Moved by
Baroness Finlay of Llandaff
287: After Clause 148, insert the following new Clause—
“Dispute resolution in children’s palliative care
(1) This section applies where there is a difference of opinion between a parent of a child with a life-limiting illness and a doctor responsible for the child’s treatment about—
(a) the nature (or extent) of specialist palliative care that should be made available for the child, or
(b) the extent to which palliative care provided to the child should be accompanied by one or more disease- modifying treatments.
(2) 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); and
(c) 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.
(3) In the application of subsection (2) the hospital authorities—
(a) must involve the child’s specialist palliative care team so far as possible; and
(b) may refuse to make medical data available if the High Court grants an application to that effect on the grounds that disclosure might put the child’s safety at risk having regard to special circumstances.
(4) 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 of significant harm to the child.
(5) Nothing in subsection (4) requires, or may be relied upon so as to require, the provision of any specific treatment by a doctor or institution; in particular, nothing in subsection (4) —
(a) requires the provision of resources for any particular course of treatment; or
(b) requires a doctor to provide treatment that the doctor considers likely to be futile or harmful, or otherwise not in the best interests of the child.
(6) In this section—
“child” means an individual under the age of 18;
“health service hospital” has the meaning given by section 275 of the National Health Service Act 2006 (interpretation);
“parent” means a person with parental responsibility for a child within the meaning of the Children Act 1989.
(7) Nothing in this section affects the law about the appropriate clinical practice to be followed as to—
(a) having regard to the child’s own views, where they can be expressed; and
(b) having regard to the views of anyone interested in the welfare of the child, whether or not a person concerned within the welfare of the child within the meaning of this section.”