Lyndsey, from our helpline, was here to answer questions about the coronavirus vaccine.
This event is now closed, but please read Lyndsey's posts for advice and information about the vaccine.
Mencap have lots of accessible information about coronavirus and the vaccine here - mencap.org.uk/vaccine
You can also call Mencap's helpline on 0808 808 1111 (10am to 3pm, Monday to Friday) or email helpline@mencap.org.uk. There is also an online form you can use here - mencap.org.uk/contact/conta...
Best wishes
Sarah
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My name is Lyndsey, i work on the Mencap Learning Disability Helpline and I'm the ask the Expert for next week.
I hope you are all staying as safe as possible and looking after you & your families wellbeing during this difficult and long year we have all had.
Please do share any stories of your COVID and if possible Vaccine experience so far.
I look forward to answering as much as I can any questions that come in, it's an ever changing virus with ever changing rules & regulations being set and for what feels like a never ending story.
Hello. My daughter has autism, severe learning difficulties and has a chronic fear of needles. We have been doing a desensitisation programme for the last 4 years with little success, we got as far as applying the tourniquet and have reached stalemate. Her last blood test was done under GA. My concern is how she is going to get the vaccine? She has her flu vaccine by nasal drops but I understand this is not available with the covid vaccine? Many thanks x
My son is in similar situation. I've heard a rumour that Astra Zeneca, who make the nasal spray flu vaccine, are going to do the same with Covid vac - but it's only hearsay at present
I'm so sorry your daughter has such a fear, it certainly seems to be something that can affect people with a Learning Disability, people on the ASD and people who just in general have this acute fear of needles. I would speak with your local LD Team & her GP on how best to go about her getting the Vaccine. I will of course update this feed as much as I can and if any new changes come in, I will certainly update you all.🌸
Thank you. I'm just hoping they quickly develop a nasal vaccine as its the only way I can see her becoming protected. Her last blood tests were done under GA, hence she doesn't get them very often,despite being on multiple drugs for epilepsy. Thank you again x
Hi Michellelouie87 I am sorry to hear that your daughter has a fear of needles and it is worrying. I am working as a vaccinator and when people say they don't want to see the needle we actually draw up the small half a ml dose from the bottle without them watching and provided consent is given I walk around and give the injection without their seeing the needle.Provided the vaccine is not cold there is only minimal if any discomfort.and no pain on pushing the plunger.Some people have said that it was better than the flu jab and one person asked had we done it yet!Have you had the vaccination yet?Blood tests are so different because it is a more exacting skill to find a vein and a slightly larger needle but the needle only punctures the skin and does not go in the full length so does look scarier. Taking blood is more painful however my son who has learning disabilities gives a sample for his thyroid quite regularly but does not mind and normally does not flinch.It also depends on the nurse taking the blood of course.Some are better than others.Some have good days. Do you think if you went to have your vaccine and your daughter went along would she understand?The other thing is that whilst it would be ideal for everybody to have a vaccine all the young children will not be having it, so by making sure other people had the vaccine may be enough to protect your daughter and she may then not be at risk.There seems to be people that get the virus who get very poorly but they may be so poorly because of age and underlying health problems.I will stick my neck out now and suggest that lots of people with a learning disability may be healthier than the older people and have a better immune system to fight the virus.I have met several people while vaccinating who have had the virus and recovered so it appears scary but the good news is that there are thousands of people that don't get poorly.
Hi Lyndsay. Thank you fir hosting this event. My daughter who is 33 has autism, epilepsy and severe learning disabilities. She has an extreme fear of needles so she would not be able to have the COVID vaccine unless it was administered a different way. She has her flu vaccine delivered by nasal drops. Any idea if this is likely to be available at some point? Thank you x
Hi Lyndsey. My 25yr old son has autism, learning difficulties & has seizures related to but not diagnosed as epilepsy. His Mum has concerns about him having the vaccine due to potential side effects & a lack of testing on people with disabilities. Is there any advice or information available to help guide us to make a decision?
Hello my son has Downs syndrome. Hes had first vaccine. My husband and I are worried if we get it what happens to him. Bad planning at least one of us should get it asap. Bad planning I also care for my 83 year old mum. Hes had open heart surgery mid Covid our son. Paranoid mum
Does your son have a social worker? You could contact Adult Social Services to explain your concerns and worries, should yourself or your husband become unwell. How is your son since Heart Surgery?
I wondered when you and your husband are due your vaccine - have you heard? If you are over 65, or have a health condition, you may get it very soon.
The other thing to check is that you are registered as a carer with your GP. All carers are in Group 6 on the priority list. Groups 5 and 6 are next on the list in most areas so there shouldn't be a long list. Here is a bit more about carers and the vaccination on the Carers UK website - carersuk.org/help-and-advic...
Hi Lyndsey my daughter she has severe autism and learning disability she’s over 20 year what we do for her she don’t like Needle we don’t understand what we do for her coronavirus vaccine please let me know if any other option for her thank you so much
Hi , My 36year old son has severe learning disabilities, challenging behaviour, speech and language disorders, OCD, He lives with me full time , his challenging behaviour is a big worry and if he kicks of at a hub for the vaccine it will cause no end of problemsas he is a large man with a lot of strength, Im trying to get an alternative venue for his jab , he is not on the vunerable list at our surgery so he will be way down the list, I wanted get some information for when he is called up ?, I have been in touch with mencap , our GP surgery , Mp , local hospital learning disabilities team all recommended by each contact , no one has an answer , I feel that he is the only one with this problem so makes me feel more isolated than I am already , his daycare hasnt been open at all since last March so I've had no support , I wonder when they will open again , they say they are waiting to hear from Public health? no updates or road map , Learning Disabled have been forgotten in all this aswell as unpaid carers who when they recieve thier state pension , carers allowance is stopped so no recognition for 24/7 care of extremely vunerable Adult
Hi hope your able to get some decent advice from the expert. I know from the gov.uk website people with Down’s syndrome and severe learning disabilities are in group 6. I believe from tomorrow they are starting with group 5 which is over 65’s then over 60’s, then it will be group 6, which I presume your son is in, my son will be also he is 46. Unfortunately it seems to vary depending on areas, gp’s, other health issues, as seen on various posts on HU. I know there has been many petitions etc asking for people with learning disabilities to be given priority but nothing seems to have come to fruition. Hope you get some answers.
Thankyou for your reply , I didn't want to jump any ques , I was just trying to find out if there was an alternative venue to get the vaccine due to my sons challenging behaviour ? My GP offered to come out to my car to give him his flu jab last year but he is away at the moment , the receptionist and locum do not know my son so wasnt aware of the problem ? He is not on the vunerable list , all his day care is closed so we will stay in the que . I am 67 so I probably hear soon for myself . Just dread the thought of him kicking off in front of all those people. I try to keep him as calm as possible in all sorts of situations which doesnt always work ..
It’s really hard maybe Lindsay will be able to advise. Was really good of your GP to come to your car for the flu vaccine, would be good if he could do the same for Covid but I know they have to be kept at a certain low temperature.Hope he’s back soon, but you would think someone at the surgery could advise you. It’s just a nightmare and sounds tough for you so take care, we will get through this.
Good Morning, I'm so sorry you haven't had some clarity to getting your son the Vaccine in the least stressful way possible. Many GP's are offering to do the Vaccine jabs within their practice in a less stressful environment but unfortunately this is something people will need to speak to them about as each case needs to treated individually. Hopefully once more people are vaccinated, the Day Centres may be able to shed some light on when and how they can safely open to restore some of the much needed support for all families that use them.
Just a thought - have you seen this from the Challenging Behaviour Foundation - Accessibility and reasonable adjustments for individuals with severe learning disabilities whose behaviour challenges
Hi, I have a son who has severe and profound learning disabilities, he is fifteen years old but will turn 16 in November this year. He would then fit category 6 for the vaccine. Will he be contacted after his birthday for the jab ? Thanks
As I am sure you are aware of the below information. I would contact your GP or speak with the LD Nurse on when it is likely he will be contacted. Once 16 I would say the NHS will get a notification from the GP Surgery and in turn they will contact you.
Individuals aged 16-64 with ‘severe and profound learning disability’ are consideredto have an underlying health condition which puts them at higher risk of serious disease
and mortality, and so will be given the vaccine before the general population, and
I have an 18 Yr old autistic son with severe learning disability, non verbal and challenging behaviour.
I wanted to sort out where he would be having his vaccine beforehand. He would not cope in a busy and noisy vaccine hub.
I contacted the Learning Disability Primary Care Liaison Team and was given short shrift and told they couldn't help and to phone my doctors.
Which I did, and was told they weren't vaccinating in any surgeries, it was either the hub or if he was housebound they do it at home, but he wasn't on their list as housebound. She said the hub was his only option.
I said surely there must be others in the same situation as my son, and she replied she hadn't come across any.
I am so sorry that you are having this difficulty. Please see the link provided by Sarah F, I have provided the link for it too and I hope you find it useful.
Hi Skye_Bear,Thank you for your help. I went on to contact the IATT senior nurse for support, she then contacted the Primary Care Liaison Nurse in our area, who has since contacted me and will be helping to support my son, so hopefully we will have a plan of action soon!
I will be answering some more questions later on today as The Helpline is very busy today, just this one for the nasal enquiries
Is there a nasal spray vaccination? - No, and we’ve been advised not to encourage people to wait for a reasonably adjusted version – as we understand there is not a ‘reasonably adjusted version’ in development at present.
Does the government have a plan for those with disabilities who are needle phobic? - We know that NHS England have encouraged primary care teams to deliver vaccines for those that cannot attend a big vaccination centre. They are also encouraging reasonable adjustments such as ensuring no waiting, staff that know the person well and cream to numb the area. We have asked for more information about how this has been communicated with primary care teams. We are asking for more information about the other adjustments that can be made.
Can sedation be used to administer the vaccine - There may be extra support needed from the LD team to identify the less restrictive solution.
We have asked NHS England and Public Health England for more information about how sedation could be used, and how safe it is.
Ideally speak with your LD Team if possible to convey your fears/worries for administering the vaccine. It's so difficult especially when there is a phobia/fear of needles.
Please do share any stories of your journey with the Vaccine and what helped you received to make reasonable adjustments. Has anyone had the Vaccine? How were you or they after?
Will jump on again soon to answer some more later on.
We really need to put more, much much more, pressure on TV channels to stop showing constant footage of needles going into arms. It is not encouraging anyone with needle phobias, it is scaring them to death, maybe literally.
I do agree that it might put people off. It would be worth passing this feedback to the government. A good way to do this would be to contact your MP to let them know your concerns.
Hya, I have taken it up with my MP, but feel as if I am only one voice and that is simply not enough to be deemed important.
This should be a nationwide voice and I have absolutely no idea why it is not being pushed from all angles. We all want to see everyone getting the vaccine after all. Yet I am the only person that has ever raised this topic as far as I am aware.
"In relation to the COVID vaccination program, I believe GP surgeries have been contacting patients and inviting them to have the vaccine.
In relation to capacity issues in respect of the vaccination this would need to be a decision in A's Best Interests – this is a clinical decision and would need to be a person with medical background to make this decision, it would rest with the medical profession to orchestrate this and make appropriate changes to meet his specific needs."
Hi
I am enquiring whether there needs to be a Best Interests decision for my adult son who has no mental capacity in getting vaccinated.
If the decision is that he is not getting vaccinated due to his severe challenging behaviour, this means he is more at risk of getting ill with the Covid virus.
Take a look at the Challenging behaviour Foundation link Sarah has provided. This has some really useful information on. Page 4 is about best interests.
I hope you can find a solution for your son, have you spoken with his Learning Disability Nurse?
Unfortunately my son does not have a Learning Disability Nurse or Community Nurse.
I am hoping my son is able to get his vaccine with the right approach. He had been able to have all his childhood vaccinations successfully as the school nurse was very experienced on how to vaccinate people like my son. I feel it is extremely important he gets vaccinated due to the high level of Covid deaths among disabled people.
Please do look at contacting The Learning Disability Team, usually located near the NHS hospital. You can ask to speak to a one of the Learning Disability Nurse to convey any of your concerns/worries. It's always good to make contact so that they are aware of your son.
If you just do a google search and type The learning disability team (Your town/area you live) and this should give your their details to make contact.
My son is 31, he has a learning disability but, lives independently and has two part time jobs in a school (when schools are open). He is currently so afraid of contracting COVID that he has not left his house for weeks. He also has mental health problems.I just listened to Edel Harris on the Today programme.
I think she said that everyone with learning disabilities in Kent will be in Priority Group 6 for the vaccine.
My son lives in Kent however, his GP says he is not in a priority group. What should I do to get him included?
According to the gov.uk group 6 is people with Downs Syndrome and profound and severe learning disabilities.It is getting confusing now as some areas seem to be changing this to include all people with learning disabilities, which again is unfair as it shouldn’t depend on postcode. I would get in touch with your mp to clarify the situation in your area.
Here is the information I have at the moment, but as soon as this changes and Sarah or myself are able to give you some clarity we will update on here.
People with learning disabilities fall into priority group six with chronic neurological disease as their underlying health condition, but this only includes individuals with cerebral palsy, severe or profound learning disabilities, or Down’s Syndrome.
The JVCI recommendations state that many younger adults in residential care settings will be eligible for vaccination in group six because they fall into one of the clinical risk groups such as learning disabilities.
You could speak with your sons Learning Disability Nurse to see what information they have been given.
Sorry I couldn't offer you the answer today, will keep you posted.
