Single sided deafness. Do anyone know where I stand with this when it comes to renewing my PIP? — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

Single sided deafness. Do anyone know where I stand with this when it comes to renewing my PIP?

Options
Sophs50522
Sophs50522 Community member Posts: 15 Listener
edited March 1 in PIP, DLA, and AA
I've recently suffered from sudden hearing loss in my one ear. Its a profound loss so an hearing aid won't help and I'm not eligible for a CI because i have moderate hearing in my good ear. 

I'm struggling from really bad Tinnitus and voice distortion on top of a severe one sided feeling loss.

It's impacted me physically and mentally. 

I currently receive PIP at daily rate care and low mobility. 

Do anyone know where I stand with this when it comes to renewing my PIP? 
It's severely impacted my mental health. I get PIP for severe mental health and now I feel this have truly physically disabled me and that my hopes of ever returning to work are out the window. 
Ashamed to admit I've thought about suicide! 

I genuinely don't think I can cope living like this much longer!
My hearing kept me sane on my bad days. Now I can't watch tv properly or talk to people without have a mental break down! 

Any advice would be appreciated. I know it may sound pathetic to some but if you knew my history I promise you'd understand. 


Comments

  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,912 Disability Gamechanger
    Options
    Hello @Sophs50522

    Welcome to the community! :) I am so sorry that you are going through such a tough time with your health. I just wanted to check in and ask if you are ok and if you have support around you?

    Please remember there are some great organisations out there that will support you like Samaritans if you need someone to talk to <3 
    Hannah - She / Her

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
    Want to give us feedback? Complete our feedback form now.
  • WhatThe
    WhatThe Community member, Scope Member Posts: 959 Pioneering
    Options

    Don't wake a sleeping dragon is my advice. Wait until you hear from them.

    Keep notes about your recent hearing loss in the meantime. 


  • yanni
    yanni Community member Posts: 91 Pioneering
    edited March 1
    Options

    @Sophs50522 I am so sorry that you are going through this, I have severe - profound loss in both ears and tinnitus. I have had hearing loss all my life but the tinnitus was triggered by medication 10 years ago. I went to some very dark places when it started as well, you have nothing to be ashamed of and it is not pathetic to be struggling with what you are going through.

    The tinnitus will become bearable. It will take some time but your brain will learn to ignore it most of the time.

    (You won’t believe this anymore than I believed the person who said the same to me when mine started :) )

    Obviously you are having a horrible time of it at the moment and stress makes it worse so it is a bit of a vicious cycle but it will get better.

    The key seems to be to distract your brain from hearing the tinnitus sound.

    There are tinnitus maskers which ‘covers’ the tinnitus for a while so you have a rest from the tinnitus noise. You Tube has white / brown / pink noise videos so check these out and see if they help.

    Try to avoid absolute silence because the tinnitus will seem louder. Have some low level noise that distracts you from the tinnitus. Don’t be tempted to blast loud noise at it as you will only make it worse.

     As time goes on you will find you notice it less and less.

     I am wondering who told you that a hearing aid is no use?  If you have any hearing in your bad ear it is worth asking for a second opinion about a hearing aid. I have profound loss in one ear and wear a hearing aid in both ears. I can’t understand speech in the profound ear even with the aid but it gives me some background noise which reduces the tinnitus a bit and makes things a bit more balanced.  Perhaps you can ask your GP to refer you to another audiology department at a different hospital?

     

    When you are ready,read up on communicating with someone with hearing loss so you know what you need other people to do to make it as easy as possible for you to understand them. Then explain this to people. Most people want to help if they know what to do. 

    Research the assistive listening devices and technology such as speech to text translators that are available.

     Employers are required to make reasonable adjustments to enable you to do your job. Depending on what you do for work it may be possible to adjust your existing role or it may be necessary to look for something else work-wise. I have had some very supportive bosses and colleagues and some not so but deaf and hearing loss people do work.

     

    As you probably know PIP is about how your condition affects you rather than because of any diagnosis.

