All about. Hearing Loss. An Information, Support & Rehabilitation Resource. Produced by people with hearing loss, for people with hearing loss.

Transcription

1 All about Hearing Loss An Information, Support & Rehabilitation Resource Produced by people with hearing loss, for people with hearing loss nadp National Association of Deafened People Issue A, November 2013

2 The National Association for Deafened People (NADP) is a charity that supports and campaigns for people who have lost some or all of their hearing after learning and using the spoken language. The normal means of communication for these people is therefore speech, not sign language, but to adequately enable that, many will require some amount of communication support, particularly those with a more substantial hearing loss. That will generally start with assistive devices such as hearing aids and cochlear implants but for many people, such devices can have many limitations and will be inadequate in many situations. For more difficult situations, hearing loops, lipreading, speech to text translation or communication in writing may well become essential requirements if adequate communication and equality is to be achieved. NADP is governed and run entirely by volunteers, all of whom have a substantial hearing loss. If you find the work that it does, typically as shown in this publication, to be of value, we would appreciate your acknowledgement of that fact, by joining NADP as a free member to help strengthen the organisation and the work that it does. Better still, if you feel that you might like to help in any capacity, or even to make a donation, then we would be delighted to know. NADP Dalton House 60 Winsor Avenue London SW19 2RR Website: enquiries@nadp.org.uk Tel: SMS Fax: Charity Registration No:

3 Section 1 Guide to Contents (Issue A, November 2013) All About Hearing Loss is a resource produced for: All people who use speech to communicate but have lost some or all of their hearing. More particularly, it is for those with recent substantial hearing loss, to provide readily available help, support and information during their rehabilitation. Families and friends of people with hearing loss, to show ways in which they can provide valuable help, support and encouragement. All people wishing to gain a better awareness and understand the problems and needs arising from hearing loss. Issue Date 1. Guide to Contents Nov Speech and Sign Language, Why do we need both? Nov Overview Nov How Did It Happen Nov It's More than just Hearing Loss, Circumstances & Environment Nov It s More than just Hearing Loss, Tinnitus, Balance & more Nov Seeking Help Nov What to Expect from your Audiologist Nov Self-help and Personal Relationships Nov Learning to Adjust Nov How Will I Communicate Nov Communication Support Nov Communication Tips Nov Telephones Nov Mobile Phones Nov Hearing Loops Nov Employment Nov Access to Work Nov Education and Training Nov Benefits and Pensions Nov Your Legal Rights. Nov Shopping and Travelling Nov Leisure Nov Television Nov Personal Safety Nov Useful Books, Videos, Publications and Websites Nov Contacts Nov Note: The information in this booklet is given in good faith but NADP cannot accept responsibility for any loss, damage or injury resulting from its use. Page 1 of 1.

4 Section 2 Speech and Sign Language Why do we need both? Imagine a situation where a child is born deaf. Modern technology using implants can often now help to give that child sufficient hearing awareness to enable it to follow an auditory route through its education but where that is not possible, sign language may be the only option. Sign language is a complete form of communication and for two sign language users communicating together, being unable to hear does not cause any problems because they have no communication restrictions at all. Sign language therefore has its strengths and has been a lifesaver for its users, but we need to remember that with more than 99% of the population unable to use or understand sign language, its user community is very small indeed. Within their own society, sign language users can communicate easily and so have no general social problems. Without interpreter support to access the spoken language however, they find themselves excluded from the far bigger hearing, society. That will affect their ability to access education, employment, public services, written communications for which sign language has no equivalent and of course spoken communication, so it is a major problem. Now think of yourself now at some point in your adult life when you were building independence, a career and personal relationships, and imagine that your hearing starts to fail. You will remain the same person with all your skills and other abilities but your independence, career and personal relationships are all at risk of being substantially damaged or lost unless you can adequately understand what people using the spoken language are saying. You are still part of the hearing society using the spoken language and will have an absolute wish to remain so. You will have no problems at all with written communications but you will be finding all sorts of problems with spoken communication. Without communications support, there will be many occasions where you are being excluded from your own society. If you want to be able to fully use the skills and abilities that you have built up as a hearing person you will need to regain your communication ability. Sign language can help in some circumstances but with such a small number of users sign language is not the answer. The only real option you have is to find ways to overcome the barriers of spoken communication. Some of that you can do yourself but in many circumstances you will need communication support (see Sections 11 and 12). These are the typical characteristics of all disabilities. Given the right support to counter your disability, you can continue to use your skills and other abilities like anyone else (as admirably demonstrated by the 2012 Paralympics). Progress continues to be made in proving the support needed by people with hearing loss but we are still a long way short of what is needed. Page 1 of 2.

5 Speech and Sign Language, Section 2 All people with hearing loss have the common problem of communication and their problems are broadly as shown below. With assistive technology and acquired coping skills however, many people will, with time and practice, become more effective in their ability to communicate. In some cases people with substantial hearing loss may be able to communicate as well as those who are hard of hearing and some who used sign language during their early years can become very capable in using the English language. Equally, some who are hard of hearing, may struggle with both assistive technology and coping skills and find communication an increasing problem, so the groups below have no clear boundaries and will include a good extent of overlap. Hard of Hearing People who use the spoken language but have a mild to moderate hearing loss, causing words or parts of conversations to be missed. It is estimated that around 1in 6 (10 million) people in the UK are hard of hearing. That very high number of people with relatively mild problems may shape public perceptions of hearing loss but for the following smaller groups, hearing loss can create far bigger problems that are part of every spoken communication. Deafened People with more substantial hearing loss which can be a very distressing experience and very difficult to deal with, particularly where employment, partners and young children are involved. It is estimated that in the UK there may be over 120,000 deafened people aged 16 to 60 and possibly around 560,000 aged over 60 who have more gradually reached the same condition as they have got older. See also Action on Hearing Loss statistics: Deaf (with a capital D ) People who were ether born substantially deaf or lost their hearing at a very early age and throughout their education and formative years have used British Sign Language (BSL) as their normal first language. The term Culturally Deaf is also used to describe people who are part of the Deaf community. It is estimated that there are up to about 60,000 people in the UK who use BSL as their main language. Page 2 of 2.

6 Section 3 Overview All personal loss results in a fairly common set of reactions. Typically, you will move through a sequence of denial, anger and depression before finally coming to terms with the loss and finding your level of acceptance, as you appreciate that you are otherwise still sufficiently fit and able to fulfil many of the things you want in life. For hearing loss, how long you stay in each stage of that sequence will vary according to how much your hearing has changed and whether and it has happened suddenly or over a longer period of time. It will also depend on how your close family, friends and colleagues deal with the deafness. If your hearing loss is comparatively mild, you may be finding some difficulty in following a conversation or joining in. You may still be able to use a phone and hear the TV but you will be missing words and asking for repetitions. That may not seem too bad in itself and at first you may try to ignore it, with the result that your partner, family and others need perhaps to repeat conversations, help with telephone calls and social situations, or have louder sound on the television. In a situation like that you will be spending a long time in denial, which after a while may become an increasingly unwelcome, perhaps irritating, intrusion. Other people may perhaps see it as being awkward or not trying when hearing is made difficult by the environment or background noise. Misunderstandings may arise. Remarks such as, "He/she understands when he/she wants to" may be made and then regretted and even worse, tempers may erupt. With your spoken communication problems being present all day long, you will find so many things that have become more difficult. Denying personal loss is a normal first reaction. You may need help from family and friends to move on and accept your hearing loss, so please seek their help because as with many things in life, discussion and understanding prevents difficulties becoming bigger problems. If your hearing loss is more substantial but has occurred gradually you will have had time to seek help, obtain assistive equipment such as hearing aids or a cochlear implant as applicable and pick up personal skills and strategies as described in the following sections of this resource. Nothing will get your hearing back to what it was though and even in one-toone situations you may still find it very difficult to work out what other people are saying. In many situations outside one-to-one conversation you will in all probability not be able to work out what other people are saying so please try to learn about and use all the support you can, as detailed in the subsequent Sections of this resource. If your hearing loss happens suddenly, the above problems will be well outside anything that you have experienced before and you will be totally unprepared. Initially you may feel a terrible sense of loss as though you are bereaved. You may experience a great assortment of emotional responses: shock, disbelief, fear, anger, resentment, anxiety, guilt, depression, frustration and hopelessness. People who have experienced substantial hearing loss, need to be able to talk about their feelings before working through them and given the right kind of help Page 1 of 3.

