Advice please — Scope | Disability forum
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Advice please

Terri_1986 Community member Posts: 5 Listener


I have autism and my husband now has medical conditions (Emphysema, COPD, Epilepsy and he has had strokes in the past). We live in a town without any support or friends, due to this we are by ourselves. I am finding it increasingly difficult to look after my husband due to him collapsing, I work full time (that is a struggle in itself) and my work is not sympathetic to me going home early when my husband collapses. I find it difficult to make calls as I can’t recognise tones of voices and I struggle to get words out, if my husband needs an ambulance etc.

My family have said they will help me with looking after him as his health declines. We decided to go on the council housing list because we can not afford to rent somewhere where they live. I get minimum wage. My mental health is getting worse, so are my meltdowns and I am finding it hard to ‘mask’ my autistic traits and I am struggling to communicate to people.

We got on the housing list but on a low band, I thought they did my medical assessment as well but I have found out they did not do this. So I have now requested that they do this. The doctors know about my past mental health problems (I saw psychiatrists and eventually got diagnosed with autism). I have not spoken to the doctors about my mental health in recent years and I know I should. My family are my support network, my husband has been but due to his health this is not possible anymore. 

The council wants to write to the doctors about my medical needs, but I don’t know how the doctors can help? Unless they will go through my past mental health in the past (6 years ago)?



  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi there 

    Normally when requesting medical info they will ask specific questions and under amra (authority to access medical records ) first you need to give permission and also you can ask yo see the questions they will ask and also see copy of gp response prior to it being sent 

    Do either of you claim PIP? Have you considered getting some care sorted for your husband while you are working ? 
  • Terri_1986
    Terri_1986 Community member Posts: 5 Listener
    Thank you for your reply. I didn't know i could request it, but that is something I will be doing. I am just scared that something will happen to my husband and I have no support and no one around me to help.

    No, I have applied for PIP when my DLA ran out but I was turned down and it was very awkward and abit traumatic but I am wanting to apply again. We have considered it and asked the doctor but until my husband reaches stage 4 it will have to be self funded and we can not afford that. 
  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Can your husband also claim for PIP 
  • Terri_1986
    Terri_1986 Community member Posts: 5 Listener
    edited February 2021
    No, as he is state pension age and he doesnt want to get attendance allowance as he thinks there is nothing wrong with him. We have applied before but he got rejected so I think this is why he doesnt want to do it again.
  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Ok just trying to think of ways so you can finance some care for him 

    Try calling welfare rights see if they have any advice or CAB 
  • Terri_1986
    Terri_1986 Community member Posts: 5 Listener
    Yes, thank you I will do
  • newborn
    newborn Community member Posts: 830 Pioneering
    You do need advice, don;t you?   Do you get housing benefit ?  You mention your family live in an area where rents are high, but housing benefit varies from one area to another, even within the same borough, and they have online systems where you put a  postcode in,  so you could check.  Will you be able to carry on your existing job if you move?   
    Your employer must not be completely unsympathetic and unwilling to adjust to your needs as a disabled person.   Anybody would be under strain with an increasingly sick husband, but your autism is a medical condition making it even harder for you.
    You are lucky to have a supportive family.  The sooner you can get near them the better.  There is a Scope adviser and there is Shelter, but I suspect waiting to come top of the council list, in some areas, would take a few lifetimes.  I don't know what social workers do, but have heard of the right to a care needs assessment, which you both have, by the sound of it.   
    Maybe a social worker saying to her boss that the council will finish up having to pay for your husband to go into a care home and you breaking down and needing care too, if they don't move you close to your family, and really fast,  would frighten them into pushing you further up the waiting list ?!   Maybe, you could get him, and even you, because of your melt down risk,  assessed as needing council funded carers right now, and all because you aren't near enough to your family?.  As I say, I don't know what they do or what they have to take into account, but you could get  advice about that.
    Oh, I just remembered that some council accommodation is reserved for older people, so in some cases, your retired husband (and you as his wife) would be able to bid for property barred to others on the list.

    If it doesn;t work, then stay on the list by all means, and keep on trying to get a higher band by all means, but in the meantime, you probably do need to try plan B, and work out a way to rent privately near your family. It is useful that you have your job, and your husband his reliable income as a pensioner, so a private landlord would not necessarily turn you down.
    It is easy to understand how discouraged your husband was, being turned down.  But it doesn;t mean he has "nothing wrong" with him, as he claims (!)  especially now he is so much worse.  I don;t know about benefits in pension age, but again, there is advice in Scope and elsewhere.  Not just the usual c.a.b and benefits people, but now, he should also be able to get help from age related organisations too.  There might be  some kind of disability premium he could get for his pension, that would help.   Also, I have heard of couples where both are officially recognised as carers for the other one, and that has some financial benefit involved.

    It sounds as if you have been battling on so hard with uphill struggles. Hats off to you, and wishing you all the very best of luck..
  • Terri_1986
    Terri_1986 Community member Posts: 5 Listener
    Hi, I thought I would update we got awarded high priority medical need so Band 2, very happy with this. Thank you everyone for your advice. 
  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,462 Disability Gamechanger
    What a relief @Terri_1986 :) Thanks for letting us know. 
    National Campaigns Officer, she/her

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