Written evidence from Anonymous HAB0150

I only learned of your inquiry yesterday so apologise for not being able to answer specific questions.  

I write to you as I would like you to understand what life is really like for me on benefits.

I have been disabled for many years.  I have had to fight for ESA and PIP and for the past 2 years have been trying to access help from Adult Social Services.  I now struggle to read, hear, write, sit, stand, breathe, get to the point when communicating, sometimes with speech, with showering, sleeping, eating, cooking, walking, and am in chronic pain in various parts of my body all the time.  For the past 13 years I have been unable to work and I have deteriorated every year.

Here are some of the difficulties I have faced and I had to have help to write this statement for the Inquiry:- 

ESA 

When I first got ESA (approx 2009) I had to go to the Jobcentre in Cheltenham.  I live alone and have no family to support me.  I was a single parent struggling to make ends meet and pay for childcare.  There is no parking there.   I therefore had to pay to park in the NCP car park and in my giddy, breathless, confused and chronic pain state, walk alone to the Jobcentre carrying my paperwork and medical supplies and was expected to stand until told where to go to be seen.  The back pain alone was difficult.

On several occasions the security guards stopped me and asked if I was ok as I was breathless and literally falling apart.  They kept changing the processes, who I was to see, and which part of the building I had to go to.  For someone that is in chronic pain it is difficult enough, but I was also confused, struggling to breathe, struggling to walk and struggling to hold it together.  Having one person to deal with people with numerous health needs/vulnerabilities would have made my life less stressful.

Some of the staff would shout my personal information across the room.  I would often get leered at and I would often have to walk through a crowd of people smoking outside.  

I have asthma, so this would mean I couldn’t stop coughing.  

I also could not manage to climb the stairs when the lifts were out of order (a regular occurrence). 

In addition, being a very brittle diabetic, I would hypo whilst just physically getting there.  

I was also coping with the fear of being stalked and my child being abducted from school (I was going through a very horrendous marriage/divorce).  

So just having parking for vulnerable and disabled people would make a huge difference. 

I would have to go to the Jobcentre for all meetings/to deliver documents or to the Post Office to pay for and post evidence (as I had numerous conditions, mine was bulky & I incurred printing costs).  The cost of all of this meant I was unable to take my daughter for days out like her friends, or pay for additional courses/lessons.  

I was eventually told I could get copies made at the JobCentre but there were so many questions and almost annoyance if I asked, and paperwork would be returned out of order, or I would be refused.  I would have worked every spare second to sort it out, as my head was all over the place.  I feel an allowance should be made for people that have to provide bulky evidence, and also for those who are really too unwell to make it to the Jobcentre safely. 

After many years of battling, I finally got help from the CAB and in my last application I am not sure what happened (I was not really understanding what was going on) but I seem to have been given ESA without any more assessments – or at least I have not had any for as long as I can recall (& certainly not since my last PIP assessment in 2018).  I cannot tell you what a relief that was.

Unfortunately, the lady at the CAB dealing with my case never returned my file of papers (although she agreed to do so many times & twice I attended to collect - having made an appointment - but she was unavailable).  I therefore do not have copies of my signed paperwork and she is leaving this month.  She has promised to pass my file to the next person who will be visiting me at my home to help with my PIP but she has also promised to deliver it herself previously.  

It would be far easier, especially for people with cognitive/memory problems to be able to access a copy of filed personal documents from the benefits departments dealing with them. 

It seems ridiculous that the same personal evidence must be produced on every occasion that a benefit needs renewal: each renewal should be a continuation of the existing claim, with the Claimant’s relevant information carried forward each time.

For all benefits I have tried to get help.  I have had to wait many months to get any help from the CAB.  It seemed there was only one Specialist Advisor (including through Covid in 2020) who covered the whole of [redacted].  It is hardly surprising it was so difficult to get an appointment.  

I was advised there was no-one in the area from other groups that could help and certainly none that could manage home visits (which I now require).  I tried many organisations including Scope, PoHwer and Green Square.  I managed to drive to the [redacted] Council offices on good days and that is how I eventually got help from the CAB.  This means, people with disabilities struggle to get any help at all.  (I now also have hearing, visual, cognitive, heart and energy level difficulties as well).  This needs to change because it is not an equal or accessible system.  

