1. www.england.nhs.uk Mind the Perception Gap Neil Churchill Director for Patient Experience @neilgchurchill Thursday 18 September 2014

2. www.england.nhs.uk The invisible woman: Storyteller Beryl Clark

3. www.england.nhs.uk First Appointment…. @PatientAsPaper Images have been removed for copyright purposes Image descriptor: The beginning of the patient journey.

4. www.england.nhs.uk ….feeding peg…. Images have been removed for copyright purposes Image descriptor: The introduction of the feeding peg and associated discomfort obvious on patient’s face

5. www.england.nhs.uk ….radiotherapy…. Images have been removed for copyright purposes Image descriptor: A treatment that many clinicians on the patient pathway have never themselves seen

6. www.england.nhs.uk ….journey home…. Images have been removed for copyright purposes Image descriptor: The patient is exhausted, and changed by her journey through the treatment

7. www.england.nhs.uk ….follow up appointment. Images have been removed for copyright purposes Image descriptor: The journey has come full circle but consultant has not witnessed all the steps in between

8. www.england.nhs.uk I am involved as an active partner in my care. I am treated as an individual – my needs, values and preferences are respected. There is a recognition that I am the expert on me. I am able to access services when I need them, and my care is coordinated. I am asked about my communication preferences so that communication is tailored to me. I have access to the information I need, which is presented in a way that is right for me. I have access to the support I need and is right for me, including emotional and practical support, and I am able to involve my loved ones in decisions about me. The environment in which I receive my care is clean and comfortable and makes me feel dignified. Abridged from: http://www2.warwick.ac.uk/fac/med/research/hscience/sssh/publications/warwick.pdf What is a good experience of care?

9. www.england.nhs.uk Another way of looking at it:

10. www.england.nhs.uk Service excellence

11. www.england.nhs.uk Service excellence ‘Put emotional experience at heart of the healing process, not as an add-on’: Recognise the significance of ‘memorable events’ and plan for them Fred Lee ‘If Disney Ran Your Hospital’ (2005)

12. www.england.nhs.uk 17 April 2013 Derbyshire Healthcare NHS Foundation Trust Opening Ceremony @GrangerKate

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14. Service excellence ‘Measure to improve, not to impress’: Don’t let assessment become a substitute for action

15. www.england.nhs.uk What is the Friends & Family Test? Simple test being rolled out across the NHS Open question providing a rich source of patient feedback for teams On the 4th September 2014, 3,724,653 patients responded to the FFT (national data that is collected for inpatients, maternity and A&E) 78% of Trusts say that FFT has improved the emphasis given to patient experience http://www.england.nhs.uk/ourwork/pe/fft/fft-test-review/

16. www.england.nhs.uk What has it achieved? Environment - Soft closing bins have been purchased for inpatient areas as a response to patients feeding back that noisy bins kept them awake at night Sleep – responded to feedback about noise at night by launching ‘Comfort at Night’ campaign Maternity – launched a new breastfeeding support group to encourage breastfeeding in response to feedback from new mums St Georges Healthcare NHS Trust Hillingdon Hospitals NHS Foundation Trust Salisbury NHS Foundation Trust

17. www.england.nhs.uk What has it achieved? ‘I arrived 25 mins late having parked the car at the wrong end of the four hospitals. As soon as I walked in, I was looking for signs and information boards and a gentleman porter said “You appear lost, may I help you?” I was a long way from where I needed to be, he pointed me in the right direction and said I’d pick up signs when I got nearer. Five minutes later I was looking around for signs and again I was asked, this time by a nurse, if she could help me. This has never, ever happened in any other hospital. I sometimes feel I am wearing my invisibility cloak in some places’.

18. www.england.nhs.uk The Friends & Family Test From 1st December 2014, the FFT will be rolled out to GP practices, and from 1st January 2015, to mental health and community services. It will further be extended from 1st April 2015 to NHS dental practices and patient transport services as well, covering acute hospitals outpatients and day cases. By April 2015, we will have introduced the FFT to millions of patients across thousands of providers of NHS funded services including GP and dental practices, ambulance, mental health and community services, as well as outpatients.

