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

Sorry I hadn't finished reading all replies when I first posted.

I can see home appointments are not ideal or most of the time possible.

I can relate again there. I went from fairly regular interaction with my Dr's and other roles in my healthcare team. I also had/have a nurse/advocate for my main diagnosis (my other multiple chronic disabilities aside) because of my serious diagnosis I get that help via a charity.

I got too exhausted with every home visit and can not hold conversation or even just listening to the other person takes it out of me physically and mentally to the point of my body and mind coming to a crashing halt. As well as this I have sleep cycle problems where my circadian rhythm changed me to be a mostly nocturnal being and sleep long hours most of the day. Which means I struggle to be awake for day time appointments. Then I get my bad and even worse days/weeks/ months where I am completely bed bound and unable to partake in the slightest of task, so trying to see health professionals during this is impossible , and then even on your better days you can become acutely too unwell to keep an appointment. We cannot predict how we will be at any given hour let alone any given day to make it possible to make and keep these much needed appointments! And from what you described I'm sure you know this all too well (sadly)

I too am supposed to be making my living will and end of life decisions. I am extremely lucky to have my partner as my full time career. I was supposed to legally make him my power of attorney but I have been too ill for years to manage that either. I did get him as a named advocate at dr's.

As I deteriorate I know my speech and language therapist and Occupational therapist etc will assess me and help me with alternative communication wether it be a machine type thing or just cards/pictures words. Do you have anything like that in place to help your communication difficulties? And perhaps a charity that covers your condition for a go to person that helps with all this stuff instead of solely relying on your family members?

There is great advice, support and mutual understanding in many private Facebook group forums for people with specific disabilities, chronic conditions, chronic pain etc. You can read and write at your own pace. And won't face the same wonder from those who don't quite get it, how you can do something one day but not the next with your abilities. It's so variable and unpredictable. Those who live it, understand without needing to waste precious energy constantly explaining your limitations and emotions, or answering their many questions.

Sorry for this very long text, my cognitive disabilities make me unable to put my thoughts coherently into order and filter out the non essential, or how to say all this in shorter sentences!

partner as full time *carer not career. Oops

I got too exhausted with every home visit and can not hold conversation or even just listening to the other person takes it out of me physically and mentally to the point of my body and mind coming to a crashing halt. As well as this I have sleep cycle problems where my circadian rhythm changed me to be a mostly nocturnal being and sleep long hours most of the day. Which means I struggle to be awake for day time appointments. Then I get my bad and even worse days/weeks/ months where I am completely bed bound and unable to partake in the slightest of task, so trying to see health professionals during this is impossible , and then even on your better days you can become acutely too unwell to keep an appointment. We cannot predict how we will be at any given hour let alone any given day to make it possible to make and keep these much needed appointments! And from what you described I'm sure you know this all too well (sadly)

Very well put, thank you @BensonStabler:)

Those who live it, understand without needing to waste precious energy constantly explaining your limitations and emotions, or answering their many questions.

I know, but I needed to understand the perspective of busy and ignorant people who (understandably) don't have the time to understand if I'm going to get anywhere with them.

GP’s should also offer video consultations and these to my knowledge all have chat functions.

Presuming you book appointments in advance maybe you could write down your concerns and questions as you would in an email and then copy and paste in during the appointment slot?

I am a HCP and we are advised not to give our emails out and to use the main one for our service which goes via our admin for a variety of reasons!

@TrolleyProblem, sorry it has taken me a few days to reply. I am glad Bensonstabler has been able to make some possible suggestions. I thought you probably had v severe ME from the description of your symptoms and how you are affected. Please don’t feel ashamed. The poor level of functioning and awful symptoms in v severe ME is profound and it takes a lot of inner strength to endure.

The shame as you know belongs to the medical authorities and the group of mainly psychs who hijacked the illness in the late 80s and wrongly reframed it from a biomedical illness to a predominantly behavioural based illness that they falsely claimed could be cured through graded exercise and CBT to change alleged false illness beliefs that activity above the patient’s limits made their symptoms and functioning worse. The cruelty was as you know graded exercise was the worse thing to prescribe as unlike most illnesses exercise makes the illness worse due to emerging evidence showing energy metabolism dysfunction. The CBT in the way it was used was gaslighting.

I hope you can find a solution to being able to communicate with your GP. Providing medical care for someone with v severe ME is so tricky as the patient’s symptoms makes communication face to face and even via phone, email or Skype so v difficult.

It’s difficult for patient and for medical people to be fair to navigate how
to provide medical support to the most severely affected. The irony of ME is the sicker you are the less able you are to access medical support.

Please don’t feel the need to reply, save your v limited energy and typing quota. I wish you all the best.

@BensonStabler, thank you for articulating the problems well.

@TrolleyProblem, one final thing, I don’t know whether you are aware of the 25% ME group charity which is a charity for the 25% of people with severe to very severe ME. If you are a member you can ask for help from their paid advocate.

Of course I know the problem remains of v limited physical capacity to interact with someone else but they will understand how the illness affects the body and try and work with you.