Unsociable Hours, is this forbidden — Scope | Disability forum
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Unsociable Hours, is this forbidden

ToodlePip Community member Posts: 4 Listener
Hi everyone,

I’ve had a carer for 18 months now, receiving carers Allowance. My health is very complicated so it’s not understood by the council who have housed me. I guess I’m seen as a problem due to what I’ve ended up with in terms of where I live.

I will list my health problems so you get an understanding as to why my carer often has to work throughout the night, this person has no private resting room to sleep in. 

Here goes 

Crohns & Colitis 
3 ft Small bowel removed
short bowel syndrome causing me to lose 3000mls of water like output
Psoriasis Arthritis, joints swollen and unable to walk more than 20 meters
3 Laminectomies (spinal fusion)
3 Discectomies (disc removal)
Stenosis of the spine as well as degenerative spine
Total numb left Foot including drop foot
Difficulty in absorbing nutrients
Frequent bowel blockages requiring carer to undertake certain duties

I completed a form from the council requesting an extra bedroom, I gave a detailed reasons as to why my illness is causing my carer to stay  overnight. My pouch requires emptying every 3 hours. Bedsheets soiled and needing washing, I’m unable to walk on my own to the bathroom, meals must be done for me, I’m bed ridden due to pain caused by my arthritis. Psoriasis has made it impossible for my pouches to stay on. This causes lots of distress as my carer cannot leave me on my own mopping up waste matter with dressings etc. knowing a carer is in the next room at night comforts me, dealing with panic attacks brought on by my situation my carer is the only person to prevent me from hurting myself.
I’ve had terrible episodes of mental health. At 47 and knowing how I once functioned has bought me some emotional distress. 

My carer receives carers allowance £67.60 plus universal credit that is an absolute insult. My carer relies on friends to stay there. a permanent place isn’t an option. My carer is with me 80% of the time, sleeping on a two seater sofa isn’t very acceptable given what they do for me. I’m very lucky to have someone give up so much for me Ive no friends nor family to ask for help 

I receive Enhanced rate Mobility PIP
Standard Daily living PIP
Housing benefit for my 1 bedroom flat
Contributions ESA Group

Due to not receiving DLA I was unable to submit my application. The form had 4 lines to explain illnesses, reason why I required an extra bedroom.

I have been in my run down un maintained flat for 6 months. The standard of decoration and repairs required is an absolute disgrace

what can I have in terms of an extra bedroom, what I need to pay extra for it etc

Thank you 



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

    I would get yourself referred for a care needs and housing needs assessment through the gov website as a start 

    Or will cone and assess your needs and give recommendations and sign post them to relevant people eg housing   social services 
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    edited June 2021
    Hello @ToodlePip and a warm welcome to our online community.  How are you getting on?

    I'm sorry your housing situation isn't adequate for your health needs and accommodating your carer too  :(  You say you didn't submit your application for an extra bedroom because you weren't in receipt of DLA, however my understanding is that as you are in receipt of standard daily living PIP you would be eligible to apply.  

    Taken from the Shelter webpage on 'Restrictions on eligible rents for social rented sector tenants':

    The bedroom must be 'reasonably required' by a non-resident carer (or team of carers) who 'regularly' stays (or stay) overnight.[18] Whether a bedroom is 'regularly' used needs to be assessed over a long period, and it is not necessary that a carer stays overnight on the majority of nights.[19]

    In order to qualify for an additional bedroom for a non-resident overnight carer:[20]
    the claimant, their partner, or non-dependant adult must be in receipt of higher rate attendance allowance, the care component of disability living allowance (DLA) at the highest or middle rate, the daily living component of personal independence payment, or the armed forces independence payment
    Nevertheless, this isn't my specialist area and I'd highly recommend speaking with the team at Shelter to be certain and clarify what next steps to pursue.  Here's a link to Shelter's contact details.

    Likewise, here's a government link to apply for a Social Care Needs Assessment and I wonder whether it would be worth your carer asking for a carers assessment to see whether they would be eligible for any further support.  

    Please let us know how you get on and sending you all the best.  Take care.
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