LeDeR newsletter. May Included inside. New video animation p2. Meet our new staff p6. Learning and sharing events p8 and 9

Transcription

1 LeDeR newsletter May 2018 Included inside New video animation p2 Meet our new staff p6 Learning and sharing events p8 and 9

2 Welcome to the latest edition of the LeDeR newsletter. Here you will find information about what we have been doing on the Learning Disabilities Death Review programme over the last 6 months. 1. What we have been doing Since the end of last year, everywhere in England has been checking up on deaths of people with learning disabilities. There are now 40 steering groups across the country looking at this, so all areas of England are covered. Steering groups help guide the set up of the programme in local areas. Anyone can tell us about the death of someone with learning disabilities, anywhere in England. Please contact us on

3 Chapter 2: Annual Report We published the LeDeR Annual Report on the 4 th May The report tells you what we did and what progress we made in The full report and easy read version are both on our website at If you would like a printed copy, please contact our Bristol office with your address and we will send it to you. There is also a video animation version on our YouTube channel: Click here or follow the link on our website. 2 3

4 Chapter 3: Update from NHS England NHS England have read the annual report and have said that they agree with the recommendations. They said they will support the LeDeR programme to help improve the health of people with learning disabilities. They are also looking at illnesses such as sepsis, pneumonia and epilepsy as these are very common causes of death. They said: We acknowledge and accept the recommendations in the recently published report We are also investing a further 1.4 million pounds this year in LeDeR. Chapter 4: Extension of LeDeR programme We are pleased to tell you that the LeDeR programme team in Bristol has been extended to the end of May

5 Chapter 5: Extra checks on some deaths. The LeDeR programme does some extra checks on some deaths. We call this Priority Themed Reviews. We do extra checks on: deaths of people aged 18 to 24 years and people from a Black or Minority Ethnic group. 2 groups do extra checks. One group is of people with learning disabilities. The other group is of professionals and family members. They have given us some extra ideas to improve care. Some examples are: Needing extra support in school, Working together with carers when there are disagreements about someone s care, How to make health and care services better for people from Black and Minority Ethnic groups. We would like to thank both groups for all their help. 4 5

6 Chapter 6: General Data Protection Regulations (GDPR) There is a new law about keeping and using your personal information. The new General Data Protection Regulations came into force on the 25 th May Because of this, we need your agreement to keep sending you newsletters and other information. Please make sure that you reply to our s so we can keep in touch. Chapter 7: Dying Matters Awareness week We have worked with families to make a short film for Dying Matters Awareness week. It shows how important it is for people with learning disabilities to have a good death. You can watch it here or from the YouTube link on our website. 5 6

7 Chapter 8: Welcome to new staff Ali We have been joined by new staff in the LeDeR programme. They are: Alison Burnett (office administrator), Avon Avon Huxor (research associate), and Chris Allen (communications coordinator). Nick We also welcome Kamila Gielnik and Nicholas Cook who help with analysing the reviews. Chapter 9: Working with support providers (Social Care) LeDeR has been working with a group called VODG (Voluntary Organisation of Disability Groups). They are helping us to tell the main support providers about what LeDeR does. We have written a new leaflet for support providers which is available on our website, or if you would like a copy please contact us. 6 7

8 Chapter 10: Useful Fliers and information on involving people with learning disabilities We have fliers available to explain what to do to tell us about a death. We have them in postcard size and credit card size. You can order them by sending your address and size you would like to us at lederteam@bristol.ac.uk There is also a leaflet about involving people with learning disabilities in reviews on our website. You can find it here riefing_involving_people_with_ld_in_l eder_reviews.pdf Chapter 11: Update day in May 7 We had our 2 nd LAC update day in Birmingham in May. LAC stands for Local Area Coordinator. They organise who checks up on deaths; and they make sure the reports are good quality. Thank you to everyone who attended, your input helps us to create a good system from which everyone can benefit. 8

9 Chapter 12: Clinical Champions update We have 4 clinical champions who work with the LeDeR programme in different parts of the country. They raise awareness of our work with the local health services. They are: Lakshmi Ramasubramanian in the North West, Nigget Saleem in Cumbria and the North East, Nicola Payne in London, Guy Bradley-Smith in the South West. We welcome all of them. Chapter 13: Midlands and East - Learning and Sharing Events In April there were 3 Learning and Sharing events in the Midlands and East region. Over 150 people came, including families and people with learning disabilities, as well as health and social services. They talked about the findings of the LeDeR programme so far and what can be done to make things better. More local groups are being set up to talk about how to reduce early deaths of people with learning disabilities. 8 9

10 Chapter 14: North - Learning and Sharing events The LeDeR programme in the North has also run sharing and learning events for their region. Some of the things they have agreed to do include: Better use of the Mental Capacity Act. This is a law about when someone can make their own decisions. Increasing the number of people who go for annual health checks. Making sure doctors and nurses know how to do good quality annual health checks. Increasing the number of people who get checked for cancer. Awareness training for doctors and others who work in health services in the community. Increasing awareness of health and wellbeing for people with learning disabilities. The regional Coordinator will make sure all of the areas link up to share plans and good practice. Maria Regional coordinator for North region: maria.foster2@nhs.net 9

11 Letting us know about the death of someone with learning disabilities Anyone can contact us, either online: /leder/notification-system/ or by phone: Our contact details: LeDeR Programme University of Bristol Norah Fry Centre for Disability Studies 8 Priory Road Bristol BS8 1TZ Tel: LeDeR-team@bristol.ac.uk Website: