All Change

I drove the car to the Care Home while my daughter went with Rosemarie in the ambulance. The driver said they were running over an hour late and proved it apparently by driving like Lewis Hamilton. I arrived at the Care Home at 5.15 and the ambulance arrived at 5.30.

Rosemarie was whisked to her room where is was discovered that the mattress had not been changed for an air mattress as required (worry about bed sores). She was distressed and uncertain about what was going on, and it was not made better by having to be hoisted into a wheelchair so the ambulance men could take their stretcher.

While the mattress inflated we took her down to the garden but it was late in the day and a bit cold. She didn't really enjoy it and we didn't stay long. The Sensory Room, also on the ground floor, was more successful. The lights and bubbles seemed to calm her a bit.

We went back to her room and she was hoisted back into the bed. The nursing staff brought her a late supper of some mash and a yoghurt, and after that they changed her. She seemed distressed and restless and my daughter and I tried to calm her. At about 10 she was given a sleeping tablet and some paracetamol. She was still restless when we left at 11.

It was with some trepidation that I phoned up the following morning to find out how she was.

To recap: Rosemarie had been in hospital two months during which she had only been out of bed a few times, and even then hardly successfully. She had not used the toilet in that time, and had spent most of the days restless, weeping or asleep. Other than yoghurt and trifle she had not eaten much. The physiotherapists told us to expect her to remain bedridden for the rest of her life and the Speech Therapist doubted she would ever eat normal food again.

The Care Home answered promptly and put me through to Jennifer, the nurse assigned to her. Rosemarie had experienced a restless night, but had woken up OK in the morning. Jennifer then casually told me that she had been taken into the en suite and had a shower and had her hair washed, been lifted onto the toilet where she did her first bowel movement in a toilet in over eight weeks, and was wheeled into the Lounge where she had said Good Morning to everyone. She ate most of her breakfast.

Wow. We were pretty impressed. Not bad for a first morning.

I arrived about 10 to find her still sitting in the lounge and she seemed pleased to see me. After a while she was lifted from the wheelchair into one of the high backed armchairs (no hoist). I had to leave about 11.30 to go home and pick up the labeller (everything in her room needs to be inventoried and labelled). When I returned she was tearful but the care workers told me that earlier she had been singing along and clapping. After eating half her lunch she seemed tired so we took her back to her room where she had a sleep for about an hour. My daughter arrived and we had her assisted into a wheelchair and took her down to the garden again. She sort of enjoyed it but I had the feeling it was alien to her to be outside.

We came back upstairs for supper at 5 (she ate half of it and all the ice cream) but got tearful afterwards, particularly when my daughter left. She cheered up when my son arrived early evening and was relatively calm when we left at about 8.30.

It certainly felt different from the hospital and there was a distinct can-do attitude that was refreshing. Very early days though, and we were warned that the move itself was likely to result in deterioration. The disease hasn't changed, just the setting.

But I allowed a cautious hope to flutter in my heart.

What a Discharge Co-ordinator does

We don't regret it so far

There is a lot to catch up. Here we go.

I informed Alison of our decision and there was no sharp intake of breath so I felt we had at least made a safe choice. She pointed out that there was still some paper work to go through and it was unlikely the move would happen before Thursday or Friday. I told her we didn't want an end of week move because we knew there would be a smaller staff at weekends and we wanted it to go as smoothly as possible. We didn't want Monday because my daughter could not make it and wanted to be there, so we pushed for Tuesday. Alison did not seem to think this would be a problem, however she did say that she was on holiday the following week and would transfer discharge co-ordination to a colleague in a different ward.

I called this person (names are being redacted to protect the guilty) and checked if there was anything I needed to be aware of in my next meeting with the Care Home the following day. It all seemed fairly straightforward until I casually mentioned that because Rosemarie was a category 1 patient I would be requesting one to one 24 hour care. Bombshell. "You won't get that. In fact you won't get any one to one care at all so there is no point asking for it. It is too expensive." What? Screeching of brakes and immediate tunnel vision.

I made sure I had heard correctly and put the phone down.

And picked it up and phoned back to speak to the Consultant. Not available. Left message. Please call back urgently.

She called back after an hour or so and I explained what I had been told. "I don't know why you were told that. Rosemarie has been approved for whatever care is needed. You may not get 24 hour care but it is not true that you won't get anything. I will Have A Word with [the person]"

Floods of relief.

The next day we went to the Care Home and had another look round and met the Care Home Manager and the Care Manager. We were quite happy with them and also loved the room we were shown that would be Rosemarie's. We talked at some length about her needs and I said I was particularly concerned that she have someone with her at all times. The manager, Neela, said that she would be reviewing the notes the hospital were sending and work out what was best for Rosemarie. She stressed that the home was different from a hospital and that Rosemarie would react differently. We went away happy, having agreed to return at the weekend with clothes, pictures and ornaments to make the room feel more familiar.

I phoned the following day to find out how things were going and discovered the The Person was telling the Care Home that Rosemarie would not get one to one care and accordingly Neela had only asked for six hours a day, expecting to have even that rejected. Having submitted the form she was unwilling to phone up and change it, and pointed out that I had arranged with the Consultant for an onsite review after two weeks, and we should see how it went. I reluctantly agreed because I didn't really want to do anything to delay the transfer, and this situation had Long Drawn Out written all over it.

The weekend arrived and we turned up with clothes etc. to be told we couldn't have access to the room because it was being redecorated. So we came back Monday. This was like wading through porridge.

The move. We were warned it might be traumatic and would probably result in a noticeable deterioration anyway. It was scheduled for the Tuesday at 11 and we duly arrived in good time. We had tried to tell Rosemarie that we were moving her from the hospital to a place where they were specialists who would help her get better. I am not sure how much she understood.

About 11.30 we started asking how soon she would be going and were told that there was one person ahead of her on the list. There was lots of bustling around by nurses sorting out medication, notes and various other administrative details.

I had brought with me a large box (shoebox size) full of sweets and a Thank You card for the nurses. This was enthusiastically accepted (the box of sweets I mean) and we had a procession of smiling people thanking us.

By 12.30 we were getting a bit bored with waiting and on investigation it turned out that there was still one person ahead of her in the queue. I asked how many there were in the queue ahead of her at the start of the day but nobody seemed to know. Not the nurses. Not Transport. Strange.

By 2.30 we were getting quite cross. I am used to delays in situations like this but three and a half hours seems like seriously bad organisation.

One of the nurses came back from her lunch break and was astonished to see us still there. She said she would go down to Transport and find out what was happening.

Apparently the 11 o'clock schedule meant absolutely nothing. Discharges in wheelchairs were always done first, for some unexplained reason, and they were still happening. The One Person Ahead Of You thing seemed to be the NHS equivalent of The Cheque Is In The Post.

Celia reluctantly had to leave to catch her train back to Derbyshire (she had been in London since Friday helping out). She was frustrated not to be able to help settle Rosemarie.

I called the Care Home to apologise for the delay (I had a strong feeling nobody else would have done this) and found out that they didn't really like receiving patients after 6 pm. Since it would be a good 40 minutes through rush hour traffic the clock was clearly ticking.

Ten to four. Ten to four and two guys arrived with a stretcher and immediately disappeared to go through the paperwork. Tick Tick Tick, About 4.15 they came back and transferred Rosemarie to the stretcher. A few nurses came in to say a hurried goodbye and we were on our way.

So I had been involved in a lot of calls getting all this going. The nurses had organised the transfer notes and medication. A nurse had liaised with Transport to find out what was happening.

What does this particular Discharge Co-ordinator actually do, apart from give out misleading information?

Bugger all, seemingly.