|22nd April 2020
Being diagnosed with a chronic illness changes your life – it’s a defining point. Many of us think of our lives as a pre- and post-diagnosis. Now, regardless of who you are and where in the world you live, we all have a sense of a life “before” and “after.” The way we live, work and socialise has changed beyond recognition, under the shadow of the COVID-19 coronavirus pandemic.
Living through a pandemic when you’re in an at-risk group is terrifying, challenging and at times has felt like a continuous mental onslaught. Despite this, I and many others who live with long-term conditions and/or disabilities, have also found ourselves well-placed to embrace mandatory social-distancing and self-isolation, given that many of us already do these things to varying degrees.
Patient communities have joked that we’ve been social distancing and self-isolating for a long time. Every winter, many of us hibernate to avoid picking up the many bugs that circulate. Many of us are used to regular hand washing, slathering on hand sanitizer when we’re out, avoiding touching “high traffic” areas like public door handles, and wiping down things like shopping trolleys and airplane seat trays before we use them. It’s our normal. Now it’s everyone else’s too.
I’m in a particularly vulnerable situation. Not only do I live with multiple sclerosis (MS) and chronic urticaria/angioedema – both of which could flare up as a result of an infection – every member of my household falls into one or more at-risk groups.
My sister is immunosuppressed and is one of more than 1 million people in the UK that has been told to “shield”. My Mum is over 70 and has several chronic illnesses, including lung problems, and my Dad is over 70 too. This has meant self-isolation has been a logistical minefield when it comes to shopping, medications, medical appointments and work because none of us can leave home.
Making sure we have enough fresh food and essential items at home has been a concern. Whilst some of us may have used online ordering before because of our conditions or disability, many of us physically go to the shops because we can – it may be one of the only reasons we leave the house.
Trying to secure an online delivery slot now is almost impossible unless you’re registered on a vulnerable person list with one of the supermarkets. Many supermarkets aren’t registering new customers, so if you didn’t already have an online account you’re stuck.
Consequently, some vulnerable people have to rely on friends, family or local volunteers to do their shopping instead. While we are all grateful for their help, our independence is being eroded. I’ve heard of vulnerable people getting up at 3 am to try to book delivery slots and others “rationing” what they eat because they don’t know when they will next be able to ask someone to shop for them.
Panic buying has compounded these challenges. Our household, like many others where someone is living with a long-term condition, regularly uses hand sanitizer and soap. Additionally, I have irritable bowel syndrome and MS-related bladder issues, and my sister lives with ulcerative colitis, an inflammatory bowel disease. We use the toilet…. a lot… We use toilet paper…. a lot, and we wash our hands…. A lot. Not being able to get hold of toilet paper, hand sanitizer and soap has caused me significant anxiety.
I’ve been working from home for many years and don’t need to travel into an office, so this wasn’t something I had to worry about. However, others haven’t been so lucky.
Some have had to battle with their employers to be allowed to work from home. Even after the government advised employers to let vulnerable people work remotely, some employers chose to ignore the guidance. This has been problematic for those who had not previously disclosed their medical condition to their employer.
In the past, some people with long-term conditions or disabilities had asked to work remotely, but their employer had refused because ‘the company was not set up for working from home’. However, in light of the pandemic, these organisations have quickly adapted to remote working. This has led to feelings of resentment in patient communities.
Once the pandemic is over, I’d hope that organisations continue to use digital tools to make the workplace more accessible to everyone.
Anxiety is common among all patient communities and has been exacerbated by the pandemic. Anxiety about getting ill, anxiety about care, anxiety about basic supplies, anxiety about medications. I’ve had to ask friends to collect our household’s prescription drugs (around a dozen individual items in total) because my local pharmacy is small and doesn’t have the manpower to arrange deliveries.
Lead times for repeat prescriptions have been longer. I’m constantly worried that supply chains will be disrupted, and I’ll be left with no medication. Additionally, some surgeries have been delayed, causing further worry for many patients. This is compounded as many patients were facing long waiting lists for these procedures prior to the pandemic. It now looks like they will have to wait much longer to receive life-changing or life-lengthening treatments – it’s easy to feel as if there is no end in sight.
Likewise, never before has it been so important to offer alternatives to on-site drug administration like IV infusions. Patients are caught between a rock and hard place – having to decide to either go to the hospital and risk being exposed to COVID-19 or delaying their dose and risking their disease worsening.
Access to care at home and alternatives to IV therapy would reduce our risk of contracting COVID-19 and other diseases significantly. In some cases, dedicated infusion centres are being set up to ensure patient’s receiving intravenous therapies do not have to expose themselves to the hospital setting. This is a good compromise, but we still have to leave the safety of our homes, which many patients are obviously terrified of doing.
