GP learning disabilities register

[PurpleSprinkles]

Has anyone had difficulties getting someone added to the register? My GP is aware of my 17 year old son's autism and severe learning difficulties so I rang to check if he is on their register, the receptionists had never heard of it, they promised to get back to me but they honestly didn't have a clue.

[Jofisher]

Dear lord that’s worrying

[PurpleSprinkles in reply to Jofisher]

I am so pleased you think so, I am so upset by it to be honest x

[49Twister]

WOW you say receptionists so more than one of them haven't heard of it. That really is worrying, I was thinking maybe whoever you spoke to had just started working there and was unfamiliar with it. If they don't get back to you ask to speak to the GP pronto!!!

[BenjiB]

Honestly until I read it on here I’d never heard of it either. My son is 22 with severe autism and severe learning disabilities. I have no idea if he’s on it.

[PurpleSprinkles in reply to BenjiB]

I think it is worth checking, there is some useful information on the Mencap website which might help,

[ApertSibling]

I am having problems trying to get my sister on the LD register too. The GP surgery say her LD is (too) mild. They referred the request to the local Learning Disability Partnership because the GP surgery say they either hold the register or decide who’s on the register (I’m not sure which) but the LDP rejected the request for assessment as they said my sister doesn’t require living support because of her LD. So because she can live independently (with some support from me), she is not thought to have severe enough learning disabilities to be on the register. I am going to keep trying but it’s difficult to understand how the LD register works with this particular surgery / LD partnership or if they know or understand the current guidelines. Like you, I’ve been really concerned about this but not sure how to address it. I think I will challenge the Learning Disability Partnership and if I don’t get anywhere, I’ll write to the CCG. FYI I received the following helpful advice from Learning Disability England:

“ There was a big push pre pandemic and again last Autumn by NHSE for GPs to increase the number of people identified as having a learning disability on their register and improve the quality of the register. This is a key action in reducing health inequalities so there is policy and practice guidance to support it. The guidance to GPs is here england.nhs.uk/wp-content/u...

I am not sure what the Partnership told you but the decision on GP register inclusion is not tied directly to social care eligibility so should not be about service management but improving health and closing the health inequalities gap people experience as it allows her to be flagged for reasonable adjustments, a health check etc etc. The inclusion tool at the end of that guidance may to be helpful to you and your sister.

Mencap have some guides on getting on the register linked to their work on vaccination that may be helpful - mencap.org.uk/advice-and-su... “

[lucycoles]

Hi. I am a nurse and I work in general practice. Every surgery has to have a list of of all patients who have an official learning disability. The degree of learning disability is irrelevant. This is to ensure they have their annual health check etc.

[SpeedyH]

Hi there. I think the confusion often arises with receptionists because the guidance often refers to a learning disability ‘register’ which paints a picture of a physical file with everyone listed on it. The way patients are ‘registered’ as having a learning disability is that there is a code to indicate this which is added to their medical record. There are also codes to identify Carers etc and this code is what public heath used for deciding eligibility for vaccines etc. GPs can then extract up to date lists of people filtered by the various codes whenever they need to. I would advise you to make an appointment with a GP rather than talking to a receptionist and ask that the individuals medical record is coded as having a learning disability. You could take your diagnosis paperwork along as well to ensure that it gets added to the record.

[eneOthestate47 in reply to SpeedyH]

I have a positive diagnosis for "Asperger Syndrome" and am registered at a diversity GP surgery which had notices around the surgery confirming there status, but the practice has changed GPs and staff and the notices have been removed, and the staff do not know about autism and I am treated as a nuisance because I have difficullty explaining if I have a problem so it is something like the Mencap treat me well campaign as the staff are not trained about autism or learning disability.

Norman.

[PurpleSprinkles in reply to eneOthestate47]

Norman that must be so frustrating for you, I hope they reassess their practices and understanding.

[PurpleSprinkles in reply to SpeedyH]

Thank you, that makes sense x

[Kieran_Mencap]

Thank you for your query.

For information about the Learning Disability Register please see:

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

I hope this helps

Kind Regards

Kieran

[PurpleSprinkles in reply to Kieran_Mencap]

Thank you x

[BrightonRocker]

I managed to get my son on the Learning Disability Register so that he could get his COVID jab but, it was a battle. I only knew about the LDR thanks to a Radio 4 interview with a Mencap representative. Apart from getting the COVID jab, being on the register has done nothing to improve my son’s access to his GP.

My son lives quite independently, has two part time jobs and can use public transport but, can’t access health care without help from his parents. I have requested a meeting with the GP practice but, am not optimistic that this will make much difference.

It is a scandal that the death rate from COVID is four times higher amongst people with learning disabilities than the population as a whole.

This is not a surprise to me as accessing health services is made so difficult.

[PurpleSprinkles in reply to BrightonRocker]

I am pleased he got a jab, but so sorry for the lack of support otherwise, I've been trying to get an appointment to speak to a GP for over 2 weeks now, even though I ring within a minute or so when they open I'm too late all appointments have gone by the time I reach the end of the cue

[49Twister in reply to BrightonRocker]

If he is on the register he is entitled to an annual health check, is he at least accessing this service. Due to Covid this obviously didn’t happen last year but my son has had his for this year. This is a good opportunity to have bloods done etc and discuss any issues.

[BrightonRocker in reply to 49Twister]

Thanks for your response. Is your son’s health check done by his GP?All the guidance I have seen says GP does health check but, my son only gets check by practice nurse which is generally a waste of time. They check his physical health which is good anyway but, they are not interested in his mental health which has been poor for some years and particularly during lockdown.

[49Twister in reply to BrightonRocker]

Yes the GP always does the health check, bloods are usually done by the nurse. Don’t know why the nurse does it as nurses are restricted. The dr usually examines his tummy? Does anyone go with your son ? I usually go with mine as he has severe learning disabilities.

[BrightonRocker in reply to 49Twister]

Yes we go with our son but, we won’t always be able to do so. We would like him to build on his independence but, it is frustrating that access to health care is made so difficult.

[AES71]

I had a nightmare getting my daughter added but that was because despite the GP knowing her very well they had to have written proof that she has a learning disability from a professional.I wrote directly to my GP who then rang me. The GP should be able to give you exactly what you need.

Mencap are a good source of advice but it’s down to the surgery acting.

Good luck!

[AndyC89]

I'm a former Learning Disabilities support worker, I know that a lot of people have had trouble getting onto the register without an official diagnosis but there have been cases where patients have been added to it by mistake like myself for example. I've recieved texts and easy read letters through the post stating I need the 4th Covid jab when I'm not legally entitled to it. I have made a complaint to NHS England since I have no idea what's going on, I have previously mentioned it to my GP and they can't do anything as they don't know why I'm on the Learning Disabilities Register either, they did contact one of the organisations that deals with the diagnosis but no one has gotten back to them.

The NHS is supposed to be saving money but something like this results in them wasting money and if they fail to fix the problem then it's going to damage the NHS even more. The NHS can't afford to waste money.

[PurpleSprinkles in reply to AndyC89]

So true, the system doesn't work properly.