Content warning: Saffron’s story around autism, ARFID, and the NHS may be distressing to some readers. It includes commentary on food, eating, mental health, and suicide that some readers may find triggering and extremely distressing.
After recent political events that have left the world even more unstable, or rather (as some of us call it) we witness the last desperate cry of Western capitalism, many of us are left wondering where this will leave us. What will happen to us?
As we look at British politics, many of us were pleased to see the change to a Labour Party government following 14 years of austerity under the previous Tory government. The discovery of a massive black hole in the country’s finances, however, has left many of us feeling like nothing’s going to really change.
The much-needed changes to our once proud NHS are looking like less and less of a reality. From the completely inaccessible Change the NHS campaign that many patients have struggled to complete (if they knew about it anyway) to the recent drive to change patients’ rights under the Mental Health Act that shows the complete disregard of Autistic patients in those settings in the first place – people are wondering what these changes really will be.
Will they ever actually highlight the years of neglect that many of the NHS’s chronically ill and disabled patients continuously face?
Moreover, will any of this make a difference now?
But crucially, will any of this help people like Saffron now?
Meet Saffron, whom the NHS is putting at extreme risk
Saffron is a young Autistic woman who lives with OCD and avoidant restrictive food intake disorder (ARFID). She is currently being held against her will at Southport Hospital, Lancashire, under Section 3 of the Mental Health Act, due to years of repeated neglect, misunderstanding of her medical conditions and her autism, and a lack of support to live with them. Saffron explains all in this video:
@autisticinclusive Please meet Saffron – a 25 year old autistic young woman, with OCD, arfid, and a history of sexual abuse. She is currently on a section 3 in Southport and Formby District General Hospital. Saffron presented herself at A&E on the 3rd of October willingly, as she recognised how dangerous her weight was, having dropped to 47 pounds, which is 3 stone 5 pounds. After waiting overnight, she was placed on a ward and sectioned within 1 hour, despite her showing understanding of the severity of her condition, and being accepting of treatment. She was immediately tubed, even though she begged to be allowed to eat food, or even drink supplements. Saffron is now 4 stone 1 pound in weight, and wants to have the choice to be able to eat food instead of being forced to have a meal plan via an NG tube. She finds the sensory experience of the tube in her throat and the pain in her stomach unbearable. She loves food, and it is one of her special interests, and she just wants the chance to have an oral meal plan and put on weight that way, but the doctors in charge of her care refuse to even trial this less restrictive approach. Saffron has said that even though she has a community team diagnosis of arfid, the psychiatrist in charge of her care has disregarded this and is treating her as if she has anorexia. She has been told that she is ‘just trying to avoid food’ and that they have ‘seen it all before’. Currently, Saffron is not allowed to go outside in a wheelchair to have fresh air, is not allowed to leave her room, is on 24/7 1:1 care without privacy to use the toilet, and is made to wear mitts on her hands at night to stop her pulling out her tube, even though she has not pulled it out before. She has been restrained and sedated multiple times when she has tried to resist the NG tube and asked for food instead. The invasive and violent nature of the tube and the treatment she is recieving ignores the trauma that Saffron deals with day to day from abuse she has experienced previously, and is having an extremely damaging impact on her mental state. The doctors have planned for Saffron to go to a specialist eating disorder unit when they feel she is ready, even though she has had 11 previous admissions to these places, and each time has experienced very standardised treatment with no accomodations for her autism, and no understanding of arfid compared to anorexia. Saffron is not resistant to gaining weight – she just wants a chance to gain weight through eating food, and to be treated like a human being. She wants to get to a stable enough place as soon as possible so she can continue her weight gain in a safe, supportive community environment; either a supported living residential, or at home with her mum. Please support Saffron in being given appropriate treatment, and put an end to this abuse of the mental health act. Her treatment is not the ‘least restrictive’ option and does not consider her individual needs. It has taken away all her hope for the future and left her feeling scared, isolated, and unable to cope. Saffron deserves the chance to gain weight through eating, and when stable she needs to be back in the community – not in an eating disorder hospital that cannot provide the right support for her.
You can sign Saffron’s petition by following the link below:
https://www.change.org/p/get-saffron-into-community-treatment
Saffron told the Canary that she had been admitted to eating disorder units on and off her whole childhood, with a diagnosis of anorexia. She found safety in them and the support and routine they offered – so entered a cycle of admission-discharge-relapse that continued up until she reached adulthood.
At the age of 19 years old, while at university, Saffron was abused. She then began to suffer from severe anxiety and found that her sensory coping mechanisms, executive function, and need for routine became a lot more important but harder to manage, leading to her previous ARFID issues amplifying greatly. Her weight plummeted.
Adults units were a different experience because Saffron’s eating disorder had changed, and they did not provide the specialised care she needed. They could not provide a personalised approach that targeted the drivers of Saffron’s ARFID and supported her to cope with the trauma she had experienced.
