January 21st, 2021.
Article by Hannah Fellerman
Welcome to this month’s article.
First of all, I hope you are well and have had a good start to the new year.
The UK is currently under another required lock down to help combat the covid-19 virus.
Sadly, countless lives have been lost around the world as a result of this pandemic, and it’s definitely not something which should be taken lightly, especially now that new strains of the virus have appeared. Global death rates have risen extensively and the amount of cases I am personally hearing about on a daily basis is extremely sad to say the least.
At the same time, many lives have deteriorated and also been lost due to the unfortunate consequential neglect of those suffering from chronic conditions which require regular or urgent care.
The aim of today’s article is to bring some focus to the chronically ill patients who have been suffering due to the pandemic.
If you would like to contribute to our blog, please email us with the subject “guest writer” to email@example.com with some detail about yourself and your writing experience (all experience levels welcome).
Take care and enjoy the article!
The Neglected Patients Of The Pandemic
As someone who has a close family member with chronic health conditions (an uncommon digestive condition as well as an autoimmune condition amongst others) which require regular in-patient hospital treatments, I have observed how the pandemic has taken a toll on our medical system and therefore, the patients who rely on it for their survival. Their most recent hospital stay for life-sustaining treatment has been delayed until further notice.
Meanwhile, they are struggling to manage their health conditions and have lost a total of 19kg (42 lbs) in a year and a half; the majority of which could have been avoided if they were able to receive their treatment last year. In the last three months alone, over twenty phone calls have been made to chase up the situation. Countless call back’s have been promised, and only after three months they received a letter stating that the hospital wards are overrun with covid patients and they will be considered first priority as soon as the situation changes. Meanwhile, they are trying their best to utilise tools and techniques from home to manage their health as best as they can.
Similarly, a friend of ours has been waiting for nearly a year for gall-bladder surgery. In 2020, they were hoping that the NHS would be able to take them in for the procedure. However, because they are also diagnosed with autism and myalgic encephalomyelitis (ME) they have been told that the surgery cannot be accommodated as they cannot provide a side room. Patients with autism and ME require separate facilities due to the sensory overload which would occur if they were situated on a bay with other patients.
The pandemic has meant that they are also still waiting to be called in. They have enquired for a private procedure but private hospitals have given our friend the same answer that the NHS has given them. Meantime, our friend is suffering immensely with their health. They were already on permanent bed rest due to other pre-existing conditions, but on top of this they are dealing with an extremely limited diet (as fats cannot be digested) so as you can imagine, weight and energy levels are severely low.
It saddens me to read many similar stories like this in the news. At the time of writing, numerous urgent cancer operations have been cancelled (BBC), as well as others in the last two months alone (Evening Standard).
The magnitude of the covid-19 death and infection rates (GOV.UK) should in no way be disregarded, but at the same time I believe our attention should equally be focused on the chronically ill individuals who have needed access to medical professionals and treatment prior to the first reported case of covid-19 in December of 2019, and who will continue to need this access.
I evaluate that this issue, in reference to the UK’s health system has unfortunately not received much coverage in the media, nor has there been a concentrated effort in coming up with a solution.
The situation we are faced with poses the question; why and how were we not prepared for this?
It is estimated that 15 million people in the UK suffer from long term health conditions (Kings Fund). This also includes rare diseases, which around 3 million people have (Genomics England).
In March 2020, a report from the University of Oxford highlighted that patients with long term conditions (LTCs) have been neglected somewhat during national emergencies. The report stated that poor planning and management before and during national emergencies were two of the core reasons behind LTCs neglect. They also provided a link to a document providing guidance to medical professionals published by the Royal College of General Practitioners in response to the covid-19 pandemic (read more).
Yet, in May 2020, early insight into the impact that the covid-19 pandemic was having on chronically ill patients found that there was already a significant reduction in access to appointments, and treatments being postponed (The Health Foundation). At this point, stress levels due to this frustration would have likely been exceptionally high, causing further harm to these patients’ health.
Professional advice given was to avoid stepping foot into GP surgeries and hospitals to prevent catching the virus. But the reality is that urgent medical care for non-covid patients was and still is in desperate need.
Advice pertaining to urgent care was that individuals shouldn’t hesitate to contact their GP or dial the 111 NHS helpline. Getting past any initial phone call (if answered) was highly unlikely due to the fact that by and large, the main bulk of procedures and treatments which were provided would be in relation to covid-19. Efforts have been made to make other services remain available, but sadly, data from December 2020 shows that the majority of these services have had to be reduced significantly and many planned hospital treatments, cancer treatments and other medical emergencies were unable to be carried out (The Health Foundation).
Medical patients who endure chronic health conditions (including but not limited to; different types of cancer, digestive issues and auto-immune diseases) have to become used to the limits which their conditions bring upon them. Some limits may include a restrictive diet, bed rest, medication and frequent trips to doctors and hospitals.
