Download Current Services Review

Current services review
Author: Caroline Walters, Cancer Information Strategy Lead
Date: May 2013
Version: 0c
Publication/ Distribution:

Cancer Information Strategy Project management group
Review Date: August 2013
Purpose and Summary of Document:
This review aims to provide the project team with a detailed
understanding of the current provision of personalised information for
people affected by cancer in Wales.
Work Plan reference: National Cancer Patient information Strategy,
Wales
Version
Number
0a
0b
0c
Status
First draft work in
progress
Second draft work in
progress
Third draft work in
progress
Explanation
Author’s first draft.
Comments received and
incorporated
Comments received and
incorporated
1
CONTENTS
CURRENT SERVICES REVIEW ........................................................ 1
1
CONTENTS .............................................................................. 2
2
INTRODUCTION ...................................................................... 4
3
SCOPE AND APPROACH TAKEN................................................ 4
4
FINDINGS ............................................................................... 6
4.1 What is the policy context in Wales in relation to tailored information
provision? ............................................................................ 6
4.2 Who produces cancer patient information and in what format? ... 8
4.2.1
Local health boards
9
4.2.2
Cancer networks
9
4.2.3
EIDO
10
4.2.4
NHS Direct Wales
10
4.2.5
Third sector organisations
11
4.3 To what extent is there evidence of duplication and gaps in information
content generation? ............................................................ 12
4.4 How is information content quality assured? ........................... 16
4.4.1
Local health boards
17
4.4.2
NHS Direct
17
4.4.3
EIDO Healthcare
18
4.4.4
Third Sector Organisations
4.5 Who provides cancer information? .........................................
4.6 Healthcare professionals role in information provision ..............
4.7 What information services are available? ...............................
18
19
20
22
4.7.1
Telephone information services
22
4.7.2
Web-based information services
23
4.7.3
Face to face information
25
4.8 What quality assurance processes are in place for information services
in Wales? ........................................................................... 30
4.8.1
Telephone information services
30
4.8.2
Web-based services
31
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4.8.3
Face to face services
32
4.9 How are information services funded? ................................... 32
4.10 Who is accessing these services and for what purpose? ........... 33
4.10.1
Telephone based information services
33
4.10.2
Web-based information services
35
4.10.3
Face-to-face information services
36
5
CONCLUSIONS AND RECOMMENDATIONS ............................. 43
5.1 Conclusions ........................................................................ 43
5.2 Recommendations ............................................................... 44
6
BIBLIOGRAPHY ..................................................................... 46
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2
Introduction
In 2010, the Health Minister supported a proposal by Macmillan to explore how
personalised cancer information could be developed in Wales through a
national strategic information project hosted and delivered as a partnership
arrangement between Public Health Wales and Macmillan Cancer Support. The
project plan identified the need to undertake an service review to inform the
direction of the project. There are three key stages to this review namely a
needs assessment, a literature review on the patient information needs of
people with cancer and the effectiveness of interventions to meet these needs
and a review of current information services in Wales. This report outlines the
third stage of the review – the current services review.
3
Scope and approach taken
The aim of the current services review is to gain a detailed understanding of
the current provision of tailored information for people affected by cancer in
Wales to inform the future direction of the National Cancer Patient Information
Strategy project.
By tailored information, we mean information that is timely, relevant and
meets the individual needs of the person with cancer in terms of format,
content and level of support provided.
The review does consider the following aspects of cancer related information:

The provision of tailored information and support to people affected by
cancer following diagnosis

Systems to enable consistent and thorough assessment of information
and support needs for people affected by cancer, and the implementation
of mechanisms to ensure those needs are met

Quality assurance systems to maintain the quality, validity and
continuing relevance of information intended for people affected by
cancer.
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The review does not consider the following aspects of cancer related
information:

Information on cancer service performance, statistics and demographics

General public awareness information, e.g. pre-diagnosis information on
signs and symptoms
The current services review will consider three key areas namely;
1. The production of cancer patient information content
2. The collection of cancer information content – how content is organised
and framed
3. The dissemination of cancer information content – both as part of the
care pathway and via delivery mechanisms such as web, phone and faceto-face
The report has been structured around a series of key questions as outlined
below;
1. What is the policy context in relation to tailored cancer patient
information provision?
2. Who produces cancer information content and in what format?
3. To what extent is there evidence of duplication and gaps in information
generation?
4. How is information content quality assured?
5. Who disseminates cancer information?
6. What is health professionals’ role within information provision?
7. What information services are available?
8. What quality assurance processes are in place for information services in
Wales?
9. How are information services funded?
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10. Who is accessing information services and for what purpose?
By answering these key questions, it will be possible to draw conclusions
around the extent to which the policy context supports the provision of tailored
information and the role of healthcare professionals within this provision.
Additionally, this approach will enable a discussion of the current information
services landscape in Wales in terms of content, delivery model, quality,
geographical distribution of services and the extent to which these services
meets the needs of people affected by cancer in Wales.
The final section of this review will bring together the key findings discussed
throughout the report and present a number of recommendations to inform the
next stage of the project.
4
Findings
4.1
What is the policy context in Wales in relation to tailored
information provision?
Numerous recent Welsh health policy statements contain reference to the
provision of information and support in relation to self-care and improving
patient experience.
These include the Primary and Community Services
Strategic Delivery Programme in which the need for citizens to develop
confidence in their ability to manage their own health through improved
information, knowledge and self care is central to the plan’s vision (Welsh
Government, 2010). Achieving Excellence- the Quality Delivery Plan for the
NHS in Wales 2012-2016 also stresses the importance of clear and consistent
information in enabling patients to be able to take responsibility for their own
health and manage their conditions (Welsh Government, 2013).
Clear
references to tailored information can also be seen within disease specific plans
such as the Stroke Delivery Plan (2012) and the Diabetes Plan (2013).
Concurrently, in recent years, there has been an increasing emphasis on
patient information in cancer policy documents, both in terms of content and
delivery, within the context of improving patient experience. The National
Cancer Standards 2005 offered guidance on the written information that
should be provided to each cancer patient and recommended that a nominated
person in each multi-disciplinary team (MDT) should be responsible for
ensuring written information is offered to all patients (Welsh Government,
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2005). The 2009 NICE Supportive and Palliative Care Guidance also made a
number of recommendations in this area, stating that information- giving is as
a key element of supportive care; an area which should be given equal priority
alongside diagnosis and treatment and fully integrated within the cancer
pathway. The guidance recommended that health information professionals
should be trained to communicate effectively with patients and support people
to understand and navigate the information that they receive and that local
policies should be developed to detail what information materials should
routinely be offered at various stages in the patient pathway. (National
institute of Clinical Excellence, 2009) The recent Welsh Government Cancer
Delivery Plan also states that people should have access to timely information
and links the responsibility for information giving role with the key worker role
and the assessment and care planning process (Welsh Government, 2012).
In addition to fit with the self care agenda, following events at Mid
Staffordshire and the publication of the subsequent influential Francis report,
there has been an increased emphasis on the importance of listening to
patients both at an individual and collective level and effectively measuring
patient experience to ensure quality and safety. Key to listening effectively is
understanding what matters most to patients when considering their
experience of care and focussing listening on these areas (1000 Lives, 2013).
Research on this area has revealed a number of common themes which are
central to a good patient experience and are consistent across care settings.
Good information is a generic theme across conditions and settings (Robert,
2011) and its importance is recognised in the recent Welsh patient experience
framework developed by the National Service User Experience Group (Welsh
Government, 2013), as demonstrated below;
Patient
Experience
Domain 1
First
and
lasting
impressions




Ease
of
and
timeliness
of
access
to
a
service
Letters
and
information
Welcome
and
reception
Being
treated
with dignity and
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Patient
Experience
Domain 2
Receiving care in a
safe,
supportive,
healing environment



Receiving care in
a clean, clutterfree environment
Receiving good,
nutritious,
appropriate food
and access to
drinks
Having rigorous
infection control
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Patient
Experience
Domain 3
Understanding of and
involvement in care


Receiving
appropriate,
timely
information and
being
communicated
with
in
an
appropriate
timely manner
Being involved in
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
respect
Co-ordination
care
of
practices in place
decisions
about
choice
of
treatment options
and care plans,
including
discharge
Despite clear rhetoric in support of good quality health information in key
documents, there have been few initiatives to support implementation of these
commitments or to provide guidance to the NHS in Wales and those involved in
the delivery of information on the most effective approaches in this area. In
2012, the Welsh Government published the Together for Health Public
Information Delivery Plan with the aim of supporting people to find more,
reliable, up-to-date information and understand it quickly, by seeing it
presented in a more user-friendly way. Whilst the plan talks of the need to
create a new single online portal to make it easier for the public to access
health information, there is no detail on content production, quality assurance
processes and support arrangements to ensure equitable access to online
information (Welsh Government, 2012). This lack of detail in the policy
context is further exacerbated by the lack of a Welsh Government policy lead
for this area of work.
