Planned Care Patient Experience

Planned Care Patient

Experience

A research report for NHS West Midlands July 2009

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© 2009 Ipsos MORI – all rights reserved. The contents of this report constitute the sole and exclusive property of Ipsos MORI. Ipsos MORI retains all right, title and interest, including without limitation copyright, in or to any Ipsos MORI trademarks, technologies, methodologies, products, analyses, software and know-how included or arising out of this report or used in connection with the preparation of this report. No license under any copyright is hereby granted or implied. The contents of this report are of a commercially sensitive and confidential nature and intended solely for the review and consideration of the person or entity to which it is addressed. No other use is permitted and the addressee undertakes not to disclose all or part of this report to any third party (including but not limited, where applicable, pursuant to the Freedom of Information Act 2000) without the prior written consent of the Company Secretary of Ipsos MORI.

Contents

Foreword

1. Executive summary ................................................................ 2

Introduction ................................................................................................ 2

Choice ........................................................................................................ 2

Waiting times .............................................................................................. 3

Booking appointments ................................................................................ 4

Experiences of treatment ........................................................................... 4

Aftercare .................................................................................................... 5

Communication and Co-ordination ............................................................. 6

2. Introduction ................................................................................ 7

2.1 Aims and Objectives ............................................................................ 7

2.2 Methodology ......................................................................................... 7

2.3 Report layout ........................................................................................ 9

2.4 Presentation and interpretation of the data .......................................... 9

1.5 Publication of data .............................................................................. 10

3. Referral and Choice ................................................................. 12

Awareness of choice ................................................................................ 12

Importance of choice ................................................................................ 13

Information needs .................................................................................... 17

Specific information needs of the Polish community ................................ 19

4. Waiting Times ........................................................................... 22

Exploring the perceptions gap .................................................................. 22

Concerns and reassurances .................................................................... 24

Waiting to be seen on the day of an appointment .................................... 26

5. Booking Appointments ............................................................ 29

Overall perceptions .................................................................................. 29

Changing, cancelling and rearranging appointments ............................... 31

Improvements .......................................................................................... 33

6. Experiences of Care ................................................................. 36

Quality of care .......................................................................................... 36

Dignity and respect .................................................................................. 38

Quality of Information and Involvement in Treatment Decisions .............. 42

7. Aftercare ................................................................................... 47

Importance of aftercare ............................................................................ 47

Improvements to aftercare ....................................................................... 50

8. Communication and Co-ordination ......................................... 53

Conclusions ................................................................................. 55

Appendices ................................................................................... 55

FOREWORD

This research was commissioned following a postal survey in the winter of 2008 with patients

who had experienced planned care. The survey aimed to assist PCTs to improve care

pathways and fed into the development of local action plans.

This quantitative research revealed that there were variations in the experiences of certain

groups of patients, which needed to be explored in more depth. In addition, patients

expressed less satisfaction with certain elements of the care pathway and the reasons

behind this needed to be examined further. Finally, we know that certain groups of patients

are less likely to respond to a postal survey and it is important to ensure that their

experiences are fully included in our work to improve care pathways.

We commissioned this qualitative study to address these objectives. The research focuses

on the main themes which emerged during the patient survey around information and choice,

waiting times, experiences of treatment, aftercare and communication and coordination. The

research was designed to include people from a wide range of social groups and locations to

build on and enhance further the insights gained from the postal survey.

The findings from this qualitative phase of the research further emphasise the importance of

person-centred care and making sure that the patient feels fully involved in their care. The

sensitivity and communication skills of staff, the provision of meaningful and appropriate

information and after care emerge as important priorities to be considered in the further

development of planned care pathways.

The results of this research will be considered by the regional Planned Care Forum in order

to enable care pathways to be enhanced further, and to enable commissioners to understand

how the specific needs of certain groups can be more effectively addressed.

Jan Yeates

Planned Care Lead

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1. Executive summary

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1. Executive summary

Introduction

This study aimed to further develop the findings of the Planned Care Patient Experience

Survey. The postal survey – carried out in November and December 2008 – aimed to feed

into the PCT’s action plans for improving care pathways. The survey revealed that

satisfaction with health services (as well as response to the survey) is lower among some

audiences including younger people and minority ethnic groups. It is important that the NHS

explores these issues further, and therefore this work aimed to:

explore differences in satisfaction among a range of audiences and locations, to

ascertain whether there are differences in patients’ experiences, or differences in

perceptions and expectations;

engage with audiences who are less likely to have responded to the postal survey

(such as ethnic minority residents); and

explore the details of specific aspects of the care pathway.

Choice

Awareness of choice was reasonably widespread, however participants from minority ethnic

groups and some in rural locations tended to be less likely to have heard of it. We discovered

participants had mixed views on how much importance they place on choice. While most

welcomed this and thought it would lead to improved levels of care, others thought it was

unnecessary, that it was more important to receive treatment quickly. Many of those who did

not support the concept felt unable to make an informed decision. Indeed, in these cases

they felt being presented with a choice of hospital can be intimidating, and even

burdensome. This is particularly evident when it comes to choosing a consultant, most feel

ill-informed to make such a choice. As such, patients would welcome further information on

the quality of care offered in particular hospitals to help with decision making. However,

some participants were not comfortable making such a choice and held the view that all

hospitals and consultants should be of equally high quality.

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However, having a choice of date and time of hospital appointments was widely welcomed,

and emerged as particularly important for patients who have to fit their treatment in around

other commitments such as work and childcare.

Furthermore, it should be noted that the Polish community had specific information needs.

These participants found it difficult to access NHS services at all and encountered significant

language barriers.

Waiting times

Managing expectations emerged as a key issue influencing patient satisfaction with waiting

times. Patients recognise they may have to wait for treatment, and perceptions of how long is

acceptable vary. Older people appeared to have lower expectations, whereas younger

people’s expectations seem to be higher. However, older people tended to be more satisfied

with the length of time they had to wait. This suggests it may not be the actual waiting time

itself but the patient’s expectation that is the main driver of satisfaction with this

element of the health service. Thus, the NHS may wish to focus on managing patient

expectations of waiting times.

While waiting for treatment participants said they would welcome having a fixed appointment

date to be made as soon as possible and more information on their condition and how to

cope with it, all of which they thought would help to reassure them.

The main point of contention with regard to waiting times was the time taken to be

seen at the hospital on the day of the appointment. A lack of information and

understanding caused patients to feel frustrated as felt they were not told why they are being

kept waiting. Indeed, patients who seemed more satisfied with their waiting times were

often not seen faster but kept better informed of the situation

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Booking appointments

Many participants – particularly older people – preferred to book their appointments via their

GP, since they found this the easiest and most user-friendly method. However, some

participants – particularly those in social grades ABC1 were happy to book their appointment

online, and found this quick, easy and convenient. Across all discussion groups participants

said they encountered difficulties with reception / administrative staff when booking

appointments. Many said they thought staff were sometimes rude and could make booking

appointments difficult. This emerged as a particular issue for participants who do not have

English as a first language.

If an appointment had to be cancelled, some participants experienced difficulties rearranging

it. In particular, those who do not speak a good standard of English, such as the older Urdu

female participants said they struggled to rearrange their appointments, and did not always

find administrative staff helpful.

In terms of improvements, participants would welcome the opportunity to choose

appointment times in order to fit around other commitments. Furthermore, some participants

suggested that fining patients who fail to turn up for an appointment could reduce the number

of cancelled appointments and speed up waiting times.

Experiences of treatment

The attitude of healthcare staff emerged as a key driver of satisfaction with experiences of

treatment. Most speak highly of medical staff, but less favourably of administrative staff, who

are generally not thought to be as helpful as they would have liked. In particular, people

speak highly of their consultants; however, it is notable that some participants felt the

consultants could be ‘arrogant’, and do not always have a good bedside manner. However,

most participants said they felt they were treated with dignity and respect, and that staff

were, for the most, part caring and considerate.

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However, the sensitivity of staff emerged as an area of contention among some of the

minority groups we spoke to. In particular, some of the participants from minority ethnic

backgrounds felt some staff lacked cultural sensitivity, made assumptions about them

based on the colour of their skin, and did not appreciate the importance of their religion.

Participants emphasised the importance of healthcare professionals explaining their illness

and any treatment they would be undertaking – they felt that understanding the treatment

process helped to put them at ease. Indeed, patients who say they were kept informed

were more likely to say they were satisfied with the care they received. Not all

participants felt this information was explained clearly, although most conceded that they

were usually provided with information if they asked for it, but felt that the onus was on them

to be pro-active and ask questions. These participants said they would welcome written

information such as leaflets providing information on their condition / treatment that they

could take away and read to enable them to consider any questions they had before their

next appointment.

Aftercare

Aftercare was regarded, across all the groups, as extremely important to helping patients

recover after treatment. However, participants’ experiences of aftercare varied across the

groups but most said it was inadequate and they felt let down by this. There tended to be

more positive experiences where participants had received physiotherapy. Many participants

said there was not enough support provided after treatment and they would like to have

received follow-up contact from the hospital. There was some feeling that it was left up to

the patient to be pro-active about their own aftercare.

Suggestions of follow-up phone calls or letters from the hospital were put forward as possible

improvements to aftercare provision. In particular, it was felt that support in the weeks after

treatment was important to reassure patients. Further to this, a longer-term check up system

was also recommended to provide additional reassurance. Similar to other elements of care,

information was seen as key to patient satisfaction, with participants keen to receive as much

information about their condition and how to cope as possible. Participants said they were

more likely to be concerned as they did not know what to expect after treatment and thought

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this could be addressed by providing simple directions or a list of things to watch out for in

the weeks after treatment.

Communication and Co-ordination

Good communication amongst healthcare professionals was regarded as very important

particularly surrounding aspects of care such as allergy advice. Many participants felt their

treatment was well co-ordinated and that healthcare professionals did communicate well with

one another. However, some participants thought this was inconsistent and that some

elements of their care were well co-ordinated but that there could be a lack of communication

regarding others, for example their notes being updated. There were some cases where poor

communication led to a lack of confidence in their treatment. In particular, this was an issue

for those with more experience of the healthcare system; older people and those with long-

term health conditions

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2. Introduction

2.1 Aims and Objectives

This study aimed to further develop the findings of the Planned Care Patient Experience

Survey. The postal survey – carried out in November and December 2008 – aimed to feed

into the PCT’s action plans for improving care pathways. The survey revealed that

satisfaction with health services (as well as response to the survey) is lower among some

audiences including younger people and minority ethnic groups. It is important that the NHS

explores these issues further, and therefore this work aimed to:

explore differences in satisfaction among a range of audiences and locations, to

ascertain whether there are differences in patients’ experiences, or differences in

perceptions and expectations;

engage with audiences who are less likely to have responded to the postal survey

(such as ethnic minority residents); and

explore the details of specific aspects of the care pathway.

2.2 Methodology

In order to meet these objectives, we carried out a programme of 16 discussion groups,

with residents in the West Midlands SHA region. Participants for the discussion groups and

in-depth interviews were recruited face-to-face by Ipsos MORI recruiters, each group

comprising around 10 people. Quotas were set on gender, age, social grade, and ethnicity.

The locations and groups of people we opted for were intended to broadly cover different

groups across the West Midlands to include as wide a spectrum of residents as possible.

Some locations and groups were derived from the planned care survey, looking at areas

where there were differences in experiences which needed further investigation. The areas

were selected to ensure we included a mix of affluent and deprived areas as well as rural

and urban areas. Fieldwork was carried out between 14th May and 30th June 2008 (a break

in fieldwork during local elections).

Each discussion group lasted approximately 90 minutes, and was led by a moderator who

used a discussion guide (please see the appendices).

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2.2.1 Audiences and recruitment

The following table shows a summary of the discussion group audiences and locations. All

discussion groups consisted of a good mix of male and female participants (except where

stated) and all participants had been referred from their GP for treatment at a hospital.

Italicised locations were groups consisting of patients with long-term health

conditions.

Location Age Additional quotas such as social grade or ethnicity

Stoke 16-34 C2DE

N. Staffordshire (rural) 55+ ABC1

N. Staffordshire (rural) 35-54 C2DE

Coventry 55+ C2DE

Coventry 20-45 Punjabi speakers

Solihull 55+ C2DE

Solihull 35-54 ABC1

S. Birmingham 46+ Female Urdu speakers

S. Birmingham 16-34 ABC1

Herefordshire (rural) 55+ ABC1

Herefordshire (rural) 16-34 Any social grade

Shropshire (rural) 16-34 C2DE

Shropshire (rural) 35-54 ABC1

Heart of Birmingham 46+ Male, Gujarati speakers

Stoke 35-54 South Asian

Heart of Birmingham 16-45 Polish speakers

For a definition of social grades please refer to the appendices.

Where we had a sufficient number of leads, we used the data from the re-contact question of

the Patient Experience Survey as a starting point for recruiting for the discussion groups.

However, due to insufficient leads, most groups were recruited face-to-face in the local areas

using the on-street recruitment method.

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We encountered no difficulties recruiting 14 of the 16 discussion groups. However, initially

we found it difficult to engage with the Polish community; we found that only a small

proportion of those we contacted had been referred to hospital for treatment, and it took

some time to build sufficient links with the local communities to use these leads to ‘snowball’

to others. Furthermore, we initially encountered difficulties recruiting people of South Asian

origin in the Stoke on Trent area, which may relate to media reports of tensions in the local

area at that time. To counter this we employed a South Asian recruiter who found it easier to

engage with and recruit South Asian residents.

2.3 Report layout

Following the introduction, this report contains a more detailed commentary of the main

findings divided into six sections as detailed below.

Referral and choice;

Waiting times;

Booking appointments;

Experiences of treatment;

Aftercare; and

Communication and co-ordination.

2.4 Presentation and interpretation of the data

It is important to note that qualitative research is designed to be illustrative rather than

statistically representative and therefore provides insight into why people hold views, rather

than conclusions from a robust, valid sample. In addition, it is important to bear in mind that

we are dealing with people’s perceptions, rather than facts.

Throughout the report, use is made of verbatim comments from participants. Where this is

the case, it is important to remember that the views expressed do not always represent the

views of the group as a whole, although in each case the verbatim is representative of, at

least, a small number of participants.

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1.5 Publication of data

Our standard Terms and Conditions apply to this, as to all studies we carry out. Compliance

with the MRS Code of Conduct and our clearing is necessary of any copy or data for

publication, web-siting or press releases which contain any data derived from Ipsos MORI

research. This is to protect your reputation and integrity as much as our own. We recognise

that it is in no-one’s best interests to have findings published which could be misinterpreted,

or could appear to be inaccurately, or misleadingly, presented.

©Ipsos MORI/J35926

Checked & Approved:

Anna Carluccio

Checked & Approved:

Katy O'Malley

Teresa Worley

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3. Referral and Choice

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3. Referral and Choice

This chapter discusses participants’ attitudes toward choice. As well as exploring

experiences of being offered choice it discusses the importance of choice and the

information participants feel they need in order to make an informed choice.

Awareness of choice

Most participants – but not all – were aware that their doctor should offer them a choice of

hospitals for treatment for elective care. However, as shown in the survey, awareness of this

choice does vary. Participants from minority ethnic discussion groups (specifically Punjabi

and Urdu speaking participants’ as well as the Polish and South Asian participants) were less

likely to be aware that they were entitled to a choice of hospital. Furthermore, and in line with

the findings from the postal survey, ethnic minority patients were less likely to have

discussed their choice, but would have liked to have been more involved. Similarly, people

who live in more rural areas also seemed less familiar with the concept, which they felt was

due to having fewer hospitals within reasonable travelling distance.

We never heard anything about a choice. We never been asked would

you like to go somewhere else.

Female, South Asian, Stoke, age 35-54

I was just referred by my GP.

Female, Punjabi speaking, Coventry, age 20-45

There is no choice of which consultant you can see at the hospital, but there should be a choice available

Male, Punjabi speaking, Coventry, age 20-45

Some of those who were not aware of choice expressed surprise at the concept. When

explained, most of these participants reacted fairly positively to the idea, since they tended to

expect they would always be told by their GP where to go for treatment. Indeed, most of

those who did know of choice had been made aware of this when at their doctor’s, and were

pleasantly surprised to be offered choice.

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I was actually really impressed. My assumption was when I went to the

doctor that I‟d just be given a time and place to go… and I had a choice of

three hospitals so I rang the appointments person and they said, which

one do you want to go to? I said –[XXX] and they said „okay, do you want

to come on this date, this date or this date‟? And I was like „oh okay I‟ve

got a choice‟. And that way I could arrange my surgery around the rest of

my life so that was really convenient, I was really impressed with that.

Male with long-term condition, Shropshire, ABC1, age 35-54

I thought it was a new law that came in from about April or something

where you can choose anywhere in the country can't you now?

Female, South Birmingham, ABC1, age16-34

Of those who were aware of choice, most found out via their GP, and others had heard it

mentioned in awareness-raising local media campaigns, such as adverts on public transport

and on the local radio.

I didn't realise it [choice] had been running for three years. I'm hearing it

on the radio and they were doing an advert campaign

Female, South Birmingham, ABC1, age16-34

I became aware of it because I saw the advert on the back of a bus

Male with long-term condition, Solihull, ABC1, age 35-54

Importance of choice

However, while generally positive about the concept of choice, participants had mixed views

on how important this is. Many welcomed the concept, and placed high importance upon it,

since it was perceived as a passport to allowing patients to choose the best level of care

possible and not be provided with the default care option.

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I would say the quality of care [is the most important consideration]. So I

don‟t care about the distance, at the end of the day I want to be cured

Male, South Asian, Stoke, age 35-54

Others, however, expressed muted enthusiasm. Most participants felt that being offered a

choice of hospital is ‘nice to have’ while, for many participants, being treated close to home

and as quickly as possible was more important, particularly if they were in pain waiting for

their treatment.

They‟ve just put me on painkillers and I would imagine when I get a letter

through it‟s probably going to be another two or three weeks. So I‟ll

probably have been in agony by the time I‟d get to see one

Male, North Staffordshire, C2DE, age 35-54

Those participants who did not support the concept of choice tended to either feel unable to

make such a decision or that they would just be concerned with starting treatment, so choice

would not be an issue. Often it was older participants who did not feel they had the

information or expertise to make this choice and, as such, wanted to defer the decision to

someone they trust to make it for them, such as their GP.

I don‟t think it particularly worried me whether there‟s a choice or not, I

was quite happy to be just pointed to where I‟d get sorted


Furthermore, there was an underlying feeling that all hospitals should provide an excellent

level of care and, as such, there should be no need for choice. Indeed, some felt concerned

that if there are perceived to be large discrepancies in the standards of care between

hospitals, many patients will select the same hospitals, thus increasing waiting times there.

