understanding patient perspectives of the ... - greenwich ccg · contract using the year of care...

Understanding patient perspectives of the Year of Care model

June 2015

www.pickereurope.org

Picker Institute Europe

Picker Institute Europe is an international charity dedicated to ensuring the highest quality

health and social care for all, always. We are here to:

Influence policy and practice so that health and social care systems are always centred

around people’s needs and preferences.

Inspire the delivery of the highest quality care, developing tools and services which

enable all experiences to be better understood.

Empower those working in health and social care to improve experiences by effectively

measuring, and acting upon, people’s feedback.

© Picker Institute Europe 2015

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Contents

Executive summary 1

1. Introduction 3

Background 3

Aims of the research 3

Method 4

2. Current experiences and priorities 5

Current experiences 5

Factors which are important for management of LTCs 5

3. Reactions to the Year of Care model 8

Initial reactions to YoC model overview 8

Reactions to specific aspects of the YoC model 8

4. Conclusions 12

Appendix 1: Topic guide 13

©2015 Picker Institute Europe. All Rights Reserved. 1

P2948 | Greenwich CCG LTC YoC final report | AC BH | 040615 | v1.2 Protect

Executive summary



1. Introduction

This report outlines findings from qualitative research with patients with long term conditions

(LTC), exploring their views and experiences of care and support planning. The purpose of

the research was to inform the design, delivery and monitoring of the new extended LTC

contract using the Year of Care model, which will be delivered in Greenwich from June 2015.

BACKGROUND

From June 2015, provision for people with long term conditions in Greenwich will be

organised under a new extended contract using the Year of Care model. This model aims to

provide a framework for personalised care; specifically by providing:

support for self-management;

patient engagement in decisions about their care;

coordination of health and social care; and,

emotional, psychological and practical support.1

The Year of Care model incorporates a number of elements to support care planning for

people with long term conditions. This includes:

Annual screening appointments covering a wide range of checks and measurements

Results from these tests sent to patients in advance of a follow up appointment to

discuss care planning

Results provided alongside contextual information and prompts to consider topics for

discussion during the follow up appointment

A second appointment to discuss issues raised by the test results, alongside any wider

issues affecting patients, and decide treatment options

Key decisions from this consultation documented in a Care and Support Plan, to help

patients manage and review their condition

The Picker Institute was commissioned to undertake research with patients with specific long

term conditions, to better understand their current experiences and explore their views about

the Year of Care model. Findings from this research form the basis of this report.

AIMS OF THE RESEARCH

The overarching aim of the research was to understand the needs of patients with long term

conditions, specifically in relation to care and support planning.

Specific objectives for the research were to:

Explore views about current provision for managing long term conditions

Gather views about the Year of Care model

1. www.yearofcare.co.uk

http://www.yearofcare.co.uk/



Understand what other support patients with a long term condition may want

The intention is that findings from this research will be used to inform the design, delivery

and monitoring of the new extended contract for provision for people with long term

conditions, which will be delivered in Greenwich from June 2015.

METHOD

Findings are based on six focus groups with patients with specific long term conditions –

diabetes (two groups), COPD, heart failure, and hypertension (two groups). Participants

were recruited using varied approaches – attending existing patient group meetings

(diabetes), opt in recruitment via existing services (COPD, heart failure), and professional

recruitment using free-find techniques (hypertension). The groups varied widely in number

(from 2-15 participants), with a total of 38 people across the six discussions.

All discussions were structured with the aid of a topic guide (see Appendix 1).

It is important to note that this study was qualitative in nature, designed to provide rich data

about the range of views and experiences of these groups and to highlight any patterns and

typologies where they occur. Participants were purposively selected to ensure the widest

possible range of views were included. The research is not intended to provide statistical

data about these groups, or be representative of the unregistered population.

Verbatim quotes are used throughout the report to illustrate key points and findings. These

have been anonymised and all names and locations have been changed to protect people’s

identities.