7 Overview, Section 3 and encouragement they can do that. Hearing loss is somewhat unique however in that even giving help and encouragement is hampered by communication difficulties, leaving people with substantial hearing loss struggling to even discuss what has happened, or to seek the comfort of talking to others. People with substantial hearing loss find ways to adjust and cope in time, particularly with help from, cochlear implants, hearing aids and lipreading but the problems and challenges for each individual can differ considerably. Those differences are covered in Sections 5 and 6 but the remainder of this section looks at the common problem that is probably at the top of the list for all people with hearing loss. Communication Hearing loss is treated primarily as a medical problem but its impact as a social problem is equally important. It can take away your ability to hear music and all the environmental sounds but most of all it will affect your communication. In a world where speech, hearing and language is such an integral part of nearly everything that we do, spoken conversation is simply taken for granted with everyone expected to conform and respond in the same way. Anyone unable to do that can soon feel uncomfortable and people with hearing loss can very easily develop a stigma, not wanting to let others know their difficulties but not able to cope without letting them know. Most people with substantial hearing loss find that the attitudes and reactions of others to their difficulties with communication is more of a problem than the hearing loss itself and would probably say that the three most important problems on their list are communication, communication and communication, as detailed below: Personal Spoken Communication With family and friends, the basic approach of listening and replying is very often intentionally broken in many ways by, for example, spontaneous interruptions of just a few words to add a new idea or a bit of humour, sometimes just thinking aloud, or delivering short comments quite rapidly to add to their effect. With anything more than mild hearing loss, communicating in that way is not really possible any more and has to be largely one-to-one, in a good environment and delivered in a more structured way (see Section 13). The communication difficulties of hearing loss can take away a lot of the dimensions and qualities of good personal spoken communication, making relationships more difficult and adding stress on both sides of the communication. Electronic Communication The sound from TV, radio, voice telephone or video content on the internet is another area where many people with hearing loss can no longer make out what is being said. Subtitles help enormously and are available on all the main TV channels. They are also available on some DVDs. Page 2 of 3.

8 Overview, Section 3 Hearing loops can also help some people in some situations but a large part of electronic communication content available to the public still remains inaccessible for many people with hearing loss. Improvements continue to be made and there is hope of much improved text relay services for voice telephone being announced in the spring of 2014 but generally, a substantial amount more still needs doing to improve accessibility in this area. Group Communication. In public meetings, group discussions or question and answer sessions, where none of the contents has been prepared in advance, everyone in the audience will often be at some distance from the speaker(s) so most people in the audience will need help and microphones may be in use to relay what is said. If simple audio provision of that kind is no use to people with hearing loss, and it often is not, they will be unable to hear or pick up much of what is said and effectively are being excluded from such meetings. There are a number of options that can be used to include people with hearing loss and the introduction of the Public Sector Equality Duty is now helping to do that. A great many meetings of this type are not covered by the Public Sector Equality Duty however so this is another case where a substantial amount more still needs doing to improve accessibility for people with hearing loss. nadp.org.uk Page 3 of 3.

9 Section 4 How Did It Happen What people perceive as sound and speech does not exist as such in the natural world where it is simply airborne vibration. Those airborne vibrations pass along the ear canal and as they reach the eardrum they create physical vibrations which pass on through the three small bones of the middle ear (the hammer, anvil and stirrup) to the inner ear, or cochlea. The cochlea is a small complex organ of spiral chambers and hair cells which turn the physical vibrations into electrical impulses which then pass along the auditory nerve to the brain, where they are perceived as the everyday sounds that we understand. Problems in any of the above parts of the ear can cause hearing loss. Hearing loss caused by wax or other blockage outside the eardrum, physical damage to the eardrum itself, or problems in the middle ear are termed conductive hearing loss. The most common middle ear problem is the build-up of fluid or pus behind the ear drum due to infection. In most cases, conductive hearing loss can be cured but in some cases it can take quite a while to regain normal hearing again. Problems occurring in the inner ear or on auditory nerve are identified as sensorineural hearing loss, which can be due to many causes, some of which are shown below and in most cases cannot yet be cured. Loss occurring quickly Head injury The side effects of antibiotics such as aminoglycosides & some chemotherapy. Viral infections of the auditory nerve, such as mumps or rubella. Infections and illnesses caught by mothers during pregnancy. Meningitis (infection of the membranes surrounding the brain and spinal cord). Consequential damage from other conditions such as encephalitis (swelling of the brain), multiple sclerosis and strokes Loss occurring more slowly Age-related hearing loss (presbycusis) Prolonged or repeated exposure to loud noises (acoustic trauma) Acoustic neuroma (a benign growth on or near the auditory nerve) Genetic disorder, such as NF2 (but not always through family history) Induced Loss For older people, loud noises from industrial machinery and gunshot have been common causes but preventative equipment now make both of those causes far less common. Younger people are also constantly being reminded that the same risk arises when listening to music at excessively loud levels and this is becoming an increasingly common cause of hearing loss. Page 1 of 2.