This complex policy context raises important questions as to the extent to
which we can be confident that current information provision is timely, of a
high quality and tailored to meet individual need as required in policy in the
absence of underpinning supporting initiatives. Given the consistent finding
that good information provision is central to good patient experience and is
often a factor in ombudsman reports when there are quality of care issues,
there is a prerogative on the Welsh NHS to ensure provision is fit for purpose
and meets the needs of all.
4.2
Who produces cancer patient information and in what format?
There are a range of producers of cancer patient information in Wales. These
include individual teams within health boards, cancer networks, EIDO
Healthcare, NHS Direct and a variety of third sector organisations such as
Cancer Research UK, Breast Cancer Care and Macmillan Cancer Support.
Information production varies in terms of format, language, standards, quality
and review processes by source.
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An understanding of content production in Wales is key given the potential of
common content to be utilised by all delivery agents, as the diagram below
explains.
Face to face supported
information giving
Booklets/leaflets
Online supported
information-giving
Website
Selfdirected
4.2.1
Supported information
– giving over the phone
Information content
Directed
support
Local health boards
Each health board in Wales has local arrangements in place in terms of health
information production. Predominantly information produced pertains to local
arrangements and contact details, diagnosis, treatment and side effects and
continues to be developed in leaflet form by health care professionals and
translated into Welsh. In the majority of health boards, professionals are
supported to develop information by internal guidance documents and to some
extent by patient information leads and quality assurance processes. There is
little evidence of information being produced in formats other than leaflets and
only a minority of organisations currently upload content relating to cancer
patient information online (Walters C., 2013).
4.2.2
Cancer networks
The North Wales Cancer Network employ two patient information officers to
work with health-care professionals to locally produce cancer information for all
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patients, and their carers. The cancer network produce a range of content
including generic online content relating to background on cancer and the
North Wales cancer centres and a range of leaflets covering issues such as
tests, treatment options and broader areas such as diet and complementary
therapies. Leaflets can be downloaded from the website or ordered from the
patient information officers (North Wales Cancer Network, 2012) and are
available in English and Welsh.
The South Wales Cancer Network do not have equivalent posts and do not
produce cancer patient information in-house.
4.2.3
EIDO
EIDO Healthcare is a producer of patient information leaflets to support the
informed consent process. In 2007-8, the Welsh Risk Pool purchased a licence
for patient information leaflets from the organisation which entitles Local
Health Boards to download leaflets for free from the documents library (Welsh
Risk Pool Services Advisory Board, 2008). Content includes leaflets around
treatment choices and surgical options. The most commonly used documents
are translated into six languages (Eido Healthcare, 2013).
The Welsh Risk Pool budget also pays for translation of these documents into
Welsh. In 2007-2008, £105,000 was allocated to EIDO leaflets. This rose to
£130,000 in 2008-09 (Welsh Risk Pool Services Advisory Board, 2008), stood
at £110,000 in 2009-2010 and 2010-11 with £130,000 approved for 20102011 (Welsh Risk Pool Services Advisory Board, 2010-2011).
4.2.4
NHS Direct Wales
NHS Direct Wales is a health advice and information service available 24 hours
a day, seven days a week on the phone and on-line. As part of its functions,
the service provides written, downloadable health information on a wide range
of conditions, treatments and local health services. This includes information
on cancer types (signs and symptoms, diagnosis, treatment, recovery) which is
sourced from NHS Choices.
Information is also available in the Welsh
language for the most commonly utilised content (NHS Direct Wales, 2013).
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4.2.5
Third sector organisations
Macmillan Cancer Support
Macmillan Cancer Support is the largest third sector provider of cancer patient
information content, offering free information in a range of formats including
over the phone, online, in print booklets, leaflets, fact sheets and on DVD.
Content is also available on audio, in large print or Braille on request and
Macmillan produce versions of their most popular publications is other
languages including the Welsh language. Macmillan content covers a range of
topics from information on cancer types to causes and risks, treatments, tests
and screening, living with cancer and end of life care and is aimed at meeting
the needs of all people affected by cancer (Macmillan Cancer Support, 2012).
Cancer Research UK
Cancer Research UK is another key provider of cancer information offering
extensive English language online content on their specific patient information
website – Cancer Help UK. Cancer Help UK offers written information on
tumour types, causes and symptoms, types of treatment, clinical trials and
coping with cancer (Cancer Research UK, 2013).
Breast Cancer Care
Breast Cancer Care is a key player in terms of cancer information provision in
Wales as evidenced on the breast cancer template for the All Wales Patient
Information Project (Williams, 2011). The organisation offers free information
content in a variety of formats including on-line, over the phone, in print
booklets, leaflets, fact sheets, in e-book format and on DVD and CD. All titles
are available in large print, either to download from the relevant web page or
as an electronic file on request. Braille and audio CDs of any title are also
available on request (Breast Cancer Care, 2013). Breast Cancer Care also
offers a limited range of materials in different languages, including Welsh.
Breast Cancer Care content covers a range of topics from information on
breast health, diagnosis, treatments and side effects to secondary breast
cancer and health and wellbeing and is aimed at meeting the needs of all
people affected by breast cancer (Breast Cancer Care, 2013).
Other tumour specific information providers
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In addition to two UK-wide third sector providers of generic cancer patient
information (Macmillan Cancer Support and Cancer Research UK) and the
predominance of Breast Cancer Care in breast cancer information provision, a
range of smaller UK-wide organisations also produce cancer content on a site
specific basis. These include Bowel Cancer UK, Jo’s Cervical Cancer Trust, The
Lymphoma Association, the Lymphodoema Support Network, Ovacome,
Prostate Cancer UK and Pancreatic Cancer Action. Content primarily relates to
risk factors, symptoms, diagnosis, treatment options and living with and
beyond cancer. Content tends to be only produced in the English language.
4.3
To what extent is there evidence of duplication and gaps in
information content generation?
As described above, there are an array of producers of cancer information
content in Wales. This next section discusses what the review has uncovered
about the current usage of cancer information and the extent to which content
is duplicated and potential gaps in available materials exist. It draws heavily
on the 2011 All Wales Patient Information Pathway report which provides
detailed information on the information materials used by Multi-Disciplinary
Teams across Wales (with the exception of palliative care which was not
considered in detail as part of the project).
As part of the review for the All Wales Patient Information Pathway report,
information leads for each tumour type MDT within each health board across
Wales were issued with templates in order to gain a detailed list of information
titles provided to patients, at what stage the information was offered, the
producer of the information and availability in the Welsh language. Analysis of
these templates is discussed below.
Despite the clear relevance of the
templates, caution must be taken when reviewing the results of this mapping
exercise and using them as a gauge for the provision of written patient
information across tumour type and health board in Wales given varied
response rates to the exercise. The quality of the templates returned also
varied significantly with certain teams demonstrating comprehensive provision
of clinical and supportive information and other teams providing no supportive
information and little clinical information.
Given the number of templates produced (28), a sample of three tumour sites
have been studied in detail and described below.
Upper Gastro-Intestinal (GI) cancers
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The review revealed that there were 68 leaflets associated with upper GI
cancers in circulation within MDTs across Wales. 24 (35%) of these leaflets
were produced by national organisations such as Macmillan Cancer Support,
the Oesophageal Patients Association and EIDO whilst 44 (65%) of leaflets
were produced locally by clinical nurse specialists, local dietetics departments
and cancer networks. The nature of information utilised varies according to
the stage in the pathway as the table below shows.
Stage in the pathway Number of locally
produced leaflets
utilised
Number of
nationally produced
leaflets utilised
Diagnosis
16
8
Treatment
16
9
After treatment/living
with cancer
12
7
A number of tentative conclusions can be reached from the analysis outlined
above although it is to be noted that the response rate for this site was 44%
and so may not be fully representative of information provision for this tumour
type across Wales. It is clear that upper GI multi-disciplinary teams across
Wales are using a large variety of sources to convey similar information and
thus consistency of approach across tumour type is limited. Whilst national
sources of information from a range of cancer charities are used relatively
widely particularly in the after treatment phase, there continues to be
significant usage of locally produced materials particularly in the diagnosis and
treatment phases. For example, 4 different leaflets on gasterectomy have
been produced by local teams and three different leaflets on the endoscopy
procedure in addition to usage of information supplied by Macmillan Cancer
Support and EIDO on these areas and 3 different leaflets on eating after an
oesophageal stent. It was also notable that there were significant gaps on the
templates in the sections relating to non-clinical aspects of care in particular in
relation to working through cancer and finances.
Gynaecological cancers
The review revealed that there were 38 leaflets associated with gynaecological
cancers in circulation within MDTs across Wales. 19 (36%) of these leaflets
were produced by national organisations such as Macmillan Cancer Support
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and EIDO whilst 34 (64%) of leaflets were produced locally by clinical teams
within health boards, radiotherapy departments and cancer networks. Again
the nature of information utilised varies according to the stage in the pathway
as the table below shows.
Stage in the pathway Number of locally
produced leaflets
utilised
Number of
nationally produced
leaflets utilised
Diagnosis
6
Treatment
effects
2
and
side 29
7
After treatment/living 2
with cancer
7
A number of conclusions can be reached from the analysis outlined above
although it is to be noted that the response rate for gynaecological cancers
was 64% and so may not be fully representative of information provision for
this tumour type across Wales. It is clear that gynaecological multi-disciplinary
teams across Wales are using a variety of sources to provide similar
information to gynaecological cancer patients. Consistency of approach across
tumour type across Wales does differ however this is less apparent for
gynaecological cancers than for other cancer types.
From the evidence
obtained from the templates, there is significant usage of locally produced
information materials particularly in the treatment phase in terms of
information on treatment types and side effects such as fertility, sore mouth
and hair loss. For example, three locally produced leaflets are currently
produced to provide generic information on chemotherapy. It was notable
through analysing the template that Macmillan was the national information
provider of choice for this cohort of professionals with high usage of Macmillan
materials particularly at the diagnosis stage and when discussing the more
holistic aspects of care. It was also clear that there were significant gaps on
the templates in the sections relating to non-clinical aspects of care in
particular in relation to working through cancer and finances.
Breast cancers
The review revealed that there were 186 leaflets associated with breast
cancers in circulation within MDTs across Wales – a far higher number than for
any other cancer type analysed. 98 (53%) of these leaflets were produced by
national organisations such as Breast Cancer Care, Macmillan Cancer Support,
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EIDO and drug companies whilst 88 (47%) of leaflets were produced locally by
clinical teams, local radiography departments and cancer networks.
Stage in the pathway Number of locally Number of nationally
produced
leaflets produced
leaflets
utilised
utilised
Diagnosis
28
26
including 37
48
After treatment/living 23
with cancer
24
Treatment
side effects
Given the strong response for templates for this tumour site (89%), a number
of conclusions can be reached from the analysis undertaken. It is clear that
there is a significant degree of consistency in the information given to breast
cancer patients across Wales with common usage of Breast Cancer Care
information materials across the cancer phases. Whilst information continues
to be locally produced, this information on the whole appears more likely to
pertain to local services such as support groups and key contact details rather
than specific information on diagnosis and treatment types. Although, it
should be noted that generic information provided on chemotherapy and
radiotherapy is often locally produced and is an exception to this rule. It was
also notable that in comparison to the other templates, responses indicated
that information provision relating to the non-clinical aspects of care was more
comprehensive for this tumour type with an array of nationally produced
information by Macmillan Cancer Support and Breast Cancer Care in usage.
Professionals completing the breast cancer templates also noted other sources
of information available such as websites and DVD resources potentially
suggesting a broader understanding of information provision than implied by
the documentation supplied by other tumour type MDTs.
The evidence from the analysis of the templates suggests that, despite obvious
usage of information materials produced by third sector organisations such as
Breast Cancer Care and Macmillan Cancer Support, locally produced
information is extensively developed and used throughout the cancer pathway
with associated costs in terms of money and resource. The analysis reveals
significant duplication of effort and resource in relation to the development of
materials with limited sharing of resources between health boards and thus a
concurrent lack of consistency across Wales in information provision for people
with cancer. In addition to duplication, there appear to be significant gaps in
knowledge, in particular for certain tumour sites, of information materials
relating to the more holistic/ non-clinical aspects of care. The analysis also
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indicates issues in terms of the limited availability of Welsh language resources
across tumour types.
The All Wales Patient Information Pathway Project also highlighted inconsistent
usage of EIDO materials although this may be influenced by the proximity of
the timing of the audit to the introduction of the EIDO licence (Williams, 2011).
NHS Direct was not referred to as a key information source as part of the
review of information materials utilised by multi-disciplinary teams.
The findings of the analysis of the All Wales Patient Information Pathway
Project templates can be supported by a number of sources. Namely the
Health Inspectorate Wales review of Cancer Networks which states;
There is considerable patient information available to cancer patients,
however, the content and quality of this is variable and it is being
produced by individual Trusts and charities. There is limited consistency
in this information across the Regional Networks, apart from some
isolated examples (Healthcare Inspectorate Wales, 2006).
In addition, the interviews conducted with patient information leads which
suggested that usage of EIDO and other external source information materials
varied significantly across health boards with choice of information provider
strongly influenced by clinician rather than organisational preferences (Walters,
2013).
Furthermore NICE guidance suggests that information gaps also
extend to resources available to meet the individual needs of those with
learning disabilities, people with sensory deficits and people’s whose first
language is other than English (National institute of Clinical Excellence, 2009).
Recent commentary from the British Medical Journal again supports this
argument stating;
The NHS’s multifarious patient information leaflets are inaccurate, inconsistent, and
confusing, and effort is duplicated because each trust commissions its own, often
from the private sector (McCartney, 2013)
4.4
How is information content quality assured?
Quality assurance processes differ significantly for the various content
producers, particularly between local and external providers.
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4.4.1
Local health boards
The majority of Welsh health boards and trusts have prepared internal
guidance documents for healthcare professionals developing information which
cover areas such as plain English, font size and use of terminology. Guidance
in its current form tends only to cover written leaflets rather than other forms
of information materials such as DVDs, web pages and predominantly
information continues to be produced in this format. Work is ongoing following
the publication of the All Wales Standards for Accessible Communications and
Information for People with Sensory Loss in 2013 to ensure the availability of
information in other formats (Welsh Government, 2013).
In addition to guidelines, a number of organisations have clear processes in
place for developing locally produced information materials with leaflet
templates, a central database to record leaflet production, reader panels of lay
people who review all materials produced, approval mechanisms, alerts to
review materials and translation functions to ensure Welsh language versions.
Other organisations have a less structured approach with information being
produced on an ad hoc basis, no central database or quality assurance
mechanisms.
Quality of locally produced information materials was not reviewed as part of
the All Wales Patient Information Pathway project but insights gained from
recent interviews conducted with patient information leads in Wales suggest
that this is highly variable at a health board level with a lack of a national coordinated approach and standards and limited resource within health boards in
terms of specific patient information expertise and time to ensure quality
assurance processes are maintained (Walters, 2013). Given the absence of
national standards in this area, questions must be raised as to the degree to
which information produced locally is consistently ‘evidence-based, balanced,
regularly updated, culturally sensitive, available in a variety of formats and
composed in plain language’ as required by NICE guidance (National institute
of Clinical Excellence, 2009)
4.4.2
NHS Direct
All content by NHS Direct Wales is subject to in-house editorial and review
processes and sign-off either by the Health Information Services Manager or
Associate Medical Director. The service utilises the BMA/NHS Direct leaflet tool
and NHS Direct/NHS 24 website tool to accredit content (NHS Direct Wales,
2013). Information on conditions and treatments is provided by NHS Choices
in England, which is accredited with the Information Standard.
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4.4.3
EIDO Healthcare
EIDO Healthcare has been accredited with the Department of Health
Information Standard. The Information Standard has been established to
provide a ‘quality filter’ to help people decide what information is trustworthy
given the abundance of information available (NHS Choices, 2013). The
standard is a quality assurance tool established to improve the quality of
health and social care information. The independent certification scheme is
commissioned by NHS England and run by Capita on their behalf. Any
organisation achieving The Information Standard has undergone a rigorous
assessment to check that the information they produce is clear, accurate,
balanced, evidence-based and up-to-date (The Information Standard,
2013). In Eido’s case, documents are written by specialist surgeons and are
validated by clinicians, proof readers, patients, and external organisations such
as the Plain English Campaign and Patient Concern.
All documents are
evidence-based and are updated at least once a year based on changes in
medico-legal law and clinical practice (Eido Healthcare, 2013).
4.4.4
Third Sector Organisations
The Information Standard is a widely used quality assurance tool
sector signifying that the systems and methods used to produce
materials are robust and result in material that is accurate,
impartial, balanced, based on evidence and well-written (The
Standard, 2013).
in the third
information
accessible,
Information
Macmillan is a certified member of the Information Standard. To achieve this,
all information provided on the website and in other formats is written and
reviewed by a team of experienced information development nurses and
content editors to ensure it is of the highest standard. Compliance with the
Information Standard also ensures people affected by cancer are central to all
the content produced in terms of reviewing content for accessibility (Macmillan
Cancer Support, 2012).
