Having cared for my husband with Lewy body dementia at home I found the care wanting. The GP is not in the NHS and runs a business so wants to cut costs. I requested to change his medication from tablets to liquid when my husband could no longer manage tablets and was told it was too expensive. I was warned by his consultant no medication, apart from what he gave, would help but others could have severe detrimental effect. I contacted his NHS consultant and he got the medication sorted. My husband had not been seen by a GP for over a year. I was concerned as he was sleeping more. I rang the Parkinson’s nurse for advice. One night I had to call NHS 111, he was getting spasms. One of the practice GPs came to the house. He assured me he was not near the end and was fine. He was then in problems a month later at the weekend and I rang NHS 111. He was unable to get up and was getting severe spasms. A district nurse came. The next day I needed more assistance and rang the surgery. The GP said a district nurse would come that afternoon. The district nurse rang up and said she was too busy and would come the next day. She came the next morning but had to discuss the treatment with the GP as she could not sanction it so the medication would not be started till the following day. Here we are discussing end of life care. GPs need to be brought back into the NHS, they need to employ sufficient district nurses to give humane care and do on call again in their contracts so patients are cared for properly. They are doing out of hours for yet more pay. Nobody had an overall picture of my husband’s care. I was doing my best and ringing up the social worker, occupational therapist ( council one), Parkinson’s nurses for help/advice. When that failed I turned to relatives who were doctors.
When I could no longer manage my husband alone I needed the help of carers. I contacted the social worker. The care package was asked for in August and I got it in February but the carers were not all trained. It took two people so I was working with the one carer I was allotted. The carers were starting to be clocked in and out. Carers need to have qualifications in moving and handling and basic care. They need to have some flexibility in the time at each place as sometimes things take longer than anticipated and other times it can be shorter. If carers were part of the NHS then the requirements of an individual would be appreciated and hopefully suitable care would be given. The occupational therapist trained me on using a four way glide sheet and asked me to train the carers. She was so helpful. The district nurses now just administer drugs and are not involved with care. We need nursing back and this is what a carer should do for people who require it. The social worker had not appreciated my husband’s poor mobility so only allocated one carer. She could not get two when asked to. When my husband’s condition deteriorated I got my sister as he needed changed between 8am when a carer came and 5.30 pm when a carer came. She had looked after my mother at end of life and was a consultant anaesthetist. If I had not had her I would have had an even more challenging time. For the final 3 days of my husband’s life we got exemplary end of life care.
The whole setup for care is fragmented. This results in an inadequate service and the relatives having to fill the gaps. If social care was not separate and not outsourced then a more joined up service would result and the professionals would all have access to the same notes and could build up a more holistic picture of a patient’s condition. My contact with the Parkinson’s nurses was invaluable but none of that was recorded. One came to the house before just Christmas and asked me about his incontinence. She actioned a practice district nurse to contact me. I got much better pads and no longer had to change the bed every day. I knew my husband’s health was declining but nobody else, apart from the council occupational therapist who bothered to come and see him, would believe me. I kept him smart and as fit and content as I could. There should be a team of doctors, nurses, therapists and social workers looking after a patient so a holistic approach is nurtured. The doctors would then learn more about dementia and be able to be more supportive. My husband was more aware than they gave him credit for. They knew nothing about the spasms in very late stage dementia. These are distressing for both patient and carer. My sister who was a neurologist diagnosed them.
The best help came from the NHS providers, Parkinson’s nurse, consultant and the council’s occupational therapist not from the private sector. To reduce abuse of the NHS could a nominal fee be charged for a visit so people do not go just to get free drugs that are cheap like paracetamol etc? If the doctor requires a follow up appointment this should not be charged.