Hi, my name is Annejo74!I desperately need to move closer to my son and daughter — Scope | Disability forum
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Hi, my name is Annejo74!I desperately need to move closer to my son and daughter

Annejo74
Annejo74 Member Posts: 3 Listener
hi I’m 46 I have a lung and heart condition and need lots off help with daily tasks I currently live 50 miles away from my son and daughter and desperately need to move near to them 
I’m in a private rent 
I don’t no what to do 
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Comments

  • janer1967
    janer1967 Member Posts: 12,274 Disability Gamechanger
    Hi and welcome to the community 

    If you want to stay in private rent it's a case of looking in the area you want do online searches 

    If you are wanting social housing there will no doubt be a long wait 

    It may help to refer yourself for a care needs assessment via gov website then a ot will come and assess and write a report 

    Based on the outcome the report can sometimes put you in a higher priority banding 
    Here to help with my experience in hunan resources and employment rights 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser Posts: 312 Pioneering
    Hi @Annejo74

    Welcome to Scope's forum. It is great to see that you have joined us. Sorry to hear that you are experiencing a tough time. I am assuming from your post that you are unfortunately mainly struggling with managing daily tasks due to your lung and heart condition. I am just wondering if you have made contact with your local council yet? They could arrange a needs assessment to see what support you require. Following this needs assessment, they could provide support with daily tasks to enable you to live in your home if this is what you would prefer. Otherwise, it would be about either your family moving closer to you or seeing what accommodation would be available closer to your family. If you have any follow-up questions or if we can support you in any other way, please do not hesitate to let us know  :)
    I have expertise in the following subjects, gained through professional settings such as high level education or employment: autism spectrum disorder, dyslexia, down's syndrome, social, emotional and mental health difficulties, assistive technology and education. Pronouns: She/her.
  • Annejo74
    Annejo74 Member Posts: 3 Listener
    thanks 
    I will get in touch with the council for an assessment 
    it’s so hard I have no idea what I’m doing I tend to just hide away and hope it will get better 
    I am also waiting to be assessed for a lung transplant so I’ve got so much to think about 
  • Teddybear12
    Teddybear12 Member Posts: 765 Pioneering
    edited September 16
    Hi @Annejo74 Have you actually been referred for assessment for a Lung Transplant ? Unfortunately due to the pandemic when no transplants were done there is a long waiting list. My daughter had a double lung transplant several years ago and even then she was on the waiting list for transplant 2 years three months. My daughter had IPAH. I hope the council are able to help you as I assume it is your breathing that is the problem. No one understands how hard it is to do anything when you cannot breath. It is a big decision to have a transplant.  Good luck.
  • Annejo74
    Annejo74 Member Posts: 3 Listener
    Hi Teddybear12 
    im sorry to hear about your daughter 
    I have pulmonary hypertension secondary to lupus I was listed for transplant in 2018 I had 1 call but wasn’t suitable 
    I came off the list at the beginning off the pandemic and am still waiting to go in for another 3 day assessment 
    it’s a living nightmare sometimes I don’t think I can carry on your 💯 right struggling to breath all the time is so scary 
    I just want to be close to family and all the government do is make you feel like your doing something wrong like I’m trying to swindle them 
    sorry to off load on you but sounds like you understand 

  • Teddybear12
    Teddybear12 Member Posts: 765 Pioneering
    edited September 18
    Hi @Annejo74 You can off load on me anytime you need to I do understand. I did everything for my daughter as by the time she had had a shower and got dressed with my help she had to have a sleep as she was worn out. Obviously stairs and slopes were a nightmare as need extra effort which affected her breathing. In fact as I am sure you know everything affects your breathing even eating. I gave up work to look after her but you   have to fight for everything. She was on 24/7 infusion which we made up each day she had a Hickman Line in her neck. You are stronger than you think and have to keep going. She was also on oxygen. But we still went out we used a wheelchair not because she could not walk but because she could not breath and walk. I badgered the Council and after five months we did get a stair lift which helped her. It must be really hard for you to do all the chasing with the council I did it for my daughter. My daughter was 24 when she became ill and had her transplant when she was 28 as medication did help at first. But there again we had to get funding for every new drug she needed. The CCG in my area were very good with that as her drug bill before transplant was £100,000 a year. If you moved 50 miles would you still be under the same transplant hospital? Could your family perhaps move nearer to you a big ask I know?  I am here if you need to ask anything or if I can help in any way even if you just want a moan. I am a good listener. Good luck and keep badgering the council or get you children to help with this. 
  • Tori_Scope
    Tori_Scope Posts: 5,996

    Scope community team

    Hi @Annejo74 :) Welcome to the community! 

    Are you confident in knowing how to contact your local council about the needs assessment? 
    it’s a living nightmare sometimes I don’t think I can carry on
    It does sound as though you've got a lot on your plate at the moment, and hopefully things will start to improve once you've managed to get your housing situation sorted. However, it's important that you look after your mental health too. Have you spoken to anyone about the way you've been feeling, such as your GP? 

    Also, as @Teddybear12 has said, you're more than welcome to get things off of your chest here any time you need. 
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