Reflecting findings from the postal Patient Experience Survey, participants were most likely

to say that the location of the hospital is the most important consideration that would inform

their choice. This is largely due to the knock-on effect this can have on other areas of life,

such as needing to be able to take time off work – which emerged as particularly important if

the treatment is medium to long-term. This, and the importance of practicalities, stems from a

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wish for treatment to be as convenient as possible in order to cause minimal disruption to

their day to day lives.

For me it‟s location, because I‟ve got children so I need to know that

wherever I am they can visit

Female with long-term condition, Shropshire, ABC1, age 35-54

Furthermore, and again in line with the Patient Experience Survey findings, participants say

they are more likely to want to go to a hospital that they know and have been to before or

that friends and family have been to. For many patients, in terms of reputation, word of

mouth is one of the most trusted sources of information.

You've got to know someone there, or someone that's been there said the

nurses or whatever are really good

Female, Herefordshire, age 16-34

Further to this, younger participants who, sometimes, had little previous experience and

those in the higher social grades would be more inclined to use the internet or other

resources to find out about local hospitals.

If you went onto the website if you could look up who the doctor is that

you‟re going to see or something like that, then that would help wouldn‟t

it?


Being offered some choice over the time and date of appointments was welcomed. In some

instances for example, where the patient had other commitments, such as work and/or

childcare, this emerged as more important than being offered a choice of hospital. Similarly,

being offered a choice of time and date was particularly important for people living in rural

areas, due to the difficulties these patients can face travelling to and from hospital,

particularly if they do not have their own transport.

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They said when would you prefer to come? I preferred on my day off,

and it worked out

Female, Shropshire, C2DE, age 16-34

Older people, however, who tend to have fewer commitments, placed less value on this

choice. Similarly, a choice of time and date was not quite so important to the Polish people

we spoke to, who said they would put their health first and work around other commitments

in order to ensure they were able to attend appointments.

I don‟t think it matters so much if you are retired like I am because then

your time's your own

Male, North Staffordshire, ABC1, age 55+

For most participants, being offered a choice of consultant was not felt to be as important as

the other choices discussed. While some say they would like to have access to a

consultant’s ‘success rate’, most have high levels of trust in consultants, and assume that all

are trained to a similar standard. Moreover, many say they do not feel qualified or have

enough information to make what is largely perceived to be an important decision.

I really query why on earth it should be important to have a choice of

consultant? And who round this table is probably well qualified enough to

discriminate?

Male, South Birmingham, ABC1, age 16-34

However, having a choice of the gender of their consultant emerged as important among

the female South Asian participants. In these instances, where the participants were Muslim

and said their religion was very important to them, all agreed they would be prepared to wait

longer for treatment if they could be guaranteed a female consultant.

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You don‟t know your consultants you see, unless you belong to him. You

just get referred to somebody. We don‟t know who they‟re going to be or

we‟ve got no experience of them so, for me personally as long as it‟s a

lady... I‟d wait longer


Information needs

While the concept of choice was generally welcomed, it was felt to be largely meaningless if

patients are not able to make an informed choice. While people felt able to make decisions

about the time and date of treatment if offered this choice, many felt less comfortable with the

responsibility of choosing a hospital and fewer still would feel able to make an informed

choice of consultant.

It's a wonderful thing being told I can choose where to go for my

treatment, but if I have no knowledge of what that particular hospital is

like, what the consultants are like, how can I make my decision?

Male, Solihull, C2DE, age 55+

Indeed, for some, being presented with a choice of hospital can be intimidating, and even

burdensome. Participants felt not all patients are well-placed to make a decision, especially

if they are unwell. Reflecting the high levels of trust they have in doctors and particularly

GPs, many participants – and particularly the older people and those in rural areas we spoke

to – felt they would want their doctor to make the decision or at least provide advice and

guidance. These participants feel GPs are the experts and so are best-placed to make the

right choice for them. Furthermore, patients who live in rural areas were more likely to have a

long-standing relationship with their GP and were, therefore, more inclined to trust their GP’s

recommendations.

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I don‟t feel that I‟ve got enough knowledge to make a sensible informed

choice, I‟m not a medical guy, I‟m relying on them being professional,

competent and interested in what they do


They [doctors] should know which is the best hospital that we should go

to


While they rely heavily on information from their GP, some say they would welcome more

information about the quality of care offered by a range of hospitals and consultants, and

would be keen to use this to help inform their decisions.

If they're going to give you four [hospitals to choose from] let's say to go

to I'd have a tendency to have a look and see the history of the operations

and everything… to double check which is the best hospital


I think you do need to have information about the consultants. What their

success rate is. So long as you‟ve got that information then you can

make a choice. But just given a name doesn‟t mean anything

Male, South Asian, Stoke, 35-54

However, others express a lack of trust in published information, since they do not trust

the hospitals to report data accurately, particularly if it is unfavourable.

They can print and publish what they like and you have no way of proving

it

Male, Coventry, C2DE, age 55+

In order to counter this, some of the younger people spontaneously suggested hospitals

publish patient reviews on a website. They believe the provision of online, patient-led

information would help future patients make an informed choice, based on the experience of

others.

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We could have like Wiki ratings system. Why not have reviews?

Male, Herefordshire, age 16-34

Furthermore, the participants from minority ethnic backgrounds have specific information

needs. As with other participants, they feel they need more information on health services in

order to help them make an informed choice – Polish participants for instance wanted

information on quality of care and cleanliness. However, as with the other groups they are

sometimes unsure how to access this information; this coupled with language difficulties for

first generation immigrants means they can find it difficult to use information sources such as

the internet.

Specific information needs of the Polish community

While most people we spoke to from first generation minority ethnic backgrounds

experienced some degree of difficulty with communication or accessing information, the

Polish people we spoke to found it particularly difficult to access information on the NHS.

Many are fairly new to the UK and had differing levels of English, and, as such, they found it

difficult to access basic health information about local health services, in particular online

information. They also felt that because of their appearance, healthcare professionals tended

to assume they speak English, which sometimes meant they were not provided with the

language support they needed.

The NHS should inform us about the possibility of being registered, they

should send leaflets. It would be useful to get information about how the

medical services work.

Male, Polish speaking, Heart of Birmingham, age 16-45

The people we spoke to experienced problems registering with a GP. Initially they found it

difficult to find information on how to go about this and where to find a GP, and when they did

manage this some were told the GP was not taking on any new patients. Moreover, they

cited experiences of friends and family who had not accessed NHS services at all, as they

did not know how to access them. Consequently, some gave examples of friends and family

who were unable to navigate the NHS, so had returned to Poland to access healthcare

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services there. Participants experienced particular difficulty accessing secondary care, due to

marked differences with the Polish healthcare system (where many people pay to go

privately). As such, these participants felt the Polish community would welcome basic

information, in Polish, on how to access NHS services. Furthermore, they felt that

employers would be well-placed to disseminate this information.

I tried to register with a GP, every time I arrived at the medical centre the

receptionist told me they were not admitting new patients, that they were

full and I couldn‟t register. Every time she promised to call me if it

changed but she never called me during those few months.

Female, Polish speaking, Heart of Birmingham, age16-45

I know people go back to Poland to have treatment because they do not

speak English very well and do not trust English doctors or the NHS and

know they can be treated well there. The lack of information about the

NHS services has an impact as well.


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4. Waiting Times

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4. Waiting Times

This chapter will discuss participants’ experiences of waiting times from referral to treatment

and also waiting times at the hospital, while waiting to be seen. It will explore the difference

in patients’ expectations and actual experiences, as well as investigating their concerns

regarding waiting times and how these could be addressed.

Exploring the perceptions gap

Participants recognised there may be a wait for treatment. Generally, participants expected

the referral process to take some time and some expressed the view, that as there are many

people using NHS services, this is acceptable. There were mixed views, however, as to how

long is thought to be acceptable. Some older participants drew on past experiences of the

NHS and viewed recent experiences favourably by comparison – there was a pronounced

feeling that waiting times have improved in recent years. Indeed, a few older people felt the

gap between private healthcare and the NHS is being narrowed.

With the NHS I know you've got to wait


When I was younger, it must be 40 years ago. I had a lot of trouble. I had

ulcers and things and I went to the doctor and he said it'll be 6 months for

an appointment

Female, North Staffordshire, ABC1 age 55+

As these examples given by older people suggest, they tended to have lower expectations

than younger people. Indeed, there was a suggestion that younger people had little previous

experience to draw upon. Furthermore, some people’s expectations appear to be influenced

by (often negative) media coverage and in these instances waiting times are actually shorter

than anticipated.

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The doctors usually got a rough idea when he asks you which hospital

you'd like to go to. He says you might get in sooner at this hospital or try

your local hospital. He's got an idea how long it takes. Well, my doctor

has usually said you should get an appointment within a month or

something like that

Female, Herefordshire, ABC1, age 55+,

If you've got nothing to compare to then it's a bit tricky to have

expectations


I thought it'd probably be about three months, the general perception you

get from the media and all that sort of thing, but in actual fact it worked

out quicker than that


While younger people were more likely to think the wait was too long or longer than they had

expected, often similar length waiting times were seen in a positive light by older patients.

This reflects the results of the Patient Experience Survey where younger patients were more

likely to think they should have been treated at least a bit sooner.

I thought it was going to be less and it ended up being six or seven weeks


Some younger people felt that a wait of six or seven weeks was unacceptable, but older

people often perceived this to be acceptable. This suggests it may not be the actual

waiting time itself but the patient expectations that are the drivers of satisfaction with

this element of the health service. Thus, the NHS may wish to focus on managing patient

expectations of waiting times.