Breast Cancer Care’s information is also accredited under the Department of
Health’s Information Standard and as such produces patient information which
is written by clinical specialists, reviewed by healthcare professionals and
people affected by breast cancer and subject to strict quality control measures
(Breast Cancer Care, 2013).
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Cancer Research UK is also an accredited member of the Department of Health
Information Standard. All content is reviewed by cancer specialists and
surgeons who specialise in treating cancer and by people affected by the
disease and updated regularly.
Additionally, a large number of cancer site specific organisations have also
been accredited with the Information Standard. Accredited organisations are
detailed in the table below.
Table of cancer site specific organisations
Information Standard as of July 2013
Beating Bowel Cancer
Bowel Cancer UK
Bone Cancer Research Trust
Brains Trust – the Meg Jones Brain
Cancer Charity
Breakthrough Breast Cancer
Breast Cancer Care
Jo’s Cervical Cancer Trust
Blood and Lymphatic Cancers
Leukaemia Care
Lymphoedema Support Network
accredited
with
the
Lymphoma Association
National Association of
Laryngectomee Clubs
Ovacome
Pancreatic Cancer Action
Prostate Cancer UK
Target Ovarian Cancer
The Brian Tumour Charity
The Eve Appeal
The Roy Castle Lung Cancer
Foundation
Given the variation in quality assurance mechanisms between different
sources, consideration should be given to greater usage of materials which
have been through rigorous accreditation processes and the establishment of
national standards to ensure consistency and quality of locally produced
information materials.
4.5
Who provides cancer information?
Evidence suggests that healthcare professionals are often viewed as the
gatekeepers of information for patients and their families and the preferred
information source (Bishop, 2012).
However there are also a range of
information services in operation in Wales which support directed information
delivery by phone, online and face-to-face.
Additionally, there are
opportunities for people to self-direct to web and hard copy sources of
information. It is important to understand the inter-relationship between the
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different information delivery mechanisms to understand
information context for people affected by cancer in Wales.
4.6
the
current
Healthcare professionals role in information provision
Evidence suggests that for many people affected by cancer, healthcare
professionals are viewed as the source of information and issues around
information delivery appear to be most apparent when there is less interaction
between clinicians and patients (Bishop, 2012).
Both the Code for Nurses and the General Medical Council’s good medical
practice guidelines state the importance of professionals’ role in providing
information to patients in a way they can understand (Nursing and Midwifery
Council, 2008) (General Medical Council, 2013). Information giving by health
care professionals is also central to the informed consent process. As part of
this process, healthcare professionals must ensure that patients are given
understandable
information
about
their
condition,
possible
treatments/investigations and their risks and benefits (including the
risks/benefits of doing nothing), the scope of the intended treatment and
whether additional procedures are likely to be necessary as part of the
procedure. Then once a decision to have a particular treatment/investigation
has been made, ensure that patients are provided with information about the
process and how they will feel afterwards. To comply with the consent
process, professionals must also ensure that information should be made
available in accessible formats and give consideration to the need for
information in other languages and access to further information and support.
Professionals are also expected to consider the amount of information required
and where patients do not wish to be given this level of information, document
this decision (Welsh Government, 2008).
In addition to the guidance around consent, there is also cancer-specific
guidance in place to support delivery in this area. The 2005 Cancer Standards
state that professionals should provide patients with general background
information about the specific cancers, .detail of treatment options, specific
local arrangements including information about the MDT and support services
and whom the patient should contact if necessary and details of local selfhelp/support groups and other appropriate organisations (Welsh Government,
2005).
Given the guidance and standards which govern information giving in a clinical
setting, it is important to understand compliance with the standards and
consent processes to gain a richer appreciation of information giving by
healthcare professionals on the ground. In 2009, the then Cancer Services Coordinating Group published a full report on compliance with the national cancer
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standards including information. The report revealed that despite significant
non-compliance within other key areas, achievement of standard CG5 focusing
on information for patients was high with all cancer sites reporting at least
75% of their MDTs achieving compliance (Cancer Services Co-ordinating
Group, 2009). However the focus of the standard is on written information
provided to patients and is measured on the documentation provided. It does
not take into account the information giving process and whether patients have
had their information needs met and thus has limitations as a measure of
health care professionals’ delivery in this area. This may partially explain the
apparent dichotomy between patient surveys which reveal that many patients
have not received the information required on a range of holistic issues and
high compliance against the cancer standards (South Wales Cancer Network,
2010) (South Wales Cancer Network, 2010) (North Wales Cancer Network,
2010). The upcoming Macmillan National Cancer Patient Experience survey
offers an opportunity to assess whether people understand the information
they have been given and should give a clearer indication as to the
effectiveness of current information provision within the cancer pathway.
Evidence obtained as part of the Macmillan All Wales Patient Information
Project, also suggests a more complex picture in terms of information delivery
by health care professionals (Williams, 2011) than that indicated by the results
of compliance against the cancer standards. The project report hints at
anecdotal evidence from health care professionals about a lack of clarity
around where responsibility lies for information giving and how it is
documented but unfortunately this line of enquiry is not attributed to particular
discussions or further developed. Issues around information provision by
healthcare professionals are also highlighted in a number of healthcare reports
by the Public Sector Ombudsman covering cases within cancer services such as
ABMU 2012 in relation to information at the end of treatment (Public Services
Ombudsman for Wales).
In recent policy documents, there has been a growing emphasis on personcentred care in response to evidence that care of this nature is key to
improving patient experience. Person-appropriate, timely information giving is
seen as a key tenet of person-centred care. Several studies on the barriers to
person-centred care have been published, highlighting the issue of lack of time
which impacts on the ability of healthcare professionals to give information to
patients and their families (West, 2005). Despite evidence around barriers to
person-centred care, there appears to be very limited evidence available on
how clinicians specifically view their information giving role, how this fits within
their duty of care and how this might be influenced. Given consistent evidence
that clinical staff are the preferred source of information for people affected by
cancer and highly important in terms of endorsing other information sources,
greater understanding is required of how health care professionals’ view their
role in this area. Further research should consider how information needs are
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assessed, how appropriate information is selected and to what extent clinicians
signpost to other relevant sources of information support.
4.7
What information services are available?
In addition to information delivery by health care professionals as part of the
clinical pathway, a range of information services exist in Wales. For the
purpose of this review, information services are defined as;
Services which provide personalised, high-quality, and accurate information
along with appropriate support to understand and act on it. (definition based
on (Macmillan Cancer Support, 2012).
Support services such as counselling, advice, and advocacy services which are
often based alongside information services are outside the scope of this
review.
The primary information delivery formats are telephone, web-based and face
to face. Each of these models varies according to format, language and
benefits. Each model will be discussed in turn below.
4.7.1
Telephone information services
Telephone-based information support offers a number of advantages as an
information delivery model. People are able to access support from home
which is important for people who are unwell/ living in rural areas or find it
difficult to access transport.
In addition, people can access services
anonymously and often outside of normal working hours which may suit those
who are working (Macmillan Cancer Support, 2012). Both generic and cancer
specific telephone information models exist in Wales.
Generic health information services
NHS Direct Wales provides generic health advice and information 24 hours a
day, seven days a week on the phone. As part of the service, health
information advisors offer advice about health, illness and the NHS. NHS
Direct operates a bilingual English-Welsh service and over 120 other languages
via a language line (NHS Direct Wales, 2013). NHS Direct Wales also has a
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national text phone number for the deaf, hard of hearing and those with
speech difficulties (NHS Direct Wales, 2013).
Dedicated cancer information over the phone
Four main providers have been identified as offering generic cancer information
and support to people affected by cancer in Wales over the phone, be they the
person with the diagnosis, a carer, friend or family member, namely Macmillan
Cancer Support, Tenovus, Cancer Research UK and Cancercareline. These
support lines provide information around diagnosis, treatment and living with
and beyond cancer and have the following opening times.
Name of organisation
Opening times
Macmillan Cancer Support
Mon – Fri, 9am -8pm
Tenovus
Mon – Sun, 8am-8pm
Cancer Research UK
Mon-Fri, 9am-5pm
Cancercareline
24 hours a day, 7 days a
week
Source: (Macmillan Cancer Support, 2013),
Research UK, 2013), (Cancercareline, 2013)
(Tenovus,
2013),
(Cancer
In addition to the more generalist cancer support lines, helplines are also
offered by a range of other site-specific UK-wide charities such as Breast
Cancer Care, Bowel Cancer UK, the Roy Castle Lung Foundation, Brain Tumour
UK and the Oesophageal Patients Association offering type-specific information
on diagnosis, treatment and living with and beyond cancer. These services are
particularly valuable for people with rarer cancers, whom evidence suggests
are more likely to experience greater isolation and may find it harder to access
information (Macmillan Cancer Support, 2012). These services are primarily
English language although a number of charities do offer an interpreter
service. No helpline actively markets a Welsh language option.
