Written evidence submitted by Myeloma UK (CBP0006)
About Myeloma UK
Myeloma UK is the only organisation in the UK dealing exclusively with myeloma, a rare blood cancer arising from plasma cells.
We work to deliver better outcomes for patients, improving diagnosis and standards of care, investing in research, providing information and support and making sure the patient voice counts with decision makers. We have seen a 249 per cent increase in demand for our information and support services during the COVID-19 pandemic.
We receive no Government funding and rely almost entirely on voluntary donations and fundraising.
Whilst there are many aspects of the pandemic which have impacted myeloma patients, our focus in this submission is on:
A significant impact of COVID-19 has been the fall in urgent referrals for suspected cancer. NHS England data which supported the Cancer Recovery Plan shows that urgent referrals for blood cancer in April and May 2020 fell to almost half of the 2019 rate. While referral rates have recovered and shown a slight upturn, with haematology rates showing at 108% of pre-pandemic levels, this is nowhere near the extent needed to make up for the reduction in activity.
We do not have enough data to understand to what extent this reduction was due to patients not presenting with symptoms or fewer referrals from primary care. We also do not know what impact remote consultations may have had on GPs’ ability to pick up cancers like myeloma, which often present with vague symptoms. This is particularly worrying in myeloma where patients already present multiple times to their GP with non-specific symptoms.
We also lack a breakdown of data for specific blood cancer types. However, it is clear from the steep decline in referrals and the rate and level of recovery since, that there are many people who will have received a late diagnosis of myeloma, or who may not yet have been diagnosed due to the impact of COVID-19.
This impact comes on top of the fact that myeloma patients already have one of the worst diagnosis experiences of any cancer. (Delays to diagnosis and treatment in myeloma results in a high proportion of patients presenting with more advanced disease, including at Accident and Emergency (A&E) and often leads to worse quality of life and survival outcomes.)
To address these challenges, we need:
broken down by blood cancer type
whose diagnosis has been delayed due to COVID-19
Rapid Diagnostic Centres
Rapid Diagnostic Centres (RDCs) deliver a new pathway for patients with vague but concerning symptoms and have the potential to identify blood cancers and speed up the time to diagnosis. RDCs have been negatively impacted by the pandemic, with delays in rollout and a knock-on decrease in the number of patients diagnosed via this pathway.
We welcome the fact that new cancer treatments, including treatments for myeloma continued to be considered by NICE during the pandemic. This has led to three new myeloma treatments being approved since April 2020.
Access to alternative treatments that reduce the need for patients to attend hospital has been a very welcome and much needed intervention during the pandemic. We need these to be in place for as long as needed and for patients to continue to be able to re-join the pathway at the point they left, where clinically appropriate.
“The hospital made some good changes to my treatment plan. This reduced the number of times I had to visit hospital and the amount of time I spent in hospital, and all my anxiety and stress”
“The decision was made to switch my daratumumab, which I’d received IV, to a subcut injection, so I was in and out of hospital in 20 minutes on a good day. I was also allowed to administer my own Velcade injections at home, so that was one less visit to hospital a week, and it was easy.”
Guidance on the use of oral treatment alternatives and subcutaneous daratumumab were developed and implemented swiftly by NICE and NHSE. However, there is a lack of published data on alternative treatment usage, and a lack of understanding of the long-term impact on outcomes and future treatment pathway gaps that may arise due to oral alternative changes.
We have obtained some data on usage of the COVID alternative treatment options during the pandemic from industry, with over 1500 patients benefitting from this intervention. This shows that the data is being gathered but is so far not published. It is vital that NHS England and clinicians are able to manage the potential impact of this essential intervention and ensure that no patient is disadvantaged at a later point in the pathway.
We also know there has been a significant impact on supportive care for myeloma patients, such as use of intravenous bisphosphonates. Often patients don’t understand why supportive care treatments have been stopped and are rightfully concerned about the implications of this. We need more data to understand the impact of these treatment changes.
“My Zometa treatment was cancelled. People don’t explain the effect of this. We need to be reassured.”
Stem Cell Transplants
During the early months of the pandemic, we saw a very significant drop in stem cell transplants (SCT) and patients were concerned about the delays this caused. SCT activity has now recovered but there is still a lack of data on patients who may have missed the opportunity to have a SCT or how it may have disrupted their optimum treatment pathway. There may also be significant geographical disparity in the impact of reduced SCT’s.
Conducting clinical research, alongside the delivery of care in the NHS is an important aspect of the NHS. Not only can it improve patient experience and outcomes, but it also provides benefits to staff and organisations as well as additional economic benefits.
Benefits of conducting clinical research in the NHS
Patients treated in clinical settings engaged with research have improved outcomes, lower mortality rates and increased confidence in the care being delivered, with research active NHS organisations seeing improved Care Quality Commission (CQC) ratings.
57% of doctors surveyed by the Royal College of Physicians (RCP) said they would like to be more involved in research. 67% of those surveyed said having dedicated time for research would make them more likely to apply for a role. CQC analysis also shows that staff working in NHS sites with higher clinical research activity levels are more likely to recommend their own organisation.
Clinical research represents a sound economic investment in UK intellectual capital; bringing in and developing talent; creating ‘spin off’ companies based in the UK; and speeding up the discovery of new medicines. The NIHR Clinical Research Network (CRN) supported clinical research activity generated £2.7 billion GVA in 2018/2019.
