Winterbourne View, scrutiny and recommendations for reform: Third evidence session of the Committee on the Mental Capacity Act

The House of Lords Select Committee on the Mental Capacity Act 2005 (MCA) has posted a transcript of its third evidence session.  The Committee hear evidence from Toby Williamson, of the Mental Health Foundation, who was chair of the Making Decisions Alliance from 2004, an alliance of national and regional charities ‘that worked with different groups of people with disabilities’ and campaigned for the MCA to be passed in parliament.  Williamson also spoke from the perspective as a co-author on a major study of best interests decisions (the ‘BIDS’ study), conducted by the Mental Health Foundation, the Norah Fry Research Centre at Bristol University and the University of Bradford.  They also hear evidence from Sue Brown, who is head of public policy for the charity Sense, which works with deaf-blind people, and who was a former member of the Making Decisions Alliance.  After hearing evidence about the passage of the bill, and the satisfaction (or otherwise) of those who were involved in campaigning for it with its implementation, the Committee heard evidence from the authors of two major reports on serious welfare and abuse issues.  Margaret Flynn gave evidence on the MCA from her perspective as author of the Serious Case Review into the abuse of adults with learning disabilities at Winterbourne View hospital, and Pauline Heslop from the Norah Fry Research Centre at the University of Bristol spoke from her perspective as an author of the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD) report.

Below are some selected passages from the evidence session.*  The discussion ranged over the passage of the Bill through parliament and the cosmetic changes to the ‘general authority’ (now known as the ‘general defence’, s5-6 MCA), implementation and understanding on the ground, restraint, deprivation of liberty, the presumption of capacity, the importance of advocacy, life sustaining treatment decisions (and premature deaths), the Court of Protection and Winterbourne View.  The UN Convention on the Rights of Persons with Disabilities (CRPD) didn’t get an outing today, which is a shame really as I would be interested to know what these witnesses make of its implications for the MCA and the DoLS.  

On the principles of the Mental Capacity Act 2005

Q45: Toby Williamson: Although the Making Decisions Alliance ceased to exist after the Bill was passed and the Act came into effect, our view as an organisation—and that of many organisations I still have contact with who were members of the MDA—is that it remains a very positive and progressive piece of legislation that has benefited large numbers of people who may lack capacity through both empowering them to make decisions themselves and protecting them if decisions need to be made on their behalf, and that it provides greater legal clarity for carers and practitioners working with them.

Q45: Sue Brown (Sense): ... I echo what Toby has said about the way in which the alliance worked and the fact that Sense certainly feels that the legislation itself is a really good framework for supporting our staff when they are working with people in those different situations. The problem is when they are working with professionals who maybe have less awareness and understanding of the Act than perhaps they should.'

The general authority

Q50. Toby Williamson: ...Obviously the general authority was changed and is now known as the acts in connection with care and treatment. That was a helpful change, because it emphasised the focus on decision-specific and time-specific capacity assessments and decision-making rather than the general authority, which applied a general power to act on behalf of people who lack capacity. Again, the research we carried out showed that in around 25% of cases involving a best-interests decision, the capacity assessment that lead to the best-interests decision was based on looking at the person’s disability, diagnosis, age, appearance, condition or an unwise decision, which rather leads us to believe that, certainly in a number of those cases, people were still making assumptions about a lack of capacity for reasons which the Act does not allow, i.e. a blanket assumption based upon diagnosis or an unwise decision. That gives some cause for concern that safeguards are still not properly understood and that the process is not properly understood in terms of applying the principles to the acts in connection with care and treatment.'

The implementation and understanding of the Mental Capacity Act 2005 on the ground

Q47: Toby WIlliamson: the evidence that we gathered from research anecdotally indicated that staff can follow that process quite well. In over or around 50% of the best-interests decisions that were made, it was reported that the person who lacked capacity was involved in some shape or form in helping to direct that decision, even if they could not make the decision themselves. So staff understand process better than they understand the principles or application of the principles.'

Q71. Dr Pauline Heslop: we found that there was particularly good knowledge about the Mental Capacity Act in specialist learning disability nurses, both in the hospitals and in the communities, and that their involvement had been instrumental in ensuring that proper procedures were followed for patients at times where they were involved. We found some knowledge about the Mental Capacity Act amongst care home managers, but the finer details of that were sometimes missing, and particularly missing among front-line junior care staff. We did identify some tensions between family carers not understanding the Mental Capacity Act and practitioners who were involved in decision-making about family members. That is certainly an area where we need to improve knowledge. However, we found generally poor knowledge, I am afraid to say, amongst non-learning-disability-specific hospital staff, primarily, at primary and secondary level—so amongst GPs and medical and nursing staff.

On advocacy

Q52: Toby Williamson:  I would say just that not only does it provides an essential service to people who lack capacity, but anecdotally, from conversations I have had with IMCAs, it can be said that it provides an essential service to service-providers and professionals, who may be unfamiliar with the Act, who can see the benefit of having an IMCA come in who can spend time with a person who lacks capacity to find out more about what their wishes, feelings, beliefs and values are.

Q61. Dr Margaret Flynn: I am convinced that people desperately need independent assistance outside the hospitals. The hospital mediated access to advocacy; you had to go through one of the nurses, and if patients were troubled and distressed they were unlikely to go to nurses who had been known to stand back and observe some of the most egregious abuses that were captured on the TV. I have to suspect that that happens elsewhere, because the work of the CQC has not given us any confidence that these places are safe, or indeed that people’s physical healthcare is given the priority that it very much requires.

Q63. Dr Pauline Heslop: best-interests decisions for people who are unsupported have been made to put them on an end-of-life care pathway when, in fact, if they had had supportive advocacy, a different decision might have been made.'

Q71. Pauline Heslop:  Generally, we found the involvement of IMCAs to be very positive for the individuals concerned. They provided very useful protection for individuals, but where we did find difficulty was: in the definition of serious medical treatment and the triggering of an IMCA involvement regarding that; people being aware that an IMCA needed to be appointed—there was some confusion about that—and decision-makers relying on the views of sometimes very distant family members who maybe had not been in contact with the individual for some years, when actually the appointment of an IMCA might have been more appropriate and provided better protection for the individual in that circumstance.

On deference to authority, particularly clinicians

Q64. Margaret Flynn: throughout the Winterbourne View hospital debacle, there was a clear theme of deference to clinicians and the assumption that nurses were working as clinicians. When Avon and Somerset Police rang the hospital, they believed that they were dealing with clinicians... When people were tobe discharged, clinicians were sometimes instrumental in saying, for example, “I think it would be worth while retaining this person here for at least six months to work on his anxiety”—that is a real case from Winterbourne View hospital. The challenge that is endemic in best-interests assessment maybe was not there—it was completely absent from this institution—and the clinicians were able to take some decisions that, in retrospect, we know to be massively unhelpful.

Q72. Margaret Flynn: no clinician is going to say that they act in anything other than the best interests of their patients, and it does seem to me that clinicians at this hospital were not subject to the challenge. Rather, they received the deference of people who could and should have been challenging.

Scrutiny of decisions made under the Mental Capacity Act 2005 and the role of the CQC

Q71. Pauline Heslop: 'My own view is that there is not anyone on the ground scrutinising adherence to the Mental Capacity Act. There is not that knowledge base; there is not the confidence to challenge senior consultants maybe, for example, if the processes are not being followed—apart from our experiences with learning disability liaison nurses, I must say. So we do need to strengthen that protection there. '

Q69. Margaret Flynn: It really would not have taken very much for someone to spend a little bit of time focusing on one or two patients and trying to understand something of their circumstances. We know that there is a problem when we ask people, “How are you?”—particularly when strangers ask somebody, “How are you?”—and we are very likely to say we are fine, even though we might be extremely scared because the person who might be sitting alongside me is responsible for causing pain or whatever. The Care Quality Commission and other regulators have to think very differently about working with people who are in conditions of detention, which is why we suggested that there should be something akin to Her Majesty’s Inspectorate of Prisons—something much more ruthless than a fairly gentle, “This is when we’re coming. Put the kettle on.”

Q70. Margaret Flynn: I believe that the Care Quality Commission are currently piloting work on interviews with patients with learning disabilities. I have been party to a meeting about the interview schedule, and I have to say I did have some concerns about asking 100 yes/no questions of adults with learning disabilities. We do know that there is a tendency to acquiesce when people are uncertain and maybe have limited educational experience. I have expressed my concern. I do understand that the schedule is being deployed with very mixed, if not terribly happy, results.

On the presumption of capacity

Q46: Toby Williamson:  The findings from the research indicated that the process was quite effectively followed around assessing capacity and making best-interests decisions around big decisions such as consents on medical treatment or changes in accommodation, but there was very little report made on those everyday decisions that you describe. There was perhaps a sense that a similar practice that occurred before the Bill was passed is continuing, in that there may well still be assumptions of incapacity based upon diagnosis or a disability.

Q48. Sue Brown: We also find that the less formal communication you have, the more likely you are to be assumed to lack capacity, without a proper capacity assessment having taken place.

Q63. Dr Pauline Heslop: The assumption of capacity is a good starting point, but in our experience it has not always been questioned when it should be questioned. A particular example of that concerns people who are particularly fearful of contact with medical professionals or medical interventions. We found that a substantial minority of people whose deaths we reviewed had had an overriding fear of medical interventions. I would argue that that fear meant that the person did not really have the capacity sometimes to weigh up what was in their best interests, but that often was not questioned and the assumption of capacity was made irrespective of that overriding fear.

On withdrawal of life sustaining treatment

Q63. Dr Pauline Heslop: unless the best-interests process is being followed properly, it would appear that the judgment of one person could determine the life-threatening or life-saving trajectory that has been followed. That judgment has sometimes been made, we know, based on prejudice, a lack of information or a lack of a holistic assessment of the individual.

On restraint

Q53. Sue Brown: ...A decision is made that something is required, and in this case it might be restraint for the person’s safety. Does that then get reviewed, or does it just become a routine part of the person’s care that is not questioned? ...We find in a lot of services that that sort of review process does not happen. Someone may be restrained in a particular way in a particular circumstance for years and years without anybody going back and saying, “Does the situation still apply?”

Q66. Dr Margaret Flynn: We know that some patients were physically injured as a result of being subject to restraint at Winterbourne View hospital. Some fractured bones, and they received treatment in local A&E services. We do know that one consultant was extremely concerned that the description of an injury was not consistent with the nature of the injury, but that concern was not fed onwards. It would have been disclosed in any event to the accompanying member of staff, who was not going to go to either the CQC or the local safeguarding personnel.

On communication

Q52. Sue Brown: ...we have a particular issue around the ability to find an IMCA with the relevant communication skills. We have had IMCAs arriving to work with someone, who have no sign language and no interpreter, and therefore again, our staff have to remain involved to facilitate communication, which does not allow the person to communicate anything they might want to say about our service, for instance—because we are still in the room... I think that those who are commissioning IMCA services need to make sure that communication is part of the commissioning process, so that every IMCA service can provide someone who understands people with a range of different communication needs.'

Q54. Sue Brown: We have some concerns about the court’s ability to engage with people who have little or no formal language and instances where, as far as we are concerned, someone is communicating very clearly a decision and the court does not recognise that because they are not using formal language. There are some real issues about the court’s understanding of the inter-relationship between communication and capacity.

Q65. Margaret Flynn: We know that behaviour is extraordinarily eloquent, but the eloquence of that behaviour was never seen for what it was—patients wanted to get out. They were simply returned to the hospital, but the hospital did not inform the regulators and did not inform the commissioners of the service.

On abuse at Winterbourne View

Q61. Dr Margaret Flynn: It is very clear that patients at Winterbourne View hospital were scandalously silenced... the police found written complaints in an office drawer that had been drafted by patients that had not been addressed, and neither were the concerns of families addressed. The very typical response to the concerns of families from staff at the hospital was, “Well, your daughter”—or son—“would say that because she doesn’t want to be here. That is what happens—that is why they are here”. So they had no voice. On the issue of advocacy—more generic advocacy—some people did not appear to have access to anybody.

Dr Margaret Flynn: I gather from conversations with relatives who have experience of assessment and treatment services elsewhere in the country that there are enormous concerns about the safety of their relatives when they are detained.

Q57. Margaret Flynn: There are, as you know, multiple layers of safeguards built into the Mental Health Act. However, nearest relatives, IMCAs, hospital managers, second opinion doctors—really, none of those had any impact on the day-to-day circumstances of all patients at this hospital.

Q57. Margaret Flynn: We can confirm that these four people were objectively confined and that visiting to all patients at this hospital was very conspicuously restricted and became more so over time. The distress arising from the care regime within the hospital and that which was imposed, including the administration of medication and the use of physical restraint, was not subject to any supervision. It does not appear from any of the documentation that we have seen that this was ever scrutinised or subject to review.

