(6 years ago)
Lords ChamberMy Lords, I also welcome these amendments; removing “unsound mind” is a major step forward. I have a couple of questions for the Minister and I hope he can clarify. I may have misheard him but I understood him to talk about head injury. It would be helpful if he could clarify that he was referring to acute head injury—or acute brain impairment of any sort—as opposed to long-term damage such as frontal-lobe damage, which can happen when you have had a major brain injury. This can result in very long-term problems and difficult behaviours, which may mean that people currently need to be assessed as subject to deprivation of liberty. Could he clarify that we are not discounting a whole group of people who, it is generally felt, benefit from being properly assessed and safeguarded?
I would also like confirmation from him on another group. In January 2015, the then Mental Capacity Act deprivation of liberty safeguards policy lead in the Department of Health wrote out quite widely. There had been a concern about people who were nearing the end of life, including palliative care patients and patients in hospices. It was made clear in this letter that if somebody had consented to a care package and then went on—as part of their disease process when they were dying—to need some restrictions, and possibly to be moved to another place of care, that would not fulfil the acid test as such; neither would it in the case of people who were being nursed in a side room who were not under continuous supervision and control. The reason was that, in palliative care cases, there is often a time when the family cannot cope as the patient becomes unconscious, is moved to a hospice or develops another condition that had not been anticipated. It would be an inadvertent consequence if this letter from January 2015 no longer stood. It has been important and has made care easier. It was following this letter that we were able to change the regulations for what had to be referred to a coroner. That made a major difference, because families found it terribly traumatic to find a relative subject to a deprivation of liberty safeguard having to be referred to a coroner. I simply seek clarification on those two issues, but I in no way question the importance of removing “unsound mind” from the Bill. I hope this is the beginning of us seeing the end of that term, which is stigmatising.
My Lords, I welcome the replacement of “unsound mind”, but I ask the Minister to consider adding a safeguard to ensure that no one has their liberty denied because of a mental disorder without first being seen by a qualified doctor. It is essential that individuals are assessed for a mental disorder and not another condition presenting as a mental disorder, such as delirium or the side-effects of medication, which are common among older people. It is important that consideration is given to whether the disorder can be managed without depriving the person of their liberty. This requires assessment not only of their mental state but of their past and current physical health and medication. The assessment is a core part of this process. It has great significance because it relates to the deprivation of a person’s liberty. Who can carry this out should be stipulated in the Bill rather than in a code of practice. I ask the Minister to reconsider bringing forward an amendment to add this requirement to the Bill.
(6 years, 1 month ago)
Lords ChamberMy Lords, I feel that I should apologise for leading on this group of amendments, but it was by chance that my number came up. It was not my choice: I did not ask to lead on it.
The role of Amendment 65, which is the one that I really want to speak to, is to state clearly that we must strengthen the voice of anyone who has any concerns so that they can speak up on behalf of the cared-for person. I note that my noble friend Lady Hollins’s Amendment 66 provides powers to the voice of the responsible body and would mean that the responsible body must listen to representations. Amendment 67 strengthens the word “must”. There is a great deal in these amendments. I will not take the time of the Committee by speaking to other noble Lords’ amendments, other than to say that this group of amendments contains a great deal of rich wisdom. I beg to move.
My Lords, this group of amendments concerns the appointment of an advocate, or appropriate person, to support the cared-for person in exercising their rights. The appointment of an independent mental capacity advocate and the identification of an appropriate person rely on care home managers being able to arrange a capacity assessment and a best-interests decision and on them notifying the responsible body. I noted the Minister’s assurance on our last day in Committee that care home managers will not be making an assessment themselves. But how will errors be identified and what will happen if the care home manager gets it wrong? Will the Minister tell the Committee how that will be detected on the basis of a paper-based review by the local authority when the paper has been supplied by the care home manager? The responsible body should not rely simply on what the care home manager thinks.
My Amendment 66 gives the local authority discretion to appoint an appropriate person or IMCA without notification from a care home, with whom there may be a conflict of interest, if the responsible body has reason to believe that such representation and support is needed for the cared-for person. Reasons to believe might include notification by an AMCP or a third party, or local authority social services involved in care planning.
The provision of advocacy can have a transformative effect and be the first time that the cared-for person’s views, and those of their family, are forcefully represented to decision makers. A failure to listen to people or to give weight or credence to what they say lies at the heart of many of the tragedies that have shamed social care and health services over recent decades. For that reason, it is vital for people to get the support that they need to express their views and exercise their rights, either through the appointment of an appropriate individual, often a family member, or an independent mental capacity advocate.
As they stand, Clauses 36 and 37 of the Bill are confusing and poorly drafted, with inconsistencies. For example, the Bill states:
“An IMCA should be appointed if the cared-for person … has capacity to consent to being represented and supported by an IMCA, and … makes a request to the relevant person”—
but IMCAs are instructed to support and represent only people who lack capacity. My Amendments 67, 69, 70, 73, and 74 add emphasis and aim to address these inconsistences and ensure that every cared-for person has access to support from either an appropriate person or an IMCA who is both willing and able to help them understand and exercise rights of challenge.
