"The treatment my mother in law (now deceased) had on several visits to our local hospital."

About: Epsom Hospital / Older people's healthcare Surrey PCT / Emergency GP out of hours service The Princess Alice Hospice

(as a relative),

My mother in law had a fall in September 2009 & was taken to A&E. After blood tests, we were alerted to the fact she might have a problem producing red blood cells. When in the November she collapsed, our GP arranged for her to be admitted to hospital for a blood transfusion as it was suspected she might have myeloid dysplasia. She was admitted to the Clinical Assessment Unit where she remained for several days. Trying to get hold of a consultant was impossible, and no one could tell us anything. She was then transferred to a ward, where her condition deteriorated to the point that she was confused & hallucinating that she could see Chichester Harbour.

My mother in law never suffered from Alzheimers, and her confusion was entirely due to a urine infection but no one would listen. She already suffered from a benign essential tremor, which meant she couldn't walk easily. Lack of physio in the hospital meant her mobility deteriorated hugely. 9 times out of 10 when I visited, she was sitting on a pad or mat without having been toileted. She was often cold as no one thought to give her a blanket. She frequently didn't eat her lunch because she couldn't manage without her food being cut up. When I visited, there used to be a look of panic in her eyes, but she was a compliant patient, and partly deaf, so she said Yes to every question, and no one paid attention to what she actually needed. The nurses seemed busy and uncaring.

After a few weeks she was moved to a convalescent unit, which was much better, and we felt reassured that she was being looked after properly. However in the period coming up to Christmas, it was mooted to us that she would have to come home. Her continence at night was an issue, so without consulting us (and having asked her, an 85 year old frail confused woman with all the problems mentioned) they inserted a catheter, for which I later discovered there was no subsequent need. Then, two days before Christmas she was sent home, despite our protestations that she was too ill. I had an OT tell me almost gleefully that "We send people home much worse then her", and a massive amount of pressure was put on me to suggest I was trying to evade my responsibilities to her over the Christmas period.

(This to someone who had had my mother in law every Christmas since she'd been widowed in 2003, and would have happily had her to stay again except her needs had grown too difficult to manage. To say I was incensed is putting it mildly. Even now, three years later it makes me furious to think anyone could dare tell me how to look after someone I cared for for so many years, when they didn't seem to have her best interests at heart. )

My mother in law came home. Thanks to her weakened state, she needed carers 4 x a day, (before that, she'd coped with 1 a day), but the care rotas for Christmas had been set so we had to make do with what they could give us. My brother in law had to fit a key safe as there wasn't time to get the one the council was meant to supply. No one did an OT assessment, no offers of physio were forthcoming. And she was very weak, and still confused.

Our GP came to see her after her discharge, and we had to call him out again on Christmas Eve as she was weak. We had planned to bring her to us for Christmas Day, but she said she didn't feel well enough (this was very unlike her, so we knew it was serious), so we said we'd bring Christmas lunch to her. When we arrived the next day, my brother in law was already there, and my mother in law was still in bed. She was in huge pain and couldn't get up, so we called the emergency doctor who prescribed morphine. My brother in law stayed with her till we had lunch and then we swapped. We came with the children and sat on her bed and gave her presents, but later she had no recollection of the events, she was too ill.

On Boxing Day she was well enough to come to us for a few hours (we lived up the road), but the next morning I had a call from the carer. Her overnight catheter bag had been fitted improperly (I was given very scanty instructions how to use it and the carers didn't all know), and had leaked everywhere. My mother in law had got out of bed and gone to the spare room at 6am, and was found by the carer at 9am, shivering and in a terrible state. We called the District Nurse, who refitted the catheter and said that she shouldn't have been given it.

