12
Examination of witnesses
Adele Green and Andrea Attree.
Q27 Chair: Good afternoon, everybody, and welcome to this session of the Joint Committee on Human Rights. We are a parliamentary Committee, half of whose members are Members of Parliament, and half are Members of the House of Lords. As our name suggests, we are concerned about human rights.
In this evidence session this afternoon, we are looking in particular at the human rights of children and young people who are autistic or have learning disabilities, and are particularly affected by the lockdown because of Covid. We are very grateful indeed to our witnesses for giving evidence to us today. The key human rights issues that we are concerned about, which we looked at in the previous Parliament, before the last general election, are the right not to be wrongly detained, the right not to be subjected to inhuman or degrading treatment, and the right to family life.
On our first panel are two mothers of young people in this situation. We are very grateful indeed to them for coming to give evidence. They are going to speak to us from their personal experience. On the second panel are representatives of NHS England and the regulator, the Care Quality Commission, which is there to guarantee safety and standards. Welcome to Adele and Andrea, who are giving evidence to us today. Thank you so much both for joining us.
Q28 Fiona Bruce: Adele and Andrea, we are very grateful to you for speaking with us today to help us understand the particular impact of the coronavirus on your family. While it has been difficult for us all, I know it will have been especially difficult for you, so thank you so much.
Adele, you have a son, Eddie; he is aged 20. Andrea, you have a daughter, Danielle, who I understand is just 22. Adele, could you tell us something about Eddie’s current situation, why he is being detained at the present time, and how long he has been there?
Adele Green: My son, Eddie, is currently detained under Section 3 of the Mental Health Act. He has a learning disability. He is in an assessment and treatment unit. He has been at this one for two years, but in total he has been in units for seven years, since he was 13. He was actually about to start the discharge process back to his local community. There is quite a distance from where we live to where we visit, so that required some in-depth planning. He had a care provider and a bed in a type of sheltered accommodation ready and waiting. We were just about to start that lengthy transition. Unfortunately, that is when the lockdown started for us and everything since has stopped.
Fiona Bruce: Thank you. That is really helpful. Andrea, can you briefly tell us about Danielle’s situation, why she is detained, and how long she has been there?
Andrea Attree: Danielle has been detained on and off for 10 years. This current detention on Section 3 is just over three years in. At the moment she is in seclusion, not too far from us. Her previous providers were deemed unsafe by a CTR, so she was moved quite quickly, back into a more local bespoke environment. There was nowhere for her to go. She is there and awaiting specialist treatment. Our local authority has let us down catastrophically. We missed a window of opportunity for a specialist bed in a specialist unit, so we are now desperately looking up and down the country for somewhere to create a bespoke package for her.
Covid-19 has put a lot of obstacles in the way. She has not been able to see me, which has had a massive impact on the way she can cope. That has driven her anxiety and she has been in a very poor state of health.
Fiona Bruce: You have pre-empted much of my second question. I just want to confirm that Danielle is autistic. Is that correct?
Andrea Attree: Yes. She was officially diagnosed only last year, because she has been up and down the country in different units. Her first in-patient stay was in an eating disorder clinic. She actually has autism with PDA traits, so she stops eating when everything else is out of control.
Fiona Bruce: Adele, what has changed for Eddie during the coronavirus crisis?
Adele Green: Everything has changed for him. He was going out into the community daily. We were meeting him in local areas to build up his resilience to go back to the hospital. He has had daily therapy sessions and he is ready for discharge. When the lockdown came, it was quite quick in the sense that the hospital placed a blanket ban on anybody going in and anybody going out. Within a week, with the fear and anxiety, he tried to take his own life, which really blew us away. We were mortified.
He then had to be nursed intensively, on a one-to-one basis at every hour of the day, to keep him safe. Because there are live cases of Covid on his ward, the lockdown meant that he could not leave his room, so he spent about seven and a half weeks in his room. He has had experiences where he has not coped very well when staffing has changed. There are agency staff who do not know him very well, and do not have access to who he is and what helps him. Unfortunately, that has led to an increase in medication, restraint, seclusion and self-harm, all the things you would never want your child to experience.
