Two days before she died, Matilda Davis issued a plea on Facebook. Sharing a study that found more than 40% of parent-carers had considered suicide, she called for “greater awareness, action and change” in Britain’s broken social care system. “This speaks the words I can’t,” she wrote.

Matilda, known as Tilly to her family and friends, had spent years battling for support in a regime that close observers and those who rely on it often say is increasingly confusing, fragmented and difficult to navigate.

Her seven-year-old son, Jude – not his real name – has significant disabilities. She was, her friends said, an “absolutely inspirational” mother, juggling care for Jude’s five-year-old sister Lilly – also a pseudonym – alongside his appointments at therapy, physio, hospital and two schools, as well as the significant financial and administrative burden.

She cherished every moment with her children. “Tilly cared more than anyone I know,” said her sister Georgina Davis, 35. “It was what she lived for.”

On 3 October last year, Matilda, 36, was found dead in the bathroom of their home in Stratford-upon-Avon in the West Midlands.

She had killed herself a day after saying she felt “completely exhausted” by her responsibilities, and “paralysed with anxiety” about the prospect of her looming divorce from her estranged husband, who the Guardian has chosen not to name.

After Andy Burnham promised the biggest reforms to social care in a generation, experts said Matilda’s death showed how carers were being “pushed to breaking point” by a broken system.

“Health and social care services in England are failing disabled children and their parents are being left to pick up the pieces,” said Dr Siobhan O’Dwyer, one of Britain’s leading experts on family carers.

“In his speech, the prime minister acknowledged that without support unpaid carers can break. But what does it mean to break? For Matilda it meant death by suicide, it meant dying alone and in pain because services failed to fully appreciate the impact of the caring role and the troubled marriage, and it meant leaving behind the children she loved more than anything else in the world.

“That is a break that can never be healed, but it was entirely preventable. If the government really wants to stop other carers breaking, it’s going to need more than a heartfelt speech. It’s going to need real action.”

‘I won’t be here much longer’

Evidence heard at Matilda’s inquest earlier this year, including GP records and disclosures to professionals, showed a person engulfed by stress in the final weeks of her life.

Last August, she told her GP she was worried about her “ability to cope emotionally with the daily demands as a parent-carer living with a home environment, which is becoming increasingly stressful, full of anxiety and worry … My absolute focus is to ensure [Jude and Lilly] are spared the turmoil of the unrest and upset in the house.”

Matilda had struggled with her mental health since Jude became critically unwell shortly after his birth. But two days before she died, she was in the “slight depths of ruin”, she told a friend in a voice note.

“I’m just in pieces and I’m trying to hold it together with the children, but it’s so physically taxing and emotional with what I’m dealing with [Jude] alone,” she said. “I’m just breaking really. I’m just completely broken. I haven’t really got any physical strength in me.”

Matilda had given up work as an art teacher to care for Jude full time. Social workers had not carried out a family care assessment, where professionals assess what support they might need, for almost four years by the time she died. They were due to visit the following week to carry out an updated plan.

On 2 October, Matilda told her divorce solicitor the worry was “overwhelming”. “My capacity to earn is basically nothing and will be long term,” she said.

Her day-to-day life was packed with “appointments, rehabilitation, admin, emails, phone calls, transporting/commuting”, she said, which would become more complex over the coming years with Jude’s schooling and health needs.

With her marriage coming to an end, Matilda said she was “desperately fearful” about the future of the family home, as she had sacrificed years of earnings to care for Jude full time. “The estate agents will not accept me as a non-earning single occupant and I have absolutely no where else suitable to go,” she said the day before she died, the inquest heard. She said she felt “financially trapped” and that it was “both physically and emotionally relentless at times”.

That morning, her husband called social services to say he was concerned about Matilda’s mental health. He said she had expressed suicidal thoughts that morning by saying: “I won’t be here much longer and then you will all have to look after yourselves.”

Social workers are obliged to act on welfare concerns within 24 hours and visited Matilda at home at 2pm the following day, a Friday.

