A few examples of how disabled people are treated…in which I discuss a Surprisingly Unsympathetic Obstetrician, and Patient Transport coordinator and operatives.

I have to go to my local Teaching Hospitals Trust to receive physiotherapy from what is variously called “women’s health physio.” or “obstetric physio.” They work with women who are pregnant or who have had a baby in the past year. They’re lovely people, and everything they have done for me has been helpful- and they have managed to keep on the right side of assessing injury/ inflicting pain each time I have been in to see them. I Can’t sing their praises high enough.

However, there are lots of people who have been involved in my care and treatment who have been less than helpful. As I work in healthcare, I am always aware how easy it is to negatively alter someone’s experience of care, for example, through being busy and seeming inattentive (which I have been guilty of before, when under pressure with the dreaded paperwork, to my shame), or when we’re informed by management that what seems like a simple request is, in fact, impossible for us to facilitate (which drives me crazy). This is frustrating for service users. I understand that, because if I wasn’t empathetic, I would be in a different job. However, there is NO SUBSTITUTE FOR LIVED EXPERIENCE, and being on the other side of the arrangement gives me an interesting perspective on how difficulties with service provision can really bum out your average patient / service user. I use the term patient advisedly, because this is the primary quality you are expected to cultivate if you want to receive healthcare services.
Here are my top contenders for people who have treated me with insensitivity, callousness or downright rudeness recently.
1. Surprisingly Unsympathetic Obstetrician.
2. Patient Transport Operative
3. Patient Transport Co-ordinator

1. Surprisingly Unsympathetic Obstetrician
We know that sometimes, doctors can neglect aspects of patient care that other members of the staff team are au fait with. For instance, not inflicting unnecessary pain. (Obviously, all the doctors I have ever worked with would never contemplate such a thing). During my most recent obstetrician appointment, the doctor (having measured the size of my bump, and listened to baby’s heartbeat) decided to check “relation to brim”.
For those folks out there who may not have gone through this process, this is where they check to see how far baby’s head has descended into the pelvis- which is important for the midwife to check towards the end of your pregnancy. Although, baby can sometimes stay well clear of your pelvis until labour is cracking on… so I’m not clear why this is important to do when there are 10 weeks of pregnancy left to go.
Anyway, essentially, to check this, pressure is placed on the top of the front pelvic bone- I guess with training you can tell if what you’re feeling is baby head or just guts. So far, so good, you may imagine. Except, in my case, the joint at the front of my pelvis is inflamed and unstable- so much so, that merely putting weight through my legs separates the joint and causes huge pain.
The doctor has had extensive medical training- there’s always the chance that there’s a clinical reason for what they do which they have decided to not share with the mere patient- but sometimes, it’s as if they haven’t considered the impact of the tests they do, in terms of the trade off between “useful information derived” vs. “pain and mistrust generated”. This particular doctor decided to err on the side of gathering potentially useless information, and pressed hard on the front of my pelvis.
I didn’t scream, but i did whimper and go “OUCH”, so that it was clear to doctor that this was uncomfortable. Doctor finished pressing, and continued with the stream of information and questions” blah blah…. % chance of a vaginal delivery….blah……of, course, incidence of instruments….blah….emergency section….blah blah”etc.
Doctor seemed unaware that I was now seeing stars, and was completely incapable of following simple conversation, never mind being a partner in making decisions about my care. I was doing that silent weeping that has sneaked out when you’re busy concentrating on other things, and big fat tears were dropping off my cheeks onto the floor. Doctor simply asked me to return in 3 weeks and make the decision then.
I spent the next 3 days side lying, on 8 30mg codeine / 500mg paracetamol tablets a day. That’s double my usual dose of codeine- I’m trying to keep it to a minimum to avoid baby being exposed to any unnecessary drugs.

2. Patient Transport Operative.
If you use a wheelchair and you have an appointment in a hospital, you can use the patient transport service, it gets booked through the ward or department where you have your appointment. I was on my way to physio. I hadn’t been on the “patient transport” before; I had simply been using my local alternative transport service. The transport guy arrived and checked out the access (see the post about it for a fuller description). We then got out of the house, across the yard, and I got into the chair to get down the hill. We got down the hill with the minimum of difficulty, then got to the car.

That’s right- they had sent a guy to collect me in a car. I asked if he expected me to get into the car on legs? Yes, he expected me to get out of the chair and into the car. He rolled me up to the front passenger door, and opened it. Yep. It was just your standard car passenger seat. No turning disk. Not even a carrier bag to help to get into the car (don’t knock a carrier bag on the seat- it really is as good as a fancy turning circle at helping you to get into a car!).

I did ask whether he thought this was an appropriate vehicle to transport a wheelchair user in. He agreed that it wasn’t really suitable. Especially because he wasn’t allowed to transport the wheelchair in the car. I wondered what we would do with the chair, once I got out? He shrugged, and suggested he could leave it at the side of the road for when I got home. After all, I could use a hospital chair when I got there. I asked him if he thought it was a good idea for me to leave a borrowed NHS wheelchair at the side of the road? He agreed, it wasn’t ideal, but if he took it up to my house it wouldn’t be there for me to get back up the hill in, after I’d been to hospital.Good point, I thought.

I really had to get to my appointment, so I agreed, we just had to get there, and we could sort out all of this later. I got out of the chair, and there were a fair amount of the sickening cracks I’ve mentioned previously. And I did whimper a bit, and a few hot, fat tears squeezed out without permission.

