Saving Cascaidr – a guest blog by founder, Belinda Schwehr.

I might not be the CEO of CASCAIDr any longer but I can’t stop caring about it, and the crisis in the advice sector!

I want to highlight the cost of offering decent legal advice about adult social services disputes, so that people understand why we’re currently closed.

A bit like when one goes to A&E, people are often distressed and not particularly organised about making a referral, with little idea how to order their story. They maybe haven’t got the words, or they’ve been battling the system for months. They may be damaged, pessimistic or strung-out about having to go over it, all over again. But we’re online, only, apart from reasonable adjustments, so we have to expect people to get their story down, somehow.

Just like at A&E, you’d want to find someone there who knows the difference between a Conversation, an assessment and a care plan, wouldn’t you? Between a direct payment to the client and one to their Authorised Person instead? Between CHC and s117 or a split package? Between Choice of Accommodation and Continuing Ordinary Residence? Between a tenancy and a placement?

Community care law is not taught in universities. The only places such lawyers are found are legal aid law firms and local authorities, or other charities. Most CABx don’t cover this area of law.

Even if a lawyer is happy to work in a charity that isn’t a law firm, they’ll have bills to pay.

They’ll have spent YEARS acquiring expertise and honing the skill of unpacking a referral, figuring out whether the person is stuck somewhere in the Care Act process, or elsewhere, due to housing, special education, primary health need or mental health issues.

That set of skills has a market price. In the real world, scarcity invariably puts the cost UP, or people move OUT of the field altogether if they’re not decently remunerated.

Putting someone into a Triage/casework role at CASCAIDr, with those skills, requires £55K, plus oncosts, plus a proper contract, before anyone will move roles into the charity sector.

Even that ONE person will need IT systems/management, regulatory fees and licences, insurance and an administrator, so they can concentrate on law. They must balance the rate of work coming in against the staff they can pull in to take on the growing work.

So we can either chase grants, fund-raise or sell other useful stuff, if we are to remain viable, without charging people for advice.

That requires more bodies with brains and legal acumen. Volunteers of any kind can be taught community care law, but need managing, because whilst highly motivated, they work remotely, and their output needs supervising.

That’s why CASCAIDr needs a sponsor, right now, if we are to survive (please email if you know of someone who might grasp the enormity of this field of expertise just dying out…)

Or donations, please, via our site on

Books, a laptop. Glasses and justice scales

‘Same As Any Other Day’ by Vic

First Christmas in psychiatric hospital.

We signed in and we told we have one hour to visit due to other parents also booking in and staffing levels being quite low.

The visitors room it’s freezing cold and a staff member sits at the door at all times with the door open. We are taking a huge bag of presents and cards all carefully chosen to comply with Ward rules.

As we leave it I am overwhelmed with sadness. She stands in the window waving goodbye to us. They won’t let her home at all,  the risk is too great , yet they discharged her just five weeks after this.

We go home to an empty house with no tree. Christmas isn’t welcome in our home this year. We head to a friend’s for a bite to eat and my mobile rings she’s on her way to A&E she’s eaten one of her Christmas presents and it wasn’t edible. They are dealing with it we don’t need to go.

Christmas on a psychiatric unit is the worst. Loads of familiar staff are away and locums are in and bank staff. They refused to let her go outside for days over Christmas due to low staffing levels or it was too rainy or it was too cold. They stuffed her full of sedatives and vitamin D tablets instead.

Paper chains are allowed and a basic Christmas tree but Christmas tree decorations are generally unsafe..

Many of the patients have gone home so its Christmas Dinner and loads of films ( same as any other day ) and then some card games and maybe the wii fit.

Christmas Nuts, a guest blog by Anwen

It’s Christmas Day. I’m in hospital about half an hour away from my parents. I’m in the small visiting room. On the squat table sits a cardboard box of presents wrapped in black and white cat wrapping paper. I am taking fat fistfuls of Mark’s expensive fruit and nut selection and cramming them into my mouth. We have an hour and a half with each other before we have to go and the next family is allowed in, since my parents never go on the actual ward. There’s a healthcare assistant sitting in the doorway. Kicking her legs bitterly. Like she has been given the shit job.

This Christmas I will not be allowed to go to church. My parents show me through the presents like a walk in a beautiful forest. One by one, each a little piece of love. soft felt slippers, pink and gray, a self-soothe box full of sensory toys, a 5 seconds of summer coloring book (Staples carefully removed), nail varnish remover pads to be used under careful supervision (except they weren’t.) and my beautiful dog coming into the secure garden for snuggles. I do not even have a grounds leave so this is a huge treat.