4.7.2
Web-based information services
Whilst there are ongoing issues around digital inclusion in Wales particularly for
older people and those living in deprived areas (Welsh Government, 2010), the
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internet and web based approach offer much as a format for patient
information. There is evidence to support the assertion that the internet has
multiple benefits in terms of social support and health information and
knowledge. The interactive nature of this format also allows patients to
assume more control over the way that they gather information (Bishop,
2012). A range of providers in Wales currently offer health information and
dedicated cancer information online in a variety of formats.
Generic health information services
NHS Direct Wales
NHS Direct Wales provides generic health advice and information on its
website. As part of its functions, the service provides written, downloadable
health information on a wide range of conditions, treatments and local health
services including cancer types. In addition, the website offers an online
enquiry service for health information queries and a number of self-assessment
tools. Information online and the enquiry service are also available in the
Welsh language (NHS Direct Wales, 2013).
Local health boards
Discussions with patient information leads within health boards suggested that
leaflets remain very much in vogue in terms of information provision.
Indications suggest that few health boards offered health information online
and those that did tended to upload leaflets in PDF format rather than produce
specific web content.
Thus, quality assurance processes mirrored those
available for leaflets. The interviews suggested that responsibility for website
content often sat within different teams to hard copy written information
content which may suggest an unco-ordinated approach to the area of
information production (Walters, 2013).
Dedicated Cancer information web-based services
As the internet has grown in popularity, a large number of third sector
providers are increasingly offering cancer information and support online.
These providers include Macmillan Cancer Support and Cancer Research UK
who produce and provide information across tumour types and a range of
tumour site specific organisations such as Breast Cancer Care, Bowel Cancer
UK and Lymphoma UK. Online information is comprehensive and covers signs
and symptoms, diagnosis, treatment, palliative care and living with and
beyond cancer. In addition to online services available by other third sector
producers of content, Maggies have launched MaggiesLink - an online
information portal providing basic content and linking to other quality assured
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websites (Maggies Centres, 2013). This website differs from others offered by
the third sector by offering a curatory service rather than original content.
Larger third sector organisations provide information in a variety of formats on
their websites including film, and offer discussion fora and information enquiry
services in addition to written content.
Again, these services can be
particularly important for people with rarer cancers who are more likely to feel
isolated during their illness (Macmillan Cancer Support, 2012) and also offer
opportunities for people to access peer support in a supportive environment
regardless of where they live or the time they are available to access services.
As tablets and android phones have gained ground, organisations are also
increasingly looking at how content can be accessed easily from different
platforms and maximising social media usage.
A number of smaller organisations taking part in the survey for this review
noted that they also produced their own online content. However this was in a
very limited capacity and mainly related to information with regards the
provision of services.
4.7.3
Face to face information
Face to face health information provision is provided in a variety of settings by
a range of providers. Face to face provision can play a role in helping people
to access high quality information and supporting people to understand the
information they have been given and ask questions (Picker Institute Europe,
2007). This is particularly important for more vulnerable groups who may
struggle to understand information provided or utilise other information
delivery models (Morris, 2006).
Generic face to face health information services
Face to face generic health information provision in Wales appears relatively
small scale in nature. The provision available is offered by NHS Direct, health
boards, libraries and third sector organisations.
NHS Direct offer ad hoc live information surgeries in venues across Wales
including GP surgeries, libraries and community venues where drop in visitors
are supported to access good quality health information around issues such as
long term conditions, making healthier choices and patient rights by health
information specialists (NHS Direct Wales, 2013).
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In addition to these ad hoc surgeries, interviews with patient information leads
have suggested that a number of health boards in Wales are considering
options around physical information hubs within hospital sites although
discussions are ongoing with regards the staffing of these hubs and the
potential for the involvement of the third sector (Walters, 2013).
Libraries Inspire: the Strategic Development Framework for Welsh Libraries
2012-2016 outlines libraries vision within this area with section 2.3 of the
document discussing the role that libraries can play in improving health and
wellbeing and addressing health inequalities, making particular reference to
the role of the libraries in supporting people living with long term conditions
within communities. Libraries across Wales have piloted a range of activities
with relation to health information and improving wellbeing including
information fairs where agencies are brought together to offer information, and
a variety of supportive reading groups and digital inclusion initiatives (Welsh
Government, 2012). Initiatives appear individual to different library services
and dependent on CYMAL grants rather than piloted and spread across Wales.
Book Prescription Wales is the exception to this rule and has been developed
as a national initiative suggesting the possibilities of libraries in this arena
(Welsh Government, 2012).
Cancer specific face to face information services
Face to face cancer information provision is offered in a variety of settings
across Wales, including hospitals, libraries and community venues by a range
of providers.
Information on available services has been obtained from
interviews with leading cancer charities and a survey of the activities of smaller
charities undertaken with the support of the Macmillan Patient Information and
Engagement Co-ordinator for the South Wales Cancer Network and the User
Involvement Facilitator for the North Wales Cancer Network.
The information suggests that there are 4 static library based services, 7 static
hospital based services and 12 community based services across Wales in
addition to a range of outreach services. The map below depicts the current
geography of cancer information services in Wales. In addition to mapping the
location of services, the map also notes the level of service offered by
organisations. It should be noted that the level of information service offered
by organisations varies significantly and a typology has been established to
assist in indicating the level of services offered by organisations.
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Organisations providing cancer information services
Map
identification
Organisation
Services
Stage of cancer journey
Macmillan Cancer Support
Pink star
(hospital)
A,B,C,D,E,F,G
All stages
Macmillan Cancer Support
Green star
(libraries)
A,B,C,D,E,F,G
All stages
Tenovus
A,B,C,D
All stages
Macmillan Cancer Support
Yellow star
(community)
A,B,C,D,E,F,G
All stages
Breast
Cancer
(hospital)
Care
A,C,D,E,F,G
All stages
Breast
Cancer
(community)
Care Yellow
(11)
A,C,D,E,F,G
All stages
Yellow circle
Pink diamond
diamond
Velindre
Red square
A,B,D,E,F
All stages
Bracken Trust (*)
1
A,B,F
All stages
2
A,B,C,G
All stages
Maggies
3
A,B,D,E
All stages
Cancer Aid Merthyr
4
A,B,D,F
All stages
Helping Hands
5
A,B
All stages except end of life
Rowan Tree Cancer Care
6
A,B
All stages
Cancercareline
7
A,B,C
All stages
Rhondda Breast Friends
8
A,B
All stages except end of life
George Thomas
9
A,B,G
Palliative/end of life
Marie Curie
10
A,B
Palliative/end of life
Cancer Information
Support Services
and
*partly funded by Macmillan Cancer Support
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Index of services
A
Stocks information leaflets
B
Face-to-face information giving service
C
Telephone helpline
D
Cancer information available on website
E
Information workshops
F
Organisation produces own cancer information
G
Information role listed within charitable purpose
As the map and tables above show, services self-describe as offering
information in a number of different formats including by phone, face-to-face
and online. It however became apparent when undertaking the survey and
holding discussions that different organisations’ perceptions of an information
service differ significantly and that there appears to be a lack of a common
language and understanding in relation to what an information service might
offer, what the core tenets of this should be and what level of intervention
services should be working at.
There were particular issues around
determining Welsh provision of face to face information with certain centres
purposely established to deliver supportive information with trained staff and
others offering information in addition to a range of other services. This
complex picture raises important questions as to the extent to which
information giving goes beyond giving a leaflet and is viewed as a skill and
information as a service in its own right.
As the map above indicates, information services tend to be primarily situated
within the South East of the country and within the vicinity of Swansea, in the
areas of greatest density of population with potential duplication between
services. There appear to be particular gaps in service in the South West of
Wales, in particular in Pembrokeshire, mid Wales (in particular Ceredigion) and
in the more rural southern-most areas of North Wales. Rurality presents
significant challenges for information service provision given that patients in
these more rural areas will travel for treatment and different models may need
to be considered to ensure equal access across Wales to information services.
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Most face-to-face information services available in Wales are non-site specific
and support not only the person with cancer but also those affected by the
disease. The majority of services offer information throughout the cancer
journey rather than focussing on particular points. The exceptions to this are
Marie Curie and George Thomas which provide information and support at the
palliative and end of life stage of the pathway. A number of organisations are
able to offer a Welsh language face to face service. This is the case in 4 of the
hospital settings, which are located in areas where there are higher number of
Welsh speakers.
