service user activist,mental health, disability, welfare issues, committed to participation, UEA, Essex and Brunel University London, Co-chair Shaping Our Lives
so the Labour government is planning to get rid of the house of Lords and tax private schools. ok but why not do the things that actually matter like redistribute wealth, get rid of the DWP and reform social care properly??
disabled people will die as a result of what Sunak is planning to do. we can say that with awful confidence. time that powerful others speak out against this systematic and planned killing.
assisted dying and Covid clearly not enough for you Mr PM
why do academics think it is ok to expect service users and others be involved in research without the choice of being paid for it, when they themselves expect to be paid. More on this recent experience shortly.
even if the tories are beaten at the general election and their latest proposals to oppress disabled people don't see the light of day, what can we say about the people who have developed them, what kind of terrible discriminatory people are they? where will they go?
im not a busted flush trying to divert attention from my own dishonesty by jigging up a war am I?
Johnson now saying Russia plans biggest war in europe since 1945 - anything to save his squalid little hide - including all our deaths
shocking news the police have decided they will no longer attend mental health issues.
so who will?
who has decided this - the police or the government
this is a disaster at a time of terrible mental health cuts
can i ask sister and brother tweeters does our present politics make you feel really depressed and miserable. they do me, i just wanted to see if this is the same for other people. not a good feeling.
There is nothing to stop Esther Rantzen killing herself, no law, no code.
can you imagine what assisted suicide as a policy will mean under a government like ours, attacking older and disabled people constantly?
user involvement and public participation have been the focus of what i do for 40 years now, this is my anniversary. I wish we could make more progress, but we should still be proud of the changes we have been part of.
I see the Guardian has apologised for comments it has made about David Cameron. When will some of its columnists start apologising for their unending and unevidenced attacks on Jeremy Corbyn??
This is for everyone out there who doesn't enjoy Christmas for whom it's a hard time. Wishing you the best, hope it passes ok and take care of yourself x
so proud that yesterday one bright spot; daughter Ruth passed her Viva for PhD with minor amendments. well done you and all others in a similar position. such stress, such an achievement
this week i will be preparing for World Social Work Day. important we do what we can to protect a positive social work so it doesn't go the sad way of probation. please like if you agree. This is so important for so many disempowered people
just been reading on a Facebook page people talking about how wonderful the old days were 'although we had nothing' and kids today don't know they are born. What a load of bollocks today's 'kids' in my opinion have a really tough and complicated time. What do you think?
PhDs are essentially one person approaches to the production of knowledge.
Now this has been changed by recognition of importance of participatory approaches to research
when will the rules of PhDs change truly to recognise such collective endeavour??
Just wanted to wish everyone a safe and ok break. I know that this is a difficult time for some people so hope it's as ok as it can be. all very best from your twitter chum x
What a wonderful festival day May 1st. Always been so pleased it is also my Birthday!!! Happy Birthday to all those other people who share this birth day xxx
HE SHOWED WE CAN MAKE A DIFFERENCE
just heard the sad news that Prof Mike Oliver the initiator of the life changing social model of disability has died. this wonderful idea changed the lives and consciousness of many thousands. millions of disabled people. RIP Mike we owe you.
there is only one way to break the divide between researchers and researched; that we make it easier to cross between the two roles and recognise the overlaps between experiential and academic knowledge.
I am so proud as one of her supervisors that survivor researcher Jasna Russo has been awarded the Vice Chancellor's prize for Doctoral Research at Brunel University London for research excellence. Who can say survivor research isn't coming of age. Yippee!!
@NSUNnews
@Solnetwork1
Official figures. Benefits Fraud runs at one percent. Claimants are oppressed and driven to suicide. Covid support schemes defrauded for 13 billion pounds and little or anything done
Private Eye.
Really hope in the big rounds of research calls re Covid19 we can get a reasonable proportion of user led and coproduced research. Instead of a research feeding frenzy we need real community involvement and equality
#Covid19
Two things i can't believe how bad things are. 1 the media adulation of our Prime Minister post his illness after he left us to it and 2. the appalling neglect of those with virus in residential homes and those working in social care
#COVID2019
you know as i watch traditional local and national charities become more and more useless, bureaucratised and modelled on neoliberal managerialism i wonder if the only answer is to get rid of them and start again with user led and disabled people's organisations.
What you think
DWP phone woman with serious dementia for whom review of benefits being sought. How are you. 'Not too bad' is all she remembers saying to them.
This isn't an absolute abuse of human rights. What is then?
As I shall be in bed long before midnight to ease my creaking bones, here's my chance to wish all the tweeters I follow and who follow me a HAPPY NEW YEAR. We could certainly do with it!!! love all xxx
EVERYBODY our there who has been liking and sharing my election tweets and blogs. thank you. maybe you are now feeling as gutted and awful as i am. this really is a time for hugs - which i don't normally do! love to all out there x
Is anyone else out there like me daring to hope that we may just may be at a political turning point putting an end to the last nine years of right wing extremism and cruel government?? please shout out if you do. living in hope!!!
Labour saying that NHS too often run for doctors not patients
get real Labour its being run into the ground for privatisers and profiteers and you won't break with them.
Captain Tom's charity raised tens of millions£ which people then didn't know what to do with. time we seriously reassessed this kind of aimless charity and turned instead to supporting small user led organisations that make a real difference.
@johnpringdns
I've now received a formal phone call and email from CQC who have seen what people have seen on twitter and now assure me in general terms that they definitely want my involvement in accessing user and carer voices. I await specifics and what that means for inclusive involvement
All FREE to download
This is not only something we are proud to be associated with it also encourages a whole new generation of involving lived experience in social work knowledge and beyond. well done everyone x
we owe the breaking of the post office abuse story entirely to Computer Weekly and Private Eye in association with the brave hurt people involved. its another example of the failure of the compliant media
the big issue for me is how can we make involvement and coproduction as real and nontokenistic as possible in terrible neoliberal political times so they are a challenge to them not a reinforcement?
What do you think. please RT and Share thanks
I've just been dissed on twitter as
'promoting cause of antisemitic politics enabler Jeremy Corbyn'
As i have said to her, don't you dare accuse me of anti-semitism as a Jew whose grandparents fled pogroms to live a life here
ALL SOCIAL WORK STUDENTS
Check out FREE to download 50 articles from the British Journal of Social Work's 50th anniversary tracing its development and i am pleased to say valuing service users, our knowledge and potential role in social work
Could i suggest that everyone who thinks it is wrong of me to argue for a peace process for the Ukraine war and tweets nastily accordingly, puts their money where their mouth is and goes and joins the fight. might be more useful to Ukraine than cheap flag waving jibes
Today i am starting my new role working on the involvement theme in the NIHR ARC programme in the East of England based at the University of East Anglia, Thanks to my new colleagues but thanks also to those at Essex University, always supportive who i will continue to work with.
Participation, user involvement, has been the main focus of my working and campaigning life, yet i realise that there has never been such a time of ambiguity, subversion and tokenism as now. Surprising No, but how we deal with it, that's the question. All answers most welcome!!
Not a word about social care in a hopeless budget speech. A green paper announcing further delay; nothing on working age disabled people and no disabled people among 'expert group'. Situation normal for this govt which has no interest in key policies like care
Im v proud to be part of the project thats led to the Routledge International Handbook of Mad Studies. But as Ive also shared here im concerned about the very high price of the book and how we can bring its contents to more survivor. Please share and retweet and like if you agree
today i definitely feel depressed, so here's wishing everyone else with that feeling the best and hope things soon look up for them. At least the sun has just started to shine!
re the social model of disability. no one ever said it was a cure-all, resolved every issue and was like a religion. But it is probably the one most helpful idea of modern times that has helped liberate us as disabled people and that's why i value it.
