National Valuing Families Forum

23-24 June, Loughborough

Attending:
Vicki Raphael (co-chair), Julia Erskine (NW), Helen Daly (Eastern),
Marcella Cooper (London), Debbie Robinson (London), Jo Hough
(Inclusion East), Dave Barker (Y&H), Stephanie Chapman (East Mids),
Margaret Upham (South West), Jan Sunman (South East), Susan Kirkman
(Autism Programme Board) Patricia Charlesworth (Carers with Learning
Disabilities Network), Jodie Bradley (Carers with Learning Disabilities
Network), Gemma Ferguson (supporter), Rhianon Gale (Hft), Liz Wilson
(Dimensions), Christine Towers (Foundation for People with Learning
Disabilities)
Guests:
Karen Flood (co-chair National Forum of People with Learning
Disabilities), Pamela Gallagher (Hft), Paul Upham, David Harling (NHS
England), Maggie Graham (NHS England)
Supporting:
Lucy Virgo, Angela Ellis, Samantha Clark (Inclusion North)
Apologies:
Chris Scholl (West Mids), Stan Cooke (NE), Wendy Burt (Eastern), Viv
Cooper (Challenging Behaviour Foundation), Philippa Russell, Robina
Mallet, Cally Ward

PLEASE NOTE: Dave and Steph were only able to attend on the 23 June
as the East Midlands Employment workshop was on the 24th

Tuesday 23rd June

Regional reps meeting
The regional reps met to discuss informally issues
across their area, discussion focussed on
promoting/marketing the NVFF and connecting with
younger families
Introducing Inclusion North
We shared our film where our office team Claire and
Marie introduced themselves, and showed where we
were based.
https://vimeo.com/131345397
We shared the Money report showing our first 2
months spending (see attachment) and invited
members to contact us if they had further questions.

Working Together Agreement

We talked about how we should all work together.
Sam shared a presentation
http://bit.ly/1D4NekZ
and we asked members to work in groups that
looked at 4 areas:
How do we work together well so we stay
strong at a national level?
What will help us work well in the regions?
How do we make sure we work together well

across the forums and let each other know

what we are doing?
Who takes decisions, and what should they
take decisions about?
Notes from the group discussions are here
http://bit.ly/1HjEWtM
.

ACTION
We asked for volunteers to join:
- a virtual group to look at the Working Together
agreement
- a group that might meet to look at how the
forums work well together

Voices of Experience film

The group watched Angelas story. Please do share
the links when they become available!

Wednesday 24th June

National Update
Vicki updated the group and led the discussion
about the national update since the last meeting.
Alistair Burt has become the Minister of State for
Community and Social Care. The forum agreed that
they are keen to work with him and explain more
about their role and important priorities.
Justin Tomlinson has become the Parliamentary
Under Secretary of State for Disabled People.
Again, the forum members are keen that he is

aware of the issues that family carers of people

with a learning disability face.
Vicki let the group know that the minister will not
chair the Programme Board. He will be actively
involved and chairing the Transforming Care
Assurance Board. This led to a discussion about
who will chair the Programme Board and this is
likely to be co-chaired by a senior civil servant from
the Department of Health.
The forum were in agreement that Vicki can
challenge the decision about who chairs these
groups, in addition to the Autism Board (Sue
explained the Minister wasnt chairing this either).
Lucy explained that both forums have been
approached about writing a joint article for the
magazine Politics First. They would be given a
reduced rate of 500 and could have a large
degree of say over the content. The forum were
happy with this to happen, if the National Forum
for People with Learning Disabilities agreed.
On May 6th there was a Learning Disability
Programme Board development day. The feedback
from the day was positive with a commitment to
co-production. Since the day however, the
Department of Health has decided to write the
work plan for this board without a commitment to
working in a co-produced way. The Programme
Board met on July 7th and the workplan is very
much at draft stage and they are keen to ensure it
is co-produced.
There will be the first pre-meeting for this group
next week where Vicki will be raising the concerns
of this group.

Recently, the Department of Health and NHS

England have been looking at the membership of
the Transforming Care Assurance Board. The board
has agreed to engage further with family carers
and self-advocacy and so will increase the amount
of representatives attending and contributing to
the board.
The National Valuing Families Forum have been
asked to think about who represents them at the
Transforming Care Assurance Board. This would
be in addition to there being a Challenging
Behaviour Strategy Group (CBSG) representative.
At the moment, Viv Cooper attends on behalf of
the NVFF but there is now the opportunity for
there to be a CBSG & NVFF rep. There was
agreement from the group that by having an
additional representative it could only strengthen
the work around this agenda.
See Actions sheet attached.
NHS England now have learning disabilities as one
of their top 5 priorities.
Also, last week announced that they will have a
learning disability forum. The Patient Public Voice
Team (which Olivia Butterworth leads Olivia
came to the December 2014 forum meeting) will
lead on this work. Vicki and Karen Flood attended
the launch event and it seems they are keen to use
and connect to the existing mechanisms and
networks that have been developed. The group
were glad that there is commitment to work with
the forums but hope that this will be done in a
meaningful way. We will share more information
to be shared via regional network as it comes out
from NHS England.

