Director of Lived Experience role at NHS on £115K

[ImJustMadAboutSaffron]

www.healthjobsuk.com/job/UK/Staffordshire/Stafford/Midlands_Partnership_NHS_Foundation_Trust/Director/Director-v4828381

What the absolute hell? Words fail me.

I’ll do the job for a fiver. And I would too. Because it does need to be done. Most people with life altering/limiting conditions uses secondary healthcare more than primary healthcare and navigation of the system to get what you need is almost like a full time job,
There are many simple ways to make it better,

I don't think you can avoid the question of who is going to deliver all the improved care and implement ideas and instructions from Board level.

There are not enough staff.

@checkedcloth but there are people out there that could and would do these roles for less money. A lot of the time they don't get a look in.

I have a child with a genetic condition and lots of experience of dealing with the NHS in multiple different areas - I would be happy to provide feedback free of charge if anyone ever asked me. I am pretty articulate/well-educated with English as my first language and time to devote to this and frequently wonder how parents/patients without the privilege I have navigate the system.

In the last 6 months alone I have had to chase (several times) a routine appointment that wasn’t set up, chase up results which hadn’t come through a month after they were due, negotiate a cancellation appointment to obtain an essential screening test which the consultant termed as urgent but radiology couldn’t fit in, and challenge the choice of the screening method originally suggested, given the clinical requirements of her condition (which her main consultant confirmed). It’s a blimming full time job and her condition isn’t even that serious, as long as we keep on top of the ongoing monitoring appointments/screening tests.

I do appreciate the service we receive and follow a Facebook page with many American parents of children with the same condition where insurance has stopped/limited payments for treatment (which is lifelong) and so am extremely grateful to have the NHS. But it can be a two tier system favouring those who can navigate its complexities and that shouldn’t be the case.

My suggestions for improvement would focus mainly on communication, both internal and effective communication with patients, and admin systems where someone answers the phone (and is there on a Friday afternoon). The problem is partly money/staffing but also systems.

Now, rant over, where do I send my £115k invoice 😄

There's already NHS Friends and Family. Just pick up a leaflet in your GP, hospital, anywhere. It's a national scheme with yet another target. Staff will be glad to give you one. Will get someone off their back asking for it to be met.

Or ask a Director.

Yet someone who is articulate enough to have experience at board level is not going to experience the NHS in the same way as the vast majority.

I've seen it in action when spending time on a ward with my DS what a difference being articulate and having an influencing presence can make to the way staff treat you.

My sister has often spoke about the much better outcomes she gets compared to other parents in the same situation because she is able to argue her case.

I'd like to hope this role will have a positive impact but my lived experience tells me that won't be the case.

Yes a leaflet will do the trick

Or ask a director!

Are there really people on this thread who think this post is for just a lone person to opine based on their experience and their experience alone?

The PP who said they often wonder how people without their privilege navigate the system has hit the nail on the head - that is what this post is for. And your suggestions to improve communication etc - yes that will help too - but is having the phones answered on a Friday going to help everyone? Might someone with entrenched addiction and or mental health issues with a host of other difficulties, might they need something else? Something different? Should we ask them and then make sure that something workable is developed.

Done right embedding lived experience views i to the service could save the service money down the line - people might not miss appointment, people might get more effective support earlier and not need to stay in the system, people might get their needs met else where outside of the health service. It's the long game.

I'm articulate enough. I've got significant experience of secondary care. Having disabilities and health conditions affects every walk of life.

What a load of gobbledegook!

@Ineedachangerightnow

Where did I say it didn't? 🤔

The point was that someone with the skills to be at board level will not have experienced anything like the difficulties that those that are less articulate would have.

*difficulties in navigating NHS care.

I've seen first hand the shift in body language, respectfulness and tone that someone with an authoritative presence receives compared to those who don't.

