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Time to have my leg amputated, worried about the future.

gazz46gazz46 Member Posts: 9 Listener
edited February 2020 in Disabled people
i am 48 yrs old and in the process now of deciding with my consultant if it is time to have my leg amputated as i have blocked artery behind knee and no other option is now available, with blood that is very hard to thin sufficiently.
I have no idea of the benefits available to me, as i still just about manage to do part time hours as i have to somehow pay the rent in my private rent room in top floor of shared house.
Are the council duty bound to find me alternative housing or put me in a home ? as i obviously wont be able to drive or climb the stairs to my current room.
Is there anywhere you can go to arrange benefits ? as i wont be able to work.

To be honest i am just pulling my hair out, i have no idea where to start, i have no relatives, i am a total loner.
I do not want all this to just end landing in my lap with nothing in place.
i live in Colchester Essex by the way



  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI and welcome,

    I'm sorry to hear this. If this does go ahead then because you're working then the first thing to look at will be SSP from your employer, which is paid for 28 weeks with a fit note from your GP.

    While you're claiming SSP Universal credit maybe possible depending on circumstances such as savings/capital and income. You will need a fit note from your GP to be able to claim the limited capability for work under UC. If you have savings of more than £6,000 then your UC will be reduced £4.35 for every £250 over than amount (per month) and savings of more than £16.000 and you won't be entitled to any UC because it's a means tested benefit.

    Council tax reduction isn't part of UC and needs to be claimed separately from your local council.

    If you have savings are are unable to claim a means tested benefit then New style ESA maybe possible but this will depend on your NI Contributions between April 2017 and March 2019. If you've paid enough from working then you'll be entitled to claim this, it pays £73.10 per week and a fit note and your SSP1 form will be needed from your employer. A claim can be started 3 months before your SSP ends but you won't receive payment until the SSP ends.

    The council is unlikely to automatically rehouse you but a needs assessment from your local council should be arrange before you leave hospital and if a house move is advised then they could put in recommendations with your local council based on your disability. This will give you a slightly better advantage.

    PIP, this has replaced DLA. It's not awarded based on a diagnosis. it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors. You need to have had the condition for at least 3 months and expect them to last at least a further 9 months. Evidence will be needed to support your claim and this should state how your conditions affect you against the PIP descriptors. This benefit is not payable if you're in hospital for more than 28 days.

    There's an awful lot of information here to deal with and for this reason a visit to your local advice agency for a full benefit check may also be useful when the time comes.

    Hope this does help a little. Good luck and best wishes!

    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • gazz46gazz46 Member Posts: 9 Listener
    thank you
    my major concern is that i will be discharged back to a room i am unable to access with no income at all
    i work part time, 0 hour contract so no entitlement from my employer, no capital or savings.
    So when i get the call that i have to go in and have the procedure done, what happens ? who helps ?  being alone is a scary place in times like these
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    You will not be discharged from hospital until help is put into place and for this you’ll need to speak to your Consultant who will give you more information.

    The advice regarding the benefits is as I advised above but minus the SSP. New style ESA can be claimed if you’ve paid enough NI Contributions. If not then it will be just Universal credit with a fit note from your GP to start the limited capability for work process off. If you claim New style ESA as well as UC then the weekly money will be deducted from your total UC amount. There’s no financial gain to claiming both together, other than 1 is means tested and the other isn’t. 

