This is a letter we sent to our GP Surgery quite some time ago

This is mainly here to provide extended context to the post about the lead up to our autism assessment appointments.
Reference post found here

Dear Sir/Madam, 
It is nearly a calendar year since we last saw in person a member of the NHS, and we are struggling to understand how we will ever be able to access one in the future. Lockdown and subsequent restrictions, have removed our coping mechanisms. Where in the past we would go to access people face to face, all availability for this in context of any support has been removed. It has taken the removal of that, for us to be able to identify why we do not make phone/video calls and have navigated our whole life by minimising these interactions. 
The problem we have is that we can identify our communication difficulties/needs, but have no way of getting anybody to engage with us in a way that allows us to work around these. We have approached private services to help with this, but they require NHS support,so we are stuck in a Catch 22 style scenario. We need to investigate our communication needs in order to get them recognised by third parties so they will accommodate them. In order to do that, we need to access services that require us to communicate in ways that are extremely difficult and lock us out. 
The surgery is a prime example of this. All communication must be through eConsult, at which point we are led through a confusing path that feels like it is forever trying to disrupt our ability to communicate. 
We never interacted with the NHS until very recently, and as such have found it an extremely difficult system to involve ourselves with. It seems to require past experience to decode how/why things should happen. 
It feels like information flows only one way. We have recently shared some quite personal and sensitive information that we wrote up for a private service. Yet, we have had no confirmation of receipt or any sort of acknowledgement. Likewise, after our interaction with a psychologist, it seems that the NHS saw fit to copy in various people at the end, but not to include us in that communication. Even when trying to request our patient notes, we were told we need to put it in writing. We were not told WHAT to put in writing, implied knowledge of internal systems seemed to be expected yet again. (We have so far resisted a Subject Access Request under the Data Protection Act, as we feel that we shouldn’t have to resort to such drastic measures, but we are on the tipping point at the moment.) 
Despite the anger that the more information we share, the more honest we are with regard to how we think and interact with the world, the less likely we are to be able to access any sort of support, we are here again sharing information in an effort to try. 
We require face to face communication in person, we are unable to read situations and model social interactions without the context. We model based on analysis of multiple factors:

  • What people are verbally saying at the time.
  • What they have said in the past.
  • What their body language is saying.
  • What their current actions are at the time.
  • What their past actions have been.
  • Our knowledge/research of the system/structure they operate in and how that may constrain guide their actions.

These things are rarely consistent with each other, and we blend these to predict how we should act and what outcomes of situations are, based on a balance of probabilities. 
Video calls are difficult, partly because they cause us a problem when we have to view an image of ourselves. They also present us with at best a head/shoulders and we lose all context that body language and environment provides us. Added to that, eye movement is deeply unnatural as the person is looking at the screen, which changes their presentation. 
Telephone calls are much more difficult, for the reason that they remove far more of that context. They often have the added difficulty in the fact that they are often unscheduled and from unknown numbers. We will not answer unknown numbers as a rule, as withholding the number is already signalling to us that the person contacting is hiding something from us. 
Text based communication is a reasonable substitute, but it has to be in a way where we can consider the accuracy and clarity of what we present. We are extremely verbose, because we struggle to express ourselves in terms that others understand. We do not think like most people, and find that we need to be very precise in what we write, otherwise they make assumptions based on the false premise that we are thinking/acting in a way they would in that situation. 
The eConsult system is extremely unwieldy for us. It places many arbitrary constraints on how we communicate, and forces us through a confusing path. It feels like a self selecting system. It works, because those that can use it, will. Anyone that cannot, is locked out of the system. There is no other way offered, so those that cannot make it function will be invisible. 
Despite our frustration/anger/sadness/anxiety (we struggle to identify emotions) we are trying to keep this again, in the spirit of co-operation. 
So, we are making a set of simple requests.

  • Could you please respond via writing or email (In the past this was ignored and we had an unsolicited phone call)
  • Can you advise, given the outline of how we communicate above, we can interact with the surgery in a way the is manageable for us.
  • Can you advise, if you cannot find any way to adapt/respond in regard to the previous point, how long this will be the case for and what other methods of accessing NHS care are available for someone that has communication/social difficulties.

Thank you in advance for your considered response.