learning disabled but not on flu jab list - Mencap

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learning disabled but not on flu jab list

outdoorsy1 profile image

Every year it is the same - I get called to have a flu jab - as I am a carer and I have asthma and then I book a jab for my son at the same time. I always have a bit of a tussle with reception who try to tell me he isn't on the list. I explain he is entitled, and after a bit of a discussion, we make and appointment and he gets the jab.

Clearly,as I wont always be here, he needs to be able to cope with this himself yet I think, due to his learning disability, he wouldnt remember and if he did would get turned away by reception and he wouldn't get it. No wonder so many people with LD dont have the jab!

I called the gp and spoke to him and asked for this to be sorted. The GP told me tht as my son was not on the strong asthma inhaler, he wasn't entitled to the flu jab. I explained that he WAS entitled as he has a learning disability - he is registered as having a LD there. GP said that was a new thing. I told him I had looked it up and it came into place in 2014 - ( in other words they have been failing my son for 6 years... although i didnt say that bit out loud) he said he would look into it and come back to me

He hasn't

I fear the covid vaccination will be based on the gp stating who needs it and this kind of shows they dont think he does. As my son is under 50 it could be a long while before he got it. How can i fight this further? what can you do when the government advises one thing but the local gp surgery dont do it?

10 Replies

Hello

You are quite right that you are both entitled to a free flu jab - you (as a carer) and your son (as he has a learning disability).

I have asked our campaigns and policy teams to have a look at your post to see what they would suggest. You are right to have spoken to your GP directly in the first instance.

For anyone else reading this, here is some more information (including easy read documents) about getting a flu jab - mencap.org.uk/advice-and-su...

We are still waiting for more information about the COVID-19 vaccine - I will share in on here as soon as I get it.

Best wishes

Sarah

Hello,

I'm from the campaigns team and can confirm, as Sarah said, that your son is eligible for a free flu jab.

There is a helpful video here from NHS England that explains how people with a learning disability are eligible for a free flu vaccine from GPs.

youtube.com/watch?v=eZ1vDai...

This website from the NHS also clearly states that people with a learning disability are eligible for the free flu vaccine from GPs.

nhs.uk/conditions/vaccinati...

And here are some Easy Read guides that you could go through with your son:

gov.uk/government/publicati...

It's very worrying that your GP has misunderstood this and doesn't seem to know about the learning disability register either.

We have lots of useful information about the LD register on our website:

mencap.org.uk/advice-and-su...

If your son is on the GP's Learning Disability Register, then he should be getting an Annual Health Check from the GP every year. But sadly, some GPs forget to offer this so you may need to remind them every year.

My advice would be for you to download this template letter here:

mencap.org.uk/sites/default...

Support your son to fill in the letter with his details and what extra support he needs when going to the GP. This extra support is also called 'reasonable adjustments' and the Equality Act 2010 says services, such as GPs, must make reasonable adjustments for disabled people. For example, double appointments and information in Easy Read.

You could then send that letter to the GP and the Practice Manager along with a note to remind the GP surgery that your son is eligible for the free flu vaccine every year as stated by NHS England. You could mention in your letter the link to the NHS website which confirms this and that Mencap has confirmed this too. Remind them that it's their duty to proactively offer this to their LD patients - parents and carers shouldn't have to chase this up every year.

Also, in case your son dislikes needles, he is entitled to ask for it as a nasal spray instead of an injection. The video linked above mentions this too. If the GP surgery say no to the nasal spray, remind them that it's your son's right to a nasal spray as a reasonable adjustment.

I share your concern about the number of people with LD missing out on the flu jab. You may want to ask the GP surgery to confirm that a) they have a LD register, b) offer annual health checks to people with a learning disability and c) will ensure that ALL their patients with a learning disability will now be offered the free flu vaccine. You're welcome to suggest to them that they email us on helpline@mencap.org.uk if they need clarification on this.

As for the Covid-19 vaccine, we are working hard behind the scenes to ensure people with a learning disability are given higher priority for this. Here's our statement: mencap.org.uk/press-release...

I hope that helps. Feel free to email me on campaigns@mencap.org.uk if the links don't work for you.

Best wishes,

Victoria

Just seen the video doesn't work on this page. So go to YouTube and search for 'Flu vaccinations for people with a learning disability'. It's the video published by NHS England on 30th October 2020.

thanks for this - yes, writing seems to be the answer. The odd thing is my son is registered at the practice as learning disabled, he has an annual health check and the last one - which was Feb ish they suggested he had the pneumonia jab given his condition etc ( which he had) . But it seems there is a block regarding the flu jab, and speaking to the g.p. himself he said that my son was not entitled as only had mild asthma ( reception said exactly the same so it is obviously what they all believe and repeat parrot like) and I said he was entitled to flu jab on grounds of learning disability, he said he d have to look into that and there was some debate about their being a specific read code for it - which I know there is as I have read the NHS pages! I said I was being bombarded with messages from the government that people with LD should have flu jab and I thought 'well someone should tell the surgery then' and it turns out that someone is me... He said the policy was new.. and I told him I had looked it up and it came into place in 2014... that was met with silence.. followed by him promising to look into it.

When I tried to follow it up, reception wouldnt put me through and told me the best thing was to phone up every August and see if flu jabs are being arranged. I told them this was less than satisfactory as there needs to be a system in place that doesn't depend on me having to fight for him.

It seems very obvious that this isn't a one off where my son has been missed out accidentally - but this is policy and so anyone with LD in the area has probably been missed out too.

I am very concerned that the same criteria will be used to decide if my son gets the covid vaccine.

thank you for the links, I will write to the practice as you suggest

Charlie2750 profile image
Charlie2750Community friend in reply to outdoorsy1

Hi outdoorsy1 my son gets a flu jab every year but like you I had to "fight" for this.He has a severe learning disability and he takes levothyroxin because of poor thyroid function caused by Hashimotos disease.However the receptionists were not at first helpful but I insisted that he had compromised immunity and they said they would ask the gp.

Our doctor said of course and there was then never an issue.

Unfortunately sometimes the front of house receptionists are very difficult to get past.

He has had it for the last 5 years or more.When I make an appointment I always make one for him.

It is very unfair that your son is being failed.The re are a lot of people that refuse to have flu jabs because of being so called poorly afterwards.You can have a slight reaction but this is the body developing the immune cells that cause this reaction.Because your son is having the jab he is helping the people who refuse to have the jab through what is called "herd immunity" which says that a small lot of people are protected by their friends not being able to pass on the flu because they dont get the flu because they have had the jab.

Keep asserting your sons right for the better good of the community.

good luck

😀

It sounds like you're doing all the right things - and that you're more on the ball than the GP surgery!

A couple of other suggestions - you could ask the surgery if they have a Patient Participation Group that you could join, so you could help raise these issues with the GP surgery on a longer term basis. Might be a good way to ensure they're doing the right things for all their patients with LD. But I appreciate that this would time consuming and a longer term thing. Here's some info about Patient Participation Groups: patients4nhs.org.uk/patient...

You could also contact your local Healthwatch and let them know what's happening and if they have any advice: healthwatch.co.uk/

Good luck - I know it's exhausting having to fight for things like this. Your son is very lucky to have you.

I have 2 adult children with learning disabilities. They insist on going out each day and socialise with others who find social distancing an impossible concept to adhere to. I've not hugged either of them since March but often witness hugs and kisses freely exchanged amongst their pals.I strongly believe vaccination within this group would have a significant effect on reducing Covid community transmission. It should also be remembered many such adults are living with vulnerable aged parents .

It must be so hard not being able to hug your two children yourself. I understand your concerns. I hope I can reassure you that we're doing everything we can to pressure the government into putting everyone with a learning disability on the priority list for the covid vaccine. Our CEO, Edel Harris, has directly raised this with the Health Minister and both her and our Director or Communications have been on the news recently talking about it. Thank you for sharing your experiences with us.

This is good to know, I’ve been signing every petition out there regarding the virus, vaccines etc for people with learning disabilities. I must say it was great to see them even mentioned for the first time on the news recently ( it was probably what you’ve just mentioned Victoria) I was so taken aback I didn’t catch who was discussing it. My son and his staff were tested for the first time last week, negative I might add, but should have been happening sooner. His staff have also started being vaccinated which is good news, but I would feel a lot happier if my son and his housemate were also vaccinated, giving them the same protection. I too have hardly had contact since March and been unable to hug him, I just hope when this is over he doesn’t think hugs are against the law!!😍

When we had our flu jabs at the pharmacy asked about my young person with diss and he agreed to do it !!! She has a needle phobia but we did manage to get her to have it

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