How listening to patients has

changed the way we work at

GOSH

Thanks to

Caroline Joyce Assistant

Chief Nurse Quality, Safety and Patient Experience.

Lisa Byrne Improvement Manager

“All organisations should seek out the patient and

carer voice as an essential asset in monitoring the

safety and quality of care.”

Berwick report

Our underlying philosophy

• Meaningful opportunities for engagement

• Listen and hear what they tell us about the care received

• Active involvement and genuinely able to influence

• Understand the difference between experience and

satisfaction

Core principles

• Open about what can and cannot be influenced

• Genuine about our commitment to continual

improvements

• Transparent about how decisions are made

• Timely in consultation, engagement and feedback

What is person centred care

“Systems awareness and systems design are important for

health professionals, but they are not enough. They are

enabling mechanisms only. ……….

Ultimately, the secret of quality is love. You have to love

your patient, you have to love your profession, ……….

If you have love, you can then work backward to monitor

and improve the system.”

Avedis Donabedian

Person centred care

Moving from

What is the matter?

To

What matters to you?

“Care that is respectful of and responsive to

individual patient preferences, needs, and values”

and that ensures “that patient values guide all clinical

decisions.” IOM

Quality Care

Zero Harm

No Waits

No Waste

Working together

Patient Experience Aim

To consistently

deliver an excellent

experience that

exceeds our patient,

family and referrers’

expectations

“Patients and their carers should be present,

powerful and involved at all levels of healthcare

organisations from wards to the boards of Trusts.”

”

Berwick report

Patient & Public Involvement

• Members council

• Parent Representatives

• Patient representatives

• Recruited, trained &

supported like other

volunteers in the hospital

What do they get involved with?

• Everything!

• Committee’s

• Clinical Division

management boards

• Improvement projects

• Inspections

• Clinical outcomes

Patient Satisfaction

• Overall satisfaction at

GOSH in 2014 is 94%

• Overall advocacy for the

GOSH is 97%

• 97% Trust & Confidence

in doctors

• 94% Trust & Confidence

in Nurses

How do we listen?

• Periodic Listening Events for

patients and parents

• ‘GOSH parents say.......

• Children’s video used for

induction & customer care

training

• Focus groups

• Executive & management

team walk rounds

• Parent teas

• Be the Patient

• 15 Steps Challenge

• PALS

• Complaints

• Feedback cards

– Local surveys

• Real time surveying, social

media & feedback apps

• Patient stories

• Friends & Family test

We could do better on experience

• Communication, communication,

communication!

• Knowing how to feedback & complain

• Feeling able to feedback & complain

• Children with special needs

• Patients & families from diverse

backgrounds

• Food

• Play & Activities

Telling People what we are doing

to improve their experience

What do our active members

want most?• Improve what we know

needs to improve

• Improve quicker when we

have to

Improving experience by listening

Example 1

Developing pathways

Complex not Complicated

Improving a Neuromuscular outpatient pathway

Thanks to

Adnan Manzur, Consultant Paediatric Neurologist

Ruth Barratt, Neuromuscular Nurse Specialist

Lisa Byrne, Improvement Manager

Improved care

• Standards of

care

• MDT working

• Improved

survival

The future

• Patient quest for

best care

• Excellence in

clinical care

• Research

Cardiomyopathy,

Respiratory failure

Duchenne Muscular Dystrophy (DMD) A changed natural

history

Typical ‘clinic’ visitEvery 6months -•Height, weight, blood pressure and urine dipsticks

•Physiotherapy assessment - 90 min

•Dr's neuromuscular assessment - 60 min

•Respiratory function test

Every 12months - DEXA bone density scan/Echocardiogram

Every 12&18 months - Blood tests

Patient dependent additional appointments•Review by dietician

•Discussion with clinical nurse specialist

•Consultation with care advisor / social worker

•Participation in research clinical trial

Patient Pathway

Patient arrives at

Ground Floor

RLHIM

Key

Start/Finish

Process step

Decision step

Reception

checks:

name,

address,

GP, tel no,

school

Patient waits

in Clinic A,

Level 1

Healthcare

assistant gives

patient

programme

and explains

day

Take lift to

L1

Patient

weight,

height, bp,

urine & lung

funcion

taken

HCA checks time

and contacts

Physio

Parent takes

yellow form

to reception

Next appointment

written on yellow

form

Yes

Letter &

Referral sent

to FCO

Patient

sees FCO

Is FCO

available

Yes

No

Does child

need

blood

tests?

Patient goes

to

phlebotomy

for blood

test

No

Yes

Parent and patient

leave hospital

Yes Patient goes

to main

building

Does

family

need to

see FCO?

No

Does

patient

have X-

Ray/ECG/

DEXA/

ECHO

appt.

No

Can child

go to

Physio

NoPatient waits in

waiting area

Physio brings

patient to gym

on L4 using

back lift

Physio brings

patient back to

waiting area on

L1

Patient sees

Doctor/Consultant

Yes

Engagement

• Pathway mapping with stakeholders

• Questionnaires – staff & families

• Patient stories

• Patient shadowing

• Telephone interviews

• Focus group with families

• Post clinic de-briefs

What bugs you?