I struggle to use the internet not only because of visual/cognitive problems/chronic pain but also because I now forget how to perform basic functions like attaching photographs.  

PIP 

PIP is something I have also had to battle for.  Initially the assessors would not believe a word I was saying and would not have been supplied, or would not have read, my file of papers (my evidence). 

I would feel as if I was being treated like dirt; often forcing me to do things that were very painful and then blatantly lying in their reports (having suffered years of abuse, I did not realise I could refuse).  I did not initially realise that the reports had to be written within minutes.  I guess that is where the assessors had no time to read or be accurate and so got muddled and guessed a lot of what they wrote.  Many a time, I was refused permission to see what was being written about me.  I now feel I have to have a witness with me at all benefit-related meetings.   

As a result of these assessments, I would come away broken and feeling very short-changed.  The process took too long and the fear of not being awarded any money, let alone the correct amount, filled me with dread.  (It still does).  

This was on top of the added stress, the lies in the report, the failure of the DWP to answer telephones, the rudeness of some staff, etc.  There was absolutely no respect.  How can government departments expect respect, or teach others respect, when treating people worse than cattle? 

I had to appeal every time and at each of my last 2 Appeals I was awarded the maximum 5 years.  The first year was usually completing and waiting for a decision, then there would be the Appeal, then there would be waiting for the final decision – all with lengthy delays.  So, for almost 3 years in every 5, I would be a nervous wreck.  This not only seems heartless, but a waste of public funds and it made me worse.  It was like being repeatedly raped by someone you trusted but being unable to tell anyone, and then when you finally did, not being believed. 

It would be far cheaper for people with long term conditions to automatically be granted longer term (or permanent awards).  There could be an annual letter/email going out asking if there are any changes or reminding to report any of a list of changes. 

Conditions like Type 1 Diabetes (where there are visual or neuro problems) could also be given permanent Awards because, in 50 years of having the condition, I can tell you there is still no miracle cure.  

For conditions like Fibromyalgia and ME/CFS where people struggle to travel, there should be long term or permanent Awards and there should also be home visits for conditions where this is merited together with an understanding that not having this basic support is damaging.

There should also be more hands-on help available at home for people with disabilities who struggle with things like paperwork and technology.

On top of all this, I would be struggling with Blue Badges, the DVLA, ESA, and also trying to get assistance with Housing, Hospital and Therapy matters and trying to care for myself as well as ailing family members or trying to be a decent mum to my daughter with minimal or no support.

Furthermore, all meetings should be recorded by the DWP and automatically copied to all parties unless the Claimant says there is no need.  This should be an accessible copy (so people did not have to buy special equipment to access it) and produced free of charge to those who cannot afford it.

At my last Appeal, my CAB lady said she could not attend the night before the hearing.  My partner at the time was not well (getting over cancer and unbeknown to us at the time, suffering a massive brain tumour).  He was therefore all I had at the hearing. 

I struggled to walk from the [redcated] car park to the building (it was uphill & I was breathless/in horrendous pain/suffering palpitations, imbalance & nausea/confusion & struggling to see when I got there.  I was petrified and broke down in tears.

After the hearing, I realised he had not taken notes as I needed him to.  During the hearing, the Panel decided I was on the border between Standard and Enhanced Mobility (I was again awarded Enhanced Daily Living but only Standard Mobility). 

I had been trying to get DCM to supply and fit aids to my car but due to staffing difficulties, several appointments were cancelled.  They therefore told me I should write and let them know when my aids were fitted and I would automatically be moved to Enhanced Mobility.  I did not understand this because I felt legally, if I was in need, whether I had the aids or not, I should have been awarded the points. 

I told my CAB lady about this after the hearing (when I got home and discovered my partner had not written any notes).  She advised, we could discuss this later.  I therefore had no idea who the Panel were, what I needed to say, or how to deal.  When I contacted the CAB lady, she said, as she was not at the Hearing, she could not assist!

I did not understand the process, was struggling to cope without help, was struggling to deal with my partner’s poor health too.  I did call the DWP about this but I was ignored and, on another occasion, told I would have to formally reapply.  

My CAB lady was contacted and she said that as I had struggled so much to apply, she felt I would be better waiting.  Then Covid happened, I was isolating, my CAB lady had a death in the family and Covid, I was learning my partner (who had been hospitalised for 18 months) was paralysed and couldn’t swallow, speak or remember and I just couldn’t manage.  

I believe, legally, I should have received the Enhanced rate of Mobility and it should have been handled better and I should have been afforded more support.  Had there even been enough CAB support, particularly attendance at the Hearing, then I would have had a witness who could have simply helped me apply for what I was entitled to.  That would have taken so much pressure off of other things. 

I have now been sent a Renewal.  I cannot manage to complete it.  The CAB lady who promised to assist me is leaving.  I am trying to do what I can and hoping someone else at the CAB will be able to help.  This is not fair treatment. 

In addition, it took a whole day to apply for an extension – line problems at the DWP end!  My CAB lady said it would take 6-8 weeks before I could get CAB help and I should ask for an extension on this basis.  When I finally spoke to a chap (Mohammed), he said I could only get two weeks and would have to keep re-applying! 

I have tinnitus, pulsatile tinnitus, silent sound deafness, noise and light sensitivities, various visual problems and had not long had my 1st cataract operation (2nd due next month), as well as triple reading vision in one eye, blurring in both when reading/concentrating, constant headaches and migraines, Diabetes with diabetic retinopathy and neuropathy, Asthma, Chronic IBS, Acute Angle Closure Glaucoma, Ischaemic Heart Disease, Osteo Arthritis, Cervical Spondylosis with Spinal Burring, Falls Risk, Fibromyalgia, ME/CFS, lots of other problems, and a lengthy list of drug allergies/sensitivities which meant I could not tolerate any pain relief other than Paracetamol, and could not take antihistamines or NSAIDS. 

As I am so drug sensitive/intolerant, I need to find therapeutic and distraction methods of coping.  This is not available on the NHS and the costs should be taken into consideration for all benefits.

In addition, if therapeutic benefits that actually helped were included in this way, I feel not only would it help reduce stress/anxiety levels, but it would help take the strain off the NHS.

The PIP system (and others) is therefore severely flawed.  It is like asking a deaf, dumb and blind person to see and speak without aids/assistance!  

People like me have no idea where to go for assistance and guidance information is usually in small print or only accessible to people who can use the internet properly or can mobilise. 

It does not help that GPs are so overwhelmed that they do not have time to help provide evidence that includes all my conditions and difficulties and how I struggle to even get out of bed in a morning, or how much longer and how energy consuming a basic function will be for me.  These are things I forget to include because I am simply trying to get the job done.  

Adult Social Services (not the area of your Inquiry, but informs you further)

I have been trying to get help with Care since early 2020.  (My partner left in June 2020 and he used to help me).  The lady that came to assist me was gobsmacked I had not been getting any help (she was of West Indian origin).  She in fact agreed that I did not need the 6-week initial assessment, as it was more than obvious I needed long term care.  When asked Adult Social about this, they told me the lady that came to see me did not know what she was talking about!  

The first year was spent going back and forth and giving me no assistance with understanding the process at all and then being sent a letter that seemed to say I was not eligible!  I intended to complain and wrote saying I wished to, but I did not receive an acknowledgement, could not understand the process and was not well enough to cope without support.  So, I re-applied in 2021.   

I was given a male Social Worker who also agreed I was Eligible.  He did not explain the system fully either.  He visited my home and, on the 2nd visit, said it was to finish his Needs Assessment (Eligibility) and he arranged for the FAB Team to visit. However, he never let me have the eligibility info so I had no idea what I was deemed entitled to.  This went on for almost a year and I could get no help from anyone and certainly no-one that could visit my home and offer any physical help with reading and document prep.  

With the help of friends and a private carer, I managed to use all my energy to keep piles of documentary evidence for Disability Related Expenses.  Most were ignored and I was expected to live on approximately £90.00 per week plus PIP standard mobility (this included paying all bills, bedroom tax for my daughter/carer’s room, repairs, cleaning, gardening, dietary costs, clothing, aids, therapies, insurances, car maintenance & running costs).  

I then managed to get a lady to help online for a few weeks.  She managed to get the Social Worker to send his Eligibility Statement.  When it was received, it was incomplete (despite 3 home assessment visits).  There was no indication of what I was awarded or how many hours of care I needed and some of my needs were incorrect.  It was basically ‘a draft’ although my Social Worker insisted it was completed!  He agreed to go through it and then send me an amended version.  This has not materialised.

