I’ve thought long and hard about writing this, in a time where there are many opinions, a variety of views, very personal challenges and hardship and grief that can be all consuming regardless of what has been lost.
But I felt compelled. And it’s taken me a while to get it right…Oh and it’s a long one!
So many people have contacted me in the last few weeks, friends, family and some people I have not seen or been in contact with for a long time who know that I’m a nurse but not much else about my life. People have wanted to check in on me, because I’m a nurse, to see if I’m ok ‘out there’ and to express gratitude to me. I’m so grateful to people for thinking of me when there is so much else to be thinking of during this difficult time for everyone. I too am thinking of and sending gratitude and love to you all too and I hope this can give you better insight into what I do as a nurse for those who have been asking.
Peoples interest in me and my nursing journey has made me want to share some of my current story, situation and journey with you. They say the first year of nursing for a newly qualified nurse is the hardest, finding your way, building your confidence, understanding the system, the way. Learning to work collaboratively with a wider team and learning to believe that you can do this! I don’t think any of me and my September 2016 cohort were expecting to be on the frontline of a global pandemic within the first 6 months.
If you’ve ever read any of my nursing experiences along the way of my journey, you will know how incredibly proud I have been to be a nurse from the day my training began. And how when I qualified in September last year, I felt truly honoured to join this profession. I will never forget the first day of university, aged 34, sat in a lecture hall full of strangers, being quoted to from the NMC code, told not to get pregnant and basically when you’re out on placement, do the hours, all the nightmare shifts, always show up on time and don’t always expect to leave on time. No excuse is ever going to get you out of it – this is nurse life. Somehow, we all sat there and accepted this, and those that didn’t left. Being a nurse is a way of life that is just engrained in you from day one – you either accept it, embrace it, love it or you don’t. But either way it becomes who you are.
Fast forward 3 years and 6 months and we are all finding our way in the world. We have our precious NMC pin, a badge with our name above the word ‘Nurse’ – we’re supposed to know all the answers, our voice counts, and we make up the numbers. But most of all our patients rely on us. To be there for them, to get it right, to understand, to care and to do our best to ‘fix them’.
Last year it was announced that 2020, Florence Nightingales bicentenary year, would be ‘The year of the nurse and midwife’ it’s also 150 years since she was quoted as saying it would take 150 years to see the kind of nursing she envisioned. Florence was right, because here we are, nurses and midwives playing our part in getting us all through this crisis. I wonder if Florence ever imagined that people would be standing outside their houses clapping every Thursday at 8pm with all their neighbours and labelling healthcare workers as ‘Heroes?’
I wonder though also if she expected that with all the advances in modern medicine and technology that not only would we lose many of them to a cruel and all consuming virus, but also that those ‘heroes’ would be sent out to care for people in this modern day an age without basic protective equipment. That an already incredibly short and understaffed workforce would be made smaller by those taken ill and those forced to ‘self-isolate’ for a variety of reasons, some of which could perhaps be resolved with the availability of testing? And by those that need to be shielded for 12 weeks due to their own health and chronic conditions that they already battle with because…nurses are not invincible either, despite the hero label.
I knew from the start of my journey that I wanted to become a specialist nurse. I knew the acute settings and emergency medicine were not for me very early on. Whilst I value the incredible skills required daily there that I will never master or understand. I went into nursing to be with the patients…the people! It’s difficult because sadly the higher you climb in nursing the further you seem to get away from the actual patients! Whilst many of my younger comrades wanted to be embroiled in the fast pace of acute, emergency and critical care nursing I was drawn to working with people with more chronic and long-term conditions. People I could get to know, conditions that I could become an expert in, people’s lives that I could change by helping them to manage and being something consistent and reliable in their lives. At the end of my second year I worked in a surgical gastro ward where many of my patients had stomas and spent time with the stoma nurses and ended up writing my dissertation about the psychosocial implications of living with a stoma. Spending time with these specialist nurses just reiterated that this was the route of nursing I wanted to go down, and whilst I didn’t go into this specialism, I went straight into a specialist field even though many said I should get experience in other fields of nursing. I felt that at 37 I was ready to just crack on with what I wanted to do.
I now work in the community in Buckinghamshire as part of a palliative care service helping people in their own homes. Whilst it’s currently on hold, prior to ‘lockdown’ I had started studying for a key module for my role at Masters level to enable me to reach further in this specialism. This is because it’s a specialism that I am extremely passionate about, and one that has allowed to be the nurse I want to be because it allows me to spend more time with my patients and to have a truly holistic approach to their care.
