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.
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.