Dear Rightful Lives,
This submission details my autistic daughter’s distressing experience of being caught up in a NHS culture of misunderstanding, bullying, and unprofessional practice.
Lizzy (not her real name) successfully masked for years. It was only after she failed to speak a single word in an oral GCSE exam that the true extent of her difficulties became evident. She was diagnosed with autism and cooccurring mental health difficulties i.e. severe anxiety which manifests as selective mutism, panic attacks, and social phobia; and clinical depression. She was initially under the care of CAMHS (CYPS) but discharged on her 18th birthday.
Lizzy’s depression worsened because her anxiety was such that she was unable to access education, training, or employment; and the local authority was challenging a SEND Tribunal decision (for Lizzy to be supported through an education, care and health plan) in the Upper Tribunal. Lizzy was referred by a speech and language therapist to adult mental health services, and at her second appointment she proactively asked to be referred to the local Eating Disorders Service (EDS) because she had recently become very obsessed about controlling what she was eating, and although she has always been slim, she was notably losing weight. She was diagnosed with anorexia, even though she does not meet the diagnostic criteria for anorexia, because she does not have any body image issues.
Within 8 weeks of the anorexia diagnosis, professionals had held a meeting about Lizzy, without her, and even though Lizzy was an adult with capacity, they had taken a ‘Best Interests’ decision to hospitalise her under the MHA if she did not given consent to inpatient treatment in an out of county hospital with a specialist eating disorder unit (SEDU). Lizzy acquiesced but made it clear she was only agreeing to informal admission to avoid being sectioned.
We submitted a complaint because we felt the hospitalisation decision had been taken too soon, it had not been properly discussed, no evidence existed of recent weight loss or medical instability; and that the Eating Disorder Service had failed to make reasonable adjustments to support Lizzy within the community. Four days after the complaint was admitted, Lizzy was hospitalised on an acute medical ward and put under continuous (agency RMN) supervision and control. Lizzy was told nothing about the plan to admit her for acute inpatient treatment, and she was unfairly duped into entering a locked ward for an outpatient appointment, only to find a plan was in place to immediately admit her. She faced a Hobson’s Choice: either to be be admitted informally or under the MHA: Medical records show that plans were in place to detain her under s5(2) of the MHA if she did not agree to the admission.
The admission to a medical ward proved isogenic because Lizzy’s lifelong dietary needs were not accommodated and, for the first time in two months, Lizzy lost weight (Lizzy’s weight had been stable for 9 weeks: she had a BMI=15 on admission but she then lost 1.7kg in 7 days). The drastic weight loss meant Lizzy was subjected to ‘consensual’ nasogastric feeding in hospital; and she became medically unstable for the first time.
Lizzy’s stated wish to return home was not accommodated, and NHS staff refused to recognise Lizzy’s need for a (parent) advocate.
Lizzy remained on the acute medical ward, under arms reach, 1:1, 24/7 RMN observation until a bed became available in an out of county hospital with a Specialist Eating Disorder Unit (SEDU) 12 days later. EDS staff accepted the SEDU bed before discussing it with Lizzy, and they told her that she would be assessed under the MHA if she did not agree to transfer there as an informal patient.
On admission to the out of county SEDU the level of 1:1,24/7 observation was immediately lifted (proving it had never been medically necessary) and Lizzy was told the hospital was unwilling to accommodate her lifelong (largely) dairy free diet (she has a NHS diagnosed history of food allergies and sensory issues; and it fell to parents to purchase all the non-dairy food essentials she needed (soya milk, margarine, yogurts, desserts) during her 15 week inpatient treatment for an Eating Disorder.
During her inpatient treatment, Lizzy obtained an independent diagnosis of ARFID (Avoidant and Restrictive Food Intake Disorder) but this information was ignored by NHS staff.
Lizzy did not find inpatient treatment helpful. It took five weeks of hospital treatment before she regained her pre-admission BMI (15) during which time she was not allowed any home leave.
Lizzy self-discharged from the SEDU as soon as she felt safe to do so (BMI=18+). She has, during the past two years, refused all further input from adult NHS mental health services and she no longer trusts NHS staff.