The anticipated size of the backlog and pent-up demand from patients for clinical research
The benefits outlined above are now at risk of being seriously undermined as a result of clinical backlogs. If clinical research activity continues to decline, then this will impact on patient outcomes.
10% of studies remain paused due to the pandemic
At the peak of the pandemic, roughly 70% of all clinical trials on the NIHR portfolio had been paused or cancelled. Recent data shows 10% of the studies remain paused whilst 3% (242) have had to be stopped or cancelled completely. This does not account for the significant reduction in new studies opening up in the UK. These figures represent significant portions of the UK’s portfolio and will leave many patients without the option to take part in clinical research.
Studies that are open are struggling to recruit patients
Even for those studies which are open, recruitment to non-COVID research remains much lower than pre-pandemic levels (47,827 patients recruited in June 21/22 compared to 68,361 recruited in June 19/20). Recruitment can vary between months, but recruitment in the UK has been consistently low for non-COVID research since January 2020. If studies are not able to recruit to target, then they are forced to either extend the study timelines, which will come at a cost, or to fund clinical research in another country that may be better place to reach recruitment targets impacting both patient outcome and the UK’s ability to lead in the field.
Many patients are feeling both ‘anxious’ and ‘frustrated’ at the current state of care, including around clinical research, . 33% of myeloma patients felt their mental health was more difficult to manage during the COVID-19 pandemic, compared to usual. These feelings are unlikely to be unique to the patients responding to these surveys and would be expected across a variety of vulnerable disease groups.
Staff and services have been directed away from research to front line services
The redeployment of clinical research staff has only exacerbated disruption issues, and left research patients with less support than they had before. The pandemic will have only made such issues worse, with over 400 Macmillan NHS professionals being deployed elsewhere.
Although clinical research staff are now returning from redeployment, the picture is still patchy, with COVID research representing a significantly large new research discipline that is taking up a substantial amount of capacity within a system that was already very overstretched. Without the capacity and workforce to engage with patients and carry out research, recruitment rates will remain low.
The UK is struggling to recover its clinical research portfolio compared to other countries
The latest COVID-19 impact report from Medidata shows that recruitment of patients to clinical research in the UK has continually fallen behind our European counterparts. The UK has made progress in August, whilst France, Spain and Italy struggle with a rise in COVID-19 cases, but it is clear that these countries are able to recover at a faster pace.
The UK is a global competitor for investment into clinical research and as recruitment activity in the UK stagnates, progress is made overseas which in turn damages the long-term investment prospects in the UK.
Improved visibility of clinical research
The RECOVERY trial allowed clinicians to quickly and safely test the efficacy of multiple treatments against COVID-19. This trial – delivered in the NHS – led to the identification of dexamethasone, an inexpensive and widely available steroid, as an effective treatment for COVID-19 patients, and has been estimated to have saved around one million lives.
Increased cross sector collaboration
NIHR in collaboration with the Recovery, Resilience and Growth (RRG) programme (through which the Future of UK Clinical Research Delivery paper was developed) have implemented a Managed Recovery process to help speed up the delivery of clinical research.
The RRG programme involves stakeholders from across the sector and has been instrumental in making progress on reducing clinical research backlogs. However, there is still a long way to go before the UK’s clinical research activity is back to pre-pandemic levels.
There is currently a myriad of issues that are impacting on the UK’s ability to deliver clinical research for patients. The biggest barriers to reducing clinical research backlogs are outlined below:
The Department for Health and Social care paper ‘The Future of UK Clinical Research Delivery: 2021 to 2022 implementation plan’ outlines a number of key action areas that will help to better deliver clinical research in the NHS, and ultimately reduce the backlog. However, in order to make progress we must first increase workforce capacity and further embed clinical research into the NHS.
Embedding clinical research into the NHS will help improve the quality of care delivered by Integrated Care Systems (ICS’s)
Clinical research is too often seen as an added extra that is less essential to the wider healthcare system. However, as the pandemic showed with trials such as RECOVERY, this is not the case. By embedding research into all parts of the UK’s health and social care system, patients will gain easy access to high quality clinical research and clinicians will be afforded more opportunities to engage and contribute to medical advancements in the UK. The opportunity is considerable and one that the UK is well placed to take with a single payer system and a new Health and Care Bill that encourages more collaboration.
This will require supporting the commitments made in the ‘Future of UK Clinical Research Delivery’ paper with a funding uplift for NIHR, but also further commitments to ensure that clinical research is a core feature and function of newly established ICS’s. There must be research representatives on both Integrated Care Boards and Integrated Care Partnerships to ensure a more joined up approach to care and clinical research. Furthermore, the new Health and Care Bill should mandate that Integrated Care Systems ensure that NHS organisations for which they are responsible conduct and resource clinical research.
There are over 24,000 people in the UK living with myeloma. Myeloma is not yet curable but it is highly treatable. It is a relapsing and remitting cancer which evolves over time becoming resistant to treatment.
On average 15 people are diagnosed every day, 5,800 people every year. It accounts for 15 per cent of blood cancers, and two per cent of all cancers. Myeloma mainly affects those over the age of 65, however it has been diagnosed in people much younger.
Despite significant advances in treatment and survival, myeloma remains a challenging cancer to live with and to treat. Common problems in myeloma include bone pain, bone fractures, fatigue, frequent or recurrent infection and kidney damage.
Treatment is aimed at controlling the disease, relieving the complications and symptoms it causes, and extending and improving quality of life. Surgery is not a curative option in myeloma. Access to the most effective new anti- myeloma treatment options are especially vital for myeloma patients.
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