Any other help for people who suffer with health but want to live a normal life whilst not working? — Scope | Disability forum
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Any other help for people who suffer with health but want to live a normal life whilst not working?

This discussion was created from comments split from: government cuts.


    JEFFES Member Posts: 6
    Hi there, 
    I'm sick to death of the whole system, the fat cats sit at the top, come up with these pathetic ideas of how to save money, but do they not realise in the long run people will actually fight against their decisions and as well as that they will become sicker in other areas - costing even more!!!
    I am 2 times disabled and really try to look after myself because of the really sick days I can have if I don't take the best control.  But even then, i suffer.
    I am diabeties type 1 on 4 X needle a day and have been since a young child, I am also coeliac which causes havoc when I'm out and feel faint and hardly any of the shops cater for this disease at a normal price.
    I have become unemployed as my last job went into liquidation, I am on benefits but have tried for ESA, previously I fainted infront of a disability assessor who obviously thought I was faking the situation and the assessment that came back was not believable.  I also fainted and was crying in a real mess at an Atos interview !!!! 
    I've also recently been to a PIP assessment and was refused that!!!  My mother works in the C.A.B and advised me to go, she was adamant I'd get help!!!  NOT.
    In real bad health even though I try hard - and no help at all!!
    Now I receive £71 a week and my food comes to approximately £50.  How am I supposed to pay, gas, electric, council tax and other bills to enable me to search for work???
    Unbelievable, the country has become a complete joke!!
    Any body know of any other help that exists for people who genuinely suffer with health reasons but want to live a normal life whilst not working?
    Any benefit.
    I receive pharmacy foods, but don't like, pasta and pizza bases and most of the food they offer is not the costly ones we have to buy that aren't on their lists.
    It's better than nothing but if I were eating these foods then yes, it'd be even better.
    Any advise would be great.  
  • Panda70
    Panda70 Member Posts: 23 Courageous
    It's disgusting, I too now have appeal in against pip decision, reasons the dwp are pathetic, I got 7 pts daily living 4 pts mobility, assessor said I can use Internet, I can read,  I can talk to family face to face, I got there by public transport, used a bus pass and on my own..utter tosh, my partner helped me as I can't use walking sticks or crutches due to pain in Upper limbs, the pass I used was a disability concessions pass for which I had to get my doctor to approve, and the assessment centre was 5 min walk, took me 20 though, from the overhead light rail system we have in Newcastle, along of other reasons, she said I was average build, I'm 5 stone overweight, I was clean and hair was tidy, well of course seeing my fella gets me ready it's just unbelievable....yet I personally know some that blatantly told me they get meds from gp, throw meds in the bin and play up to get money and have never worked a day in their life, so making me angry and bitter, hope you get help soon and get what your genuinely deserve
    JEFFES Member Posts: 6
    Dear Panda, 
    I'm so sorry for you too.  Mine is mainly food related and how on earth they don't do their home work and give extra money whilst it's needed.  I hope to go back into work but they get away with giving you a list of prescription foods that are pretty miserable and not much.  People with Coeliac and I'm intolerant to whey, means all foods basically  unless natural, natural meats, fruits, vegs I can have no problems - everything else is a NO NO and the prices for special foods is astronomical.

    I wish I had the answer for the likes of you and I and all the others that are genuine and I also wish I had the answer for those who are sad enough to cheat the system and they stop the people who really need have what is there for them!!!
    I've heard the same stories of people who get PIP and they go in there, slur their words, act like their in pain and get medicine from the doctor that they don't take however, if you are long term ill and you try your best to live a normal life and try and look good - they instantly see you and think - this one's fine.
    They don't see that 15 minutes before I was in more hell feeling faint and wanting to be sick with the coeliac due to stress.
    But ........... 
    My fingers are crossed for you - definitely.
    If I find anything out (you never know!) I will contact and let you know.
    Bless You.
  • Debbie_Alumni
    Debbie_Alumni Member Posts: 932 Pioneering
    Hi Jeffes,

    I'm concerned to hear that you're not receiving ESA and have been placed onto JSA instead. It sounds as though this is really impacting on your emotional health not to mention the already present physical aspects.