Key Themes

• Family/Patient

- Stress

- Coordination

- Communication

- Environment

• Staff

- Stress

- Coordination

- Communication

- Environment

Aim and Objectives

We aim to improve the experience of

boys and their families at the

NMPDDC Clinic such that they

consistently report the day was

coordinated to a good/very good

standard, patient’s concerns listened

to and both parent and patient

involved in discussions

Customised care plan for each patient with clear plan for day of review

Appropriate time slots for appointments. taking account of travel to and from

Patients are able to say that there were not waiting more than 30mins for appointment

Pre planning of appts. required on the day

Effective team working essential so that we can deliver the care patients need when they need it

Parents to be supported to navigate between their appointments

Up to date information shared about how the clinics are progressing

Pre-clinic planning of who is in attendance each day (staff and patients)

Build team so that all members’ contributions are reflected positively in patient and staff experience

Communicate clearly with families about all aspects pre, during and post the

GOSH visit

Communicate clearly within team about the day

Ensure appropriate schedule for each family

Appropriate wheelchair access to all appts.

Sufficient rooms for confidential conversations

Provide suitable patient environment

Privacy screens in gym

How are we going to do it?

What do we need to do?

Clinic letter received promptly after last appt. to ensure patient care is not impacted

Clear signage to all appts.

Interventions• New clinic appointments schedule

• Clinic prep packs for consultations

• Volunteers to support clinic

• Single page appointment template

• Vitamin D alert email to notify consultant when results are returned

• New privacy screens in gym

• Neuromuscular in-tray in clinic waiting area

• Revised weekly clinic schedule email

• Updated hard copy plan for patients

• Remote access for clinicians to Clinical Document Database

• Calling families pre appointment to confirm attendance

• Text alert system to remind families about appointments

Stress Resilience

4 Workshops held1)Wider NM team – defining stress resilience & introducing

coping strategies. (Delivered by Kings Fund Psychologist)

2)Core Clinical team – case study.

3)Core Clinical team – identifying generators of stress &

tools and techniques to use

4)Core Clinical team – maximising personal resources(Co-delivered by Kings Fund Psychologist & NM Family Therapist)

Outcomes

• Sept 2013, 91% of families reported receiving a care plan on arrival compared with only 25% in Sept 2012

• Sept 2013, 92% reported waiting <30mins for appointment compared with 58% in Sept 2012

• >90% of families report that their child’s concerns were listened to and their management plan was explained in a way families understood

What they say now

Better than ever

Can’t fault it

Well organised

Challenges

• Getting patient perspective

• Environment constraints

• Time

• Changing attitudes

Learning• 1-stop shop approach – desirable for families

• Introduce changes by testing on a small scale

• Team buy in is crucial

• Formally engage with advocacy groups

• Project manager resource crucial

• Collect qualitative data as well as quantitative

data

• SPC charts not ideal for small & fluctuating

samples

Next Steps

•Share the learning

•Bi-annual focus groups with families

•Continue to gather feedback on the Family Information & Communication Pack, update and distribute across service

•Regular stress resilience sessions with staff

•Wall rack(s) for support information leaflets

•Continue to monitor clinic letter and Vit D result turnaround times

•Scope project to spread improvements to other clinics

•Update website

Patient safety collaborative

Charlotte Hopkins & Lynette Linkson

Areas of concern from QF in March

The learning loop from incidents

Communication

Handovers/transfers

of care

Deteriorating doctors

Leadership

Lack of responsibility

Lack of senior support

What you want from a safety collaborative

Shared learning

Common approach

& structure

Help with training

Joint working

Support with

implementation

QI Capability and Capacity

Capability vs. Capacity?

Capability vs. Capacity

UCLPartners approachTitle Curriculum

Intro to QI half day ‘basics’ – what every UCLP and partner employee should know in order to

participate in QI.

Masterclasses Stand alone sessions developing knowledge and building on skills gained in the Intro Day

e.g. measurement for improvement, AAR, process mapping

Train the Trainer:

Intro to QI &

Masterclasses

Actively training and then using UCLP and Partner employees to support delivery of/co-

deliver the Intro to QI and Masterclasses, thus enabling them to take sessions out to Partner

organisations

UCLP QI

Greenshirts

Broader and deeper year-long programme to develop our ‘GreenShirts’. Delegates will be

able to access significant training, coaching, support and resource to emerge as enabled

change leaders, confident and competent to lead QI initiatives in partner organisations.

Local (Partner) QI

training

Programmes

Support to Partner organisations to develop their own bespoke QI training programmes to

support their local QI initiatives, mirroring UCLP framework as appropriate to local

demand/resource.

QI capacity

generating

Session(s) developed to provide senior leaders with a framework and insights necessary to

enable/support the delivery of successful QI initiatives in their own organisations

E-learning Videos, slideshows, reading etc for those not able to attend sessions. Signposting to other

relevant resource e.g. TED talks

Help us to help you!

-What are your thoughts?

-What’s your current Capability? Honestly?

-What’s your current Capacity? Honestly?

-What do you need to help you get involved in the Patient

Safety Collaborative?

22

Professional Manager

23

Professional Manager

Patient

Individual Patient Engagement at Service Level

Individual Patient Engagement at National Level

Collective Patient Voice at National LevelCollective Patient Voice at Service Level

Better picture – mac brand?/supportive etc

Our Brand