IMPROVING THE PATIENT’S EXPERIENCE 2
COMMON THEMES FROM THE LITERATURE
Marina Roberts and Marcus Longley
Welsh Institute for Health and Social Care | University of Glamorgan
December 2009
CONTENTS
Purpose …………………………………………………………………………. 2
Generic Issues
Department of Health, England ……………………………………….. 3
Wanless Report ………………………………………………………… 4
Picker Institute ………………………………………………………….. 5
Health Foundation ..…………………………………………………….. 6
NHS Scotland ….……………………………………………………….. 7
An International Perspective …………………..………………………. 9
Signposts ..………………………………………………………………. 11
Healthcare Standards for Wales ………………………………………. 12
Particular Services
Primary Care .…………………………………………………………….. 15
Hospital Care …………………………………………………………….. 18
Inpatient Care …………………………………………………………….. 20
Accident and Emergency Services …………………………………….. 22
Nursing .…………………………………………………………………….23
Patients from Black and Minority Ethnic Communities …………..…. 26
Cancer Services………………………………………………………….. 27
Children’s Services ..…………………………………………………….. 28
Older Patients…………………………………………………………….. 30
Mental Health Services..………………………………………………… 31
Patients with Hearing Loss ……………………………………………... 36
Sight impaired patients………………………………………………….. 38
Maternity Services………………………………………………………. 39
Diabetes Services………………………………………………………. 40
Improving the Patient’s Experience 2: Common Themes from the Literature
1
PURPOSE
The term ‘patient experience’ has acquired considerable currency in recent
years as a way of encapsulating the way the NHS addresses the totality of
patients’ needs and preferences – including both clinical and non-clinical care.
It therefore embraces everything from the success of clinical interventions to
issues of access, responsiveness, choice, the state of the physical
environment of care, and much else.
Improving the patient’s experience is a high priority for NHS Wales. A lot of
research has been carried out across the UK on patients’ priorities in these
various areas. A companion paper – Improving the Patient’s Experience:
Patients Priorities for NHS Wales – reports the results of a recent exploratory
exercise across Wales to find out what aspects of the experience patients
themselves want improved.
In all of this work, it is clearly important to learn from what has already been
discovered about patients’ priorities. Accordingly, this paper summarises 28
published sources of various types, as an introduction to some of this
literature. The sources include generic studies of patients of all sorts, as well
as studies which have focused on patients’ priorities in particular settings (e.g.
primary care), and in relation to particular conditions or needs (e.g. older
patients, mental health patients). In each case, the full reference is given
(including web address where possible) to help the reader find out more about
studies of particular relevance to them.
This is not a comprehensive review of the literature. Rather, it focuses
primarily on work carried out in the UK since 2004. Editorial judgement has
been applied to the studies reported here, on the basis of what is likely to be
most useful for the intended readership: practitioners, managers and policy
makers with an interest in improving the patient’s experience.
There are two companion papers in this series on improving the patient’s
experience:
 Paper 1: Patients’ Priorities for the NHS in Wales reports the results of
a consultation exercise with patients carried out across Wales in May
2009, which focused on top priorities for improvement from a patient’s
perspective
 Paper 3: A Review of Patient Feedback Processes in the NHS in
Wales describes the range of activities undertaken by NHS Trusts,
Local Health Boards and Community Health Councils on a regular
basis to understand what patients are experiencing from their contacts
with the service, and what improvements they would like to see.
Improving the Patient’s Experience 2: Common Themes from the Literature
2
GENERIC ISSUES
DEPARTMENT OF HEALTH, ENGLAND
Background
During 2007 the Department of Health undertook work to develop the
understanding of what matters to patients, the public and staff, with an aim of
connecting the transformation of the NHS to these critical groups. It was
considered that a better understanding needed to be allied with an improved
ability to listen and respond. Being responsive nationally means using this
insight to inform new policy and practices. Being responsive locally means
having clarity about how to listen and respond to local needs. Although
considered a work in progress with further development required, four key
areas were identifiable as being important from the patient perspective.
Originator
Department of Health
Source
Department of Health (2007) What matters to patients, public and staff.
London: Department of Health
Available at
http://www.dh.gov.uk/en/Publicationsandstatistics/Bulletins/theweek/DH_0803
55
Extract
What patients had to say
Get the basics right – don’t leave it to chance
- Ensure staff are competent
- Don’t lose my notes
- Keep the place clean
Fit in with my life – don’t force me to fit in with you
- make the service easy to access
- give me convenient options
- don’t waste my time
Treat me as a person – not a symptom
- listen to me and take me seriously
- understand the wider context of my condition
- treat me with respect and dignity
Work with me as a partner in my health – not just a recipient of care
- Encourage me to keep control of the process
- Equip me to look after my own health
- Give me the support I need
Improving the Patient’s Experience 2: Common Themes from the Literature
3
WANLESS REPORT
Background
Securing Our Future Health: Taking a Long-Term View, published in April
2002 is an independent review by Derek Wanless. It was the first evidencebased assessment of the long-term resource requirements for the NHS, and
concluded that to meet people’s expectations and deliver the highest quality
service over the next twenty years, the UK would need to devote more
resources to health care and that this must be matched by reform to ensure
the resources are used effectively. In the report Wanless identified five key
patient values.
Originator
HM Treasury
Source
Wanless, D. (2002) Securing Our Future Health: taking a long term view. The
Wanless Report. London: HM Treasury.
Available at:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPo
licyAndGuidance/DH_4009293
Extract
- safe, high-quality treatment
- fast access to services
- an integrated, joined-up service
- comfortable accommodation
- a patient-centred service.
Improving the Patient’s Experience 2: Common Themes from the Literature
4
PICKER INSTITUTE
Background
The Picker Institute works with patients, professionals and policy makers
promoting understanding of the patient’s perspective at all levels of healthcare
policy and practice. Their research has identified eight aspects of healthcare
that patients consider most important, and nine areas that citizens consider
most important.
Originator
Picker Institute Europe
Source
Levy, DAL. (2008) An independent NHS: what's in it for patients and citizens?
Oxford: Picker Institute Europe
Available at:
http://www.pickereurope.org/Filestore/Publications/Picker_Independent_NHS
_Lo_web.pdf
Extract
From this and other research the Picker Institute has described eight
‘domains’ of care which are of the highest priority for patients:
-
Fast access to reliable health advice
Effective treatment delivered by trusted professionals
Involvement in decisions and respect for preferences
Clear, comprehensible information and support for self-care
Attention to physical and environmental needs
Emotional support, empathy and respect
Involvement of, and support for, family and carers
Continuity of care and smooth transition
What citizens want
-
Affordable treatment and care, free at the point of use
Safety and quality
Health protection and disease prevention
Accessible local services and national centres of excellence
Universal coverage; geographical and social equity
Responsiveness, flexibility, and choice
Participation in service developments
Transparency, accountability, and opportunity to influence policy
decisions
. . . . . A distinction can be made between what patients want as individual
healthcare users and what they hope for as citizens or taxpayers. In general,
patients care more about the quality of their everyday interactions with health
professionals than about how the service is organised. Furthermore, although
there is scope for improvement in primary care, changes that seem to
Improving the Patient’s Experience 2: Common Themes from the Literature
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undermine the founding principles of the NHS are likely to be strongly resisted
...
Improving the Patient’s Experience 2: Common Themes from the Literature
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HEALTH FOUNDATION
Background
The Health Foundation’s work in a broad sense examines quality of care. The
extract below however is taken from a report that aims to focus on one key
aspect of quality of care; that of patient and public experience. It looks at how
responsive the NHS is to the needs and wants of patients by analysing survey
data from a wide range of sources, and the public. It also assesses the extent
to which the ‘patient-centredness’ policy goal has been attained.
Originator
The Health Foundation
Source
Leatherman, S., Sutherland, K. (2007) Quest for Quality and Improved
Performance: Patient & Public Experience in the NHS. London: The Health
Foundation.
Available at:
http://www.health.org.uk/publications/research_reports/patient_and_public.ht
ml
Extract
The main sections concern two key questions: what is important to patients
and the public, and what do patients want? Data analysis shows that patients
and the public prioritise:
- information, communication and involvement in decision-making
about care
- being treated as an individual
- choice where it makes a difference
- predictable and convenient access
- equitable care and health outcomes
- being safe and protected in healthcare settings.
Findings
The report identifies several key areas that could be improved to help the
NHS become a truly patient-centred institution:
- better provision of information to and communication with
patients
- engagement of the patient in shared decision-making about
treatment options
- geographic convenience and ease of transport to health
services
- improvements in patient safety.
Improving the Patient’s Experience 2: Common Themes from the Literature
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NHS SCOTLAND
Background
In May 2005, the Scottish Government produced a report that recognised the
need for Scotland to adapt a whole system approach to improving healthcare.
One of the crucial issues that were felt would impact on the shape of NHS
Scotland was ‘What do patients expect from services?’
Originator
The Scottish Government
Source
Building a health service fit for the future, Volume 2: A guide for the NHS.
May 2005. Edinburgh: The Scottish Government
Available at:
http://www.scotland.gov.uk/Publications/2005/05/23141500/15057
Extract
Patients will demand safe, high-quality treatment with minimum variation
across the country, and will want to be active partners, rather than passive
recipients, in their care. They are likely to value 'high-tech', proactive services
delivered by staff who are at their best. They will be reluctant to wait and will
expect the service to be more joined up. If they have to go into hospital, they
will expect higher-quality accommodation and food.
They will want services that are tailored to their needs and which meet the
best standards of customer care found elsewhere. In healthcare terms, that
might mean quicker access to a health professional at convenient times.
Current waiting times for diagnosis and elective treatment are unlikely to be
acceptable. The health service will have to be quicker, sharper and smarter at
the point of delivery.
The analysis above is supported by work done by the Picker Institute, a UKregistered charity that works extensively with European healthcare providers
to obtain feedback from patients and promote patient-centred care. In its 2003
study, 'The European Patient of the Future', the Institute found that 'people
want better access to health care, better communication with doctors and
greater participation in clinical decisions affecting their own health care'
(Coulter and Magee, 2003).
The study also showed that people felt that as citizens, they should be able to
help shape health policy, and that their views on priorities should be listened
to by policy makers. Again, this chimes with the feedback that the National
Framework team received at their public meetings.
Into the future
Recent work on how wider trends in society and customer experiences in
other sectors might impact on the healthcare sector suggests that in 20 years
Improving the Patient’s Experience 2: Common Themes from the Literature
8
time, patients may be very different. The research indicated that in future
patients will:
-
be better informed
be more educated
not have enough time to get things done
be more affluent
be less deferential to authority and professionals
have more source against which to compare the health service
want more control and more choice - they will reject 'one size fits
all' services.
Improving the Patient’s Experience 2: Common Themes from the Literature
9
AN INTERNATIONAL PERSPECTIVE
Background
The International Alliance of Patients' Organizations (IAPO) is a global
alliance representing patients of all nationalities across all disease areas and
promoting patient-centred healthcare around the world. Its full members are
patients' organisations who work at the international, regional, national and
local levels to represent and support patients, their families and carers.
IAPO's vision is that patients throughout the world are at the centre of
healthcare. In 2006 they released the results of a new survey on perceptions
of healthcare among patient organisation members in ten European Union
Member States, Canada and Nigeria. Participating members demonstrated
strongly shared views on the needs and concerns relating to currently
administered healthcare signalling a need for a shift to a more patient-centred
approach. The study randomly polled 1,200 members of patient organisations
in the twelve countries. It identified three recurring themes in the findings
across the different regions that served to illustrate shared concerns related to
the accessibility of individualised treatment and healthcare information.
The findings were presented by IAPO at the international conference, Geneva
Forum: Towards Global Access to Health.
Originator
International Alliance of Patients' Organizations (IAPO)
Source
Available at
http://www.onmedica.com/newsArticle.aspx?id=1a78f1ad-69f8-4868-bc5c5d9ea3164921
Extract
Timely access to the best treatment and information
Timely access to the best medicines and information is one of the primary
concerns of patients and patients' organisations. 98% of respondents agree
that "because timing is so important in the prevention of disease, access to
the most effective medicines when you need them most is essential". The
same percentage agrees on the need for greater access to accurate, relevant
and comprehensive information to help patients and healthcare providers
make informed decisions.
Right to participate in decisions at the individual patient level
The findings also show that 95% of members of patients' organisations
demand a right to participate as partners in making healthcare decisions
which affect their lives. The same proportion of members agrees that patients
have a fundamental right to patient-centred healthcare that respects their
individual needs, preferences and values. They think that unburdening
bureaucratic restrictions on physicians would allow for a stronger physicianpatient relationship and result in the best treatment for each individual. 89% of
them argue that assuming a 'one size fits all' attitude to medicines is wrong,
since patients react differently to medications depending on many factors,
Improving the Patient’s Experience 2: Common Themes from the Literature
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including their health status, age, and physical make up. Doctors are trained
to assess all these factors and make the best decision for each individual
patient.
Patient involvement in policy-making
A third and increasingly important trend the study indicates is a strong belief in
increasing the involvement of patients as partners in shaping healthcare
policy decisions that affect their lives. Whether this occurs through direct
involvement in government-led legislative procedures and consultations or
through third parties such as patients' organisations, the vast majority support
the engagement of patients in healthcare policy decision-making to ensure
that policies reflect patient and caregiver needs. In fact, 95% of members
believe that governments should more actively take into account the views of
doctor and patient organisations, including 62% who firmly stand on this
position.
Improving the Patient’s Experience 2: Common Themes from the Literature
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SIGNPOSTS
Background
Signposts: A practical guide to public and patient involvement in Wales was
published in 2001. A joint initiative between the National Assembly for Wales
and the Office for Public Management (OPM), it was aimed primarily at those
responsible for taking forward public involvement work within their
organisations, and others whose activities might impact directly or indirectly
on the NHS. It was intended as a guide to public and patient involvement,
providing information and advice to NHS organisations about developing
public and patient involvement and how to meet the performance
management requirements of the Assembly as outlined in the NHS plan
Improving Health in Wales.
Originator
National Assembly for Wales/ Office for Public Management
Source
National Assembly for Wales; Office for Public Management. (2001)
Signposts: A practical guide to public and patient involvement in Wales.
Cardiff: National Assembly for Wales.
Available at:
http://www.wales.nhs.uk/publications/signposts-e.pdf
Extract
Improving the Patient’s Experience 2: Common Themes from the Literature
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HEALTHCARE STANDARDS FOR WALES
Background
Between November 2004 and February 2005, the Welsh Assembly
Government consulted on the Advisory Board for Healthcare Standards in
Wales’ proposal for a common framework of healthcare standards to support
the NHS and partner organisations in providing effective, timely and quality
service across all healthcare settings. The responses helped develop the
proposal and resulted in the production of Healthcare Standards for Wales in
May 2005. Setting out a range of patient-centred standards, the document is
primarily about improving the patient experience and placing patients at the
centre of service planning and delivery. Along with the development of
National Service Frameworks and National Institute for Clinical Excellence
guidance, it is intended to sustain drive to remove inequalities in health in
Wales.
Originator
National Assembly for Wales
Source
Welsh Assembly Government (2005) Healthcare Standards for Wales.
Making the connections, designed for life. Cardiff: Welsh Assembly
Government
Available at
http://wales.gov.uk/topics/health/publications/health/strategies/healthcarestan
dards?lang=en
Extract
First Domain: The Patient Experience
Standards to support the provision of healthcare in partnership with patients,
service users, their carers and relatives and the public will be based on plans
and decisions that respect diverse needs and preferences. Services will be
user friendly and patient centred. Healthcare will be provided in environments
that promote patient and staff wellbeing and respect for individual patients’
needs and preferences in that they will be designed for the effective and safe
delivery of treatment and care and are well maintained and cleaned to
optimise health outcomes for patients.
Standard 1
The views of patients, service users, their carers and relatives and the public
are sought and taken into account in the design, planning and delivery, review
and improvement of health care services and their integration with social care
services.
Standard 2
The planning and delivery of healthcare:
Improving the Patient’s Experience 2: Common Themes from the Literature
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a) reflects the experience, views and preferences of patients and
service users;
b) reflects the health needs of the population served
c) is based on nationally agreed evidence and best practice: and
d) ensures equity of access to service
Standard 3
Patients with emergency health needs access appropriate care promptly and
within national time-scales set annually by the Welsh Assembly Government.
Standard 4
Healthcare premises are well designed and appropriate in order to:
a)
b)
c)
d)
promote patient and staff well-being;
respect different patients’ needs, privacy and confidentiality;
have regard for the safety of patients, users and staff; and
provide a safe and secure environment which protects patients,
staff, visitors and their property, and the physical assets of the
organisation.
Standard 5
Healthcare services are provided in environments, which
a) are well maintained and kept at acceptable national levels of
cleanliness;
b) minimise the risk of healthcare associated infections to patients,
staff and visitors, achieving year on year reductions in incidence;
and
c) emphasise high standards of hygiene and reflect best practice
initiatives.
Standard 6
Healthcare organisations, in recognising different language, communication,
physical and cultural needs:
a) make information available and accessible to patients, service
users, their carers and relatives and the public on their services;
b) provide patient and service users with timely information on their
condition: the care and treatment they will receive as well as
after care and support arrangements; and
c) provide patients and service users with opportunities to discuss
and agree options relating to their care.
Standard 7
Improving the Patient’s Experience 2: Common Themes from the Literature
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Patients and service users, including those with long term conditions, are
encouraged to contribute to their care plan and are provided with
opportunities and resources to develop competence in self-care.
Standard 8
Healthcare organisations ensure that:
a) staff treat patient, service users, their relatives and carers with
dignity and respect;
b) staff themselves are treated with dignity and respect for their
differences;
c) informed consent is obtained appropriately for all contact with
patients and service users and for the use of confidential patient
information; and
d) patient information is treated confidentially, except where
authorised by legislation to the contrary.
Standard 9
Where food is provided there are systems in place to ensure that:
a) patients and service users are provided with a choice of food
which is prepared safely and provides a balanced diet; and
b) patients and service users’ individual nutritional, personal,
cultural and clinical dietary requirements are met, including any
necessary help with feeding and having access to food 24 hours
a day.
Standard 10
Healthcare organisations ensure that people accessing healthcare are not
unfairly discriminated against on the grounds of age, gender, disability,
ethnicity, race, religion, or sexual orientation.
