With the Budget being announced this week by the new Labour Party government, we have seen yet more of the same old cuts to the services that support the most vulnerable. As usual we have seen repeated debates on social media, the news, and political chat shows – with politicians discussing the rights and wrongs of their political parties or governments’ decisions. Yet after years of Tory austerity and what looks like Labour following suit, things will be no better for so many of us. But seeing the same faces argue the same points over and over isn’t just boring, it’s also not reality. It unfortunately never really shows the realities of how this all affects everyday people, people who really live these decisions. People like Holly:
Meet Holly, whom the NHS is catastrophically failing
Holly is a 17-year-old young Autistic woman who lives with OCD and avoidant restrictive food intake disorder (ARFID). She is a creative young person who runs her own sewing business and volunteers for a local animal charity. And although Holly has never had any direct interactions with any of these politicians, their decisions and financial choices have led to her currently being held against hers and her family’s will with the threat of being force fed.
You can sign the petition in support of Holly by clicking the link below:
She, because of countless cuts and changes to the health and social care system that she had always believed would be there to support her, is now being kept under guard at the Queen Elizabeth Hospital, Woolwich, South London. Bexley child and adolescent mental health services (CAMHS) have sectioned Holly under the Mental Health Act.
In what Holly’s mother Rebecca describes as a catalogue of mistakes, Holly had been struggling with her weight and was originally given a nasogastric (NG) tube, and worryingly the antipsychotic olanzapine.
In June 2022 this was changed to a percutaneous endoscopic gastrostomy (PEG) tube which allowed Holly to go back to eating, with the tube being used for her medications. Holly had been doing well gaining weight in the community. During this time Holly also turned 17 years old, so was no longer under the services of children’s care.
Holly, who had been doing extremely well with the support of her family in the community, was then left from January to June with the same PEG tube. And for anyone who knows anything about PEG tubes, this is incredibly dangerous. As a result of this Holly developed severe sickness, inflammation, and secondary infections whilst the PEG tube was left to rot in her stomach for four months. And this was just the beginning.
Life-threatening
With Holly in a life-threatening condition her mum and her family, being strong advocates for her, continued to do everything they could. With the PEG tube still causing various infections for Holly, Rebecca was desperate to find out why it wasn’t being removed. Eventually getting to the point where she was screaming at medical staff:
My child’s going to die. Help us.
This was to no avail. She then resorted to going to her local MP.
On discovering that the hospital had refused to remove Holly’s PEG tube because she was “Autistic and a complex case”, the family was able to get her local MP at the time to convince the hospital that the PEG tube needed removing.
When Holly was finally given the appointment for the removal of the PEG tube her and her mum discovered that it was the same consultant who had originally refused to see Holly because she was “Autistic and a complex case”.
The consultant, when meeting Holly an Autistic person with ARFID and OCD for the first time, then told her “You’re not what I was expecting, you’re pretty” to the shock of both Holly and her mother.
With the PEG finally removed and refitted Holly was again given anti-sickness medication and was again able to gain weight with the support of her mother back in the community. But regardless of the complete lack of support and understanding of ARFID both her and her mum had tried to secure for Holly, this still wasn’t enough.
Weaponising the Mental Health Act because of ARFID
With the now-involvement of social services and CAMHS Holly was being told that she still wasn’t gaining enough weight and that she needed to go into hospital for support. Holly and her family were told she would not be sectioned if she did this.
Holly, along with her mother went into hospital.
Holly was then sectioned:
@autisticinclusive Right now in Queen Elizabeth Hospital in Woolwich there is a 17 year old girl named Holly who has been sectioned. Holly is not mentally ill, she has Arfid and due to a medical complication with her feeding tube left untreated by the NHS despite her and her family begging for treatment, she now weighs only 4 stone 9lb. The hospital have her on a general ward with a 24 hour mental health nurse guard outside her door. Holly is autistic and has OCD. There is no way for her to access a kitchen, a cooker or a fridge to store food she deems safe, so she has had to resort to eating only biscuits and other pre packaged goods such as muffins. Holly is gaining weight, but is told “not quick enough” despite being made to eat 3,000 calories a day. To eat that amount with a shrunken stomach is incredibly painful for Holly, but the hospital have informed her that if she does not eat the full amount of calories, every day, they will resort to force feeding her via her peg tube, using clinical restraint. At the moment they have demanded that the nurse on guard watches her eat and then watches her for one hour afterwards as well. The hospital are not looking at WHY she’s not gaining weight, they are simply using threats to scare her. Holly is a well mannered, softly spoken young lady. She has a voluntary job in a Animal Charity Shop and also raises money for the Greenwich and Bexley Hospice selling hand made sewn items. She runs her own small sewing business and is a beautiful artist. She enjoys spending time with friends and family and with her beloved dog. Holly’s Nanny is very ill and they have told Holly that unless she gains weight, she won’t be allowed out to see her. Rebecca Holly’s mum has this to say: “Holly’s initial food issues began in 2021, triggered by the pandemic. The most recent issues began in January, when the peg tube started to rot in her stomach and the nhs took 4 months to replace it, then another 3 months to fix damage done and stop her vomiting on every meal. Holly is in hospital now because camhs said she was not gaining weight quick enough. This needs to be exposed as it is an abuse of the Mental Health Act. Holly presented to hospital voluntarily to avoid sectioning. A day later they sectioned her anyway.” Please sign and share to demand that Holly be released so she can be with her family with care in the community, at home where her foods she is comfortable eating can be freshly prepared in her own kitchen. Lastly we demand that the appropriate medical investigations be put in place in the community to find out WHY Holly cannot gain weight, threats and intimidation while being forcibly kept in a hospital room will do nothing but cause trauma and more trepidation towards food.
Whilst Holly has been in hospital, sectioned under the Mental Health Act partly due to the blunders over the removal of her PEG tube affecting her weight, she has had no way to access her safe foods.
Holly lives with ARFID and this is incredibly important. Not having her safe foods can have a huge impact on her and what she can then eat. This means she currently weighs around four stone and 9lb – showing that again there has been a clear lack of understanding from the hospital and its staff in regard to Holly’s Autism and ARFID.
They are not only using the Mental Health Act against her, but they are also weaponising controversial applied behaviour analysis (ABA) against her as well. She has been told, whilst under constant guard, that until she puts on weight, she is unable to see her nan who is currently very unwell.
So along with her being forced to eat 3,000 calories a day with foods that have no nutritional value – which currently consists of nothing but chocolate digestives – she is then being asked why she isn’t putting on weight.
Holly has been left with no choice but to go public
Holly and her mother have been desperately trying to reverse this decision. Their first step was to take this to a tribunal. This tribunal was then adjourned, because there was no paperwork submitted from CAMHS and due to the doctor “not being able to find Holly” in the hospital.
Holly and her family then tried again, but their concerns were dismissed, and they lost the second tribunal. This was with the caveat that the hospital will now at least start looking into why Holly isn’t gaining weight.
Holly has been accused by the director of nursing that, because she is not putting on weight, she must be somehow opening the PEG tube she is currently on. This is being disputed by Holly’s solicitor as being physically impossible due to Holly’s ARFID, OCD, and fear of food.
She has been made to feel like she has little choice now but to go public. Rebecca told us that she was worried that if Holly was to go public, she would receive bullying and trolling. But Holly explained to her mum that she already receives looks and comments from the public every time she goes out or holds her teddy in public and she can’t stop them. So, if she went public, at least online she could block them, unlike in real life:
@autisticinclusive Right now in Queen Elizabeth Hospital in Woolwich there is a 17 year old girl named Holly who has been sectioned. Holly is not mentally ill, she has Arfid and due to a medical complication with her feeding tube left untreated by the NHS despite her and her family begging for treatment, she now weighs only 4 stone 9lb. The hospital have her on a general ward with a 24 hour mental health nurse guard outside her door. Holly is autistic and has OCD. There is no way for her to access a kitchen, a cooker or a fridge to store food she deems safe, so she has had to resort to eating only biscuits and other pre packaged goods such as muffins. Holly is gaining weight, but is told “not quick enough” despite being made to eat 3,000 calories a day. To eat that amount with a shrunken stomach is incredibly painful for Holly, but the hospital have informed her that if she does not eat the full amount of calories, every day, they will resort to force feeding her via her peg tube, using clinical restraint. At the moment they have demanded that the nurse on guard watches her eat and then watches her for one hour afterwards as well. The hospital are not looking at WHY she’s not gaining weight, they are simply using threats to scare her. Holly is a well mannered, softly spoken young lady. She has a voluntary job in a Animal Charity Shop and also raises money for the Greenwich and Bexley Hospice selling hand made sewn items. She runs her own small sewing business and is a beautiful artist. She enjoys spending time with friends and family and with her beloved dog. Holly’s Nanny is very ill and they have told Holly that unless she gains weight, she won’t be allowed out to see her. Rebecca Holly’s mum has this to say: “Holly’s initial food issues began in 2021, triggered by the pandemic. The most recent issues began in January, when the peg tube started to rot in her stomach and the nhs took 4 months to replace it, then another 3 months to fix damage done and stop her vomiting on every meal. Holly is in hospital now because camhs said she was not gaining weight quick enough. This needs to be exposed as it is an abuse of the Mental Health Act. Holly presented to hospital voluntarily to avoid sectioning. A day later they sectioned her anyway.” Please sign and share to demand that Holly be released so she can be with her family with care in the community, at home where her foods she is comfortable eating can be freshly prepared in her own kitchen. Lastly we demand that the appropriate medical investigations be put in place in the community to find out WHY Holly cannot gain weight, threats and intimidation while being forcibly kept in a hospital room will do nothing but cause trauma and more trepidation towards food.
‘Completely neglected’ by the NHS
Holly’s video has now had over three million views on TikTok, as she tells her story from her guarded hospital bed
Her mother, seeing Holly in more pain and distress than she has before, explained to us that not only was she disappointed in the medical professionals, CAMHS, and the law for letting Holly down, she was disgusted with the catastrophic failures that have put Holly in the position she is now in.
Rebecca told the Canary:
My husband and I have advocated for Holly tirelessly. Our family have been vilified. Holly has not been listened to or believed, they have treated her with disrespect, when she needed care, they have watched her eat, when it is her biggest fear, they have implied that she is purging in some way, when all she wants is to gain weight having lost over 5kg due to the failings of the NHS earlier the year.
We feel let down, angry, and exhausted.
The impact of their failings is on the whole family, siblings, grandparents, aunts, uncles, and cousins. We have zero trust in any so-called professionals. We need to recover as a family and pick up the pieces of our lives and get Holly home, as a matter of urgency, to heal physically and mentally from this trauma.
Finally, with the support of organisations like Autistic Inclusive Meets (A.I.M) and fantastic advocates like Emma, Rebecca and Holly are starting to get their voices heard and have their story told.
Emma from A.I.M told the Canary:
When we were contacted by Rebecca, we knew we had to act, and fast. Holly is being discriminated against, threatened with not being able to see her sick grandmother unless she puts on weight, and with forced feeding.
Until we put out the videos on social media there were no tests being run at all and Holly was confined to her room.
There is so little understanding of ARFID and no accommodations being made to include Holly in her own treatment, she could easily be treated and observed at home.
This section is unnecessary and has caused nothing but trauma.
But the reality is, none of this should have ever happened.
Another day, another young woman failed
Countless political decisions and cuts to our NHS, health and social care, along with social support and services has caused Holly, a young Autistic woman living with AFRID and OCD, to be held under the Mental Health Act against her will – with currently no support.
How we treat the most vulnerable in our society is usually a reflection of how we are as a society. And if that’s the case then we are truly heading in the wrong direction.
Holly told the Canary:
Unfortunately, many disabled people are being mistreated and ignored by the NHS and CAMSH. Our healthcare system is meant to help and heal us – yet there are hundreds of disabled adults and children being denied care, not receiving the proper accommodations or treatment, or being straight up abused.
This is a widespread issue that needs to be addressed and improved.
Please listen as it breaks my heart.
We deserve love, care, our opinions and wants listened to, appropriate treatment, and a safe environment to recover – not threats, abuse, and trauma. As long as disabled people’s stories are ignored, the longer they will continue to happen. We need a better understanding of more conditions/disabilities and a healthcare system that is able to care for ALL in an appropriate way
We have to do better than this. We cannot neglect, abuse, and mistreat people who simply need our understanding and support – people like Holly, who currently needs our support, regardless of what the budget says.
Please sign and share Holly’s petition here.
This is the latest news on Holly:
@autisticinclusive
Featured image and additional images supplied
