2nd National Wheelchair Summit: ‘what you said, did, and heard’

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My Wheelchair, My Life Wheelchair
Summit
Report of the day
27 November 2014
@rightwheelchair

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What this report is and isn’t
This report is:
• A collection of the
inputs and outputs of
the day
• A record of what
happened on the day
• A wealth of
information, a lot of
important voices and
starting point for
considering next steps
This report isn’t:
• A commentary or
analysis of the
Wheelchair Summit
• A prioritisation of
what matters the
most
• A decision document
about what happens
next

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Calm before the storm….early arrivals and
set up

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set up

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set up
Lots of anticipation on
twitter
https://twitter.com/search?q=%23MyWheelchair

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eDigest published to coincide with the
summit
http://www.nhsiq.nhs.uk/media/2574411/edigest.pdf

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Welcome & Outline For The Day
Helen Bevan

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10.00 Video, Welcome & Outline for the day Helen Bevan
10.20 Introduction: Why we are here
Ros Roughton, Fiona
Carey and Moira
Livingston
10.35 Activity A – Using ‘Fresh Eyes’ Helen Bevan
11.05
Update from the workstreams from the first wheelchair
summit:
 Empowered service users and carers
 Holistic assessment
 Training for staff
 Use of innovation
 Commissioning and procurement
 Integration between health and social care
Karen Pearce and
Kate Smith
11.35
Learning from the eDigest and the
campaign proposal
Moira Livingston
11.45 Activity B – Where are we? Helen Bevan
12.45 Lunch & soapboxes
13.30 Why a campaign?
Baroness Tanni
Grey-Thompson
13.40 Aims for the campaign Helen Bevan
13.50 Activity C – Building the focus Helen Bevan
14.50 What is the ask for the campaign introduction Helen Bevan
14.55 The “home” groups Tony Adams
15.00 Activity D – What is the ask for the campaign? Helen Bevan
16.15 Commitment wall Helen Bevan
16.20 What next?
Fiona Carey, Nigel
Acheson, Moira Livingston
and Baroness Tanni
Grey-Thompson
16.30 Close

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Introduction – why are we here
The day starts with a short
film of stories from
wheelchair users and their
carers, describing the
central role their
wheelchair plays in their
lives and their experience
of wheelchair services,
both good and bad.
http://youtu.be/VmGYvwz51_k

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Live Polling is a feature of the day!
Poll 1

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Why Are We Here?
Fiona Carey
Ros Roughton
Prof Moira Livingston

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Ros Roughton
Explains the real issues and experiences she hears
of wheelchair users, Ros recognises:
• there’s no national data so we’ve no means to
build a consistent picture of service quality
and variation
• Acknowledges the frustration of users
Ros is determined now is the time to make a real
difference. Actions NHS England are taking:
• building a national dataset
• reviewing the financial incentives to improve
the payment system
• Making it easier for commissioners, to share
good practice of works well

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Fiona Carey
• Explains her role to of describing the journey that led to
this summit; from NHS Change Day and the personal
pledge of Sir David Nicholson.
• Describes the 1st summit, ‘unburdening’ the frustration of
wheelchair users, including:
• working with well meaning staff, but…
• …that long waits of wheelchair users are all
too common
• users often receive the ‘wrong’ chair which
causes complications, adding to the costs of
the NHS
• That wheelchair users often have to put
their ‘life on hold’ while they wait for the
right chair and the right time
• Acknowledges the 1st summit created 6 workstreams –
and they will report their progress later
• Acknowledges the motivation of stakeholders to get this
right…but we need to tease out the good practice so its
consistently applied everywhere
Challenge for the day: what will be different after this
summit

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Professor Moira Livingston
• Acknowledges the large audience in the
room and virtually (live stream)
• Recognises the large volume of pledges
at NHS Change Day to improve
wheelchair services
• Acknowledges previous efforts to
improve but they have been isolated,
and haven’t drawn together all parts of
the service…and that’s a critical
difference for this summit
• NHS IQ are involved because of its skills
in transformation expertise…but also the
passion of staff to make a difference for
wheelchair users

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Activity A
‘Fresh Eyes’ Report Back

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Activity A: Using “Fresh Eyes”
Aim
• During this second Wheelchair Summit, we want to think creatively, outside
of our normal thinking patterns. “Fresh Eyes” is a technique to stimulate
this.
Task
• quickly introduce yourselves then pick ONE perspective from the list of
“fresh eyes” perspectives on the sheet
• look through the eyes of that person, group or perspective to come up with
an response to the task…………..
• ‘What’s the one big radical thing that we can do from this summit to
get everyone enthusiastically working together to really improve
wheelchair services in England?’
• what perspective do these “fresh eyes” give you to this task?
• we will ask someone from your group to feedback your response to the task
in one sentence from wherever you are in the room
• You have ten minutes to complete the task

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Activity A: Using “Fresh Eyes”

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Activity A – ‘fresh eyes’
Activity A: Using ‘fresh eyes’ – Table 4
• Joined up thinking/funding
• Holistic approach & funding
• Meet social needs as well as medical
• Treat the person not the condition
• Medics raise expectations we need the resources
• Highest possible provision – raise the bar on
equality
• Speed of provision with precision
• Consistency
• High quality
• Responsive provision
• Sustainability

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• Extending lives – high quality
• More content relatives – people
lived a better quality life
• Form a collective to lobby case for
change
• Share personal experiences
to bring changes
• Be more proactively involved
in shaping end of life
services

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• Politician
• Create social awareness of how current poor
services costs the taxpayer more through
money spent on remedial surgery, pressure
sores
• People in wheelchairs services spend
working days in wheelcharis so they can
understand their needs without cheating
• From the view of the military we need to
improve focus on the individual need, by
stronger links within services and
improved/more funding

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• Travel Industry
• “We need basic education for all in the
industry, achived by all attending a Go Kids
Go Practical Skills course (http://www.go-kids-
go.org.uk/) – getting in a chair for a day.”
• Understanding users:
• Basic education – proper training
• Power points
• Honestly about issues
• Don have to ask for help
• At same cost as everyone else
• Monument – ‘historial – cast in iron – need
to evolve’
• “Take the positives forward and the
negatives in the past” to evole,
improvement.

