NHS should consider protein-control treatment for PKU child

18 August 2017 by

SB, R (on the application of NHS England) [2017] EWHC 2000 – read judgment

The High Court has quashed a decision by NHS England refusing to fund the drug Kuvan for a young boy who has a condition inhibiting his ability to digest protein.

This case involves a number of important issues, such as the allocation of resources under the NHS, the extent to which courts may interfere with healthcare choices, and the role of “rights” in these decisions, including the welfare of the child. David Hart QC discusses these issues in detail with Rosalind English in the latest podcast in our Law Pod UK series; here is a brief summary.

The seven-year-old child has severe autism and phenylketonuria (PKU), an inherited metabolic disorder. The mainstay of PKU treatment is  a strict dietary regime which restricts the intake of high protein foods.  But because of his autism, SB is unable to understand and therefore abide by these food restrictions. Consequently his doctors sought funding for the drug Kuvan (sapropterin dihydrochloride), which would allow him to get a proportion of vitamins and minerals from ordinary food. If he were to respond to the drug, the levels of protein in his blood would fall below the level at which he risked irreversible brain damage. However, his consultant acknowledged that his overall development outcome would mostly be affected by the severity of his autism rather than his PKU and that Kuvan would not be expected to significantly alter or improve his behaviour.‚Äč

The funding panel accepted that SB fulfilled the conditions for exceptional need but the lack of long-term prospects for improvement meant that his application did not pass the “clinical effectiveness” test.

Andrews J found that this decision was flawed and remitted it for reconsideration, with the caveat that the funding panel may be entitled to continue to decline treatment on different grounds.

Listen to Episode 9 of Law Pod UK, available for download on iTunes

 

1 comment;


  1. This is an interesting case but one that must bring heartache to the child’s parents.

Comments are closed.

Welcome to the UKHRB


This blog is run by 1 Crown Office Row barristers' chambers. Subscribe for free updates here. The blog's editorial team is:
Commissioning Editor: Jonathan Metzer
Editorial Team: Rosalind English
Angus McCullough QC David Hart QC
Martin Downs
Jim Duffy

Free email updates


Enter your email address to subscribe to this blog for free and receive weekly notifications of new posts by email.

Subscribe

Categories


Tags


Aarhus Abortion Abu Qatada Abuse Access to justice adoption AI air pollution air travel ALBA Allergy Al Qaeda Amnesty International animal rights Animals anonymity Article 1 Protocol 1 Article 2 article 3 Article 4 article 5 Article 6 Article 8 Article 9 article 10 Article 11 article 13 Article 14 article 263 TFEU Artificial Intelligence Asbestos Assange assisted suicide asylum asylum seekers Australia autism badgers benefits Bill of Rights biotechnology blogging Bloody Sunday brexit Bribery British Waterways Board Catholic Church Catholicism Chagos Islanders Charter of Fundamental Rights child protection Children children's rights China christianity citizenship civil liberties campaigners civil partnerships climate change clinical negligence closed material procedure Coercion Commission on a Bill of Rights common law communications competition confidentiality consent conservation constitution contact order contact tracing contempt of court Control orders Copyright coronavirus costs costs budgets Court of Protection crime criminal law Cybersecurity Damages data protection death penalty defamation DEFRA deportation deprivation of liberty derogations Detention Dignitas diplomacy disability disclosure Discrimination disease divorce DNA domestic violence duty of care ECHR ECtHR Education election Employment Environment Equality Act Equality Act 2010 Ethiopia EU EU Charter of Fundamental Rights EU costs EU law European Convention on Human Rights European Court of Human Rights European Court of Justice evidence extradition extraordinary rendition Facebook Family Fatal Accidents Fertility FGM Finance foreign criminals foreign office foreign policy France freedom of assembly Freedom of Expression freedom of information freedom of speech Gay marriage gay rights Gaza Gender genetics Germany Google Grenfell Gun Control Health HIV home office Housing HRLA human rights Human Rights Act human rights news Human Rights Watch Huntington's Disease immigration India Indonesia injunction Inquests insurance international law internet inuit Iran Iraq Ireland islam Israel Italy IVF ivory ban Japan joint enterprise judaism judicial review Judicial Review reform Julian Assange jury trial JUSTICE Justice and Security Bill Law Pod UK legal aid legal aid cuts Leveson Inquiry lgbtq liability Libel Liberty Libya lisbon treaty Lithuania local authorities marriage Media and Censorship mental capacity Mental Capacity Act Mental Health military Ministry of Justice modern slavery morocco murder music Muslim nationality national security naturism neuroscience NHS Northern Ireland nuclear challenges Obituary parental rights parliamentary expenses scandal patents Pensions Personal Injury physician assisted death Piracy Plagiarism planning planning system Poland Police Politics Pope press prison Prisoners prisoner votes Prisons privacy Professional Discipline Property proportionality Protection of Freedoms Bill Protest Public/Private public access public authorities public inquiries quarantine Radicalisation rehabilitation Reith Lectures Religion RightsInfo right to die right to family life Right to Privacy right to swim riots Roma Romania Round Up Royals Russia saudi arabia Scotland secrecy secret justice Secret trials sexual offence Sikhism Smoking social media social workers South Africa Spain special advocates Sports Standing starvation statelessness stem cells stop and search Strasbourg super injunctions Supreme Court Supreme Court of Canada surrogacy surveillance sweatshops Syria Tax technology Terrorism tort Torture travel treason treaty accession trial by jury TTIP Turkey Twitter UK Ukraine universal credit universal jurisdiction unlawful detention USA US Supreme Court vicarious liability Wales War Crimes Wars Welfare Western Sahara Whistleblowing Wikileaks wildlife wind farms WomenInLaw Worboys wrongful birth YearInReview Zimbabwe

Disclaimer


This blog is maintained for information purposes only. It is not intended to be a source of legal advice and must not be relied upon as such. Blog posts reflect the views and opinions of their individual authors, not of chambers as a whole.

Our privacy policy can be found on our ‘subscribe’ page or by clicking here.

%d bloggers like this: