Thou shalt find the winter's rage

Perhaps I shouldn't only blog when I'm promoting myself or angry about something but, well... tough. I'm completely at my wit's end and so utterly fucked off that I need to vent a certain amount of frustration.

It's a long story. In April, my mum, Janet, was finally admitted into a residential care home. What I didn't mention before was the sheer application of will and effort that it took to get that far - and how I had to jump through the many hoops the local council care services and finance teams had presented along the way to secure that place. There were countless forms, assessments, reviews and agreements to be made and/or signed before the simple act of moving one very sick 63 year-old lady less than a mile to her new room could occur. It was a huge relief to have finally achieved it, not to mention the added comfort of knowing that, finally, professional carers would be looking after Janet 24/7.

At the end of October, however, (whilst celebrating the mother-in-law's 60th in Gloucestershire) my wife and I received a phone call to say that Janet had had a fall and been taken into hospital with a fractured hip. Since then, our lives have been transformed into an almost constant battle with bureaucracy to ensure the continued wellbeing, treatment and care of my mum.

What I need to explain is just how difficult it has been to find out anything from the hospital staff themselves. To begin with, no effort was made to inform me, Janet's next of kin, as to the extent of her injuries. No amount of querying on my behalf would result in a consistent answer. No doctor or consultant was available to tell me whether or not Janet had been scheduled for surgery and no nurse or sister was available or able to tell me what level of care or support Janet was getting in the ward. The disjointed shift system meant that, for over two weeks, no single staff member was around to ask from one day to the next. No information about the patient advice and liaison service was made available. No contact numbers were given. At times it was like a game of Chinese whispers.

Four days in, and Janet's "emergency" hip replacement had still not taken place. Only after I decided to take unpaid leave from work and literally sit on the ward for an entire day was any effort made to provide an explanation.

The day after her operation, I went to visit my mum and found her soiled bed clothes from a day or two previously had been stuffed into her bedside table and left there. No effort had been made to contact me to let me know that they should be collected for washing. When I complained, I was headed off by the ward sister who assured me it wouldn't happen again and that, in any case, any complaints to the ward manager (whoever or wherever he was) inevitably would lead nowhere and would just make life that bit harder for the staff on the wards.

In the weeks that passed thereafter, it became apparent that Janet was unsuitable for physiotherapy rehabilitation (due to her dementia and the consequent inability to take on board or learn from instructions) although, once again, no one told me that physiotherapy had either commenced or ceased.

Then, the residential home turned up and re-assessed my mum's state of health, deeming themselves no longer able to care for her. This meant they would not take her back into the home under any circumstances (apparently based on their personal judgement that Janet - who was understandably very stressed and confused by the whole situation of being in hospital - was no longer able to feed herself and now required assistance to move from bed to chair and back again). I disputed their assertions, explaining that back in familiar territory, Janet would be sure to return to her old patterns of behaviour (indeed, she was entirely capable of feeding herself immediately before her accident). But the judge's decision was final. In fact, the care home had actually attended two assessments (the first one carried out without my - or the hospital's - knowledge) and the decisions made, I was told, based on an overheard conversation between two of the hospital nurses.

Janet was therefore now homeless and an entirely new set of nursing assessments would have to be carried out to decide exactly what level of nursing care she needed and where would be a suitable nursing home (see the distinction between "residential" and "nursing") to accommodate her. It's interesting to note that the care home's definition of nursing needs is entirely different to the hospital staff's definition of nursing needs and that, in fact, the two assessments are conducted entirely independently.

Thus began a new set of procedures, this time carried out by the hospital's discharge coordinator (who works across nine wards; that's cutbacks for you) and occasionally punctuated by various members of the hospital's social work team and the local council's adult care team attempting to find out (from me) exactly what was going on. Of course, it's too much to ask that the disparate social work teams communicate with one another without using me as a middle-man. (If you've ever attempted to return a call from a social worker, you may be aware that the phone receptionists are not allowed to put you through but instead pass on an email to say that you've called. Never accidentally press "reject" on your mobile if a social worker is calling, as you may never speak to them again.) Adding a further level of excitement to matters, the financial dept. of my mum's (now previous) care home continued to pursue unpaid fees that were, according to financial agreements met pre-April, originally arranged to be paid for (in lieu) by the council themselves.

In order to fund a place in a new home, however, further decisions needed to be taken about my mum's state of health. To achieve nursing support funding, she would need to be deemed medically unwell enough to pass through a panel review. The panel decide based on nursing reports and a "two tick" system - if the patient receives more than two ticks then they should, in most cases, qualify. Being unable to walk unaided and requiring assistance to eat/toilet/wash (the two reasons given by the residential home for not taking Janet back, remember) are two tick-qualifying reasons for nursing support.

Despite this, however, the mysterious, anonymous financial panel (who I picture looking, and behaving, not unlike the council of shamen from The Mighty Boosh) decided yesterday that Janet does not qualify for a funded place in a nursing care home. Which leaves her in the position of being a) too sick for a residential home place and b) not sick enough for a nursing home place.

So Janet is now taking up a hospital bed, unable to walk, toilet or feed herself, is not receiving any rehabilitation to help her communicate or get mobile and cannot be discharged to another place of residence. How is this helping anyone? Why is there such a lot of red tape to be cut through just to get some kind of support? Why is it impossible to find out exactly who to talk to and what questions to ask? Why is there no single person to liaise with or contact who knows exactly what a patient's status is?

Last year, I took my mum to the local carol service - she was an active churchgoer until fairly recently - and she spent Christmas Day (and Boxing Day) with me and the family. This year she will be spending Christmas Day in that ward, in that bed, on her own. I wonder where the board of governers of the Princess Alexandra hospital will be spending their Christmas.