If your M.E. causes communication difficulties and problems with understanding or remembering information, health and social care providers in England now have a legal obligation to help make this easier for you.
The Accessible Information Standard means that people with disabilities must have access to information that they can understand and any communication support they might require.
I’ve summarised how this might help you and what you have a right to expect. This applies to England but there may be something similar in other parts of the UK.
The Accessible Information Standard is part of the NHS Health & Social Care Act 2010. This means that all health and social care services you use which are provided or commissioned by the NHS have to adhere to it by law, and it must be fully in use by 31st July, 2016. In healthcare, some examples of when the Accessible Information Standard applies could be when you use your GP surgery, pharmacy, specialists, dentists and opticians.
The five steps of the Accessible Information Standard are:
- Ask people if they have information or communication needs and how to meet those
- Record those needs clearly in electronic or paper-based systems
- Highlight the person’s record so their needs and how they should be met are highly visible
- Share info about the person’s needs with other NHS and social care providers, with consent
- Act to make sure people get their accessible information and communication support
In a community pharmacy setting, for example, the sorts of things that might be affected by communication difficulties could be: giving in and receiving your prescription or when it is delivered to your home; and consultations, such as advising you about medication, Medicines Use Reviews and the New Medicine Service
As with many long term health problems, M.E. is a hidden illness, so you might need to let the staff at the organisation know that you have communication and information needs because they might not realise, especially if your symptoms fluctuate. It can be difficult to get the help we’re entitled to when we’re ill, so you might find it helpful to look at Action for M.E.‘s booklet with advice on our rights and how to go about communicating our needs effectively, Nothing about M.E. without me: a self-advocacy resource
I know from when I wrote Pharmacy access to medical records that some people feel uncomfortable about disclosing their diagnosis to their pharmacy but the Accessible Information Standard is for your own specific needs rather than a particular diagnosis. Your diagnosis isn’t included in the summary of your records viewable by pharmacists so it’s up to you whether you tell them about it. If you don’t want to share your diagnosis, you could just saying something like, “my health problems mean I can have difficulties with communication”, so that they know the Accessible Information Standard should apply to you, and they’ll ask you about the sort of help you need.
You’ll only need to give this information once because the staff will add this information to your record and it will flash up whenever they access your notes in future. They can also add this to your shared NHS record so that you don’t need to repeat it all everywhere you go but they need your consent to do this. If the place you’re going uses paper-based case notes, such as specialists, the information has to be displayed prominently on those too. If your condition worsens, or your communication preferences change, let them know so they can update your records.
What difficulties with communicating and using information do you have and what ways can these be overcome? This will be useful to ask yourself, and the answers will be different for each and every one of us with M.E. but here are some examples at a pharmacy:
You might have difficulties with the physical act of communicating because of the energy needed to speak and perhaps your voice is weak. You might find it difficult thinking of words and forming sentences (known as aphasia), due to “brain fog”. This means you might find it easier to text or email than have a phone call, or use a screen reader (text-to-speech) to speak for you, or find it easier to talk in the quiet of the pharmacy’s consultation room, especially if noise affects your M.E. and your concentration. You might have difficulty following a conversation and need more time for consultations.
With information, perhaps you have difficulty remembering important things due to concentration and memory problems. This could be overcome by the staff providing a clear and brief written summary, perhaps with bullet points or a diagram to take away with you.
As I say, your difficulties and your preferences for communicating and receiving information are unique to you. Perhaps you have a health professional who makes these things easier for you which you would like to share. I’d also be interested to know how you get on if you’re going to make use of the Accessible Information Standard.
If you would like to know more: