NAVIGATING

Living independently with long term conditions

An ethnographic investigation

Interim findingsPublished: 27th October 2015

HEALTH AND CARE

CONTENTS

Introduction1 Key findings2Living with long term conditions1

Managing my long term conditions2

Personalise my care 3

The double care-burden4

We need to talk about care5

Putting the findings into practice3Round table discussionhighlights

1

Implications for services2

Support networks6

Appendix4Project team1

Reference group2

Round table discussion attendees

3

Contact4

Method1

Setting the scene

2

Summary7

My Declaration3

Next steps4

INTRODUCTION

INTRODUCTIONThis ethnographic project was born in January 2015 when Beverley Matthews, Programme Delivery Lead - Long Term Conditions, NHS Improving Quality commissioned The Ipsos Ethnography Centre of Excellence to explore the lives of older people (aged 65+) living with multiple long term conditions.

During the course of this project, the team* has been working with a reference group* to analyse the data and discuss the implications for services in the broadest sense.

In September 2015 a group of senior stakeholders with broad expertise in the health, social care and charity sectors gathered for a round-table discussion. The group discussed and contemplated the key findings and potential implications for service design. A summary of this discussion will be published in late October 2015.

It is the intention to continue this journey and co-design improvements in service delivery for people living with long term conditions. Final results will be published by spring 2016.

This slide deck details the findings so far.

* A list of the people in the project team and reference group can be found at the end of this deck.

The Long TermConditions Improvement Programme is embedding person-centred care at the heart of service delivery for people with long term conditions and is commissioned by NHS England, with Dr Martin McShane as programme SRO.

Click to find out more

The Ipsos Ethnography Centre of Excellence is a team of dedicated specialists, made up of anthropologists, researchers, ethnographers and film-makers. As part of our research outputs, we produce films that provide context and show behaviour, which helps interpret daily life.Click to find out more

AIMThe overall aim of this project is to help national, regional and local health and care economies design their future services effectively, in order to meet the identified needs of people living with multiple long term conditions, as well as the needs of their carers.

Support networks

Everyday context

Relationships and

interactions

Planning and coordination

of care

OBJECTIVESto understand and explore:

Implemen-tation

THE JOURNEY

Launch

Project set up

Ethno-graphic

fieldwork

Initial analysis

Care diary fieldwork

Interim analysis

workshop 1

Reflective interviews

Interim analysis

workshop 2

Round table event

METHODOLOGY

FILMEDETHNOGRAPHICAPPROACH WEEK CARE

DIARY ANDREFLECTIVEINTERVIEW

4C.9HOURSFACE-TO-FACEPER FAMILY

DIVERSESAMPLE OF PARTICIPANTS15 PATIENTS + FAMILY

FRIENDS + CARERS

3665+PATIENTS AGE

OUR PATIENTSAND THEIRCARERS

Sampled to include a diverse mix of:• Income• Age• Ethnicity• Gender• Level of physical mobility• Local authority, based on NHS England’s

long term condition indicators• Activation level• Carer type

SETTING THE SCENE

78%Agree that “Britain’s national health service is one of the best in the world”

52%Say the NHS is the thing that makes them most proud to be British

Source: Public Perceptions of the NHS and Social Care Tracker . Ipsos MORI for DH. Winter 2014.

of English adults say “the NHS will be there for me when I need it”

82%

Source: Source: Ipsos MORI NHS 60th awareness tracking August 2008

BUT…

The number of people with three or more long term conditions is predicted to rise from 1.9 million in 2008 to 2.9 million in 2018

1.9m

2.9m

Source: The DH Long Term Conditions Compendium of Information

The ageing population and increased prevalence of long term conditions have a significant impact on health and social care and may require £5 billion additional expenditure by 2018

Source: The DH Long Term Conditions Compendium of Information

Treatment and care for people with long term conditions is estimated to take up around£7 in every £10 of total health and social care expenditure

