Written evidence submitted by Macmillan Cancer Support (DEL0238)
- Macmillan is concerned about the immediate and long-term effects that disrupted cancer treatment and care will have on the 3million people living with cancer in the UK. We call on the Government to:
- Publish a COVID-19 response cancer plan to ensure that services and treatment across the country return as quickly as possible, with adequate resources, Personal Protective Equipment (PPE) and COVID-19 testing to deliver the safe cancer treatment and care people require.
- Ensure dignity and personalisation at End of Life is delivered.
- Ensure adequate PPE and COVID-19 testing is made available within social care, ensuring that local authorities deliver their statutory duties to provide care.
- Support the wider emotional and practical needs of those living and affected by cancer.
Macmillan Cancer Support
- Macmillan Cancer Support is a registered charity providing information and support for people with cancer. There are around 3 million people currently living with cancer across the UK with over 360,000 people receiving a cancer diagnoses for every year.
- Macmillan plays a key role in supporting the NHS workforce. Over the past ten years Macmillan has invested £386 million in the NHS. Macmillan funds nearly 12,000 Macmillan nurses, doctors and other health professionals.
- In 2018 an estimated 1.9 million people received personal, in-depth support from one or more of our Macmillan professionals or services.
- In 2018, in partnership with our supporters, Macmillan raised £230.8 million to support people with cancer and spent £195 million on services for people living with cancer. 98% of Macmillan’s income comes from fundraising activity. We are anticipating a £100m shortfall in our expected income in 2020 as a consequence of COVID-19.
Vulnerable people with cancer and COVID-19
- The national COVID-19 response is directly affecting thousands of people with cancer. Across the UK we estimate up to 240,000 people with cancer fall into the ‘extremely vulnerable’ classification because of their specific type of cancer or their treatment regime. This means they should have been contacted about ‘shielding’.
- Other people with cancer who don’t fall into the above list may also be at high risk because of their age. Two thirds of people living with cancer in England are over 65. This group are at higher risk of severe complications if they contract COVID-19, even if they don’t fall into the ‘extremely vulnerable’ category.
- People with cancer who are not at high risk from COVID-19 will continue to have a range of needs that are unrelated to COVID-19 or that have been exacerbated because of the pandemic.
- A large number of enquires to the Macmillan Support Line include concerns about access to food and medicine particularly for those that deem themselves vulnerable but not necessarily on the official extremely vulnerable “shielding” list.
- Given the likely longevity of the pandemic, it is essential that further processes are put in place by the Government to ensure that people living with cancer can self-identify as “vulnerable” and get the end to end support they may require. This needs to be supplemented with a comprehensive communications plan so that people living with cancer are aware of how and where to go to get the support they need.
Cancer Treatment Delays
- Macmillan is increasingly concerned about the immediate and long-term effects that disrupted cancer treatment and care will have on the 3 million people living with cancer in the UK. We’ve been told that thousands of cancer treatments have been changed, delayed or cancelled. Macmillan is keen for there to be clear data published that shows the level of disruption to cancer treatment and care across the country.
- At the end of March, NHS England published clear guidance about the prioritisation of cancer care and treatment. It outlined the need to continue services but also the steps that should be taken, in consultation with patients, should treatment be delayed or cancelled due to the risks of exposure to COVID-19. It also outlined the need to prioritise urgent cancer treatment and care in case there were capacity constraints within the NHS because of the pandemic.
- Macmillan understands that for the duration of the COVID-19 crisis, in some cases it may be clinically appropriate to delay or alter normal treatment protocols. We believe any such changes to treatment should be made on an individual basis and discussed with that individual. However, we are concerned that this has not always been followed and are aware of areas where there have been blanket suspensions of treatment..
- Some of the delays in treatment and care may have been clinically appropriate for that patient but it is important that this was appropriately communicated, and people understand why this decision has been made and when it will be reviewed. We’ve heard from people living with cancer who are extremely anxious about the progression of their cancer and the subsequent effect on quality of life and survival.
- Despite the clear directives from NHS England that providers should continue to prioritise urgent cancer treatment, we are concerned that there have been some instances where blanket cancellations of treatment may have taken place, which would be in contravention of this guidance.
