Are you, your family member, friend or person you c... - Mencap


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Are you, your family member, friend or person you care for on the Learning Disability Register?

Skye_Bear profile image

Going to the Doctor is not always easy if you have a learning disability.

By joining the Learning Disability register you can get:-

•Extra support when you visit your doctor – including making an appointment

•Support to understand your doctor and your information.

•More time to talk about how you are feeling

You may also be able to have an Annual Health Check.

Please follow the link provided to see our downloadable resources available to you on our Mencap Website:-

We've created some helpful resources to help you or the people you support get on the learning disability register, including:

•an easy read guide for people with a learning disability

•a guide for people who support someone with a learning disability

•a template letter to give to your doctor

•Awareness posters to print off and display.

This has come to light more recently with the COVID Vaccinations and people have not been notified when the person with a learning disability and falls under the extremely clinically vulnerable group or extremely vulnerable group. The GP’s information gets sent over to the NHS who in turn send out the letters or texts to say an appointment has been booked or be given a link to book their vaccination appointment.

Has anyone found this out or was not aware of this?

Lyndsey M

17 Replies

All well and good but difficult when you have a battle to prove your daughter should be on the register. I quoted Mencap’s words but GP insisting on evidence my daughter has IQ of less than 60 when I know of others who clearly have higher IQ on their GP Register.Why is my GP following different guidelines?

It’s heartbreaking. Everything is a battle and I’m tired!

Skye_Bear profile image
Skye_BearExpert in reply to AES71

Hi, I am so sorry you are facing this difficulty. The IQ range is normally 70 and below. I would suggest speaking to your GP's practice manager or alternatively look at changing your GP as it shouldn't be a battle.

I really hope you are able to get this resolved.

Lyndsey M

AES71 profile image
AES71 in reply to Skye_Bear

Thank you for that. Our Social Worker said 70 also but GP adamant it’s 60. Do you know if that’s written anywhere?

Hi Lyndsey,

I wasn’t aware that it even existed. My son is fifteen and has severe / profound multiple learning disabilities and we knew from before he was a year old that this was the case. As a parent very little information has been forthcoming from his medical appointments and social services learning disabilities team that he is under. In fact I am often stunned by how little his learning disabilities social services team understand even the basics of learning disabilities and yet they are advising on how we should deal with issues such as behaviour or sleep for example and make decisions on provision of services such as respite with so little knowledge and without a clue what lives are really like for people with a learning disability and their carers. In fact worryingly they often give incorrect advice as regards to service provision , the law etc which is wrong and if we didn’t have access to charities such as Mencap, DCP, SWAN and Contact we would not be aware of this.

The vast majority of information that I obtain comes from the various charities that support children with disabilities and I don’t know how we would cope without them we are so grateful for their support.

Skye_Bear profile image
Skye_BearExpert in reply to Bluebeaker

It truly is frustrating that this information isn't given out more widely. Please do contact our Helpline on freephone 0808 808 1111 or email if you have any issues or problems that you encounter.

Thank goodness for charities but at the same time in an ideal world, we wouldn't be needed.

Take care

Lyndsey M

Bluebeaker profile image
Bluebeaker in reply to Skye_Bear

Thank you Lyndsey

My son has an annual health check which we assumed was due to his learning disability however, he was not categorised by the the GP as having a Learning Disability when it came to the COVID vaccination (he lives in Kent).He gets an annual health check with a nurse which is largely a waste of time. Should the GP carry out the annual check?

Yes the GP should be carrying out the health check. My son has just had his and it’s always done by the GP. Weight, BP, listened to his chest. asked various questions regarding his health and it’s an opportunity to bring up any concerns you might have. It is fairly basic and I agree the nurse would be perfectly qualified regarding BP weight etc but I believe it should be done by the GP for obvious reasons. They usually have blood tests too to rule out pre diabetes, cholesterol levels etc which is usually done by the nurse at another appt if necessary.

For anyone living in Lancashire the Learning Disability Team udertake the assessment of whether someone meets the criteria of having Learning disabilities, certainly under our local authority

This is a self referral system in our part of Lancashire, although the GP can do the referral using the same form. We are fortunate in our part of Lancashire that the we have very good relationships with both health and social services.

I phoned the drs to ask if my young person with LD is eligible and they booked an appt there and then for Tuesday !! 😘

My son is 22 with severe autism and severe learning disabilities. I’ve never heard of the learning disability register so have no idea if he’s on it.

BenjiB profile image
BenjiB in reply to BenjiB

He used to have a yearly medical when he was at school. That was done at school by the learning disabilities team. He’s also had the covid vaccine as he’s at a residential college.

I rang my GP today to find out if my Son was on the GP learning disabilities register and I'm actually tearful because they had no idea one exists so my 17 year old has no access to COVID vaccines or other help that should be available I said he should be offered an annual health check...they were really sorry but said they didn't know anything about either thing and will ring me back tomorrow. It is not a small practice with 5 GP partners and 2 permanent GP's

There should be a practice manager who should be fully aware. There has to be a register. A GP may talk to you by phone. Be persistent. It is a legal register.

Thank you, I will contact them again x

Our son is 40 and lives with us. When he was at school and college there was always someone to talk to and places for advice. As time any support seems to disappear. We are fortunate in there being a small local group who provide knowledge and support and the local Mencap have been excellent. Try to take things a little at a time. Sorting things with the GP practice would give reassurance to you and help the practice get organised.

We became aware of the register through Jo Wiley's campaign. Once we talked to the GP practice they sorted quite quickly and our son was soon offered the jab. Learning disability is little understood and ignored if possible by government. We have found persistence is the only way and finding people such as a local mencap group is very helpful.

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