Thanks Lynsey. I contacted the Kent Clinical Commissioning Group this morning and they responded very quickly to say that in Kent everyone with a learning disability is in Priority Group 6. After a brief battle with his GP (who he has been a patient of for 5 years) they confirmed he is in Group 6 and he is getting his first vaccine on Monday. Glad Kent have recognised the high COVID mortality amongst those with learning disabilities and acted whilst the Government are still resisting. A bit of a postcode lottery but, if the pressure is kept up on Government, I predict another U turn.
I am so glad you have his vaccination booked in. 😀
You can see there is some information about this on the Kent and Medway CCG website here - kentandmedwayccg.nhs.uk/new...
If anyone else is in a similar position in Kent, we're expecting people to be contacted during the next few weeks for Group 6. As it's only been a few days since the announcement was made it may take a while to get things moving, and the messages to get through. We'd advise following up in a week or so if you haven't heard anything,
Hi my 44 yr old son has been offered the vaccine but we’ve declined as he’s terrified of needles. He has had the nasal flu vaccine which he tolerated. I’ve emailed Astra Zeneca about nasal Covid but they aren’t planning to make this. Could Mencap push for this? My lone request will not mean anything but maybe an influential organisation like Mencap may have more influence. I know he’s not the only one with this problem , perhaps Astra Zeneca don’t understand the issue fir people with Learning Disability/Autism. This needs to be highlighted and pushed for now not left for months . We know how vulnerable this group of people are. Please can Mencap consider making this a priority.
Please see my above post regarding the Nasal vaccine. Unfortunately this isn't something that is likely to happen soon. If you also see the information that we attached to this feed from the Challenging Behaviour Foundation. It has some really useful information on it regarding needle phobias etc.
This might be a silly question, but are the vaccines the same. I know different companies make different ones, that need to be kept cold at varying temperatures. But other than that is there a better one, and is there a choice?
It's a good question but also not an easy one to answer as it's what's offered. The best thing to do is look at the ones that are currently offered and if you are unsure after reading the links provided then I would take the reassurance that The vaccines approved for use in the UK have met strict standards of safety, quality and effectiveness set out by the independent Medicines and Healthcare products Regulatory Agency (MHRA).
Any coronavirus vaccine that is approved must go through all the clinical trials and safety checks all other licensed medicines go through. The MHRA follows international standards of safety.
To find out more about the vaccines approved in the UK, see:
Not sure it has answered your question but I hope it enables you to take a further look into these links I've provided I hope it will give you some answers.
My sister with Down’s syndrome had her first AstraZeneca jab over 2 weeks ago and GP said will be 2 weeks to take effect but her provider insists it is 3 weeks and won’t let me her take out
Unfortunately that is a very tricky one as it's placing a GP off against their care provider. This is the information from the Government Website:-
Will the vaccine protect you?
The COVID-19 vaccine that you have had has been shown to reduce the chance of you suffering from COVID-19 disease. Each vaccine has been tested in more than 20,000 people in several different countries and shown to be safe.
It may take a week or two for your body to build up some protection from the first dose of vaccine. Like all medicines, no vaccine is completely effective, so you should continue to take recommended precautions to avoid infection. Some people may still get COVID-19 despite having a vaccination, but this should be less severe.
Here is the link for the full breakdown of what happens after your vaccination:-
It seems to take between 2 and 3 weeks for the vaccines to work. I suspect that your sister’s provider is just being cautious. It would be worth talking to them so you have something booked in ready for the moment 3 weeks passes.
You can also call our Learning Disability Helpline on 0808 808 1111 (10am to 3pm, Monday to Friday) if you would like to talk this through with someone.
I just wanted to say a massive Thank you to everyone who has got involved with the Ask the Expert this week. I hope I have been able to offer as many of you as I could with some useful links, information and guidelines for the COVID Vaccine.
I hope you all stay safe and well and here's to brighter days and hopefully more light at the end of what has been a very long tunnel.
I hope you found this event about the coronavirus vaccine helpful. A big thank you to everyone who joined in, and also to Lyndsey for being our expert. We were amazed by the response to the event, and the wide range of questions posted on here.
This topic is now closed, but please do read the posts for advice and information for anything to do with the coronavirus vaccine.
Lyndsey has done another post called Are you, your family member, friend or person you care for on the Learning Disability Register?-healthunlocked.com/mencap/p...
If you want to talk to someone about the vaccine you can call Mencap's helpline on 0808 808 1111 (10am to 3pm, Monday to Friday) or email helpline@mencap.org.uk. There is also an online form you can use here - mencap.org.uk/contact/conta...
Best wishes
Sarah
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