- Macmillan has collated intelligence which indicates that 20 trusts in the NHS may have changed cancer care delivery. Some of this may be clinically appropriate - including location changes for cancer treatment or reduced cancer activity based on an individual’s circumstances, but some may have included suspension of cancer treatment due to capacity issues. Further insight is being gathered by Macmillan.
- Whilst we understand the need to make sure that the NHS has capacity to deal with the COVID-19 pandemic, delaying cancer treatment will have real negative consequences not only for patient outcomes but for NHS staff by building up demand for cancer services in the future. Pent up patient demand will only create a backlog in the system at a time when cancer waiting times are already at historical highs.
- For some patients, if their cancer is not treated in a timely way, it may reduce their chances of survival. This is especially the case for cancers which may grow and metastasise in the timeframe where their treatment is delayed.
- A study published by UCL and DATA-CAN has already predicted a 20% increase in cancer deaths due to the COVID-19 pandemic. It is clear that the significant disruption to cancer treatment may have a substantial effect on those patients awaiting treatment and care and it is essential that the Government does all it can to ensure that no treatment or care is forgotten whilst addressing the backlog caused by the pandemic response.
- Macmillan welcomes the letter from NHS England of 29th April that states “Referrals, diagnostics (including direct access diagnostics available to GPs) and treatment must be brought back to pre-pandemic levels at the earliest opportunity to minimise potential harm, and to reduce the scale of the post-pandemic surge in demand”.
- This guidance was a helpful reminder that cancer care is a priority. Whilst efforts have been made to continue urgent and critical cancer treatment, it is concerning that decisions may have been made that privileged the COVID-19 response (and the capacity needed for it) over that of delivering cancer care.
- We urge the restoration of services to take place, making sure no one with cancer is missed or forgotten. This restoration of treatment and care should include the ability to provide treatment and tests to people whose care has been disrupted because their immune system was compromised.
- It is imperative that the restoration of cancer services ensures that best practice in cancer care and support continues including ensuring that personalised care is still provided – offering everyone a holistic needs assessment and support plan.
Impact on cancer diagnosis
- Some parts of the country are seeing a rapid decline in urgent referrals from GPs for suspected cancer by as much as 75%. In addition, A&E attendances have fallen by up to 60%, where a small proportion of people with cancer are diagnosed through emergency routes.
- To improve presentations in primary care and therefore GP referral rates, Macmillan has supported the NHS’ ‘help us help you’ public information campaign. It is important that the NHS continues to encourage people to access primary care if they are concerned about anything and encourage GPs to once again open for regular business.
- Screening programmes, for people without symptoms, but who could have breast, cervical or bowel cancer, have been suspended in Scotland, Northern Ireland and Wales and severely impacted in England.
- Both the decreased levels of screening and GP referrals to investigate cancer symptoms may mean we unfortunately see an increase in late diagnoses, with worsened prognoses. We may later see increased needs within the cancer community and/or a dip in cancer survival rates.
- The effect of a short-term drop in 2-week referrals is likely to result in a surge of people requiring urgent cancer treatment, and even greater pressure at certain points of the diagnostic and treatment pathway, when the crisis eases off. Before COVID-19, NHS England’s performance against Cancer Waiting Times targets had fallen to its lowest ever recorded level. Therefore COVID-19 recovery is likely to exacerbate pre-existing delays.
- Health inequalities has become even more apparent during COVID-19. We already know that those from deprived backgrounds are more likely to be diagnosed through emergency routes, be diagnosed later and also more likely to develop cancer earlier in their life.
- The increases in disrupted treatment and reduced numbers visiting A&E may potentially affect access for people from deprived backgrounds, and mean that they have more severe physical and emotional needs. We are concerned that the current COVID-19 pandemic may exacerbate these already existing inequalities within our society.
Protecting the cancer workforce
- Over 400 Macmillan NHS professionals, who normally deliver cancer care, have been redeployed towards the NHS front line in order to boost the ability to respond to COVID-19.
- Macmillan has received anecdotal reports that in some NHS Trusts, cancer teams are being ring-fenced from re-deployment, but not in others. It is currently unclear how staffing for cancer services is being monitored by NHSE/I, nor when redeployed staff will be allowed to return to their main services.
- Whilst it is clear from their letter of 29th April, that NHS England would like cancer treatment to return to pre-COVID levels, Macmillan is concerned about the impact on the cancer workforce should a second surge in COVID-19 cases occur.
- Macmillan would like to see NHS England produce guidance recommending that no additional redeployment of members of the cancer workforce takes place, to ensure that cancer services can continue now and into he future.
Ensuring safe access to treatment in recovery phase
- To achieve NHS England’s ambition for cancer treatment and care to return to pre-COVID-19 levels, Macmillan supports the introduction of “cancer hubs” to ensure safe and equitable access to cancer services.
- To support restoration of services, there should be rapid establishment of ‘clean hubs’ with the Department of Health and Social Care and NHS leadership ensuring the required staff, testing and PPE is available to support these operations. This includes ensuring the full provision of appropriate PPE for staff across all settings so they can continue to deliver cancer treatment and care.
- Implementing an effective and efficient COVID-19 testing policy of patients, staff and visitors, should be an urgent priority in order to support the routine delivery of treatment in COVID-19 free cancer hubs. Tests should be rapid and readily available including for asymptomatic patients and staff and where appropriate for families and loved ones of people receiving end of life care.
- The actions needed to restore services will depend on local circumstances such as the scale of impact of COVID-19 on the local population, the provider’s staffing numbers, and the decisions that were made about how to prioritise scarce resource at the start of the pandemic.
- Progress towards the restoration of services should be monitored closely and timely data made publicly available for scrutiny to identify ongoing bottlenecks in the diagnostic and treatment pathways and to ensure that unacceptable variations in patient outcomes and experience do not develop across the country.
- If treatment has been suspended, in order to mitigate negative impacts, clear protocols are needed to ensure that any patients not referred for urgent investigations or for necessary treatment are re-prioritised when services regain capacity.
- This needs to be part of the wider health and social care recovery plan as outlined in NHS England’s letter of 29th April. NHS England are clear that recovery plans should be undertaken on a local level. However, given the inconsistency in which previous NHS England guidance on cancer services has been applied across the country, Macmillan has concerns with this approach and would like to see robust oversight by NHS England.
- Macmillan is therefore calling on the Government to publish a COVID-19 response cancer plan for the country to ensure that services and treatment return to normal as quickly as possible in all areas of the country within next phase of the response to the pandemic, and that cancer treatment and care can return to pre-COVID-19 levels.
- An important aspect of the cancer recovery plan will be ensuring NHS preparedness for any further second or third waves or surges in progression of COVID-19, to protect cancer treatment and care whilst delivering key lifesaving support to COVID-19 patients admitted to hospital.
- Part of the scrutiny process within the recovery phase which will be essential to ensuring the cancer services can return to pre-COVID-19 levels will be releasing the raft of data sets normally published by the NHS. We are aware that many of NHS England’s performance metrics have been paused. If services are being restored within the restoration phase, to ensure ongoing monitoring of this situation, part of this should be the release of important data metrics.
- Understanding and capturing data on the usage of these clean hubs will also be an important consideration as well as ongoing waiting times for treatment. Local data should also be regularly collected and made publicly available.
Delivering System Change – NHS Long Term Plan & NHS People Plan
- Our health care system is facing a staffing crisis that was already impacting on frontline services and affecting the care patients receive before the pandemic. Before the COVID-19 pandemic, there were more than 40,000 nurse vacancies across the NHS workforce. Following COVID-19, we are concerned that NHS capacity may be further depleted along with a workforce that has undergone a sustained difficult period.
- Due to concerns with the current levels of NHS staffing, ensuring that cancer services had a sufficient fully trained, and sustainable workforce to deliver 21st century cancer care was a critical element needed within the NHS People Plan. Macmillan would not wish this work to be lost within the need to respond to the pandemic and urge the Government to publish a comprehensive and well-resourced People Plan.
- The NHS Long Term Plan included some very welcome commitments on improving cancer diagnosis, psychological support for people with cancer, personalised care and holistic needs assessments. Macmillan is concerned that these welcome system changes will be lost or significantly delayed due to the pandemic.
