WHY this is important for people in Suffolk and North East Essex
The best quality cancer treatment, care and support are essential if everyone in Suffolk and North East Essex is to start well, live well and die well.
As an Integrated Care System we will ensure that:
- People have rapid access to diagnostic services
- People have the best quality cancer treatment
- People and their carers have high quality personalized support for to love with, and after an initial diagnosis of cancer and if it returns
Achieving World-Class Cancer Outcomes: A Strategy for England 2015-2020 described a range of challenges in cancer care, including:
- Early diagnosis and poor access to treatment are significant factors in mortality rates.
- There is considerable variation in survival outcomes for people with cancer, with one-year survival in some parts of England more than 10% higher than in others, and deprivation is a significant factor.
- There is considerable variation in people’s experience of hospital treatment. People say that the aspect of care most needing improvement is communication, both information about cancer diagnosis, and demonstrating compassion and empathy.
- People with cancer have a greater risk of being diagnosed with cancer again in the future; they may develop secondary cancers; treatments can have long-term physical and mental health consequences; and there can be financial and practical consequences such as loss of in come. Older people with cancer may well be also living with other long-term conditions, and people may have caring responsibilities.
What do we know about people’s local experiences?
- People appreciate the support given by cancer nurse specialists, and the extra practical information they can provide. Cancer support groups were regarded as a vital lifeline to many patients.
- Better communication is needed, through clear good quality information, personalised to the individual.
- People want choice to exercise control, and to be involved in decision-making and to be kept well informed about how treatment is progressing.
- Bad news could be delivered insensitively, without compassion, and at worst without any apparent regard for privacy. Medical staff could deliver diagnosis in a way that did not show regard for a patient’s personal circumstances, lacked empathy, and consequently affected in some way patients’ subsequent cancer journey.
- The need to chase test results and/or follow up appointments, and cancelled appointments caused anxiety, frustration and disappointment for patients and carers.
- Some patients and carers wanted more time appointments to discuss questions and concerns.
For further information see www.healthwatchessex.org.uk and www.healthwatchsuffolk.org.uk
HOW we plan to make a difference
1.1 When symptoms of cancer are identified there is rapid access to diagnostic services and a quick answer.
- We will implement a new Faster Diagnosis Standard of 28 days from referral to diagnosis/ ruling out of cancer. For fast growing cancers, shorter intervals between referral to treatment improves survival rates and people’s experience of care. Furthermore, people with non-specific but concerning symptoms will be able to access diagnostic testing quicker through vague symptoms pathways. Monitoring will be through a Faster Diagnosis Standard: data collection starts from 2019, and full monitoring begins from April 2020, supporting the goal that 75% of patients with cancer will be diagnosed at stage 1 or 2 by 2028. We will deliver radiotherapy within 31 days from decision to treat to treatment. Our aim is for the most urgent cases as defined in the national radiotherapy service specification to commence treatment within two weeks.
- We will support the implementation of a Rapid Diagnostic Centre (RDC) pathway, including self -referrals for red flag symptoms. This will deliver a community based diagnostic service to support earlier diagnosis in our ICS from 2020. This will build on previous good practice of vague symptoms clinics within our trusts. Those who do not have cancer will be referred for the right support. We are the North Cancer Alliance test site for RDC; one RDC will be established in each regional Cancer Alliance area by 2020, with further roll-out by 2023/24.
- Primary Care Networks help improve early diagnosis locally. Neighbourhood approaches enable locally designed interventions that respond to local needs and challenges, and can help innovate in developing faster and more direct access to testing. There will be continued support for primary care cancer educations for both GPs and practice nurses.
- People will be able to have multiple tests for cancers at a single visit. We will reform organisation of diagnostic services and invest in resources. Better organisation improves quality of care and patient experience and reduces variation in clinical outcomes.
- We will ensure patient-centred cancer services continue to be developed with patient engagement and feedback as a core component in service development and improvement
2.1 People have access to the most advanced testing, treatments and care. We will enable this by:
- People will have the right treatment for their needs, agreed in partnership with the expert services involved in their care. Decisions about the right treatment will be taken in partnership with the person together with their carer and family, and will be based on best practice and evidence.
- At least 98% of patients should wait no more than 31 days for subsequent treatment, from the date a decision to treat is made, where the treatment is drug treatment. New advanced cancer treatments such as CAR-T therapies will be made available nationally beginning in 2019. We will support all eligible children and young people with acute lymphoblastic leukaemia to have access to CAR-T by March 2020, and support all eligible adults with large B-cell lymphoma to have access to CAR-T by March 2021. Changes in the Cancer Drugs Fund will support these developments.
- Regional radiotherapy networks will improve the quality and range of radiotherapy treatments available, beginning 2019. Improving radiotherapy treatments and implementing new service specifications will improve treatment outcomes. Funding will support innovation and advanced treatments. Quality assurance will drive high quality services and better health outcomes. People currently seeing proton beam therapy overseas will be able to secure treatment in England. The networks will also be able to contribute to national radiotherapy research.
- Equity of access to genomic testing for people with cancer and families, by 2029. In the next 10 years everyone who could benefit from cancer genomic testing is able to do so. From 2021 more extensive genomic testing should be offered to patients newly diagnosed with cancers. Uptake will be monitored to identify variation and ensure full and equal access.
- Accelerating the translation of research into practice. This will be supported by cancer innovation networks, including the Academic Health Science Network, One Clinical Community and Innovation Club.
2.2 Children, young people and young adults have improved access to testing, treatment and care.
- We will implement the updated service specification for children and young people with cancer, by 2021. Implementing the new service specification will ensure services provide the best integrated and co-ordinated care to children and young people, and will reduce variation in quality.
