Written evidence submitted by Janssen (CBP0050)
There are significant challenges in a range of chronic conditions because of the pandemic that have resulted in backlogs for patients and require greater attention from the Government and the NHS. While the pandemic has driven novel approaches to healthcare there is a need to drive further improvements to patient pathways so that backlogs are reduced, and effective treatment and management is put in place.
At Janssen, we’re creating a future where disease is a thing of the past. We’re the Pharmaceutical Companies of Johnson & Johnson, working tirelessly to make that future a reality for patients everywhere by fighting sickness with science, improving access with ingenuity, and healing hopelessness with heart. We focus on areas of medicine where we can make the biggest difference: Cardiovascular & Metabolism, Immunology, Infectious Diseases & Vaccines, Neuroscience, Oncology, and Pulmonary Hypertension. Janssen-Cilag Limited is a Janssen Pharmaceutical Company of Johnson & Johnson. Learn more at www.janssen.com/uk.
Focus of our response
We recognise that pent up demand and backlogs for healthcare services in the NHS is a concern for many individuals, regardless of the condition or symptoms. Our response to the inquiry is focussed on a range of chronic conditions that we feel are often overlooked relative to others in the NHS. These include a range of conditions in dermatology, gastroenterology, and rheumatology. Immune-mediated conditions including plaque psoriasis, inflammatory bowel diseases (IBD) and psoriatic arthritis are long-term relapsing remitting diseases with significant morbidity and no current cures. As well as the significant burden on the individual and their support network there is also a significant burden on the NHS if these conditions are not managed effectively.
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?
Waiting times for dermatology, gastroenterology, and rheumatology have been increasing over the last year. Consultant-led Referral to Treatment (RTT) Wait Time data published by NHS England indicates significant increases in pathway waiting times over the last year[i].
It is important to note that within some of these disease areas there is an impact from urgent referrals for suspected cancer. This is particularly acute in a specialty like dermatology where there is a focus on providing urgent access to those with suspected melanoma. While it is crucial these patients are seen it hides a much worse picture for all other dermatological conditions that are in turn de-prioritised, resulting in patients with these conditions waiting longer.
Analysis by Carnall Farrar[ii] (CF) looking across a range of conditions (rheumatoid arthritis, asthma, psoriasis, diabetes, Parkinson’s disease, and inflammatory bowel diseases) in earlier phases of the pandemic showed that new and existing patients in England with long-term conditions have been negatively impacted by the COVID-19 pandemic across the patient pathway – from presentation in primary care, timely referral and diagnosis, and treatment/management. They note that COVID-19 will not have delayed the onset of new cases, with challenges driven by patients being diagnosed later with more severe disease and poorer outcomes. CF’s modelling suggests for the six long-term conditions investigated a total of 124,000 patients in the UK are estimated to be missing from the healthcare system. They further note that the rise in years lived with disability because of late diagnosis is estimated at 4,500 years, an increase of 47%. They conclude that this could result in additional years of suffering experienced by patients, and higher healthcare costs associated with management. We also know from surveys undertaken by charities that care has been impacted by the pandemic. For example, a survey by Crohn’s and Colitis UK[iii] showed that over a quarter of people with IBD (26%) haven’t been able to speak to their IBD team during the pandemic, or it’s taken longer than usual. Also, the survey showed that almost 1 in 5 people had a flare of their IBD because they were unable to access health services.
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?
There are well documented workforce capacity challenges across a range of medical specialties[iv] [v] [vi] and primary care that are limiting the ability to deal with the current backlog. These workforce challenges have been exacerbated by the pandemic with a knock-on impact on patient care and backlogs. In some specialties, for example dermatology, we know there were challenges accessing specialist care pre-pandemic. In looking at the backlog and approaches to address it there is a need to focus on both presentation and referral in primary care and the consequent access to specialist input for diagnosis and treatment. There are clearly challenges across the pathway, but it is vital to free up time from specialists for diagnosis (including relevant procedures such as endoscopy in IBD) and treatment initiation. Following treatment initiation there is potentially a greater role for specialist nurses in dermatology, gastroenterology and rheumatology for ongoing management provided capacity is made available in job plans. Increased use of non-medical roles and leveraging technology is likely to free up face to face outpatient clinic time for ‘hot’ patients and those newly referred. Ultimately, pathway improvements could support more effective diagnosis and management. This must include effective triage and stratification so that early and effective treatments can be provided to patients. There is also an opportunity to create capacity in the system through Getting It Right First Time (GIRFT) approaches in a range of specialties[vii]. If the patient can access the most appropriate treatment (eg. reduced monitoring, better side effect profiles), it is likely to reduce healthcare resource utilisation and create capacity for clearing the backlog even if acquisition cost may be higher. More effective disease management will ultimately improve patient outcomes, reduce resource pressures for the NHS and generate wider benefits to society and the economy.