    With regards to PIP, it's becoming almost routine that people are being turned down for this extra source of support. Again I would like to talk this through with you in a bit more detail to see if there is any information I can offer to help you with this. 

    Please do get in touch if you would like to talk about this further.

    Best wishes

  • Debbie_Alumni
    Debbie_Alumni Member Posts: 932 Pioneering
    Hi Panda70,

    It's very interesting (and incredibly frustrating) that your PIP report differs from what actually happened in the assessment. This is a worrying trend that we've noticing at the helpline and there has been some news coverage about this issue of the PIP assessments this week. Scope have commented on this and we will continue to keep this on our radar because it is affecting so many people. 

    Advicenow have just released a new guide called 'How to win a PIP Appeal' and it has quite a lot of useful information on how to prepare for your appeal. It's easy to read and explains things without all the complex legal definitions and jargon. If anyone wants to see the guide you can do so by following this link 

    Good luck with your appeal and if you want to talk in more depth about it please do get in touch.

    Best wishes
    JEFFES Member Posts: 6
    Hi Debbie, 
    Thanks for your response.
    I don't ever like to come across as negative or can't do attitude however, I moved to the area I live now back in September of last year, I was in very bad health with the move and relationship and job issues, however I found a job which was 20 miles drive away and did struggle here and there, but the way I looked at it was - if you don't help yourself then you'll be almost dead.  So the thought of driving and possibly fainting was a hope!  Yes, I know this is very bad, but in my line of work, this is a huge problem.  Finding local jobs and jobs I'm not used to doing - was very difficult because my CV puts me on a level where Employees would think, "She's working for the money and will leave at her first opportunity".
    My hard but fabulous job came to an end 3 months ago approx' as the company went into liquidation.
    My family and close friends are telling me to relax, I need to take things slower and maintain good health.  I fully understand them, but know the system doesn't care any more like it used to.  
    What frustrates me Debbie, is I'd prefer more than anything to be doing a difficult job but one I enjoy! BUT to be in better health.  Like one of my doctors said to me - I have 2 autoimmune difficiency diseases - life will not be as easy as you wish.
    Moving away from London to be closer to family I was turned away from ESA after fainting in front of the assessor whose report was full of lies and to be honest I was that let down and in really bad health and living alone I had no energy to fight my corner.  Same thing with disability, a lady came to my house and I offered her a drink, she was very pleasant, but as we were talking I didn't realise I was going into a faint and often this makes diabetics either feel sick, get very emotional or want to fall asleep.
    I began crying and explained why I had to be excused whilst I get some sugar.  She asked if I was depressed and do I think I should go and see a doctor!!!!!
    She like the ESA assessor had absolutely no clue to my health issues.
    Not being able to afford food is - quite bad.  Especially when there's food banks Oh but do they even consider coeliac food - not as far as I've heard!
    The pharmacy prescriptions are of great help - especially if you eat pasta, pizza bases, and plain biscuits.  All I receive from them is bread and crackers.
    People say "Oh you get your coeliac food free on prescription" and I think, "They do not have a clue, what about the extra cost of meats (can't be the cheaper manufactured meats as they all have wheat in, same as sausages, and all the cheap microwave meals.  Milks, yoghurts, crackers, sauces, cheeses, dips, chocolates, no to them all" but I can have the high priced foods and living on £73 a week with bills to pay is unbelievable.
    Debbie, my mother is an ex nutrionalist and she advises me, she also works in the Citizens advice bureua and her stories are amazing.  Even though I suffer, there are people out of hospital with cancers and heart operations being kicked off sickness payments etc.  It annoys me as the system is so wrong and for people whose anxiety affects their health even more than most - I find it outrageous.  There may as well be no system at all.
    Sorry to sound so ............disheartened, upset and annoyed.
    But thanks for taking an interest.
    Jeffes (real name Jules)
  • Debbie_Alumni
    Debbie_Alumni Member Posts: 932 Pioneering
    Hi Jules,