Wellbeing of cancer patients
- Anxiety about COVID-19, its impact on cancer treatment and potential impact on people with cancer and those they care about, is exacerbating cancer-related anxieties and uncertainty.
- The number of phone calls to the Macmillan Support line about COVID-19 increased by 1600% in March. Cancer treatment and concerns about work were the overriding issues raised. Cancer services must ensure that any patient experiencing changes to their treatment has access to support services, including for their mental health, and is signposted to the practical support on offer for people shielding. Quality of life is likely to be significantly impacted for people facing increased uncertainty, leading to greater anxiety.
- Responses to a Macmillan survey from people living with or affected by cancer showed high levels of emotional need and anxiety resulting from delayed treatment; high levels of concern around money due to furloughing, lack of work for the self-employed, difficulties claiming benefits and the need to access food banks.
- It is therefore essential that additional resources are committed to ensuring that mental health interventions can continue for all ages with open access crisis services and helplines and planning for an increased demand due to COVID-19.
- The resumption of cancer services will go some way to reduce levels of anxiety faced by people living with cancer.
- The vast majority of care received by people living with cancer comes from informal carers (over 90%). Despite being eligible for support in their own right under the Care Act 2014, over half of all cancer carers (55%) receive no support at all. 60% of carers of people living with cancer have experienced stress, anxiety or depression.
- COVID-19 will lead to increased strain on carers for people with cancer and may compromise the ability of carers to continue to provide vital care. There is a risk of increased isolation and stress as a result of advice to limit social contact.
- Macmillan is concerned that under the Coronavirus Act, local authorities can choose to exercise the right of ‘easement’ under which they can suspend their statutory duty to assess and support carers and those they care for, as provided for within the 2014 Care Act. Macmillan is aware that some local authorities have already chosen to exercise this right and would like assurances that services and support will be provided as usual after this crisis passes.
- 11% of people living with cancer aged over 50 have social care needs severe enough that they would be eligible for a formal social care package. Around a quarter have difficulties with some aspects of caring for themselves, with dressing and bathing being the most commonly cited.
- COVID-19 has exposed the impact of chronic underfunding of social care and the impact that this has on the ability of care homes and of home care agencies to keep people safe. Agency staff going from home to home with inadequate PPE was not a safe model.
- Domiciliary care agencies are seeing a 15% reducing in revenue as local authorities and individuals are cancelling care visits, the reliance on increased agency staff and the additional costs of paying for PPE. There have also been delays in getting the additional funding from local authorities to providers, which means that the market is currently experiencing instability.
- The Government must therefore urgently undertake the promised reform of social care. Macmillan believes that a funding solution for social care needs to be achieved through pooling risk on a compulsory whole adult population basis, funded through taxation with social care being free at the point of use.
End of Life care
- Macmillan welcomes the updated family visitation guidance for those at end of life in hospital, care homes and hospices. However, Government social distancing guidance does not currently include visiting people who are at end of their life in their home and we await updated guidance from the Government on this. It is imperative that the ‘right to say goodbye’ is available to families and individuals in all settings, including if they are receiving end of life care at home.
- We are aware however of some distressing examples of where the guidance on visiting care homes and hospices is being interpreted overly strictly and only allowing “one visitor” in total, rather than “one visitor at a time”. For families experiencing end of life, this is unduly limiting access to loved ones and causing unnecessary problems and distress. Macmillan awaits urgent clarification of this guidance from Government.
- Macmillan are concerned about the capacity in community services to address the anticipated increase in demand for palliative care in the community.
- The COVID-19 community service guidance states that more families and carers would have to provide more care than they usually do to deal with the “anticipated increase in demand and stretch in workforce availability”.
- Provision of End of Life care is reliant on the capacity of community-based palliative care teams which must be maintained and not redeployed. If this capacity is not in place locally, more non-COVID-19 patients at end of life will be admitted to hospital and less will be discharged, reducing capacity to treat COVID-19 cases in hospital.
- Plans must be published to explain how community-based palliative and end of life teams will meet this surge in demand in a period of unprecedented numbers of deaths and ensuring that the core values of personalisation and dignity at end of life are adhered to. Family members and carers must not be left to provide potentially unsafe end of life care in the absence of community NHS support.