Christmas dinner will not be a family affair. Most of the other children are at home but I am taken back to the unit after my designated time is up. I am wearing my emerald green marks and spencers jeggings and my new slippers as I trudge back through the airlock, arms full of goodies, most of which will have to be locked away. My tummy is full of fruit and nut mix and my mood is somewhat stable and that is my first Christmas in hospital.

Rightful Lives Statement on the Government’s response to Baroness Hollins’ report on the use of solitary confinement for autistic people and people with learning disabilities.

This statement can be read below or listened to as part of this video:


Three members of the Rightful Lives Admin Team have, over the past four years, been part of Baroness Hollins’ Oversight Panel, tasked with looking at the use of solitary confinement in psychiatric hospitals.

We have heard some heart rending stories and been appalled at the ongoing human rights abuses suffered by autistic people and people with learning disabilities. Basic needs are simply not met, abuse is rife and people face being totally dehumanised by their experiences. And as fast as people leave solitary confinement, other people take their place.

We were pleased to be able to contribute to Baronesss Hollins’ report and recommendations and we made sure that people at the Department of Health and Social Care, NHS England and the CQC were aware of the abuse and injustice suffered by members of our community. We were also pleased to hear of the successes of the HOPE(S) program and the senior intervenor program, but there is now no guarantee that these powerful initiatives will continue. It seems that things that work are just abandoned.

Not for one minute had we envisaged that the Government’s response would be as ineffective and insulting as it has been. We were led to believe that the Department of Health and Social Care was taking this issue seriously.

As autistic people and family members, we are accustomed to being asked to share our knowledge and expertise only to have that ignored or watered down. We invested our time and energy in this work because the Secretary of State for Health and Social Care appointed a Peer with expertise to make recommendations for improvement. We expected Baroness Hollins, and therefore us as an Oversight Panel, to have our recommendations taken seriously. It seems that this government would rather throw money at delaying tactics than actually take any real action. Our concern remains with all the people who remain in solitary confinement because this government does not care enough to make the changes needed.

Not only has the government proved that they really don’t care, their response has merely given permission to hospitals, practitioners and commissioners to carry on as normal. All of this is so unfathomable when we know that care in the community is so much more cost effective and rights respecting.

Solitary confinement is toxic, inhuman and degrading and frequently in breach of international and domestic law and guidance. There is little or no accountability when services fail people. Quite frankly, we are furious that, with more people than ever subject to enforced isolation, the Government doesn’t appear to be in the least bit invested in doing what works.

Please Take Me Home – a post from a member of our UK community.

Silhouette of a girl sitting cross legged alone in the dark.

Panic attack, 4am. The 4th this week. Where is she? What is she doing. I imagine her angelic face buried into the hospital issue pillow, praying she is sleeping. Sending my angel to hers asking them both to wrap their arms around her. I won’t sleep now like the hundreds of nights before. I clean the house, anything to keep thinking about what has happened to us. It’s a parental nightmare.

26 months in ATU. The threats they made at the start were real. We spoke up, we let others know and they fought back with endless amounts of money to divide and conquer our family out of pure spite. For 21 years we never asked for help. They didn’t offer help either. Then one day our daughter needed help. What a mistake to ask.

The psychiatrist is a sick one, probably mentally messed up himself, is on a power trip after we challenged him and others about the prolonged detention, akin to prison. The others followed including the social worker whose bones are made of willow, bending to the whims of his masters just to keep his job. So much for looking out for the rights of my daughter.

Our beautiful, autistic daughter institutionalised now. Eats her meals with a wooden fork, paces up and down a corridor with no access to others except nurses who, when they are not injecting her with anti-psychotics, all know how horrific the situation is but dare not speak up. (except for one who agreed her situation is a travesty).

Two years in a psych ward. Secluded. Never been home. I asked the psych what ‘behaviour’ he would present with if he was my daughter,. I tell you no word of a lie, he laughed and said she ‘was getting good care’. My older son told him to f**k off. That was the start of it, the campaign against us. If you are not aware of the power these people have, I suggest you inform yourself.
It takes every ounce of will and energy to visit my beloved daughter now. “Please take me home”, coupled with “I shouldn’t be here” are her plea at every visit. She is chemically restrained, her head is down, her speech is slurred, she walks like an 80 year old with dementia. What can I say? We have no control. Her father is destroyed, her siblings don’t know what to say. Our house is a place of sadness and darkness, the heart has been ripped out of our family. How can the world not know what is going on in these nightmare holes of hell? Where are the human rights advocates? Where are the autism charities who turn a blind eye? Over 2000 locked up for something they didn’t do.

