Having just done a quick twitter search I’ve been grumbling on about Hospital Passports for a couple of years, a recent prevention of future death report made me think about them again this week, and question their use so I thought I’d put some thoughts down here, hopefully to prompt further discussion.

Just to flag that a hospital passport is only as useful as the accuracy of the information in it – blindingly obvious I know but prescient learning from @HandleyInquest #WeMDT #WeNurses

— GeorgeJulian (@GeorgeJulian) January 30, 2018

What is a hospital/healthcare passport?

This is taken from the NHS website: ‘A healthcare passport is a document about you and your health needs. It also contains other useful information, such as your interests, likes, dislikes and preferred method of communication. Healthcare passports can be very useful if you have to go into hospital. As well as giving hospital staff details about your health, the other useful information can help staff make you feel more comfortable. You may be able to get a healthcare passport from community learning disability teams, your GP or your hospital’.

Truth be told if you google ‘hospital passport’ you can download a gazillion templates, variously branded and complete your own, you certainly don’t need to go cap in hand to professionals to produce one for you.

What’s the intention behind hospital/healthcare passports?

I believe the intention is that all the important information about a person is gathered together in one place. I guess in theory this passport should enable those providing care for someone to get to know about them quickly, perhaps also to understand people’s preferences when they may not be able to communicate them quickly enough/in an emergency/in a way that medical staff can understand.

On the surface this seems like a reasonable idea, nothing too controversial, be prepared, help people to help you etc etc etc.

What’s the reality on the ground?

I start with the disclaimer that what I hear is nearly always extreme, a lot of information I gather from bereaved families or in coroner’s courts, these are likely to be exceptions; however when it comes to hospital passports I’ve also had numerous conversations over the years on social media where people have shared their concerns, and they nearly always come back to the same points:

1. A hospital passport is only as good as the information it contains. Which is only good if it is current and regularly reviewed.
2. A hospital passport is only good if it is available to hospital staff and then if it is read/understood/used.
3. A hospital passport is only good as a starting point, it should not replace the need for a full medical history to be taken, or for a patient to be examined, and for healthcare staff to communicate WITH THEM

I have a grave concern that hospital passports are the sort of thing that it’s hard to argue against, because on a common sense logical level they make sense, but I feel that they’re more performative than useful. It’s an easy thing for lazy campaign organisations to call for (you know the ones that run campaigns for healthcare staff while people die prematurely in the services that they run themselves), they’re a relatively low cost intervention (couple pieces of paper), they’re easy for trusts to stick on a page of their website, to say that they support, but they’re also incredibly easy to ignore.

At Richard Handley’s inquest we heard that his hospital passport contained no reference to constipation or bowel health, despite him having issues with it since childhood.

Coroner: You were asked there are no references to Richard’s constipation in current records such as his hospital passport or support plan. Why?

— Richard Handley Inquest (@HandleyInquest) February 1, 2018

I wrote at the time:

Richard’s family clearly loved him, cared for him and advocated to ensure his dietary and health needs were understood and addressed. If you looked at Richard on paper he ticked all the boxes, he was pleasant and amenable, a cheeky chappy with a wicked sense of humour [not that this should matter to the level of care provided to him of course, but it is context], he had strong health advocates in his family members. Richard was on his GP learning disability register, he had some annual health checks, he had a hospital passport. Mention an initiative to ensure learning disabled people can successfully access healthcare and Richard was engaged with it. And yet still he died.

At Joe Ulleri’s inquest we heard from the amazing carers at L’Arche Manchester who valued Joe as one of their community and knew him so well. They talked about how they provided Joe’s hospital passport to the staff at the MRI, never to be seen again:

C: We've heard from your colleagues about this round the clock care and company given to Joe. Were you part of that?

COG: Yes

C: Did you ever see the traffic light, hospital passport again?

COG: no

— JoeInquest (@JoeInquest) March 25, 2019

This week I shared a twitter thread about the death of Julie Ann Barrow, you can read it here. You can read the Prevention of Future Deaths report that Coroner Alison Mutch issued in relation to Julie’s death here. I wasn’t at Julie’s inquest and the only publicly available information I could find is what’s contained in the PFD. With reference to her hospital passport the Coroner notes:

‘2. On each of her admissions her parents took her needs passport in with her. The inquest was told that this should be used to develop the reasonable adjustments care plan and be accessible to all staff caring for her. On her first admission there was no reasonable care plan put in place despite the fact that she had clear and significant disabilities that would have benefitted from an effective plan and her passport was available. Her passport location was not known by all staff caring for her’.

There we have it, Julie’s parents did all they could, what was expected of them. They ensured the passport went with them to the hospital and then what? Tumbleweed.

When chatting about this on twitter this morning, Katherine shared:

My experience was passports were used to justify less engagement with the person. Boxes were ticked that a passport was present and it was never read. Can’t imagine things have improved in current situation ☹️

— Katherine (@Katie497) April 3, 2020

And Lillington shared:

Also used as an excuse by staff – when I questioned things – that she understood what was happening & was consciously failing to reply. She never spoke much & really didn't understand the hospital situation. 2/

— Lillington (@Lillington) April 3, 2020

I think we need a conversation about the value of hospital/healthcare passports, not about their intentions but about their actual use. I’m fairly confident that as an aid to plan routine surgery for example, they could be useful, but I wonder whether that small benefit outweighs the risks associated with them.

They’re often unwieldy, our local trust template (that looks pretty identical to any other) includes 11 pages. We constantly hear how overloaded with paperwork healthcare staff are, is anyone really going to read 11 pages? Is the document really that well designed if it needs 11 pages? In fact it’s sort of answered it’s own question there because they had to introduce a traffic light system of what information was essential (red), important (yellow) and likes and dislikes (green).

I raise it Jane because I think often people feel if someone had a passport (he did), if they went for health checks (he did), if he had an engaged and loving family (he did) that somehow that’s enough, but sometimes the passport/check etc leads to a more general apathy #weldns

— GeorgeJulian (@GeorgeJulian) September 18, 2018

Having mused on hospital/healthcare passports over the last couple days I think the thing I dislike most intensely about the idea is that it feels like a form of othering; it allows healthcare staff to not truly attempt to engage with a learning disabled person, we remove the need, and I suspect provide a false confidence that because there’s a passport with the person, they’ll be ok/well looked after/communicated with.

I’ll finish with another observation from Julie’s parents, highlighted by the coroner in her PFD:

3. Julie Ann Barrow was cared for devotedly in hospital by her parents who are in their 80s. Their evidence to the inquest was that Julie was never effectively communicated with by clinicians treating her and her needs not understood. So far as her needs were concerned she was “invisible” to staff.

I’d welcome any thoughts on hospital passports and how to ensure they are used effectively. Given I’m writing this in the middle of the coronavirus pandemic my anxieties (and those of many others) are raised, I’m so worried about the quality of care likely to be provided, or denied, to learning disabled people. If you’re a family member/carer/ally reading and have someone’s hospital passport available, make sure it’s up to date, and make sure you don’t rely on the fact that it will be read. I’d also look out a cracking photo of your loved one, so if they’re admitted, those caring for them can get a sense of them, see that they’re loved and important. My hunch is that would be a valuable addition. We need to make sure that learning disabled people are seen as fully human, we need to break through the invisibility cloak, as far as is possible.