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Capacity in the context of Prader-Willi syndrome

Date:30 JUL 2018
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Private Client analysis: Ella Anderson, barrister at Spire Barristers, discusses the practical implications of the judgment in Re FX [2017] EWCOP 36 – the first ever reported decision to consider questions of capacity in the context of Prader-Willi syndrome, a rare genetic disorder which causes a range of physical, learning and behavioural difficulties.

What are the practical implications of this case?

This was an interesting case, which provides an important reminder of the necessity of faithfully applying the tests and principles contained within the Mental Capacity Act 2005 (MCA 2005) and developed through case law.

The tests and principles include:
  • a person must be assumed to have capacity unless it is established that he or she lacks capacity (MCA 2005, s 1(2))
  • the person must understand the salient information—it is not necessary for them to comprehend all peripheral detail (LBL v RYJ [2010] EWHC 2665 (COP), [2011] All ER (D) 290 (Feb) and CC v KK and STCC [2012] EWCOP 2136, [2012] All ER (D) 53 (Oct))
  • the bar (ie the test of capacity), including in relation to issues such as residence, must not be set too high—to do so would run the risk of discriminating against persons suffering from a mental disability (Baker J in PH v A Local Authority and Z Ltd [2011] EWHC 1704)
  • a person is not to be treated as unable to make a decision merely because he or she makes an unwise decision (MCA 2005, s 1(4))
  • caution must be applied against being drawn to an outcome that is more protective of the person, leading to a failure to carry out a ‘detached and objective’ capacity assessment (see A Local Authority v TZ (No 2) [2014] EWHC 973 (COP))
  • capacity and best interests must not be conflated (see CC v KK and STCC)

After a decade of MCA 2005, the application of these principles seems obvious, but it is not uncommon for assessors to ‘fall down’ in this regard, by failing to properly consider and apply them or by failing to evidence that they have done so by way of a proper analysis.
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A word on expert evidence

Expert evidence can of course be extremely useful to the court in determining various matters, including capacity. However, this case provides an important reminder that while the expert advises, it is the court that decides (per Cobb J in WBC v Z and Others [2016] EWCOP 4, [2016] All ER (D) 149 (Jan)).

Social work professionals are often uniquely placed to provide valuable evidence and the value and importance of their professional judgments should not be under-estimated.

Social workers may have more experience in conducting capacity assessments than some experts and they often have the advantage of being able to spend more time with an individual, as opposed to experts who commonly base their evidence on a single visit. Developing a more established relationship and a rapport may allow a person to ‘open up’, allowing more opportunity to explore the relevant information.

While experts can bring specialist knowledge and insight, the evidence of social work professionals who faithfully and rigorously apply the principles of the MCA 2005 remains invaluable in Court of Protection proceedings.

What was the background?

This case concerned a 32-year-old man (FX) with Prader-Willi syndrome (PWS). An application was made on his behalf, pursuant to the MCA 2005, s 21A, to challenge the standard authorisation granted by the local authority. The application was brought on the basis that the qualifying requirements within the MCA 2005, Sch A1 were not met (namely the mental capacity and best interests requirements).

During the course of the proceedings, FX moved to a second care home, a move with which he agreed. There was also a suggestion that he may move again, to a specialist placement, though FX was against this (in the event, this was not an available option, as it was not yet open to admissions).

The issue for the judge was whether FX had capacity to make various decisions.

Throughout the proceedings, FX asserted his capacity to make his own decisions in relation to his residence, care, contact with others and finances. There was no dispute that he lacked capacity to litigate the proceedings.

At the final hearing, it was not argued by any party that he lacked capacity in respect of contact. The court focussed primarily on the evidence relating to FX’s capacity to make decisions about his residence and care.

What did the court decide?

The court heard from two witnesses with opposing views. The first witness, Professor Holland, was an independent expert, with impressive credentials in the field of PWS, being both psychiatric adviser to the UK PWS Association and president of the International PWS Organisation. He is a consultant psychiatrist specialising in the field of intellectual disabilities and is Professor Emeritus in the Department of Psychiatry at the University of Cambridge.

The second witness was an advanced social work practitioner from the local authority with whom FX had developed a positive relationship.

The court identified a number of issues with Professor Holland’s evidence:
  • there had been a failure to conduct a proper analysis of the presumption of capacity;
  • the basis of Professor Holland’s opinion was one-third assessment time with FX, one-third general knowledge of PWS and one-third from records provided to him, which were over a year old. Professor Holland himself acknowledged the limitations this placed on his assessment and indicated his preference would have been to spend more time with FX;
  • Professor Holland had set the bar quite high during his assessment of FX (again, acknowledged by Professor Holland himself);
  • Professor Holland’s obvious knowledge of PWS and great commitment to improving the lives of those who suffer from it had led him to conflate best interests with capacity;
  • there was no consideration of whether any of FX’s reported actions were unwise decisions rather than indications of lack of capacity.
Perhaps unusually, Professor Holland accepted that his opinion should be treated with a degree of caution.

In contrast, the judge noted that the social worker:
  • had the advantage of being able to meet more extensively with FX (four face-to-face meetings and two telephone calls);
  • was able to have more productive discussions with him;
  • conducted her assessment from the correct starting point of presuming that FX had capacity and applying the relevant statutory framework and guidelines.
There was some discussion during the evidence in relation to the ‘relevant information’ as set out in the case of LBX v K and L [2013] EWHC 3230, [2013] All ER (D) 298 (Jun) and Professor Holland confirmed that while he had not specifically addressed these features with FX during his assessment, he would expect FX to be able to understand it.

The judge noted that FX was not required to decide between two options—the only currently available option for his residence being the placement in which he was residing.

While not explicitly stated, the judge’s conclusions show that she accepted the evidence of the social worker. Ultimately, the court concluded that FX did have capacity to make decisions about his residence and care.

Interviewed by Susan Ghaiwal.

This analysis was originally published on LexisPSL Family (subscription required). Click here to request a free 1-week trial