Written evidence submitted by Anonymous (HAB0087)

 

 

Call for Evidence: Health assessments for benefits.

 

My personal response to some of the questions posed by the Terms of Reference:

I am a claimant of ‘health related’ benefits, both Employment and Support Allowance and Personal Independence Payments. I am disabled and suffer with long term chronic health conditions that render me unable to work and I will not recover.

 

In              I was diagnosed with a brain tumour and after surgery I developed a serious infection

(sepsis) around my brain. The consequence of this was lots more emergency Neurosurgery, procedures, devices implanted and I continue to have NHS support from various medical Consultants.

I suffer numerous, complex medical conditions, have a brain injury and my cognitive function was affected. Employment is no longer feasible.

 

In considering the suitability of assessments I haven’t been able to answer all the questions but, I

have given an opinion on some.

Given the nature of some of my responses I would like my responses kept anonymous. I do not have a problem with my Christian name being used against quotes but I have given very personal information and do not wish to be fully identified.

 

How could DWP improve the quality of assessments?

For claimants suffering with rare, complex or disabling chronic conditions the DWP questionnaires (point scoring) are not relevant and do not help claimants express how their condition affects them personally. Functions/tasks are broken down into descriptors and the expectation is that claimants will respond with the words deemed relevant. Breaking down medical conditions and asking how

they affect chosen ‘tasks’ is unrealistic. As a claimant, I know (and cognitive tests have found) that

when I suffer infections, my cognitive function goes into decline and everything affects me and

everything I do. Suffering a neurological condition is not ‘black and white.’ There is no set pattern,

nor any set parameters. Brain injuries are unrecognised by the assessments.

 

Another example: Completing my PIP application, I felt obliged to try and explain why I struggle to

perform ‘Intermittent Self Catheterisation’ (ISC).

I am a very private person and I struggle to discuss this, but given the variable pressure problems I experience around my brain and the amount of dizziness from the amount of Neurosurgery I have had … some tasks are extremely difficult. My balance and coordination were also affected by the brain tumour. Combined problems render ISC difficult for me. Failure to do the task (in my case) could result in infection and/or far worse consequences. This has been discussed with me at length by my Consultant, but this doesn’t fit into the PIP parameters for “Managing Toilet Needs.”

 

During my face-to-face assessment with Capita I explained (whilst embarrassed & upset) how difficult this task is for me and I had included a written statement explaining this on my application form.

I later learned that the assessor documented “no observation of dizzy spells” and further stated that

I was able to “crouch down” and stand back up unaided. This did not happen, it was untrue. I was


not asked to crouch down and stand unaided, I would have required assistance. A relative was with me at the assessment.

I am unable to say why the assessor felt this relevant to include it in my PIP assessment.

Dizzy spells have been documented by Neurosurgeons, Neurologists and other medical professionals over the years. I had included three ‘NHS’ headed letters with my application stating this and they were obviously ignored.

When I looked over the assessor’s report there were too many statements that contradicted the ‘NHS’ medical reports I had already supplied. The whole document contradicted itself.

Statements made in my Capita assessment were fabricated, one of which was medically not possible.

 

From my own experience, I feel DWP could improve the quality of assessments by requesting qualified medical practitioners conduct them. By that, I mean medical practitioners that have completed four years post graduate and qualified as doctors or higher. There should also be doctors with specialist areas of expertise. At present, on the surface, it would appear that assessors are copy and pasting into reports and have bare minimum “medical training”.

The statements in my assessment were, in my opinion, insulting to the Neurosurgeons and Neurologists that have provided my care over the years. Clearly, the medical evidence that I supplied detailing my difficulties were ignored.

 

I also feel that primarily, claimants should be briefly asked about their conditions and how they are affected. Their response could be forwarded to the claimants own medical team, for example: GP, NHS Consultant, Care Givers et al and they be asked to confirm the statements made by the claimant and an opportunity to contribute.

Where a GP is not able to offer any more information, then further questions of claimant limitations or disability should be explored.

 

Claimants should also be offered a choice of suitable options for assessments, for example; by phone, video call, attendance in person or by a home visit. Asking disabled people to travel distance when having to manage medication, health issues and with a carer, pose unnecessary challenges and pressure.

 

Descriptors for PIP.

