Helping Jonah - Helping Others

This is such an important issue which desperately needs addressing. We felt helpless, alone, guilty and under immense pressure trying to keep our family supported. We had NO support whatsoever from anyone, outside of family and friends, when it came to Jonah's two siblings.

There was, and I presume still is, nothing in place to support siblings when families are going through such devastating life changing times. It was literally a case of get up and carry on as normal whilst all this is going on. It's heartbreaking for everyone 💔

I sincerely hope this amendment is passed and applaud the people behind this crucial campaign.

Today we are announcing 𝗔𝗺𝗲𝗻𝗱𝗺𝗲𝗻𝘁 𝟵𝟬 𝘁𝗼 𝘁𝗵𝗲 𝗖𝗵𝗶𝗹𝗱𝗿𝗲𝗻’𝘀 𝗪𝗲𝗹𝗹𝗯𝗲𝗶𝗻𝗴 & 𝗦𝗰𝗵𝗼𝗼𝗹𝘀 𝗕𝗶𝗹𝗹 in the House of Lords, tabled by Baroness Tanni Grey- Thompson. For too long, parents of critically ill children have endured everything life can throw at them. But it isn’t only their child’s illness that breaks families. It’s being forced to fight a system that does not work for them.

Today, under the Parents Deserve Better campaign, 𝗪𝗲 𝗮𝗿𝗲 𝗿𝗲𝗹𝗮𝘂𝗻𝗰𝗵𝗶𝗻𝗴 𝗛𝘂𝗴𝗵’𝘀 𝗥𝗲𝗽𝗼𝗿𝘁. This work began under the previous Government but was halted when the election was called leaving families in limbo once again.

We are now asking for three key areas to be formally investigated, reported on, and debated in both Houses of Parliament at no cost to the taxpayer to fix where the safety net is broken:

• A structured, proactive mental-health pathway for the whole family when a child is diagnosed: including GPs and community teams, not just hospitals.
• A systematic review of the “forgotten children”, siblings who suffer in silence while parents are forced away to care for a critically ill child.
• A full examination of the financial impact on parents, who are pushed to the brink while trying to hold their families together.

There is a devastating cliff edge in care once a child is no longer a newborn.
Support falls away. Families are left alone. The net is broken and it needs fixing.

🗓 Amendment 90 will be heard on Monday 19th January 2026
📅 Exactly two years to the day since we launched our Private Member’s Bill with Sir Oliver Heald.

This is not about politics. It is about parents. And it is long overdue.

Support our campaign for better www.parentsdeservebetter.com