Thursday, 31 December 2015

The wedge's end

Today I had the last appointment of the year with a nice nurse at our GP practice - and now I can hear! I've spent the festive season in a cloud of unhearing because of wax in my right ear. It's been a good experience, in a way, in increasing my empathy with the many who are "hard of hearing". It's extraordinary how stereophonic hearing enables one to pick out conversation against background chatter. It was hard for our guests, however, as Jane tells me my speech was more garbled than normal! (Correction: it was affected.)

So I'm very grateful to Holly and my practice who still provide this service. It's not complicated of course. Just a matter of lubricating the lughole with olive oil for a week and then a visit to the professional to flush it out in five minutes. All free on the NHS. Apparently, however, in many places this simple procedure is not funded anymore. I'm told that to get your ears syringed in Oxford would cost you £70-80 - unless of course you go to A&E and have three-month wait.... And what about that other common condition, varicose veins? Oh no, you can't get them dealt with on the NHS anymore. Wait until they're open and weeping, and then we'll do them. Otherwise go private and pay £1000.

So much for the £ billions for the NHS the government trumpets so loudly! (By the way, have you noticed that their stock response to any awkward question is not to answer it but to spout some large monetary figure which is meant to impress us? And naturally it sounds impressive to us ordinary tax-paying mortals, not being among the 1,826 billionaires in the world [i.e. with wealth of over $1000 million].)

So much for the founding principle of giving treatment free at the point of use! Yes, I know it's already been eroded at the edges, with prescription charges, dental charges, road accident charges and so on. And we already see the negative effects, with people self-medicating and neglecting their dental care until it's too late. But it is clear that, whether by intention or not, the effect of government policies is to shrink further free NHS treatment.

Which leaves one perplexing question to answer. What is happening to the £ billions allegedly being poured into our National Health Service? Is it being spent on hugely expensive experimental operations, or drug regimes with hugely costly pharmaceuticals? Or on paying the interest on the legacy of foolish public/private partnership initiatives? Or on administrators called in to sort out yet more doctrinaire reorganisation? Or prodigally buying in agency staff because we don't pay those we have the wage they deserve? Or is it simply because cantankerous old crocks like me are surviving too long and costing too much?
Thank you from the choir
One encouraging piece of news on Christmas Eve concerned the number one selling song in the Christmas charts. Here's what two of the Greenwich and Lewisham NHS choir had to say about the news that they had topped the charts; they're a physio and a doctor: Thank you from the choir. I think they're right, that their popularity reflected how much the NHS and NHS staff are appreciated and loved. The NHS is one of the best things about this country.

The NHS Choir sings "A Bridge over you"
And here's the song itself - which even cantankerous old crocks can enjoy: The NHS Choir sings "A Bridge over you" The choir's aim was to support the hard work done by doctors, nurses, midwives and many others in the NHS, with proceeds set to be donated to a selection of charities including Carers UK and mental health charity Mind. 

At the end of 2015, I'm going to say a huge thank you to everyone in the NHS. I know you're in it for the last of those three initials - and you ought to know that 99.9% of us appreciate the long hours you work and the awesome skill and care you show us. 

Finally, looking forward to 2016, I hope and trust that the wedge will not be pushed in any further, and that the government will give you the recognition and reward you totally deserve. Happy New Year.

Sunday, 6 December 2015

1st National PLS Study Day

 Photo: Tripadvisor
There are a handful of us in Oxfordshire who have Primary Lateral Sclerosis, the slowest and rarest type of MND, and, I suppose, there's an equally sparse distribution nationwide. In fact its pathology, the way it develops, is so unusual that the experts aren’t agreed on whether it is truly a type of MND or an entirely separate condition. Anyway, that means that it is a Cinderella of MND research. In Oxford we are lucky to have a concentration of MND expertise, that PLS is not neglected, and is a hub for understanding the condition. I believe the idea of PLS Study Day originated with Professor Martin Turner; it was certainly organised by the Oxford MND Centre.

So on Friday 23rd October about 120 of us – professionals, researchers, carers and people with PLS – gathered at the Oxford Spires Four Pillars Hotel on the Abingdon Road, to hear mercifully short presentations from our home team and from some “away” experts. “Mercifully” – not because they were boring, far from it, but because my attention span is limited. We heard about the characteristics of PLS – that was reassuring as I learned I wasn’t such a freak after all, but rather my symptoms and the way they progressed were pretty characteristic; we heard about what MRI and MEG scanning showed up, and a bit about genetics. What was most obvious was that a lot of very sharp minds were focused on the condition.

