Policy responses and statements

Name of organisation:

The Scottish Government

Name of policy document:

Better Cancer Care - A Discussion

Deadline for response:

2 May 2008

Background: A national discussion has been launched on future priorities for cancer care in Scotland. This will give patients, carers, healthcare professionals and the public the opportunity to reflect on the progress made in recent years, acknowledge some of the challenges that remain and help the Scottish Government to focus activity on improving services. 'Better Cancer Care: A Discussion', published on February 12, 2008, sets out some of the key issues and poses some broad questions about future change.

This discussion document sets out a range of broad action areas that the Scottish Government believes will need to be addressed if heathcare services are to keep pace with changes in the level and type of demand across Scotland. It includes questions about specific issues and an open invitation to provide views and ideas about any aspect of cancer care. The detailed updated strategy will be published in summer 2008. Issues to consider include prevention, screening, diagnosis and treatment, palliative care, assuring quality of care, putting patients at the centre, and delivery,

COMMENTS ON
THE SCOTTISH GOVERNMENT
BETTER CANCER CARE - A DISCUSSION

The Royal College of Physicians of Edinburgh is pleased to respond to the Scottish Government on the discussion paper on Better Cancer Care.

In general, this document provides useful statistics about the incidence of cancer in Scotland and the change in survival between the 1980s and the early part of the 21st century.  The contents are very inclusive of everything from prevention and screening to palliative care.  It is clearly essential that Scotland as a nation treats cancer care in a holistic sense and we are sure that the Government is informed of the enormous challenges that lie ahead.  The incidence of cancer is increasing, the population is getting older and therefore there are more years for cancer to be diagnosed.  Against that, we have set excellent standards of public health, particularly concerning tobacco and recently alcohol and obesity.  The challenge for Government is that whilst new money is needed appropriately for public health initiatives such as the introduction of vaccinations for cervical cancer and the Scottish Bowel Cancer Screening programmes, the fact remains that it will be some 10 years or more before such interventions reduce the need for current diagnosis and treatment.  The latter is becoming very challenging with the development of a truly staggering number of anticancer drugs.

The improvements in cancer care up to 2004 appear to be attributed to the ban on smoking (2005), screening expansion, and updated guidelines for patient referral, amongst others.  Most of these measures have been introduced too recently to have had any effect on the cancer survival figures given.

SECTION 2: PREVENTION

Opportunities  

Make full use of run up to the Commonwealth Games in Scotland to promote benefits of exercise and healthy lifestyle. 

Use celebrities to promote healthy lifestyles.

Tackling alcohol misuse would be especially welcome and would improve the health of our nation.  It is difficult to know if Government action alone can change the self-destructive culture, but the efforts should continue.

Public Awareness and Access  

Make healthy food attractive and cheaper.  Encourage the manufacture of healthy convenience food.  Efforts have been made in primary care recently to invite patients into surgeries to encourage healthier lifestyles, and this form of intervention is expensive.  It would be worth spending money on good quality research and audit to (a) establish whether such initiatives have any effect on the health of populations and (b) establish what effect the current programmes are having.  There seems little point in spending a lot of money if the methods have not been proven to work and are not subject to careful evaluation.

Opportunities for collaboration with the third sector

Use the media to promote the agenda.

SECTION 3: SCREENING

Approach to screening; future programmes

Needs to be evidence based, properly resourced and funded to take account of additional workload that is generated and its impact on existing services.  Take part in trials if resourced, particularly of lung cancer screening.  Research is crucial to establish what new screening services, if any, should be introduced.

Raising awareness and participation

Consider use of media - local radio, advertisements, press releases and case stories.  Use alternative methods to recruit people - text messages and phone calls etc.

Role of cancer genetics

Raise profile of what cancer genetics does.  Pro-active recruitment of cancer geneticists.  Pro- active investment in genetics may allow use of genetics to save money in terms of screening, targeting those who would benefit most from prevention, and also using treatments to maximum economic benefit and thereby altering cost benefit equation to allow use of drugs not currently funded by the SMC.  (For example, K-ras status in colorectal cancer may predict benefit from panitumumab, predictive and prognostic factors in breast cancer have been identified that can influence treatment choice, and tests can now be performed quickly enough to provide results in a clinically meaningful timescale).

SECTION 4: DIAGNOSIS AND TREATMENT

Improvements in diagnostic and treatment services

Unfortunately, investment is required to maintain state of the art technology and the workforce to provide this.  Cancer pathway planning and protocols have already made a significant impact on best use of resources – lean modelling has improved efficiency and speed of delivery.  Cancer network working has ensured that services are regional - now need national working.  We may need to re-think the directions of travel for some patients and geographical configuration of services within Scotland needs to be considered.

Surgical skills

Audit and sharing of data in cancer networks has been a driver to maintain standards.  Recognition and reward of innovation need to be implemented and research fostered.  May also need to consider future centralisation of some very specialised services to maintain skills and outcomes.  The impact of the EWTD needs to be considered on surgical skills training.

Safe and effective radiotherapy, chemotherapy and drug treatments

Investment in and retention of key support staff.  There is an obvious conflict with regard to the aspirations for chemotherapy in the document.  It is stated that standards must be stringent and in accord with current HDL documents, but also that chemotherapy should be administered by local doctors and closer to the patient’s home.  Training staff to deliver chemotherapy and deal with complications takes time.  If doctors travel from a cancer centre to peripheral clinics, then time “on the road” is time lost from seeing and treating patients.  Currently, the only way to increase more centres for the provision of chemotherapy would be to spend money to employ and train more staff.  Economics of scale would also be lost by devolving such care.  If the money is not spent and the services are devolved anyway, the services are likely to become less safe.  Critical and near-miss incident reporting culture can address issues rapidly and prevent actual errors.  Patients are happy to travel for high quality care, and this needs to be borne in mind.

Cancer Genetics

See section 3.

Balance local access with specialist services

Flexibility needs to be built in to harness local enthusiasm and skills and, those who “shout” for local delivery of services need to be challenged to put their words into action in terms of supporting repatriation of services.  Consider more use of telemedicine to support outreach services.  Consider what needs the services of a specialist and what can be devolved to local staff who can work with protocols and access to special advice.  Consider use of non-medical staff to provide some cancer services eg clinical nurse specialists etc.

SECTION 5: PALLIATIVE CARE

This would be improved by ensuring better community support for patients with incurable cancer.  Currently too many end up by being admitted to acute wards and get unnecessary investigations when they should be managed at home or in a hospice.  The fragmentation of out-of-hours care over the last few years appears to have made the situation worse, and patients are less likely to see a doctor who “knows their case”.

Definitions

There should be greater clarity on what is meant by ‘palliative care’ and ‘survivorship’.

Sharing Excellence

Need encouragement to share best practice at a national level - education, CPD and palliative care networking.  Encourage use of Gold Standards Framework.  Audit palliative care services.  Encourage ongoing and future research.  May need to think about core standards for palliative care similar to the CSBS ones for cancer to help drive up standards.

Key Issues

Culture in terms of place of death

Home versus hospital or hospice.

Culture in terms of meaning of involvement of palliative care

Some patients and their families still equate palliative care with imminent death, rather than with dealing with a specific symptom or living with incurable cancer.  We need to emphasise that many patients admitted to a hospice go home after rehabilitation to a place more conducive to this than a busy hospital ward. 

Availability of family to provide care and support

This depends on the family dynamics and size. 

Access and confidence in support

Appropriate help and support need to be available, both in normal working hours and out of hours.

Balancing local access and expertise

Aim to use protocols and have networks to advice and expertise.  Use of guidelines such as the Gold Standards Framework and the Liverpool care of the dying pathway may reduce the need for specialist input by increasing confidence and knowledge.  Accept that patients may need to travel for specialist palliative care interventions if required.

Funding

There needs to be a debate regarding funding for hospice, home care and support outwith the NHS.

SECTION 6: ASSURING QUALITY OF CARE

Multi-disciplinary teams

MDTs have had many positive effects on cancer care.  All these teams, however, work differently and there is no one formula that can be applied to make all MDTs the same.  There is no guarantee that because a patient is discussed at an MDT meeting that the subsequent care given will be good.  Palliative treatment decisions are particularly difficult to make in such meetings, and it is incorrect to say that all new patients are always discussed at such meetings.  Discussing a patient with less than full information can lead to the wrong clinical plans being made, and it is vital that decisions on patients’ final care is made by an appropriate clinician after reviewing the patient in clinic or on the ward.

Prioritising quality assurance

Need to ensure that audit is properly funded to give high quality data, and that the desire to have information about patients being tracked through target pathways does not distract from this.

Publicly reported quality assurance programmes

Simple annual report highlighting success and challenges.

Need to review cancer audit

Data are essential, monitoring impact of changes in service to ensure that they continue to improve.  Need to invest in audit collection and analysis.  New CSBS core standards will drive need for audit data for all tumour types to ensure that all cancers are reviewed.  This will be a huge challenge for audit to ensure that information can drive changes in management for all tumour types.

Information to patients and carers

Information needs to be simple but meaningful and needs to be signed off by the staff who are responsible for these standards.

Participation in clinical trials

Support for trials culture among patients and health professionals.  Use variety of media to inform and educate patients.  Needs manpower and funding to support infrastructure.  Make regulatory processes as streamlined and efficient as possible to facilitate rapid trial set-up eg sign-off processes.  Delays in getting a trial open can significantly limit recruitment.

Opportunities to increase trial recruitment

Creative use of media organisations and charities to increase awareness and potential benefits of participation in clinic trials.

Cancer waiting times targets

Need to have more dialogue with clinicians about biologically meaningful targets to ensure that clinicians are signed up to these rather than feeling that, like the current ones, they are imposed without clinical significance.  Concern has been raised that some patients with cancer diagnosis who are referred non-urgently are suffering in terms of speed in management once diagnosed because of the pressure to make sure that urgently referred patients do not breach targets.

SECTION 7: PUTTING PATIENTS AT THE CENTRE

Increasing involvement of patients would be welcome.  It would be particularly useful to have some ways of sampling large numbers of service users, rather than relying on small numbers of more active individuals.

Improving the experience of patients with cancer

Investment in real estate, cleanliness of wards, support services such as dietetics, IT to ensure that patients are seen with all the data that is needed to fully inform a consultation and treatment decisions, and rapid communication of information so that all involved in patient care are aware of what is happening.  Need to have some way to support patients who are been treated with curative intent with perhaps prolonged courses of treatment that preclude working to avoid significant financial stress that causes them greater concern and worry.

Information

Need to think about how and when patients access information.  Also need to ensure that patients can understand the information that they receive in terms of language and simplicity.  Use of the internet to provide information should be expanded.  Gaps exist in terms of survivorship and life after cancer or living with cancer as a “chronic condition”. 

Working with the third sector to improve information

Use their contacts to explore issues and recognise that they may be able to do meaningful helpful research that cannot be carried out by the NHS in terms of feedback and identifying issues.

Self care management

Need to recognise that this will not suit all patients, but allow those who wish to do so to have the information and support to take on more responsibility for their care.  Consider adopting model of copying letters to patients.  Engage in research that will provide evidence to change practice.  Ensure that there is flexibility in the system to allow easy access when required.

Survivorship needs and patients with chronic health problems

Needs to be patient focused and evidence based.  Education of non-cancer professionals about short and long-term toxicities of treatment, and how these can be recognised and managed.  Engage in research in relative new areas of survivorship.  May need to have creative working to deal with multiplicity of chronic problems, particularly in older patients with multiple co- morbidities and engage in increasing focus on research in oncology in treating and managing older patients with cancer.  May ultimately need to train oncologist with specialist interest in medicine for the elderly.

Rehabilitation

Recognise that increasing numbers of patients are cured.  Education of non-cancer professionals about short and long-term toxicities of treatment and how these may be recognised and managed.   Expansion of rehabilitation medicine may be required.  Ensure that rights to return to work are protected.  Engage in dialogue with patients about what is needed.

Improving Integration and Continuity of Care

Better information flow is key – IT crucial. 

SECTION 8: DELIVERY

Cancer networks

Need to join up regional cancer networks to work on national level to share good practice, protocols etc to ensure that national standards and practice are as good as possible – this is already happening in some tumour types such as hepatobiliary cancers.

Lead cancer clinician role

Useful to have a doctor who can provide clinical experience and give access to government by recognising how it works and how to access it appropriately and effectively, and who can also give credibility to the output from government.  A clinician may be better able to translate government-speak into information that is meaningful and relevant to clinical staff and the public and act as a conduit of opinion.  It is also useful to have someone with an overview who can facilitate dialogue and change.

Prioritisation

IT services are changing and will continue to make a huge impact on service delivery in terms of information flows and access. 

Optimum use of resources and national working to achieve this

Engagement and debate with the public about changes and their costs.  Aim to commission services at a national level.  Avoid bringing politics into healthcare wherever possible!

E-health

Need investment in e-health and IT and recognition that excellence may not come cheap and that the cost may need to be borne by national government to ensure national commissioning.

Key performance indicators

1. Incidence
2. Mortality,
3. Length of survival
4. Access to what is regarded as best practice management – comparison with CSBS standards or against guidelines such as SIGN.

Copies of this response are available from:

Lesley Lockhart,
Royal College of Physicians of Edinburgh,
9 Queen Street,
Edinburgh,
EH2 1JQ.

Tel: 0131 225 7324 ext 608
Fax: 0131 220 3939

[2 May 2008]