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?
Short term financial investment is required to address backlogs in all specialties through appropriate use of triage and waiting time initiatives. It is important that NHS initiatives such as the elective care recovery fund can prioritise for both the short term and medium-long term. It is also important that the system has an adequate focus on long term conditions in dermatology, gastroenterology, and rheumatology as well areas such as cancer and elective operations. Recovery investment should be structured in such a way so that all patients & associated specialties can benefit equally. Rising RTT data indicate that there are currently inadequate levels of investment and capacity to meet demand.
How might the organisation and work of the NHS and care services be reformed in order to effectively deal with the backlog, in the short-term, medium-term, and long-term?
What positive lessons can be learnt from how healthcare services have been redesigned during the pandemic? How could this support the future work of the NHS and care services?
The NHS response to the pandemic has driven faster uptake of digital (non-face to face) interactions. This should be welcomed as a positive development for patients and healthcare professionals. However, these kinds of patient-clinician interactions are not appropriate in all contexts and can be a barrier to effective diagnosis. Appropriate triage must be implemented to ensure the most urgent patients are seen first. It is important that there is improved integration of services and diagnostic tests/monitoring, including a role for primary care in advance of referrals or reviews, so that patients are initiated on treatments faster. We also know there are significant challenges in diagnostic procedures such as endoscopy which can limit effective diagnosis in diseases such as IBD. The pandemic saw increased use of telemedicine in dermatology to visualise the skin remotely. These approaches can free up capacity and should be welcomed but it is important that adequate technology and infrastructure is in place in healthcare settings and that digital inequalities do not exacerbate health inequalities. These approaches offer opportunities for re-prioritising access to specialists for non-life threatening/non-cancerous conditions in dermatology for example[viii]. More broadly there is an opportunity for close collaboration between NHSx and ICSs on digital best practice nationally in a range of specialties[ix] [x] [xi]. In the longer-term remote monitoring through wearables and app-based PROMs can be embedded into ongoing management. This will support patients in taking greater control of their disease management and empower healthcare professionals to intervene during disease flares. Finally, alternative routes to access treatment should be pursued. For example, greater use of community or homecare administration for medicines could in future free up capacity in hospital settings while also providing convenient alternatives for patients. Homecare services provided by pharmaceutical manufacturers might also offer further opportunities to engage with patients remotely with homecare nurses undertaking wider roles such as treatment audits, symptom checks, triage recommendations. Additionally, alternative medicine formulations to IV infusion can be used where appropriate, such as self-administered sub-cutaneous injections or those orally administered. However, it is important to note that there are current challenges in homecare capacity that is limiting both treatment initiation and ongoing administration in parts of the country.
What can the Department of Health & Social Care, national bodies and local systems do to facilitate innovation as services evolve to meet emerging challenges?
There is an opportunity with the establishment of Integrated Care Systems to drive for pathway redesign at all levels of the system that ensure patients receive the right treatment as quickly as possible. This must include adequate preparation for potential future waves off the pandemic or other pressures on NHS services. At a broader level there is an opportunity to leverage healthcare data across systems and providers to improve disease management, including the integration of patient generated data. It is also vital that there is improved routine access to cost-effective treatments and that the NHS proactively promotes the uptake of innovation.
[iv] RCP 2019 Census https://www.rcplondon.ac.uk/projects/outputs/medical-workforce-bc-covid-19-2019-uk-consultant-census
[v] British Society of Gastroenterology 2020 Workforce report https://www.bsg.org.uk/workforce-reports/workforce-report-2020/
[vi] British Society of Rheumatology Workforce Policy Report, 2021 https://www.rheumatology.org.uk/Portals/0/Documents/Policy/Reports/BSR-workforce-report-crisis-numbers.pdf?ver=2021-06-16-165001-470
[vii] Rheumatology GIRFT National Specialty Report https://www.gettingitrightfirsttime.co.uk/wp-content/uploads/2021/08/Rheumatology-Jul21h-NEW.pdf
[viii] NHSx Dermatology Digital Playbook https://www.nhsx.nhs.uk/key-tools-and-info/digital-playbooks/dermatology-digital-playbook/dermatology-pathway/
[ix] NHSx Gastroenterology Digital Playbook https://www.nhsx.nhs.uk/key-tools-and-info/digital-playbooks/gastroenterology-digital-playbook/
[x] NHSx Mental Health Digital Playbook https://www.nhsx.nhs.uk/key-tools-and-info/digital-playbooks/mental-health-digital-playbook/
[xi] NHSx MSK Digital Playbook https://www.nhsx.nhs.uk/key-tools-and-info/digital-playbooks/musculoskeletal-digital-playbook/