NHS0033

Written evidence submitted by Macmillan Cancer Support

Macmillan Cancer Support response to Public Accounts Committee – Managing NHS backlogs & waiting times, November 2022

1. 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 390,000 people receiving a cancer diagnoses every year.[1] With our significant reach into the health service, expertise across the cancer pathway and unparalleled insight into the needs of people living with cancer, Macmillan is uniquely placed to understand the challenges in the existing system. Macmillan also plays a key role in supporting the NHS workforce funding over 12,000 Macmillan nurses, doctors and other health professionals[2]. In 2021, Macmillan services reached 2.4 million people affected by cancer[3].

2. Summary

2.1 Macmillan first highlighted the impact of the pandemic on pre-existing cancer care backlogs in 2020. More than two years on from the outbreak of the pandemic, the backlog of people waiting for cancer care in England continues to grow and have a profoundly disruptive impact on cancer services in England. The pandemic has impacted all parts of the cancer pathway, including screening, diagnosis, treatment and ongoing support. While there has been progress in some areas, thanks to the incredible efforts of our hardworking cancer professionals, for example on urgent referrals, the system still hasn’t been able to eliminate the backlog in treatment. Consequently, far too many people with cancer continue to experience unacceptable delays in accessing the care they desperately need.

2.2 Recent Macmillan analysis of cancer waiting times data shows that the number of people waiting too long for cancer treatment in England is over 500% higher than the same time a decade ago.[4] Latest NHS figures also indicate that 38,000 fewer patients received a cancer diagnosis in England during 2020 - a 12 percent drop on the previous year[5]. The latest Macmillan analysis estimates the NHS in England would still need to work at 110% capacity for a further 9 months to catch up on these missing cancer treatments — however, despite the very best efforts of our incredible health professionals, it has still not been possible for the NHS in England to achieve this level of increased activity in any month for more than two years.[6]

2.3 Surveys we carried out earlier this year show that cancer patients had been more concerned about disruption to their treatment this summer than they were at the end of last winter.

2.4 Workforce challenges remain the biggest barrier to reducing backlogs and waiting lists and providing care in the long-term. Retaining and increasing the number of qualified professionals in the system (at every stage of the cancer pathway) is therefore a vital part of being able to meet patient demand in future, as well as reducing clinical workloads.

2.5 Macmillan’s evidence shows that an additional 3,400 posts in England will be needed by 2030 to make up the projected shortfall in cancer nurses. Without this, people with cancer in England will struggle to access a Cancer Nurse Specialist and receive the personalised care they were promised in the NHS Long Term Plan. This modelling was done on the nursing workforce alone and doesn’t even take account of the tens of thousands of wider nurses, allied health professionals, and medics who will be needed to meet the needs of people with cancer.

2.6 The Government and NHS England must urgently deliver a fully funded, future-facing long-term workforce plan to grow and support the cancer workforce and ensure it is sustainable. In February 2021, almost 30% of nurses and midwives in England (equivalent to 108,000 staff) said they are more likely to leave the profession, compared to a year ago[7]. Cancer nurses and the wider cancer workforce need more support in order to ensure the NHS is able to retain these highly skilled and experienced workers. A key part of this is building the confidence that the Government is appropriately funding the NHS workforce based on up to date demand modelling of current need within cancer care. Confirmation in the Autumn Statement that the upcoming workforce plan will include independently verified forecasts for the number of doctors, nurses and other professionals that will be needed in 5, 10- and 15-years’ time, taking full account of improvements in retention and productivity is welcome.

2.7 Services are overstretched and working to full capacity and there is no clear silver bullet, but in order to help tackle the backlog, services need to be able to quickly access as much capacity as possible.

2.8 The Government must also prioritise the publication of the 10 Year Cancer plan for England and ensure the NHS is provided with sufficient investment to provide the standard of care cancer patients deserve. It is positive to see extra funding announced for health and social care in the recent Autumn Statement, however the NHS is being asked to make this money go further than ever. Realistically, higher inflation will likely restrict how much of a dent into cancer backlogs this support can truly make.

2.9 Prior to the pandemic, the UK lagged behind many comparable nations for 5-year cancer survival rates; the pandemic has exacerbated and deteriorated this already worrying position[8]. It is imperative the Government and NHS England build back cancer services better, including making sure we become world-leading for cancer patients’ quality of life and the personalised, holistic care patients need. Macmillan estimates that by 2030 around 4 million people will be living with cancer in the UK, therefore it is essential to future-proof cancer care.

3. Current challenges

3.1 COVID-19 and associated lockdowns resulted in a huge drop in the numbers of hospital operations, tests and consultations taking place. In England there remains a significant backlog in routine hospital care, with more than 7 million patients waiting to begin hospital treatment as of August 2022. 387,000 patients have been waiting more than a year and 2,600 waiting more than 2 years.[9]

3.2 Waiting times for cancer diagnosis and treatment have been steadily increasing for many years. Even before the pandemic, key cancer performance targets were not being met. In June 2018, only 79% of patients in England started treatment within two months of being urgently referred by their GP with suspected cancer, against the target in England of 85%[10]. Pre-pandemic, NHS services and health and care professionals were under pressure and struggling to provide the best care possible for an increasing number of patients, which impacted on timely access to care, care quality and patient experience. These pressures have only been exacerbated by the pandemic.

3.3 The ‘Delivery plan for tackling the COVID-19 backlog of elective care’, published in February 2022 set out the ambition for the number of people waiting more than 62 days from an urgent referral for cancer to return to pre-pandemic levels by March 2023. In addition, 75% of patients who have been urgently referred by their general practitioner for suspected cancer will be diagnosed or have cancer ruled out within 28 days by March 2024. The Department of Health and Social Care has committed an additional £8 billion from 2022/23 to 2024/25, in addition to the £2 billion Elective Recovery Fund and a £700 million targeted Investment Fund.

3.4 In launching the ‘Delivery Plan’ the Secretary of State promised to deliver “world class” cancer care, yet Macmillan's data reveals the number of people who waited too long for treatment is over 500% higher than the same time a decade ago, indicating that performance is going backwards. Macmillan remains deeply concerned about the impact of the current backlogs in cancer diagnosis and treatment.

• Official NHS data shows the number of people in England with a confirmed diagnosis of cancer and decision to treat who are still waiting to start treatment more than two months after their urgent referral continues to grow, and hit a peak of nearly 5,700 in the middle of September 2022, the highest number on record.[11]
• The number of patients waiting more than the 62-day target time in the past year has topped 69,000 across England, Northern Ireland and Scotland – double what it was in the same period in 2017-18[12] .
• The recently published National Audit Office report corroborates this picture, highlighting that only 62% of cancer patients started treatment within the 62 day target after an urgent GP referral in the first five months of 2022-23 (compared with a required standard of 85% and performance of 78% in the equivalent period in 2019). The NAO concludes that the March 2023 target is becoming” harder to meet” because of the increased referrals, on top of the backlogs in diagnosis and treatment.[13]

3.5 Latest NHS figures showed 38,000 fewer patients received a cancer diagnosis in England during 2020 - a 12 percent drop on the previous year[14]. The latest Macmillan analysis estimates the NHS in England would still need to work at 110% capacity for a further 9 months to catch up on these missing cancer treatments — however, despite the very best efforts of our incredible health professionals, it has still not been possible for the NHS in England to achieve this level of increased activity in any month for more than two years.[15]

4. Impact on patients

4.1 Macmillan has been increasingly hearing from people who are worried about the impact of these delays on their prognosis and quality of care. Surveys we carried out earlier this year show that cancer patients had been more concerned about disruption to their treatment this summer than they were at the end of last winter. In June 2022, almost two in five (38%) of those receiving cancer treatment in the UK were worried that delays to their treatment as a result of Covid-19 could impact on their chances of survival[16]— this figure was 33% in similar research carried out in late February/early March 2022.[17]

4.2 The impact of cancer care backlogs is being felt by people at all stages of the cancer pathway. Jules, from Hastings, was diagnosed at 37 in November of last year with stage 4 lung cancer, which has since spread to her spine and pelvis. As her cancer is incurable, she relies on her three-monthly CT scans to tell her if she’s clear to have another three months to live. Delays to cancer care means that this vital lifeline has been taken away from her, and she is facing an agonising wait.

She continues to live life with her partner and son to the full, but constantly feels she has to advocate for herself and other people living with cancer in the midst of this backlog, leaving her feeling angry and frustrated.

“To get diagnosed was hard. Initially, we were still in the COVID pandemic. I made a phone call and was firstly asked if I could send a photo in of the lump I had found. I used the strength within me to make sure I got an appointment to be seen, but it wasn’t easy to initially even get that appointment.

After that, I was on a two-week pathway, which cancer patients should receive. There was no guarantee that I could get all of the scans and appointments I needed within that two-week period, so it was clear the delays were showing back then.

It was torture waiting for scans and results. It’s absolute turmoil being in that position. I’m thankful that I had Macmillan by my side because they carried me through those times when I was in the waiting game. The one person throughout all of this who kept me ‘ticketyboo’ was my Macmillan nurse. She is an angel. If it wasn’t for her, I just don’t know where I’d be.

When I did receive my diagnosis, I had it from a consultant in the Ear, Nose and Throat team who couldn’t give me any information about my diagnosis. He literally just delivered the message “you’ve got lung cancer” and just sent me home. I then had to wait for another appointment to come through to speak to someone who could explain exactly what I was about to face.

I’m on a drug called Osimertinib, that was approved in 2015 and, so far, every scan I have at three months has put me at ‘stable’ because I’m incurable. However, my three-monthly CT scan was due last week, and I’ve got no idea when I’m going to receive that scan. I’ve just been informed that there’s a backlog and a shortage of staff.

I live for 3 months at a time, these scans are my lifeline. For that to be taken away from me is just awful. And I’m sure I’m talking on behalf of many other people in the cancer community that are in a similar situation. We shouldn’t be in this position, where our lifeline is being taken away from us. We are already worrying every day about our own personal battles with this cruel disease.

I’ve already been failed in the system by not being picked up in the COVID pandemic. To now not know if I’m going to be told that I’ve only got another three months to live is devastating.

Rishi Sunak needs to listen to experts in the field and invest in staff. There needs to be an investment in care for cancer patient. I’m no expert in how the NHS funding works or should be run, but Rishi needs to prioritise and listen to the front-line workers. They are the staff who are keeping cancer patients like myself alive.”

4.3 There remain significant variations in NHS performance across England. In its December 2021 report ‘NHS backlogs and waiting times in England’, the National Audit Office stated that patients in the worst-performing sub-region were more than two times as likely as patients in the best-performing sub-region to wait longer than 62 days for treatment.[18]

4.4 NHS guidance requires organisations to consider inequalities in access to treatment as they address the backlog[19]. Limited data is currently available about the demographics of those currently on waiting lists for cancer. Although wider research carried out by Healthwatch into the elective care backlog has found that women, disabled people, and people from ethnic minority backgrounds face longer waits.[20] The impact of long waits is also felt more keenly by these groups, with significant effects reported on their ability to work, socialise, keep fit and carry out household tasks.

4.5. Understanding who is most at risk of poorer outcomes is vital if the backlog is to be effectively tackled. Further measures are therefore required to increase understanding of inequalities in access, outcomes and experiences across the cancer pathway. For example, by routinely publishing data such as cancer waiting time split by patient characteristics to measure inequalities.

5. Workforce challenges

5.1 Availability of sufficient numbers of the specialist cancer workforce remains the rate limiting factor for improving cancer waiting times. Qualified professionals are required at every part of the cancer care pathway, from diagnostic testing to delivering holistic needs assessments and care planning. There are currently 132,000 full-time equivalent vacancies in the NHS, a 25% increase from quarter 4 of 2021/22, and an estimated 165,000 vacant posts in social care.

5.2 Macmillan have highlighted similar challenges within the cancer workforce. Our ‘Cancer Nursing on the Line’ report from September 2021 highlighted that 25% of people diagnosed with cancer in the UK in the past two years have lacked specialist cancer nursing support during their diagnosis or treatment.[21] Given the continuing pressures on cancer services, this figure is unlikely to have improved in the past year. More recent data from NHS digital (June 2021 - June 2022) saw a 25 per cent increase in the number of NHS nurses leaving their role, with an additional 7,000 leaving compared to the previous year[22]. The largest increase in numbers leaving was seen among the younger nurses, two thirds of leavers were under 45 years of age. Whilst this is not specific to specialist cancer nurses, the overall trend is extremely concerning and requires urgent action.