Personally, I do not believe that the descriptors accurately assess functional impairment. As a

claimant I do not know what DWP define as “functional.”

Another problem to my mind is that the ‘tasks’ are taken in isolation and claimants scored according to manufactured descriptors. The tick box responses on the Capita report did not replicate the form that I had completed. There needs to be more transparency.

 

In my case, I have consistently been advised that given my Neurological condition I must stay very well hydrated. When it is humid etc then my fluid intake must be increased. The shunt that drains fluid from my brain is not controllable and I need regular fluid for my blood to produce more.

However, if I start to slip behind, my cognitive function declines and I am unable to appreciate that I need fluid and my legs become weak. I become disorientated, confused, dizzy and I stop speaking. At this point, I am not able to self-catheterise and a few years ago this led to an emergency admission to hospital. If I do not perform catheterisation when required I become infected and one of the consequences, I am told, could be meningitis et al.


My conditions have a knock-on effect. I could sit and talk at length about their interaction but I hope that I have given an example of, the difficulty of trying to isolate my needs and the help I require

with “Daily Living Activities” to those prescribed by PIP questionnaire.

 

I very much doubt that claimants could break down how their disability or health condition affects their ability to do tasks in isolation. A claimant with continence problems will require assistance in the bathroom, washing their body and undressing all in the same ‘task’ or ‘function’ but, the reality is that the PIP assessment form does not recognise the wider implications to their health if they do not manage, for example, their ‘Toilet Needs’.

 

Similarly, I believed that “Managing Therapy or a Health Condition” (PIP) provided a chance to explain the medical advice I have about managing my conditions and what that actually means to me personally.

I am reviewed regularly by NHS Consultants as my condition is complex and to discuss problems. Aside from my medication, there are lots of extra things to manage each day.

This was ignored during my assessment. Yet I explained that failure to manage results in hospitalisation. Similarly, if I was to fail to catheterise then I could suffer kidney failure, infection or far worse consequences. Infections have been a huge problem for me.

This compounds my comments above regarding descriptors trying to take tasks into isolation, being ignored by the Assessor and the recording of inaccurate comments. In my case the Capita assessor ticked the check box scoring me with zero points for ‘Managing Treatments’.

 

Descriptors for ESA.

In my view they do not assess a Claimants ability to work.

Similar to my view expressed above; you cannot take ‘descriptors’ in isolation in assessing a

claimant’s ‘capability to work’. Health conditions fluctuate and often there is a knock-on effect if not managed appropriately or in accordance with medical advice. The descriptors do not ask how a Claimants ill health affects their daily life and what it means to them.

 

For example; the activity “Standing and Sitting” on the ESA questionnaire.

It is always very difficult for me to explain that I have a shunt draining fluid from my brain that is gravity driven. I have no control over it, it is unpredictable and the only way to control it is positional; either being upright or lying flat. I cannot “leave this until later” or “give it a moment.” Sadly, I have to go with what is happening inside my body. Most of the time I am familiar with my symptoms and I know that when the shunt over-drains, I have no option other than to lie flat. In these circumstances, I do not think clearly, I become weak, withdrawn, I need fluid and assistance. Other times, drainage is not adequate and I have to keep moving and stay upright and that includes throughout the night-time (electric bed).

In my condition, this is a massive thing and has resulted in hospitalisation … continued mis- management could mean Neurosurgery. It is always very difficult for me to judge. I have a number of problems that give rise to pain and lead me to become disorientated. The question for “standing and sitting” only asks how long I can be pain free.

I do not know the “points” score for this descriptor or what the interpretation of this is in terms of my Capability for Work. There is nowhere to explore this further on the form. In any case, as a Claimant I have learned that explanations are over-looked and it feels deemed irrelevant because assessors do not have Neurosurgical understanding.


Relying on Clinician Input without a separate assessment.

I strongly believe that DWP should at least request clinical input from a claimant’s medical team, for example; General Practitioner, NHS Consultant/team or significant person involved in their care.

My utopia assessment process would be a series of basic questions from DWP with a statement about how my conditions affect me and contact details for relevant clinicians.

On return of the completed questions, I feel that, DWP should share the responses with the

claimant’s clinicians inviting their opinion and comment on the information supplied.

The reactions from clinicians would serve as an indication of a claimant’s health and disabilities.

