ACTION NEEDED ON HEARING LOSS

Government solutions for a growing problem

Government solutions for a growing problem Hearing loss is a major public health issue affecting 10 million people – one in six of the UK population. It is also a growing problem, with the number of people affected expected to grow to 14.5 million by 2031. The scale of the challenge that society faces is equal to the challenge people with hearing loss face every day. There is compelling proof that they experience reduced access to our health system, the employment market, transport network, amenities, education, leisure and entertainment. Political leadership can play a pivotal role in transforming society for people with hearing loss. This document breaks this challenge down into specific policy solutions. As well as transforming the lives of people with hearing loss, these policies will deliver financial savings for the government and reduce the strain on public services. For example, we know that unaddressed hearing loss increases people’s chances of developing other long-term conditions, such as dementia. It also affects their ability to interact with health and social care services and manage their health effectively. This, in turn, leads to an ever-greater burden on our health and care system. But we can alleviate the impact of hearing loss through early diagnosis and improved accessibility. While we focus on changing society now for people with hearing loss, we must never lose sight of the need for a cure. Historically, medical research on hearing loss has suffered from underfunding, inevitably delaying the day we can announce that cure. We call on the next government to seize the potential of medical research and drive forward progress to deliver a cure within a generation. We hope that MPs and candidates from all political parties will engage with the ideas outlined in this document – and recognise hearing loss as a major public health issue over the course of the next Parliament. If they do, then we can work together to bring about real change in how our society diagnoses, treats and adapts to hearing loss.

Paul Breckell Chief Executive 2

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Action on hearing loss that the next government must take The next government should ensure that, by 2020, the 10 million people in the UK who are deaf or have a hearing loss have full and equal access to public services, employment and other aspects of everyday life; that communication is not a barrier in any area of their lives; that the health and social care system provides the support they need; and that significant investment and breakthroughs in medical research on hearing loss lead to the development of new treatments and cures. For this to happen, we need action to achieve each of the following:

Promote inclusion and participation • No one is excluded from the workplace because they are deaf or have hearing loss. •T  he Access to Work scheme meets the needs of people who are deaf or have hearing loss, and provides the right support at work.

• Services for other long-term conditions – in particular, those with a link to hearing loss, such as dementia – automatically consider the needs of people with hearing loss. • Adult social care services have appropriate eligibility criteria and funding, so that people with hearing loss can get the care and support they need.

Transform hearing services, care and support • We have a national hearing screening programme for everyone aged 65. •G  P services, pharmacies and healthcare professionals raise awareness of hearing loss as a matter of course – and offer routine hearing checks and make referrals to hearing services. •A  ccess to free hearing aids through the NHS continues for people who could benefit from them. •P  atients referred to an audiologist are seen within 18 weeks and receive high-quality care during assessment, follow-up and aftercare, and are signposted to further support services, such as hearing therapy. • Everyone diagnosed with hearing loss is offered lipreading support.

•A  ll TV programmes and films have high-quality subtitles as standard – regardless of the service or platform.

• Public health campaigns challenge the stigma still attached to hearing loss.

•P  ublic transport is fully accessible to people with hearing loss. In practice, this means information and announcements in accessible formats, and companies making full use of the latest communication technology.

Create new treatments for hearing loss

•T  he Equality Act is strictly enforced, so that organisations and services make the reasonable adjustments needed by people who are deaf or hard of hearing.

Improve health and social care •H  ealth and social care services are fully accessible to hearing aid wearers, and fully qualified British Sign Language (BSL) interpreters are available for every health appointment, where needed.

•T  he UK invests appropriate levels of funding in research into new treatments for hearing loss and tinnitus. •B  usiness investment is encouraged in emerging areas of medical research that will address significant, unmet medical needs, such as hearing loss. •T  he UK is promoted as a world leader in hearing research so that we attract, develop and retain the best and brightest talent.

•H  ealth and social care services are fully integrated and person-centred. This means that everyone with hearing loss gets the information, support, referrals, devices and equipment they need. 4 Action on hearing loss that the next government must take

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Hearing loss – a snapshoti

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million people with hearing loss

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2014 • There are more than 10 million people in the UK with some form of hearing loss – that’s one in six of the population. • 3.7 million of those people are of working age (16–64), and 6.3 million of retirement age (65+). • Nearly 42% of people over 50 have some kind of hearing loss.

million people with hearing loss

2031

•B  y 2031, it is estimated that there will be 14.5 million people with hearing loss in the UK.

• More than 70% of people over 70 have some form of hearing loss.

• At least 4 million people who don’t have hearing aids would benefit from using them.

•M  ore than 800,000 people in the UK are severely or profoundly deaf.

• There are approximately 356,000 people with combined visual and hearing impairment in the UK.

• On average, it takes 10 years for people to address their hearing loss.

•T  here are more than 45,000 deaf children in the UK, plus many more who experience temporary hearing loss.

• About 2 million people in the UK have hearing aids, but only 1.4 million use them regularly.

• About one in 10 adults in the UK have mild tinnitus, and up to 1% have tinnitus that affects their quality of life.

Action on Hearing Loss, The Facts: Facts and figures on hearing loss and tinnitus, July 2011.

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Inclusion and participation in society There are key areas of modern life, such as employment, being able to access television programmes and using public transport, where people with hearing loss face unnecessary barriers. Action by the next government in these areas will make a substantial difference to the lives of people who are deaf or hard of hearing. The next government must ensure that: • No one is excluded from the workplace due to deafness or hearing loss. • The Access to Work scheme meets the needs of people with hearing loss and provides the support they need in the workplace. • All TV programmes and films have high-quality subtitles as standard – regardless of the service or platform. • Public transport is fully accessible to people with hearing loss. In practice, this means information and announcements in accessible formats, and companies making full use of the latest communication technology. • The Equality Act is strictly enforced, so that organisations and services make the reasonable adjustments that people who are deaf or hard of hearing need.

employment Government has an important role to play in expanding employment opportunities for people with hearing loss. The next government, therefore, must ensure that nobody is barred from the workplace because of hearing loss. It must also challenge employers’ attitudes and reform the Access to Work scheme – to make sure that people with hearing loss get the help and support they need to fulfil their employment potential. For people with hearing loss, the job market can be a challenging place. Far too many have negative experiences in the workplace or find they are simply barred from employment. This happens despite the fact that, with the right help and support, anybody who is deaf or hard of hearing can enter and remain in the workforce.

The Access to Work scheme, if tailored correctly, can provide the necessary financial support to make adjustments that allow people with hearing loss to enter and remain in the workforce. These adjustments can include British Sign Language (BSL) interpretation and assistive telecommunications equipment. The next government must ensure that the Access to Work scheme meets the needs of people with hearing loss, by addressing the current problems of arbitrary limits on the level of support available and unsuitable needs assessments. It must also provide political leadership to change the attitude of employers and transform the standing of people with hearing loss in the workplace.

THE EvIDENCE • The employment rate for people who identify ‘difficulty in hearing’ as their main health issue is 64%. This compares with an employment rate of 77% for people with no long-term health issue or disability1. • A recent Action on Hearing Loss survey of people with hearing loss found that 41% of respondents who had retired early said they did so because of hearing loss difficulties, such as problems using the phone or communication challenges with colleagues2. • Approximately three-quarters of respondents (74%) felt their employment opportunities were more limited because of their hearing loss3. • Only 54% of respondents in work said they were aware of the Access to Work scheme4. • Nearly eight in 10 (79%) identified employers’ attitudes as the main barrier to employment5.

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What the next government must do • Monitor the success of initiatives such as the ‘Disability Confident’ campaign in encouraging employers to recruit people with a wide range of disabilities, including hearing loss. • Make sure that employers are aware of their legal responsibilities under the Equality Act 2010 – and that the Act is properly enforced (see page 18). • Work with hearing loss organisations to identify and make the necessary reforms to the Access to Work scheme to make sure it fully supports people with hearing loss. • Actively promote the Access to Work scheme so that employers and employees are better informed about the assistance and support available. • Direct other relevant bodies to promote the Access to Work scheme, for example, audiology departments and other healthcare professionals.

The ImPACT

“I retired to remove the stress from my life. It was difficult to maintain good communications with my hearing peers in the workplace and I often felt undervalued and underappreciated.” 6

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THE EvIDENCE

Access to television Of all the issues raised with Action on Hearing Loss, the most prominent is access to broadcasting. Subtitles are an essential access service, and action is urgently needed, particularly around the quantity of subtitles on video on demand (VOD) services and the quality of live subtitles. In recent decades there have been vast improvements in access to television for people with hearing loss. The 1990 and 1996 Broadcasting Acts led to huge increases in subtitling on analogue and digital terrestrial television. The 2003 Communications Act further improved matters by setting a legal requirement for broadcasters, including cable and satellite channels, to provide access services, including subtitles. However, since these Acts were passed, the way we watch film and television has changed drastically. Programmes that were subtitled when initially broadcast on conventional channels may not be subtitled on catch-up or video-ondemand services, or on live-streaming broadcasts. The next government must show leadership and ensure that people with hearing loss have equal access to television and films – regardless of the service or platform. The Audiovisual Media Services Regulations 2009 introduced regulations for video on demand services for the first time. They direct the Authority for Television On Demand (ATVOD), to encourage providers of on-demand programme services to make content progressively more accessible to people

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with hearing loss. While action is being taken, progress remains slow because there is no legal requirement to provide subtitling or signing. As a result, many service providers still do not provide these access services. In July 2013, the Department for Culture, Media and Sport published ‘Connectivity, Content and Consumers’, which states: …we will work with the Authority for Television on Demand (ATVOD)…to increase the levels of subtitles and audio-description for on-demand content and we will monitor progress through its annual survey. If it is clear that progress isn’t being made in three years’ time – a reasonable timeframe in our view – we will consider legislation7.

• TV is the most important medium for the public to hear political parties’ ideas and arguments in the run-up to the general election and decide how to vote8. Yet, in our 2012 survey on the quality of subtitles, the greatest number of complaints was about news programmes, with nearly half of respondents experiencing a problem (46%)9. • Subtitle accuracy rates often drop well below the recommended minimum of 98%, particularly for chat shows10. • At 5.6 seconds, the average delay between speech and subtitles appearing is well over the recommended three seconds, with spikes of up to 24 seconds11. • In 2013, subtitles were not available for 18.1% of hours of programming broadcast on standard television12.

We believe that legislation should be brought in as soon as possible to give people with hearing loss equal access to video on demand. Given that legislation has proved so effective in the past, and the lack of clarity around what constitutes sufficient progress, it simply isn’t enough to rely heavily on the current voluntary approach.

What the next government must do • Extend legislation to require access services on all television programmes, regardless of service or platform. • Ensure the continued monitoring of live subtitles by the regulator, Ofcom.

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Access to transport Being able to access transport is a key aspect of social inclusion, one that opens up employment, health services, education, social events and leisure pursuits. Every stage of a public transport journey should be accessible to people with hearing loss through information and announcements in accessible formats, and technology such as induction loops at ticket windows. However, the reality is that passengers with hearing loss face many challenges when travelling, which causes unnecessary stress and anxiety. Public information is often relayed by audible means only, depriving passengers with hearing loss of relevant updates about their journey. Communication with staff is often difficult due to a lack of deaf awareness, with training requirements in this area varying across different transport systems. Real-time, visualinformation displays (on trains, buses and throughout stations) are invaluable for people with hearing loss, but how these systems are used varies widely across the transport network. There are also significant safety concerns due to a lack of visual alarms and real-time visual emergency announcements.

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The evidence We regularly survey our members on their experience of using public transport. The evidence to emerge includes: •O  nly 11% of respondents said that bus drivers, conductors and ticket inspectors are deaf aware13. •4  8% of people with hearing loss feel there is not enough information available on buses14. •N  early nine in 10 people with hearing loss cannot hear announcements when travelling on the train, with more than a quarter of train users with hearing loss missing their station because they couldn’t hear announcements15. •O  nly one in 10 people with hearing loss said that visual information screens give enough real-time information about unexpected events; for example, a delay, station closure or route change16.

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What the next government must do • Put in place the necessary regulatory framework to remove the barriers currently faced by people with hearing loss when travelling on all forms of public transport; and ensure that operators across the transport network apply the practical steps needed to give people with hearing loss equal access. • Ensure that current regulations are extended to provide audiovisual information for passengers across the transport network. • Implement European regulations requiring all frontline bus staff to undertake disability training which will help them to communicate with people with hearing loss.

The ImPACT

“I panic when I have to use public transport. I can never hear the tannoy; people just stare at you as if you are weird when you ask for help to hear.” 17 “There was one time when I was on a train journey where the train stopped at a station and did not move again. I found out that the train split and the front half continued on its journey to my destination and the back half was terminated and was being primed ready for its journey elsewhere.” 18 16 Inclusion and participation in society

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The importance of the equality Act The Equality Act is a key piece of legislation that contains measures to improve quality of life across many areas for disabled people in the UK – including the 10 million people with hearing loss. However, too many people are being let down because the Act is not adequately enforced. Under the Act, service providers and employers have a duty to make reasonable adjustments to make sure people who are disabled are not at a significant disadvantage, compared to people who are not disabled. For people with hearing loss, an example of a reasonable adjustment could be the provision of a working induction loop.

THE EvIDENCE • Too often, the reasonable adjustments that would help people with hearing loss are not made. When communicating with their bank, 32% of people with hearing loss have difficulties specifically related to their hearing loss or deafness, with 17% having to rely on a relative, friend or carer to phone the bank on their behalf19. • 30% of people with hearing loss have had difficulties related to their hearing loss or deafness when communicating with a utility provider20.

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What the next government must do • Take a more systematic approach to the enforcement of the Equality Act, empowering disabled people and ensuring that service providers and employers make the reasonable adjustments that deaf and hard of hearing people need.

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Accessing health and social care The NHS allows us to access health services, treatments, advice and information. As we get older, it is likely that we will contact health and social care services more frequently. We are also more likely to have a hearing loss. For people who are deaf or who have hearing loss, accessing health and social care services can be a real challenge. There are key actions that the next government must take to ensure that: • Health and social care services are fully accessible to hearing aid wearers, and fully qualified British Sign Language (BSL) interpreters are available for every health appointment, where needed. • Health and social care services are fully integrated and person-centred. This means that everyone with hearing loss gets the information, support, referrals, devices and equipment they need. • Services for other long-term conditions – in particular, those with a link to hearing loss, such as dementia – automatically consider the needs of people with hearing loss. • Adult social care services have appropriate eligibility criteria and funding, so that people with hearing loss can get the care and support they need.

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Accessible, integrated and personcentred care Accessing health services can be a challenge to people with all levels of hearing loss. Hearing aid users may struggle to navigate a GP telephone appointment system. Profoundly deaf BSL users will not be able to discuss their condition with a healthcare professional without a properly qualified interpreter present. The inability of patients to communicate effectively with healthcare professionals affects their ability to manage their health – with negative consequences for the individual and the health and social care system. Through the Equality Act and the Human Rights Act, there is currently a clear legal foundation for providing equal access to health services for people with hearing loss. However, health services too often fail to make the reasonable adjustments necessary to accommodate hearing loss. In many cases, healthcare professionals are not aware of, or overlook, their responsibility to provide communication support to patients with hearing loss, and fail to provide interpreters for BSL users. This leaves patients confused about other health conditions and the steps they should be taking to manage them. When people with hearing loss do successfully access health and social care services, it is essential that they are fully integrated and person-centred, so that every person with hearing loss receives the information, support, referrals, devices and equipment they need to manage their hearing loss and other health conditions effectively, to enjoy independence and live