She managed to get the Social Worker to meet once, online, as she was based in London.  I could not keep her support as she was not being paid.  (I feel the Council should have offered to do so when mentioned because she was actually the only person to support me with my claim).  She told my Social Worker he was not following the correct procedures or meeting my needs (I feel this seems to have been ignored).  He said at the meeting that we needed to meet again to do another Eligibility and Care Report (when pushed).  

We have arranged a meeting on the 30th May.  I have no benefits advisor to assist me.  I doubt he will have even completed his Eligibility by then as I have not received the agreed final version that he assured me he would email after our meeting.  This just appears to be wasting my time, energy and public funds as well as causing me needless anxiety and being left to cope without any idea if/when I will get assistance with my care which I desperately need. 

I truly believe, Adult Social are behaving like this because they know I am eligible but they have no money to help support my care.  There is no other reason for not completing my Eligibility or Care Needs Assessments, and I believe without completion, I cannot be paid or move forwards.  I see this as fraudulent /discrimination and my health, cognition and mental health has deteriorated further as a direct result. 

CONCLUSION:

This means, although I put on a brave face and try to help others, every day I now wish I was no longer alive.  Every day is a massive struggle for me. 

When I ask for help, I am told email X, write to Y, or complete form Z.  

When will the Government realise, although I look and sound ok most of the time, functions like this, with my disabilities, mean I do not sleep much for many nights trying to do so, and I struggle to get to the point, and my chronic conditions get much worse (increasing pressures on the NHS)?  Even MPs do not have the time to visit people like me at home, like they used to.  Therefore, people like me have become invisible! 

Whilst some people working were offered furlough, disabled people (on legacy benefits) were not given extra funds to provide extra care, travel expenses, help with shopping, online therapies, companionship, etc.

Our costs went up, carers became very hard to come by, our bills went through the roof.  Many of us live alone so we became more isolated. Many of us live in rented or Housing Association accommodation and are on such low incomes we do not pay Council Tax – so we are not entitled to the £150 Council Tax Rebate.  If we are to get any help it would be from the ‘special council fund’. I was assured a ‘call back’ months ago, but it has not occurred. There is no information what I should do and it appears the £150 rebate will be sorted out before anyone like us will be.  It’s as if we don’t matter.

I cannot even use a Food Bank if I needed to because of my strict dietary needs/allergies.  I would also need assistance collecting/carrying from wherever my nearest foodbank would be.

I also have to pay to get jobs done around the house and fences and garden maintained, etc, that used to be jobs I could manage myself or with the assistance of my partner.  As I live in rented accommodation, not doing so could put my tenancy at risk – this should be accepted as a Disability Related Expense.  

There also has to be an acceptance that some conditions are not assisted by drugs and people like me have to use therapies as aids/pain relief. Therefore, therapies like massage, dietary requirements, should be considered as Disability Related Expenses too.

There is no Equality in the UK if you have invisible disabilities, live alone, are in an area where support at home is severely limited/non-existent.  On top of that, unless you are bitter and twisted, if you dare to try and make the best of things or smile rather than pull everyone else around you down, you are deemed to not require support.

Recently, I experienced blood pressure levels of 214/98 and 200/84 (stroke/heart attack levels) but I did not call medics because the hospital queues were soul destroying for someone like me.  I remained on my own, called a friend for advice, & tried to rest & remain calm to avert a worsening situation.

As a result, the benefit agencies will likely believe we are not as ill as we are.  If we have to stay in hospital, we have to report it (stressful process of communicating with the DWP when unwell).

Fortunately, I managed to take photographs on my mobile of two of those results! When brain fog is bad or energy does not permit, this is usually forgotten.  

I am now in a state of panic.  

I have a meeting with my Social Worker on the 30thMay, 

I need to get my PIP done & delivered with evidence by 1st June.

I have had to delay my cataract operation (from 30th May to 15th June).  

I am not coping.  I am crying every day and barely sleeping and have not managed to find the time to do the therapies I need to do daily to function. 

I am hoping this will help you understand why expressing my difficulties is not easy.  I need to relax to live, and yet I have no energy or time to breathe.  I am one of many.  I have no quality of life.  

I apologise that my email is long but I hope it helps identify some of the genuine difficulties faced.  I could say so much more, but this is all I can cope with.

 

May 2022