2. Current experiences and priorities

This section outlines views and experiences of current provision for long term conditions, as

described by those who took part in the research. This includes a focus on issues

considered important for managing long term conditions.

Current experiences

Participants’ experiences of LTC provision varied considerably, with substant ial differences

identified between conditions:

COPD – Fairly extensive support from specialist community teams, with minimal

involvement from their GP

Heart Failure – Cardiac clinics at a GP surgery (not their own) with frequency of

appointments varying according to need

Diabetes – More diverse experiences, including specialist clinics in hospital,

specialist nurses in GP surgery clinics, or wholly GP-managed care

Hypertension – Little or no specialist support, with ad hoc monitoring and

management by GP practice nurse

Satisfaction with existing provision also varied, with individuals from all groups highlighting

examples of both good and poor care. Across the groups, however, patterns of views

suggested a link between satisfaction and whether or not people received specialist

services, and the extent to which they felt part of a co-ordinated package of care. For

example, the comprehensive support provided by the specialist COPD team was widely

praised, while the typically less extensive support for hypertension was viewed by some as

insufficient.

“Like lots of people who have a chronic illness, you tend to pick up others, like

diabetes and so on and so forth. But for the COPD team, I must say they are

absolutely fantastic and I’m learning stuff that I never knew about the… chest, never

knew about the question of exercise. Now at this stage in Greenwich, you don’t have

this sort of fall back if you have a problem with high BP.” (Hypertension group)

“Basically, you go to the doctors and it’s like, ‘here’s your tablets. I’ll phone you in a

few months and you can have your BP taken again’. There ain’t no, ‘why don’t you

come and talk to this nurse, she could change your lifestyle’. There’s none of that. It’s

‘here’s your tablet, get on with it’.” (Hypertension group)

Factors which are important for management of LTCs

People were asked to consider which factors help and hinder the management of their LTC,

and how they would ideally like to manage their condition. Responses highlighted a number

of key issues:



Relationship with healthcare professionals (HCPs) – People valued having

time to speak with a HCP about their concerns, feeling listened to and being

involved in decisions about their care. They wanted HCPs to be approachable,

treating them as a complete person with often multiple needs, and helping them

consider a range of treatment options, rather than simply prescribing medications.

“My GP is fantastic… you can talk to her.” (Hypertension group)

Continuity of care – While people expressed a preference for having a single

point of contact where possible, good communication between teams and HCPs

was equally valued. Having to repeatedly explain your medical history was

considered a waste of limited appointment time, and implied that records were not

being kept or used properly.

Accessibility – People wanted to access care when needed, and variable

experiences of service accessibility prompted strong feelings. In particular, long

waiting times for GP appointments, being unable to see their GP of choice, and

constrained length of GP appointments were cited as important barriers to

managing LTCs. This contrasted with positive experiences, such as longer

appointments with practice nurses, and the responsiveness of the COPD

specialist team emergency care, which were highly valued.

“I have actually got a very, very good doctor… but when I last phoned up to discuss

my BP and possibly thinking about changing medication, the earliest appointment I

could have was a month later.” (Hypertension group 2)

“I’ve got a named person [in the COPD specialist team] that I can ring up and if I

have an issue they will come out and see me, and very often on the same day. That’s

been fantastic. I hope I am not going to hear that that is going to change.” (Diabetes

group 1)

Information – People typically wanted to be informed about their condition and

the treatment options, both verbally so they can ask questions, and in written form

so they can take things in at their own speed and consult with others if necessary.

Crucially, any written information needs to be clear and jargon-free.

Ongoing monitoring and reviews – Proactive contact from HCPs, such as

appointment reminders and follow up letters, were appreciated; as were regular

clinics and review opportunities. Where this was not happening, people expressed

concerns that their condition was not taken seriously and that problems could be

missed. Care plans were raised spontaneously as a way to clarify next steps. This

was despite only a small number of COPD patients referring to existing care

plans.



