Vaccinations and young people with SEND

17th September 2021 • My Family Our Needs

This week, the news was announced that 12 to 15 year olds in England will be invited to have one dose of the COVID-19 vaccine. MFON columnist Carly Jones MBE shares her views on vaccination for young people with SEND and how her opinion took a dramatic shift.  

This evening, as I embarked on typing away about vaccines and SEND, the news broke that 12-15 year olds in England will finally be invited to have one dose of the COVID-19 vaccine. Great timing  ̶  not just for the article subject matter at hand, but more so for our children.  

Earlier beliefs  

Vaccines and SEND have historically always had a delicate past, particularly with the anti-vax movements. I know this because I was once an ‘anti-vaxxer’ myself – a stupid, regrettable and thankfully brief mindset I had in my 20s when I was sucked into the Petri dish of social media that was, by today’s more regulated comparison, riddled with myths about autism and MMR.  

Why? Well, my then six year old had become the first to receive an autism diagnosis in our home, my youngest child had just been born prematurely, I had just become divorced and I was a sleepless, tired, often overwhelmed young mum in need of answers, looking in all the wrong places for advice.  

I refused to give the MMR to my youngest at one ‘just in case’. They were diagnosed as autistic at two anyway and I then realised the gravity of my own stupidity and promptly sorted out the MMR vaccine appointment. Autism is genetic – I was later diagnosed myself.  

Autism causes autism

I’ve tried in many ways to make up for this abhorrent parenting mishap (and my own unshakeable mum guilt) by being transparent about my mistake, making films on the subject matter, helping with national news articles, radio and BBC podcasts around vaccine issues and, in early 2020, I joined the London NHS immunisation board as an independent patient voice member. I should add that this was just before COVID-19 and, like the rest of the world, we had little idea of what that first year would look like back in January. It’s a fabulous team – many of the top experts were thankfully then whisked up to secondment for the pandemic.  

So, what now in the world has changed beyond comprehension?  

We can’t allow anti-vax movements to use the COVID-19 crisis as new leverage to misinform the public and vulnerable, concerned parents for their pre-existing, long-term agenda.  

Parents are tired, scared and, rightly, curious and concerned. As parents – regardless of whether we are disabled ourselves, caring for our disabled children or just parents in general – we are all tired, sleepless and often overwhelmed by the last almost two years of uncertainty and extra workload at home. In all of this, we have to try and remain focused, however, on what our children need.  

So, what’s being said about vaccinations for young people?  

A statement for the Department of Health and Social Care on the evening of 13th September said, ‘People aged 12 to 15 in England will be offered one dose of the Pfizer/BioNTech COVID-19 vaccine, following advice from the four UK Chief Medical Officers (CMOs), the Health and Social Care Secretary has announced today. 

‘In line with the recommendation of the independent Joint Committee on Vaccination and Immunisation (JCVI), the Government sought the views of the four UK CMOs on the wider issues that are relevant to the health of children. 

‘The Government has accepted the advice of the four UK CMOs and the NHS is preparing to deliver a schools-based vaccination programme, which is the successful model used for vaccinations including for HPV and Diphtheria, Tetanus and Polio (DTP), supported by GPs and community pharmacies. Invitations for vaccination will begin next week. 

‘Parental, guardian or carer consent will be sought by vaccination healthcare staff prior to vaccination in line with existing school vaccination programmes. 

‘Healthy school-aged children aged 12 to 15 will primarily receive their COVID-19 vaccination in their school with alternative provision for those who are home schooled, in secure services or specialist mental health settings.’ 

Firstly, absolutely bravo that young people who are home educated or in residential settings will not be left behind. This is so vitally important to the SEND community, when so many of our young people are home educated or in mental health settings.  

It is good also that parents will be asked for their consent. I have a ponder over this, however. When I (again regrettably) refused my baby’s MMR vaccine when they were 12 months old, they couldn’t say, ‘Mum, you’re being really unreasonable here – please reconsider!’ They had no choice.  

Children aged 12 to 15 have their own opinions, access to information and, in many cases, ‘Gillick competence’ – the competency to make medical choices about their own body. What if a parent refuses to consent to their child’s COVID-19 vaccine but the child is unhappy?  

How can the child approach this with their school, carers, secure setting staff or home education immunity services?  

I’ve seen on talk shows parents refusing the vaccine as their child can still get COVID-19 even with a vaccine. This is true, very much in the same way someone with a flu vaccine can still get a mild flu, but the flu doesn’t hospitalise them as they are protected from its worst.  

My 19-year-old daughter volunteered at vaccination centres when the rollout for the elderly was introduced – she had her own vaccines way ahead of her peers due to this. Recently, she and a group of her friends caught COVID-19. I thank God (and science) that she was vaccinated because, although she was tired and unwell, she wasn’t in need of hospital care like some of her wonderful, talented, unvaccinated friends were. 

Unanswered questions  

What about the SEND children who may be denied ‘Gillick competency’ due to learning disabilities?  

The statement states that ‘healthy children’ will be offered the vaccine. What does ‘healthy’ mean? I think there needs to be great clarity here – albeit I’m sure on a case-by-case, child-by-child basis – as to what ‘healthy’ means and how that decision is made. Will this leave many SEND families with more distress and uncertainty as to whether their child will be able to have their vaccine, and if not, why not?  

Without SEND and other child health-based charities having the answers to help parents’ questions be answered, it would be natural for parents to look anywhere for advice, like I did many years ago in all the wrong places. 

My final thoughts… this is a much-needed and vital vaccine finally able to be offered to our children; however, many worried SEND parents’ questions need to be answered by a trustworthy source – fast. 

For more information about the latest Government guidance in relation to young people and vaccination, visit the UK Government website.