Improving the Patient’s Experience 2: Common Themes from the Literature
15
PARTICULAR SERVICES
PRIMARY CARE
Background
A research article published in 1996 reported on a study that had developed
an instrument (the Patient Requests Form) to quantify the intentions of
patients attending their general practitioner. From a survey of 410 patients
three key themes were identified.
Originator
Journal of Psychosomatic Research
Source
Chowdari B.V.R.; Pramoda Kumari P.; Woloshynowych M.; Valori R.;
Bellenger N.; Aluvihare V.; Salmon P. The patient requests form: a way of
measuring what patients want from their general practitioner. Journal of
Psychosomatic Research, Volume 40, Number 1, January 1996, pp. 87-94(8)
Available at:
http://www.jpsychores.com/article/0022-3999(95)00548-X/pdf
Extract
- explanation and reassurance;
- emotional support; and
- investigation and treatment
Improving the Patient’s Experience 2: Common Themes from the Literature
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Background
The Patients Association is a national charity providing patients with an
opportunity to raise concerns and share their experiences of healthcare.
Through their helpline, correspondence and research, the Patients
Association learn of issues of concern from patients and seek to bring about
improvement in healthcare. In an article for BMJ in 2003 Mike Stone,
Director, published a list of five patient desires that were raised on a regular
basis and felt to be easily achievable.
Originator
British Medical Journal
Source
Stone, M., What patients want from their doctors. BMJ. (2003) June 14;
326(7402): 1294.
Available at:
http://ukpmc.ac.uk/articlerender.cgi?artid=610053
Extract
Patients want many things from their doctors, not all of which are possible.
Below, however, is a list of things that patients seem to want from their doctor
and which should be possible.
o Eye contact—There is nothing worse than walking into a
consulting room and not getting any eye contact from the doctor.
It happened to me only last week; I knocked on the door, to be
greeted with “Come” and to find the doctor sitting looking at his
computer screen. He continued to do so while asking why I had
come to see him.
o Partnership—Patients want to be people who doctors do things
with, not people that doctors do things to. Patients want to be
consulted about their condition, their treatment, and how things
will progress from the consultation.
o Communication—Communication from doctor to patient and
vice versa is the key to a successful consultation. Many patients
still feel that they are entering “alien territory” when they go to
see their doctor. In many cases they are scared, they don't
understand what the doctor is saying, and they are not able to
take everything in that they are told. Just as doctors may have
trouble understanding a patient's explanation of symptoms, so
patients may have trouble understanding a doctor's explanation
of the diagnosis.
o Time—Patients want to spend more time with their doctor: they
want time to be able to explain things and have things explained
to them. We all know that there is a shortage of doctors, and we
know that a doctor's time is valuable. However, if one wish could
be granted for patients it would be for more time with their
doctor.
Improving the Patient’s Experience 2: Common Themes from the Literature
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o Appointments—Patients want to get to see their doctor within a
reasonable time; not weeks, but rather a few days, or, in the
case of a person who is unwell, a few hours if possible.
These are just five wishes that we are told on a daily basis by patients. The
relationship between a doctor and a patient is special, and one that works well
in most cases. It is also a partnership, a partnership that should be valued by
doctor and patient.
Improving the Patient’s Experience 2: Common Themes from the Literature
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HOSPITAL CARE
Background
Based on discussion with and involvement of their Patient and Public
Involvement Forum, along with other users, carers and health service
partners, The Royal United Hospital Bath outlines the overall ambitions and
strategic objectives of the Trust for the period 2004 – 2010 in relation to the
expectations of its patients.
Originator
The Royal United Hospital Bath
Source
Available at
http://www.ruh.nhs.uk/foi/strategy_patients_want.asp?menu_id=10
Extract
What our patients want from RUH
In developing the Strategic Direction and Service Direction for the Trust, the
Trust Patient and Public Involvement Forum (PPIF), other patient and user
representatives and voluntary organisations, have stated the following in
relation to the Trust's services:
1. Clinical quality of services is paramount - RUH must maintain its
strengths and build upon them to improve care
2. Patients need to be able to access care. This requires good transport
links and car parking and good access to departments and services
within sites
3. Where hospital care is needed, RUH should provide the majority of this
care for the majority of patients in its catchment area - emergency and
planned
4. Care should be provided as close to home as is possible - patients
should only go to hospital if there is a good reason to do so
5. There should be no significant movement of hospital services away
from Bath without very clear and well understood patient care benefits
6. RUH should work with other hospitals to make sure all patients get the
best care - particularly in areas of high specialisation
7. Patients should experience 'seamless' care. This requires better
integration of services - care may be given by many individuals /
organisations at different stages but should be managed together to
minimise disruption to patients
8. Patients should be cared for as individuals with care determined with
patients and their carers in the light of their personal circumstances
9. Good quality information is required throughout the health care system
- allowing for better integration of services between providers
10. There is a need for simple and clear communication with patients and
carers, both written and verbal. Communication needs to be timely and
informative
11. Patients want timely access to services - no unnecessary delays
Improving the Patient’s Experience 2: Common Themes from the Literature
19
12. Attention needs to be given to delivering care in a clean environment
(especially given concerns re. MRSA)
13. Patients want high quality care from high quality staff - keeping staff
means making RUH attractive in terms of job satisfaction
14. The Public want to be involved in planning the future of healthcare,
through the work of the PPIF and through broader patient and public
involvement mechanisms
Improving the Patient’s Experience 2: Common Themes from the Literature
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INPATIENT CARE
Background
An Ipsos MORI survey conducted in 2007 on behalf of the Department of
Health indicated that cleanliness and staff attitudes are the most important
factors that make patients feel they are treated with dignity and respect in
hospitals.
The research involved approximately 2,000 face to face interviews with adults
aged 15+ across the UK. It was designed to explore public perceptions
towards privacy and dignity in hospital, with emphasis on the importance of
single-sex wards.
Originator
Ipsos Mori for Department of Health
Source
Public Perceptions of Privacy and Dignity in Hospitals: Research study
conducted for the Department of Health. March 2007. London: Department
of Health.
Available at
http://www.ipsos-mori.com/content/research-archive/cleanliness-and-staffattitudes-crucial-for-patien.ashx
Extract
When asked what was most important for patients to feel they were treated
with privacy and dignity in hospitals, one in six (17%) mentioned being in a
single sex ward or bay. The importance of having single sex wards or bays
ranks in 7th place, behind making sure the hospital is clean (57%), being kept
informed about what is going on (44%), being able to discuss personal details
without other patients hearing (34%), and thoughtful or courteous staff (22%)
and decent food (17%).
