London Regional Forum. What was said at the meeting on the 9 th March 2017

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1 London Regional Forum What was said at the meeting on the 9 th March 2017 Reps from these boroughs came to the meeting: Barking and Dagenham Barnet Greenwich Hackney Islington Kingston Lewisham Southwark 24 reps came with 4 supporters. These Boroughs said sorry they could not be there: Bexley

2 Robert Maria Robert and Maria co chaired the meeting. 2

3 This was the agenda: 3

4 4

5 Learning Disability Mortality Review Elaine Ruddy from NHS England (London) introduced the Learning Disability Mortality Review. Elaine said that all deaths of people with a learning disability in London will be investigated. They want to find out what goes wrong for people with a learning disability and why some people die younger. They hope to learn for the future so that this stops happening. After Elaine spoke about the Learning Disability Mortality Review we worked in groups at the tables. The Questions were: 1. Have you heard about the Learning Disability Mortality Review? 2. How can we make sure that people with a learning disability know about the review? 3. What information do you want about the learning disability mortality review? 5

6 This is what people said: 1. Have you heard about the Learning Disability Mortality Review? Hackney Yes Islington No Kingston - we only heard about it on Tuesday Barnet have not heard anything about the review. I haven t heard of it, maybe I have, maybe not. I might have done. We have not heard about this before we would like to know more about this. No, we haven t heard until now, you should of done this earlier. 2. How can we make sure that people with a learning disability know about the review? Facebook, Twitter, posters and hospitals. You Tube. All radio stations. Speaking up group. Older people respite care homes. Met police all Boroughs. 6

7 Networking speaking to our members Speaking to service providers and organisations We have not got a partnership board in Barnet In Kingston there is a partnership board. A workshop. Planning meeting what the MP can do. Send out leaflets. Posters in Doctors, hospitals. Easy read leaflets. Could they come to our group and explain about the mortality review group? If there is no Regional and National Forum. Also, other advocacy groups (SUS have gone down) how the hell are we going to know about learning disability review. 7

8 3. What information do you want about the learning disability mortality review? Easy read leaflet. Posters. Library. College all schools in all Boroughs. Doctors. What a good and bad death looks like. Eg Good = healthy eating, exercise. Talk about health. Bad = eating unhealthy, lots of health problems. How can people with learning disabilities get involved? How can we get the information about review? Is the information in easy read People with learning disabilities are having their advocacy group s cut, so getting information can be difficult. Having an information mailing list support organisations. Who is involved.? What can we do? What can make it better? How does a Doctor know if you have a learning disability? We need lots of information like easy read leaflets and booklets about this. 8

9 How long has this Learning Disability Mortality Review being going on. Total of good and bad things happening and what could be better for people with a learning disability. Robert will take the feedback to the Learning Disability Mortality Review meeting. 9

10 National and Regional Forums future After lunch we talked about funding for the National and Regional Forums. Robert told everyone that the Department of Health has said that it will not fund the National and Regional Forums We asked people to vote. The question was: Do you want Robert and Maria to carry on as your rep and assistant rep for the next 6 months while we try to get funding for the forum? Everyone at the meeting voted Yes 10

11 We then worked in groups at the tables to think about why the forum is important. The questions were: 1. What work has the regional forum done that you are proud of? 2. What are the top 3 things that people with a learning disability in your region are worried about for the future? This is what people said: 1. What work has the regional forum that you are proud of? Giving people with learning disability a voice Transforming care and people outside of the borough Today s meeting about mortality review Keeping us informed We come to the meetings at Greenwich the forum to give our points across. Getting into groups and talking about hate crime, keeping safe, transport, jobs, NHS, Health and wellbeing, Housing, Day care and other (Plans for future) Working together. Glad to see each other again and glad to meet up in the future We have good ideas - we share information 11

12 2. What are the top 3 things that people with a learning disability in your region are worried about for the future? No regional forums and national forum, which goes to, the government to get our voice heard. How is government going to hear our voice if national forum is cut form 3 times 0 Losing funding for local advocacy groups Health health checks and easy read information Money benefit changes and cuts Keep London regional forum meeting going Housing better accommodation and more homes. Bring back day centres for people that need them. Support workers and support providers 12

13 People are asking for quality checks for their support workers Barnet people s choice did a health watch project to find out about what people with learning disabilities think about their support. Staff treating people like children. CQC rating supported living services as outstanding BUT! CQC are not speaking to speak up groups for other points of view. No choice and control: people not choosing bed times, when to go out, have meals. We are worried about the cuts in Barking and Dagenham We are worried about going to less meetings and are too shy to speak up at other people at the meetings. We are worried about our services in Barking and Dagenham like hospitals, police, transport. Less social clubs. Cuts in self advocacy groups like (Speak Up Southwark) That the work will stop How people with learning disabilities move around in the country, to schools to doctors etc. When it s really crowded when I need to go out, what the MP can do? 13

14 Learning Disability England Carrie Ann spoke about Learning Disability England. Carrie Ann said that the National Forum had spoken about working with Learning Disability England. Carrie Ann explained why this might be good and what the National Forum are worried about: Possible Good Things They talk to the Government We might be able to make them change? What we are worried about No easy read paperwork Meetings are not easy to understand 3 people with a learning disability and 10 professionals Are they an organisation for professionals? Will they listen to people with a learning disability? 14

15 Then we had a vote: Should we work with Learning Disability England? NO - 8 Yes - 6 Don t Know - 2 The vote was close but for now people at the London Regional Forum do not want to work with Learning Disability England. 15

16 Open Mic Burcak read out a letter from his MP Helen Mayors (East Dulwich and Norwood). She said she thought that it was wrong that the Department of Health had cut the funding for the National and Regional Forums. Hackney said that Hackney museum are doing a project about people with a learning disability. Video Booth Some people spoke in a video booth. Here are the links to the films: password BurcakY password RichardW password MarkB 16

17 Next Meetings: - Thursday 8 th June 2017, 1 3 pm Thursday 14 th September 2017, 1 3 pm Thursday 14 th December 2017, 1 3 pm Thursday 8 th March 2018, 1 3 pm 17

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