19. www.england.nhs.uk Service excellence ‘Compliance is the weakest form of motivation’: Build empowered teams and decentralise the authority to say yes.

20. www.england.nhs.uk A role for incentives A percentage of payments to providers should be linked to what patients say about the quality of services; Can we include in tariff? Can money follow patients? How can we avoid suffocating intrinsic motivation to improve? Can incentives be designed around more vulnerable patients?

21. www.england.nhs.uk Levels of Motivation HABIT IMAGINATION WILLPOWER COMPLIANCE

22. CASE STUDY “I went to the dentist, reported to the receptionist and the receptionist forgot about me. I’m not used to my sight loss and lost my orientation and couldn't bring myself to ask anyone for help and just felt too nervous to shout out or anything. I ended up sitting there for hours and it was an extremely frightening experience.”

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24. Making sure everyone has a voice…

25. www.england.nhs.uk Easy Read forms

26. www.england.nhs.uk The Big Idea: A new ‘accessible information standard’ to provide direction to the health and care system around accessible information and communication support for patients, service users and carers with a disability, impairment or sensory loss. Scope includes identification, recording, ‘flagging’ (highlighting / prompting for action), sharing and meeting of needs. Following a formal process to be approved as a new information standard for the health and social care system. Responsibility for approval now with Standardisation Committee for Care Information (SCCI). A new ‘accessible information standard’

27. www.england.nhs.uk Accessible Information: ‘Making health and social care information accessible’ The project will make an Information Standard around accessible information and communication support. This is a set of rules that health and adult social care bodies must follow.

28. www.england.nhs.uk Our vision for the accessible information standard is that: “Patients and service users, and where appropriate carers and parents, with information or communication support needs relating to a disability, impairment or sensory loss have those needs met by health and social care services and organisations.” The vision

29. www.england.nhs.uk The Standard includes: Patients or service users of publicly-funded health or adult social care, or their parents or carers. Publicly-funded means that the service is paid for by the Government through money from tax payers. This includes all NHS services. Information or communication support needs because of a disability, impairment or sensory loss. This includes support for people who are blind, d/Deaf, deafblind, have had a stroke, or have a learning disability. Providing information, such as patient leaflets and letters in different formats such as large print, braille, via email, in an audio format or in easy read. Supporting people to communicate through using a hearing aid, lipreading, or using a communication tool. Arranging a professional to provide communication support or to be an interpreter. For example a British Sign Language interpreter, deafblind manual interpreter or an advocate. Support for appointments, for overnight stays in hospital, and for long-term care such as at a care home.

30. www.england.nhs.uk The Proposed Standards; What are the expectations? The standard will set out how organisations should find, write down and share details of people’s accessible information and communication support needs. Providing them the support they need to meet the patients needs by; 1.Identifying and recording communication needs of the patient 2.Providing correspondence in appropriate format, (e.g. Braille) for instance letters, leaflets, standard service information 3.Providing communication support professionals e.g. interpreters, communication support workers and advocates where necessary. These must be suitably skilled and qualified and SHOULD be accredited OR have registration with a professional body

31. www.england.nhs.uk Following engagement activity last winter, a consultation is now live. Read the consultation document and complete an online survey at www.england.nhs.uk/accessibleinfowww.england.nhs.uk/accessibleinfo The consultation document is available in Word, PDF, easy read, braille, audio and British Sign Language. The consultation closes on 9 th November. Queries to england.nhs.participation@nhs.netengland.nhs.participation@nhs.net Have your say - consultation

32. www.england.nhs.uk Patients as partners Centralised system to support learning disability service user led quality assessments 4 Phases approach, starting October 2014; 1 – Research, existing user led measures 2 – Use, the research to design a tool base on best practice 3 – Establish, a register of trained quality assessors 4 – Establish, a network of social enterprises for facilitating the commissioning & delivery Supporting work around Winterbourne & Confidential Inquiry into Premature Deaths of People with LD (CIPOLD)

33. www.england.nhs.uk Kindness – a virtuous circle KINSHIPKINDNESS ATTENTIVENESS ATTUNEMNETTRUST THERAPEUTIC ALLIANCE BETTER OUTCOMES J. Ballatt & P. Campling – Intelligent Kindness (2011)

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35. Why are You the Patient Experience