Eliza was born in 2021 to her mother, Naomi, and her father, Mark. She lives at home in Hempshill Vale with her older sister, Bethany, who is six.
Naomi says they knew Eliza’s life would be different soon after her birth, having had to be resuscitated. After a long stay in Nottingham University Hospitals’ neonatal intensive care unit, she now lives with profound and complex disabilities.
Eliza, four, has level five cerebral palsy and is non-mobile, doubly incontinent, and relies on feeding tubes, hoists, and special equipment to live.
She currently has three personal assistants who assist Naomi and Mark in caring for her.
Nottingham City Council’s whole life disability team visited the family in August to reassess Eliza’s care needs, after which it was proposed the support they receive would be reduced.
The family says it is expected the hours of care will be reduced by 11 hours a week, which will put their ability to care for Eliza at jeopardy.
Mark was forced to give up his job as an architect to help care for Eliza, while Naomi currently only works 18.5 hours a week as an occupational therapist.
“It is about giving us a break as carers, and enabling us to meet the needs of our other children, so we do not come to them later in crisis,” Naomi said.
“We didn’t expect the constant battle with health and social care services for the support that allows us to care for her safely at home.
“We are going above and beyond normal parenting. They are pushing carers to breakdown, and this leads to crisis. They want to wait until people are at the brink of collapse before they do anything.”
Mark added: “They have left us in limbo. We have yearly reviews so we think: when is the next person coming to tell us we do not need this care?
“It is about giving us a break as carers so we do not come to them later in crisis.”
An email sent to the family from a council officer states that some care was mistakenly given at an earlier date.
Care is typically jointly funded by both the council – which funds social care needs – as well as the Nottingham and Nottinghamshire Integrated Care Board (ICB) – which commissions health-related services across the city and county.
Health needs are met by the ICB, while social care needs are met by the council – offered as part of a joint-arrangement between the two organisations.
The email states that at the time of an earlier assessment the offer of support from the council’s social care services was made in response to an unmet health need – not a social care need.
This year a decision was therefore made to withdraw it.
Naomi and Mark are now calling on both the council and the ICB to rethink their approach to children’s social care for a “smarter, more human approach”.
“Instead of debating which service funds which need, agencies should take joint responsibility, recognising that children like Eliza don’t fit neatly into boxes labelled ‘health’ or ‘social care’,” Naomi says.
“We’re being bounced around between health and social care, being told ‘that’s not our remit’, while Eliza’s care and safety and our ability to continue caring for her safely hangs in the balance.”
Naomi and Mark also fear decisions are being made for financial reasons.
The reassessment comes at a time when the Labour-run council announced it would be reviewing high-cost social care packages in a bid to cut costs in its budget.
The NHS in Nottingham and Nottinghamshire is also facing significant financial challenges due to rising service demand, inflationary pressures, and increased operational costs across the system.
The Nottingham and Nottinghamshire ICB has already made £252 million in savings across the system in the 2024/25 financial year.
This financial year, which began in April, it is planning a further £282m in savings.
“Removing Eliza’s 11 weekly hours of support might look like a small saving on paper,” Naomi said. “But in practice it risks putting a stable, safe family into exhaustion – and triggering far more expensive emergency interventions later.”
Eliza’s care is currently managed through a personal budget, and is coordinated by Naomi and Mark alongside her three personal assistants.
Naomi says they have worked with the family for a long time, and understand her care needs, her routines, and her personality.
However she says the council told them they should give the personal assistants four-weeks notice of the impending cuts to their working hours.
“That’s how care staff are treated,” she says. “Yet authorities wonder why recruitment and retention is in crisis.
“If staff are treated as disposable, how can we build the trust and continuity families depend on?”
She said the council and ICB need to “work with families” – and not “do things to them” with frequent reassessments where their own voices are little heard.
“It is coordinated by us as Eliza’s parents, not a care agency with all the costs and bureaucracies involved,” she added, stating that joined-up, flexible support that adapts to family life is needed.
“Every hour of support helps Eliza thrive and prevents burnout or breakdown for us as her parents.”
The family has now submitted a formal complaint to the council, and they are awaiting a response.
Naomi says she wanted to highlight the plight of carers ahead of Carers’ Rights Day on November 19.
She says under the law, councils are legally required to assess the needs of parent carers and provide support where needed.
However a carer assessment – a conversation with a council to identify and discuss the support an unpaid carer may need due to their caring role – has yet to be conducted despite having been asked for.
“We’ve both given up careers to care for Eliza,” she said.
“We’re not asking for luxuries, just for the law to be upheld and for our wellbeing to matter, too.
“For all the talk of prevention and the importance of supporting unpaid carers, decisions made in panels and board rooms, and practice on the ground, needs to go a long way in recognising and delivering this.”
Cllr Shuguftah Quddoos (Green), an opposition councillor for Nottingham City Council, said Eliza’s story highlights the human impact of fragmented and financially strained public services.
“Caring families and disabled kids are more than just numbers in spreadsheets,” she said.
“Naomi and Mark’s story is the result of councillors voting to ‘review’ high needs care packages in March. I voted against, because I know that disabled people are the first targets when ‘savings’ are made.”
A council spokesperson said: “We can’t comment on individual circumstances or ongoing complaints. In general, children’s and adults’ care packages are based on assessed needs and reviewed regularly in line with statutory guidance. Where health needs are involved, support is often jointly planned and funded with the NHS Integrated Care Board (ICB).
“Any changes to support follow a reassessment and are discussed with families, who have access to review and complaints processes if they disagree with a decision.
“Our priority is to ensure that every child and adult receives the right level of support for their assessed needs, and we work with families and partners to achieve the best possible outcomes.”
Rosa Waddingham, Chief Nurse at NHS Nottingham and Nottinghamshire, added: “We are sorry to hear that the family are unhappy with the funding that they are currently receiving for Eliza’s care.
“The local authority is responsible for funding a short breaks setting and any other social care needs.
“We have a responsibility to ensure that children’s additional health needs are met regardless of the setting they are in – including short break settings.
“We assess those needs on a individual basis using the national Children’s Continuing Care framework and work with partners to deliver the care required. This national framework allows us to ensure health decisions around funding are based on eligibility and need following a clinical assessment.
“Anyone who has a concern with their health funding can contact our Patient Experience Team.”