Care - what's it worth?

Yesterday I happened to hear an interview conducted by Anna Magnusson on BBC Radio 4's Sunday Worship. It gave me an insight to the vocation of nursing:

 

Nursingtimes.nets

"One of my nieces is a newly-qualified Staff Nurse. Ellie’s 23, and works in a vast London hospital. She’s in the kind of job which gives her insight and maturity beyond her years. Every day, she looks after strangers. We sat down together one afternoon to talk about caring, and giving back what we receive. And what the story of Jesus washing the disciples’ feet means to her:

It’s the son of God; it is the most holy person saying, 'I don’t care if you’re homeless, I don’t care if you’re the scum of the earth, I am here to serve you.'  It’s just throwing every ideal we have out the window that you have to be the most rich, you have to be clean, you have to be good at your job – as long as you are a person, that’s what makes you valuable, and I am looking past anything other than you being a human – you are a human so I am going to serve you.

As a nurse you do have to do that, you have to say, I don’t care if you’re a drug-dealer, I don’t care if you’re a criminal, I don’t care if you’re a nun – I am going to treat you exactly the same because I have a duty to serve every person that comes through this door.

Tell me a bit about feet, though – what kind of feet do you encounter in your work?

Ooh … They come in all shapes and sizes, all lengths of toenails and smelliness and grottiness.  We’ve got patients who come off the streets, who are homeless.  And sometimes it can be quite horrible! 

But clearly you can’t allow yourself to be squeamish because that’s your job; it involves a lot of putting your hands on people, on giving intimate help?

Yeh, and I think over the years you do, you become a bit more immune to it.

I remember one of my patients, he had come off the street and he had this massive beard which he said he never used to have, and he was quite stinky, so I scrubbed him.  And you could just see the dirt all falling off.  And then goes, ‘Oh, I really want to have a shave!’.  So I chopped off all of his beard with some scissors and then I got the shaver out.  And I shaved his whole beard.  And he just couldn’t thank me enough, it was great.  And it was such a lovely bonding time between us, because I asked him about his life, I was able to find out what he was like when he was younger, and when he left he just couldn’t stop shaking my hand.  Because it’s one small thing that makes such a big difference, and I think everyone would want, I think people would want to do that, to give a tiny bit to someone and for them to receive so much from it...."

She added another insight into the folly of our policy of squeezing more and more out of the resource which we deliberately limit financially. We can't expect the time and level of compassion we'd like, when we understaff the NHS because we underfund. Time is money - and money provides time. 

"One of the main reasons I love nursing, and especially when I was a student – I was able to give more of myself to them because I wasn’t pressured by being a staff nurse; I had that little bit of extra time take the effort to make sure that it’s done in the most lovely way, to say, 'No, don’t rush this, this is someone, this is your grandma, this is your mum, take the time to make this as nice as it can be – even if it’s just 10 minutes, giving someone a little bed-bath in their hospital bed.' And then very quickly you’re getting a picture of their life.  So I never view them really as strangers."

In the same programme Anna Magnusson related,

"I’ve a friend in London who used to work for a home-care service.  

The allocated time for each visit was 15 minutes, and it was never enough.  She couldn’t allow herself to leave someone soiled or half-dressed, so she would over-run. Then she had to rush off to the next person, always behind schedule, always distressed over what she could not do to help. 

She was paid peanuts and, in the end, she couldn’t continue and care for her own family as well.

She trained as a bus driver instead, and was paid a decent wage."  

We know that's true - and yet it seems that as a society we are not willing to pay the price of providing care to those in need at their point of need. And then we, led by the media, have the gall to complain at waiting times or cursory treatment. And politicians find it convenient to collude in the blame game - to deflect our attention away from the fact that they don't have the courage to face themselves and us with the truth that care costs. Care is worth paying for. The NHS is worth paying for. And that means nurses and those in the care professions deserve rewarding.

New year laughter and tears

For young people September marked the start of a new academic year, even career. Some universities even begin their "Michaelmas Term" on 9th October, on the presumption, I assume, that their students work much harder or are so much brighter than others that they need far less time to study. Anyway, best wishes to all students and their teachers launched into the most depressing of terms being the longest (16 weeks) term and the increasingly dark days of the year. However for the rest of us also the regular round grinds back into gear, including local MND Association events.

