Housing: Hi there,iv was diagnosed with lupus SLE... - LUPUS UK

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ramada profile image
31 Replies

Hi there,iv was diagnosed with lupus SLE last yr November and I'm 8months pregnant. Need advise on housing! I'm live on live in a council flat 2bed room on the second floor with no lift.This is my 5th baby and first time with lupus and my mobility has worsen. Not only its a physically stressful even mentally I'm finding climbing stairs difficult. I asked my gp to provide me with a letter but he adviced me that the council can contract him if needed.

Iv actually made an application under medical grounds and got rejected. I was wondering has anyone else been in my situation and any advise.Thanks in advance

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ramada profile image
ramada
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31 Replies
sleek profile image
sleek

Your GP can write a letter to the council on your behalf as your situation us affecting you both mentally and physically, also get a letter of support from your consultant, and a social worker if you have one. It all adds weight been down this road myself in the past. Good luck

ramada profile image
ramada in reply tosleek

Hi Sleek,thanks for your advice. Its great to get advice from someone who's being in this situation.. Do you think I should go to the local citizens advise centre?

Mandiejj profile image
Mandiejj

I would DEFINATELY appeal, with 4 children already you must be able to get a move on overcrowding can you not?

ramada profile image
ramada in reply toMandiejj

Hi Mandiejj,I live in Tower Hamlets and its already a overcrowded borough,its quite hard getting a bigger place under overcrowding basis.what annoys me most is my gp wouldn't provide me a with supporting letter and the people from the council are unreasonable,harsh and judgmental. When I spoke to the lady from the housing asking why my application got refused she told me how like my medical condition is not such bad as a person with cancer and my mental health is not suicidal.

kittykat68 profile image
kittykat68 in reply toramada

Do u know if ur gp s has an occupational therapist, they helped me so much, rules and regs and citizens charters have changed over the last 2 years due to cuts in budgets,there is a housing issues page on Facebook and they have advocates thst act.on ur behalf try it you never know hipe thats helpedx

ramada profile image
ramada in reply tokittykat68

Hi kittykat68,thanks will look into it.xx

Mandiejj profile image
Mandiejj

Ramada

I think dr letters are charged, I don't see a problem them doing you a letter if your paying for it, just stating your health issues and how you need assessed for low level housing to aid with the strenuous walking the stairs xx

Hope you get it sorted. I. Sure if you informed your MP and showed them your living conditions they would have something to say and help you be rehoused.

Can you not go private rent for larger accomodation?

ramada profile image
ramada in reply toMandiejj

Hi Mandiejj, thanks for getting back! I'm so stressted.I only have 5 weeks till baby due.. I think I'll have to ask the gp for a letter even if it means to pay! I was thinking about getting my local councillor involved as this matter has gone to appeal stage.

I actually haven't thought about privately renting but it will have to be my last resort.thanks again for your advice,much appreciated. Xx

Mandiejj profile image
Mandiejj

Ramada

I hope your able to find resolve before baby is born. This is stressful enough with your illness and pregnancy without the added stress of housing issues. Xx

ramada profile image
ramada in reply toMandiejj

Really appreciate your advice and reassurance. Xx

MargaretGail profile image
MargaretGail

Hi Ramada, I don't have any experience outside of SLE but I would definitely go to Citizens Advice. Good luck :)

ramada profile image
ramada in reply toMargaretGail

Thanks Margaret Gail,its the last thing i needed! so frustrating! Just as I wanted to enjoy last few weeks before due date to relax and especially with lupus SLE my whole body is in pain.my consultant wanted to put me on steroids but I decided not to..

Citizen advice centres can be very busy but I guess I will have to take time out and I only have 14 days to appeal.. Thanks again for your advice.xx

santos2 profile image
santos2

Good morning Ramanda.

Why don't you go to Citizen Advice Bureau. They know the Law to access support services. They can advice you on best roots to take. They are many law law.good luck.

Maria

ramada profile image
ramada

Thanks Maria,your right! They can advice me the best but there's always a long que. I will defiantly get my husband go to the citizens advise centre.thanks a lot xx

windless22 profile image
windless22

Social services can do self referral get assessed on suitably of property report given to housing.you shouldn't been refused.

Hospital letters diagnosis helps.

Citizen advice.

Sad hear way council been,also you could do a homeswap using a homeswap site we did where find place suited fill in form via housing officer.they inspect both properties and once approved can move...anytime I can support due my arthritis my spouse legs feet problem we only allowed ground floor.

Certainly not without lift neither should you have to.

Take care congratulations on pregnancy.

ramada profile image
ramada in reply towindless22

Thanks for your reassurance windless22,I provided all my hospital letters and details of my consultant and other professional but the sad thing is they didn't give contact anyone instead they said that I'm on low dose on meds and not on steriods but the reason I'm on low dose is because of my pregnancy.my family support worker provided me with a supporting letter but they argue saying she's not medical professional.

Thanks for your support. Xx

windless22 profile image
windless22 in reply toramada

Sorry hear,citizen advice good idea.

Hope turns out in your best interests. You could try do social housing swap. Using home exchange sites to find suitable property who wants yours.

I did that to get bigger rooms smaller garden as couldn't cope such large garden.

Private message if want name site.

ramada profile image
ramada in reply towindless22

Hi thanks for your reply.

My local housing let me down on bidding properties under medical grounds so I will be thinking of mutual exchange.

kezzie profile image
kezzie

OMG RamDa, This is the state of london councils today. I am with Barnet and my private landord has just upped the rent £500 pcm. So now we have put our hands in the mercy of the council who will be as off putting as they possibly can. Do not give up, whatsoever. They said they will only house when the landlord evicts us!!! Since this has happened i have been to AE, the rheumatology nurse and now have a rushed through appointment with my rheumatologist this week as my legs just won't work and feeling on fire. What advice i can give you is just put your mind on having your baby first as thats round the corner and you have got a roof over your head. But then get into action (whivh i know will be hard with a newborn but needs must) dont forget you will be having daily health visitor who you have to get on side and explain the whole situation were hopefully she can then refer you to a social worker and will see your living conditions first hand. Your medication will be upped as you are no longer pregnant and hormones after pregnancy will play havoc with your SLE. How will you get a pushchair down the stairs with swollen ankles,legs and feet? You will become housebound something the council has got to consider. I have rang Shelter, CAB, Housing advice centres in my area, housing associations (who will only help when referred by your council but still fighting to get on the waiting list! ). Law centre mean they will give you advice for free is there any in your area? Also solictors in your area that do legal aid? Build up a portfolio of all the complications,keep every doctors letter from the hospital, photocopy prescriptions write a diary of how you feel each day, if your entitled to DLA or PIP apply now as you will have more rights with your council if you do. Write to your MP by law they have to write back to every letter they recieve. Your GP might be overworked but you are a sick person so he can right a letter even if privately make he actually read up on Lupus in case he doesn't know what it actually entails (they often have a vague idea if they have never come across it ). Thinking of you 😊 as I'm in similar boat dont even know where we will be next month i have 4 kids,3 at home as the eldest is 23 but youngest is 12. We have to fight though or what will happen to us? Like Russel Brand says its like Social Cleansing but we didn't ask to get ill so I would think that in 21st century England they might care more for their sick,ill,disabled and vulnerable people living in the city instead of hiding us away from sight. Sorry went on there but it has been the most stressful experience i have had to deal with worrying my kids wont have a home. But the one good thing Ramada is you will have a beautiful baby soon and that makes everything worth it. Kezzie 😄

ramada profile image
ramada in reply tokezzie

Ahh bless you kezzie,you've put a smile on my face.you've covered all my worries I'm going through now.I feel like I'm on a rollercoaster ride,feeling emotional weak and getting annoyed at my poor husband for every lil thing going wrong.my husband will be going to citizen advice centre on Wednesday and I'm trying to get letters from all my professionals.its effecting me so badly that I wish at times I have a still birth and I won't have to worry about how I'm going to manage with the baby.I'm getting my OT to come and do a mobility assessment tomorrow and waiting to hear from physio.

Thanks again for your reassurance and I wish you good.xx

kezzie profile image
kezzie in reply toramada

Well ramada, I'm thinking of you and wish you all the best and Good Luck tomorrow :)

ramada profile image
ramada in reply tokezzie

Kezzie,I'll be thinking of you too,sometimes I feel I wished I hadn't even thought about rehousing but the fact that i live in a flat with no lifts really isolates me and puts stress physically and mentally.

Kezzie I pray you get to resolve your housing issues and try not to stress..xx

Kjmarsh profile image
Kjmarsh

Please go to local CAB, they can help with housing applications. Contact 'Shelter' they give advice on all types of housing issues

ramada profile image
ramada in reply toKjmarsh

Thanks Kjmarsh,will defiantly go..just finding everything abit to overwhelming.. Xx

Kjmarsh profile image
Kjmarsh in reply toramada

I've had Lupus for 10 years and volunteer at CAB (17years) if it were me, I'd try and take all problems off your shoulders, so hope you find the right help. Good Luck

sleek profile image
sleek

cab is a good idea as can advise on housing issues, and associates personal issues and sign post. Get the name of your local M .P too should you need

To have their support.x

sleek profile image
sleek

Can understand you feel overwhelmed, keep notes, go through issues one at a time. The more support you have the easier it will feel for you. Try not to stress to much as that is s big trigger for us lupies x

ramada profile image
ramada

Thanks sleek,thanks for reassuring me xx

windless22 profile image
windless22

Your welcome, that's ridiculous refusing on medical grounds.good luck at cab.

Take care glad your being assessed at home to.

If your in council flat they often don't allow swap mutual exchange if flat gets adapted.

In your case different as need be ground floor.

ramada profile image
ramada in reply towindless22

Thanks but unfortunately I got refused and I appealed and got refused again.

windless22 profile image
windless22

Hi your welcome, that's poor must be so stressful for you.hope something changes.

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