Our family is forever changed. Once I had a daughter, the centre of our family, most beloved, smart, quirky, funny, creative, happy. She is still my wonderful daughter but she is not who she used to be.
She turned 21 with no support in adulthood, things deteriorated. Asked for help. They took our daughter because we asked for help. We are being treated like defendants in a criminal court case. If you are reading this and you think this couldn’t happen to you and your beloved child, think on. We were that family. This very day, another family is experiencing the inconcievable heartache we feel. Can you imagine going into the jungle and a wild animal attacks your child? That is what this is like. It’s not going to go away until EVERY family speaks up and demands justice. Can you do that? If not for my daughter, do it for your own children or your children’s children.

My daughter is autistic. She committed no crime.


Psychological Restraint – a rights based framework

Psychological restraint is any kind of communication strategy that puts psychological pressure on people to do something they don’t want to do or stop them from doing something they do want to do.

Communication strategies might include verbal pressure (e.g., threats), non-verbal pressure (e.g., eye rolling, tutting etc.) and systemic pressure (e.g., being detained, locked in a hospital and feeling you have been made powerless by the environment).

Psychological restraint is probably the most common type of restraint but is not well known and spoken about, so it is difficult to challenge.

Many people that use the Rightful Lives Facebook group talk frequently of being made to feel powerless by the system and unsupported. They also talk about things such as:
• being observed on visits and intimidated by staff sitting with a paper and pen
• feeling as though they can’t challenge their loved ones’ care for fear of being ‘punished’ or ‘things being made worse’.
• their loved one being threatened with not having leave etc.

Psychological restraint, like other types of restraint, can breach peoples’ human rights. Psychological restraint is traumatic and results in poorer treatment outcomes.

The document linked below explains how psychological restraint breaches people’s human rights and will enable you to make effective challenges. Thank you to Salli Midgely and Sheffield Health and Social Care NHS Foundation Trust for agreeing for us to share it.

Click on the link to read it.

Psychological Restraint – a rights based framework



Rightful Lives’ response to the Metropolitan Police Force’s decision regarding mental health crises

In this video, Rightful Lives’ Alexis Quinn looks at the implications of the Metropolitan Police Force’s decision not to respond to mental health incidents that are not seen as immediately life threatening, disproportionately impacting neurodivergent populations.

We believe that the police have duties under the Human Rights Act and the Equality Act which they are unilaterally setting aside before alternative services are in place. And we wonder if NHSE and ICBs will step up to provide those services because people will not be safe. Police have a duty to protect lives, even neurodivergent lives. They are the only ones that can convey using legal s136 powers.

We have asked NHSE, the Ministry of Justice and the Metropolitan Police Force to issue statements about how distressed neurodivergent people will be kept safe (and not criminalised) in the light of this development.

Watch the video here:

The Road to Dispatches – a guest post by Amy Eastwood-Grimes


I came across #rightfullives in May 2022 originally through Facebook. Aside from the continuous incredible support and advice it was lovely to find new friends and become familiar with people who share the same or similar struggles aswell as heartbreaking to see that so many people could relate or I could relate to them. And to hear the stories. Despite all, rightful lives brings us all together as one big united front all fighting the system together and supporting one another through it. I’m so glad I came across this group and wished I found these incredible people sooner. The work the admin team do is also incredible. If you have seen my posts in the group and supported me then you may also know and have probably seen the latest dispatches episode on Channel 4,

LOCKED AWAY: Our Autism Scandal!

If not and you either want to educate yourself on the ongoing crisis autistic individuals like myself are going through with the broken mental health system it would be great insight to do so, Or just to feel less alone, along with the plenty of other documentries I recommend that are similar to this matter. This is an ongoing problem and has been for too long now. Things aren’t moving as they should have or at all really with healthcare and although buried deep and covered up, these asylums are real. It happens more than you know, everyday. Right now there’s thousands of people out there who are silenced or aren’t able to say what’s happening to them. The numbers are only rising Amongst us who spoke out in the documentary We are just a handful of individuals and the documentary shows only a snippet into our lives as autistic inpatients trapped in a far broken system crambed into a 30 minute episode.

I’m don’t regret taking part and will continue to fight against the system for all and our life beyond breightmet (ASC Healthcare), littlewood, Cheadle and the thousands of other inadequate hospitals out there both abusing and neglecting autistic people all over the country in all kinds of ways possible.

But I would just like to thank Julie Newcome and the rightful lives team & everyone participated in the groups. Because without Julie, who actually was the one who put me forward to the director Richard & his team, I would still remain silenced and most likely stuck at breightmet centre in Bolton, so in a way you all saved me and I will forever be greatful and show my gratitude. I cannot thank you all enough! 