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• Law (occupation)
• To add a clause in the Equality Act making it
mandatory to provide wheelchairs promote
independent living
• Basketball – A team approach.
• Achieve a win within short ‘game’ timescale,
an example of collaborative working, to spur
us on to greater victories
• Breaking down the barriers to access Barrier
free travel industry across the country

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• Take out the garbage!
• Timely and appropriate provision enabling
independence to function in everyday life
• Eradicate waste and duplication
• Mafia – Whose head is on the block if it
doesn’t work
• Hold people to ransom – we can get anything
done
• Strong arm tactics: combined voice as a lever
• Demand: we want this by a certain time –
penalty – “your ringers”
• With targets and can break rules to make it
right there are no barriers
• Librarian
• Encourage libraries to promote information
and signposting to wheelchair services and
host days where people can experience being
in a wheelchair

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MY VOICE,
MY WHEELCHAIR, MY LIFE
Work stream progress from the
first summit

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Karen Pearce
Director of Care
MND Association
karen.pearce@mndassociation.org
Kate Smith
Senior Commissioning Manager
West Hampshire Clinical Commissioning Group
kate.smith@westhampshireccg.nhs.uk
Lets make real and lasting change……

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Update from the workstreams
Kate Smith
• Sets out the ambitions from the first
summit, and outlines the 6 workstreams
• Describes what has happened since
March in the workstreams
• Presents a view of ‘how’ wheelchair
services should work holistically:

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Kate Smith
How will it all fit together….

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Wheelchair Programme – Steering Group
Membership: Chair (tbc), leads of each theme group, service user plus
NHS England representation
Holistic
assessment
Empowered
service users
and carers
Commissioning
and procurement
Integration of
health and social
care
Training for
staff
Use of
innovation
Leads feedback key
messages to theme
groups
Leads feedback
progress from theme
groups
Karen Pearce
Describes status from each workstream

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Karen Pearce
• Describes detailed status from each workstream,
including:
• information pack for users
• commissioning and procurement
• improve data to benchmark services
• service specification
• Review funding model
• Better integration between health and social
care
• Guidance for H&WB Boards
• Training for staff, develop the skills to support
wheelchair users and their environment
• Launch of an innovation portal to showcase
good practice

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E-digest & Proposal For The
Campaign

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eDigest published today
http://www.nhsiq.nhs.uk/media/2574411/edigest.pdf

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Learning from the eDigest and the campaign
proposal
Moira introduces the findings of the eDigest talking
about the harm, waste and delays that are
unacceptable and intolerable. To get the general
population to understand, she suggested making
the comparison to being given the wrong
prescription and this being OK. ”If the public knew
what we knew they would feel the same, that this is
unacceptable and we must act.”

proposal
The digest’s three recommendations:
• create a wheelchair leadership alliance to bring
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representatives of all key stakeholder groups under
one umbrella, to lead a collective effort in response to
this challenge
• a campaign that raises the profile of this intolerable
situation and that mobilises all involved with
wheelchair services to work collectively to make a
lasting positive change.
• a wheelchair ‘declaration’ that all services will sign up
to. This would set out what good looks like, remind us
if the rights people have and describes the
commitments services will make for wheelchair users.
• Right Chair
• Right Time
• Right Now
If we get this right,
we can reduce
• avoidable harm
• unacceptable
delays
• unnecessary waste
Ultimately we need everyone to commit to:

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Activity B
Four keys to collaboration
• Lean into discomfort
• Listen as an ally
• State your intent
• Share your “street corner”
Source: Judith Katz and Fred Miller

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Activity B:
From hearing the feedback from the workstreams and
the digest:
• What surprised you?
• What have you reflected on?
• What aspects do we need to emphasise?
– Capture your feedback on the flipchart
– Identify a person from your table to take part in a
“press conference” to share your findings
– You have 30 minutes to complete this task

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WHEELCHAIR SUMMIT: PRESS CONFERENCE
What surprised you?
What have you reflected on?
What aspects do we need to emphasise?

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proposal
Wheelchair summit: press conference

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proposal
What surprised you?
Themes that came out included:
• Existing work being done and workstreams: “Lack of information
out of work streams?”
• Recognition of problem: “Just how seriously NHS England and NHS
IQ is taking this – which is great”
• That there is no national data and aren’t clear standards of service
being applied
• Funding: No mention of cost of life of product
• Involvement of local commissioners, only 2 HWBB have prioritised
wheelchair services
• There are positives to build on
• The ‘evidence’ of good practice, ie who are they as haven’t been
really highlighted

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proposal
What aspects do we need to emphasise?
Themes that came out included:
• Need for a national response: “There needs to be whole system
change”
• We need to change the setup: reduce the number of centres –
condensed from 150 down to say 15 or a joined up network – ‘hub
and spoke’ with specialist centres of expertise
• Should be more emphasis on children – they have specific needs –
service need to be proactive not reactive
• Costs of not getting right chair eq unnecessary interventions
• We need to challenge people about their attitudes
• Making sure it is not seen as a career cul-de-sac
• What does good like like? Not just about a service but for individual
– who determines what good looks like?