“GP’s the first line, they’re supposed to contact the diabetic person every six months

or whenever the check-up is due. They’re supposed to send a letter or contact, but

they don’t. You have to contact them to make an appointment to see the nurse.

That’s got to be improved. Everything’s on computer. They have all the details.”

(Diabetes group 1)

Specialist knowledge vs. holistic care – People wanted to know that key HCPs

understood their condition and treatment options, but also wanted to be treated

holistically; for example, understanding co-morbidities, drug interactions, and

associated lifestyle issues. This ideal combination of specialist and

comprehensive care was acknowledged to be difficult, particularly for GPs dealing

with patients with often complex co-morbidities. However, examples of wide

ranging services being coordinated by specialist teams, such as the COPD team,

were highly praised.

“What GPs are doing is falling between two stools. On the one hand, expertise about

certain conditions and on the other hand, actually looking at you holistically, looking

at you as someone who will have a number of particular issues, and neither can

really be addressed at the moment… Sometimes the GPs are saying things that are

just not the case.” (Hypertension group 2)

Non-clinical support – Various forms of financial, physical and emotional support

were deemed to be important for managing LTCs; for example, help with claiming

benefits, accessing specialist equipment, and identifying support groups.

Participants cited positive examples of these supports that enabled them to better

manage their own care – such as learning to manage stress and anxiety, how to

monitor their own foot health, and receiving support with diet and exercise.

“When we used to have the clinics in the hospital when they used to check

everything, then once a week we used to have a session, everybody sit down and tell

us about the diet, about the food… you can learn about things like that.” (Diabetes

group 2)



3. Reactions to the Year of Care model

This section outlines people’s views about the Year of Care model, including initial reactions

to an overview of the model, and more considered reactions to specific aspects of the model.

Initial reactions to Year of Care model overview

A brief film outlining the key principles of the Year of Care model was shown to participants,

prompting mixed reactions. Views were primarily split by condition, with participants in the

hypertension groups broadly enthusiastic, seeing this model as providing more structured

support than they currently received. Conversely, some participants in the COPD, heart

failure and diabetes groups expressed concerns about losing specialist care under the new

model; in some cases, viewing the model as a cost-cutting exercise, passing management of

care from specialist teams to already under-resourced GP practices.

“You come up here [hospital] every year, normally it’s a six month period. You see a

consultant, have your tests done, get your results, a nice big sheet of the results. T he

results are then sent to your GP. What I want to know is, is this going to take a part of

that [away]? Because if it is, it’s going to be a total cock up. It’ll be a mess.” (Diabetes

group 1)

“They are trying to make a one size fits all… That’s part of the cost-cutting stink. And

one size doesn’t fit all. One size doesn’t even fit the same foot, because his condition

is different to mine, even though it’s the same name.” (Heart failure group)

However, this is not to say that views were consistent across conditions. Indeed, the broadly

enthusiastic hypertension groups included people with comorbid conditions such as COPD.

This suggests the importance of the context within which the model is discussed –

specifically, whether it is seen as something that is adding to or replacing existing care.

Reactions to specific aspects of the Year of Care model

In order to move beyond people’s knee-jerk reactions, discussions focused in more detail on

three distinct aspects of the Year of Care model: the initial assessment with a nurse or

health care assistant; the diagnostic information sent to patients; and the subsequent GP

consultation.

Initial assessment – The annual (or biannual) assessment was seen as an

improvement for those who were not already part of a regular testing or review

programme. For others, there were concerns that this was duplicating (or worse,

replacing) existing processes in separate specialist teams that currently worked well.

“I see the COPD nurse in the surgery once a year. The results go to the GP because

he’s in the same building. It all goes on my records, and as I say, I see the cardiac



nurse every month and that goes onto my records. It’s not broke.” (Heart failure

group)

In spite of these mixed views, people typically welcomed the idea of combining

multiple tests in a single appointment. Experiences of attending multiple

appointments in different locations were described as draining and inconvenient,

particularly for people with complex comorbid conditions.

“People with several conditions at once, that in your life you could actually really

come across a time when you’re in hospital two days a week, then GP, and you look

at your time in your diary and you can’t actually do anything. It just saps your energy.

It just takes so much out of you because you can’t effectively work with so many

things.” (Hypertension group 2)

However, there were questions about how combined testing would work in practice.

In particular, participants sought clarification about which conditions and tests would

be included, with concerns about whether these would be broad enough, and

whether the time allotted would be sufficient. There were also questions about the

expertise of the nurse or health care assistant in being able to carry out multiple

tests, and whether or not these tests could be undertaken in one location given the

range of equipment and skills required.

Diagnostic information – Access to test results was not currently widespread, with

people tending to hear only whether their results were normal or abnormal, and often

from a non-medically trained receptionist. For many, receiving written information

about test results was therefore a welcome change, affecting the balance of

information between doctor and patient during consultations. Combining test results

was also felt to be useful for encouraging doctors to look across conditions, rather

than focus on single issues. Having results in written format was particularly useful

for people who struggled to take in information during appointments, allowing them

time to process the information and consult with others.

“I like [having a written record] because, where I suffer from mental illness, I can walk

into the doctor’s surgery and he can talk to me for 10, 20 minutes and by the time I

walk out of there I don’t remember a word of what he’s just said… But with having

this here, I can take this to my family and say, ‘This is what they’re saying. Can you

help me understand it? Can you help me do this?” (Hypertension group)

Yet, there were a number of participants who felt this information was unnecessary,

preferring to rely on the expertise of HCPs to interpret results. One participant,

however, subsequently acknowledged that this view may reflect his fear of change

rather than a lack of interest in receiving information.



“[Test results are] academic interest only… If my cholesterol was creeping up I would

expect that whoever health professional was monitoring that would bring it to my

attention. I’m an electronics engineer. I give my health care professional a promise. I

won’t tell her how to look after my health, if she doesn’t try and fix my telly. She’s the

expert, not me… and I trust her.” [After a reminder about favourable comments

previously made about receiving written information from a cardiac nurse] “Yeah, ok,

yeah. I’m a bit resistant to change I think.” (Heart failure group)

There were also concerns that providing detailed test results could cause alarm,

particularly among those with declining health or those less able to understand the

results due to language and literacy issues, or general frailty. This was countered to

some extent by the explanation and benchmarking information provided alongside

the results, which were generally found to be useful. Although, participants wanted to

know that people with particularly bad or unexpected results could discuss these

immediately, rather than be left to dwell on the results before the appointment.

“Like my doctor will say something to me, like high blood pressure, or other medical

conditions, but not explain it, so I’ll go home and look on the internet and self -

diagnose, and everything comes up the worst, you know what I mean. So having it

there and explained properly is a lot easier to take in.” (Hypertension group)

“One of my concerns would be if you got that and you are in the abnormal category

on more than one issue. I can see that being difficult for the patient concerned of

having to wait another 10 days or more to see your GP.” (Diabetes group 1)

The prompts for topics to discuss with the GP included with the diagnostic

information were generally seen as helpful, replicating what some people tried to do

themselves prior to appointments. The list of possible topics was comprehensive,

giving people permission to talk about issues other than medication without feeling

they are wasting a doctor’s time. However, there was some concern that GPs would

either ignore the selected topics or not raise important topics because they had not

been circled by the patient.

Consultation (incl. shared decision-making and goal setting) – The idea of

having more time with a GP to review results and a written framework for discussing

care options was broadly welcomed. People also acknowledged the benefits of

reviewing patients holistically, looking across multiple conditions. Indeed, for those

with fairly limited opportunity to review their condition, this was strongly supported.

