Currently, there is no statutory right to leave or pay when a child is diagnosed with a critical illness, is hospitalised, or undergoing treatment. Parents are pushed to breaking point, forced to leave work to care for their child, and be by their side in hospital.
Amendment 90 to the Children’s Wellbeing and School’s bill, tabled by prominent disability campaigner and Loughborough University alum Baroness Tanni Grey-Thompson is calling for three key reforms:
- Better access to financial support
- Better mental health support
- Better recognition of the impact on siblings
Speakers at the reception included Members of Parliament Chris Hincliffe and Mark Tarney and Brentford FC – the first Premier League club to adopt the principles of Hugh’s Law into their employment practices.
Dr Coveney’s research with parents of children with rare conditions, particularly those diagnosed with Noonan Syndrome evidences the realities of caregiving for a seriously ill child. Medical care dominates daily life, repeated planned and emergency hospitalisations and hospital appointments are a constant presence, and periods of prolonged in -patient stays become the norm for these families. Some key research findings include:
Better financial and employment support is desperately needed
The research found that many parents felt they had no other option than to stop working to care for their child. Others were forced by employers to take unpaid or annual leave to spend time in hospital with their child.
“It caused a massive break in my career - it's been six years impact on my career. As it became a long running thing, [it was] hard for me to keep going in that level of role and still be able to take the time off that I needed” (Louise, mother to a 6 year old son with Noonan Syndrome)
“I was with him all the time … the longest was in 2020, when he was in hospital for eight weeks with endocarditis. They have a bed for the parent, so I just stayed there with him. We were kind of a team” (Laura, whose son died aged 18 from complex cardiac issues)
Formal referral pathways for mental health support are necessary
The research illustrates how the mental health impacts of caregiving for an ill or disabled child are vast and underrecognized. Participants reported high levels of stress, anxiety, exhaustion and sleep deprivation. The research indicates that dedicated mental health support is required, not just at the point of diagnosis, but on an on-going basis to help families cope with repeated traumatic experiences and ongoing demands of caregiving.
“It's impacted every fibre of my being …the stress it puts on you. My sleep has definitely been affected and I've had migraines start and that's been really debilitating for me”. Meg, mother to a 6 year-old daughter with Noonan Syndrome.
The impact on siblings is overlooked
Brothers and sisters of children with complex chronic and serious health issues become young carers as well as siblings. They build a unique bond by take on caring responsibilities for their sibling, as well as being socially and emotionally impacted by the condition themselves, missing out on social opportunities, visiting their sibling in hospital, worrying about their sibling’s health and providing them with vital friendship and emotional support. In turn, we need better support systems for siblings of chronically and seriously ill children to support their needs.
Father to a 6 year old daughter with Noonan Syndrome: [Sibling] has become a more mature empathetic person as a result of it. We will never quite know how challenging it's been for her and the fears around her sister and her healthcare … But they really love each other, there's a real sisterly bond.
Dr Coveney wrote a policy briefing, specifically highlighting her research on Noonan Syndrome. Policy recommendations include:
1. Co-ordinated and widespread advocacy activities for greater and sustained impact to build political momentum and raise awareness of NS in medical, educational and social work settings.
Public and political awareness of Noonan Syndrome is low and political momentum or supportive policies are lacking to ensure families receive the support they need.
2. Greater financial investment across medical, health and social services to reduce the burden of fighting for scarce resources felt by parent -carers.
Policy development designed to improve state support for families with rare genetic conditions like NS should encompass mental health, social care, education, employment and long- term care.
3. Provision and funding for access to respite services, days out, short breaks and the recognition that some families require term- time holidays.
Our findings point to the need for greater recognition of the repeated and cumulative emotional impacts that caregiving has carers. This accrues over time and can significantly impact on their mental and physical health and wellbeing. Socially, they could be better recognition of the importance of family’s being able to enjoy time together to make joyful memories that counterbalance the challenges they face and help them live well with this rare genetic condition.
Read the full report here:
Coveney, Catherine; Salem, Basma (2025). Living with Noonan Syndrome: Parents’ experiences of caring for a child with a rare genetic condition. Loughborough University. Report. https://hdl.handle.net/2134/28507127.v1
Recent publications:
Coveney, C. (2025). Out of Sync? Rare Genetic Disease and the Chronopolitics of Care. Sociology of Health & Illness, 47(8), e70106.