Transforming Care Share & Learn Webinar - 24 May 2018

1. www.england.nhs.uk 24 May 2018
Transforming Care
Share and Learn Webinar
#TransformingCare
Topic One: STOMP – Promoting,
Pledging and Progress to date
David Gerrard, Pharmacist Lead
STOMP Programme, NHS England
Topic Two: Putting patients and
people at the heart of what we
do
Maggie Morgan Cooke and Ursula
Turner, Sustainable Improvement
Team, NHS England

2. STOMP
Stopping Over
Medication of People
with Learning
Disabilities, Autism
or both
PROMOTING
PLEDGING AND
PROGRESS TO
DATE
Webinar 24 May 2018
Dave Gerrard

3. www.england.nhs.uk
INTRODUCTION
• Part time joint pharmacist
lead with the STOMP team
• Part time pharmacist within
two learning disability
community teams in an
NHS trust
• STOMP awareness
• STOMP clinics

4. www.england.nhs.uk
AIMS OF TODAY
• To raise awareness of
STOMP goals
• To make it accessible
• To give a progress report
TWO years on
• To outline what pledges are
available and why
• To detail what will happen
over the next year

5. www.england.nhs.uk
The Goals of STOMP
1. Improve the quality of life of children, young
people and adults with a learning disability,
autism or both, who are prescribed
psychotropic drugs.
2. Make sure people only receive these drugs for
the right reasons and in the right amount
3. Improve understanding of these drugs and
when they should be used.
4. Improve understanding of non-drug treatments
and support which may help.
5. Make sure that people work with their doctor
and the people who support them in making
any changes to treatment.

6. www.england.nhs.uk
The STOMP Pledge 2016
The STOMP pledge was signed in June
2016 by:
• Royal Colleges of Nursing,
Psychiatrists and GPs
• Royal Pharmaceutical Society
• British Psychological Society
• NHS England
• Challenging Behaviour Foundation
• The Minister Alistair Burt
• Launched via Learning Disability
Senate
They pledged to work together to take
real and measurable steps to stop over
medication.

7. www.england.nhs.uk
Clear Commitments
• Provide information about
STOMP
• Work with carers/family
• Identify correct diagnosis
• Holistic treatment
• Monitor outcomes regularly
• Best practice with consent
• Carry out audits
• Support national surveys
• Develop training for ALL
prescribers

8. www.england.nhs.uk
Pledge for social care providers
A pledge for social care
providers led by VODG was
launched in May 2017
Already, more than 150
organisations have signed up
who support over 40,000
people. The pledge includes a
self-assessment and planning
template. Available at
https://www.vodg.org.uk/campai
gns/stompcampaign/
A best practice guide produced
by the Care Management Group
(CMG) was launched on June
13th by Normal Lamb, MP
www.england.nhs.uk/stomp

9. www.england.nhs.uk
• STOMP Pledge for Social Care
• Stopping the overmedication of people with a learning disability, autism or both (STOMP)
• It is estimated that on an average day in England between 30,000 and 35,000 people with a learning
disability, autism or both are taking prescribed psychotropic medication, with serious potential side effects,
without clinical justification. This is often despite evidence-based alternatives being available.
• This is unacceptable and we commit to acting in the best interests of the people we support at all times by:
• Actively promoting alternatives to medication, such as active support, intensive interaction or positive
behaviour support.
• Ensuring the people we support, and their circle of support, are involved in decisions about their care,
including their medication.
• Ensuring all staff have an understanding of psychotropic medication, including its main uses and side
effects.
• Encouraging staff to speak up if they have a concern that a person we support may be overmedicated.
• Maintaining accurate records about the health, wellbeing and behaviour of the people we support.
• Supporting people to have regular reviews of their medication.
• Monitoring the use of psychotropic medication.
• Working with people with a learning disability, autism or both, their families, health professionals,
commissioners and others to stop overmedication. This includes working closely with prescribers.
• We will set out the actions we will take and report annually on the progress we have made.
• The term “psychotropic” refers to medication which results in alterations to perception, mood or
consciousness.
SOCIAL CARE PLEDGE

10. www.england.nhs.uk
Social Care Toolkit

11. www.england.nhs.uk
HEALTHCARE
PROVIDERS
• Build on previous pledges
• Open invite to ALL providers
– NHS and private sector
• Developed with experts,
carers and families
• Small working party
• Clear commitments and
actions
• Launched April 2018

12. www.england.nhs.uk
Pledge for Healthcare Providers
• Actively promote evidence based alternatives to medication
• Empower people with a learning disability, autism or both and their circle of support to be
actively involved in decisions about their care including the use of medication
• Ensure all staff within the organisation have an understanding of psychotropic medication.
Why it is being used and likely side effects
• Empower all people to speak up if they have a concern that someone is being overmedicated
• Maintain accurate records about a person’s health, wellbeing and behaviour
• Ensure everyone receives the correct monitoring if taking psychotropic medication together
with a regular review of benefit and side effects in line with the relevant NICE guidance
document
• Work in a supportive manner with people with a learning disability, autism or both, their
families, care teams, healthcare professionals, commissioners and others to prevent over
medication. This includes working collaboratively with primary care colleagues
Sign up to the healthcare provider pledge at - ADD LINK

13. www.england.nhs.uk
WHAT HAPPENS NEXT?
• Invite all Healthcare
providers to sign up
• Promote all pledges via
networks
• Link the pledges together
• Challenge about people’s
actions and commitments
• Share experience
13

14. www.england.nhs.uk
Your Actions WHAT ELSE DO THE TEAM DO?
• Promote training – MOOC
• Attend Learning Disability
Senate
• Work with GPs to provide a
STOMP toolkit
• Work with commissioners
• Link with CQC
• Work with experts through
experience and family groups
• Attend conferences and
events
• Provide guidance and support
14

15. www.england.nhs.uk
Your Actions WHAT CAN YOU DO?
15
• SOCIAL CARE STAFF
• Has your organisation
signed the pledge?
• Have you received
medication training?
• How do you support
someone visiting their
doctor?
• HEALTHCARE STAFF
• Check your professional
website
• Has your organisation
signed the pledge?
• Share experiences of
STOMP
• Raise awareness

16. www.england.nhs.uk
Your Actions WHAT CAN YOU DO?
16
• EXPERTS+FAMILY
• Seek advice and
support
• Share experiences
• Challenge your Doctor
and care team about
STOMP
• NEVER stop medication
without talking to your
doctor for advice and
support
• PRIMARY CARE STAFF
• Become STOMP aware
• Reach out to specialist
providers
• Know the numbers
• COMMISSIONERS
• Become STOMP aware
• Commission STOMP
approved services

17. www.england.nhs.uk
Resources
17
The following links are to resources that may be useful as
part of the action planning process. They are not
exhaustive but act as a useful starting suite of additional
information.
General STOMP Awareness
NHS England STOMP page provides accessible information
for patients, families and carers about STOMP
https://www.england.nhs.uk/learning-disabilities/stomp
Derbyshire Healthcare Trust have produced a number of short
introductory videos about STOMP
https://www.youtube.com/playlist?list=PL4shZXQ9YqmIF
PJX02IWJvhHqdrMf_EkO
Psychotropic Medication Guidance
The National Institute for Health and Care Excellence issues
advice, guidance and standards on a wide range of topics
relevant to health and social care. You may find the following
resources particularly helpful:
Psychotropic medicines in people with learning disabilities
whose behaviour challenges
https://www.nice.org.uk/advice/ktt19
The Royal College of Psychiatrists has produced practice
guidelines on psychotropic drug prescribing for people with
intellectual disability, mental health problems and/or
behaviours that challenge
https://www.rcpsych.ac.uk/pdf/FR_ID_09_for_website.pdf
NHS England has produced a toolkit for General Practitioners
https://www.england.nhs.uk/publication/stopping-over-
medication-of-people-with-a-learning-disability-autism-or-
both/
The National Institute for Health and Care Excellence (NICE)
have produced specific guidance in relation to medication use
linked to behaviour thought to be challenging
https://www.nice.org.uk/guidance/ng11/resources/challen
ging-behaviour-and-learning-disabilities-prevention-and-
interventions-for-people-with-learning-disabilities-whose-
behaviour-challenges-1837266392005
The Voluntary Organisation Disability Group (VODG) has
developed a Checklist for people to use to prepare for a
psychotropic medication review
https://www.vodg.org.uk/wp-content/uploads/2017-VODG-
Preparing-to-visit-a-doctor-to-talk-about-psychotropic-
medication.pdf

18. www.england.nhs.uk
Resources continued
18
Alternatives to Medication
The British Psychological Society has produced a
leaflet explaining the use of non-medication
methods of managing behaviour thought to be
challenging [ADD LINK]
The British Institute of Learning Disability have
produced a video about Positive Behavioural
Support
http://www.bild.org.uk/capbs/pbsinformation/intr
oduction-to-pbs/
The challenging Behaviour Foundation have
produced a useful medication pathway for patient,
carers and family members [ADD LINK when live]
Other STOMP Pledges
Several Royal Colleges and professional
organisations have signed a STOMP pledge and
have produced specific commitments for all their
membership. The Royal College of Psychiatry have
highlighted 10 STOMP commitments.
http://www.rcpsych.ac.uk/pdf/STOMP_Faculty_P
sychiatry_Intellectual_Disability_(002).pdf
The Voluntary Organisation Disability Group
(VODG) have developed a Social Care Provider
Pledge https://www.vodg.org.uk/wp-
content/uploads/2017-VODG-STOMP-
PLEDGE.pdf

19. www.england.nhs.uk
ANY QUESTIONS
19

20. Putting patients and
people at the heart
of what we do
Maggie Morgan Cooke and Ursula Turner,
Sustainable Improvement Team, NHS England
Transforming Care Programme
May 2018

21. Involving patients, families and
carers at every stage
And then in July 2015…….
‘The involvement of patients, carers and the public in shaping and
improving the way in which services are designed, delivered and
improved is crucial’.
NHS Constitution
Once upon a time way back in 2005 there was the Modernisation
Agency which produced the
The Improvement Leaders’ Guide-Involving patients and carers
“Every single person is enabled, encouraged and capable to work
with others to improve their part of the service”
Discipline of Improvement in Health and Social Care

22. Learning Disability Advisors
Everyone can take a lead:
• Win-win situation – everyone benefits,
especially the people we serve
• Keeping up the pressure to be inclusive
• Listening and learning
• Sticking to our commitments and meeting the
challenge head on

23. The Massive Open
Online Course (MOOC)
using the power of pictures to get
the message across on
Transforming Care for people with a
learning disability, autism or both

24. And this is what the ‘I’ Statements of the
Service Model say….
The ‘I’ Statements
• I have a good and meaningful everyday life.
• My care and support is person-centred,
planned, proactive and coordinated.
• I have choice and control over how my health
and care needs are met.
• My family and paid support and care staff get
the help they need to support me to live in the
community.
• I have a choice about where I live and who I live
with.
• I get good care and support from mainstream
health services.
• I can access specialist health and social care
support in the community.
• If I need it, I get support to stay out of trouble.
• If I am admitted for assessment and treatment
in a hospital setting9 because my health needs
can’t be met in the community, it is high quality
and I don’t stay there longer than I need to.

25. Easy-read in Leeds 2017
Robin Meader - artist

26. MOOC illustrations
- what did Robin think about
taking part?
And what do you like most about doing
MOOC, Robin?
I like drawing illustrations to go with
their workshop project, because it helps
them to help other people with learning
disabilities to understand or who don’t
understand complete language, that
they would like to learn how to look at
pictures, help them understand inside
their minds what they really want to do
in the future.
And why is that important?
Because a lot of people stay
in these like long care
services and they want to get
out of these long care
services. And they also want
to go out and have a life of
their own, and try and enjoy
things a lot easier.

