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Cancer Campaigning Group response to the consultation on the review of the
Cancer Reform Strategy
About the Cancer Campaigning Group
The Cancer Campaigning Group (CCG) is delighted to respond to this review of the Cancer Reform
Strategy (CRS). As a coalition of over 40 charities representing patients and carers across different
cancer types, we believe that we can offer valuable insight on how the CRS could be refreshed to
take into account the changing political and economic environment.
Our response has been developed following a period of consultation with our members and
represents the views of the CCG as a whole. In addition, many of our members will choose to
submit their own responses enabling them to focus on their particular areas of expertise.
Overview
We fully support the aims of the CRS and the progress that has been made since 2007, including
the increased focus on tackling cancer inequalities, survivorship and early diagnosis. Inpatient care
has been a particular area of improvement, including the enhanced recovery programme and
reductions in emergency admissions and lengths of stay for cancer patients.
The leadership of the National Cancer Director and the contribution of the National Cancer Action
Team and cancer networks have enabled clinicians, nurses and other health professionals to
implement reforms which have improved patient outcomes and patient experience of their care.
However, England still lags behind the rest of Europe in many aspects of cancer services.
Outcomes are poorer and access to new treatments is far more restricted.
This process of refreshing the CRS provides an opportunity to focus on those measures that will
have the greatest impact on outcomes for cancer patients from prevention, through early diagnosis,
treatment and care, to survivorship or end of life. Research that increases our understanding of
different cancers – including psychosocial research - and clinical trials are also crucial to
developing effective treatments and interventions to reduce cancer incidence and improve survival
rates and quality of life for those who are diagnosed with cancer.
The Cancer Campaigning Group believes that every cancer service should aspire to be truly world
class – ensuring that the best in Europe is available everywhere in England.
1. Are there particular priority areas for action which need to be addressed if cancer
outcomes are to be improved?
In answering this question it is important to consider two different types of outcomes: firstly,
outcomes for individuals i.e. was the individual’s outcome the best it could have been both in terms
of clinical outcomes and patient experience; and secondly, overall outcomes such as incidence,
mortality and survival. We believe that both of these should be at the heart of the CRS. Each will
require a different approach but progress towards the former will have a positive effect on the latter.
In a time of economic difficulty, prioritising those actions that are likely to represent a good use of
resources is important. However, in low-population or high-cost areas such as treatment for rarer
cancers, or innovation in medical technology, this return is likely to be smaller. It will therefore be
important to avoid a one size fits all approach to allocation of resources.
Improving outcomes for the individual requires a whole system approach. Critical to this is ensuring
a smooth patient pathway where patients experience a world-class service at every point of their
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cancer journey, support from a named specialist nurse, quality information and smooth transition
between primary, secondary and community care.
The following are particular areas where improvements will lead to better outcomes for cancer
patients and across the population:
Time to diagnosis
Early detection of cancer is crucial to individual patients’ outcomes. We know that many people still
present to their GP at a late stage with their symptoms by which time their cancer is already
advanced. Addressing this requires sustained and evidence-based awareness raising campaigns
as well as population screening where there is an appropriate available test.
The CCG welcomes the announcement that the campaign to encourage earlier detection of breast,
lung and bowel cancer will begin in January. Encouraging people to present at their GP will be
hugely important if earlier diagnosis is to be achieved and so it is vital that awareness and earlier
detection of other cancers is also supported and encouraged.
The CCG supports the introduction of a one year survival indicator as a way of tracking progress on
early diagnosis and is pleased that this measurement has been included in the NHS Outcomes
Framework. However, as helpful as this measure is, to understand a full picture of whether the
patient has been diagnosed at an early enough stage for successful treatment it should be used in
conjunction with a measurement on cancer staging. The revised CRS should include as an aim the
routine collection and analysis of stage of cancer at time of diagnosis, as well as the route/s to
presentation. We also believe there would be value in exploring whether GPs could be incentivised
via the Quality and Outcomes Framework on the proportion of cancers in their practice diagnosed
at stages 1 or 2 or via audit.
Access to treatment
In order to fully exercise informed choice, patients should be supported to understand all the
different treatment options available to them - including those that are not currently approved by
NICE. Inequalities in access to treatment remain a significant issue, particularly in some cancers
where patients are denied access to treatments on the NHS that they would otherwise receive from
private providers or in another European country. Individual Treatment Funding Requests and the
Cancer Drugs Fund are two mechanisms through which patients and their clinicians can request
cancer treatments. Clinicians, and their patients, should be supported in accessing treatment
through these mechanisms.
Timely access to diagnostics and pathology should be improved to reduce delays in diagnosis.
There should be greater emphasis on diagnostics in primary care or, where this is not appropriate,
referral mechanisms for GPs to refer patients for diagnostic tests directly. Results of those tests
should quickly be made available to GPs and patients to enable informed referral into secondary
care where appropriate. The rise of stratified, or personalised, medicine diagnostic testing to inform
treatment choices will also require a pathology service that is fit for purpose.
The CCG welcomes the establishment of the Cancer Drug Fund and the interim fund. As the details
of the Cancer Drug Fund and its implementation are developed through consultation, it is crucial
that the needs of patients with rarer cancers are front of mind. Patients should also be fully
supported in accessing treatment through these mechanisms.
There is evidence that older people are less likely to receive active treatment, and to be treated
less vigorously than younger people with cancer. Mortality rates among older cancer patients
remain higher than comparable European countries and the USA, and clinical attitudes towards
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treating older patients remain an issue. Clinicians should be actively encouraged to treat patients
according to their clinical condition, not their chronological age. More work is needed on reducing
age discrimination in cancer treatment and care.
Case study: Ageism in cancer care
Dr Katrina Lavelle discovered that older women are less likely to receive a range of diagnostic tests
and treatments compared with younger patients, and that this is based on their age rather than the
type of tumour. Breast Cancer Campaign is now funding Dr Lavelle to look at whether some older
women with operable breast cancer are not being given surgical treatment because of their age
rather than choice, health or ability to benefit. This information will enable healthcare professionals
to develop measures to ensure that these women receive the most beneficial treatment to improve
their chances of survival.
The influence of deprivation on cancer survival is also known. It is vital that tackling inequalities in
access to, and outcomes delivered by, cancer services remains a priority for all the CRS initiative to
ensure greater equity at the point of diagnosis, during treatment, after treatment and at the end of
life.
Surgery cures more cancers than any other intervention. It is therefore important for health
outcomes that developments in surgical techniques continue. Less invasive and more successful
surgical techniques should be available to all patients for whom they are clinically appropriate.
Radiotherapy is another key area of cancer treatment. Up to half of all cancer patients should be
offered radiotherapy as part of their treatment. The CCG welcomes the inclusion of radiotherapy in
the 31 day diagnosis to treatment standard. Further investment in radiotherapy will be necessary to
meet demand.
Patient support
We support the drive for patients to be true partners in their care, according to the principle set out
in the NHS White Paper of ‘no decision about me, without me’. Providing patients with
personalised information about their condition, treatment options, support services available and
wider information about, for example, disability benefits, remaining in or returning to work, or the
potential impact of cancer on their relationships, can improve patients’ experience during their
cancer journey, and can improve health outcomes in the longer term. Patients should also be given
access to their summary care records, as appropriate, to assist with self management and
particularly to enable those with less common cancers to access generalist support in the
community.
Information prescriptions are a good example of how tailored information can empower patients to
become actively involved in and exercise choice over their own care. They are a mechanism for
the delivery of all the information a patient needs to feel empowered to make meaningful choices
about their care. The updated CRS should reiterate the commitment to information prescriptions
that was set out in the original CRS and ensure that feedback from the pilots is used to make them
as effective and practical as possible.
The provision of information and support is integral to a patients’ good experience of care, it can
help them to feel in control of their condition and situation, it can lead them to further sources of
support and can empower them to make decisions about their own treatment. As such, the
Government must make the publication of the information prescription implementation plan a
priority to ensure every cancer patient is given an information prescription by 2012.
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Patients should also be involved in the development of their post-treatment care plans to ensure a
focus on managing their ongoing and changing needs. This should help patients to identify and
self-manage their ongoing emotional, psychological and physical needs. Such plans should include
how, when and where follow-up should occur, and clearly defined routes for patients to access
specialist help with possible symptoms of recurrence and side effects. This will enable greater selfcare at home, without recourse to routine GP referrals or emergency admissions.
Care plans need to refer to clearly defined routes for patients to access specialist help with
symptoms and also subsequent illnesses – such as heart disease or incontinence - resulting from
the original cancer or from treatment They should also ensure that patients have the appropriate
support to help them to return to work if they so wish.
The End of Life Care Strategy, alongside the CRS, has been a driving force in improving end of life
care. Going forward, this focus should continue and be expanded to include access to 24/7 nursing
in the community for patients who choose to spend their last days at home, or in the place of their
choice. Progress towards better care at this stage in the pathway will greatly improve outcomes in
terms of patient experience. Most cancer patients would prefer to die at home, but only 24% are
able to do so. Access to 24/7 community nursing is key to helping cancer patients die at home.
We support the drive to improve the way that oncology clinicians communicate with their patients to
ensure that patients' needs are met. We would like to see continued efforts to ensure that the
advanced communication skills course is attended by all those with significant contact with cancer
patients, including surgeons. Patients tell us that if a clinician is able to address their needs and
build rapport on initial contact, this makes a tremendous difference to how well they feel supported
during their treatment.
Knowledge is power
In order for outcomes to improve, the NHS needs to know what good cancer services look like.
This must be led by relevant, timely and accurate data that is measured, analysed and used to
inform the development of improvement strategies. These data should feed into discussions
between commissioners, providers, specialist teams and patients. A focus on improving outcomes
is welcome and should be underpinned by service level agreements whereby providers are held
accountable for ensuring that patients are seen quickly and by the appropriate specialist team.
This will ensure that the move away from process targets does not reverse gains made in referral
and treatment times. Such data can also provide surrogate measures for outcome measures, for
example indications that patients have had the treatment/s that are clinically recommended to
provide the best possible chance of survival.
Although the CCG welcomes the greater availability of data, it will be important to maintain useful
resources for analysing and publishing that data, such as the National Cancer Intelligence Network
(NCIN). The NCIN should be responsible for increasing the availability of data and ensuring that
they are available in a timely manner.
There should also be a greater focus on patient experience of care and prompt development and
reporting of Patient (and where appropriate Carer) Reported Outcome Measures to inform services
at a trust level and aggregated to network level. There is a particular opportunity for engagement
with expert third sector organisations in this area.
Bringing cancer into primary care
Despite the prevalence of cancer in England, most individual GPs see only a few cases a year.
However, GPs will have increased responsibility for diagnostics and for supporting patients to make
decisions on their cancer treatment and care. In addition, GP Consortia will commission cancer
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services on behalf of their patient populations. GPs and their colleagues in primary care should
undertake significant event audits for each cancer patient they support. On-going training for GPs
should include learning about signs and symptoms of advanced cancer to support patients who
have had a primary diagnosis and who maybe worried about – and at risk of – secondary cancers
or primary recurrences.
These audits would provide opportunities to analyse the decisions made relating to that patient,
including diagnosis, referral, and support, and to identify and share learning of where care could
have been improved. Information should be shared between primary, secondary and community
teams working with the patient. For less common cancers, the interface between specialist and
local commissioners will be critical to ensuring patients are able to access a range of services to
meet their needs, delivered in the community and at home where possible.
2. What opportunities are there for delivering efficiencies or saving money in cancer care?
It is important that, where possible, services become more efficient and less costly to the NHS,
recognising that areas of high up-front costs can lead savings in other areas e.g. fewer bed days,
reduced side effects, fewer surgical interventions etc. Below are opportunities identified by Cancer
Campaigning Group Members where cancer services can operate more efficiently and costeffectively:
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Sharing good practice is crucial for reducing variation in quality of cancer services between
providers. This should be supported by cancer networks and should also form part of
negotiations between commissioners and providers
Savings at provider or individual team level must be supported by efficient commissioning.
Cancer services should be commissioned at an appropriate level (supported by accurate and
appropriate data) to avoid duplication
Earlier diagnosis and closer monitoring of cancer patients during and after treatment can reduce
emergency admissions, thus reducing costs in acute care and longer bed stays. Cancer should
not be a reason for emergency admission to secondary care. This is particularly relevant to
some cancers which have a high proportion of diagnoses as emergency admissions e.g. lung
cancer
Recent research has shown that flexible sigmoidoscopy (or ‘flexi-scope’) can prevent a third of
bowel cancers and reduce deaths from bowel cancer by up to half. As well as the potential to
save lives, incorporating the flexi-scope test into a national bowel cancer screening programme
would result in long-term cost savings due to the reduced costs of bowel cancer diagnosis,
treatment and follow-up years later. We strongly recommend the introduction of the flexi-scope
test into a national screening programme for bowel cancer. 1
Radiotherapy is a very cost effective cancer treatment. Radiotherapy techniques such as
intensity modulated radiotherapy and image guided radiotherapy may bring cost savings by
reducing the long term side effects associated with conventional radiotherapy. SMART trials are
not yet finished but are showing promising results and will have the potential to reduce costs.
Developments in this area should continue to be monitored
Advances in cancer drugs have led to wider efficiency savings. For example some
chemotherapy can now be delivered as an outpatient, or even at home (in tablet form) thus
reducing the need for costly inpatient stays
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Atkin et al (2010) Once-only flexible sigmoidoscopy screening in prevention of colorectal cancer: a multicentre randomised controlled trial Lancet; 375:
1624-33; Tappenden et al (2007) Option appraisal of population-based colorectal cancer screening programmes in England Gut 56: 677-684.
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The latest surgical techniques and practices, e.g. concurrent breast reconstruction should
become more widespread. Less invasive and more successful surgical techniques should be
available to all patients for whom they are clinically appropriate
The enhanced recovery programme has helped reduce the number of days patients spend in
hospital, speeding recovery and helping patients to self-manage treatment and its potential
side-effects
Currently, cancer patients finishing treatment will enter the “follow-up” system which is costly
and often ineffective. Not only does it not support people living with and after cancer to
understand and manage the consequences of their illness and treatment, it also often fails to
spot reoccurrence. Around 60-70% of cancer survivors could be better supported through selfmanagement rather than the current ‘follow-up’ model. Post-treatment assessments from an
appropriately trained professional, such as a specialist doctor or nurse, would help patients to
identify likely ongoing needs. For the majority of cancer patients, care plans allow them to
manage their own condition effectively improving the quality of their lives and reducing
unnecessary illness escalation. By taking a new approach to aftercare resources can be saved
and redirected to towards those cancer patients most in need of health and social care services
when initial treatment has ended
Clinical Nurse Specialists (CNSs) in cancer are the main point of contact for patients from
diagnosis through to treatment and beyond and have key roles to play in increasing patient
safety, improving quality of care, and enhancing patient experience. CNSs are at the forefront
of reducing emergency admissions and helping patients to self-manage. In addition, many
CNSs are advanced practitioners and take on roles that would historically have been done by
their medical colleagues including simple diagnostics, prescribing, and delivering
chemotherapy. This helps to reduce costs within providers and increases the time other
clinicians are available to see more patients We are particularly keen to ensure that patients
with advanced cancers have their care coordinated by a CNS, as there is evidence that this is
currently a gap.
Multi-disciplinary teams (MDTs) have been shown to improve outcomes for patients and
increase efficiency within services. MDTs need to be established for all cancer types and
throughout the country – the optimum number and way of working should be assessed and
applied e.g. virtual teams can reduce lost productivity among MDT members travelling to attend
meetings
The value of play therapists in working with younger children undergoing radiotherapy is well
recognised, however, not all paediatric Principal Treatment Centres are able to make use of this
resource which has obvious cost benefits in terms of avoiding the need for costly anaesthetist
appointments
The think tank, Policy Exchange calculates the total loss in productivity of cancer survivors
unable to return to paid work to be £5.3billion. There is also strong evidence that unemployment
is generally harmful to health. It can contribute to poorer general and mental health, and higher
hospital admission rates. For people who have experienced ill health or disability, remaining in
or returning to work can actually help promote recovery and lead to better health outcomes.
Supporting cancer patients to return to or remain in work can not only improve patient
experiences but also reduce the burden on health services of ill health related to unemployment
3. How best can quality and outcomes in cancer care be measured?
Comprehensive and meaningful clinical audit should be carried out across all cancer types. The
National Lung Cancer Audit (LUCADA) provides an example of good practice in data collection,
and is providing useful insights into variations in service performance. The National Lung Cancer
Audit should be continued and clinical audit for all individual cancers levelled up to meet the
standard of the National Lung Cancer Audit.
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Quality accounts should be developed to include relevant and directly comparable information
which will help patients to make an informed choice. Accounting for quality, a report by Health
Mandate, shows that development of quality accounts has been mixed. The report suggests that
the Department of Health may wish to develop templates for common conditions, such as cancer,
which account for a high level of NHS activity. These could set out which areas of care will be of
most interest to patients, as well as how providers could set about measuring them.
Data on the safety of treatment care should also be collected, and made available to the public,
patients and clinical teams.
Many of our members have identified the need for earlier diagnosis to improve outcomes for cancer
patients. The CCG is supporting the introduction of a one year cancer survival indicator to compel
hospitals and clinicians to improve early diagnosis. Consideration should also be given to the
collection of data on five year survival rates. Another means to improve earlier diagnosis will be to
record the stage of diagnosis for all cancer types to create a benchmark from which improvements
can be made.
Patient Reported Outcome Measures (PROMs) should continue to be collected to provide a
qualitative picture of the quality of cancer services. Where appropriate, carers’ experiences should
also be captured, as a proxy for patient experience but also as a measure of the care provided
holistically. The role of PROMS should be expanded to span the patient pathway, and should be
developed in conjunction with third sector organisations.
The Cancer Patient Experience Survey could provide a good basis for providing useful data on
patient experience. The Survey will need to be developed to give a full picture of outcomes relating
to patient experience. This should include a review of the questions asked in the Survey, to ensure
that it captures feedback on issues such as whether a patient’s needs have been met, and who has
been instrumental to meeting those needs. A survey of people living with and beyond cancer would
also be welcome, for similar reasons.
The establishment and roll out of the cancer peer review programme is vital in improving and
measuring quality and outcomes in cancer. The mix of self-assessment and targeted external peer
review is a good model to ensure far-reaching review, with pockets of targeted assessment. We
firmly support the intention of peer review to move towards including clinical outcomes as part of
their considerations and believe that this is an important mechanism to drive up quality and
outcomes.
Cancer patients will receive services provided not only by the NHS, but also by public health
services, social care services and the voluntary sector. It will therefore be important that quality and
outcome measures are integrated across these service areas.
Quality and outcome measures should not be restricted to diagnosis and treatment indicators. We
welcome the inclusion of domain 2 in the NHS Outcomes Framework, and its focus on ensuring
that people with long term conditions are able to attend school or work. Quality of care following
treatment of cancer will also be important. For example, an indicator could be developed to support
return to work for cancer survivors, such as “percentage of people with long-term conditions who
report that they are able to return to work”.
We know that patients who are treated in a ‘research active’ environment often experience better
outcomes. Clinical trials may also provide opportunities for patients to access newer treatments
which may improve outcomes. We believe that all patients should have the option to enter a clinical
trial, where this is appropriate.
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The importance of involvement in clinical research as a measure of quality has been recognised in
the reporting requirements for Quality Accounts. It would also be appropriate to acknowledge this in
the NHS Outcomes Framework. These measures should not only record absolute numbers of
patients in trials, but the number of trials being led by a Trust and the proportion of eligible patients
being entered into trials.
4. What further action is required to improve patients’ experience of treatment and care?
The CCG is pleased that the Department of Health has acknowledged the importance of patient
experience as vital element of the NHS Outcomes Framework and we agree that innovative patient
feedback mechanisms can drive improvements. We also believe there is a role for NICE quality
standards to play in improving patient experience; these standards should cover the full range of
needs of people affected by cancer and cover the whole patient pathway, from diagnosis to end of
life. However, there is some concern that the development of the full suite of quality standards will
take until 2015 and that this may result in disadvantage to lower profile diseases. The review of the
CRS should consider how interim quality standards will be developed to bridge the gap before the
final quality standards are published by NICE, and how NICE can be supported to deliver these
additional but essential projects.
A human rights based approach should be embedded across all cancer services, with the principles
of dignity and respect at its heart. The CCG supports the work being done as part of the National
Cancer Equality Initiative to develop guidance for clinicians, commissioners and regulators to
ensure every cancer patient is treated with dignity and respect throughout their cancer journey.
Coping with a cancer diagnosis can be a very difficult time for patients. It is therefore vital that as
much as possible is done to support patients through their care and treatment pathway. Greater
thought needs to be given to the processes around access to cancer treatments. The stress of
being unsure as to whether you will get a particular treatment, or of going through an exceptional
case panel, can put a huge strain on patients and their carers. Processes for access to treatment
should be developed with patient experience front of mind.
Improving access to information will be crucial to improving patients’ experience of treatment and
care. We support the new Government’s focus on ‘no decision about me, without me’. Increased
access to information must be combined with support in understanding and using that information
to make informed choices about care.
Where possible, care should be provided in the most appropriate setting for the patient. This may
include providing diagnostics in primary care, chemotherapy in the community or end of life care
services in the place of choice whether it be home, hospice or elsewhere. Where patients are
being treated in acute care, appropriate attention should be taken to ensure that the physical
environment is conducive to recovery. Patients should also be provided with support to manage
their own symptoms (such as nausea, fatigue, breathlessness) to prevent unnecessary admissions
to hospital including community or online interventions or activity programmes.
Continuity of care is highly important to a patient’s experience of their treatment and care. Cancer
nurse specialists can provide this continuity care as part of a multi disciplinary team, making sure
that the cancer patient is supported through their diagnosis, treatment and care. We would
welcome the value to patients of CNSs being recognised as part of hospitals’ reporting
requirements under the new quality accounts.
