Posts in the ‘Supported Decision Making’ Category

Autonomy and the empowerment of the individual

Posted on: October 14th, 2014 by Jess Flanagan

This is a blog by my colleague, Joanna Burton, all about our Mental Capacity Conference on Friday 17 October at Clarke Willmott.

I am really looking forward to this event, and it marks a real step forward for our team as being experts in welfare cases in the Court of Protection. I have always been keen on sharing information and educating those who need to be aware of the Mental Capacity Act, and this event takes it one step further as we have leading experts in the world of capacity talking to us about how far we have come in the 7 years since it came into force.

Over to Jo….

On 17 October 2014 Clarke Willmott is hosting a one day conference ‘The Mental Capacity Act 2005: Promoting Autonomy and Empowerment’. Ahead of the conference Joanna Burton looks at the way legislation has evolved over the past forty years, placing individuals at the centre of the procedures that affect them.

Empowerment of the vulnerable individual lies at the heart of our work, whether that individual has capacity or is unable to make decisions relevant to his or her welfare, and whether we are acting on behalf of the vulnerable person, or for a family member, friend, carer or advocate. Professor Hugh Rickards will talk to us about his clinical experience of assessing capacity at the conference.

Over the last twenty five years there has been a gradual but consistent development in health and social welfare legislation putting empowerment of the individual at its core. The Children Act 1989 was, perhaps, the first step in this process, making the ‘welfare of the child paramount’; it is the right of the child to have contact with both parents not the right of the parents to have contact with their child.

The protection of human rights has been an important development and since the European Convention on Human Rights became enshrined into the law of England and Wales, Scotland and Northern Ireland in 1998, all individuals in the United Kingdom have their rights under that convention protected.

Under Article 8 the individual is protected from arbitrary or unnecessary interference from the state in his or her private and family life, and it can also provide leverage upon the state to provide services to ensure that P’s rights under Article 8 are not breached.

In the recent case of P (Appellant) v Cheshire West and Chester and another and P and Q v Surrey County Council [2014] UKSC 19 Lady Hale spoke of the ‘universal character’ of human rights and underlined that ‘people with disabilities have the same human rights as the rest of the human race’ She spoke further of the State’s ‘duty to make reasonable accommodation to cater for the special needs of those with disabilities’. Simon Burrows will be talking about this case, and its implications six months on.

Throughout the 1990s various pieces of anti-discriminatory legislation were passed, culminating in the Equality Act 2010. At the core of the Equality Act 2010 is the individual’s right to be treated equally and have equal opportunities irrespective of age, gender, disability, race, colour, creed or sexual orientation. Obligations lie with the employer, or the provider of services and ultimately the state to ensure that the principle is respected and acted upon.

In October 2007 the Mental Capacity Act 2005 came into force. Fundamentally the MCA provides the legislative framework to ensure that an individual who lacks capacity to make decisions is treated with the same autonomy and respect given to adults with capacity. Any actions or decisions made on behalf of P must be in P’s best interests. The Act promotes and, in certain circumstances, makes it a duty for an Independent Mental Capacity Advocate, an IMCA, to be appointed to be the voice of P. I would like to see an IMCA appointed for P when any major decision is being made, irrespective of whether other family members are willing to speak on P’s behalf. In my view an IMCA is the acknowledgement of the autonomy of P and should be a fundamental part of P’s armoury. Jakki Cowley and Sue Lee from ‘Empowerment Matters’ will be talking about their work as IMCA’s and their important research which has recently led to the publication of their ‘Guidance for Assessing Supporting and Empowering Specific Decision making’.

The Court has been at the forefront of empowering P. Jurisprudence has set the bar low for assessing capacity. Our key-note speaker, Mr Justice Baker has discussed (in CC and KK and STCC [2012] EWCOP 2136) maximising the entitlement of the individual to make his or her own decisions, however unwise they may be. Best interest decisions made by the court have tended to resist the risk averse decisions that might be made by a local authority and have enabled P to go on holiday or return home when risks may appear to others to be quite high; the case of Manuela Sykes which I discussed in May is a prime example. Mr Justice Bakerwill be our key note speaker at the conference on 17 October 2014 giving his thoughts on cases that have been before him recently.

