2020 has been an extraordinarily challenging year for North London Hospice. Here, our Medical Director Dr Sam Edward gives an insight into the challenges faced by our doctors, nurses and health care professionals during the pandemic and the enormous pride she has in the team, who, despite the odds, have kept our key services running.
The week prior to lockdown I was Acting CEO and I was aware of what was ahead of us. This was the first time in my career I had met anything like the pandemic. The situation developed rapidly and the rate of change was at times overwhelming. I was managing our planning whilst trying to deliver front line care too.
The biggest challenges we faced at the Hospice during the pandemic were around visiting and the safety of our patients, volunteers and staff.
Central to end of life care, is supporting people to have those close to them around them in their final days. For the last six months we have not always been able to do that and that’s been heart breaking for our staff and families. Even now visiting is restricted but it has eased and we’re learning to operate in this new way of life. We are constantly trying to strike the right balance between following guidance to limit contact and keep everyone safe whilst enabling people to be together and see their loved ones.
During the first weeks on our 18-bed ward we tried hard to admit as many patients as we could from hospitals to ease the pressure on the NHS.
In the community, many of our patients were shielding and it was a priority to find ways to maintain their support whilst keeping them, and our staff, safe. There was rapid change to our services and we introduced consultations by video and adapted according to preference and needs. We continued to visit people at home and also supported carers, patients and professionals with 24/7 telephone advice.
We’ve always had the desire to offer the best that was available on any level but actually, people were just grateful that we were still open and operating.
Highs & Lows
There were many highs and lows over the months of lockdown. Some of the stories and experiences will forever stick in my mind.
On our inpatient unit we provided terminal care for a patient whose wife had dementia and didn’t understand why she couldn’t be with him in hospital. He was referred to us for his last two days. We supported his wife and daughter and enabled them to stay with him. Constantly reviewing visiting helped us to be able to bring them together.
At the other end of the spectrum at the beginning of lockdown I was faced with an elderly couple that had been shielding and came to our Finchley site. He was dying and they really couldn’t manage at home any longer. They hadn’t been separated in 50 years and it looked like we had a little time so I had to tell her that for her own safety she couldn’t stay with her husband but that we would take good care of him. She was only able to visit him briefly. It was heart breaking. Moments like that make us very sad but I also have huge pride that we kept the hospice open and community support running, even when other services closed.
The issues over PPE were on the news daily, and we faced the same challenges with obtaining stocks as other healthcare providers. The stock wasn’t coming through and we were rapidly running out.
I remember the relief when we got our first national drop of PPE. It was long awaited but many of our orders had arrived without masks or aprons. It was really hard to see how we could keep going without this essential equipment. In that period we had no choice but to ask our community for help, and it was that generosity of PPE donations in those first weeks that enabled us to continue to support patients. I would like to whole-heartedly thank our communities who responded when we needed your help. For all the donations of PPE equipment and other things to help our staff keep going I will forever remain grateful. It reaffirms the special relationship that North London Hospice has with its supporters and communities.
The PPE has made communication with patients difficult. We realised how much we read through facial expressions. At NLH, doctors and nurses on our inpatient unit have a photo on our name badges to help show our faces more clearly. I tell patients ‘this is what I look like underneath the PPE’.
Along with this I am used to greeting people with a handshake or holding someone’s hand at the end of their life. For many it is the image so often shared in relation to compassionate hospice care. Sometimes people just need a hug, but of course we can’t do that now. The lack of physical contact creates distance that we’ve spent our whole careers breaking down and we just have to do it in other ways now. It’s taken me a long time to get used to this new way of being.
The priority overall has been to keep people safe – our patients and our staff. I asked myself regularly “have I done everything I can?”We were and are on the frontline. We inevitably had a lot of sickness and were lucky not to lose any staff, but we’ve come through the first six months.
I remember as the outset having a conversation with my husband as he worried for me but there was no question that I wouldn’t work. I had a duty of care to my patients and all our staff and volunteers and I needed to do all I could. Those are the ‘Duties of a Doctor.’ At the darkest time and in the planning phase I did revise my will. Now that I have had some time to reflect I know that the sense of pride I felt working as part of the medical and clinical teams at North London Hospice will stay with me my whole life.
There were times I feared for my family’s safety. I knew I might be bringing Covid-19 home and ultimately we did experience it as a family. I got sick, as many of my colleagues did. We were all trying to do our best to keep everyone safe but it did keep me awake at night. I wanted to be able to tell myself that we did everything we could do. I worked from home as soon as the fever passed but there were moments I had to dig deep to find the energy.
It is important for me to recognise that my husband and children have been amazing. I checked out of everything except work for months and my husband took over all the remote learning and caring for the girls whilst trying to keep his full time job going. I worked hard for the Hospice and for our Palliative and End of Life Care network for London.
At NLH our Chief Exec and Chair of our Board of Trustees felt it was important to let the families of its frontline staff know how valued they were so amongst other things they wrote a letter to each of them thanking them for supporting us to do our work. My girls and husband felt appreciated and I know I couldn’t have done it without them.
The learning curve has been steep – professionally, personally and as a team – and the transformation in the way we deliver our services has been huge. We’ve worked hard to put changes in place that keep people safe, such as uniforms, scrubs and screens, we can use video to conduct consultations and we have new ways to help with staff wellbeing. All care providers have also learnt the importance of individualised care, which has always been central to ourcare and is keyfor the future.
This situation is constantly evolving and equally fascinating as we continue to learn about a new illness and the impact it has had. And that’s the way I think it will be for some time to come.
I’d like to personally thank our supporters, staff and volunteers who have helped us keep going and stay open to support our patients.
Stay safe and keep going!