The Elephant in the room(part 2)

So my brother starts at his local, smaller base, with a one to one support and everything is fine to start with and then we started getting complaints from the staff that my brother was occasionally pushing or kicking the other service users. This kind of behaviour is very uncharacteristic of my brother and he has to be either severely provoked or frustrated to lash out. Indeed he never lashes out at home. And there was never an explanation of any circumstances as to why he had lashed out. It was always made to seem as if it was totally unprovoked, which I didn’t believe for an instant.

We had several meetings with the manager, his one to one support and a community nurse for people with learning disabilities who specialised in behavioural issues. Both his family and the community nurse discussed with the manager and his one to one some strategies of how to manage his behaviour, and things such as giving him a pictorial time table etc were agreed. The manager was then meant to go back to his staff and feed back what was discussed at the meeting to the rest of his staff so that they were also aware of how to manage his behaviour. Nothing seemed to change and they were now starting to report that my brother was starting to touch the other service users inappropriately. At the time, he had a really good social worker who suggested that we look round a private day centre. We agreed to have a look around and my brother really liked it and the owner seemed nice enough. But when we told social services that we wanted my brother to go there, they said that they wouldn’t fund it. Shortly after this the social worker who had been really helpful left and another social worker was appointed who wasn’t very helpful at all. In fact he was probably the worst social worker I have ever come across and could have destroyed my brother. So we had yet another meeting to discuss how to manage my brother’s behaviour and only a week later my mum had a phonecall to say that my brother had touched a female service user inappropriately and the member of staff that was there didn’t know what to do!! And remember he was meant to have a one to one support!! By this time we had had enough. So we requested again that my brother be moved to private day care. We were told that if we wanted this to happen that we would have to put in a formal complaint (These days it is common practice to use private day care but at that time it was not common practice). We said that we didn’t want to put a formal complaint in but if that was what we had to do to get him into private day care then we would reluctantly do that. As soon as the complaint went in, everything escalated. The complaints about my brother were getting more frequent and my brother seemed to be very unhappy and the muttering and loudness when he got home were more pronounced. Also, the things that they started accusing my brother of were getting more and more worrying. I dropped my brother off one morning and there was this very abrupt young girl who was in charge. My brother’s one to one introduced me to her as my brother’s sister and this girl didn’t even look me in the eye, she just said ‘oh hello P’s sister’ in a very sarcastic tone! The one to one looked embarrassed.

The final straw came when my brother was sent home one day for allegedly hitting another service user with his communication book, which was a thin exercise book. The social worker took my brother home and let it slip who the service user was that my brother had allegedly hit. It just so happens that my mum is friends with the mum of this service user, so my mum rang her friend to see how her daughter was and to apologize. This friend said that her daughter was fine and not to worry about it. The next day this friend rang back and told my mum that her daughter had said that my brother hadn’t hit her, and that he  had caught her nose when he was taking off her glasses. I was absolutely furious!! I knew there was something seriously wrong here and that my brother needed protecting from these people who were meant to be caring for him. I was scared for his wellbeing and because he couldn’t speak very well, he couldn’t stand up for himself or tell his side of the story and so he was extremely vulnerable against these so called professionals who were meant to have his best interests at heart. I knew that we needed to take some drastic steps so we decided to seek legal advice. I also rang the manager of social services, who had previously been a nurse (and a very good nurse too). I asked her why my brother had been sent home when it had been agreed at meetings that he wouldn’t be sent home and also because the incident wasn’t even that major as the person hadn’t been knocked to the floor and there were no marks on her. The response that I got was ‘Oh yes she has. P slapped her across the face and she has red marks on her face’. I then asked, well how come the person who it happened to says he was taking her glasses off and caught her nose and there is no mark there?’ The manager was stunned and said ‘The service user said this?’ So I told her YES! She then didn’t know what to say.

As soon as the solicitors were involved, the incidents escalated even more and a week later he was sent home for allegedly having an erection at the day centre and being aggressive, and he was suspended from going back. My brother was also terrified of getting on the bus to go there anyway by now so I was very concerned as to what was happening at this day care, and we also found out through the complaints process that day services for adults with learning disabilities are not monitored by CQC. This was a huge shock for me as I presumed that they would be and I don’t understand why they aren’t as they are some of the most vulnerable people in society.