During this corona crisis I have battled with both gratitude and guilt for where I’m positioned in my career. I’m so lucky that I don’t work in a hospital every day, that I’m not in protective gear for 12 hour shifts and that I’m not losing my colleagues to this virus. But on the flip side of this is the guilt. My friends, classmates and colleagues who are on the actual ‘frontline’. One of my nursing classmates who graduated 6 months after me due to having a baby started work on the very gastro surgical ward where I was so influenced by the stoma nurses and patients. Just two weeks after starting this ward then was transformed into a Covid-19 ward. Qualified for weeks with a one year old at home this was her new normal. My healthcare assistant friend that I did bank shifts with throughout my training whose department was closed, was redeployed to work in the mortuary – because sadly that was where they quickly needed an increase in staff. And that’s just two of them – two of my ‘heroes’.
They should be clapped for; they are really risking their lives every time they go through to door to their respective areas of the hospital. I’ve had sleepless nights where I have felt that this is what I’ve been trained for – that my entire final year was based around critical care, that the workforce is so desperately short, am I more needed there? Should I be considering stepping away from my specialism whether it be permanently or temporarily to help my classmates and colleagues and patients who perhaps need a nurse more?
But that is the ultimate question – who does need me more? If I am not caring for my patients in what is perhaps considered a less desirable area of nursing then what happens to them? Because I care for them, and I’m not necessarily ‘saving their lives’ does that make me less of a ‘hero’… or am I their hero? And the hero of the family they leave behind, someone who helped them in their most vulnerable moment and made sure they are treated with dignity and respect right until the end. Making the memory that those left behind will always remember, a memory that isn’t associated with pain, trauma or distress but peace, love and giving them the care that they have asked for and planned. Together.
I remember once walking with a friend in the hospital grounds and them asking me what ‘palliative care’ was when they saw a sign. I remember the look on their face when I tried to explain it. It was the same face my neighbour had when I told him about my new job and he continues to say ‘I don’t know how you sleep at night doing that job’, and that is because for many people when they hear the word palliative – they automatically think death and dying.
All my patients have life limiting conditions, many of them have cancer and then there’s those with non-malignant chronic conditions such as heart failure, COPD, renal failure and neurological conditions such as MND, MS and Parkinsons. Not all my patients are actively ‘dying’ but for all my patients there is no magic cure, but for some there is ‘treatment’ that can potentially lengthen or improve the quality their lives. All my patients are defined by the government as within the ‘vulnerable category’ and are to be shielded through strict isolation in the current climate.
This also means that many of these patients have had their hospital appointments cancelled, their chemotherapy put on hold. They are afraid to see a doctor about any ailments that they may encounter outside of their diagnosis. They are also aware that they are the people who will be low on the priority list in any emergency setting, they will be a potential choice against another for a ventilator, they are feeling like they matter less because they have already been given some kind of death sentence. They are unable to access services they normally do where they receive support and even our visits have been limited to avoid us infecting them with this virus.
And on top of that they have a specialist nurse who thinks she is more needed in the hospital – that she should be saving lives with her friends and classmates? That people shouldn’t be clapping for her because she cares for them? Does that mean they matter even less?
My only guilt should be that I could even consider leaving them. That I could even consider for one moment that other lives are deemed more important than theirs? Many of these people are on a time limit – time that they can now only spend inside – locked away, protected. No family can visit them, they are missing the laughter of their grandchildren, or the glass of wine with friends that allows them to escape.
The fear and anxiety that already burdens these patients is overwhelming, how long will they have? How will they fight? will they suffer? who will they leave behind? how will they deal with the financial implications? They already have one disease that is killing them, taking them away from everything they know and love and now they are highly at risk of contracting another one just by stepping outside their front door. Then there is getting their heads around the choice being made that perhaps chemotherapy or surgery is their only chance at a better or longer life, but the risk of death from Covid-19 just by going to get the treatment is higher. I spoke to the wife of one of my patients last week who feared that her husband may have to be admitted to hospital with an infection and she felt that if she took him to A&E that she wouldn’t be allowed to be with him and she would just have to drop him at the door. ‘When those doors close behind him I may never see him again’ because the virus may get him whilst he’s there.
