ALERT: Be Aware. This is COVID Autumn 2024. UK Carers prepare yourselves!
CARE, be AWARE, PREPARE, and ENGAGE we are NOT super heroes or superhuman
Hello, Dear Reader! Welcome to our new Carer Mentor community members!
I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
This will be a rapid article because I have limited energy and breath and keep coughing my throat out whilst I type.
I need to raise your awareness, especially for Caregivers in the UK, or as we’re labelled, ‘UNPAID CARERS.’
At this moment, I am COVID positive. Alongside this, I have a severe Streptococcus sore throat (umm not just sore but raging burn, with involuntary cough spasms I can’t control easily). My side muscles and chest muscles hurt from coughing. The ‘white spots’ at the back of my throat were tell-tale signs of the infection. SO this means there is a heavy viral COVID load in my body AND a heavy bacterial load as well. Lovely!
I paid privately for a vaccination at the earliest possible moment, September 19th.
Following a visit from family for my mother’s birthday she was hospitalised Friday 27th of September, and I tested positive Saturday 28th.
Learning 1: It takes a few weeks, NOT 1 week, for your body to build the antibodies and immune response to COVID after a booster vaccination.
My Mother has two different cancers and is immunocompromised, and we thought ‘pre-authorised’ to receive antivirals in the community setting. It took me from 10 am to 3 pm to get the ‘SMS text message’ prescription. It was 5 or 6 ‘triage’ lists of questions to get THAT text message, and people were more concerned about ‘eligibility’ to qualify than her present state of health.
I’ll share more about the events of Friday, 27th September, in another article.
Learning 2: I was able to do what ALL caregivers do—care for my chronically sick loved one, who cannot advocate for herself. My mother had a temperature of 40’C = Febrile Fever. Seizure and convulsions et al.
If you or your loved one is immunocompromised, tests COVID positive and has a temperature over 38°C, CALL EMERGENCY SERVICES. It’s imperative to get help.
[GET some COVID Test kits asap}
In the hospital, she had a confirmed diagnosis of COVID and pneumonia (physicians were trying to diagnose between pneumonia and sepsis).
I ensured no unsafe discharge overnight on September 30th.
I ensured we checked for Pulmonary embolisms (D Dimer Test)
Learning 3: When caring for your loved one AND you are COVID-positive you may get Tachycardia (Pulse rate 100 - 110), a temperature (over 38 ‘C) and a severe headache. TELL your doctor.
If you’re sitting in a hospital room at 8 p.m., demand some paracetamol and get a wet towel to put on your head and around your neck to reduce the temperature. Meditation helps reduce your pulse rate and increase your oxygen saturation.
Learning 4: The sore throat is dry and burns. Soothers, lozenges, like Strepsils, or organic honey did not work for me. All these dried out my throat even more, and the cough returned with a more severe vengeance.
Learning 5: Because there was no bed available in the Respiratory ward in the hospital, my mother was discharged from the hospital itself to use the ‘Virtual ward’.
First, there were errors on the discharge letter - we’re still waiting to be surprised with a 100% accurate letter since 2015.
Second, with all the stress of hospitalisation (incl. PTSD flashbacks of Dad’s falls and nights spent in A&E), with being ill myself, I had to learn what they wanted me to measure, record and submit.
Learning 6: Be Aware of your loved ones being forced, pushed to take their own ‘observations’ BP, temp, oxygen, pulse, and respiratory breaths, record them on an iPAD and submit them.
Of course, they have to be able to connect to their home WiFi and call the Virtual Ward team to ensure their doing what they’ve been tasked to do.
So, the clinical monitoring burden has been shifted onto loved ones, carers or the patient themselves right at the most sensitive time when everyone is stressed, tired and worried (in my case, with worsening COVID symptoms).
There may be a place for this, but there is NO WAY; my mother could have done this herself. The hospital, NHS protocol uses caregivers who are not paid as their free resource. It feels like the system is using our love and goodwill for their cost savings and productivity.
Here is the crucial information I want to share with you:
GET VACCINATED as soon as possible for FLU AND COVID
UNPAID CARERS in the UK: If you are under 65 years of age and have no underlying health condition, you are NOT eligible for the free COVID booster.
It is possible to pay for a vaccination privately the cost is between £80 - £100
Carers UK information: THIS INFORMATION IS DIRECT COPY from their website
COVID-19 is more serious in older people and in people with underlying health conditions. Vaccination against COVID-19 is very important to protect people from serious illness and to support NHS and adult social care provisions.
Who is eligible for the COVID-19 vaccine in Autumn/Winter 2024/25?
The groups to be offered a COVID-19 vaccine in autumn/winter 2024/25 are:
residents in a care home for older adults
all adults aged 65 years and over
persons aged 6 months to 64 years in a clinical risk group, as outlined in tables 3 and 4 of the COVID-19 chapter of UK Health Security Agency (UKHSA) Green Book on immunisation 2
pregnant women
frontline health and social care workers and staff in care homes for older adults
The recommendations for who is eligible for the vaccine has been decided by the Joint Committee on Vaccination and Immunisation (JCVI), based on the latest scientific evidence.
The current Government COVID-19 advice is available here.
If you are unsure if you are eligible for the COVID-19 vaccine, please contact your GP.
When does the COVID-19 vaccination programme begin?
The COVID-19 vaccination campaign will begin on Thursday 3rd October 2024, at the same time as the Flu Immunisation programme. If you are eligible for a flu vaccine, you may be able to have them at the same time – or you can have them separately.
How to book a COVID-19 vaccine
Eligible people will begin receiving invitations from the NHS to get their jabs, while GP practices and other local NHS services will also be contacting people to offer both vaccines. Anyone eligible can also book their own vaccinations via the NHS website, by downloading the NHS App, or by calling 119 for free if they can’t get online.
Why should carers be concerned about COVID-19
If you are caring for an elderly, ill or disabled relative or friend we encourage you to check if they are eligible for the COVID-19 vaccine. The vaccine will help protect the person you are caring for from serious illness.
While unpaid carers are not eligible for the vaccine this year, you may wish to take extra care and precautions if you are caring for someone who is vulnerable. See the government guidance 1 for more details about how to stay safe this winter.
Have unpaid carers been eligible for the COVID-19 vaccination in the past?
Yes, during the pandemic in particular we campaigned for unpaid carers to be in the priority list for vaccination, which we achieved. Carers said that, as the primary carers of people with key vulnerability, getting ill not only posed a risk to the person they cared for, but not being able to care would put additional strains on the health and care systems.
What are unpaid carers raising with Carers UK now?
Carers are telling us that they are worried about passing on the virus and posing a risk or not being able to care for the person with significant conditions or disabilities. Some have told us that they are sick with worry.
What is Carers UK doing about carers’ concerns
We are encouraging all carers to make sure they or the person they are caring for have had the COVID-19 vaccine, if they are eligible. You can access our COVID-19 guide for carers 1 for more information.
We [Carers UK] are concerned about carers not being eligible for the COVID-19 vaccine this winter and have raised this with senior politicians at the Labour party conference.
Key links for more information about the COVID-19 vaccine
Personal commentary based on Carers UK data:
As I cough my throat up here, I’m appalled at the idiotic accounting that someone may have made in their logic of eligibility for the COVID Booster Vaccine.
Unpaid carers who save the economy £162 Billion are at risk of NOT being able to care for their loved ones this Winter, because they will fall ill with COVID.
Quote from Economic Impact of Care by Carers UK1
Unpaid carers in England and Wales contribute a staggering £445 million to the economy every day – that’s £162 billion per year (Petrillo and Bennett, 2023).
The value of unpaid care is equivalent to a second NHS in England and Wales, which in 2020/21 received an estimated £164 billion in funding (Petrillo and Bennett, 2023).
Immunocompromised patients in the UK cannot easily acquire antivirals through the ‘centralised system’ - I tried it took 6 hours just to get a prescription and to be told, I needed to find a pharmacy that would order it for me to have it the next day. In the 6 hours I was trying to get a prescription authorised Mum’s temperature escalated severely and we needed A&E.
IF you or your loved one is COVID positive, and has a temperature over 38’C call emergency services. Ambulance. Don’t sit waiting in A&E you will be infecting other people. Call an ambulance. Oxygen is important.
Imagine - I’m tech savvy, pushy and an experienced communicator with medical and scientific knowledge….and I was in tears with a GP on the phone on Thursday 3rd of October, because he was the FIRST medic to empathise with our situation.
Since I’d answered all the questions, on the e-consult form online, used the medical terms I knew and his short questions, he readily prescribed Amoxicillin.
BE PREPARED!
PLEASE SHARE THIS WITH ALL YOUR FRIENDS, FAMILY AND CHRONICALLY ILL CONTACTS
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Just catching up and very much hoping you and your mum are feeling at least slightly better! What an awful experience, I'm so sorry. I'm so impressed that you're able to write, thank you for sharing with others. I'm sending you all the positive thoughts and energy for recovery. <3
My dear Vicky! It saddens me so much to hear the kind of grueling ordeals you've gone through, battling COVID yourself while taking care of your mum. Monitoring her medications is a very tedious job that takes up a lot of attention and energy. Don't you wish that the nurses would be more on top of things? The frustrating thing seems to be that there's never enough resources in the hospital system. It amazes me that you were able to write this article to give other caregivers warning and resources. Your generosity is boundless. I hope you take your time to rest up and focus on your own healing now. Sending you lots of love, hugs and prayers!!! xoxo