7th July 2015

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Marching against it
News and Comment from Roy Lilley

The government said dementia training had been given to 600,000 NHS and social care staff... well, that's what the BBC reported. (based on this report)


The BBC also told us; "...Doctors have raised fresh concerns about the level of support people with dementia and their carers get from the NHS and social services in the UK."


And, just for good measure; "...the Royal College of GPs says until the situation improves, doctors will have to weigh up whether there is any advantage in early diagnosis."


Oh and let's not forget the political wing of the DH, the press office, added; "We are already expanding access to named clinicians and dementia advisers to help patients and their families, and giving the option of personal budgets - and we want to see these things being offered across the NHS."


Let's have a think about it.


Giving dementia training to 600k people just means a lot more people working in the NHS will understand dementia. It does not mean they will be on hand, at three in the morning when your dementia partner gets out of bed for the fifth time. It does not mean they will be around to help put their trousers back on... for the tenth time.


They won't be there when the tears come, the tantrums, the frustration. Not knowing, not recognising, forgetting and disremembering. The exhaustion and the last straw.


They will not be there when the outstretched hand of love is pulled by its finger tips to almost unbearable endurance.

Doctors have raised concerns about the level of support relatives and carers are getting. Oh, really! Where have they been? Just where have all these doctors been?

Try being a full time carer.  Try managing on a pension and a carer's allowance. Try being totally overwhelmed by a partner who lives in an 70 year-old's body and is completely unable to recognise the person they married 40 years ago.  Where have the been?


Doctors going off the idea of early diagnosis? Well, well. Tell that to a family who want to hope for the best but prepare for the worst; put their affairs in good order and make the most of what is left.


And the apparatchiks in the DH press office? Personal budgets... tell that to an elderly couple struggling to get though the basics of today and tomorrow.


How they will look forward to forms, applications, visits, appraisals, assessments, accounting and the inevitable excesses of VAT and health and safety. Let's hope they have a nearby son or daughter who is an accountant, project planner and a benefits entitlement expert.


Why don't we just admit it; we are totally unprepared, unfinanced, untrained and unready for what is knocking on the door.


The front door of the NHS is prepared for episodes of illness; get better or die. Neither the NHS, social services nor care homes are anywhere near ready to care for people who will have twenty years of depreciating health and awareness and totally unprepared to support the friends and families who will be on their knees as things get, inevitably, worse.


Living well with dementia might be a fashionable idea for the glitterati and the middle classes. Living with someone with dementia is not living. It is existing on the edge.


Families don't live with dementia. They get-by with dementia. Dementia is not glamorous, it is a grinding curse that would reduce St Dymphna to tears and St Benedict to doubt his holly orders.  They should all be given a copy of June Andrew's book, on prescription.


Carers need training, time off, respite, counselling. They need tax breaks for caring. Their homes need aids and adaptations, cutting edge IT, alarms and monitoring. They need catering support, laundry and shopping.


They don't need ten people a day turning up. How many more knocks on the door...  rings of the bell?


They need one person, a real dementia friend, trained with all the skills of a councillor, district nurse, a prescriber, home visitor, social services, benefits agency and not afraid to help with a bit of cleaning and shopping. Navigators, brokers and chaperones. A friend in the care business. It can be done. 


Pretending to be ready, pretending we are prepared, pretending we know what's-what, pretending we are resourced. In reality we are playing fantasy NHS.


There are 850,000 people with dementia in the UK and there will be more. Many more.


We are dancing with dementia when we should be marching against it.


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