Coronavirus: Living with A Disabling Condition & Excluded From U.K. Government Covid-19 Measures

It has now been over two months since the Government imposed U.K. Lockdown and limited Online Supermarket Shopping accessibility to only people at increased risk of severe illness from Coronavirus (COVID-19). To date, I do not believe that serious consideration has been given, or discussed in a wider context concerning people living with disabilities (regardless of health conditions). I am a long term chronic illness Fibromyalgia warrior and someone classed as living with a disability (disabling condition). 

I also writing this blog post in recognition of Fibromyalgia Awareness Day and Mental Health Awareness Week which are significant days for most people, living with disabilities, whether it be physical or mental health related conditions.  

Given the opportunity, I would ask the U.K. Government the following questions for further consideration and clarification;

1. Why people who fall under the protected Equality Act 2010 laws have not been considered to date as a group at risk in the UK Codvid-19 Risk Assessment Response Measures? Especially in relation to empowering and enabling disabled people to still access online supermarket shopping as basic human rights necessity. At least giving the option for this category of people to have the accessibility rights to access online shopping. Taking into consideration that most of us prior to the pandemic would have relied on this easy online access and means of shopping for necessities as part of our daily independent living.

2. When will people living with disabling conditions be included into further serious consideration and discussions of “people at potential risk category,” within the U.K. Government’s wider communication and approach to public risk reduction measures? For instance, people like me who are living with invisible disabilities and incurable long-term chronic health conditions who have to self-isolate, or take extra-precautionary measures healthwise to minimise the risk of being infected with Coronavirus.  

3. Is the government aware that by excluding this group of people further, there are further financial risks and well-being pressures impacting these group of people? 

Ever since the U.K. Government imposed lockdown, online shopping access and additional financial support measures, I have felt as though I should be grateful for all the special measures which have been implemented, so far in the best interest of the majority of people. Additionally, to be grateful that I still have access to alternative online shopping means, even if these new means are more expensive than before. 

On the other hand, I have started to feel more disempowered and restricted in the ability to freely access online supermarket shops the longer the lockdown has gone on. Being excluded from some of the key government measures has also meant that additional financial pressures have started to occur for some of us, due to having to find alternative and more expensive means of online shopping.

These limitations and imposed restrictions feel as though my equal rights to easily access essential livelihood and basic necessities have been stripped away. Making it harder for those of us who must self-isolate, to find or rely on other means of being able to access necessities we need. Further, consideration has not been given that not everyone will easily have the capability to access new alternative ways of finding necessities especially in the absence of family, friends, and neighbours to assist. 

It has also not been considered that it can be difficult for some people living with disabilities to ask for help, due to numerous factors. This is especially if you are used to have some of independence, it is not easy to been seen as being vulnerable and dependent on others. Others who might be strangers, even if they volunteer to provide a service on your behalf.

Overtime, I have increasingly become disillusioned by the U.K. Governments (England) approach in its application of risk management measures, which has excluded people like me, who are living with disabling long term chronic health conditions.

It was a reminder for me of how far U.K. Government still has to go before invisible and long term disabling chronic health illnesses such as Fibromyalgia are taken more seriously and recognized equally as disabling and incurable conditions. A disabling condition which has limited most people like me from being able to live ordinary lives and limited our capability to work in ordinary work conditions. 

The current pandemic has not made things easier, only shown how equal opportunities can be easily disregarded for some protected groups. According to the U.K. Government website their social distancing measures focus on people who are who are understandably so, “at increased risk of severe illness from Coronavirus (COVID-19). I do not dispute this fact and serious measure that has been implemented. My concern is the long term well-being effects limiting access for disabled people has, especially those who have underlying health conditions as well. Even though they may not be as high risk, there can still be adverse and costly impacts our lives in the short or long term.

The groups they have included include the following groups of people; 

1. aged 70 or older regardless of medical conditions)
2. under 70 with an underlying health condition listed below (ie anyone instructed to get a flu jab as an adult each year on medical grounds):chronic (long-term) mild to moderate respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis
3. chronic heart disease, such as heart failure
4. chronic kidney disease
5. chronic liver disease, such as hepatitis
6. chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy diabetes
7. a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets being seriously overweight (a body mass index (BMI) of 40 or above)
8. those who are pregnant

Sadly, the list above does not include people with disabilities (regardless of medical conditions) and those of us who would struggle to undertake ordinary activities such as going to the supermarket due to physical impairments/limited physical ability and the adverse health impact of having to stand in queues for prolonged periods.

Additional further consideration has not been given that within this category of disabled people, some of us have underlying health conditions and compromised immune systems, which does not necessarily fit in the above U.K. Government guidance. It excludes, people who also must self-isolate to minimise potential risk of being inflicted with coronavirus or people who would ordinary be housebound most of the time due to living with disabling health conditions.

The current pandemic has restricted most of us further from exercising our equal right opportunities and easier equal accessible means to help us maintain our independent living and overall well-being. Some of us that were able to occasional obtain self-employment have also been excluded from new self-employment government grant as we do not meet the threshold, thereby being inflicted by secondary livelihood challenges.

Over a couple of weeks ago, I heard the Boris Johnson, U.K. Prime Minister mention people with chronic health conditions in the category of people at risk, who should continue to remain isolated, or take certain extra precautions. This was when he along with U.K. government decided to change the U.K. Lockdown measures, from "Stay At Home," to "Stay Alert." Although he mentioned people with chronic conditions, this was not clarified or specified at to what type of conditions he was referring to. I can only assume based on the U.K. Government category of people at risk, he was still referring to people with high risk health conditions.

What has not been considered is that most of us relied on being able to independently shop online with major supermarkets, as our means of independent living and reasonable financial livelihood. 

The other factor that has been forgotten under the new "Stay Alert," policy is that most of us our lives won't change that much, even though we have been granted the right to go out as often as we can. Most of us will still continue to avoid Supermarkets and Crowded Areas for different reasons, in order to maintain our well-being safely.

The current measures are not practical for most people living with chronic and disabling conditions. Here is why;

I live with a chronic disabling musculoskeletal widespread pain condition known as Fibromyalgia and Chronic Fatigue Syndrome.“Musculoskeletal pain affects the bones, muscles, ligaments, tendons, and nerves. It can be acute (having a rapid onset with severe symptoms) or chronic (long-lasting).” Aside from these musculoskeletal pains, people also experience other numerous ailments which including cognitive issues. – Mayo Clinic

What hasn’t been factored into the government new conditions is that most people who live with a chronic pain condition such as Fibromyalgia in the absence of other underlying high-risk conditions are not able to stand in one position for prolonged periods at time, such as waiting in long queues at supermarkets to buy food. Standing, or walking for prolonged periods than expected does trigger muscle stiffness and chronic pain widespread pain. For some this can lead to mental health related conditions, as result of being stressed (i.e. depression and anxiety). No one wants to voluntary live with severe chronic pain or other illnesses, especially in circumstances where it can be reduced. Anyone living with chronic pain, will tell you that prolonged periods of pain induces sadness, which can then escalate into other ailments.

This then rules out the opportunity for someone living with Fibromyalgia to be able to physically go to supermarkets. There also has to be further consideration given to the current climate, there are longer queues at most supermarkets due to the implementation of physical distancing measures. The whole process of shopping takes longer than it would was before.

Additionally, most of us who fall into the category of people with compromised immune systems and additional underlying conditions, who must self-isolate, have not been included in the priority of people needing access to online shopping necessities.

Nor have the people with disabling conditions with low risk health conditions who can physically go to the shops, been given further consideration in equal accessibility rights at supermarkets. For instance, suitable times, they can go into the supermarket, whereby they can go and shop briefly without having to aggravate, or impact their well-being adversely, as a result of having to wait with lots of people.

I am also someone as a case in example, who became inflicted with severe coronavirus symptoms, which took me seven weeks to recover from due to my compromised immune system and flare up of my underlying chronic health condition. Fortunately, I was able to recover and did not have to go into hospital. Thankfully, I was informed by Emergency Medical Service, it was safer for me to recover from home due to protect my compromised immune system. To date there is no medical or scientific confirmation, that I will not be re-infected again with coronavirus symptoms, therefore I have to continue to self-isolate. Regardless, I would not be able to access supermarkets in the current conditions we are living in.

We have been asked to reach out to neighbors and families that can help. At the same time, these measures only work short term.

• Living with a chronic condition already feels disempowering and disabling. Especially when you are placed in a position where you must rely on someone else in some cases strangers in the absence of familiar assistance.

• There are no mental health benefits in asking for help over a prolonged period. One can also start to feel guilty about potentially putting someone else at risk by asking them to do you a favor. 

• Not everyone is the position to reach out to people who can help them when they need to. Or they might be surrounded by other people who are potentially at high risk as well. Or surrounded by people who also must self-isolate.

• Most of us only qualify if at all for Universal Credit only and not Personal Independence Payment (PIP), because our condition is not considered “disabling enough.” Nor do we meet the threshold for self-employment grants, due to limited capability to work on a regular and consistent basis. Or we have stopped receiving new work self-employed work opportunities.

The challenge here is over a short-term period these measures work where certain liberties and freedoms work in the best interest of the everyone. Over a prolonged period, the current U.K. Government measures will not work and will start to impact the overall well-being of most people.

Based on my own personal experience and journey so far since the lockdown, I feel more disempowered than I have felt before. I am in the group of people who have been forgotten about, left behind, and excluded by U.K. Government new measures. I do not fit in the low, or high-risk group category. I cannot afford the luxury of being able to go out without worrying about the potential high risk of being inflicted again with coronavirus system. Nor, do I fit the category of someone who is sufficiently physically able to undertake ordinary activities such as going to supermarkets and queuing up, without aggravating my chronic health condition symptoms.

To conclude, I feel as though once again in the wider U.K. Government Communications and approach certain equal liberties for people living with disabling and incurable conditions have been disregarded from equal opportunities and accessibility rights. Social and physical isolation alone is mentally challenging to adjust. When you add other liberties such as your livelihood being taken away, or limited it becomes much harder to manage well-being over a prolonged period.

I do appreciate that there are serious concerns for people who are at increased risk of being impacted by coronavirus. At the same time, I believe that further consideration and measures by the U.K. Government should have been considered for people in my category.

We are a group that still wants to continue to access our independent living rights of being able to supermarket shopping slots online. 

This is also keeping in mind that most of the people who are at high risk do receive government food boxes. Therefore, there should be further consideration for some online delivery slots to be opened to those of us who have had to self-isolate and those of us with disabling conditions, who are limited from engaging in ordinary activities.

Our civil and equal liberalities were implemented for a reason in the U.K. This was to ensure that there was equal access to services to everyone. This is the reason, I have chosen to write this blog post and to no longer remain silent.