Tell the NHS your experiences with health information and communication

Sign with the NHS logoSix months ago NHS England launched its Accessible Information Standard (AIS) and they are asking the public and health professionals whether they have used the AIS and if there have been any problems.

I wrote a blog post about this when the policy came into force, and how some people with M.E. might find the AIS helpful when interacting with health professionals, which you can read here  but in a nutshell, if you have a condition which affects things like speaking, following a conversation or remembering information you are told, the health professionals you come into contact with have to take this into account and make consultations and appointments easier for you in the way that you find helps you.

Whether you’ve made use of this policy when you’ve had contact with health professionals or not it is still worth telling them what you think because the survey also asks if you have felt able to ask for this sort of help. The closing date is 10th March.

NHS England will use survey responses to review:

  • how organisations have implemented the AIS
  • the impact of the AIS, including organisations’ and service users’ experiences
  • any aspects of the AIS which need updating or clarifying

I’ve seen references to the AIS in waiting rooms but they seemed to make the assumption that it’s only people who are deaf, blind or have learning disabilities that the AIS applies to, possibly because these were the examples given in the policy and training, so they’ve unintentionally stuck as the criteria. It was off-putting though so I think this could do with being clarified, as AIS applies based on someone’s needs rather than being limited to those with particular diagnoses.

I have found the AIS useful as a patient on a couple of occasions so I’ve completed the survey. I was lucky that the health professional I was going to see knew me well enough to be able to tell when my cognitive fatigue (or brain-fog) was really affecting my communication and that I would have found it difficult to remember what we were talking about later. She made a list of the things we were discussing and explained that she was doing this because she could tell I was having a bad brain-fog day. It was really useful to have a list and also a relief that someone understood my needs without me having to explain or justify why I need help.

The trouble with brain-fog is that when it’s bad it’s even more difficult to explain what it’s like and ask for help. So there’s a communication barrier preventing being able to ask for the barrier to be removed. Perhaps everyone should be asked their communication preferences, whether they have difficulties or not. That would be less stigmatising because we wouldn’t have to specifically ask for help and have to justify why we needed it. I’m sure I’m not alone in feeling worried about whether a health professional would understand and believe me that I need this sort of help. This reminds me of an explanation of equality and equity I recently saw on Twitter, shown below.

Equality vs. Equity

Go to the NHS England web page with links to the survey

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