National Forum of People with Learning Disabilities

16th and 17th February, Burleigh Court, Loughborough

Attending:
Craig Hart (co chair) supported by Paula
Camborne and Jan Walmsley
Kerry Martin (co chair) supported by Hannah
Leach
Jonathan Hurley (co chair after this meeting)
supported by Frank Hurley
Carrie Ann Beavan (vice chair after this
meeting) supported by Vicky Tantony
Harry Longmoor (North East) supported by
Martin Gallagher
Alison Owen (Yorkshire and Humber)
supported by Sabbah Abbas and Sally
Ferguson-Wormley
Ian Davies (East Midlands) supported by
Marie OSullivan
Neil Davies (West Midlands) supported by
Sarah Offley
Carol Lee MBE (Eastern) supported by Alex
Morris
Tina Walker (South East) supported by Holly
Smith
Tammy Peapell (South West) supported by
Geoff Shepherd

Lucy Virgo, Angela Ellis (Inclusion North)

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Guests:
Zawar Patel (Department of Health)
Tricia Nicoll
Paul and Pam (My Life My Choice)
Who couldnt come?
Christian Raphael (rep for people with complex
needs) wasnt well

Welcome to the meeting

Craig welcomed everyone to the meeting.
People introduced themselves saying one thing
they wanted to get out of the meeting.
You can see what they said on the link
http://bit.ly/1QQ7nqR
Kerry let people know that it is the last forum
meeting Craig will be coming to. Everyone
thanked him for his hard work.
People welcomed the new co chair Jonathan,
and the new vice chair Carrie Ann, to their
roles as well.

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Minutes from the last meeting and actions

The minutes were agreed.
Everyone went through the actions of the last
meeting.
There are a few points that need following up:
The meeting with Department of Work and
Pensions: this should happen soon as the
person at DWP has now sent through
some dates. Jonathan and Mark
Shackleton will be part of this.
Lucy will find out about the work Andrew
from the South West did
Lucy will check if people want the NHS
England participation team members to
come to the next forum
Lucy will work with Tina who wants to link
into the work with BILD about sexual
exploitation
The Department of Health Action Plan
Zawar Patel from the Department of Health
came to talk about the Action Plan that they are
writing.
Zawar gave a presentation explaining what the
department are thinking about putting into the
plan. You can see the presentation here
http://bit.ly/1nb66wH

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Forum members then spoke about what they

thought about some of the big things in the
plan.
Some of the things the forum members said
were:
We dont like that the plan talks about
giving people a life. Being should be in
control of their own life
The plan should be based on what
matters to individuals one plan doesnt
fit all
Will there be clear actions and how will
the work be checked?
We need to think about what people with
a learning disability can offer their
communities
It may save some money to cut some
services like transport, but it may mean
that other things like mental health
services then have to spend more money
Zawar let the forum members know about
some of the next steps.
The plan will run for 4 years. This is up to 2020
when there is the next general election.

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The Department of Health will check up on how

the things listed in the plan are happening in
several ways including:
Through the Self Assessment Framework
Getting feedback from the National Forum
and the National Valuing Families Forum
The plan will be signed off in spring this year.
People will be able to take away copies at the
June meeting. Its also hoped that the minister,
Alistair Burt will be able to come.

Regional reports
Here are the links to the regional reports that
were sent back:
3a North West
http://bit.ly/1ThqKtL
3b North East
http://bit.ly/1Qn0s6H
3c East Midlands
http://bit.ly/1UtTkHm
3d London
http://bit.ly/1OHGZIb

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3e South East
http://bit.ly/21Dh9yg
3f West Midlands
http://bit.ly/1Sc6mbZ
3g Eastern
http://bit.ly/21vAZPr
3h Yorkshire & Humber
http://bit.ly/1XV5A3f

About our region

Tammy gave a presentation about the South
West region. You can see the SW region
report and Tammys presentation below
http://bit.ly/1Sc6wQs
http://bit.ly/1Sc6Izg

Tammy told the group:

There is less support for self advocacy
groups which means some are closing
Councils are not working as well with
people with a learning disability as they
used to
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 They are planning a big conference in the

region
She has arranged to meet with a minister
from the Department of Work and
Pensions on 11th March. Tammy would
really like forum members questions and
stories to take to this meeting.

Christians Gap Year Film

Christian was unwell so we agreed that he
would share his presentation at the next Forum
meeting.

Forum Action plan

Members of the forum split into three working
groups to focus on the 3 priorities:
Having a voice
Changes to benefits
Keeping safe
Each group looked at what the forum action
plan said and what had already been done.
The working groups came up with actions that
need to be completed by the next forum
meeting to move this work forward.
Here is the action plan
http://bit.ly/1WS3YX3
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And here are the actions from the November

meeting
http://bit.ly/1QGlR6x

Wednesday 17th February

Welcome back
Craig and Kerry welcomed everyone back
to the meeting.

