Fibromyalgia and struggling financially — Scope | Disability forum
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Fibromyalgia and struggling financially

bakedburr Member Posts: 3 Listener
I'm registered disabled due to RTA 1991, always received enhanced rate mobility,April this year I was diagnosed with auto immune desease Fybromyalgia and raynards phenomenon which is very dibilitating, I was advised by DLA  to request PIP early to get more financial help for treatment to help symptoms,homeopathic treatment which you cannot get on NHS, I went to first assessment where I was not asked at all about condition of Fybromyalgia the young lady did not write correct answers to the questions she answered her question with inaccurate answers, using her own words, there for I was refused, I wrote mandatory reconsideration letter where I was refused again much to my horror,I've appealed to a tribunal which I'm told could take months, the stress this as caused me as had a profound affect on my illness I'm constantly suffering asthma and anxiety attacks,  I have a registered disabled car which I've always paid with my mobility money, I'm now without enough none to pay got this, had to stop my hydro pool treatment and acupunture unable to get to appointment PIP awarded me higher rate care componate and took away my mobility I've become very depressed and no longer see any future for myself I've sold all my jewellery and owe my friends a lot of money to keep my car, please can you help me as I don't have any immediate family for support and don't know which way to turn , I have nothing left and cannot ask my friends to keep paying my mobility, and can no longer pay for my career. 
Kind regards

[last name and contact details removed by moderator]


  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @bakedburr
    Welcome to the community! I'm afraid it's against the rules to share personal information such as Home Address and Phone Numbers. I am terribly sorry to hear what has happened to you, unfortunately I don't know how to advise you but I'm sure another member of the community will be in contact with you soon to offer their advice. Please don't hesitate to let us know if you need any further help :)
    Disability Gamechanger - 2019
  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @bakedburr   Pleased to meet you welcome.

    Sorry what has happened. Thank you for sharing.

    As my friend @Ami2301 has said some one from our community will advise.  Also add to that a member of our team.

    Please can I ask have Motability been in touch. You need to talk to them. I assume have they sent you a letter saying about the ending of the car lease agreement.

    In the letter offer a range of options. I believe you can buy your car with a fixed price. They do offer.

    I apologise if I have misunderstood what you are saying but I do think if you have bought your car and you are going to end up in debt. Then you need to speak to your friends about some sort of repayment.  I am very much aware the value of friendship. It is important.

    I am very concerned that you have to sell jewellery and now feel depressed and having mental issues.

    Please understand I have and are in a similar position to you.  Been on the scheme twenty years plus.  Lost my car yet I have decided to use the financial incentive they have given me. The scheme providers.

    I know Motability send you a booklet with many options and solutions to your transport requirements.

    These are varied. Including charities, other forms of transport like Dial a ride, Taxis.  Look on line. for other suggestions.

    I am sorry about missing certain treatments. I do know there are services available in any area. For those wishing to go to the doctors, appointments and other related services. I am looking into this myself.  Find on line.

    What I would suggest is you need to think things through. I am afraid for you and realise that I can not afford a car. There are other ways and means to get about.  Not and does not have to be buses. I can not use a bus. So I would if that were me. Very polite and helpful to my friends. Offer a fee to get about.  Cost of fuel.  

    Obviously you are in this situation owe them a lot of money. That does really concern me. I am a caring gent and hate to see any one like this.  Then if they are asking for money. I would try to make amends and repair the relationship. Offer a sensible repayment plan.

    Doing a lot on line.  I would advise shopping, collecting prescriptions, utilities, other services.

    All I can say is to look at our tribunal advice and benefit information.

    I understand this is stressful and I am like yourself have anxiety but I have learnt to adapt.  Have fears like every body else and hope I have been offering words of comfort and sensitivity.

    I am also aware of the ordeal of assessments.  All our community wish you a successful outcome.

    Please take care

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @bakedburr, and a warm welcome to the community!

    Thank you for sharing this with us- I've removed some of your personal contact details due to community guidelines, but I really hope we can help. We have lot of members with fibromyalgia and similar conditions here on the community, and I'm sure many will be able to empathise with how tough it can be to live with.

    Wishing you all the best with your appeal- you may be interested in Scope's guidance on DWP appeals to help you prepare. If you're struggling in the meantime, it may also be worth searching for any grants/hardship funds you may be eligible for, using a search such as this one. It may also be worth looking into NHS HC2 forms, to help with your health costs. Have a look at the links, and do come back to us with any questions. I hope today's as kind as possible to you!
  • bakedburr
    bakedburr Member Posts: 3 Listener
    Hi there, thank you soo much for all kind words of support plus really great advise,I have a registered disabled car but not on mobility however that's what always paid for my car, my mobility which I have been on for many years, it was on the DLA advice that I applied early to pip for extra help with treatment that you cannot get on  NHS, I sustained many injuries in car accident,spine issues constant pain, Potsdam,anxiety and depression losing all my immediate family members including sibling very close together, the trauma to my body as given me Fybromyalgia a very debilitating desease,chronic pain and fatigue,some days not being able to lift myself up, you can't see this desease,so it is difficult for people to understand what it is I'm dealing with,I find it very hard to see PIP awarded me higher rate care components and took away my higher rate mobility, my friends have been amazing , I'm with step change to help pay back debtors I'E credit cards,I owe my friends they have been amazing, I must say since this has all begun my anxiety and depression has worsen bring on many flare up of Fybromyalgia,it's caused me more pain than I care to think about, and now on very high dose of anti-depressant, and stay at home feeling detached from the outside world, thanku so much to everyone who took the time to read my words, this is so very wrong what they are doing, !! Take care guys.
  • bakedburr
    bakedburr Member Posts: 3 Listener
     Sorry for my personal details ,my head is very foggy and unclear most of the time.


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