Ultimately, it has meant that we have not been able to physically go and see him. We have been offered the Skype facility, which in some ways is helpful, but he gets upset post Skype. The end result is that he is now nursed off the ward in a separate pod area. Sensory-wise, he cannot cope on the ward. Part of his care plan used to include going off ward for regular walks and activities. The noise on the ward is quite disturbing for him. There are lots of other people with a learning disability on that same ward, with the same issue, who are also struggling. He has had no choice but to be moved into a separate isolated area.
Access to his treatment and therapy now has to be via the telephone. Nobody is coming in; nobody is going out. We are concerned by how that opens things up to abuse. We are worried that the type of care he gets is creating more problems with his mental health.
Fiona Bruce: Thank you for that really full and helpful reply. I am very grateful to you. Andrea, what has changed for Danielle? You touched on this in your first reply to us.
Andrea Attree: It was a rush to move Danielle from one provider to somewhere else that was deemed safe. While the environment itself is safer than where she was, the staff are not compassionate. They do not understand Danielle and the way her anxiety drives what she does. She has continually tried to take her own life. She is exhibiting behaviours that I have never seen before in the 10 years in which she has been in and out of hospital. She has been self-harming and then using her own blood to scribe on the wall, to try to get staff to understand how desperate things are for her.
With the staff, there are new faces all the time. There is hardly any continuous care, so she is anxious all the time. She is in sensory overload all the time because she does not know who is coming. She has two rooms adjacent to each other, so there is supposed to be a day room and a sleeping area. She will not sleep in the area where they have a bed because they keep secluding her in there, so she now classes that as a cell. She is scared to go in there, because if they lock that she is locked behind three doors instead of two.
Fiona Bruce: You touched on restraint, Adele. During this period, has Eddie been forcibly restrained or kept in solitary confinement? Could you briefly clarify your remarks on those issues?
Adele Green: Unfortunately, Eddie has been subject to restraint and seclusion and has been overmedicated, so he has been restrained through the medication as well. When he was restrained, because of the mix of staffing, types of restraint were used that possibly should not have been. There is an ongoing investigation into that, because he was harmed during it. He has experienced time in a seclusion cell within the hospital. Because of excessive head-banging when he was not coping, it was deemed that they needed to move him. It is mortifying to hear that all this is happening to your child.
Fiona Bruce: Because there is an inquiry, there might be a limited amount you can say about the forcible restraint, as I understand it was. Can you give us anything more so that we can understand that at this stage?
Adele Green: The hospital has policies on types of restraint that have to be used. Eddie is quite a clever chap in the sense that he knows these rules and regulations inside and out. If staff do not use the right type of restraint on him, he is quite vocal in telling us. Unfortunately, a different type of restraint was used. We have asked for the CCTV to be looked at, although apparently there is no CCTV in the bedrooms. It can be quite difficult. The hospital has acknowledged that it could have happened and there will be further investigation into it. We have not heard back, and that was within the first week of lockdown, so that is something else we will be looking into.
Fiona Bruce: Andrea, you talked about Danielle’s concern about being confined in a room. Has Danielle been forcibly restrained during this time and perhaps kept in what is actually solitary confinement?
Andrea Attree: Yes, she has been restrained most days over the last week or so. Most of those restraints, as Adele just said, are not appropriate. She knows the rules and regulations and will report that back to me. Because it is mainly agency staff coming in, they do not always have the knowledge to respond as they should with Danielle.
She is in solitary confinement in two rooms. She has access between the two because there is a bathroom. When she becomes very unsettled, they lock her in the one room. That restricts her further. She tends to wait until she is absolutely desperate to use the bathroom, because of the fear of being locked in the other room. That minimises the space she has and she then has no physical contact with the staff. When she has the two rooms, the first room—the living room, lounge room or whatever—has the viewing room directly in front of it, so if she wants eye contact with the staff she can get it. If she is locked in the other room, that is it; she has no eye contact or anything at all. They can just watch her on the camera, which she does not like.
Fiona Bruce: Can you give us any more description of the restraint that she has experienced?
Andrea Attree: She became very distressed on Saturday evening. The staff would not come in and talk to her. She climbed on a chair to break the CCTV so they could not just watch her from the viewing room; they would have to come into the room. They grabbed her from the chair and put her face down in the safety pod. She has a bruise on her nose and grab marks on her arms. They wanted to seclude her, but they did not in the end. One of the nurses who responded is quite familiar to her and managed to calm her down.
Fiona Bruce: To clarify, would you say that was an exceptional example, or does this kind of restraint happen frequently?
Andrea Attree: It is frequent. I have reviewed CCTV and seen it with my own eyes. I have not been able to see her since 20 March. Since then, I have asked them to save the CCTV of every incident, so I can review it and get staff to reflect on the damage they are doing.
Fiona Bruce: Adele, have you been able to visit Eddie? If not, can you make contact by other means? I think you mentioned Skype.
Adele Green: We last visited on 14 March. As part of the discharge process, we met in the community and experienced a meal together, which we had not done for over 12 months, so it was really lovely. Lockdown commenced in the following week, and we have not been able to visit since.
It has been incredibly difficult, because part of Eddie’s coping mechanism is to keep it in. When he self-harms, he does not want us to see how he has hurt himself. To him, a Skype is not always ideal. We might say, “Eddie, we’re really sad to see you’ve hurt yourself”. That would upset him. Also, it makes him incredibly homesick. It was only last week that he said, “I’m up for it. We’ll try a Skype”. The technology is not the best. Sometimes there is no sound; sometimes there is no picture, which is frustrating for me. He has waited so long just to see another person, so I think it is incredibly frustrating for him. It is not enough.
Fiona Bruce: How do phone calls happen and how regularly?
Adele Green: They are not regular enough. We phone for regular updates. Communication from the hospital has been quite poor. For us to speak with Eddie, he has his own phone. It is hit and miss. Some days we speak to him several times. Sometimes it is once in a week. It depends how he is coping with what is going on.
Fiona Bruce: Do you call him or does he call you? How does that work? Help us to understand that a bit more.
Adele Green: Quite often, he will call us, which is fantastic. It is often to inform us that things are not going well. The more he phones me, the more I know he is more anxious and not getting the help around him. We tend to phone the ward for updates rather than try to contact him out of the blue, because that might unsettle him. Generally speaking, we know that the more he is calling us, the more unsettled he has become.
Fiona Bruce: What response have you had to requests for visiting?
Adele Green: There are no visits. There is a blanket ban. They released a text message to everybody through WhatsApp, reiterating that it is to keep everybody safe. They are looking into an advocate being allowed to go in wearing PPE. That was the response we had over visiting.
Fiona Bruce: Thank you. Your answers are very helpful and so clear. Andrea, thank you too for all you are telling us. It is very informative. Tell us about how often you have been able to have contact with Danielle.
Andrea Attree: Danielle has her own telephone, because as soon as she was placed in seclusion where she is now there was no other facility for her to have contact with us. They allowed her to have her own phone for limited times throughout the day. She generally prefers to message. She finds it quite stressful to talk on the telephone. For FaceTime, she does not get a great signal, so it induces more anxiety if she cannot hear or all of a sudden the picture goes. We mostly communicate via WhatsApp message.
Some days I barely hear from her, because she is sleeping. It depends on what has happened the previous day, whether she has been overmedicated or has exhausted herself through fighting restraint. Other days I hear from her almost continuously. She is anxious about what staff are coming, what they are saying to her or whether she is going to get any dinner. With her autism, she is very selective about what she will eat, and she does not know the menu until they literally bring it to her 10 minutes before lunchtime. There is anxiety all the time and it is exhausting for her. She is in a constant heightened state of awareness, which causes these sensory meltdowns.
Fiona Bruce: What has the answer been to visiting requests?
Andrea Attree: I have been very persistent about the fact that this is supposed to be Danielle’s home. She is not supposed to be in hospital. I was promised that I could have regular visits, because she is not on a ward. They have shut off their 136 area, so she is in a completely separate corridor that can be accessed away from any of the wards. That initially met with a no. I continued to persist. I managed to see her on her birthday. She was 23 on 5 May, and I saw her for a short time then. I was allowed to take in only a couple of things, which had to be disinfected. That is really stressful for her, because she does not want people touching her things.
We had that visit and afterwards she was an absolute mess. I have not been able to visit since. I have continued to point out that this is having a detrimental effect on her long-term health, with an escalation in her anxiety-driven behaviour. She is expressing herself in ways that I have never seen before. It is absolutely devastating. She is ligaturing regularly. She is self-harming to extremes, banging her head. She has smashed all her knuckles on her hand. We had a CTR last week and today I had an email to say I can visit her at the weekend, so there has been a breakthrough.
Fiona Bruce: I am going to follow on from that directly and ask a question that I rather think I know the answer to. Do you feel she is safe?
Andrea Attree: No, not at all. I am in a heightened state of awareness at all times as well. I have my phone with me at all times, because I dread what she will do next. It has been absolutely devastating.
Fiona Bruce: I am interested to know what activities Danielle is given the opportunity to engage in during the course of a day. Just describe her day.
Andrea Attree: Her activity programme was supposed to be quite full. When she first moved, there was a programme that was going to run between 9 am and 4 pm. It did not materialise. She was moved to that unit on 4 February. It never really got off the ground, for one reason or another. I think they were holding back a bit, because this was supposed to be a very short stay. Like I say, she is in a 136, which they have had to shut, so it has caused a lot of anxiety for the staff there. It is impacting on other people, not just Danielle, because they do not have a 136 to use.
Her day now consists of one session of OT for half an hour, if that person is available and Danielle is in a state to participate. Other than that, there is nothing. This weekend, for example, staff refused to come into the room with her for the whole weekend because of the blood on the walls that she refused to clean off. They were saying it was a contamination issue, so she has had nothing all weekend.
Fiona Bruce: My last question is technical. Do you feel that Danielle’s human rights are not being respected? Do you feel that she is being subjected to, for example, inhuman or degrading treatment and that her rights to a family life are not being upheld?
Andrea Attree: Absolutely, yes. She is left for days in the same clothes. They have not washed her clothes and I am no longer allowed to wash them. Obviously, I am not going to and fro. She does not use the bathroom regularly because of the fear of being locked in the other room. She sleeps on the floor for the same reason: she is terrified of being locked in that other room. Her needs are not being met at all, including basic things such as helping her with food choices. Some days she does not eat at all because there is nothing that she will eat, yet all this information was given to them very clearly before she arrived. Even pre Covid, her needs were not being met.
Fiona Bruce: Thank you very much, Andrea. You have been extremely helpful to our Committee. You have given us a lot of information that will be very useful to us.
Adele, do you feel that Eddie is safe? Do you feel that his human rights, for example not to be subjected to inhuman or degrading treatment, are being respected? Is his right to a family life being respected? To give us a little flesh on the bones of that question, perhaps you could describe any activities that he has during the course of a day.
Adele Green: At the moment, because of Covid, activities are quite limited. He is not on the ward so he cannot take part in those. He does not have access to the normal psychology, psychiatry and OTs. Those services are now available only via the telephone, which is not always ideal, as I am sure you can imagine.
As to whether he is safe, I do not think he is. On the hospital’s website today you can see a plea to people for PPE equipment. I am unsure how he can be kept safe from infection. We know there are people in the hospital who have Covid, so obviously we are quite worried about that. He is causing so much self-harm that he has one or two-to-one staffing. How is that still able to happen? We do not get to see him. As for his right to a family life, there is not one at the moment. He is supposed to be on a discharge plan, back to his home town in Bristol. That is not happening. That is all devastating for him and us.
Fiona Bruce: To clarify, you do not feel that his human right not to be subjected to degrading treatment, for example, is being respected. I do not want to put words into your mouth, so I am asking you to clarify that for the record.
Adele Green: We do not feel that those human rights are being respected. He has been restrained inappropriately. He is having medication that he was not having before the Covid. We definitely do not feel that his human rights have been upheld.
Fiona Bruce: Adele, thank you so much also for some really excellent and helpful evidence to our Committee.
Q29 Baroness Massey of Darwen: I want to thank you very sincerely for your frankness and honesty in delivering your answers today. It is most moving. You must have very many concerns. You have expressed so much today about restraint, about your children’s changes of behaviour and about them not being free in their rooms and so on. I want to come on to your concerns during this Covid difficulty, which has obviously intensified the problems for you and your children. I know you have concerns. Have you tried to report them to anyone, either the institution or anyone else? What has the consequence of that been? Has action been taken? Do you feel involved in your child’s welfare by the institution or are you excluded?