well. This includes referring for hearing assessment someone thought to have an unaddressed hearing loss who is accessing health or social care services for nonhearing loss reasons. NHS Accessible Information Standard The forthcoming NHS Accessible Information Standard, which Action on Hearing Loss has worked with NHS England to prepare, has the potential to help. The Standard will provide guidelines that tell organisations how to make sure patients, service users and carers understand the information they are given. The guidelines will also tell organisations how to make sure people get whatever communication support they need, for example a BSL interpreter or an advocate. Hearing loss and dementia With some conditions, the impact of, or link with, hearing loss is particularly acute, and integration would bring particular benefit to individuals and the health and social care system. In particular, there is a strong link between hearing loss and dementia: people with mild hearing loss are twice as likely to develop dementia as people without any hearing loss; and the risk increases to three times as likely for those with moderate hearing loss21. Dementia and hearing loss or deafness can make communication more difficult, but the diagnosis and management of both conditions rely on effective communication. In particular, it can be more difficult to diagnose either hearing loss or dementia where the other condition is present. Ineffective management of hearing loss can make symptoms of dementia worse or appear worse.

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THE EvIDENCE • One in seven people with hearing loss (14%) have missed an appointment because they didn’t hear their name called in the waiting room22. • Due to poor communication, 28% of patients with hearing loss were unclear about their diagnosis following a GP appointment23.

What the next government must do

• 70% of BSL users admitted to A&E units were not provided with a BSL interpreter24.

• Ensure that the forthcoming NHS Accessible Information Standard is effective and that its guidance is followed once it is published.

• Hearing loss has a negative overall impact on self-management of longterm conditions: higher levels of hearing loss are linked to lower levels of patient activation – a measure of patients’ knowledge, skills and confidence to selfmanage their condition25.

• Ensure that everybody who requires a BSL interpreter at a healthcare appointment is provided with one who is appropriately qualified, as is their right under the Equality Act.

• Of the 85,000 people with dementia who enter care homes in England every year, at least 37,400 have a hearing loss. If relevant services were responsive to the needs of people with hearing loss, it would result in savings of at least £28 million per year in residential care26. • Four out of five people fitted with a hearing aid receive no information about other services or equipment for managing their hearing loss and maximising independence and wellbeing, for example local authority support27.

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• Provide national leadership to deliver improved detection of hearing loss in all health and care settings, for example through the incorporation of hearing checks or hearing screening into general health or wellbeing checks. • Ensure that information and health promotion campaigns are accessible to people with hearing loss and deaf people who use BSL. • Fund research to develop better diagnostic tools, specialist services and guidance to support people with hearing loss and deaf people who also have other long-term conditions; and make sure these are used. • Ensure that resources are allocated in a cost-effective way by properly managing hearing loss in people with other longterm conditions. For example, review the lack of resources allocated to hearing loss within the National Dementia Strategy for England.

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The impact

“Staff are embarrassed they cannot communicate, and are on the defensive. That defence means they may shout at you, or sit you down and say ‘stay there’. It is almost as if you are stigmatised. It is only a small amount of training, I am not asking for anything extra. I am concerned about the staff – they have not got the training they need to support you.” 28

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Social care eligibility Effective management of hearing loss has been shown to improve an individual’s communication ability, employment prospects, relationships, self-confidence, social participation and overall health, and reduce the risk of depression and anxiety. Ensuring that people have access to the social care they need to manage their hearing loss effectively reduces the likelihood that they will go on to develop more acute needs, which would require more costly intensive care at a later stage. Under the current system, local authorities provide a number of free services to support people with hearing loss to manage their condition effectively. These services include information and assessment, and equipment such as flashing smoke alarms for adapting people’s homes to their condition.

THE EvIDENCE • According to research conducted by the London School of Economics, setting the national eligibility threshold at the proposed level means approximately 362,000 older and disabled people will be denied the support they need to undertake personal care, work, education or training29. • To keep pace with demographic changes, government spending on social care should have risen by £1.6 billion in the eight years up to 2013. In practice, the reverse has occurred – for example, the latest survey from the Association of Directors of Adult Social Services (ADASS) shows that adult social care budgets have actually been cut by £3.5 billion over the last four years30.

Until recently, there has been a postcode lottery when it comes to eligibility for social care services, with some areas setting the local eligibility threshold at ‘substantial needs’, and others at ‘moderate needs’. This leaves some people with hearing loss stranded without support. The new Care Act will set a nationwide eligibility threshold, a step towards modernising adult social care and ending regional variation. But without sufficient extra funding to put the Act into effect, the reforms will be undermined because the draft eligibility regulations suggest the threshold will be set at the equivalent of the higher ‘substantial’ level. As a result, many people with hearing loss will be denied access to the support and assistive equipment that could have a hugely positive impact on their wellbeing, safety and independence.

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What the next government must do • Appropriate eligibility criteria and funding must be set for adult social care, and sufficient funding invested in the system so that people with hearing loss have access to social care and support.

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Transforming hearing services, care and support With one in six people in the UK having some form of hearing loss, and the number of people with hearing loss set to rise to 14.5 million by 2031, it is essential that people who are deaf or hard of hearing are able to access world class hearing services and get the diagnosis, treatment support and aftercare that they need. The next government must ensure that: • A national hearing screening programme is introduced for everyone aged 65 • GP services, pharmacies and other health professionals raise awareness of hearing loss as a matter of course – and offer routine hearing checks and make referrals to hearing services • Access to free hearing aids through the NHS continues for people who could benefit from their use • Patients referred to an audiologist are seen within 18 weeks and receive highquality care during assessment, followup, and aftercare, and are signposted to further support services, such as hearing therapy • Lipreading support is offered to everyone diagnosed with hearing loss • Public health campaigns challenge the stigma still associated with hearing loss.

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National adult hearing screening Hearing Loss goes unaddressed for too long in far too many people. Yet we know that early diagnosis and treatment produce the most effective outcomes for the individual and is cost-effective for society. A hearing screening programme for everyone at the age of 65 has the potential to drastically reduce the impact and cost of unaddressed hearing loss. Many with unaddressed hearing loss try to carry on as normal to the detriment of their health and quality of life, and at the cost of millions of pounds to the public purse. By the time many people seek treatment, their ability to adapt to and benefit from hearing aids is often greatly reduced. The number of older people in our society is growing, and the issue of unaddressed hearing loss will become increasingly prevalent unless action is taken. On average, people referred for hearing assessment are in their mid-70s and have had a hearing problem for 10 years or more. We know that unaddressed hearing loss is a big factor in depression, isolation and dementia. A national hearing screening programme for people aged 65 should be introduced and GP services, pharmacies and other health professionals should raise awareness of hearing loss and offer routine hearing checks and referrals to hearing services. The programme would involve a questionnaire and a simple hearing check to identify people who should receive a more-thorough assessment.

THE EvIDENCE • There are four million people in the UK living with an unaddressed hearing loss31. • Hearing loss is especially prevalent among older people, with an estimated 62% of those aged 65 and over having some form of hearing loss32. • A hearing screening programme for people aged 65 would cost £255 million over 10 years, but the benefits across this period would amount to over £2 billion, including avoided personal, employment, social and healthcare costs33. • A hearing screening programme for people aged 65 would provide a 10-year benefit to cost ratio of 8:134.

The ImPACT

“I didn’t realise how much I was missing until I had my hearing aids. And I never realised the impact on my general health and wellbeing.” 35 “I would be lost without my hearing aids. Before I had them I was becoming very withdrawn and was really struggling at work. I couldn’t believe the difference as soon as I had them fitted. I could hear the birds singing!” 36

What the next government must do • Introduce a national hearing screening programme for people aged 65.

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Availability and standards of audiology services There is clear and comprehensive evidence of the clinical benefits of providing hearing aids for people with mild to moderate hearing loss. Studies have shown that hearing aids improve communication, relationships, self-confidence, social participation and overall health, and that they reduce depression and anxiety37.

It is essential, too, that as well as being seen promptly following a referral to an audiologist, people with hearing loss who go on to receive hearing aids receive a high standard of care across assessment, follow-up, aftercare and signposting to further support services for hearing loss, such as hearing therapy.

Since 1948, people with hearing loss who could benefit from hearing aids have received them without charge through the NHS. We are concerned that local Clinical Commissioning Groups (CCGs) could decide to end or restrict availability to NHS patients. One CCG has already proposed this, even though it poses a substantial threat to patients’ quality of life.

Other aftercare support should include:

The NHS in England is currently performing well against its targets for patient referral times for audiology services. Given the importance of early diagnosis and timely intervention for people with hearing loss, it is important to maintain these high standards. Additionally, however, the next government should prioritise improved outcomes and benefits for people with hearing loss. Under Any Qualified Provider (AQP), we want to see more accessible and integrated services closer to people’s homes, which improve levels of diagnosis and meet patients’ needs. Policymakers must achieve these outcomes through an appropriate evaluation framework.

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• f ollow-up appointments to check that hearing aids are working properly and to make any technical adjustments •a  ccess to spare batteries, help with cleaning or changing the tubing of the hearing aid and identifying any serious issues • s upport such as assistive equipment from social services to help people adjust to how hearing loss can affect quality of life in so many areas.

THE Evidence • The World Health Organization predicts that, by 2030, adult onset hearing loss will be in the top 10 disease burdens in the UK38. •T  he total cost to the NHS of all of one person’s appointments, two hearing aids and repairs is just £398. This small cost per person enables the NHS to deliver huge benefits in terms of quality of life and reduces the need for more-costly interventions in the future. By contrast, it costs £3,000 on average to purchase a set of hearing aids privately39. • In May 2014, 98.4% of patients across England were seen within 18 weeks, with an average waiting time of less than five weeks40. •A  mong patients and GPs, there is low awareness of patient choice under the AQP system; regulations are not necessarily followed in all areas, and the quality and choice of AQP services is inconsistent41.

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The ImPACT

What the next government must do • Ensure that people with hearing loss who could benefit from hearing aids continue to receive them free of charge from the NHS. • Encourage the National Institute for Health and Care Excellence (NICE) to urgently bring forward development of the Clinical Guidance and Quality Standards that it has already scheduled to develop for adult onset hearing loss. • Continue the monitoring of audiology waiting times to ensure that patients referred to an audiologist are seen within the recommended 18 weeks. • Effectively monitor and evaluate the outcomes that AQP provision delivers for people with hearing loss.

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“The value of wearing hearing aids at an early stage of hearing loss is crucial to getting the full benefit from them as hearing deteriorates further. It is a struggle getting used to them at a later stage of hearing loss – and the aids are more likely to be left in a drawer than used. For this reason, not providing hearing aids at an early stage is a false economy.” 42 “I have moderate hearing loss and, without my NHS hearing aids, I would be unable to function! They enable me to work and, therefore, contribute to the education system in which I work. I’m also able to have a social life.” 43 www.actiononhearingloss.org.uk

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THE EvIDENCE

Lipreading Lipreading is the ability to recognise lip shapes and patterns, and use context to fill gaps in conversation, to maximise communication. For many people with hearing loss, lipreading is a vital communication skill. Most people learn to lipread by attending classes taught by a qualified lipreading teacher. Classes also include information about other ways people can manage their hearing loss and improve communication. These include knowing how to manage a communication environment, through strategies such as identifying the best place to sit in a group setting. Many classes also provide useful information about services and equipment, and are an important source of peer support, where people meet and share their experiences and coping strategies. However, not enough people are able to access this crucial resource. Lack of provision, pronounced regional variations, and a structural disconnect between lipreading and the health system, have erected barriers between people with hearing loss and lipreading support services.

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A mistaken perception In England, lipreading has traditionally been viewed as an adult skill and falls under the responsibility of the Department for Business, Innovation and Skills (BIS). Since 2005, lipreading classes have been funded through the Community Learning budget (previously Informal Adult and Community Learning), because lipreading cannot be linked to literacy or numeracy measures, with funding administered to providers by the Skills Funding Agency. This classification places lipreading alongside other Community Learning opportunities, some of which are typically leisure activities. This can lead to a perception that attending lipreading classes is a hobby – which is not the case. Also, signposting to lipreading classes by audiologists and GPs happens on an adhoc basis, and people may have to pay to attend.

• In 2010, there were approximately 450 lipreading classes in England and Wales, enough to support fewer than 5,000 people, despite there being more than 10 million people with hearing loss who could potentially benefit from such classes44. • People who have attended courses have identified the top benefits as: improving lipreading skills (84%); meeting other people who are dealing with hearing loss (75%); and finding out about equipment and adaptations that could help them (66%)45. • In a survey of Action on Hearing Loss members, three-quarters of respondents (78%) considered lipreading classes to be a part of rehabilitation following hearing loss46.

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The ImPACT

“I feel like I am incorporating lipreading in structured situations, [like] the weekly meeting at work. That has been the case for the last year. I am aware I am managing that much, much better. It tends to be the same people, so I have learned their lip shapes and things like that, which is good because that is the crucial meeting at work.” 47 “But the whole thing, I’ve got to say hand on heart, the whole thing has been a real life changer, but that particular lesson, something in me switched and I just thought, do you know what, I can do this, I can go to these restaurants, I can go to bars and cinemas...it’s really given me the confidence to say ‘Can you look at me. Can you face me?’” 48 “In terms of lipreading, it’s had its impact, I feel a bit more confident about the future.” 49 38 Transforming hearing services, care and support

What the next government must do • Invest in lipreading teacher-training opportunities to make sure appropriately qualified people are in place to deliver this support in the future. • Conduct a governmental cross-departmental review to identify ways of making sure people with hearing loss have adequate access to appropriate lipreading services and other support to manage their condition. This support should be integrated into the patient pathway and offered to everybody diagnosed with hearing loss.

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Challenge stigma The stigma attached to hearing loss is a major barrier that prevents people from taking the necessary steps to address their condition. People avoid acknowledging and addressing their hearing loss and delay using hearing aids. On average, people wait 10 years between noticing symptoms and seeking help, which reduces their ability to manage their hearing loss, affects their health adversely in other ways and represents a cost to the public purse. It is essential, therefore, that the next government shows the political leadership needed to challenge this stigma and uses public health campaigns to encourage people to address their hearing loss.

THE EvIDENCE • Nearly half of non-adopters of hearing aids (48%) cited stigma as a factor in their desire not to wear them52. • 28% of non-adopters are concerned that others would treat them differently if they knew about their hearing loss53. • Only one in three people who could benefit from hearing aids have accessed them54.

The ImPACT

“I am the oldest employee and do not want any further reason for my colleagues to make fun of me.” 50 “I don’t want to make it public knowledge, as I don’t want them to query whether I can do the job.” 51 40 Transforming hearing services, care and support

What the next government must do • Deliver a nationwide public health campaign to improve awareness of the impacts of hearing loss, targeting people at risk of hearing loss, their friends and family, and health and care professionals. • Normalise hearing aids by increasing awareness and uptake through a nationwide hearing screening programme for everyone aged 65. • Challenge employers and address the discrimination caused by the stigma of hearing loss in the workplace.

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Create new treatments for hearing loss Although important advances have been made, there are still no treatments to undo or halt the progression of hearing loss. Hearing loss research is currently underfunded, so we want to work with the government, industry and funding bodies to overturn this lack of investment and help establish the UK as a leading centre of hearing loss research. We believe that, with more investment and the necessary political leadership, we can develop cures for hearing loss and tinnitus. The next government must ensure that: • The UK invests appropriate funding in research into new treatments for hearing loss and tinnitus. • Business investment is encouraged in emerging areas of medical research that will address significant, unmet medical need, such as hearing loss. • The UK is promoted as a world leader in hearing loss research so that we attract, develop and retain the best and brightest talent.

We are making rapid progress towards understanding the causes of hearing loss and developing strategies to protect and restore hearing, and silence tinnitus. Scientists now need to show that their approach to curing or treating hearing loss and tinnitus is likely to be safe, effective and of real benefit. This type of research – to refine a promising new treatment to a point where it can be safely tested in patients – is called translational research. But there is a problem. Academics are not generally rewarded for this type of work, and public sector and charity funders tend to not support it, on the assumption that the commercial sector will develop any promising ideas into profitable treatments. The reality is, however, that the commercial sector prefers to fund research that is ready to enter clinical trials. This situation creates a funding gap that hinders the development of new treatments.

THE EvIDENCE • In 2010, the UK spent £1.34 on research into hearing loss for every person affected. This compares to £14.21 for sight loss, £21.31 for diabetes and £49.71 for cardiovascular research55. • At Action on Hearing Loss we have increased our annual funding for biomedical research in recent years, from £900,000 in 2010–11 to £1.6 million in 2013–14, enabling us to expand our work to increase research capacity, make scientific discoveries and support translational research. But we need government support to go further and deliver the financial and structural resources necessary to realise the potential of medical research into hearing loss. • If biomedical research into hearing loss is expanded, it’s possible that we could see cures for hearing loss within a generation.

What the next government must do • Invest in research into new treatments for hearing loss and tinnitus, bringing an end to the years of disproportionately low levels of funding for hearing research, relative to the scale of the issue. • Catalyse business investment in emerging areas of medical research that will address significant, unmet medical need, such as hearing loss. • Promote the UK as a world leader in hearing loss research to attract talent and inward investment.

42 Create new treatments for hearing loss

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Information on Action on Hearing Loss Action on Hearing Loss’s vision is a world where deafness, hearing loss and tinnitus do not limit or determine opportunity, and where people value their hearing. Our work, to achieve this vision, spread across the UK, has three distinct aims: • We support people with hearing loss by providing services and support. • We provide a national voice for hearing loss, using social research to put it on the national agenda. • We work to find cures, funding medical research to deliver a cure within a generation.

Supporting people We aim to support people with hearing loss locally and nationally through our charitable and commissioned offerings. We provide a number of community services for people with hearing loss. Our care and support service provides residential care, supported housing, community services and reablement services for people across the country. We personalise our care and support services for every individual, so that people who are deaf, deafblind or have a hearing loss and additional needs can live everyday life the way they want. We provide Hear to Help services across the country, which enable people to make the most of their hearing aids and manage their hearing loss effectively. Through a mix of community and homebased services, our staff and volunteers provide, free of charge, help with using and maintaining hearing aidS. Our Hear to Meet sessions are a befriending service that helps reduce the isolation that many people with hearing loss experience. Nationally, our website (www. actiononhearingloss.org.uk) and information line (Tel. 0808 808 0123, Textphone. 0808 8089000, SMS 0780 0000 360) provide free, confidential and impartial information to deaf and hard of hearing people, their families and friends, and healthcare professionals.

the private sector, to individuals with hearing loss and the wider public. Our ability to present the case for change on hearing loss is grounded in policy based on social research. Our research programme is focused on informing those key policy areas where we can have greatest impact. This allows us to engage with decision-makers and service commissioners to raise standards for people with hearing loss.

Finding cures We fund research discoveries around the world and break down barriers to translate these discoveries into viable treatments and medicines. We’re also increasing the number of researchers in the field through our well-established grants schemes, and providing important support for companies wanting to develop medicines and treatments. As an organisation, Action on Hearing Loss focuses on four key areas of medical research: • restoring hearing • preventing hearing loss • improving medical devices • silencing tinnitus.

National voice Action on Hearing Loss is working to put hearing loss on the national agenda. We aim to raise awareness of hearing loss amongst everyone, from government, through to public service providers and

44 Information on Action on Hearing Loss

We have increased our annual funding for biomedical research over recent years from £900,000 in 2010–11 to £1.6 million in 2013–14, enabling us to expand our work to increase research capacity, make scientific discoveries and support translational research.

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References 1. Labour Force Survey, Quarter 2, April – June 2013 (Unpublished Secondary Analysis by Action on Hearing Loss)

30. http://www.adass.org.uk/adass-budget-survey-2014/ ADASS Budget Survey 2014

2. Action on Hearing Loss, Unlimited Potential: A Research Report into Disadvantage in the Workplace, October 2011

31. Action on Hearing Loss, The Facts: Facts and figures on hearing loss and tinnitus, July 2011

3. Action on Hearing Loss, Hidden Disadvantage: Why people with hearing loss are still losing out at work, September 2014

32. The Hearing Screening for Life Campaign, Hearing Screening for Life, Full Report, 2013

4. Ibid

33. L  ondon Economics (Prepared for RNID), Cost benefit analysis of hearing screening for older people: Final Report, September 2010

5. Ibid 6. Ibid 7. Department for Culture, Media and Sport, Connectivity, Content and Consumers: Britain’s digital platform for growth, July 2013 8. H  ansard Society, Audit of Political Engagement 9: The 2012 Report: Part Two The media and politics, p.13, Figure. 2 – Demonstrates that 75% of people consider TV as one of their three main sources of political news and information. The second highest scoring medium, tabloid newspapers, only scored 27%. 9. Action on Hearing Loss, Access to TV and video on demand (VOD) for people with hearing loss: Policy Statement, June 2014 10. Ibid 11. Ibid 12. Ofcom, Television Access Services: Final Report on 2013, April 2014 13. Action on Hearing Loss, Policy Statement: Access to buses and coaches for people with hearing loss, June 2014 14. Ibid 15. A  ction on Hearing Loss, Policy Statement: Access to rail travel for people with hearing loss, January 2014

34. Ibid 35. Action on Hearing Loss, An appeal to North Staffordshire CCG from people with mild to moderate hearing loss, July 2014 36. Ibid 37. Action on Hearing Loss, Action on Hearing Loss response to North Staffordshire CCG’s proposals to stop providing hearing aids for people with mild to moderate age-related hearing loss, July 2014 38. Hearing Loss, The Facts: Facts and figures on hearing loss and tinnitus, July 2011 39. Which? website www.which.co.uk/home-and-garden/stayingindependent-at-home/guides/how-to-getthe-best-hearingaid/how-to-buy-your-hearing-aids/ (Accessed July 2014) and Monitor/NHS England (2013) National tariff information workbook 2014/15. 40. http://www.england.nhs.uk/statistics/2014/07/17/directaccess-audiology-waiting-times-may-2014/ 41. Action on Hearing Loss, Policy Statement: Extending patient choice to Any Qualified Provider (AQP), December 2013

16. Ibid

42. Action on Hearing Loss, An appeal to North Staffordshire CCG from people with mild to moderate hearing loss, August 2014

17. Action on Hearing Loss, Policy Statement: Access to public transport for people with hearing loss, January 2014

43. Ibid

18. Action on Hearing Loss, Policy Statement: Access to rail travel for people with hearing loss, January 2014 19. Action on Hearing Loss, Policy Statement: Access to Services for People with Hearing Loss, June 2012 20. Ibid 21. Action on Hearing Loss and Deafness Cognition and Language Research Centre, Joining Up: Why people with hearing loss or deafness would benefit from an integrated response to longterm conditions, 2013 22. Action on Hearing Loss, Access All Areas, A report into the experiences of people with hearing loss when accessing healthcare, 2013

44. Action on Hearing Loss, Policy Statement: Lipreading Support, February 2014 45. Ibid 46. Action on Hearing Loss (RNID), Read My Lips: the Case for Lipreading in Scotland, 2010 47. Action on Hearing Loss, Not Just Lip Service: Why it’s time to recognise the value of lipreading and managing hearing loss support, April 2013 48. Ibid 49. Ibid 50. Action on Hearing Loss, Unlimited Potential, A Research Report into Disadvantage in the Workplace, October 2011,

23. Ibid

51. Ibid

24. Action on Hearing Loss, Policy Statement: Access to health services for people with hearing loss, 2012

52. Kochkin, S (2007) ‘MarkeTrak VII: Obstacles to adult non-user adoption of hearing aids’ in Hearing Journal 60 (4) pp 24-51

25. Action on Hearing Loss and Deafness Cognition and Language Research Centre, Joining Up: Why people with hearing loss or deafness would benefit from an integrated response to long-term conditions, 2013

53. Ibid

26. Ibid

54. Action on Hearing Loss, The Facts: Facts and figures on hearing loss and tinnitus, July 2011 55. Action on Hearing Loss, Hearing Matters: Taking Action on Hearing Loss in the 21st Century, 2011

27. Action on Hearing Loss (RNID), Annual Survey report, 2008 28. Action on Hearing Loss, Access All Areas, A report into the experiences of people with hearing loss when accessing healthcare, 2013 29. Care and Support Alliance (of which Action on Hearing Loss is a member), Care Bill will change lives – but the Government must go further, October 2013

46 Information on Action on Hearing Loss

CREDIT ISTOCK PHOTOS: 2, 8, 10-11, 13, 14-15, 16-17, 20-21, 22-23, 29, 30-31, 34-35, 40-41 and 47

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We’re Action on Hearing Loss, the charity working for a world where hearing loss doesn’t limit or label people, where tinnitus is silenced – and where people value and look after their hearing. We can’t do this without your help. To find out more about what we do and how you can support us, go to www.actiononhearingloss.org.uk Action on Hearing Loss Information Line Telephone 0808 808 0123 Textphone 0808 808 9000 SMS 0780 000 0360 (standard text message rates apply) Email [email protected] To find out more on anything contained in this publication please contact the Action on Hearing Loss Public Affairs and Campaigns team on Telephone 020 7296 8012 Email [email protected]

Action on Hearing Loss is the trading name of The Royal National Institute for Deaf People. A registered charity in England and Wales (207720) and Scotland (SC038926) A0841/0914