Wednesday, 11 December 2013


I note the UK Government are going to double their budget for dementia care according to the Gruniad and other media.

As usual, hidden away in the detail, we are talking about the doubling of the NHS England budget for dementia care masquerading as 'UK spend'. As anyone with any grasp of basic arithmetic knows multiplying any number which is near to zero as makes no difference does not create as impressive a result as the idea of 'doubling the amount' actually sounds. Further it is not clear in any report if this is 'new money' or just another 'Rob Peter, to pay Paul' scenario so common in this and the previous UK Government's dealings with the NHS in England. The question comes down to just how far can you trust a man and a party which is selling off the NHS in England, by the back door, to Capita, Serco and US Healthcare companies?

Meanwhile, back in Scotland, I and my sister are dealing with the raw face of dementia and have been for the last three years while Fife NHS and Social Services played pass the parcel with our mother. The signs have been there. Four years ago my mother  was already having all her conversations with me in the context I was my father. The occasional slip could be mistaken as 'old age' but for two hours at a stretch being called 'Tom' became very trying. My sister was getting it far worse as she was being accused of only visiting to steal my mother's money and not being her daughter. I am a retired dentist, my sister was the Head OT for Psychiatric Geriatrics and Dementia in the Highlands so we talked about the signs and symptoms we were seeing that clearly our presence was triggering. For the two years prior to our mother excluding us from her life by giving her solicitor 'power of attorney' we attempted on numerous occasions after our mother being hospitalised to hold a proper case conference and assessment prior to her release in concert with the GP, Fife Social Services and Fife NHS. Somehow NHS Fife always managed to discharge our mother before this conference could take place. On two occasions NHS Fife sent our mother home with out informing Fife Social Services or my sister and it was only due to the care and diligence of my mother's longstanding neighbours, her return home was notified to us, so in turn we could ensure Fife Social Services re-commenced my mother's care package and ensured 'basics' were in our mother's fridge - we had already ensured there were a supply of 'chilled meals' in my mother's freezer. The company supplying my mother also had to be informed of her return to ensure there was no over stocking of the chilled meals.

It was one of our mother's best friend's who warned us about our Mum's 'Mr Kipling' dietary regime which was all she would eat for a two month period. Yet this, apparently, did not raise any concern amongst her 'carers' nor did the bouts of frank melena and diaorrhea which left my mother's bathroom carpet sticky under foot after being 'cleaned'. Even when my mother began to abuse her emergency call system, no one on the NHS Fife or Social Work side took any notice, in fact Fife Social Services threatened they would remove the emergency call facility if my mother did not stop abusing it. The steady drip, drip, drip of signs of our mother's failing mental state continued to be ignored by the system which was supposed to care for and monitor her. The saddest thing is we are not alone with this experience of NHS Fife and Fife Social Services concerning parents with slow onset dementia.

After a year of handling my mother's affairs and experiencing her mood swings, changes of mind and the frustration of banging the solicitor's head against the brick wall of NHS Fife and Fife Social services with power of attorney, my mother's solicitor contacted my sister as he had come to the understanding, we had set out to him two years previously when our mother shut us out of her life. Contact was basically 'keeping us in touch' with our mother's affairs but clearly identified the solicitor's concerns. In a nutshell the 'nice, old, smart, sharp client' the solicitor had been dealing with on and off since 1988 was no longer present. A year ago in an attempt to persuade my mother it was maybe time to voluntarily enter a care home as her neighbour's and friend's health was failing and their ability to look out for her less reliant (they are, after all, in their late 70's and early 80's as well), I wrote to her. As a result the solicitor was subject to an interview laced with hatred and bile - me and my sister were just after her money and 'wanted the house' any idea we cared about her was a 'front' to get at her money. The tirade clearly left the solicitor concerned about her actual mental state, as was reflected in the next official 'contact' with us.

This is all happening within the frame work of a system in Scotland which is better resourced than the equivalent system in England. Yet it is a system which still struggles to cope to meet the actual needs of people with dementia. The system struggles within a budget constrained by the linking of NHS Scotland budget to the English NHS budget coupled with the removal of some £20 million plus per year from the Scottish Social Work's budget share by Westminster (after Gordon Brown's huff that the SNP won most seats in 2007 at Holyrood) for putting this 'free' home care package together in the first place - ironically one of the best things the Labour / Libdem coalition at Holyrood achieved in its tenure.

The point becomes, just how meaningless is the UK Government's claims for doubling a budget for a service in England which is in an even worse state than Scotland's better resourced but struggling system?

The good news, in someways, for the solicitor, my sister and myself is the latest hospitalisation of my mother forced the case conference which has been avoided for the last four years. It is now agreed she is not safe to be returned home on her own. By Christmas our mother will be in a care home which specialises in dementia care, near my sister, which the trust fund to be set up on selling my mother's home and into which her pensions are to be paid, will cover her contribution to her care, with ease. In that my sister and I are lucky that our father left my mother well looked after financially when he died, other siblings - I realise - are not so fortunate.

As for my mother - I just have to deal with the reality the 'person' is no longer there in the most part, it sounds harsh but it is as if you are dealing with a 'look-a-like' who you know is not the real person. This does not make the experience any less painful at times but without this rationalisation, I could not handle what has happened.

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