NHS plans to give youngsters suffering anorexia palliative care instead of treatment should be ripped up, a leading campaigner has said.
Leaked documents which emerged over the weekend revealed patients as young as 18 may be placed on a “palliative pathway”, which focuses on prioritising quality of life rather than recovery through re-feeding.
Author, counselor and campaigner Lynn Crilly, who has supported her own daughter Samantha through a fight with anorexia, said the plans are “deeply disturbing.”
Ms Crilly also revealed that she’d been “overwhelmed” with messages of concern from people after she expressed her anger about the plans on social media earlier tis week.
She said: “Twenty years ago, my daughter was diagnosed with the early stages of Anorexia Nervosa and OCD. There were many times we almost lost her to anorexia, but thankfully we are one of the blessed families to have Samantha here with us today – mentally strong and physically healthy.
“Having personally lived through this as a parent and someone who is now working professionally within the mental health field, these latest potential NHS guidelines clearly show that sadly the understanding, care and treatment for anorexia sufferers and their families has regressed rather than progressed.
“Anorexia Nervosa is a complex illness of the mind with dangerous physical consequences. Each sufferer is unique and each one of them experiences the disorder in a different way.”
Commenting on the current standards within the NHS for those battling eating disorders, she continued: “The mental health system is over-stretched and underfunded, making access to treatment challenging and sporadic for many, which can make life very difficult for sufferers and their loved ones. In too many cases this allows the anorexia to grow stronger making it harder for the person to fight and the NHS to treat successfully. This, coupled with the daunting prospect of palliative care,
give a feeling that the willingness to understand and support is not there. These plans will risk people being left feeling they are not worthy of the help – leaving them and their loved ones feeling hopeless. The plans should be ripped up.”
Details of the controversial plans emerged in a report in the Sunday Telegraph.
The document is understood to have been made available last year to the NHS clinical network in the East of England. It sets out a pathway for patients with severe and enduring eating disorders (SEED) who want access to eating disorder services “without the focus being on full recovery or weight gain”.
The resulting protocol – called a “SEED pathway” – is not mandatory. It proposes interventions including “physical health monitoring”, “motivational interviewing” and “palliative care focused on pain and symptom management”. The document gives three criteria by which services might identify appropriate candidates for referral.
These include the “need to meet criteria of local palliative care team”, “evidence that a person is approaching end of life/ prognosis is poor”, and “evidence of previous outcomes suggesting patients no longer for recovery focused care” [sic].
The Royal College of Psychiatry, called for the repeal of the “really alarming” guidance.
A spokesman for the NHS in the East of England said: “This document is under review and we will take into account any relevant expert guidance.”
