Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group Facilitators PJ Daly Liza Kelly Service User Reference Group:  Patricia Shiels John Walsh Kevin Bellingham Sean Ryan Pat Buckley Ester Fewer Mary Kissane

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group Hi My name is Patricia. I am here to represent people with intellectual disability. I am going to tell you some important things that we heard today. First - Minister O Malley said some really important things

MINISTER O MALLEY We were delighted to hear that people with intellectual disability should be treated the same as everyone else. He said all services need to change. People should not have to fit into services. Services need to suit each person. Money needs to be spent on things that are important for people with intellectual disability. For example more accessible transport,education,support,housing in the community.

Minister O Malley We want action rather than words. We want to know is there anybody with an intellectual disability on the Implementation Group?

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group Kevin Bellingham I would like to speak about medication. I am focusing on Ruths story. The main issue is the way she was treated. We hope the new Mental Health Act will stop this happening again.

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group Hello, my name is Sean Ryan from Cope Foundation. Important to remember that everybody that has an intellectual disability does not have a Mental Health problem. Just because we loose the head sometimes does not mean we have challenging behaviour.

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group Sometimes we loose the head because of , where we live what we do during the day because people don’t listen listen to what we really need we get very frustrated because we are not listened a lot of decisions are made for us

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group The most important qualification a staff can have is communication skills. We are not happy having all these labels We are not happy with all these labels being put in the one box, for example intellectual disability, mental health problems, behavioural problems.

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group Hi my name is Mary, I am here to help to talk to people. This morning we found it hard to hear and to follow the speaker. We could not understand what was going on. We can not comment on the first presentation. We heard a lot about hospitals.

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group We think that is very important that people have their own rooms the place should be comfortable. We want peace when we are getting treatment. We don’t want to wait for treatment. If I had a heart attack I would be taken to hospital straight away. It upsets people in our home and in the day centre when people are unwell.

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group These treatment places should be near by. We think it should be near a hospital. The treatment could make you worse, the side effects can be bad. If the place is not nice you could get worse. It is frightening to go to a place where there are loads of people with different problems. This place should have special rooms for someone to be safe.

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group We want to be treated as a person. We want things to be explained to us. We want someone to talk to for support. Someone who can complain for us, who could make the place better. This person could be a staff, a friend, a parent or another service user. We don’t want the support person to sign us in.

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group What happens when my treatment stops? When is it time to leave? Maybe we shouldn’t have to go back to the hospital, maybe we could go to a community centre for follow up treatment like counselling or a chat.

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group We would love if somebody would see the signs and ask if everything is ok, before things build up or blow up. We would like to see the same doctor all the time.

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group There are too many HSE divisions and service divisions. Service users find it very confusing, its hard to contact the right person. The is a lot of different types of staff, its like a merry go round. The staff have a union the service users have nothing. What do we do if we have a problem?

Feedback from Service User Reference Group Meeting the Challenge of building a Person Centred Mental Health Service for People with Intellectual Disabilities Feedback from Service User Reference Group Why cant we have one body that understands what people with intellectual disability need? There a lot of staff that want to do a lot more for us but they are up against a wall.