Christmas Adjournment

Steff Aquarone Excerpts

Thursday 19th December 2024 Commons Chamber

[Steff Aquarone (North Norfolk) (LD)]

Happy Christmas, everyone. Patricia is a young, intelligent woman with a severe eating disorder. Despite the tireless work of professionals involved in her care, her mental health treatment needs are not being met, and her progress has stalled. The east of England provider collaborative, which is responsible for referrals to specialist eating disorder units—SEDUs—is intended to ensure co-ordinated care close to home, but in Patricia’s case, it has failed profoundly. Since becoming involved in July, I have observed a pattern of miscommunication, delays and systemic neglect. My attempts to engage with professionals at the Cambridge and Peterborough foundation trust, which provides local eating disorder services, were initially referred to lawyers, and the communications relationship between Patricia, her family, and care providers is all but broken. Meanwhile, there appeared to be no overall co-ordination of or plan for Patricia’s care.

This summer, Patricia stabilised medically during a long admission at Norfolk and Norwich hospital. She was promised an assessment for referral to a SEDU, but faced prolonged delays, only to be rejected for admission. She was devastated, yet resolved to continue to seek help. At the time, I accepted that it might simply be the case that Patricia was not medically stable, despite that being at odds with what her clinicians at the hospital were saying.

National NHS guidance requires

“coordinated care and efforts to reduce and prevent gaps during service transitions”,

yet Patricia’s transitions between services have been anything but co-ordinated. Crucially, she has been denied care based on her disability and mobility needs. In meeting with those involved in her care, I sought closer collaboration between acute and mental health trusts, a patient-centred care plan, a dedicated caseworker and the appointment of an external specialist. Instead, the response was a shared email inbox—hardly the co-ordinated expert oversight required.

Patricia’s eating disorder is not “treatment-resistant” or “untreatable”, as some have claimed; these terms lack empirical basis and perpetuate stigma. Yet Patricia has been judged for behaviours symptomatic of her condition —at one point, her care team removed her from a SEDU waiting list after she “confessed” to such behaviours. This stigmatising approach is unacceptable.

Patricia’s complex needs, including autism and pathological demand avoidance, require an integrated approach. Some of the things that I and others have advocated for her to receive have been denied; others are taking a very long time to materialise. I understand that external psychiatrists are no longer invited to the weekly meetings about her care. Instead, the same individuals who seem to have given up on her also advise the integrated care board, creating a troubling conflict of interest. The collaborative care model appears to have failed her, and concerns raised by other professionals have been ignored. That led me to request NHS England’s intervention. Disturbingly, I learned that Patricia’s court ruling, which prevents forced treatment, is being used to justify withholding all care unless she complies with rigid, unattainable demands. That ultimatum—our way or the highway—is unethical and counterproductive, particularly for someone with autism and PDA.

Further, Patricia’s care documentation reveals a fatalistic approach that misrepresents her condition, effectively ensuring rejection from SEDUs. I believe this is a systemic issue, reflecting the toxic ideology in certain parts of the eating disorder treatment system that some patients are untreatable and should not be treated. This ideology, detailed in a controversial article in the Royal College of Psychiatrists newsletter, has no basis in evidence, yet it appears to influence Patricia’s care. She is sadly not alone in facing that. Eating disorders have the highest mortality rate of any mental illness, yet Patricia has been systematically excluded from lifesaving treatment. NHS guidance has been repeatedly breached. CPFT rejects external opinions, and even offers of eating disorder specialist therapy support within the hospital setting. Patricia needs a stable, specialist placement, with integrated medical and mental health treatment, yet she remains trapped in a cycle designed, I believe, to have her fail.

Clinicians who find themselves believing that there is nothing that can or should be done in a case should step aside from any role in it, not preside over it. Differences of opinion are essential to developing areas of healthcare, but they should be supported by supervision and challenge, not be encampments of ideology. Characteristically, Patricia refuses to die. I urge the House to support direct NHS England commissioning of a SEDU placement for her, bypassing CPFT and its affiliates. Her case needs a proper second opinion, and we need support for settings that are being asked to consider admitting her. The case will then need very careful handling to ensure her consent and participation, but I believe that can be achieved.

Patricia’s experience is a stark reminder of the injustices faced by vulnerable individuals in a system that should protect them. Her story echoes other national scandals where institutional neglect has caused immense harm. I am speaking today because Patricia, her family and I are at our wits’ end. She has a huge amount of value to offer the world. She is at a desperate stage of her illness, yet she refuses to give up. Treatment is her only chance and we must not abandon her. She will continue her fight. Her family will continue to fight, and I will be by their side every step of the way, but the NHS must act urgently to hold its services accountable, ensure adherence to guidelines, and provide the care that Patricia and countless others deserve.

[Several hon. Members rose—]