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…
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?
Oh dear, I really hadn’t expected to do research at the pointy end of 7DS, but an unscheduled trip to Addenbrooke’s in Cambridge on Saturday night provided that very valuable, ‘lived experience’ that you’d be happy for someone else to bring to the meeting.
Ambulanced in with severe upper abdominal pain, and with a long history of surgery for renal cancer (including a Whipple’s in early 2011), the prospects of discovering a) secondaries, b) bleeding and c) an adhesion-related obstruction, were daunting to say the least. A blue-light entrance on a Saturday evening, just a week into a massive and ambitious conversion to a total-hospital e-system, didn’t exactly fill us with dread. But you wouldn’t have hand-picked the timing.
So, with 48-hours as an in-patient, how did Addenbrooke’s stack up on these burning issues? Let’s look at EPIC, seven-day services, and patient-centredness.
EPIC
First, EPIC. Addenbrooke’s had switched, overnight, to a paperless electronic system almost exactly a week before. We were met at A&E by a nurse standing behind a tall, wheeled computer (I’ve just learnt that these are COWs, computers on wheels). She greeted my ambulance team calmly, and the other four that arrived within a minute. We were all logged in within five minutes, and most patients were dispatched to bays. Waiting for a while on a trolley, I watched as orange-armbanded floorwalkers and ‘super-users’ helped on the spot with small queries from staff as they logged histories and other info. Other glitches were logged (and apparently are addressed very quickly). All data from obs was bluetoothed via the handheld ‘Rover’ units into the system automatically. There honestly wasn’t a piece of paper in sight.
Once I was on the ‘majors’ assessment ward, throughout the night staff accessed blood results, histories and CT reports directly from the datapoint in my cubicle. And for the rest of my stay, I was impressed! Staff were still familiarising themselves with the system and, when asked about it, some staff rolled their eyes and cited ‘early days’, while others were emphatically positive that the system is already making a difference. Meds, test results, prescriptions, doctors’ notes – everything was to hand in a single place. Staff across the hospital can access records remotely. An insulin-pump educator who came up from the diabetes clinic on Monday had been keeping an eye on my blood glucose levels all day!
Verdict: a gob-smackingly ambitious project, well executed, and brilliantly project-managed. Steady and holding.
Seven-day services
You wouldn’t volunteer do go into A&E on a Saturday night. But Addenbrooke’s 7DS performance was pretty impressive. I was triaged, assessed by two different medics, and moved to ‘Area B’ in short order. The place was busy, but the atmosphere was calm and organised. At midnight I was sent down for a CT scan (more of this below), so no issue with diagnostics. At 3am I had a long-ish conversation with a doctor, and we concluded, amongst other things that I’d be admitted, and that they ‘get me somewhere more comfortable’ asap. I was moved to a ward at about 4.40am, and dealt with there by nursing staff who couldn’t have done more to allay my anxiety, or to make me more comfortable. Through the little that was left of Saturday night/Sunday morning they were very attentive with obs, particularly with blood-glucose monitoring.
Of course, we expect A&E to be fully girded and running. But still the level of staffing, the availability of tests, and the attentiveness of staff was impressive.
Sunday saw more diagnostics/tests, with an x-ray at tea-time (no tea for me, mind!). This time the results were s-l-o-w getting back, and it wasn’t until 9.30pm that word came that ‘the gastrografin had gone through’ and I could eat something. The ‘missing meals’ service produced a lasagne at about 10.15pm, which I sort of fell into. Hadn’t eaten since Saturday brekky. It went down a treat, and I thought that wasn’t bad for late on Sunday night.
Sunday was also impressive for the attention that nursing staff paid to my iatrogenic (T1-ish) diabetes. Hospitals generally don’t have a great history of dealing with diabetes in in-patients, particularly where the patient has been admitted for non-diabetes related reasons. I was sceptical about the staff’s ability to manage my diabetes, and actually handled my own insulin administration throughout my stay. But we did the BG testing between us, and at night they were brilliant, actually, and came every hour or two to check it.
Verdict: diagnostics, care, timeliness and staffing were pretty damned good.
Patient-centredness
On the way to my CT scan, just after midnight, I remembered that in just two weeks I was due for my regular, 6-monthly thorax-abdo-pelvis scan before seeing the Oncologist, and it occurred to me that it wouldn’t be sensible to have half my trunk scanned now, only to do it all again in two weeks (I’m running at 40+ CT scans, I think). So, slightly dubiously, I asked the reasonably-hard-pressed radiographer whether it would be possible to do that whole scan now, rather than do just part and have to repeat it in a couple of weeks. It threw him for all of five seconds, then he went off for a few minutes and returned with a ‘Yes, we can do that.’ It would have been a lot easier to point to the request, nod at the queue, claim he was following orders, and fob me off. But he appreciated my concern, and took the time to make this possible. Points.
At about 3am on Sunday morning, still in A&E, in discussion with the doctor after my CT result had come through, he talked about suspending my insulin pump and putting me on a ‘sliding-scale’ glucose drip to manage my BG levels while I was being ‘starved’ (to address what he’d conclude was an adhesion-related obstruction). I demurred: I’m very insulin-sensitive, and was worried about the check-and-correct approach that would be involved. As an ‘expert patient’, I know that I can manage my diabetes better than anyone else can so, unless I was going to descend into a state where that wasn’t possible, I wanted to hang on to my pump and controller. We talked for maybe 20 minutes about the options, and exactly how we’d manage them, and in the end agreed between us to go with me being pump-boss. I was hugely impressed by this attitude, and by the subsequent support I got from ward staff.
I knew that the recently-formed Diabetes Clinic’s Outreach Team would become aware of my being on the ward, and would probably get in touch (as well as monitor my BG remotely!) at some stage. I also knew that an on-call Diabetes consultant was about. It is a shame then that, with my BG dipping a bit through Sunday, my suggestion that we have a word with the consultant (a pump specialist, as it happens) was met with some reluctance by the nursing staff. In fact, the nurse went off ostensibly to speak to him, and looked embarassed later on when I asked about it, and said that she’d decided not to. She’s entitled to change her mind, of course, but I’m entitled, I think, to know that she has. I still think it was a wrong decision. This situation was exactly the sort of scenario for which he was present in the hospital.
Verdict: mostly, really very good. Impressive, actually. With just a little bit of work to do in parts.
Overall? I’m pretty damned grateful to have Addenbrooke’s not-quite round the corner. (Other hospitals are available.)
fionacarey2000 