4.8
What quality assurance processes are in place for information
services in Wales?
Structures and quality assurance mechanisms vary for the differing information
delivery models available namely telephone, web and face to face services
according to the nature of the provider.
4.8.1
Telephone information services
In terms of telephone services, both statutory and third sector providers utilise
a wide range of quality assurance processes. For example, NHS Direct calls
concerning health information are referred to a Health Information Adviser
(NHS Direct Wales, 2013). Health Information Advisers undergo a rigorous
Health Information induction programme which is tailored to equip staff with
the skills and knowledge to support their role and also regular update training
sessions. Staff utilise NHS Direct content, directory of services and accredited
websites and can send information to callers if required using information
prescription documentation.
Audits are regularly conducted to ensure
information provided is consistent in quality, reliable and evidence-based and
that the caller receives individualised, appropriate health information (NHS
Direct Wales, 2013).
There are also differences in the standards and processes followed by third
sector organisations in this area with certain organisations pursuing
accreditation from bodies and others not. At Breast Cancer Care, all calls are
answered by nurses and trained staff with experience of breast cancer. The
organisation is a member of the Helplines Association and has achieved the
quality standard (Breast Cancer Care, 2013). The Macmillan Support Line is
staffed by cancer specialists who are trained to provide practical, medical,
emotional and financial advice. Callers are referred to the most appropriate
expert for their enquiry and utilise Macmillan information and support services
(Macmillan Cancer Support, 2012). The Tenovus Cancer Support Line is
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staffed by an oncology nurse, a health and wellbeing advisor, a cancer support
advisor and trained volunteers (Tenovus, 2013). Cancercareline’s helpline is
run by the centre manager and trained volunteers (Walters C.,2013). Services
use their own websites and in-house directories to signpost callers to support.
Macmillan and Breast Cancer Care utilise their own cancer information
resources. Tenovus and Cancercareline do not produce their own information
and utilise content produced by other third sector organisations such as
Macmillan and Breast Cancer Care. All services are able to post information to
callers if requested.
4.8.2
Web-based services
Once again, quality assurance processes differ for this delivery model across
providers.
Processes governing NHS Direct’s health information online query service
mirror those in place for the telephone information service with trained health
information advisers and usage of accredited content (NHS Direct Wales,
2013).
Given the limited usage of specifically developed online information content by
health boards outside of PDF versions of leaflets, it has been difficult to
establish the quality assurance processes in place for developing online patient
information. This is further complicated by the fact that in many cases,
responsibility for website content often sits within different teams to written
information content in leaflet form and thus content may be subject to
different quality control processes (Walters, 2013).
Quality assurance processes are very much in evidence for this information
format within the third sector both in terms of content development and peer
support. A high number of organisations offering in-house information content
to people affected by cancer have detailed processes for the development of
content and have become certified members of the Department of Health
Information Standard (as discussed in depth in section 3.4). MaggiesLink links
to other quality assured websites which are evaluated using the LIDA tool
which looks at healthcare websites and scores how accessible the site is for
anyone with a disability, how usable it is (how easy it is to find the information
you want) and how reliable the information on the site is (Maggies, 2013).
Those organisations offering online communities and discussion fora have also
developed processes to ensure the supportive nature of discussion boards. For
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example, Breast Cancer Care moderators monitor all messages from new
members of online communities are not posted until they have been reviewed
(Breast Cancer Care, 2011). In addition, the charity’s Ask the Nurse service a dedicated and confidential e-mail service ensures that responses are checked
by three different nurses for accuracy (McCarthy, 2013). Similar monitoring
processes are available in other organisations.
4.8.3
Face to face services
Quality assurance in relation to face to face information services in Wales is a
complex issue and must be viewed within the context of a lack of common
understanding of what a face-to-face information service comprises. Given the
absence of a framework or national standards in this area both in terms of
content and services, a number of organisations have developed their own
internal or made use of existing kite marking models. For example, Macmillan
has developed the Macmillan Quality in Information and Support Services
developed as a set of guidelines especially for CISS, to provide more detailed
guidance on developing and delivering a high-quality service to people affected
by cancer (Macmillan Cancer Support, 2013).
Tenovus welfare benefits
services are accredited by Advice Quality Standard from Legal Services
Commission (Services Director, 2012). However this usage of quality marking
is not consistent across the sector.
This variety in quality assurance
approaches and lack of clarity may affect the ability of services to be seen as
trusted services and integrated within pathways of care.
4.9
How are information services funded?
There is significant variation within funding models for information services
across Wales both in terms of provider and the nature of delivery model.
Whilst the majority of telephone information services such as the Macmillan
Support Line and Breast Cancer Care helpline are core-funded as direct
services. The Cancercareline helpline is funded by the local authority and as
such offers a service to people affected by cancer in the county borough of
Caerphilly although the 24 hour nature of the service means that in practice it
also attracts callers from outside the borough (Walters C ,2013).
Similarly to telephone services, web-based services are predominantly viewed
as core services and are thus funded out of central budgets. Macmillan’s data
reveals that at a cost of 16p per reach, it is the cheapest of the information
services offered by Macmillan in terms of cost per reach (Macmillan Cancer
Support, 2011).
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Face-to face information services have developed incrementally over time and
are thus funded in a number of different ways. For example, Macmillan
services operate on a three year pump priming model with an expectation that
the funding for the service will be then picked up by the partner organisation
be that the health board, local authority or third sector organisation beyond
this time period. The only information post currently out of Macmillan funding
has been picked up by the local health board but given the current financial
climate, there are concerns around ensuring continuation funding for other
services once the pump priming comes to an end. Other information services
have been funded by Big Lottery Fund grants and a mixture of small grants
and fundraising efforts.
Undoubtably, the different funding approaches to services and lack of certainty
in terms of continuation funding has an impact on the nature of services both
in terms of data collection and potentially on the lack of a co-ordinated
approach and framework.
4.10
Who is accessing these services and for what purpose?
There is wide variation in terms of how activity and outcomes are recorded in
relation to cancer information services across Wales with no minimum dataset.
This lack of consistency in data collection methods hinders the ability of the
report to establish the reach of services and understand how the different
models of services are used, by whom and for what reason. With this caveat
in mind, below are discussed the findings of the review with relation to the
usage of services. Again, each information delivery model is discussed in turn.
4.10.1 Telephone based information services
In terms of generic health information telephone based support, during the
quarter ending March 2013, 54,358 calls were answered by NHS Direct Wales,
of which 47,817 (88%) were on the main 0845 number. Whilst the figures
appear high, caution must be taken when using the data as an indicator of the
usage of the phone line for non-emergency health information as the answered
calls also include triage from Accident and Emergency Departments and calls to
the ad hoc public health information lines.
The below table indicates Welsh usage of generic cancer information support
lines. Welsh usage of UK-wide tumour-specific sites has not been explored
here given the range of support lines available.
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Table showing Welsh usage of cancer information support lines 2012
against number of people diagnosed with and living with cancer in
Wales
Name of organisation
Number of
people in
Wales
diagnosed
with cancer
(2011)
Number of
people in
Wales living
with cancer
(2009)
Cancer 2851
(2012-13)
18,352
111,125
Tenovus
3000
(2001-12)
18,352
111,125
Cancer Research UK
327
(2012-13)
18,352
111,125
Cancercareline
480
(2012-13)
18,352
111,125
Macmillan
Support
Number of
calls from
Wales per
annum
Source: (Schunmann, 2013), (Tenovus, 2012), (Bath, 2013), (Cancercareline,
2013) (Wales Cancer Intelligence and Surveillance Unit, 2012); (Cancer
National Specialist Advisory Group, 2012).
The level of data available to analyse service trends varies significantly
between providers both in terms of numbers accessing services and caller
profile which limits this report’s ability to understand fully who is accessing
telephone services in Wales, for what purpose and how telephone based
services fit with the broader array of information services on offer. It is
however clear from the data available that given the potential reach of these
services when taking into account the numbers of people diagnosed with and
living with cancer in Wales, the current reach of 6658 callers across generic
telephone services appears limited. The figures raise questions as to the need
for services, the integration of services within clinical pathways and the current
marketing of these services.
Data on the most common queries and caller profile is not available for all
telephone services. However Breast Cancer Care and Macmillan have provided
data on these areas which allows a degree of insight into how telephone
services are utilised and by whom. It is clear from the Macmillan data that the
most common caller queries relate to welfare rights enquiries, financial issues
and treatment which mirrors the situation across the UK (Macmillan Cancer
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Support, 2012) Similarly, the Breast Cancer Care data revealed that queries
around non-clinical issues were common with the data showing that primary
topics of calls were callers’ emotions and side effects/ symptoms of treatment
(both at 12%) although a wide range of other topics were also raised by callers
such as breast awareness, hair loss and diagnostic procedures (Breast Cancer
Care, 2013).
In terms of caller profile, the 2012 Macmillan Support Line report on the
support line revealed that 69.1% of callers were women and the most common
age ranges of callers was 40-69 years. There were very few callers under the
age of 20 or over the age of 80 (Macmillan Cancer Support, 2012) with the
caller profile was relatively evenly spread between patients, friends, relatives
and carers. Macmillan research shows that the helpline is being used by
significant numbers of people from harder to reach groups such as older people
and those from low income backgrounds (Macmillan Cancer Support, 2012).
This is important in terms of the cancer information strategy given the make up of the Welsh cancer population in term of age and deprivation profile.
94.2% of callers to Breast Cancer Care were female with the highest number
of callers in the 40-49 and 50-59 age-groups (26.2% and 29.5%). 65.5% of
calls came from patients themselves although many callers chose not to
identify whether they were a patient or a friend or relative (Breast Cancer
Care, 2013).
Whilst data on usage of telephone services is limited, the evidence available
suggests that these services are reaching not only patients from key groups in
the cancer population but also family and friends of the person with the
diagnosis. This is important given findings that certain people’s preference
may be to receive information by proxy sources such as a friend or a relative
(Bishop, 2012).
4.10.2 Web-based information services
NHS Direct data suggests that usage of the web pages is growing as the
statistics below demonstrate and the number of calls to the service reducing.
Although it should be noted that given the dual role of NHS Direct as an
emergency function and health information service, it is difficult to gauge
whether these figures indicate increased usage of the site as a health
information portal or increased need for emergency information outside of core
hours.
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Statistics on NHS Direct website hits for Autumn 2012
Month
August 2012
September 2012
October 2012
Number of NHS Direct Number of hits on cancer
website hits
specific pages
136,823
3,566
145,594
3,873
191,163
5,650
Source: (NHS Direct Wales, 2013)
Usage of the online enquiry service has also increased over recent years with
646 enquiries recorded in the quarter January-March 2013 in comparison with
398 in the same quarter in 2008 (NHS Direct Wales, 2013), indicating that
more people are comfortable accessing information in this format.
In terms of the usage of web-based cancer specific services, it has been
difficult to gain Wales data on website hits and profile of users and thus
examine future trends with regards this delivery method and the extent to
which these services are helping to meet information need. However similarly
to NHS Direct, available statistics suggest a growing trend towards people
accessing cancer information online. In 2011, Macmillan estimated that their
website reached 3.9 million people across the UK – a 15% increase on the
numbers reached in 2010 (Macmillan Cancer Support, 2012). 61% of users
were families and friends of the person living with cancer and 14% were carers
(Macmillan Cancer Support, 2011) suggesting people accessing the website
were not necessarily the patient and thus might not receive information
elsewhere. Breast Cancer Care is also witnessing an increase in demand for its
web-based services with 1,485 Ask the Nurse e-mail enquiries received in 2012
compared to just over 800 in 2011. 67 of these e-mails were enquirers from
Wales (Breast Cancer Care, 2013). Maggies Cancer Links received 34,157 hits
in 2012, 3% of which were from Wales (Beard, 2013).
Evidence suggests that web-based information services are increasing in
popularity with a corresponding increase in people asking questions via e-mail.
Limited data hinders the ability of the review to pinpoint who is accessing webbased services and for what purpose but indications from available data
suggest that online information is accessed by friends and relatives in addition
to persons with a diagnosis again suggesting information needs for this cohort
and potential importance of information by proxy for people with cancer.
4.10.3 Face-to-face information services
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As with other information delivery models, it is difficult to estimate the reach
and thus impact of face-to-face information services due to differences in the
definition of an information service and data collection methods. For example,
Macmillan services employ specialist information facilitators or co-ordinators as
do Maggies. Tenovus Cancer Support Team members provide information as
part of their support worker role but their primary function is to provide
financial support, counselling, a social support service and a number of support
groups (Services Director, 2012). According to the results of the small survey
undertaken as part of the project, information services may be regarded as
small libraries of information within centres and information is often provided
as part of a range of available services which may include counselling, peer
support, advice rather than as a separate staffed service (Walters C., 2013).
The below table provides a snapshot of the varied reach of these services but
given the difficulties in definition outlined above and differences in how
numbers are recorded (for example number of unique service users or visits),
should be viewed as an indicative overview.
Organisation
Number
people
accessing
service
Macmillan
Cancer
Support
Tenovus
Maggies
Cancercareline
Rhondda
Breast
Friends
CISS
Helping Hands
Rowan Tree Cancer
Care
Bracken Trust
Marie Curie
George Thomas
8460
of Number of
people in
Wales
diagnosed
with cancer
(2011)
18,352
Number of
people in
Wales living
with cancer
(2009)
111,125
1194
5953
120 a year
1,147
18,352
18,352
18,352
18,352
111,125
111,125
111,125
111,125
12,000 a year
120 a year
360
18,352
18,352
18,352
111,125
111,125
111,125
18,352
18,352
600
a
year 18,352
(during face to
face visits)
111,125
111,125
111,125
600 a year
Given the WCISU estimate that 111,125 people are living with and beyond
cancer in Wales, these numbers suggest that services, as they are established
at the moment, are only reaching a small proportion of those diagnosed with
cancer in Wales. Whilst numbers are only part of the issue and it is of course
important to understand the quality of services, these findings raise questions
about the current array of services available as to whether they are meeting
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the needs of people with cancer and their carers, friends and families and the
extent of their integration within the cancer pathway.
Face to face information services are offered in a range of settings. Below
attention is focussed on who we know are accessing services in different
settings and for what reason to draw out potential key themes in the delivery
of face to face services.
Cancer information within hospital settings
As the map of current services highlights, Macmillan Cancer Support is one of
the main provider of cancer information and support services in Wales offering
services in clinical, library and community settings.
Data from this
organisation provides a useful insight into how information centres fit within
the cancer pathway.
There are 5 Macmillan local information and support centres in clinical settings
– University Hospital of Wales, Singleton Hospital, Wrexham Maelor Hospital,
Glan Clwyd Hospital and Ysbyty Gwynedd. The Macmillan local information and
support centres offer people affected by cancer the opportunity to ask
questions and talk through their concerns and access high quality, information
from Macmillan information professionals and trained volunteers. Information
specialists can support clients to understand and act on the information
provided and also signpost to other appropriate services if required.
Once again it is difficult to gain a full understanding of the reach and impact of
the information services in hospital settings in Wales. Each service collects
data and produces annual reports but at present there are significant
differences in the data recorded in terms of profile of users and levels of
intervention. Plans are afoot to improve the data available through developing
new monitoring tools for centres and a new longitudinal evaluation covering all
cancer information and support services in Wales.
It is apparent from studying the annual reports from the varied Macmillan
services across Wales that the services within hospital settings function very
differently to those within community settings. Data from the clinical settings
at University Hospital of Wales, Cardiff, Wrexham Maelor, Glan Clwyd hospital
and Ysbyty Gwynedd suggests that the hospital-based services have a higher
footfall than more community based services as the graph below, which looks
at the total reach estimation for one year, demonstrates;
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(Macmillan Cancer Support, 2013)
From studying the data from the cancer centres based in clinical settings, it is
clear that the most common enquiries at the clinical centres relate not only to
cancer information questions around tumour types and treatments, but also
benefits and emotional support. This appears to suggest a role for centres in
providing information on more holistic, less clinical aspects of care.
Data on the intervention levels of clients within clinical settings suggest that
whilst the centres’ function as a place to access high quality information is
important, centres have a wider role in supporting people to understand their
information needs and act on the information received.
This is clearly
exemplified in the data from the University Hospital of Wales Service detailed
below but was also apparent from the annual reports of the other services in
clinical settings at Glan Clwyd, Ysbyty Gwynedd and Wrexham Maelor which
highlight the significant number of clients accessing services at level 2 and 3.
Levels of Intervention for University Hospital of Wales Macmillan
Cancer Information and Support Service, January – July 2012
Level of intervention
Number of clients
0 (leaflet taken)
635
1
2 (drop in, referral, telephone 272
enquiry; assessment of information
needs;
appropriate
verbal
information given, backed up by
written information, appropriate
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level of psychological support given)
3 (drop in, referral, telephone 20
enquiry; assessment of information
needs;
appropriate
verbal
information given, backed up by
written information, appropriate
level of psychological support given;
generates further research for
information material and/or referral,
signposting to appropriate support)
Whilst data is limited on this key area, it is clear that services in clinical
settings support the needs of patients and their families throughout the cancer
pathway and also provide support for health professionals in a personal and
professional capacity.
