At the end of July, the National Health Service (NHS) Accessible Information Standard was implemented throughout England. This means that any organisation providing NHS care or adult social care is now legally obliged to provide information in accessible formats, so that people with a disability or impairment (those who may not be able to access or read text and information in the traditional form) have the same access to health information as any other NHS user.
This includes an obligation for organisations to provide alternative information formats to meet individuals’ requirements, including Braille, electronic and audio formats.
The specification of the Accessible Information Standard highlights the Equality Act 2010 as a legal basis for implementation (alongside a ‘compelling moral and ethical imperative’), and also notes that the Standard is “unashamedly ambitious” in its overall aim of providing “clear direction for a dramatic improvement in the ability of the NHS and adult social care system to meet the information and communication support needs of disabled people.”
It also notes that applicable organisations have a legal obligation to follow the standard.
This is clearly a much-needed and positive step forwards in terms of accessible information, and many people with an impairment have been waiting years for such a move.
However, e-Access Bulletin has received correspondence from some readers who have had continued problems and difficulties in obtaining alternative format information, despite the Standard being in place. Their suggestion was that the Standard has not been properly or effectively implemented in all organisations.
In the interest of balance, it is worth noting that implementing such a Standard is clearly a huge undertaking. Some have argued that teething troubles are to be expected, while others say that things are simply not working as they should be. The important thing now, it seems, is for the Standard to be understood and implemented as widely and effectively as possible, so that people who need accessible information can receive it as quickly and smoothly as possible.
To give an overall picture of the current situation, e-Access Bulletin has collected comments from four different sources: two Bulletin readers who have encountered difficulties in obtaining accessible information; the Patient Information Forum (an independent, membership organisation for people working in healthcare information and support), and NHS England. These comments, published below, aim to explain the Standard and provide a view of how well it is currently working, but also – crucially – to explore what can be done to improve implementation.
– Penny Melville-Brown OBE, Director of Disability Dynamics and e-Access Bulletin reader:
“Like other organisations providing services to the public, the NHS knows that some disabled people have extra needs when it comes to communications and information. The NHS Accessible Information Standard requires accessible and alternate formats.
“More disabled people should get the healthcare we need – people with visual or hearing impairments have a higher risk of other long-term conditions, including dementia. People with alternative information or communication needs should take the following steps:
“Tell their GP practice manager; ask them to share those needs across the NHS; make sure their reasonable needs are met – not just what someone thinks will work; make sure the Standard is applied to all information; keep on asking – people are still learning; encourage others to ask too.
“Personal struggles with a leading eye hospital and GP practice show that some organisations need help to understand and change their systems. To get standard letters, appointment confirmations, surgery consent forms, routine leaflets, after-care instructions, etc, sent by email without hopelessly complicated security, I had to escalate requests to chief executive-level.
“One response included asking a blind person to read the bold wording – showing what still needs to be learned.”
More information on accessible communications can be found and downloaded at the Disability Dynamics blog:
eab.li/42 .
– Brian Gaff, of Kingston upon Thames Talking Newspaper (run by the Kingston upon Thames Association for the Blind), and e-Access Bulletin reader:
“One of the most frustrating things we hear about – and encounter – at the newspaper is lack of knowledge of healthcare and other government departments, about how it is possible to make their information accessible.“Many people have asked for things like appointment letters in either plain text emails or audio. Surely, with access to the raw text that most government sources must have, this should be a no-brainer.
“Now that the Accessible Information Standard has come into force, we are meant to be able to tell our GP our information choices, which feeds through to every part of the NHS and social care that we access – except it is not working, since everyone thinks it is somebody else’s job, not theirs.
“Seeing as this is not just an access issue but an independent living one as well, it seems to me that the Standard has been rolled out with little or no training to people in the areas who are going to implement it. There is web training and tests, but a busy department head is unlikely to have seen any of this.
“So, as far as getting government departments to get on the accessibility train with the commercial sector, somebody in government is going to have to bite the bullet and spend some money to train people, or else no matter how many times the law is broken, nothing will happen.
“I will say, however, that my local GP Practice Manager has tried long and hard to make this work, but outside of their practice it seems that the doors are closed right now.
“In terms of solutions, I would say: get a standard of good practice and get everyone using the same resources. This would hopefully save money and hopefully get communication about patients’ health working.”
– From NHS England, with a contribution from Dr Clare Mander, Clinical Lead for Accessible Information at Solent NHS Trust:
“The Standard sets out, for the first time, how all providers of NHS or adult social care must identify, record, flag, share and meet the information and communication support needs of people with a disability, impairment or sensory loss.
“Co-produced with a range of voluntary organisations, and with disabled people themselves, the Standard has been called a ‘step change’ in disabled people’s access to healthcare.
“As with any new, national initiative, the speed and effectiveness of implementation will vary. We are aware of fantastic work going on (for example, East Lancashire Hospitals NHS Trust has made significant progress in implementing the Standard) and have seen an increase in requests for large-print formats and audio, as well as via email, text and British Sign Language interpreter.
“As Dr Clare Mander, Clinical Lead for Accessible Information at Solent NHS Trust, explains: ‘We welcomed the opportunity to contribute to the development and implementation of the national standard. The legal requirements have galvanised a decade of local developments, which include qualitative research, service evaluations and innovation projects. Implementation of the standard across a Community and Mental Health Trust, with over 100 clinical sites, is no easy task.
‘In 2015, we began a project to develop a tiered model of accessible information training that was co-produced with patients living with communication and information needs. Our awareness DVD has now been rolled out across the Trust, an interactive accessible information learning platform is in development, and a programme of specialist training has been piloted with ten services.
‘Through this specialist training, champions were identified and formed a new accessible information network that will link with our patient leads. The network aims to facilitate collective intelligence and social learning to improve accessible information practice across the Trust. We still have a long way to go, but together we have the opportunities to make a real difference.’
“We advise anyone experiencing difficulties with receiving accessible information and/or communication support to follow the relevant complaints process. The NHS complaints process is explained on the NHS Choices website, at the following link:
eab.li/40 .
“Resources to support implementation are available on the NHS England website, at the following link:
eab.li/41 .
“During January-March 2017, there will be a review of the Standard to look at the impact it has had and to ensure that it is ‘fit for purpose’. Anyone wanting to get involved should join the distribution list, by emailing the following address: england.nhs.participation@nhs.net .
“Patients can also contact the Customer Contact Centre on the following phone UK number: 0300 311 22 33.”
– From The Patient Information Forum (PIF), with a contribution from Claire Murray, Joint Head of Operations:
“To support organisations to implement the Accessible Information Standard, PIF has launched a free-to-join online discussion group, where members can ask questions and share their experiences.
“Nearly 500 people have joined the group so far, and discussions have covered topics such as patient records, service user surveys in alternative communication formats, consent and ‘flagging’ communication needs.
“The group brings together people from across the NHS and local authorities, including people with specialist experience in developing accessible information from voluntary, statutory and commercial organisations. Through these interactions, the group has also shared useful resources on developing information in accessible formats, locally developed policies, and debunking some myths about the Standard.
“Claire Murray, Joint Head of Operations at PIF, says: ‘It’s been great to be part of bringing together such a diverse group of people around this important new Standard, to help increase understanding and expertise in developing truly accessible information.
‘Good information is vital to support people to understand and engage with their health and health services, and we know people with communication needs still face significant barriers in accessing this.
‘It’s not just the format of an information resource that affects its accessibility, and the ultimate judge of the usefulness of any piece of health information is the patient or service user engaging with it.
‘At PIF we believe that involving users in developing or adapting accessible information resources is a crucial step to delivering genuinely accessible information.
‘Implementing the Accessible Information Standard is not just a box-ticking exercise, it’s a fantastic opportunity for organisations to learn what really makes health information understandable for their users, and how best this can be delivered.’”
Join PIF’s ‘Accessible Information Group’ at the following link:
eab.li/43 .
Read more about the Accessible Information Standard – including the specification in Word document format and PDF – at the NHS England website:
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