Common to all groups was the notion that an acceptable waiting time depends on the

severity of the patients’ condition. For instance, most expected that someone with cancer or

another degenerative illness would be seen faster than someone with a less serious

condition. Further to this, many were aware of the NHS promise regarding cancer referrals.

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I think if it's a life threatening thing such as cancer then you need to have

it done immediately


Conversely, for non-life threatening conditions it was assumed that the wait would be longer

and most people deemed this to be acceptable and fair. However, there were differing views

on what a reasonable wait would be, ranging from around two weeks for an initial

appointment to up to twelve weeks for treatment to begin.

I would expect a minimum of 12 weeks


Personally I think a couple of weeks for your initial appointment [is an

acceptable wait]

Male, North Staffordshire, C2DE, 35-54

Concerns and reassurances

Since some participants felt they had little knowledge of the nature of their illness in the time

leading up to starting treatment, this led to some being anxious or nervous about the wait to

see the specialist. In several groups some patients also raised concerns about their

condition deteriorating during the time they had to wait to receive treatment. This led

participants to suggest that more information could be given to patients about their

condition and how to cope with it before they start treatment.

So obviously the waiting time is really important because until you've

actually seen a specialist you don't know exactly yourself what to expect

and what is wrong with you unless it's an obvious injury

Female, North Staffordshire, C2DE, age 35-54

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More information on what‟s wrong with you. What‟s wrong with you, what

are the consequences, and how you can alleviate your problem while

you‟re waiting


Many found it reassuring when they received a fixed appointment date for their

treatment. Some elaborated on this, saying it reassured them because it meant they had

something to focus on. Moreover, in the Polish group, people were concerned they may be

‘forgotten’ by their GP as they felt they had no way to guarantee the GP was referring them

to the specialist if they did not receive the letter within the given time-frame.

All the appointments are booked by the GP via the internet and I didn‟t

receive any confirmation that at a given date an appointment booking

process had started. Everything is in the GP‟s computer and I don‟t even

know if they have booked the appointment. Once or twice he showed me

during the appointment that he had booked the specialist appointment but

in most cases I was not informed at all.

Female, Polish speaking, Heart of Birmingham, age 16-45

Therefore, some suggested GPs could give patients more advice on how long the wait for

treatment might be, in order to reassure patients and manage their expectations. It appears

that a lack of knowledge is central to patients’ concerns regarding waiting times – indeed,

many said not knowing how long the wait would be worried them most. This was also

highlighted in the ethnic minority groups, where patients were not dissatisfied with the waiting

time but they wanted further information on how long to expect to wait, and for this

information to be as accurate as possible. Some said they would be reassured by a letter or

guidance in their own language.

I was left waiting around. If I'd had the expectation of an 18 month wait I

probably could have lived with it but not knowing and being told it's one to

two weeks, it's about managing expectations really isn't it?

Female, South Birmingham, ABC1, age 16-34

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My GP told me. He said you should hear something in five to six weeks. I

did so. So he pre-warned me how long it would be


It is hard to know how long, it can take two weeks to get an appointment

or longer. Once it took a year.


Waiting to be seen on the day of an appointment

Participants across all discussion groups mention experiencing long delays when waiting to

be seen at the hospital on the day of their appointment. Indeed, many patients found this to

be a stronger issue than the waiting time for an appointment itself. The appointment system

– of giving several people the same appointment time – emerged as a key point of contention

across all groups. Participants felt that this contributed to longer waiting times in the hospital

and were frustrated that the appointments were not staggered so they would know when to

expect to be seen. While there was some understanding that appointment times may slip if

one patient took longer with the specialist, there was general agreement that staggered

appointments would be more convenient for patients.

If your appointment is at 1.00 you won't get seen at 1 o‟clock … waiting

room full of people at 1 o‟clock you know which is daft because you‟re

working. Couple of hours off work that‟s no problem at all but when they

say can you come in at 9, and you don‟t get seen until 12.25


The thing that bugs me as well is how much, especially going every

week, how much it costs you to park when you're waiting for two hours.

Female with long-term condition, Solihull, ABC1, age 35-54

It‟s like yesterday, I had to go to Newcastle, I had an appointment for

9.30, I went to the hospital, it was 2.30 before he sees me. That was five

hours altogether… They told everyone, just come in, basically what they

told us is everyone come in at 9.30. There was about 100 people sitting

in the waiting room, getting stuffy and having people passing out.

They‟ve got a drinks machine but the drinks machine‟s £1 a drink

Male, Stoke, C2DE, age 16-34

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A lack of information and understanding were common causes for frustration as patients felt

they were not told the reasons why they are being kept waiting, which led to further

dissatisfaction. Indeed, those patients who seemed more satisfied with their waiting

times were often not always seen faster but kept better informed of the situation. Some

participants suggested displaying how long the wait will be and apologising to patients about

the wait may help to improve satisfaction.

I have waited about an hour but they always go put up on the board how

long you will be waiting.

Female, Solihull, C2DE, age 55+

And say I'm sorry, we are going to be late. The doctor's been held up or

there's something that, an emergency's happened. I think if you're aware

of that you would sit back and just bide your time.

Female, Herefordshire, ABC1, age 55+

Furthermore, some of the younger people found not knowing how long they would have to

wait on the day of their appointment particularly difficult given the knock-on effect it can have

if they have to take time off work for treatment. Additionally, parking fees were another

controversial issue linked to the time taken to be seen at the hospital, since they increase

whilst the patient waits to be seen and are already generally regarded as an unfair

inconvenience for patients.

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5. Booking Appointments

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5. Booking Appointments

This chapter discusses patients’ experiences of booking appointments, exploring preferred

methods and how easy or difficult they found this. It will also look to examine any difficulties

they experienced and suggestions they made for improvements.

Overall perceptions

Participants used a variety of methods to book their hospital appointments. While some

patients booked in person when at the GP surgery, others used the telephone and some

participants say they booked their appointment online. Many participants said they

experienced difficulties getting through on the telephone. However, many (particularly

participants in social grades ABC1) were positive about the experience of booking

appointments online since it was regarded as quick and easy to use. Participants,

particularly older ones, did feel, however, that since not everyone has access to the internet,

the benefits of this system are not always wide-reaching.

Very simple I just made a phone call and booked a time that was

convenient to me, so it fitted in around my working schedule


I know everyone probably hasn't got internet access but the online

booking service is excellent because you can email and you'll get a reply

fairly quickly


However, some older participants had limited knowledge or awareness of booking

appointments over the telephone or online, meaning they were more reliant on their GPs to

make the appointments. Indeed, older patients often preferred to book appointments directly

through their GP because they were more familiar with system and found it easier. They also

found it reassuring to be able to see it being booked for them.

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I wouldn‟t know how to book an appointment at hospital unless I went to

my GP first

Male, North Staffordshire, C2DE, age 35-54

If you haven‟t, if you're not online at home, which I'm not then your GP

just, he knows the way round the system, he just logged on, clicked on it

and it was there on the screen, so I was actually looking at it five seconds

later. And he said there, you are, you'll get a letter.


On the whole, participants were positive about the variety of methods for booking

appointments, since they offer a reasonable choice and most patients did not encounter

problems using them.

However, many participants across all discussion groups said they encountered difficulties

with reception / administrative staff. Many said they thought staff were sometimes rude

and made booking appointments difficult. In particular, some people in the foreign language

groups found reception staff particularly difficult to communicate with, especially when there

was no translator present. Polish participants even said they had to ask a friend to make the

call on their behalf, since they could not communicate effectively with the telephone

operators.

Whenever I had to book an appointment I had problem with this as my

English is not very good. In most cases I asked my friend to book an

appointment on my behalf.

Female, Polish speaking, Heart of Birmingham, age 16-45

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Changing, cancelling and rearranging appointments

Most participants agreed that cancelling appointments was straight-forward. Many patients

said they were easily able to do this over the telephone and did not encounter any difficulties.

Again, the only problem that some participants encountered was the perception of the

rudeness of some reception staff.

Mine was really easy. To make the next appointment you just arrange it at

the end of the session with your specialist and she opens the diary and

you just arrange what's convenient. So I think that's quite good. And she

just always says, if you need to cancel just give me a ring, make sure you

quote your little reference number, so it's quite easy


Cancelling is well easy. They get a bit abrupt on the phone with you

though

Female, Stoke, ABC1, age 16-34

However, participants across all discussion groups regarded re-arranging appointments as

more problematic. In particular, these participants raised concerns about the impact

cancelling an appointment may have on the time they have to wait for treatment. However, a

few patients did cite experiences where they simply called and re-arranged without this

impacting significantly on their overall waiting time. This positive experience was more

evident among some of the older people we spoke to, perhaps since participants in these

groups tend not to have work or child commitments and so are often more flexible with

regard to rearranging appointments. Some older participants also mentioned having various

other appointments, which could also mean they are more accustomed to accommodating

healthcare commitments in their lives.

I had a bad experience for a cancellation. You know the last year … on

Friday, and my appointment was half past one. So I have to go up to

mosque Friday at half past one. I thought no I will have to cancel but

they said you‟ll have to wait another two and a half months


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I have and it's been fine. They just said, well when else do you want it

then? Give me another date, fine

Male, Herefordshire, ABC1, age 55+

Furthermore, some participants in the foreign language discussion groups experienced

difficulties rearranging appointments. In particular the older Urdu female participants said

they struggled to rearrange their appointments, since they were less likely to have even

rudimentary English. Some of the foreign language participants were also unsure of the

process surrounding cancelling and rearranging appointments. Further to this, they felt it

was important that the process was explained clearly to them by staff in their own language.

