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  • FIRST POST
    • Amanda Flannery
    • By Amanda Flannery 3rd Mar 18, 3:18 AM
    • 1Posts
    • 2Thanks
    Amanda Flannery
    PIP system needs reforming, invisible illness
    • #1
    • 3rd Mar 18, 3:18 AM
    PIP system needs reforming, invisible illness 3rd Mar 18 at 3:18 AM
    Hello there,

    I am new on here. I saw some petition have been posted in this section so I was hoping it would be okay to do mine.

    I started a petition in November last year regarding benefit systems, mainly PIP.
    As a lot of us know, it is corrupt; and thousands of people like myself with invisible illnesses are finding it increasingly difficult to get the help and support we need.

    This might be a lengthy post. I and many others are stuck in this awful predicament so I am trying my best to campaign and raise awareness; instead of just moping around every day waiting for change to happen.

    Many people in the UK suffer from invisible illnesses such as fibromyalgia, complex regional pain syndrome (CRPS/RSD), depression, rheumatoid arthritis, chronic fatigue syndrome, borderline personality disorder; autism; just to name a few!


    The PIP system is failing so many people and rejecting them due to a lack of knowledge and experience. The forms are not written out with mental health or other invisible illnesses (with varying conditions) in mind. It is hard to explain a typical day as it varies constantly.
    I myself have been diagnosed with Complex Regional Pain Syndrome, Fibromyalgia, Chronic Fatigue Syndrome, Vitamin D deficiency & Depression.


    I developed CRPS at the age of 23 and have to live with it for the rest of my life now. There are no medications out there to get rid of my pain. I am in pain every single day down the whole right side of my body. I developed repetitive strain injury at the age of 22 and because it was not treated correctly; I now have a condition that is incurable. I was doing an apprenticeship at the time of injury and wanted a career within an office. I have been told my career is over now and I need to look at alternative jobs.
    I have been declined from PIP for two years in a row. I am currently in the process of trying for the third year. I have been told I am not fit for work right now by a private neurologist AND an NHS neurologist.


    I am 25 and my life is that of an elderly person. I struggle to walk around shopping centres. My right arm and leg will give way sometimes and I cannot use them. I struggle to cook dinners and clean the house. Doing these tasks hurt me so much I have to spend the next day laying on the couch recovering. I do not go out far and never alone as I am scared my right leg will collapse.


    I believe the PIP system needs to invest more understanding and consideration when assessing someone with an invisible illness. Just giving people disability allowance isn't going to fix problems. Providing them with understanding psychologists and easier access to treatments such as physical therapy will help many. Allowing people to be able to pay for their own medication and not relying on their partner or family will make them feel a little more independence than what they currently feel at the moment.



    To be denied PIP is like you are being denied the chance to be independent. A lot of us feel like a burden to those who help look after us. A lot of is became ill all of a sudden; one day we can be working doing an 8 hour shift; then the next day we get hit with an illness that just destroys your soul gradually and gradually leaves you housebound most of the time.


    I have seen in the news that people have committed suicide after their disability allowance has been revoked. I have seen that people suffering with CRPS, chronic fatigue syndrome have committed suicide due to not receiving the correct treatment and not being able to cope mentally anymore.


    Please read my letter to Theresa May on the petition site for more insight into myself as a living example of someone the government has failed.


    I am not ready to give up hope. I am not asking to be on benefits forever.

    The only benefit I have ever received in the three years of being ill is Job Seekers Allowance, from around November to January. I was taken off it because I was too ill.


    I would love to get the support I need for a while to get back on my feet and to hopefully be fit enough to be able to cope with a part time job. I would like others; no matter what their illness is; to get the help that they need. We are all humans and we all feel pain. I am sure many other sufferers can agree when I say I would do anything to be healthy and get back into a full time job.
    My GP's have said I am classed as having a disability. They have admitted they are unsure on what to do with me. They have said there are so many people in my situation and that they cannot do anything about it as it is down to the government.


    CRPS affects my nervous and vascular system. The PIP assessor isn't going to know or understand how this affects me, so why should their opinion or verdict be chosen over a fully qualified neurologists?


