Today is a very exciting day, as I can now officially say that the NHS England Accessible Information Standard has been approved. The Accessible Information Standard sets out what health and social care providers need to do to make sure that they provide information in accessible formats and communication support for appointments where appropriate. More information about the Standard; what is and how it works can be found on our website
We know that only 69% of people with a dual sensory loss feel confident in managing their own health conditions* and from speaking to many deafblind people during my time at Sense I know that information in accessible formats and access to appropriate communication support can have a huge impact when it comes to confidence in managing health. Often the solutions are very simple, for example receiving an appointment letter via email instead of in print so that the person receiving the letter can use the screen reader software on their computer to read it.
As part of the development of the Standard we have hosted a number of consultation events and I ran a session at our MySense event last year. I remember talking to a lady called Sharon** about her experiences of nearly missing an appointment with her GP because the appointment letter they had sent was in small print with the date of the appointment highlighted; when she scanned it with her screen reader the date was unreadable. When Sharon attended the appointment, there wasn’t an interpreter booked so she wasn’t able to communicate effectively with the doctor – she left not fully understanding their diagnosis and with some medication that she wasn’t sure how to take, so she didn’t take it.
Unfortunately, stories like Sharon’s are all too common but the good news is that the new Standard should see an end to many of the problems she faced; Sharon will be able to tell her GP what format she needs information in and that she needs an interpreter for her appointments. This information will be stored on her record and her GP will have to make sure that they meet her needs. Also, if Sharon needs to be referred to the hospital, the GP will have to include her information and communication needs in the referral letter so that the hospital will also be able to communicate with her in an appropriate and accessible way.
I have been involved in the development of this Standard since I started at Sense almost 2 years ago now and it has been a big part of the work I’ve been doing. A key element of the Standard has been its co-production with NHS England and other charities including RNIB, Action on Hearing Loss and CHANGE and we have been delighted to be able to work together on this. It has been particularly fantastic to see NHS England meeting with deafblind people to hear their experiences directly and taking them into account in the final standard. One of the attendees at our consultation event said:
“I was at the last event and shared my thoughts, today we’ve seen the standard in its draft form and I can see that what I said has been included. I feel like my voice has been heard”
At this point in the oldblog, I’m going to hand over to Sarah Marsay from NHS England who has been leading on developing the Standard and working closely with Sense.
Sarah Marsay, Business Lead for The Accessible Information Standard, NHS England
Like Sarah White, I am delighted that the Accessible Information Standard has been approved. Although I’ve personally been working on the Standard since I joined NHS England a bit over two years ago, I know that many of the people I’ve spoken to as part of its development have been pushing for change for far longer. We really hope, and firmly believe, that this Standard will mark a real step-change in the ability of the NHS and adult social care system to meet the information and communication needs of people with a disability or sensory loss, including deafblind people.
The Standard provides clarity and direction, as well as introducing consistency to the whole process of how people’s information and communication needs are identified, recorded, flagged, shared and met. It will be clear to organisations exactly what they should, and must, do, which should have a significant impact on people’s experience of care, ability to access services independently, and to take control of their own health and wellbeing.
We have been committed to working with patients, service users, carers and parents to ensure that their experiences and expertise shape the final Standard. This has included engagement and consultation events co-hosted with Sense, and I hope that those who’ve been involved can see how their contribution has made a difference. For me, listening to people’s experiences, opinions, issues and suggestions has enabled me to better understand what the challenges really are, and hopefully our coproduction approach means that the Standard ‘delivers’ for service users and is ‘deliverable’ for NHS and adult social care providers. We know that things won’t change overnight – and organisations will have until 31st July 2016 to comply with the Standard – but, as the saying goes, ‘a journey of a thousand miles starts with a single step.’ We think this joint step forward is a pretty significant one.
**Name changed for confidentiality purposes