    I get it, I really do. We hear from hundreds of people each month who are struggling with their benefits and finances. I'm usually absolutely swamped with enquiries (often complex ones).
    I have personal experience too in the way of my 19 year old daughter who fractured and dislocated her ankle on New Year's Eve last year. It was a really serious injury and almost led to her losing her foot. She had finished her job on NYE and was due to start a new one on the following Monday but the accident happened and she found herself in the position of needing to apply for ESA. She's worked since she was 15 so was able to get contributions based ESA but it has been an extremely tough time for her. She's had to deal with the injury itself and try to navigate her way through the system. We had a battle when she was discharged from hospital following surgery to the ankle and couldn't get help at home so that I could return to work. The constant letters, form filling and appointments in relation to the ESA have not helped. There's been no time to recover and sadly 5 months on its impacted on her emotional health quite badly. The prolonged recovery is not helping nor is the lack of information about her injury and rehabilitation. We've become incredibly aware of the extra costs of disability, even though her disability is technically temporary (or so they would have you believe). From prescriptions to hospital parking, hire of mobility equipment, time off work for me to take her to hospital appointments, doctors' appointments, Work Programme, Work Capability Assessments etc. We are of course incredibly grateful for the help she is receiving from her ESA but I often wonder whether it's worth putting her through this process when I can clearly see that she is in utter distress. She feels isolated from her friends some of whom just don't understand how hard it is for her to do the things she used to be able to do. She feels under pressure because she has not been able to return to work and feels that people are judging her or thinking that she's lazy. She can't sleep due to the pain and her mobility is continuing to be a problem. It's taken ages to get a pain relief programme in place after being bounced between the GP and the Consultant, each of them saying that the other should be prescribing the correct medication. I really do feel disheartened too. It tears me apart hearing, seeing and experiencing what disabled and ill people have to go through in order to have a basic quality of life. 
    I've been in front line advice for coming up for about 10 years now and bit by bit I've seen all the various sources of help and support stripped right back to the bone. So many safety nets have been removed. There's been so many changes and barriers to social justice have become even harder to get over. Inequality is getting worse, not better. Sick and disabled people have been demonised by the media over the past few years and punished for their circumstances, none of which can be helped. The support that is there to help disabled people to get work and stay in work can be hard to come by. There is such a lack of knowledge about people's rights and entitlements across the board. It's so hard to find definitive answers and the struggle continues.

    This is why the community is important to me. It's a place where we can stick together, support each other, share the good and the bad times. I'm right behind you all, as are the rest of the team here at the helpline and the wider Scope. Be assured that your experiences and stories are listened to and the important issues are put forward to the right people. We might not be able to change everything or make it better, we can't campaign on every single issue but we are ensuring that your voices are heard.

    To finish, my daughter took to Facebook to address some of the negativity about her injury........
    "Be kind to each other, don't judge someone or something you don't understand or have not experienced first hand. Remember compassion and kindness for your fellow human beings. You never know when you might need a bit of compassion or kindness yourself".

