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1 Leeds Learning Disability Friday 24 th February 2017 Minutes of a meeting Friday 24 th February 2017 Things we talked about in the meeting on 24 th February 2017 People who went to the last meeting: Norman Campbell (Co-Chair) Ian Buttery (Co-Chair) Lynn Bailey (Better Action For Families) Liz Davis (Family Carers) John Burley, Terry Simpson, Linda Witham, Rachel Smith, Anna Brier (Your Health Matters) Chris Charlton (LEEP 1) Ann Shutter Tanya (Get me better champion) Sarah Stewart Rachel (Student occupational therapist) Claire Nixon Sadie Dunne 1
2 Apologies: These people said they could not come to the last meeting Kath Linley Mark and Vicky (The Bridge) Sam Browning (GP Lead for Learning Disabilities) Don O Connor (Aspire) Last meeting minutes Last meeting minutes were agreed as a true record. Welcome We all introduced ourselves to everyone in the group. 2
3 The last Health Task group was in October. In December there was a meeting that talked about the My Health app. The January Health Task Group meeting was cancelled.
4 Partnership board meeting The last partnership board was on Tuesday 8 th December 2015 at the Thackray museum. Norman said the theme for the Partnership board this year is being well. He suggested we need to find out what information is accessible and what do people need to know about. We need to make information better. There is information available but not everyone knows about it and we need to check if it is up to date. 4
5 What we will do this year - planning Norman suggested that we focus on different areas such as - Health checks Does everyone get offered a health check? Health screening for cancer Mammograms Cervical screening Testicular Cancer 5
6 Training Doctors and practices are not being trained about Learning Disabilities. We want to find out why and what has happened. Dentists How to make information better. Hospitals What are people s experiences of hospitals?
7 Claire and Lynn said that they will ask people about their experiences of dentists, hospitals and doctors. 28 th Claire said the questions will be asked at the next people s parliament on the 28 th February. Lynn said she will ask people about their experiences at the carers reference group.
8 Lynn said that at the last meeting everyone had spoken about inviting a dentist to the meeting. Everyone agreed this is a good idea. Norman said he would look at inviting a dentist to come to the Health Task Group meeting. Lynn said she thinks that there needs to be easy read information about dentists to help people.
9 Sadie said that she had met with Dr Bi who has done lots of work with learning disabilities. She said Dr Bi is going to be creating easy read information about dentists. Norman suggested that we invite Dr Bi to a Health Task Group meeting. Sadie said that on Friday afternoons the Leeds Dental Institute let you go visit. They show you around so you know what to expect when you visit the dentist.
10 Norman said he met with Dr Browning and she said there had not been any learning disability training for doctors and surgeries for the past year. Norman talked about using a survey monkey to find out more about what doctors and surgeries know about learning disabilities and learning disability services.
11 Sadie said that they do inpatient surveys in May and November. The survey asks people questions. 60% of people fill in the survey. The Get Me Better champions meet every 2 months. They find out if there is anything they can help with. The A to A have a regional meeting. The feedback is that Leeds are very good at flagging patients and knowing when they are coming in and how best to support them.
12 Sadie said in the last few months the Hospital has had some really good feedback. A lot of work has been done with Ophthalmology. Sarah said that a year ago Ophthalmology service wasn t very good but there have been big improvements. Liz shared a positive hospital story. Her son went for an operation and a nurse stayed overnight looking after her son so Liz could go home and get some rest. Liz said she thought this was fantastic.
13 Norman said the Annual Health Assessments have not been done in 2 years. Norman said the Partnership board need to hear about things we can do better and things that are going well.
14 Sadie and Norman spoke about the mortality review. The death of people with a learning disability should be reported. One thing that has come out is about capacity and consent around DNR. DNR means Do Not Resuscitate.
15 Across the country there is not very good practice about telling people about the do not resuscitate form and what it means. Claire said work with advocacy needs to be done. Sadie said that the do not resuscitate form has been added to the Hospital Passports.
16 John said that the palliative care workshops are twice a year. An easy read end of life care plan has been made. You are meant to fill it in when you are well before you become ill. All the easy read end of life care is now on the Your Health Matters website. 14 th Norman said that everyone should be reminded of the Your Health Matters website. It was suggested that the website should be shown at the Partnership board on the 14 th March.
17 Health care records and my health app Health care records were talked about in the last few meetings. In December there was a meeting about the My Health App. Everyone at the meeting had a go at using the app. It got good feedback and everyone said the app works well.
18 The My Health App was launched in Hull. They did a trial with 200 people. The trial lasted 6 months and it was very successful. They want to do something similar in Leeds. If you have a tablet or a computer you can sign up and use the My Health App for a free months trial. After the first month it is 1 a month.
19 John thought that we could have a sudo trial which means a pretend trial. It will not be official but it will be a way to see if the app works and what everyone thinks of it. The company that made the app is called Maldaba. Maldaba do training if everyone signs up to the app. They want to create an easy read guide to the My Health App. They will put it on their website.
20 John suggested we do the pretend sudo trial in April. John has made a flyer to advertise the app. He said we need to think of questions we need to ask everyone about the app so we can get feedback. Maldaba are looking at technology so the app can be used on your mobile phone.
21 Making Time Pharmacy Sadly Nigel who was involved in the Making Time Pharmacy passed away in January this year. The Making Time Pharmacy project ends in June. Sadie said a pharmacist called Sally from Leeds Teaching Hospitals is interested in the project. Sally would like to train the Leeds Teaching Hospitals about the Making Time Pharmacy project.
22 Date of next meeting Friday 5 th May 2017 Leeds Civic Hall, LS1 1UR 11am- 12:30pm Images courtesy of
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