It seems a bit chicken and egg, you can't have good patient care without the strategists, but you can't implement good strategies if you don't have the front line staff. We currently have a system that's not working, because there isn't enough finding for both those things. Yet we're still advertising jobs like this. Imo we should switch it, so we have fewer of the strategists and more of the front line staff. Give that a try, see if things improve. Because at the moment we seem to be spending on roles like this which can't fulfill their aims, which seems like a collosal waste of money. Whereas money spent on front like staff will never be a waste, the NHS just can't function without them, and it's currently not functioning because there aren't enough of them. If the NHS were working in more ideal circumstances, where there's enough funding for the basics, then yes, roles like this are enormously valuable. But for now, in a crises, when it can't even deliver the basics, the basics are where the money needs to go.

But you don't know that they haven't had experiences where they weren't articulate due to their difficulties. Whilst able to hold this role, yes they will be articulate. But if they've experienced mania, where they can't holds train of thought and they speak at a million miles an hour, they won't have been articulate. If they were so depressed that they couldn't communicate much at all then the same. If they've experienced psychosis then again they won't have been clear and articulate. They may well have made massive strides in confidence and communication to get where they are.

I'm curious why PALS representatives can't do this. They have lived experience, and they negotiate and intercede between patients and staff.

It's like 'what the actual fuck is the job?' It's like a cryptic crossword puzzle.

This!

Frankly words fail me.

www.londonworld.com/health/barts-health-tiktok-nhs-staff-anger-head-office-ps14k-coffee-machine-doctors-nurses-3875326

check this out- more very recent corporate nonsense, this time from Barts.

while doctors and nurses on the frontline don’t get time or a place to have a hot drink and go unpaid overtime

Ok - you deleted my post - what did I do wrong?

Use the term 'delivery manager'? All the required skills are delivery skills.

I read the ad in detail. They're asking for someone with 'lived experience' themselves, it's stated specifically that they want a person who has a life-altering condition and experience of dealing with services.

So my one line post was absolutely accurate. You don't like the word 'disability'? I do. I'm autistic with adhd, blind in one eye and hearing impaired. Those are my disabilities. I am not ashamed of them, nor am I ashamed to name them for what they are.

You should be ashamed of your 'Talk Guidelines' if they prohibit that.

Can we not? Personal me and professional me are two very different people and to maintain the professional me requires a lot of masking and a lot of energy (and a lot of medication).

I've witnessed the levels of "care" you're describing and the differences between how you're treated when you're in the educated middle class and when you're on your arse and in the grips of a crisis. I've sat in group sessions where the levels of education are as broad as they are wide and witnessed doctors struggle to communicate skills and ideas to the poorly educated members of the group. Doctors seem incapable of simplifying their language!

Having someone like me (but not me, this is my worst nightmare of a job!) At director level who has witnessed this and participated in this level of care is crucial to get change in place. Some of the things I've seen and experienced over the years would make your eyes pop!

If this job is to give the user’s point of view to NHS staff, why not listen to PALS? This is already covered.

Perhaps this is an administrator who can map requirements and show the trust is following different, vague rules and directives? The private sector has this with different governance and compliance roles, and DEI people. It’s all just stuff that people should already be doing, but there is a terror of somehow not being seen to fo it snd not being able to prove thsy it has been done. Thus an army of paperpushers.

This is a brilliant role! I'm so pleased how forward thinking NHS Trusts are re: lived experience.

The people who are best placed to improve a service are those with lived experience of receiving that service. Co-producing solutions between patients/clients/customers and staff is the perfect way to get services that are fit for purpose. Thanks for highlighting this progressive practice!

It depends if the person with lived experience is also a research expert (the two aren't mutually exclusive. I exist as proof) I use mixed methodologies to create convincing evidence based insight of what needs to change and why.

Wish I was local because this role is right up my street!

The people on this supporting this are deluded if they think that this role will change anything for Sarah with bipolar who can’t even get admitted to Redwoods as there are no beds so ends up getting even worse and has to go even further away. There you go - name changed- but a lived experience of ‘care’ at this trust.

My traumatic birth was caused by no midwife/obstetrician available when I needed them. My 'lived experience " is that front line staff (or the absence of) are what make the difference.

Hence why I would rather see the money spent on more front line staff that some made-up over- paid role.