NHS should consider protein-control treatment for PKU child

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.​

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

 

New podcast on radicalisation

Just posted: Marina Wheeler QC in conversation with Rosalind English about efforts to preempt and limit the influence of extremist materials on children in the family courts. In this interview Marina also discusses the implementation of the government’s counterterrorism “Prevent” strategy against adults who are suspected of starting down a pathway towards terrorism but who have as yet committed no crime. The podcast is now available on iTunes as Episode 8 in our series.

To listen, click on the Law Pod UK banner on the top right hand of the home page.  You can access this and other free episodes of Law Pod UK, including David Hart QC on the Brexit Bill and its implications for the environment. Read more about David Hart’s concerns about the potential loss of right to sue for breach of EU law under the rule in Francovich in The Times: https://www.thetimes.co.uk/article/brexit-bill-will-remove-right-to-sue-government-750dhfjj3?shareToken=09ea60e3150edafe920c43e542df0351

Send me your burning human rights questions!

Calling all 15 to 24 year olds! For International Youth Day this Saturday 12 August I will be answering your burning human rights questions on video. This will be posted on RightsInfo and UK Human Rights Blog’s Facebook and Twitter.

Please submit these by 12pm tomorrow (Wed 9 August) by:

Prevent Duty Guidance withstands “clamorous” criticism – Marina Wheeler QC

R (Salman Butt) v Secretary of State for the Home Department [2017] EWHC 1930 – read judgment

In the wake of the London and Manchester attacks, the government’s counter-terrorism strategy is increasingly in the news and under scrutiny.  Radicalisation is  a difficult concept to map on to a system like ours, which separates the definition of criminal behaviour and punishment from civil sanctions. In this week’s podcast, Marina Wheeler discusses some of the ways the law is trying to cope (Law Pod UK Episode 8, available free on iTunes). She and others from 1 Crown Office Row will be discussing this and related issues at a seminar on Monday 11 September. 

At the end of July 2017, Mr Justice Ouseley upheld one element of the government’s counter-terrorism strategy – the Prevent Duty Guidance to universities (and other further and higher education bodies) which aims at “stopping extremists from radicalising students on campuses”.  He also rejected a complaint that the work of the Home Office’s Extremism Analysis Unit (EAU), breached the Article 8 privacy rights of the claimant, Dr Salman Butt.

We posted a summary of this ruling last week. 1 Crown Office Row’s Oliver Sanders and Amelia Walker represented the Secretary of State. Paul Bowen QC and Zahra Al-Rikabi represented Dr Butt.

In 2011 the Strategy was revised to cover the journey from extremism towards terrorist-related activity (including by the far-right). This attracted criticism, examples of which were collated and presented to support the claimant’s challenge to the lawfulness of the measures.  But Ouseley J dismissed all heads of claim, observing that he was

not concerned with whether some oppose the CTSA, or regard the Prevent Duty as counter-productive or have made it so, deliberately or through misunderstanding it.

What was decisive in this case was the absence of evidence that the Prevent Duty Guidance had had a chilling effect on free speech or academic freedom, as claimed.  The Prevent Duty Guidance, under section 26 of the CTSA, only came into force in 2015.  As those who apply it gain experience and confidence, they will make better judgments. But there will always be some mistakes. One way to avoid these is to have constructive discussion about the process, informed by evidence, not drowned out by “clamorous” criticism. Continue reading

Extremists on campus

Butt v Secretary of State for the Home Department [2017] EWHC (Admin) 26 July 2017 – read judgment

Oliver Sanders and Amelia Walker acted for the Home Secretary in this case. They have nothing to do with the writing of this post.

The High Court has thrown out a number of challenges to the government’s efforts to prevent extremism on university platforms.

In 2015 the Home Office released guidance regarding its initiative to tackle extremism in universities under the Counter-Terrorism and Security Act 2015, CTSA.  The press release referred to 70 events on campuses featuring “hate speakers”. The claimant Dr Butt was among six named as “expressing views contrary to British values”. Continue reading

Northern Irish police officers join gay pride parade in Belfast

Marches are popular in Belfast, and now is the marching season. Since the decline of sectarian violence in Northern Ireland these displays of loyalty have ceased to attract the controversy they did. Until this week, at least, in the run up to the Belfast Pride march on Saturday 5 August.  The Irish Times reports that uniformed gardaí from the Republic of Ireland are due to join their Police Service of Northern Ireland colleagues, also in uniform, at this year’s gay pride parade in Belfast on Saturday.

The PSNI already has confirmed that for the first time its members will be permitted to parade at the Belfast Pride event in uniform. Previously they could march in civilian clothing only.

Now the PSNI has invited the Gardai to accompany them at the parade, an invitation that has been accepted. PSNI vehicles with signs reading “Policing with Pride – Hate Crime is Unacceptable – To Stop It, Report It” will feature at Pride events in Belfast, Newry and Derry.

The local press is loud with criticism of this decision, which, it is said, privileges LGBT discrimination over other forms of hate crime. Critics have  pointed out that the PSNI would be “unlikely” to allow uniformed officers to take part in a Christian march that expressed a view that homosexuality was a sin. The PSNI is governed by a code of neutrality, and they are prohibited from participating in political protests.

The PSNI are supposed to be neutral and are prohibited by their own code of ethics from participating in political activity. There is also a duty on the PSNI, under article 6.2 of their code of ethics, to treat all persons equally regardless of status.  Loyalists have claimed that there is no community that has experienced more hate crime than the Orange community, with hundreds of arson and criminal damage attacks on their halls. “But no one is suggesting that the PSNI should show opposition to these crimes by participating in Orange parades,” Jim Allister of the Traditional Unionist Voice added. Other voices from the loyalist sector have asked whether the “liberal left” would be

so supportive of the PSNI marching alongside a loyalist flute band with a banner saying “End the hatred of Orange culture – report all attacks on Orange Halls”?

The parade, which campaigns, amongst other things, for the legalisation of gay marriage in Northern Ireland, is marked as sensitive on the Parades Commission website.  For this reason questions have been raised about the practical consequences of police participation; how can the event be impartially policed when uniformed officers are amongst the marchers?

Northern Ireland is the only region of the UK where gay marriage remains outlawed.

 

 

Jackson LJ on costs in all judicial reviews: Aarhus rules to apply

 

Review of Fixed Recoverable Costs: Supplemental Report, 31 July 2017 – here

Jackson LJ is still toiling away at costs issues some 8 years after his main report. The original report changed the whole way in which the civil courts go about working how much, if anything, is due from one side to another at the end of a case – budgets being one key element. The main part of this new report concerns extending fixed costs further.

This post is about something different, judicial review. Rather different factors may come into play when you are challenging public authorities. You may have a direct financial or other interest in the outcome, or you may just think that the law needs properly enforcing against those authorities. It does not follow that the winner should recover costs on the same rules as elsewhere in the civil system. And Jackson LJ returns to the question of costs in this context in Chapter 10 of his report.

Since 2013, things have been different in the area of environmental judicial reviews. With substantial prods from the EU, things are now better off for claimants, though recent reforms have sought to put further obstacles in the way of claimants: see my post here.

So it is refreshing to read something from a very senior judge which recognises the true value of judicial review as a whole and why the costs rules need adjusting in this area for the benefit of claimants.

Continue reading