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proposal
What have you reflected on?
Themes included:
• Why can’t we make this mandatory
• Unless we see a different in next 6-12 months momentum will be lost
• NHS England raising expectations but CCGS are funding delivery
• Need for national (enforced) standards of service and provision
• Little from central government about how investment will come about – where’s the commitment.
Important we have someone accountable
• The £ is sitting in the wrong place – need to shift £ towards quality/prevention of harm
• Perceptions to be challenged – young people are also wheelchair users / one chair does not fit all
• A standard chair (off the shelf) should be there in a day – this will give providers more capacity to
focus on the specialist areas
• Issue with repair services + maintenance has been cut back too far. Specification needs to include
maintenance. Need economies of scale.
•
• Wheelchair services sit in different organisations – adding complexity
• Outcome measures – difficult to come up with the right outcome measures as not ‘one size fits all’
• Move away from idea that people should just have one wheelchair that has to do everything. We
need different shoes to do different functions.
• Risk aversion stops innovation

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proposal

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proposal

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proposal

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proposal

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proposal

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proposal

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proposal

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proposal

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proposal

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proposal

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proposal

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proposal

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proposal

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Marketplace
1. Wheelchair summit workstreams
2. Liam Dwyer and Paula Moulton - User
Voice
3. NHS England activities – national data
set, tariff pilot & model service spec
4. I Want Great Care
5. Ros Roughton and Moira Livingston –
question time

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Seven Key Questions from Liam Dwyer during
the lunch time market place: we need to
consider these as we work on what we do next.
1. Is there any money available for this project?
2. Has anyone worked out how much it might
take to improve services?
3. What happens if the CCG refuse to implement
any recommendations as they have no
money?
4. How are we going to measure success?
5. How are we going to ensure changes are
sustainable and consistent across England?
6. Have housing, education, social care and third
sector partners been consulted to look at
joint working?
7. Why don't we just ask organisations to start
working with CECOPS Code for wheelchair
and seating services, especially if the main
regulators and professional bodies support it,
and it addresses all the issues we have been
discussing over the past 10 months?

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WHY A CAMPAIGN?
BARONESS TANNI GREY-THOMPSON

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Baroness Tanni Grey-Thompson

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Why a campaign?
Baroness Tanni Grey-
Thompson invited
participants to contact her
directly with their concerns
and issues about the
Wheelchair Service
greythompsont@parliament.uk

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Aims For The Campaign
Helen Bevan

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Ultimately the evidence boils down to
three things:
• Right Chair
• Right Time
• Right Now
If we get this right, we can reduce
• avoidable harm
• unacceptable delays
• unnecessary waste

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The challenge
• There is a lot of activity,
energy and evidence for
change.
• And there has been for a long
time.
• Unless that energy is
translated into right chair,
right time, right now, it counts
for nothing
• We want to provide a focus
and direction that moves
everyone in the same
direction

Recommendations
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• create a wheelchair leadership alliance to bring
representatives of all key stakeholder groups under one
umbrella, to lead a collective effort in response to this
challenge
• a campaign that raises the profile of this intolerable
situation and that mobilises all involved with wheelchair
services to work collectively to make a lasting positive
change.
• a wheelchair ‘declaration/constitution’ that people and
services sign up to. This would set out what good looks like,
remind us if the rights people have and describes the
commitments services will make for wheelchair users
Ultimately we need everyone to commit to:

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Three interconnected wheels
The 6
workstreams
Right
chair,
right
time,
right now
NHS
England
actions

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Setting aims for a campaign
Some is not a number;
soon is not a time;
maybe is not an answer

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How will we lead?
Compliance
States a minimum standard of
performance or target that
everyone must achieve
Uses hierarchy, performance
management systems and
standardised procedures for co-ordination
and control
Threat of penalties/ sanctions/
shame creates momentum for
delivery
Commitment
States a collective, meaningful
goal that everyone can play their
part in and aspire to
Based on shared purpose and
shared goals (“us and us” rather
than “us and them”) for co-ordination
and control
Commitment to a common
purpose creates energy for
delivery
Source: Helen Bevan

• Build a wheelchair declaration: power in “the act of declaring”
• Identify the people and groups that can take action and create
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an “ask” of them, including:
• Wheelchair users, their families and carers
• Clinical decision makers who prescribe and review
equipment and therapeutic interventions
• Those who can give voice and advocacy to wheelchair users
• Those who make, supply, commission, promote and ensure
best practice in wheelchairs
• Test ideas, build commitment and create content today for a
campaign launch in early 2015

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Proposed aims of the campaign
To mobilise the whole country for
• By 1st June 2015, 50% of local areas have
committed to take the actions in the Wheelchair
Declaration and are actively working towards its
goals
• By 31st March 2016, 80% of local areas have
committed to take the actions in the Wheelchair
Declaration and are actively working towards its
goals

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How can we light up the whole country?

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Interest from overseas
Aims for the campaign?

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Perspective from Whizz Kidz
https://twitter.com/WhizzKidz

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Suggested Quick WIn
You can update contact details of wheelchair
services and local user groups on the National
Wheelchair Managers forum website.
www.wheelchairmanagers.nhs.uk

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Activity C
Building The Focus

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Activity C
Answer your specific question
A chair/facilitator has been identified but other roles
should be identified
• Capture your feedback on the flipchart
• Summarise your findings on a single sheet of
flipchart paper
• Identify a person from your table to make a
one minute feedback to the whole meeting
• You have 30 minutes to complete this task

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Activity C: tables and questions
1. How do we focus the aims of the campaign? What should be the priority areas?
2. What support is needed for this next 'campaigning' phase?
3. How can we create a more positive image of wheelchair provision to the general
public?
4. What can we learn from previous grass roots campaigns that we know about to
help this campaign?
5. How can we develop the Wheelchair "Constitution" (is this the right term?) and
what should be included?
6. How do we need to develop our story to make the case compelling to engage
skilfully with different audiences and how can this be used in the most effective
way to influence change and ensure demonstrable commitment?
7. What is different now? What are we going to do differently now compared to the
last 20 years when we haven’t managed to improve things across the whole
country?

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Activity C: tables and questions
8. What can we learn from the local places that are already providing excellent
wheelchair services? How do we celebrate and share their success?
9. How could a Wheelchair Leadership Alliance take this work forward? What might it
look like? What value might it add? Who else might be involved in the Alliance?
10. How will we know when this has worked? In what ways will the service look
different to service users and staff in the next 5 years? 10 Years?
11. What can we learn from previous initiatives to apply improvement methodology
and reduce waiting times in health and care?
12. How do we focus the aims of the campaign? What should be the priority areas?
13. How can we get different groups/interests working together to achieve our aims?
What are the drivers that could support our aims and what are the perceived
barriers?
14. How could a Wheelchair Leadership Alliance take this work forward? What might it
look like? What value might it add? Who else might be involved in the Alliance?
15. From what the evidence base currently suggests what baseline measures can we
utilise and what else can be measured to give an indication of success?

