We are carers who looked after loved ones through their long battle with anorexia nervosa (AN). Unexpectedly we find ourselves affected by the provisions of the Terminally Ill Adults (End of Life) Bill, which we are compelled to oppose. AN sufferers are directly impacted by this bill as it stands. Our failing health care system, for many reasons mostly stemming from grossly underfunded services, is too often unwilling to care for them. A growing number are being deemed too sick to treat and excluded from specialist care, placed instead on so-called “palliative pathways”, even though eating disorders are not terminal illnesses in themselves and there are no recognised palliative approaches for them. To facilitate this, a diagnosis of “terminal” AN or malnutrition is emerging within certain NHS trusts. Hopelessness and depression are core symptoms of untreated AN, which are likely to be exacerbated by a breakdown in trust following neglect and a lack of compassionate, effective professional care. Patients receiving these diagnoses are, as a result, at risk of seeking to end their lives were the bill to be enacted. There is nothing in the bill’s drafting that precludes this. Yet, with the right care those patients would recover. Eating disorders are treatable illnesses and recovery is possible regardless of age, severity or duration of illness. Our unique perspective is less understood and elicits less public sympathy than stories of protracted and painful deaths from other illnesses, perhaps because AN itself is so often misunderstood and trivialised. Our view is informed by our struggle to receive adequate care for our loved ones. In the early stages of illness, when expert intervention would be most effective, we are told our loved ones are at this point “not sick enough” for care given that specialist services have been overwhelmed for years. Between “not sick enough” and “too sick” we are often left to our own devices, attempting to renourish and keep them alive at home, often at the expense of family and work life. There is little support from the NHS. It is an onerous responsibility; lack of insight into the illness and opposition to treatment are part of its core pathology. Mealtimes often last for hours and resistance can be strong, sometimes violent. We are mostly alone at home doing work that, with proper NHS help, would be carried out by a multidisciplinary team of clinicians. We experience echoes of the isolation, fear and desperation our loved ones endure through their illness. Despite our and their best efforts, our loved ones frequently become extremely unwell, a situation which can last for years. Some of us have been lucky. Our loved ones eventually recovered. They are productive members of society, often excelling in their chosen paths, living lives that seemed impossible to them when they were in the grip of AN. Some had articulated a desire to die; today they are thankful we helped them overcome that desire. Others among us have been so let down by the NHS that our loved ones have died from medical complications or by suicide. Having lost our loved ones to AN, we are determined to fight for others to receive proper care, to recover and to live to their full potential. Some among us continue to fight every day to restore our loved ones to health. Our stories are not the exception; they are the norm in eating disorder care. Increasing numbers of neglected patients are being abandoned by the NHS. Those deemed to have enduring and severe AN (the “too sick”) are being refused life-saving care. Some are referred to the Court of Protection for clarification of their rights as patients and the extent of the NHS’ obligation to care for them. Questions around mental capacity, best interests and whether AN treatment can ever be deemed futile – all of which are central to the bill’s scope – have proved difficult for the Court to determine. The perilous choices at the heart of these cases would be exacerbated by the enactment of the bill, as those same clinicians who have devised the controversial and disputed “terminal” diagnosis, would be likely, under the terms of the bill, to raise the possibility of assisted death with very ill and vulnerable patients whom they consider to be beyond help. Enormous responsibility is placed on carers of AN sufferers to look after them and fight for their survival, yet decisions on assisted dying could be made by our cognitively impaired loved ones under the bill without clinicians consulting us or involving us in any way. These very real concerns have been raised with our MPs and the Committee, but were met with inaction, no doubt from a genuine failure by the bill’s supporters to grasp how it would apply to severely ill patients with AN. None of the amendments proposed to the Committee to protect AN sufferers was accepted. Accordingly, it is a matter of fact that patients diagnosed as in a “terminal” phase of AN or malnutrition will be able to seek to end their lives under the bill’s provisions. This is already happening in other jurisdictions which permit assisted dying, including in Oregon, where it is only allowed in cases of terminal illness. It is extraordinarily difficult as we care for our loved ones to hold on to hope for their recovery when they themselves feel hopeless. We find that clinicians often do not hold out much hope either. Hope, along with compassion and effective care, are integral to recovery. Introducing this bill into our hopeless, failing healthcare system would be disastrous for sufferers and their carers. In the depths of our loved ones’ suffering, with the exhaustion of caring for them, the option of assisted dying would add an additional obstacle to maintaining hope that it might be difficult to persuade them to resist, no matter how much we love them. All AN sufferers can and should recover with the right care. We are grateful beyond measure that assisted dying for our loved ones has not until now been an option. In the current context of the NHS eating disorder care service crisis, we are concerned that AN sufferers might well end their lives under the bill’s provisions, rather than receive specialist treatment to help them recover. By voting in favour of the bill at its third reading you would be agreeing that the deaths of severely ill AN sufferers, an unintended consequence of the bill, are acceptable collateral damage, a position we regard as morally and ethically unacceptable.

The assisted dying bill is not safe for those affected by eating disorders

My daughter has been "in recovery" from Anorexia Nervosa for nearly 6 years now. She is now healthy, eats normally and is well. I cannot forget how difficult getting the right treatment was back then, I understand it's worse now. It is utterly shameful that AN can be classed as "terminal" when it is no such thing and recovery is possible for all. My heart goes out to parents and carers of people with an eating disorder. It's the hardest thing I've ever done and hope often seems naive, yet you must never lose it. The "assisted dying biil" is an awful, bodged piece of legislation. I hope it never gets enacted in its present form.

Employed

Level 3 Change Maker

My sister has suffered with anorexia nervosa for 44 yrs. She is now 62. The appalling care, or lack of it, over the years has entrenched her illness and contributed to additional severe OCD. We saw our parents go through hell trying to cope with no professional support. We lost Mum when she was 68, there is no doubt stress contributed to her early death. My well sister and I are now left to cope with her. Her team have given up on her and it is documented in her notes that “ she is frail and may succumb, discussion to be had with team to withhold treatment ( she wasn’t getting any !!) This utter negativity demotivated her. She was dumped in care homes and lurched from crisis to crisis that we had to sort out including being found unresponsive in her flat and numerous other suicide attempts. She has lung cancer as weight increase to facilitate an operation to remove the tumour was ignored by her team. They encourage family disharmony. This often pushed us away, facilitating her illness but also giving them the opportunity to hide poor care using confidentiality and hiding behind a vulnerable patient. We genuinely believe had she had decent care she would have a life now. Our family would not have been put through hell. We feel they are just waiting for her to die. The Assisted Dying Bill is a gift to heartless medical “professionals”

Retired

Level 1 Change Maker

The comments on this letter demonstrate how getting the right care for eating disorders has never been easy and as the numbers of affected people grow and resources remain scare it only gets harder. This is what we should be focusing on - holding the NHS to account for its failure to look after our loved ones properly and ensure the full recovery that they deserve. The Assisted Dying Bill is not intended to apply to people with anorexia but it does in an increasing number of cases. Sadly, not only does the NHS fails those with anorexia, so also do many of our politicians. The numbers of people being diagnosed with so-called "terminal" anorexia and discharged from specialist care is increasing. The select committee on Assisted Dying trivialised the risks this bill poses to this very vulnerable group of anorexia patients; Kim Leadbetter insists they are not included in the bill and/or that the numbers affected would be low, despite all the evidence to the contrary. I am neutral on assisted dying, but to introduce a bill into the current NHS environment is dangerous. We need to devote NHS resources to getting people better before we implement systems allowing or encouraging them to die.