For us, it began a week ago with a meeting at the Holiday Inn with my physiotherapist, Lesley, talking about her work. I know I'm biased, but she was excellent. Clear, comprehensible, and not condescending. One thing she flagged up in response to a question was the possible dire consequence of commissioning. At the moment we have a small expert, if very hard-pressed, team of neuro physios. With competitive tendering there's a danger of going for the cheapest option, which won't be the experienced or the specialist one. If we lost Lesley and her team, it would be a tragedy for everyone with neuro conditions (like MS, Parkinsons, MND) in our area.


Then last night we drove to the Roses' Theatre in Tewkesbury - a long way, but it was for a reason. We were going to hear Pam Ayres giving a performance in aid of the MNDA. We'd had contact because of our shared connection with Stanford in the Vale. She was brought up there and many of her family still live there. As vicar there, I had met her on one or two family occasions. She's genuinely as nice as she seems. She's written a rather good memoir of her early life in the village and then in the WRAF and local firms until her career as a poet and comic raconteur took off after appearing on Opportunity Knocks, in which she was the people's choice. It's called The Necessary Aptitude - which she was repeatedly informed she lacked, up to the point that she uncovered her metier.

Photo ©Nicky Sadler

I don't think she would reckon herself one of Britain's great poets, but I think you could rate her as the ordinary people's poet. She is a winsome stand-up comic, interspersing her apparent stream-of-consciousness performance with poems and self-aware skill. She has great rapport with her audience. Her performance of Shakespeare was hilarious, and her account of her moment of shame in Singapore (you'll have to read the book!) was very moving. If I had to choose the comic highlights for me they'd probably be her new poetic form, poetry tweets, and her attempts at wearing contact lenses.

At the end, Pam gave a short clear explanation of MND and the purpose of the association, and encouraged everyone to sign the MND Charter *. She's given her fee all to the MNDA, which is a considerable donation. I'm not alone in being very grateful. Moreover I need to acknowledge that although the Oxfordshire branch made the initial contact, all the hard work for the evening was done by the Gloucestershire branch, some of whom you can see below.

So we're back in full swing - Next Saturday Jane will be pushing me round Blenheim Palace grounds on our annual sponsored walk "to dfeet MND" (You can find out about coming or sponsoring here.) We hope for the same beautiful weather we had last year. 

* The MND Charter is basically a plea to have even care of MND patients nationwide. Here in Oxfordshire the care and support is brilliant, partly thanks to the dedicated MND Centre at the John Radcliffe, but that's certainly not the case all over the country. 

For example, Pauline, a friend of mine with MND, has just put this on her Facebook page:

You couldn't make it up ......
Struggling with my mobility with regards to getting to the toilet and in and out of bed I contacted the OTs yet again for some assistance. Almost 2 years ago my then OT put forward to 'the panel' the possibility of me having a standing hoist. This was denied with no proper explanation or assessment despite my continued protestations. Now I am more in need of it than ever though still capable of standing using a 4 wheel walker for 1-2 minutes (performed for toileting, getting in and out of bed and on and off shower chair. The OT came and we discussed hoists, again! It was decided that due to my husband's age and frailty he shouldn't use a full hoist on his own but neither could I (still) have a standing hoist because (this is a new argument because it certainly wasn't the case 2 years ago) I can't sit myself up in bed! (WTF?). That's okay if I'm being put to bed by carers (this only happens 3x a week (at 8.30pm and I hate it)) but what about going to the toilet I asked. THIS IS WHAT YOU COULDN'T MAKE UP....A carer could come at a set time each day, she said and put you on the toilet! OMG, not only am I being 'put to bed' like a naughty girl, now, they're expecting me to 'poo to order'! When I started to cry both OT and physiotherapist just sat there whilst my aged mother tottered over to comfort me. When they qualify these people must enter a vacuum wherein they have compassion and empathy (oh yes and common sense) extracted. I await the outcome with bated breath....

I'm not greatly into the "rights'" culture, but I basically agree with the five aims of the Charter, which says:

1.People with MND have the right to an early diagnosis and information

2.People with MND have the right to access quality care and treatments

3.People with MND have the right to be treated as individuals and with dignity and respect

4.People with MND have the right to maximise their quality of life

5.Carers of people with MND have the right to be valued, respected, listened to and well-supported.

Obviously the more people who sign the charter the more weight it will carry with policy makers and purse-string holders. You can access it here. At the moment it's not that straightforward. Hopefully the MNDA will soon make it more accessible. (MND Charter on-line)

 

Sunny days in Devon

I have to apologise, not least to the friend who wondered whether my blogging silence meant something was wrong. I'm sorry to say it means approximately the opposite - that I've been having rather a good time, partly because I've been in the book-writing "zone" and partly because we went away for a long sunny weekend to South Devon coming back a week ago.

We stayed in Newton Poppleford for two reasons: a) it's near Jane's revered and lovely parents, and b) it's where I found a promising disabled friendly bed and breakfast. Brookfields proved to be better than I'd dared hope. It's run by a couple, David and Rosemary, who'd previously owned a nursing home and therefore understood my needs well. Our bedroom had a wetroom en suite which, of course, is ideal. There was plenty of room both sides of the bed. And the breakfasts were amazing. David and Rosemary seek out the best from every source, working on the principle that they give their guests what they themselves would like. And they are excellent and generous cooks. When we eating out with Jane's parents at midday, we had the continental option - well, you can't do much with that, can you? It was fine, but not as extraordinarily yummy as the full English.

I suppose what was best about Brookfields was the hospitality. It isn't the hotel-type B&B; it's a home. Even Axy, the dog, is friendly and welcoming.

Friday was Sport Relief day. We'd decided to make use of our National Trust card and visit Killerton House, just on the other side of the M5. It's an impressive house, built originally as a stop-gap, for the Acland family. Happily they decided to stick with it rather than build a grandiose permanent house on top of the hill. It's grand enough as it is, with beautiful grounds (not that wheelchair friendly) and an accessible ground floor. Jane indulged one of my vices at lunchtime with a packet of quavers, which was kind of her.

About midday there was an influx, a torrent of primary school children, 200 of them in blue, yellow, green and red tops. They were, we realised, marking Sport Relief, competing in ages round different distances, including a course of up to a mile. It was beautiful sunny afternoon; parents and peers shouted encouragement. What better way to end the week - pupils and for teachers! And for us it proved diverting entertainment.

St Luke's, Newton Poppleford

Our Italian evening was, I'd say, average, although the service was excellent - as were the quite different services we attended on the Sunday. The first was in St Luke's, Newton Poppleford, which Rosemary took us to in the morning. A delightful friendly relaxed yet reverent Communion service. It reminded somewhat of Stanford, which is quite high praise! After a cream tea in the afternoon we headed off to see the sea and then to join our friends at Christ Church, Exmouth. Here we had excellent worship music, and a memorable sermon on Psalm 1 and pee charts! On the way back we sampled Krispies' award-winning fish and chips, which I have to say were just as good as their reputation. Back at the B&B we were plied with sloe gin and red wine - "and so to bed" after a great day.

Christ Church, Exmouth

Jane returning with the clotted golden treasure!

Before coming home on Monday, we had to pick up some clotted cream for a member of our family (and ourselves, to be fair) from what is agreed to be the best supplier in Sidmouth. We spent another couple of mellow hours with Jane's parents, this time in Sidmouth Garden Centre's remarkably good and reasonably priced restaurant. Our progress was almost brought to a halt by an accident blocking both directions of the A303. However instead of following the official diversion we successfully circumvented it and were home in time to feed the dog. Although physically taxing, as all changes from routine inevitably are, with a disabled body to look after, we both returned stimulated and ready to enjoy the week of unbroken sunshine which followed. Breaks are physically tiring and take a bit of recovery time, but mentally they are essential for riding the stresses of disability - which is the reason why funding which makes them possible must not be cut. The alternative, carers being unable to carry on, would cost the tax-payer much more, with two casualties to deal with. I await with some trepidation the government's proposals for creating a viable care system.

A new year

Before the media frenzy breaks tomorrow with the launch of the "eagerly awaited" - listen out for that phrase - it could be part of their press hype - report of the phoney Falconer "commission" (it's already been launched - or "advertorialised" as Peter Saunders pungently put it - in The Telegraph and The Observer), time for me to reflect in the lull.

With Jane's broken collar-bone I've entered the realm of employing a carer. Ralph comes in to give me my stretches, get me up, dressed and down to breakfast, leaving after I've been to the toilet. My usual chair's been replaced (again) with the riser-recliner so that Jane doesn't have to haul me on to my rollator. So most of the day is spent here, where I'm sitting, with necessary toilet breaks, of course, (sorry to mention it again), until Rachel gets me ready for and in to bed. It's the first time someone who's not family has had to deal with me like this, and I wondered whether I'd find it embarrassing or undignified as some people seem to. Or would I feel I was being "man-handled" like Tony Nicklinson? I have to report I felt none of those.