However, again they cited problems communicating with reception staff and felt staff

attitudes were not always helpful.

People are particular about keeping their appointments. If you miss one

you have to go all the way back to the GP again.


Calling the reception staff to book an appointment is always a big problem

for me. It is very difficult to understand them. I need to ask them to ask

them many times to say things again. Sometimes they get agitated by this

and they do not want to repeat what they have said.


The younger participants and people living in rural areas complained of situations where the

hospitals had cancelled their appointments, sometimes with little notice. This was a

particular issue for people who had arranged to take time off work or who had to make

specific transport arrangements for hospital appointments. Indeed, some participants felt

very dissatisfied where hospital appointments had been cancelled at relatively short notice

on several occasions.

I think it's bad also when you do actually get an appointment through and

it's some time in the future. Then a week or two before you'll get a letter

through the post and it'll change that appointment and now you haven't

got transport. And you've arranged somebody else to take a day off work

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to take you to the appointment and it can be changed just like that at

relatively short notice


Improvements

In light of this, participants had some suggestions for improvements. Common to all

discussion groups was the notion that being able to pick your own appointment time and

date was important, as it means appointments are more convenient for the individual –

particularly those who have other commitments to consider. Similarly, flexibility in

appointment times was important to many, as they may need to make arrangements for

childcare or transport in order to attend their appointment.

Several patients suggested being able to see a calendar and pick an appointment time from

this as it would allow them to see what weekday the appointment would fall on and also

could trigger them to remember prior commitments at the time rather than having to

rearrange later.

Being able to book another appointment with the receptionist when already at the hospital

was also mentioned as a possible improvement, and some patients were pleased to be able

to do this already. In particular, some patients with long-term health conditions thought this

would be more convenient and preferable. Many patients, including those with long-term

health conditions, also suggested introducing reminders either in letter format or potentially

sent to their mobiles via SMS.

I'd like to be able to book an appointment when I'm actually at my

previous appointment because I don't see the point in them sending me a

letter when I'm standing there

Female with long-term condition, Solihull, ABC1, age 35-54

Finally, in order to reduce the number of patients cancelling appointments, it was suggested

in some groups that a fine could be introduced for people who do not turn up for their

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appointment. Furthermore, the idea that patients on the waiting list could swap appointments

was also put forward in the South Asian group – if a patient could not make an appointment it

could be offered to the next person on the waiting list.

My dentist is in Birmingham and there's a big sign as you walk in, late or

cancel, late or not turning up is a £10 fine


The good option would be to swap the appointments. Like if I told them,

I‟ve got an appointment tomorrow, probably do a swap with him rather

than pushing me further down the line. I think swapping around with the

next person who is not that far away from the queue probably would be a

good option


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6. Experiences of Care

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6. Experiences of Care

This chapter discusses patients’ experiences of treatment. It explores in detail patients’

experiences of staff and information, since these emerged as the key drivers of satisfaction

with the level of care patients received.

Quality of care

Participants had polarised views on the quality of care they received. Many reported

excellent standards of care, but others cited bad experiences where they had felt uncared for

by staff or had been left with little information about their treatment. The following chart

shows some of the key ‘top of mind’ words and phrases people spontaneously used when

thinking about the treatment they received:

Quality of Care – What people thought

Negative Positive

Horrible bedside manner

Arrogant

Easy to talk to

Embarrassing

experience

Inconsiderate of

religious beliefs

RespectfulStandard

Fair

As expected Very caring and

considerate

Explained things

well

Uncomfortable

Unhelpful nursing staff

Took the time to help

Reassuring

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Participants recognised the pressures the NHS faces in terms of funding and resources.

Some participants had taken this on board when considering the quality of care they

received, and most conceded that they received a professional service.

It wasn't a pleasant experience, it goes without saying but it was very

professional


Reflecting findings from previous Ipsos MORI research into the NHS, a key driver of

satisfaction is the attitude of staff, and whether or not people feel they were treated with

dignity and respect. Indeed, we found that older people tended to be more forthcoming with

praise for the care they received, and that younger people were less likely to be impressed

by the service they received. This is consistent with results from the postal Patient

Experience Survey.

Considerate and kind and excellent treatment


They were courteous, empathetic


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Dignity and respect

In line with previous Ipsos MORI NHS research, people tended to speak more highly of the

medical staff than of administrative staff. Indeed, administrative staff are often perceived as

‘gatekeepers’ to the medical staff and participants felt administrative staff, such as

receptionists, were sometimes impolite, unhelpful and rarely willing to ‘go the extra mile’ to

help patients in the same way that medical staff were perceived to.

Getting past the receptionist, the administrator… these are the people

who don't seem to have any care for the job


Reception is very bad. I went in to see my GP and asked „When is the

doctor available?‟ He said come back in half an hour, I‟m so busy. What

am I supposed to do? I had no choice but to leave and come back.

Male, Gujurati speaking, Heart of Birmingham, age 46+

Participants had mixed views of nurses. On the whole, most people reported positive

experiences, since nurses were thought to work hard, provide a good level of care and,

importantly, were felt to have a considerate and caring attitude towards patients.

Therefore, where views of nurses are more negative, it tends to be because they are not felt

to be providing an appropriate level of consideration and attention to patients.

I think the thing that I thought was best was the care and consideration, I

had local anaesthetic and whilst the anaesthetist is doing that the other

nurse was there and she‟s just gentle trying to keep me, stroking my hand


There's four nurses. They'd been sitting in this side room and they're just

laughing and joking between themselves


Similarly, people tended to speak very highly of the level of care they received from their

consultant or specialist and have high levels of trust in these professionals. However, some

patients did feel that specialists can at times be ‘arrogant’, and believed that the importance

of a good bedside manner is sometimes underestimated by the medical profession.

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His bedside manner was horrible… I went to see another consultant and

he was brilliant.. he was always making … check up to see how I was

getting on.

Male, Stoke on Trent, C2DE, 16-34

These participants felt that interpersonal skills should be a mandatory part of all medical

training, since it impacts so significantly on the quality of the patient experience.

I know sometimes doctors do lack a bit of bedside manner and I think it

should be compulsory as part of their training. They can be a bit abrupt

sometimes.


Perceptions of staff sensitivity

While for the most part participants spoke positively of staff, there were several instances

where participants highlighted times when they were displeased with the level of care they

received. In most cases, this was related to a perceived lack of staff sensitivity.

We know from the Patient Experience survey that patients from minority ethnic groups are

less likely to say they feel they were treated with dignity and respect. While many people we

spoke to from minority ethnic groups report receiving good care from hospital staff, some

highlighted a lack of cultural sensitivity among some staff. In particular, some of the

Muslims in the groups felt that staff do not always realise the importance of their religion, for

instance not appreciating why it is unacceptable for a female Muslim patient to have a male

consultant present.

I don‟t think they realise how important our religion is to us and, it‟s for a

reason that we‟re saying we don‟t want a male consultant, it‟s not

allowed. They don‟t realise the significance or how important it is for, they

just think “oh well he‟s not going to see anything so it doesn‟t matter”,

they don‟t understand about the religion so how can they understand how

important it is for us. They need more understanding. ... If I knew that a

man was going to be there I wouldn‟t have gone in basically


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I wanted to be seen by a female doctor and they phoned the hospital that

I chose and told me there was only a male doctor available. I refused this

and asked to wait but they told me I couldn‟t wait as I had an infection.

She then told me to make a choice and said she would request a female

doctor but she could not give me any guarantee

Female, Urdu speaking, South Birmingham, age 46+

Furthermore, some felt staff made assumptions about an individual’s culture and beliefs

because of the colour of their skin. These participants would welcome more understanding

and cultural sensitivity from staff, for instance not to make assumptions but to ask if they are

unsure of a patients’ religion.

There seems to be this assumption that if you‟ve got brown skin you‟re all

the same… I‟m not a Muslim. And I don‟t expect the nurse or the doctor

… anyone there to write down Muslim and for me to correct them... As

Sheikhs, we do not eat Halal food. And we were handed the Halal menu


Additionally, some participants in the Urdu, Punjabi and Gujurati-speaking groups, felt that

when seeing a specialist from the same ethnic origin as them, they would have preferred to

converse with them in their native language – or for the specialist to at least acknowledge

this commonality – when speaking to them. However, participants felt doctors did not

acknowledge it and some even said they felt the doctors seemed to be embarrassed by this.

People don‟t ask and no one readily speaks Gujarati. The Gujarati

doctors that are there don‟t speak Gujarati. The translators are in the

hospital but you have to ask for them

Male, Gujarati speaking, Heart of Birmingham, age 46+

Some participants from the lower social grades (C2DE) said they did not feel medical staff

always treated them with respect. In particular, we spoke to a few participants who had been

following a methadone programme when receiving their treatment; these participants said

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they felt staff sometimes ‘looked down’ on them. Similarly, young mothers said they felt the

staff ‘blamed’ them for their situation.

Because I got pregnant, one of the senior staff nurses said to me that it

was my own fault for being such a child, for getting pregnant again so

quick. And them were her exact words

Female, Stoke, C2DE, age 16-24

If you‟re on heroin you get treated a lot different, they tend to look down at

you… they say it‟s self inflicted… they shouldn‟t treat you any different if

you‟re on methadone because you‟re trying to make your life better,

you‟re trying to get off the stuff


They‟re [consultants] arrogant really, aren‟t they? Some of them can be

quite stuck up.