Chronic health conditions vary in level, frequency and type of treatment. Some individuals require long-term hospital stays whereby without them, they are seriously compromising their recovery or stability of health. In some cases it is a matter of life or death. Needing to stay within the confines of a safe, medical environment for a particular length of time is essential for their survival. Others may not need long-term hospital stays but do still require procedures or treatments to take place inside a hospital or clinic setting.
The one thing we must avoid is chronically ill patients contracting covid-19. Death rates are twelve times higher in patients who suffer from a chronic illness (PBS). It is therefore extremely sensible not to let chronically ill patients into hospitals where the majority of wards are being used to treat covid patients. At the same time, leaving them alone at home with no other alternative is in my view, completely irrational.
This brings to mind the following; why wasn’t the assurance of separate facilities for chronic medical patients provided since the announcement that covid-19 had become a pandemic? Was it because our government and our medical industry did not think the pandemic would last long enough to necessitate this? Or was it because of lack of funding, lack of space, lack of staff, or all of these components?
In a medical study carried out across twenty one industrialized countries including England, Wales, France and the Netherlands; it was found that there was a significant increase in deaths from all causes from January 2020 to May 2020 directly related to the first wave of the covid-19 pandemic. Belgium, England and Wales, Scotland, France, Italy, Netherlands, Scotland, Spain and Sweden suffered the most but all of the studied countries had spikes in deaths across the time period analysed.
This diagram illustrates the weekly death rates which occurred. England and Wales had approximately four thousand more deaths per week than the pre-pandemic predicted deaths.
View full study here (Nature Medicine).
Treatment for chronically ill patients has been delayed further and further each time the covid infection rates have increased. This is to make more room for critical covid patients, and to decrease the chances of spreading the virus further; very understandably so.
In the UK, the National Health Service as well as the private health sector are coping with so much more than they typically handle on a daily basis. Unless you work inside a hospital yourself, you won’t know exactly what is being experienced during these trying times. The physical, mental and emotional toll it is taking on our doctors, nurses, receptionists and other hospital workers must be at an all time high. It therefore has to be mentioned that all hospital staff working tirelessly around the clock, risking their lives, and sacrificing time with their family deserve our utmost respect, appreciation and gratitude.
Although, on an organisational level - there seems to have been no plan in place for other important medical patients since the start of the pandemic. To me, it is as though the only concern was to control the virus as much as possible; leaving other vulnerable patients hanging by a thread to receive life-saving treatment and operations.
Without diminishing the hard work that has gone into managing the covid crisis, I feel we must raise awareness of the continual neglect of chronically ill patients during this pandemic.
At the start of 2020, seven specialised temporary hospitals named ‘Nightingale’ were equipped in preparation for likely spikes in the covid-19 infection rates to relieve the NHS of pressure. Until now, less than two hundred covid patients have been treated across all the hospitals, and the majority of them have remained empty (Metro).
On the surface, it seems that the hospitals, which can hold up to five thousand patients each, would have been the perfect solution for a large number of the chronically ill waiting for treatment.
However, the obvious fact of the matter is that there were not enough staff to keep these hospitals open due to many factors (Keep our NHS public):
“The NHS has barely enough staff to cope in normal times. The vacancy rate now stands at over 100,000 and this is predicted to rise significantly..."
What are we doing now?
It was recently announced that London’s Nightingale hospital have now taken in their first few non-covid patients (BBC), but as Dr Diwakar pointed out, if numbers of covid infections rise, this won’t be the case long term in addition to the lack of staff as mentioned above.
Of course, we are not the only nation to have suffered from immense pressure on our medical system. In the USA, chronically ill patients have suffered a “silent death toll” due to the strain covid has put on their healthcare system (Hit Consultant).
You can find out more about the impact the covid-19 pandemic has had on other healthcare systems around the world, here (IBISWorld).
Where do we go from here?
I feel it is a huge misfortune that a more holistic approach was not well thought out from the start, especially since we didn’t and still don’t know how long we will be dealing with this virus for the foreseeable future, regardless of the vaccines now being distributed.
Perhaps allowing doctors and nurses from countries where covid cases have been significantly reduced, temporarily work in the UK would have meant that we would have had enough staff to cover both the treatment of covid and non-covid patients who need urgent care. Perhaps this also would have meant that the empty Nightingale hospitals could have been equipped and ready for many chronic and urgent treatments to take place.
However, my suggestion above is just my own opinion. I believe professional medics should work more closely alongside our government to ensure that we start to reduce the negative impact on chronically ill patients and patients with emergency care needs, without adding more pressure on other relative countries.
Of course, resolving this predicament might be easier said than done; but I believe where there is a will there is always a way.
At the very least, I believe our governments and healthcare systems should seriously acknowledge and analyse the data collected over the last fourteen months and use this to prevent the same negative impacts should a future pandemic or national health emergency occur.
As a mere observer, I can only provide my thoughts based on facts that have been presented to me.
My attempt at understanding the situation at hand was so that I can provide some insight and, what I believe to be much deserved attention on the plight of those suffering with chronic conditions during these unprecedented times.
Ultimately, I believe a wide scale level of action is needed to provide a solution to best resolve the problem. Yet, action cannot be taken without first acknowledging the severity of the problem. I hope my article has provided a brief but informative overview of the experiences of those with chronic conditions during the current pandemic.
