Response from Royal National Institute of Blind People (RNIB)
Liberating the NHS: An Information Revolution
A consultation on proposals
About us
As the largest organisation of blind and partially sighted people in the UK, RNIB is pleased to have the opportunity to respond to this consultation.
We are a membership organisation with over 10,000 members who are blind, partially sighted or the friends and family of people with sight loss. 80 per cent of our Trustees and Assembly Members are blind or partially sighted. We encourage members to be involved in our work and regularly consult with them on government policy and their ideas for change.
As a campaigning organisation of blind and partially sighted people, we fight for the rights of people with sight loss in each of the UK’s countries. Our priorities are to:
- Stop people losing their sight unnecessarily
- Support independent living for blind and partially sighted people
- Create a society that is inclusive of blind and partially sighted people's interests and needs.
We also provide expert knowledge to business and the public sector through consultancy on improving the accessibility of the built environment, technology, products and services.
Introduction
Please find below RNIB's response to the consultation.
We have considered each of the questions from two distinct perspectives.
One is in terms of format and is categorised as "accessible information provision", by which we mean the availability of information normally supplied in hardcopy print format, in large print, Braille, audio and electronic formats.
The other is in terms of content and is categorised as "information provided at time of sight loss", by which we mean information content relating to the care, management and treatment of a person with sight loss.
CHAPTER 1: An Information Revolution
1. What currently works well in terms of information for health and adult social care and what needs to change?
What is working well:
Some NHS services proactively communicate with their patients who cannot read ordinary print by providing personal and general health information in large print, braille and audio format to their blind and partially sighted patients. This enables patients to engage directly with the information given to them by clinicians, avoid missing appointments, take medication safely and preserve their right to confidentiality, choice and control.
Most NHS patients who cannot read ordinary print are still not given health information in a format they can read - 95% of patients with visual impairment said they were not asked about their information format needs by NHS professionals treating them
(Source Dr Foster report "Towards an inclusive health service: a report into the availability of health information for blind and partially sighted people" March 2009.)
Around two million people in the UK find it difficult or impossible to read ordinary print.
Dr Foster research found NHS professionals typically did not know what to do to address these needs.
What needs to change?
1. DH sets out a clear and simple policy, easily accessible to all NHS professionals and NHS organisations, so that blind and partially sighted patients have:
- the right to get their health information in a format they can personally read
- at the same time as they would normally get the information in ordinary print format
- without having to ask for this more than once
2. DH proactively tests, monitors and publishes data on the performance of the NHS in delivering this policy and can demonstrate, through the collection of performance data, that patients are having their information needs met.
3. DH to provide clear leadership in ensuring NHS computer systems, patient record systems and standards for NHS system interoperability, explicitly specify practical steps that will demonstrably facilitate the implementation of this policy, by:
- providing one-stop web pages guiding IT professionals on what exactly they are expected to do. DH must proactively move to
- check and monitor practical delivery e.g. that on-screen prompts are implemented in software systems to remind busy professionals to ask their patient if they have specific access requirements.
- provide the NHS professional with a box to type in what that patient's information format needs are
- check and monitor that NHS systems enable this information format needs data to be automatically transferred across to other NHS systems along the care pathway, so patients don't need to ask over and over again for their information to be given to them in a format they can personally read.
Example: GP refers patient to a hospital clinic, hospital clinic does not have to ask patient again what information format they need as the GP typed their patient's information format requirement into their system and this data was automatically transferred along with other data to the hospital clinic.
2. What do you think are the most important uses of information, and who are the most important users of it?
We welcome all the uses of information identified in section 1.8 of Liberating the NHS: an information revolution.
From our perspective the most important uses of information are:
- to enable patients to find and access NHS services effectively and to use prescribed medication safely.
- information defining an individual patient's communication needs is vital to flag up to health professionals. It is in the patient record that this data and an alert flag should be located.
- the sharing of information between health care providers and social care providers such as local authorities*.
*With a fifth of people saying that they don't recall receiving any visit from social services in the year after they were registered as blind, the need for health information to be used to inform the complete care package should be paramount to the information revolution.
3. Does the description of the information revolution capture all the important elements of the information system?
Not possible to answer this question due to inaccessible diagram.
* the diagram was completely inaccessible to blind people as no alternative way of presenting the information in text format was provided.
4. Given the current financial climate, how can the ambitions set out in this consultation - to make better use of information and technology to help drive better care and better outcomes - be delivered in the most effective and efficient way?
NHS professionals should be enabled to give health information to their blind and partially sighted patients in electronic formats, thus saving on the costs of special transcription and vastly reducing the time it takes for those patients to receive their information.
A major obstacle is the lack of clarity surrounding the giving of health information in electronic formats to blind and partially sighted people who say it is the only format they can access and read.
We have been told by NHS professionals and governance managers that "it is their policy not to give health information to patients in electronic formats" however in contrast other NHS professionals already supply their patients with emails and electronic documents.
We think DH has the opportunity now to move to clarify policy and practice in this area, providing professionals with clear guidance on how to advise patients on the security risks associated with email communication, enable the patient to make an informed choice and give their consent.
5. Where should the centre be focusing its limited financial resources and role to achieve the greatest positive effect?
No response.
CHAPTER 2: Information for patients, service users, carers and the public
6. As a patient or service user, would you be interested in having easy access to and control over your care records? What benefits do you think this would bring?
Yes, according to our members' feedback blind and partially sighted people want and need the same levels of access and control over their records as anyone else. Access brings many benefits including ability to better manage own treatment programme, understand own health condition and how to maximise positive outcomes, make private and confidential decisions about future care and treatment.
What does "easy" mean? It is vital that DH applies accessibility standards and thoroughly tests all access points to patient records to ensure that these are just as "easy" for assistive technology users (screen reader and magnification aids etc) to use as for people who do not rely on these reading aids.
What does "control" mean? Likewise the ability of a patient to "control" their records depends entirely on the design of the user interface. A poorly designed or implemented interface, in terms of web/software accessibility, would make it difficult or impossible for blind patients to achieve the sense of "control" that is being suggested here.
7. As a patient or service user, in what ways would it be useful for you to be able to communicate with your GP and other health and care professionals on-line, or would you prefer face-to-face contact?
Dr Foster report showed that in the 2008 survey of blind and partially sighted NHS users, that 15 per cent indicated email communication was their required medium. The survey revealed that almost a third of blind and partially sighted people went online to obtain health information.
These figures are very likely to have increased along with common trends in internet usage.
Network 1000 revealed computer usage amongst blind and partially sighted people of working age is higher than many people expected.
(Source: Network 1000, "Opinions and circumstances of visually impaired people in Great Britain: report based on over 1000 interviews", Birmingham University, August 2006.)
8. Please indicate any particular issues, including any risks and safeguards, which may need to be taken into account in sharing records in the ways identified in this consultation document.
Accessible information provision
It is essential that log in and security mechanisms, deployed on online access points, kiosks and all other access points to be made available to NHS patients, are fully tested and found to be effective and easy to use by all blind and partially sighted people.
RNIB is extremely concerned that the provisions made on HealthSpace for secure log in and security management may place blind and partially sighted people in a position where they cannot independently negotiate their way through log in.
Online banking has found solutions to accessible and secure log in and we are happy to link developers up with sources of information and expertise.
Information at time of sight loss
Paragraph 2.7 outlines examples of organisations expected to have patients' personal care records passed onto for further expertise in the management of health issues. We have a couple of concerns with this approach.
Further clarification is needed to address the issues of privacy and data protection when sharing the records.
The second point of concern is the increased emphasis being placed on the voluntary sector to provide accredited information and support to patients, without an indication of any further financial resource to cover the increased costs of this obligation. In the current financial climate it is unrealistic to expect the sector, of which RNIB is a part, to be able to provide the level of information and support previously supplied by the GP.
Paragraph 2.11 states "the importance to support service integration across health and social care must be recognised". This can not be stated strongly enough in our opinion. The transition between the health and social care spheres affects so many, and is of particular worry for blind and partially sighted people.
Paragraph 2.14 gives us further concern. The premise of the argument relies on "the market" developing new "products to bring together the information [patients] need in a form they expect." This reliance on market forces to drive the information revolution is concerning. Market force places the emphasis for product development on payment and the profit margin of service providers. Despite there being almost two million people in the UK living with sight loss, the needs of blind and partially sighted people are highly unlikely to be catered for in a competitive marketplace environment. This is why the equality act and the equality duty were introduced to protect minority groups. We believe that standards with equality at their heart need to be set to ensure that the direction of market development is influenced by the Department of Health to reflect the needs of all users not just the majority.
We would also like clarification on who will provide the auditing service referred to in paragraph 2.17. Will this become the duty of the Care Quality Commission?
9. What kinds of information and help would ensure that patients and service users are adequately supported when stressed and anxious?
Accessible information provision
Sarah's story (below) clearly illustrates the importance of NHS professionals and services being capable and competent in delivering patient information without delay in accessible formats:
Sarah is 25 and is registered blind. She said that following a cervical smear test at her GP surgery, a nurse offered to send her results in braille:
"Three weeks later I was told a standard print letter would be posted which I could ask someone else to read to me.
"A month after the test, and after several hours of frustrating phone calls, she finally received her results by email. "A sighted patient would have received the results within a fortnight.
"Chasing my results was extremely stressful and time-consuming. I was becoming angrier by the minute at the lack of accessibility to visually impaired patients.
"I received congratulations cards in braille from friends when I got married in 2008, why can't I get information from health services?"
Information at time of sight loss
In 2001 a study by RNIB showed that 70 per cent of blind and partially sighted people said they wanted someone to talk with about their fears and concerns on losing their sight. With only 19 per cent of people being offered this, there is an endemic problem with people not being supported with the information and emotional support they need during sight loss.
Whilst considering the information revolution therefore it's important to make sure that patient choice should not come at the expense of strong joined up support services at the point of diagnosis. Eye clinic liaison officers (ECLO) can offer a face to face point of contact when the service user is at their most stressed and anxious. Signposting to emotional support services and accredited support organisations external to the NHS should reduce anxiety and the risk of depression.
10. As a patient or service user, what types of information do you consider important to help you make informed choices? Is it easy to find? Where do you look?
Accessible information provision
Blind and partially sighted people consider the provision of information in large print, Braille, audio and electronic formats (those compatible with computer reading aids) not only important but vital for making informed and confidential choices about their healthcare and treatment.
Dr Foster research showed that in their 2008 survey 15 per cent of blind and partially sighted people wanted email communication and that almost a third looked to the internet to obtain health information.
NHS Choices is, according to feedback we have received over the last 18 months, an information source that blind and partially sighted people are increasingly using to get high quality and readable health information.
It is vital that the accessibility of NHS Choices is continually monitored and developed to ensure this section of the public can continue to rely on it. For many it is the ONLY source of NHS information in an accessible and readable format of its kind.
Information at time of sight loss
Without direction from a care professional to access information, it is unrealistic to expect a service user to seek out the relevant information to make informed choices about their future care needs either. Indeed, when looking back at the point of diagnosis, it is not uncommon for blind and partially sighted people to express frustration at being expected to seek out information:
"You don't really know what there is and what you need to know - it's things you find out later that makes you wonder why you weren't told things" (Douglas, Pavey and Cocoran, Network 1000, Access to information, services and support for people with visual impairment, October 2008)
Therefore there is a vital need for timely, high quality support to enable people to make the informed choices the Information Revolution is looking for. Not only is it reliant on an Eye Clinic Liaison Officer being in post to signpost patients to the sources of information, it is also once again reliant on the information being distributed being in accessible formats in line with the Equality act 2010.
11. What additional information would be helpful for specific groups?
eg
- users of maternity and childrens health services;
- disabled people;