Male, Shropshire, C2DE, age 16-34

Furthermore, one participant cited unacceptable behaviour, where staff implied they were

frowning upon his sexuality.

I went in with pneumonia but because I'm a gay man …the blatant

homophobia from that certain nurse…Not sitting there calling me a dirty

poof, but in their eyes and the way they all turned and looked. The fact

one of them said “we think you've got something nasty”. I think that‟s too

much


Older people tended to be quicker to praise staff – particularly doctors – than younger

people, and generally felt they were well looked after.

He was amiable, he told me about the problem. He says it'll take time

Male, North Staffordshire, C2DE, 35-54

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However, some felt that hospital staff may think older people are a burden due to the extra

level of care and support they sometimes need and it was important to them that they were

not made to feel this way.

I think staff get a bit fed up with the elderly people because they're difficult

to handle


Quality of Information and Involvement in Treatment Decisions

Participants emphasised the importance of healthcare professionals explaining clearly to

them their illness and any treatment they would be undertaking. They felt that being informed

helped to put them at ease and provided them with some peace of mind, since they had

more of an idea what to expect. Indeed, the quality of information participants received

appears to have influenced their overall perceptions of the quality of care – those who say

they were kept informed were more likely to say they were satisfied with the care they

received. While most people felt they would not necessarily like to make decisions

themselves, they appreciate being kept informed of how a decision about their treatment was

going to be made. Having this explained to them helped to personalise their care and helped

to make them feel important.

It's very important that that information's relayed to you. You want peace

of mind and your own expectations of how things are going to go with

yourself


The more they tell you the more at ease you'll be and then it's better for

everybody, the doctor and you


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However, there was some division over whether or not participants felt they were provided

with enough explanation of their treatment. Some participants felt doctors and specialists

were evasive about the particulars of their condition, ‘talked over them’, and would use

medical terms they didn’t understand. These participants would have appreciated staff

taking more time to convey the nature of their illness and treatment in layman’s terms.

They talk to each other about what‟s wrong with you… they use the

doctors‟ terms, which, like, you don‟t really understands half the time…

they don‟t even tell you straight to the point what‟s wrong with you

Male, Stoke-on-Trent, C2DE, age 16-34

The specialist didn‟t provide any detailed information, he was very vague


The care is often very good but sometimes they just don‟t explain at all.

Female, Punjabi speaking, Coventry, age 20-45

Most participants conceded that they are usually provided with information if they ask for it.

Indeed, many said they felt the onus was on them to be pro-active and ask questions about

their condition and treatment if they did not understand. These participants tended to feel that

when they asked, their questions were answered well. However, some people were less

comfortable with asking, in some cases they lacked confidence and in other cases they were

simply not well enough to be pro-active. Younger people in particular seemed less inclined to

feel comfortable asking questions and this was reflected in the postal survey where they

were more likely to think their treatment was not clearly explained to them. Across all groups,

when asking questions, empathy from the healthcare professionals and not being made to

feel ‘silly’ was vital to the patient feeling they were treated with dignity and respect.

It [the treatment] was explained to me and I was given leaflets about it as

well.


I was told from the minute I got there „till when I came out exactly what

was going on, and they even gave me a pamphlet when I left explaining

everything to me


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I have noticed an improvement, having had surgery about five years

ago… they hadn‟t told me what to do, whether I had to have a bath,

whether I got, I‟d had keyhole surgery … but this time I went in for

something completely different they told me absolutely, they explained

absolutely everything. Kept asking do you want to know, is there

anything more you want to know? I didn‟t have that five years ago


Participants welcomed written information such as leaflets providing information on their

condition / treatment that they could take away and read, since it allows them time to digest

the information in their own time. This means they feel more informed and able to consider

any questions they may have ahead of their next appointment.

They are doing it [explaining your treatment] in layman's language as

much as they can. The other helpful thing that I found out… there was so

much literature to take away and read quietly on your own which helped

me a hell of a lot


While some of the people we spoke to from minority ethnic backgrounds speak good English

and were able to understand the leaflets and ask questions, for some – in particular the

Polish people we spoke to – language emerged as a significant barrier to understanding

treatment. These language barriers could also shed light on why some ethnic minorities said

they did not think their treatment was explained clearly in the Patient Experience Survey.

I went to see my doctor and reception said my doctor was not available

so I had to see another. I don‟t understand English but my daughter was

with me and she said it was alright, she could translate. This happens

sometimes.


Continuity of care

The lack of continuity of care was in some groups spontaneously mentioned, and was a

source of dissatisfaction to some, since they felt unable to build up a relationship with the

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person. Being seen and treated by multiple specialists was not only worrying for some

people, but others say they found it tiresome and in some cases difficult to have to repeat the

specifics of their treatment.

You don't get continuity, you see one person one time and then you go

again and you see somebody else


They [nurses] changed shifts and they wouldn‟t speak to you. And the

next one would come in, and you‟d say to her something, and she‟d get

really *rsey because she‟s not quite up to date with what‟s gone on

Male, Shropshire, C2DE, age 16-34

The importance of receiving continuity of care emerged throughout the discussion groups

and is discussed further later in the report.

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7. Aftercare

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7. Aftercare

This chapter discusses patients’ experiences of aftercare, exploring how important they

perceive this to be as part of their treatment. It will also look to examine positive or negative

experiences and any suggestions they had for improvements.

Importance of aftercare

Participants across all groups felt that provision of good quality aftercare is ‘crucial’ to helping

patients recover from treatment. It is perceived to be a ‘safety net’, to ensure that patients

(particularly those who have been seriously ill) are not left on their own, unable to look after

themselves. Participants find it reassuring to know that a healthcare professional will be

checking up on them to let them know how they are likely to be feeling, how they can expect

to feel and what symptoms to look out for. In this way, participants felt aftercare is a key part

of the healing process, which is particularly important if they have been receiving treatment

for a serious illness and their life is likely to change following it.

It's a case of somebody keeping an eye on you


The better the aftercare, the quicker you‟re going to recover from what

injury you‟ve had there

Male, Stoke-on-Trent, C2DE, 16-34

When you come out you've got to get to grips with life again and your

life's going to change

Male, North Staffordshire, ABC1, 55+

While all agreed on the importance of receiving a good level of aftercare, participants’

experiences of receiving this vary. While some participants spoke favourably of receiving a

good level of aftercare, on the whole, experiences were fairly negative. People tended to

be satisfied with the medical procedure itself, however across a range of ages and social

grades many said they felt let down with the lack of aftercare provision. While some reported

having received no aftercare provision, others said they were provided with written

information on their condition (such as leaflets) upon leaving hospital. In some cases

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provision of written information was not felt to provide enough support, and these patients

said they would have been reassured if they had received follow-up contact from the hospital

such as a telephone call or letter.

I think if they made regular contact with you whether that be letters or

follow up calls. I don't know how practical that would be, consultants are

obviously in demand, but whether they've got just standard letters that

they could send out to people „saying following you up...is everything

ok?‟, if not contact this number

Male with long-term condition, Solihull, ABC1, 35-54

The participants from minority ethnic backgrounds tended to reflect experiences of the

population as a whole. In particular, the Gujarati participants emphasised the importance of

needing to know how to expect to feel and how best to look after themselves. Similarly,

participants from the Polish group said they would like to know of possible complications that

could arise following their treatment.

The follow up was nonexistent. They just said, “here's some pictures,

some exercises you can do, get on and do it”. Not “come back and we'll

see you in a few weeks” or whatever. It was “don't come back unless

you've got complications”


I must admit I did feel a little let down that I never had this follow up

appointment that I was told I would have


It's the aftercare when you're going back for check-ups, that's where it just

seems to fall apart


I had no problem since 2001 with my angina but I keep taking tablets.

And I said to my doctor „you can stop giving me tablets because they

have side-effects‟.

Male, Gujarati speaking, Heart of Birmingham, age 46+

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The GP explained, partially, the treatment but he did not give me a full-

scale explanation. I didn‟t receive any information on the plan for

treatment or what will happen in the future.


Furthermore, in some cases participants cited examples of finding it difficult to access

community-based services and felt they were left with the responsibility of being pro-active in

seeking this help and advice.

[My mum is ] diabetic, and we were told, “oh get in touch with the diabetic

nurse”. And we get an answering machine. We found it very difficult to

talk to her. To find out any issues, any changes, and she was never

checked up for that... So it‟s the actual being able to talk to somebody


However, where participants did report more positive experiences of aftercare this tended to

be when the patient needed physiotherapy. Those who had received physiotherapy were

positive about the experience; they felt they received the level of care they required when

they needed it, and felt it was an important element of their recovery.

They let me out and then I had to go back for physio and after two weeks

my leg was feeling stronger. The follow ups was very good


I had just physio more than anything because I bust my hand. I came

back for physio and then go back [after] another six weeks

Female, Herefordshire, ABC1, age 16-34

As discussed in the previous chapter, participants again argued the importance of continuity

of care. These participants would welcome having the consultant who treated them follow

through with their aftercare, to provide the opportunity to build up a relationship with them.

Moreover, participants felt this would help to reassure them since they believe there is less

chance of notes being lost or mistakes occurring if they are not repeating their treatment

history to a number of specialists and are dealing with just one consultant.

