Yorkshire & Humber Regional Family Carer Network

Notes of the meeting held on 11th December 2014

Attendees:
Mark Feeny (Kirklees)
Gillian Payne (Scarborough)
Shirley Evison (Leeds)
Liz Davis (Leeds)

David Barker
Maggie Kellie (York)
Barrie Warner (Wakefield)

There were apologies from:

Lucy Horobin (Wakefield)
Kay Kirk (Doncaster)
Kathy Read (Doncaster)
Kathryn Spinney (Wakefield)

Jean Riley (North Yorks)

Rosie Tozer (York)
Mike Spinney (Wakefield)
Ian Parkinson (North Yorks)

Welcome and introductions

Sam welcomed everyone to the meeting.
The Learning Disability Alliance (LDA)
Dave explained the purpose of the LDA to offer a strong voice and lobby for all
people with learning disabilities, families and those who are connected to or
passionate about a good life for people.
The National Valuing Families Forum is a member but people can join individually
as well as groups
http://learningdisabilityalliance.org/
The Alliance was launched in November and Dave was there as the National
Valuing Families Forum rep. The LDA has decided to look at how it can support
people and families to quality check government or political party policies for how
they support (or not) inclusion. They are working on that now.
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The group discussed how such tools could be useful for checking local policies too.
Dave asked everyone to let him know how they think they can locally be connected
and this group can be.
There is a LDA families group that will be meeting in Leeds in the New Year, ask
Dave if you would like more information on that.
Sam and Dave will keep everyone updated on the LDA.
How families have responded to the cuts
Mark said that the families group in Kirklees have started to plan how they respond
to what they think will be big cuts to support and services after April 2015.
So far they have organised a briefing session on the budget plans with the senior
managers and families, then set up on line a standard letter to elected members
that families could download and send to elected members automatically and easily,
adding personal comments. They then have done a report on the analysis and
themes from those 50 letters sent and comments carers added to them.
The group are also adding to their booklets / guides written for families by families
with one on Moving On
http://www.ldcarersvoice.co.uk/documents
There are already some on understanding care assessments and Direct Payments.
The group discussed strategies and agreed that lobbying local elected members as
(well as MPs) is critical as much policy making is local now.
Sam suggested being well informed on the law (the Care Act comes in 2015 for
example) and other practice across the country can help families find solutions as
well as campaign or lobby.
You can find information about services and expenditure by councils or health at the
Health and Social Care Information Centre (HSIC) or the Learning Disability Public
Health Observatory (IHAL).
You can find the HSIC information on expenditure in social care for 2013-2014 at
http://www.hscic.gov.uk/searchcatalogue?productid=16602&topics=1%2fSocial+car
e%2fSocial+care+expenditure&sort=Relevance&size=10&page=1#top
Information more broadly on peoples support etc is on IHAL at
http://www.improvinghealthandlives.org.uk/profiles/
or
http://www.improvinghealthandlives.org.uk/publications/1241/People_with_Learning
_Disabilities_in_England_2013

National and Regional Update

National Valuing Families Forum
Dave gave an update of the last NVFF meeting.
Dominic Slowie the Clinical lead for people with Learning Disabilities for NHS
England came and spoke about priorities and work including
A focus on a health including a job etc
Working with CQC to check generic health services and how they treat
people with Learning Disabilities
A mortality review and learning from that to improve peoples healthcare
Olivia Buterworth the Head of Public Voice at NHS England came and spoke too.
This included discussion on how NHS England will be developing co production
groups that support existing networks. Dave will keep people informed on
connections to this group.
National Update
Sam went through the update she does for the Directors of Social Services, you
can see a copy on the link below
http://bit.ly/13X03Dl
This includes information on
Transforming Care and the Winterbourne Joint Improvement Programme
The Learning Disability Joint Health and Social Care Self Assessment
The Yorkshire and Humber Leadership Group
Publications and policies

The highlights to look out for included

Advocacy Workshops
The Winterbourne Joint Improvement Programme working with people from the
national advocacy steering group have planned some regional advocacy
workshops. These will take place over the next few months and will be facilitated by
Inclusion North.
The work is to enable people to come together to share best practice and find ways
for advocacy to benefit people who are in an inpatient setting or who are at risk of
being admitted to an inpatient setting.
A group of people from each local area are invited to attend that includes a selfadvocate, family carer, advocacy provider and professional(s) (for example, a local
commissioner).
Ideally, please try and locally organise this grouping of people and make a booking
to attend the workshop as one group. However, if this is not possible, you are still
very welcome to attend the workshop and make an individual booking.
Download the Transforming Care advocacy workshops invitation (PDF, 2
pages, 304KB).
Yorkshire & Humberside
20 January 2015
Cedar Court, Denby Dale, Calder Grove, Wakefield WF4 3QZ
Joint Learning Disability Self-Assessment
ADASS & NHS England launched the Joint Self-Assessment process in September,
requesting local areas complete it by 31st January 2015.
The Self-Assessment process and measures have been reviewed based on
feedback received nationally. The measures remain largely unchanged to allow
comparison to previous year but the process refined and hopefully improved.
The full information and documents are at:
https://www.improvinghealthandlives.org.uk/projects/jhscsaf2014
There is a regional priority setting and sharing event planned for 4th March
Sam will circulate details in the New Year
Care Act workshop for families with Professor Luke Clements
Organised by Inclusion North there are free places for families in all areas of
Yorkshire, Humber & the North East at this workshop on 11th February
http://inclusionnorth.org/about/news/care-act-workshop-11th-february-2015.html
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The YH Leadership group meeting

This is a meeting for any reps from local areas to come together to share their work,
influence regional approach or policy. It is chaired by Rosy Pope as the ADASS
lead and the next meeting is on 9th February 2015 in York Sam can provide more
information. The meeting is open to people with learning disabilities, family
members and professionals from Yorkshire and Humber.
The notes from that meeting are here:
http://inclusionnorth.org/projects/what-we-are-doing-now/yorkshire-humberleadership-group/

Regional Round up
Network members present shared their views on what the key issues are
locally, good things happening in their area and other information.

The big shared issues that will go in the regional report to the NVFF are:

What is going well?

Kirklees
Carers mobilised to contribute to budget consultation in
Moving on booklet. Written by carers for carers
Leeds
Mobile Changing Places unit
Leeds Teaching Hospital Trust recruiting Learning Disability
hospital champions and providing sessions to people to prep
for hospital stays.
Excellent example of Ambulance customer care from a carer
(we had a session with them on this some time ago!)
Wakefield
Clinical lead for Learning Disability being established and
DVD produced on safer places scheme
Mencap got 20+ people into work
Council signed up to mindful employers scheme
York
Lives Unlimited Doing it without them!

What are your 3 big issues?

1. Consultation over cuts
2. Demise of Partnership Boards and personnel changes, lack of continuity.
3. Annual health checks not as promised

Any other business

Discussed the delay in Personal Independence Payments assessments /
reassessments many families are glad of not having the stress but concerned
when reassessments will happen.
Date of next meetings:
12th March 2015
4th June 2015