Furthermore, the standardised ‘set up’ was extremely distressing, often forcing Saffron into a ‘panic mode’ or shutdown, resulting in her feeling, upon discharge, less able to cope with life than before.
This led to Saffron avoiding units altogether, with the support of her mother at home.
Gaining weight even amid a misdiagnosis
Unfortunately, Saffron’s ARFID issues (still misdiagnosed as anorexia at this time) meant she was unable to gain weight, though with she was able to avoid any further loss. She completed her degree and worked as an accountant, but she also began to realise a passion for helping people. Saffron spent much of her free time passionately volunteering for autism and mental health charities, and then decided to do a conversion masters in nursing.
Unfortunately, Saffron was forced to leave her course due to her low weight and was told she needed to have a Mental Health Act assessment.
She was sectioned and admitted to Southport Hospital for the first time around three months ago.
During an eight week admission, Saffron gained weight, and the hospital let her go home. She found the admission difficult, but not as traumatic as unit admissions, as she was allowed her own food and could keep some of her routines.
However, this wasn’t the end of the story.
Weaponising the Mental Health Act
Saffron stopped engaging with some NHS services upon discharge. Saffron said this was because she felt pressured and scared, after they had threatened her with tube feeding If she didn’t put on enough weight. She hadn’t gained as much weight as they wanted her to, and she didn’t want to keep lying.
She felt helpless: she wanted support, but didn’t want to be sectioned again.
With hesitation she reengaged with her community team and felt understood when, after years of being treated under a diagnosis of anorexia or EDNOS, finally got a correct diagnosis of ARFID, and her previous diagnosis retracted.
Her team asked her to be honest about her weight, and promised her 7-14 days in the community and that she would not be sectioned if she was honest. Saffron, finally believing she could get the support she desperately wanted, put her trust in them.
Sadly, this is not what happened.
When Saffron went in to be weighed, doctors sectioned her – and she has been in hospital ever since, under a Section 3, where she is undergoing incredibly restrictive treatment.
Ignoring the code of practice – especially around autism
Her preferences and concerns are dismissed, the complexity of her conditions is ignored, and often actions taken seem contrary to the ‘least restrictive approach’ which is a core part of the Mental Health Act.
The Act’s code of practice asks that patients are central in their treatment and involved with decisions, and that, for Autistic patients, discharge planning occurs immediately upon admission. It also describes how important it is that autism specialists are involved, or staff are appropriately trained in autism when supporting autistic patients. The code of practice also explains how restrictive practices can, for people with autism, lead to a spiral of challenging behaviour to express distress, and then further restrictive practices, and more challenging behaviour to express even more distress.
Yet this guidance seems to be completely ignored by those providing Saffron’s care.
The doctors and staff fail to understand Saffron’s ARFID, or her perspective as an Autistic woman. She is being force fed and finds many of her autistic needs or difficulties being perceived as mental health issues which need changing, rather than accommodating or managing.
‘It’s so wrong and unfair’
Saffron told the Canary:
I’m not allowed any fresh air, even if I’m in a wheelchair – in fact, I’m not even allowed to leave my room. For a few days I wasn’t even allowed to open the window.
I even have to wear mitts every night, and I am often restrained even when I am posing no harm to myself or others. Everything feels so scary and confusing.
I’m also on a constant one-to-one, in case I pull out the feeding tube. And I admit, on the second day I was here, I cut it out. Because I thought they might give me a chance on food if I did. When the tube was reinserted straight away, I realised this wasn’t the case, and I haven’t touched it since. But even after six weeks, they won’t take me off one-to-one or give me a trial of food. I can’t crochet because I took my crochet hooks away because apparently, I could pull out the tube with them, even though I never ever tried anything like this. Without my hobbies, I feel lost. I’ve lost everything in my life that I have.
Food is another one of my special interests. Since I was four years old, I collect certain foods. I have all the wrappers of any new varieties that come out of them. I do food reviews too. I love food, and every year I do my Christmas reviews. As someone who’s autistic, that’s kind of my thing that I do every Christmas. And now I can’t do it. And it’s the most frustrating thing and makes me even more upset about tube feeding.
It feels so wrong and unfair, particularly when I’ve put on a lot of weight. I’ve put on 14lb since I’ve been here. And I could be doing it through food and enjoying it. And doing my reviews.
These are the mitts doctors forced her to wear:
Saffron: completely isolated and alone
She feels isolated as her family live a five-hour drive away in Buckinghamshire. And worst of all – the hospital is saying that they want to discharge her to a residential eating disorder unit, which is completely inappropriate for her needs. She has had ten previous admissions, all of which have physically restored her weight in the short term, but led to relapses and worsening of her mental state.