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One consultant said one thing and you go back six weeks later and you

see a different one and he says something totally different


You want to see the person that did the operation. You want continuity,

that's very important


Improvements to aftercare

Participants are keen to see improvements in the provision of aftercare. While some

participants do recognise the financial pressures the NHS faces and that it has finite

resources, they believe aftercare such as regular contact with patients such as sending

letters or calling the patient in the weeks after leaving hospital should be prioritised.

Furthermore, participants felt that aftercare should be carefully tailored to meet the needs of

the individual.

I think they should make regular contact with you whether that be letters

or follow up calls. I don't know how practical that would be, consultants

are obviously in demand, but whether they've got just standard letters that

they could send out to people saying “following you up... is everything ok?

if not contact this number”

Male with long-term condition, ABC1, age35-54

I think a phone call would be good to say “are you all right?”

Female, Coventry, C2DE, age 55+

I would have liked appropriate physiotherapy and some appointments

made to see the hospital physiotherapist to make sure it was healing and

reassure me that the swelling was normal


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Furthermore, while participants thought it was important to receive aftercare in the weeks

following their treatment, they also emphasise the importance of having some sort of longer-

term check-up system. It was thought this would provide an extra layer of reassurance for

patients.

I would like to think that at some point down the road when I've finished

my medication that I'd be re-scanned and I‟d like to know the state of play


Perhaps most importantly, as discussed in the previous section, participants would welcome

more information relating to their condition. Currently, many feel upon leaving hospital they

do not have enough information on how to best look after themselves. As such, participants

felt they should be provided with information such as:

How they can expect to be feeling now and at different points in their recovery (e.g. one

week after leaving hospital, one month etc);

What ‘danger’ symptoms to look out for;

Hints and tips on looking after themselves;

Where to go for more information and advice; and

What to do if they feel unwell.

The biggest thing, I think, with aftercare for me was not knowing


You want some post-operative information, how long is it, how long is it

„till I can go out and walk again


There's no information given properly as well… nobody told me I had to

get someone to keep shaving the back of my head. So, and then when I

went back it had gone all septic and so I had to start all over again


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8. Communication and Co-

ordination

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8. Communication and Co-ordination

Many participants had to deal with a relatively large number of healthcare professionals

throughout the course of their treatment, and some said they felt the care was well co-

ordinated, that their notes were being looked after and information was being kept safe.

These participants tended to feel healthcare professionals communicated well with each

other and that information was shared appropriately.

I'm very impressed. I think I've had eight different out-patients

appointments at [xxx] in the last year. And each patient has got a file,

mine's pretty thick. And the consultant, whoever you're under… gets this

thing out and it's got all the information about you, everything that you've

had done since you've lived in the area. And this precious package of

information comes out every time wherever you are


Others however, had less positive experiences. In some cases they cited a lack of

consistency in the system. These participants felt healthcare professionals sometimes

communicated well with each other and that care was well coordinated at times but that other

times things were allowed to slip – their notes were not updated or sometimes went missing.

This reflects the views of most participants across a range of ages and social grades. Some

felt that a lack of coordination of services and communication between staff meant that

important aspects of care such as allergy advice were sometimes overlooked, which left

participants lacking confidence in the treatment and advice of healthcare professionals. This

was a particularly important issue for those participants with the most experience of using

hospital services, specifically older people and people with long-term health conditions.

Sometimes they update your GP and sometimes they don't. Sometimes

things go missing


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You tell your GP what's wrong with you etc and then you're referred and

the consultant you see doesn‟t seem to have had any information from

your GP because they ask you exactly the same questions and you have

to explain everything all over again


I‟m allergic to penicillin and they were going to give me penicillin to treat

any infection, so. And I had the band on but no-one checked, because

my name had been wiped off the board because I changed beds. And

no-one had writ up on the new bed


The doctor said her child would be severely handicapped but when it was

born the child was free from any disability. My daughter asked why she

was given the wrong information and the doctors said the report got

mixed up with that of another child.


Mostly participants discussed communication and co-ordination with regard to how joined up

they perceived different parts of the health service to be i.e. between their GP and hospital.

Those who did comment on this with regard to their hospital stay generally did not report

positive experiences. Some felt the care was not joined up and that staff were not always

very organised.

The one hospital I was at, there was absolutely no joined up, there was

nobody in charge. I could sense it. I knew that the consultant was looking

at a series of papers and that the nurses weren't reading them.


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Conclusions

This study was designed to further explore the findings from the postal survey and has

helped to ensure that the experiences of audiences who are less likely to respond to the

survey – such as younger people and minority ethnic groups – are heard. In particular, this

piece of research has shed light on the concerns and difficulties that people who speak

English as a foreign language can have in navigating and understanding the healthcare

system. Furthermore, it has highlighted that gaps exist in terms of some NHS staff being

sensitive to the needs of people from diverse cultural backgrounds.

This research provides greater understanding of some of the public’s priorities in terms of

choice and waiting times, and reveals that many people say they would welcome improved

information provision. That many participants say they find the concept of Choice confusing –

and in some instances burdensome – suggests people would welcome further information to

help inform their decisions. Furthermore, our research suggests satisfaction with waiting

times is largely driven by how long people expect to wait and how informed they feel. In

particular some participants with English as a foreign language placed a high priority on this,

highlighting the need to ensure translation services are easily accessible. As such, the NHS

may want to carefully manage patients’ expectations of how long they can expect to wait,

both for an appointment and while waiting at the hospital on the day of their treatment, and

keep them informed of any delays and the reasons for this.

Being kept informed also emerged as important during treatment. Those who say they felt

staff kept them informed, explained their treatment to them and involved them in the

decision-making process tended to feel most satisfied with their care. Where information

about treatment is provided to patients this should be provided in a sensitive manner and in

plain English with the avoidance of medical terms where possible. In particular, translation

services may need to be more pro-actively offered, rather than relying patients to request it. If

the translations were more pro-actively offered the onus is less on the patient and they may

therefore be more willing to take it up, which could result in BME patients having a greater

understanding, and more realistic expectations, of their treatment.

Most say they would welcome improved aftercare services. Currently some feel ‘abandoned’

upon leaving hospital, and vulnerable people feel they are most at risk here. Most say they

would welcome someone getting in touch to check up on them upon leaving hospital. The

NHS may wish to provide some reassurance to patients after leaving hospital such as follow-

up letters or phone calls.

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This study also highlighted the perceived importance of the continuity of care. Without

prompting, participants in most discussion groups spontaneously discuss the importance of

having the same healthcare professionals continuously look after them. While most

recognise this is not always practical or appropriate, the NHS should be aware of the

reassuring role this can play for patients undergoing planned care.

It will now be important that Primary Care Trusts work with providers to address the

information needs of the public and patients, in order continue to improve experiences of

planned care for people from all backgrounds and socio-demographic groups.

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9. Appendices

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Appendix A

West Midlands SHA: Planned care Discussion guide

12/05/09 Topic areas, questions and probes Objectiv

e

Approx timing

Thank everyone for attending

Introduce self, Ipsos MORI, explain purpose of the discussion group.

Emphasise that no specialist knowledge is required – all opinions are valid, okay to disagree. No right or wrong answers.

Assure confidentiality (MRS Code of Conduct). No names will be used in our report. Emphasise that nothing will be passed on to specific wards, hospitals or clinicians.

Ask permission to audio record the discussion

Participant introductions

FIRST NAME, AGE, OCCUPATION, WHERE THEY LIVE / WHO WITH ETC

MODERATOR PLEASE MAKE THE FOLLOWING CLEAR TO

PARTICIPANTS:

No specific comments will be passed back to Trusts about the care

individual people have received – due to confidentiality reasons. We

will be sharing general feedback with the NHS only, Therefore if you

do have any concerns you think a particular Trust should know about

then you would need to raise this directly with the PALS team for that

Trust (Patient Advice Liaison Team) or the PCT. You can do this in

confidence. We have contact details which we will make available at

the end

As well as welcoming participants and breaking the ice, this will give group members the chance to introduce themselves

5 mins

Introduction to the research

Last year we conducted a postal survey for the NHS West Midlands, where we asked people about their

Provides participants with background and

5 mins

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experiences of using the local NHS. Some of you may have taken part in the survey.

The survey gave us a good indication of how people in the West Midlands feel about their NHS services, and this evening we want to follow this up to look at certain issues in more detail.

You have been asked to attend this discussion since you have all attended an NHS hospital in the West Midlands in the past year as either an inpatient or outpatient following a referral from a doctor or other health professional. This evening we’ll be discussing your experiences from referral from your GP through to receiving treatment. EMPHASISE WON’T BE ASKING FOR DETAILS OF PEOPLE’S ILLNESSES / TREATMENTS. THROUGHOUT THE DISCUSSION TRY TO UNCOVER OVERALL VIEWS OF THE COORDINATION OF CARE

AMONG ALL PEOPLE INVOLVED – FROM GP TO HOSPITAL.

context.

The patient pathway 1 hr 15

1. Referral and choice

At the time of your referral did you talk about your choice

of hospital for treatment with your doctor or not?

IF NECESSARY EXPLAIN: “Since January 2006, all eligible

patients referred by their GP for elective care should have

been offered clinically appropriate choices from a list of

four or more hospitals or clinics commissioned by their

Primary Care Trust”. 1

IF NO: Were you aware that you could choose where to

have treatment? Would you have liked to have had a choice

of where to go or not? How important is it to be able to

To explore perceptions of choice – how this is understood and when it is most important.