I also encourage others that if you can find the time and courage to do so, please do speak out if you can because like I said at the end of the film “if we don’t speak out no one will hear us and we remain silenced”.

Please make sure to follow Rightful lives on Twitter for their continuous great work that they do and to keep up to date with it all. And I recommend joining the Facebook group too for the best support and to know some of the bravest, kindest people & families who will no doubtly have experienced something similar and offer you great support with whatever you are going through! Joining rightful lives was the first time I felt listened to and less alone in what has been the worst & most challenging experience of my life. I will never forget all of which was there for me during this time. And if you want to keep up to date with my individual story I post alot on: 

Tiktok & Instagram @amyjayeastwoodgrimes

Twitter: @EastwoodGrimes. Also the lovely Katy who was too unwell to take part in the show Twitter: @Katy_Lauren Tiktok: @Katy_Laurenhx 

You can also follow Lauren’s Mummy on Instagram: @misslindseyj & Tiktok: @laurensmummy

 Lauren is girl who also featured in dispatches last Friday. Who sadly lost her life in the system in May 2022. Her Mum in on a battle to courageously continue to fight the system in the name of her daughter who sadly lost her fight but inspired many including myself by bravely sharing her journey. Like her equally as incredible mum fighting the system helping many others in a similar situation.

And please do sign her petition for change and use the hashtags #LollysLaw #LiveForLauren 

And last of all my thoughts are with the others who took part on the film Shaun, Danielle and her Mum, Lauren and her family! Along with my incredible friend who also did filming who spoke out about Breightmet who can’t go unmentioned in this article for her bravery and strength your incredible too. My thoughts are also with all the other warriors who we’ve lost, and all effected and their families. But like I said this goes beyond us, However We are all warriors and We have to keep fighting and supporting one another until we are satisfied. So to whoever is reading this please don’t give up, you will never be alone. Your amazing and don’t let them them make you feel otherwise. We hear you loudly, You’ve got this, We’ve got this!

Many thanks Amy Jay Eastwood.

ps (thank you for the out-pour of support that everyone has shown me this past few days since the film came out, you have all restored my faith in humanity and that there are so many kind people in this world amongst those not so much. So thanks for everything, and thanks to all my friends, family, my idols Jedward who are my heroes that I am lucky enough to have known for most of my life who inspire me, make me smile at the worst of times, and always have my back all the way, you’re super Jepic. And to my incredible mum who taught me to speak out and how to use my voice, I’ve learned that sometimes your voice is all you have in most situations, though I’m aware & have seen so many people are silenced or unable to say what’s happening to them, so I am greatful I can use my voice and make myself heard not just for myself but for everyone of us who can’t speak out. And I promise this is just the start from me). all I want is to make change and for everyone to be free and not have to go through what so many have, things need to change. Please keep sharing your story and remember this is just apart of it…

#Dispatches #Channel4 #OurAutismScandal #ActuallyAutistic #RightfulLives 

Every day is an autism day in Claire’s life -World Autism Awareness Day 2022

This piece is written by Claire Dyer- Claire writes phonetically, this means she writes the words how they sound. At first it might be hard to read for some people but if you read the words as they sound you will get used to it very quickly. 

Threw primary school claire olways had a T-shirt jumper and hoody on wot ever the wether becos claire 2 dis day 2 not no wen claire is hot or cold or wen claire is hungry or thirsty and not no wen need toilet .

Claire wos finally diagnosed with autism in 2010 at age 16 after find in it relly hard 2 transition 2 high school and cood not cope and manage eny of the work and moov in class rooms and the bells ring in at end of every lesson and lots different teachers and support teachers and 2 meny people every wer and it wos relly bisy .

Claire had startid 2 stop eat in. Claire wos eat in 2 spoons of spaghetti for dinner and tea and the dietitian sed claire need fortisip.  Dey wos disgusting and claire try tiny bit and did not hav eny moor. Sow for years claire hav loads different test like blood tests and lumbar punctures and skin biopsy and MRI and EEG and ECG and lots different scans and tests.

By dis time claire startid hav in a fear of drs nurses hospitals injections and needles and wos trash in hospital wen claire had 2 bee carry in from the car and lots drs and people say in claire has lots autism traits . Drs diagnosed claire with dementia and sed claire wood not see Claire 18th birthday 2 dis day der wos no proof on eny tests claire had dementia claire had just autism regression and depression and a big brake dawn.

Claire behaviours start get in wers and wers and claire wos run in away from every wer and every 1. Sow Claire go ferst psychiatric hospital wen claire wos 15 in 2009 in Bristol priory section 3 and der wos lots incidents. 

