Research on carers / caregivers, suicide, homicide. Associate Professor
@unibirmingingham
. Making art from science. Australian in the UK. Always swimming.
"It’s hard to explain to people: you can love your child & want the best for them, but also be so overwhelmed you want to die"
With 40% of parent carers contemplating suicide, the time is NOW to fix the system failing disabled children & their families.
Copping so much flack for this tweet. This was not about my ego. It was about highlighting one of a thousand instances of sexism that women encounter every day. It’s not about the title, it’s about the fact that this wouldn’t have happened if I was a man.
The problem isn't being the parent of a disabled child.
The child isn't the problem.
The disability isn't the problem.
The problem is a system that makes it impossible for parents to get their kids the support & resources they need.
@lislindley
Ten years ago when I got my PhD, I went into the bank & said I wanted to change my title. The woman said “Congratulations! What’s your married name?” - Sigh.
What I’ve learnt from the UK govt this week:
I must work & not get sick.
But if I get sick, a doctor can’t say I’m too sick to work.
And if I care for someone else who’s sick, I won’t have enough money to live.
So I must work.
But not too much or I’ll be charged with fraud.
I've been doing research on the needs & experiences of unpaid carers for 12 years, across four countries.
For
#CarersWeek
, a 🧵of the Top 5 messages that have consistently come out of every piece of research I've done:
I can’t hold back the tears anymore.
A mother & her disabled child are dead.
I’ve devoted 10+ years of my life to preventing deaths like this, but it’s still not enough.
Carers entrust their stories to me so I can fight for them, but this week I feel like I’ve let them down.
Two papers submitted today.
One on burnout in parents caring for disabled children.
The other on homicides & homicide-suicides perpetrated by unpaid carers.
Hoping for swift, positive reviews🤞🏻🤞🏻so we can start using the findings to inform better policy & practice for carers.
@whereisdaz
Awful & weird indeed. I’m trying not to engage with the nastiness - because it’s too exhausting & depressing - but I’m really grateful that you & others are taking up the fight on my behalf.
News today of a murder-suicide involving a mother & her disabled child.
There are ~13 carer-perpetrated homicides & homicide-suicides in England each year, with a range of motives.
All are tragedies, many could have been prevented.
If you need help, call
@samaritans
.
Thanks
@sallyephillips
for flagging our research on
@GMB
& making the message clear:
#ParentCarers
don't contemplate suicide because they have disabled kids.
They contemplate suicide because they've been by broken by a system that's failing their kids.
Please
@BBCRadio4
, when OAPs say they’d be better off dead than living through another winter without heating, don’t describe them as “dramatic”.
It is their reality & it takes incredible courage to admit it.
They need support, not judgement!
#EnergyCrisis
#SuicidePrevention
(1) Carers need respite. And that respite needs to be regular (weekly at a minimum) and fully funded.
(2) Carers want to stay in paid employment, but when that's not possible they need a Carer's Allowance (and/or other state support) that doesn't force them into poverty.
🧵
On
#WorldMentalHealthDay
, let's acknowledge that poor mental health in
#carers
is NOT a pathological response in individuals.
It is a NORMAL response to extreme circumstances that are created by a SOCIETY that routinely fails disabled people & their families.
I'm shocked by how many of my colleagues are NOT
@ucu
members. Unions are the reason you enjoy weekends, holidays & sick leave. If you'd also like to enjoy your retirement, it's time to sign up & join the fight for pensions.
#ussstrike
#ussstrikes
#strikeforuss
#solidarity
“Well enough to go home” means a patient is no longer in need of hospital care.
It does not mean “well enough to go home without support.”
Which is why investment in social care & unpaid carers is so vital.
#Carers
#UnpaidCarers
#SocialCare
I'm excited to announce I'll soon be joining
@unibirmingham
as Associate Professor in Social Care.
I'm so grateful to
@exetermed
colleagues & students, who took a chance on a foul-mouthed Australian, helped me build a life in the UK, & made this next exciting chapter possible.
