Written evidence submitted by Macmillan Cancer Support (CBP0047)

 

  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 360,000 people receiving a cancer diagnoses every year.[1] 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.[2]

 

  1. Summary of recommendations

2.1.    In order to reduce the backlog, urgent referrals for cancer need to be sustained at well over pre-pandemic rates. This will enable the many thousands of people who have not yet received a diagnosis to quickly receive life-saving treatment. Efforts to address this should include ongoing public campaigns to raise awareness of cancer symptoms; as well as resources, use of the independent sector, and, where necessary, personalised support to reassure people that it is safe to come forward and what to expect when they do.

2.2.    There should be investment in evidence-based solutions that target people in harder to reach or deprived communities to ensure that the longest lasting legacy of the pandemic isn’t greater entrenchment of existing health inequalities. 

2.3.    Government and NHS England should future proof cancer care ambitions, acknowledging the impact the pandemic has had on care. This should seek to build back better cancer services, including making sure we’re world leading for cancer patients’ quality of life and the personalised, holistic care we need for all. This is now being routinely measured for the first time.

2.4.    The Government and NHS England must deliver a fully funded long-term work force plan to grow and support the cancer workforce and ensure it is sustainable

2.5.    UK Government should use the Comprehensive Spending Review to invest the cancer workforce, including in a new Cancer Nursing Fund, providing £124 million to train an extra 3,371 nurses to make up the projected shortfall in 2030. This will mean that people with cancer in England are able to access a CNS and the personalised care they were promised in the NHS Long Term Plan

2.6.    NHS England and Health Education England should develop and fund a comprehensive support package to promote specialist cancer nurses wellbeing and time and funding to access CPD.

2.7.    Health Education England should urgently review specialist cancer nursing careers to enable more nurses to become specialist cancer nurses, including developing structured pathways from general adult nursing into specialist cancer nursing and a greater focus on cancer care in the undergraduate syllabus. 

 

  1. Key messages

 

3.1.    The COVID-19 pandemic has had a profoundly disruptive impact on all aspects of cancer care, from ‘missing’ and delayed diagnoses to disrupted cancer care.

3.2.    The total number of people starting cancer treatment in England since the start of the pandemic is still almost 35,000 lower than expected.

3.3.    Many of the people who have not yet presented to the NHS with suspected cancer will do so in the coming months and it is vital that they receive fast, effective and personalised care when they do.

3.4.    Addressing the backlog will be challenging – the latest Macmillan analysis estimates the NHS in England would need to work at 110% capacity for 17 months to catch up on missing cancer diagnoses[3], and for 14 months to clear the cancer treatment backlog

3.5.    This formidable task is being taken on by a workforce already depleted by significant pressures. Cancer nurses in particular are being stretched too thin and there is a need for significant investment to ensure that coming out of the pandemic these professionals are able to offer vital support to everyone diagnosed with cancer.

3.6.    Macmillan estimates that in order to deliver personalised care for everyone living with cancer, the specialist cancer nurse workforce will need to grow by 3,371by 2030. We are calling for this investment to be made as part of the Comprehensive Spending Review.
 

  1. What is the anticipated size of the backlog and pent-up demand from patients for different healthcare services including, for example, elective surgery; mental health services; cancer services; GP services; and more widely across the healthcare system?

 

4.1.    The COVID-19 pandemic has had a profoundly disruptive impact on cancer services in England. It has impacted all parts of the cancer pathway, including screening, diagnosis, treatment and ongoing support. It has affected the care of people with a cancer diagnosis and led to the delay in many other diagnoses.

4.2.    While there have been increases in numbers of people presenting to the NHS with suspected cancer and being diagnosed in recent months, the total number of people starting cancer treatment in England since the start of the pandemic is still almost 35,000 lower than expected. The total number of people who have seen a specialist for suspected cancer since the pandemic began is still more than 250,000 lower than expected (a drop of 8%).

4.3.    Many of these people will present to the NHS in the coming months, either through screening, primary care or emergency routes. Actions can and must be taken to ensure that they enter the system as quickly as possible in order to confirm or rule out a cancer diagnosis.

4.4.    We do not yet have a clear picture of what this population will look like when they present to cancer services. It is possible that they will be diagnosed at later stages than their pre-COVID counterparts, requiring different types of care and potentially with a poorer prognosis. This could place additional strain on an already struggling system. It will be crucial for the select committee to look at NHS staging data when published and scrutinise NHS England’s plans for meeting patient need.

 

  1. What capacity is available within the NHS to deal with the current backlog? To what extent are the required resources in place, including the right number of staff with the right skills mix, to address the backlog?

 

5.1.    It is essential that everyone who is given a cancer diagnosis receives fast, effective and personalised care.

5.2.    Thousands of people have experienced disruption to their cancer care throughout the pandemic - one in four (26%) people with cancer reported disruption to their care during the second wave of Covid-19 in early 2021[4]. Macmillan research shows more than a third (40%) of those receiving cancer treatment in the UK in the run-up to this January’s lockdown were worried that delays to their treatment could impact on their chances of survival[5].

5.3.    This disruption to services and accompanying concern from patients is likely to continue as services recover and increasing numbers of people receive diagnoses and require treatment. The latest Macmillan analysis estimates the NHS in England would need to work at 110% capacity for 17 months to catch up on missing cancer diagnoses[6], and for 14 months to clear the cancer treatment backlog[7].

5.4.    This would be a formidable task even if the NHS cancer workforce was at full strength, but we know that it has been under increasing strain for many years. COVID-19 pressures have only added to an existing burden on staff.

5.5.    These pressures are clear from looking at cancer waiting times data. The 62-day target - the maximum two-month wait between urgent referral for suspected cancer and first treatment first started to be frequently breached over six years ago and it has now been missed continuously for over five years (66 months in a row), since January 2016. The 62-day target was breached again in June 2021 — only 73% of patients in England started treatment within two months of being urgently referred by their GP with suspected cancer, against the target of 85%[8].

5.6.    Cancer nurses in particular are being stretched too thin and there is a need for significant investment to ensure that coming out of the pandemic these professionals are able to offer vital support to everyone diagnosed with cancer as promised in the NHS Long-Term Plan[9].

 

 

  1. How much financial investment will be needed to tackle the backlog over the short, medium, and long-term; and how should such investment be distributed? To what extent is the financial investment received to date adequate to manage the backlog?

 

6.1.    Specialist cancer nurses advise, treat and manage the health concerns of people with cancer. They provide both clinical and emotional support for patients, as well as providing appropriate and personalised information. They also provide an essential role coordinating the multi-disciplinary team supporting an individual through their cancer journey. Specialist cancer nurses reduce treatment costs, increase efficiency, drive innovation and provide valuable information for service re-design as well as enable multidisciplinary care and communication between different teams.[10] The NHS Long Term Plan committed that everyone should have access to the right expertise and support, including a Clinical Nurse Specialist or other support worker.

6.2.    Evidence has shown that patients with a named CNS were more likely to completely understand the explanation of what was wrong with them and to agree that they had de finitely been involved in decisions about their care and treatment[11]

6.3.    Macmillan estimates that in order to deliver personalised care for everyone living with cancer, the specialist cancer nurse workforce will need to grow by 3,371 by 2030. 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.

6.4.    In order to fund the additional 3,371 specialist cancer nursing posts, £124 million will be required to train this nursing workforce. This will be in addition to investment in other aspects of the cancer workforce. We are calling for this investment to be made as part of the Comprehensive Spending Review.

6.5.    Della’s story: “From the point I was diagnosed my specialist cancer nurse, Antonia, has been by my side. Antonia helped me to understand different elements of my treatment, from helping me get a bed for my first consultation to checking I had all the paperwork needed for my blood tests before chemotherapy started. 

 

“When I was hospitalised for a few days before I started treatment, Antonia ensured I was seen immediately for my tests rather than being in the queue whilst feeling unwell. It was such a relief knowing that Antonia was going to be there for me during all the critical moments.

 

“It makes me feel so sad to know that not everybody will get a specialist cancer nurse to support them like I had. I have chatted to a few cancer patients who express that they feel alone, and they’ve received little to no support through their experience, including no support from a specialist cancer nurse.

 

“Having my cancer nurse’s support made all the difference in helping to navigate through the labyrinth of dealing with cancer treatment. Till this day, I have her telephone number and email and she acts as my support system when I need to speak to my oncologist. Without her, my cancer treatment would have felt lonely, confusing and isolating and I’m grateful for her support every single day.”

 

6.6.    Ita’s Story: “I was diagnosed with uterine cancer in February 2020, after which I was supported by my cancer nurse, Siobhan*.

“Siobhan was a constant presence at all my pre-chemotherapy appointments. In the absence of my husband being able to attend the appointments due to Covid-19, she was my whole support system. She helped with any worries and concerns I had, and I felt hugely reassured by her continual presence.

 

“Post chemotherapy, accessing primary care services during Covid-19 proved to be very difficult. I found myself becoming frustrated and agitated at not being able to book to have bloods taken or ask for medications for minor ailments. I had no one to reach out to but Siobhan. Her approach was consistently supportive, caring, and empathetic to my needs. She proved to be a constant support and the key person who advocated on my behalf. 

 

“However, Siobhan was overstretched in her role, balancing the needs of cancer patients and the hospital’s wider pandemic needs. When I would ask her what time her shift was due to finish, she’d reply saying she didn’t know, rather she would have to work until everything was finished. There were days I couldn’t contact her on the phone as she was extremely busy with clinics. 

 

“Despite this, my cancer nurse was the calm in my storm. [Use ‘My cancer nurse was the calm in my storm’ as pull out quote]. She helped me navigate both my treatment and after-care during the uncertainty of the pandemic and proved to be the most important person on my journey.”

 

*The name of Ita’s cancer nurse has been changed.

 

 

Sept 2021

 


[1] Statistics fact sheet, Macmillan Cancer Support, 2019

[2] Macmillan annual report, Macmillan Cancer Support, 2018

[3] Public Health England’s National Cancer Registration and Analysis Service. Covid-19 rapid cancer registration and treatment data. Accessed August 2021. Macmillan analysis shows an 11.7% drop in new cancer diagnoses in England between March 2020 and April 2021 compared to 2019 levels. This drop is equivalent to the increase we would see if new diagnoses occurred at 110% of 2019 rates for 17 months.

[4] Macmillan Cancer Support/YouGov survey of 2,156 adults with a previous cancer diagnosis. Fieldwork was undertaken between 16th February - 6th March 2021. The survey was carried out online. The figures have been weighted and are representative of all UK adults 18+ who are living with cancer

[5] ibid

[6] Public Health England’s National Cancer Registration and Analysis Service. Covid-19 rapid cancer registration and treatment data. Accessed August 2021. Macmillan analysis shows an 11.7% drop in new cancer diagnoses in England between March 2020 and April 2021 compared to 2019 levels. This drop is equivalent to the increase we would see if new diagnoses occurred at 110% of 2019 rates for 17 months.

[7] Public Health England’s National Cancer Registration and Analysis Service. Covid-19 rapid cancer registration and treatment data. Accessed August 2021, Macmillan analysis shows an 8.3% drop in first cancer treatments between March 2020 and June 2021 compared to 16 months of the 2019 average. This drop is equivalent to the increase we would see if first treatments were delivered at 110% of pre-pandemic rates for 14 months.

[8] NHS England. Cancer Waiting Times — National Time Series Oct 2009 — June 2021 with Revisions

[9] NHS Long Term Plan, NHS England, https://www.longtermplan.nhs.uk/areas-of-work/personalised-care/

[10] Cancer Clinical Nurse Specialists: An Evidence Review, Macmillan Cancer Support, 2012

[11] Alessy SA, Lüchtenborg M, Rawlinson J, Baker M, Davies EA. Being assigned a clinical nurse specialist is associated with better experiences of cancer care: English population-based study using the linked National Cancer Patient Experience Survey and Cancer Registration Dataset, Eur J Cancer Care (Engl). 2021 Jul 26.