Claire had a feeding tube and uther young people wood set der bed rooms on fire and enything dey cood get der hands on and claire wos absolutely shit scerd and dat made claire hav moor supine restraints on the floor by 9 men and injection in claire bum 2 sedate claire.

Den llandrindod high school sed claire not a loud back bee cos it wos like a baby sitting service cos just try in 2 keep claire safe sow by dis time every 1 wos say in claire wos autistic and claire had stopped talk in selective mutism and needid full time support and personal care support.

Claire wos in pull ups in the day bee cos claire had olways bee in pull ups in the night cos claire had olways wet the bed. Den transition 2 ysgol penmaes in Brecon brilliant school but the travelling relly youse 2 wind claire up.  Sow claire behaviour wos relly bad by time claire get off the bus and in 2 school and den go hafod newydd in 2009 on section 2.  Wood you bee happy go in in a van with 3 rapid and secure staff ? People claire did not no and Claire did not no wer the hell claire wos go in .

Claire wos nursed on own ward 3:1 24/7 and Claire wos in for 6 weeks and cum out a week bee for Christmas but the hospital keep the bed open over Christmas and new year until a childrens care company from Manchester startid with claire. Dey wood bee work in 2:1 with claire 8-8 and den dey wood go and stay in a B and B and bee on call orll night.

The carers wos trained in mental health sow just restrained claire strate away and did not understand claire and claire hated hav in 2:1 support inside the family house and outside.  In January claire go back 2 ysgol penmaes but claire carers had 2 cum 2 school with claire as well. Moov back 2 Swansea in may 2010 and the carers cum dawn 2 Swansea till the summer holidays and dat is wen claire finish in ysgol penmaes a brilliant special school .

Diagnosed with autism in September 2010 and startid in a special school in Bridgend heronsbridge but agen struggle with the travel in.  Sow claire behaviour get wers and claire startid sleep in lots and lots 22 hours a day claire and den wen claire wos awake claire start be cum in aggressive. Drs cum in 2 the house and wos den start in talk about palliative care bee cos claire wos sleep in and not drink in and not eat.

in 2011 claire wos section 2 in hafod newydd on claire own ward nursed 3:1 24/7.  Claire had good day and bad days but claire relly injoyed.  Claire wos diagnosed with epilepsy and den claire section 2 went 2 a section 3. Claire had 5 staff take claire 2 hav sum teeth out under general anaesthetic.

Ty coryton orbis cum 2 assess claire but der wos a big problem and claire cood not go sow claire hav 2 go in 2 princess of wales hospital in Bridgend and hav IV food and IV fluids and a 2 day transition with 2 staff from beechwood college. Wen claire wos lie in in a hospital bed der wos 5 staff and claire in a hospital room.

In may 2011 claire wos transferred 2 beechwood college with 3:1 staff in the day and 1:1 staff by night.  Claire wos very ill at dis time and wos not eat in drink in.  Claire went in 2 llandough hospital and it wos or full claire had 2 hav B12 injections in 2 claire tummy and claire hav a big fear of injections sow hav 2 bee restrained on the bed and claire wos cry in and scream in.  Den wen claire get discharged from llandough claire go back 2 beechwood college and nurses had 2 giv claire the B12 injection dey cood see haw distressed claire wos and sed it’s not fair sow dey stop giv in it.

Der wos good days and der wos bad days.  1 of claire support staff start do in speech therapy with claire and claire speech start cum in back slowly but claire wos bored sow den claire behaviours bee cum a lot wers and claire had lots and lots of NEADs.  Doors and everything wos locked needid a fob 2 get threw orll of the doors and a different key 2 get out and der wos electric gates in 2 the outside of the college.

Claire 18th birthday wos cum in up and claire wos relly struggling bee cos years ago drs sed claire wood not see Claire 18th birthday.  Sow claire fink claire wos go in 2 die.  Claire wos in supine restraint over 10 times a day sum times lots moor a month after claire 18th birthday.

Llwyneryr AATU cum 2 do a assessment and cupl days later claire go der and get a section 2.  It wos bored no routine no structure different nurses orll want in 2 drink coffee and wantid claire 2 sit and wotch tv orll day.

September 2012 mami dadi go see a care home in Carmarthen and relly liked it and den cupl weeks later cum 2 see claire and den claire start transition claire moov in January 2013.  The grange hav a lovely sensory room. 