Later that week we called the DN again as she was having more problems, and on New Year's Day my brother in law rang from A&E to say she had collapsed and had been taken in. She was then discharged, but returned the next day as once more she couldn't stand. This time we insisted she was admitted again - and thanks to a very pushy sister in A&E she was. So then it was back to CAU, more tests, more lack of information, before finally we saw a consultant. By this time we knew she had myeloid dysplasia, but we never saw the haemotology consultant, but the urinary one, who (thanks to me complaining) subjected her to a barrage of tests, which were in the main unnecessary. Her incontinence was a result of the shake she had and nothing could be done about it. However, I subsequently learnt with bigger pads and kylie sheets on the bed, she didn't need a catheter. And with pushing from us she was put on prophylactic antibiotics, and lo and behold our bright sparky mother in law was restored to us. She then came out of hospital and was well for a year or so.

Two years ago, I mentioned to the GP she hadn't been having regular blood tests as advised by the hospital. When she was tested her blood counts were low and eventually she was admitted to hospital overnight for a blood transfusion. We spent hours in A&E, despite it being a referral from the GP, and she was only admitted, onto CAU at 8pm. When I arrived to visit the next day, I thought I would have to leave at lunch time as they have a closed door policy (which doesn't work in my opinion unless the nurses/HEAs help patients eat), but when I mentioned my mother in law needed help, the nurse said abruptly, "good you can help her. " She then needed the toilet, and the nurse was very unhelpful (I didn't want to take her on my own as she was attached to the drip). Eventually, after several requests the HEA and nurse helped her. It was a long walk for my mother in law, and they left her at the door of the toilet, to make her own way in. Inevitably she had an accident. The nurse had been so stroppy about the whole thing, I cleared it up. I couldn't be bothered to ask for help. My mother in law was only in overnight, but I was appalled at the lack of dignity and respect she was given. If we hadn't been there to fight her corner, what would have happened?

After this my mother in law was then diagnosed with leukaemia and given blood transfusions palliatively. Here I can say her care was fantastic, the nurses at the day unit where she went, couldn't have been kinder. But it wasn't set up for a patient with her disabilites, and the whole experience was nightmarish for her.

Eventually in September 2011, she became ill and her back started causing her immense pain. When she couldn't get up one day our GP admitted her to A&E. Again, we waited around for hours (despite having been sent in by the GP), and as I had given her tramadol for the pain at home, the nurse on duty told me she couldn't have anymore pain relief, despite the evident pain she was in. Repeated requests for the use of a bed pan were ignored, so my mother in law was left in her wet clothes for hours. A doctor wrote her up for morphine but it wasn't administered till my husband had to beg for it. After about 6 hours, during which she had been in pain and discomfort, she was admitted to CAU once more. I wanted to go into the room with her to hold her hand, but the nurse shooed me out. My husband and I sat outside while we overheard her crying out in pain, and then being told off by one of the nurses for gripping her arm tonight "Don't grip my arm so tight, you'll break it, " she was told. No consideration was made for the pain & distress she was in. For my husband and I outside it was horrendous. When we left the hospital that night we felt so guilty because we knew she didn't seem to getting the care she deserved.

CAU was in a state of flux as it was temporarily based in another ward. So it was harder then ever to get information about what was going on. My mother in law was given no physio. So despite being able to walk before she came into hospital, after three days she could no longer stand. One day I arrived to find her being "toiletted" by the physio and an agency nurse (most of the staff seemed temporary). Despite the fact she had soiled herself, they left her as the physio had to go and the nurse informed me she couldn't have lifted her on her own. I would have helped, I'd done it dozens of times. I went to pick the kids up from school, but returned later to find her still sitting in the same soiled night dress, and freezing cold. I complained and no one listened.

After five days she was moved into a decent ward, where amazingly someone offered us both a cup of tea. That simple gesture of kindness was enough to reduce me to tears. It shouldn't be like this.

Thanks to huge amounts of determination, my mother in law got herself up and walking and was soon home. The next blood transfusion proved to be her last, and the doctor was all for admitting her again, but we refused. Thankfully the consultant agreed and referred her to the Princess Alice Hospice where she eventually died, I am glad to say with the standard of care and compassion which should be available to all patients. We were so glad she didn't die in hospital. That would have been the worst possible outcome.

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