Download Analysis of consultation responses: Cancer Taskforce

Independent Cancer Taskforce
Analysis of written evidence
July 2015
1. Introduction
1.1 The six-week consultation on the new cancer strategy was launched by the independent Cancer
Taskforce on 14th January 2015 and closed on 27th February 2015. The Cancer Taskforce is
grateful to all those who took the time to respond to the consultation. 226 formal written
responses were received.
1.2 The consultation asked three overarching questions:
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The three commitments that you would like to see in a new cancer strategy that would
significantly improve cancer services for patients/the health of the public, referencing
any relevant evidence and costing information
Examples of good practice in cancer services that you would like to see replicated across
the country
The biggest barrier to improving cancer services
1.3 The 226 responses were predominantly comprised of members of the public, including people
who self-defined as having been affected by cancer (99 responses, 44%) and responses received
from an organisation (94 responses, 42%). Those organisations that submitted evidence are
listed in Annex 1. Professionals, including medical professionals who were not representing
their organisation, made up 13% of responses (30 responses).
1.4 This document provides a summary of the analysis of the written call for evidence.
1.5 It should be noted that although the consultation was open for anyone to respond, those who
chose to respond were self-selected. Therefore, the responses received cannot be generalised
or be considered to be fully representative. Additionally, not all respondents commented on
every sub theme/question in the consultation; some responded to all questions, some to parts
of the questions and some commented broadly.
1.6 The numbers of responses reported in this analysis are actual numbers and have not been
weighted. The results of the consultation have been analysed by the Independent Cancer
Taskforce Secretariat.
1.7 This was not the only mechanism to input to strategy development, and as such is not
representative of the full breadth of evidence that the Independent Cancer Taskforce has
considered.
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2. Overarching themes covered
2.1 A wide array of issues was reported in the overall consultation responses. Broadly, the
responses could be grouped into 24 key themes (see Figure 1). Of all the responses received,
early diagnosis (12%), patient experience (12%), living with and beyond cancer (9%),
information (7%), medicines (7%), and issues categorised as ‘other’ (9%) by the secretariat (in
that they did not clearly fall under an existing category); accounted for over 50% of all themes
discussed.
Figure 1: Make up of key themes in the consultation overall
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3. Commitments in a new cancer strategy
Consultation Question: what are the three commitments you would like to see in a new cancer
strategy that would significantly improve cancer services for patients/the health of the public,
referencing any relevant evidence and costing information.
3.1 The first question in the consultation invited views on the top three commitments individuals
would like to see in a new cancer strategy. Responses covered a range of key themes which are
discussed in detail below.
Early diagnosis
3.2 Nearly half of responses saying early diagnosis should be a commitment in a new cancer
strategy were from professionals (46%), with 29% from public respondents. 1 in 7 of those who
raised the issue of early diagnosis suggested that there should be a commitment to national
symptom awareness campaigns in the strategy. The suggestion of running or continuing
national campaigns as a commitment in the new strategy was principally raised by
organisations.
3.3 However, concerns were raised by a small number of respondents regarding access to, and
capacity of, diagnostics, with one respondent saying:
“Early diagnosis strategies, e.g., ‘Be Clear’ campaigns have left secondary and tertiary
diagnostic services struggling to cope with demand for both diagnostics and treatment.
Capacity planning for diagnostics, and corresponding investment, must be part of the
strategy”.
Living with and beyond cancer
3.4 Nearly half of responses suggesting that living with and beyond cancer should be a commitment
in a new strategy were from organisations (47%), with just over a third from members of the
public (34%).
3.5 Nearly one fifth of responses suggested that access to services should be a specific initiative
within the theme of living with and beyond cancer. Access to services appeared to be a specific
concern for organisations and professionals. Access to rehabilitation services was the most
common service mentioned. Other specific services that respondents said they would like to
see better access to include: social workers, clinical nurse specialists (CNS), care coordinators
and nutritionists. There was a feeling that there was not enough support post-treatment to help
people get back to a normal life and manage the consequences of treatment, as exemplified by
this respondent:
“After care once you have had all the treatments and nothing is left to do, you are sent away
with a folder which can frighten people and told see you in a year’s time, as a patient you
feel abandoned, even if it was just a phone call from the cancer nurse every so often just to
check how you are feeling and if you have any problems, as the trouble is that sometime you
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don't like to bother them with things that seem trivial.”
3.6 Giving cancer patients a holistic support package to meet their wider needs was a particular
commitment that was championed by organisations. Suggestions included ensuring individuals
were given a holistic needs assessment and ‘Moving On’ consultations.
3.7 A smaller number of respondents (7%), all of which were organisations, reported that there
should be a commitment around peer review measures for initiatives including cancer
rehabilitation pathways, ‘Moving On’ consultations at key transition points, fatigue
management services, lymphedema services and the recovery package.
Patient experience
3.8 A commitment to improve patient experience was mentioned by 12% of all respondents. This
was a particular issue for the public, with over half (54%) of responses that raised patient
experience as a potential commitment being from public respondents.
3.9 One in five respondents who reported wanting to see a commitment on patient experience
specifically mentioned the need for patients to have a designated, named clinical nurse
specialist, acting as a point of contact and as a coordinator. This commitment was raised by
both the public and organisations.
3.10 One in 10 of responses that mentioned patient experience reported wanting to see a
commitment on better communication from clinicians, with this being a particular concern for
the public. Responses suggested that clinical staff should communicate with kindness and
address individuals’ concerns. For example, one response reported:
“When you are diagnosed with cancer you become a patient and in the eyes of clinical staff
you are no longer a person”
3.11 The importance of communication was especially highlighted as an essential part of creating a
smooth pathway for people with cancer, including between different parts of the health system
(such as between primary and secondary care and specialist centres).
3.12 Aspects which may need more improvements included ensuring support for people with
secondary cancers; and access to services including complementary therapies.
3.13 Some people cited good experiences they had had, often praising health professionals who had
been very supportive and communicative. Some respondents, especially those from
organisations, supported the Cancer Patient Experience Survey (CPES) and the improvements it
had brought about, and wanted it to remain. It was a useful tool and ‘necessary to hold Trusts to
account’.
Research
3.14 Research was mentioned in 47 responses. Around a third of those who wanted ‘research’
included as a commitment wanted patients’ access to clinical trials increased. This was
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predominantly stated in submissions from organisations , and in some cases specified a specific
group of patients to increase participation, including children; teenagers and young adults;
people with brain tumours; and people with lung cancer, prostate cancer, ovarian cancer,
myeloma, leukaemia, lymphoma, and rarer cancers.
3.15 Increasing the amount of research through more investment was also a commitment requested
by one in five respondents – with around half of these specifying that they would like this
increase in investment to be directed towards research into prevention and the causes of
cancer, as well as what can be done to tackle them, such as:
“More research into the most effective ways of changing people’s lifestyles might help
prevent many cancers.”
Medicines
3.16 38 respondents (17%) mentioned better access to medicines as a commitment desired.
3.17 The vast majority (21) of respondents wanted commitments made to address issues with the
funding of new medicines and in particular wanted to see improvements made to the NICE
appraisal process and to the Cancer Drugs Fund (CDF). Some raised concerns about the removal
of some medicines from the CDF. Others highlighted other schemes that could be used for
funding medicines.
3.18 A large number of other respondents (14) were concerned with the availability of, and access
to, cancer medicines. Some highlighted certain groups of patients who had poorer access to
medicines including children and those with rarer cancers; others wanted fairer access for all
patients to medicines, for example:
“Cancer patients should have access to the drugs they need irrespective of where they live,
age or type of cancer.”
Prevention
3.19 Preventing cancer was mentioned in 38 different responses, around 17% of all respondents. It
was predominantly raised by organisations or professionals (78% of those who raised it).
3.20 Nearly half (45%) of those who flagged prevention as a commitment they would like to see
suggested that the strategy should prioritise more education or clear advice to the public about
risk factors and lifestyle changes which can prevent cancer, including for specific cancer types
(such as breast or ovarian). Several flagged that this education should happen at an early age
and gave examples of existing schemes which do this (such as Change4Life, #RethinkCancer or
HeadSmart). It was also felt to be important that health professionals use ‘every contact’ to flag
behavioural change, especially to people who were at higher risk (such as people who smoke).
One in ten ‘prevention’ responses also flagged the importance of secondary prevention.
3.21 Alcohol, weight, physical activity, diet, environmental, occupational, infectious and genetic
causes of cancer were all flagged as areas to target. The most commonly raised risk factor was
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tobacco with one in five ‘prevention’ responses including tobacco control as a commitment
they would like to see in the strategy. The main call was for a population approach to tobacco
control (raised in eight responses), including a commitment to a new tobacco control strategy
and access to smoking cessation services.
3.22 Increased research, inequalities, chemoprevention and extending HPV vaccination were also
raised.
Workforce
3.23 Workforce was mentioned in 14% of the responses. The main issue raised by respondents was
the positive impact of patients having access to a CNS and the need for fairer access across all
cancer types. To a lesser extent, respondents wanted all patients to have their care discussed at
a Multidisciplinary Team (MDT).
3.24 Respondents raised both skill and capacity gaps within the system, highlighting the issues this
was causing and calling for gaps to be addressed. Nursing and diagnostic capacity gaps were
mentioned in particular.
3.25 Some responses commented on education at both an undergraduate and post graduate level
and highlighted more effective ways of working. Examples included optimising skill mix, the
formation of virtual MDTs and the use of emerging technologies. Some also wanted better
workforce planning.
Screening
3.26 Screening was mentioned in 29 different responses, or around 13% of the total. Around half of
these were from organisations and professionals; the other half coming from the public.
3.27 Many submissions to the written evidence from members of the public called for a lower
threshold age for breast screening, or for screening to be conducted more frequently. There
was also a call for a lower threshold age for cervical screening. Supporting evidence for these
calls was not provided.
3.28 Introducing new screening programmes for lung, ovarian and prostate cancer were included in
responses. One in four ‘screening’ responses called for the introduction of a lung cancer
screening pilot, preceding a programme, for high-risk individuals (smokers and ex-smokers),
subject to outcomes of ongoing research. Calls were made to pilot an ovarian cancer screening
programme, subject to the results of the UK Collaborative Trial of Ovarian Cancer Screening
(UKCTOCS).
3.29 One in five responses about screening also flagged that uptake of existing screening
programmes should be addressed and that this should be tackled through evidence-based,
targeted interventions. Many suggested that the involvement of primary care, and specifically
GPs, would be beneficial, such as this suggestion:
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“many practices now send letters or telephone patients who fail to take up screening
opportunities. This has resulted in higher screening uptake in these practices”
End of life
3.30 Respondents raised a wish to move away from a focus on dying at home to one of choice of
place of death and quality of death. A strong theme was a recommendation for there to be
earlier conversations about dying, so that people can access supportive and palliative care
earlier. Palliative care services also need to be available across more of the week, 24/7
preferably.
Information
3.31 Respondents reported that patients want empathetic communication, accurate and up-to-date
information including clarity about treatment options, and the consequences of treatment. One
respondent said:
‘Staff lose sight of who you are and the emotions you are going through. This particularly
applies to consultants many of whom are egotistical and aloof’
3.32 Information needs to be provided with good support. The support of a CNS to provide
information and empathy was particularly mentioned by some respondents.
Data
3.33 Fifteen per cent of respondents mentioned data issues as commitments they wished to see in
the strategy. Common themes included ensuring accurate collection of data, especially SACT
and registry data, ensuring organisations have access to data for research and information
purposes, and using data to drive service improvements. Better data collection for specific
groups, particularly children and young people and people with secondary breast cancer was
also suggested.
Local organisation and accountability
3.34 25 responses (11%) commented on local organisation and accountability as a commitment.
Commitments respondents want to see implemented within the local organisation and
accountability theme included retaining and revising peer review, improving integration
between primary and second care, retaining or reforming networks and clear national
leadership.
“There is a need to work across primary, secondary, tertiary and social care sectors in order
to promote better integration and co-ordination (with less duplication) so that people feel
that the care is centred around their needs”
Innovation to practice
3.35 There were 31 (14%) suggestions regarding commitments as part of the innovation to practice
theme. Increasing access to clinical trials was a common suggestion as was ensuring that new
technologies and innovations are adopted rapidly.
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Molecular diagnostics
3.36 There were 17 responses regarding molecular diagnostics, the majority of which were from
organisations. Access to molecular diagnostics was a key commitment emerging from the
responses; respondents were keen to see increased and equitable access to molecular and
genetic testing. A number of responses also called for a commitment and investment to fund
and resource molecular diagnostics.
Radiotherapy
3.37 There were 15 responses about radiotherapy, just over half of which were from organisations.
Two strong themes emerged from the responses: equitable access to radiotherapy, and early
adoption of new innovations. Other issues raised in the responses included reducing waiting
times and implementing the NHS England/Cancer Research UK Vision for Radiotherapy 20142024
Surgery
3.38 Ten responses included views on surgery, over half of which were from organisations. Early
adoption of new techniques, and equitable access to cancer surgery, were key issues.
Inequalities
3.39 Inequalities were mentioned in 21 responses to the consultation; over 60% of these responses
were from organisations. A number of the responses were quite broad and overarching and
emphasised the need to address variation, e.g:
“action to address inequalities and unwarranted variation in outcomes and access to services
(e.g., age, ethnicity and social deprivation)”
3.40 A smaller number of respondents raised more specific issues such as reducing the age of
mammograms to screen for breast cancer.
3.41 Eight responses specifically flagged ‘older people’ as a theme. Respondents wanted older
people to be properly assessed and treated based on their clinical needs and a few respondents
called for national measurements of outcomes for older people or more guidance for
commissioners and providers on what outcomes they should be delivering.
4. Examples of good practice in cancer services
Consultation Question: what are examples of good practice in cancer services that you would like
to see replicated across the country?