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By 2030 there will be four million people in the UK living with a cancer diagnosis. The CCG believes
that the Government must ensure that care and support is available to support all patients living
with and after cancer. This may include wig or prosthesis services, coping with the long-term effects
of cancer and its treatment or a focus on recovery and wellness after treatment. This approach
should consider all groups living with and after cancer, including children and young people, for
whom a focus on life post-care will be particularly important.
The CCG would also like to see a stronger drive towards implementing standards of psychosocial
care for cancer patients. This requires investment in training of oncology staff so that they feel
confident about talking to patients about their overall health/state and ensuring there are adequate
psychological services for patients at highest risk to be referred to. There is evidence from other
countries that certain groups will be more at risk of suffering from stress, depression and anxiety as
a result of a cancer diagnosis and more should be done to educate clinicians about these groups.
This could save considerable resources over time as services are better targeted to those at risk
and long term mental health problems are avoided.
When considering experience of treatment and care it is important to consider not only patients, but
also their carers, partners, families and friends. These groups should also be offered information
and support to help them to deal with the emotional and personal challenges that a loved one’s
diagnosis brings. This is something the voluntary sector does well and we would like to see more
established routes for referrals for cancer patients to voluntary sector services.
5. Are you aware of examples of good practice in cancer services delivery which could be
replicated?
Many of the Cancer Campaigning Group members are involved in projects aimed at improving
good practice in cancer service delivery. Here we set a number of case studies, at different stages
in the cancer pathway.
Breast Cancer Care: Train the Trainer
Breast Cancer Care’s Train the Trainer courses encourage the early detection and presentation of
breast cancer in communities where there is low uptake of breast cancer screening services, and
trends of later presentation of the disease.
The courses offer tailored training, education and resources to key health, community and
education professionals who then deliver breast health awareness talks within their own
communities. This enables more people to be reached with crucial health information about breast
health and breast cancer, particularly those groups who are not reached through usual health
information channels. These include women from some black and minority ethnic communities and
older women, especially those living in socially disadvantaged areas. In 2009/10, 263 people were
trained, who then went on to reach 9228 women in these more marginalised groups.
For 10/11 the programme has so far trained 65 people who have reached over 3000 people with
the Breast Awareness message.
Breast Cancer Campaign: Personalised treatments
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The move towards greater personalisation of services and treatment will increasingly become a
reality over the next five years. In breast cancer, because research is leading to better
understanding of the condition, the development of new treatments and improvements in the use of
current treatments targeted specifically at the individual’s cancer is becoming a real possibility.
Breast Cancer Campaign is funding a number of projects in this area, including looking at:
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Your genes and your response to treatment
While there are many effective breast cancer treatments available, around a third of people will
develop resistance to these treatments and see their breast cancer worsen or return. Breast
Cancer Campaign has invested heavily in understanding the mechanism behind this resistance,
research that will help clinicians move away from a ‘one size fits all approach’ towards a more
personalised treatment regime.
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Your genes and your response to hormone treatment: Dr Tracy Robson at Queen’s
University Belfast has discovered a gene, FKBPL, which can identify patients that will
respond well to tamoxifen. Dr Robson hopes to harness the FKBPL gene to develop a
test to better predict the outcome of treatment with tamoxifen. This will mean the most
effective therapy for the tumour type is given early on in the disease.
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Your BRCA1 gene and your response to chemotherapy: Breast Cancer Campaign
funded Professor Paul Harkin and Dr Jennifer Quinn at Queen’s University, Belfast,
have discovered that patients who have a working form of BRCA1 gene are susceptible
to antimicrotubule chemotherapies such as etoposide or bleomycin but resistant to
DNA-damaging chemotherapies such as paclitaxel and vinorelbine. The reverse is also
true for people with BRCA1 mutations. Knowing a person’s BRCA1 status in the future
may help guide clinicians to select the most appropriate chemotherapy treatment.
Predicting long term side effects of treatment
Radiotherapy is commonly used to treat those patients who have had breast conservation
surgery or mastectomy. When the breast tumour is on the left side, a small part of the heart is
within the treatment range which can lead to heart disease. Funded by Breast Cancer
Campaign, Dr Paul Symonds, University of Leicester, discovered that patients who developed
telangiectasia (red dilated blood vessels) after radiotherapy to the left side of the chest are at
greater risk of developing coronary heart disease (often up to a decade later. Telangiectasia
could therefore be used as marker to predict an individual’s risk of heart disease after
radiotherapy, allowing careful monitoring by clinicians.
Teenage Cancer Trust: Specialist care and support for teenagers and young adults with
cancer
Teenage Cancer Trust works closely with health managers, commissioning groups and local
Primary Care Trusts to plan the development and location of Teenage Cancer Trust units. A
Teenage Cancer Trust unit brings teenagers with cancer together, so they can support each other
and be treated by teenage cancer specialists in an environment tailored to meet their needs.
Grouping the care of teenagers and young adults with cancer in this way is a more cost-effective
and efficient way to undertake commissioning of services and offers the best chance of consistent,
high standards of care. Specialist centres may require considerable initial resourcing but will
provide longer term economies. For example, NICE identifies the importance of psychological and
social support for this age group as being a priority and treating them under a skilled
multidisciplinary team in a centre of excellence will be more cost effective and than trying to deliver
this level of support in dispersed services.
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Multidisciplinary team meetings in Teenage Cancer Trust units include discussion of patients from
other hospitals in the area to ensure that expertise and support can be appropriately provided to
teenagers and young adults with cancer regardless of where they’re being treated and cared for.
While all patients may not be treated directly in such units, the centres can provide expertise,
information and support to other healthcare providers to ensure all patients have access to the best
care possible.
Survivorship projects: Southmead Hospital, North Bristol – Survivorship meeting and
The Beatson West of Scotland Cancer Centre, Glasgow – Moving Forward self help course
Graeme Butters, Haematology clinical nurse specialist at Southmead Hospital ran a pilot
survivorship meeting in March this year for patients who had recently finished treatment (with
curative intent) for aggressive lymphomas. Presentations were delivered on a range of topics
including: the possible late effects of treatment, returning to work and the support available from
third sector organisations with regard to the long-term psycho-social impact of lymphoma.
Seventeen patients attended the event held at the hospital and it was positively appraised by all in
attendance.
Natalie Singer, Haematology clinical nurse specialist at the Beatson West of Scotland Cancer
Centre has put together a self-help course for patients who are getting to the end or who have
finished treatment. The course aims to address the anxieties that patients may have with returning
to ‘normal’ life. Sessions include relaxation techniques, eating well and benefits. The sixth course is
currently running and a seventh is planned. All patients who have completed the course have given
positive feedback.
Marie Curie Delivering Choice Programme
The Marie Curie Delivering Choice Programme is a pioneering approach to redesigning services
which supports people’s individual preferences for how and where they want to be cared for at the
end of their life. Evidence demonstrates that given the choice, most people wish to die in their
place of residence. For many this means dying at home, surrounded by their families and carers.
Working with the NHS, social care, the voluntary sector, community groups and the independent
sector the Delivering Choice Programme helps facilitate this wish by providing two key functions:


A community-based rapid response ream (RRT) that makes emergency and planned visits to
patients in their homes during twilight (3.00pm -10.30pm) and out-of-hours periods (10.00pm –
7.00am). The team also provides psychological support and guidance to patients and their
carers over the telephone.
Discharge community link nurses (DCLNs), who are based in the acute sector and facilitate the
speedy discharge of palliative care patients with complex needs to their preferred place of
care.
Since 2004 the Delivering Choice Programme has established a number of projects across the UK,
which as they complete, are independently assessed. The King’s Fund evaluation of the
Lincolnshire project, published in 2008, found that, of those patients on the Delivering Choice
Programme, twice as many were able to die at home as compared with those patients who did not
use the programme’s services. The evaluation also revealed no difference in overall costs of care,
showing that the increased community support provided by the programme’s initiatives was offset
by reductions in hospital usage, number of GP contacts, 999 ambulance journeys and out-of-hours
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visits.
In partnership with others, the Delivering Choice Programme is working to support 19% of the
population in England to receive coordinated, responsive high quality palliative and end of life care,
how and where people want it.
Further detailed information on evaluations and research findings can be found at
www.mariecurie.org.uk/deliveringchoice
6. What developments in prevention, screening, diagnosis, treatment or after care can be
expected which will impact upon the way in which cancer services need to be
commissioned or delivered?
Cancer services are constantly developing and improving. It is therefore important that there is
horizon-scanning capability as well as flexibility built into commissioning and delivery systems to
ensure that the NHS, public health service and social care are able to identify and adapt to and
adopt new developments. The CCG believes that there are a number of new developments which
will have an impact on commissioning, provision and delivery which are outlined below:
Prevention
The introduction of a separate public health service will have implications on the commissioning of
interventions to try to prevent cancer and it will be critical that funds for the prevention of cancer are
included inside the public health funding ring-fence. Activities such as continued tobacco control
measures, provision of smoking cessation services and restrictions on access to sun beds for
younger people would help to prevent some cancers. While smoking rates are decreasing, other
factors that are known to contribute to the risk of cancer are on the increase, including obesity,
lowering levels of physical activity and alcohol use.
Tobacco control
Reductions in smoking have been essential to reducing cancer deaths but more than a quarter are
still caused by tobacco use. To continue the progress of recent decades comprehensive action is
necessary. The forthcoming Public Health Strategy will need to pursue a comprehensive set of
measures with tobacco a core element of the public health white paper.
These will need to include:
 Continued action against tobacco marketing by removing displays of cigarettes in shops and
a thorough examination of the case for generic packaging
 Increases in price and further progress against smuggling
 Continued investment in stop smoking services and marketing
 Reductions in the availability of tobacco to children
While the public health service and local government will take on a number of major roles in the
delivery of tobacco control, NHS services are still essential in brief interventions and referral to
services. A number of areas of the Outcomes Framework are affected by smoking and the NHS will
need to work closely with the Public Health Service to ensure that services are commissioned to
sufficient levels. These include, but are not limited to:
 A number of conditions covered by mortality amenable to healthcare.
 Inequalities in mortality among some groups, such as those with serious and continuing
mental health problems.
 Adults able to work, be physically active or to live independently.
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Screening
NHS screening programmes have played an important role in the early diagnosis and detection of
cancers. Existing screening programmes, however, are not static and new technologies are
becoming available to improve screening. One example is digital mammography for breast
screening which is planned for roll out by 2012. There should be guidelines in place to ensure that
there is uptake of this technology. Flexiscope for bowel screening is a new technology which will
assist in both reducing incidence of this cancer and in improving rates of early, and accurate,
diagnosis. These technologies are not routinely available throughout the country and
commissioners and providers should strive to offer these new screening technologies routinely.
Commissioners and providers should all be mindful of the importance and impact which new
technologies on screening and adopt these as soon as possible.
Additionally, as we learn more about cancer and methods of detection, screening techniques for
different types of cancers are being developed. For example, a major ovarian cancer screening
trial is currently underway and there is the potential for screening programmes for other types of
cancers to be researched and rolled-out. Commissioners and providers should be aware of
research into new screening programmes so that they are ready to implement these at the earliest
possible opportunity.
For prostate cancer, access to the prostate specific antigen (PSA) test should be approached with
the principle of informed choice. Screening with the PSA test is currently not recommended, but the
concept of informed choice is important. All men over 50, and younger men at high risk, should
know about the test, be able to access balanced information about its pros and cons, and be able
to take the test if they wish. A new approach to informed choice about screening and diagnosis, is
needed and PSA testing should be one opportunity to develop this approach.
Diagnosis
Awareness programmes about the signs and symptoms of cancer are important for both clinicians
and members of the public in improving the timely diagnosis of cancer. As awareness programmes
may be considered a public health intervention, it will be important that funding for these schemes
is included inside the public health ring-fence and that commissioners in local authorities are
confident and competent in commissioning and evaluating them.
Every GP Consortium should consider developing a network of GPs that have a special interest in
cancer, and who could be available to advise and educate other GPs, as well as acting as a point
of contact for cancer organisations and Principle Treatment Centres
Pathology services have a critical, but often overlooked, role to play in delivering high quality
cancer services. A move towards ensuring that every cancer patient has histopathology
confirmation of their cancer could lead to improved cancer treatment, patient experience and
ultimately outcomes. Commissioners will therefore need to commission more efficient and effective
pathology services for cancer diagnosis. This may have an initial cost implication, but will lead to
down the line savings in making treatment more targeted and will improve the quality of services
and patient outcomes. Providers will need to ensure that there is sufficient capacity in pathology to
deal with an increased workload.
Finally, patients should have timely access to the latest diagnostic techniques and technologies.
For example, flexiscope is a new technology which is improving the diagnosis of bowel cancer. If
more patients were able to access these new and more accurate techniques then diagnosis will be
improved. Commissioners should be investing in new diagnostic techniques to ensure that all
patients, regardless of where they live, are able to access diagnosis by new technologies and
providers will need to consider whether they are able to provide these services.
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Treatment
Treatments for cancer are developing at great speed, with new surgical, radiological and
pharmaceutical technologies being developed and becoming available for use within the NHS. This
poses both a challenge and an opportunity for both providers and commissioners in a number of
areas. For example:
 More widespread use of biomarkers and targeted treatments have the potential to significantly
impact on the way in which cancer services will need to be delivered and how best they can be
commissioned. Investment and development of these new types of treatments will ensure that
more cancer patients receive treatment which is more likely to be effective for them, reducing
wastage of treatment and, importantly, meaning that patients are less likely to be subject to
difficult treatments which are not going to benefit them, and therefore unnecessary side effects.
Investment in pathology services will be necessary to ensure that all patients can be tested.
 We know that many radiotherapy technologies which are widely in use across Europe and the
US are not routinely available for patients in England. This will need to be addressed if we are to
have a chance to introduce the newer technologies as they emerge. Plans for the development
of proton therapy facilities in the UK will also need to be factored in to future planning.
 The CCG supports the development of proton beam therapy and other advances in radiotherapy
in the UK for all patients. The national referral process for patients to go abroad for this therapy
whilst its being developed in the UK is welcome. Work on the development of proton beam
therapy services in this country should continue, and it will be important for the new NHS
commissioning board to support this process and provide guidance to commissioners.
 New medical technologies are revolutionising the treatment of some cancer and changing what
used to be complex surgery with long recovery times, into simpler, less invasive surgery with
quicker recovery times, fewer side-effects and a better patient experience.
 As the types of treatment delivered to treat cancer change, so will the settings in which these
treatments can be delivered. Commissioners should capitalise upon the potential of
chemotherapy to be delivered in the community. As we move towards this, services will need to
be organised differently to support such delivery.
 The establishment of the interim Cancer Drugs Fund will impact on the way that treatments are
funded, with monies being made available to fund cancer treatments not routinely available on
the NHS from the regional (SHA) level. It will be essential that commissioners are able to
access this money and that a clear and transparent process is put in place so that patients
expectations are managed around the impact of the Fund on making more cancer treatments
available.
As cancer treatments develop, so must structures for commissioning and provision. It is essential
that there is sufficient capacity in the right setting to ensure that all those patients who could benefit
from new treatments are able to access them. Commissioners will need to commission a plurality
of services to ensure that patients are able to access the services that they require and to improve
patient experience. Providers will need to ensure that there are appropriate services and sufficient
capacity in place to give patients choice in the setting and type of treatment they wish to receive as
well as high quality information to support their choice.
After care
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As some types of cancer change from being terminal diseases to long term conditions, after care is
increasingly important for the growing numbers of people living following treatment for cancer. A
good example of how after care is changing is through the development and roll out the enhanced
recovery programme for elective cancer surgery, including the 23 hour admission for breast cancer
surgery. This exciting programme will improve the experience and the outcomes of patients and
could save a considerable number of inpatient bed days which will mean that providers need to
reconsider the configuration of services. Although the enhanced recovery programme will require
investment from commissioners – including ensuring skilled nursing support is available in the
community - it is likely that inpatient beds could be decommissioned as a result of this.
The National Cancer Survivorship Initiative is currently piloting exciting new approaches to
aftercare based on the principles of post-treatment assessments and care plans. These pilots are
working to help patients identify their ongoing emotional, physical and psychological needs. Early
findings are demonstrating the benefits to people affected by cancer of the provision of posttreatment care plans as a mechanism for self-managed care. It is important that as services and
care are developed for people living with and beyond cancer, related survivorship outcomes are
included in the outcomes framework to ensure that the needs of this group of patients are not
overlooked.
7. Looking at the plans set out in the White Paper and associated consultation documents
(to be published shortly), what are the issues and opportunities for delivering cancer
services and improved outcomes?