Our latest research shows that more than 40% of parent carers have thought about suicide.
The new government must take action & put real support in place for disabled children & their families.
#ParentCarers
#SEND
#Disability
#ChronicIllness
Beware of inspiration porn this
#CarersWeek
. Stories that describe the selfless heroics of carers, but don't ask or explain why.
Carers ARE amazing, but it's because they HAVE to be!
So don't stop at inspired. Take action to ensure carers are visible, valued & supported.
My application for Indefinite Leave to Remain was successful.
It's an incredible relief and I'm delighted to know I can stay in Devon & at
@ExeterMed
for the foreseeable future.
(7) When caring at home is no longer the best or safest option, residential care must be available and it must be age-appropriate, financially viable, high-quality, and full-time.
End 🧵
(okay, Top 7)
(6) Love is not enough. And not all care is an act of love. So political & charitable narratives that emphasise love as a motivation or a protective factor will never lead to the kind of changes required to truly support carers and those for whom they care.
🧵
(3) Carers need to be believed, trusted, and treated with respect by health, social care & education professionals.
(4) Carers need to be supported - emotionally & practically - by friends and family.
🧵
There are no words to describe what an honour it is to have won the Research Inspired Teaching Award at tonight’s
@ExeterGuild
@FXUtweet
Teaching Awards. I’m passionate about my students, I’m passionate about my research, & it’s a privilege to spend my days doing what I love.
Our research shows that more than 40% of
#ParentCarers
have thought about suicide.
Here's what we want policy makers & professionals (across health, social care & education) to do to ensure better support for disabled children and their families.
#SEND
#SuicidePrevention
So many parent carers have responded to this article, seeing their own experiences reflected in this research.
Will
@UKLabour
do what’s needed to support carers? We need a Carers Strategy and one that names suicide prevention as a priority.
Delighted to hear that, together with my colleague Catriona McKenzie, I've been awarded a
@UniofExeter
Arts & Culture Fellowship. This will allow us to engage a local artist on our family care project, leading to some exciting creative work!
I spent this week teaching UK students about the social model of disability & the ethic of care.
There is nothing caring in this announcement & these measures will further disable the most vulnerable in our society.
A disturbing case in point.
And so begins my last day at
@ExeterMed
.
Seven years have passed in the blink of an eye and I'm so grateful to the students & staff who shared my vision & so proud of the things we've achieved together.
Next stop,
@_HSMCentre
!
I'm blown away to have received the Inspirational Leader Award in the
@ExeterMed
Staff Aureus Awards.
Our brilliant students nominate & vote for these awards, and it really is a privilege to guide them through their studies & play a small part in their incredible lives.
"If someone's not wearing a mask, don’t challenge them – consider the courage it may take them to appear in public these days without one"
Great stuff from
@SelfHarmNotts
on the need for compassion & understanding for those unable to wear masks.
Did you know many unpaid carers contemplate suicide?
At-risk carers need support and our research sets out a clear plan of action:
If you want to implement it in your service or charity, we're here to help.
#Carers
#SuicidePrevention
#SocialCare
"When you picket, well I know I'm gonna be, I'm gonna be the one who's picketing with you.
And when you're striking, well I know I'm gonna be, I'm gonna be the one who's striking next to you"
#SolidarityIsSexy
One in three
#UnpaidCarers
already contemplate suicide.
DWP's relentless pursuit of those who've mistakenly claimed
#CarersAllowance
will only make things worse.
Me in
@guardian
, with thanks to
@JoshHalliday
for covering this complex issue.
I'm sick of fighting 'the system'.
We cannot do meaningful
#CoProduction
if every time we try to include patients & carers in
#Research
, we're forced to justify our decision to include & reward them in ways that value their expertise & don't jeopardise their safety & wellbeing!!
@seeshespeak
That’s the third time this week I’ve heard someone say they or a colleague is using AI to write their emails. And all three were academics. Deeply concerning.
Five years ago today I packed up my life and moved to the UK.