- Children and young people with cancer will have improved access to clinical trials and have the opportunity to tissue bank, beginning in 2019.
- More children and young people will be supported to take part in clinical trials so that participation remains high, and rises to 50% by 2025.
- Collaboration with voluntary sector organisations is key to achieving this aim.
2.3 People with cancer receive integrated services that are fully informed about their condition and needs.
- We will enable sharing of care records between acute and specialist hospitals, between secondary and primary care, and between health and social care. Sharing care records avoids unnecessary tests and/or visits to hospital, and ensures access to the right treatment, delivered promptly, in all care settings.
3.1 People will be more empowered to manage their care and the impact of cancer. We will enable this by
- Everyone with cancer having personalised care including needs assessment; care plan; and health and wellbeing information and support, by December 2021. This includes digital and community-based services, and Clinical Nurse Specialist or other worker support. Personalised care will incorporate factors relating to the person’s cancer, any other health issues and individual and family circumstances, and will be delivered in line with the Comprehensive Model for Personalised Care. Support will be integrated in terms of physical and mental health, primary and secondary care, and the statutory and voluntary sectors.
- Any co-existing long-term conditions, in particular among older people who may also be frailer, will be incorporated into care and treatment. A personalised approach enables people with additional needs due to co-morbidities to receive the best treatment without unnecessary additional burden upon them.
- Improve the recruitment and retention of Clinical Nurse Specialists and support workers. Ensuring sufficient capacity and skills of nurse specialists and other support workers ensures people have the right support for their needs.
3.2 The carers of people with cancer have the right information and support to stay well.
- Carers will receive information and support to help them in their caring role and to help them maintain their own good health and wellbeing. Where appropriate, this could include support with travel, respite care, emotional support and practical help.
3.3 Following treatment, people will have the right support for their needs and earlier diagnosis and treatment if their cancer has recurred. We will enable this by:
- Access to a supported self-management follow up pathway for people who have completed treatment. Follow-up pathways will meet people’s needs and enable rapid access to clinical support if people are worried their cancer may have recurred. Pathways will be developed over time for different types of cancer.
All Trusts putting protocols in place for personalising/ stratifying follow-up and systems for remote monitoring of patients on supported self management. These will be in place by 2020 for breast cancer, by 2021 for prostate and colorectal cancers. Key to achieving this will be:
- Reviewing training needs across our ICS in relation to confidence to implement personalised care for everyone diagnosed with cancer by 2021 i.e. communication training.
- Reviewing staff capacity and clinic space availability across our ICS to ensure patients have access to right expertise and support including Clinical Nurse Specialists from 2020/21 Considering continuation of Support Workers roles into 2021/22, and proposing an evaluation of the service to support continuation of the role beyond 2022.
- Supporting and empowering our acute trusts to improve Cancer Outcomes data collection for Holistic Needs Assessments and Living Well Beyond Cancer.
- Supporting the implementation of IT Remote Monitoring systems for patients on self management pathway to include funding for digital interoperability in Trusts where required.
- Development of patient portal for patients to keep in touch with their local hospital and flag when surveillance tests are required (Breast, Colorectal, Prostate, Lung & Gynaecological tumour sites).
3.4 People have services that recognise and respond to the long- term impact of cancer on people’s quality of life. We will:
- Introduce the new quality of life metric to measure the long-term impact of cancer on people by December 2019. Identifying and tracking long term impacts will enable services to respond to people's long term needs more effectively. Where appropriate, give people living with, and beyond cancer, and their carers, the practical, emotional, financial and spiritual support they need to live well and where treatment is not successful, to die well. Holistic support ensures that everyone who lives with cancer has the best quality of life possible.
- All patients, including those with secondary cancers, will have access to the right expertise and support, including a Clinical Nurse Specialist or other support worker.
We will know we are making a difference because we will see:
- Increase in proportion of cancers diagnosed at stages 1 or 2 across the regional Cancer Alliance, from 54.5% in 2017 to 62.6% in 2023/24
- Lower under-75 mortality rate from cancer considered preventable
- Increased one year and 5 year survival rates
- Fewer emergency presentations with cancer
- Improved cancer screening coverage for breast, cervical and bowel cancer
- Meeting or exceeding the standard two-week wait from referral to hospital for suspected cancer
Late presentation of cancer and the cost to the patient, family and health care system is a not infrequent occurrence. Making the patient well again and in this case allowing him to compete in the Grand Depart Classic 2019 was on the face of it a medical success but on reflection we (‘the system’) let him down. For the two weeks he was in hospital he had many ‘near death’ experiences. Responding to the cues of serious ill health sooner probably would not have dissuaded the patient from the charity cycle ride he subsequently undertook but it might have avoided the physical and psychological cost he experienced.
Health care professionals see late presentations of cancer and simply ‘deal with it’. Grateful thanks from the patient and their family when we can make them better only serves to reinforce our perception of success. On the other hand not infrequently thanks are also volunteered when we have demonstrated what the patient or their family always suspected even when we cannot help them beyond palliative manoeuvres. Instead and whilst not under-estimating the importance of positive feedback from our patients we need to look critically of what we did well but what we could have done better and debate it in fora to make change.
Taking a more analytical approach to what we did can be revealing. You never quite know what you will find when you lift the bonnet! Sharing the findings of this more critical appraisal takes skill and great care as the intention is to learning to foster a culture of positive change not erode feelings when staff are already feeling under pressure. Taking this case to our trade union engagement event was intentional as it set the tone that we need to work together. If in doubt that this might be cancer ask for advice from a specialist. Use the e-tools in the community to help stimulate more serious illnesses in the differential even if well down the list. Use our core listening skills and respond to the cues. Better to be safe than sorry!