‘Deprived of her liberty’: My experience of the court procedure for my mum

By Anna, 17^th March 2023

“She’s been deprived of her liberty since 27 February 2020.” When I read this sentence in an Open Justice Court of Protection Project blog recently (“When wishes and feelings change”) it felt as though a shard of glass was piercing my soul. 

“Deprived of her liberty” is a common legal term that I have heard many times over the past few months and to some extent I have become used to it. But occasionally, like this time, it hits me emotionally. Because it is a term used to refer to my mother’s situation. 

And whereas the law regards her as being deprived of her liberty, we, her family, believe that she is a vulnerable adult who is somewhere safe, protected and well cared for. 

Due to my mother’s “deprivation of liberty”, I have experienced what it means to be part of a Court of Protection process. Through this, I have learned a lot about the Court of Protection and it’s safe to say that my opinion about it has vastly changed from the beginning to where I am now, at the end of the process. 

I am sharing these thoughts in the hope that it might help other families in similar situations – and I’m writing also for the legal and social work professionals involved in what is, for them, probably routine work, to help them understand more about what it feels like for a family member. 

Starting at the beginning

In 2013, mum was demonstrating the first signs of memory loss. 

Her four children all agreed that to help protect her, we should set in motion the process of helping her to appoint a Lasting Power of Attorneys (LPA), for Property and Finance, and an LPA for Health and Welfare. Mum agreed to this and it was done officially through a solicitor, who agreed that mum had mental capacity to understand what she was doing. For practical reasons, my sister and her husband were appointed LPAs. We as a family were very relieved that this legal position had been set up, so that we could ensure mum and her affairs were going to be looked after. 

Mum’s memory continued to decline, and in 2016 she was formally medically diagnosed with “Dementia of Alzheimer type, atypical or mixed type” (I’ll call this Alzheimer’s from now on to keep it simple.)  

My sister spent more and more time over the years caring for both my mum and dad, despite working full time and having school age children. Having the LPAs in place proved to be a godsend, especially for managing mum’s finances and arranging care. Mum didn’t have a formal care package herself, but the carers who went in to see my dad “kept an eye” on mum too. 

Then in 2019 dad died, and social services became involved directly with mum’s care, with a package being set up.  This was despite mum’s resistance. She believed that she didn’t need care, or if she did that my sister should provide it. My other sister offered to go and live with her but she refused that too. She was convinced she was going to get better and her health situation was only temporary. She refused to acknowledge that her memory was getting worse. It’s easy to feel that she should have accepted her diagnosis and not fought it, but I feel that it was her way of coping. I can’t imagine what it felt like for her. 

Things continued to deteriorate, despite the care package in place. Mum was becoming unsafe in her own house, dropping lit cigarettes on the floor and developing very unhygienic habits. Then she started going out on her own, putting herself at risk.  She went with a (thankfully well meaning) stranger into the town centre, and then one evening she was picked up away from her home by an off-duty police officer, with her having no idea where she was or what time it was. 

As a family, and after discussing the situation with mum’s social worker, we agreed that the time had come for mum to go into care, for her own well-being and protection. We believed that mum did not have the mental capacity to decide for herself and that it was in her “best interests”. 

An appropriate care home was identified with the help of the social worker, which specialized in dementia care and was known to us. Luckily it had space for mum.

The social worker informed the Care Home manager that mum would be coming in, initially for a 6-week period of respite care. She also added that the manager would need to apply for an “Urgent DOLS authorization” (DoLS meaning Deprivation of Liberty Safeguards). Of course, I now recognize those words but at the time we had no real idea of what that meant. Looking back at the exchange of emails with the social worker before mum went in, when my sister asked if the placement would be permanent, the social worker did clearly spell out that the placement was initially for the 6-week period and that she would complete a review at the end of that period. However, we weren’t overly worried as we could not see how there was any way that mum would return home, given the advancing nature of her dementia, and therefore her staying in full time care would be a formality. How naïve we were. 

We knew that mum would not agree to go in by herself: in fact that she believed she didn’t need any care at all, let alone care in a home. So, we came up with a plan. My brother would take her, telling her she was going there to buy cigarettes. True, it was deception but for us it was the means to a good end. We thought it was a kind way to carry out something we truly believed was in mum’s best interests. We were nervous when the day arrived, but she willingly went in. Later that day, the home sent a video to my sister, showing her singing along to some old melodies. She seemed happy. We were happy that she was safe. We all breathed a collective sigh of relief. 

But what we thought was the end of a process was really the beginning of another. A legal process that we had no knowledge and understanding of. 

It was August 2021: mum was 87 years old and, according to the law, she had just been deprived of her liberty. 

The limits of Lasting Power of Attorney

When my sister became mum’s LPA for health and welfare, we assumed that this was precisely to cover this situation: due to her Alzheimer’s, mum had lost the capacity to make decisions about her health and welfare and therefore my sister could make those decisions on her behalf. 

This is what the official LPA mum registered says on the front page: 

“This lasting power of attorney allows you to choose people to act on your behalf (as an attorney) and make decisions about your health and personal welfare^[1], when you are unable to make decisions for yourself. This can include decisions about your healthcare and medical treatment, decisions about where you live and day-to-day decisions about your personal welfare, such as your diet, dress or daily routine.” ^[2]

We assumed that the Alzheimer’s diagnosis in itself was enough proof that mum was losing capacity to make decisions for herself, particularly (using the term I am now familiar with) “in her best interests”^[3]. Her deteriorating condition that had led to the urgent entry to the care home seemed enough evidence to us that she had in fact lost capacity to make important decisions and therefore, the power to make those decisions had passed to my sister. 

What we didn’t know or understand ,was that in fact capacity can be deemed to “fluctuate”, even with a progressive condition like Alzheimer’s, and therefore the “Urgent DOLS authorization” under which mum had been admitted had only been made until a permanent order could be issued, establishing that mum’s loss of capacity was permanent and that her deprivation of liberty was fully authorized. We also didn’t realise that even once she had been deemed to have lost capacity, that the power to make decisions did not then belong to the person acting as Health and Welfare Attorney (my sister), but that a specific legal framework was relevant, relating to DoLS and ultimately, in some cases, a role for the Court of Protection with a judge making decisions based on evidence. 

Mum started to have Deprivation of Liberty assessments (DoLS) by independent Best Interest Assessors, as part of the legal process for making her admission authorised, as opposed to an “urgent” authorisation^[4]. We knew about these because the social worker would update my sister, as the LPA. But as mum was objecting to being in the care home each assessment was another renewal/ extension of the urgent authorization. 

Each time mum was asked if she was happy in the home she said “no” and used words like “I’m a prisoner here”. When this was fed back to us, we weren’t surprised, as we knew that mum had never wanted to go into a home where she couldn’t smoke when she wanted to and because she felt that she could look after herself and was going to get better. We weren’t particularly worried about her saying this because we assumed that my sister would have the final say anyway. And the care home staff reassured us that unless she was specifically asked by someone official, she never mentioned feeling like a prisoner. I think that mum also had a Paid Relevant Person’s Representative (PRPR) appointed at this time too, although we didn’t know about this at first. It has only become apparent to me that this happened as part of going through the process, although there was still a lack of clarity around what their role was and why they had been appointed. I now understand (through attending a training course for families with Edge Training) that in some cases the LPA is also a person’s representative. To this day, it is still not clear to me precisely why my sister as LPA was not appointed as mum’s representative. Was it to do with the fact that my mum blamed my sister for “putting” her in the home? And that, as became apparent later, the lawyers mistakenly thought my sister was an only child and was abusing her power?

