National Valuing Families Forum

19-20 October, Loughborough

Attending:
Vicki Raphael (co-chair), Julia Erskine (NW), Wendy Burt
(Eastern), Marcella Cooper (London), Debbie Robinson (London,
Dave Barker (Y&H), Stephanie Chapman (East Mids), Esther
Peacock (South East), Patricia Charlesworth (Carers with Learning
Disabilities Network), Rhianon Gale (Hft), Liz Wilson (Dimensions),
Christine Towers (Foundation for People with Learning
Disabilities), Robina Mallett (Standing Commission for Carers),
Chris Scholl (West Mids), Cally Ward (Challenging Behaviour
Foundation), Dan Scorer (Mencap)
Guests:
Craig Hart (co-chair National Forum of People with Learning
Disabilities), Pamela Gallagher (Hft), Louisa Whait (Leicester LA),
Yasmin Surti (Leicester LA), Tricia Nicoll
Supporting:
Lucy Virgo, Angela Ellis (Inclusion North)
Apologies:
Stan Cooke (NE), Trevor Moon (NE), Helen Daly (Eastern), Viv
Cooper (Challenging Behaviour Foundation)
PLEASE NOTE: Pat and Louisa were only able to attend on the
19th October. Steph was only able to attend on the 20th October.
Monday 19th October
The NVFF moving forward
Tricia supported members of the forum to think
about the forums purpose and structure.
The work the forum did is outlined with these
notes. http://bit.ly/1lvaQga

The forum agreed that Vicki should remain as

co-chair with support from a small planning
group. Liz, Julia and Rhianon put themselves
forward for this group.

Transforming Care Planning the work in the

regions
Vicki introduced this piece of work and Tricia.
Tricia is working with Inclusion North to deliver
this work. The slides Tricia used to outline the
project are included with these notes. Tricia
outlined the work to date:
The proposal that Inclusion North submitted
to the Department of Health
The design day that people from both
forums attended and Tricia facilitated
Tricia supported the forum members to think
about:
How we can facilitate this in our region
Is this something we can do in our region,
or is there someone else better placed?
What is already going on that we might
build on
What other support is needed
The notes from this session are included here:
http://bit.ly/1O386Oj

Regional reps meeting

The regional reps met to discuss informally
issues across their area. Their discussion looked
at cuts to services and support, professionals
misinterpreting the Care Act, issues with flu jabs
and prescriptions and the need to invest in family
leadership.

Tuesday 20th October

Welcome and National Update
Vicki welcomed everyone to the day.
Vicki updated the group about some of the key
national developments.
LB Inquest there was a group discussion
about how the forum could let Sara know that
they are thinking about the family and show their
support.
Transforming Care Assurance Board the
meeting for Thurs 22nd October has been
cancelled at very short notice.
ACTION
It was agreed that the NVFF would write to the
Minister about this and the process of appointing
the co-chair to the board.
http://bit.ly/1QTnBOW
Vicki went to the board in July. The membership
has now been revised and is focused more on

the issues brought back by self-advocates and

families. The minister and government are very
committed to the board. The work both forums
are beginning will be fed back to this board.
NHS Fast Track areas have now submitted their
plans. Within these they had to outline how they
would engage with families and self-advocates.
Department of Work and Pensions are leading
on some work around pro active supporting to
paid employment. Amanda Wadsworth is the
lead and forum members particularly Dave
Barker are keen to link with this work.
Scott Watkin will now co-chair the Transforming
Care Assurance Board.
Learning Disability Board the board has
dropped programme from its title. A first draft of
the workplan for this group was shared at the
board, and it was agreed that the meetings
would be co-chairs by a self-advocate. This will
be Karen Flood.
There is renewed enthusiasm for the
employment work. Chris Cox will now be
working on the Green Paper so Zawar Patel will
be the Department of Health lead for the board
in future.
Ministerial Green Paper Roundtable both
forums were invited to take part alongside a
number of other organisations/providers. The
forums join message remained about the
important of advocacy for families and people
with learning disabilities.
CHANGE CQC work CHANGE are very keen
to engage with both forums. Lucy will circulate
the information about this project when it is
available. This led to a conversation about the

input of carers as part of the local inspection

process.
Skills for Care they are keen to have a
member of both forums on the Positive
Behaviour Support and Autism fund award panel
Transition Zandrea Stewart has asked for
family input into some work around transition.
There will be regional sessions and people
would be paid for their work and time. Vicki
asked that people contact Zandrea directly
about this.
Sir Stephen Bubb a meeting has been set for
December to outline the 12 month report and
next steps. Marcella remains the forum link for
this work. Rhianon let people know that
ACEEVO are holding some consultation events
around Transforming Care and will send out the
details.
Learning Disability Alliance in the past the
forum has agreed to support the alliance.
Recently, Simon Duffy from the alliance has
asked the forums to strengthen their
involvement and is clear that the alliance many
not continue if this support isnt given.
At the same time, a meeting has happened to
look at the setting up of Learning Disability
England. This group would also like the support
and involvement of both forums.
There was a discussion about both these groups
and how the forums will work with them. See the
Actions sheet for the agreement.

Dans update on the work Mencap are

involved in
Mencap have done some work on the Welfare
Reform Bill and this is available if forum
members would like to see it.
The Childcare Bill Mencap feels that the
proposals outlined offer little to family carers of
children with a disability and will continue their
work to challenge this.
Meeting the Challenge Guides There is a suite
of 11 documents including 6 guides and a legal
pack around what good support looks like. See
link
There are printed copies available and a postal
budget. People can get in touch with Dan if they
would like copies for their region.

Regional Reports
The forum discussed how their regional findings
link with the national work, and agreed what the
main issues at both levels are:
Cuts to services and support
How the Care Act is being interpreted by
professionals on the ground
The need to invest in family leadership
see Big Messages to the Programme Board
presentation
http://bit.ly/1LNBzKf
http://bit.ly/1Nq3t4C

UPDATE the forums messages were taken

very seriously by the Board. They have asked
for a report/evidence about the impact of the
cuts.
The issues around privatisation of pharmacies
meaning prescription drugs being given out in
different branding/languages has been taken
forward by Dominic Slowie (National Clinical
Director for Learning Disability) who has
charged Crispin Hebron (Clinical lead role in
NHS England) with talking to pharmacists about
how people with learning disabilities are
appropriately prescribed for. They will be looking
at adding info onto the spine of the prescription
for the pharmacist.
Dominic Slowie is also taking a lead on the
issue of some areas not offering flu jabs to
people with learning disabilities. Hazel Griffiths
has very publicly stated that people with learing
disabilities are a priority group for the flu jab.
Feedback from the allies and co-ordinators
meeting
Reflection on the work with Tricia on roles and
responsibilities this group recognised that they
are valid and useful to the work of the forum,
can communicate with a wider group of family
carers and share consultations.
This group also reflected that sometimes it can
be a hindrance for just the reps to be present for
the regional update session. Could the allies etc
be present at this as observers?

Update on the IHAL work with Chris Hatton

Chris talked about IHALs work priorities, and
talked about the importance of families and selfadvocates being involved in developing
questions.
The annual digest of statistics of people with
learning disabilities in England should be ready
by the end of the year. There will be easy read
summaries and Chris will be talking to the IHAL
advisory group about which areas to focus on.
Chris talked about the reasonable adjustment
guides guides on cancer screening and
dysphasia should be out soon and there will be
a guide on obesity. They have also been doing
systematic reviews of evidence in areas where
there is not much they have recently done one
on epilepsy and constipation will be the next one
focussed on this may also be a topic for a
reasonable adjustments guide.
Chris asked for suggestions from the forum for
further systematic reviews/reasonable
adjustments guides. Cally mentioned multiple
long term conditions. Wendy suggested postural
care. The forum also suggested menopause and
menstruation generally.
See Chris slides here: http://bit.ly/1lvbH0j

Mortality Review update

Robin is part of the Programme Steering group.
The Programme runs from June 2015 for an
initial period of 3-5years. It will support reviews of
deaths of people with learning disabilities aged 4
75 (inclusive) who are registered with a GP in
England at the time of their death. The
programme will roll out to each region in turn
starting in the North East who have already done
some work on the mortality review. The work will
start in January 2016. Each review will look at
whether further investigation is needed with the
expectation that 1 in 4 of the initial reviews will
go to multi-agency.
The programme is overseen by 2 advisory
groups 1 multiagency with 22 members
including Vicki and Dan from National Valuing
Families Forum and Annie Ferguson a sibling
carer. The second advisory group is made up of
self-advocates and 9 people sit on this group.
Tina Walker is the rep for the National Forum of
People with Learning Disabilities.
Robin was asked about the review of the carers
strategy. So far the Standing Commission for
Carers have heard nothing. The forum asked if
there was a mechanism to be part of shaping this
review.
ACTION - Robin will send Carers Lead email
contact to Cally to offer help for carers strategy.
The forum felt there was a wider tie here into the
female agenda. There was a suggestion to invite
Kate Green to the next meeting.
ACTION Dave to write to invite Kate Green

DOLS consultation
Rhianon outlined the key proposals in the DOLS
consultation see presentation attached.
http://bit.ly/1jy9qQE
The forum also went through the response from
Yorkshire and Humber family regional forum.
The forum agreed that this would be the basis for
the response from the National Valuing Families
Forum.
The discussion focussed on authorisation in
domestic settings with concerns from the group
about how this would work in practice and
conflict with Article 8 the right to family life.
There was also concern that people were still
struggling to understand the Mental Capacity Act
and that a whole new system for DOLS was not
necessarily the best solution.
ACTION - Lucy to draft response based on Y&H
and forum discussion with input from Liz,
Rhianon and Christine.
See response here. http://bit.ly/1TujGGB

Green Paper update

Chris Cox from the Department of Health made a
short film providing an update to the Green
Paper for the forum. This is attached with these
notes.
http://bit.ly/1Rm1akG

Chris set out the 3 main parts to the planned

work around the Green Paper:
things that can happen now, like changing
how the NHS buys services
how the law might need to be amended,
around how people can have the right to
challenge, detention under the Mental
Health Act
bigger changes that need to happen longer
term
There was a discussion around the question
Chris posed. Generally the forum felt that there
was limited details about the planned work. The
forum would like the feedback to Chris to be that:
more of this detail is needed
there needs to be a greater emphasis on
the use of longer term, more citizen
advocacy
Plans for the next meeting and Actions to
take away
The next meeting will be held at the Link Hotel in
Loughborough on the 9 and 10 February 2016.
Cally raised devolution as a big issue that will
affect families and the National Valuing Families
Forum there will be implications for how the
forum gets involved politically with regions
becoming more powerful.
This, alongside a focus on the female agenda
with the review of the carers strategy look to be
the two big themes for the next meeting.

Actions sheet is attached with these notes.

http://bit.ly/1QdIK4A

Burning Issues and Any Other Business

BILD have asked for volunteers to champion
their work on sexual exploitation. Here is the link
to find out more:
https://youtu.be/2mczSUwchgE

ACTION forum members to contact Lucy and

Keith Smith if they want to take this role on
The forum agreed to continue to be a member of
the alliance and to be supportive of Learning
Disability England. They agreed they needed to
find out more about their planned next steps
before deciding whether to be part of their
steering group or not.
Volunteers were requested for Learning
Disability Today on 26th November.

PLEASE NOTE: The next National Valuing Families Forum will be

on the 9 and 10 February 2016 at The Link Hotel in
Loughborough.
The National Valuing Families Forum after this will be on the 6 and
7 June 2016 and will be held at Burleigh Court in
Loughborough.
The afternoon of the 7 June will be a joint meeting with the
National Forum of People with Learning Disabilities.