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Learning Disability Partnership Board
Sovereign Harbour Yacht Club
21 September 2018
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People who were at the meeting
Sonia Reed Co-Chair and Involvement Matters Team Debbie Endersby Co-Chair Graham Oliver Involvement Matters Team Dominic Steel Involvement Matters Team Sarah Gordy Involvement Matters Team Daniel Randall-Nason Involvement Matters Team Luke Dixon Linden Court Tim Henry St Nicholas Centre, Lewes Tim Sully Involvement Matters Team Jeanette Gallivan-Young Adult Social Care Richard Lewis Adult Social Care Leigh Prudente Adult Social Care Brian Clifford Adult Social Care Carla Stevens Adult Social Care Emma Ryman Adult Social Care Ryan Harris Adult Social Care Andrew Phillips Parchment Trust Angie Simons Hastings and Rother EHS and HWLH CCGs Anji Hatcher Hastings and Rother CCG Danny Connolly PohWER Erica Pope Hastings and Rother CCG Gary Walsh Disability Pride, Brighton Jenny Skelton Disability Pride, Brighton Kevin Strath Community Learning Disability Nurse Mel Smith ESSL Michelle Kruschandl SPFT Sharon Clare Southdown Housing Association Liz Plowright Adult Social Care, minute taker
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People who were not at the meeting:
Jean Duffy - Acute Liaison Nurse Learning Disabilities Mikey Reynolds - IMT Ruth Mowbray - IMT Toby Evans – IMT
Welcome and Introductions
Sonia and Debbie welcomed everyone to the meeting
Minutes of the last meeting and matters arising
Debbie said sorry because the previous minutes were not yet posted on the East Sussex Learning Disability website, but will be available soon.
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Update from the Involvement Matters Team
Sonia has completed her food safety and
handling Level 2 and showed everyone her
certificate. She got 93%!
Graham is looking forward to starting the Green
Gym’ again, Graham told us that this involves
working outside and helps him keep active.
Sonia helped Graham to make contact again
with the Green Gym doing a search with her
new Ipad.
Tim has been busy and enjoyed going camping
twice although it rained!
Dominic has joined the Hate crime reference
group with the Foundation for people with
learning disabilities, along with Sonia and
Graham. Dominic is taking over from Tim who
unfortunately won’t be able to come along
anymore, but was thanked for the fantastic
contribution he made to the project.
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Daniel continues to work at the charity shop and
told us that he has recently been to the proms in
London.
Sarah spoke at the United Nations Human
Rights Office in Geneva for World Downs
Syndrome Day 2018! She told them what she
brings to her community – everyone watched a
clip of Sarah’s speech which was fantastic!
Sarah is receiving an MBE which is a special
award from the Queen on November 7th -
Sarah
will be the first person ever with Downs
Syndrome to get an MBE! Sarah will also
receive an honorary doctorate in December
from the University of Nottinghamshire.
Sadly, not everyone from IMT could join us
today, however Ruth, Toby and Mikey wanted
us to share:
Toby continues to work 3 days each week at
Wilko’s
Ruth has started Slimming World and has been
helping out on their stall
and Mikey’s band, Delta 7 have an album
coming out in October!
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IMT have co-delivered three training sessions
with Tania Hudson, Learning Disability training
consultant, and are due to attend another next
week. IMT have developed an easy-read
training evaluation form and have received
some good feedback from the training.
IMT have been working with National Trading
Standards about Scams awareness and want to
raise awareness of this important information
within the learning disability community in East
Sussex and further.
The National Trading Standards ‘Friends
Against Scams’ training has been developed on
the recommendation of and with the support of
IMT. The training has been made more
accessible for people with learning disabilities
(and features Sonia doing the voiceover!) - It is
in the final stages of being developed and will
be made available and shared nationally on the
National Trading Standards website. IMT will
show the training at a future Learning Disability
Partnership Board and would like to deliver
training sessions to raise awareness locally.
The Learning Disability Local Network meeting
was held during Learning Disability week in
June which had a Health focus. The meeting
was well-attended with interesting information.
We are looking to develop our Local Network
meetings to become a Community of Practice.
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Update on Safe Places – all 17 libraries across the county are now a 'Safe Place' for people with learning disabilities.
The Safe Places scheme helps people with learning disabilities deal with any issues that happen whilst out and about in the community.
Organisations sign up to the scheme and people with learning disabilities carry a card with emergency contact details, the staff in the Safe Place venue will be able to assist a person with learning disabilities if they feel frightened or something goes wrong and they need help.
Safe Place scheme information and ‘I need help’ cards were sent out across the county to services in July.
IMT were contacted by the University College
London and asked if we would be happy for
them to use our ‘There’s more to me than LD!’
videos in their STORM programme.
STORM is a new group programme at
University College London, it stands for
"Standing up for Myself" and aims to help
people with learning disabilities feel good about
themselves and speak up for themselves. The
university is also looking at Stigma, this is when
due to a lack of knowledge and understanding
about learning disabilities, people can have
negative attitudes and behaviours towards
people with learning disabilities.
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As part of the programme, they used videos to
show ways in which people may respond to
negative treatment from others.
One way to respond to negative treatment from
others would be to produce a video or film
speaking up for yourself and educating the
public about learning disabilities. UCL came
across the “There’s more to me than LD!” series
and felt that this was a great example of what
they were trying to show.
They liked all of the videos, but felt that
Dominic's in particular gave a strong message
about challenging attitudes.
The programme has been a real success and
all groups taking part reported really enjoying it
and feeling more confident in standing up to bad
attitudes and actions. and as a result, UCL are
developing STORM further and have applied for
funding for a larger trial. If this is successful,
IMT will be involved further with the programme
and research.
IMT were invited to the UCL to discuss the
programme, the photo shows IMT at St.
Pancras station in London on their way to UCL.
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Sonia talked about Automata on the pier
(mechanical things that move), these were
presented alongside work made by the local
Craftivist Network in an exhibition on Hastings
Pier. Sonia and Jeanette went to represent IMT
at the opening of the exhibition.
Some of the work displayed was by Hastings
and Bexhill MENCAP and the Parchment Trust
– the pic shows Sonia with the Parchment Trust
display which she helped to make.
Sonia and Ruth represented IMT at the Safer
People, Safer Places event in June and IMT are
working with the Safeguarding Development
Team on an easy read version of the ‘Making
Safeguarding Personal’ leaflet which will be
available soon.
IMT have been working closely with the
Learning Disability Primary Care Liaison project.
Easy read information has been developed and
agreed for use at GP practices across Hastings
and Rother. The easy read information is about
Annual Health Checks - an easy read invite
letter has been developed, as well as an Annual
Health Check Preparation support document
which can be used to get the best out of your
appointment.
IMT have also acted as a reference group for
easy read information and will continue this role
with Angie Simons for the LeDeR project.
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Jeanette gave information on some current
health campaigns. These included Mencap’s
Treat Me Well, Dimensions ‘My GP and Me’,
along with the Learning Disability Improvement
Standards for NHS trusts.
IMT are keen to continue working together with
healthcare professionals to raise awareness of
the health issues affecting people with learning
disabilities and to reduce health inequalities.
IMT want to make sure that they include Health
as a priority in their new action plan for 2019 –
2021.
IMT have some ideas, but asked the group to
tell us their ideas and suggestions, IMT asked
attendees to write their ideas on the Health
poster.
LeDeR
Debbie said that this was a difficult subject for
people to hear and talk about and if anyone felt
uncomfortable, they could be supported to
leave the meeting until the presentation had
finished. IMT have been offered support by
Angie and Erica to understand LeDeR and
what it means. LeDeR is the Learning
Disability mortality review; the report told us
that people with learning disabilities can die
earlier than people without a learning disability.
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The Government has asked the NHS to
investigate all deaths of people with learning
disability. This project is called LeDeR and is
working to reduce health inequalities
You can read an Easy-Read version of the report here:
https://www.hqip.org.uk/wp-content/uploads/2018/05/LeDeR-annual-report_Easy_read.pdf
There is also an accessible video that you
can watch about the LeDeR Programme,
this was shown to the group:
https://www.youtube.com/watch?v=-
fXylKY-jQs&feature=youtu.be
Once the 2nd
annual report by LeDeR is
published, the film will hopefully be updated.
Angela gave an overview of LeDeR and work in
East Sussex since September 2017. 47 Deaths
in total have been notified
6 Reviews in process, 6 completed so far, 18
yet to be allocated
Approximately 45 reviewers (some with a
learning disability) have been trained in East
Sussex. This is also being looked at nationally
and they would like to set up some paid
reviewers. There is also a steering group to
discuss recommendations of completed
reviews.
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Recommendations made include:
More: Training / Awareness
Better: Sharing of information
Improve: communication and transition
pathways
Increase: Annual Health Checks
Angela told us that within the NHS 10-year plan,
Reducing Health Inequalities for people with
Learning disability has been named as one of
the top priorities and there is new guidance
Hospital provision of reasonable adjustments for
people with learning disabilities.
Angela gave details of how to report a death of
someone with a learning disability and the
notification system, anyone can contact online
or by phone:
https://www.bris.ac.uk/sps/leder/notification-
system/ or 0300 777 4774
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Getting good healthcare
Erica and Angela work as part of the Learning Disability Primary Care Health Liaison Team. Primary Care means GP Surgeries. It is called Primary Care because it is probably the first place you would go if you are ill. Unfortunately Jean couldn’t come along to today’s meeting as planned, so Erica explained that Jean works in Secondary Care. This means hospitals like Conquest and Eastbourne District General Hospital. It is called Secondary Care because you would go there after seeing a GP for a referral. Jean can help you with planned outpatient appointments, planned stays, or if you have to be admitted in an emergency. Everyone is working together on trying to reduce health inequalities for people with learning disabilities. Erica, Jean and Angela would like to find out what it is like for people with learning disabilities to access Primary and Secondary Care, they can then tell people how to make it better! The meeting were asked to think of their experiences and about ‘reasonable adjustments’ (a reasonable adjustment is a simple change that makes it easier for people to access healthcare; for example, Easy Read information or a longer appointment.) and what could make it easier to access healthcare. The following points were made:-
Explain procedures fully at medical
appointments beforehand.
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Don’t use jargon.
Don’t talk to colleagues or anyone attending
with the person with a learning disability,
rather than to the person themselves.
Difficult to get GP appointments and
appointments not long enough and
sometimes restricted to one ailment.
Difficulty in finding your way around a
hospital, suggested following a coloured
line as in the Eastbourne hospital.
Provide easy read documents of the
appointment details and a map beforehand.
Volunteers in hospitals to help people.
Mobile access units would be useful.
Improve signage in hospitals, include
pictures
More co-ordination is needed for those with
Complex and multiple health issues
Designated areas for specific health needs
The information and suggestions will be written up and shared with Jean Duffy and the Learning Disability Primary Care Liaison Steering Group.
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Learning Disabilities Hate crime: a life without fear
Sonia, Graham, Dominic, Tim and Jeanette have been working with the Foundation for people with learning disabilities (FPLD) as part of their advisory group on Learning Disability Hate Crime. IMT reps talked about how two years’ work on this project resulted in them going to the House of Lords on 12
th September with the FPLD asking
for a call for collective action on Learning Disability Hate Crime. IMT worked together with the FPLD on a report called ‘A Life Without Fear?’. Tim and Dominic read out the main recommendations from the report. Pictures of the visit to the House of Lords were shown to the meeting and they described what happened during the visit. The message is there is no place for Learning Disabilities hate crime. Work will continue with the FPLD to implement the recommendations. Jeanette mentioned the link for the reports and further information can be found on the FPLD Website here: https://www.mentalhealth.org.uk/publications/life-without-fear-easy-read and on the East Sussex Learning Disability Partnership Board’s Facebook page.
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Disability Pride
Jenny Skelton is the founder and chairperson of Disability Pride. Jenny told us that she has a daughter with a disability called Charlie and talked about an experience when she and her daughter were asked to leave a pub in Brighton. Jenny’s daughter ducked down when there was a loud burst of music and the barman asked them to leave. Jenny tried to explain that her daughter had a disability and about the Equality Act but the person would not listen and were told they had to go. Jenny shared her experience on Facebook and she was met with huge support from all over the world. Jenny decided to set up Disability Pride in Brighton to raise awareness, challenge disability discrimination and celebrate people with disabilities. Disability Pride has been a huge success and Jenny showed the group a video taken at the event. Sarah Gordy from IMT said that she opened Disability Pride last year and was very excited to be involved is such a great event. The Disability Pride committee is formed of disabled people who make all the decisions. There is also a lot of support from the council and other organisations like the Big Lottery Fund and Brighton and Hove buses. Jenny would like to set up a Disability Pride in London and across other cities. Every person and organisation should have disability awareness training to prevent discrimination. Disabled people should feel included and inclusive in society and not be made to feel different to anyone else.
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My tablets and me
Kevin Strath is a Community Learning Disability Nurse. Kevin talked about Medication and what you need to know. Kevin gave examples, such as what foods you need to avoid. Kevin handed round some useful information about Medication and advised where to get help if you need more information. Key points: Medications should be discussed at least once a year, including at your annual health check. Everyone with a learning disability should be having their Annual Health Check. Easy read versions of medicine leaflets and other information can be obtained from easyhealth.org.uk.
STOMP
Erica spoke about STOMP, which is a national campaign by the NHS. STOMP stands for ‘Stopping the Over Medication of People with learning disabilities and/or autism’. Erica introduced Michelle Kruschandl, a local pharmacist that the Learning Disabilities Primary Care Health Liaison Project are working with to check if people are on the right medication and if it is the right dose. Medicines can have side effects so if they can be stopped or reduced, it can actually make people feel better! Some people with learning disabilities do not need some of their medication anymore or are over-medicated which is why it is so important to review what medication you are taking on a regular basis.
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A video was shown where Carl Shaw, Learning Disability Adviser at NHS England talks about STOMP, this can be seen on YouTube here: https://www.youtube.com/watch?v=1Q8mISFVhps Michelle told us that she is doing a trial study in Bexhill-on-sea. Michelle gave details of the work she has been doing to help check that people with learning disabilities are on the right medication and not over medicated. Michelle explained that some people may be taking prescribed medication they no longer need. Some medication can have side-effects, and can cause severe health risks if taken long-term, by checking regularly that you are on the right medication, these can be reduced or stopped. Carers and providers of services for people with a learning disability should ask for the person with learning disabilities’ medication to be reviewed in detail at the annual health check. This is everyone’s right and a review can be requested at any time by making a GP appointment or asking at your pharmacy. During a medication review, the person should be asked if they want to keep taking the medication they are on and the medication should be explained clearly in a way that can be understood and any side effects discussed. At the moment, the work that Michelle is doing is only in Bexhill, the LDPB felt that it would be of benefit if available across the county. Discussion is taking place with NHS England and national teams about funding. Funding might be available
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from the Transforming Care Programme or other sources. LDPB members felt that this was very important work and wanted to show their support. A letter of support from members for this work will be completed and sent to NHS England.
ANY OTHER BUSINESS Debbie thanked all the presenters and everyone who participated in this meeting. Anyone who has any comments or feedback on this meeting or ideas for a future meeting should contact the Learning Disability Partnership Board on: [email protected]