    PIP the advice is as above. 
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    @gazz46 Hello and welcome to the community. I had my leg amputated 2 years ago at the time I was working full time on a temp contract and my employment was ended at the end of my contract, which is when I started my claim for benefits (slightly different situation to yours). I also lived in a house with stairs and steps into the property so this was unsuitable but I was a home owner and my property was already on the market. After the op I was given support of OT and also physio, I had to return to my home as I am mother to young child and we were separated while I was in hospital. I had an assessment of my home and  also physio taught me how to get upstairs on my bum etc. I was advised that no adaptions could be made to my home and I needed to look for alternative accommodation. I did return to my house and became housebound unless someone could come and carry me out, but this was better than not being with my son. I applied for social housing and after a needs assessment I was put into the highest band for re-housing, however that did take nearly a year until I was found a suitable property and also had to sell my house in order to move.
    I put in a claim for PIP after the 3 months and was successful in my claim I got standard rate daily living and enhanced mobility, and I also claim UC. UC does not pay any housing element if you are a homeowner until after 9 months claiming so another reason why I had to sell up as I couldn't pay my mortgage.
    If there is anything you want to ask feel free to ask, Poppy is the best to advise on benefits but I can support from a practical aspect on how its like to adapt to losing your leg ?  
  • gazz46gazz46 Member Posts: 9 Listener
    hi and thank you
    Having no one is pretty hard
    when i go in and have it done how am i going to manage ?
    i live in 1 rented upstairs room, work 0 hour contract so earn just enough to get by.
    I am just imagining everything coming crashing down on me and be left just rocking in a chair in a waiting room 
  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    You wont be left alone.  I would suggest you discuss after care with your surgeon. I went into rehab centre after the OP but was desperate to get back to my son. Maybe you can forward plan and get some things in motion. Mine was totally unexpected so I couldn't do this. Good luck it is life changing dont get me wrong but you will get support . I am here to help where I can 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    It will be all about forward planning and speaking to your Consultant, As i advised they won't let you leave hospital without support in place.

    I've given a lot of advice regarding benefits but it's a lot to take in, especially if you don't understand it. It's very difficult to give all this advice on an internet forum because we could be here forever and you still may not understand it because it's such a complex benefit system. For these reasons you really do need to get some face to face advice from an advice agency near you before you go into hospital. Please also be aware that there's a 5 week wait for your first payment when claiming Universal credit.
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Welcome to the community @gazz46 and thank you for taking the time to share this with us. It sounds like you have a lot to process and it would lead to a lot of change. It's completely normal to be worried, I hope we can support you through this.

    As others have said, I would definitely discuss after care with you consultant so you are more aware of what will happen.

    Please do let us know how you get on and if there is anything else we can do to help. :)

  • skullcapskullcap Posts: 172 Member
    edited February 2020
    gazz46 said:
    i am 48 yrs old and in the process now of deciding with my consultant if it is time to have my leg amputated as i have blocked artery behind knee and no other option is now available, with blood that is very hard to thin sufficiently.

    Is this truly the case?
    I have exactly the same issue, Peripheral Arterial Disease. I had blockages in the groin, the knee and the ankle.
    My first op was to go in at the groin and scrape out all of the fatty material all the way down to the ankle. It was disgusting as they showed it me as I was awake during the process. 
    That worked for a good few years but still smoking etc it started to build up again. The next op was to bypass the knee and the ankle with a new artery. 
    Been years now and it is still working a treat.
  • gazz46gazz46 Member Posts: 9 Listener
    the problem i have is there are no living main vessels to graft onto, which was their initial plan.
    they have since told me that as soon as i start to lose sensation in my lower leg and foot then plans will start to remove it, i have heard several different scenarios from people having success and some in the same predicament that i find myself in.
  • skullcapskullcap Posts: 172 Member
    Sorry to hear that.
    I was in that position years ago as I refused to accept that there was anything wrong. It got to a stage that I could not stand the pain any longer and the whole of my leg was while and looked like marble. Anyhow I arrived at A&E and told them that 111 had said to come down. They eventually put a doppler on the leg and found absolutely no blood supply.. They did say that if I had left it for an hour longer my leg would have to come off. 
    Good luck
  • TopkittenTopkitten Member Posts: 1,263 Pioneering
    Another Colcestrian, lol! Sorry to hear about your problem though.

    I remember that when I first became ill I did everything I could to avoid considering myself as disabled even though I was ill for years and unable to work at all. I guess it's just a label but the connotations are far-reaching, especially on the mind. All I can say is that you need to use the system and get and accept any advice you can. It may be difficult but with the system the way it is doctors especially will want to preserve life no matter how bad a situation it leaves a person in.

    My situation is almost exactly the opposite of yours and is caused by movement of the nerves in response to body movements below the waist. The more I move about the worse the pain gets. I have actually asked to discuss amputation of my right leg as it would reduce the pain considerably and I might even be able to learn to walk again instead of looking to being in a wheelchair permanently sometime this year. However, the hospital doctors wouldn't even discuss it as there isn't anything wrong with the leg per se and they wont operate on anything that doesn't really need it.

