We are no longer alone

Relationships are vital to everyone’s wellbeing. When working well, they provide us with friendship, learning, appreciation, love, laughter, support and an ability to cope when times get tough. But when relationships aren’t right, it can leave people feeling completely isolated and alone.

When relationships between people break down, families of people with learning disabilities can feel increasingly isolated and frustrated, confused about what is happening, or simply that they aren’t involved in the support being provided to their relative. As part of Learning Disability Week 2016, we spoke to Louise, who saw big differences in her brother, Edward, once their relationship with the people around them changed.

“Prior to Certitude, I am not sure that I had any real continuing relationships with the people supporting Edward. He had some key workers who used to bring him out in the car for our trips, and I talked to them about how he was. But when we knew the house would be closing there were a lot of staff changes and I didn’t have any continuing relationships with anyone to talk to about my concerns. This was also the case for Edward. People didn’t know him and were dealing with a large group of people who needed to be rehoused so, as he doesn’t like change, this must have been unsettling for him.

I felt awful at this time. There was only me to speak up for Edward, as our mother had died 3 years earlier and we don’t have any other close relatives. In the middle of all of this uncertainty, my partner died after a long and traumatic illness. So I was being asked to respond without really knowing what was going on, and not understanding what was best for Edward as we didn’t have any meetings about him. All I knew was what I used to see when I took him out in the car.

On our side.

When we found out that Certitude would be taking over the contract, I was invited to a meeting. There were about 20 people in the room, including Edward who hadn’t got the faintest idea what was going on. To be honest, I felt the same. There was talk about how Edward was difficult, which I found incredibly uncomfortable, then the people from Certitude spoke up. They were on Edward’s side. They were on my side. They cared about us and empathised with how I felt. They made it clear that their first concern was to ensure that Edward lived somewhere that suited him, supported by staff who would help him get the best out of life, not just function, as he had been doing since 1956.

Following that meeting, I felt confidence with the staff I met. A lot of care was taken furnishing Edward’s room, which was at the front of his house so that he could watch the buses go past – one of his known pleasures. The staff were very caring and approachable; they wanted to help Edward live his life. So I started to relax, stopped feeling anxious about the move, which I knew from past experience was traumatic for Edward. And now, I tell everyone about Edward and what has happened – I want to spread the good news and give some comfort to other people who may be in the same situation. Before, I never really talked about him, because I felt so sad and apprehensive about his situation.

A person in your own right.

Edward now knows lots of people because he gets out and about so much more. For example, he goes to the Church lunch club and people from the Church have been to the parties that the home sometimes holds. They know Edward as a person in his own right. There are also people who visit the house, particularly from Certitude, who come to see him for specific reasons. Lucy came to film us, with me talking about our parents and what life was like when Edward was a little boy. This was to show to new staff to help them understand his background.

I didn’t really have a relationship with Edward until he moved. I always followed my mother’s example and visited him regularly, took him out in the car and gave him some nice things to eat before he went back. But after moving, I stopped taking him out in the car as he goes out quite a lot anyway and I visit him at home instead. We watch television together or I throw balls which he bats about all over the place – usually at me! He laughs so much now! I have learned so much from the example of staff at Certitude about how to respond to him. We have review meetings to discuss how he is getting on and what to try next. We always start the meetings with ‘what do we like about Edward?’ which is such a positive opening.

We are no longer alone.

Good relationships mean a good quality of life. I can choose who I want to be with, but it is difficult for Edward to do that so it is even more important that the people he is with are sensitive to his situation and needs.

I used to find everything to do with Edward such a lonely experience. My mother was racked with guilt about him and there wasn’t really anyone in the rest of the family who was interested. It would have made such a difference to her if she had people like Jenny, Sara and Jamie (Certitude staff) to talk to. The family meetings we have are hugely helpful. I have met other siblings of people with learning disabilities now and I empathise with the parents who are getting elderly and worry just like my mother did. But, each of us is no longer alone now, and that is a tremendous comfort.”