Yet, earlier concerns about whether this would be additional to or a replacement for

existing provision were raised again. In particular, people questioned whether GPs

would have sufficient time, skill or expertise to manage often complex conditions.

These concerns were largely driven by people’s perceptions of GPs services, as wel l

as their views about their current LTC provision. For example, experiences of

struggling to get appointments with GPs suggested that the service was already



overburdened, with a lack of time to cover these additional reviews in sufficient depth.

For those with a poor relationship with their GP, it was difficult to envisage having a

productive conversation, particularly given the personal nature of some of the topics.

Furthermore, for those with valued specialist services, there was a sense that GP

reviews would either add unnecessary duplication or result in the loss of existing

provision.

“I think it’s possible. I think [the model] might work very well, big improvement. [BUT]

I don’t think this is going to get sorted until GPs have more time.” (Hypertension

group 2)

“A lot of us have different illnesses, but I will assure you that I have not been to see

my GP about COPD for a long, long time because everything is sorted. If I have a

problem [the COPD team] are around in a car, usually within an hour… so the GP

has not had to have any appointments for a number of years about my chest.”

(Hypertension group 2)

Goal setting was a particularly controversial aspect of the model, with views divided

between those who welcomed the impetus to improve their health, and those who

found it challenging. For the former, goal setting was seen as a way to get both

patient and doctor to work together, drawing in support from GPs with wider issues,

such as diet and exercise. There was also the potential sense of achievement, and

even praise from GPs, if goals are met. For others, goal setting was at best an

irrelevant exercise covering ground that would have been considered elsewhere. At

worst, it could be detrimental for certain people, such as those with mental health

issues, applying external pressure on often deeply personal issues. These concerns

prompted discussions about whether this element would be optional, and whether

there would be consequences of not meeting agreed goals, such as damaging the

GP-patient relationship or even restricted access to treatment (Qp58).

“I can see this being used against you.” (Heart failure group)

“Let me give you an example. Maybe you have gone to your GP. There are

expensive medications and your GP has looked at it and thought it best you go to the

gym rather than maybe prescribe the drug… If they do opt out, are they going to

continue with that expensive medication or not?” (Hypertension group)



4. Conclusions

Overall, these findings suggest that the principles of having regular reviews with shared input

into care plans for managing LTCs are broadly welcomed; particularly if they look at people

holistically and cover multiple conditions. The model was especially well received by those

who currently have limited opportunities to review their care.

Indeed, many of the factors identified by participants as being important to managing their

LTCs are intrinsic elements of the model – time to discuss care options; being involved in

decision-making; being treated holistically; access to information and support for self -

management; opportunities to review and monitor care.

Yet, the wide ranging and often emotive responses to aspects of the model highlight the

importance of the context into which the changes would be applied. People’s views about

their current provision are fundamentally important, as are their perceptions of the GP

services which would be required deliver the new model. Change can be unnerving,

particularly so for those who currently feel secure in their care and/or have concerns about

whether GPs would be able to deliver the new model. For many, this prompts a number of

questions:

What will this change mean for my care? Do I stand to gain, or lose out?

Why is it being proposed? Who is it for? – Is it for patients, to improve care? Or to

save money?

How will it work in practice? – Which conditions will be included? Will the

healthcare professionals involved have the right skills, time and resources? Wil l I

be able to choose who I see? Will I be able to opt out if I want to?

Whether people think they will personally benefit or lose out from these changes inevitably

drives their views about the model as a whole. Fear of losing out – either by losing access to

valued services, or having to take on additional burden – can be distressing, and further

support may be required to reassure people about how the model will work in practice.



Appendix 1: Topic guide

NHS Greenwich CCG: LTC patient engagement

TOPIC GUIDE

The overarching aim of the research is to understand the needs of patients with long term

conditions, specifically in relation to care and support planning. This research will inform the

design, delivery and monitoring of a new extended LTC contract, that will be delivered in

Greenwich from April 2015.