Macmillan recommendations to the Committee
Vulnerable people with Cancer
- Government to implement a process for people living with cancer to self-identify as “vulnerable” and ensure they get the end to end support they may require, including a comprehensive communication plan.
Cancer Treatment Delays
- The restoration of cancer treatment and services must happen, making sure no one with cancer is missed or forgotten. The Government must do all it can to ensure that cancer does not become the forgotten “c” within this pandemic.
- It is imperative that ‘restored’ cancer services guarantee the continuation of previous best practice cancer procedures including ensuring that personalised care is still provided through offering everyone a holistic needs assessment and personalise cared and support plan.
Impact on cancer diagnosis
- NHS to continue roll out of “help us, help you” public awareness campaign to encourage people to access primary care if they are concerned about symptoms.
Protecting the cancer workforce
- To ensure the restoration of cancer care and treatment, NHS England to produce guidance recommending that no additional redeployment of members of the cancer workforce takes place within any further waves of the pandemic.
Ensuring safe access to treatment in recovery phase
- Widely introduce ‘hub’ models, where cancer treatment is consolidated in an area in a COVID-free hub, with centralised triage to prioritise patients based on clinical need. This has been an effective way of continuing cancer treatment and is being held up as a model which could be extended to other conditions.
- The Government to publish a countrywide COVID-19 response cancer plan to ensure that services and treatment return to normal as quickly as possible in all areas of the country within the next phase of the response to the pandemic, and that cancer treatment and care can return to pre-COVID levels.
- Progress towards restoring services and reducing the treatment backlog should be measured through regular publication of relevant data to ensure unacceptable variation in patient outcomes and experience does not develop.
Delivering System Change
- Government to publish the NHS People Plan to ensure that cancer services have a sufficient fully trained, and sustainable workforce to deliver 21st century cancer care.
- The Government to reaffirm their commitment to The NHS Long Term Plan including very welcome commitments on improving diagnosis, psychological support for people with cancer, personalised care and holistic needs assessments.
- Social care professionals must have access to the necessary PPE equipment.
- The Government must provide assurances that the statutory duty to assess and provide necessary support to patients and carers will return as soon as possible.
- The Government must urgently undertake the promised funding reform of social care.
End of Life
- Guidance must be updated to allow people to visit loved ones at the end of life at home, where appropriate on more than one occasion. This also needs to be reflected in social distancing guidance, with sufficient PPE provided for these visits.
- Solutions need to be found to address the surge in demand for community-based palliative care whilst ensuring that the core values of personalisation and dignity at end of life are adhered to.
 Macmillan Cancer Support, Statistics fact sheet 2019 https://www.macmillan.org.uk/_images/cancer-statistics-factsheet_tcm9-260514.pdf
 Macmillan annual report 2018, page 14 https://www.macmillan.org.uk/_images/macmillan-2018-annual-report-and-accounts_tcm9-354056.pdf
 NHS England and NHS Improvement estimated in mid-March that 200,000 people with cancer needed to be contacted about shielding because they were deemed to fall into the ‘clinically extremely vulnerable’ classification in England, which Macmillan estimates if a similar ratio to incidence in 2017 applied across the UK, it could equate to around 240,000 ‘clinically extremely vulnerable’ people in the UK. Since this estimate was made additional people living with cancer may have been identified as ‘clinically extremely vulnerable’.
 UCL & DATA_CAN, 29th May - Deaths in people with cancer could rise by at least 20% https://www.data-can.org.uk/latest/deaths-in-people-with-cancer-could-rise-by-at-least-20
 Second phase of NHS response to COVID-19: Letter from Simon Stevens and Amanda Pritchard https://www.england.nhs.uk/coronavirus/publication/second-phase-of-nhs-response-to-covid-19-letter-from-simon-stevens-and-amanda-pritchard/
 Unpublished research (2020) commissioned by Macmillan from the Centre for Health Service Studies at the University of Kent. Researchers conducted quantitative analysis of the English Longitudinal Study on Ageing.
 The Rich Picture: Carers of people with cancer. Macmillan 2016
 Unpublished research (2020) commissioned by Macmillan from the Centre for Health Service Studies at the University of Kent. Researchers conducted quantitative analysis of the English Longitudinal Study on Ageing