"Concern about my father's care on South 6"

I went to South 6 to support my 86 year old mother while visiting my father (85) who was in hospital after a heart attack, a month after a stroke, 2 months after being diagnosed with dementia. She was sitting outside the ward listening to my father screaming in pain while his nappy rash was treated. Not having enough staff to accompany him to the toilet they expect him to sit in his own ordure and being on high steroid doses the skin has broken down. But we had not dared ask questions like "'Are you looking after his bottom properly?" for fear of the offense that would cause.

Having been previously shouted at for having the temerity to ask for a urine bottle, and for pointing out that the floor was sticky and needed washing, we were learning a culture of accept what you get. So we were grateful that his bottom was being cleaned and tried to write his screams off as over reaction. We were used to ignoring the screams from the man in the adjacent bed anyway.

Mum thought that dad might be coming home on Friday, so I did the 90 mile round trip to help establish what support he would need. As self-payers we have to organise and pay for all home care, so it is useful to have guidance on what he now needs in view of his continuing decline.

On his previous discharge from a different ward in the same hospital they had a family meeting case conference to detail a care package. It sounded wonderful : there would be advice on carers (which turned out to be a faxed list of agency phone numbers) and there would be continuing vital physiotherapy (which because of shortages we are waiting 9 weeks for). We had not been called for such a conference at South 6, so I joined my mother (who was used to going in every morning despite visiting times being 2 - 8 pm) in the hope of confirming what we need to organise for 2 days time. Mum felt that she was useful in helping him to brush his teeth, shaving him and encouraging him to drink which he forgets to do.

When the screaming stopped we were called in to join him despite it not being visiting hours and I was able to ask the nurse to confirm the time scale, the level of care needed, the diagnosis and the medication he would be on. They wanted to reduce his steroid dose on a weekly basis, despite the fact that last time that was tried he landed up progressively disabled until he had a stroke and was half paralysed. I explained to the nurse that the proposition of going through that again was frightening:she offered to find a doctor to explain the decision that had been made in isolation from the family with my father who is suffering from dementia.

A very helpful junior doctor came to see me who explained that they had concluded that the steroid reduction and the stroke were coincidental rather than related events. Having seen his decline into incontinence and unintelligibility prior to the stroke I could not have confidence in that assumption. She kindly described a more gradual way of reducing the steroid dose and was just in the process of trying to confirm for us what diagnosis they had made on my father when she was called away for a phone call by another member of staff.

She left and he remained to berate me for being there outside of visiting hours. He told me that the time for talking to doctors was from 2 - 5 pm only. Having established he was the ward clerk I asked where this was explained. He took me to a rack of leaflets (having found that there was not one displayed by the bed) and could find nothing about how and when families could get any information about their relative's care. This information is vital when the patient's short term memory has all but disappeared and discharge into the care of the family is imminent. I explained that I had to leave at 2:00 to get my child out of primary school the other side of London and needed to help my mother who was expecting a disabled man home in 2 days.

The senior nurse came back to defuse the situation and tried to be helpful. I was distressed by the knowledge that my mother would once again be struggling with trying to get the vital pills into my father with no help from district nurses. They seem to have unilaterally decided that they will not help with the administration of medication, and there are still at least 2 weeks before the the physiotherapy will even start.

The only time when my father has been 'my father' since last October, has been when he has been on a high steroid dose. Taking that away from him again is tantamount to an intellectual death sentence combined with double incontinence and the failure to recognise what to do with cutlery. Reducing that drug dose without discussion is cavalier to say the least. The hospital doctors' confidence that the GP could or would monitor the reduction in steroid dose was not shared by us, he even failed to take a pulse when called out while my father was declining to his heart attack, The helpful nurse said that we should complain about the GP but how can you when your father is imminently to be discharged into that man's care?

We left after a nurse (not a ward orderly) had handed dad a glossy brochure giving him his food choices in print too small for him too read and too much choice for him to hold in his limited short term memory. If only the nurses could spend more time nursing, which with the elderly mentally infirm should include toileting, dad would not have been screaming in pain and we would not be so distressed that we feel that we have to go in outside visiting times.