In the meantime, as a family we agreed that we should sell the family home. This was because there was an equity release contract on the house and under the terms of that arrangement the house had to be sold and the equity returned within one year of the last person living there leaving, either because of death or on going into permanent care. In any case, we needed the remaining proceeds from the sale of the house to pay for the care home fees – mum is what is known as a “self-funder”, paying for her own care home fees. And to us, there was no way imaginable that mum would be returning to live in the house. It was sold in November 2021 and the proceeds received in February 2022. We agreed not to tell mum as we didn’t think she would be fully able to take it on board and mostly because we didn’t want to distress her. Afterwards, we were told that somebody could query whether there was a mental capacity assessment about the house sale, but we had no idea about this, and again, assumed that the LPA authority my sister had covered this situation. 

Court Proceedings

Early in 2022, the social worker started to talk about the possibility of “court proceedings”. This started to concern us, although not unduly, as we didn’t think it would come to that, due to my sister having LPA.

And if I mentioned “court proceedings” to friends, they would say “Oh, it won’t come to that”.  Again, how naïve we were!

On 31^st March 2022 I had the following WhatsApp message from my sister: “Had a call from [Social Worker] yesterday to confirm it is going to court and my input is required. I asked that you be consulted too”.

A court hearing had been set for June 2022. 

We were truly shocked, distressed and – to be honest – angry. We had no idea what this meant. We could not believe that it had got that far. What court? Why? What was the purpose? Would it mean mum being discharged from the care home? How would we be consulted? Were we as a family being judged – did they think we didn’t care for mum or were after the money from the house sale?  My immediate reaction was that it was a way of lawyers making money, and the only thing I could think of was to write to mum’s MP. Surely the whole point of the LPA was that my sister had the power to make decisions in mum’s best interests once she no longer had capacity. Which in our eyes was the case now, due to her Alzheimer’s and her resulting behaviour which was putting her at risk.

In early April, after I had contacted the social worker to ask her more about the court process, and what it was exactly, we had a brief 15-minute meeting using Microsoft Teams. I sensed a change in her attitude towards us. Whereas before we had communicated very effectively and openly, this time she seemed more cagey, as if she shouldn’t really be talking to us. I know that it was the first time she’d had a case going to “court” so maybe she was nervous about this. She told us that the court was the Court of Protection and the case was a Section 21A appeal. I subsequently learned that s21A of the Mental Capacity Act 2005 relates to appeals against standard or urgent authorisations (of deprivation of liberty of a person in a placement like a care home which is registered by the Care Quality Commission). 

The legal wheels began to turn.  A Litigation Friend was appointed to represent mum and she was going to become known as “P” (Protected Party) and she was apparently bringing a case against the Local Authority who had organized the standard authorization depriving her of her liberty. There was mention of the need to consider “less restrictive” living conditions. 

We were told that my sister, even though she had authority as the LPA, had no formal role in the proceedings and neither did the rest of us siblings. We were advised that if we wanted to become formally involved, we should find our own legal representatives, at our own cost. Mum’s costs would be covered by legal aid. 

It had all suddenly become very real and concerning. We had used deception to admit mum to the Home. We had sold the house. Mum said that she was a prisoner. I realized how it could look to other people. And we would have no formal role in the proceedings. We knew that if mum was moved it would be us picking up the pieces and dealing with the consequences. But most of all, with our lifelong in-depth knowledge of her, we believed she was in the right place for her well-being and safety: she had got to know the staff, she didn’t try and leave and we thought it would be cruel and distressing for her to move. 

I started by trying to contact the solicitors whose details had been provided to my sister. But they refused / couldn’t talk to me. First, because they weren’t aware that my sister had any siblings (the first of several errors of fact, which could have been avoided if we had been consulted earlier); and secondly, because I was not officially linked to the case and they were not allowed to talk to me. I fully admit that in my early email communications with them they could probably sense an underlying tone of anger and frustration (although I tried to keep my tone polite).  They probably felt threatened or that I was trouble. For my part, in my head they were “the enemy”, interfering in our family affairs. How could they know what was best for mum when they didn’t know her or her life story? 

I started searching the internet to try and find out more about the COP and s21A appeals. I was determined to do what I could to help my sister and mum and ensure that the family’s voice was heard. 

And then, by chance, I found the Open Justice Court of Protection Project website. I sent an email, explaining our situation and pleading for help. Celia Kitzinger (joint founder of the Project) replied to my email and I am so thankful that she did. 

Over the course of a few months, Celia completely changed my understanding of the COP, of the legal process, of the role of the lawyers, and the law behind s.21A. Although I still have questions about the process and thoughts on how it can be improved for families, I no longer see the legal representatives involved in the COP as “the enemy” and in fact I admire them for the work that they do in often difficult circumstances and for not very much money. I think they are unsung heroes (as well as social workers). 

Celia explained to me that, unlike a criminal court, the COP was was not an adversarial court but an inquisitorial one, with parties providing evidence that would enable the court to make the best decision for the individual. It is (usually) a largely collaborative process, with parties working together to find the best solution for P. She said that the case going to court did not automatically mean that mum was going to be moved: “less restrictive” meant making sure that her desires and wishes were being catered for as much as possible. For example, ensuring access to the community where possible, or ensuring that somebody’s religious and cultural needs were being catered for. And she explained about the concept of “fluctuating capacity”, that somebody deemed not to have capacity at a certain moment in time could be deemed to have capacity later, as it is time specific; and that people can have capacity to make some decisions (like what clothes to wear) and not others (like whether or not to consent to a medical treatment).

She suggested that I might like to observe some hearings before my mother’s hearing in court – to develop my understanding of how a hearing worked – and she was willing to come along with me to (virtual) court.  I will always remember that first hearing, as I was so nervous. But I learned a lot from it, especially about the tone of the meeting and how judges are. Each of the few hearings I have observed has been conducted in a positive spirit, even as difficult circumstances are discussed. Lay people involved have always been treated with respect and concern for their understanding. And the judge has always done their best to make observers welcome. 

I wanted my voice to be heard in the Court of Protection when the judge was making decisions about my mother. I now knew I could attend hearings as her daughter, but I decided that I would have more ‘entitlement’ to participate if I were formally joined as a party^[5].  This meant I would be able, but also required, to participate in all court hearings. As I didn’t want to have to pay a solicitor and barrister, I would be a “litigant in person”, representing myself. I would be copied in on all communication between the two legal teams (my mother’s and the local authority’s) including having access to all orders. I would be granted permission to submit a Position Statement before each hearing, as well as having access to the other party’s Position Statements. And I would automatically have an allocated ‘speaking slot’ in court. I applied to be a formal party to the case and during the June ‘directions’ hearing, the judge agreed to this and I became Respondent 2. It did seem to cause some concern that it was me who wanted to be joined to the case and not my sister, as she was the LPA. But she really did not want to and my siblings were happy for me to undertake that responsibility. 

One aspect that has been the most difficult to deal with has been the Transparency Order (TO). Once I joined the case, I felt I had to agree to the TO, basically an injunction forbidding me to talk about the case in order to protect mum’s privacy. As it says on the front of the injunction, if I breach its conditions I could be held in contempt of court and sent to prison, fined, or have my assets seized. This is quite frightening and I have become slightly paranoid about what I can and cannot say and share. My sister was given express permission to attend court hearings and be given all documents too. We were also given permission to talk to our other two siblings about the case. It is sometimes hard to fathom that they were not automatically given access to information about a case involving their mother, especially as all four of us have always been in agreement about caring for her. Sometimes I wonder whether it wouldn’t be better to make access automatic to direct family members, and to expressly forbid sharing information where it is necessary. But of course, I’m no legal expert. And I accept that there will be cases where family members are sometimes the problem and not everybody’s relatives are loving and caring. It just feels to me, rightly or wrongly, that the presumed position is that the family are not loving and caring. 