National updates since the last meeting

Craig, Kerry, Jonathan, Carol and Carrie
Ann updated everyone. You can find the
national update report on the link at
http://bit.ly/1Rf1EW5
Some of the main points were:
Learning Disability Board The next
meeting will be on 23rd February. They will
talk about the Department of Health Action
Plan that the forum worked on day 1 of the
meeting.
Self Assessment Framework There was
a session about this later in the day

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Green Paper Working Group This was

looking at how people can have 1 named
social worker. Carol let people know about
the report that has come from this. There
were some concerns about the pilot area
and how advocacy will be offered to people.
Mortality Reviews Tina said that she had
been supporting this work. The Review is
making children and young people and
people from black and minority ethnic
communities its first priority.
The team are still looking for more people
with learning disabilities and families to
support them with this work.
Cuts Paper This will be taken to the next
meeting of the Learning Disability Board.
Members were asked to give examples that
could go into this.
Learning Disability England Steering
Group Kerry went to this and asked for
more information to help the forum decide if
they want to be members. The group voted
to ask Gary Bourlet along to the next forum
meeting in June.
Craig brought some copies of the pack
called Meeting the Challenge. People can
look at these online or let Lucy know if they
would like paper copies.
Transforming Care Update Jonathan
went to the Transforming Care Board. The
numbers of people with learning disabilities
in hospital is going down slowly.
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Scott Watkin, co-chair of the Learning

Disability Board has sent both forums a
letter. He has asked if he can meet with
people with a learning disability and family
carers separately before the board
meetings.
The forum members talked about this.
Forum members think it is a good idea that
family carers and self advocates meet
together so they are a strong voice. Some
members felt that there can be challenges
when these meetings happen, but it is
important to try and make these things
better. The group then voted to decide if
they agreed with there being separate
meetings.
Agreed: National Forum reps want the
meetings to still happen with family carers.
Mazars Report
Pamela and Paul who are members of My
Life, My Choice joined the meeting by
Skype.
They talked to people at the forum about the
work they have been involved in around the
Mazars Report and their campaign to make
things better for people with a learning
disability. You can find out more about this
campaign here
http://bit.ly/1Lqbrff
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My Life, My Choice members would like the

senior team and board from Southern
Health to resign. This is because they feel
that this team arent taking responsibility for
what happened to Connor Sparrowhawk
and other people when they were staying in
one of the Southern Health units.
My Life, My Choice are looking at setting up
a petition to ask for the senior team from
Southern Health to resign but want to check
Connors family are happy for this to
happen. They will share this with forum
members if they go ahead.
My Life, My Choice would like the forum
members to:
Go back to their local areas to tell
people about what happened in
Oxfordshire. They could ask their MP
what is being done in their own area.
Join the Facebook page and twitter
feed (@mylifemychoice1) for My Life,
My Choice so you can hear about any
news
Kerry asked if there is a template for people
to write to their MP. My Life, My Choice will
make one and send this to Lucy.
Craig suggested that the forum take an
update about the campaign to the Learning
Disability Board.
Agreed Kerry, Craig and Carrie Ann will
ask the Learning Disability Board what is
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happening about the Mazars Report by the

government.
They will take this as the main item from the
forum.

Self Assessment Framework

Craig, Alison and Jan presented about this.
They explained that the Self Assessment
Framework has been running since 2007. It
is now a joint health and social care
framework.
It is used to find out what local services and
support are like for people with a learning
disabilities and their families.
Commissioners then use this information to
plan what services they need to provide and
buy from others.
Craig and Jan asked people to have group
discussions about what the Self
Assessment should be checking under
these 3 headings:
Good Life
Active Citizenship and Rights
Health & Social Care Needs
The points made as part of these
discussions will be taken to the national
group that is meeting on 24th and 25th
February.

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You can see the feedback on the SAF

below
http://bit.ly/1oIWM4f

Saying thank you to Craig

This will be Craigs last forum meeting as co
chair. Kerry presented Craig with a thank
you gift and card from the forum to
recognise the hard work he has done on
behalf of the forum.

Transforming Care Regional Work

Tricia dialled into the meeting.
Forum members and regional co-ordinators
talked about their plans and how the work is
going.
http://bit.ly/1UtV6Ih
Agreed:
Tricia will draft a letter that groups can send
to their local commissioners to ask about
how they can link in with people and
families. People dont need to use this if
they dont want to.
Tricia will make up a template that the
regions can use to port back about their
findings. Lucy will send this out.

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Taking information back to the regions

Lucy reminded the forum that they have
decided to take the Mazars Report to the
Learning Disability Board as their big
priority.
Here are the Actions
http://bit.ly/1pksTrG
Burning Issues/AOB
Tina asked what she can report back to her
region about the National Forums work.
People said some good examples are the
Homes Not Hospitals pack and the
Department of Health Action Plan.
Kevin Elliot dialled in to the meeting. Kevin
is working on something called the Future
Service Model. You can find out more
about this work here. This is setting out
what the NHS wants to buy for people with a
learning disability.
He would like:
4 people from the forum to come to a
meeting on 14th March
To hold a separate meeting with forum
members about the work. This meeting
is likely to be in June.
Peoples supporters costs and travel
expenses will be paid. There will also be
payments made for people to prepare for
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these meetings.
Lucy will send further information.
The Homes Not Hospitals pack is almost
ready. It should be printed in the next few
weeks.
Lucy let people know that she will be
working on the cuts paper in the next few
days. This will be taken to the board, but
more examples could be sent in later and
included for the June forum meeting when
hopefully the minister, Alistair Burt will be
coming.
Tina, Carol and Carrie Ann will be talking
to Lucy about how the joint part of the next
meeting with the National Valuing Families
Forum can work well for everyone.

PLEASE NOTE: The next National Forum of People with

Learning Disabilities meeting is on the 7th and 8th June.
The first part of the meeting on the 7th June will be a joint
meeting with the National Valuing Families Forum.
Both meetings will be held at Burleigh Court in
Loughborough.

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