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How do we focus the aims of the campaign?
What should be the priority areas?
• Get tailored messages to the right groups/target
• Unite messages and stick to a defined common plan
• Get the voice of the user to CCGs, Health and Wellbeing Boards
• Case studies ‘make it real’
• Advocacy for personal health
• Budgets and integrated with care budgets
• Describe/explain range of services
• Users call on to ensure the right threads are drawn together
• Highlight examples of good practice
• Explain the day to day challenges

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What support is needed for this next
'campaigning' phase?
• Need to ensure all 3 elements are aligned
• Different messages for different audiences
• Visual representations – infographic
• Tracking provision and repair
• Networks
• Need to get the right people in each locality in the room
• What do we mean by local area? (HWB – Key!)
• CCGs, Las, HWBs, social care, local private providers, users, BHTA’s, - conduit to all
reputable manufacturers, Health Watch
• Funding a big support service. Need to join both pots of money, health & social
care eg. Better Care Fund publicity by them
• Personal health budgets
• Need an interactive website for Wheelchair Services for basic information
• Need evidence of need, quantify waiting times
• High quality case studies
• Make it easier to access charitable funding for individuals e.g. Children in Need

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How can we create a more positive image of
wheelchair provision to the general public?
• Create the narrative!!
• Celebrate success and stop focussing on negatives
• Get broader engagement in the wider population - consider initiative child chair in a day. Went into local schools
• Shared Decision making – training for all staff in SDM. This has helped break down barriers and getting out of silos
• Increased emphasis on national wheelchair day
• “Invictus games has helped open up dialogue
• “ice bucket” challenge for MND lets consider
• “spent a day in a chair” it too could go viral!
• Trust open day for general public get people trying out chairs and pressure products
• Work with employers using open day model
• Link a publicity campaign like Radio 4 listening project
• Getting school children involved in curriculum i.e. PHSE to help de stigmatise
• “annual school report” BBC, children take over news reports
• Need high profile celebrities and ambassadors
• Social media campaign to increase awareness of #MyWheelchair
• Ask ‘3’ questions initiative
• Armed Forces as advocates to increase awareness of wheelchair users hold a ‘royal tournament’ with
veterans/wheelchair users
• Humour i.e. Johnny Vegas
• GOB files (Glibs of Brilliance)

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What can we learn from previous grass roots
campaigns that we know about to help this
campaign?
• Too localised needs to be national
• Need standard stats across whole country
• All providers have a voice. Not monopolised like previously.
• Dodgy lack of data
• Focus on positives it’s not all negative
• Investments come from ‘a fight’ for wheelchair voucher scheme
• Keep it simple
• Keep focused on the goal
• Communication is key
• Need a hook or gimmick without being patronising
• Wide not just specialist routes
• PMG are trying to get good stories out there
• Pull resources toghether and have one list of charities wheelchair related
• Wheelchairs are not an acute service but ongoing
• We enable our clients
• “Right chair, Right Time, Right Now” ??? It doesn’t tell the public anything about wheelchairs
• Learn from “ Child in a chair in a day”
• We all know it even though its not right
• Need good strapline but need the momentum behind it too
• Involve/include politicians (get them behind it)
• “5 a day” is well known

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How can we develop the Wheelchair
"Constitution" (is this the right term?) and what
should be included?
• Range of stakeholders
• Right to information
• Decent/practical assessment
• A choice rather than “solution”
• Practical/realistic targets
• Development/involvement of service user
groups

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How do we need to develop our story to make
the case compelling to engage skilfully with
different audiences and how can this be used in
the most effective way to influence change and
ensure demonstrable commitment?
• National champions, local champions, public champions – ambassadors
• Need to tell the story well:
• how is it for a person.
• WIFM for non wheelchair users – you may need a wheelchair in the future.
• Daily Mail readers: - wastage
• Guardian readers: - must be better
• Need a mix of wheelchair users full time users.
• Ambassadors and local champions
• Remove all labels
• Everyone in a wheelchair = 1.2M
• Why spend money on wheelchairs?
• Why should people care?
• Ice bucket challenge – need a viral social media campaign.

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What is different now?
• Equipment/Technology available
• More – user population increased.
• Complicated more complex clients (eg cancer care)
• (increased cost implication)
• Increased service user expectation
• Social media facilitating global communication
• Knowledge shared
• Data collection potential is increasing
• ? single national system
• Cost of complex equipment
• Now available on NHS more readily and user feels he experiences faster response
• More red tape?
• Budgets more squeezed?
• obesity

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What are we going to do differently now
compared to the last 20 years when we haven’t
managed to improve things across the whole
country?
• Benchmarking – central information
• Centralised national data collection set -> best practice
• Fed down into commissioning
• Up from service user
• Robust and accountable commissioning
• Holistic Assessments:
• health
• social
• care
• lifestyle
• Longer assessment times
• Release funding from other areas
• Speak out for hart to reach clients - ? Age UK and LD

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What can we learn from the local places that are
already providing excellent wheelchair services?
How do we celebrate and share their success?
• Define this:-
• Quantitative – output
• Qualitative – outcome
• This must be agreed.
• Now we need to know who?
• A positive process/ highlight top performers
• No structure or process currently to do this. Only have local information/feedback.
• What can we learn? – Long list but need to focus on key wins.
• Have great relationship
• Integrated as part of solution
• Included in discussion of provision – great links to commissioners and users
• Avoid duplication - minimise the redoing of work
• Howe do they measure success?
• Build a culture of success and service
• Celebrate and share success
• Need to document it
• Build on current forums
• Don’t need another vehicle
• Look for success often
• Identify heroes  build a culture of improvement, a bottom up approach.

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What can we learn from the local places that are
already providing excellent wheelchair services?
How do we celebrate and share their success?
• What does good look like?:
• Wheelchair services included in discussion on provision eg H&W boards
• Good networks
• FFT?
• National wheelchair managers forum
• Regional analysis
• Need feedback from wheelchair service users.
• Structure needed to share best practice
• Local wheelchair user forums (but isolated)
• Good:
• Output
• Reduced waiting time
• Outcome – qualitative
• What is most important to wheelchair service users
• Who why when where what
• Integrated approach
• Can gather local information – user satisfaction – but nothing to measure against so how will we know it’s good? Need
comparable areas.

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How could a Wheelchair Leadership Alliance
take this work forward? What might it look like?
What value might it add? Who else might be
involved in the Alliance?
• Personalisation
• Flexibility – complexity and cost
• Investing to save – demonstrate
• Sharing experience/innovation
• What might it look like?
• Several workstreams – CRG model
• Data – RTT (access)
• Data – outcomes
• Data – unmet need
• Design – modular
• Procurement
• Maintenance
• Training
• Who else might be involved in the alliance?
• Broad range of stakeholders
• Service users are key stakeholders
• User groups
• Children and Young people/ adults/ older people
• More active/less active
• High profile champions – but also recognition of detailed work done by many

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How will we know when this has worked? In
what ways will the service look different to
service users and staff in the next 5 years? 10
Years?
• Right chair, right time
• Staff
• Holistic assessment
• Data collection system are admin light, automated that feed other systms
• Working to join specification
• Users
• Chrstine wold be able to make one call, speak to a person know the best evidence is being used
• Treated asd an idnvidiual and feel like at the centre
• Other
• Investe to save intelligence would be really clear
• Not coming to these events
• Commissioners actually commission
• In 5 years
• Issue re wheelcharis services used to to provide restraining chair for children with behavioural difficulties should be
considered within a different context – this consumes a lot of resource (not cost of chair because might be right issue)
but assessment process
• Similar children to say oxygen needs, feed pumps etc – different assessment

102
What can we learn from previous initiatives to
apply improvement methodology and reduce
waiting times in health and care?
• Process mapping need to happen– methodologies staff and service user involvement.
• Understand variance measure
• Develop capacity withn the team to enable them to lead the improvement and continually improve their
service
• Make the right way the easy way – not complex
• Need to involve and engage everyone in the improvement
• Leadership and national commitment
• Clear purpose and role of those are involved in improvement
• Top level buy in to allow bottom up improvement
• Micro-system approach – understanding what you need to change
• Equip staff and team skills in improvement methologies
• Behaviour change – human behaviours 80% of change
• Protedcted time to do this – thrusts / orgs commitment
• Team needs to identify the needs that needs to happen and link them to number 1
• Service users look at where this has worked well and translate approach

103
How do we focus the aims of the campaign?
• This has to be a national challenge to get new ringfenced
funding to spend on
• Wheelchair services – fouce on purpose of wheelchair
services, is it medical or holistic?
• Focus on social and not just medical model of disability ie
education, mental health, employment
• Who is the audience of the campaign, who is it aimed at? We
are all committed anyway
• Where is public health in the campaign – aim is prevent ill
health

104
What are the drivers that could support our
aims and what are the perceived barriers?
• Identify key stakeholders
• Users and carers
• Providers
• Commissioners
• Voluntary orgs
• Manufactures
• Trainers
• Social care / education (LA)
• Access to work
• Motability
• Change management facilitators
• Clinicians
• Barriers
• Lack of understanding of all issues amongst all parties
• The vast number of different models and vast number of different types of contracts and provision, different stages
• Different priorities and chellenges and expectations
• Silo budgets
• Time and capacity
• Cynical / motivation to change and collaborate with others
• Commercial interests

105
How can we get different groups/interests
working together to achieve our aims?
• How
• Get everyone signed up to the aims and be clear about the aims are
• Effective communication between group members eg virtual
• Clear terms of reference to belong to leadership alliance. (role and responsibilities of constituent parts)
• Needs to be driven from the top
• Identify stakeholders
• Identify ‘local area’
• Clear terms of reference
• Effective communication
• Drivers
• Patient satisfaction / outcome
• Evidence ‘case for change’
• Reputation for providing a service
• HWBB
• Appetite and passion for change amongst many
• Appetite for change to meet patient satisfaction back up by evidence
• Barrier
• Different priorities and challenges and expectations amongst the different groups which might challenge
collaborative working

106
How could a Wheelchair Leadership Alliance
take this work forward? What might it look like?
What value might it add? Who else might be
involved in the Alliance?
• Need KPIs set by NHS England for everyone. Childre in a chair in a day is achievable – should be for
everyone. National criteria would empower commissioners
• Need to address eligibility criteria and the associated lack of funding
• Duplication of assessment (within the eligibility and needs assessment process) can cost much as the
wheelchair
• Need also to address transistions and portability of assesmsne, physio plans etc
• Need to address capacity and retention issues in the workforce (funding)
• Choice of equipment make maintenance and repairs more challenging. Need to be honest about practical
limitations but need to try and resolve this because personalisation matters.
• Information for users – lots already out there
• Joint funding – wasys forward
• We are going around in a circles
• We’re still providing wheelcharis manufactured in the 1980s. NHS chooses not to buy into innovation,
despite known onward cost-savings. EG because the wheelchair services don’t know the products and are
slow to recognise innovation in design and manufacture (but if you have lots of design / manufacturers
then managing maintenance, repairs, contracts etc becomes complex for commissioners.