The Court of Protection

Q54. Toby Williamson: From what I recall, when we discussed with the department about the court as the Bill was going through Parliament, we were led to believe to a certain extent that the relatively informal nature of the Court of Protection which preceded the Act being passed would continue, and that things such as bedside hearings and informal communication with the court, which were seen to be a benefit, would still be available. Inevitably, as in many respects it acquired a different statutory status through the Act, it has become more formalised. From what we hear, people who may lack capacity, family members and people who are unused to the court system do not go to the court very frequently. They see it as something quite complex and sometimes intimidating, so there is a case to be considered for looking into whether disputes are occurring at a lower level and never actually reaching the court and  being resolved through other means, whether that is through complaints procedures or mediation systems, and whether that could be more formalised and made more accessible and available to potentially divert the need for going through lengthy court cases or not getting disputes resolved in a very satisfactory way within health and social care settings. I am aware that possibly extending the IMCA service might help in that respect, and that in other jurisdictions—in the States and Australia—the role of the public guardian is to intervene and mediate in disputes, which is obviously not the role of our public guardian. I think that there is probably a need for further research to look at what kind of disputes are occurring, how they are being resolved or not, and to draw some conclusions from that before thinking about whether the court and those legal processes around resolving disagreements need to be changed.'

The deprivation of liberty safeguards

Q49. Toby Williamson: 'The Making Decisions Alliance was coming to an end when the Bournewood case was announced and thoughts and plans were being made about how to address the so-called Bournewood gap. We recognise that a legislative solution had to be found to address that. We wanted a relatively simple legislative solution that met the requirements of the European court’s findings on the case, something that reflected the elegant simplicity of the Mental Capacity Act. What has happened is rather more complex, quite bureaucratic and difficult to understand, and it is much more procedurally driven... Of course, they were led by the Department of Health at the time when it was also dealing with the reform of the Mental Health Act. So they have a very strong flavour of the procedure of the Mental Health Act rather than the simplicity of the Mental Capacity Act... This is one bit of the Mental Capacity Act where from our point of view the jury is out in terms of whether this should be changed or allowed to bed-in further. However, it is certainly proving challenging for many people who are affected by it, whether staff, service-users or families.'

Recommendations for reform?

Q45: Toby Williamson: our view, and the view of other organisations that were members of the Making Decisions Alliance, is that the priority is to ensure that it is properly understood and that there is proper awareness across sectors for what is still a relatively young piece of legislation, rather than place any priority on reform of the legislation at this stage. It is still too early to do that. '

 Q51. Toby Williamson: my priority at the moment would still be to try to ensure that all those affected by the Act understand how it relates to other policies and processes that they have to work to rather than saying that the Act should be changed at this stage.

Q48: Toby Williamson: when we were campaigning in support of advocacy to be included within the Act, our view was that IMCAs should be made available to people who had family and friends where disputes arose, because many families would be very unfamiliar with complex health and social care systems, and therefore would be at a disadvantage if there were to be a dispute with a very knowledgeable social worker or doctor. Having advocacy to support them would therefore be very helpful.

Q55. Toby Williamson: We think that the code of practice is a very good document. It is very clearly written and very helpful, so we would not want to lose what is already there. Of course, however, it was drafted before the Act came into effect, so in a way it is a hypothetical set of descriptions and guidance, and now we are building up case law and evidence from research. Even if there was not the appetite for revising the code, perhaps consideration should be given, if possible, to issuing some kind of supplement to the code as an interim measure to gather together all the evidence that has been accumulated over the last six years since the Act came into force to provide that additional central point of reference and guidance that many practitioners would find useful.'

Q56. Pauline Heslop: We made three recommendations [about the MCA] ...The first was that advice needs to be available for professionals 24 hours a day. Within that we suggested a telephone line staffed by experts in the Mental Capacity Act, able to provide telephone advice in a similar way to the way the language line currently works. We also suggested that Mental Capacity Act advisers be employed locally at a senior level in all secondary care establishments and in clusters of GPs. Thirdly, we suggested that the national Commissioning Board and clinical commissioning groups must ensure that they have adequate oversight of the appropriate Mental Capacity Act safeguarding arrangements, and that together with regulators they must enforce the Act.
'The second recommendation was regarding the definition of serious medical treatment—we feel that that needs to be clarified. The third recommendation was that there does need to be mandatory training and mandatory updates about the Mental Capacity Act for any health and social care staff who are involved in delivering care. We reviewed some training programmes and found that there was considerable variation in what people were including in training packages. In that respect we have suggested an approved e-learning package which, supplemented with individual applied training in practice, makes it much more relevant to individuals in the capacity in which they are working.'

*The transcript I am working from carries this notice: 'Any public use of, or reference to, the contents should make clear that neither Members nor witnesses have had the opportunity to correct the record.'