Core NHS services during the pandemic: Latest report from Parliament and what happens next

On 1st October, the House of Commons Health and Social Care Committee published its report into NHS core services during the pandemic. The report looks at how normal NHS services have been impacted by the need to care for COVID-19 patients and prevent the spread of the virus in healthcare settings. We submitted evidence to the committee based on what over 1,300 people with RAIRDs told us in a survey about their experiences of pandemic. 

RAIRDA was cited by the committee as one of the many organisations which gave evidence indicating how unclear and confusing shielding guidance and advice had been in the initial wave of the pandemic.

The committee’s report also notes the need for clear communications between medical teams and patients about how people’s care has been changed and disrupted due to the pandemic. Simon Stevens, the head of the NHS in England told the committee in August that they have instructed that: “[NHS] trusts working with GP practices should ensure that between them every patient whose planned care has been disrupted by COVID receives clear communication about how they will be looked after, and who to contact in the event that their clinical circumstances change.” This is important for people with RAIRDs, whose conditions can flare and progress without warnings, and who may require support from hospital-based specialists rather than just their GP.

We would have liked to have seen more mention of chronic or long-term conditions in the report. Whilst these are often not seen as an emergency, the reality is that delays between appointments and late diagnosis can have serious consequences for patients with chronic conditions. Treatment options may not ‘cure’ chronic conditions like vasculitis, lupus, sjogren’s and scleroderma but we know early treatment can help patients live better lives and prevent serious complications. 

There are four main areas relevant to people with RAIRDs where the committee asks the health service to take action:

First, the committee has asked NHS England to report back on what steps it is taking to deal with the backlogs caused by the pandemic and measure these. Moving forward, we will make clear that disruptions to the care of people with chronic conditions, like RAIRDs, need to be captured by any assessments of how NHS services have been disrupted by the pandemic. Relying on more common metrics, like waiting times for cancer treatment or the number of people waiting for elective surgery, risks missing the many people who have had necessary monitoring appointments cancelled or that people who needed help have struggled to access it. When we surveyed them in late April and early May, 1 in 3 of the people with RAIRDs who said their care had changed or been disrupted said it had already affected their ability to manage their conditions. 

Second, we look forward to seeing the health service’s assessment of how telemedicine can be used and has been used well. We know it can be very beneficial, helping patients avoid long journey’s to specialists, but we also know that it cannot replace physical appointments when tests or procedures which can only be performed in hospital are needed.

Noting the actions taken already, the committee asked the NHS to review how patients are communicated with about both their care and their level of risk during any future spikes and ensure that patients are treated with “dignity and compassion”. We welcome this, as a number of patients felt they had been “abandoned” during the pandemic. 

Comments received through our April-May 2020 survey. Small edits have been made for clarity.

Finally, the committee asked for clarity on when weekly testing for NHS staff will be implemented. Regular testing for NHS staff will give vulnerable patients reassurance about accessing services, as well as preventing the spread of the virus in general.

Overall, this is a very important report for the NHS in England as we go into the winter. We hope the devolved nations will undertake similar actions. We will continue to work to make sure the needs of people with RAIRDs are addressed in work like this.

We also submitted evidence to the Welsh Senedd’s Health, Social Care, and Sport Committee’s inquiry on COVID-19. Whilst this covered the impact of COVID-19 on core health services, it also covered issues like PPE and contact tracing and so cover these issues in less depth than this inquiry on services in England.

What we’re doing now

RAIRDA will soon be holding a roundtable with patients and clinicians to look at how we can alleviate the problems identified in our recent report and those that patients continue to raise with us. We hope this discussion will provide the basis of a policy paper with useful recommendations for the health service going forward. The health service is likely to go through a period of redesign over the coming months and years and we will be feeding in wherever possible to make sure this supports people with RAIRDs. We hope to have more news in the future about how people with RAIRDs can get involved in, and support, our work.

Joint statement on rise in COVID-19 cases in the UK

Continuing care

As COVID-19 cases, hospitalisations, and sadly deaths, begin to rise we know that many people with rare autoimmune rheumatic diseases (RAIRDs), such as lupus, scleroderma, Sjögren’s syndrome and vasculitis will be concerned about the continuing care for their condition.

The consequences of disruption of care for these conditions can be serious and much of the care patients need cannot be done remotely. For example, for some people, physical monitoring tests are the only way to detect organ damage and potential disease progression.

Despite new connective tissue and vasculitis patients being regarded as a priority in NHS guidelines, the first wave of COVID-19 saw widespread disruption to peoples’ care as many clinicians were deployed to treat those seriously ill with COVID-19. 80% of people with RAIRDs had already experienced a change or disruption to their care by mid-May 2020 and 1 in 3 of these people already felt it had impacted their ability to manage their condition. Some told us they had appointments moved back by over a year, were still waiting for test results or to start treatment, or that they were reluctant to ask for help to manage a flare. When asked to comment in their own words about the issues that mattered to them, it was deeply alarming that many said they felt “abandoned”. Over summer we have continued to hear from people who are struggling to access the support they need.

The line between essential and non-essential care and support is also hard to draw with these conditions – damage can be asymptomatic before it becomes irreversible and if escalating flares are not dealt with early, people can become critically ill.

So far, we understand that clinicians and health service leaders are determined that services will not be disrupted during any future rise in cases to the extent they were during the spring, nor do they want patients to be discouraged from seeking help due to their concerns about COVID-19. In some areas, there are plans to keep some hospitals COVID-free whilst in others, rigid infection control will prevent transmission in hospitals.

We welcome this and hope the health service will be supported to achieve this continuity of care in the coming months. Clear communication with patients about when and how they should seek help, ensuring COVID-19 hospitalisations remain low, and giving clinicians the support they need to run services effectively will all be crucial.

Shielding

We understand there is a recognition in government and the health sector that shielding was an extremely difficult process and there is no sign of a return of nation-wide advice to shield yet.

If cases continue to rise, it is important that there is support for those people who are at high risk and wish to shield, such as access to the job retention scheme for those who cannot work from home and clear directives for employers. It is also important that patients have as complete an understanding of their risk as possible so they can take the steps they feel are appropriate to protect themselves.

Data from Public Health England on where cases are concentrated may also help patients make judgements about what activities they feel comfortable undertaking at the current time.