Many healthcare teams are being redeployed into general medicine. My neurologist has been re-skilled and is doing just that, as are many of his colleagues. It means the onus is on me to self-manage my MS for the time being.
The root of anxiety is often a lack of information. It’s important to keep patients informed of any changes, whether in the supply chain or the development of alternative therapies. This helps us make informed decisions about how to manage our treatment in the short- and long-term.
Pharmaceutical and healthcare companies could help to alleviate anxiety by providing information about whether medications will be affected so patients can talk to their healthcare team about how to manage this.
Telemedicine and disease self-management has also become increasingly important. Telephone appointments or video calls have become the norm. Healthcare systems, such as the UK National Health Service, are doing a huge amount of work to ensure patients can receive care virtually. For example, the NHS is working on a system that automatically generates sick notes for those suspected of suffering from COVID-19. It has also partnered with Google to introduce Knowledge Panels – a pop-up information box as part of Google search on mobile phones, which provides access to information on 250 health conditions, including COVID-19.
However, asking the patient to become active in the management of the disease is not as simple as it sounds. They have to be both motivated and able (educationally and legally) to become an informed patient. The industry has an important role to ensure everyone has the opportunity to be better educated and informed about their disease and are supported in this education.
Access to good quality, comprehensible and trustworthy information is more important than ever. Even now, in the middle of the pandemic, I hear that patients are confused about what the pandemic means for them. This includes which guidance they should follow regarding medications, social distancing and shielding.
There has been a coordinated response from charities, medics, researchers and the UK MS Register to provide specific information about what COVID-19 means for people with MS. The information has been consistent, timely, collaborative and updated regularly. This is being replicated in other disease areas too.
This pandemic has brought patient communities together. We’ve looked out for each other. We’ve shared advice. We’ve supported each other at a time when many of us have felt society considers us to be “dispensable.”
How many times, particularly at the start of the pandemic, did you hear someone say: “only the elderly or those who have underlying conditions are likely to die from COVID-19, so don’t worry”?
Some think they are fit and healthy, so they don’t have to follow the guidance. This has been reflected by how busy London tube stations continued to be when the virus first emerged. All this has made many of us with long-term conditions or disabilities feel like we don’t matter to society – that people don’t care that COVID-19 could kill us. Possibly because we know a disproportionate number of other people with chronic illness, patient communities are used to taking collective action to protect our health. Now, we’re fighting for those outside our communities to see its importance too.
However, there is a brighter side. Today it seems as though everyone is taking better care of their health. This has been proven through the rise in fitness apps and virtual exercise programmes. Many are also empathizing more with those suffering from long-term illnesses, understanding that the challenges of lockdown will last long after the outbreak for those with certain disabilities and diseases. The virus has inspired a sense of community spirit, from singing to support healthcare workers to a rise in volunteering with many individuals picking up prescriptions, doing food shopping for those in need and offering to virtually speak to people isolating from the disease.
Society has also been forced to improve access for people with long-term conditions and disabilities, whether through remote working or the digitalization of healthcare. Perhaps, if we work together, we can ensure one of the lasting results of the pandemic is improved access and outcomes for all.
1. Don’t be hard on yourself: It’s OK if you don’t learn a new language or do yoga every day. Sometimes just getting to the end of day is an achievement in itself and it’s something you should be proud of.
2. Be open about your feelings with other members of your household: there’s bound to be frustration, sadness, worry and anxiety, but if others don’t know how you’re feeling they can’t be expected to support you.
3. Develop a routine and a plan for each day: This helps your body both physically and mentally. It also gives you a sense of purpose, particularly if you’re unable to work during the lockdown.
4. Get fresh air: If you’re craving fresh air but shouldn’t be going out, open a window and make sure you have access to plenty of natural light – it can really lift your mood.
5. Make sure rooms that you spend the most time in are a pleasant environment: whether that’s learning the art of Feng Shui it or simply putting up some photos that make you smile.
6. Maintain perspective: Focus on the things you can control and adapt your reactions to things that you can’t control.
7. Be creative about exercise: if it means walking around the living room while you’re on a phone call, do it.
8. Practice good sleep hygiene: it’s good for your physical health but can really help to maintain good mental health too, as when we’re tired it’s much easier to feel like we’re not able to cope.
9. Review your personal Finances: It’s always a good time to review finances, wills and care wishes, and make sure your family knows about them.
10. Be prepared: Create a document that contains all your personal details – emergency contacts, GP name and address, medications and health conditions. You can take with you easily should you need to go to the hospital.
To find out more about patient-centricity, and to read more articles by Trishna, download our latest publication‘Perspective: the patient edition”.
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