Summary of unprofessional practice by NHS staff:
1. NHS staff breached the principles of the Mental Capacity Act:
- Lizzy was excluded from the ‘professionals meeting’
- NHS staff disregarded Lizzy’s known wishes to be treated in the community
- Staff took an illegal ‘Best Interests’ decision for Lizzy, an adult with capacity
- NHS staff failed to apply the trusts ED IP care pathway criteria (BMI<13 or medically unstable) when making the illegal ‘best Interests’ decision to hospitalise Lizzy
2. NHS staff applied coercion (threat of MHA assessment) to secure consent to IP treatment:
- The use of coercion can invalidate any consent given
- The use of coercion breaches BMA guidance on consent to treatment
- The use of coercion breaches the Mental Health Act Code of Practice
3. NHS staff breached the Equality Act by failing to make reasonable adjustments to support Lizzy in the community:
- Reasonable adjustments might have included part time attendance at day treatment
- Reasonable adjustments might have included support with travelling to day treatment
- Reasonable adjustments might have included a quite space for Lizzy to use within the day treatment unit
4. NHS staff breached the Equality Act by victimising Lizzy in connection with the complaint
- Lizzy was unexpectedly hospitalised four days after the complaint was submitted
- Lizzy was given no forewarning of the plan to admit her to an acute ward
- Lizzy was hospitalised just 10 weeks after the anorexia diagnosis even though her weight was stable and medical records confirm she was medically stable too
- Lizzy had to endure two separate hospital admissions i.e. admission to an acute ward of a local hospital before then transferring to the out of county SEDU; rather than the one (SEDU) admission she had anticipated
5. NHS staff engaged in ‘entrapment’ strategies to secure Lizzy’s consent to IP treatment:
- Lizzy was duped into entering hospital premises i.e. an outpatient appointment
- The real plan was to immediately admit Lizzy: the ward was locked and Lizzy was not free to leave, nurses told Lizzy her bed was ready even before she met the consultant; the nursing station whiteboard showed her name with the letter ‘S’ and contact details of the emergency duty team; and an agency RMN (funded and provided by the mental health trust) was present to ensure Lizzy was admitted
- Medical records reveal NHS staff intended to illegally apply MHA s5(2) holding powers to detain Lizzy on hospital premises (for up to 72 hours, with no right of appeal) if she did not consent to immediate admission
- Lizzy acted under duress: she acquiesced to immediate admission to avoid being involuntarily detained under the MHA
6. Information necessary to inform the consent process was not provided to Lizzy:
- Lizzy was not told she would be placed under 1:1, 24/7 RMN observation or why
- Lizzy was not told her lifelong dietary needs would not be accommodated as part of her IP treatment in a SEDU.
7. Lizzy was subjected to an unlawful deprivation of liberty whilst on an acute ward:
- Lizzy acted under duress when she gave consent to admission; and the gastroenterologist failed to explain what IP treatment would involve
- Lizzy remained under duress (threat of MHA detainment) as an IP
- The mental health trust responsible for covertly pre-arranging, funding, and implementing the RMN observation failed to seek Lizzy’s consent to the intervention or put a care plan in place to explain it, either before or after her admission
- The ongoing threat of MHA detainment, exemplified through the presence of the agency RMN’s, affected Lizzy’s ability to verbally object to the restrictions that had been imposed without discussion or explanation
- Even when Lizzy voiced objection to her care coordinator (when she visited her 7 days after admission) the level of observation remained in place.
- The level of observation was medically unnecessary: as soon as Lizzy moved to an out of county SEDU (where arguably any perceived risks would be higher) the observation was immediately reduced and Lizzy even had her own private bathroom.
- The restrictions imposed on Lizzy were disproportionate and unreasonable: Lizzy was an informal patient who has no history of self-harm or violence
- Lizzy was under continuous supervision and control (RMN 1:1,24/7 observation)
- Lizzy’s human rights were impacted. Lizzy had no privacy: she was observed using the toilet, showering, when visitors were present, and when she was sleeping.
- Lizzy was subjected to daily anti-coagulant injections because of the restrictions imposed by hospital doctors on her physical movements i.e. she was not allowed to freely move around, or leave the ward, even with other people
- Lizzy was not free to leave the hospital: plans were in place to detain her under MHA s5(2)
8. The mental health trust has tried to claim that because Lizzy has capacity and had consented to informal treatment, she was not deprived of her liberty:
- The trust has used a protected characteristic (disability) against Lizzy.
- The trust failed to obtain Lizzy’s consent to the level of observation they pre-arranged, funded, and imposed
- The trust is fully aware of Lizzy’s lifelong ASD communication and interaction difficulties and how these impact on her individual ability to easily converse with people outside the family: especially people she does not know or trust.
- The trust is also fully aware that the medically unnecessary 1:1, 24/7 RMN observation served to continue to place Lizzy under duress (threat of MHA section) and made her act in a way that, given a free and informed choice, she would not otherwise have done.
9. The hospital trust has since tried to claim that the RMN input was a ‘Reasonable Adjustment’
- Most reasonable people would agree that placing anyone with a social phobia (who has no history of self-harm or violence) under intense observation (as evidenced by the RMN observation records) was neither reasonable nor proportionate
- A reasonable adjustment might have been to allow family to stay with Lizzy instead
- The real reason for the RMN observation was to ensure Lizzy remained in hospital until a SEDU bed became available (anywhere in the UK)
- The impact of being placed under unnegotiable 1;1, 24/7 observation by a series of total strangers was that Lizzy was so embarrassed being watched using the toilet that she ate less than at home and promptly lost weight (1.7kg in 7 days) for the first time in 9 weeks.
- The ‘reasonable adjustment’ argument infers that anyone with autism would be placed under 1:1, 24/7 RMN observation whilst on a medical ward irrespective of whether or not such observation is medically necessary.
10. The SEDU’s claim it was medically unnecessary to accommodate Lizzy’s lifelong (largely) dairy free diet and that anorexic patients must have high dairy diets is also disability discrimination:
- NICE guidelines on Autism, Hypo and Hyper Sensory Issues; and on the Identification of food allergies and intolerances in under 19’s confirm personalised diets are medically necessary
- The South London and Maudsley hospital (and others) proactively cater for vegan (dairy and meet free) diets as part of their specialist ED treatment service.
We hope Lizzy’s experiences will help secure improvements in health services for other people.