23/06/2026
🚨BREAKING 🚨 This week, we took another important step in turning lived experience into lasting change.
Alongside our work on Hugh’s Law and Hugh’s Report, we have now submitted three new proposed amendments to the Health Bill currently progressing through Parliament with the help of the brilliant Chris Hinchliff MP. The Bill is one of the biggest pieces of NHS legislation in years, making it an opportunity to improve how families are supported when a child becomes seriously ill. (GOV.UK)
The three amendments focus on areas that thousands of families tell us are currently missing:
1️⃣ Family Support Following Diagnosis
No parent should be left to navigate a life-changing diagnosis alone. Our amendment would require families to be offered practical support, information on financial help, employment rights, mental health services and a clear support plan from the earliest stages of treatment.
2️⃣ Parent Mental Health and Bereavement Support
The mental health impact on parents is often overlooked. We are proposing a duty on NHS providers to identify and support parental trauma during treatment and after the death of a child, including proactive contact and opt-out bereavement support.
3️⃣ Improved Communication Around Diagnostic Imaging
Where scans are inconclusive or there is uncertainty around a potentially serious diagnosis, parents deserve transparency and involvement. Our amendment seeks to ensure families are informed, involved and given the opportunity for timely re-imaging when clinically appropriate.
These proposals have been built from the experiences of hundreds of families we have worked with throughout experience, It's Never You Charity and the early work of The Parent Alliance UK
For too long, the focus has been solely on treating the child. Of course that must always remain the priority. But when a child is seriously ill, the wellbeing of parents and siblings matters too.
Whether these amendments are accepted or not, the conversation has now started in Parliament again . We will attempt to move these through both houses, and you know me by now, I won’t stop till we are listened to.
Real change begins when those who have lived through the system help shape it.
One child. One family. One better future at a time.
For more info please check out the bills page - https://lnkd.in/eH6Xjzms
