To want email appointments with my GP due to my disability?

[TrolleyProblem]

I'm disabled, housebound and I can't physically speak, I can only communicate by email. The GP receptionists say they're not really supposed to arrange email consultations because they're not as immediate as a telephoneconsultation (which is however impossible for me); they can only pass on my request and then it's up to the doctor whether to grant an email consultation or not.

So every time I need the GP, either the doctor communicates with me indirectly via my family members (with whom I also have to communicate by email), or I email the receptionists with my problem and if I'm lucky they tell the doctor or forward them my email and then the doctor tells the receptionists what to reply. The doctor won't email me directly "because doctors aren't supposed to give their work emails to patients" (though a previous GP did communicate with me through their NHS email) and it's therefore impossible to have any discussion with them.

This situation has been going on for years. Back when I could physically speak they refused to schedule proper phone appointments, the doctor would call me whenever they had a spare couple of minutes between their real appointments, so again I didn't get a full appointment. It's frustrating and makes me feel like a second class citizen.

I would like it recognised that email consultation is my only option and therefore it is not "up to the doctor" to grant it, it's a reasonable adjustment as per the Equality Act 2010 and my legal right. Scope have told me it's not ok for me to be treated this way; I would also like to know please if the practice's treatment of me up till now is illegal or just kind of not good enough.

TIA

Ignorant replies here. I communicate with consultants and junior doctors over email and I don't even have disabilities like the OP's, it's just more convenient.

My mum does this with her GP.

OP, I would write to the practice manager and cite reasonable adjustments etc.

Are you being entirely honest with your GP OP? You've typed hundreds of words on here today

If you're non-verbal and can't communicate easily by writing presumably you know sign language? How on earth do you manage to communicate otherwise?

Presumably your condition means you will have had contact with a Dr previously. How did they conduct the consultation then?

Could you perhaps get whoever's typing for you today to help out?

How many times a week/month do you to speak to the GP?

Is it for repeat prescriptions or separate issues?

I've contacted them 5 times in 20 months, I think. (Repeat scrips are automated.) I'm very weak but not suffering much so my needs are primarily to be left in peace.

Email worked very well with the previous GP because there is no effective treatment for my condition so I have no other HCPs and I receive no treatment except for painkillers and sometimes first-line anxiolytics, and so there is not much for me to ask about and not a huge amount of medical history to refresh themselves about. I would ask "please may I try x at a higher dose, please may I try the pill for the following reason, should I do anything about this weird spot," minor things like that. This GP wanted to do more to help me, chase people up etc., but there's nobody to chase.

@woodpigeons Yes!!! Exactly!!! They have E-consult, except that I write on the form "I am disabled and can't speak on the phone" and the surgery emails the next day informing me they've booked me a phone appointment for that afternoon.

What's your diagnosis/es? I'm wondering if there's a charity for your condition/s that may be able to help? I assume there have been others in a similar situation before.

@ZoeTurtle

Ignorant replies here. I communicate with consultants and junior doctors over email and I don't even have disabilities like the OP's, it's just more convenient.

My mum does this with her GP.

OP, I would write to the practice manager and cite reasonable adjustments etc.

If they do that then it is because it’s part of a safe system that allows it. Although I would say using NHSmail is not an good forum for managing remote consultations. It’s ok for general communication but not a consultation. This needs an enclosed system.

The OPs practice doesn’t have that system.

What's your diagnosis/es? I'm wondering if there's a charity for your condition/s that may be able to help?

OP stated being advised by SCOPE whose primary focus is CP.

Might it be possible to request a video consultation (Attend anywhere/Microsoft Teams)? There's the facility to type into a chat function and then the GP isn't giving their email address and the consultation would be in real time. Good luck trying to get it sorted.

@WorraLiberty

Could you perhaps get whoever's typing for you today to help out?

Perhaps the op would like to access health care independently? Imagine that.

Op contact the practice manager they have a duty of care to facilitate this for you. If you use e consults they can still follow up with texts, it doesn't have to be phone calls.

Have you brought up the Accessible Information Standard with your practice? You can download an overview of how they must meet your needs here: www.england.nhs.uk/publication/accessible-information-standard-overview-20172018/

Perhaps the op would like to access health care independently? Imagine that.

Perhaps the OP would like to answer the suggestion herself? Imagine that.

Mind blown 🤯

Your practice may well be breaking the law in not making reasonable adjustments to enable you to access healthcare.

I would suggest getting advice from a disability rights organisation - there is normally a local one. But try Disability Rights or the Disability Rights commission.

