When COVID-19 started making appearances on the news in late 2019, nobody could have predicted the effects it would have the following year. At the advent of the lockdown, it became apparent that the whole world would be thrown into turmoil – but for some groups of people it has hit harder than most.
For those living with cancer, and their loved ones, it’s been even more challenging. Many of these people are undergoing treatment, meaning they have weakened immune systems, and have had to make difficult decisions over whether to continue treatment and increase their chances of getting the virus, or postpone it and risk progression of their cancer. The psychological effects have been palpable too; having to stay isolated within their own four walls and trying to deal with their cancer diagnosis has been incredibly difficult.
The day-to-day lives of charities and health professionals have been upended too – with sacrifices that needed to be made across the board to prepare for the expected influx of COVID-19 patients.
We reached out to three of our contacts to find out how they’ve been getting on as the pandemic has developed. Simon Bolton, a mesothelioma clinical nurse specialist, Sandra Dixon, a specialist thoracic surgical nurse and Emma Johnson, the Chief Executive of St. Leonards Hospice took the time out of their busy schedules to talk to us.
Chemotherapy and COVID-19
Simon is a specialist nurse for Mesothelioma UK. He also helps those who are affected by mesothelioma through his information and support group, MESothelioma Support Yorkshire (MESSY).
Simon, thanks for talking to us. What were the initial worries for your patients when COVID-19 first made an appearance?
At the beginning, there was a real concern that some groups of patients wouldn’t be offered systemic treatments, such as chemotherapy. This was for two reasons: the groups needing chemotherapy were also a very high risk group for contracting the virus; and also because we weren’t sure if hospitals would have the capacity to treat everyone, as they prepared for a possible tidal wave of COVID-19 admissions to the hospital.
How did that work out in the end? Did anyone have their treatment withheld because of the virus?
Thankfully, we didn’t have to withhold or withdraw any patient’s treatment because of capacity issues. New clinical trials have taken a hit though, and some existing trials have needed to temporarily stop recruiting new patients.
Has COVID-19 impacted how patients access treatment?
Anyone who is considered for chemotherapy needs to be carefully assessed, as this kind of treatment does have potentially life threatening side effects. If the patient contracts the virus while they’re receiving treatment, this could further increase the chances of coming to significant harm as a consequence of that treatment. It’s really important that oncologists discuss this with their patients as part of the consenting process.
Because of the number of COVID-19 cases, some people might think hospitals aren’t a safe place to be. How would you respond to that?
As the weeks and months have gone by, hospitals have become safer places. All staff are wearing masks, and in some settings even more PPE. This keeps both them and their patients safe. Tests are done for patients coming in for invasive procedures too, which means there’s less chance of coming into contact with someone harbouring the virus.
That said, hospitals are no different to other places in reality, and can’t be guaranteed to be completely free of the virus. The safest place to avoid the virus is in isolation at home. Unfortunately if you have symptoms of an asbestos-related disease (ARD), or you’ve already been diagnosed, there’s a risk of the symptoms worsening by staying at home and not receiving treatment.
The situation with surgery
Sandra is a thoracic surgical nurse specialist at Leeds Teaching Hospital, working with the team to support patients that need to undergo an operation as part of their treatment.
Hi Sandra – thanks for talking to us. Has COVID-19 changed the way surgeries are done for cancer patients?
The NHS made some dramatic changes in an attempt to contain the spread of the virus – which resulted in changes to the way cancer is managed. The capacity for surgery was greatly reduced, as theatre space and ventilators were repurposed to increase intensive care bed capacity in preparation for the surge in demand.
The changes resulted in limited capacity to offer curative and diagnostic surgery. For some patients this regrettably led to delays, and the potential risk of disease progression.
What are some of the knock-on effects of the lockdown that don’t immediately spring to mind?
The increased potential for disease progression definitely exacerbates anxiety in our patients. Lockdown evoked a range of emotions for everyone – anxiety, low mood, stress, sadness, fear, loneliness, and frustration. For cancer patients, those feelings are amplified because they don’t know the impact it will have on their lives. Some patients were reluctant to come to hospital for surgery in case they caught the virus – this fear being even greater than the fear of the cancer itself.
What processes have been put in place to help lower the risk of getting the virus?
Surgical cancer care has had to adapt to limit the amount of time patients spend in hospital, and try to minimise face-to-face contact.
Patients are being offered phone and video consultations for their pre-treatment meetings and follow-up appointments. Though this helps some patients that are relieved to not meet in person, there’s a risk that some patients are being excluded if they don’t have internet access, social media resources or don’t have the technical knowhow to use video calls. Other processes such as adhering to PPE guidelines, screening for COVID-19 prior to surgery, and 14 day self-isolation both pre-admission and post-discharge have been put in place to help protect patients from getting the virus.
It’s been six months now since the lockdown started. How are things for patients now?
It continues to be a difficult and distressing time for patients and their families. Many psychological support services have had to be reduced and aren’t as accessible, and the suspension of visitors for patients have made it harder to cope with having cancer and facing admission into hospital for surgery.
With a steady increase in the number of people testing positive for COVID-19 we're now facing a second wave. Capacity for surgery still hasn't returned to pre-COVID-19 levels and with winter pressures, the next few months could be challenging. However, we have robust processes in place to ensure our service can continue, and help keep our patients safe.
Caring through the challenge
Emma Johnson, Chief Executive, is part of the incredible team at St. Leonard's Hospice that supports patients and their families with end-of-life care.
How has 2020 been different from what you’d expected?
It’s been a year of uncertainty and challenge the likes of which we’ve never seen or experienced before.
When we planned our 35th birthday celebrations, our calendar was full of events to engage and excite our local supporters. We’d hoped to raise the profile of the Hospice as a local charity, and to thank the thousands of people who have supported us in the past, and continue to support us now.
How did the lockdown affect the way St. Leonard’s Hospice works?
In just a few short weeks, our entire year had been turned upside down. We were faced with immediate loss of income, closure of all our fantastic shops, cancellation of our events, and we had to stop all volunteering to protect the health and wellbeing of our patients, staff and volunteers.
While we were facing the challenge of balancing our books and keeping our doors open, we were also working alongside our Clinical Commissioning Group and NHS colleagues to identify and get into action a clinical response to the COVID-19 crisis and the anticipated huge numbers of patients who may have needed our care.
How did you manage to keep supporting your patients?
To support as many patients as possible, we partnered with colleagues at the NHS Trust to increase our capacity to provide care in people’s homes with our Hospice @Home service. We also launched a new support line for those who have been bereaved. We’ve continued to care for patients in our In-Patient unit, balancing the very restricted visiting rules with the need to ensure our patients have contact with their loved ones.
Have things become any easier since lockdown started to ease?
We were able to open our shops in a phased way, and we’d like to continue to do this during coming months. The safety of our customers, staff and volunteers is paramount, so we’re continually reviewing legislation and guidance to keep everyone safe.
What does the future look like for St. Leonard's?
Our future focus is to build on the foundations that have been set over the last 35 years, to make St. Leonard’s Hospice fit for the next 35 years. We want to support more people and increase our reach to allow as many people as possible to benefit from our care and expertise. We’ll need innovation, collaboration and strong financial management and income generation to keep our momentum.
Is there anything you’d like to say to your supporters?
We’ve been truly humbled by the support shown to us during this time. Our #Unite+Protect campaign that we launched in March to raise money and protect the Hospice’s future continues to be successful in bringing in donations that are vital in maintaining income to pay for patient care.
As a charity for local people, St. Leonard's Hospice has always benefited hugely from the generosity of our local population. We’re in a strong financial position but that doesn’t mean we can take our eye off the ball or that we don’t need continued support from the people of York and surrounding areas. We still need to raise millions of pounds each and every year to maintain our services and to be able to progress our future goals to support more people.
Our loyal supporters have never been more important to us than they are now. On behalf of our patients, families, staff, and volunteers – thank you for your continued support.
Find out more about St. Leonard's Hospice
Look after yourself
Despite the daily challenges caused by COVID-19, the NHS sees thousands of people on a daily basis. Don’t delay in seeing your GP if you have any symptoms as early diagnoses can be critical.
Thank you to our three guests for sharing their honest thoughts during these challenging times. We’ll check back in with them next year, where we hope the outlook is a brighter one for everyone.
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