Dis Life: Why is NHS patient transport so difficult for people with disabilities?

I’m a reasonably frequent user of patient transport. One of the reasons for this is that I have an energy impairment. This doesn’t look like ‘feeling a bit tired’, it looks like being laid out in bed for days because I have, or haven’t, done too much. It looks like being climbed-a-mountain levels of exhausted after drinking some water, or going to the loo, or even sitting down, because sitting down takes way more energy than laying down.

Which is why, for the first time ever, I booked transport with a stretcher. So I could lay down. This was, it turns out, a mistake. Because G4S, which runs a considerable swathe of the country’s non-emergency ambulance transportation, doesn’t fit its service to Disabled people. It fits it to a contract.

For reasons I still can’t get a clear answer on, it doesn’t wait and return for patients who need to get home quickly after an appointment. Here’s how that can shake down. Say, I have an appointment almost an hour away from home. I have to be ready two hours before my appointment time. So if the ambulance comes early, which it will at distance, I am delivered early. And left.

If I’ve booked a stretcher, I am horizontal, and conserving energy, for the journey. This makes sense, even if there is an extra pick up (they like to fill a vehicle, which makes financial sense – but can also mean patients have to endure a much longer journey, which can massively effect pain, energy and travel sickness – all common things for Disabled people. To weigh up whether this makes practical sense, ask whether it would work with emergency ambulance transport – no? Exactly. Because the health outcomes are the priority there. The patient, not the contract or bottom line, is the priority.)

But once I’m at the hospital, early, what then? There is never a stretcher. Because oddly, NHS hospitals have it in their heads that you rock up in your own wheelchair, or can sit in one of theirs, or on a chair. They haven’t worked out, despite having wards full of beds, that some of us need beds. I can’t bring my bed from home in an ambulance, and the ward sisters get freaked out about having ‘nowhere to leave a stretcher’ in a clinic (in a hospital!) so, I get seen slightly early, and dumped off my ambulance stretcher, which is then taken away by the ambulance crew.

My appointment takes all of three minutes. I’m literally three minutes behind the crew who brought me in. Who have now been sent to their next job, which involves them passing my city. But because that job has been booked by the control centre, there is no wiggle room. So now I have no stretcher, and no travel home. I’m metaphorically on my knees with exhaustion now. Not practically, because of hideous swelling, but metaphorically.

The contract stipulates that the return ambulance has two hours to pick me up. The receptionist phones G4S at the end of my three minute appointment. I phone them twelve minutes later to be told that because the journey was only booked twelve minutes ago they can’t tell me how long I need to wait. Knowledge helps me focus on how to spend my deficit amounts of energy.

I am propped on a chair in a corner. Sat on a chair against a wall in a strip-lit (exhausting, overwhelming lighting – terrible for us pained and knackereds, and also terrible for neurodiverse people) busy waiting room, with chirpy morning TV going on in the background. A recipe for expending more energy I don’t have.

The outcome is, I end up flat on the floor, unable to sit up any longer, and having used the last of my energy to be told that the crew would be back for me after their current job (so optimistic 45 minutes to that, half an hour to drop the patient off at a local hospital, and 45 minutes to me – on the cusp of two hours – likely two and a half, minimum). I’m lying on a cold, dirty floor, jumper over my head to alleviate the pain of the lights. It’s busy. Nobody bats an eyelid. I can’t move. I’m too ill to move. Staff notice me twenty minutes later. Twenty minutes. I’m wondering what would have happened if this was a heart attack, not an exhaustion collapse.

At this point, I’m moved to a side room and popped in a recliner with a cup of tea. I slump here until the ambulance comes. Almost three hours later. I’ve argued for a much faster taxi home, but because I sensibly booked an energy-saving stretcher, I have to wait for one home. Bonkers G4S health and safety says it’s the mode of pose that matters, not the speed of travel (it’s the SPEED OF TRAVEL. This is what stops the expenditure of energy I don’t have, reduces physical pain, and ends up with me spending the next THREE DAYS in bed (I can’t actually do this, because more hospital appointments, which I end up dragged to by an incredibly handsome carer, while still in a state of absolute exhaustion). It’s a rock and hard place. I can’t do upright. But I can do horizontal for a prolonged state of waiting even less. So which would you plump for?

The stretcher ambulance turns up. Three hours later. A whole hour after the contractual agreement says G4S should pick me up. Its phone operative had told me that they had found another crew who would be able to get me after an hour. I know from experience that this is often nonsense. Or as the crew, correctly, told me when they did rock up: “We’re so sorry. They lie.”

And then there is another lovely lady to get home. Which adds an extra 45 minutes to the journey. Horizontal preserves energy. Upright in a seat is impossible. Extra time horizontal results in nausea. Slumpedness results in boobs restricting airway making breathing harder (every time a bloke tells me big boobs are a good thing, I need to remind them of this – suffocation. Irritating when not ill, serious when ill). By the time I get home, I’m retching into a sick bag. And it’s six and a half hours since we set off for what should have been an hour’s journey there, a three minute appointment seen on time, and a forty minute post-rush-hour journey home. Six and a half hours of pain-inducing, energy sapping exhaustion that wipes me out for three whole extra days after this day.

This is my story, but I hear the same things from other service users. A friend who had had a stroke recounts a 21 mile journey between hospitals becoming a 65 mile journey picking up and dropping off other people at other hospitals, while her pain and exhaustion levels rose higher due to the longevity of the journey and the juddering over countless pot holes. It is almost impossible to convince people of the physical pain such arduous journeys induce because pain is invisible. Such journeys aren’t the exception for many of us who use patient transport.

So why are we in this juddering, slow, sinking boat? Why are patient needs not a part of these contracts? There are over 11 million patient transport journeys taken every year across the UK. A new framework for the service was agreed in 2021 and it prioritised renal patients. But renal patients aren’t the only people who need faster, more practical travel solutions. Once again, it feels like Disabled people are being pitted against each other, with organisations which can shout a little louder being heard, and the rest of us waiting on the floor for three hours in dribbling silence.