What Being Disabled Really Looks Like — Scope | Disability forum
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What Being Disabled Really Looks Like

Neets
Neets Community member Posts: 93 Pioneering
Hey everyone.

Hope you’re all well in these current times. I wanted to share my thoughts after reading a story about a person who is going through major issues to get the right support.

One way or another most people have a life/health issue myself included. We are often controlled by the government, health services even family and friends. 

I often hear the words quality of life and ask myself what is that? 🙄 lol. When the same organisations, that are suppose to help, bully and miss-treat people. 

Thinking about the following list, what does it mean for you, I wondered.

DISABLED CARE TEAMS!
Social services -assessment yearly

Occupational therapists - assessment proving you need help. 

The NHS teams- Proving you need help

GPs- proving you need help

Government financial support- A military assessment almost every 1-3 years in most cases. Proving you need help

Travel support like blue badges- assessment, proving you need help

Access to equipment for disabilities- assessment proving you need help

Housing- assessment, medical forms. Proving you need help

One out of all these teams, could make a decision. Providing the proof we need help. But doctors and consultants (GPs in particular) letters often are not taken seriously. 
Which leaves that same vulnerable person to deal with all of this. This in itself creates other health issues speaking from my own experience.

I would love one day to sit down with all of them and show them how they have partially added towards my health being affected. 

I would love to here your story 🙏🏾

Cheers

Comments

  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,462 Disability Gamechanger
    Thank you for sharing your thoughts on this @Neets :) It sounds like it's a topic you're quite passionate about. 

    If you could sit down with those teams and give them feedback on what they could be doing better, what would you say? 
    National Campaigns Officer, she/her

    Join our call for an equal future.
  • Neets
    Neets Community member Posts: 93 Pioneering
    well For me I would firstly ask them

    In what way do they feel making a vulnerable person go through assessment after assessment, is helping them improve there health?

    Do the realise that all the do is Instill fear, anxiety. Wondering if this time there benefits may be stopped! There care may be stopped! their support may stopped or they won’t be believed. 

    A GP or consultant should be enough as it’s the condition that affects peoples ability. 

    Sitting back on all I have gone through I wonder if they had just given the right medical care, financial care, and any assistance I needed at that time. If I would be in a different place. But I guess what don’t brakes you makes you stronger lol

    What I can say is I’m passionate because they break peoples souls, there joy or as they say quality of life. I mentioned above, reading a person story and the struggle she is going through. She is actually is my friend (I have her permission) The worse thing is it’s so not necessary to put people through this to get the information they require


    But then they would have to care. Which I don’t think this is the case anymore in the world. 

    Blessings to you and all who reads this. One day we will stand victorious

    Disabling there power over us!!! 

  • HenryEGreen
    HenryEGreen Community member Posts: 2 Listener
    That is really an interesting topic about disabled..there are many things they need to go through.
  • Neets
    Neets Community member Posts: 93 Pioneering
    @HenryEGreen yes indeed. However the results are the same. Even if people went through it with all of them… Why does it need to be yearly. Most chronic conditions don’t get betters Hence why I say GP’s would be the best to advice. But would love to here more. Thank you kindly for replying to this cheers 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    I agree with you @Neets! In the sense that most chronic conditions, unfortunately, don't get better  <3
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • racyguy
    racyguy Community member Posts: 560 Pioneering
    Neets said:
    well For me I would firstly ask them

    In what way do they feel making a vulnerable person go through assessment after assessment, is helping them improve there health?

    A GP or consultant should be enough as it’s the condition that affects peoples ability. 
    Certainly for benefits for the disabled (PIP/DLA/AA) the assessments are not supposed to 'help them improve their health'. They are simply to assess the level of disability and whether that disability fits in with what the benefit is about.
    As for a GP or a consultant being enough to confirm ability, unless you actually live with that professional how are they expected to give evidence of the effects of that disability. They can tell them what is wrong with you but that is it.

  • Cartini
    Cartini Community member Posts: 1,108 Pioneering
    In what way do they feel making a vulnerable person go through assessment after assessment, is helping them improve there health?
    The assessments aren`t designed to help you (generally, not pointing my finger at you) improve health.  They are there to ensure that those people who need help, get help.  Without such stringent checks, any Tom, **** or Harry could apply and take money away from those who really need it.
    As much as a pain in the ar.e they are, I agree with the assessments / checks.