Source: The DH Long Term Conditions Compendium of Information

AND…

50% of all GP appointments

People with long term conditions now account for about…

64% of all outpatient appointments

over 70% of all inpatient bed days

Source: Kings Fund, Long-term conditions and multi-morbidity

People with long term conditions are twice as likely as the general public to say they are not as involved as they want to be in decisions about their care and treatment

Source: Ipsos MORI NHS Winter Tracker 2014

People with long term conditions are five times more likely than members of the general public to say they are not confident in managing their care

Source: Ipsos MORI General Practice Patient Survey data

Older people with a long term condition would rather wait longer to see the same GP

Source: Londoners’ attitudes to health and health services by Ipsos MORI for London Health Commission

KEY FINDINGS

People with long term conditions want to have everyday achievable goals and support that fit realistically within their personal context. These small differences allow people to feel hopeful and positive, and able to live well with their long term conditions. A lack of these may have a negative impact on mental and physical well-being. One of the goals of this project is to identify these simple changes.

1 LIVING WITH LONG TERM CONDITIONS

Click the image to view the film

How can we encourage people to thrive in the present? What small changes

can we encourage people to make to help them have better mental and physical well-being? How can we better help

the family unit manage changes in identity?

What services would help people feel supported?

How do we help people overcome the fear of being ill?

1 LIVING WITH LONG TERM CONDITIONS KEY ISSUES

2People are trying hard to manage their long term conditions to the best of their abilities, but often feel the system is not set up to cope with their multiple and complex needs. Their own thoughts, feelings and knowledge about the conditions they have can be dismissed and patients often feel infantilised during interactions with healthcare professionals. Communication from different health and care professionals can be conflicting, and therefore confusing and frustrating, to patients. This exacerbates the already complicated landscape patients have to navigate to manage their long term conditions.

MANAGING MY LONG TERM CONDITIONS

Click the image to view the film

People have had experiences which impact their trust in staff. How can we turn this around?

Patients feel that their own feelings and experiences are ignored. How should we deal with their instincts and have adult-to-adult conversations?

How can patients and healthcare professionals make the most of a ten-minute appointment?

The system can be dismissive of the work patients do to manage their conditions. How can we turn this around so that: a) we harness the knowledge of patients; and b) we encourage and empower more patients to be curious in order to better manage their conditions?

How should we ensure that patients don’t feel like they are getting conflicting advice in managing their long term conditions?

How can we better understand the patients’ context?

2 MANAGING MY LONG TERM CONDITIONS KEY ISSUES

3People with more than one long term condition struggle to coordinate them all. They can feel there is no support linking all of their conditions and focusing on them personally and holistically. They feel that the support that is available focuses on individual long term conditions or a specific ailment at a given moment in time, rather than taking into account the bigger picture and the future.

PERSONALISE MY CARE

Click the image to view the film

Whose role is it to look at a patient holistically?

People want and need person-centred care; however, in some instances, care isn’t personalised. What can be done?

People can feel in the dark about their conditions. How can we help them feel supported when awaiting results, etc.?

What good practice is out there, which easily facilitates coordination between services?

How can we discuss the future with patients, and who should have this conversation?

How can we bring patients’ physical and mental health, and social care needs, together?

3 PERSONALISE MY CARE KEY ISSUES

4People with long term conditions often feel that they are a burden within their home, as well as within the health and care system. At home, they are becoming more dependent on others and are struggling with changing identity, role reversals, dependency and physical barriers to doing the things that they used to do. Within the health and care system, people who have multiple long term conditions feel there aren’t enough resources to encompass their complex needs. Depending on others can be difficult: patients often want to provide reciprocal help to others but struggle to find a way of “giving back”.

THE DOUBLE CARE-BURDEN

Click the image to view the film

How can we help people feel comfortable asking for help when they need it?

How can we meet people’s needs to provide reciprocity to the people that help them?

How can we support people to explore the emotional burden they feel?

How can we flex consultations to deal with this issue?

Where and to whom should patients talk about their needs?

How can we create a debate about the role of the NHS, to help manage people’s expectations?

