Housing and independent living
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Council housing and partner

loopylou22loopylou22 Member Posts: 12 Listener
Hi everyone. 

I have been awarded a Band A for council housing due to 'urgent medical need'.

If I were to be reassessed because I'm thinking of moving in with my partner, is there a chance I could be awarded a lower, less priority band because he is a teacher so is on a decent salary? He has a Daughter so we would need an extra bedroom.

I haven't 100% decided if this is what I'd like to do yet, I'm just weighing up the pros and cons. I've lived alone with my children for 9 years now and I've got a good routine with my carers so I'm happy for it to stay that way if it means I won't be waiting longer to move. 

Many thanks 

Replies

  • janer1967janer1967 Member Posts: 9,276 Disability Gamechanger
    Hi there 

    Sorry I'm a bit confused as you say about moving in with your partner so why the need to be on housing list ? 

    It may affect your banding if you are looking as a couple as his earning could mean you could afford private rent and having someone living with you may make the medical need for housing less urgent 

    But this is just my thought I'm no expert 

    Maybe contact cab they might be able to advise 

    There is also the financial side to consider with him working in a decent paid job 
  • MarkN88MarkN88 Member Posts: 825 Pioneering
    Another thing to do as well would be to look at the allocations policy it might be listed in there how they assess applications. 
  • loopylou22loopylou22 Member Posts: 12 Listener
    Hi 😊

    I'm on the housing list because my house isn't suitable now that I'm severely disabled and mostly bedbound, plus my neighbour is extremely abusive. I'm unable to leave the house and escape when they are outside threatening me, telling police officers they are going to kill me etc. I have CPTSD so it causes awful panic attacks and is a living hell. 

    Yeah, that's what I was thinking and it's much more important I move as soon as possible than move in with my partner. I'm happy living alone and I worry I will feel like a burden if we lived together, so I am more comfortable with having my care provided by my carers. I have a history of severe domestic violence so living with someone again does fill me with fear. There would be some plus sides but I don't want to put myself in a position where I might regret it. Hence why I'm having trouble weighing up pros and cons. 

    I need my next house to be fully disability adapted, wheelchair access, wet room, space to be able to use my powerchair indoors and my bedroom must be downstairs. 

    Hope this explains my situation better 😊 I apologise if it hasn't but I'm having a bit of trouble with brain fog at the moment. 

  • janer1967janer1967 Member Posts: 9,276 Disability Gamechanger
    No problem it makes sense 

    Personally I would get the move and then consider living together after 

    I know if he lives with you   you will need extra bedroom for his daughter , does she live with him or will it just be staying over odd night 

    Either way I would think if your needs first then see where he could slot in if you decide to live together 
  • loopylou22loopylou22 Member Posts: 12 Listener
    Thank you Janer1967

    I feel less selfish now you've said that 😊 because I do feel my needs should come first in this situation.

    He has 50% custody so I don't see him for a week, every other week, which means we do really miss eachother.

    I have 3 older boys so she would definitely need her own room. It might be a case of waiting to see where we are in our relationship when my eldest goes to America for his basketball scholarship. Even if they just stay a few days during the time he has her and see how we work as a family then go from there. 😊
  • loopylou22loopylou22 Member Posts: 12 Listener
    Just to add... 

    If we try it the way I've just mentioned, it means we can easily go back to how our arrangements are now and I won't have the added pressure of worrying about him finding a new home or feeling guilty because I couldn't cope with my anxiety about living together. 
  • janer1967janer1967 Member Posts: 9,276 Disability Gamechanger
    Personally that's what I would do 

    Get your own place then you can try out living together on weeks he doesn't have his daughter first 

    It's hard to go back to living with someone after so long you get used to your own space and routine 

    As you say I wouldn't want the pressure in case it didn't work 
  • loopylou22loopylou22 Member Posts: 12 Listener
    Thanks so much Janer1967

    I feel confident I'm making the right choice now. Thank you for your help 😊

    Yep, the pressure would most likely make my anxiety worse so could be setting us up to fail. It sure is hard after being used to your own space and routine. Also, I often have insomnia so I like being able to do what I want without having to consider the needs of someone who is sleeping next to me. 🤭😂
  • janer1967janer1967 Member Posts: 9,276 Disability Gamechanger
    You sound just like me lol 

    I've been separated 4 years met someone else who used to stay over for weekends but I couldn't wait for him to leave each weekend get my own space back and couldn't ever sleep when he was here 

    I like to get up and have cuppa if I can't sleep and watch TV 

    Anyway good luck getting suitable housing let us know how it goes 
  • loopylou22loopylou22 Member Posts: 12 Listener
    🤭 yep, I can understand the waiting for him to leave. 

    Yes, exactly, turning the light on, sticking the TV on etc. I catch up with most of my medical emails/letters etc at 3am because I tend to have less brain fog so I'm more productive and hate wasting the opportunity to actually get things done.

    Thank you 😊 I will do. My housing needs assessment is complete now so it's just a case of bidding on the next perfect house 😊
  • chiariedschiarieds Community Co-Production Group Posts: 8,063 Disability Gamechanger
    Hi @loopylou22 - welcome to the community & thank you for joining. it looks like having a chat has helped you make up your mind, so I wish you well in getting a suitable house. Please kindly let us know how you get on, thank you. :)
  • 22Putney22Putney Member Posts: 27 Connected
    Thank you for your message, I am just finding my way round, it will take time.
  • loopylou22loopylou22 Member Posts: 12 Listener
    Hi @chiarieds

    Thank you for your message 😊 and thanks for letting me join the community. 

    I assume you have chiari and EDS? So do I! Among a long list of other things. 
  • Caz_ScopeCaz_Scope Posts: 578

    Scope community team

    Hello @loopylou22 :)

    I just wanted to stop by and welcome you to the community. It's good to have you with us.

    I can see that you've already been busy getting to know some our other members. From what you say, it looks like some of the discussions you been having have helped you to think through some of the questions and concerns you've been having about your current living circumstances? That's good to see. 

    Really, I just wanted to get in touch with you to follow up on some of the things you've said about the harassment from your neighbours and the stress that's been causing you. I'm so sorry to hear that's the case. I can appreciate that must be particularly distressing for you given what you've experienced in the past. 

    I know that you've been in touch with the police about the harassment. I hope you're receiving any other additional support you might need with that, and also with your CPTSD? Just to say that we're here if you need any help with anything. Whether that be in terms of reporting some of these issues, or assisting with a referral to get you some extra support. Please do let us know how we can support you. 

    As I say, really good to have you with us. You take care and I hope to speak to you again soon. 

    p.s. How fantastic for your son! A basketball scholarship. That's brilliant. You'll have to keep us updated on how he's getting on with that. :)
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  • Caz_ScopeCaz_Scope Posts: 578

    Scope community team

    Just as a bit of an after-thought @loopylou22, it might be an idea if I pop this post over to the Housing and independent living section of the community. That might be a bit more helpful given the nature of your original post about council tax.

    But, if you want, please do feel free to pop another post into the Welcome and introductions section, just to tell us a bit more about yourself.

    Hope that makes sense. Any questions, just give us a shout. :)
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  • loopylou22loopylou22 Member Posts: 12 Listener
    Ooops. My apologies Caz. I didn't realise I had made that mistake. Sorry.
  • Caz_ScopeCaz_Scope Posts: 578

    Scope community team

    edited May 2
    No, no! Please don't apologise @loopylou22

    I just thought it might be a better 'home' for your post if you wanted to carry on the conversation. :)

    How are you doing anyway?

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  • chiariedschiarieds Community Co-Production Group Posts: 8,063 Disability Gamechanger
    Hi @loopylou22 -  it's very nice to 'meet' someone who has both Chiari 1 Malformation & EDS :) we have several members with EDS; have only seen 2 or 3 in nearly 2 years with Chiari, but nobody with both until yourself! My username was a bit of a giveaway. :)
  • loopylou22loopylou22 Member Posts: 12 Listener
    Hi @Caz_Scope

    I missed your first message. Thank you ever so much for the warm welcome 🥰

    The history with my neighbour has been pretty shocking to be honest, she's extremely good at playing the victim so there has been more than one instance where the police have believed it's a 'tit for tat' situation. The most recent event, she verbally attacked my friends for parking in one of the visitors bays that she claims to own. It was all recorded on cctv but the police want me to take her to court 😑 I'm far too unwell to deal with that level of stress and going by previous experiences, it will only make the situation 10× worse. I just need to get out of here. I was receiving support from victim support but most of my life is about pain management and chasing/dealing with medical stuff so it became it bit too overwhelming committing to another appointment. 

    I'm in counselling but I will be having trauma therapy with a private specialist to help me deal with the CPTSD. There's a few things that we're waiting for before it can go ahead though. 

    Thank you so much for the offer of support 🥰 I really appreciate it! 

    Yep! I'm unbelievably proud of my Son! He's had at least 8 offers for scholarships! A few in Canada and the rest in America. His coach says he's on track to be a pro basketball player 😊 I'll definitely keep you updated because it's one of the most positive things that's happening in my life. 

    Again, thank you so much for welcoming me here. I'm excited to get to know everyone 💜
  • loopylou22loopylou22 Member Posts: 12 Listener
    Hi @chiarieds

    It's nice to meet you too 😊

    I hope you don't mind me asking but do you have other comorbitities with your EDS and chiari? 

    I was recently diagnosed with cranial instability, atlantoaxial instability and cervical kyphosis. I also have intracranial hypertension and a csf leak. 

    I'm going to need spinal fusion and decompression surgery. Xxx
  • chiariedschiarieds Community Co-Production Group Posts: 8,063 Disability Gamechanger
    Hi @loopylou22 - the only comorbidity I have is orthostatic/postural hypotension, but I'm wondering about Mast cell activation disorder as I suffer with allergies (both more to do with EDS, tho my worst problem is neuropathic pain the moment I'm upright).
    Do you know when you're going to have surgery? Please keep in touch & let us all know how you get on.
  • loopylou22loopylou22 Member Posts: 12 Listener
    Hi @chiarieds

    That's interesting, my Neurosurgeon wants me to be checked for MCAS too. I'm not sure how we go about getting a diagnosis though 🤔

    Neuropathic pain is horrendous so I really feel for you. 

    I've no idea at the moment, there isn't a single neurosurgeon in the UK that is qualified to perform the surgery so I'm having to go to Barcelona, which means I'll have to pay for it. We're still trying to decide what to do to raise the money. I think it's becoming more of an emergency as my eyesight has already been damaged by the intracranial hypertension and now my oxygen levels keep dropping really low, I think it's due to the compression on my brainstem 😑

    My friends and family want me to go to hospital but my local a&e never know what to do with me so they end up making so much worse for nothing. Xxx
  • chiariedschiarieds Community Co-Production Group Posts: 8,063 Disability Gamechanger
    Hi @loopylou22 - I did wonder where you might have surgery. I've given up seeing 'specialists' in this country as I was educating them. I have heard people mention Barcelona, tho I would probably head to New York. I've been in touch with a neurosurgeon there (since 2000) who has developed a minimally invasive technique, which would certainly benefit those of us with EDS. You can see Dr. B's presentation on this here: https://www.chiarinsc.com/video-asapconferences.php    if you scroll down to 'Minimally Invasive Techniques in CM1 Surgery.'
    Dr. B also lectured on 'Craniocervical instability' in last years virtual American Syringomyelia & Chiari Alliance Project conference (which I attended). See: https://asap.org/conferences/virtual-conference/2020-conference-videos/
    He was the first Dr to notice some of his Chiari patients also had EDS, & helped me raise awareness of this association of CM1 and EDS here in the UK.
    I had wondered if the Walton Centre might be OK as they have clinics for Complex Chiari (we fit into this category), & Mr. B (2nd named neurosurgeon) mentioned in the following link might be worth seeing. Please see: https://www.thewaltoncentre.nhs.uk/80/chiari-malformation-and-syringomyelia.html
    There's a lecture on Mast Cell Dysfunction in the 2020 conference too (a few below Dr. B's) which you may like to watch.
    Do you have any info on Barcelona Drs? I would be really interested to hear.
  • loopylou22loopylou22 Member Posts: 12 Listener
    Hi @chiarieds

    Thank you so much for all of the links. 😊 I have heard of Dr Bolognese and I was considering having a consultation with him. 

    I've already seen a neurosurgeon at the Walton Centre, they said I may need spinal fusion and sent me on my way. They gave me a name of a Dr to be referred to but after researching, I found that Dr Gilete in Barcelona was the closest person that could help me. 

    https://drgilete.com/cci-eds/

    I'm still learning about my conditions so I'm interested to check out the links you've included in your comment. Thanks again 😊



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