I have since learned that I can apply to vary the TO (‘amend it’, in layman’s terms) to enable more visibility. This is something I may well consider at a later point, when I am not so worried about protecting my mother’s privacy. I am happy to share our story in the hope of helping other families, but mum has always been a very private person. This is one of the reasons why I am writing under a pseudonym. 

The hearing was conducted in June and there were two subsequent Round Table Meetings (RTMs) to discuss how things are going and to agree on ways forward. Mum did not attend any of these, as she would not have been able to understand what was going on and we believe it would have been distressing for her. 

A final agreed court order was approved after the second RTM, which meant the December hearing was ‘vacated’ (i.e. cancelled) and the case came to an end.  If for some reason future issues arise, this would mean a new case. 

There remains a standard authorization in place, depriving mum of her liberty and authorizing restrictive measures in the care plan. However, as a result of the case, conditions have been put in place, specifying actions such as ensuring mum’s cultural needs are met. This is a positive outcome as a result of the case. Mum still has an allocated PRPR to represent her, whose name was shared with us after the case, and who will review mum’s situation frequently. The social worker will still be involved too. I exchanged messages with the lawyers at the end of the case and we all agreed that we had worked well together. This is certainly not an outcome I would have expected without learning more about the COP through the Open Justice Court of Protection Project. 

It has been quite a journey. Learning from being involved and my experience, there are a number of observations and recommendations I would like to make in conclusion, as a family member: 

1. Transparency with the family

 From the start, it felt as though this was a process that was happening “behind the scenes”. We didn’t understand what the legal process was or anything about the Court of Protection. We felt that it was a very secretive process and we were being excluded, almost to the point that we were being judged as a family and seen as not acting in mum’s best interests.

I feel that better communication up front, with all the parties working together, would lead to better outcomes. Families know their loved ones best, and notwithstanding the fact that the law is looking after the human rights of an individual, I imagine that in the vast majority of cases an individual’s family want the best for them.  The family working with the legal representatives to ensure the best outcome seems to me something to aim for, if at all possible.

In our case, it felt as if the presumed position was that the family had nothing to add and should not be consulted. Involvement of the family and transparency about the process should be immediate from admission to a care home under an urgent DoLS authorisation, so that the family understands the consequences and are not surprised if a hearing is eventually reached. It would also improve the chances of the family being on board with the process. We have no idea how mum came to be legally represented, for example.

I’m sure that being “sidelined/ excluded” was not deliberate, more a lack of communication or a lack of clarity for professionals about how families should be involved. (Participating in the Edge training session for families involved in COP hearings showed me that sometimes communication can work very well).  

Family involvement would also ensure that there are no errors of fact in documents such as Position Statements which are submitted to the Court, as happened in our case. In fact, Position Statements, such important documents for the hearings, are often not provided in advance to families, who unless they become parties, are not officially part of the process. Best practice guidance on how to involve families in the COP process could be provided to social care representatives and legal representatives.

I’m sure that many families believe that once they have a registered LPA for Health and Welfare, it allows them to make all decisions about their loved one’s health and welfare in the event that capacity is lost. We certainly thought that mum’s increasingly dangerous behaviour due to her Alzheimer’s had reached the point where she wasn’t safe in her own home, even with a care package in place, and therefore she lacked capacity to make decisions for herself. We didn’t understand the formal mechanisms for assessing whether that capacity had been lost forever (the issue of fluctuating capacity). And we certainly didn’t understand that once capacity had been lost, with regards to DoLS, there is a separate legal framework and it is the Court of Protection which can make decisions on that person’s behalf, in certain situations.

I have since learned that if somebody objects to their detention, as mum did, it is their human right to have access to a court/tribunal to challenge the decision-makers otherwise the people around them are ‘judge and jury’. However, I have also learned that only approximately 1.7% of DoLS authorisations are subject to ‘appeal’ under Section 21A and I still find it surprising that mum is in this small percentage. I come back to “why us”? Even at the end of our process, I still struggle with this.

I also feel that this limit to the power of an LPA is not fully appreciated.  Searching the internet, the implication is that the power for all matters of Health and Welfare, including where the person will live, will transfer to the attorney in the event of capacity being lost (see examples below). I imagine that many families believe this to be the case. Mum did have an attorney and there was no dispute over its validity. But an LPA cannot authorise deprivation of liberty.^[6]Again, this is why DoLS and the role of the COP should be communicated more widely. 

2. Managing distressing information

There were certain aspects of the process that I believe increased our mother’s distress. For example, we didn’t tell her that the house had been sold, because we wanted to protect her feelings and save her from distress. We knew it would upset her. We also didn’t want to take away her hope. But we were told we should tell her as otherwise, at the hearing, it would look as though we were hiding things from her.

My siblings agreed that I would tell her, due to the dynamics of our family. It is a moment I will never forget. When I told her, mum told me she hated me and would never forgive me. She even told me that she didn’t love me anymore and not to go to her funeral. She was very upset and distressed and obviously I was too. I left. The next day I went to see her again, not sure what reaction I would get. When I saw her, she was pleased to see me and had forgotten about the previous day’s conversation. However, she had retained an element of the conversation as she knew that the house had been sold. To this day, she blames my sister for that. I do question whether mum really needed to be told about the house being sold, even if I understand why it was suggested we needed to tell her. I have since been told that in order to assess people’s mental capacity, they need to be given the ‘relevant information’. Even if there is an LPA in place, it doesn’t mean a person automatically loses mental capacity over all their decisions. Sometimes this means telling people information that they will find distressing to hear. 

The other aspect that increased mum’s distress were the meetings with various official people as part of the process, for example the expert commissioned to write the section 49 report on mum’s capacity, mum’s lawyer and the social worker. Mum has always reacted badly to people in authority and just “wanted to be left alone”. For the final meeting with her (new) social worker, the social worker described herself as a “helper”. This really alleviated any potential distress for mum and in these circumstances, I believe that some deception was justified and helped the process. There is no doubt in my mind that the whole process added to mum’s distress but maybe that is just a necessary part of ensuring that the best decision was made on her behalf. 

3. Becoming a litigant in person

Applying, and being approved, to be joined as a party to the case led to the family definitely feeling that we had a formal voice in the proceedings. I believe it really helped the case to be conducted in a positive spirit. I would encourage other family members not to be fearful about being joined as a party and becoming a Litigant in Person. This not only avoided legal costs for us but helped us to feel more directly included. The legal profession should have the confidence to involve family members in this way and indeed the Equal Treatment Bench Book provides guidance for legal professionals on how to treat Litigants in Person. For our part, we didn’t want to threaten the legal personnel involved but to help them. Again, however, this attitude was really informed and helped by the Open Justice Court of Protection Project and by being able to observe hearings to understand more about how they worked. 

4. Communication

One aspect of having family members involved in hearings and meetings such as Round Table Meetings (RTMs) is for legal professionals being mindful in their use of language, and modifying it as necessary. For example, “P “is the legal term for the “Protected Party”, and often that person is referred to by their initials to protect their privacy, even though anyone observing or involved is subject to a TO. It’s important to remember that P is a human being. To illustrate this point, suppose that my mum is called Elizabeth Jones (not, obviously, her real name). In our last RTM, one lawyer referred to her as “EJ”. The barrister initially called her “Elizabeth” and the care home worker called her “Betty”, as that is how she is known to them. The barrister picked up on this, and started using Betty too. However, one of the solicitors, not intentionally I’m sure but just by habit, kept referring to mum as EJ. Again, it’s probably a question of confidence and knowing what is allowed. For us, mum being referred to as “Betty” helped us to feel that Betty-the-person was at the centre of discussions, and not some abstract P. The use of acronyms is also very common to those who are involved in the COP routinely, but I appreciated the barrister correcting herself to “Official Solicitor” just after using the initialization “OS”, for example. 

5. Benefits

Looking back, I can now see that the case has had benefits for mum. Part of the case was seeing how mum’s care arrangements could be made “less restrictive”. This included assessing what community access could be available to her and how her cultural and spiritual needs could be catered for in the home. I don’t believe that we as a family would have thought about this as much if it wasn’t for the case. We assumed care meant she was safe and well looked after in terms of her basic needs. We also didn’t realise that the COP has a role in directing care providers to consider wider aspects of well-being.  Ensuring that this happens, though, when care home staff are so stretched is a different matter. The case directly led to me taking mum out into the community more than I thought was possible. The memory of those trips and the enjoyment for her and me will stay with me, and for that I am grateful. 

6. COP overload

The system is under a lot of stresses and strains. I observed one hearing during the course of which the judge mentioned that there were 44,000 outstanding COP cases. I admire how the judges can assimilate all the information that they have to for each individual case, sometimes information that has been received at short notice, and with at least three cases to be heard in a few short hours. The court staff, too, have a lot to deal with, in what is I understand not very lucrative work. Involving families earlier could help with the efficiency of this process. At the very least, educating families about the COP could help with understanding of how the law works so that families don’t misunderstand the nature and purpose of the COP. 

Conclusion

Open justice and transparency don’t just belong to court hearings. Exposing more widely how the Court of Protection works and why it exists is vital. Ensuring that families caring for loved ones know how the COP works could prevent a lot of angst for families, especially if they have LPAs which they think gives them the power to make all decisions with regards to Health and Welfare if that loved one loses capacity. I’m sure greater understanding for families would lead to a better process for everyone. 

When I imagine what it would have been like for our hearing if I hadn’t come across the Open Justice for Court of Protection Project, I imagine a much more conflictual process, due to our lack of understanding. I like to think that our family’s involvement in the case helped to ensure that the process ran smoother for everyone involved. 

And whilst a case like this is usually P vs Local Authority, where there is an LPA and other family members who have been involved in the care of their loved one for many years, it is so much better if they can bring that knowledge to the process and feel a part of it. For most families in this situation, it is a highly emotional time anyway, watching their loved one fade away to become a different person due to Alzheimer’s. Whilst the focus of the law is, quite rightly, on their loved ones, better awareness would help families understand the legal process better and enable emotions to be channeled positively, to ensure the best outcome possible. 

I’d like finally to come back to the term “Deprivation of Liberty”. It is such a loaded term. To us, mum was being supported in a caring and safe environment where, mostly, she seemed happy. And what is liberty? For us, she had more freedom when in care than at home. At home she had lost the ability to do most things. She couldn’t use the remote control to change the channel on the television. She couldn’t use a telephone to contact people. She couldn’t heat up a meal in the kitchen. She spent most days alone, apart from visits by carers or family members. In my eyes, the Alzheimer’s had taken away her liberty. But I now understand that the law views things differently. And of course, not all families are good families, with their loved one’s best interests at heart. But I imagine that most are. And I hope that sharing our experiences will help shine a light on the Court of Protection, to help other families in similar situations. 

Epilogue

This time last year, we had no idea we would be going to court. However, it’s my understanding that most cases are not resolved as quickly as ours was. I mentioned that the case was closed in December. In fact, in many ways, time caught up with mum and the legal process. Discussions about community access became moot after mum’s physical condition deteriorated. Access to outside space to be able to smoke, an issue that had been so important for mum, became irrelevant as she has now mostly forgotten that she smokes. Mum forgets within an hour that somebody has visited her. We take comfort that she is being well looked after and cared for. But it is also important to recognize that the law is looking after her too, something I have come to learn over the last few months.

Anna is the pseudonym of a woman whose mother was a P in a Court of Protection s.21A application.  Anna is not using her real name because she wishes to protect her mother’s privacy, while also hoping that other families can benefit from reading about her family’s experience.  Anna has also observed and blogged about s.21A hearings (e.g. Accessing a Court of Protection hearing as an observer: My experience) and about her very positive experience of a course run by Edge Training specifically for family members of people in care homes and hospitals under DOLS (see: “Deprivation of Liberty Safeguards: A course for families”. The next Edge Training course is on 20th June 2023 at 2-5pm and there are free DoLS Rights resources if you need information before then (click here). 

Appendix

Searches on “Lasting Power of Attorney for Health and Welfare” – some examples of what the internet says (searches don’t routinely reveal results that mention the role of the Court of Protection): 

1. From the NHS UK website: https://www.nhs.uk/conditions/social-care-and-support-guide/making-decisions-for-someone-else/giving-someone-power-of-attorney/

« A health and welfare LPA gives your attorney the power to make decisions about your daily routine (washing, dressing, eating), medical care, moving into a care home and life-sustaining medical treatment. It can only be used if you’re unable to make your own decisions. »

The guidance on the website goes on to say: “What health and welfare power of attorney cannot do: A health and welfare LPA does not come into force until the donor has lost the capacity to make decisions for themselves. »

2)    From the UK Government website: https://www.gov.uk/lasting-power-attorney-duties/health-welfare. “Health and welfare attorneys: As a health and welfare attorney, you make (or help the donor make) decisions about things like:

• daily routine, for example washing, dressing and eating
• medical care
• where the donor lives

You can only make decisions when the donor does not have mental capacity to make them.You must tell people involved in the donor’s care when you start making decisions. This includes the donor’s:

• friends and family
• doctor and other healthcare staff
• care workers, social worker and other social care staff

You may need to use your lasting power of attorney to prove to staff that you can act for the donor.

3)    What does a Lasting Power of Attorney for Health and Welfare involve? (https://ukcareguide.co.uk/lasting-power-attorney-health-welfare/)

There are two types of Lasting Power of Attorney. One is responsible for your assets and financial affairs – this is known as a Lasting Power of Attorney for Property and Financial Affairs. The other type is a Lasting Power of Attorney for Health and Welfare.

An LPA health and welfare enables a nominated family member or friend to make decisions on your behalf regarding your day-to-day care and wellbeing. These include:

• Personal care and care provision (such as choosing a home care company or residential placement for you, arranging meals, enabling you to take part in social activities)
• Medical treatment (your attorney may be asked to make decisions on your behalf regarding your medical care )
• Palliative care (your attorney may be asked to make a decision regarding life-saving treatment or end of life care)

The responsibilities listed above will directly affect you. For this reason, it is very important that the person you choose as your LPA for Health and Welfare is somebody you know and trust.

4)    From Age UK:  https://www.ageuk.org.uk/information-advice/money-legal/legal-issues/power-of-attorney/

LPA for health and care decisions

This covers health and care decisions and can only be used once you have lost mental capacity. An attorney can generally make decisions about things such as:

• where you should live
• your medical care
• what you should eat
• who you should have contact with
• what kind of social activities you should take part in.

You can also give special permission for your attorney to make decisions about life-saving treatment.

Endnotes

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^[1] Bold on the form itself

^[2] This seemed to us to suggest power for making decisions would pass to the LPA. See below for the results of internet searches on this matter, which seem to suggest the same. 

^[3] If a person is deemed still to have capacity, they can make decisions that others may consider not to be in their own best interests, for example to live in a house that is full of stuff (evidence of hoarding). It’s not a way for others to judge a person’s individual choices.

^[4] I’ve since learned that the DoLS makes admission legal and puts the legal safeguards in for P, to authorise the breach in her human rights

^[5] With the court’s agreement, family members can attend and be listened to, without being formally appointed as parties, but would not always have access to all documents 

^[6] See Section 4A Mental Capacity Act and para 7.44 MCA Code of Practice.