To HATE the phrase "lived experience"?

'@andyouwillknowusbythetrailofdead · Today 06:48

We've coped without the phrase for centuries and now in the last couple of years it's apparently become essential. '

Exactly!

I work in the charity sector and in the past few years I have been hearing all the time about the 'lived experience of service users'.

The term was not used at all when I first started working in the sector 20 years ago.

I don't need to hear that a homeless person has 'lived experience of homelessness'. The fact that they are homeless covers it...

Nobody needs to use 'lived experience' most of us use things like 'I have personal experience of'.

Amazing to see people lining up trying to claim the wording needs to make the distinction between experience in the workplace or similar when the wider context makes it obvious of what is being talked about.

I’m not the OP but I’d say you have experience of living with someone who has depression. Doesn’t negate your experience and that you know a lot, but it still doesn’t mean you have experienced depression itself.

YABU - Fixating on the term rather than why it exists make you part of the problem.

If husband is and always has been depressed since I’ve known him and I have been his support and in some years his carer but I wasn’t depressed would I have experience of being depressed? Genuine question OP

Experience of cancer - has had a diagnosis of cancer
Experience of working with people diagnosed with cancer - professionals
Experience of supporting/living with/caring for a person with cancer - carers and family
Experience of researching cancer - academic

It’s so easily explained by just properly describing what is meant. Who just says “I have experience of cancer” without qualifying it - “I was diagnosed/I cared for someone/I work at a cancer unit” etc?

“And I don't believe there's not a better way to express the concept in its academic sense, anyway. Unless the relevant areas of academia are certain made-up subjects with made-up vocab to match, and that's a whole different thread...”

@ThisFluentBiscuit gosh, you really are an expert on many things this fine Monday morning. Pouring scorn on areas of “academia” because you personally don’t understand or agree with them shows you to be narrow minded and somewhat limited in critical thought.

Many things are not able to be “proven” by experimental research therefore other approaches are necessary to enable a full understanding of a phenomenon to be gained. And importantly, how things impact human beings not just statistical equations. Just because you don’t believe there are “better ways” to discuss and describe things doesn’t mean the current terms need changing. Your opinion is really not that important.

It's the difference between secondary source and primary source information put into more everyday / user friendly phrasing.

Why? She might now have more knowledge having listened to other’s and researched the area but just having experienced her own child being abducted and murdered would only give her knowledge of what is was like to have her child abducted and murdered and nothing about how typical or otherwise her experience was, the motivation of those involved and how best to manage dangerous men in the community, what resources are needed to find those abducted, policing improvements that might be necessary, the general success of media appeals, the experience of parents who have been unable to garner media attention, the experience of children who have been abducted, the experience of murderers….

The phrasing has been amazingly helpful in making sure that people with lived experience are actively involved in guidelines about the care of people with specific conditions.

In the past, mainly professionals with knowledge and experience of conditions would be involved. Being specific about professional experience versus lived experience has helped to ensure that the importance of each group of people is recognised and included.

If we scrap this way of describing groups in healthcare then we risk going backwards in ensuring all experiences and their differences are recognised and used in developing guidelines, etc.

I understand that you don’t recognise professional experience so far in this thread. This is experience. I have spent over 20 years experiencing the condition I work within from a professional point of view. This is different to my husband who has no experience (as he works in a totally different field). The people I work with have lived experience so understand the daily realities of living with the condition but not the practicalities of delivering the care. We have different experiences that all need to be recognised in order to describe best care for a guideline.

FGS

IMHO the best workplaces/research/policy have people with direct experience actually doing the job, not have them there as a tokenistic consultant.

We all saw how Downing Street made mistakes during the pandemic because staff weren’t diverse in their direct experience. So, it probably didn’t occur to them there were families stuck sharing beds in temporary accommodation or overcrowded flats, having to go out on public transport to their jobs in supermarkets or cleaning hospitals.

This is an excellent point - I have lived experience of depression & using excel. This tells you nothing about the severity or recency of my depression or my skills with excel. It's more useful to say 'I had mild depression in my teens and it got better and hasn't been a problem since' and 'I have used excel for years and can use formulas but don't know what a pivot table is'. The key is the detail - someone with lived experience of poverty could have grown up with plenty of food, clothes and a warm loving home but no holidays, new tech or car - OR have grown up in filthy unsafe temporary council accommodation with inadequate nutrition. The devil is in the details.

Indeed.

What media do you 'copy edit' for?
For someone who seems so invested in using the correct terminology, you remain stubborn in the face of the facts. As so many of us have pointed out, with supporting evidence, there IS a difference between the two phrases, and lived experience is not a new term or fad.
You are wrong.
And full disclosure - I was a journalist (medical and acdemic)

I have experience of homelessness because I worked in the homeless sector for ten years. It doesn't mean I have lived experience. It means different things.

If you've read something in a book or experienced it second hand. For example, I may have experienced racism via my children experiencing it, without myself having experienced it (because I'm white).

Actually @ThisFluentBiscuit - if your issue is the term not the concept - can you come up with a way of describing the subset of the people who have the dreaded “lived experience” of a condition/situation that clearly differentiates them from others with experience that is professional, or those with personal experience of a family member /friend having that condition/being in that situation, and those who have studied a situation but not for hands on involved with it?

”lived” “professional” “academic” “personal” can all be added to the word “experience” and those working in the fields understand when someone says they have experience, it’s quickly clear what sort of experience they have. What would be better?

(Or do you think it’s better to not have a term, to have to just say “experience” and assume everyone guesses correctly what you mean by that or write out whole sentences detailing in what way, because while less efficient- that would mean you don’t have to face language evolving in your adulthood .)

I think you didn't read my post properly. You need everybody's voices. It's incredibly patronizing to create services for people without speaking to those people that actually use the service. Obviously you don't just speak to one or two but have in-depth conversations with many.

It's naff all to do with lanyards. I'm not convinced you know much about the service industry apart from getting frothy on Twitter.

Academics and researchers can play an important role but that doesn't reduce the need of listening to people with lived experience alongside with everyone else I mentioned previously.

Yes, and some health professionals will have both professional and lived experience of a condition. In certain clinics, it is important to specify which.

You’re right OP. Someone, somewhere has decided it was a good idea to use this phrase in health and social care settings when it really wasn’t needed. And it’s seeping into normal language.

Some people have experience of homelessness. e.g. they were actually homeless.

You shouldn’t need to say lived experience If all other descriptions are appropriately qualified e.g. someone who worked for a homelessness charity for 20 years.

She has professional experience in supporting homeless people. She does not have experience of homelessness FFS.

I think the phrase is used a lot as a put down by people who think lived experience trumps everything else. It also comes with hefty assumptions about other people’s lives and experiences.

I have lived experience of DV but that doesn’t mean I know anything about anyone else’s experience of it and I know far less than professionals who deal with DV victims. It is also not something I ever discuss with anyone.

I think lived experience signifies an emotional experience. Its something that's meaningful to the individual on a deep and personal level. Its something that they cannot step outside of so it becomes part of who they are. Its very different from academic or professional experience where its possible to be knowledgeable about a subject without being able to resonate with how it feels to go through it.

Pulp’s song ‘Common People’ is a good example of the difference between experience vs lived experienced.
’ I wanna live like common people ‘ etc - you are experience living like a common person - but someone’s LIVED EXPERIENCE of being common is going to be entirely different.

surely OP you can see the distinction…

As someone who has worked in teams that work with vulnerable populations, the addition of a team member with lived experience is invaluable.

IME, direct experience is very helpful in setting parameters, guiding research/policy and in researching what service is required. But can be less helpful than professional experience in identifying the structural causes and solutions.

That’s because direct experience is only of one case (your own) whereas professional experience is of many cases over many years - what causes them and what solves the majority the best. Plus, what other factors are at play that affect that service: constant changes, lack of resource etc.

Even research into service design is better if it includes the service providers (i.e. professionals) and should draw on a large representative sample of people with direct experience. Because, for example, a single, retired, affluent White man is unlikely to have the same direct experience (or needs) as a Black lone mother of three kids who works two jobs. If you only consulted the man, you may develop a service that doesn’t work for the woman.