It's been a wild ride and I'm incredibly grateful to all the friends, colleagues, students, carers & partner organisations who have welcomed me into their lives and helped me make it home.
The campaign
#NoLoveLikeIt
means well, but actually perpetuates two harmful myths:
1. Every carer loves the person they care for.
2. Love is enough to survive the challenges of caring.
The exact myths governments use to rationalise their failure to support
#UnpaidCarers
.
Honoured & humbled to have been shortlisted for an
@ExeterGuild
Teaching Award in the category of Research Inspired Teaching. It is a privilege to introduce students to the wonderful, crazy world of research & a joy to see them embrace it.
I was back at
@ExeterMed
today for the first time in months and I promptly burst into tears.
The pandemic has had so many silver linings, but I miss this place, I miss these people, I miss this life.
#CarersWeek
is about UNPAID carers. People caring for family or friends with illnesses & disabilities.
Politicians & organisations tweeting support for care workers under this banner are missing the point & further silencing the voices of unpaid carers.
#MakeCaringVisible
An absolute privilege to speak at
#ANForum2022
today, sharing the evidence on suicide & homicide risk in carers.
@DementiaUK
Admiral Nurses already do fantastic work supporting at-risk carers & it was great to see even more ideas being generated today.
Sincere apologies if you’ve contacted me for a legitimate reason & not had a response. In an effort to filter out the vitriol, Twitter has inadvertently filtered out some of the kindness & genuine enquiries. Bear with.
Please make some noise for
@CatherineTalb
, who has just had the first paper from her PhD accepted for publication. I am a very proud supervisor tonight.
It is with a heavy heart that I announce
@SUWTues
@suwtuk
@suwtna
are coming to an end. It has been a fabulous 5 years & we are so proud of everything we’ve achieved. Please join us for our final sessions & help us go out with a bang.
Want to understand why over 40% of
#ParentCarers
have thought about suicide?
On the latest episode of Care Fully Considered, I break it down & talk with hosts
@WillowKaty
@Corner_Eighteen
about the support needed for disabled children & their families.
I'm honoured to have been shortlisted for the Supervisor Award in
@ExeterMed
. Our PhD & undergraduate dissertation students are a joy to supervise & it's a privilege to train the next generation of researchers.
We’re delighted to announce the shortlist for
#ExeTeachingAwards
!
Thanks to all who nominated + congratulations to all shortlisted 👏 Join us next Tues from 19:00 on our Facebook or YouTube for the ceremony ✨ Check out the shortlist:
I'm delivering the last of my
@ExeterMed
online teaching today & I'm ridiculously proud of my students.
They showed up. They weren't in their PJs. They included their children & pets. And most importantly they brought their sense of humour.
They really are a remarkable bunch!
Universities never closed.
Staff have worked around the clock to continue teaching & research throughout the pandemic, prepare for online delivery in the next academic year, AND do the science that's informing national & international responses to COVID-19.
Students must decide by the middle of next week whether or not to accept university offers for the new academic year
But will UK universities open in September?
It is incredibly exciting and humbling to be elected, along with
@JoG13
, to represent
@ExeterMed
on the
@UniofExeter
Senate. What a wonderful opportunity to help make the University of Exeter an even better place to study, work, research, teach, and engage.
“You were the one person I told my family they HAD to meet” - Blown away by the kindness of my
@ExeterMed
students on their graduation day. It’s been a joy & a privilege to be part of their journey and I’m certain they’ve changed my life more than I’ve changed theirs.
We've been awarded money from the Strategic Priorities Fund to support our
#CaringthroughCoronavirus
research!
The research is already having an impact on policy & the funding will strengthen our capacity to inform meaningful support for unpaid carers during the pandemic.
The lives, cultures & languages of Indigenous Australians were destroyed by the British empire.
How any decent white Australian can put that aside so they can enjoy the “most important historical event in the UK of our age” is beyond me.
"Intimate relationships between staff & students will always be unacceptable."
