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

Hi Op. Sorry to hear about the issues you’re having. In order to comply with the Equality Act 2010, the GP surgery must provide a reasonable adjustment for you, taking into account your disability, to ensure that you’re not put at a substantial disadvantage compared with those who do not have your particular disability. This doesn’t necessarily mean that the surgery is required to put in place any adjustment that a person requests, however it must put in place one that reasonably removes the barriers you face. The adjustment they’ve suggested- communicating via family- doesn’t seem to remove the barriers you face, as you may well not want to communicate all of your personal health issues via family. Who would want to give sensitive or embarrassing information to family members if this can be helped? The surgery has pushed back on the basis that they do not routinely give out GP’s email addresses. Well, in this case, they should either make an exception for you or create a second email address that you can contact.

If you were to send your GP surgery a ‘letter before action’ threatening to bring a county court claim for discrimination under the Equality Act 2010, I’m sure they will pull their finger out. Better still, you could contact the Equality and Human Rights Commission for advice and their lawyers may offer to help you draft the letter www.equalityhumanrights.com/en/contact-us

I should also mention that the above type of claim can attract claims for compensation for injury to feelings. You could also ask the EHRC for some advice on this.

'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?'

Clearly those with chronic medical problems and disabilities must have the exact same ability at all times op! Can see how atos/IAS get it so wrong all the time if some of the comments here represent how disablist people can be.

can you get a home visit?

OP - definitely seek support of an advocate. You may find this useful: www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/someone-to-speak-up-for-you-advocate/

'And you conveniently ignored previous suggestions about learning sign language.'

Yes works well over the phone. Even if the op learnt BSL (which isn't easy) and by pure luck her gp was proficient in BSL it would seem a of an bit extreme solution when just issuing her with an email contact would suffice.

@Yeahnahmum

Often you cant type more then 50-100 words. .. except for today. Because you typed sooo much. Even though you said that your original post took you a week...

Seems a bit odd... op.. odd and untrue. ..
And you conveniently ignored previous suggestions about learning sign language.

@Yeahnahmum, my typing quota daily has to be rationed as I have a limit which if I go beyond increases the symptoms of my severe ME - including but not limited to head pain, nerve pain, sensory sensitivity, increased flu like symptoms. Until I got this illness I would find it hard to understand how typing could do that but going above my activity limits across various activities including typing brings on post exertional symptom exacerbation.

This limit though varies - on a better day I can do a few paragraphs before my symptoms become too severe to continue, other days it will be less. On my worse days I can’t type more than a few words without symptom exacerbation. I had a few weeks this summer when I couldn’t type more than a few sentences daily. It then can suddenly improve and ar the moment my typing quota is thankfully larger. Go over my typing limits too much over a few days and it becomes much reduced again. Occasionally because I have started a written communication I continue typing when my symptoms are getting worse but to finish I do it. I will always pay though in increased symptoms for a few days and must stay off typing until I can do a bit more. I can’t speak for the OP but they may experience something similar.

It’s really difficult that some people jump to conclusions and don’t understand what it means to live with variable limits.

I work at a GP surgery. Our GPs do not allow email consultations but we do have a relatively new system which is available at all surgeries in my area so I had assumed it was a national thing? It is called eConsult, it is done via a secure link from the surgery website. There are questions you have to answer & space to free type, there is also an option to attach photos. The surgery can then respond go you via a link in the eConsult. I wonder if this system would be beneficial to you? It would be worth asking your surgery if they have this facility or are due to roll it out soon. Alternatively, I would write to the practice manager & ask for a system to be put in place that works for you & your doctor

Ps also to add if the OP also has an illness which includes limited energy both mental and physical and which if expended exacerbates all symptoms it may be they don’t have enough energy to learn sign language.

Many practices have some form of e-consultation, such as eConsult/AskmyGP where a non-urgent request/communication can each the duty doctor that day, as mentioned above.

For more urgent/immediate problems, or ones that might require examination, a way of managing with video consulting (possibly typing your questions/answers?) would be useful. This allows immediate interaction with the GP and they can then decide if it would be better for you to be seen in person.

For issues such as 'living will' type discussions - you could sent a typed letter in advance and have the discussion by video link?

Home visits, as suggested above, are less realistic in COVID times

Yes, Truffle 123, and sometimes the family might be the sensitive problem.

A home visit isn't a solution I'm afraid. I can't speak enough discuss anything. Visitors are prohibitively stressful and exhausting. There's pressure not to cancel. I've had at least 4 significant deteriorations from keeping appointments with HCPs which I wasn't well enough for.

Could you please answer my earlier question - if there is an emergency or urgent situation, you can't plan those to happen on "good days". So how do you communicate with medical professionals then? Because I appreciate that you want what you want, and nothing else will do. That clearly isn't going to happen because the doctors have said that they cannot and will not have this discussion by (protracted) email; and I am sorry, but I have to agree with them. I would never have any discussion about a Living Will (or many other things) by email - not only is the communication not secure, but I have no way of knowing that it is you that I am having the discussion with. Sensitive and confidential medical discussions should not be conducted by email. And I would be appalled at any doctor agreeing to what you are asking. At a very basic level - you have heard of Harold Shipman? Doctors have to be very careful about discussing any medical issue, but especially end of life care. For all your doctor knows, they are talking to some other person that is not acting on your behalf or with your consent.