@Solnetwork1
Just heard about young people in one area having to wait nearly two years to access CAMHS support. if the system plays its cards right by the time they get it they won't qualify any more as young people! problem solved. what a world!!!
Today after delays and making sure her quality of life had not been painful for her, the time came after putting it off, to take our lovely cat Bubbles to the vet for the last time. Such a lovely cat never bit or scratched anyone, RIP Bubbles xxx we will miss you
social care should begin at home says Javid at tory conference -wrong to rely on state
what does he think millions of family carers are doing now?
meanwhile they plan to raise council tax even more
I'm proud to discover my first article in British Journal of Social Work was published in 1975, Vol 5, No 2, pp175-192. and my latest TODAY with some great colleagues this time. that's a spread of 47 years!!! and it don't seem a day too long!
So Priti Patel now threatens according to tabloids to 'lock up the eco mob'.
that is people peacefully protesting about the frightening environmental future for our children are to be oppressed - oh and that's a nice Daily Mail diversion from no hope of US trade agreement
FEAR
we need a completely new approach to supporting and funding voluntary sector putting an emphasis on user led organisations rather than starving them of money and giving most money to useless big corporates and their overpaid CEOs.
so pleased to be part of a group which has had an article accepted by the BMJ re the coproduction of global health research. YIPPEE feels like another important breakthrough, will keep people posted. please RT and share
just had another request from a research organisation wanting me to do work for them for free as a service user, which doesn't seem to recognise you can be based at a university and be a service user!!!
not very reassuring is it.
this is another of those issues to be unhidden
today doing some serious thinking about the way older people tend to get left out - left out of user involvement, recognition of diversity issues, pretty much everything. what do people think and how can we work best to challenge this? all ideas valued
Will no media break ranks and raise the question of how Johnson's personal condition is being used as a press diversion from the appalling mess his government has put us into with Covid-19 with enormous loss of life and suffering?
#COVID19
who like me thinks that the problem is not a threatening under class, but a powerful, really destructive and damaging OVER CLASS which is grinding us and this country into the dirt??
PLEASE SPREAD THE WORD, SHARE AND RT THANKS
The government is spending more than £60million a year fighting disability claims even though it loses 3 out of 4 cases at tribunals. Today's Private Eye
HOW MUCH LONGER WILL THIS CRUELTY AND WASTE BE ALLOWED TO GO ON?
Just helped paramedics take my mother in law to hospital after bad fall. Typically they are kind and competent. Beating heart of what's best about nhs
#COVID19
my family, friends, people around us, in cafes, gutted by the election result. I am just hoping I can not allow it to make me feel crushed. That's another result for them. Wishing everyone out there with similar feelings all strength x
it's been NHS, NHS, NHS, because this government knows a winner every time. But Covid 19 has really been all about social care, social care, social care. and that's one of the many reasons so many are dying -for which this govt is responsible.
#Covid_19
SPREAD THE WORD there's about to be a special issue from service user perspectives of the British Journal of Social Work, please WATCH THIS SPACE, SPREAD THE WORD AND SOON LINK WILL BE AVAILABLE. THANKS ALL
Today was my mother's birthday and tomorrow my sister's, both of them no longer with us. Can i just send all my very best wishes and thoughts at this time to others dealing with the loss of loved ones, especially parents, siblings and partners. xxx
went for a little run today and i do mean little and a jog rather than a run really but first for literally years, so proud of myself. here's to the next one!!!
I am writing to let people know about the sad and untimely death of Michael Shamash campaigner for the rights of disabled people, member of Shaping Our Lives and a lovely friend and colleague. Much missed is inadequate here. Rest in Peace chum and all love to family and friends x
Involving people with lived experience in policy, research and services only has meaning if our ideas, models and insights have equal value otherwise we are just incorporated into the old theories and disempowering practices.
@Solnetwork1