Chat Pack How could your information be used to help you and other people in Leeds? 1 st -14 th February 2015
Thank you for taking part in the Joined Up Leeds big conversation. The things you talk about will help influence how the NHS and the council in Leeds use your information to help make Leeds a better, healthier place in the future. How? It s simple: 1. Get a few friends together for a 20-minute chat. 2. Use the instructions in this pack to guide your chat. 3. Make notes as you go and send the pack back to us. How to use this pack This booklet contains everything you need to guide you through your conversation about how your information could be used. There are four different stories about how healthcare information could be used and an activity sheet for you to record the things that you talk about. We would like you to pick one of the stories and to talk about how the information is used in the story, whether you would be happy to have your information shared in this way, and any concerns that you might have. Text that looks like this (the paragraph you re reading at the moment) gives you advice about running your chat. You don t need to read this out to your friends. We want you to do three things: 1. Get together a small group of people (up to about 5) and set aside about 20 minutes for your chat. This can take place any time between the 1st and the 14th February. 2. Use the instructions to guide your group. Read the instructions in speech bubbles to your group, show them the stories, and agree on the story you are going to talk about. 3. Talk through the questions on the activity sheet, and make some notes about what you decide. When you have finished return the chat pack to us. You may have a local organiser who will collect it from you and return it to us, or you can return it free of charge in the reply-paid envelope. Text that looks like this, inside a speech bubble, is what you need to read out to your group. It gives instructions of what you want them to do. If you have any questions or concerns you can contact us by phone on 0113 238 0157, or email on hello@ brainboxresearch.com We will summarise what people in Leeds think about sharing information in a report for the Leeds Health and Wellbeing Board, who will use it to guide their approach to information sharing in the city. Thanks for taking part! Dr Fiona Fylan Brainbox Research
How to run your chat It s easy, this is what you need to do. Read the instructions out to the group Pick which story you will talk about Start talking and fill in the activity sheet as you go Read the instructions out to your group Your information is shared by many different organisations in many different aspects of your life, often without you realising it. For example you can use your bank card in cash machines from lots of different banks, and if you telephone your bank they can access information about all the different accounts and loans you have with them. If you use apps on your phone they can access information in your phone and share it with other apps. The different organisations and departments that make up the NHS and council in Leeds hold a lot of information about us but at the moment they don t bring that information together in one place so that the people who look after our health and wellbeing don t get the full picture of who we are and how they can help us. Return this booklet to us The NHS and the council want to start making smarter use of information but they want the people of Leeds to help decide how their information is used. Who should be able to see information about us? What should it be used for? How will our privacy be protected? Your views will help decide how Leeds uses information in the future. There are four different example stories here and we re going to pick one of them then talk about two things: 1. What we liked about how the information was used in the story; 2. Whether we would be happy for our information to be used in this way. We need to pick one of them to talk about. Show the group the four stories Pick the story you are going to discuss. Tick the story on the activity sheet. Start the discussion and complete the activity sheet You only have about 20 minutes for this activity so you ll need to keep your group on the topic. Don t be nervous about telling people they have to move onto the next question. Once you ve discussed each point, fill in the boxes on the activity sheet to summarise what you discussed. These are the things we want you to talk about. 1. What do you like about how the information was used? Talk about: Who it was shared with; How it was shared; What it was used for. 2. Would you be happy for your information to be shared in this way? Talk about: How you might benefit; Whether any other professionals should be able to see your information; Any concerns you have. Then tick either the Yes or No box to show whether your group would be prepared to have your own information shared in this way. If you have any questions, concerns or comments you can contact Brainbox Research by emailing hello@brainboxresearch.com or by phoning 0113 238 0157 We also have a brief online survey about how the NHS and the council in Leeds should use your information. If you want to take part you can go to: http://tinyurl.com/joinedupleeds Thank you!