Andrea Attree: I have tried to report it to both the institutions she is in. I deal directly with the consultant and the nursing director. They quite often ignore my emails. I was supposed to have regular meetings with them. That has not materialised. I have reported it to the CQC. I said a couple of weeks ago that I was going to raise safeguarding, and then they told me they would have to change the team again, which would make everything even more unsettled for my daughter. We agreed that certain changes needed to be made.
We had a CTR. They came along and agreed with what I was suggesting. Nothing has changed at all with regard to extra support for Danielle. She is on three-to-one and is still self-harming very severely. Most of the time, if the staff are with her in the room they just watch her do it. When it gets dangerous, they will restrain or seclude her. Quite often, they do not feel comfortable in the room with Danielle when she is in a really heightened state of anxiety, so they watch her from the viewing room. She will head-bang, cut herself and ligature. She phoned me the week before last. She had stripped off, because she was terrified that all the men were going to come and restrain her, so that slowed that process down. She has never done that before. This tells you how scared she is. She is so terrified all the time.
Baroness Massey of Darwen: Does anyone contact you about this, or are you the one who has to make the initial contact?
Andrea Attree: I make all the calls. She is not in a ward. She is in a 136. She has two rooms and a bathroom. I do not know if you have seen the photos, but I supplied photographs of her living area. Like I say, she is terrified all the time. She will message me: “Mum, this is going on. That is going on”. I phone in. I try to talk to the staff and they just say, “Talk to Dr Mo. Talk to Louise Clack”. These are my two. I emailed them the day after the CTR and it took them over a week to reply to me. The answer was that I needed to speak to the team leader, who replied to me only today. That is 11 days after.
Baroness Massey of Darwen: Adele, have you had the same kind of experience of this contact and non-contact, and having to do the work yourself?
Adele Green: Unfortunately, we have experienced a real lack of communication, especially since the Covid outbreak. It was Eddie who reported things to us via our calls, which would then prompt me to get in touch with the hospital. They would say, “We thought people were still in contact with you. We thought you were being updated”. Even knowing that, they still do not give us the regular updates that they were giving.
We have a go-to named person, who is fantastic, but there is only so much you can go to them. It feels like you are annoying people and the answers are not coming back. We are still waiting to hear on the incident at the beginning of the lockdown, the procedures, what happened, what went wrong and what could have been done better. It is quite painful. Originally, we were to have updates after every ward round and if there were any changes, such as seclusions or changes to health. In the interim period, that did not happen. There have been medication changes. He has lost three stone, or thereabouts, since being in the hospital. There has been a massive decline more recently since the lockdown. We are quite frustrated. The information should not come from him. It should come from the professionals.
Baroness Massey of Darwen: Thank you both very much for those very honest and frank answers.
Q30 Joanna Cherry: Thank you both for coming along today and for your honesty. Andrea, I wonder if I could start with you. You mentioned there that you had reported concerns to the CQC. What kind of response did you get?
Andrea Attree: They went in and visited Danielle. They said that, in the circumstances, her care was satisfactory.
Joanna Cherry: What do you think of that response?
Andrea Attree: I emphatically disagree with that. It is not satisfactory at all. She is not safe. I know that her behaviour is very challenging, and it is frightening at times. There are three members of staff who should be engaging with her and helping her feel safe. It should not be a choice; they should not be able to decide to just sit in the viewing room and watch her melt down. It should not be. That is not satisfactory.
Joanna Cherry: I am sure you will be aware that if someone is detained under the Mental Health Act, they are legally entitled to health and support from an independent mental health advocate. That is unaffected by the coronavirus crisis. They are still entitled to that support. Does she have a mental health advocate?
Andrea Attree: No.
Joanna Cherry: Why is that?
Andrea Attree: I believe that in her previous setting she was offered one and declined. She does not like new faces, so she will very often automatically say no to something anyway, especially if she has not been able to talk it through with me and gain understanding of what is going on. She feels that she is being tricked. She is on constant red alert that she is going to be restrained and dragged out of this building and into another. She has been moved 11 times in three years, so she is in a constant heightened state of anxiety. While she has been in this setting, she has not been offered one. It was only because I mentioned it that last week it was suggested at the CTR. I believe she was asked and she declined, but she was asked just after she had had an incident. Nine times out of 10 she will say no anyway, because she does not understand what it is about.
