People First England

Notes

14th

May 2014

11.00am – 3.00pm

What this is about

Local groups and leaders meeting together

and with People First England

Gavin Harding welcomed everyone. He said Inclusion North are hosting this event so self advocacy groups have a chance to find out about People First England and think about how they work together in the north if they want to. Gary Bourlet was at the meeting from People First England and Kaliya Franklin joined us on Skype from Liverpool.

What People First England is working on

Gary and Kaliya told us about People First England. Why it has started and what they are working on first. Gary has been working with People First since 1984, but there has never been a People First England. We believe that the more disabled people can speak together, the louder our voice will be. To be sure this is the real voice of disabled people we believe people should be able to speak out about issues that matter to us, not campaigns the big charities choose for us. Our first priority is to support self advocates to attend Conservative and Labour party conferences. This is a really important chance to speak to politicians directly. We held a competition so anyone could enter and apply for a place. We will be announcing the winners very soon.

Questions and Worries from everyone We worked in groups to think about the questions people have or things they are worried about. Then we shared the questions and Kaliya & Gary answered the ones they could from People First England’s point of view.

1. How is People First England funded?

Answer: To start People First England we decided we would need £50,000 for the first year. £50,000 can pay for self advocates to attend party political conferences, for media training for self advocates and salaries for two part time workers. So far all our funding has come from charities or individuals.

2. We are worried a national group will mean less

funding for local groups. Lots of local groups are losing money.

Will People First England compete with local groups for funding?

Answer: No. Local groups get their money from local authorities for supporting advocacy. People First England won’t be applying for that same money

3. We are worried People First England might take

good ideas or work from local groups. How will you work not to do that?

Answer: People First England wants to help local groups get more attention for their great ideas, not take those ideas away. We will try to help local groups and self advocates to get the skills to campaign and speak out more for themselves, not be ‘spoken for’ like the big charities do.

4. We feel like lots of the good work from when we had Valuing People has been lost.

Will a new government bring Valuing People or something like that back?

Answer: We don’t know. But we do know that this government have cut lots of the good projects which supported disabled people. We also know that whoever wins the next election there will be more cuts. This is why we think it’s so important to make sure the voice of people with learning disabilities is heard.

5. We think not enough people know about

politics, voting and elections.

How can People First England help with easy read information or people knowing about voting or policies of parties?

Answer: We agree! After the meeting we had in May we worked with Inclusion North to put together an easy read guide to all the voting information we could find. We knew that lots of charities and groups had really good voting projects but that they only tell people about their own work. We think disabled people should be able to know about and use ALL projects not just those a big charity tells us about. We all hope this will make it easier for local groups to use the projects that the big charities are already putting on for free.

6. How is People First England set up and managed?

Answer: At the moment Gary and I are working to set up People First England. We will be a charity by September 2015. We set up People First England a year before the general election. We decided that it would be better to try and ensure the voice of people with learning disabilities is as loud as we can all make it in that election. There are only 2 of us working part time and we’re both disabled so we can’t do everything we would like to as quickly as we would like. If we become a charity now we will have to put most of our time and energy into that and not getting things done in time for the election next year. So we decided it would be best to wait until there is time to ask People First groups how they think People First England should be set up and managed. We will start to do that after the election in May 2015.

7. Can local groups join People First England if

they want to?

Answer: Yes! The more of us joining together the better!

8. How does People First England fit with the National and regional forums?

Answer: Dr Simon Duffy is helping People First England to talk to the forums and find a way for People First England to fit there that everyone is happy about.

9. Do you have a website?

Answer: Our website is still being built. But we have a blog where you can find out a bit about us while we’re waiting for the website to be ready http://peoplefirstengland.blogspot.co.uk/

10. How can people get in touch with you and find

out more?

Answer: We are on Facebook – the group is called ‘People First The Movement’ – there are more than 3000 members already. https://www.facebook.com/People1stEngland We are on twitter as @People1stEng or you can email us at Kaliya.franklin@peoplefirstengland.org.uk or Gary.Bourlet@peoplefirstengland.org.uk

11. We think people should think about the words

they use – like learning impairment not Learning Disability. What do you think?

Answer: We think so too – disabled people use lots of different words to describe themselves. We will try to use the describing words that most disabled people are happy with.

12. We think that when the media want a statement

about people with learning disabilities they should ask groups like us not Mencap. How can we make that happen and not lose our local voice?

Answer: This is why we set up People First England and exactly what we’re trying to do! We will be running media training for self advocates and supporting them to talk to the media themselves, not through a big charity like Mencap.

13. The training package for campaigning – what

does it include? How will it be delivered? Is it accessible? How do you know?

Answer: We are still working this out at the moment.

14. We are worried about housing, travel and day

centres closing. Commissioners do not seem to be worried about the same things. How can we get them to understand what is important to us?

Answer: Commissioners don’t often speak to the disabled people they commission services for. Writing to your local commissioner and asking them to visit your group to talk these worries through is a good place to start.

15. How will you keep in touch with us and tell us

what is going on?

Answer: Once our website is ready it will be a lot easier for everyone to see what we are doing! Until then we will update people when we have news, eg announcing the winners of the competition to attend Labour and Conservative party conferences later this year.

The Justice for LB campaign

Sam told everyone about the Justice for LB campaign.

Connor Sparrowhawk was a fit and healthy young

man, who loved buses, London, Eddie Stobart and

speaking his mind. Known as LB online, short for

Laughing Boy, he also happened to have autism and

epilepsy.

On the 19 March 2013, he was admitted to Slade

House Assessment and Treatment Unit run by a NHS

Trust.

Tragically, after 107days in the unit, he drowned in the

bath on 4 July 2013.

An independent review found his death was

preventable – it did not need to happen.

A year later the 107days campaign wants to inspire,

bring together and share positive actions being taken

to support JusticeforLB and all the people with

learning disabilities or autism.

The campaign wants to help change how people are

treated and thought about.

You can read about LB and what happened to him at

http://mydaftlife.wordpress.com/the-report/

On that page there is information on the review into

why Connor died, what people have said or done

since.

There is Easy Read as well as non Easy Read

information.

You can find out about all the different things that

have happened for the 107 days Justice for LB at

http://107daysofaction.wordpress.com/

Inclusion North on 14

th May had a day of sharing good

ways of working, stories and ideas from people with learning disabilities, family members and workers You can see them all here: http://bit.ly/1pIbeIg

What are your ideas around what you will do locally after today?

North Yorkshire

- Tell people about this meeting at the Partnership in North Yorkshire and local area groups.

- Tell partnership about LB Campaign - Build networks with local press - Give feedback to your groups

- Concentrate on social media - Training opportunities - Network further with other/local groups - Develop sessions around voting and rights

- Building relationships with MPs etc - More self-advocacy

Doncaster/Stockton

- Picked up info/networking - Report back to CHAD - Link with other groups – share contacts

- Share information - Take information to LDPB and commissioning

team - Using internet/social training networking - Talk about both at our Board meeting and

other groups we go to - Report to Valuing People Board about different

ways of working

- #107 days – raise awareness on saying it all website

- Run awareness training about voting

Darlington and Scunthorpe

- Talk to others about today - Take our ideas to Partnership Board or

Parliament - Visit Inclusion North Website

- Explore Skype possibilities - Take ideas - Go back and talk to Sunderland People First

about everything today

- Make links and send stuff to our regional neighbours

- Share the easy read of Connor’s story with others eg patient forum

- Take it to the Winterbourne View Projects Group

- We will keep persevering - Keep our voices being heard

- We will raise our profile with media - We will keep our training work going - We will keep being realistic - We will not set unrealistic goals and say within

our abilities

Rotherham

- Local Partnership Board - Regional Forums - People’s Parliament - National Forum

- Speak Up Committee

Middlesbrough

- E-mail other people first groups to ask for their experiences re transport

- Meeting with local MP Tom Blenkinsop - Invite other politicians to Middlesbrough First

- Encourage Disabled/LD/ people to get on board

- Feedback the information - More joint working on same ideas

- Sharing stories for IB 107 days - Join all People First networks - Social media (using more training) - Let group members know what we’ve found

out – ask them what they think of the idea – do they have any questions

- Get training on how to use social; media – how can you use it to influence and get media attention. How can you use it to campaign.

Gateshead

- Talk to someone in the prison service about the idea of a liaison officer to work with people with learning disabilities in prison.

- Newcastle

- Find out what’s happening in Newcastle with the digital inclusion work that was started – working with care providers to support people to go online.

What might Inclusion North do after today?

Keep in touch with us and People First England and keep us updated with a separate newsletter

Speak to people locally (through regional PBs)

Info about training/training providers

#107 days remind people it’s not just about hospitals people get sent to live a long way from home in specialist private units that are not hospitals

Feedback different ways of working with self advocates to Partnership Boards and getting info out beyond groups

Share contact details and help us promote ourselves and network

Raise awareness and strengthen us and them

Host another day in 6 months time to talk about development of People First England and give feedback about justice for LB work

Let people with learning difficulties take the lead and work together with support

Keep us up to date

Send information to everyone

Help us to get accessible information about voting and help us to make voting/politics exciting so we can encourage people who think voting is not for them to vote!

What messages do you want to send to People First England?

Tell me how I can get training in campaigning

People First England to write a newsletter and get Inclusion North to circulate it

Di Lofthouse MBE happy to help

Training opportunities

Newsletter – national success

Campaigning/promote local/national to media

More networking events

Develop a programme regarding vote, rights (develop a training DVD

Accessible formats, support umbrella

Gather info about worries/concerns to make sure it’s representative – for everyone

Put together key themes/issues for people to feed into

Keep people up to date through e-mail/phone about the work you’re doing/membership

Make things better – Teamwork!

Think about training and standards for good self advocacy groups

Meet again

Help raise awareness of voting

Use social media and press to tell others (through easy read)

Make sure we all understand the values and how People First work

Keep in touch with everyone

Update on progress

More information about Party Conference Role

Send everyone links to blog and website when up

and running

Send us information about what other people around the country think

Signpost to funding opportunities including working in partnership

Get Trustees for this organisation

Get in contact with people in different areas with learning difficulties

Our understanding of a People First is that it is for and run by people with learning difficulties and not for wider groups – that is when we lose our voice

Spread the word to everyone more

Don’t give up on the work – keep going until it is happening for people all over

Join

Decide which other groups to work together

Spread the work to everyone more

We can’t find you on the internet need Facebook page

Need to come up on a google search

Provide a list of all sub groups so we can work together on the same things and ask each other questions (chat rooms, forums) we are working on ……. Can anybody help – linking together?

Next steps

1. Inclusion North will do the notes from today with

the links to more information

2. We will share the contact details of all the groups

who came today with each other and People first

England

3. People First England and Inclusion North will make

a guide to all the different resources on voting and

easy read information on elections

4. Inclusion North will keep in touch about working

more with self advocacy groups

What People had to Say about the meeting

Meet private groups

Meet new people

Had a great day, very accessible – great to meet other groups, well organised, thank you

Great that self-advocates dominated the day

Got some good ideas from other groups

Meeting new people and having my first experience of skype – good practice for party political interviews conference

Meeting new people and learning about new places

It has been very good to meet and share info with them

Meeting new people and working together

Good meeting other organisations and finding out

what they do

Networking and meeting new people

Needed to be led by people with learning disabilities

Good to get everyone together

Liked the groupwork

Cup of tea and a chat

Found the article very interesting

Asking questions

Interesting

Good networking opportunity

Travelling was very good getting here

Good dinner

Like meeting new people

Finding out more

Everything – networking with people from other counties

Looks promising

Haven’t got lot of plans at the moment – have a meeting later

Found the food very nice

A fantastic event – thank you

Found the person on Skype very good

I like the food and meeting new people

Like meeting new groups about People First England

Great day – must keep momentum up. People First England please get facebook account so we can share

Lunch

I have really enjoyed it and it has been very good

It was really interesting - easy to understand

Seeing familiar faces and chatting to them

Chance to meet new people

Information is very accessible

Buffet very nice

Learning new things

Still a bit confused about People First England are doing

Car parking

A bit stuffy

More people here

Better if there been a break

Try to sort sound

Who came to the meeting?

Cathy Wintersgill Leeds Connect in the North Peter Lomas Leeds Connect in the North Daniel Froment Leeds Connect in the North Glenn Howe Newcastle – Better Day Billy Richardson Newcastle – Better Days Lisa Clark Sunderland People first Sharon Bell Sunderland People First D Binkinsop Sunderland People First Belinda Croce North Yorkshire Tom Newton North Yorkshire Di Lofthouse MBE North Yorkshire Gary Bourlet People First England Becca Cooper York People First Andy Pollin York People First Kate Hardcastle York People First Kim Whiting York People First Sandra Gilpin York People First Lynne Morrison Middlesbrough People First Emma Londesbo Middlesbrough People First Peter Downey Middlesbrough People First Chris Williamson Middlesbrough People First Karen Amos Bradford People First Tommy Redgrift

Gillian Carlin Bradford People First Louise Darling ChAD Kay Dickson ChAD Pat Chojnowski ChAD Jackie Crawshaw ChAD Derek Cartwright Talking Lincs Self Advocacy

Network

Steve Martin Talking Lincs Self Advocacy Network

Karen Rothwell Talking Lincs Self Advocacy Network

Kate Wadey Talking Lincs Self Advocacy Network

Alex Tate Your Voice Counts Gateshead Paul Regan Gateshead People Chair Christine Bucklet NE Lincs Valuing People Board Gary Stark NE Lincs Valuing People Board Andrew Murdoch Trevor George Yasmin Johnson Stockton Helps All Andrew Minster Stockton Borough Council Robin Flintoff Stockton Borough Council Keith Cookson Luke Hardwick Darlington AD Harrry Langhorn Darlington AD Nick Darlington AD Dave Burns Jake Joan Robb Stockton David Donnelly Stockton Angela Ellis Winterbourne JIP Lucy Virgo Inclusion North Scott Cunningham Inclusion North Samantha Clark Inclusion North Marie Shrewsbury Inclusion North ST & WAK Moyn Sarah Roberts Kirklees Involvement Network Nicola Cromack Kirklees Involvement Network Marsha Simpson Kirklees Involvement Network Virginia Saynor Change Gavin Harding Voices for People / Inclusion

North

Heather Carter MP-DCC Shaun Lavery York PF Michael Scott Laura Simmons

Apologies Sara Cole Selby Dawn Conway Redcar & Cleveland Karen Graham Vivienne Trenchard Skills for People