From that point DWP could decide if they need to explore responses further.

I struggle to understand how I can have so many NHS Consultants involved in my care, that have

literally spent hours with me, analysing tests results and performing surgery but, a DWP ‘assessor’ without advanced medical training can make vast sweeping statements without background knowledge.

Prior to my assessment I telephoned Capita several times to request that my assessment be conducted by a “Mental, Intellectual and Cognitive Champion.” Each time I telephoned I was advised that they do not exist.

 

I feel that DWP should obtain input from specialist qualified medical advisors, for example, in Neurology, Cardiology, Psychiatry etc. But also consider information from the numerous charities that support patients with medical conditions. Charities often have forums and discussions with patients that are no longer able to work. A quick glance shows the despair felt by claimants struggling with DWP health questionnaires and how they have daily struggles. Over the years Charities have gained deep understanding (and research) into the difficulties faced by the disabled or ill health members no longer able to work.

 

The drawback or danger is that medical conditions affect everyone differently and they haven’t always been formerly diagnosed. Claimants could be on waiting NHS waiting lists, have a learning disability etc so I believe weight should go to the GP reaction.

 

Appeals data shows tribunals find in favour of claimants.

Combining my previous comments, personally, I think that 76% of tribunals find in favour of claimants because, at assessment stage our comments are ignored. I am not alone to find that my PIP assessment did not reflect what I said during assessment. Even more distressing is that the medical evidence (copies of NHS letters) were not read by DWP or assessors. I supplied documents that indicated the difficulties I face. Had attention been given to the information I initially supplied, then I would not have to had request a Mandatory Reconsideration.

 

Combining assessments.

I think there is a danger of combining the assessment process for different benefits. If information supplied is not considered properly, then a claimant could potentially be denied everything they might be entitled to. Would this mean more questions and form filing for claimants?

 

Managing claims online.

I would like to be able to manage my claim online. So long as there is opportunity to save a little and revisit it later, oppose to form filling in one sitting. But claimants should still receive paper copies so they can show the forms to healthcare providers and carers etc when asking for assistance.

Claimants need the opportunity to apply by post or online because some rely on others to complete the questions on their behalf. It is useful to be able to jot down notes when trying to consider what


should go on the form.

 

Assessments in house.

I only ever hear of negative experiences from others, regarding health assessments being carried out by external organisations. I would question their value for money. If 76% of cases at Tribunal find in favour of the claimant then there is a clear lack of accurate information being gathered by these organisations.

DWP need to gain control of the quality of the assessments and direct funds to paying qualified medical practitioners to carry assessments on their behalf. I would feel happier in the knowledge that my GP practice could recoup finances – I have attended countless appointments in tears and struggled with mental and physical health at DWP assessment time. I do not like the fact that the NHS picks up the pieces when I have had DWP assessment trauma.

I have seen numerous job vacancies for the assessment agencies like Capita advertising for University Graduates to become Assessors for health benefits. The roles advertised do not ask for qualified doctors. That suggests to me that new recruits go to “Assessor” roles with no experience.

 

Impact of applying for PIP or ESA on claimants mental and physical health.

My own experience of applying for health-related benefits has been harrowing. I find the questions intrusive and do not give claimants dignity. Wherever I have spoken to someone at DWP or JobCentrePlus it comes across as though I am not believed or spoken to as if shameful to find myself in these circumstances. I can recall going into a JCP many years ago and it was one of the most humiliating experiences I ever had.

Alongside the need for DWP to establish a claimant’s health, I think that it is overlooked that we often need to ask for advice to help understand the questionnaire. That ultimately means contacting charities like The Citizens Advice Bureau or Scope. Not only does that mean that I have to write down my most personal problems but also share them with a random stranger so that they can assist with my application. The whole process is, degrading from start to finish.

 

When applying for PIP I disclosed that I had been diagnosed with PTSD. It was not an easy admission for me to make. When Capita came to my house to assess me, I was questioned about it. I broke down crying. I found it so hard. I found filling in the form difficult and then the assessor broke me into tears. On the form she recorded that I sat smiling throughout the assessment.

 

Similarly, I was first diagnosed with depression 30yrs ago. The Capita assessment form had a box called “Mental State.” The comments added by the assessor were untrue and incorrect. The comments stated that I did not show any cognitive impairment. Yet, a Neuropsychologist (NHS) carried out a series of cognitive tests that took place over approximately 3 appointments. I have been and remain under the care of the same Neuropsychologist.

 

Living in fear of the questionnaires landing on your door mat is one thing, finding help with them another but to read inaccuracies recorded about you is cruel. The whole process heightens my anxiety and as a consequence at each ‘assessment’ time my physical & mental health go into decline. This is not a throw away comment, it has been noticed by Consultants.

It saddens me that, marked changes in my health occur and I spend lots of times in tears around DWP assessment times. I already know that I will not “recover” nor “get better” but I feel this

immense pressure to “get better” after an employee at JCP once said to me that their doctors could

help me find work that would help me get better. I am not going to get better. My life is a constant


battle of managing challenging conditions and my mental health is not great. I wonder why I have to keep going through this relentless process when I have already supplied countless medical reports that only reiterate what I am saying?

 

After the humiliating PIP process, I have to share my points with inappropriate parties. For example, my mobility is such that I have PIP points. To apply for a Bus Pass I have to share the points awarded with someone at the Local Authority.

If I want to tax my car (mobility exemption) I have to take my paperwork to my local Post Office. Similar experience for attending venues and disclosing I have a disability.

The process for Disabled people has now become “show us the points” you were awarded.

If I want disability support I have to show the lady at the Post Office my points, similarly for local venues etc.

The actual reality of this is that I am forced to share the points I scored for ‘Managing Toilet Needs’? Because, a point-based system has been created to “prove” and enable me to do things. It is thoroughly degrading.

 

I live in constant anguish about the next time I have to go through the ESA & PIP process of proving and discussing my challenges. I live in constant dread of the ‘next time’ I will be asked to discuss personal things with complete strangers. I am tired and drained from the uphill cycle of dredging through DWP paperwork. When really, they already have all the information they need.

 

I was at pains as to whether or not I should contribute to this ‘Call For Evidence’. Just seeing the topics all over again brings out an anxiety within. However draining this has been, I feel as though people like myself (and I am not alone) can be heard and someone might just sit and think how hard and distressing this whole degrading process is.

 

The time constraints placed on claimants is unfair. There have been a couple of occasions where I have been in hospital or surgery scheduled for around the time of DWP paperwork being due.

In 2018 I was scheduled to go back into hospital for further Neurosurgery. No matter how many times I telephoned DWP to explain that I live alone and the hospital I attend is not in my home town there would not be anyone to collect my post. My aunty doesn’t live close either, so it would mean a long journey for her to call to my house to collect post and bring it to me in hospital. I asked that this be noted on the system (I could supply hospital letter) but it was refused. I explained that I would not be well enough to complete the forms and may require a short extension but each time I phoned I was given blanket refusal. It felt horrible. I felt dismissed and as though I was not believed. It is an additional stress when I need to recover from surgery.

Personally, I feel that this also calls into question whether there is any humanity in this process.

 

Another time ESA paperwork arrived 15th December. Straight away I phoned the nearest Citizens Advice Bureau (in another town) for help to complete the form. Because of the Christmas period they were not able to organise a home visit for me until the 12th January but the deadline was 15th January. I posted back the completed form 13th January with Royal Mail tracking and it was delivered the following day. I was drained and distressed from discussing my private medical problems with a man from the Citizens Advice that I had not met before.

On 30th March I phoned DWP to see if a decision had been made because I had no acknowledgement, nor did I know where my form was in the process.

After returning my forms to the end of March I had been taken to hospital twice as an Emergency. The constant pressure of the whole process stays. It is not nice to be subjected to this pressure when


you are unwell. The onus is solely placed on the claimant and there doesn’t seem to be a buffer if

someone is struggling with help to complete the forms.

There is no local advisory services where I live, the Citizens Advice in another town and under pressure serving a large area. There needs to be some sort of intermediary to point claimants in the right direction and offer support.

There is not enough time to request & collate letters from relevant medical personnel. I know my medical teams will support me but, I feel equally uncomfortable having to phone them and ask that they supply me with documentation to prove what I have continually proven and had to live with over the years.

For DWP claimants suffering ill health the whole process is tough and the stress is very real.

My own experience of “Health Assessments” for benefits has been detrimental to my health.

 

 

December 2021