Q I'd now like you to think about staying in hospital. Which three, if any, of the
following would be most important for you, for you to feel you were being
treated with privacy and dignity?
Making sure the hospital is clean
Being kept informed about what is going on
Medical staff to explain procedures fully
Being able to discuss personal details without other patients hearing
Thoughtful / courteous staff
Decent food
Being in a single-sex ward or bay
Making the area around my bed more private
Having a Private toilet / washing facilities
Having single-sex washing / toilet facilities
Improving the Patient’s Experience 2: Common Themes from the Literature
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%
57
44
41
34
22
17
15
13
12
9
Personal control over my environment i.e. being able to close blinds, shut
doors etc
Improving hospital nightwear / gowns
None of these
Other
Don't know
8
4
*
*
2
Improving the Patient’s Experience 2: Common Themes from the Literature
22
ACCIDENT & EMERGENCY SERVICES
Background
The Care Quality Commission is the health and social care regulator for
England, aiming to look at the joined up picture of health and social care.
Their purpose is to ensure better care for everyone in hospital, in a care home
and at home. In 2008 they carried out their third survey of emergency
departments. Just under 50,000 people who had visited an emergency
department took part (a 40% response rate), and were asked about their
experiences.
Originator
The Care Quality Commission
Source
Available at
http://www.cqc.org.uk/usingcareservices/healthcare/patientsurveys/hospitalca
re/emergencydepartmentsurvey2008.cfm
Extract
Key findings:
The survey shows improvements in communication since it was last carried
out in 2003 and 2004. More patients said that they had enough time to
discuss their problem and that they were definitely listened to by doctors and
nurses.
But the survey results also highlight some key areas of concern where there
remains scope for improvement:
o The survey shows that 59% of people said staff definitely did
everything they could to help control pain and a further 27% said they
did to some extent, however, 14% said they did not.
o In addition, many patients could do with more information upon
discharge. About a third (37%) said they were given a complete
explanation of possible side effects of their medication, up from 35% in
2003 and 36% in 2004. Only 37% said they definitely received
information about when they can resume activities such as driving or
going back to work, up from 35% in 2004
o Around half of patients went to A&E by car, yet one in four people
found it difficult to find a convenient place to park on arrival.
o While 98% of patients waited less than four hours to be examined by a
doctor or nurse, 27% said their overall visit to the emergency
department lasted longer than four hours.
Improving the Patient’s Experience 2: Common Themes from the Literature
23
NURSING
Background
The National Nursing Research Unit at King’s College London in their April
2008 edition of Policy+, drew together examples from nursing research in an
attempt to show that what matters to patients is variable, differing according to
individual people’s situations and circumstances.
Originator
The National Nursing Research Unit, King’s College London
Source
Policy+ policy plus evidence, issues and opinions in healthcare. April 2008.
National Nursing Research Unit, King’s College London.
Available at
http://www.kcl.ac.uk/content/1/c6/02/56/58/PolicyIssue9.pdf
Extract
Personal characteristics and views influence what matters to patients
o Young people accessing nurses in general practice want better
written information, confidentiality explained, and the option of
electronic messaging, whilst older people place emphasis on
meaningful interactions with nurses that support them to selfcare and to be a co-participant in care.
o The physical or mental impairments experienced by patients can
affect what matters to them. For example, people who have
hearing problems emphasise more time during appointments,
better written information, and better use of telecommunication
devices and video-conferencing.
o People’s attitudes towards health services and how they might
look after themselves is important, for example those who see
illness as a fact or as a failure may respond differently to selfmanagement or medication regimes.
Treatment or care received influences what matters to patients
o Patients emphasise different issues when nurse take on tasks
traditionally viewed as part of the role of doctors or other
healthcare professionals, such as prescribing or administering
drugs.
o The level of perceived risk of the treatment being given
influences what matters to patients. For example patients being
prescribed medication by nurses consistently say that they want
safe and successful treatment from competent nurses.
o The level of pain involved in a treatment influences the amount
of preparatory information and verbal explanation that patients
want.
Health conditions and health status influence what matters to patients
Improving the Patient’s Experience 2: Common Themes from the Literature
24
o The severity and degree of emotional trauma associated with a
condition influences what patients want. For example, patients
accessing emergency services say they want nurses to support
them more with social and emotional aspects of distress.
o For patients whose conditions mean they are frequent users of
nursing services the emphasis is on effective treatment and
informal, friendly care.
o The stage in a person’s illness trajectory is influential. For
example, at the time of diagnosis patients with epilepsy
emphasise having time with a specialist nurse to discuss
symptoms, tests and medication; whilst women living with a long
term diagnosis of epilepsy want better continuity of care and
better provision of information about side-effects of drugs.
o Possibility of recurrence or relapse is also a significant factor.
For example women who have a high risk pregnancy and
women with breast cancer prioritise continuity in their care,
personalised information and emotional support.
o Patients who self-care want participation in care to build their
confidence, comprehension and a sense of control and
strategies for care to be integrated into their daily lives e.g.
patients suffering chronic heart failure.
Service setting influences what matters to patients
o Patients accessing primary care and acute nursing services
emphasis different things. In community settings patients want
better access to nurses, in terms of making appointments; whilst
patients in hospitals want better and more organised
communication and staff to listen to their care stories and make
use of them to bring about improvements in practice.
o Failure to receive a planned treatment is unsettling. Patients
say they want staff to recognise this and to explain to them why
cancellations have happened, for example because of staff
shortages.
o Patients can be uncertain about the purpose of a particular
service. Patients who have been discharged to nurse-led
intermediate care services want clarity about the purpose of the
service and more consistency in the quality of care provided.
o People living in nursing homes want nursing staff to understand
their personal history to maintain their sense of self.
