What, Why & How?

What is SHC?

Why do SHC?

How to do SHC?

Shared Haemodialysis Care

Tania Barnes Aarhus - October 2018

Who am I ? • Shared Haemodialysis Care course leader

• Educator renal since 1987

• Health foundation Closing the gap 2011

• ShareHD programme 2016

www.shareddialysis-care.org.uk

Trained over 500 nurses

The Shared Care Movement

FUTURE

Closing the Gap (Y&H)

SHC Course

SHAREHD

MANY INDIVIDUAL INITATIVES

Continual development and collaboration to

share, teach, support and

report

LEARNING and COLLABORATION

• 19 trusts involved

• Individual contexts embraced

• Collaborative

BUILDING ON A CONSISTENT

FRAMEWORK

Shared haemodialysis care is… Supporting and working with, not for people Treating the person, not their illness & enabling, not disabling

What is SHC?

Participation however small is Sharing!

What is SHC?

The journey is as important as the

destination

“We do a lot of tasks!

We are special!”

“Some of us do lots, some of us do a little.

We are all in the Shared Care gang!”

Shared Care = EQUITY

Vs

What is SHC?

Shared Haemodialysis Care is a service with

Compassion, Dignity and Respect at its heart:

Take away independence by making people

passive recipients of care

Asks what patients want and need

Provides choice

Supports patient’s decisions without coercion

Makes dialysis a positive experience

What is SHC?

The ShareHD vision: For people who receive dialysis at centres to have the opportunity, choice and information to participate in aspects of their treatment

and thereby improve their experience and their outcomes.

What is SHC?

People in control of their own health and care

“As a person and a patient, I care deeply about involvement, because I know it helps me as a patient to live more sustainably with my health conditions, and because I know that, that in turn, can help the National Health Service to exist more sustainably, too.”

Anya de Longh Patient leader and self-management coach 2014, King’s Fund

Do people want to be autonomous patients?

2,704 patients studied, mainly in outpatients large teaching hospitals in Canada

(breast cancer, prostate disease, fractures, continence, orthopaedic, rheumatology, multiple sclerosis, HIV/AIDS, infertility, benign prostatic hyperplasia, cardiac disease)

Results for preferences:

• autonomous 1%

• shared decision making 78%

• passive (older & less educated) 20%

The more familiar people became with their health condition, the greater their desire became to participate

Deber et al 2007. Health Expectations/vol 10 issue 3

Keeping up with the world & recognising what people already do

What happens if we take that away?

Why do SHC?

1. Treat people as individuals and uphold their dignity

1.3 Avoid making assumptions and recognise diversity and individual choice

2. Listen to people and respond to their preferences and concerns

2. 1 Work in partnership with people to make sure you deliver care effectively

2.2 Recognise and respect the contribution that people make to their own care and wellbeing

2.3 Encourage and empower people to share decisions about their treatment and care

2.4 Respect the level to which people receiving care want to be involved in decisions about their own health, well being and care

This regulation describes the action that providers must take to make sure that: each person receives appropriate person-centred care and treatment that is based on an assessment of their needs and preferences. Providers must work in partnership with the person,

Why do SHC?

Experience better health and wellbeing

Reduced perception of symptoms

Improved compliance with medication

Reduced unnecessary hospital admissions

Greater confidence and sense of control

Better mental health

People with long term conditions supported to self care are more likely to:

Care planning: improving people’s lives with long term conditions 2011 Mathers N et al, RCGP

Why do SHC?

Jama 2014

McManus RJ

Effect of self-monitoring and medication self-titration on

systolic blood pressure in hypertensive patients at high risk of

cardiovascular disease: the TASMIN-SR randomized clinical

trial.

CONCLUSIONS AND RELEVANCE:

Among patients with hypertension at high risk of

cardiovascular disease,

self-monitoring with self-titration of

antihypertensive medication compared with

usual care

resulted in lower systolic blood pressure at 12

months.

Why do SHC?

Experiencing positive relationships,

Having control,

Having a sense of purpose,

Are all important attributes of wellbeing

The 5 Ways to Wellbeing was developed for the government by the

New Economics Foundation. It was found that there are 5 key areas

of your life which you can manage to improve your wellbeing.

Well being = feeling good and being able to function in the world

Why do SHC?

2008 Mental Capital and Wellbeing Project The Centre for Well –being at the New Economics Foundation (NEF)

I am no longer existing I feel

alive

Thank you, you have given

back my husband

‘I have a voice’

I can come in get on,

get off and go home

I didn’t realise it meant so much to

the staff when I put my needles in.

They’ve all come in and said well done

Its given me confidence, rather

looking at my partner, I am involved in his

treatment’

I never thought I would be able

to it

Why do SHC?

Patient quotes from Heart of England Birmingham

If you can change the way people feel, it will affect what they wish to do… and so… making people feel better about themselves, therefore affects outcomes

Why do SHC?

Behaviour and relationship change

How to do SHC? WHO (2005) emphasised that a fundamental change in perspective was needed

When we challenge our pre conceived ideas about what people are capable of... We become open to what they want!