4 THE DOUBLE CARE-BURDEN KEY ISSUES

5We observed an obvious absence of discussion about care and care needs within the home and the healthcare system. In the home, care is often provided informally by family members, and there is no template for a structured discussion. Within the medical setting there is no trigger for discussion and the wider context of someone’s overall care needs is often absent. This means that some people and their families aren’t getting the support they need.

WE NEED TO TALK ABOUT CARE

Click the image to view the film

How can we encourage healthcare professionals to open up conversations about care needs with patients?

What should trigger the need for care need discussions within the health and care system?

Who cares for the carer? How can we

encourage patients to feel it’s OK to speak to professionals about their care and care support needs?

How can we create space and facilitate discussions within the family unit about care needs now and in the future?

How should we better take into consideration the family context?

How should we evaluate how care needs change over time?

How do we get informal carers and professionals discussing what works and/or doesn’t work?

5 WE NEED TO TALK ABOUT CARE KEY ISSUES

6 SUPPORT NETWORKS

By exploring people’s support networks with them via a mapping exercise, we were able to uncover the complicated and often hidden network of people who made a difference to their lives.

Support came in various forms, had assembled organically, and consisted of obvious inclusions (such as GPs and children), as well as hidden surprises (such as staff in a supermarket).

The next slide gives you the chance to explore some of the support networks in more detail.

Click the buttons below to explore the support networks of four of the patients who took part in this study. People closest to the centre of the network provide the greatest support.

Next slide

6 SUPPORT NETWORKS

This person has a close friend who supports her around the house with chores she cannot do due to arthritis. She has a lot of different health care professionals supporting her, but the network is disjointed. She has two sons who don’t provide much practical support, but she feels their presence is important to her.

Close friend

Osteopath

GP

Other friends

Neighbours

Son & family

Osteopath’s receptionist

Physio 1

Physio 2

Physio 3

Other friends

Son & family

This person has a strong and close network of support around him. His wife is considered his main carer, and he has some close friends, including one friend with whom he regularly watches football on the TV. He knows a lot of people in his neighbourhood; every trip out is an opportunity for social interaction.

Heathlands Village for the Elderly

Wife

DaughterLeisure centre

Friend (watch football together)

GPWith no family members to support them, this person relies heavily on one friend who is currently out of work. The friend’s family has become their own family. This person worries about what may happen if his friend gets a job and can no longer support him as often.

Close friend

Friend’s mumFriend’s friend

Neighbours

Community organiser

Social worker

GPMuch of this person’s support comes from the local temple, where they spend a lot of time. The temple is their social network, and is a place to go every day to spend time with friends, whom provide emotional as well as practical support.

DaughtersSon

Sister

Priest

Pharmacist

Diabetic friend

Neighbours

GP

Nurse

Retirement group

Occasional friends

Morrison'sstaff

Age UK ‘Phone friends’

7We observed an obvious absence of discussion about care and care needs within the home and the healthcare system. In the home, care is often provided informally by family members, and there is no template for a structured discussion. Within the medical setting there is no trigger for discussion and the wider context of someone’s overall care needs is often absent. This means that some people and their families aren’t getting the support they need.

SUMMARY

We have observed that small achievable changes can have a great impact on patients’ well-being, and that well-being, hope and aspiration play a crucial role in helping this group manage their long term conditions.

However, patients are only managing their long term conditions to the best of their abilities: the system feels disjointed, contradictory and not set up for dealing with their complex needs. During interactions with healthcare professionals, patients can feel infantilised, which undermines the work they’ve done to manage their conditions. Person-centred care has been discussed for years; however, we observed that it isn’t yet being felt ‘on the ground’ by this group of people.

Support networks are complex, surprising, and family structures are changing. Patients are having to grapple with changing identity, role reversals, dependency and physical barriers to doing what they used to do. This all has an effect on patients’ physical and mental wellbeing and coping mechanisms, and also impacts their carers and how supported they feel. We have seen that understanding the patient AND their family unit/members is key to discovering how to best meet the needs of patients with long term conditions.