Given limitations in data around referral routes, it is difficult to draw firm
conclusions around the extent of the integration of hospital-based information
services within cancer pathways. One hospital based service based its case for
continuation funding on how the service supported the work of local Clinical
Nurse Specialists arguing that the average amount of support time that CNS
needed to offer individual cancer patients was reduced by enabling them to
refer patients on to the CISS for their information needs (Arad Research,
2013). However other service reports suggest that referrals from healthcare
professionals are limited and most footfall is passing trade rather than
referrals. Minimum datasets should be established both to capture details of
clients referral routes and background to better understand fit of services
within cancer pathways.
Library settings
Again, insights on cancer information services within library settings have been
primarily based on data captured by Macmillan as the main provider of cancer
information services in this area.
Macmillan libraries services have developed in response to the changing cancer
story, growing needs within communities and linkages with the health and
wellbeing ambitions of libraries. The first Macmillan library service launched in
Rhondda Cynon Taff in Autumn 2009, quickly followed by Torfaen in Winter
2010, Monmouthshire in Summer 2011 and Blaenau Gwent in Winter 2011 and
a new service is being proposed in North Wales.
The library information services’ location within communities and outside of
cancer centres and clinical settings has presented services with a number of
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challenges and opportunities. Footfall for drop in sessions at centres has
traditionally been lower than in clinical settings as the table below indicates.
(Macmillan Cancer Support, 2013)
Given the lower demand for drop in sessions within these settings, a number of
services have branched out to offer group activities such as shared reading
sessions and outreach work, thus appropriating a more supportive less
information focussed role.
Initial findings from the evaluation of information services conducted by Arad
Research has found that coordinators in library settings appear to find it more
challenging to develop links with individuals and organisations within the
health sector encompassing primary and acute care and recruit potential
steering group members from this sector (Arad Research, 2013).
This
suggests less integration with these projects within the cancer pathway and is
a potential partial explanation for lower footfall in services. Limited data
collection on referral routes mean it is difficult to substantiate these arguments
with evidence of a quantitative nature.
Again, due to differences in data collection, it is difficult to gain a sense of
primary enquiry raised or stage in the cancer pathway of clients but it is clear
that cancer information and support services are accessed by a range of
individuals, from the worried well to people living with and beyond cancer and
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their families for a wide range of reasons. Common themes include nonclinical issues such as financial worries, emotional support, housing issues.
The broad nature of enquiries received and low footfall suggest that
consideration should be given to rethinking this model of provision and
perhaps give consideration to the provision of a non-cancer specific information
service within libraries.
Community settings
A number of organisations large and small offer information services in
community or outreach settings across Wales. Presented below are the
indicative reach of services in relation to the areas which they serve. Once
again, data collection varies significantly according to the organisation’s
definition of an information service and whether numbers are recorded per visit
or per unique visitor. Thus it is difficult to calculate how many people are
accessing services, at what stage in the pathway and for what purpose and
analyse integration within care pathways.
Name of
service
Average
number of
annual client
interventions
per annum
Number of
people living
with cancer in
the local
authority
which the
service covers
2010
Maggies
1588
Covers
South
Wales
Tenovus
1194
Covers various Covers various
local
authority local
authority
areas
across areas
across
Wales
Wales
Bracken Trust
(Powys)
600
5860
833
Cancer Aid
Merthyr (Merthyr
Tydfil)
520
2006
352
Rowan Tree
Cancer Care
(Rhondda Cynon
Taff)
520
8318
471
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Number of
people
diagnosed
with cancer
all of Covers all of South
West West Wales
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Cancercareline
(Caerphilly)
120
6096
999
Helping Hands
(Caerphilly)
120
6096
999
Cancer
12,000
Information and
Support Services
(Swansea, Neath
Port Talbot,
Carmarthenshire)
8548 – Swansea
1272– Swansea
Rhondda Breast
Friends
8318
1,147
823
–
Neath 5310–
Neath
Port Talbot
Port Talbot
1233
- 7498
Carmarthenshire Carmarthenshire
471
Once again, data collection varies significantly according to the organisation’s
definition of an information service and whether numbers are recorded per visit
or per unique visitor. There is also little data available on visitor profile,
primary enquiry or referral source.
The issue of service definition is
particularly acute for these services as it is uncertain whether figures collated
may also include those utilising other services such as welfare benefits advice
and counselling. The lack of consistent data also makes it difficult to calculate
how many people are accessing services, at what stage in the pathway and for
what purpose and analyse integration within care pathways.
5
Conclusions and recommendations
5.1
Conclusions
Key policy documents in Wales consistently reference the importance of high
quality information. However there are few initiatives in place to support the
implementation of commitments in this area.
Information content is produced by a large number of organisations. There is
evidence of significant duplication of effort, with cost and resource
implications. Additionally, there is evidence of gaps in terms of the availability
of information in other languages and different formats.
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Quality assurance mechanisms vary with greater consistency of approach and
usage of standards in the third sector.
Evidence suggests that healthcare professionals are regarded as the preferred
information source for patients and their families. Despite this, there appears
little evidence on how health care professionals view their information giving
role, how they assess information need and their willingness to refer to other
information services.
An array of other information services exist in Wales including telephone, web
and face to face support in a variety of settings including hospital, library and
community. As services have developed incrementally over time, there is
evidence of duplication, differences in definition of services and remit, differing
quality assurance mechanisms and funding models. There is little evidence of
minimum data set usage and thus it is difficult to fully understand who are
utilising services for what purpose and the extent of integration of services
within care pathways.
The limited evidence available on usage of services in Wales suggests that the
internet is growing in importance as a source of information and a place to ask
questions. Face to face and telephone based services remain valuable in terms
of alternative sources of information particularly for more vulnerable groups.
5.2
Recommendations
Despite a clear policy context recognising the importance of high quality
information, the current approach to information provision is patchy and
localised across Wales with few national initiatives such as standards and
frameworks underpinning the rhetoric and a low profile within government and
health boards. A national vision and strategic approach is required to bring coordination to this area which is central to the self care agenda and good
patient experience.
Information content production requires careful consideration as part of a
strategic approach to provision.
Quality assured content should be coordinated nationally to ensure provision is clear, accurate, balanced, evidencebased, up-to-date and available in a variety of formats and languages. This
approach would bring economies of scale in terms of cost and resource,
improve quality and reduce risk. Consideration should be given to utilising
third sector content in place of developing content in-house which is an
approach followed by health information services in England and Scotland
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given rigorous quality assurance mechanisms which are followed by many such
organisations.
There will remain a need for a degree of locally produced information for
contact and venue detail etcetera. National standards should be developed to
ensure all local information produced is accessible and consistently of a high
quality.
Given consistent learning that health care professionals are viewed as the
trusted source for information and key to endorsing and signposting to other
sources of information, research into how clinicians view their information
giving role, where responsibility lies for information giving within teams and
how information giving is documented should be undertaken as a priority. In
addition, attention should be focussed on encouraging clinicians to utilise the
same quality assured content across Wales to ensure consistency, quality and
choice of materials.
Given growing demands on clinicians’ time and an increasing cancer
population, there will be a renewed emphasis in the future on supporting
people to self care and a need to signpost to appropriate information and
sources of support. A variety of information delivery models will need to be
put in place to meet the needs of the Welsh cancer population, both indirect
and direct information sources.
Increasingly the web is a growing in importance as an information source both
for people with cancer and their friends and families. A health information
portal which stores and layers quality assured content in a variety of formats
should be made available. This portal should be marketed to clinicians,
services and people affected by cancer and should be broader than cancer to
ensure information is co-ordinated, has budget to be marketed effectively and
meets the needs of those with co-morbidities. Possibilities around existing
platforms should be explored.
Whilst indications suggest that online content will be key to meeting demand
for health information in the future, it is important to recognise that the
efficacy of the internet as a format for patient information is limited by access
to and ability to use computer technology. Evidence suggests that alternate
delivery mechanisms will also need to be put in place including phone and face
to face services to support people to access the information that they require.
Common content should be used by all services to increase efficiency, quality
and consistency under the auspices of the portal.
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To ensure effective use of resources and quality of information services, a
national framework for information services should be established and national
standards introduced as are currently under consideration for the advice
sector. These improvement measures should encourage greater integration of
services into care pathways. National minimum datasets should be put in
place to ensure improved understanding of who is accessing services and for
what purpose. Given current usage of services, challenges of rurality and high
levels of co-morbidities, consideration should be given to moving toward more
generic information service models.
6
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