Joanna Cherry: If somebody, maybe you, her mum, was able to explain to her what it is about and reassure her, do you think she might take advantage of having somebody to fight her corner?
Andrea Attree: Absolutely, yes. We get the information, we look at it, I explain it in a way that she will understand and then she can make an informed choice.
Joanna Cherry: You think that if the care provider, clinicians and staff gave you an opportunity to be involved in a discussion with Danielle, she might agree to have an independent mental health advocate. That might benefit her.
Andrea Attree: A prime example of that is her care co-ordinator. We had a supported phone call. He called me when I was visiting Danielle and she just said hello, but she listened to him and me engaging. He was just describing a bit about himself. Then I had a meeting with him. He said, “Take my photograph if it will help”. I went back to her and said, “This is what he looks like. I think he is a really good man”, and we built from there. Now Danielle will take a phone call from him independently, which is a really big deal for her. She does not do that.
I have offered and offered to facilitate this with the setting she is in at the moment. I have offered to go in and help train the staff. I offered to do that on the CTR, just so they knew that this was something I had already offered, and the team leader said she would think about it.
Joanna Cherry: Did she give you any timescale for when you might get a response after she has thought about it?
Andrea Attree: No. I waited 11 days for an email to clarify whether I can visit my daughter and what the procedure is, so I honestly do not hold out much hope.
Joanna Cherry: Adele, I wonder if I could ask you about this topic of independent mental health advocates. You mentioned that Eddie, your son, had been told that his advocate could go in wearing PPE. Is that right?
Adele Green: The hospital has sent a generic message to everybody, saying that it was looking into an advocate being able to access the building wearing PPE and that it is hopeful. Eddie needs to build a relationship with somebody and have real trust in them in order to access that service. It will be a slow process to build up a relationship with somebody. It cannot happen instantaneously, just because of how he is. It is encouraging to hear that the hospital is trying to think out of the box, but I am heartbroken that the service is not already there. I believe they said they could access by phone.
Joanna Cherry: That is there already.
Adele Green: Yes, but obviously they need a lot of support with that.
Joanna Cherry: Has Eddie benefited in the past from having an independent mental health advocate?
Adele Green: Yes. In a different setting he had one of the most fantastic advocates, a lady called Alison. She would go and see him several times a month. He would fill out a really in-depth booklet with her. It was a slowly built-upon process and it worked really well, but that has not continued in adult services. It could be a different advocate. Quite often, because he does not know them, he does not want to engage with them.
Joanna Cherry: You are saying that when he was in child services he built up a relationship with the one advocate, but since he has been in adult services there has been no effort to facilitate a similar arrangement with the one advocate, and he is passed from person to person.
Adele Green: He is just told that he can access them if he wants them. There is one who comes on the ward, who says that they approach him and he does not want to talk to them. They do not then think, “I need to build a relationship with this person”. They just take it that this person does not want their help.
Joanna Cherry: What do you think the current care provider needs to do to improve their facilitation of the relationship between your son and an independent mental health advocate?
Adele Green: They need to listen to the families and what has worked for other families previously, and to take those ideas on board. They perhaps need an advocate service that is willing to take the time to build up relationships with people and has the relevant background training in things like learning disability and/or autism. Not all of them do.
Joanna Cherry: You are essentially saying that some of these independent mental health advocates are not trained in dealing with learning disability or autism. That makes them of limited utility to people like your son. Is that right?
Adele Green: Yes.
Chair: Thank you both, Adele and Andrea. As Fiona Bruce said at the outset of her questions, the Covid lockdown is a worrying time for everybody, but it is clear from what you have said that the situation for Eddie and Danielle is immeasurably more worrying for them, and more worrying for you as well as to whether there will be serious harm. Fundamentally, they are entitled not to be subjected to inhuman or degrading treatment. They are entitled to have their right to family life protected.
You have explained, in the public domain, on record, the reality of what is happening on the ground to very vulnerable young people. It is very important that we put that to our next panel of witnesses. I wish you and both your children well. We will put those issues to the next panel, in particular the fear that the current situation is making things worse for them, because, were it not for the Covid lockdown, they might have been discharged to a more appropriate setting. We will take these questions forward and hope we can make some progress. In the meantime, thank you very much indeed for answering our questions.
Oral evidence: The Government’s response to Covid-19:
human rights implications