Meeting these people’s social care needs is fundamental in helping them to live better, and manage their long term conditions, and potentially save huge costs in acute admissions. What we have observed, however, is that this group of people is likely to have unmet care needs due to the burden they feel they already are within their family and on society more widely. This is exacerbated by the absence of any proper discussions around care and care needs, either within the home or in a medical setting.

PUTTING THEFINDINGS INTOPRACTICE

ROUNDTABLE DISCUSSION HIGHLIGHTSOn 21 September 2015, a group of leaders from the health, care, social care and charity sectors spent a morning reviewing the key findings, in order to discuss what this means for services in the broadest sense, based on their practical and policy experience. The round table was attended by 15 people* and chaired by Ipsos MORI Chief Executive Ben Page.

The key discussion points raised were as follows:

• In the eyes of patients, systems do not work well together, increasing cost in the NHS, social care and housing;• There is a need for more time to be made for patients, their carers and their families to discuss their needs and goals;• Episodic hospital appointments and 10 minute GP appointments are inadequate for this group of hundreds of thousands of

people;• Patients’ need to appear independent; they can feel that they are a burden on their families, friends, and likewise the health

and social care system.  This may hinder their ability to ask for help from inside the home and within the system;• There needs to be more focus on how to aid patients to achieve their self-defined goals, rather than on their conditions;• Listening skills and health coaching among HCPs could be simply improved, to better understand patient concerns, self-

efficacy and support structures;• Patients need to be helped and encouraged to use their own skills and resources for self-management;• There should be better organised and integrated volunteer schemes for patients with long term conditions;• Stratification and segmentation tools should be used to understand the needs of different patient groups, in order to better target

services and be more efficient.

* A list of the people who attended the round table discussion can be found at the end of this deck.

During the discussion as summarised above, the group spent some time thinking about the aim of the project, and discussed ways to help health and care economies design their future services effectively, in order to meet the identified needs of people living with multiple long term conditions, as well as the needs of their carers.

The key ideas that were generated range from long-term investments, to actions which could be implemented immediately. They fall broadly into the five buckets below. Click each one to find out more.

IMPLICATIONS FOR SERVICESNext slideInvestment:

• Give everyone a tablet computer to improve access to information and telehealth• Invest in better knowledge management• Improve understanding of the needs of people with multiple long term conditions for resources

like 111 and NHS Choices• Consider posts that can handle queries and signpost people effectively • Create virtual wards using IT better

Systems / rewards:

• Make medicine reviews by pharmacies routine • Make care and support planning an intervention and measure it• People need support within their own homes. GPs are over-stretched. Expand resources in

social care and use a greater breadth of professional skills across the health and care system• Create an affordable reward scheme for those who support people with long term conditions• Suspend Quality and Outcomes Framework for 3 years to create the headroom for change• Make more use of other public sector workers in the community such as Fire Service, Post

service etc.

Health care professionals training:

• Upskill professionals with health coaching and motivational interviewing skills, to enable them to better communicate with patients

• Rejuvenate the ‘Ask 3 Questions campaign’, which promotes shared decision making between patients and professionals

Understanding patient groups:

• Construct a more sophisticated approach to patient and service selection• Use validated means to identify and measure patient activation• Focus on those who experience greatest inequality

Interactions with patients:

• Listen and learn from patients and carers: What can they do vs. where do they need support?• Sign-post people to community activities • Talk more to people about how they are managing different losses, for example physical or

social losses, changes in identity, and how to counteract this• Create opportunities for people to show they have social currency

Interactions with patients

Understanding patient groups

Health care professionals

trainingInvestment

Systems / rewards

MY DECLARATIONWe hope you’ll agree that seeing patients in their own contexts and hearing their experiences is powerful, and that you have been as moved as we have by their stories. We’d like to take this opportunity to thank the fifteen patients, their friends and family for taking part in this project; for letting us into their lives and being very open and candid about their experiences.

From presenting this project to people up and down the country and from a variety of backgrounds, we know that these stories have the ability to get people thinking about change. We’d like to hear what you will go away and do, either tomorrow, next month or in two years’ time based on this ethnographic study.

Please do so by Tweeting your declaration and joining the discussion about action for person centred care using #A4PCC.

#A4PCC

Click here to see what others have declared

NEXT STEPSAs stated in the introduction, the overall aim of this project is to help national, regional and local health and social care economies design their future services effectively, in order to meet the identified needs of people living with multiple long term conditions, as well as the needs of their carers. We have started this conversation already, and hope that the launch of this summary enables many others to do so as well.

We intend to continue this journey by running workshops, having conversations and creating healthy debate in order to co-design improvements in service delivery for people living with long term conditions.

The final report incorporating all stages will be published in spring 2016.

CLICK HERE

If you would like to get involved in our next steps, please register your interest

here.

APPENDIX

PROJECT TEAM

Beverley Matthews,

Programme Delivery Lead -

Long term Conditions,

NHS Improving Quality

Wendy Gray,National

Improvement Lead,

NHS Improving Quality

Billie Ing,Associate Director,

Ipsos MORI

Lucy Neiland,Senior

Ethnographer, Ipsos MORI

Helle Thorsen, Anthropologist,

Ipsos MORI

Debbie Lee Chan, Research Director,

Ipsos MORI

REFERENCE GROUPThe reference group met at two key stages in the analysis process and spent a day with the project team at Ipsos MORI watching ethnographic footage and discussing the implications. The results of these workshops were then taken into consideration when analysis and video-editing was being finalised. The reference group consisted of:

• John Young, National Clinical Director for Frail and Elderly• Susan Swientozielskyj, Head of Long Term Conditions, Nursing Directorate, NHS England• Kate Adlington, Clinical Fellow NHS England• Liz Payne, Senior Programme Communications Manager, NHS Improving Quality• Dr Penny Newman, NHS Innovator Accelerator Fellow, Health Education East of England• Luke O'Shea*, Head of Integrated Personal Commissioning & Person Centred Care• Rob Elias*, Consultant Kidney Doctor, Kings College Hospital

* Luke O’Shea and Rob Elias were not present at the analysis sessions, but commented on the findings independently

ROUND TABLE DISCUSSION ATTENDEESThe roundtable discussion took place on September 21st 2015 at King’s Fund, London. The following attendees took part:

• Anna Dixon, Chief Executive, Centre for Ageing Better• Ben Page, Chief Executive, Ipsos MORI• Beverley Matthews, Programme Delivery Lead - Long term Conditions, NHS Improving Quality• Billie Ing, Associate Director, Ipsos MORI• Brendan Clifford , Chief Social Worker , Dudley Metropolitan Borough Council• Debbie Lee Chan, Research Director, Ipsos MORI• Dr. Alf Collins, Clinical Associate, The Health Foundation• Dr. Katherine Rake OBE, Chief Executive, Healthwatch England• Dr. Martin McShane, National Director for Long Term Conditions, NHS England• Helen Gilburt, Fellow, Health Policy, The King's Fund• Isabel Hodkinson, Clinical lead for Care Planning, Royal College of General Practitioners• Kathryn Evans, Community Nurse Advisor , NHS England• Keith Cooper, Editor, Local Government Chronicle• Lucy Neiland, Senior Ethnographer, Ipsos MORI• Mike Burton, Editorial Director, The Municipal Journal• Nick Mays, Professor of Health Policy, London School of Hygiene & Tropical Medicine• Peter O'Reilly, Director of Prevention and Protection, Greater Manchester Fire and Rescue Service• Professor David Croisdale-Appleby, Chair, Standing Commission on Carers• Ruth Thorlby, Interim Director of Policy, The Nuffield Trust• Tom Gentry, Health Policy Adviser, Age UK

NAVIGATING

For more information about this project please contact:

HEALTH AND CARE

Beverley.Matthews@NHSIQ.nhs.uk | 07717 345 798 | @bev_j_matthews

Billie.ing@ipsos.com | 07794 335 429 | @billieing