course she can understand it, but that doesn’t mean she can see it!  She obviously can’t manage her money (spoiler: she received “zero points” on “making budgeting decisions”).

The result

Alice received the “decision” letter about a month after the assessment.  She was given enhanced rate living (previously low rate care) and standard rate mobility (down from high rate mobility).  This was despite  the fact that the government recently suggested that blind individuals should receive higher rate mobility, and there are specific provision for blind individuals to get higher rate mobility.  Even though the letter was 10 pages long, only a short paragraph was dedicated to setting out the decision,.  This was completely generic.  No ‘real’ explanation was given as to how it was reached.

Contesting the decision

To contest the decision you must write a letter to DWP called a “Mandatory Reconsideration Notice” (Alice’s letter is reproduced at the end of this blog).  The problem with this is that for a number of disabled people, writing a letter is very challenging.  Alice hasn’t written a letter in decades (due to her decreasing loss of sight), and those with mental or learning disabilities would also struggle.

The other main issue is that whilst writing letters is familiar to those in the legal and administrative professions, it is alien to those in everyday life.  It is easy for those who have been trained to formulate arguments and structure their reasoning, but the average disabled individual doesn’t have this training and should not be expected to have it. Her son finds it troubling that we ask the most vulnerable to build their own case, gather evidence and construct arguments. He says: Even barristers can find that a challenging task!

The real kicker

The real kicker came at the end.

After sending the letter, Alice and her daughter phoned the DWP to double check that it had been received.  In talking, they explained Alice’s situation: that she has been registered blind for 30 years, but awarded lower rate mobility.

The DWP representative was very shocked.  He suggested she didn’t put in evidence about her blindness.  Alice and her daughter told him that they included letters from the top retina professor from Moorfields explaining everything.  The representative then said words to the effect of:

“We don’t look at NHS letters as anyone can make them up”.

He then said that if you were blind you should send in the blindness registration from the local council.  Luckily, Alice still had the original from the mid-80s and sent it in.  A few weeks later she was awarded high rate mobility.

Her son’s comments

Her son says:

Writing this has left me demoralised.  My mother doesn’t like to talk about it as it is upsetting for her.  She is not resentful, but she finds it difficult to sometimes to deal with the opportunities she has missed in life because of her misfortune.  She is grateful, however, for what she has.  Her two children and her friends were able to help her deal with the process.  Unfortunately, a lot of disabled people don’t have that luxury.  They must rely on the kindness and generosity of charities, and they can’t trust their government to help them.

I must take this opportunity to contrast the callous way DWP treat people to how those at Motability do. Motability is an excellent charity that allow those with high rate mobility (and veterans with mobility issues) to “trade” the allowance for a rental car for three years.  The charity sorts everything out (insurance, paperwork etc.), and it means that disabled people can have a reliable car and not worry about any hassle.  The economy benefits, because thousands of new cars are manufactured and purchased every year.  Talking to Motability is a pleasure.  When Alice phoned them to say she was losing her allowance, they were kind and empathetic. The first thing they did was ask if she was OK.  They couldn’t do enough to help and guide her.  Contrast this to DWP who are cold, discourteous and appear to have a “cover my ass” attitude.

I hope this account has not been too long, and that it has been of interest.  It has been challenging for me to write.  But you are right, these stories should be shared.  As Alice’s friend (who has severe spinal damage) said to her:

“If it’s been difficult for you, what chance do the rest of us have?”

 

 

 

 

Alice’s letter in which she sought mandatory reconsideratoion

 

I refer to your Decision on my entitlement to Personal Independent Payment dated 23 April 2017. The Decision awarded me enhanced rate benefits for daily living needs and standard rate benefits for mobility needs.

 

I consider that this Decision does not accurately reflect my mobility needs and I should have been awarded the enhanced rate of benefits for my mobility needs. I believe that important information has been overlooked, and that the nature of my disability has not been correctly reflected in the Decision. I set out below the reasons why my mobility needs are greater than those you have stated in the Decision, and set out information on my disability and my needs to support this below.