And that’s the thing. The point of palliative care in the community is that these people have made a choice – a very important choice, that they want to avoid being cared for in hospital at all costs and more importantly they want to end their lives at home, not in hospital. That’s always been the most critical part if this service. Whilst we are working very closely with the hospital consultants and palliative care teams, the GPs and the district nursing teams, ultimately, we are keeping people out of hospitals – long before Covid-19 was even a thing.
Now that Covid-19 is very much a thing, keeping these people out of hospital is even more important, for them and for their wishes, but in also taking the strain off the NHS as much as possible. These people are highly likely to contract Covid-19 and if it takes their life it will also take their chance of saying goodbye to those that they love. We are hearing many stories of Covid patients and other end of life patients dying alone in hospitals. This is perhaps one of the largest aspects that has been long entwined in peoples fear of dying. To die alone.
I feel that I can consider myself a ‘hero’ therefore, for keeping someone at home so they are not alone in their final moments. So that they have a hand to hold, a familiar voice, the comfort of their home and someone who loves them.
We will start to see more Covid-19 patients at home for end of life, and those who are dying at home are not necessarily included in the ‘figures’ and with shortness of breath and changes in breathing often prevalent at end of life and no testing at home there is no way of knowing that these patients have Covid-19 or not? no way of knowing if the daughter who went to the supermarket for their weekly shop didn’t bring the virus home with the essential food? Therefore, people’s homes are not necessarily safer than the hospital for us as healthcare workers?
How we work as community nurses has changed and continues to change every day, to adapt to changing rules, changing numbers, changing policies. It’s new to everyone and sadly sometimes trial and error with dramatic consequences will be the only we learn how to navigate through this crisis on the whole. In my role I don’t wear a uniform and this was an important decision made to enable a more personal touch to palliative patients. It almost allows a closeness, some sense of normality that can be appreciated by patients who interact with so many healthcare professionals at so many different levels for different aspects of their care.
Something is lost in that now as we visit houses with plastic blue aprons, gloves and a face mask. Initially this was for patients with Covid symptoms in the household that was established through screening calls to all patients, and this is now the rule for all patients regardless and is to protect them as much as us. The personal touch and normal that we had therefore tried to create is now hidden behind this protection. Whilst we are lucky to have it, there is anxiety about it running out, and there is no room for being caught short out in the community as your ‘store cupboard’ is essentially the boot of your car. You have to enter the house with limited things – to limit spread – but should you then find you need something from your cars ‘store cupboard’ that then means de-gowning and then replacing the full PPE on re-entering the house.
Socially distancing in a stranger’s home is mostly impossible, we dress in our ‘armour’ on the doorstep and leave them with a plastic bag of potential infection.
Barriers are not just in place through contact, but also in communication, for those hard of hearing or those who didn’t realise they rely on lip reading, the spoken word can become somewhat distorted.
And even without words, a reassuring and sympathetic smile is covered by a mask, the hand of a dying patient is held by a gloved hand, there is no normality in that.
There are no hugs for grieving relatives, and you are unable to wipe any tears from your own face if you so much as dare to be personally touched by the loss also.
All this whilst knowing that the patient you have lost will only be able to have a limited number of people at their funeral, all of whom will be standing 2 metres apart. That the person who is left behind won’t be able to have visitors at their home or leave their home to visit family and friends for comfort and support. The nurses going into their homes may therefore be their only support and we continue to support those bereaved relatives long after their loss.
Enabling someone to stay at home until the end, whether they have Covid-19 or not, is so important. It always has been to be able to fulfil peoples dying wishes, but even more so at this time when hospitals are so stretched and there just isn’t space or beds for these patients, and the space available is so high risk. It takes a huge strain off the NHS as not only do these patients then not tip into hospital, but they also don’t have to call out the GP as we can be the middle-man and some of our nurses are also prescribers. Those requiring continuous medication via syringe drivers that need replenishing every 24 hours can be managed by us taking pressure off the district nurses.
Despite this I am not ‘employed’ by the NHS. Essentially, I work for a charity – but we work in partnership with our NHS employed colleagues to manage these patients and care for them at home. We also visit patients in nursing homes where staff are not trained in syringe drivers or are struggling to manage symptoms of palliative patients. There are 19,000 residential nursing/care homes in the UK compared to 1267 hospitals, just to give you an idea of how many patients there are in nursing/care homes and why it is so important that these settings are protected just as much as the hospitals.
