Charlie's Law Blog

New Year Update

The Charlie Gard Foundation sets up for Success in 2022!

It has been a tumultuous year with the spotlight firmly on the pandemic. Yet, despite Covid’s best attempt to derail Charlie’s Law – the crucial legislation is firmly back on track. After the suspension of Friday sittings in the House of Commons, we were unable to push for Charlie’s Law to have its Second Reading. Instead, the Foundation looked for alternative avenues to positively advocate for Charlie’s Law.

This started with a roundtable event with key stakeholders, including the Medical Mediation Foundation, the British Medical Association (BMA), Peers, MPs, and medical ethicists. We used this opportunity to finalise the text of Bill and create continuity amongst key stakeholders before ramping up our engagement with parliamentarians and government.
The Foundation then, using the finalised version of Charlie’s Law, met with civil servants from the Ministry of Justice to discuss expanding legal aid to parents of critically ill children when cases reach litigation. The meeting highlighted the need for quicker and guaranteed support for parents in this situation; existing avenues are not fit for purpose given the time-sensitivity of such cases. The Department is looking to consult on its legal aid policy, and they will invite the Foundation to submit evidence in 2022.
The Foundation also met with the Department for Health and Social Care civil servants to discuss social care reform and the need to include Charlie’s Law. Hence, parents and doctors get the support they need to de-escalate conflicts before reaching litigation, preventing the traumatic experience, the NHS money in legal fees, and precious time between parents and their critically ill children.

We also submitted evidence to various consultations to promote Charlie’s Law and the important changes it wants to enact. This included the Human Rights Joint Committee’s inquiry on ‘Protecting human rights in care settings’, the Health and Social Care Committee’s inquiry on ‘NHS litigation reform, and the Royal College of Paediatrics and Child Health’s (RCPCH) consultation on External Second Opinions.

In the lead up the Christmas, the Foundation ramped up its parliamentary engagement through successfully tabling Charlie’s Law – with the help of Emma Hardy, Labour MP for Kingston upon Hull West and Hessle – as an amendment to the Health and Care Bill, the government’s flagship health legislation. Through our engagement, we brought Charlie’s Law to the Minister for Care and Mental Health, Gillian Keegan MP’s attention which we are following up with a meeting request in the New Year. Furthermore, the Health and Care Bill is returning to the House of Lords in the New Year, where we have liaised with Baroness Finlay of Llandaff – a previous president of the BMA – to table Charlie’s Law an amendment once again. This critical exercise will raise Charlie’s Law amongst policymakers in parliament and set the Foundation up for success in 2022.

Finally, we have a second meeting with National Clinical Director and Deputy Director for NHS England Children & Young People, Dr Simon Kenny and Kate Pye. The meeting will be another opportunity for each of us to work collaboratively and discuss our plans for 2022 to support critically ill children and their parents.

We are extremely excited to hit the ground round running in 2022 and can’t thank our supporters enough.