"Little care and support for me and my wife"

About: West Kent PCT

(as the patient),

Every morning I wake up, I wish I wasn’t here. I feel there is no such thing as care and support, or palliative care. I have had Motor Neurone Disease (MND) now for more than five years. In all that time, I feel no one has helped me or my wife. My wife cares for me 24/7. My wife not only cares for me, she has to do a forty mile round trip to take her 90 year old mother, to her local surgery just to have flu jab, then she has to make the same journey again, a few days later to take her mother to the surgery to have her toe nails cut.

That's because the District Nurse and Chiropodist refuse to visit my wife’s mother. When my wife leaves me to go to her mothers, I’m stuck at home on my own for anything up to five hours. Í have great difficulty to stand and walk with a frame, and speaking, I have almost lost the use of one arm. When my wife went to her mothers about a month ago, I fell backwards in the toilet and badly injured my back, and there I sat waiting for my wife to come home for more than two hours. My wife called the Doctor; I waited two days before the Doctor came out to see me. A week later I fell on my backside again, and two days later I fell on my backside a third time, the pain in my back now is excruciating.

My wife had to go and see the Doctor herself the day after I fell the third time. She told the Doctor I had fallen over twice more since he had come out to see me, but she thinks the doctor was not concerned about this. I still have a lot of pain three weeks on. The district nurse still has not come out to give me a flu jab.

Having paid all my taxes and NHS health insurance, I feel I have not been given back what I deserve. All the equipment that I need to help me get around the house and outdoors I have paid for myself. These include a stair lift, a wheelchair, ramps, handrails, grab handles, bath lift, rise and recline chair, scooter, and a electric bed.

For five years I had a physical therapist visit me once a month where they asked me questions on my well being and tick their boxes and they would say see you next month. I didn’t feel like they really cared. Any equipment I asked for never materialised.

I fell over two years ago and broke my hip so the hospital told me to ask the physical therapist for some physio when I came home, but I never got any. Instead, I paid for a real physio privately in my own home for two weeks. I wonder what palliative care is because I don’t believe I have received any. All I want is to be out of this country as I feel like I am losing the little bit of dignity I have left. I do not want a Peg, catheter or a nappy, and I don't want to be humped up in a hoist or lumped around in and out of beds.

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