The Court of Protection rules and procedures also place P at the centre of the case, requiring that P is served with any application to the court and that those interested in his or her welfare are also notified. In my view, however, it is an anomaly that P does not have to be joined as a party to Court of Protection proceedings. P is almost always joined in ss15,16 and s21A MCA 2005 health and welfare and deprivation of liberty proceedings, so for P to have potentially no part in proceedings where life changing decisions are being made for them, or where their liberty is at stake, this is in my view a breach of Article 5(4), Article 6 and potentially Article 8. It is our understanding that clarity on this issue is being sought as permission has been requested to appeal Sir James Munby’s recent decision in Re X and others (deprivation of liberty) [2014] EWCOP25 that P may not have to be joined in deprivation of liberty proceedings that do not fall under s21A MCA 2005. Watch this space.

Although I fully acknowledge the logistical and financial difficulties in P’s participation and representation in proceedings, in my view it is P’s fundamental right under Article 6 and rather than being brushed over, this needs to be addressed. If P lacks the capacity to litigate (and most P’s in Court of Protection proceedings do) he or she will need a litigation friend. There is a real shortage of people willing to act as litigation friend to P and the pressure on the Official Solicitor (OS) as litigation friend of last resort is overwhelming. Clarke Willmott has been in the forefront of encouraging and supporting advocates and RPRs to be litigation friends to P Sophia Roper from the Office of the OS will be speaking at our conference and we will no doubt cover this problem in discussions. Perhaps, as with the Court of Protection Panel Deputies, the court could consider setting up a panel of Litigation Friends.

The financial issue of P’s participation in the proceedings must also be considered. Court of Protection proceedings are very costly and few fall below £10,000 by their conclusion. Non means tested legal aid is only available to P in s21A MCA proceedings which challenge a DOLS Standard authorisation. Legal Aid for all other proceedings is means tested. We often act for individuals who have savings of less than £15,000, but more than the £8,000 legal aid limit. Until their savings have been whittled down in legal costs to below £8,000 we cannot apply for legal aid, and that is without taking into account a capital contribution they will have to pay if they have savings of more than £3,000. Non means tested legal aid is available for a child in child care proceedings, and we feel quite strongly that it should be available for P who lacks the capacity to litigate so that they can be properly legally represented in all proceedings concerning their life and liberty in the Court of Protection.

The Care Act 2014 comes into force in April 2015, placing “wellbeing” at its core and setting out that a local authority must have regard to “…the importance of beginning with the assumption that the individual is best placed to judge the individual’s wellbeing”. In the words of Martin Luther King ‘ It may be true that the law cannot change the heart but it can restrain the heartless. It may be true that the law cannot make a man love me but it can keep him from lynching me and I think that is pretty important, also’.

Laws and jurisprudence may not on their own change hearts but they can change practice. To properly empower our most vulnerable individuals we need to use all the resources available. Notwithstanding the austerity measures the legislation and our courts are clear that the rights of the individual are at the core of any process.

The most sensible thing I’ve said

Posted on: March 9th, 2014 by Jess Flanagan

I don’t make a habit of referring directly to clients as I firmly believe in keeping private matters private. However, I have recently had the pleasure to meet such a charming young man and “say the most sensible thing I have heard in years” to him that, at least skeletally, I want to share our exchange with you.

His history and circumstances are irrelevant but suffice to say he has had a tough time over the past 4 years, cannot walk, needs support with all acts of personal care and aspects of daily living and there is evidence of exploitation from others and risk minimisation on his part. He tells me that his illness means he doesn’t have that long left to live.

Like many people before him, this chap has been assessed by services as lacking the mental capacity to make decisions concerning where he receives necessary care and treatment and is now deprived of his liberty under a Standard Authorisation, receiving that care and treatment in a specialist placement miles from his family. The story could belong to many vulnerable adults and these outline facts are no different to many we frequently see in Court of Protection judgments.

I will be sharing these comments with the parties and the court, so if anyone who recognises these circumstances and can identify him (and I have drafted this in such a way that only those with direct knowledge of the proceedings, not even the man himself, would have any idea who I am talking about), this is information that they will see anyway.

I listened to him clearly explain his background, his worries, his current misery and wishes and I advised him that due to his vulnerability, professionals have a duty to protect him from harm and meet his needs. I then went on to advise that the relevant law was not there to wrap him “in forensic cotton wool” (A favourite quote of mine from Mr Justice Hedley, paragraph 10 Re P [2013] EWHC 50) and explained to him the decisions in KK v CC v STCC and Manuela Sykes (see posts on the Sykes judgment and reference to supported decision making) and told him that both these ladies were allowed to go home from a residential placement, at least for a trial period.

I did so to illustrate the current judicial thinking in respect of protective decision making on behalf of people who may not be able to make decisions themselves, to give him some hope and to let him know that I understood and would support him in his application to challenge his circumstances. This is when he turned to his RPR and thanked her for introducing to me and, looking me straight in the eye said how those words which I will always now carry with me and that make my hard work worth it. He knows I understand him and tells me he trusts me. Being solicitor for P is such a unique and privileged position to be in. It also carries with it a lot of responsibility, but given his response to me and how driven I feel to fight for his right to be back with his family it’s a responsibility I welcome with open arms.

CoP sterilisation order; not as paternalistic as it appears

Posted on: August 16th, 2013 by Jess Flanagan

Reading that title may cause some discomfort and re-ignite the concerns about the ‘secret court’ that places family members in prison for supporting their loved ones. But having read the judgment, I think that this case should actually herald a success for the Mental Capacity Act and the Court of Protection. I will explain why.

The press has widely reported this case since the final hearing in July/August of this year and today, the judgment has been published enabling disciples of the Mental Capacity Act 2005 to fully appreciate the rationale behind the decision made by Mrs Justice Eleanor King DBS. This judgment is important to get to grips with, especially in the wake of the Mental Capacity Act Select Committee currently hearing evidence as to how restrictive the MCA has been in practice in decision making for those who cannot, or may not be able to make certain decisions for themselves.

The Language of LD…

When reading this, I was doing so with my twitter feed running on screen and I became involved in an interesting conversation about the language used in the judgment. There was concern that the fact that the first words were ‘DE suffers from a learning disability’ was antiquated, and sparked a discussion that the language used in such judgments does nothing to empower those with learning disabilities. From my discussions, it looks like this might be an area ripe for research and it looks like something may come of it. Watch this space.

What comes across from the judgment is that DE, who does have a learning disability (as opposed to suffering from one) has an excellent support network and a lot of freedom. His parents are key to his success and are praised highly by the Judge. Perhaps in contrast to many individuals who have learning disabilities, DE has a girlfriend with mild learning disabilities herself, and is supported and encouraged to maintain that relationship. This relationship is said to be ‘remarkable and very precious.’ This is a nice sentiment, although it separates an individual with learning disabilities from people for whom having emotional and sexual relationships are the ‘norm.’

Background to the proceedings

As a result of his longstanding and loving relationship with PQ, she gave birth to DE’s child in 2010. PQ was deemed as being unable to care for her child safely, but the Family Court awarded care of the child to her parents, with whom PQ lives. She is now able to take the child out with the support of a support worker, or her parents. Sadly, due to the resultant turbulence in the Local Authority issuing Care Proceedings in respect of the child DE’s life was turned upside down, causing him considerable distress.

He didn’t appear to comprehend that what he and PQ did together led to her pregnancy and the birth of a child. His parents were concerned about not being able to properly supervise the couple to ensure that this didn’t happen again and sought medical advice as to whether he should have a vasectomy.

The evidence that came out throughout the court proceedings was, in short, that the birth of his child led to a reduction in his independence and confidence, caused his relationship to breakdown, caused him (and his parents) distress and is viewed upon by DE himself as a very negative point in his life.

