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Just heed our needs, please

Some organisations clearly don’t understand dementia. They are so bound up in their own red tape, procedures, rules and lording it over their customers that they have completely forgotten (if they ever knew) what life with Ms Alzheimer’s forever at your shoulder is actually like.

But first the positive. Most people and organisations are, thank goodness, wonderfully empathetic and helpful. Take the staff at Pret a Manger in St Martin’s Lane last week who were brilliant when MLO needed the loo but both the gents and the disabled facility were out of action. An absolutely splendid male Pret employee helped MLO all the way down the steep stairs and temporarily closed the ladies so that he could access it – and then fetched me when there was a problem. Or what about Thomas Sultana of All Gleaming Clean (who has done jobs for me before)?  He recently came to clean our ailing, much scrubbed landing carpet and said without a fuss “You need Scotchgard. I’ll come back and do it next week.” Then there was an extraordinarily kind young woman in the ladies’ loo queue at Arts Theatre where MLO and I saw Six last week. She could see that I couldn’t make him understand where to wait for me so she said “I’ll stay with him. You negotiate your way to the front of the queue and I’ll go when you get back.” And, for that matter, let’s hear it for the NHS. Apart from its absurd, antediluviaun, clung-to appointment/referral system the service we’re had since MLO’s diagnosis has been excellent.

Sadly, the fact that so many people so willingly go the extra mile makes the exceptions stand out even more woefully. I’ve decided they deserve to be named and shamed so here goes.

HSBC needs to learn how Lasting Power of Attorney works. I went to a great deal of trouble, carefully following Office of the  Public Guardian’s  quite complex instructions and  safeguarding rules to get all the right documentation including certified copies of the LPA document which are validated (with a special Braille-like watermark) by OPG. When I took one of these to HSBC they said they couldn’t accept a copy.  They had to have the original – which is utter nonsense. They also made MLO sign a lot of papers which defeats the object of LPA.  The document I had in my hand supersedes the need for all that. The woman we saw (twice as she insisted I go back with the original LPA document) was very pleasant and of course it isn’t her fault that HSBC, in arrogant ignorance, has imposed this way of working on its staff.

And I’m furious with Thames Water who write to me regularly because they want me to have one of their tiresome smart meters. I have resisted that and shall continue to do so. A recent letter commented that our water consumption is higher than average for two people. Well of course it bloody well is. One of us is sick. He needs far more showers (three so far on the day of writing – I’ll leave the details to your imagination)  than the rest of us and he generates a great deal of laundry. Whoever manages, or mismanages, the sending out of irritating, insulting even, letters like that ought to be sent on an awareness training course immediately.

I’m not pleased with the National Trust either. I phoned them to renew our joint membership – or, to put that another way, to make a donation of £120. Despite my saying that he has Alzheimer’s I was told that I had to bring MLO to the phone to authorise the renewal unless I paid from a joint account. They wouldn’t take the payment from my personal one. In exasperation I paid from a joint account in the end although it wasn’t my preferred option. I complained about this on Twitter which eventually led to an email from an apparently helpful NT person saying that she would make me the “lead member” instead of him which would solve the problem. Then the membership cards arrived – still addressed to him and with an asterisk against his name. So I shall have the same problem next year. Or maybe I won’t bother. Their loss.

Then there’s Lewisham Borough Council. I applied for a Blue Badge for disability parking and enclosed the support letter from our GP. But no, that’s not enough for LBC and he was summoned for a physical assessment by their physiotherapist. She must have endorsed our application because the badge was granted. LBC, however, insists that it is collected in person by the disabled person him or herself and the office is open only for a couple of hours a week. Not exactly helpful for people who are ill, disabled or both.  Eventually I got him there to collect it and the atmosphere was frostily hostile. “Please be aware” the LBC jobsworth said to me coldly “that if this badge is misused or displayed when the named person is not present there’s fine of £1000.” Well, actually I knew that because I had read all the small print when I filled in the application form. It’s all over the paper work which comes with the badge too and – do you know what? –  I can read quite well.  And for the record I wouldn’t dream of abusing a disability parking badge anyway. If I’m on my own I’m the sort of person who deliberately parks on the far side of a car park to get some steps in. In short, I really could do without being spoken to so rudely.

There’s far too much of this sort of thoughtlessness about. We hear a lot about dementia awareness these days and it’s good to see “Dementia friendly” notices and badges becoming commonplace. But until every single organisation gets the message there’s still a lot of work to be done.


* I’ve started a fundraiser for Alzheimer’s Society to mark our Golden Wedding at the end of March. If anyone wants to contribute here’s the link:



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Susan Elkin Susan Elkin is an education journalist, author and former secondary teacher of English. She was Education and Training Editor at The Stage from 2005 - 2016
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