Challenging assumptions! How to do SHC?

Which of the following dialysis related tasks would you like to try? Blood pressure

Weight

Hand and access hygiene

Prepare pack

Set-up machine

Insert needles / Connect access

Program machine

Commence dialysis

Discontinue dialysis

Disconnect access / remove needles

Strip down machine and clear away

Problem solving

Administering medications

Engaging at a level meaningful to the individual

How to do SHC?

4

2

3

1

Unlocking potential -

PAM Score 1-4

How to do SHC?

Improving health literacy!

David and Lisa’s insight

How to do SHC?

Co production & the value of creating opportunities to see patients beyond the

routine environment

Listening first before we do what we think is best

Patients feelings

Using our patients to provide a positive influence on others

• I have got a date with a Dr Who Darlek

• I have made my

machine my friend • I go to work to look

after myself part time

• I now have an

electric bike!

What are the magic ingredients to engage patients?

• Offer the very small achievable tasks

• Gentle, casual approach - changing the power relationship to a partnership

• No contract, no pressure

• Make it easy

• Believe in people

How to do SHC?

Consider staff feelings

How to engage staff!

? Confidence ? Ability ? Importance ? How will the change affect their world?

Oh! you asked me

what I thought!

Well actually….

How to do SHC?

Rules to make it happen and measures to know it has

• National targets • Nurse codes of practice • Renal Standards and targets • Individual hospital targets • Local policies, competencies

How to do SHC?

James Paget Norfolk

Report how many patients are doing as many tasks as they wish to do.

Statement re intention to fulfil this request

Should we also include a question that checks coercion?

How to do SHC?

Available on www.shareddialysis-care.org.uk How to do SHC?

Lead Wave TRUST

Dr Sandip Mitra 2 Central Manchester

Dr Saeed Ahmed 1 Sunderland

Dr Praveen Jeevaratnam 1 E&N Hertfordshire

Dr Nicola Kumar 2 Guys & St Thomas Dr Jyoti Baharani 2 Heart of England

Dr Elizabeth Garthwaite 2 Leeds Dr Albert Power 2 North Bristol

Dr Alastair Ferraro 1 Nottingham

Dr Veena Reddy 1 Sheffield

Dr Babu Ramakrishna 1 Wolverhampton

Dr Mark Lambie 1 North Midlands Dr Paul Laboi 2 York

Dr Asheesh Sharma 3 Liverpool Dr Veshal Dey 3 Ayrshire & Arran Dr Ying Kuan 3 Western Trust Dr Jennifer Hanko 3 Belfast Dr Didem Tez 3 South Tees Dr Clara Day 3 QE Birmingham

The 3 Waves A Quality improvement network

ShareHD Measures:

• Patient Activation Score, EQ5D, PROM, Needling and Health Literacy questions every 6 months

• Tasks survey and HHD question (every 3 months)

Analysis includes:

Number of tasks over time related to Quality of life

Matching Tasks to levels of Hospitalisation

• Realist Evaluation of what works, for who in what circumstances and why

• Clinician Support for Patient Activation Measure (CS-PAM) for Wave 3 only

• Formal research will be published 2019 & will be openly available.

• What are the essential key performance indicators

The power of the collaborative and growing network SHAREHD AIMS –

• Increase the number of patients engaging in own care

• Increase the number of patients who are enabled to go home to dialyse

• Improve patient self-management skills irrespective of Patient health literacy level

• Use health care resources more effectively through greater patient participation

www.shareddialysis-care.org.uk

Why SHC?

Patients want it! Patients benefit all round It meets our renal and national agendas Makes long term economic sense!

In summary…

Working with hearts to change minds

Thank you for inviting me to speak and for listening today! Tweet @sharemydialysis

Patient Activation Measures How to do SHC?

R Baseline Data Linking PAM to Tasks

Models of Shared Care

• The shared care bay

• The shared care space/s

• The transient training room

• Champion’s

• A whole team approach

• A self care area visible/ away from the unit

Consider the environment, staff, & levels of engagement

How to do SHC?

The shared care movement…

• Network of engaged staff

• All hands event – 22nd January

• Main course, managers course,

• in-house course development

• Coaching of facilitators

Tweet @sharemydialysis

Gems of learning so far…

Giving information isn’t enough to change mind sets…

focus on behavioural change for staff and patients

Many ways to do quality improvement…

we need to make it simple

Networking is very powerful…

sharing practice is heart-warming

Patients are the experts and we will only learn if we include them…

coaching in partnership needs to be our primary skill

How to do SHC?

255

42

23

15

19

90

32

1

Area figures of Staff trained from courses 1-36 + 3 Manager overview days

22

Total number of staff trained = 518 July 2018

8

1

9

2

We are living longer!

Chronic conditions are predicted to account for 60% of the global burden of disease by 2020 ( World health organisation 2017)

Demand for healthcare is increasing but the budget is not!

Why do SHC?

Supporting people to better manage their care is clearly a way forward to balance the budget isn’t it?

Self management is normal for many people

Why do SHC?

How do people manage their lives between?