Information for the North East Family Carers Network

July 2018

1. Update from Inclusion North:

We have just launched the Families Listening Project which is based

on the research our Family Advisors did last year. Families of people
with a learning disability, autism or both told us that they do not feel
listened to, that many areas are experiencing reducing support networks
and that they are becoming isolated.
The project is based on our belief that there is real power in listening to
and sharing people’s stories.
The aim of the project is:
• To document the experiences of families now for use within a
wider context to influence change and bring about greater
understanding.
• For families to feel listened to and value the experience of be
heard.
The project offers the additional potential for families to stay connected
and gather strength and support from one another.
This is a pilot project and will be delivered initially in 4 of our member
areas, 2 in the North East and 2 in Yorkshire & Humber.
We will keep you informed of how this work progresses.

Since our last update we have sent out topic-based briefings on

Mental Health, Physical Health and the next one is focusing on Profound
and Multiple Learning Disabilities. These give context to the issue,
examples of good practice, links to additional support or resources and
up to date policy and campaigning information. All are available on our
website www.inclusionnorth.org

2. News from National Valuing Families Forum (NVFF)

Members of the former National Valuing Families Forum self-funded a

meeting in Birmingham on 2nd July. Attended by 25 family carers and
people from organisations working directly with families the meeting
brought together people from across the country.
The group was encouraged by the number of people still doing good
work with families, and the commitment to still have a family voice that
could influence regionally and nationally. It was agreed that the National
Valuing Families Forum name should continue to be used, as it remains
widely known and referenced.
NVFF agreed to meet again in six months’ time to share and update the
continued work. They will do this via email and virtual networks in the
meantime. There also looks to be some opportunities to gain small pots
of money.
Some key headlines from the meeting were:
• LeDeR produced a film called Dying Matters which focuses on why
families are welcoming the reviews into deaths – you can see it
here: https://www.youtube.com/watch?v=8WeMEYUhAow

The annual report highlighted some shocking information about the

age that people with a learning disability are dying – you can see
the film they produced about the annual report here:
https://www.youtube.com/watch?v=-fXylKY-jQs

Oxfordshire are producing their own annual report, and families left
the meeting resolving to ask their local area to produce their own
annual report into the deaths of people with a learning disability.
There have been criticisms about reviews being added on to
stretched workloads because of restricted NHS funding but
reviewers are gaining momentum, pace is increasing and data is
coming through.
 It is important that families keep an eye on the LeDeR work locally.
In some areas it is a permanent agenda item on the Learning
Disability Partnership Board where families can keep asking the
questions.
• Blog written by Kate Dolan for INQUEST who have published it
on the Open Democracy Shine a Light investigative journalism
website. https://www.opendemocracy.net/shinealight/kate-
dolan/my-sister-life-cut-short

• Families getting access to legal aid at inquests.

The Government is reviewing legal aid and sentencing. You might
wish to write to your MPs about it or raise it in other forums as well.
https://www.gov.uk/government/publications/post-implementation-
review-of-laspo

• Ndti have been working on a project looking at the Carers Journey

and seeing how Local Authorities are doing. In the next few weeks
they will be producing a guide for families about getting the best
from their Local Authority. https://www.ndti.org.uk/tags/Carers-
Journey

3. Resources at HfT

HfT have a range of information and support for family carers through
their free National Family Carer Support Service (FCSS). They have
recently recruited a part time family carer to this team.
They offer one to one support by phone, email and letter. Run
workshops so you can find out about things that matter to you as family
carers and develop resources about the issues and legislation that affect
you. You do not need to be accessing Hft’s other services in order to
benefit from FCSS.
For more information go to: https://www.hft.org.uk/our-services/family-
carer-support-service/
 4. Family Engagement Worker post at Learning Disability
England (LDE)

Great to see LDE recruiting for a family engagement worker. For more
information about the role they will undertake go to:
http://www.learningdisabilityengland.org.uk/news-blog/

5. Policy & Practice Update

Carers Action Plan

The Carers Action Plan 2018-2020 sets out the Government’s plans to
improve support for carers in England over the next 2 years. It draws on
the responses to the 2016 Carers Strategy - Call for Evidence. It
broadens the definition of carers beyond the Care Act.
There are 64 actions across 5 priority areas:

• services and systems that work for carers

• employment and financial wellbeing
• supporting young carers
• recognising and supporting carers in the wider community and society
• building research and evidence to improve outcomes for carers

To see the full report, go to:

https://www.gov.uk/government/publications/carers-action-plan-2018-to-
2020

The Learning Disability Improvement Standards for NHS Trusts

The standards have been developed with a number of outcomes created
by people and families – which clearly state what they expect from the
NHS. By taking this approach to quality improvement, it places patient
and carer experience as the primary objective, as well as recognizing
the importance of how the NHS listens, learns and responds in order to
improve care. There are 4 standards which include:
• respecting and promoting rights
• inclusion and engagement
 • workforce
• learning disabilities service standard (aimed solely at specialist
mental health trusts providing care to people with a learning
disability, autism or both)

To find out more go to: https://improvement.nhs.uk/resources/learning-

disability-improvement-standards-nhs-trusts/

Disability Rights UK – 10year PIP reviews for people with the most
severe health conditions
New guidance coming into effect this summer means that people
awarded the highest level of support under PIP – and where their needs
are expected to stay the same or increase – will receive an ongoing
award of PIP with a light touch review every 10years. See:
https://www.disabilityrightsuk.org/news/2018/june/ten-year-pip-reviews-
people-most-severe-health-conditions

6. Holidays and Travel

If you are thinking about getting away over the summer months this
holiday guide from HfT may be helpful. https://www.hft.org.uk/our-
services/family-carer-support-service/fcss-updates/holiday-information-
guide/

You may also have seen in the press recently that Transpennine trains
were going to be reducing the number of wheelchair accessible
carriages they had on their services. This decision has been challenged
and is not being taken forward, so you should not find reduced
accessibility on their services. For more information go
to: https://www.disabilitynewsservice.com/transpennine-performs-sharp-u-
turn-on-train-access-after-protest-threat/

7. Community Room availability

There are community rooms available either free of charge or for a

minimal cost at some John Lewis stores and community fire stations. If
you are a group of families looking for somewhere to meet up these may
have something to offer you. Check out what is available at these
locations near you.

8. North East and Cumbria Learning Disability Network

Stan Cooke continues to be the family carer representative on the North

East & Cumbria Learning Disability Network. The update below on the
work of the Network has been provided by Judith Thompson, North East
& Cumbria Learning Disability Network Manager & Assurance Lead.
Diabetes
We are about to start a joint piece of work with the diabetes network
tackling inequalities and diabetes in people with a learning disability. We
are at the very beginning of the work and a scoping workshop is taking
place with people with learning disabilities, families, providers and
professionals across learning disability and diabetes services. The event
is being co-chaired with a self-advocate from Your Voice Counts. This
will be a major programme of work for the next 3 – 5 years after the
workshop we will identify our key priorities and develop our work plan
and identify stakeholders.

Children & Young People

We are developing an accessible online tool where the primary audience
will be families of children and young people. Elements will also be
suitable for children and young people themselves and adults. Some of
the content we anticipate being part of the tool is:
• information around a learning disability and what it means
(particularly for those families who have recently been informed
their child has a learning disability)
• the different levels of learning disability, mild, moderate and severe
• tips around common issues such as constipation, sleeping, eating,
epilepsy, mental health and behavior seen to be challenging etc.
The App will be quite broad and will point people to where they can find
more information about their Local Offer. It will be very interactive and
show how people can live a happy and positive life. There are 2 family
carers on the panel to decide who the online developer will be. This will
be decided mid-July, and they will remain members of the design team
going forward.

Workforce
We are currently piloting some Children and Young People early
intervention and prevention work in Cumbria alongside other
stakeholders we are working with families across the county to develop
a parent carer strategy. We have employed 4 parent carer facilitators
(who all have children with a learning disability, autism or both) in
relation to the Early - Positive Approaches To Support (EPATS) element
these facilitators will connect to families across the county and train
them in EPATS. We are working collaboratively with Carlisle Mencap as
the liaison/connectors to local families.

Cancer project
Our improving access to cancer services for people with a learning
disability conference is taking place on the 21st January 2019. It is open
to families, people with learning disabilities and professionals. The event
will be looking over what the project has achieved, what still needs to be
done and where we need to focus on the next 18 months. People can
book a place here: https://www.eventbrite.com/e/sharing-learning-
saving-lives-improving-cancer-services-for-people-with-learning-
disabilities-tickets-46180985571

The network continues to be committed to involving people with a

learning disability, autism or both and family carers in the work it does.

We hope you have found something useful from this update.

If you would like to contribute to the information we share through this
quarterly update, please get in touch with us.

Regards
Kirsty & Lucy
kirsty@inclusionnorth.org (07539063467)
lucyvirgo@inclusionnorth.org (07944185771)