Next week CHANGE Board member Joanne and Sarah Marsay from NHS England are heading to Japan. Here they write a guest blog to tell us what it’s all about:
Hi, we are Joanne Kennedy and Sarah Marsay and we are going to Japan together!
Joanne, “I am a person with a learning disability and I live independently. I am on the Board of CHANGE.” Sarah, “I am part of the public voice team at NHS England. We want people to get involved in NHS decisions. We are developing a new ‘accessible information standard.”
We are going to Japan as part of the ‘Young Core Leaders of Civil Society Groups Development Programme.’ The programme includes people from different countries, and our trip will include people from Denmark and Germany, as well as Japan and the UK.
We fly to Tokyo on 23rd February – not long now!
We are really excited but also a bit nervous. We have not been to Japan before. Joanne has not been on an aeroplane before. Plus we have not co-worked together before! So the trip will mean us both doing lots of things for the first time.
Joanne, “I am really excited to be going to Japan. I am counting down the days! It is also a bit scary as it is the first time I have been on a trip like this.”
Sarah, “Although I have been abroad before, I have never been on a trip like this. I think I would have been too nervous to apply on my own, so it is Joanne’s enthusiasm and belief which has got us both to Japan!”
In Japan, we will learn about how the voluntary sector works in different countries, and share our own experiences. We hope to increase our skills and learn new ideas which we can use when we get back to England. We are especially interested in involving and empowering people with disabilities, and in accessible information.
Joanne, “I want to know if people with learning disabilities are on the Boards of charities in different countries. I want to know how people with learning disabilities are involved in decisions which affect them.”
Sarah, “I want to see how voluntary organisations and government bodies in other countries involve people in decision-making and how they approach accessible information. Do they have different ideas and ways of working?”
We also hope to show people about co-working, although we have only just started co-working together for this trip. We think it might be the first time anyone has gone to Japan on a trip like this as co-workers.
Sarah, “When I’ve told people about going to Japan with Joanne, who has a learning disability, some people thought I was going as Joanne’s carer – which I’m not! We are going as co-workers, and as colleagues. I think there is lots of awareness-raising to do about co-working and what it means to work in this way. We want to show people about co-working, about working on an equal basis and recognising that everyone has different skills and experiences.”
Our first experience of co-working together was when we went to a meeting in London about our trip to Japan.
Joanne, “I was really surprised that I was the only person with a disability at the meeting. Even though part of the reason for the trip is focusing on people with disabilities, I was the only person with a disability. This didn’t make sense to me.”
Sarah, “Joanne’s reaction to being the only person with a disability at the meeting really made me think. We won’t know until we get to Japan, but Joanne might be the only person with a learning disability, or with any disability, on this trip. This was my first experience of co-working and I had already found a new insight, and was already feeling challenged!”
We are really looking forward to seeing a new country and experiencing Japanese culture. We are also wanting to learn about how charities work in different countries, and especially about how people with disabilities are involved and if they are part of decision-making.
We are also excited to learn about accessible information in Japan, and from the participants from Germany and Denmark. Do the Government and voluntary organisations make their information in easy read? We want to tell people about the ‘accessible information standard’ which NHS England is developing, and about how CHANGE makes information in easy read.
We also want to explain how in the UK the NHS works with voluntary organisations to improve people’s health and to empower people to make choices about their health and care. We want to know if this is different in the other countries or not, and see if we can learn from how they work too.
We will be sharing updates on our trip and our experiences on Twitter. You can follow Joanne @joanne64886790 and Sarah @SarahMarsay or search for #jsjapan2015
You can find out more information about CHANGE at http://www.changepeople.org/