Claire wos 3:1 by day and 1:1 by night but a service user manage get in claire room at night lock the door and youse claire toilet.  Claire go scream in dawn sters and claire did not hav 1:1.  The staff wos sleep in in the lounge and claire do complaint but dey did not beleave wot claire say and orll the staff stick 2 gether and agree with ech uther.

Den claire wos try leave the grange and dey tied rope 2 a car 2 keep the frunt door shut.  Sow claire phone mami dadi and say claire want cum home and claire go home and never returned.

Claire care manager keep try get Claire go back 2 Carmarthen and claire say no. Claire wos at home for 13 weeks and den SBT cum 2 the house and say claire you do not look ok fink it wood bee best for claire 2 cum back in 2 llwyneryr sow claire did. 

Claire wos bored and lots different staff and claire on a section 3.  Claire behaviour get in wers bee cos claire bee in tell look in at a autistic college in Biddeford and a Psychiatric intensive care unit in st Andrew’s Northampton.

Sum 1 from der cum 2 do assessment and it wos a day claire go home sow claire go back at time.  Nurse ask Claire bee back and man had orll redy bee and look threw claire notes and had go.  After lots and lots of mental health tribunals a medium forensic secure hospital in Brighton the dene cum 2 assess claire.

Claire go 2 the dene in august 2014.  Mami dadi and solicitor manage 2 stop claire bee in moov strate away but den mami dadi nicola mam Aunty Liz go 2 court in London and the judge say if do not go tonight will loos the bed.  Sow rapid and secure 1 driver and 3 staff take claire 2 the dene in Brighton a medium forensic secure unit and claire get der about 10:30.

Der wos 10 staff in a line sow claire cood not run off.  Staff strip serch claire and with a metal detector claire go 2 the ward and claire wos with murderers and people hoo wos relly ill.  It wos the rong plays for claire orll the staff sed and signed claire petition 2 get claire back 2 Swansea.

Mami dadi nicola Andrew Jonjo wood cum and see claire every Sunday and mam dadi cum see claire every wensday.  Sow after lots of prone restraints and lots of sedative meds and injection in the bum after 13 weeks claire cum home 2 Swansea.

In January 2015 claire start transition 2 NAS day service in Neath. Der wos lots good day and sum bad but claire relly injoyed and had 7 hours a day 6 days a week 3:1 staff and go swimming and do woodwork and cooking and bike ability and loads moor.

Claire go on respite for the ferst time in October 22nd 2015 a year exactly 2 the date claire cum home from Brighton and had about 6 respite in bluestone and Bridgend and NAS promise claire own residential home but do lots of planing but it orll fall threw cos cood not moov the uther residents out of the house.

Claire not good and strop with mami dadi and orll family and MDT and not talk 2 eny 1 and claire get admit 2 hafod y wennol in pontyclyn for 4 night 5 days and had lots support every day from day service and with lots of planing meetings.

Claire had orll the rest of claire teeth out with 6 staff and management from day service and orll of ABMU PBM trainers in princess of wales hospital in Bridgend.

July 2018 and dat wos the last day claire had with NAS day service. Claire still keep in touch with sum staff naw.

September 2018 perthyn start transition and but it did not work and perthyn stop supporting claire .

November 2018 claire hav a good Pa amy and claire relly injoy do in arts and crafts and playing games in the night after amy finish work .

2019 claire hav 3 moor direct payments But only fing is you can not get 2 direct payment staff dat work part time with claire and full time els wer 2 cum the same time and same days is impossible.

Covid 19 March 2020 claire keep do in lots walk in with dadi and Archie and arts and crafts with mami and shopping with a mask on with dadi. 

December 2020 mami sed wood claire youse a indoor mini trampoline. Claire say yes and sow order 1 claire start do in 2 miles and hav naw get up 2 12 miles in the morning. Wen claire awake bee tween 4 and 5 and dadi gets up with claire .

November 2020 claire start ask in for domicilary care. M and d come 2 do assessment but say cos covid and claire need consistency from a 2:1 staff team and pbm and Claire’s complex needs dey cood not provide a service.  Den claire social worker get involve and cartrefi cymru. Swansea cum back and say dey cood provide a service sow MDT and SBT do lots of training and PBM training.

March 1st 2021 2:1 staff and start with tiny baby steps and small steps and naw claire hav 2:1 3 hours Monday wensday Thursday Friday and 7 hours on a Tuesday and claire is relly relly injoy in do in lots of walk in and climb pen y fan and hav been 2 Bristol zoo and folly farm and do in lots of exercise and swimming and trampoline in.

In February 2022 claire and cartrefi staff go on respite 2 ty tanglwyst farm and it wos brilliant and hope in for lots moor respite and hav in lots moor fun with cartrefi. Claire hope claire hours can keep go in up and dat 1 day claire will hav own home with cartrefi supporting claire 24/7.

