NHS England: A Call to Action
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My name is Karen my husband Gavin has a G4 brain tumour and is currently on pallitive care, because he is taking steroids to control the swelling around the tumour he has gained a lot of weight and can no longer walk, I am caring for him at home with the help of careres although they are not here all day, to make matters worse I had key hole surgery on my Knee 5 weeks ago, so when he needs to go to the toilet I have to assist him if he wishes to get out of bed before the carers get here I have to assit him (they dont sometimes show up till 11/11.30 am) If he wants to go to bed before 10am and the night carer is not here I have to help him). so I have been asking for 2 things to help me do this a riser recliner chair - as him sitting in the wheel chair all day is uncomfortable for him and it would get him on his feet so I just have to turn him round and put him in a wheelchair, a hoist to help me with the toilet problem, I have been requesting these for 3 months even the carers are having problems and there are 2 of them, the Distric nurses say its the OT that have to sort this out, the OT say its the distric nurses that have to request it, we evently got a OT rounf here on the 1st of Sep, yes you need a hoist....oh there are none in stock but they come back all the time...that was nearly 3 weeks ago, the last 2 weeks we have been calling them and are getting sent round in circles, calling the district nurses who say its not them and to call the OT, who say call the distric nurses, we have now been intouch with social services who gave us a phone number of the OT ,and yes we called them who again said it was the distric Nurses, who gave us the Social Services number!!!!!.

Got to admit sometimes I sit here and think....you know what it might just be better if we both die.

2 Replies

My advice to you is to contact you MP and tell them this tale.

You may then get a better response.

1 like

Hi what an exhausting time. I don't l know if you have a hospice that you are in contact with. If you are they may loan equipment. My friend was loaned a recliner chair. The hospice was her chosen final destination. A hospice may loan you a hoist?

Thinking of you two