Stories Sheila s Story Sheila is 83 years old and lives alone. Her daughter Claire has been worried about her for a few years and would like her to move to a care home but Sheila doesn t want to. She has carers who visit every day and this gives her the help she needs to stay independent. I ve lived in this house for nearly 50 years and I m comfortable here. I know Claire worries about me but I want to stay here for as long as I can. Sheila had a system installed that monitors movement around her property and uses a lifeline unit that allows her to talk to a helpline operator 24/7 if she needs help. One night Sheila couldn t sleep so decided to go downstairs and make herself a hot drink, but tripped coming down the stairs and was lying unconscious in the hall. The operators at Tunstall Healthcare were alerted automatically that Sheila had left her room but was not moving around her house. They used the lifeline unit to call out Sheila s name to ask if she was ok. This roused her and she shouted that she had fallen and couldn t move. The operators called an ambulance, told them about Sheila s fall, her address and how they could get in without breaking down the door. They called Claire and told her what had happened. They were able to provide further personal details to the health professionals and they informed her GP and her care workers. Because people were alerted she got to hospital quickly and made a much better recovery. While Claire would still like her to move into a care home, she knows her Mum has an extra layer of safety to enable her to stay in her own home. Neil s story Neil is 42 years old and until recently lived with his wife and son. Within the last year Neil and his wife separated and his son, Matt, left home to go to University. Neil has multiple sclerosis and uses a wheelchair. Even though he is struggling to live alone, Neil tries to do most things himself. The council said I could have a carer to come to help every day but most of the time I can manage. I ve been bad with depression in the past and I think it s important that I stay positive and part of that is doing things for myself I don t want to rely on other people just yet. The council set Neil up with a Circle of Care a group of people who he can call on for help if he needs it. He uses a tablet (a mini computer) to go online and keep in touch with the people in his circle of care. People in Neil s circle include his community care worker, his mental health worker, the community meals service, and a contact from his local voluntary group. Neil doesn t have regular visits from these people but he lets them know how he is and can ask them to visit if he needs help. These people keep electronic notes on how Neil is doing, and everybody in the circle can see these notes. Neil has invited Matt to join the circle so that he can see who has been to visit, and can ask them questions. This is a big reassurance for Matt, who often worries that he should leave University and stay at home to care for his Dad.
Stories Sarah s story Sarah is 21 years old and has suffered from alcohol abuse and mental health issues for some time. She regularly sees her psychiatrist who has prescribed Lithium to help. At her most recent appointment her psychiatrist checked her Leeds Care Record, which allows doctors from different hospitals and GP practices in Leeds to see a patient s medical records. The psychiatrist could see that Sarah had gone to A&E twice after drinking a lot of alcohol and noticed that as well as having high levels of alcohol in her blood, Sarah also had Lithium poisoning. He prescribed a different medication for her. Thank goodness, my psychiatrist was able to see my hospital test results at my last appointment, because I m now taking a different medication which is suiting me better. Before the Leeds Care Record was available her psychiatrist wouldn t have been able to see the A&E test results during her appointment he could only have got them by phone or letter, which wouldn t have happened during the appointment, if at all. Because Sarah is no longer ill from the Lithium she had been taking, both her physical and her mental health have improved. Ali s story Ali is a happy, lively ten year old who loves football, and because he plays so often he usually has lots of bruises. One Saturday morning, though, Ali fell over while playing and knocked himself out for a couple of minutes. His arm was cut and bleeding and he couldn t move it. Ali s friends went to fetch his Dad, who took him to A&E. When they arrived at A&E the hospital staff said that Ali s arm was broken and so they would set and stitch it and give him some antibiotics to make sure it wouldn t get infected. They asked Ali s Dad about any allergies but he didn t know. It s my wife who takes care of all of the family. I just don t know if he s allergic to any medicines. I don t think so, but I don t know. The hospital checked Ali s GP records and found that he was allergic to the antibiotic they were going to give him, which would have made him ill. Instead they gave him a different one. The hospital doctor was worried about all of Ali s bruises and checked Ali s council records to make sure that there were no concerns about violence at home logged by social services. Once they were reassured that Ali was safe and well Ali s Dad took him home.
Activity Sheet Which story did you talk about? Sheila Neil Ali Sarah Would you be happy for your information to be shared in this way? Talk about: How you might benefit Whether any other professionals should be able to see your information Any concerns you have Use this space to note the main things you discussed What do you like about how the information was used? Talk about: Who it was shared with How it was shared What it was used for Use this space to note the main things you discussed Would your group be happy for your information to be shared in this way? Yes No
Activity Sheet A few questions about your group How many males are there in your group in each age band: <18 18-24 25-45 46-54 65-84 85+ How many females are there in your group in each age band: <18 18-24 25-45 46-54 65-84 85+ Are you? Work colleagues Students Friends Leisure group Community group Thank you! Don t forget to return the completed activity sheet to your local organiser, or to us directly: Email: hello@brainboxresearch.com Or post to: Fiona, Brainbox Research, 46 Town Street, Gildersome, Leeds LS27 7AA Please contact us if you require a large-print version of this document.