At the minit claire relly in joy in walk in with dadi and Archie 6 miles in the morning and go in out with cartrefi and claire still hav amy cum 3 times a week. In the last month 2 of claire PA hav leave sow just hav amy as a PA.

Claire is autistic and proud xx sum days is brilliant sum day is good and sum day is bad and sum days is horrid but with the right support claire is relly happy and Claire’s mental health is beta dan it hav bee for years.

Claire is 28 years old and is autistic with learning disabilities challenging behaviour and NEADS. Claire has 2 dogs at home Jonjo a jack russell hoo is 8 and Archie a jackshund a jack russell cross dachshund hoo is neely 3. Jonjo do not like walk in far but Archie will walk miles and miles.

The 2 dogs Claire like 2 call Claire companions. Claire is not thick or stupid sow please do not talk or wispa about Claire in frunt of Claire.  Or if need talk about Claire inclood Claire.

Claire like keep in bisy Claire like walking miles and miles trampoline swimming shopping cooking bikeability arts and crafts woodwork pottery.

Claire live at home with mami dadi Nicola and Andrew and 2 dogs. Claire love Claire family lots and Claire has good friends.

Claire is very clever in Claire own way. Never lie to Claire. Never bee scared of Claire. Please Trust Claire coz Claire never want to hurt anyone or anything.

Wen Claire is good Claire is very very good but wen claire can not cope Claire is bad and horrid. Claire never try bee bad or horrid. Claire finds things hard and can’t cope on times and fingers crossed Staff can bee there to help Claire cope when things get difficult xx

Claire need 2:1 staff to help keep Claire safe and help Claire and in a meltdown. Claire needs staff to intervene to help calm Claire.

Claire wood like own safe proof bungalow with a drive and a lounge a bathroom a kitchen a garden with a swing and 1 staff sleep room and a bedroom for Claire and a room for a sensory room.

2 pictures is from staff dat youse 2 work with claire say in wot dey hav learn from claire xx


Outpatient Appointments in Adult Medicine

What’s it like? I hear you ask.
What happens? I hear you ask.
This is our story.
Both myself, Julie, and my husband, Samuel, are autistic. We are adults. We are in our thirties. I regularly get asked to attend outpatient appointments for different long term health conditions. Both myself, Julie, and my husband, Samuel, attend together because I like to know another person is there witnessing the appointments.
Before the outpatient appointment I ring ahead. I let the department, which ever one it maybe, know I am autistic and would like a double appointment as a reasonable adjustment to allow me more time to process the information.
On the day of the appointment myself, Julie, and my husband, Samuel, arrive at the reception we are often told the reasonable adjustment was rejected and it is only a single appointment.
We are called into the room with a consultant. The consultant has managed to be told I am autistic. Straight away the consultant turns to my husband and begins to speak.
Asking why is she here? Why has she been referred here? And often who are you?
My husband who finds speech hard manages to mumble I am autistic too.
The consultant stops.
The consultant looks at us both.
Then the questions begin again.
Why are you here?
I begin to explain.
How do you know that is a symptom?
I begin to explain.
But you have autism how do you know it isn’t just your mind playing tricks on you?
Here I stop. I pause. I freeze.
I begin to doubt myself. I begin to question myself. In side I am in knots.
The consultant continues talking but I am frozen inside. I no longer hear a word. I glance to my husband his eyes tell me he too is frozen. Lost for words. Not sure what to do. Dithering inside like me.
We are both stuck. Here in a room with a consultant who clearly doesn’t know much about autism and has an opinion of what autistic people are like.
We leave the room disheartened and confidence thwarted.
The scenario I have described above is sadly a regular occurrence in our life. It is rare we experience anything else.
We support one another the best we can but there are times when we are both lost for words and only our eyes can communicate with one another.
We do not have anyone else who can support us. We are deemed as able to manage as we have one another.
So back to the opening questions.
What’s it like? An outpatients appointment in adult medicine is distressing, overwhelming and judgemental.
What happens? Assumptions are made about your ability because you have disclosed you are autistic.
It seems disclosing you are autistic means all your symptoms are silenced and you are left to feel like you are a time waster. It leaves both me and my husband wondering why we make the effort to try to speak and why we make the effort to describe symptoms when they appear.

An Open Letter to Claire Murdoch and Ian Trenholm

Dear Claire and Ian,

Re proposals about using CCTV in ambulances

I apologise if you find the tone of this letter inappropriate, but I find what I am having to respond to in the contents of this document I was reviewing for work, ‘inappropriate’. I assure you my views are considered.

