Jo shares how son, Dennis, who has Fragile X, got on with having his Covid-19 vaccination
Awaiting the vaccine
Jo tells us, "Dennis was unsettled during the first announcement of the lockdown; TV was banned due to the news updates 24/7 on the virus and number of patients admitted into hospital. However, occasionally he would log in to social media and the news to find out about the latest update and during this period he became a big fan of Tik Tok.
The announcement in December 2020 by the Health Secretary Mr Hancock about the Covid vaccine made Dennis relieved. He came running to by bedroom to tell me about it and wanted me to ring the surgery to book an appointment. When I did ring them they had no information about the vaccine, which disappointed him, anyhow, I was quick to rescue the situation by making a story: 'The government is making a list of all surgeries and names of patients in the area, it takes time to contact all surgeries in Bradford. As soon as the list is ready he will send the same to all surgeries and to our GP, who will then contact us.'
Every day, he asked me the same question: 'When am I going to the surgery to get my vaccine, have they emailed you, please check the email.' Even though Dennis is not a fluent reader, he can identify the email by the first letter, the subject of the key words like vaccine, Dr Stinson, medical surgery and so on. This is possible due to practise and repeating the key words with him every day. He is able to identify text messages and phone calls by the first letter. He felt safe and secure that the vaccine will protect him; when the vaccine was rolled out in different counties and age-wise, he waited for his turn.
I was asked to enrol for the vaccine in January from my work. I work with the Covid-19 hub at Bradford Council, although I did not reveal this to Dennis as it would lead to a meltdown. He wanted to be the first from the family to get the vaccine so he could proudly announce it to his Grandma in India.
On 24 February 2021, the big announcement came: "All people on the learning disability register in England to be invited for the Covid-19 vaccine". Great! Unpaid carers were not on the list (I was thinking of Dennis' cousin who is also his unpaid carer). I had to fight for it and several emails were exchanged with councillors and our MP. I event wrote to Labour Leader, Keir Starmer, to permit vaccination of vulnerable adults at the surgery just like the flu jab. I thought, why was this not possible?
But we parents just shout and no-one listens: "Vulnerable adults are no-one's priority, be it the pandemic, lockdown or the vaccine." Then came an announcement after three weeks that unpaid carers would get the vaccine and hence Jack booked his vaccine.
In the meantime, I was preparing Dennis as he only had one question every day: "Have you received an email for my appointment?". I would respond, "Your turn will come soon. As soon as I get the email, I will let you know." During this assurance period I used to get phone calls from social care wanting to know if I had booked an appointment for Dennis. The whole point of me contacting the MP and councillor was to request the surgery to administer the vaccine to patients including vulnerable adults, but nothing happened.
I made it clear to social care, "Do not leave any messages on the landline or call me because Dennis would assume that the appointment was allocated and we had to make our way to the surgery the next day when in fact, the call from the surgery and special care was a reminder for me to book an appointment."
Finally, I made a decision to take Dennis to the medical centre allocated to him so I made enquiries regarding the provisions that were in place for adults with learning disabilities and difficulties.
I informed them about Dennis' expectation and that I would have to accompany him for the interview and probably take photographs so that he could show them to his Grandma back in India, as she is currently unwell.
We booked a taxi to the surgery, and Dennis wanted me to repeat what he was supposed to do, and what he should expect. When we arrived, he jumped out and made his way inside, remembering the social distancing rules and leaving me behind! He spoke to the queue management team and listened to their instructions about using the lift or the staircase. I interrupted the conversation and said aloud, "stairs, please." He followed me but was very annoyed and requested that next time, I should not interfere as he can make his own decision, and he wanted to use the lift.
Receiving the vaccine
Waiting for his turn At the booth Dennis was greeted by the young doctor, who directed him to be seated. At each question, Dennis turned to me for cue/support and I supported him to answer the questions. They were as follows:
- What is your date of birth?
- Have you any symptoms of Covid-19?
- Have you had Covid-19 in the last 30 days (which is quite hard for Dennis to grasp)
- Which hand would you like the vaccine? I had to remind Dennis is he wants to use the hand that he uses to eat, or the other hand, and so on.
After the vaccine He did not feel any pain or prick. I took this photo after we left and Dennis went straight on to get his card for the next appointment. During this transition he was quite calm and focused. He wanted me to leave him alone and not interfere, so I kept my distance from him. He approached the desk and waited for 10 minutes in a socially-distanced queue and answered all questions. In return, he was given an appointment card. He went down in the lift and straight to the waiting taxi outside and off to Tesco to buy a drink an ice cream. He did not sleep, nor did he experience any fever or ache and pain, only a slight swelling and pain in his upper arm.
He took paracetamol tablets, he waited for his second vaccine keeping his appointment card in the file, looking at it every day to remind himself when he needs to go to the surgery (a few days after his birthday).
He wants to travel alone this time without me, I have only to book a taxi for him.
I am thankful for the wonderful service that the medical centre has provided to Dennis and other vulnerable adults, from the receptionist and queue management team to the doctors to have been patient, calm and welcomed everyone with a smile, as I was worried to death about how Dennis would cope with the transition.
He proudly showed his photographs of him having the vaccine and his appointment card to his Grandma in India on WhatsApp. He still wears his mask and gloves, sanitises his hands and keeps social distancing when he travels on the minibus taxi."