Haven or prison cell?

Case study

Situation: Gerard Francis is 48 years old and has, according to his hospital records, “moderate” learning difficulties. He has spent all his life in long-stay hospitals. He was taken from his mother – an unmarried woman also with learning difficulties – at birth as much for “moral” as social reasons.

Problem: Last year, Gerard’s hospital began closing down. People were gradually being moved out into other accommodation. Understandably, Gerard, with no family or social network outside of the hospital was very agitated at the prospect of a move. He would become aggressive – unusually for him. However, he finally moved into a small six-bed residential care home. Staff struggled to work with him – he had limited social skills and, although potentially capable, was used to having things done for him. As part of introducing independence, after great persuasion and a little friendly coercion, he agreed to go out for a walk. Although afraid, he was surprised at how much he enjoyed it. The next morning, before staff realised, he went out again. However, crossing the road outside the home he was hit by a neighbour’s car pulling out. Luckily, Gerard’s physical injuries were minor. However, psychologically he has been damaged. He now refuses, again, to leave his room and cries and screams that he wants to go back to his “big house”.

Panel responses

Linda Walz
Moving house is one of the most stressful life events we experience, even when it is the result of a positive choice over which we have control. In the case of long-stay hospital closure, people experience a long period of instability and insecurity as different parts of the hospital close down; routines are disrupted, people move away and expectations change. It can be a stressful time for care staff too, which contributes to an atmosphere of uncertainty and anxiety.

Understandably, the preparatory work done with people before such a move tends to focus on positive aspects, encouraging people to look forward to something better. It is important, however, to acknowledge with people that the process may be difficult and encourage them to understand and express the range of emotions they may be feeling. People with learning difficulties have traditionally not been encouraged to discuss more negative emotions.

It would be useful to assess Gerard’s communication skills, in particular his ability to explore and express his feelings. This may have to be done indirectly using visual materials, building up a picture of what makes him feel happy or unhappy, angry and frightened, and so on. Developing a life story book might help Gerard to understand what has happened to him, his friends and his way of life. Perhaps some of his friends from the hospital, whose move has been more successful, could visit him in his new home and talk about their positive experiences. They could also share happy memories of their time in hospital, using photographs, videos and so on.

It would be useful to know more about Gerard’s experiences in hospital over the years. Has he always found change and new experiences difficult? When he has coped with change, what has made things easier for him and can those things be put in place for him now?

The possible physical and psychiatric consequences of the accident should not be underestimated. Is there an unidentified head injury? Could the accident have triggered anxiety, depression or even post traumatic stress disorder? A psychiatrist could assess Gerard and advise on treatment options.

Kirsten Ashman
We all assume that people will be better out of hospital, given they have more freedom of movement and choice about what to do each day. We do not always explore the losses and grief associated with the move and the loss of networks and hierarchy.

It is important for Gerard’s move to be made as positive as it can be. Although it has had a difficult start, it could be retrieved with some careful planning and intensive support from the right people.

Staff should have been given greater information and support before Gerard’s move into the home and it may be useful to contact the staff who used to work with him to find out more about what things would make Gerard feel safer and secure in his new home.

Staff need to work on building up a relationship with Gerard and to engage and interact with him on things that he enjoys doing in his new home. It would be best to allow some time to do this, until he feels safe and secure in their company, before trying to encourage him back into the community.

Staff could also contact their local health team and see who could offer support, which could enable the staff to feel more confident and relaxed in meeting the needs of Gerard effectively. The psychologist and an intensive support team may be available to explore with Gerard the losses he has experienced and how this has made him feel.

It is important that a breakdown of the placement is prevented, or greater losses and upset could occur. Gerard needs to be given time to establish a safe place within his home, which is his and which he can invite people into and out of, when he wishes, enabling him some control over his immediate environment. This could be his room, as he is choosing not to leave it. Choices should be limited, as to not frustrate or confuse the situation, until he is more confident in his own ability.

Gerard needs a keyworker or an advocate who can be there to listen and help him voice his own needs and opinions to others working with him. If Gerard is to find the strength to move on he needs space, time and patience from staff, to make his transition from institutional care to the community a less frightening experience.

User view

Gerard’s story is about not really understanding our history. Professionals can tell you about Gerard’s history in hospital records and labels, writes Colin Gear. What we don’t know is what he likes, who are his friends, how he spent his days at the hospital. If I was supporting someone to move out of a long-stay hospital, I would want to ask them about their history. 

How quickly was he moved out of the hospital? I don’t like long-stay hospitals and want them all shut. However, I also understand that for people living there, especially for a long time or all their lives, moving out is terrifying. If we really want these people to have their rights, we should not rush them.   

Did Gerard have a transition time when he was moving out? Maybe he had never left the hospital grounds. If he hadn’t, did people support him to go out for day trips in the community doing every day things like shopping, getting the bus, or going to the pub while he was still living in the hospital? This way he was learning about a new world, while still having the safety of his old world.  

It seems to me that Gerard didn’t get support to make the change of moving out of the hospital and now he is in a bit of a mess. He is really scared now and the staff don’t know what to do. We can’t go back and make the change that has happened better for Gerard, but we can make what is going on now better. To me, people must stop trying to make Gerard go out, or even out of his room.  Instead, they should support Gerard where he is at. He could have an advocate, some of his friends from the hospital, and some other people with learning difficulties come to visit him; in his room, if he likes. Hopefully, he will come to trust these people and might, over time, want to go out with them. 

The staff could also try to find out what Gerard did at the hospital and see if he liked any of these jobs. Maybe he likes gardening? So, maybe the first place to go out might be the back garden of the home – he might feel safe there. Maybe he likes to cook? So, it’s cooking together and eventually he might want to go to the shops to buy food.  The professionals have messed up Gerard’s transition by rushing him and not taking the time to learn his history. Now, they have to do things the way Gerard needs them doing.  

Colin Gear is member of Milton Keynes People First – a self-advocacy group for people with learning difficulties.