Key Issues
o What matters to patients is influenced by personal
characteristics and views of patients, the type of health
condition, the type of treatment of care that is being provided
and the service setting. These differences offer alternative
starting points for assessing and developing responsive care
services, for example through research and service assessment.
o Delivering what patients want requires care staff to keep in mind
the question – what matters to you today? It also requires
training, support and time. Managers can help by supporting
Improving the Patient’s Experience 2: Common Themes from the Literature
25
their staff to meet patients/clients needs fully at each visit and to
facilitate their discretion in what needs to be done.
o A one size fits all solutions will not create a personalised service
and staff development and initial training will need to educate
the current and future NHS workforce in this respect. There is
also opportunity for policy-makers to ensure that delivering care
that meets what patients want is valued and recognised in future
NHS governance and incentive systems.’
Improving the Patient’s Experience 2: Common Themes from the Literature
26
PATIENTS FROM BLACK AND MINORITY ETHNIC COMMUNITIES
Background
The 2007 GP Patient Survey highlighted lower patient satisfaction rates for
people from some BME groups. In response to this, the Secretary of State in
July 2007 announced that Professor David Colin-Thomé, National Clinical
Director for Primary Care, and Professor Mayur Lakhani, former Chair of the
RCGP would lead two reviews into access and responsiveness of primary
care services. As a result Professor Lakhan, in the report No patient left
behind: how can we ensure world class primary care for black and minroty
ethnic peopl, looks specifically at the reasons for lower satisfaction among
patients from some BME communities.
Originator
Department of Health
Source
Lakhani, M., 2008. No Patient Left Behind: how can we ensure world class
primary care for balck and minority ethnic people. London: Department of
Health
Available at
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPo
licyAndGuidance/DH_084971
Extract
o Supporting patient ‘choice and voice’ within BME communities
o Stronger, equitable commissioning for diverse populations
based on local needs assessment
o Better regulation
o Routine ethnicity data collection and compliance by NHS trusts
with race relations legislation
o Stronger leadership and commitment on BME issues
o Improving the quality of general practice
o Supporting PCTs and practices by establishing a national
project to spread best practice and innovation in BME primary
care
o Training of primary healthcare staff and developing the practice
receptionist role to become a ‘patient navigator’ – a highly skilled
person focussed on customer skills
o Supporting and nurturing a diverse workforce.
Improving the Patient’s Experience 2: Common Themes from the Literature
27
CANCER SERVICES
Background
The Picker Institute works with patients, professionals and policy makers
promoting understanding of the patient’s perspective at all levels of healthcare
policy and practice.
Originator
Picker Institute
Source
Improving Patients’ Experience, Picker Institute. May 2008.
Available at
http://www.pickereurope.org/Filestore/Downloads/14_Patient_engagement_FI
NAL.pdf
Extract
Breakthrough patient audits have produced a wide range of improvement
suggestions. Many apply to patients with other conditions or in different
settings. They include:
o Providing a separate exit or private room nearby to the consultation
room to enable distressed patients to leave with dignity
o Updating patients on the estimated length of delay for clinic
appointments, the cause of the delay and whether it is possible to
reschedule their appointment or wait outside the unit
o Pairing patients with a ‘buddy’ – a patient who has undergone similar
treatment and is happy to describe their experiences
o Supplying a list of websites that are safe and reliable sources of
information
o Including enough chairs in waiting rooms to accommodate a friend or
family member accompanying patients
o Providing clear information about who to contact outside working hours
– such as the GP or district nurse – particularly during holiday periods
o Not calling patients into the consulting room until the healthcare
professional is ready
o Keeping GPs fully up to date on patients’ treatment and progress
Improving the Patient’s Experience 2: Common Themes from the Literature
28
CHILDREN’S SERVICES
Background
Leicester City Children’s Community Health Service treat children and young
people aged from birth up to 19 years of age, who are still in education. They
deliver care and services to the GP population of Leicester, Leicestershire
and Rutland. There are a variety of ways that service users are informed
about activities, foremost amongst these is the Clinical Audit Update
newsletter. In this, they include summaries of completed audits,
benchmarking activity, the outcomes of service evaluations and advertisement
or flyers.
Originator
Leicester City Community Health Service, Children’s Community Health
Service
Source
Available at
http://www.leicschildhealth.nhs.uk/attachments/ct2578CCHSPatientsWantPos
tersA3.pdf
Extract
o Get the basics right, a clean environment with competent clinical
staff
o Treat me as a person, not as a symptom
o I want to be worked with as a partner in my health
o Fit in with my life, don’t force me to fit in with yours
Improving the Patient’s Experience 2: Common Themes from the Literature
29
Background
In a report by the Department of Health in 2007, the National Clinical Director
for Children, Young People and Maternity Services outlines how services are
being reconfigured to meet the needs of patients, and focussing on fully
engaging children, young people and their parents in making informed
choices about their care and in planning of services.
Originator
Department of Health
Source
Making it Better for Children and Young People. 2007. London: Department of
Health.
Available at
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPo
licyAndGuidance/DH_065036
Extract
The overall aim is to provide high quality services for children and young
people without compromising, timely, skilled assessment, diagnosis and
treatment by staff who have all the right competencies. . . . . recognise that
children are different, that they need to be looked after by people who
understand their particular needs and they should have services designed
specifically for them and their families and to be treated in a suitable
environment . . . . . . innovative ways to provide services using assessment
units, multi-disciplinary teams, outreach and IT should be considered with the
aim of providing clinically and cost-effective services that emphasise safety,
quality and sustainability. . . . better transition to adult services for those who
need it . . . . . children who need to attend hospital must be treated in facilities
designed for them, with attention to the needs of adolescents as well. These
requirements apply to children with emotional and mental health problems as
much as those with physical diseases.
Improving the Patient’s Experience 2: Common Themes from the Literature
30
OLDER PATIENTS
Background
In an article published by Cambridge University Press in 2003, Antony Bayer
discusses the needs of older patients in relation to their healthcare.
Originator
Antony Bayer, University Department of Geriatric Medicine, Cardiff & Vale
Trust
Source
Antony Bayer (2003). Telling older patients and their families what they want
to know. Reviews in Clinical Gerontology, 13 , pp 269-272
doi:10.1017/S0959259804001145
Available at
http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=24
1809#c1
Extract
Good communication between health and social care professionals and
patients, their families and carers is recognized increasingly as integral to best
management. Thus a central principle of the NHS Plan is that all patients
should have open access to information about services, treatments and
performance and should be treated as partners in their own care. Lack of
information and poor communication is a common basis for complaints, and
there is little evidence that older patients want any less information than those
who are younger Certainly, if elderly people living with long-term illness, frailty
or disability are fully informed, they will be better able to make appropriate
decisions and actively participate in managing their own condition and their
lives. In general, it is for professionals to provide the required information and
support, or to direct people to other quality sources of evidence-based
information, and not for them to decide whether or what should be disclosed.
