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His own domain?

He’s coming home. Eventually.

The plan is to discharge My Loved One to me now that he’s “stable” and we have, according to the consultant, to “accept this as the new baseline”. More on NHS-speak in a minute.

He will sleep downstairs and be serviced by a pair of carers four times a day. They will attend to his “personal care” (thank goodness – less shit for me to deal with. Literally) and hoist him, using a bulky piece of kit which will live with us, into his wheelchair for part of the day. Then I/we shall be able to wheel him round the ground floor to the TV in the sitting room, the dining room to sit at table and maybe into the garden. It’s not much in terms of life quality but perhaps a little better than lying in a hospital ward. And definitely better than any care home.

The $64,000 question – and I do so hope that’s not literal too – is who is going to pay for the very high levels of home care he needs? Arguably this should come under the NHS-funded Continuing Health Care (CHC) scheme which is based on medical need. That, however, for obvious reasons. is very hard to get and something of a post code lottery. At present forms are being filled in and signed by all the professionals at the hospital ready to be sent to Lewisham Health and Social Care. LHSC will, if they are prepared to consider the case,  and even that’s not certain, then set up an assessment procedure of their own before finally making a decision. Then they have to find an agency with the capacity to provide the right level of care. If we “pass” as it were, then it will be fully funded but –  well, there are lots of “buts.”

And none of that is going to happen in five minutes, is it? Moreover, although no one has said so, I reckon it’s also all bound to take longer at this time of year because key people will be away and offices will be working with reduced staffing. I have no idea what happens next if the application is unsuccessful because the equivalent of eight carer visits today is going to cost a fortune if I have to pay for it, especially as, either way, I shall have to supplement it with the carer/man-sitters I had before to cover the time I’m out working.

Meanwhile MLO lies, tranquilly and reasonably comfortably, in his hospital ward where staff now greet me like an old friend. They’ve taken to reading these blogs and some of my other stuff. It begins to feel like an extension of family. I shall almost miss it, and them, when he comes home.

I continue to marvel at the professional competence and human, humane kindness of every single NHS employee I’ve met at Lewisham Hospital. I just wish Jacob Rees-Mogg could spare half a day to sort out the NHS style guide because it seems to have developed a laughably impenetrable, otiose sociolect.

MLO has to be graded in twelve “domains” in relation to the CHC application. “What?” I said, amazed, to the discharge co-ordinator and I hope it didn’t sound rude. What they mean, I eventually realised, is that they have to report on things such as mobility, cognition, speech and feeding. There are twelve of these. Now, I haven’t told anyone at the hospital that I taught English for 36 years, have written dozens of English text books and have worked with words all my life.  “Domain” comes, of course, from the Latin word domus, house (hence domestic, domiciliary) These days it also means a virtual space which houses your website but how can it possibly mean a medical assessment category? Shade of Lewis Carroll’s Humpty Dumpty who opined that words mean what you want them to mean? What’s wrong with a word such as “area”, or “section”?  Why not say that patients are assessed under twelve headings …?

If he gets enough marks (and yes, that’s how it works – on a numerical points system) the application might “trigger”. By then I was trying not to say “what?” too often. It means that LHSC are willing to take it to the next stage but one really shouldn’t need a translation.

I also have a problem with the ever cheerful obfuscation, upbeat language and the way NHS staff are trained/programmed never to say anything negative. Witness that carefully, well rehearsed phrase the consultant used about the “new baseline”.  MLO is a very sick man. He cannot swallow. He has lost masses of weight. He’s unable to stand up or walk and he often doesn’t “speak” to me for the whole time I’m there. He’s gradually getting worse although they’ve rehydrated him and sorted his sodium levels. It is obvious to me (and presumably to them) how this is going to end. It’s just a question of how long it will take and making the path as smooth and comfortable as possible from here to there.

Yet I often arrive to find the staff hopping up and down with excitement because MLO has muttered two or three coherent words or smiled.  They’re lovely people and I know they care, really care. They are trying to cheer me up although I never go in looking miserable.  But they and I are not being totally honest with each other. And I sense that if I try to call a spade a spade in my usual plain, blunt way then it makes them feel uncomfortable. Interestingly, in years gone by I suspect it would have been the other way round.

Today I was told gleefully before I’d even reached the bedside: “He ate half his porridge this morning and most of a cup of tea! And of course he really loves his protein booster drinks! He had almost a whole banana one earlier.” Anyone who knows MLO and his – quite fussy –  food predilections will know just how hilarious that is. “Oh good!” I said, playing it their way and trying to keep a straight face.  Well done Lewisham Hospital staff, though, for trying so hard and for, unintentionally, making me smile.

Shelling peas with GD2 on a family holiday to County Durham in 2007

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Susan Elkin
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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