I got in the car, and attempted to regain some of my usual composure and good humour. Patient transport guy was a little perturbed by this chain of events- I don’t know how he thought this situation would resolve- he seemed genuinely surprised that this was a painful procedure for me. To his credit, he got on the phone to the hospital, and changed my “transport code” (presumably from “nah- she just wants a bit of company” to “yes, she actually is a wheelchair user”), he then folded the wheelchair down and put it in the boot, “you can’t do without this the other end, can you love?”. He was the perfect driver the whole way, and was very sympathetic and sorry for all the trouble. None of it was his fault, he had just been given duff information by the department booking him.

3. Patient Transport Co-ordinator.
After finishing physio, the next step is, apparently, to go to the patient transport coordinator’s hatch, and report you are now ready for transport. This appeals to me, because I’m a bit of a Trekkie. However, as we will learn, it is probably quicker to wait for Scottie to “beam” you home than to go for the patient transport.

Firstly, you give your name. The co-ordinator smiles. Then, you ask when the transport will happen (because, I wondered is there time to get lunch and a decaff.? or is it so quick it’s better to wait until you get home?). Coordinator scoffed at the idea that he would be able to offer me an idea of approximate timing- it’s rare to see a scoff as part of a customer service experience. He smiled, indicating that I did, in fact, have time to get a coffee and a sandwich. I didn’t mind- I’d bought a magazine, I’d brought a book, my smartphone was fully charged for Tweeting….it’s a day out if you haven’t been on the usual social whirl, even if it is just the reception of the local hospital. So, the wait began.

I checked in after each half hour, just to make sure they realised I was there. But here’s the funny thing- more people arrived to get transported to here and there, the waiting area became crowded with elderly, infirm and incapacitated people. But nobody left. And nobody told us why.

I asked the coordinator if today was a normal day, if there were any specific problems with transport today (I must admit, I was concerned that if we were still there in the afternoon when there was a World Cup England football match on, we might very well be stranded for some time). He said “no love, it’s just that lots of people want to come in to the hospital today, so we’re collecting them. And we all have to have our breaks, you know”.

I work in healthcare, and am entitled to breaks by employment legislation. But they are not a priority- if our service users need us, we delay our breaks. Some shifts, we don’t take them, if there isn’t a way to leave the ward safe with a staff member down. However, I do agree that we should value our breaks higher, and make arrangements to ensure we take them at appropriate times every shift- it helps us to deal with a stressful job and prevents burnout- but that’s another story. Suffice it to say that I admired his protection of his staff, whilst slightly miffed that we weren’t prioritised a little more by his service.

So I waited…half an hour…..three quarters…..an hour. I asked if it was likely to take much longer. He laughed….and said it was likely to take a lot longer. Like the earlier scoff, this was an unusual approach to customer service, which would normally involve delivering such bad news with an appropriately sombre expression. But I got the impression that we mattered not a jot to him. After all, it wasn’t just me, there were at least ten of us waiting by now.

I started to feel concerned, I’d left with 3 hours to go before my next painkillers were due- and already 2 hours had passed with an hour’s appointment and an hour’s waiting. In addition, I have a time limit to being in the sitting position- 2 hours in a day is enough- I have to do side lying for the rest of the day. I decided to be upfront about it. “Look” I said “thing is, I can only sit in the chair for 2 hours before I start to get a lot more pain. I didn’t realise I could still be here now. My next painkillers are due in an hour, but they’re at home. Is there any way you can get me home within the next half an hour, please?”

“No love. I can assure you it won’t be within half an hour. It could be 2 hours from now.”

I was stunned. I hadn’t anticipated that it would be considered acceptable to leave someone in reception for 3 hours in a wheelchair, waiting for a lift home. Readers who use a chair or have family who do, may, at this point, scoff in a similar manner to the Transport Coordinator. This is our NHS, after record investment over 12 years. I’m a passionate supporter of the NHS, but at times like these I’m reminded how far below standards of customer service can be within the NHS, compared to what we would expect in the private sector. But I say none of this, just stand there doing a fair impression of a codfish.

I’m starting to panic. The coordinator has got bored with our conversation, and turns round to talk to his colleague about today’s football. I say nothing, realising that’s it, and wheel myself back to my allocated waiting zone like a patient little patient- just like the other ten patient patients waiting there. It must be because I’m new- I just don’t understand the rules. I look around. The people waiting all seem to have accepted this is now their fate, to wait in the hospital reception until someone comes to rescue them. Some are eating, drinking, one man is snoring, and others are just watching the world go by. A woman helpfully asks “are you getting sore in the chair?” I reply “yes”. She nods; it’s obviously an occupational hazard. “I get sore if I’m in the chair for long, too.

I’m so ignorant! I’ve been training, then working all this time- I’ve met countless people in my life and through my work that use wheelchairs. I genuinely didn’t realise what a mundane experience it is to be overlooked in this way. I seemed to be the only person there who was even prepared to question it.

Of course, I managed to find some painkillers in the bottom of my bag, so I was able to take them on time. I now go precisely nowhere without checking I have the next dose with me. My transport turned up after a total wait time of TWO AND A HALF HOURS. I was taken home and total chair time was nearly 4 hours when I arrived back home. Double what is comfortable for me. I spent the next 2 days side lying, but didn’t need as much codeine as after the obstetrician.

Interestingly, if I add up what I spent on a coffee, a sandwich, a drink of juice and a bag of crisps during the wait, I could have spent the money on the alternative transport service and got home without the additional pain. Just saying.