Improving the Patient’s Experience 2: Common Themes from the Literature
31
MENTAL HEALTH SERVICES
Background
The Care Quality Commission is the health and social care regulator for
England, aiming to look at the joined up picture of health and social care.
Their purpose is to ensure better care for everyone in hospital, in a care home
and at home. Their 2008 survey of community mental health services, the
fifth survey of its kind included 68 NHS trusts that provide secondary mental
health services; including combined mental health and social care trusts, and
primary care trusts that provide mental health services. More than 14,000
service users took part in the survey (a response rate of 35%).
Originator
The Care Quality Commission
Source
Available at
http://www.cqc.org.uk/usingcareservices/healthcare/patientsurveys/mentalhea
lthservices.cfm
Extract
Key findings
o The percentage of service users who were told who their care
coordinator is continued to increase - up from 71% in 2007 to 74% in
2008.
o A greater proportion of service users reported that they had received a
written copy of their care plan - up to 59% in 2008 from 55% in 2007.
o A 2% increase in the percentage of service users who had a care
review in the last 12 months - from 53% in 2007.
o The figures for psychiatrists "definitely" listening carefully had
improved: up from 71% in 2007 to 72%.
o There were similar improvements for service users having trust and
confidence in the psychiatrist - up 1% to 63%.
o The proportion who said that they "definitely" had a say in decisions
about medication has also improved in recent years, from 40% in 2004
to 43% in 2007 and 44% in 2008.
o A 3% increase in service users who had a number for someone from
NHS mental health services that they could contact out of office hours
(52% in 2007).
Areas for improvement
o A total of 24% of service users had not been involved in deciding what
was in their care plan.
o Eleven percent of service users did not find their care review helpful
and 5% reported that they had not been given a chance to express
their views at their care review.
o In 2008 16% of service users said their diagnosis had not been
discussed with them.
o A large proportion of service users (43%) reported that at least one of
their appointments with a psychiatrist in the past 12 months had been
cancelled or changed to a later date.
Improving the Patient’s Experience 2: Common Themes from the Literature
32
o
o
Of service users who did not receive counselling, almost a third (32%)
said they would have liked to have counselling sessions.
Just below one-third (32%) of service users who had been given new
prescriptions said that they had not been told about the possible side
effects, although this proportion has been falling (35% in 2004 and
2005, 34% in 2006 and 33% in 2007).
Improving the Patient’s Experience 2: Common Themes from the Literature
33
Background
This article reviews literature concerning patients’ expectations of psychiatric
care. Early research, pre-1980, is outlined, and followed by a systematic
review of 21 studies fulfilling specific inclusion criteria from 1980 onwards.
Originator
University College London
Source
Noble, L.M., Douglas, B.C., Newman, S.P. (2001), "What do patients expect
of psychiatric services? A systematic and critical review of empirical studies",
Social Science & Medicine, Vol. 52 No.7, pp.985-98.
Abstract available at
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6VBF42813MH1&_user=477543&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C0
00022838&_version=1&_urlVersion=0&_userid=477543&md5=66901ff8641c4
309f0f1b086c76c072d
Extract
psychological approaches . . .
most common requests are for 'clarification', 'psychological expertise' and
'psychodynamic insight’
Improving the Patient’s Experience 2: Common Themes from the Literature
34
Background
In an article published in 1998 by the International Journal of Health Care
Quality Assurance, Paul Blenkiron examines the knowledge and expectations
of patients newly referred to one hospital psychiatric clinic.
Originator
International Journal of Health Care Quality Assurance
Source
Paul Blenkiron, Referral to a Psychiatric Clinic: What do patients expect?
International Journal of Health Care Quality Assurance. 11 (6) 1998.
Available at
http://www.emeraldinsight.com/Insight/ViewContentServlet;jsessionid=0CA4B
69C51F994155C7E46816EF7E600?Filename=Published/EmeraldFullTextArti
cle/Pdf/0620110602.pdf
Extract
It has long been recognised that there are particular sensitivities in relation to
mental health patients and that it is important to:
Acknowledge the importance of confidentiality and social implications
attached to seeing help of this nature
Improving the Patient’s Experience 2: Common Themes from the Literature
35
Background
In a study reported in the June 2006 issue of the British Journal of General
Practice (BJGP) where study authors talked to patients and health
professionals across the West Midlands. The research involved 18 focus
groups across 6 Primary Care Trusts and comprised of 45 patients with
serious mental illness, 39 GPs and 8 Practice Nurses. Its aim was to describe
the views of patients and the potential for patient involvement in primary care
from the perspective of patients, GPs and Practice Nurses. The study
concluded that meaningful change in patient involvement required primary
care practitioners to value the views and experiences of people with serious
mental illness.
Originator
British Journal of General Practice
Source
Lester, H., Tait, L., England, E., Tritter, J., Patient involvement in primary care
mental health; a focus group study. BJGP June 2006; 56: 415-422
Available at
http://www.rcgp.org.uk/pdf.aspx?page=4305
Extract
Patients with mental health problems felt that the care they receive from their
GP could be improved if they are given initial advice from other patients who
have ‘been through the system’.
Few examples were given by either health professionals or patients of a
‘partnership’ approach to the doctor/patient relationship, where patients and
GPs shared decision making and appeared to view each other as equals.
Indeed most patients described decisions about medication and referral being
made only by the health professional. Most patients felt unable to challenge
their GP because of lack of information about alternatives and occasionally
fear being misinterpreted as difficult. Patient involvement is therefore even
more critical for this group.
Improving the Patient’s Experience 2: Common Themes from the Literature
36
PATIENTS WITH HEARING LOSS
Background
In April 2008, through the Transforming Audiology Services programme, a
national audiology event was held in London for those involved in the delivery
of audiology services - clinicians, managers, patient representatives and
commissioners. Phillipa Palmer, Director of Health Programmes, RNID in her
presentation, Transforming Audiology Services – What patients want – an
adult hearing aid user’s perspective, emphasised the needs of adult patients
with hearing loss.