After a rather good lunch and the keynote lecture given by Dr Mary-Kay Floeter, the world’s leading specialist in PLS, based in Maryland, USA, which was brilliant, the focus switched from research to management, and again the home team led in this. It was informative, practical and helpful. All was well until Rachael Marsden, the Centre Coordinator, talked about a new smart phone app called Sex Diary, of which she showed a discreetly blank screen. As is the way with PLS, the collective risible nerve was tickled and only with difficulty pacified. Both the morning and afternoon sessions ended with patients’ questions answered by a panel of the experts.
It was an exceedingly good day, not least because of the opportunity to meet many others with the same condition with similar but different stories to tell. As we all know it helps to know that you’re not alone; and it helped to have explained what’s happening inside us. It was also brilliant to discover how many people are interested enough to devote their lives to studying the disease and to caring for us.

Indoor wheelies

I have been reminded indirectly by a lovely friend over the pond that I've not posted much about what I'm up to. So here first is something about my smart super wheelchair.

You may remember that before the summer at the MND Clinic I was enquiring about hoists in cars and the fab Jenny Rolfe exceeding my hopes. I don’t want to bore you with a long story, including my miscalculations.

With the help of our local MNDA, I eventually chose an Invacare TDX Neuro Chair, with the central drive wheels, for ease of manoeuvring round the tight corners in our house, and also with a riser. It’s actually not so good for reversing into my lift (it does wheel-spins - not good for the carpet!), but over all it’s a nifty machine, and the grandchildren enjoyed going up in the world. And it is a surprisingly useful facility, as I found on Friday 23rd October at the excellent PLS study day in Oxford (see next post).

Then it’s been a matter of choosing the car and the hoist. We’ve long liked Skodas and the Yeti looked as though its boot opening was high enough to take the wheelchair with its back tipped down. We supplied all the dimensions to the dealer and the hoist fitter who breezily confirmed that it would be fine. The full weight of the chair was 148 kg in all; the BrigAyd hoist was said to be man enough for 150 kg.  So all looked good. 

Well, it was – to a degree. When we got to the dealer’s to pick up the car complete with hoist, the fitter asked us how heavy the wheelchair was and he sucked his teeth and said, “You really need a 200 kg hoist. This is very slow.” Actually, to get the chair in you have to remove the footplates, the armrests and the headrest (which I guess come to about 15 kg), as only without them can you get it in – so it’s quite an operation both before loading and after unloading. That means it would be quite unsuitable if you’re on your own. I suspect another chair might be more streamlined and less complicated for embarking and disembarking.

The Yeti itself is a lovely vehicle. Ours is petrol; so no risk of the VW diesel wheeze! We’re a bit surprised how much room the hoist and wheelchair take up in the capacious boot. I suppose no solution is perfect. However we’ve already enjoyed the increased freedom that the imperfect has provided! So, all in all, we’re pleased and look forward to its coming into its own in the spring.

Tuesday, 1 December 2015

Targeting nonsense

In July Breeze Radio reported that our local South Central Ambulance Service was spending up to 10 hours a week appealing unnecessary speeding fines, because the speed cameras failed to pick up blue lights. "The ambulance service which operates across Hampshire and Berkshire received 3,306 speeding tickets in 2013 to 14. The fines given to South Central Ambulance Service amounted to £330,600."
(Photo: BBC)
Then last week came this extraordinary news, that it could now face a £1M fine for failing to meet targets. How nonsensical! This service which covers four rural counties has its funding cut and then is threatened with having a chunk of that precious funding removed. No one seriously doubts, surely, that the paramedics do their level best to reach patients as fast as possible - even exceeding speed limits, blue lights flashing? No one who has been on the receiving end of their care. Of course, everyone is aware of local stations having been closed in the pursuit of "rationalisation", as the whole trust was an amalgamation of four services ten years ago. 

The BBC reported:

'South Central Ambulance Service (SCAS) could face a £1m fine over its poor performance, a trust boss has said. The service has been given a penalty notice for not meeting the eight minute response target for life-threatening emergencies. Sue Byrne, SCAS chief operating officer, said: "We work hard not to be in this situation. It isn't acceptable when we don't reach patients in time." It is now working to an action plan to improve to avoid the fine being levied. Ms Byrne said: "The amount is down to the commissioners, but it could be £1m. It will have to be paid if we don't improve. "It's a very challenging environment." Low staffing issues have also been highlighted as a concern to be addressed by the service. Its ambulances would need to reach at least 75% of life-threatening emergency calls in eight minutes by the end of the year for the penalty to be lifted. The service said it was currently reaching 72% within the time target. SCAS serves Berkshire, Buckinghamshire, Hampshire and Oxfordshire.'

For me it's a vivid illustration of the stupidity of the culture of targets and fines. It creates an atmosphere of fear and undermines trust which should be at the heart of health care. Let the professionals do what they want and what they're trained to do. Trust them.