Lack of capacity to consent to sexual relations

Further to enquiries made by DE’s parents, the NHS Trust sought the involvement of the Court of Protection to determine the way forward; either in ruling that DE had capacity to consent to a vasectomy, or if not, whether it would be in his best interests.

An initial question for the judge was whether or not DE had capacity to enter into sexual relations. The evidence that he lacked the mental capability to do so was accepted and agreed between everyone involved.

This sparked safeguarding concerns about the sexual relationship between PQ and DE because it is unlawful for anyone to have sexual intercourse with someone who cannot consent to sexual relations. This has recently been an issue in another case before the Court of Protection. Subsequently, the couple were supervised more stringently and resulted in a loss of freedom that DE previously enjoyed in his life. PQ felt the pressure immensely and completely withdrew from her relationship with DE, leading to further loss and his life as he previously knew it had completely changed.

The relationship did resume and it was clear that the couple wanted to continue to be sexually intimate. Work was carried out to give DE the opportunity to understand what is involved in sexual relationships and was later determined to have the mental capacity to consent to sexual relationships. Whilst this removed the safeguarding concerns and some of the restrictions on carrying on his relationship with PQ, the future needed to be considered. No one close to him wanted all the good work in promoting DE’s independence to be pushed back even further.

The judge agreed the evidence that whilst he had attained capacity to consent to sexual relations, it was accepted by all parties that he does not have the capacity to consent to contraception and the question for the judge was whether or not it was in DE’s best interests to have a vasectomy.

As part of the assessment the Judge was required to carry out to determine best interests, DE’s wishes and feelings would need to be considered.

DE’s wishes and feelings on place of residence, having another child and contraception

DE had consistently said to his long standing LD nurse that he didn’t want to have anymore children and this was supported by evidence from the parents. I am pleased to report that the Judge undertook a very rigorous analysis of DE’s wishes and feelings in respect of whether he wanted more children and whether he wanted to have a vasectomy. I am constantly urging practitioners to carry out this very same review, especially where there is evidence of capacity in some connected areas, such as in this case.

The judge, in this case, was able to satisfy herself that DE did not want another child, so in actual fact, the resulting judgment was not as draconian or paternalistic as one may have assumed from the press reports that came out before the judgment.

What I like particularly about the reasoning behind this decision is set out in paragraph 53 of the judgment:

‘I approach DE’s wishes and feelings in relation to a vasectomy with the utmost caution. DE does not have the capacity to consent to a vasectomy and that must inevitably colour the court’s approach. In my judgment the safer approach is to conclude:

1) DE is clear and consistent that he does not wish to have another child

2) DE does not have the capacity to consent to contraception; it is therefore for the court to consider whether a vasectomy is or in not in his best interests’

Best interests considerations

In determining what was in DE’s best interests on that issue, she considered whether alternative contraception could be used and decided not. Experts confirmed that whilst the operation was said to carry 0.5% likelihood of scrotal pain, that, and any other risk was out-weighted by the benefits.

The Judge went on to look at the consequences of a further pregnancy and analysed in detail what the future could hold for him in the event that she did not order that the vasectomy was in his best interests. Here she commented that whilst DE has the capacity to consent to sexual relations, and the earlier restrictions on his contact with PQ had been relaxed, there would have to be a level of supervision that no one would believe to be in his interests. If the risk of pregnancy was removed, then work could be done to increase his independence to the point that it was before PQ fell pregnant.

She later surmised that his hard earned achievements must be ‘treasured, valued and measured in the same terms as the winning of an Iron Man or completing the Paris to Peking rally would be for a person without his disabilities.’ Reverting to that level of independence was a key factor at the forefront of everyone’s minds in this matter and I think it is really indicative of society moving towards individuals with learning disabilities being empowered and supported in obtaining the most independence possible.

The law

The judge happily ensured that in making the decision to remove the chance of DE becoming a father again would not be a breach of his Article 8 (European Convention on Human Rights) right to family life. To do so she was invited to balance the right for him to be a father against the right for him to choose whether he wanted to be a father.

She rejected the argument of the Official Solicitor that Article 8 should be a starting point and as I believe most Court of Protection practitioners would have done, referred to the judgement of Lord Justice Davies in K v LBX [2012] EWCA Civ 79 that the general approach under the MCA is laid down in section 4 (to determine best interests) and ‘to add further legal starting point to the act is not called for.’

The Judge also gave a very helpful review of reported case law in determining best interests, which I shall repeat her for ease of reference to those who may want to refer to it in future (it can be found at paragraph 84 of the judgment):

The courts have considered how s4 is to be applied in a number of reported cases. There is consensus that as matters stand the following should be borne in mind:

i) The decision must be made in DE’s best interests not, in the interests of others although the interests of others may indirectly be a factor insofar as they relate to DE’s best interests. Re Y (mental incapacity:bone marrow transplant [2007] 2 FCR 172 and Re A (Male Sterilisation) [2000] 1 FLR 549.

ii) The court is not tied to any clinical assessment of what is in DE’s best interests and should reach its own conclusion on the evidence before it Trust A and Trust B v H (An Adult Patient) [2006] EWHC 1230.

iii) Best Interests is an objective test Burke v GMC [2005] EWCA 1003.

iv) The weight to be attached to the various factors will, inevitably, differ depending upon the individual circumstances of the particular case. A feature or factor which in one case may carry great, possibly even preponderant, weight may in another, superficially similar case, carry much less, or even very little, weight. Re M.ITW and Z and Others.

v) There is no hierarchy in the list of factors in s4 and the weight to be attached to the various factors will depend upon the individual circumstances: Re M.ITW and Z and Others [2009] EWHC 252 Fam [32].

vi) There may, in the particular case, be one or more features or factors which, as Thorpe LJ has frequently put it, are of “magnetic importance” in influencing or even determining the outcome Re M.ITW and Z and Others [2009] EWHC 252 Fam.

vii) Any benefit of treatment has to be balanced and considered in the light of any additional suffering or detriment the treatment option would entail Re A (Male Sterilisation) [2000] 1 FLR 549 at 560.

viii) The declaration should not be sought if vasectomy would be disproportionate and not the least restrictive step, risk management is better than invasive treatment A Local Authority v K & Otrs [2013] EWHC 242 [33].

ix) The decision is for the Judge not the expert. Their roles are distinct and it is for the Judge to make the final decision A Local Authority v K.D and L [2005] 1 FLR 851 [39] &[44].

In applying the various considerations the Judge agreed with the Local Authority responsible for supporting DE and heavily involved in doing so, concluded that ‘the evidence unequivocally points to an improvement in the quality of DE’s life in the event that he has a vasectomy.’

Mrs Justice Eleanor King was careful to perform a balancing exercise in coming to her conclusion and was unambiguous in setting out the factors she felt relevant, highlighting that the only factor against a vasectomy was in connection with the surgical procedure itself, but balanced against all the factors in favour, it was hard to see how she could make any different decision.

She stated that it was not a decision that the court can make lightly; ‘conscious as it is that for the court to make an order permitting the lifelong removal of a person’s fertility for non­medical reasons requires strong justification.’

Conclusion

What strikes me is that whilst the judgment began for many raising issues of dis-empowerment and suggesting that having a learning disability was something that one suffers, the outcome is the opposite of that. The Court of Protection, guided by the Mental Capacity Act 2005 has, through careful analysis of the law, supported this young man’s independent lifestyle by enabling and empowering him. Simply, having ruled that he should have a vasectomy is the one solution that will ensure that he will go back to lead the independent lifestyle he once led and maintain those relationships that are of great importance to him.

The House of Lords Select Committee investigating the success or otherwise of the Mental Capacity Act 2005 has recently heard evidence that improvement and education is required to ensure that the vulnerable are better protected by the law. I agree and am involved in cases where I am seriously concerned that supported decision making is worryingly absent, but this is one case that in my mind shows that on correct analysis of the existing legislation and case law, decisions can be made to support that of the individual. Capacity or not.