Creating a Patient-Led NHS NHS Alliance Conference 23 March 2006

1. Creating a Patient-Led NHS NHS Alliance Conference 23 March 2006 “From Involvement to Engagement” Anecdote/Stories/Subjective/Practical Trevor Gay CFEP Associate

3. Structure • The New Customer • Myths about Patient Involvement • It’s more than just surveys • Three Key Messages

4. My Questions/Statements • The world is changing – FAST – Had you noticed? • Does it affect the NHS? – 3rd biggest employer in world – You bet it does • Why does it matter? • What can I do personally? • Is this just another Fad? • I’d like you to be an ‘enemy of inertia’

5. The New Customer “We’re in the internet age and the average patient can’t e-mail their doctor” Don Berwick, Harvard Medical School “They say - We must follow a process for all clients.” I say – Have you ever tried to put on a size 6 shoe on a size 11 foot?” Tom Peters ‘Work Manifesto’

6. The New Customer • Thoughts of Gary Hamel. • Professor of Strategic and International Management, • London Business School • Re-Inventing Management– May 2005 • 12% of what we know we have learned in the last five years. That has never happened before • Computing Power – 1946 - 14 functions per second – 2005 - 300 trillion per second • Customers are more cynical – ‘they can smell bullshit a mile away’ • The future is less and less extrapolated from the past because of the pace of change • Change should be intrinsic not marginal – there should be no traumatic change • Efficiency is now a given. We should not be getting better we should be getting different • 50,000 divorce settlements now online so that ‘customers’ can see typical settlements.

7. The New Customer • The well informed customer - Emotional intelligence – the world is • becoming more ‘virtual’ • Finland – 25 % Break ups by text – Think about customer implications • of that • Skype - Free internet phone calls – LULU – Self publishing.Everything • is changing and the power is shifting to the customer • Customers want variety – Amazon.com – 3000 top selling books – • less than 50% of sales • ‘I did all my Christmas shopping online’ – 20 year old Hairdresser • £100 to spend – Currys, Dixons, or front room?? • Amazon - customer care story

8. The New Customer Dr Baum's Abbreviated Policy Manual Rule No. 1: The patient is always right. Rule No. 2: If you think the patient is wrong, reread rule No. 1. All other policies are null and void. Dr Baum is Clinical Associate Professor of Urology, Tulane Medical School, Louisiana State University School of Medicine, New Orleans, and the author of Marketing Your Clinical Practice: Ethically, Effectively, and Economically. Correspondence: Neil H. Baum, MD,. Web site: http://www.neilbaum.com.

9. Myths about Patient Involvement • Patients don’t understand • Demands will mean we cannot cope • Staff don’t really have the time to do all this as well • Patients are not really interested in all this anyway

10. It’s More than Just Surveys • Dr Shipman would have scored well – we need this AND other measures to • get the fullest possible picture. • Revalidation for Doctors will contain patient feedback • Doctors in America are paid to go on communication courses because • they know litigation is often as a result of poor communication • ‘Verdict Pending’ – Patients don’t sue docs who care for them with kindness • It is cultural – it is about winning hearts and minds • Be bold – ask patients for feedback

11. It’s More than Just Surveys • Concerns about patient involvement • From PatientsFrom Staff • Views not taken seriously Work will be criticised • They’ll look foolish Unrealistic demands • Won’t understand issues Undermining of role • May cause offence Affect d/p relationship • Might affect future treatment Will take too much time

12. It’s More than Just Surveys • Those practices who discussed results with patients improved • their scores significantly when repeating IPQ later • Those who did not share with patients did not improve scores

13. It’s More than Just Surveys • Patient Groups – One Possible Model • Groups of patients (3-6) who discuss results and help interpret these • and plan changes • Need not be fully representative as survey will give broad feedback • Meet regularly with practice and help communicate with wider population • Advertise for volunteers especially when running a patient survey • Invite former complainants

14. It’s More than Just surveys • Target obvious local leaders • Get good gender/age/ethnic mix • Articulate/Assertive • Working/non working mix • Problem solvers/solution focused

15. It’s More than Just Surveys • Meetings • Practice Manager to Chair initially (or NED) – agree patient lead at end • Involve key members of practice team (GP, Receptionist, Nurse) • Discuss survey Results • Mutually identify priorities, successes and areas for improvement • Agree Plan for action

16. It’s More than Just Surveys • Discuss constraints openly • Identify third parties to assist – e.g. PCT • Review goals and set new ones • Audit annually via patient survey • Disseminate information to wider practice population

17. It’s More than Just Surveys • Resource Implications • Practice Team time • Expenses for patient members • Secretarial support • Costs of newsletters/information display • Shortcomings • Mentally disabled/sensory impaired patients • Youth and young adults difficult to engage • Those who don’t visit surgery – residents in long term care • and housebound

18. It’s More than Just Surveys • Summary of Patient Group Experience • Need to get ‘interested patients’ rather than ‘patients with an interest’ • Survey gives wider feedback than from individuals present so • good moderator • Patient Survey gives hard evidence for staff and patients to discuss • Need to empower patients to speak first • Patients more comfortable as group and thus more likely to comment

19. It’s more than Just Surveys • Summary of Patient Group Experience • Patient groups often need a focus to get them going e.g analysing • survey findings • To work patients need to agree agenda and understand their role • They need regular fertilisation and nurture to sustain them • Patients are intolerant of vague ambitions – prefer practical/pragmatic • They are often harsher critics of their patient peers than clinicians

20. Three Key Messages • Trust Me I’m a Patient • Nothing about me without me • Tell me the Truth