It seems to me it's largely a matter of attitude rather than reality. I'm not minimising the experience of dependency and diminishing powers. However we are simply mistaken to call it undignified. Actually, as Archbishop Cranmer says, there's Dignity in Living (as opposed to the mantra Dignity in dying).

On a lighter note, yesterday my three brothers and their wives came to lunch. We try to meet up once a year after Christmas - saves on postage for the presents! Because Jane couldn't drive, we changed our original West Country venue to here, with the others doing all the catering. It worked well - and we're still left with remnants of the meal.

My brothers and I still enjoy giving each other presents: I gave them a jolly little monkey that waddles along playing a pair of cymbals. (I can't work out whether he's like me or Lord Falconer. Like me he's wobbly on his feet; like the peer he looks good but does a lot of banging to little effect.)

One of them gave me a proxy goat, another a clock which has a different bird singing every hour (now banished to the conservatory), and the third "The Perfect Man", which has the following verses attached:

"They say good men are hard to find.
I know this to be true
But I hunted far and wide
And found one just for you!

He is no good at DIY,
He cannot fix the car;
But his socks are never smelly
And he doesn't stray too far.

He always listens patiently,
He won't pester you in bed
And if you get fed up with him -
You just bite off his head!"


It was, in case you'd not guessed, a packet of five of these cheery fellows. . . .

I wish you a cheerful new year.

Good morning!

When Jane pulled back the curtains this morning, I looked out on a clear blue sky and the houses over the road lit up by sunshine.

When I turned on the radio, there was an item about the report on end of life care provision by the CEO of Marie Curie Cancer Care, Thomas Hughes-Hallett. He was talking about it at 7.10, and then, an hour later, there was a discussion about it with Care Services Minister, Paul Burstow, and the palliative care consultant at St Thomas' and Guy's hospitals, Rob George, introduced by a clip of Tony Bonser, describing his son, Neil's death at his home, "He died peacefully, where he wanted to be" - thanks to a Macmillan nurse's intervention, asking the right question at the right time. It was a brilliant example of how dying can be managed well - so different from the many scare stories that are peddled too often. You can hear it half way down this article. The report seems to be saying that more widely available palliative care at home and in hospices would actually save on hospital budgets and therefore not cost the NHS more. Refreshingly, the minister welcomed the government-commissioned report without reservation; unsurprisingly he wouldn't be acting on it straightaway - examining implications, pilot projects etc. But it was good to hear something really positive about end of life care.

Perhaps the most encouraging point in the Today programme was the very end when John Humphrys said: "Just before we close, we've had a huge response to our item on palliative care, the care of people who are dying... very warm praise from an awful lot of listeners for Tony Bonser who spoke so passionately and with such dignity about the death of his own son, who was terrified of hospitals and did eventually, in fact, die at home. One email in particular caught our attention, Marian Nash whose father died just on Sunday. She arrived at the care home just as they were calling the ambulance, even though he would not have wanted to go to the hospital, and in the end she says, 'she fought her corner' and he died at home. She says he had a beautiful death surrounded by two of his children and with his favourite music playing in the background. 'I dread to think what his end would have been in hospital.' And that's what so many people have been saying. And every single email we've had,... from people who've had experience of hospices , says how wonderful they have been and how great care workers have been at home." Maybe the BBC is learning to give the silent majority its voice - or maybe the silent majority is finding its voice.

That wasn't all. The Chief Rabbi, Jonathan Sacks, a good argument for Judaism, was giving Thought for the Day. He was reflecting on the prevailing mood of pessimism and on actually how blessed we are. We may be preoccupied with cut-backs and pensions, but in a global and historical perspective (he mentioned his parents and grandparents who, I guess, were in mid 20th century Europe) "The lot has fallen to me in a pleasant place," he quoted from the Psalms, "I have a goodly heritage." Amen, that's true.

A couple of hours later I was reminded of the Burmese pro-democracy leader, Aung San Suu Kyi, who gave the first of this year's Reith lectures on Tuesday morning. What a brave woman! 21 years under house arrest, refusing to leave Burma for fear of not being let back in - even at the cost of seeing her two sons and not being able to see her dying husband. We take so much for granted, and we gripe about such insignificant things.