20 mins

1 If necessary continue: Eligible patients are those for whom a choice of providers should be offered for their

elective care, although in some cases the number of appropriate choices might be reduced for clinical reasons. Other patients might receive choice but they are exempted from requiring at least four commissioned options. This includes patients for whom the speed of access to diagnosis and treatment is particularly important: emergency attendances, Rapid Access Chest Pain Clinics or patients attending cancer services under the 2 week maximum waiting time and those where other aspects of choice may be more important: maternity services and mental health.

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choose? Why? IF PARTICIPANTS DO NOT THINK IT IS

IMPORTANT TO BE ABLE TO CHOSE A HOSPITAL PLEASE

PROBE FULLY ON WHY.

IF YES: who told you you had a choice? How did you feel

when you were asked to choose? PROBE: RELIEVED /

PLEASED, CONFUSED, ANXIOUS

Did you feel you wanted to make the choice yourself, or did

you want your doctor to decide for you?

How well equipped did you feel to make this choice? What

help and advice, if any, did you receive? Who gave you this

help and advice? Anyone else? How helpful was it?

How important is it to be able to choose where to have

treatment? PROBE FULLY: why? What are the advantages /

downsides?

What information do you need to be able to make a choice?

Which factors are most important when deciding where to

go? PROBE ON: DISTANCE FROM HOME / EASE OF

ACCESS, CLEANLINESS, WAITING TIMES, GOOD

PREVIOUS EXPERIENCE, QUALITY OF CARE

So far we’ve talked about making a choice about which

hospital to go to. Did you have a choice over the time and

date of your appointment or not?

How important is it to have some choice over the time and

date of your appointment? Why? Is this as important as

being able to choose where to go to receive treatment or

not?

How important is it to be able to choose which consultant

you see? Why? How would you go about choosing a

consultant?

Which choices do you think it most important to have –

To gauge perceptions of what is acceptable / not acceptable and why To understand patient experiences of using appointments system, and see where improvements can be made. To explore issues of dignity and respect. Also to explore how well patients understand, and are involved in, their treatment To gauge importance of good aftercare, and explore any current perceived gaps.

10 mins 5-10 mins 20 mins

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choice of hospital/consultant/time & date of appointment?

And what is most important – having this choice or the

speed at which you are seen? PROBE FULLY ON REASONS

WHY

2. Waiting times

I now want us to discuss briefly the time you had to wait

before you saw a specialist and started treatment.

Thinking back, can you tell me how long you thought you

would have to wait to see a specialist / consultant? What

gave you this impression?

And can you tell me approximately how long you actually

had to wait from when you were referred by your doctor to

when you first saw a specialist / consultant? PROBE FULLY

– IS THERE A PERCEPTION GAP HERE? DO PEOPLE

THINK THEY HAVE TO WAIT LONGER THAN THEY DO IN

REALITY.

At what point in the process, if any, were you most

concerned about waiting times? Why?

Do you think this length of time was acceptable or not?

Why do you say that? How long do you think is a

reasonable waiting time? why? PROBE FULLY ON

REASONS

And can you tell me approximately how long you thought

you would have to wait between first seeing the specialist /

consultant to starting treatment?

And again how long did you actually have to wait?

PROBE FULLY – IS THERE A PERCEPTION GAP HERE? DO

PEOPLE THINK THEY HAVE TO WAIT LONGER THAN THEY

DO IN REALITY.

10 mins

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Do you think this was acceptable or not? Why do you say

that? How long do you think is a reasonable waiting time?

PROBE FULLY ON REASONS

What, if anything, helps to reassure you about waiting

times? i.e. does it help or not if you know you have a fixed

appointment? PROBE ON REASONS WHY

I’d like you to tell me a bit about the pace of treatment. Did

you feel it was too slow or fast? Did you ever feel rushed or

not?

3. Booking appointments

MODERATOR NOTE: IF SHORT OF TIME SPEND JUST 5-10

MINUTES ON THIS SECTION.

I now want to ask you about your experiences of booking

appointments.

How easy or difficult was it to book an appointment?

PROBE FULLY ON ANY DIFFICULTIES AND THE IMPACT OF

THIS.

What did you like about the appointment booking system?

PROBE ON: EASY TO USE, HELPFUL STAFF, CHOICE OF

DATES / TIMES?

And what would you say needs improving? PROBE ON:

CHOICE OF DATES / TIMES, IMPROVING USABILITY

Did you have to cancel an appointment? IF YES: how easy

or difficult was this to do? Was it easy or difficult to book

an alternative?

When you arrived at the hospital for your appointment how

long did you have to wait to be seen? Was this acceptable

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or not? How long is acceptable to wait when you arrive at

hospital?

The NHS wants to reduce the amount of appointments that

are either cancelled or rearranged. How do you think the

appointment system could be improved so that it is more

flexible for patients and cuts down on the proportion of

cancelled / rearranged appointments?

4. Experiences of treatment

Without going into detail about the treatment you received

I’d now like us to discuss your overall experiences of

undergoing treatment.

What did you think about the quality of care you received

overall?

What words come to mind when you think about the quality

of care you received? GAUGE SPONTANEOUS POSITIVE /

NEGATIVE REACTIONS

To what extent did you feel your treatment was explained to

you? Do you feel the explanation was adequate or not? IF

NOT: what further information would you have liked? Why?

To what extent did you feel you understood your

treatment?

To what extent did you feel involved in making decisions

about your treatment? Would you have liked to have been

more involved or not? PROBE FOR REASONS FOR

WANTING TO BE INVOLVED / NOT

To what extent do you feel you were treated with dignity

and respect during your treatment? Why do you say that?

PROBE ON DRIVERS OF PERCEPTIONS OF DIGNITY AND

RESPECT how important is it that you feel you are treated

with dignity and respect during treatment? Why?

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5. Aftercare

What words come to mind when you think about the

aftercare you received? PROBE FOR EXAMPLES OF GOOD

AFTERCARE AND DRIVERS OF POSITIVE PERCEPTIONS.

What did you think about the quality of aftercare overall?

How important is it to receive good aftercare? Why do you

say that?

What makes you feel as though you’ve received good

aftercare? PROBE ON: SUPPORT FROM HEALTHCARE

PROFESSIONALS INCLUDING FOLLOW-UP CHECK-UPS,

INVOLVEMENT OF SOCIAL SERVICES ETC.

PROBE FOR EXPERIENCES OF POOR AFTERCARE: How

could the aftercare you received have been improved?

Warm down and close

MODERATOR NOTE: IMPORTANT TO COVER THESE

QUESTIONS. PLEASE ASK IN EACH GROUP

Now thinking back over the whole experience since you

were told by your doctor you needed treatment, how

informed did you feel about each stage of the process?

PROBE ON REASONS – WHAT ARE THE KEY DRIVERS OF

FEELING INFORMED / UNINFORMED? To what extent do

you feel the health professionals you dealt with

communicated with each other? What makes you say that?

This evening we have talked about many aspects of your

patient experience from referral, to appointments, waiting

times, receiving treatment and aftercare.

Taking all this in to account, what are they key messages

you would like us to feed back to NHS West Midlands?

Allows participants to emphasise key points and sum up.

5 -10 minutes

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And what else?

ASK IF ANY FINAL QUESTIONS

ASK IF PARTICIPANTS WOULD LIKE TO BE ON THE

HEALTH INSIGHT GROUP. THIS IS A GROUP OF PEOPLE

WHO ARE SOMETIMES INVITED TO TAKE PART IN

RESEARCH. THEY WOULD RECEIVE A NEWSLETTER

EVERY THREE MONTHS WITH RESEARCH UPDATES AND

ACCESS TO REPORTS (INCLUDING THIS ONE). THEY CAN

OPT OUT OF THE GROUP AT ANY TIME.

IF PARTICIPANTS ARE INTERESTED PLEASE TAKE THER

NAME, ADDRESS, TELEPHONE NUMBER AND EMAIL

ADDRES.

THEY CAN GO TO

WWW.WESTMIDLANDSHEALTHINSIGHT.COM FOR

INFORMATION REGARDLESS OF WHETHER OR NOT THEY

ARE A MEMBER.

THANK AND CLOSE

http://www.westmidlandshealthinsight.com/

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Appendix B. Social grade definitions

The grades detailed below are the social class definitions as used by the Institute of

Practitioners in Advertising, and are standard on all studies carried out by Ipsos MORI.

Table 4

Social Grades

Occupation of Chief Income Earner Percentage of Population

A

These are professional people, very senior managers in business or commerce or top-level civil servants.

Retired people, previously grade A, and their widows.

c.3%

B

Middle management executives in large organisations, with appropriate qualifications.

Principle officers in local government and civil service.

To management or owners of small business concerns, educational and service establishments.

Retired people, previously grade B, and their widows.

c.20%

C1 Junior management, owners of small establishments, and all others in non-manual positions.

c.28%

C2

All skilled manual workers and those manual workers with responsibility for other people.

Retired people, previously grade C2, with pensions from their job.

Widows, if receiving pensions from their late husband’s job.

c.21%

D

All semi-skilled and un-skilled manual workers, apprentices and trainees to skilled workers.

Retired people, previously grade D, with pensions from their job.

Widows, if receiving a pension from their late husband’s job.

c.18%

E

All those entirely dependant on the state long-term, through sickness, unemployment, old age or other reasons. Those unemployed for a period exceeding six months (otherwise classify on previous occupation).

Casual workers and those without a regular income.

Only households without a Chief Income Earner will be coded in this group.

c.10%

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Documents

Planned Care Patient Experience