The Cancer Plan and the subsequent CRS have put cancer at the forefront of improving services
and outcomes for patients. The consultations associated with the NHS White Paper recommend
widespread changes to health structures in England. These proposals present a number of
opportunities and challenges in cancer, including:
 Commissioning – cancer services will be commissioned at all levels of the commissioning
structure. This could be both an opportunity and a challenge. We support the intention of
moving clinical decision-making as close to the patient as possible through GP commissioning
consortia. However it will not be appropriate to commission all cancer services at this level, as
GP practices will not have sufficient patient numbers with certain, rarer types of cancers to make
effective and efficient commissioning decisions. It is critical that new structures for national and
regional commissioning take advantage of already existing expertise in this area, including in
Specialised Commissioning Groups and cancer networks.
It will be important that services commissioned at an NHS Board level and those commissioned
by GP consortia are fully joined up, and that the service provided to patients is seamless.
The use of cancer networks will be important in ensuring that there is continuity of
commissioning at the different levels which will exist and that these levels are joined up and
don’t cut across each other. Additionally for cancer networks to be as effective as possible they
will need to be linked to local authorities to ensure that cancer services in the NHS, public health
service and the social care service are joined up. Cancer networks are used as a best practice
model in other disease areas, such as diabetes, and their specialised expertise should not be
lost.
A recent report by Health Mandate, Commissioning in the new world, has demonstrated the link
between commissioner prioritisation and outcome improvement. The Department of Health
should ensure that the commissioning outcomes framework enables commissioners to
effectively identify and prioritise the issues which matter most in their health economy.
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 National strategies – we are pleased that the Secretary of State will retain the responsibility for
oversight of national strategies. The Cancer Plan and the CRS have been integral in the
improvement of cancer services and outcomes and we believe retaining this national framework
structure going forward will continue to drive up service quality, patient experience and clinical
outcomes.
 The Information Strategy – the introduction of an Information Strategy presents a good
opportunity for important data to be collected and presented in a way which is meaningful for
patients, clinicians and commissioners. Without appropriate data collection and a baseline of
how we are performing against measures now, we cannot expect to improve outcomes and be
able to identify areas where attention should be focussed. The local data included in the Cancer
Reform Strategy: Achieving local implementation - second annual report (such as one year
survival and participation in national clinical audits) is a good start in terms of benchmarking
services and outcomes. Ensuring that appropriate data is collected, at the most granular level
possible, and analysed and published in meaningful, accessible and timely way should assist in
improving outcomes and enabling informed patient choice
The Information Strategy should also be used as impetus for ensuring that patients receive
personalised information about their condition, practical matters and support services that are
available to them. Information prescriptions are the ideal mechanism for delivery both data
about performance and information about the more personal needs of cancer patients.
 NHS Outcomes Framework – the move from process targets to outcomes-focussed
measurement will incentivise providers and clinicians to strive for the best possible outcomes.
Extending and standardising quality accounts across all providers of services will reinforce local
performance, create some consistency in how quality is measured and make it easier for
patients to make an informed decision about where they would like to be treated at various
points in their cancer journey. Where targets are clinically led they should be maintained
alongside the NHS Outcomes Framework.
8. As we develop work to improve cancer outcomes, how can we make sure that we
continue to try and tackle inequalities in cancer care?
As we move towards a more locally commissioned health service, variations across the country are
likely to increase. Some variations are to be expected, but more focus needs to be put on the
elements of the system where there is unfairness for patients. As outlined in the National Cancer
Equality Initiative (NCEI) report, inequalities persist in areas such as age, gender, sexuality, and
ethnicity. Alongside those equality strands recognised by law, there are also significant
geographical variations where inequities are present. Examples of how these inequalities can be
reduced would include: ensuring that every cancer patient has access to a cancer nurse specialist;
making information for patients available in a variety of appropriate formats; ensuring availability of
services for end of life care; ensuring that patients are able to access the treatments that their
clinician recommends and ensuring that services are set up to meet the needs of different groups.
For example, extended opening hours and "drop-in" sessions may be more accessible to men and
people from lower socioeconomic background2.
Increasing the use of PROMS as a means of measuring outcomes in the NHS will be one way to
reduce the occurrence of regional variations. Patient groups should be engaged in the process of
2
National Cancer Equality Initiative, Reducing cancer inequality: evidence, progress and making it happen,
March 2010
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developing further PROMS, particularly those from communities who are traditionally consideed
"hard to reach".
We would also welcome further Department of Health support for the NCEI’s recommendations in
the CRS refresh. In particular, the work being done to pilot approaches to formally assessing frailty
in older people when considering treatment options has much to offer the battle against health
inequalities, as does the project to create guidance for clinicians, commissioners and regulators to
ensure every cancer patient is treated with dignity and respect throughout their cancer journey.
Under the new NHS structures and systems it will be important that robust regulation is put in place
to ensure that there is competition in the market and that the move towards localism doesn’t
exacerbate the postcode lottery of cancer services.
Transparency and data collection will be crucial in tackling inequalities. The National Cancer
Intelligence Network (NCIN) equalities portal should be extended as more datasets become
available to enable scrutiny of variations and potential inequalities across the country. Outcomes
measures could also be developed specifically to target inequalities, to incentivise both
commissioners and providers to make progress in this area. Performance should also be
benchmarked against comparable European countries so that we can identify the areas where
performance needs to be improved. We are calling for cancer services to be equivalent to the best
in Europe, everywhere in England and tackling inequalities will be a critical element in turning this
aspiration into a reality.
For further information
We are grateful to have had the opportunity to feed into this consultation. Should you require any
further information from the Cancer Campaigning Group, please contact our Secretariat on 020
3128 8133 or [email protected].
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