  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Interesting topic having gone through all the struggles myself after my disability I thought wouldn't if be great if there was one centr service or person that could support you with all the support eg ot , housing , benefits , treatment plan , care plans 

    I also thought when my sas passed away how it would be beneficial for a service to help you get through all the protocol like death cert , will , probate , funeral . Having to deal with everything especially for people who have nobody in family to help . They next of kin has enough to do dealing with the loss of loved one never mind all the official red tape 
  • creamcrackered
    creamcrackered Scope Member Posts: 38 Courageous
    Hi I'm new to this forum but this topic is very apt for me right now.
    Firstly, Occupational Therapists assess people and prescribe aids etc so they know what people can/can't do daily.
    If, like me, you have an illness the specialist for that illness can categorise the level you are at (mild, moderate, severe) this then confirms what you can/can't do daily too. Surely either of these can provide us with evidence to scan in to DWP then money can be given accordingly. Dwp can then give us a lettter we can give to council for council tax, to job centre to show can/cant work (assed by HCP as above) and all possible benefits given as applicable. The trouble is DWP don't accept HCP information and it's that which needs to change. I can only go off my experience but so far I don't see why getting benefits and support should be so complicated, stressful, time consuming and be-littling.
  • Neets
    Neets Community member Posts: 93 Pioneering
    @racyguy sorry for the delay and wrong choice of words, this was very hard for me to write. But my point is more about the amount of assessments for chronic health conditions. 
    You mentioned that GP’s and consultants can only give information as they don’t live with you (excuse the you word). But isn’t that the same as the DWP team or in fact with any of them. They can only ask questions and then it becomes a believing game on whether they believe or not. Did you know a lot of the assessors are not qualified or specialist in certain condition for example. I read that one person had chronic mental health and he was assessed by a physiotherapist. 
     So they have no idea what they were going through. I do understand that they need to make sure that claims are not fraudulent and in many ways this is perhaps part of why so many go through such a hard time. Just feel those who have proven conditions  shouldn’t  have to be put through the constant interrogation, yearly. Thank of course for your Points of view. It’s definitely a sensitive area isn’t it. Cheers 
  • elahrairah
    elahrairah Scope Member Posts: 49 Courageous
    The role of the DWP is to prevent you from getting any money.  Money is limited and is far too important to waste on people who should be at work or starving quietly to death somewhere.  There are bankers out there with sportscars that are over a year old for crying out loud.  As to the rest, well, whatever you think of most of those organisations its not possible to suggest that they are funded well enough to do what they do properly.  I've been in the mental health system for nearly 30 years now and the best that I can say is that I have occasionally received a service that wasn't offensively bad.    As to a diagnosis leading to joined up care for a lifelong condition, well that's a pipedream. 
  • Neets
    Neets Community member Posts: 93 Pioneering
    @elahrairah hello there, Yes I agree! What I’ve learnt is they waste so much time and money on unnecessary things. The pipe dream could save money in the end as they wouldn’t have to pay for all of those assessments. But I guess it is what it is lol. Thank you for sharing 
  • Neets
    Neets Community member Posts: 93 Pioneering
    @creamcrackered heya, That is my point right there. Assessment are important. But to interrogate, belittle and insult people that are already going through a hard time, Should not be a part of the protocol as it is right now. Thank you for sharing 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger
    Really powerful!  <3
    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • Neets
    Neets Community member Posts: 93 Pioneering
    @L_Volunteer Thank you for your comment. I would love them to live a day in my shoes. 

    Life for a disabled person is spent proving there Ill. Giving very little time to focus on maintaining a healthy mind so you can deal with the disabilities in the first place. Example this week I had to send in four documents just to get my travel sorted out. I have two assessments one of them which can affect my quality of life all round. This assessment is done yearly. WHY😳 I just don’t understand I get there not there to make me feel better but at the same time if I’ve got a chronic condition what’s the point of them constantly reassessing me when chronic condition is not going anywhere. But what can we do? Things are not looking bright for a lot of people and that not only for vulnerable people anymore. Thank you for listening 
  • Neets
    Neets Community member Posts: 93 Pioneering
    edited October 2022
    @elahrairah just seen I already replied sorry about that lol 

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