    I took on a 2 day job over christmas as I was desperate for money and as I had applied whilst on JSA, I had to accept the position. It was retail work for 6 hours on christmas eve and 6 hours on boxing day. I managed to do the 2 shifts just about; was in absolute agony and it took me more than a week to recover. My neurologist had said I will be in so much pain from it but I said to him I can't decline it.


    I am trying for PIP for the third year in a row. I am in agony just typing this out as my wrist has never recovered.


    Please if you would like to help support my situation and others, please take a look and sign my petition.
    I cannot post the URL on here so please just type in google: 'petition for PIP reform' and mine will be the top result
    I have been in essex echo for it and the bromley times which you can read by typing in my name 'Amanda Flannery' into the news section on google.

    I am meeting my MP in the middle of this month to discuss the situation and suggest ideas on how people can get the help they need. The first one would be the assessors not overruling professionals verdicts. Another would be more research into conditions like CRPS because there is nothing done to help us; I really think pain management is a must (had to fight to get it) and hydrotherapy (never been offered it).

    Thank you for taking the time to read about this important issue
Page 1
    • EponaAJ
    • By EponaAJ 6th Nov 18, 4:29 PM
    • 1 Posts
    • 0 Thanks
    EponaAJ
    • #2
    • 6th Nov 18, 4:29 PM
    • #2
    • 6th Nov 18, 4:29 PM
    Hi Amanda,

    Totally with you. I broke a wrist in 2012 resulting in CRPS and spent two years with no income while pinging in and out of hospital. But I did write to my MP for support and got a really good welfare rights case worker who actually spent time in the hospital learning about the condition.

    Like you I had a spell being forced onto Job Seekers and trying to get back working while still in the hospital system. The result was my condition got worse and like you the jobcentre suddenly realised I was really ill.

    Tribunal finally ordered ESA and DLA and back payment. With the welfare rights I have had to repeatedly battle to just get the standard PIP but every chance they get the moron assessors stop my PIP; thus stopping the systems I depend upon to manage my condition and causing more stress to aggravate the condition.

    In 2015 a secondary serious complication of arterial impingement (TOS) was found and the idiots from PIP took away my PIP again..... you see the thick mentality of these idiots is to punish you for getting more disabled! I got my standard PIP reinstated upon appeal.

    Now like you my CRPS has spread to the leg as well; so I'm just getting my fried brain around the concept of a leg that decides not to belong to me. And as punishment for adding to my condition my PIP has been taken away yet again so accelerating again the onslaught of the neuron degeneration.

    So here I am again waiting upon my welfare rights chap to spring into action while I starve and freeze. My MP is also pocking the PIP ant hill from his side.

    But as the papers are full this year about the high courts coming down upon disability discrimination of PIP regarding the mobility element for mental conditions I'm now struggling thro the fog of my pain to take a legal push for getting a disability discrimination case regarding my right to PIP and mobility as I have an invisible disability that crosses all other conditions in how crippling and disabling it is but still is actively discriminated against by DWP.
    • antrobus
    • By antrobus 8th Nov 18, 4:39 PM
    • 16,231 Posts
    • 23,086 Thanks
    antrobus
    • #3
    • 8th Nov 18, 4:39 PM
    • #3
    • 8th Nov 18, 4:39 PM
    There appears to be some misunderstanding here.

    The assessment for PIP looks at an individual’s ability to carry out a series of key everyday activities. The assessment considers the impact of a claimant’s health condition or impairment on their functional ability rather than focusing on a particular diagnosis. Benefit will not be paid on the basis of having a particular health condition or impairment but on the impact of the health condition or impairment on the claimant’s everyday life.
    https://www.focusondisability.org.uk/personal-independence-payment-PIP-assessment-points.html

    It therefore doesn't matter whether or not you suffer from a visible or invisible illness; what matters is (for example) whether or not you need assistance to be able to wash, prepare a meal, walk for more than 20 metres, or whatever. A medical diagnosis only matters to the extent that it provides evidence that supports a particular care need.
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