     If you are having difficulty understanding speech reliably then you should receive points under the Communicating Verbally activity.

    If you can’t hear traffic approaching you should receive points under Mobility Activity 1 for needing someone with you when undertaking a familiar journey to keep you safe and also to help you communicate if something unexpected happens (hearing a tannoy announcement about a change of platform for example).

     There may also be points for Washing and Bathing if you are unable to hear a smoke alarm and for Engaging with Others if you have difficulty interacting with other people.

     You need to have had the difficulty for at least 3 months and expect it to last at least another 9 months.

     If you have any questions please come back and ask. 

  • Sophs50522
    Sophs50522 Community member Posts: 15 Listener
    Options
    I've recently suffered from sudden hearing loss in my one ear. Its a profound loss so an hearing aid won't help and I'm not eligible for a CI because i have moderate hearing in my good ear. 

    I'm struggling from really bad Tinnitus and voice distortion on top of a severe one sided feeling loss.

    It's impacted me physically and mentally. 

    I currently receive PIP at daily rate care and low mobility. 

    Do anyone know where I stand with this when it comes to renewing my PIP? 
    It's severely impacted my mental health. I get PIP for severe mental health and now I feel this have truly physically disabled me and that my hopes of ever returning to work are out the window. 
    Ashamed to admit I've thought about suicide! 

    I genuinely don't think I can cope living like this much longer!
    My hearing kept me sane on my bad days. Now I can't watch tv properly or talk to people without have a mental break down! 

    Any advice would be appreciated. I know it may sound pathetic to some but if you knew my history I promise you'd understand. 


    yanni said:

    @Sophs50522 I am so sorry that you are going through this, I have severe - profound loss in both ears and tinnitus. I have had hearing loss all my life but the tinnitus was triggered by medication 10 years ago. I went to some very dark places when it started as well, you have nothing to be ashamed of and it is not pathetic to be struggling with what you are going through.

    The tinnitus will become bearable. It will take some time but your brain will learn to ignore it most of the time.

    (You won’t believe this anymore than I believed the person who said the same to me when mine started :) )

    Obviously you are having a horrible time of it at the moment and stress makes it worse so it is a bit of a vicious cycle but it will get better.

    The key seems to be to distract your brain from hearing the tinnitus sound.

    There are tinnitus maskers which ‘covers’ the tinnitus for a while so you have a rest from the tinnitus noise. You Tube has white / brown / pink noise videos so check these out and see if they help.

    Try to avoid absolute silence because the tinnitus will seem louder. Have some low level noise that distracts you from the tinnitus. Don’t be tempted to blast loud noise at it as you will only make it worse.

     As time goes on you will find you notice it less and less.

     I am wondering who told you that a hearing aid is no use?  If you have any hearing in your bad ear it is worth asking for a second opinion about a hearing aid. I have profound loss in one ear and wear a hearing aid in both ears. I can’t understand speech in the profound ear even with the aid but it gives me some background noise which reduces the tinnitus a bit and makes things a bit more balanced.  Perhaps you can ask your GP to refer you to another audiology department at a different hospital?

     

    When you are ready,read up on communicating with someone with hearing loss so you know what you need other people to do to make it as easy as possible for you to understand them. Then explain this to people. Most people want to help if they know what to do. 

    Research the assistive listening devices and technology such as speech to text translators that are available.

     Employers are required to make reasonable adjustments to enable you to do your job. Depending on what you do for work it may be possible to adjust your existing role or it may be necessary to look for something else work-wise. I have had some very supportive bosses and colleagues and some not so but deaf and hearing loss people do work.

     

    As you probably know PIP is about how your condition affects you rather than because of any diagnosis.

     If you are having difficulty understanding speech reliably then you should receive points under the Communicating Verbally activity.

    If you can’t hear traffic approaching you should receive points under Mobility Activity 1 for needing someone with you when undertaking a familiar journey to keep you safe and also to help you communicate if something unexpected happens (hearing a tannoy announcement about a change of platform for example).

     There may also be points for Washing and Bathing if you are unable to hear a smoke alarm and for Engaging with Others if you have difficulty interacting with other people.

     You need to have had the difficulty for at least 3 months and expect it to last at least another 9 months.

     If you have any questions please come back and ask. 


    Thank you so much for that, it was comforting to read. 

    I've been struggling, extremely bad, having two young children and having to deal with this change have been challenging. I really don't know how I've got through the last few weeks. 

    I know being deaf doesn't impact people's ability to work but honestly my mental health was extremely really bad prior to this and its affecting me on a whole different level. I genuinely feel I don't think I'm ever going to be mentally well enough to work again. I can't even get out of bed. Then I have the fear of being forced into work and not be able to cope with it and my children are impacted hugely.

    I appreciate your support, apologies for the late response, I've just been trying to come to terms with what is actually happening to me. 


  • Sophs50522
    Sophs50522 Community member Posts: 15 Listener
    Options
    Hello @Sophs50522

    Welcome to the community! :) I am so sorry that you are going through such a tough time with your health. I just wanted to check in and ask if you are ok and if you have support around you?

    Please remember there are some great organisations out there that will support you like Samaritans if you need someone to talk to <3 
    Thank you, I am thankful I have great support around me. I do still struggle though unfortunately 
  • Sophs50522
    Sophs50522 Community member Posts: 15 Listener
    Options
    WhatThe said:

    Don't wake a sleeping dragon is my advice. Wait until you hear from them.

    Keep notes about your recent hearing loss in the meantime. 


    Ah yes I thought so. Will keep notes thank you. 
  • yanni
    yanni Community member Posts: 91 Pioneering
    Options

    @Sophs50522

    Sorry I somehow missed your reply!

    I understand your concerns about being pushed into work and not being able to cope. A job with lots of verbal communication is not going to be very feasible. However in a role with less need for verbal communication there are ways round  this if an employer is understanding.  Hearing loss is quite common and a lot of people either have it themselves or know someone with it and are sympathetic. Generally I’ve found that you only need a couple of colleagues (and hopefully a boss) who are understanding to make work doable.  It is a case of trying a role, seeing if adjustments can be made to make it work and if it doesn’t to try something else.

     If you are not working at the moment you need to look at applying for Universal Credit and having a work capability assessment. If you can’t “understand a simple message due to sensory impairment”  under the Communication activity then you may be awarded LCWRA which exempts you from needing to look for work.  

    Whilst waiting for the assessment you need to make it clear to the job coach that there are only limited roles you can do. Almost all roles which deal with the general public (retail, care, hospitality etc) or using the phone a lot are probably not going to work for you. Also working in places where you need to hear properly to be safe  - around machinery or vehicles for example - or be able to hear in noisy environments or at a distance will be difficult. You will  need to be firm and not allow yourself to be bullied into unrealistic job searches. Explain that you are not going to last long in a role where you keep getting it wrong because you mishear what is being said.  Hopefully the job coach will understand these limitations and only expect you to apply for jobs that you can manage or even switch off any job search commitments until the work capability assessment is done.  I think you need to provide sick notes to the job centre but it should be fairly easy to get your GP to provide a long term sick note to cover this period.

     If you are in employment your employer is required to make reasonable adjustments to allow for your hearing loss.  Obviously it is dependent on what work you do, but admin roles can be adapted so you communicate by email rather than phone or have support with phone calls   or  you do bits of your colleague’s role and they do the bits of your role that you would find difficult.  There are Access to Work grants which help pay for equipment and support for you to do your role.

     Do you have any follow up hospital appointments? You said that you aren’t eligible for a CI and a hearing aid won’t help but is this something an audiologist or ENT doctor has told you or something you have read yourself? If the hearing loss only happened in the past few weeks which seems a very short period of time for both those options to have been discounted.

    Please be kind to yourself. You have had a horrible shock and it is understandable that you will need some time to come to terms with it.  Children are better at dealing with things that we sometimes give them credit for and you are doing the best for them that you can at the moment.

Brightness

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

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.