 

My disability

 

The specific nature of my disabilities is set out in the medical reports that I attached to my claim – these relate to my blindness and my severe hearing loss. I have been registered blind since 1986. I suffer from Stargardt Disease which is an untreatable condition. The condition has left me with no perception of light in my left eye and perception of light only in my right eye only. Simply put, I am totally blind in my left eye and have such severe sight loss in my right eye that I am unable to complete any visual tests except for a torch being shined into my right eye.

 

I also suffer from severe hearing loss. In my right ear, I have severe hearing loss. In my left ear, I have severe to profound hearing loss. I wear hearing aids in both ears. Without hearing aids I am unable to hear at all. With hearing aids I am still unable to hear or comprehend most/all noise except at a very close distance.

 

Planning and following a journey

 

You assessed my ability to plan and follow the route of a journey. The Decision states that for planning and following a journey, I need another person, an assistance dog or an orientation aid to follow the route of an unfamiliar journey – which scores 10 points out of 12. This is incorrect – I should have scored 12 out of 12, because I cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. This should have been obvious at my face-to-face consultation, however, I set out the reasons why I should have scored 12 out of 12:

 

  • I do not take any journey, unfamiliar or familiar, without another person.In both my face-to-face consultation and my claim form I made it clear that I am unable to complete any journey, unfamiliar or familiar, without another person’s assistance. This should have been obvious in the face-to-face consultation as, for example, I was unable to properly sit in the chair in the assessment room without guidance from my companions. I am unable to make even the shortest journeys outside my home without assistance. For example, I cannot walk to my neighbour’s home which is approximately 100 metres away, she comes to collect me and walk me to her house.

 

  • I use a white stick for all journeys outside my home, as well as being accompanied. This stick is specifically designed for those registered blind – as an orientation aid. This was written in my claim form. This should have been taken into account in the Decision as one of the requirements for scoring 12 out of 12 was that I use an orientation aidfor familiar journeys.

 

  • I need supervision – I need continuous presence of another person to ensure my safety in any public or private place outside my home. If not, there is a likely risk of a serious adverse event such as walking into the road, not identifying any hazard, obstruction or, unusual change in a familiar journey.

 

  • I need prompting– I am prompted repeatedly to undertake simple tasks in a familiar journey. I must be prompted for stairs, escalators, slopes, changes in gradients, and if walking through a doorway or narrow space. I cannot perceive these everyday things myself.

 

  • I require assistance– I require physical assistance time to time on familiar journeys. For example, opening doors, pressing elevator buttons, pressing light switches, or navigating past other people in public spaces. For example, I cannot see the door handle, or where a seat is to sit and needed help during the face-to-face consultation,

 

Undertaking activities

 

As described above, I cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. When assessing me, I would expect the assessor to be following the PIP Assessment Guide from 1 September 2016.  This guide requires that I must be able to undertake an activity (i.e. a journey) safely, to an acceptable standardrepeatedly, and within a reasonable time period. I cannot fulfil any of these requirements, for the following reasons:

 

  • I cannot undertake a journey alone safely:There is a significant and increased risk of harm occurring if I were to make any journey on my own. For example, I am at a likely risk of injury due to being unaware of any obstacles, extrusions, or movements in my surroundings due to the fact I have such severe sight loss. I cannot perceive any danger as I am neither able to see or hear risks that approach me, for example cars, other pedestrians, moving objects of any nature. I cannot see the kerb and do not know where the road starts.  These risks are all significantly greater than that for a non-disabled person.  As written in my application form, I get lost even in my own garden. I would not be able to complete any journey unaccompanied without a significant and severe risk of getting into an unsafe location due to being lost or unable to orientate myself.

 

  • I cannot undertake any journey to an acceptable standard:If I were to attempt to undertake a familiar journey on my own, I would not be able to deal with an unexpected change in the journey. I cannot follow a route. I could not make any diversions of any nature. I cannot walk to my neighbour’s home which is approximately 100 metres away, she comes to collect me and walk me to her house even though I have lived next door to her for more than 30 years. Therefore, my ability to undertake a familiar journey is not what could be reasonably considered to be an acceptable standard.