If this is what you want, I think it is very unlikely that you will get it. So you must find a way to compromise. Everything that has been suggested here, you have rejected. It sounds like this is the same issue for the GP. You have determined that they will communicate on this by email, and you will not brook any disgreement. They don't have to, and they would be remarkably foolish if they did. I don't care what Scope have said - if they think that a doctor should be discussing end of life care by email with whoever happens to claim to be you, they are insane. No court in the land will enforce what you are demanding - and actually, opinions aside, you can only force an issue of reasonable adjustments by going to court. How are you going to instruct a lawyer and manage a court case when you can't settle this? And there is a high probability you would lose the case, when it is eventually heard, which may be years from now!

You need to rethink your approach.

Spot on on both counts, Guylan.

I tell you what, @Yeahnahmum, apparently it takes 60 to 90 hours to learn basic sign language, let alone phrases like "clinically assisted nutrition and hydration" or "what does dying of kidney failure feel like?" You go off and become fluent enough to discuss a complex chronic disease in a foreign language which involves waving your hands around while a) cognitively impaired and b) unable even to rest your arms upright on your elbows for any length of time, even on your best days, and then try speaking that language to a doctor who doesn't understand it, realising that you'll have to hire an interpreter and co-ordinate that with your doctor appointments, realising that the whole enterprise is at least 100 times harder than the thing that is already too difficult for you, and you get back to me on that plan.

Besides, it's not necessary I know basic Morse code, .. / -.-. .- -. / .- ..- ... - / -... .-.. .. -. -.- / .- - / - .... .

(Please don't report these kinds of posts on my account, I'm enjoying this now.)

@TrolleyProblem
Did you see my link to NHS advocacy?
That would be your best bet in the circumstances.

Thank you yes just finishing arguing and will do the reading

Could you please answer my earlier question - if there is an emergency or urgent situation, you can't plan those to happen on "good days". So how do you communicate with medical professionals then? Because I appreciate that you want what you want, and nothing else will do.

If there is no other way or in an emergency obviously my parents have communicated as much as they can for me (my father is a retired doctor), I've done the rest and I've sucked up the damage exhaustion does to my health. But if harm is avoidable I would prefer to avoid it.

That clearly isn't going to happen because the doctors have said that they cannot and will not have this discussion by (protracted) email; and I am sorry, but I have to agree with them.

I'm sorry, no, if you RTHT they haven't, I am still working out how to phrase the request. When I mentioned a living will the secretary replied send it to us so we can update your records.

And please, if you're going to say things like "you want what you want, and nothing else will do" or "you will not brook any disgreement", please, try that in a forum of ME patients and see how absurd they find it. We are not an entitled bunch. We are a pretty demoralised bunch. I haven't met a single person who doesn't have some degree of iatrogenic trauma. If a doctor does me the courtesy of understanding or and caring about me I break down sobbing in gratitude. That's my reality. I assure you I'm ashamed of this illness, I'm embarrassed to speak its name, I've supplicated and appeased and apologised for existing around any doctor I've been fortunate enough to have professional contact with for the last twenty years. So maybe you might consider rethinking your conclusion there.

*RTFT. Dammit. That was almost good.

What exactly are you looking to get out of all of this? If you can only write 50-100 words on many days and doing more leaves you too exhausted for days, why spend 'weeks' composing a complaint to an anonymous forum and then spend that day writing over 1500 words in responses to people shooting down all of their ideas?

Your situation sounds very hard. If you are as limited as you describe, then perhaps CBT or other counselling (or book reading, if that interaction is too much) could help you work out how to use the limited energy you have in the most beneficial manner for you. Your time would be far better served by writing to the surgery itself, or to your MP, or accepting that you'll need an advocate but then using your 1500 words of energy to reignite your blog instead or do something else that brings you joy.

Because people wouldn't accept a simple "no, that doesn't work" for an answer.

This is not my first rodeo. I've been doing Disabled As Fuck for twenty years. Please don't assume you know better than I do how I work or what brings me joy.

I didn't make any assumptions about how you work or what brings you joy - just asked what you were looking for from this. Presumably if you've invested weeks of time in the original AIBU post and then written enough in a short period that you will need to be recovering for days, you feel this IS worth it, but from the outside it's hard to see the benefit as it doesn't change your situation nor does it seem to have made you very happy.

It gives me an external perspective. I don't regret this thread. I regret singing "Thank God I'm Handsome" into the phone to check whether I can talk above a whisper.

OP, give eConsult a try via the NHS app. I’ve found it a very efficient way of contacting my GP and getting what I need without a face-to-face appointment.

I have, yes. They misunderstood "I can't do phone appointments" to mean "I'd like a phone appointment". But they did say that in an eConsult message so we may have established a way forward.

Is it possible to have more home appointments?

However, instead of exerting yourself into physical and cognitive/mental exhaustion and fatigue trying to communicate everything all at once, could you perhaps write out in advance all that you want to say,.

Then on the day you only have to write shorter responses to any questions the Dr has for you?

Include your issues and complaints as to how you have been treated and made to feel, and maybe they can come up with a solution for the times in between these home visits.

Perhaps still have a family member there to advocate anyway just in case you become too overwhelmed to continue?

I myself suffer with a severe neurological disability too and am on a similar path where I too am going to lose my ability to speak.

I already have swallowing problems so that may be soon.

I'm also housebound, and get that physical and mental fatigue communicating in person or reading and writing. So I completely understand how horrendous this is.

They definitely have to treat you with the respect and dignity you deserve and make accommodations.

If email is not possible then they need to come up with an alternative that works for you.

I really feel for you OP, Best of luck.