We told my brother’s solicitor that he had been suspended and the solicitor told social services that they were under a legal obligation to provide day care for my brother. So then social services pulled the dementia card out of the bag again and referred him to the mental health unit again that assesses dementia. My brother went there every day for about 6 weeks to be assessed. While he was there they said that they felt that his behaviour had deteriorated greatly since last time. But the behaviour that they were describing we had never seen at home so it didn’t add up because if it was a deterioration in his brain then he wouldn’t behave differently in different places. He would behave the same everywhere, so to me the behaviour that they were seeing was learnt behaviour that he had developed at day care, probably because the staff weren’t supervising the service users and then the other service users were picking on my brother and he was lashing out and then getting into trouble. The whole of this time was extremely stressful as I feared for my brother’s future and his care. I had written reams of accounts that the solicitor could use for evidence. Every night, when I got home from work I would be typing away. Then the mental health unit wanted my brother to stay overnight for a few nights to which my mum refused to allow because his behaviour wouldn’t improve with him staying overnight. They wanted to try him on tranquilizers!! So instead, they sent the tranquilizer home for my mum to give him. Apparently they hadn’t used this tranquilizer before and they were really strong. Imagine if my mum had given it to him and he had had a reaction?!! I was apaulled but powerless to do anything at the time because of the way that my shifts fell at work. But then came the opportunity to air my concerns as I had a Monday off and they held a ward round every Monday, which was a multidisciplinary meeting. At the meeting were all the ward staff, the Consultant and the social worker. Everyone in the room gave their account of my brother’s behaviour and then they talked about the tranquilizer. I then said that I appreciated what everyone was saying but I didn’t understand why he didn’t behave like that at home. That we, his family had never seen him behave like that. The Consultant was the only person who listened and he said that if he was behaving differently in different places then to put the medication on hold. I also offered to spend a day at the unit with my brother for me to observe his behaviour and to see if his behaviour was any different while I was there. The social worker looked really annoyed with the decision to put the medication on hold.

So a week later I spent the day on the unit. I thought that my brother was misbehaving a little but the staff thought that my brother’s behaviour had improved 100% to what it had been like, which was interesting. I found the whole experience of being there and watching him and everyone else who was an inpatient there, very distressing. It was just not a natural environment at all and felt very institutionalised, even though the staff there were very nice. It was just a horrible experience. I just kept thinking of all the people with learning disabilities who didn’t have family to stick up for them. Who didn’t have a voice and were victim to this system. How many of them were unnecessarily being medicated and sedated because it was easier than managing that person’s behaviour. So scary and worrying. But anyway, I think the fact that my brother behaved differently while I was there, made the staff think so they took him out to a carol concert and he behaved impeccably.

So during this six week period my brother had been assessed by a large multi disciplinary team and a multi disciplinary meeting had been arranged in January. By this time, I had got to the stage where, I was making myself ill with worry. I just had to let go in the end and trust that whatever happened and whatever decision was made would be in my brother’s best interests.  Just before the meeting we got the report from the psychologist, who recommended that my brother go to a different day care. Wow that was a turn around, so let’s see what everyone else had to say. There were approximately 15 professionals in the room, including the social worker and his manager. During the meeting, everyone took it in turns to feedback from their assessment and say what they thought should happen and everyone in the room said that they thought that my brother should go to a different day care. The manager, however, kept say ‘but what can another day care offer that the Council day care can’t’. In the end I just turned to her and said ‘HE IS NOT GOING BACK THERE’. So she immediately back tracked and  started suggesting domicialliary care and then suggested another day care. We went to  look round that one but my brother didn’t like it and neither did we and then out of the blue my mum was contacted by the day care that we had originally said that we wanted my brother to go to. Social services had finally agreed that he could go there. To be continued………….


The elephant in the corner of the room (part 1)

So here I am and it now feels the right time to talk about my brother. My brother the funny, larger than life, caring, sensitive,  geniously talented actor and dancer who just happens to have Down’s syndrome and the journey through a system of day services that has repeatedly tried to label my brother as being out of control because the people who were caring for him were unable to manage and not able to/willing to understand his behaviour because they saw his disability rather than the person and they weren’t willing to learn how to communicate with the person beneath the disability. A system of professionals who always thought that they knew best and that time and time again my family have proved them wrong.

Adults with learning disabilities are among some of the most vulnerable people in society and unfortunately, the people whom are meant to be there to care for them and protect them are doing far from that. 

My brother was born with Down Syndrome, which means that he has a learning disability due to an extra chromosome. People with Down’s Syndrome can range from having a mild to a severe learning disability and they can have physical problems such as heart or gut problems. My brother has a moderate learning disability and has the understanding of perhaps a 3 year old but that is hard to assess because of his communication difficulties. I don’t say that he has a mental age of 3 years old because that isn’t accurate. He is 51 years old so has gained 51 years of experience so it is impossible for him to have the mental age of a 3 year old but he is only able to understand the world probably from the level of  a 3 year old who has been around for 51 years plus he has the body of an adult so it is sort of complicated. He is short in stature, typical facial features of someone with Down’s but physically he is well, despite being diagnosed with a heart murmur when he was a few days old. 

This blog is about his journey through the daycare system and how that has impacted upon his emotional health and his care needs and how it has affected us, his family, who are his voice. 