107
From what the evidence base currently suggests
what baseline measures can we utilise and what
else can be measured to give an indication of
success?
• Issues of badly-done measurement and subsequenct poor specification. Eg of someone buing in a poorly-spec’ed
wheelchair and th proposed solution to widen all the doorways in their house rather than address
the fundamental issue of poor measurement
• Need to know/have:
• The end ambition – how far are we aiming to get to? Start with ideal, but then need to be pragmatic
about the perspective. But not lose drive: tricky balance
• Same funding and resourcing
• People who use wheelchairs and their families, firneds
• Charities that represent a range of perspectives
• Commissioners
• Clinicians
• Health, social care, education, housing, schools etc
• Learning from other alliances
• Stroke network
• Cancer network

108
From what the evidence base currently suggests
what baseline measures can we utilise and what
else can be measured to give an indication of
success?
1. Leadership alliance
2. Holistic
3. About more than wheelchairs, otherwise “we cement the silo”
4. Social care, housing, schools, employment
5. H+WB
6. Prevention focus
7. Independent chair – autonomy
8. Profile and awareness raising – start an honest and open conversations that recognises the public as interested
citizens and tax-payers
9. Learning from other alliances
10. Ministerial buy-in
• Current policy / practice / environment standards
• Experience (multiple elements)
• Referral to delivery
• Referral to assessment
• Waiting times
• Number of centres
• Cost per episode
• Request for reassessment
• Wheelchair related pressure ulcers
• Motability assessment
• Number of MDTs per clients
• Carer assessment / trained
• Personalisation – no different contracted by user per action
• Repair times

109
Tony Adams,
Senior Portfolio Manager NHS IQ
• Had made assumptions that accessing the right
wheelchair in a timely manner was a simple process
• Having spent the last three months looking at the issues
now know that my assumptions were, to say the least,
naïve
• Despite a lot of excellent work there are still too many
examples of poor experience and a service that is simply
not right
• But, despite this, those assumptions that I previously
had are shared by millions of the general public who
also have never had the cause to consider wheelchairs
or wheelchair services.
• Wheelchairs and wheelchair services fall below the
radar – unlike other areas, such as diabetes, that receive
a higher profile
• This highlights the needs of the campaign to make wider
public aware .
• No one group can make the changes alone. We need a
system wide approach working together to really make
that sustainable change for the long term

110
Activity D: What Is The Ask For The
Campaign?
Helen Bevan

111
Activity D
Move to your new table
The new tables represent the “home groups”
You are on this table either as
• A member of this home group
• A “critical friend”

112
Where are the tables?
• Children and adults who use wheelchairs and
their families, carers and advocates
• Commissioners of wheelchair services
• Clinicians and their representatives
• Those who provide wheelchair services
• Manufacturers/suppliers of wheelchairs
• Health and care improvement facilitators

113
Activity D
Part A:
• Using the template provided, decide what you would
like each of the other five groups to:
• Continue doing
• Start doing
• Stop doing
to achieve our goals of less delay and less harm
• Deliver this feedback to each of the other groups
Time available for part A: 30 minutes

114
Activity D
From: Commissioners of wheelchair services
To: Providers of wheelchair services
In order to achieve our collective goals of less delay and less harm, we ask you to:
Continue
doing
Start doing
Stop doing

115
Activity D
Part B:
• Review the feedback you have received from others about what your
group should:
• Continue doing
• Start doing
• Stop doing
to achieve our goals of less delay and less harm
• Using the template provided, identify:
• 4 specific actions we should be asking this group to take as part of the Wheelchair
Constitution
• Next immediate steps in getting this group organised for the campaign
• Prepare one person from your group to give a three minute feedback to
the wider group
Time available for part B: 30 minutes

116
Commissioners of wheelchair services
:
Four actions that
we should ask
people in this
group should
take to achieve
our goals
1.
2.
3.
4.
Next immediate
steps in getting
this group
organised for the
campaign

117
Children and Adults who use wheelchairs and their
families, carers and advocates.
From Commissioners of Wheelchair services
• Continue doing: Lobbying and telling us what’s
wrong and what’s right
• Start doing: be our partners
• Stop doing: masking what is unacceptable by
doing your work arounds because we start to
rely on it

118
From Manufacturers/suppliers of wheelchairs
• Continue doing: telling us your views/ not giving
up on the system
• Start doing: Giving us examples to use:
– Personal
– so we know what good looks like
– user groups
• Stop doing: re-engage if you had stopped doing
so

119
From Health and Care improvement facilitators
• Continue doing: Sharing their experiences on
what is working and what is not so good
• Start doing: asking how you can get involved
and be part of “in it at the front bringing” –
coproducing – active participants
• Stop doing: stop being patient patients

120
Four actions that we should ask people in this group to take
to achieve our goals:
• Attend appointments or cancel with enough time
• Tell wheelchair service if your needs change
• Early notification of damage/repairs needed to chair
Second group:
• Get their story right
• Get more information/research
• Share their experiences (good and bad) – participate and
share views
• Communicate with them better/clearly – using social media
and using websites eg NHS Choices.

121
• Next immediate steps in getting this group organised
for the campaign:
• Promote awareness amongst other users, carers and
advocates about this campaign/event.
• About 20 representatives at this conference of about
150 people!
• Get the user groups stronger/ a mix of people
• Connect the user groups eg email, website, somehow.
• Online Forum
• Supporting each other
• Connecting Groups = stronger voice

122
Clinicians and their representatives
From: Children and adults who use wheelchairs and their families, carers
and advocates
In order to achieve our collective goals of less delay and less harm, we ask you
to:
• Continue doing: Those providing timely services – keep going!
Keep being advocates and caring.
• Start doing: Agreed assessment/prescription that uses sign and is
transportable.
Listen to uses.
Start replicating best practice.
Service user groups.
A national service.
Provide copy of order form.
Empathy.
• Stop doing: Don’t fit square pegs into round holes.
Not treating people as individuals.
Medical model transfer to holistic model.

123
From: Those who provide wheelchair services
In order to achieve our collective goals of less
delay and less harm, we ask you to:
• Continue doing: Continue to listen.
Passionate.
Professionalism.
Continue to promote best practice
Maintain knowledge base
Working as a team.

124
From Commissioners of wheelchair services
In order to achieve our collective goals of less delay
and less harm, we ask you to:
• Continue doing: To meet holistic needs (where
you do already)
• Start doing: To start looking holistically (where
you didn’t know)
• Stop doing: Blaming the approved repairer for
everything that goes wrong.

125
From: Manufacturers/suppliers of wheelchairs
• Continue doing: Robust assessments to high standard.
Provide sufficient information on prescription for right
manufacture.
• Start doing: Help to engage with you (Talk to the trade
association).
Expand product knowledge (lean on us open door)
Open minds to different ways of funding/overcoming
silos.
• Stop doing: Stop letting budget become the overriding
factor.

126
Four actions that we should ask people in this group to take to achieve our
goals:
• Clinicians should clarify with the commissioners agreed data for collection
and be provided with appropriate IT (not a clinical role)
• Clinicians should ensure they are up to date
• Increased awareness of local and national policy direction and
implications. PHBs for example
• Find ways to maintain contact with people we serve
Second group:
• Proportionate assessment to the need
• To be able to allocate time to the most complex assessments to ensure
holistic assessment is completed.
• Approach commissioners for additional funding to provide equipment to
meet holistic need which not part of the service criteria/ specification
• effective data collection (agreed stats to be collected on a national level)

127
Next immediate steps in getting this group
organised for the campaign:
• Put yourself in your client’s wheels
• Keep working together on this

128
Providers
From Commissioners of Wheelchair services
• Continue doing: maintain your current
commitment to providing wheelchair services
• Start doing: collect two pieces of data: RTT,
Outcome measures – fit for purpose judged by
the person and clinician
• Stop doing: measuring activity by 18 week RTT
standards

129
Providers
From: Clinicians and their representatives
• In order to achieve our collective goals of less
delay and less harm, we ask you to:
• Continue doing: To communicate and
negotiate.
Trust our expertise.
Support us.
• Start doing: Start protecting budgets/budgets.
Ring fenced monies for training staff.

130
Providers
• Continue doing: Improving skills. Voucher
scheme – personal budgets.
Learn about new products.
• Start doing: Recognise manufacturers/suppliers
are solution providers and willing partners – open
doors.
“Can do” attitude (please?)
• Stop doing: Be less insular – work with each
other to adopt excellence in a region.

131
Commissioners
From: Children and adults who use wheelchairs and
their families, carers and advocates
In order to achieve our collective goals of less delay and
less harm, we ask you to:
• Continue doing: Finding more funding and appropriate
levels of it.
• Start doing: Understand their providers and exactly
what they do daily.
• Commissioning for outcomes
• Stop doing: Stop sitting in the office, not finding out.

132
Commissioners
From: Health and care improvement facilitators
• Continue doing:
• Start doing: Collect and map data.
Have conversations with users – hear stories.
Agree regional approach. Take a longer term view
– invest now, save later.
• Stop doing:

133
Commissioners
In order to achieve our collective goals of less delay and less
harm, we ask you to:
• Continue doing: Engagement with us, understanding what
does/doesn’t work within the service.
Consider the model of provision and whether it should
change.
• Start doing:Work with us around service engagement,
making this meaningful.
Support in an integrated commissioning approach in a
holistic way.
• Stop doing: Stop focussing on quantitative data in isolation
start understanding qualitative feedback (patient feedback)

134
Commissioners
• Continue doing: Measure outcomes
• Start doing: Engage and understand what is
available and what meets which needs.
Reconsider what is “in scope” so to use/adapt
innovation
• Stop doing: Stop thinking “local” and broaden
horizons – work together – adapt national
guidelines

135
Commissioners
Four actions that we should ask people in this group to take to achieve our
goals:
• Open and transparent views will be shared
• Encourage all service users to engage to ensure national minimum
standard/ service specification is used by our CCG
• Sign the local charter supporting the campaign.
• A platform for users to get their voice
Second group:
• Commissioners to know their services – get out and about to see the
service in action
• Understand the numbers – the need – current and in the future – and plan
to commission accordingly
• Get commissioners interested in wheelchair services – those that “get it” –
act as chamapions to educate others
• Make sure JNSAs have taken account of the needs of wheelchair users

136
Commissioners
Next immediate steps in getting this group organised for
the campaign:
• Need a national platform/portal to express/share views
• Multiple ways of being involved eg. Electronic
signatures to e-charter as well as paper signatures.
• Get interested! Only 3 CCGs at the event, number one
job – to get interested
– Engage with campaign and embrace change
– National service specification
– Ask the population what they want – mandatory
participation

137
Health and care improvement facilitators
Start doing
• Raise profile with providers – unclear who
healt hand care improvement are
• Data collection – coordination
• Tell us – what support the can promote

138
From: Manufacturers / suppliers or wheelchairs
Continue doing
• Engagement / support for this campaign / x6
work streams
Start doing
• Listening/enabling long-term planning and
thinking / robust data collection
Stop doing
• Saying its “too difficult” / cutting budgets / doing
studies and not then activing on the outcomes

139
From: Children and adults who use wheelchairs
and their families, carers and advocates
Start doing
• Tell users who you are and what you exist to
do?

140
Continue doing
• Engaging with us, like today
Start doing
• Getting to know the commissioners and providers
and the real user experiences
• Use what you learn to influence and
improvements in contracting and commissioning

141
From: Clinicians and their improvement facilitators
Continue doing
• We didn’t know who you were!
Start doing
• Telling us what you do and how you help us as clinicians
• Do the ‘leg work’ in relation to data analysis that will help
improve quality in our services
• Use existing forums to share information rather than start
new ones
Stop doing
• Specify skill mix and staffing radios according to numbers of
wheelchair users and complexity of needs

142
Four actions that we should ask people in this group
should take achieve our goals
• Ensure all understand what improvement
facilitators do and can offer
• Define really clearly what we can do to help
people in wheelchair services to improve things
• Provide and support the evidence gathering to
paint the picture of what we could achieve by
working together

143
Next immediate steps in getting this group organised for
the campaign:
• An audit of complications (commitment) resulting from
wheelchair us: led by a junior medic in Oxford –
support by the AHSN
• Speak with our AHSN colleagues to see how we can
work together to support local withchair service and
skills from up in service improvement
• Come and ask us what we do and we can help to
support you
• Create a platform so that wheelchair users can share
their voice nationally