27. The MOOC illustrations
• Robin goes through each module of the MOOC
in detail - listening to the presentations and
watching the videos to understand the key
themes
• He then produces a set of drawings that
represent the main points of the module as he
sees it
• They capture issues from the perspective of the
actual person
• These will be brought together as a sum-up
section of the MOOC

28. 28
The MOOC illustrations

29. #TransformingCare campaign
• 519 tweets
• 4.74 million impressions
since 17 July
• The top ten tweets gained
63080 impressions (number of times people
saw the tweet)
• And 1514 engagements (number of times
people liked, replied or re-tweeted)
• Sets of cards for NHS England and NHS England
SI printed
• Emphasising the High Impact Actions and
linking on face-book to SEND (Special
Educational Needs and Disability) group

30. What next….
Postcards as part of the
#TransformingCare campaign

31. EXPO & the banner stands
Plenty more drawings
from Robin on
personalisation,
leadership,
measurement, shared
purpose, that can be
used more widely and
already being used as
part of the training for
STOMP

32. Launch of animation – ‘Realising
Jim’s dreams’
Voiced by one of NHSE Learning Disabilities advisors -
Katie Matthews

33. The future for Robin………
“I’ve been learning how to do
on line drawing and its getting
a bit easier, it’s quite difficult.
I’ve managed to get myself an
Apple i-pad pro to draw
pictures- I might use them a lot
to draw pictures with the NHS,
photo-symbols and open
storytellers… for people to look
at on-line” Robin Meader
As a BiLD national conference
speaker, Robin talked about his
most recent storytelling role about
a lady called Natalie and her
journey towards employment in the
community.

34. Care
Transformed

35. #CareTransformed
case study project

36. #CareTransformed
working with learning disability
advisors

37. #CareTransformed in print

38. #CareTransformed in easy read

39. #CareTransformed on film

40. #CareTransformed on Twitter

41. “I've finally had a chance to sit down and watch all of these videos,
thank you for sending them over. I've shared two already - the STOMP
one and Martin's story - both were incredibly powerful and quite moving.
I will share all of them in the next week or so. Thank you for making my
job so much easier by sending me links, I hope you know how much I
appreciate them.
Ricky and Andy were really good at explaining how it feels, and it's so
powerful to personalise this issue - seeing both those young men speak
really hammers home how important it is - it's suddenly not just lots of
talking heads in a meeting room - this is real, and it affects real people's
lives.”
Yvonne Newbold, Author, Speaker, Trainer, World Health Innovation
Summit Ambassador Learning Disability, Autism and Families
#CareTransformed feedback

42. www.england.nhs.uk/caretransformed
#CareTransformed online

43. www.england.nhs.uk
Thank you for listening
Any Questions?

44. Title: Language and Power
Thursday 28 June 2018 (12.30pm to 1.30pm)
Guest speaker: Di Domenico, National Personalisation Lead,
Learning Disability Programme, NHS England
June webinar details

45. NHS Quality Checkers is designed and led by
people with lived experience. Want to hear more?
Register for one of the following webinars by e-
mailing Judith Knapton judith.knapton@nhs.net
• 7 June 2018 (1.30pm)
• 10 July 2018 (1.30pm)
• 13 Sep 2018 (1.30pm)
• 11 Oct 2018 (1.30pm)
NHS Quality Checkers Webinars

46. Large Scale Change Webinars
Webinar Number Subject Date & Time
N/A Virtual Academy of Large Scale
Change Induction
Thursday 24 May 2018
12:30 to 13:30
Webinar 1/6 Systems Leadership Thursday 7 June 2018
12:30 to 13:30
Webinar 2/6 Leading Large Scale Change Thursday 14 June 2018
12:30 to 13:30
Webinar 3/6 The Change Model Thursday 21 June 2018
12:30 to 13:30
Webinar 4/6 Mobilising Thursday 28 June 2018
12:30 to 13:30
Webinar 5/6 Measurement for Improvement Thursday 5 July 2018
12:30 to 13:30
Webinar 6/6 Creating & Managing Networks Thursday 12 July 2018
12:30 to 13:30
The series consists of an induction webinar, in May 2018, followed by six topic-themed
sessions in June and July 2018. You are encouraged to join all seven webinars to get the most
from the series. Please register in advance for each webinar using the links below: