National Valuing Families Forum

8-9 February, Loughborough

Attending:
Vicki Raphael (co-chair), Julia Erskine (NW), Wendy Burt
(Eastern), Helen Daly (Eastern), Jo Hough (Eastern), Marcella
Cooper (London), Debbie Robinson (London, Dave Barker (Y&H),
Stephanie Chapman (East Mids), Jodie Bradley (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), Shirley Corbett (West Mids), Cally Ward (Challenging
Behaviour Foundation), Bella Travis (Mencap)
Guests:
Kerry Martin (co-chair National Forum of People with Learning
Disabilities), Hannah Leach (supporter for Kerry), Zawar Patel
(Department of Health), Jessica Wood (supporter for Jodie), Sara
Ryan (Justice for LB), Jenny Lacey (East Mids), Crispin Hebron
(NHS England)

Supporting:
Lucy Virgo, Angela Ellis (Inclusion North)
Apologies:
Stan Cooke (NE), Trevor Moon (NE), Viv Cooper (Challenging
Behaviour Foundation), Susan Kirkman (Autism Programme
Board), Pamela Gallagher (Hft), Chris Scholl (West Mids), Dan
Scorer (Mencap), Louisa Whait (East Mids) Yasmin Surti (East
Mids)
PLEASE NOTE: Cally Ward could only attend on 8th February and
Dave Barker, Helen Daly, Jo Hough, Sara Ryan, Jenny Lacey and
Crispin Hebron could only attend on 9th February.

Monday 8th February

Welcome from Vicki
Vicki opened the meeting. She asked that forum
members share their experiences about the benefit
cuts. These will then be collated and taken to the
Programme Board.

Zawar Patel and the Department of Health

Action Plan
Presentation attached with these notes.
http://bit.ly/1oHc0aD
Zawar and colleagues have been consulting with a
range of people and organisations about the action
plan. He is happy for the plan to be shared with
forum members, and for members to feed back
their views.
Zawar outlined 3 key themes contained in the draft
action plan:
Giving people a life
People being part of the community
Health & social care being able to respond to
peoples needs
The plan is proposing to:
Span all ages
Be relevant to all people with a learning
disability and family carers
The plan will be used at least up to 2020, until the
time when the next election is planned.

General feedback about the Action Plan from the

group discussions included:
Should make good use of what exists now
eg. the Care Act isnt known about by many
Focus is too big in the action plan should
use what already exists and make the links
with this
There needs to be a commitment to investing
in carers so that they are resilient and able to
challenge
Needs a greater focus on early years and
intervention
People have different priorities and needs at
different times in their lives the action plan
needs to reflect this and not prioritise one
theme or strand more than any others
Needs to be core principles outlined on in the
plan
Need to focus on outcomes for individuals
How will the work happen and connections
with ie. other government departments be
made?
There needs to be a focus on rights and
personalisation everyones priorities will be
different

Feedback from the group discussions about

the 3 themes included:
Giving people a life
How will some of the links be made with
other policies, organisations and government
departments?

People being part of their community

People need to know whats available and
what their rights are
Initiatives like Safe Places are useful, but
these dont get used or rolled out in each
local area
How can people access good, independent
advocacy?
Health and social care
Eroded fields of expertise lack of
knowledge and awareness of learning
disability
Lip service to children, early intervention and
prevention this needs to be embedded
See images from the day
http://bit.ly/1SU30Lz

What happens next?

Zawar is going to the National Forum on 16th
February, then the plan will be taken back to the
Programme Board on 23rd February.
There is also likely to be an event in mid-March
with a range of people and organisations that will
shape the plan further.
The plan will be published around the end of March
as long as the co-production element is done
properly. Jon Rouse has said if more time is
needed to do this properly it will be given.

Regional and Organisations Reports

Members fed back about their work. Some of the
key issues included:
Knowledge gap professionals carrying out
several roles and not able to offer families good
information, services and support
Cuts families not getting good information about
what good looks like
CQC Experts cutting the rates of pay and
offering the contract to a different provider
See big messages paper to the Board here.
http://bit.ly/1Rng0WR
Whats working well?
Employment project that the Foundation are
delivering When I Grow Up
Confirm and Challenge groups in North West
Day 2
Welcome back
Vicki announced that she will be standing down as
chair after the next forum meeting. This will be a
joint meeting with the National Forum for People
with Learning Disabilities.
National Update
Vicki attended the Programme Board pre-meet.
She gave the group an update on the key themes
and agenda items that will be at the National
Learning Disability Board on 23rd February.

These included:
Learning Disability Action Plan
Data and metrics checking progress
No Voice Unheard, No Rights Ignored
Community Catalysts
Transforming Care and Premature Mortality
Jo Hough attended the Transforming Care
Assurance Board on behalf of the forum. The
report Jo has prepared is attached here.
http://bit.ly/1QcKt7z
Marcella Cooper has attended the Sir Stephen
Bubb group and was able to challenge some of
the views and approaches at this. She has sent in
a typed script of the meeting.
http://bit.ly/20V6BID
http://bit.ly/1T6TSUs
Marcella (alongside Sue Kirkman) has also been
part of the Positive Behaviour Support funding
panel. She will keep updating the forum about this.
Report here
http://bit.ly/1T6TZiQ
Helen, Julia, Steph and Vicki have been attending
the sessions about the revised Self-Assessment
Framework. Crispin Hebron is coming to this
meeting about this.
Forum members have been talking to people who
are setting up Learning Disability England.

They ran a session for families which Liz, Vicki and

Wendy attended. It is still not clear how and what
will happen around this.
There is a Homes Not Hospitals pack about to be
printed. Both forums have inputted into this
publication and copies are going direct to the
regions.
Introductions
Vicki welcomed some of the guests and members
arriving to the meeting.
Forum members introduced themselves, saying
who they were, where they had come from and
what their placard would say if they were part of a
campaign.

Mazars Report
Rhianon and Liz gave a short presentation about
the main findings in the Mazars report.
There was a lot of discussion about personal
responsibility and forum members shared the
things that they find difficult.
Dave shared a letter from one of the Y&H regional
forum family members about the circumstances of
her sons recent death.
Forum members were asked to think about actions
both for themselves and for the forum as a whole.
See the flipcharts here.
http://bit.ly/1mXE73I

A subsequent discussion following the forum via

email came up with some initial broader actions:
NVFF to use their big messages slot to talk
about Mazars at the Learning Disability
Board
Each region to ask that all deaths of people
with learning disabilities are investigated no
matter what is on the death certificate (Essex
Public Health have committed to review
learning disability deaths as a matter of
course)
NVFF to ask for the LeDeR work to be
embedded and to extend to people in
supported living
Each region to use the FOI templates from
the North West to challenge what is
happening in their region
NVFF to call for a robust system of
investigation based on the Police Complaints
Commission (see Oxfordshire Family Carer
Support Network response to Mazars report)
NVFF to press for external scrutiny of deaths
of people with learning disabilities

Learning Disabilities Mortality Review (LeDeR)

Robina went through the presentation of her
colleague, Pauline Heslop. This is attached to
these notes.
http://bit.ly/1Q04q3E
Two key elements of the programme will be:
Local review of deaths
Core data collection

Comments and questions from the group included:

Will the reviewers be able to effectively
challenge information contained within
peoples notes?
Will the reviewers have access to all the
notes and records that they need to carry out
a comprehensive review?
It seems unfair that family members dont
appear to be paid for their time when they
are part of a review team
Will the reviews that uncover neglectful or
dangerous practices be set up in such a way
that they can take relevant action?
Action:
Forum to write to the programme leads to
ask if family carers will be paid for their time
when part of a review
Robina will check how comprehensive the
initial phase of the review will be (core data
set)

Self-Assessment Framework
Crispin explained that he is seconded to NHS
England for 4 days per week. Initially, this was a 6month secondment but has now been extended for
the next financial year.
Crispin asked the group to consider what his work
priorities should be.

The priorities that came from the group included:

Learning Disability Liaison Nurses
Health Checks and Health Action Plans
Medication and pharmacists
Screening (work with the screening lead on
communications at Public Health England)
Inconsistency (developing a standardised
template for the Annual Health Check)
Hearing and sight tests
Health Equality Framework
Self-Assessment Framework
Many of these things have been picked up as
priorities by Crispin and his colleagues.
Some of the work is listed here in green.
All services that are required to meet their equality
duties will need to know in advance of treatment
that people have a learning disability. The NHS
Spine Summary Care Records can tell clinicians if
people have a learning disability. At the moment,
individual records contain limited information but
there is scope to extend what is included.
Crispin also mentioned that he has applied for
monies to carry out further research that will build
on the findings of the Marmot Review:
http://bit.ly/1T6ULfC
There has been a group of people who have met to
agree what the Self-Assessment Framework (SAF)
should look like in the future.
A piece of work has been commissioned to enable
the Health & Social Care Information Centre

(HSIC) to develop the General Practice Extraction

Service (GPES). Public Health England will then
use this data to compile a local data set. Local
areas will then need to make sense of what this is
telling them and how this is aligned with what life is
actually like for local people.
Discussions are underway now to determine if
there is funding to enable local people and areas to
gather this qualitative data.
Transforming Care Doing the work in the
regions
Tricia couldnt dial in as the sound quality was too
poor.
Lucy asked the regional reps to share information
about:
Their regional approach
What people are positive about
Any worries or concerns
See information here.
http://bit.ly/1RnhGzJ

Future Service Model Specification project

Kevin Elliott from NHS England skyped into the
forum to talk about the project which will look at:
What do people want from services in the
future?
How can we learn from the good services
and support that already exist?

Kevin was looking for forum members to be part of

a working group that will meet in March and
September.
He also talked about work on a dynamic register
that he was looking for forum members to be
involved with.
Kevin was due to send a briefing paper but some
of the information within that does not correspond
to what was said on the Skype call so we are
waiting for this to be updated before sending the
request out.
Burning Issues
Forum members and co-ordinators were asked to
sign the Working Together Agreement and send it
back to Lucy at the Inclusion North office either
via email or a paper copy.
Forum members were asked to complete their
expense claims within 2 weeks of the forum for
processing.

The next National Valuing Families Forum after will be on the 6th
and 7th June 2016 and will be held at Burleigh Court in
Loughborough.
The afternoon of the 7th June will be a joint meeting with the
National Forum of People with Learning Disabilities.
The National Valuing Families Forum agreed to meet at a slightly
earlier time of 1pm and not continue the formal meeting into the
evening. There will be an opportunity with this earlier time slot for
CTR experts to share themes and develop a co-ordinated
response on their role/the effectiveness of the CTRs from the
regions to feedback to NHS England.