As it is drafted, the Bill leaves open the possibility of circumstances where a person may have neither an IMCA nor an appropriate person and therefore no means of being able to exercise their rights under Article 5(4) of the European Charter of Human Rights. Rulings such as the AJ v A Local Authority judgment, in paragraph 35, stipulate:
“Article 5(4) may not be complied with where access to a court is dependent on the exercise of discretion by a third party, rather than an automatic entitlement … Where a person lacks the capacity to instruct lawyers directly, the safeguards required may include empowering or even requiring some other person to act on that person’s behalf”.
My amendments therefore remove best interests from the criteria for appointment of a representative, as this should play no role in determining whether people are able to exercise their rights of challenge. Will the Minister explain the basis on which he believes that Part 5 of the Bill as drafted is fully compliant with this ruling and with ECHR Article 5?
I am also concerned about the potential conflict of interest if those responsible for arranging and providing care, such as care home managers, also act as gatekeepers to the person’s ability to exercise their right of appeal through best-interest assessments. There should be a clear route for the cared-for person to be able to appeal and to get the support that they need to do this. We know that access to justice is already a serious problem under the current system. The appeal rate is below 1% and cases such as that of Steven Neary and others show how hard it is for families and detained people to challenge public bodies where they object to the arrangements. I understand that the Government estimate that the new arrangements will reduce the appeal rate even further to 0.5%.
My Amendments 76 and 77 recognise the considerable responsibilities being placed on an appropriate person. In some circumstances, an appropriate person such as a family member who knows the person may well be best placed to assist the cared-for person, but may need some assistance. Making sure that an IMCA is involved in these cases would enable them to fulfil this role with support.
Nothing in the Bill details the functions that the IMCA will perform. It would help the Committee if we understood why this has not been addressed. The Law Commission’s draft Bill provided powers to strengthen regulation provision—Section 36 of the Mental Capacity Act—around how an IMCA is to discharge the functions of representing or supporting, including challenging decisions and facilitating a person’s involvement in relevant decisions. The experience of DoLS over the last nine years has shown us the need for clarity on when the representative—an IMCA or lay person—can or needs to challenge the authorisation.
My Amendment 79 recognises this and reinserts regulation-making powers into the Bill, extending it in the case of an IMCA appointed under the LPS to make provision as to how that advocate is to support the cared-for person, and where relevant the appropriate person, in exercising the right both to make an application to court and to request a review. This provision is necessary to secure a person’s rights under Article 5(4).
The Bill recognises that the role that the appropriate person undertakes provides a vital safeguard for the cared-for person for the purposes of Article 5 of the ECHR, but the Bill fails to place a duty on the responsible body to keep under review whether the appropriate person is undertaking their functions. This is an important safeguard under the DoLS, where the relevant person’s representative role—essentially an identical role to the appropriate person—has a duty to maintain contact with the cared-for person. My Amendment 80 places a duty on the responsible body to keep under review whether the appropriate person is undertaking their functions and, if they can no longer fulfil them, to appoint another appropriate person or IMCA at that point.
The Minister has given reassurances, a number of times, that issues within the Bill will be addressed through the code of practice. The requirement to act needs to be in the Bill. How it is done and implemented could be set out in the code of practice. I hope that the Minister will accept that these amendments address serious and fundamental issues that need to be resolved within the Bill.
(6 years, 1 month ago)
Lords ChamberMy Lords, I added my name to Amendment 17 because I think it is important that things be written down clearly, particularly for the cared-for person—which is the term we are using—if they have fluctuating capacity or need to absorb things very slowly but want to understand. Also, their families and those concerned about them will not necessarily be there when someone comes in to assess them or formulate a care plan, but they will certainly have concerns and they may have a very good idea about wishes and feelings that could have been overlooked—not maliciously, but because people did not know about them. A written record will provide evidence for everybody about what is happening.
The way the consultation is conducted should therefore, I agree, demonstrate that restrictions have been proportionate and necessary, and that alternatives have been considered—and the reason they have been discounted should be given. I would like us to give people much more access to all their clinical records; the caring family, in particular, should have access to the records. Often, information held by family members and others close to the person is effectively like gold dust when it comes to planning their care, and would benefit from being shared.
Where someone’s condition deteriorates, if this has all been written down clearly you have a baseline against which you can measure changes. If they improve, the baseline shows the reason that things were put in place as restrictions, which could then be lifted. Again, that gives a benchmark against which to measure, which would make care more personalised. I hope this concept will be well received. I am unsure as to whether it should go in the Bill or in the code—it is easy to put lots into the Bill—but the principle is important.
My Lords, I have some amendments in this group. I welcome the explanations given by the noble Baroness, Lady Barker, in her introductory comments. The Bill requires the responsible body to complete an authorisation record containing important information for the cared-for person. However, it does not require the responsible body to provide this information to so-called cared-for persons themselves. I rather like the term “cared-about person”; that is what families have in their minds, that they are caring about the person. While this is about official, statutory care, we still want that essence of caring about the person to be central to it.
The responsible body does not currently have to provide the information to the person themselves or to their family or an IMCA should they be involved in supporting that person. Amendments 51 and 52 seek to address this omission, by ensuring that the person themselves and any appropriate person or IMCA supporting and representing them are given copies of the authorisation record as soon as possible after authorisation is granted. Amendment 53 would require that the person is told of the options to appeal and notified of the outcome of reviews, variation or termination of an authorisation.
I support my noble friend Lady Finlay’s advice that information should be shared. I add that it should be shared in a timely, not reluctant, way. Perhaps the Minister can confirm that omission of the requirement to inform the person about options to appeal and about outcomes is just an oversight and that it can quite easily be added to the Bill.
(6 years, 1 month ago)
Lords ChamberMy Lords, I have Amendments 47 and 50 in this group. They are concerned with the point at which court proceedings are triggered. It is appropriate that there is an ability to appeal, but it is also important that courts are not inundated and that disputes are resolved outside court as much as possible. Going to court should be the last port of call, but it should be accessible and should occur only when other interventions such as mediation have failed.
Sadly, sometimes cases need to go to court, which is why I have worded an amendment to allow the AMCP to consider going to court as part of their role. However, the AMCP must also be able to verify information and meet independently with the primary source—that is, the cared-ford person. That might mean setting up a meeting well away from other people who have previously been involved so that they can form their own view on whether there are other avenues that might be pursued before resorting to the court.
I have added my name to Amendment 49 in the name of the noble Baroness, Lady Barker. My concern is that a failure to meet the person directly might lead to a desk-based review, which would not enable the necessary scrutiny of the appropriateness of the care arrangements.
My Lords, this group of amendments takes us to the heart of the duty to ascertain the wishes and feelings of the cared-for person. For that reason, I am most grateful to the noble Lord, Lord Hunt of Kings Heath, for adding his name to my amendment, which would rename this part of the Bill, changing a consultation to a duty, and move up this paragraph from lower down:
“The main purpose of the consultation required under this paragraph is to try to ascertain the cared-for person’s wishes or feelings”.
That must be paramount. If we do not make arrangements that fit with and respect the known wishes and feelings of a person—or we make arrangements that cut across the feelings of others and cannot justify them very carefully—we will have failed completely in what we are trying to do. We should be empowering people to live as they want to live as much as possible while accepting that we need some restrictions in place.
That is why this group of amendments would also move the cared-for person to the top of the list of people to be consulted and make it clear that the professional responsible for the care plan needs to undertake the consultation. That will then inform what is happening and how the care is to be organised on a day-to-day basis and in the longer term, as well as ascertain whether the restrictions that may be put in place are necessary and proportionate in the light of knowing the cared-for person’s wishes and feelings.
It is important to remember that people do not object only actively. They may signal objection by becoming more withdrawn or less active. They may start eating less or there may be changes in toileting and so on—all of which can signal that someone is unhappy. All these changes should be considered in thinking about whether somebody is objecting in the broadest sense to whatever has been provided for them. They may well signal that their wishes and feelings are not being adequately respected. I beg to move.
My Lords, I welcome the amendment tabled by the noble Baroness, Lady Finlay, which seeks to ensure the wishes and feelings of the person are at the heart of decision-making. My Amendment 33 follows this principle by adding the cared-for person to the list of people with whom the assessor is required to engage before arrangements can be authorised.
Self-advocacy groups and charities supporting people with learning disabilities and their families have shared their concerns that the Bill does not require sufficient regard to be paid to their views in particular. I will quote some views expressed by Learning Disability England, a membership organisation:
“Disabled people and their families are especially worried that there is no requirement to consider the person’s own wishes. That is how the institutions were … We do not want to go back to the days of the institutions … There is a risk that we take away people’s independence and give power to people that may not be doing a good job”.
Consulting with people who lack capacity can be challenging and requires quite advanced communication skills. It is crucial that we get this right as the consequences are significant and lead to other improvements or deteriorations in people’s health and independence. I declare an interest here as chair of the Books Beyond Words community interest company, which develops resources and pictures to help doctors, nurses, care staff and others to communicate more effectively with people with learning disabilities and others who find pictures easier than words and to support decisions which, at their outset, appear too difficult or challenging.
Amendment 35 is designed to oblige those carrying out the assessment to explore less restrictive alternatives thoroughly. This would need to take into account the cared-for person’s family and others who know them well and have an interest in their welfare, who are likely to have important information and expertise to share about the person’s needs and what good support, which maximises their freedom, might look like.