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Spinal cord injury - Carers UK Forum

Spinal cord injury

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Hi my husband has a spinal cord injury after falling down stairs at home. He is now a tetrapligic. So I am now his carer. I feel very isolated as no one in my area seems to no a lot about his injury or how to help him. He has got so down that he has all but given up on getting any better and I dont no how to help. Our relationship has change so much I miss the old him.
Jo_1911 wrote:
Sat Nov 16, 2019 6:31 pm
Hi my husband has a spinal cord injury after falling down stairs at home. He is now a tetrapligic. So I am now his carer. I feel very isolated as no one in my area seems to no a lot about his injury or how to help him. He has got so down that he has all but given up on getting any better and I dont no how to help. Our relationship has change so much I miss the old him.
Hugs and welcome to the forum. My little brother has open spina bifida (not the same but similar) so I fully understand your emotions etc. His lesion level is at the top of the spine and goes downwards. Have you contacted a SCI charity or not? This link may also be useful as well.
https://www.spinal.co.uk/learn/understa ... ing-sci-2/
https://www.spinal.co.uk/how-we-help/pe ... t-service/

Have you heard of the above?

If you can get some local support for husband. This will help you in the first instance and can open over avenues.

https://www.backuptrust.org.uk/support- ... ily-member

Make contact with your local carers group.
Hi Jo, welcome to the forum.

You are probably both going through a grieving process. However, I'm really concerned that you don't mention any help from outside the home. Have you slipped through the system?

Before discharge, did the hospital arrange a Care Plan for your husband, free carers coming into the home for 6 weeks?
Did they look at your home and arrange all the aids and adaptations which were needed?
Did anyone talk to you about a Carers Assessment?

How old are you both?
Is your husband now receiving Attendance Allowance (if over 65) or PIP (if under 65)?

If he has any insurance policies, check to see if he had any Accident Cover or similar.
Jo_1911 wrote:
Sat Nov 16, 2019 6:31 pm
Hi my husband has a spinal cord injury after falling down stairs at home. He is now a tetrapligic. So I am now his carer. I feel very isolated as no one in my area seems to no a lot about his injury or how to help him. He has got so down that he has all but given up on getting any better and I dont no how to help. Our relationship has change so much I miss the old him.
Have you asked the doctors for help or not?
Hi thankyou for your messages. We have been in contact with sca and backup. Back up gave me some support over the telephone at the beginning. Colin has carers in the morning to wash and dress him and at lunch to give him some lunch that I prepare before u go to work. As for adaptions to our home we had the front entrance altered so he can leave the house in his wheelchair through the council but they put a levy on the house of £5000 which we have to repay if we move.
Colin cant access the bathroom for a shower. I'm afraid to ask for help with this as they may want to put another levy on the house.
I very often feel I am not caring for colin properly as I work 12 hours a week. But as selfish as it sounds I enjoy my job and work is my time.
Jo_1911 wrote:
Thu Nov 21, 2019 5:48 pm
Hi thankyou for your messages. We have been in contact with sca and backup. Back up gave me some support over the telephone at the beginning. Colin has carers in the morning to wash and dress him and at lunch to give him some lunch that I prepare before u go to work. As for adaptions to our home we had the front entrance altered so he can leave the house in his wheelchair through the council but they put a levy on the house of £5000 which we have to repay if we move.
Colin cant access the bathroom for a shower. I'm afraid to ask for help with this as they may want to put another levy on the house.
I very often feel I am not caring for colin properly as I work 12 hours a week. But as selfish as it sounds I enjoy my job and work is my time.
Same. I need to work. It helps me stay fit and sane. Have you looked at adapted showers or not? Contact the Disabled Living Foundation they can help.
I've never heard of a levy on the house to get an adaptation before.
Not sure that's legal, I'll have a look in my book when I get a chance (have to paint some skirting in a minute!) What explanation did they give? Too much income, or too much savings?
Ask Social Services to arrange an Occupational Therapists appointment to get the ball rolling as far as a shower is concerned. (There may be funding from different sources)
I've never heard of a levy on the house to get an adaptation before.


I've known several over the years for homes specially adapted beyond mere cosmetic changes.

I'll research to provide the legal basis ... if necessary.

Shelter would be a short cut !
Historically, if a social housing tenant/property. The expectation to put in large costly adaptions. The recipient would be expected to use the adaptions between 3 to 5 years before leaving/moving on from the property. Hard to enforce I know. But it is the public purse. So there has to be some form of criteria.

I guess if an home owner and depending on the local authority criteria. The criteria is if one moves before the end of the expected agree time. That money is payed back.