Wonderful to see
@UniofExeter
implementing this clear policy. One of only four universities in the UK to have done so.
Another great legacy of
@SundayMargot
's
@ExeterGuild
Presidency!
It takes a lot for
#carers
to make the front page… and this is a lot.
I wouldn’t be surprised if being prosecuted for fraud or forced to repay thousands of ££ pushes some carers to the point of suicide.
@DWPgovuk
should be ashamed.
#UnpaidCarers
Working group members - myself included - contributed considerable time & expertise, because we thought this government was committed to real change on
#MECFS
.
Delays in releasing the plan and a lack of communication from
@DHSCgovuk
@Helen_Whately
make a mockery of our efforts.
So
@eleanorhayward
@thetimes
are reporting that the Interim Delivery Plan for ME/CFS is now open for consultation.
But there's nothing on the
@DHSCgovuk
website.
And the plan hasn't been sent to members of the working groups who helped develop it.
Seriously,
@Helen_Whately
?!?
Bravo
@unibirmingham
!!
Staff who are
#UnpaidCarers
will now receive one week's *paid* leave, in addition to the one week *unpaid* leave that is a statutory entitlement for carers in employment.
A really powerful way to recognise & support carers across the university.
100 GPs were online last night, learning about suicide & homicide risk in
#UnpaidCarers
.
GPs are the first point of contact for many carers, so it’s vital they know the risks & how to help.
Thanks so much to
@nhsbobicb
for inviting me to speak.
#PrimaryCare
#NHSThinkCarer
I vote
@TheGreenParty
not because I’m middle class, but because I believe in social justice.
And I’ve seen firsthand the positive impact of
@Greens
in Oz.
I also vote 💚 because Ben, my MP, has consistently failed to engage with the social justice concerns of his constituents.
So touched to receive an
@UniofExeter
Above & Beyond Award for my curriculum development & teaching this term. It’s great to be recognised in this way, but the glory belongs to my
@ExeterMed
students. They’re so awesome it would be hard not to be passionate about their education.
A fabulous turn out for our final
@ExeterUCU
St Luke’s Picket. Wonderful colleagues, beautiful babies, amazing students, balmy temps, & glorious sunshine. All we need now is decent pay, pensions & working conditions!
#UCUStrike
#UCUStrikes
#UCUStrikesBack
@ucu
@leicesterliz
@BBCr4today
The repeated use of the word "visitor" is part of the problem. Many families are actually carers & when they "visit" they provide significant care. Care that isn't provided by staff. The gov't need to acknowledge that in denying families access they're denying residents care.
Today marks 7 years since I moved to the UK.
But apparently integration is still a work-in-progress...
because only this week did I learn that Brits call these 'worktops' (and look at you very strangely when you call them 'kitchen benches').
Just found out my wonderful students have nominated me for another award.
What is it with this bunch?!?! Are they deliberately trying to make my mascara run???
Seriously though, I'm blown away and feel blessed every day to play even a small part in their incredible lives.
The UK is now in lockdown & I've never felt less like teaching.
But I've told my students Zoom classes are still on, even if all we do is have a good cry.
I may not be able to help them practically, but I can be there, I can listen & I can let them know they aren't alone.
When a carer kills the person for whom they care, the official conclusion is usually “an isolated tragedy that couldn’t have been predicted or prevented.”
But our research is finding that warning signs are often missed by professionals who don’t get the reality of caring. 🧵1/
I hate turning students away, but I love that one of the
@ExeterMed
modules I've created is so popular it has a waiting list. Seeing students so interested in ethics really gives me hope for the future of humanity. Now to figure out how to create more places for next year!
@DrFrancesRyan
I offered my input to journalists reporting on this case, having led research on carer suicide & homicide for more than a decade. None have taken it up. These are not isolated events, they can be prevented, and journalists could help by engaging with the evidence & experts.
I got some very positive reviews back this week on a major grant application & have cut my holidays short to respond to them. Regardless of whether or not we get the funding, it's incredibly heartening to see reviewers recognising the importance of research on family care.