Every week, I sit in various meetings with people such as yourselves, who have the power to change things, and I ask the same question, “How do we know autistic people and people with learning disabilities in long term segregation are safe?”. Every week, I watch people roll their eyes, ignore me or give me a half smile.

This morning I got a message from a friend of mine who is in long term segregation. There are almost 100 people in long term segregation. The person concerned has been there over a year – in a room, with only a mattress. The person is watched 24/7 on CCTV. They hate the CCTV. They see it as breach of their Article 8 right to privacy. They are right. It does breach their rights, but, for some reason, CQC allow it.

Anyway, I am assured that this person is safe. But this morning I find out they aren’t safe, exactly as I have told you, time and time again. They’ve been subject to sexual abuse for the last eight months! Eight long, horrifying months of abuse!

Guess how much of it was caught on CCTV? None of it!

Now this isn’t surprising is it?! Whorlton Hall had CCTV in it. Many units I was in had CCTV. The only thing that CCTV was ever used for was to criminalise. CCTV criminalised my friend – it didn’t save them from abuse. Instead it abused them.

And now I find you plan to ‘watch and record’ us while we travel in an ambulance when we are at our most vulnerable. How would you like to be recorded, for everyone to see, when you are at your worst?

You see last week, I read a document about changes to ambulance transfers to make them better… one of the main solutions was to record us on CCTV. What a joke that draft document is.  Here’s why.

First of all, I’d like people to stop talking about me/us like we are a parcel out for delivery. Change the language to reflect the fact we are human.

This is a cage you transferred me in.

Second, there is nothing in the document about how autism or learning disability will be considered or supported. We make up a huge amount of the population of inpatient services. We spend the most time in hospital – usually more than 5 years. We are often transported hundreds of miles away from home. Why haven’t we been considered?

I was transferred probably more than 50 times. I have had to sit in a cage in those ambulances. I felt like a dog being taken to a dog pound. My legs were tied together, my hands cuffed behind my back, trying desperately to remain seated on a narrow, wooden bench, no seat belt. I’ve had to shit myself and piss myself and then sit in it for hours because you wouldn’t stop for me to go to the toilet. I had to sit with a bright light shining on me, cage rattling up the motorway experiencing the most awful and painful sensory overload because you didn’t consider my autistic needs, let alone my human needs. AND NOW IT IS SUGGESTED THAT THIS BE RECORDED ON CCTV? Seriously.

Yes people! The NHS and CQC want to install CCTV in ambulances! They want to record what I’ve just described. Apparently, the CCTV is being installed for our own safety. It didn’t keep me safe, it didn’t keep my friend who has been locked in a room for a year safe.

What will happen is that the CCTV will be used to threaten us and criminalise us. My friend above has been criminalised, but their abuse went unnoticed. When they, or I, or you kick off because we have been subjected to inhumane and degrading treatment (in our most vulnerable moments), staff can call the police and show them what bad people we are on the CCTV. And even more, when the CQC come calling, staff can show them some contrived scenes especially acted out for the benefit of CCTV that show what lovely, caring people staff are.

CCTV is not the answer to stopping abuse. The answer is paying the work force properly. Putting in place actual trauma informed care and services. Supporting people in their own homes. Treating people with dignity and respect.


CCTV is a breach of our human rights. Full stop. Let’s not legislate to further breach our rights!

We already have a reduced ability to advocate and challenge the system. If you are worried about patient safety then know that CCTV will only increase the power differential.

I appreciate CCTV feels like an easy fix. However, let’s start from the position of people’s human rights. Then it’s really clear that the addition of CCTV in ambulances is diluting rights.  It can’t possibly pass the proportionality test: is it lawful, legitimate, proportionate?

Please don’t put CCTV in ambulances. Kindly review how it is used – and abused – everywhere else.


Let me finish by asking you 3 questions:

How can this guidance justify CCTV as the least restrictive option?

What other alternatives that don’t breach peoples’ rights have been considered?

Why aren’t other alternatives mentioned/used?

Ian and Claire, Rightfullives would really appreciate a meeting to discuss this. We have some insights which we feel are important and need to be considered.


Best regards,


Alexis Quinn – Rightfullives

Self Advocacy- what is it and what’s happening to it

A guest blog by Jenny Carter

Self advocacy is where people with disabilities speak up for themselves.  This doesn’t need to be verbal communication the person can use other ways to communicate but communication is important to self advocacy. Self advocacy enables people to advocate for there rights needs and want they want explain to others what there rights are and enables people to stand up for their rights.
Continue reading “Self Advocacy- what is it and what’s happening to it”