144
Manufacturers/suppliers of wheelchairs
From: Children and adults who use wheelchairs and their
families, carers and advocates
In order to achieve our collective goals of less delay and less
harm, we ask you to:
• Continue doing: Replicate neuro power chair innovation
across other areas
• Start doing: Mid-prices active user chair.
More interchangeable parts.
‘Mecano Kit’ that grows with people.
Universal good standard (not NHS cheap model).
Good suspension system.
• Stop doing: Locking in controllers on models e.g.
interchangeable / better functionality

145
• Continue doing: Providing a good service
• Start doing: Working with us in partnership to
improve the service and benefit the users.
Support data collection.
• Stop doing: Abdicating responsibility (this applies
to everyone to stop blaming each other but to
work together)

146
From: Clinicians and their representatives
• Continue doing: Developing products –
innovating and improving
• Start doing: More innovation (we know costs
prohibitive).
Liaise with commissioners
• Stop doing: Changing products constantly.
Using so many different fixings per chair.
Look at aesthetics

147
In order to achieve our collective goals of less delay and less harm, we ask you to:
• Continue doing: Continue to listen and continue to work together to develop
products.
Responding to innovation.
Provide demonstration stock.
Support complex assessment.
• Start doing: Be honest about product shortcomings – issues/delays e.g. supply etc.
Involve frontline staff and more research and development.
Improve delivery times.
Work collaboratively at a local level.
Simplify the pricing structure and process for ordering.
Provide high quality information and reference materials online (videos and
YouTube) and written for all staff.
• Stop doing: Having a different price branding for different sized services.
Stop doing so much ‘hard sell’.
Playing competitors off against each other.

148
Next immediate steps in getting this group
organised for the campaign:
• using the iportal upload innovations to make
more accessible to all

150
Closing comments from Moira Livingston
• We have to listen and hear what everyone in and outside the
room are telling us.
• This is urgent and important: we need to take action and
quickly
• The power is in the room: everyone here can act to make a
difference
• Moira committed to NHS IQ doing all it can to help establish
and support the wheelchair alliance , the development of the
wheelchair charter and the campaign
• Then Moira gave her personal commitment that would raise
awareness of this issue across the wider public

151
Closing remarks from Nigel Acheson
• Nigel Acheson told a powerful personal story about
why he is personally committed to “right chair, right
time, right now” and restated the commitment of NHS
England to playing its part in future action to improve
the situation.
• He recollected that with 30 years in the NHS as a
doctor he too was unaware of the problems and today
had made it even more clear for him that as the clinical
leader of this work for NHS England, working alongside
Ros Roughton, he was committed to making things
happen and recognised that this was now time for
action

152
Closing remarks from Baroness Tanni Grey-
Thompson
• Acknowledged that the time is right and there is need for action
and believes that RIGHT CHAIR RIGHT TIME RIGHT NOW has the
potential to make a real difference
• Agreed to chair a Wheelchair Leadership Alliance
• Welcomed that there is freedom to design what the campaign and
leadership alliance will look like
• Would love to see the name wheelchair servicers replaced with the
name wheelchair USER services which is more appropriate for what
the focus should be
• Invited anyone who wants to be involved to contact her at her
parliamentary e-mail address
• Made a commitment to move the service forward to a position
where she would be able to describe how to get a wheelchair in five
sentence.

154
“We don’t want measurably better services. We
want better lives.”
- Fiona Carey
Closing Thoughts

157
Commitment wall
• “I would like to be part of the Leadership Alliance and Working
Groups” - Julia Paylor (Action for kids)
• “Make links between the NHS England Improving Rehabilitation
Services and the Wheelchair Alliance” – Shelagh Morris (Enabler
within Rehabilitation Services)
• “To move things forward” – Monica Young (Rehabilitation Engineer)
• “Will work with all stakeholders to work with our standards CECOPS
CIC” – Brian Donnelly (Developed National Standards)
• “Raise profile of W/C services and the summit in physiotherapy
frontline magazine and work towards W/E repair/maintenance
service” – Claire Offord (Senior Wheelchair Therapist)

158
Some examples from the Commitment wall
• “Have offered discussing PMG with training programme for
professionals” – Olwen Ellis (Posture & Mobility Group
Charity)
• “Go kids go would like to be involved in the process and
would like to share our service users views and
experiences. We will continue to offer practical wheelchair
skills training to wheelchair service staff” – Roy Wild (Go
Kids Go)
• “I commit to getting this discussed by every CCG leadership
team in the country in 2015” – Ros Roughton (NHS England)

159
• “Link to other AHSNs to create national improving wheelchair
services and happy to be involved in the future alliance” – Angela
Green (Yorkshire & Humber Improvement Academy)
• “Share campaign messages across NHS communications colleagues
across the NHS & social care” – Fraser Woodward (NHS IQ)
• “To get on adult wheelchair skills training course running in South
Manchester within the year” – Paula Moulton
• “I commit to telling in less than 10 sentences how users get a chair”
–Tanni Grey-Thompson
• “I commit to raising public awareness by taking every social
opportunity in the next 8 months to tell the stories we have been
sharing today” – Prof Moira Livingston (NHS IQ)

160
• “The British Red Cross reviewed 138 Health and Wellbeing
Boards Strategies in Sept/Oct 2014, to see how many
incorporated wheelchairs. Two made brief reference to
them. These strategies should drive commissioning plans
and decision making. We commit to review the strategies
again in 2015. We hope to find full incorporation of
wheelchairs and wheelchair services in all of them! We also
hope to find recognition of the importance of Right Chair,
Right Time, Right Now” – Chloe Carter
• “To stay with this and make sure the rhetoric becomes
actions” – Rachel Cossins & Tony Adams (NHS IQ)

164
Report compiled by
• Andrew Lambe
Knowledge and Intelligence Manager, NHS IQ
• Arsha Sharma
Project Manager, Horizons Group, NHS IQ
• CJ Graham
Transformation Fellow, Horizons Group, NHS IQ
• Olly Benson
Open Community Organiser, Horizons Group,
NHS IQ
• Polly Pascoe
Knowledge and Intelligence Coordinator, NHS IQ

2nd National Wheelchair Summit: ‘what you said, did, and heard’

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