Written evidence submitted by The Charlie Gard Foundation (NLR0023)

The Charlie Gard Foundation is the leading UK charity supporting children, adults and their families that have been affected by mitochondrial disease. As a life-limiting illness, the charity has a particular interest in end-of-life care and resolving disputes between parents and their clinicians over their child's best course of treatment.

The Foundation is submitting evidence in light of the passing of Charlie Gard, whose parents Connie Yates and Chris Gard went through painful litigation with their healthcare professionals and the NHS over the course of treatment for their child. The case highlighted the inadequacy of current processes to prevent prolonged and distressing legal conflicts between the parents of seriously ill children and those responsible for their medical care.

What is the impact of the current cost of litigation on the financial sustainability of the NHS and the provision of patient care? 

Formal litigation doesn’t just cause substantial emotional stress for the parents and doctors alike and adds a significant financial strain. Parents and the NHS have to cover the costs of legal fees. It is the added stress to parents who have to pay for legal fees whilst going through court proceedings and losing out on their precious time with their critically ill child. For clinicians, it costs the NHS funds that they could use to improve patient care or ensure they meet existing targets like reducing the A&E wait time or tacking the treatment backlog.

Unfortunately, cases like that of Charlie Gard are not anomalies. Cases are happening every year under the radar and in the public light. The hospital responsible for Charlie’s care said it spent a total figure of £205,225 on legal fees for Charlie’s Case. And Connie and Chris had to fundraise to cover the financial cost of their legal fees. Neither parents nor hospitals can afford to run up huge legal bills, and it is crucial not to waste valuable weeks and months when treating a seriously ill child.

What are the key changes the Government should consider as part of its review of clinical negligence litigation?

The Foundation firmly believe that a single case that reaches litigation is indicative of a system that has failed parents and clinicians. In this light, the Foundation advocates for the protection of the relationship of trust between parents and medical professionals. To protect the crucial relationship the Foundation, believe the Government should consider the following changes set out in Child (Access to Treatment) Bill: a Private Member’s Bill, which the Foundation created alongside Bambos Charalambous MP, NHS professionals, world-leading medical ethicists, and legal experts to make a legal framework that would resolve disagreements between parents and medical professionals over the course of treatment of a child. The Bill, also widely known as Charlie’s Law, would propose the following key changes:

1)      First, it requires the Secretary of State to put in place measures to improve early access to mediation services in hospitals where conflict is in prospect. Mediation has been proven to be an effective way of re-establishing trust between parents and doctors and helping them work together to make the best decision for the child, but currently access to and take up of mediation services is very low. In Charlie’s case, the hospital did not offer mediation until the final days of Charlie’s life – nine months in fact after the parents first suggested it.

2)      Second, it provides for access to appropriate clinical ethics committees - so that both doctors and parents can be supported in making difficult decisions by impartial ethical experts. Very few hospitals have access to medical ethics committees, meaning that parents and doctors often face a ‘postcode lottery’ when looking to get the appropriate ethical advice. This Bill would put provision in place for committees to come together quickly when required and ensure that doctors and parents do take the step of calling for a committee at an early stage when they are faced with difficult decisions.

3)      Third, the Bill would provide the means necessary to obtain second medical opinions swiftly, ensuring that when requested parents receive access to their child’s full medical data so that those second opinions are fully informed. Currently, an ESO can only legally be requested by a clinician, but we want to put parents on an equal footing to ensure that parents can seek an external, second opinion too.

4)      Fourth, in the rare cases where cases would still reach litigation, it seeks to provide access to legal aid to ensure that families are not forced to employ costly legal representation or rely on outside interest groups to fund representation in the courts.

5)      Finally, the Bill would create a new legal test of whether an alternative credible medical treatment could cause a child ‘disproportionate risk of significant harm’ to decide whether a parent is able to seek that treatment for their child. This test would replicate the legal test already used by social services considering whether to remove a child from their parents’ care and would sit before, rather than replacing, the current ‘best interests’ test which is very broad and can be subject to a number of different interpretations. The clarity brought about by this test would in turn bring more certainty around the likely outcome of a legal decision and therefore prevent cases from ending up in court. A key point here is that no medical professional would ever be required to give care or treatment that they do not view is in the best interests of a child.

We believe that these clauses would reduce the likeliness of cases such as Charlie’s escalating to the Court, and hence save thousands of pounds on litigation fees for parents and the NHS.

What legislative changes would be required to support these changes? 

As alluded to above, the Government would have to adopt the legislative changes proposed in Charlie’s Law. This could be by incorporating the Bill’s measures into their own Bill or as an amendment to the Health and Care Bill, or the upcoming Bill on social care. Bambos Charalambous MP is also tabling the Private Member’s Bill and it has its Second Reading on the 19th of November, 2021.

In our conversations with civil servants responsible for legal aid policy, we agreed that whilst there are a handful of cases which would require access to legal aid, the introduction of mediation and ethics committees would reduce this number and the costs significantly. The aims of Charlie’s Law are not to promote litigation, but to avoid it at all costs. The Bill is about fairness and equality on the side of parents as well as the doctors. Although the Bill aims to drive conflicts into the informal arena and get everyone the correct information constructively, sometimes informal resolution fails. At that point, it is vital that the parents get a fair chance in litigation. Hospitals and doctors do not need legal aid to fight litigation, but parents in these rare cases need legal aid support to be on equal footing.

In our meeting with the legal aid team, we were informed that legal representation is currently available in the case of a critically ill child scenario, but it is still subject to merit and means tests. This would entail an economic assessment of their savings and income, and they would have to go through an application process. However, due to the time sensitivity of cases such as Charlie’s and others, quicker access to legal aid would have benefited all involved.

For the committee’s reference we have provided the clauses of Charlie’s Law below that we would want the Government to consider and we will also attach the Bill for the Committee’s reference.

Where the authorities responsible for a health service hospital become aware of the difference of opinion they must take all reasonable steps—  

(a) to ensure that the views of the parent, and of anyone else concerned with the welfare of the child, are listened to and taken into account;  

(b) to make available to the parent any medical data relating to the child reasonably required to obtain evidence in support of the parent’s proposals for the child’s treatment (including obtaining an additional medical opinion);  

(c) to refer the difference of opinion for advice to any appropriate clinical ethics committee (whether or not within the hospital) or to any other appropriate source of advice; and  

(d) where the authorities consider that the difference of opinion is unlikely to be resolved entirely informally, to provide for a mediation process, acceptable to both parties, between the parent and the doctor.  

Where the difference of opinion between the parent and the doctor arises in proceedings before a court—  

(a) the child’s parents are entitled to legal aid, within the meaning of section 1 of the Legal Aid, Sentencing and Punishment of Offenders Act 2012 (Lord Chancellor’s functions) in respect of the proceedings; and the Lord Chancellor must make any necessary regulations under that Act to give effect to this paragraph; and  

(b) the court may not make any order that would prevent or obstruct the parent from pursuing proposals for obtaining disease-modifying treatment for the child (whether in the UK or elsewhere) unless the court is satisfied that the proposals—  

(i) involve a medical institution that is not generally regarded within the medical community as a responsible and reliable institution, or  

(ii) pose a disproportionate risk to the child of significant harm.  

Oct 2021