North West Self-Advocates Conference

BLACKPOOL 2014

We have just had 3 fantastic days at the 2014 North West Self

Advocates’ Conference at the Blackpool Hilton. It was the biggest

conference yet, and is the biggest of its kind in the country. Karen

and Clare went with 3 delegates for the full conference, and 7 day

delegates from SUSOParachute came on Wednesday.

It was lots of work, very interesting and lots of fun.

Day 1 Forum Reps

Our North West Reps are - Mark Shackleton and Lisa Frith who represent us on the

National Forum. They go to 6 National Forum meetings a year and discuss issues like

Universal Benefits, Housing, Hate and Mate Crime.

They let the National Forum know about what is happening in the North West and what

we want the government to work on for people with learning disabilities.

Review of N W Groups and Services 2013

Colin Elliot who works for the NWTDT and Pathways did a review last year and

spoke to self advocacy groups, sub groups, Partnership Boards, and family and

carer groups. One problem was that at there are many meetings that self-

advocates go to and find not many professionals turn up.

Self- advocates and families want to be involved in decisions about services and

spending, professionals say they want this too. There need to be more local

meetings, but with everybody turning up, better information sharing from

professionals and from self-advocates and families too, so professionals are

clear about what is wanted and needed.

The NWTDT is working with Directors of Adult Social Care and other professionals in the North

West to try to help to make this happen.

Changes to the NorthWest Forum

Lynn James-Jenkinson told us about how things are now.

Self Advocates \

Families --- meet 4 times a year

Lead Officers /

The Valuing People Now Group is now called the Reference Group

The Finance Group is now called the Board

And there are 3 sub-groups:

Being Safe Being Healthy Living Well

Self-Assessment Framework We did a thumbs up thumbs down of what was working well in our areas

around arts and culture, transport, sports and leisure. We had to rate our

local authorities red, amber or green depending how well we thought they

were doing and they will be compared to the ratings the local authoriries gave

themselves.

Workshops Karen and Sarah did – ‘Who’s the Boss – taking control’ which was all about what we can

do to take control.

Clare, Richard and Philip did – ‘Turning Plans Into Action – making things happen’ - both

very positive!!

Day Two We were joined by 7 more dropper-inners – Sara,

Noor, Robert, Darren, Jane, Helen and Donna and our

volunteers Jennie and Andy who gave their time to

come along and support them for the day, which was

just brilliant.

Everybody arrived just in time to join in with the

dancing with the Fylde Jazz group ………………….

Are Self-Advocates Included In The Big Society?’ The first issue of the day was. This was delivered by Dr Laurence Clark

and Katherine Runswick-Cole of Manchester Metropolitan University who

are working on a project called ‘The Big Society - Disabled People with

Learning disabilities and the Civil Society’.

They are working with organisations like Mencap and Northumbria and

Bristol University pathways. The Big Society means voluntary

organisations helping to deliver different services.

Some people thought it was just another name for funding cuts, and we heard

that a lot of people with learning disabilities are becoming more lonely,

because there are fewer places to meet as services closing.

Our tables each wrote a message to the government.

Table 1: Table 2:

Government should make Help more disabled people

life easier for people day Centres are a lifeline

with learning disabilities People want more independent

our life is hard enough! lives

Stop hate crime.

Morning Workshops

There were 8 workshops to choose from to help well-being:

Confidence Building – Richard and Helen

Zumba – Noor, Donna, Darren, Sarah

Staying Healthy Mind and Body –Jane and Philip

5 ways to well-being - Robert

What is a stroke – Sara

Lunch was delicious!

Quality Checkers – Is It Getting Better?

Dene Donalds of Pathways told us in Lancashire people have chosen their

‘Welcome Values’ – Choice, Being Loved, Having Friends, Staying Healthy and

Being Safe.

Things they find most important and people think they are the best way to

show quality is improving in services.

Everyone agreed that providers needed to work MUCH harder to help people

have real friendships, not just people who are paid to be their PAs.

We heard that many delegates have been trained to help with quality checking,

but then haven’t had the opportunity to actually be involved in quality checking.

We hope this gets better and we have information about training with Advance

Personal Support Services.

There was an open mike discussion about from delegates and then we heard

about the Driving Up Quality code. It is part of the response to the

Winterbourne scandal and has set of principles that aim to improve the quality

of learning disability services, beyond minimum standards. It is a voluntary

code, and according to the Care Quality Commission 80% providers are already

signed up to the code – BUT – this means 2 out of every ten providers are

not………….

Lancashire thinks Welcomes Values and the Driving Up Quality Code should be linked.

Afternoon Workshops

It was great to have the chance to do a second well-being

workshop.

Confidence Building – Jane, Donna

Zumba – Philip

Staying Healthy Mind and Body –Robert, Darren, Helen

5 ways to well-being – Sara, Richard, Sarah, Noor

Hate Crime

We heard from Steven Brooks MBE who is the Coordinator with the

National Disability Hate Crime Network, about some very important

actions in Lancashire. There is a Hate Crime Strategy Group and in

Blackpool there is a Learning Disability Reporting Centre. Towns

have places where a hate crime can be reported and any

organisation can apply to be a reporting centre.

Important changes in Blackpool:

2010 - 3 Hate Crimes were reported

2014 – 55 Hate Crimes were reported with police action being taken

Friendships and Relationships

Dave Spencer told us about the work they are doing on Friendships and

Relationships: ‘Connections Count and Counting Connections’.

He told us - and we all know - that for many years, how to make real friendships

and relationships has been a huge issue for people with learning disabilities.

Friendships must be taken seriously.

Each table was given a loneliness report that Dave has done and a Friends and

Relationships checklist.

Conference was asked should forum reps tell the government it should do lots

more work to help people with learning disabilities have real friendships– not

just with carers and paid PAs. The whole room said YES!.

The Renaissance Group in Tameside told us about the work they are doing for

adults with learning disability around sexuality.

They think it is important that people understand and can have same sex

relationships if they want, and on 28 June 2014 they are taking part in the

Tameside Gay Pride march.

Amanda Topps, the Community Engagement Officer in North Lancs told us about

their Champions friendship project. 100 people took part in their research about

the help people want to make friends.

Voice For All now have lots of activities– a restaurant club, theatre, cinema,

discos – all sorts!

We were sorry to say goodbye to our day delegates who had to get the

coach back…………………………….

Gala Dinner and Karaoke - but we had the Gala Dinner and Karaoke to look forward to. It was just lovely – and Philip, Richard

and Sarah smashed the karaoke!

Day 3

Winterbourne View - A Life Outside Hospital

Gavin Harding and Zandrea Stewart spoke about their work

following Winterbourne, to make sure it never happens again!

‘Moving on and making change happen together’.

Everyone deserves place to call home and live their life outside

hospital, and they will reduce the number of people living in a

hospital – a hospital is not a home.

June 14th 2014 is the deadline for all people in hospital to be under a review to move on. People to

share their experiences of what has helped them to have a life away from hospital – ‘The Great

Escape’. It can be found on Facebook and Twitter #WinterbourneJIP.

Association of Directors Adult Social Services Mark Palethorpe a Cheshire West Commissioner told conference about the plans to

improve things and bring people back to their families and friends.

Health and Social Care will work together and people can find out about ‘Better Care’

at their Health and Well-Being boards.

There is also an easy read version of The Care Bill.

Commissioners and the Self-Assessment Framework Commissioners from most areas had come to discuss the self-assessment framework with

delegates from their areas. Unfortunately there wasn’t a commissioner from Cheshire

East, so we talked with Zandrea Stewart.

Question Time Delegates could put questions to a panel from Health,

Social Care, Police and a Local MP.

The questions were:

Health

How can we get better health care –the learning

disability is seen first, it affects our health and has caused early deaths?

Living Well

How can we get rid of rules that services make that suit their needs not ours and give us

more person-centred services?

Staying Safe

How can we get help to have good relationships with people who are not paid to be in our

lives?

Being Heard

How can our voices be heard – we are worried that our voices will be lost nationally

regionally and locally. We are only asked when people want a comment so they can

pretend to be listening.

The Derek Russell Award for outstanding leadership in the North West.

The winner for 2014 was Lizzie McClennan from Voice For All.

There were 3 fantastic candidates and it was close but well-deserved –

WELL DONE LIZZIE!

Time to go……………..

Just time for a breezy stroll on the prom – then home – what a

packed three days!!

We can’t wait for next year!!!!