Accessible Information Standard review
NHS England
March 2017
1.About Us
2.Introduction
3.Background
4.Support for the Accessible Information Standard
5.Impact of the Accessible Information Standard
6.Appendix – Action on Hearing Loss services
7.References
1.About Us
Action on Hearing Loss, formerly RNID, is the UK’s largest charity working for people with deafness, hearing loss and tinnitus. Our vision is of a world where deafness, hearing loss and tinnitus do not limit or label people and where people value and look after their hearing. We help people confronting deafness, tinnitus and hearing loss to live the life they choose, enabling them to take control of their lives and removing the barriers in their way. We give people support and care; develop technology and treatments and campaign for equality.
Throughout this response we use the term 'people with hearing loss' to refer to people with all levels of hearing loss, including people who are profoundly deaf. We are happy for the details of this response to be made public.
2.Introduction
Action on Hearing Loss welcomes the opportunity to submit evidence to NHS England’s post-implementation review of the Accessible Information Standard. People with hearing loss may find it difficult to communicate with other people and have an increased risk of social isolation, anxiety, depression and dementia. There is strong evidence that hearing aids improve quality of life and reduce other health risks, but many people are waiting too long to get their hearing tested. People with hearing loss may find it difficult to access health and social care services when they need to due to poor deaf awareness or the lack of communication support.
The Accessible Information Standard sets out a consistent approach to meeting the communication and information needs of people with disabilities and sensory loss, including people with hearing loss, The Standard has the potential to reduce barriers to communication stopping people with hearing loss from accessing and benefiting from health and social care. However, to be effective, it’s vital that the Standard is properly implemented and enforced. We are calling on all health and social care services to implement the standard in full. Health and social care services are making good progress in terms of implementing the Standard, but more work is urgently needed to make sure the benefits of accessible information and communication are fully realised for people with hearing loss.
This submission focuses on the key issues affecting people with hearing loss when accessing health and social care. Section 2 presents the background evidence on prevalence and impact of hearing loss and the common barriers to communication people with hearing loss face when they visit their GP, go into hospital or receive adult social care. Section 4 sets out the activities Action on Hearing Loss have carried out in support of the Standard. Finally, Section 5 presents the key themes from the feedback we have received from the people with hearing loss, our staff, volunteers and NHS Clinical Commissioning Groups (CCGs) on the accessibility of health and social care service and also makes recommendations for areas of future work.
3.Background
3.1.Prevalence and impact of hearing loss
There are 11 million people with hearing loss across the UK, about one in six of the population [1]. Hearing loss can be caused by regular and prolonged exposure to loud sounds, ototoxic drugs, genetic predisposition or complications from injuries or other conditions.
Age related damage to the cochlear is the single biggest cause of hearing loss. Over 70% of people over 70 [2] years old have hearing loss due to their age. The number of people with hearing loss is set to grow in the years to come, as the population ages By 2035, we estimate there will be approximately 15.6 million people with hearing loss [1]. Around 40% of people with learning disabilities have hearing loss and evidence suggests that people with learning disabilities are more likely to develop hearing loss earlier, compared to the general population [3].
There are also an estimated 900,000 people in the UK with severe or profound hearing loss[1]. Some people with severe or profound hearing loss use British Sign Language (BSL) as their main language and may consider themselves part of the Deaf Community, with a shared history, language and culture. Based on the 2011 census, we estimate that there are at least 24,000 people across the UK who use BSL as their main language – although this is likely to be an underestimate [1].
A significant body of evidence shows that hearing loss is a serious health condition that can have an adverse impact on a person’s health and quality of life [4].Studies have found that hearing loss is independently associated with increased use of health services, an increased burden of disease amongst adults and an increased risk of mortality [5]. Hearing loss has also been associated with more frequent falls [6], diabetes [7], stroke [8] and sight loss [9]. There is strong evidence of a link between hearing loss and dementia [10]. Evidence suggests that people with learning disabilities are at greater risk of poor health due to their hearing loss [11].
Given that most hearing loss is age related, many older people with hearing loss will also have other conditions such as physical disabilities, sight loss, dementia or cancer and this can cause complications. For example, hearing loss can be misdiagnosed as dementia or make the symptoms of dementia appear worse [12]. Diagnosing and managing hearing loss and taking hearing loss into account when diagnosing and managing other conditions is vital for good communication and care [13].
Unaddressed hearing loss can lead to loneliness, emotional distress, withdrawal from social situations and mental health problems [14]. Additional research shows that hearing loss increases the risk of loneliness, but only for those who don’t wear hearing aids [15].People with hearing loss are more likely to develop paranoia [16], anxiety and other mental health issues – for example, evidence shows that hearing loss doubles the risk of developing depression [17].
Hearing aids are shown to improve quality of life [18] and help people communicate, stay socially active and reduce the risk of loneliness and depression [19]. New evidence suggests they may reduce the risk of dementia [20]. However, many people are waiting too long to get their hearing tested. Research shows that people wait on average ten years before seeking help for their hearing loss and the average age for referral is in the mid-70s [21]. Delays in treatment mean people with hearing loss are less likely to benefit from hearing aids [21].
People who use BSL who need to access social care and support for other conditions may be at risk of loneliness and loss of cultural identity if they are unable to communicate in a meaningful way with care staff or other people in care homes. Evidence suggests that poor communication or ignorance of Deaf culture could lead to ineffective care and deterioration in health and wellbeing [22].Evidence suggests that people who use BSL may be reluctant to visit their GP due to communication barriers [23] and when they do, poor deaf awareness may lead to misdiagnosis or under-diagnosis of mental health problems [24].
3.2.Barriers to communication when accessing health and social care
People with hearing loss may need support to contact health and social care services, communicate well during appointments or when receiving care, and to understand information. However, research shows that this support is often not provided.
People with hearing loss may find it difficult or impossible to use the telephone to book appointments, order repeat prescriptions, receive test results or contact emergency or out of hours services. People with hearing loss may benefit from other contact options such as email, SMS Text, online booking and Text Relay. Our Access All Areas [25] report shows that many people with hearing loss are forced to struggle with the phone, or go in person, to book an appointment, due to the lack of accessible contact methods:
- A majority of respondents to our survey (72%) contacted their GP by phone, yet just under half (44%) of survey respondents said this is their preferred method of communication.
- Just under half (46%) visit their GP in person to book an appointment, but less than one in 10 (9%) preferred to book an appointment in this way.
- A third (31%) would prefer to book appointments by email, but less than one in 10 (9%) are able to do so –suggesting a high level of unmet need.
When visiting health services, people with hearing loss may need support to communicate well with care staff and know when it’s their turn to be seen. Alarmingly, our Access All Areas [25] report shows that one in seven (14%) respondents to our survey said they had missed an appointment because they didn’t hear their name being called in the waiting area. People with hearing loss may also benefit from visual display screens that clearly display when it’s their turn to see the doctor. But less than half (44%) of survey respondents reported that their GP surgery uses visual display screens to call patients in to appointments.
Research also shows that people with hearing loss may also struggle to understand what is being said during consultations or when receiving care due to poor deaf awareness or the lack of communication support.
Our Access All Areas[25] report shows that, after attending an appointment with their GP, more than a quarter of survey respondents (28%) had been unclear about their diagnosis and approximately a fifth (19%) had been unclear about their medication. When asked why they felt unclear after their appointment, more than half (64%) said the GP did not face them and more than half (57%) said the GP did not always speak clearly – suggesting that, if GPs followed simple communication tips, this could improve understanding and make treatment safer and more effective. People with hearing aids can benefit from hearing loop systems, yet over a third (35%) said these weren’t available.
Our A World of Silence[26] report also shows that staff in care homes are often unaware of the technology that could help people with hearing loss communicate, such as hearing loops, amplified telephones and personal listeners.
Despite the high prevalence of hearing loss in people with learning disabilities, evidence suggests that people with learning disabilities may find it difficult to access NHS audiology services when they need to. Research shows that 70% of people with learning disabilities have been seen by an audiologist at some point in their lifetime, but only 24% get regular adjustments or support – suggesting problems with communication and access [27].
Some people with hearing loss may need support from a qualified communication professional to communicate well during appointments and when receiving care. However our Access All Areas [25] report shows more than two-thirds (68%) of survey respondents who asked for a BSL interpreter for their GP appointment didn’t get one; and more than two-fifths (41%) felt unclear about their diagnosis because they couldn’t understand the BSL interpreter.
Without properly qualified communications professionals, people who use BSL in particular may be at risk of worse and poor health compared to the rest of the population. SignHealth’sSick of It report [28] shows that over a third (34%) of people who use BSL were unaware they had high or very high blood pressure and more than half (55%) of those who said they had cardiovascular disease were not receiving appropriate treatment. This suggests that people who use BSL may not be getting the treatment and care they need due to problems with communication and understanding.Additional research suggests that people who use BSL may be unable to access public health services and are at greater risk of cardiovascular disease due to the lack of information available in sign language [29].
4.Support for the Accessible Information Standard
Action on Hearing Loss supports the aims of the Accessible Information Standard. We havebeen heavily involved in the development and on-going maintenance and review of the Standard as a member of NHS England’s Accessible Information Advisory Group. We provide expertise and advice to make sure the Standard’s specification and guidance documents take account of the communication and information needs of people with hearing loss. In 2014, we co-hosted an event with NHS England to enable people with hearing loss to share their views and contribute to the Standard’s development.
We regularly offer information and advice to members of the public and health and social care professionals on meeting the communication and information needs of people with hearing loss. Aside from promoting the Standard through our website, social media channels, magazine and newsletter, we have produced guidance for GPs and care homes on improving the accessibility of their services for people with hearing loss. This guidance includes specific references to the Standard and practical examples of good quality care for people with hearing loss. We are also developing guidance for hospitals which is due to launch in spring 2017.
We regularly cite the Standard in our responses to National Institute of Health and Care Excellence (NICE) guideline and quality standard consultations, and when submitting evidence to local authorities developing Joint Strategic Needs Assessments (JSNAs). Our local services have also met with health and social care services to discuss the Standard and we have representatives on local Accessible Information Standard steering groups.
As part of local authority grant funded projects in Wandsworth and Barnet, we produced leaflets for people with hearing loss and health professionals which provide information on the Standard and different forms of support people with hearing loss may need. We also developed a communication book to help people with hearing loss andadditional needs, such as physical or learning disabilities, autism or acquired brain injuries, to know their rights in relation to the Standard and communicate well in hospital.
In July 2016, we launched our On the Record campaign to encourage people to contact their GP and let them know what support they need to communicate well. Weproduced a guide to explain people’s rights in relation to the Accessible Information Standard. A template letter for people to send to their GP practice manager and a communication card for people to give the GP receptionist in person are also available for download on the “On the Record”section of our website. People can use one of these two resources to explain to their GP what support they need. The rights guide, communication card and template letter are also available in British Sign Language (BSL). To find out more, please visit the “On the Record”section of our website
We have also produced an Accessible Communications policy which set out meet the requirements of the Standard across our own services and we are continually working to improve the way we communicate with people with disabilities and sensory loss. To find out more, please see section 6.
Over the past year, we have gathered feedback from the people we support and health and social care services to gain better understanding of the impact of the Standard and the progress health and social care services have made towards implementing its requirements.
As part of the “On the Record” campaign, we encouraged people with hearing loss to share their experiences of accessing health and social care services by email and on social media. We also attended meetings and other events to hear people’s views and gather evidence on the impact of the Standard. In February 2017, we co-hosted a workshop with NHS England to give people with hearing loss the opportunity to provide feedback on the accessibility of health and social care services and share their views on the Standard itself. The key themes from the feedback and workshop are summarised in section 5.1.
In May 2016, we wrote to all Clinical Commissioning Groups (CCGs) in England along with CHANGE, RNIB and Sense to highlight the benefits of the Accessible Information Standard for the people we support and to ask for their assessment of how prepared NHS providers in their area were to meet the Standard’s requirements. In September 2016, we also sent a follow up letter to CCGs requesting further information on what steps CCGs were taking to ensure the Standard is properly implemented and enforced. At the time of writing, 90CCGs have responded to one or both of our letters. The key findings from this letter are summarised in section 5.2.
5.Impact of the Accessible Information Standard
In this section, we present our first assessment of whetherthe Accessible Information Standard has resulted in improvements in quality of care for people with hearing loss. We set out the key findings from the feedback we received as part of the “On the Record” campaign, our joint workshop with NHS England and our correspondence with Clinical Commissioning Groups (CCGs). We also set outthe implications of our findings for people with hearing loss and our recommendations for future work.