Originator
Phillipa Palmer, RNID.
Source
Phillipa Palmer. Transforming Audiology Services – What patients want – an
adult hearing aid users perspective. April 2008. London.
Available at
http://www.18weeks.nhs.uk/Content.aspx?path=/achieve-andsustain/Diagnostics/Audiology/national-event-presentations/
Extract
o Treating people with dignity in a deaf aware way
- Clear patient announcement systems
- Deaf and disability awareness training for all new staff
- Refresher training for staff
- Customer service knowledge for frontline staff
- Disability champions
o Moving routine hearing aid provision out of the acute hospital
o Ensuring patients are at the centre of care
- Utilise technology while providing a personal care
- 18 week target a lever for improving access and to drive change
- Hearing aid fitting almost the start of the journey for some
- Use third sector and volunteers working in partnership to provide
ongoing support
Providing ongoing support delivered in more creative ways
Improving the Patient’s Experience 2: Common Themes from the Literature
37
Background
In April 2008, through the Transforming Audiology Services programme, a
national audiology event was held in London for those involved in the delivery
of audiology services - clinicians, managers, patient representatives and
commissioners. Susan Daniels, Chief Executive of NDCS, in her presentation,
The patient’s perspective – deaf children and their families, emphasised the
needs of children with hearing loss and their families.
Originator
Susan Daniels, NDCS.
Source
Susan Daniels. The patient’s perspective – deaf children and their families.
April 2008. London.
Available at
http://www.18weeks.nhs.uk/Content.aspx?path=/achieve-andsustain/Diagnostics/Audiology/national-event-presentations/
Extract
Empowering disabled children and their families
- Improved provision of information
- Greater transparency in decision making
- Supporting disabled children to shape services
Family Friendly Services
- Families want professionals to respect their knowledge of their
child
- Families want up to date, accurate and impartial information
- Good communication between services and individual
professionals
- Consistency of care i.e. key workers
- Services to be truly responsive to families’ needs
- Family friendly environment
- A culture of evaluation learning
- CHSWG to involve all stakeholders and be a strategic force for
change
The NHSP Children’s Consultation 2007
Children dislikes
- Long waiting times
- Lack of suitable games/toys/books
- Waiting alongside adults
- Long waiting times for ear moulds
- Ear mould impressions
Children like
- Being asked their opinions
- Being given choice e.g. colour of ear mould
- Child friendly waiting areas
- Staff who can communicate with them – BSL users
- Meeting other deaf children and gentle audiologists!
Improving the Patient’s Experience 2: Common Themes from the Literature
38
SIGHT IMPAIRED PATIENTS
Background
In April 2007, RNIB launched a series of leaflets called 'Information is Power'.
The leaflets highlight a number of key areas where different groups in society
can empower blind and partially sighted people. Each leaflet identifies five
priorities for action.
Originator
RNIB
Source
RNIB. 2007. Information is power: How the health services can empower
blind and partially sighted people.
Available at
http://www.rnib.org.uk/xpedio/groups/public/documents/publicwebsite/public_i
nfohealthp.pdf
Extract
o Record the format service users require for information, such as
appointments, treatment and test results, and ensure that future
information distribution is provided in this format.
o Ensure there is a full understanding of the information needs of blind
and partially sighted patients outlined within the Disability Equality
Duty.
o Staff should be trained in disability awareness issues and able to offer
assistance when it is required.
o Do not rely solely on visual appointment systems, such as LCD
scrolling information boards displaying appointments, which cannot be
used by people with sight loss.
o Ensure medication and prescription information is accessible to blind
and partially sighted people by using new systems, such as x-pil, which
implements a European Union directive, and Community Pharmacist
programmes.
Improving the Patient’s Experience 2: Common Themes from the Literature
39
MATERNITY SERVICES
Background
The Care Quality Commission is the health and social care regulator for
England, aiming to look at the joined up picture of health and social care.
Their purpose is to ensure better care for everyone in hospital, in a care home
and at home. During 2007 NHS trusts providing maternity services sent
questionnaires to 45,000 women who had recently given birth, asking them
about their experiences of maternity care. More than 26,000 women took part
(a response rate of 59%).
Originator
The Care Quality Commission
Source
Available at
http://www.cqc.org.uk/usingcareservices/healthcare/patientsurveys/maternitys
ervices.cfm
Extract
Key findings
The majority of women saw a health professional when they wanted and had
choice about where to have their baby.
Most respondents (94%) who wanted a screening test to check whether their
baby was at increased risk of developing Down's syndrome said they had the
test.
A large percentage (89%) rated the overall care received during labour and
birth as "excellent", "very good" or "good" and 82% said they were always
spoken to in a way they could understand during this time.
Areas of concern
More than a third (36%) of respondents said they were not offered any
antenatal classes provided by the NHS, though the majority of these
respondents (76%) were women who had previously given birth.
During labour a quarter of respondents reported that they had been left alone
at a time when it worried them.
More than a third (37%) felt they had not always been treated with kindness
and understanding
Improving the Patient’s Experience 2: Common Themes from the Literature
40
DIABETES SERVICES
Background
The Care Quality Commission is the health and social care regulator for
England, aiming to look at the joined up picture of health and social care.
Their purpose is to ensure better care for everyone in hospital, in a care home
and at home. In 2006 via PCTs they conducted a survey of almost 125,000
adults (aged 16+) with diabetes, asking about their experiences of services
provided by the NHS. Responses were received from 68,500 people (a
response rate of 55%).
Originator
The Care Quality Commission
Source
Available at
http://www.cqc.org.uk/usingcareservices/healthcare/patientsurveys/servicesfo
rpeoplewithdiabetes.cfm
Extract
Key findings
o Nearly three-quarters (73%) of respondents said that they were given
the right amount of information at the time of diagnosis, although only
57% reported receiving the right amount of written information.
o Less than 1% reported that they had never had an annual check-up to
assess their condition.
o The majority of respondents reported that they had undergone tests
within the last 12 months to check for complications with their diabetes.
o Of those admitted to hospital as an inpatient in the last 12 months, 68%
reported that all staff were aware that they had diabetes.
o Seventeen per cent of respondents didn't know what type of diabetes
they had.
Improving the Patient’s Experience 2: Common Themes from the Literature
41