 

  • I cannot make any journeys repeatedly. Outside the house, I cannot recognise a journey as repeated or otherwise, because I cannot see where I am going. Only in my own home can I make repeated journeys from room to room, however many times I have to stop and sit down depending on the light. I can make my way into my garden but, as mentioned above, I can get lost there and need assistance to get back into the house. If I undertake any journey in sunlight, I require time (anywhere from 10 minutes to an hour) for my vision to adjust. In this time, I cannot make any movements at all without somebody’s help. This should have been obvious from my face-to-face consultation as I wore sunglasses inside the assessment room throughout and could not navigate around the room on my own.  This was discussed during the face-to-face consultation.

 

  • I cannot make a journey in a reasonable time period:I cannot undertake any journey in a reasonable time period as I will need to wait for assistance, pause in direct sunlight, and need to move slowly for my safety. It takes me far more than the twice as long than a non-disabled person would normally take to undertake any movement.

 

Why I require enhanced mobility benefits

 

I have set out above the reasons why the Decision to not award enhanced rate for mobility needs is incorrect. My disabilities leave me with a very high level of mobility need, and I receive enhanced rate mobility allowance under Disability Living Allowance, which I use towards a Motability car.

 

My Motability car is an essential lifeline for me to socialise and to attend my usual activities. I rely on my daughter to drive me in this car.  Without it I would have to frequently pay for taxis (with drivers I do not know and who are not aware of my disability). I would have to be led from my house to the taxi and I am very frightened at this prospect as I will not know whether the taxi driver is taking the right route. It requires placing an enormous level of trust in a complete stranger.  I am simply not safe taking taxis.

 

PIP is designed to help provide me with the support I, and people who are blind, need to overcome my disabilities. The assessment and the potential loss of my Motability car and access to the outside world has greatly upset and distressed me. The loss of my independence over the years has been mitigated by having a Motability car available and I do not want to lose this part of my independence too.

 

My children have listened to me, typed up and dictated this letter to me, so that I may ask you to reconsider the Decision. I have signed the bottom of this letter.

 

I request that you change my entitlement for mobility needs to the enhanced rate of benefits.

 

6 thoughts on “PIPs: A blind woman’s experience

  1. Keith Holmwood

    Thank you so much for this – and other – posts. Most fit people, like myself, have no idea how brutally the disabled can be treated, until a friend or family member is affected.

    Keith Holmwood

    Like

  2. Clare Lea-Carnell

    Thank you to Alice and her family for sharing her experience. The codes of conduct for health professionals clearly state that this kind of attitude and demonstration of poor interpersonal skills border on neglect. Failure to guide a lady with such poor vision to a chair is not “assessment” . That action alone demonstrates the unfathomable attitude towards those with disabilities that whatever training the DWP gives to their staff . Almost as though the opening lines of the DWP manual states: “Everything you are shown, are told or has happened before your assessment will be a lie. Believe no-one, nothing, and never listen to relatives.”
    I am so very sorry and angry that this was allowed to happen to Alice, and also to other people. As someone with a disability, medical staff and physiotherapists will try to instill confidence in us, try to help us not to be defined by our disability, try to develop as people. This brutal, shockingly depraved behaviour on the part of those involved should result in disciplinary action and a simple apology with “lessons will be learned” type statements is not required.
    At what point did Consultant Opthalmologists and eye surgeons begin lying about the devastation that is sight loss?
    Use the information recommended on Sir Henry’s blog to challenge this as far as you can go.
    The system is badly bent, broken and corrupted. Reforms for those who have no alternative but to apply to it are urgently needed.

    Like

  3. Thank you, Clare. Today, the Islington Law Centre, which has massive experience of helping people in cases like these, commented on this blog: “This is sadly by no means an isolated example of dreadful decision-making.” Surely “man’s humanity to man” should shine out even among those who are tasked with the job of distinguishing between genuine cases and would-be fraudulent cheats. Not even to read a letter from a consultant ophthalmologist about his blind patient seems to be quite extraordinary, to put it as politely as I can.

    Like

  4. Pingback: Poor decision-making, Personal Independence Payments (PIPs) and PIP appeals – Henry Brooke

  5. Pingback: Poor decision-making, Personal Independence Payments (PIPs) and PIP appeals | Govt Newspeak

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