My brother attended a special school until he was 19 years of age and then he attended the only day care which was available in those days, an adult training centre for people with learning disabilities. He attended there for many years and there never any issues reported. He had his own pictorial timetable, which he could follow himself, and he knew where he was supposed to be and what he was doing at each moment of the day with minimal supervision. They did things such as life skills where they learnt how to do things such as make a cup of tea and a light meal, use a washing machine, wash up the dishes etc, they did creative things such as art and wood work and they had an arrangement with one or two local companies where they would pack things such as nails and screws etc and would get paid £5 a week. This was seen as slave labour by some people, which is was when you look at how much they were paid but instead of giving them more money they stopped the packing at the training centre and so they also stopped the incentive. My brother enjoyed the work and bringing home the bit of money that he did so it was actually dis empowering to him because it wasn’t replaced with anything which was just as or more meaningful or purposeful. People with disabilities need a purpose just the same as everyone else does and probably more so because of the discrimination that they face on a daily basis. It is often hard for people to see past the disability where someone has a learning disability but they all have the same feelings, hopes and desires as everyone else. You can forgive someone, perhaps, who has never met someone with a learning disability before for not seeing this but for the professionals who are working with them to not see this is unforgivable in my book but unfortunately it is all too common place.

Over the few years following this the council began cutting funding to the training centre and the activities that were available became less and less. It was also announced during this time that the powers that be had decided that training centres were not a good place for someone with a leaning disability to go to because they were too big and institutional like, so the government gave local authorities a deadline for closing the training centres and ‘integrating’ the clients that went to these training centres into the community. In theory this sounds a really good idea but the reality is that firstly people with learning disabilities find change extremely difficult as they need routine and continuity and secondly there was insufficient funding made available to enable the transition and ensure minimal disruption to the existing services.

In our local authority they decided to open up smaller bases throughout the city. Some of the clients that went to the training centre were able to get a small job or go to college, and this is what the government meant by integrating into the community, and this is a great idea. However, for a lot of the clients that went to the training centre they had either been going there for so long or their learning disability was too great for them to be able to do paid employment. So the small bases were for these clients. On the surface of it, it sounds like a really good idea as the groups are smaller and instead of doing all of their activities at the same place, they would access more activities in the community. Great if there are the activities to access. 

And then there was the transition period. Our local authority decided to open the bases separately, which meant that there were some staff working at the bases as they opened while there was still staff needed at the main training centre. And I am almost certain that they wouldn’t have any extra staff to help with this phase. It was during this time that my brother started to display some behavioural issues. He was muttering quite a lot, particularly when he got home from the training centre, he started taking linger to eat his meals and he was becoming involved in ‘incidents’ at the training centre where he was either the victim or instigator of mild violence, which was quite a shock to me as I had never ever witnessed him be violent. The whole transition period into the smaller bases took a year and during that year my brother went from a happy relaxed person who was maybe a little bored due to not having as many activities to not sleeping, constant muttering, becoming more stubborn and taking longer with eating plus some outbursts of violent behaviour where he had allegedly lashed out at other service users. It was obvious to me that he was stressed. The professionals, however, could not see the link with my brothers behaviour and the transition of day services. They didn’t look for any possible environmental causes for his behaviour first but assumed it must be internal and to do with his learning disability. People with Down’s Syndrome have an extra chromosome on the gene which is associated with Alzheimer’s, which means that they are at a much greater risk of developing the disease. So my brothers care takers told my mum that they thought that he had Alzheimer’s and were referring him for an assessment. They told my mum this news over the phone and with no explanation about the correlation between the two. So for his assessment a multidisciplinary team from the mental health unit for people with learning disabilities observed my brother and worked with him both on their unit as a day visitor and at the training centre. While they observed him at the training centre they saw other service users bullying my brother and there were some staff around but they didn’t seem to notice what was going on. What was interesting though was the fact that when my brother went to tell someone about what was happening, he didn’t go to the permanent staff at the training centre but he went to the member of staff that had come to observe him from the mental health unit. This rang alarm bells for me as it seemed that my brother realised that he wouldn’t get any help from the permanent staff so he didn’t bother to seek help from them. Also, my mum visited once and she witnessed a member of staff leading a group of clients down some stairs who were all hand in hand as if they couldn’t manage the stairs on their own. My mum said it looked a scene out of one of the orphanages in Romania. To me this said that they didn’t have enough staff left at the base to provide adequate care and would explain why the bullying had started and my brothers deterioration in behaviour, because there wasn’t adequate supervision, and all of this coincided with the transition stage into the smaller bases. This must have been a massive operation to coo ordinate and plan but it seemed like no extra staffing resources had been put into place and this was to my brothers detriment. But unlike you or I when we get stressed and the behaviour disappearing when the stress has disappeared, when someone has a learning disability that behaviour stays with them and becomes a habit so it can have devastating long term consequences and nobody seemed to realise this or, for that matter, care that much. He was just a learning disability, a problem that would more than likely become more of a problem and it was his problem. Not the bullying, the changes in staff as they worked in the bases, not the changes in routine, not the fact that the staff didn’t listen to him when he told them that he was being bullied, it was all his problem and was caused by his learning disability. Anyway, the assessment that he had showed that he didn’t have dementia. There was a meeting, however, and it was decided that his behaviour warrented increased support than he was currently getting so he was given a one to one support when he moved to the smaller base. So in theory things should have improved but they got much worse. To be continued…………