    Presently my situation regarding housing is similar though as I need to be in wheelchair accessible property and my place is more aimed at mobile aged people with narrow hallway and doorways, completely useless for wheelchair access. I have had the report but am simply just too afraid of the arguments it will take to get into somewhere else and trying to cope with the requirements of moving from one council place to another. I am housebound, though not yet quite wheelchair bound but visiting places on the list to check suitability will be a nightmare, but that's the way the system works in this council area.

    I didn't notice in previous comments as to whether you own your own home or not and, if you do, that can cause complications with both benefit and council property acceptability. You may even have to sell it and live on the proceeds as this government gives away very little, unfortunately.

    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • gazz46gazz46 Member Posts: 9 Listener
    thanks for comment and sorry to hear your situation.
    no i dont own my own home, i rent a room on top floor of a private house, rehousing once the operation has been done is my worry as here will be totally unsuitable. then obviously the need to claim money, i am by no means stupid but it is very awkward to navigate all the sites etc that the authorities provide. I wasnt sure if there was such a thing as hospital welfare that are able to assist when the event happens.

  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    Hi again there isn't really that much help in securing home from hospital you should maybe look into this prior to hospital . Your local council is the place to help they have housing officers who help. OT will visit your house from hospital and do a care needs assessment this then goes to the council and if you need rehoming will help you get into a more priority banding . You can self refer fir assessment online form is on gov.uk website enter care needs assessment. Speak to your local council housing dept and ask them advice best way forward 
  • gazz46gazz46 Member Posts: 9 Listener
    thanks, why does everything has to be so awkward, you work all your life, am still working part time though is increasingly more difficult and when you need the system there are hurdles at every stage.
    i dont think i am being particularly demanding but i thought it might be a little simpler
  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    I agree it is all complicated and a lot to deal with at the same time dealing with a life changing surgery. One advantage you have is time to prepare which is not the case for all amputees. As suggested before speak to your consultant about after care services eg physio occupational health and rehab or anywhere you can be referred to in advance. Or discuss with your gp . It wont be easy and I fully understand as I have been there . 
  • gazz46gazz46 Member Posts: 9 Listener
    Thank you
    another daft question, appologies if i go on and on lol
    what sort of place am i likely get ?
    adapted flat ? a home ?
  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    What you get will be down to availability of your council and the OT assessment . My assessment said I must have single storey property either flat or bungalow.  I got a bungalow eventually but I also have a dependant child which obviously gives higher priority I was also classed as at risk of being homeless as my property had sold and I had completion date . Dont worry about all the questions that's what I'm here for 
  • pollyanna1052pollyanna1052 Member Posts: 2,032 Disability Gamechanger
    Hi gazz, sorry only just seen your post.

    So where are you up to know? Any news on the op and your housing?

    I hope things seem brighter for you x
  • gazz46gazz46 Member Posts: 9 Listener
    No news on the op yet, i have been given a new medication to try (guinea pig)
    Is beginning to look like i am going to have to give up work, will find out how the new medication works, but being signed off work for good seem likely.
    Then i suppose the serious planning will need to begin, seeking advice from job center i assume ?
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @gazz46, I really hope the new medication is beneficial to you. The job centre would be a good place to start, but please do let us know if there is anything more we can do to help. :)

  • janer1967janer1967 Member Posts: 11,201 Disability Gamechanger
    Hi I am really pleased to hear you are trying new medication and hope it works. As you said you may still have to give up work so it is a good time to find out the information you need in preparation for this 
  • soconfusedsoconfused Member Posts: 102 Courageous
    @gazz46   I spent 10 years picking up motability cars going to Auction - trust me with 1 leg they will adapt it for you - you will still be able to drive. I have driven cars with adaptions I would never have imagined. 

    So don't give up that thought please 
  • gazz46gazz46 Member Posts: 9 Listener
    hello all
    thank you for the advice given thus far, it has been useful and i have made many notes on possible avenues to follow.
    i have another question, i have told that with my current condition i should be able to register as "disabled" is this the case ?
    if so how do i do it and will this be of benefit to me and how ?
    yes i know, more questions lol
    rgds gazz
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @gazz46, no one can be registered as disabled. However, you could apply for an AccessCard if you felt it would be helpful. Please bare in mind that not all places will use this method of authorisation for things like free carers tickets.

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