4.1 In total there were 244 examples provided by respondents of good practice, the majority of
which were early diagnosis (39), patient experience (35) and living with and beyond cancer (67).
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4.2 Some examples of good practice were mentioned multiple times and often specific trusts or
services were mentioned. Within early diagnosis, good practice examples revolved around
streamlining and speeding up the diagnostic pathway by permitting ‘straight to test’ initiatives.
Within the theme of patient experience, good practice examples frequently cited the support of
a CNS and often the provision of holistic services such as psychological support or easy access to
wig services as well as patient involvement.
4.3 Within the theme of living with and beyond cancer, examples of good practice included
Macmillan’s Recovery Package, rehabilitation services including those established to support
people with the late consequences and secondary cancer services. In radiotherapy the
innovation fund that led to the introduction of IMRT and SRS was also mentioned by a few
respondents.
5. Barriers to good cancer care.
Consultation Question: what are the biggest barriers to improving cancer services?
5.1 In total, there were 269 examples of barriers provided by respondents; some respondents did
not identify any barriers while some mentioned more than one. The most common barriers
were identified within the themes of levers and incentives (41, 18%) and local organisation and
accountability (64, 28%).
5.2 26 (12%) respondents mentioned money, funding or finances as being barriers to cancer care.
Respondents also cited lack of national leadership, fragmented commissioning and the lack of
integration of primary and secondary care as barriers to cancer care. 19 respondents also cited
barriers to early diagnosis which included people being slow to seek help and people not being
aware of the signs and symptoms. 17 respondents also identified barriers within the workforce,
particularly skills and capacity shortages. The failure to encourage research and innovation and
share data was another common theme, as was the costs of drugs.
Annex 1: List of organisations submitted response
Alcohol Alliance UK
All Party Parliamentary Group on Cancer
Alliance for Cancer Prevention
Anthony Nolan
ASH
Association for Palliative Medicine
Association of Chartered Physiotherapists in Oncology and Palliative Care
Association of Medical Research Charities
Association of the British Pharmaceutical Industry
AstraZeneca
Baxter Healthcare
Beating Bowel Cancer
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Bowel Cancer UK
Brain Tumour Research
Breakthrough Breast Cancer
Breast Cancer Campaign
Breast Cancer Care
Breast Cancer UK
British Association of Dermatologists
British Dental Association
British Lung Foundation
British Thoracic Society
Cancer Campaigning Group
Cancer Nursing Partnership
Cancer Research UK
Cancer52
Children’s Cancer Clinical Reference Group
Chronic Lymphocitic Leukaemia Support Association
Chronic Myeloid Leukaemia Support Group
CLIC Sargent
Common Cancers Coalition
Consequences of Cancer and its Treatment Community of Influence
CoppaFeel
Experimental Cancer Medicine Centres
Florence Nightingale School of Nursing & Midwifery
GIST Support UK
Heart of England NHS Foundation Trust
Ipswich and East Suffolk Cancer Locality Group
Janssen Pharmaceuticals
Jo's Cervical Cancer Trust
Kent, Surrey and Sussex Cancer Partnership Research Group
Leukaemia & Lymphoma Research
Leukaemia CARE
Lilly PACE
Liverpool CCG
London Cancer Alliance
London Cancer
Lymphoma Association
Macmillan Cancer Support
Marie Curie Cancer Care
NCRI CSG Chairs and NIHR LCRN
MDS UK Patient Support Group
Medical Detection Dogs
Merck Serono Ltd
Merck Sharp & Dohme Ltd
Myeloma UK
National Chemotheraphy Board
National Council for Palliative Care & Dying
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NET Patient Foundation
NHS Supply Chain
NIHR Psychosocial Oncology and Survivorship Clinical Studies Group
Northern England Strategic Clinical Networks Network Service Users Partnership Group
Novartis Pharmaceuticals UK Ltd
Oesophageal Cancer Westminster Campaign
Ovarian Cancer Action
Pancreatic Cancer UK
Pfizer
Prostate Cancer Support Federation
Prostate Cancer UK
Radiotherapy Board
Rarer Cancers Foundation
Rehabilitation Programme Team at NHS England
Roy Castle Lung Cancer Foundation
Royal College of General Practitioners
Royal College of Physicians
Royal College of Radiologists
Society and College of Radiographers
South Tees Hospitals NHS Foundation Trust
South Yorkshire, Bassetlaw and North Derbyshire Macmillan Survivorship Programme
team
Spire Healthcare Groups
Target Ovarian Cancer
Teenage and Young Adult CRG Patient and Public Engagement Group
Teenage Cancer Trust
The Brain Tumour Charity
The British Lymphology Society
Transforming Cancer Services Team for London
UK Lung Cancer Coalition
Worcestershire Acute Hospitals NHS Trust Cancer Services Team
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