We would like to get a further conversation started around this topic, so please feel free to comment with your thoughts below.
Additionally, if you or anyone you know suffers from chronic health conditions, please get in touch at firstname.lastname@example.org to share your thoughts and experiences pertaining to the covid-19 pandemic. We may use any information shared with us for a potential follow up article.
Hannah Fellerman is the founder of Ezelle, who started the brand to combine both design and social change as these are two of her biggest passions; you can read more on our about page.
All photograph based images used in this article are Royalty Free.
Autism (https://www.nhs.uk/conditions/autism/), NHS, nhs.uk.
Chronic Fatigue Syndrome (CFS/ME) (https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs), NHS, nhs.uk.
What to know about Sensory Overload (https://www.medicalnewstoday.com/articles/sensory-overload#linked-conditions), Jane Leonard, Medical News Today, 2nd April, 2020, medicalnewstoday.com
Covid: Urgent cancer ops cancelled in parts of London (https://www.bbc.co.uk/news/health-55546710), Rachel Schraer, BBC, 5th January 2021, bbc.co.uk.
Major London hospitals cancel operations as covid crisis escalates (https://www.standard.co.uk/news/health/london-hospitals-cancel-operations-covid-b456900.html), Nicholas Cecil, Evening Standard, 23rd December, 2020, standard.co.uk.
Coronavirus (COVID-19) in the UK (https://coronavirus.data.gov.uk/), 20th January, 2021, GOV.UK, coronavirus.data.gov.uk.
Long-term conditions and multi-morbidty(https://www.kingsfund.org.uk/projects/time-think-differently/trends-disease-and-disability-long-term-conditions-multi-morbidity), Time to Think Differently, Kings Fund, kingsfund.org.uk.
Rare disease genomics (https://www.genomicsengland.co.uk/understanding-genomics/rare-disease-genomics), Genomics England, genomicsengland.co.uk.
Supporting people with long-term conditions (LTCs) during national emergencies(https://www.cebm.net/covid-19/supporting-people-with-long-term-conditions-ltcs-during-national-emergencies/), Jamie Hartmann-Boyce, Kamal R. Mahtani, The Centre for Evidence-Based Medicine, 25th March, 2020, cebm.net.
Early insight into the impacts of COVID-19 on care for people with long-term conditions (https://www.health.org.uk/news-and-comment/blogs/early-insight-into-the-impacts-of-covid-19-on-care-for-people-with-long-term), Anita Charlesworth, Toby Watt, Ruth Thorlby, The Health Foundation, 21st May, 2020, health.org.uk.
Non-COVID-19 NHS care during the pandemic (https://www.health.org.uk/news-and-comment/charts-and-infographics/non-covid-19-nhs-care-during-the-pandemic), Ruth Thorlby, Caroline Fraser, Tim Gardner, The Health Foundation, 12th December, 2020, health.org.uk.
Coronavirus disease (Covid-19) (https://www.fitfortravel.nhs.uk/advice/disease-prevention-advice/coronavirus-disease-covid-19), Fit For Travel, fitfortravel.nhs.uk.
Magnitude, demographics and dynamics of the effect of the first wave of the COVID-19 pandemic on all-cause mortality in 21 industrialized countries (https://www.nature.com/articles/s41591-020-1112-0), Vasilis Kontis et al, Nature Medicine, 14th October, 2020, nature.com.
Chronic condition (https://en.wikipedia.org/wiki/Chronic_condition), Wikipedia, en.wikipedia.org.
Coronavirus death rate is higher for those with chronic illnesses (https://www.pbs.org/newshour/health/coronavirus-death-rate-is-higher-for-those-with-chronic-illnesses), Lindsey Tanner, PBS, 15th June, 2020, pbs.org.
Are the NHS Nightingale hospitals being used – and how many are there? (https://metro.co.uk/2020/10/09/are-the-nightingale-hospitals-being-used-how-many-built-13395246/), Jack Slater, Metro, 30th December, 220, metro.co.uk.
Without sufficient staffing, Nightingale Hospitals are an expensive publicity stunt(https://keepournhspublic.com/nightingale-hospitals-publicity-stunt/), Keep Our NHS Public, 29th October, 2020, keepournhspublic.com.
Covid-19: London's Nightingale hospital taking patients (https://www.bbc.co.uk/news/uk-england-london-55619580), BBC, 12th January, 2021, bbc.co.uk.
The Coronavirus Crisis’ Silent Death Toll: Chronically Ill Patients (https://hitconsultant.net/2020/08/25/coronavirus-crisis-silent-death-toll-chronically-ill-patients/#.YAcupOj7TIU), Dr. Kayur Patel, Hit Consultant, 25th August, 2020, hitconsultant.net.
Effects of COVID-19 on Global Healthcare Systems (https://www.ibisworld.com/industry-insider/coronavirus-insights/effects-of-covid-19-on-global-healthcare-systems/) , IBISWorld, 16th April, 2020, ibisworld.com.