Local council refuse to help me due to no diagnosis! — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Local council refuse to help me due to no diagnosis!

yoga_catz Member Posts: 1 Listener
So long story short, I've been having chronic abdominal pain since November 2018 following a hospital admission for fluid in my Fallopian tube (all cleared up now so not the answer!) Since the new year my symptoms have been getting worse and my flare ups are making it harder to live normally still. My boyfriend is currently my carer but he's looking for full time work in his graduate industry and may not be able to act as my primary carer if he gets a 9-5 job in London. 

I've contacted my council's adult social care team twice since January this year in order to seek help for my situation as I'm really beginning to struggle with it all. When I'm in a flare up (which at the moment can be most of the time!) I can't move much without assistance, often need help getting around my flat, can't wash my hair/body alone, can't get to my weekend job and can't make meals for myself as it means standing for too long. If the pain gets really bad I often have falls too and if my boyfriend isn't in, I'm stuck on the floor until he's home. 

I've explained all this and more in both assessments but neither were very helpful. The first assessment in January/February came to the conclusion that I should fill an assessment for another local service for help with my mental health (which was not actually helpful either) and the most recent assessment earlier this month gave the outcome that they won't be able to offer me any help at all until I receive a diagnosis.

I've been waiting for months to be seen by different departments and going back and forth with tests, etc but have no answers yet and may not for a long time! So how can I go about getting any help if I don't have the answers to begin with?!

Any advice is welcome, please!


  • SunshineLou
    SunshineLou Member Posts: 79 Pioneering
    Unfortunately I do know that there’s not much hope without a diagnosis.
    My friend’s sister has had numb legs (unable to use them at all) for over 3 years. She still has no diagnosis and can’t get help because of that. 
    Her care still falls on her family’s shoulders. She can’t get any benefits either.
    Diagnosis is key. All I can suggest is push, push, push for that to happen.
    You could try to contact your MP if you think things aren’t how they should be, with your council or hospital care, or the PALS department. Patient Advice & Liaison Service. They’re usually the first point of contact for complaints etc...
    Good luck!
    Hoping someone else may have better news for you though! 
    Lou x
  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @yoga_catz how are you doing today? I am sorry to hear what you have been going through. Has there been any contact from the hospital or Doctor? @SunshineLou has given you some great suggestions. You or your boyfriend may want to also contact your local CAB or Carers UK for advice.

    Please keep us updated, all the best :)
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    Hello @yoga_catz, how are you getting on?

    I noticed @SunshineLou suggested you contact PALs, have you managed to at all? I have found them very helpful in the past.
    Community Manager

    Tell us how to make the community better for you. Complete our feedback form.
  • underdiagnosed
    underdiagnosed Member Posts: 30 Courageous
    Sorry I am unable to advise but would like you to know you are not alone in receiving no support from your local council. My care package was cut a few years ago without them even checking how I was, and my condition had deteriorated as it always does. I now pay privately for care but am limited as to how much I can afford. I hope things improve for you very soon.
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    Hello @underdiagnosed and welcome to the community. :)

    I'm sorry to read that you've experienced cuts to your care package. Do you have much support at all? 
    Community Manager

    Tell us how to make the community better for you. Complete our feedback form.


Complete our feedback form and tell us how we can make the community better.