A note of the meeting, shared at the inquest, detailed how Matilda was “visibly upset and tearful” when they arrived and “expressed significant anxiety” about the visit.

The coroner, Deborah Sewell, noted that Matilda spoke of the “emotional and psychological strain arising from relationship conflict, financial pressures, and the ongoing divorce proceedings”. Matilda told the social workers she had hit her head on the door in front of the children that morning “as a manifestation of emotional frustration”.

Before they left the meeting, social workers suggested her husband look after the children that weekend and that Matilda stayed with her parents. She was reluctant to leave, having already expressed concern about how Jude would manage without her.

When the social workers left at 2.30pm, Matilda “appeared calm” and there was “no indication of any suicidal ideation”, the note of the meeting recorded. Minutes later, she was dead.

At the inquest in March, social workers admitted they did not ask Matilda whether she had thoughts of suicide despite knowing she was in significant distress. Nor was she directed to crisis organisations.

Neither social worker who visited her that day had undertaken suicide prevention training. When told it is best practice to ask someone directly whether they have plans to kill themselves if they have expressed suicidal thoughts, one said: “Well, I’ve not done the training.”

Asked whether they were concerned that Matilda had said a day earlier she “won’t be here much longer”, which they were told by her husband was a suicidal thought, the social worker added: “Obviously it is concerning she said that but she wasn’t using the word ‘suicide’.”

Sewell issued a rare prevention of future deaths report in April to direct Warwickshire council to make suicide prevention training mandatory for 600 members of staff.

The council said: “We extend our deepest sympathies to the family and all those affected by this tragic loss. Following Matilda’s death and the subsequent coroner’s inquest, we have implemented enhanced suicide prevention training for all social workers to equip staff with skills to identify when parents and carers need additional support and to help them to access it.

“In addition, all agencies involved with this case will participate in a review to look closely at all the circumstances leading up to Matilda’s death. The purpose of the review will be to make recommendations for improving services and support.”

‘Love does not mitigate the overwhelming pressure’

In research published in 2024 – and shared by Matilda two days before her death – the University of Birmingham found 42% of parent-carers had thought about suicide, many times higher than the general population.

Those caring for significantly disabled children are exposed to chronic levels of extreme stress that are “compounded by other factors like poverty, domestic abuse, or social isolation”, said O’Dwyer, who led the research.

She said social workers often had an “excess of professional optimism” about parents’ ability to cope with the pressures of caring for children with complex needs, particularly when they saw a devoted, loving mother – and it was often women who took on primary care responsibilities – and would think she would never act on thoughts of self-harm because she loved her children so much.

“But it is possible to love your children and be pushed to the point of suicide,” O’Dwyer said. “Love does not mitigate the overwhelming pressure of caring for a disabled child in a broken system.”

Contact, a charity for families with disabled children, said parents often reach crisis point before help was available and had to “fight for basic support”. Anna Bird, its chief executive, said parent-carers were being “squeezed from every direction: by the cost of living crisis, reduced services; and a support system that is increasingly confusing, fragmented and difficult to navigate”.

In the garden of Jude’s primary school in Birmingham, two apple trees and a rose bush have been planted in Matilda’s memory. Twenty miles away in Stratford, her friends at a family club have raised money for a bench engraved with her name and a number for the Samaritans suicide helpline.

Her sister Georgina described Matilda as “the most incredibly devoted mother”, draining her savings and driving hundreds of miles a week to get Jude the support he needed.

“She would tell me how she had to really fight to get what she wanted and needed for [Jude],” she said. “[Often talking about] how exhausting it is having to continually have to battle to get the provision he so needs.”

Matilda’s friend Francesca Roberts, a nursery manager, said she was constantly in awe of her ability to go “far beyond what any parent should have to do simply to access proper care and support”.

“She absolutely adored her children and dedicated every part of herself to them,” she said. Matilda was “one of the most caring, devoted, and selfless people I have ever known,” she added. “She was the village that everybody dreams of having around them.”