Specific objectives for the research:

Explore views about current provision for managing long term conditions

Gather views about the Year of Care model

Understand what other supports patients with a long term condition may want

1. INTRODUCTION

Introduce self, Picker Institute – an independent charity dedicated to ensuring highest

quality healthcare for all

Research commissioned by NHS Greenwich CCG – NHS organisation responsible for

organising healthcare services in Greenwich

Background about the research – to explore patients’ views about proposed changes to

care planning for people with long term conditions (see box above for more detail)

Confidentiality – all responses are anonymous; personal details will not be recorded or

passed outside the research team

Recording – conversations recorded for quotes; no personal details will be recorded; no

detailed attribution when reporting

Discussion ground rules – want to hear views / experiences / opinions; no right, wrong

answers; no speaking over each other (for sake of recording); lots to cover and want to hear

from everyone, so may need to move things along occasionally

2. BACKGROUND AND WARM UP – explore briefly

Introductions – participants to introduce themselves

o Name

o Who live with

o What their interests are

Ice-breaker – TBC…!

3. CURRENT PROVISION



Explore views about current provision

o How do they manage their condition

PROMPT: role of GP; community health services; support organisations; friends /

family; other

o What helps / hinders how they manage their condition

PROMPT: Relationship with GP; access to support; information; care plans

Explore principles for managing long term conditions

o How do they want to manage their condition – spontaneous at first, then PROMPT:

PROMPT: Being involved in decisions; being informed about medications,

treatments, risks, side-effects, etc; opportunities to review treatment;

coordination of support; receiving emotional support; support with managing

comorbidity issues; relationship with professionals; support for family and

carers; other

o Which principles are the most important, and why

[If appropriate – could do this as a prioritisation exercise – or could just ask if there’s one that’s more

important than another]

2. OVERVIEW OF YEAR OF CARE MODEL

PRESENT 3 MIN VIDEO

READ and HANDOUT SHOWCARD A: Overview of Year of Care Model

Explore reactions to overview of Year of Care Model

o What do they understand about this model

o Do they have any questions about the model [NB may not be able to answer these, but

will pass them on to CCG team]

o What do they think about this model

What do they like about it, and why

What concerns do they have, and why

o How is this model different, if at all, to their current provision

3. SPECIFIC ASPECTS OF THE YEAR OF CARE MODEL

Explain that we are going to provide a little more information about three aspects of the model,

and ask their views in relation to each

Explore views about annual / biannual consultation with nurse

o READ and HANDOUT SHOWCARD B: Nurse consultations

o What do they understand about this aspect

o Do they have any questions about it

o What do they think about this aspect





o How is this aspect different, if at all, to their current provision

Explore views about diagnostic information

o READ and HANDOUT SHOWCARD C: Diagnostic information







Explore views about GP consultation

o READ and HANDOUT SHOWCARD D: GP consultation







o [If not already covered] How would they feel about being involved in planning their

own care in this way (shared decision-making)

How comfortable do they feel about discussing care planning with their GP

What information / support would they need to feel able to input into these

discussions – information about what; in what format; by whom (e.g. written

info about medication side-effects; discussing lifestyle factors with a nurse etc)

PROMPT: information about medications, side-effects, lifestyle, co-

morbidity; treatment risks and benefits

o [If not already covered] How would they feel about setting goals for their care (goal

setting)

How helpful do they think setting goals would be

What information / support would they need to feel able to set goals

How should the goals be used going forward

PROMPT: reviews, coordination with other support / care plans, other

2. REFLECTIONS

Explore views overall

o What do they think about the issues discussed today

What stands out

Any hopes, concerns, questions about the Year of Care model

How does this model compare to their current provision

o What else would be helpful in relation to planning their care



PROMPT: links with other support;

Any other final thoughts?

THANK AND CLOSE

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