Joy Milliken, of St Margaret's Hospice, on the pandemic anniversary

Joy Milliken, clinical director at St Margaret's Hospice, has taken time out to give her thoughts on the past year.

Here's what she has written.

As we approach the first anniversary of the start of a chain of events that saw our lives change beyond recognition, I am reflecting on 2020 as a whole and sharing my hopes as we move into the spring of 2021.

Time to recover.

Like everyone, many of those close to me have had their lives forever affected by Covid 19. Friends and colleagues have fallen ill or have lost family to the disease, some did not have the chance to see each other or say goodbye. The impact of successive lockdowns has crippled our ability as a nation to come together to grieve – it’s a collective side effect that will take a long time to recover from.

I have seen the impact of isolation on my loved ones, both young and old, and I look forward with hope that I will, in the coming months, be able to see and hug my own mother again.

We all remember the sense of anxiety, which quickly turned to fear, as we began to witness on a daily basis images from China and then Europe, filling our TV screens last year. As the UK started reporting hospital admissions and deaths, all too soon we were as a nation, faced with decisions that at the time seemed incomprehensible. Isolation periods, social distancing and national lockdown brought our country to a standstill in the hope that the same effect would be had on this invisible enemy.

This year has meant that some of the most vulnerable people across our county have been ‘cut off’ from family, friends, the community and the health and care professionals who they rely on. But we have also witnessed a coming together in Somerset, like never before. The compassion within our communities has shone through, and continues to do so, with countless offers of help and support for those in need. And this outpouring of support has also extended to our health and social care teams, who continued to do their jobs, despite the risks that they faced.

Business as usual with the pandemic on top.

While we have all had to change how we live and how we work, the hospice teams at St Margaret’s have not once stopped supporting patients and families during the past 12 months. It has been business as usual with the pandemic on top.

St Margaret's Hospice

The teams have been here for those in our care throughout this challenging time, continuing to visit people in their own homes where safe, always mindful that we do not want to be introducing or increasing fear, anxiety or infection risks for anyone we are in contact with. Staff on our In-patient Unit have, like their colleagues in care homes and hospitals, been on shift every day, wearing PPE ensuring that they continue to provide the best care possible for patients, while supporting anxious families who may not be able to visit.

All of the clinical teams have had to work differently this past year. Getting used to putting on and taking off gloves, masks, aprons and visors, particularly during our very warm summer, was one thing, but being unable to provide someone with a reassuring presence, touch or a hand to hold was unbearable for us as care givers. And now, to ensure that patients, colleagues and their families remain as safe as possible, front line clinical staff are undertaking Covid testing up to three times a week to reduce any further risks to those in their care. It’s been relentless and exhausting for staff – but I am so proud of how they have stood up to the challenge.

New ways of working to meet new pressures.

We have learnt a lot about ourselves and the hospice this year, and what we can achieve in spite the challenges we all face.

Finding ways to support patients who can’t see their loved ones, and who might not have the opportunity to ask the questions they need to, has been important. Helping families to talk together about what is important to them and what they might want in place as they approach the end of their lives is something the teams feel is a key part of their role. To enable all of this to happen, when it might not be possible face-to-face, has seen us help patients and those close to them, to use more video calls and telephone calls on loudspeaker.

Our teams have seen more families struggling during lockdown and there have been more concerns raised directly and via the 24/7 adviceline, regarding domestic abuse, personal neglect and the mental health of patients and those close to them. The wider team has stepped in and has often taken the lead in tackling what matters most to the patient, filling the gap between what is an expected health service responsibility and what makes us human and compassionate.

One individual who was approaching the end of his life, was incredibly upset and worried, because all he wanted was to be buried with his parents – nothing else mattered to him – his complex health needs that were impacting on his personal care and symptom control were secondary to him. This man had no one close to him and illiteracy meant that he did not know how to make his wishes a reality, leaving him lost and confused. With the help of the team at St Margaret's they were able to find out the details of the patient’s wishes and reassure him all was in place. This meant this gentleman could concentrate to improving his physical symptoms, with support from our 24-hour adviceline and practical care at home towards the end of his life. This meant he died with dignity knowing that his wish to be buried with his parents would be met.

The pull on our bereavement and family support teams has also increased, with more and more families who, due to covid, are now struggling to come to terms with the loss of loved ones. Our teams have responded, and with the support of trained volunteers have met that need and continue to be here ready to help where they can. We fully expect the impact of this pandemic to take its toll on people for many years to come, but we will continue to be here to support our community.

Kindness is the backbone of our communities.

As more of the country receive vaccinations and all of our teams progress their ‘roadmap’ out of the pandemic, I am humbled by the way in which everyone has continued to keep patients and their families at the centre of what they do. And even while we were in the midst of restrictions we have continued with the ‘day job’ recruiting, training and ensuring we have capacity to meet demand and the growing need for our services. We have welcomed new staff to the hospice and thank them, alongside all our staff and volunteers, for truly going the extra mile during this time.

Some of the changes that have had to be put in place have not always been comfortable for staff or those in our care. We are not used to caring with restrictions on who and how we can visit, or limiting visitors for those in our care in our In-patient Unit, but as we move with hope, we must continue to be compassionately vigilant and risk aware.

I am thankful that ‘love and kindness’ are still the backbone of our communities. The support shown to St Margaret’s Hospice has been overwhelming, from small acts of kindness shown to staff, to donations of PPE to keep staff safe and able to care for patients, to donations of help for patients and families right through to the financial support we have received.

The community spirit across Somerset is to be celebrated and we have forged some very strong links in different parts of the county that patients and families have been able to benefit from already, this we will continue to support and nurture where we can.

I along with the whole St Margaret’s family, and the nation as a whole, will reflect on the tragedies of this past year, thinking of all of those who have suffered loss and separation during this time, standing together with those who are struggling or grieving. Going forward we are anticipating that the need for all of our hospice services is going to increase and we plan to be there with help, care and support.

While we have been fortunate to have received additional grant funding this year, including from the NHS, it has been a very welcome but temporary stop gap. This funding will not continue and it means we face an uncertain future, where we will be recovering for some time from having shops shut and public fundraising cancelled for the best part of a year. We will need to rebuild financially as well as physically and mentally as a hospice. Now is the time for us to come together both to reflect as well as start our recovery, and I know the people of Somerset will stand beside us and help to ensure that St Margaret’s continues to be here caring for our community.

Joy Milliken, Clinical Director.

March 2021.