The service offered by the organisation I am a nurse for is ‘hospice at home’, offering a 24 hour responsive service across two counties. Around 83% of hospice care is delivered in the community, and hospice inpatient units are limited with only 220 Hospices in the UK. Hospices are not fully funded by the NHS or government. Whilst the organisation I am a proud nurse for receive about 11% of our funding from the NHS, the rest is raised through fundraising, donations and our 28 charity shops and we are reliant on 1500 amazing volunteers.
A survey carried out by Hospice UK revealed that 82% of palliative patients said they wanted to die at home, but unfortunately 50% do die in hospital. However, hospices can reduce the number of hospital deaths by 20%, generating an £80m saving for the NHS. I therefore consider myself someone who works for and contributes to the NHS as well as knowing that as a charity we have to work hard to generate the income required to operate. Relying so heavily on fundraising which requires public events and gatherings and the ability to have our shops open means what we are able to raise to fund the service during this crisis is incredibly limited. In my opinion this shouldn’t be the case and these ‘charities’ are an essential part of the NHS, yet they are services not deemed by the government as important enough to subsidise regardless of Covid-19.
As a nurse I have always been incredibly proud to be ‘NHS trained’ and to have trained solely in NHS hospitals and to be a part of this, quite frankly, incredible organisation that has been so desperately underfunded and under supported for so long that it was in crisis long before Corona. Lack of PPE isn’t a new problem in my opinion, as a student I worked on wards that just didn’t have the stocks of the supplies that were required, and time was often wasted having to beg and borrow from other wards. It’s taken a crisis to pull on every ex-nurses’ heartstrings and encourage them back into the profession to help the people at the centre of their hearts – the patients. A profession that many of them left because they felt so undervalued and overstretched.
What Captain Tom Moore has achieved with his fundraising is nothing short of remarkable, it’s sadly also a reflection of the state of the NHS and where it lies in the governments priorities, and all charities like the vital one I work for are sadly a failure of the state to provide what’s needed. Regardless of Covid-19.
This pandemic has hit us all hard, life as we know it will be changed forever by it. The crisis has bought out the best and the worst in people and highlighted so many areas of our ‘system’ that drastically need improving. My only hope is that some small positive that may come out of this is that some of these things are addressed, especially with the number of lives that have been lost and the number of key worker lives that continue to be risked every day.
Thank goodness the first thing we learn as student nurses is to get up and show up no matter what because where would be now without that? Thank goodness ‘nurse life’ is engrained and that we are proud of our profession despite how undervalued and underpaid we have always been. Thank goodness for Florence and everything she achieved and thank goodness for all of us.
Thank all of you for clapping for us every week, for labelling us ‘heroes’ but ultimately we are just doing our jobs – we are ‘doing’ the life we signed up for, what we believe in, what we stand by. Nurses risked their lives and their health long before the Corona Virus. They prioritised their patients, they cared, they advocated, and they worked with whatever resources they had long before Corona Virus.
I guess I wanted to give some part of my perspective and I know it’s gone on a long time, but this is my view from the different aspect of nursing. I guess what I’m trying to ring home is that when we are all ‘set free’ and Corona virus is a memory in the history books that we shouldn’t forget this, what has been highlighted and what NEEDS to change. Whilst the ITU is the epicentre of this virus, and saving lives is paramount, nursing goes beyond that always. There are so many aspects of healthcare that we will all call upon and rely on at some point in our lives. Not all healthcare is delivered by the NHS. Public funded charities and care homes hugely contribute to the function and success of the stretched NHS which would no doubt be further at breaking point without this contribution.
I’m working on diminishing my ‘guilt’ for not having my hands on deck in the ‘epicentre’ because I know that my best work will be achieved here, in my specialism, the one that I chose because it’s special to me. The one I know my passion will shine through and allow me to help people in a wider sense. In an area of healthcare that in times of crisis may be forgotten, but one that actually should be highlighted by how much loss we are currently experiencing as a nation.
For myself and all my colleagues working in palliative care – we are in this for the long haul – with or without Covid-19 but this virus means that this field sadly will come into it’s own in the coming months. It has also highlighted the importance of only having one chance to get it right when it comes to death and dying. I am proud to be part of a team of amazing nurses who will support our communities as we grieve those lost and are there to stand by those who are yet to suffer loss.
Regardless of specialism I am so very proud to be a nurse, I’m proud of all my colleagues and I’m proud to be playing my role in the biggest fight my generation has ever encountered.
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