My son has Autism and Rubinstein Taybi Syndrome, he is registered with his GP as Clinically vulnerable. As his main carer I was offered the Coronavirus Vaccine under the conditions of being a carer for a person that is clinically vulnerable.
However, as he is so scared of needles and has a known history of never allowing a nurse near him with a flu jab each and every year, he has had to be admitted into hospital on 2 separate occasions for minor dental and toe nail work which he had to be sedated in order to administer Local Anaesthetic.
With this in mind, back in December when the Coronavirus Vaccines were first being made available, I embarked on a mission to resolve any issues that may occur in administering the coronavirus vaccine to him, and others like him, by trying to make sure a practical solution and plan was put into place well in advance.
However to my utter frustration, on 14th February the Government announced to the world that everyone in his cohort had either had a vaccine or had been offered one, yet he had neither.
On 24th February the Government again announce that all those that are clinically vulnerable should now have one and if they have not been offered one they should contact their GP. I had been in constant contact with my GP but he had still not been offered one.
Considering my GP surgery and also others locally that I know of, all have telephone voice messages telling callers “if your call is regarding coronavirus vaccines, please hang up now, we will call you when it is your time” this government message to the world seems to have escaped the very places that could action it.
It is clear that my son needs sedation in order to receive the vaccines by his medical history and the more recent attempts with various changes to venues and nasal sprays tested and failed. Indeed the reasons given for not inviting him for a vaccine was that he needed sedation.
It now appears that the position within care settings is not to sedate patients for this and wait until they have to be sedated for other treatments such as dental care and administer vaccine then.
Baring in mind My son does not currently need any dental treatment that requires sedation, nor any other such treatment, it appear we have to just sit and wait until he does, which could be months if not years.
Following a week of mass media attention placed on various Government, scientific and health authorities statements, stressing that the benefits of the AZ Vaccine by far out weigh the risks. I am struggling to understand how giving a sedative to clinically vulnerable with needle phobias can possible tip those scales in the opposite way, especially when they have been sedated without any issues in the past.
Perhaps some one can help to clarify how the argument against anti vaccers is also being used the opposite way against those with needle phobias, by explaining how my son can be treat as if he is less important than anti vaccers and for him not to have the vaccine is somehow OK..
PS I have already wrote to my MP and the response he got from the Government minister for vaccines is attached, which sadly made no attempt to address my question. So I was wondering if anyone else is in the same position and why nothing is being done about this,
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Dunn62
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This is just dreadful you poor thing you must be so stressed with all this worry on top of everything else. My son has had his first vaccine now he has autism and severe LD non verbal etc etc and has to have a general anaesthetic so I understand your dilemma. I would speak to the learning Disability nurse at your local hospital to see if she can advise you or speak to your local continuing healthcare and speak to the learning Disability there or speak to the Mencap helpline or the autistic society surely one of these organisations should be able to help you. But your G P should be being more helpful of his consultant why is everything such a fight as if life isn’t hard enough for parents it makes me so angry. I wish I could could do something more to help you write to your MP contact your lovely paper your localTV I would go anywhere and everywhere I could to get the help I needed this is ridiculous he needs this jab. I wish you luck
Hello Dunn62. Thanks for bringing this to our attention, this is the first I have heard of this reluctance to use sedation and wonder if there are medical reasons the vaccine and sedation cannot be used together? I’ve not heard or read about this anywhere so far. My understanding is that if someone lacks capacity to make the decision to have the vaccine and those who know the person best believe it to be in their best interest, having weighed up the options and issues, that it can then be decided, again under best interest, what least restrictive approach is needed to enable the decision to be enacted and this will include those medical considerations. For many this will be using sedation, as is the case for so many invasive medical procedures to prevent trauma. I do worry that without sensible decision making that there is the risk that lots of fearful people will be missing out on the vaccine, or conversely needle phobias are being created in people who endure well meaning but inappropriate procedures (inc. restraint) that have not been considered or planned through best interest processes. It is definitely not a simple issue and needs sensible, person centred thinking. I found this interesting piece in the BBC that echos your concerns bbc.co.uk/news/uk-england-d....
I’m pleased Jofisher replied and would love to hear about other people’s experiences.
Hi Iolo. This is my son in this bbc article! 😍. Since it was published we have worked with our local Primary Care Liaison LD nurse to find a way to get our son vaccinated. In our case strategies like social stories and needle desensitisation are not helpful as our son’s LD is profound so we made a joint decision that we should investigate the sedation route. The LD nurse contacted our GP who sought expert advice on the use of sedation in these scenarios. It was then agreed that the GP would prescribe the sedation and we would trial it with our son (he lives at home). What did I learn? That sedation administered at home is not a very useful tool in many cases. Contrary to popular (and my!) preconceptions it does not necessarily make a person sleepy or put them to sleep, or alter their level of alertness or stop the fight or flight response. At best, it makes a person less anxious and ensures that they don’t remember what went on during the period in which they were sedated. Not hugely useful when you are trying to stick a needle in the arm of someone with the strength of Mike Tyson combined with the slitheryness of a snake! There are also a lot of safety issues, a small accidental overdose can stop breathing and be fatal, it stays in the system for a while and can be dangerous overnight if the person has sleep apnoea, it can cause violent vomiting as we discovered, and so on. Sedatives also have a different effect on different people, some go completely wild and hyper, some get very depressed, some need a small dose, some need the maximum etc. So use of sedatives have to be carefully managed and this is probably why residential/independent living staff are very reluctant to administer and monitor them. For anything other than the very light sedation as I have described, there has to be a full crash team at hand and they can only be administered under the guidance of an anaesthetist. At the current time, many day surgery units at hospitals are not available for non emergency use due to covid.So.... we worked with our LD nurse to work out the scenario which had the best chance of success. This was very light sedation (though it is debatable if this had any impact) and our son sat in the car in the car park of the vaccination centre in his usual car harness with his iPad. A GP agreed to come out to the car park at an exact arranged time, open the car door, vaccinate him while my husband held his hands and shut the car door without a fuss. It took a huge amount of planning on our part with lots of practice runs but I am thrilled to say that he was successfully vaccinated thanks to a whole team approach. 🙂
Thanks for explaining that. I wonder if we would be able to attempt similar. We did try the car park but it was deemed unsafe at the time, where I was parked just wasn't safe.
I totally understand your frustration.
I don’t know a good answer to give. Other than you need to perhaps get a learning disability nurse to help you sort it out.
My son is severely autistic and he has had he’s vaccine 💉. What he couldn’t cope with was going to the clinic and have it there as to busy many people and he certainly wouldn’t be able to sit there for 15 minutes, and also he’s Carers 3 of them wouldn’t be able to go with him.
So they came to the house to give it to him. He had the AZ one. No issues whatsoever But then he likes hospitals and he likes doctors he goes to the doctor and does really well. He had to have an ECG this week he went to Gp to have it there he was happy as Larry. Yet he has severe behaviour and self harming anywhere else. Go figure.
I am pleased your son has been vaccinated, that must be a huge relief.
I have had LDT nurse involved for the past 7 weeks now, ( 2nd February). It has taken 7 weeks to get round to actually releasing a vaccine for him, then yesterday (19th March) the nurse came to administer AZ vaccine to him, but no sedation.
They were very close, but were not successful in administering it and one AZ doze was waisted and binned due to this.
I am now being told he may need to wait until he has to be sedated for dental treatment or anything else and they will try to carry it out at the same time.
This is particularly frustrating on 2 levels
1. He does not need any dental treatment and even if he did it would take a few months to get an appointment anyway and that would only commence following his next routine check up (9th April). How does this fit with the stated importance of being vaccinated as soon as possible,
2. If it is cost related, then one vaccine has already been waisted due to the reluctance to use sedation, knowing that his past medical history shows that sedation will be required.
Hi I’ve had similar problems my Autistic 44 yr old son is terrified of needles.Has inky had blood test when under anaesthesia fir dental with. I’ve written to Astra Zeneca and everyone I can think of about a nasal dose but no plans for this as no plan to vaccinate children. Luckily for us the GP now responsible for my son gave us the nasal flu vaccine just before Xmas. We are now having sedation for Astra Zeneca this Friday. We are going to our surgery and it will be done in the car park.We have had to say it’s similar to the medication that he has when in a major seizure. We are misleading him and avoiding talk of needles. Just it won’t hurt , no blood, no plaster. I’m hoping it goes ok . I understand your plight.
Hello Dunn62 .I am sorry to hear of your troubles and I cant really help you however if the people around your son are all careful then your son should not be as much at risk of getting covid 19.To be really poorly with this infection you need to be infected with a high dose from someone coughing at you or have repeated doses as is the case of health workers on the front line.I am certain the you and your family will protect your son from harm.Also younger people have a more robust immune response and can fight infections better than the oldies such as me,,I am 70, and as an oldie I have a regular flu jab each year but all the young people dont! and thats because they have a better immune system. I am aware that the Government have put people with a learning disability in a clinically vulnerable group but that could be because they cant separate the vulnerable from the not so vulnerable. A person with downs syndrome may be vulnerable because of heart disease and some times(and I apologise to anyone who takes offence but weight control is also hard for a person with learning disabilities ) also have obesity which puts them in a higher risk.I know your son could have kidney problems but my son who has severe learning disabilities(and is overweight) is younger and fitter than me and although he has had the vaccination I would be reassured that without it he would have been just fine simply because we are careful..The government are correct about the vaccine is better than having covid but there are some people who are concerned about clots etc and there is no more risk to that than any other vaccine and the chances are about as low or lower than in the general public without the vaccine.
I hope if you still want the vaccine that you get it sorted out soon.Please keep us informed because we all have an interest in how other people are managing.Take care. x
I hear you, The exact same is happening here. I asked for my daughter to be sedated after a failed attempt to get near her for the vaccine. I've been told no, and to try and persuade her to have it! My daughter has pacs1 syndrome and autism.
What an awful situation for you and your son. I have contacted my colleagues who work in the campaigns team and the policy team to see how they can help.
Please do contact our helpline if you would like to talk to someone about this on 0808 808 1111 or email helpline@mencap.org.uk. There is more information about our helpline here -
Hello Dunn62. I hope that you have been able to resolve your Son's vaccine problem. I write to you as my brother also has RTS and its so unusual to find many other people with it. I speak with many carers on Instagram with RTS family members but most aren't in this country. My brother lives with me and my family now as my Mum passed away last Oct. He has spent most of his life in and out of hospitals so fortunately doesn't have any problems with needles but I can imagine how difficult it would be with a phobia of needles. I hope you are all staying well. Jackie
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