5.3 As wider pressures on the NHS and social care continue to impact the cancer workforce, cancer nurse specialists find themselves filling general workforce gaps. Macmillan estimates that in order to keep up with demand and deliver personalised care for everyone living with cancer, the specialist cancer nurse workforce will need to grow by 3,400 by 2030. In order to fund the additional 3,400 specialist cancer nursing posts, £124 million will be required to train this nursing workforce. This figure incorporates the training costs of the required advanced courses (£17 million), Master’s degrees, and costs to back fill roles (£107 million) while nurses are undertaking studies. In addition to this financial investment, improvements must be made to the structured pathways from general adult nursing to specialist cancer nursing, in order that nurses are fully supported to pursue a career in cancer care.

5.4 The number of specialist cancer nurses must be increased to ensure the NHS honours its commitment to ensure that everyone has access to the right expertise and support, including a Clinical Nurse Specialist (CNS) or other support worker. Further to this, specialist cancer nurses can help reduce treatment costs, increase efficiency, drive innovation and provide valuable insight for service re-design.[23]

5.5 These roles cannot be effectively filled by agency or bank staff. New research in the British Medical Journal has highlighted the importance of experienced nurses on permanent contracts as being particularly valuable - For the average team, adding an extra 12-hour shift from a fully qualified nurse would reduce the odds of a experiencing a patient death by around 10%[24]. Furthermore, using agency or bank staff comes at an additional cost; £7.1 billion was spent on agency and bank staff in hospitals in England in 2020/21 alone, up from £6.2 billion the year before. This is not a financially sustainable solution to workforce shortages and further underlines the need to direct more funding to the training, recruitment, and retention of healthcare professionals.

5.6 The broader cancer workforce also remains seriously understaffed, following years of underinvestment. The Royal College of Radiologists has reported that despite the pandemic related drop in patients, the UK continued to have a 17% shortfall of NHS clinical oncology consultants in 2021, which translates to 189 clinical oncologists. Without investment in the clinical oncologists’ workforce, they estimate the shortfall will increase to 26% (381) by 2026.[25]

5.7 Training and development opportunities within the NHS are crucial to improving capacity constraints within the workforce, improving both recruitment and retention of clinicians and healthcare professionals. Macmillan welcomes the extra £81 million funding allocated to Health Education England (HEE) in 2022/23 to expand the cancer and diagnostics workforce, including expanding the postgraduate medical training of cancer-related medical professions. Training and development budgets must continue to be protected and rise proportionally with NHS England budgets. As training opportunities can improve job satisfaction, providing opportunities to develop, these budgets should be seen as a key part of any retention strategy.

5.8 Macmillan welcomes the commitment by Government and NHS England to develop a long-term workforce plan which will consider the number of staff and the roles required and will set out the actions and reforms needed to improve workforce supply and retention. The government must now commit to publishing this plan in full, detailing gap analysis and role specific shortages, with a commitment to making the required funding available. Within this plan, specific urgent action needs to be taken in specialist cancer roles across diagnostics and treatment to ensure there is an adequate workforce available and prevent burnout and pressure on the frontline, as well as ensuring the delivery of high-quality and personalised care for people with cancer. This should be seen as a first step; future governments should commit to regularly publishing workforce strategies of this kind in order to provide better planning and recruitment targets.

6. 10 Year Cancer Plan for England

6.1 Macmillan welcomed the launch of the 10 Year Cancer Plan for England call for evidence in February 2022 which looks to set out a new vision for how we will lead the world in cancer care. The plan provides a radical opportunity to transform outcomes for people living with cancer over the next decade, and beyond. For Macmillan, this is about delivering world-leading cancer care that is equitable, harnesses innovation, and is personalised to the growing and complex needs of people living with cancer. Alongside sufficient funding to accompany the 10-year Cancer Plan, there must also be clear timelines for delivering its aims.

6.2 Macmillan wants to see the following included in the upcoming 10 Year Cancer Plan: ringfenced diagnostic and surgical capacity – for example, utilisation of surgical hubs and redesigned pathways, full access to independent sector capacity, ensuring integration with NHS provision,  access to the wider team of professionals - including primary care professionals and out of hospital support. For example, cancer care coordinators in primary care can help people to navigate the system, and signpost to support e.g. social prescribing, Allied Health Professions can provide nutrition and exercise support to help people manage their health while they wait for treatment. The Government must now prioritise its urgent publication.

6.3 Renewed efforts should be made, including ongoing public campaigns, to raise awareness of cancer symptoms; as well as resources and, where necessary, personalised support to reassure people that it is safe to come forward and what to expect when they do.

November 2022