A disregard for the humanity of those involved
Increasingly I am confronted by cases involving profoundly disabled children where the behaviour of the NHS takes my breath away. Of course, the NHS is generally spectacular when called upon to provide heroic acute care – but that is not my experience when there is a need for on-going care for chronically ill children and/or where the need is such that an NHS body must cooperate with one or more other public bodies. I am sure there are some wonderful examples of where this works – but that is not my experience, and it was not the view of Mr Justice McKendrick in a case concerning AB and her mother – a full report of which is at Cwm Taf Morgannwg Health Board v. AB [2025] EWCOP 24 (T3).[1]
Put simply AB (aged 17) was (among other things) self-harming and refusing nutrition and hydration. The relevant hospital trust applied to the court for an order that she lacked capacity to consent to medical treatment and that it was in her best interests to be artificially fed.
The judge was not prepared to grant the order at that stage, and made orders as to how the matter could be dealt with speedily. The order required a number of NHS bodies to work together, as AB had by then been discharged. The judge’s order was not obeyed and in the words of the judge ‘no public body, either in writing, or through counsel at the hearing, could tell me if it remained the case that AB had taken no hydration during the previous five days.’
The judge accepted that each public body had reasons for their failures ‘to some extent’ (para 34) but collectively they had failed to properly respect AB and her mother: that they appeared ‘to operate in silos having only regard to their own duties, without any common sense approach to the life of a child, who requires them to work together to protect her’ – and that the ‘lack of common sense thinking appears to have permitted a disregard for the humanity of those involved’ (para 35).
Sadly, this state of affairs is far from usual: public bodies that behave in this way (unlike individual applicants) get a slap on the hand (at worst) and carry on as before. If this is routine, why then do I think it important to draw attention to this case? The reason is for what follows.
The judge cited a letter from the mother as a ‘powerful, maternal plea’ that ‘should be re-read by those treating AB and those advising and representing the public bodies’. It is in fact a cri de cœur that we all need to read and read. I have little faith that it will impact on the managerialism and the budget fixated, siloed thinking of public bodies – but I hope these words will rouse (as one of my good colleagues is want to say) an ‘Old Testament Avenging Angel’ to bring some justice and humanity to this wretched field.
I apologise for the delay in responding to the numerous different email chains I have received today. I left the house at 8am to visit my daughter in South Wales and have not long got home and seen the large volume of communication.
I have been cc’d in on multiple email chains today setting out numerous responses from the separate health boards legal teams with very little time this evening to read and understand them fully. I am deeply concerned at the lack of productive dialogue between the trusts on the most suitable way forward. In all these emails I feel that the most important issue has been forgotten and would seek to highlight it in this communication.
I read a lot about [AB] this and [AB] that in the communication from the legal teams but my daughter is more than just her initials on legal paperwork. She is beautiful (inside and out), she is highly intelligent and extremely articulate, with her whole future ahead of her. She is brilliant at art, studies hard at school, and dreams of one day being a paediatric nurse. She is a 17 year old CHILD currently fighting the most horrendous battle of her life that no child should have to face.
My daughter is more than an NHS number, a council statistic or a balance figure on a budget spreadsheet. She is my child and I will fight with everything I have in me to keep her alive.
I am not oblivious to the fact that budgets are tight and there is not an endless pot of money however I need my child’s best interests to be at the forefront of the decisions made about her care. I am a mother of 6 children with no legal or medical background, trying to spend as much time as possible supporting my very sick child whilst also holding a family of 8 together. Yet every day I am forced to spend hours on the phone or replying to emails because the trusts can’t seem to work together to put my child’s best interest first. I have waited days for paperwork that I am entitled to receive and have repeatedly had to chase solicitors for court orders and documentation. My daughter has not taken on board any nutrition since leaving Hereford hospital and has not had any hydration since Saturday 5th July. She has lost 2.1kg in the last 4 days and all her vitals are deteriorating. This is terrifying as a mother to witness and be powerless to change. My main focus right now should be her fragile health yet I am left to try and deal with trusts who can’t work together to come to a resolution.
The last 2 weeks have been some of the most stressful weeks of my life. My daughter may be in [the Unit] at the moment but at some point she will be back in Powys and will more than likely have to be treated again at Hereford County Hospital. With 4 counties involved in her care I fail to see how we can progress effectively without the assistance of the Court of Protection as none of the health boards involved seem to be able to agree on how to ensure my daughter best interests are protected.
I am extremely grateful to [the Unit] and the office of the official solicitor who are trying their hardest to help my daughter at the moment but this is not something they can manage alone. They need the health boards to come to an agreement which ensures my daughter does not suffer due to geographical boundaries and council budgets.
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[1] Cwm Taf Morgannwg Health Board v. AB [2025] EWCOP 24 (T3) at https://www.bailii.org/ew/cases/EWCOP/2025/24.html
Photograph of ‘Draw am yr Eifl’ by Richard Jones -@lluniaurich
Posted 18 July 2025