I started drafting this on the 1814 train out of Kings Cross, heading home and hardly able to stay awake after a ‘proper early’ start, and feeling on the whole pretty pleased with how the day went. The second summit of the Wheelchair Services Review was long in the gestation, and involved an amazing amount of effort on the part of many good people (doubtless, from the outside, it looks like too many people). Coming back to it on Friday afternoon, waiting (nearly two hours late) for my Oncology appointment, it turns out my view is a bit more jaundiced. Not with the people, not with the effort (already) expended, and not with the focus and sheer intent in the room. Just with the slowness, the Titanic-esque process.

Oh, for a benign dictatorship.

So, the gist?

Here’s are some quotes (in bold) from ‘Summit II’, and my personal response to some of them. These are the things that stuck in my head and that have been going round ever since. I know there’s lots of detailed work going on in the background. This is just my response to stuff on Thursday. Some of it will sound sour, and not everyone will approve. But that’s not the point, eh?

• You wouldn’t be allowed to prescribe the wrong drug. So why is acceptable to provide the wrong chair? – Presumably it’d be at least immoral, and possibly illegal, elsewhere in the NHS?
• I told the story in February [at the first Summit] of how [my son] can’t get appropriate seating for his complex postural needs. He still hasn’t got it. – This wasn’t surprising to those familiar with the service, but nevertheless remains shocking.
• ‘Some’ isn’t a number. ‘Soon’ isn’t a time. – Very true. The issue of specifics of came up a lot, and I’m really not convinced we made enough progress during the day. We only got to real objectives in the last session, and it felt hurried and a bit forced.
• There is a lot of energy in the room. – This drives me bonkers, every time. Energy is lovely, but it’s fluffy stuff and let’s not mistake it for an objective. Or an achievement in itself.
• My life as a parent is unbearable …. I have had to develop specialist-level expertise in my son’s condition, in welfare, in social care, in education, in housing and in law. – Again, shocking to hear from an exhausted parent/carer, but hardly surprising. You don’t get automatic ‘coping’ powers.
  
• Get celebrities to spend a day in a wheelchair. – NO! Try believing what you hear from, you know, users! Where’s the respect? The understanding of our expertise?
• Actually, the process of assessing and measuring someone for a chair really isn’t all that difficult or time-consuming. It’s the processes behind that take the time. – So how do we simplify the system?
  
• Nothing has ever been changed just by forcing people to do things. – You think? This is errant nonsense, with thousands of examples, good and bad, from seatbelt legislation to the Khmer Rouge. Sometimes, don’t you just hanker for a little Command and Control? Or a gun?
• Educate the public about what goes on in Wheelchair Services. – The public doesn’t give a toss about what goes on in Wheelchair Services. The users barely give a toss. Let’s not prioritise this idea. Please, let’s not fund it.
• We don’t want ‘measurably better service’; we want better lives. – Like the meerkat says.
• I’m so excited about … [fill the gap with e.g. (a) ‘the ability of CCGs to share best practice on a regional basis’, or (b) ‘motivating leaders going forward’]. – Again, no. This isn’t a school project, and it isn’t a birthday party. Our conditions aren’t ‘fascinating’; we are bored to death by them. This is about people’s actual lives. Just concentrate.
• I was asked, when reporting a fault, ‘Are you SURE it’s the back rear wheel? The big one?’ – Really. A grown man with a life-time’s experience of wheelchair use, and perfectly good communication skills, was asked whether he could differentiate the big one from the little one.
• First, can you please explain to us what it is that you DO? – This was the gist of every ‘request’ that arrived at the Service Improvers’ table, from clinicians, manufacturers, providers, commissioners, etc, as part of the final exercise. The ‘Improvers’ I know are universally good people, talented, and seriously dedicated to the NHS. Heartbreaking, then, that no-one else in the NHS seemed to know what the Service Improvement folk do. Hmm. Tricky, that.
• There are children waiting three years for motorised chairs. – Sorry, I don’t know where, and I can’t source that. But let’s assume it’s true, and let’s bear in mind that the child will be hurtling towards adolescence by the time its too-small chair turns up.
• Measurement: We love it. – And we do get it. It’s important. But let’s not wait for all of it to come in before starting on something concrete.
• There’s a ‘tyranny of evidence’. – (I have to own that I said this. Ha ha, it’s my blog.) Sometimes it seems that it’s easier to do another review, to collect more evidence, than actually implement something real and difficult. I hold that there are some things we all just know: kids wait too long for chairs; and the wrong chairs cause harm.

Where does this leave us?

You have to be impressed that so many people are now involved in this, and that there is a huge collective will to improve things. And we get that the NHS is big… it’s hard to shift… everything depends on commitment rather than ‘coercion’… culture change… blah blah. But, jeeeez, it’s frustrating. The last session of the day – with groups of stakeholders trading ‘requests’ – felt as though it should have happened much, much earlier. It felt like we’d finally started talking something-like-specifics, but way too late in the day (I was part of the planning group, so I put my hand up for this). Suddenly it’s: ‘Only ten minutes to go’, with the second of five items barely addressed and everyone panicking. This is no way to set objectives or make policy.

Thursday felt like ‘a good start’. It’ll do, if we’ve really, finally got this sodding great ball rolling. But, to me at least, the end of the day felt like the end of too many other days. With energy, commitment and enthusiasm, but still nothing more concrete than good intent on the table. Nine months in, we are nowhere near specifics. Lots of ‘improving’ and ‘communicating’ and ‘facilitating’. But when will the effort produce a better, more timely wheelchair?

When can I give concrete answers to my basketball team, about what will change, and when?

Fiona Carey, November 2014