    All the very best
    JEFFES Member Posts: 6
    Hi Debbie, 
    My gosh, I'm the same as most - upset with these individual cases and in general how the system is ran.
    More money should be put in the helping our own sick & disabled people's pot than the pot the government has for the immigration etc.
    Your poor daughter, I liked the facebook comment she wrote.  I hope people that have misjudged felt embarrassed when they read it and it made them think about their words or actions!!!  I must admit, I never to on facebook - it's very usual if you want to promote yourself or find genuinely good old friends but I'm quite private and don't really take on board what others think of me or negativities.  When I first went on facebook, I was commented about and pictures of me put on there by one of my old best friends!!!  I came straight off it.
    I remember when I was younger, my Mum used to get money to help with diabetic food.  But being coeliac is ten times worse and now.....can't even get your illnesses recognised, a friend said to me weeks ago that he's sure doctors are told that they can't sign over so many sick notes a week and they have to try and pretend you're much better than what you really are!!  Made me think about what I've been through at my doctors in the new area I live now.
    My problem is because I try and live such a healthy life all my readings for cholestrol, blood, liver, etc - they're all very good, so this is in itself makes them think I'm great.  But like my others have said, they are not with you when you're out and having to go to a corner and try and get myself back to normality, or when an ambulance was called to work not so long ago, or when I'm so tired with my stomach sticking out and running to the toilet or feeling sick!!  As long as your blood records and everything else is looking good - you're perfectly well!!!  Doesn't work like that when your on 4 injections a day and theres anxieties or enjoyment or stress etc to deal with, this changes everything and more than often.
    I think the major problem is there are so many long term people who claim these benefits that are faking it and they know too well how to perform in front of doctors or government officials, this needs to be addressed and how they go about awarding these benefits.  Maybe they should get people to do a video of their own, you could use a blank face picture or your own, you have to present documentation or proof of illness and fill in all the crucial points and it goes live so the normal people can judge!!!
    I know it would never work but - makes me think the officials to a point need cutting out of the system (but how could that happen and would it be sensible) however, the officials who are running the systems now, are just not in normal minds.  
    Your daughter is in a bad situation (which I'm sure she will eventually come out much stronger and knowing more about what she is really capable of) no fault of her own, accidents are accidents - but why should she have to fight so much for a right that should be hers. 
    My boyfriend says we're more or less getting closer to living in some senses like a 3rd world country, another 10 or 15 years - there won't be any help at all.  We'll just have to live immensely bad lives and suffer.  He says there's nothing you can do to make it better, it will only worsen with time like it has been doing for the past 20 years!  He said even like dentistry and gp appointments, he knows a lot of polish people who get a flight back to Poland to go to a GP or Dentist because they don't trust our doctors or dentist and they way they practise, as well as costs etc
    Anyway Debbie, thank you for explaining your/your Daughter's situation - I believe the trauma will turn around for her - she's only young, but good will come out of this bad situation maybe in a year maybe in 3 year - but it will !!
    I too wish your Daughter, yourself and your community the best Debbie. Positivity always beats Negativity down and comes out shining in the end!!
    Many regards
  • Debbie_Alumni
    Debbie_Alumni Member Posts: 932 Pioneering
    Hi Jules,

    Thanks so much for your kind words, it means a lot :) I'm sorry for the long delay in replying. It's been a busy week here at the helpline and we've been trying to catch up after the bank holiday!

    I thought I'd update you and share a little positivity. My daughter received a letter over the weekend to say that she has been moved to the support group following her WCA. As you can imagine this came as an incredible relief to both of us. It means now that she can focus solely on recovery now. She's got physio today and she's just been prescribed an additional painkiller to help her manage the pain. Emotionally she's still not doing very well but it's still early days in that respect.

    I thought of you the other day when I was in Aldi and saw the range of Gluten Free foods they had on sale there. They seemed a bit cheaper than the other supermarkets. I've been carrying out some research to see if there are any other ways in which you can source cheaper Gluten-Free foods but I imagine you're more of an expert on this subject than I am.

    If you want some advice about your current benefit entitlement, drop me an email at the helpline and I can look into whether you're on the right benefit and if there is anything else you should be claiming.

    Thanks again for your kind words and have a lovely weekend :)


    JEFFES Member Posts: 6
    Hi Debbie, 
    I knew you'd be very busy as it's a hard time for a lot of people suffering.
    Hey I'm chuffed about your daughter being moved to the support group, this will help her recovery brilliantly and I think mentally too.  She may learn it is all a part of learning about a whole load of subjects; friendship, confidence, endurance, growth etc.  She has you too, she'll do fine I'm almost sure (sounds crazy because I've never met either of you, I just have a very strong feeling). 
    Thank you for noticing and thinking about my Coeliac products - I go to Aldi, it's a relatively small one and they don't have any gluten & diary free but I'll try when I get the chance to go to a larger store.
    Thank you for your emails Debbie.
    Please pass the message to your daughter - "You can achieve anything you want if you're mind, heart and imagination play their full time role" and keep the head and chin right up.  An accident is an accident - rebuild often gives us more insight and a lot more strength.  With You by her side and dreams have no end!
    Good luck Debbie and thank you once again.
    The weather's been lovely here today in Runcorn!! :-)
    Hope the weekend includes many smiles and joy

    With Regards

    Juliet / Jeffes


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