Saffron told the Canary:
Eating disorder units are the worst places in the world. They can’t cope with people who have a different routine. It’s just a feeding farm. They just feed you. [Autistic] people have special food preferences, and they don’t understand my ARFID.
It’s not a good environment for me to be in. I need a place where they’re going to help me holistically understand my problems and treat me as an individual. And I think I do need to have some control over food and routine because that’s sustainable and would help me transition home.
In an eating disorder unit, I end up without my routine and the things that make me feel comfortable. In the unit I just do as they say and then as soon as I leave, inside I’m raging because I can’t cope with it. I completely lose myself in eating disorder units.
Saffron’s case is yet another gross misuse of the Mental Health Act.
Actively misrepresenting – and mistreating – ARFID
The medical doctors who see her say that Saffron is physically stable and would like her to have a chance with food – and potentially go home. However, the psychiatrist in charge disagrees – and is treating her like she has anorexia, despite her ARFID diagnosis. They say things to Saffron like “we’ve seen this all before”, “we know what people like you do”, “you’re just trying to get away with not eating” – which, given Saffron lives with AFRID, is just not true.
Saffron has tried to challenge her sectioning and how the hospital is treating her. She has exhausted all avenues with PALS – which in most hospitals is not fit for purpose. Saffron has been to the CQC, which dismissed her situation. She has a hospital-appointed independent advocate who has failed to support her.
This is an email Saffron previously sent to PALS:
Doctors’ gaslighting Saffron to the point of suicidal ideation
Saffron is now having suicidal ideation, and even made an attempt on her life while in hospital which led to increased restrictions. This was not because of mental health issues, but because of the fact that she doesn’t know what else to do to get the support she needs.
Let’s be clear: it is the health service’s treatment of her over the years that have led her to this point – from misdiagnoses to inappropriate autism care via the incorrect psychologisation of her conditions.
She feels things will not change – and that being in Southport Hospital is just making the situation worse for her.
Commenting on Saffron’s situation, Joseph Redford from the Neurodivergent Labour group told the Canary:
It is appalling that in the 21st century, neurodivergent people are still being treated this way. The Labour party needs to use its mandate to reform healthcare and treatment for neurodivergent people so that our needs can be met and human rights respected.
It is unclear what will happen next to Saffron. Without her family, hobbies, or appropriate and safe support from Southport Hospital, her situation is terrifying.
‘A body with no rights’ under the NHS
Emma from the grassroots group Autistic Inclusive Meets (A.I.M) has been supporting her. She told the Canary:
Saffron is being given no autonomy, and no say in her healthcare treatment plan.
She is not allowed out for fresh air.
She is not allowed food.
She is not allowed to leave her room.
She is restrained and force fed, and when she let me know the desperate measures she felt she might have to take, it was not only horrifying to us that she felt so low, but it was also devastating that such unconscionable medieval methods are being used on her and understandable why she feels there’s no way out.
Saffron is being treated like a puppet, a body with no rights.
It cannot be allowed to continue.
Saffron is not asking for a lot, in the grand scheme of things. She wants to be listened to, for her treatment to be appropriate for both ARFID and autism, and to simply be supported – not dictated to.
Saffron does need help – but not like this
Saffron summed up by saying:
I know I need help. I have never had support for the sexual abuse I have been through, and for years I have been treated for a now-changed misdiagnosis of anorexia, which has, in turn, only made my difficulties even more complex, and left me institutionalised. But I want to be treated like a human and to feel supported.
I want to find my personality again. Eating disorder units have damaged me and made it harder for me to manage in the real world, and my treatment most recently feels like it has reduced me to an empty shell, completely lost and unable to cope.
I feel in constant shutdown from the complete overwhelm of the last six weeks.
I need clear goals, plans, understanding of sensory issues, routine, and adapted communication. I need people to listen. I wish my team had worked with me thus far and given me support, rather than stereotyping me, ignoring my feelings, and actively excluding me from my care, and taking away anything that keeps me comfortable or makes me feel safe.
I can’t take away what has happened, but I want to be going home with intensive support or to go to a residential unit that specialises in autism and complex mental health. A place where I can truly get better.
Institutional failings and neglect of Autistic people and those living with ARFID
This is the third case the Canary has reported one where young Autistic women who also live with ARFID have been detained by doctors who have weaponised the Mental Health Act against them.
It shows a gross level of negligence in terms of patient support and safety.
These cases also display that the Mental Health Act safeguards are not fit for purpose.
But moreover, Saffron and others’ situations show the NHS is incapable of managing ARFID – and wilfully obtuse when it comes to supporting Autistic people.
Change is needed – and quickly. Whether or not Labour’s ‘reforms’ to the NHS and the Mental Health Act deliver any of that remains to be seen.
Please sign and share Saffron’s petition here.
Featured image supplied
Additional reporting via Steve Topple
