2nd national wheelchair summit: ‘what you said, did, and heard’

1

My Wheelchair, My Life Wheelchair Summit

Report of the day

27 November 2014

@rightwheelchair

2

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

3

Calm before the storm….early arrivals and set up

4


5


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

https://twitter.com/search?q=#MyWheelchair

6

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

eDigest published to coincide with the summit




7

Welcome & Outline For The Day

Helen Bevan

9

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

10

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

https://www.youtube.com/watch?feature=player_embedded&v=VmGYvwz51_k#t=0

https://www.youtube.com/watch?feature=player_embedded&v=VmGYvwz51_k#t=0

http://youtu.be/VmGYvwz51_k

11

Poll 1


Live Polling is a feature of the day!

http://www.pollev.com/rightwheelchair

12

Why Are We Here?

Fiona CareyRos Roughton

Prof Moira Livingston

13


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

14


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

15


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

16

Activity A‘Fresh Eyes’ Report Back

17

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

18

Activity A: Using “Fresh Eyes”

19

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

20



• 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

21



• 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

22


Activity A: Using ‘fresh eyes’ – Table 10• 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

Activity A: Using ‘fresh eyes’ – Table 11• Monument – ‘historial – cast in iron – need

to evolve’• “Take the positives forward and the

negatives in the past” to evole, improvement.

http://www.go-kids-go.org.uk/

23


24

Activity A: Using ‘fresh eyes’ – Table 12• Law (occupation)• To add a clause in the Equality Act making it

mandatory to provide wheelchairs promote independent living

Activity A: Using ‘fresh eyes’ – Table 13• Basketball – A team approach.• Achieve a win within short ‘game’ timescale,

an example of collaborative working, to spur us on to greater victories

Activity A: Using ‘fresh eyes’ – Table 14• Breaking down the barriers to access Barrier

free travel industry across the country


25

Activity A: Using ‘fresh eyes’ – Table 3• Take out the garbage!• Timely and appropriate provision enabling

independence to function in everyday life• Eradicate waste and duplication

Activity A: Using ‘fresh eyes’ – Table 1• 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

Activity A: Using ‘fresh eyes’ – Table 2• Librarian• Encourage libraries to promote information

and signposting to wheelchair services and host days where people can experience being in a wheelchair


26

MY VOICE, MY WHEELCHAIR, MY LIFE

Work stream progress from the first summit

27

Karen Pearce

Director of Care

MND Association

[email protected]

Kate Smith

Senior Commissioning Manager

West Hampshire Clinical Commissioning Group [email protected]

Lets make real and lasting change……

mailto:[email protected]


28

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:

29


Kate Smith

How will it all fit together….

30

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

groupsLeads feedback

progress from theme

groups


Karen Pearce

Describes status from each workstream

31


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

32

E-digest & Proposal For The Campaign


33

eDigest published today





34

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.”

35

The digest’s three recommendations:

• 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’ 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 NowIf we get this right, we can reduce • avoidable harm • unacceptable

delays• unnecessary waste

Ultimately we need everyone to commit to:

36

Activity BWhere Are We?

37

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

38

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

39

Activity B: Where are we?

40

WHEELCHAIR SUMMIT: PRESS CONFERENCE

What surprised you?

What have you reflected on?

What aspects do we need to emphasise?

41

Wheelchair summit: press conference


42


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

43


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?

44


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

45



46



47



48


49



50



51



52



54


55


56


57


59


60


62

Lunch & marketplace

63

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

64

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?

65

WHY A CAMPAIGN?

BARONESS TANNI GREY-THOMPSON

66

Baroness Tanni Grey-Thompson

67

Why a campaign?

Baroness Tanni Grey-Thompson invited participants to contact her directly with their concerns and issues about the Wheelchair [email protected]


68

Why a campaign?

69

Aims For The Campaign

Helen Bevan

70

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

71

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

72

Recommendations

• 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:

73

Three interconnected wheels

The 6 workstreams

Right chair, right time,

right now

NHS England actions

74

Setting aims for a campaign

Some is not a number;

soon is not a time;

maybe is not an answer

75

Aims for the campaign?

76

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

77

• Build a wheelchair declaration: power in “the act of declaring”

• Identify the people and groups that can take action and create 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

78

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

79

How can we light up the whole country?

80


81


82


83

Interest from overseas


84

Perspective from Whizz Kidz

https://twitter.com/WhizzKidz


https://twitter.com/WhizzKidz

85


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

http://www.wheelchairmanagers.nhs.uk/

86

Activity CBuilding The Focus

87

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

88

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?

89

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?

90

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

What should be the priority areas?• 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

91

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

92

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)

93

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

94

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

95

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.

96

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

97

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

98

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.

99

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.

100

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

101

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? What should be the priority areas?

• This has to be a national challenge to get new ringfencedfunding 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 ieeducation, 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 alliance2. Holistic3. About more than wheelchairs, otherwise “we cement the silo”4. Social care, housing, schools, employment5. H+WB6. Prevention focus7. Independent chair – autonomy8. Profile and awareness raising – start an honest and open conversations that recognises the public as interested

citizens and tax-payers9. Learning from other alliances10. 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:

Continuedoing

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 advocatesIn 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


• Continue doing: Continue to listen.Passionate. Professionalism.Continue to promote best practiceMaintain knowledge baseWorking as a team.

124


From Commissioners of wheelchair services


• 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 serveSecond 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 servicesIn order to achieve our collective goals of less delay and less harm, we ask you to:• 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

From: Manufacturers/suppliers of wheelchairs

• 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


• 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

From: Those who provide wheelchair servicesIn 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

From: Manufacturers/suppliers of wheelchairsIn order to achieve our collective goals of less delay and less harm, we ask you to:• 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 voiceSecond 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


• 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

From: Those who provide wheelchair services

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 wheelchairsContinue doing• Engagement / support for this campaign / x6

work streamsStart doing• Listening/enabling long-term planning and

thinking / robust data collectionStop 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


From: Commissioners of wheelchair services

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 facilitatorsContinue 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 onesStop 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 advocatesIn 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


From: Commissioners of wheelchair servicesIn order to achieve our collective goals of less delay and less harm, we ask you to:• 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 In order to achieve our collective goals of less delay and less harm, we ask you to:• 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


From: Those who provide wheelchair servicesIn 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



• using the iportal upload innovations to make more accessible to all

149

Closing remarks

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.

153

Closing Thoughts

154

“We don’t want measurably better services. We want better lives.”

- Fiona Carey

Closing Thoughts

155

Commitment wall

156

Commitment wall

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)

161

Twitter feedback

162

Twitter feedback

163

Twitter feedback

164

Report compiled by

• Andrew LambeKnowledge and Intelligence Manager, NHS IQ

• Arsha SharmaProject Manager, Horizons Group, NHS IQ

• CJ GrahamTransformation Fellow, Horizons Group, NHS IQ

• Olly BensonOpen Community Organiser, Horizons Group, NHS IQ

• Polly PascoeKnowledge and Intelligence Coordinator, NHS IQ

2nd national wheelchair summit: ‘what you said, did, and heard’

Health & Medicine