The work of the Mortality Review is continuing

see notes later of the Skype call with Pauline
Heslop.
Sir Stephen Bubb is still chairing a group to review
the progress or response to the work he led last
year for NHS England. Vicki asked for someone to
represent this forum at this. In the past, Vicki and
Karen Flood have attended these. Travel will be
paid by NHS England. Marcella expressed an
interest in attending this group. See Actions sheet.
http://bit.ly/1HRqEDP

ACTION
Rhianon asked forum members to remember Hfts
Care Act workshop offer to the regions.
Regional Reports
The group discussed how their regional findings
link with the national work, and agreed what the
main issues at both levels are:
- Cuts, closure of ILF and the stories attached
to this were particularly highlighted
- Information
- Attitudes, values and judgements
See photo
http://bit.ly/1HofVKB
and Big Messages to the Programme Board
presentation
http://bit.ly/1CtHF4J

Mortality Review
Dr Pauline Heslop joined the meeting by Skype and
talked about the Mortality Review. She
summarised the key points in the information
sheet
http://bit.ly/1grAvEp
She is keen for families and self-advocates to be
involved in the work.
Jo asked about the deaths of young people these
are automatically reviewed under law but this
programme will work alongside this.
Pamela asked how reasonable adjustments will be
reviewed at a national level. Pauline said there is
an anticipatory duty, there are some reasonable
adjustments you would expect (e.g. easy read
information) but you would also expect individual
reasonable adjustments such as access
requirements to be included in peoples notes and
the necessary actions to be implemented.
Jodie asked if this was linked to the work of Death
by Indifference. Pauline explained that this was
part of this work.
Jodie asked if people with autism would be
included. Pauline said this is something the
programme would have to work out
Liz asked how far the programme will go back
Pauline said there will be a development period of
3 months in each area and then the work will go
live. All deaths following this date will be
included.

There was concern amongst members about the

different rate of pay given to self-advocates and
the separate consultation.
ACTION
NVFF would write to Pauline about this.
Regional Review update
Lucy went through the main headlines from the
findings of the review.
Her presentation is included with these notes.
http://bit.ly/1JTpsAe
Forum members then had a discussion about next
steps, see attachment.
http://bit.ly/1ftk2zj

Preventing admissions/Improving Lives Team

The group welcomed Maggie Graham and David
Harling to the group. Everyone introduced
themselves and then David and Maggie gave a
presentation that is included with these notes.
http://bit.ly/1NXY5DZ
Learning Disability Alliance film
The Learning Disability Alliance film was shown.
https://youtu.be/QV2hAglkvQE
Forum members discussed how self-advocates and

families were involved in the alliance they had

some concerns. They would like the Alliance to
invite the co-chairs of both forums to their
meetings.
They supported the letter but felt the letter to the
Mental Health Taskforce should be in easy read
see Actions sheet.
http://bit.ly/1HRqEDP
What did we think about No Voice Unheard
Jo and Rhianon went through the big messages
about the green paper from the NVFF.
The presentation is included with these notes.
http://bit.ly/1L1lxA7
Forum members then had a discussion about must
haves around the green paper, see Notes attached.
http://bit.ly/1JTpEj7
Plans for the next meeting
Angela led a discussion about the venue for the
next meeting. The DH are keen for us to look at
somewhere that also gives social value. Inclusion
North have tried dozens of places but this is
proving difficult. We discussed having meeting
rooms and a separate hotel in Birmingham. Forum
members were generally against this idea
moving between 2 places. Social value could be got
from venues regions use.
We also discussed both forums coming together

for a joint meeting. NVFF were supportive of this

idea.
Vicki talked about the idea of having a 15 minute
focus on one region we are trying this at the
National Forum for People with Learning
Disabilities. Jo asked if this could be more than one
region at the meeting, as people might be more
willing to come forward then. It was agreed we
could try this.
Burning Issues and Any Other Business
See Actions sheet.
http://bit.ly/1HRqEDP

PLEASE NOTE: The next National Valuing Families Forum is

likely to be in October or early November, we are still finalising
the date, and will let you know asap.