Then writing a letter to your practice with all the correct legal information. If this does not work try your MP.

It may be you will need to have someone else speak for you/interpret but you should be able to get an independent advocate who will be fully qualified and trained in finding out from you want YOU really want to say and will be completely confidential.

Please do raise the AIS with them. They are required to comply with it. Our local practices had 'mystery shopper' calls and visits to check they were compliant.

Reasonable adjustment isn’t “give them what they want” though reasonable is the key word and people, and the practise, have provided many reasons why email isn’t practical so they need to work together to find an alternative that works all around.

Like people say things like attends anywhere allow text entry so would be a possible solution

'Perhaps the OP would like to answer the suggestion herself? Imagine that.'

Oh so you think we must all talk directly to the op only and not comment on other poster's suggestions?

I'll say it again, people have every right to be to access health care confidentially and independently without needing to rely on people to 'help'.

I'll say it again, people have every right to be to access health care confidentially and independently without needing to rely on people to 'help'.

You can say it until you're blue in the face but all that matters here is what the OP may think of the suggestion.

@OverTheRubicon

If it truly takes you a day to write an email then how would that work? It does need to be a conversation.

You don't specify the reasons you need all these adjustments, but with volume concerns etc it suggests that there might be some underlying mental health issues, are you getting these addressed to minimise limitation to your life?

Firstly, I appreciate email may not be possible from a GPDR angle, but that aside I presume the OP would write the email in stages and not send until completed. I appreciate if the GP responds fairly quickly it could take a while for the OP to respond as it can take time to complete an email.

As to your claim that the volume issues may suggest a mental health issue, there are physical conditions that cause noise sensitivity. My situation is not so different to the OP’s, though, thankfully, not quite so restricted. I have severe ME and have been bedridden now for nearly 8 years. I have chronic head pain and talking on the phone increases my head pain, tinnitus and noise sensitivity. Thankfully, I can type - though needs to be paced - and speak so my carer has permission to do telephone consultations with my GP who also once a year does a home visit. I have experienced too often medical professionals trying to reframe my sensory input symptoms as due to mental health. With time and as more studies are showing the pathology in ME - need larger studies still - that is changing but it’s frustrating. I am not dismissing mental health problems but the cause for my noise sensitivity is physical and talking therapy will not cure it.

OP, I am sorry for all you are going through. I hope some solution can be found.

Are you the OP Highhorse?

'Are you the OP Highhorse?'

What? Err, no. I dont think its helpful to suggest she 'gets whoever is helping her to sort it out'. Implying either that the op is managing just fine with typing, or suggesting all disabled people miraculously have attendants to hand.

@GetOffYourHighHorse

'Perhaps the OP would like to answer the suggestion herself? Imagine that.'

Oh so you think we must all talk directly to the op only and not comment on other poster's suggestions?

I'll say it again, people have every right to be to access health care confidentially and independently without needing to rely on people to 'help'.

The most common use of advocacy is for people who don’t speak English. It is ridiculous to think HCP need to speak 100 languages fluently to be able to consult in their native tongue. Sometimes the advocate is the only reasonable adjustment.

All access pathways have to include the need to speak or meet face to face. Some allow for more digital interaction than others. But whether the triage is by phone, messenger or AI they will all include verbal, camera or face to face where this is needed. They is part of safety and safeguarding.

You seem to be managing to type a lot more than 100 words a day on here. I appreciate you said you’d taken days to write your first post, but have posted several more posts since then.

How do you normally communicate with people?

Increasingly I don't. It's quite frustrating actually.

To all the people who've asked about my claims of typing incapacity: I did say that often I can't type more than maybe 50-100 words a day. Sometimes it's a bit more. Sometimes I have rare and unpredictable good days which I normally spend on computer games and other vices, but before I lose the capacity to communicate and care for myself entirely I need to make a living will, and I want to discuss it with the people who are actually going to be putting in or taking out the feeding tubes. So I needed to get advice on how to persuade them to spend more than three minutes on me. Whether that's none of your business or vital information I should have mentioned from the beginning I don't know.

The thing is, nobody else can relay my experience to a doctor unless I relay it all to my spokesperson first, and, as @Guylan will know, a lot of it is unfathomable if you haven't experienced it. So that feels like a bit of a Tristram Shandy mission.

Anyway thank you everyone, this has been helpful, and I will consider an advocate. When Scope said that I thought they meant a lawyer :D

Are you being entirely honest with your GP OP? You've typed hundreds of words on here today

Do you think I'm telling them I can't speak when I really can because I suffer from a kind of inverse Munchausen's where I enjoy feeling disabled and ignored?