Written Evidence Submitted by Cancer52

(CLL0068)

1. Introduction

1.1.            Cancer52 welcomes the opportunity to submit evidence to the Health and Social Care Committee and Science and Technology CommitteeJoint Inquiry; Coronavirus: lessons learnt.

2. Cancer52

2.1.            Cancer52 is an alliance of nearly 100 predominantly small patient support group charities working to address inequality and improve outcomes for people with rare and less common cancers. Cancer52 represents the nearly 150,000 people diagnosed with rare and less common cancers every year[1] and over £220 million of charitable spend. However, these numbers do not tell the full story of what our members do for people with rare and less common cancers, day in, day out. Pre-COVID, our charity members were thriving largely small organisations employing people, fundraising and contributing significantly to our national economy.

2.2.            Rare and less common cancers are all those that are not included in the group of the four most common cancers - bowel, lung, prostate and breast. Although fewer people are diagnosed with these cancers than the four most common cancers, more people die from these cancers: 74,500 people every year[2]. In fact, 47% of the cancers diagnosed in 2017 in England were rare or less common cancers but 55% of the deaths from cancers were from these conditions[3].

2.3.            To inform this submission Cancer52 has undertaken:

■           two online surveys of its members - one in early April and one in early May,

■           an online survey of over 1,000 people with rare and less common cancers in England over summer 2020

■           A topline meta analysis of 14 patient surveys of people with rare and less common cancers

■           regular  discussions  with our member organisations at virtual meetings throughout the coronavirus crisis, as well as other key stakeholders working in the cancer community,

■           co-hosted a virtual roundtable discussion with Keep Up With Cancer to examine any positive innovations on cancer treatment and care as a result of the pandemic.

3. Key headlines

3.1.            Cancer52 commends the efforts of all those working in health and social care to tackle, contain and treat Covid-19. Cancer52 and its members understand that these are unprecedented and challenging times for everyone - including those working in Government, those working on the front line and those living with cancer.

4. Impact on people with rare and less common cancers

4.1.            People with rare and less common cancers have experienced several challenges during the coronavirus crisis:

■           Referrals for cancer have dropped during the Coronavirus crisis as people have been nervous to come forward with symptoms that could be cancer. Cancer52 is concerned that this means fewer people with rare and less common cancers are being diagnosed and that the opportunity for early diagnosis and therefore life saving treatment, has been missed. While the NHS along with charity partners have worked hard to boost referrals, they are yet to recover to pre-pandemic levels and some groups of patients seem particularly affected.

■           Some people with rare and less cancer have had their treatment paused or halted - for example, palliative treatment stopped, surgery pushed back or immunotherapy interrupted. While this is causing anxiety among patients, particularly with concerns about cancer progressing, people are also worried about the dangers of coming into hospital for tests and treatment while the pandemic is ongoing.

■           Some clinical trials have been halted or were paused due to the coronavirus crisis. Some patients were withdrawn from existing trials due to concerns about their safety. For some patients, participating in clinical trials offer their only opportunity for treatment.

■           Cancer52 estimates that around 100,000 people with rare and less common cancer were told to shield themselves in the first wave of the pandemic and have been advised to take additional precautions in the second. The language and communication around shielding, isolating and social distancing has been confused, leaving people unsure which group they belong to and what action they should be taking.

5. Impact on charities

5.1.            Covid-19 has had a significant impact on rare and less common cancer charities. A survey of Cancer52 members found that a majority had seen a drop in income and they are worried about their long-term future. Losing charities that represent and support people with rare and less common cancers would weaken the patient voice and cut the support available to people with rare and less common cancers. 

5.2.            Member charities have recorded increased demand for their information and support lines, reflecting concerns among patients about Covid-19. Our members are providing support and advice to patients when NHS services have not been able to do this. In our survey of charity members, two thirds of respondents said demand for their services had increased - about a third had seen demand increase by more than 50%. However this work is not funded and the ability of members to fundraise has been dramatically hindered by the lockdown and social distancing restrictions. Seven in ten respondents to our survey had seen their income hit by the coronavirus, with some reporting drops of over 50% and others expecting income to fall in the future.  The majority of Cancer52 members have an income of below £500,000.

5.3.            Our members experienced difficulty accessing government funding and some of the support provided to businesses was not relevant to charities.  It is vital that frontline organisations, including Cancer52 members, are able to access funding quickly and easily.

6. Lessons learnt

6.1.            Communication

Cancer52’s survey of over 1,000 people with rare and less common cancers showed that communication had been a key issue for people during the pandemic. People with rare and less common cancers had found messaging confusing and had struggled to know where to go for information and clarity. Surveys by our members showed that some people were left confused about whether they should or shouldn’t be shielding. Ensuring people understand what they should do and the risks to themselves is vital in a health emergency such as this.

6.2.            It is also worth highlighting the consequences of overly effective communication when the wider implications have not been considered. Cancer referrals dropped to 40% during the first lockdown and are only now recovering. It is believed that people did not present to their GP with concerns or symptoms and some continue to do so. This is partly due to the effective message to stay home and protect the NHS and also because of concerns about the dangers of catching the virus.

6.3.            Collaboration

The pandemic has seen organisations across the NHS, industry and charities work more closely together, sharing expertise and intelligence. For example, we have heard that a clinicians’ Whatsapp group was created in one cancer discipline during the height of the first wave to quickly share intelligence and disseminate clinical information. This group has continued throughout and has provided a more rapid way of ensuring clinical staff are up-to-date and can support each other. This has seen the implementation of new pathways happen more quickly and effectively than has happened in the past, for example the move to five fractions of radiotherapy for breast cancer instead of fifteen.

6.4.            Pace

As well as the unprecedented development of vaccines within a matter of months, other processes have also been sped up during the pandemic. For example policy to support businesses and people, and the creation and approval of new clinical guidelines by the National Institute of Clinical Excellence. Both these processes have been known to be slow in the past, but the pandemic has shown with the right resources and focus these can be done more quickly. For example, during the first wave treatment protocols were adapted and new pathways created to optimise the shielding of cancer patients and reduce clinical contact.

6.5.            Failure to recognise charities that support people and causes across the country. Cancer52 charities work to help people with rare and less common cancers all across the country. Our member charities provide vital support to the NHS by helping these people. Many Cancer52 members were not able to access funding from the central Government pot or the National Lottery Funding scheme, because of a reliance on supporting specific geographical communities. However, many worthy charities such as our members support communities that are virtual and geographically dispersed such as people with the same rare or less common cancer. Just because such communities aren’t able to meet regularly in the same village hall does not make them any less deserving of help or support, particularly in these unprecedented times.

6.6.            Patients, families and clinical experts trust Cancer52’s members. They provide cancer patients with support and knowledge, and fund research. We are adept at building communities across disparate geographies. This includes online patient support groups, helplines and websites as well as face-to-face support groups and services such as counselling or advice. They are embedded in, and dedicated to, the NHS and people living with rare and less common cancers. We are a national cancer community, regardless of place, and a driving force behind cancer support and care in the UK.  

7. Recommendations

7.1.            The Government must ensure that rare and less common cancer charities are able to access funding and support.

7.2.            The Government must continue to improve its communication to the public and patients.

7.3.            Organisations such as the NHS, pharmaceutical industry and charities should learn from the innovative ways of working seen during the pandemic and ensure these are locked in going forward.

(November 2020)