10 How Did It Happen, Section 4 Family and friends may like to visit the Better Hearing Institute Hearing Loss Simulator: which gives a fascinating experience of hearing loss. The simulator allows you to play different sound examples and compare them for normal hearing, mild hearing loss and moderate hearing loss. Page 2 of 2.

11 Section 5 It s More Than Just the Hearing Loss Your Circumstances, Environment and Character Matter Too Hearing loss brings many practical communication problems that are common to all people with hearing loss (see Section 3) but of course there are many other aspects of communications. The extent and importance of the communication in your employment and relationships will matter very much and will depend on your personal circumstances, environment and character. Those factors will differ for everyone, perhaps quite considerably, so even if two people have exactly the same hearing loss, as measured by a hearing test, their relationships, circumstances, environment and character can produce a totally different outcome of their problems and experiences. Your Personal Circumstances If your hearing loss has occurred gradually, your communication problems at the onset, although unwelcome, are likely to have been fairly mild. With time to acquire new skills and tactics as your hearing has deteriorated, the changes may have remained reasonably manageable. If your hearing loss has occurred more rapidly, or even suddenly, many big changes to your life will have happened all together and very quickly which is a far bigger problem and at the time can feel totally unmanageable. Your role at home, particularly if you have young children to care for, will almost certainly be of concern because you are responsible for their safety and welfare. At the onset of substantial hearing loss, husbands, wives, partners, family and friends will all be affected by the social effects of not being able to communicate and relate to you as they did before when trying to engage in trivial conversation, share casual jokes or exchange intimacies. As you learn new communication skills that will reduce a little but you will be well aware that all the other people close to you in life are having problems as well as yourself. That can easily turn into situations where you begin to feel inadequate, or that you are causing problems for other people. If you have a young family to care for, your time and energy may be stretched already and any significant changes forced on you due to hearing loss can considerably increase the pressures of providing for them, as well as communicating with them, producing another situation that is again hard to deal with. If your children are grown up and independent, the demands on your available time and energy have probably reduced so, as above, although changes due to hearing loss are unwelcome, you may at least be better able to deal with them. Many people also live close to their financial means so looking after your existing employment or finding new employment when necessary is an important commitment for all people. If, perhaps quite rapidly you find yourself unable to use voice telephone reliably, if at all, and unable to hear what is being said in meetings bigger than two or three you will be very worried, knowing that your capabilities have reduced and that your employment is very much at risk. Page 1 of 3.

12 Circumstances, Environment and Character, Section 5 In the early stages after hearing loss, with so much seeming to be near impossible you will no doubt find it difficult to believe but many people with significant hearing loss have shown that with the right support, they can remain capable and effective in their employment, even at senior levels With so many challenges though, many people can easily feel all alone in the world but you are not. Many others have faced the same challenges and had much the same thoughts The Environment Affecting Your Communication Some environments are far better than others for hearing speech or sounds and, particularly if you are still relying on residual hearing to some extent, you may find that the change from good environment to poor environment results directly in a change from successful communication to poor, or often, no communication at all. Environmental factors that can affect your ability to communicate are given in Section 13 but for example include things such as poor acoustics, background noise, fading light, or the person talking to you moving around or looking away. A good example is someone with substantial hearing loss in conversation while walking along a busy street. You need to keep looking at the person's face a good part of the time and you need to watch out for other pedestrians and street furniture. You cannot do both, so may do neither very successfully. You may then find places where there is a lot of background noise or poor acoustics, or perhaps it may get quite dark as you pass under a bridge. You will not easily see those changes coming and the person that you are talking to will quite probably not see them at all. As a result you may seem to others to be communicating quite well but at the same time you may be missing big chunks of the conversation as the conditions change. What does the person with hearing loss do in those circumstances? Do you keep stopping the conversation and re-winding to the point where it faded out, making it difficult for the speaker. Or do you let it carry on and see if a bit of intuition or intelligent guessing can be used to fill in the gaps, making it difficult for yourself. Everybody with hearing loss will have a different answer to that situation and it is of course all about finding the right balance between stopping or carrying on. Time and practise can help a lot in learning the skills to deal with those environmental changes but it is likely that even well skilled people with hearing loss miss rather more than they imagine. The Environment Affecting Your Safety and Wellbeing Substantial hearing loss is nearly always a permanent change. Its impact on natural environmental sounds along with manufactured sounds such as music and audible alarms will be a constant loss. Page 2 of 3.

13 Circumstances, Environment and Character, Section 5 Environmental sounds that can affect your wellbeing include for examples reduced or no ability to hear music or radio, the noises of wildlife, moving water or the wind and rain as it swirls around. Environmental sounds that can affect your safety are shown in Section 25 and include for example reduced or no ability to hear alarms, to hear the noise of moving vehicles / machinery, or to contact others when alone in an accident or emergency. For many people facing a loss of any kind, music and the environmental sounds of nature can be a source of great comfort and relaxation to take their minds off the loss and so help their recovery. For people with hearing loss it is a very different situation with music and the environmental sounds of nature being part of the problem rather than part of the cure. Your Character / Personality When faced with challenges and problems, some people will naturally fight back whilst others may be left feeling inadequate, or even useless. We are all different and if two people have exactly the same hearing loss, as measured by a hearing test, some will see their situation as a pint half full, where they are still fit and able enough to do everything other than hear well, whilst others will see it as a pint half empty and not be able to see anything beyond the hearing loss itself. Dealing with it All Your hearing loss, as measured by hearing tests is just a very rough guide indeed. The many other factors related to personal circumstances, environment and character that make your own problems and experiences unique and with all those things seeming to add in as extras you may feel as though your own problems are somehow different and that you have so much more to cope with than many other people. Your problems may be different and unique but they are unlikely to be much worse just a different combination. Some people will make much ado of a relatively small hearing loss while some seem able to cope adequately with a far more substantial loss. Try to meet other people with similar hearing loss; try to make use of the information and advice contained in other sections of this resource and above all try to stay positive. You will then see that you are not alone and you are just as able to cope as anyone else. Page 3 of 3.

14 Section 6 It s More Than Just the Hearing Loss There s often Tinnitus, Balance & other problems as well Hearing loss can be a change from a world of sound to a world of silence and comparisons such as feeling like a goldfish in a glass bowl, with people and the world moving silently around" have been made but very frequently hearing loss does not occur alone. Related problems such as tinnitus, balance or various types of dizziness/vertigo can occur as well. Tinnitus Tinnitus is the perception of hearing noises that are totally unrelated to anything that may be occurring externally. Buzzing, whistling and hissing are the more common descriptions that most people with tinnitus will use when trying to describe what they are experiencing but some will use descriptions such as machinery or even a jet engine, so the perceived noises can cover a wide range of frequencies and intensity. For many people, their tinnitus is intermittent and not too loud, but for others, unfortunately it can be present every minute of every day and loud as well. Tinnitus can occur with or without hearing loss, at any age, sensed in one ear, both ears, or just generally in the head. Depending on the type and severity of the tinnitus, people may find difficulty in concentration or in getting to sleep and at times may understandably get rather irritable or tired of unwanted intrusive noises. That may be more so for people who are severely or profoundly deaf because there may be fewer other noises to hold their attention. Sometimes however, hearing loss can be more a loss of sound quality. With hearing aids or a cochlear implant to correct the sound level, the listener is left with a noisy and largely incomprehensible input. Bring that together with tinnitus which may be continuous and often loud and hearing loss can be very different indeed from the usual perception of a world of silence. For people affected in that way, it can be a very noisy world of unidentified sounds and often incomprehensible speech. There is no easy answer to tinnitus but you should discuss it with your doctor or audiologist if it is causing you problems. Cochlear implants do sometimes give relief to tinnitus sufferers and some people obtain benefit from tinnitus maskers but self-management techniques can bring most benefit. Self-management is a mental approach to help keep your attention away from the tinnitus and help you to stay more relaxed. If you have continuous tinnitus you may have noticed at times that when you have been concentrating very hard on an activity or are dealing with an emergency, your thoughts have totally focussed on what you are doing and the tinnitus, although it is still there has not actively registered its presence in your thoughts. At those times you are totally in control of your tinnitus so you have shown yourself that you most certainly can do it. Page 1 of 2.

15 Tinnitus, Balance and Other Problems, Section 6 Keeping up that level of mind control is for short periods of time only but practise will reward you and the time periods do get longer. You will obviously not keep significant tinnitus out of mind for very long but it is very much worth the effort of trying to keep your mind focused on something else. It most certainly can work to put your tinnitus out of mind for short periods of time and make it seem less important even when it won t go away. You will find the relief, along with knowing that you can exercise some control over your tinnitus, a very welcome and satisfying achievement indeed. Some NHS audiology departments run specialist tinnitus clinics and it may be worth asking for an appointment. Deafness Research UK and Action on Hearing Loss have information on tinnitus but you may find the British Tinnitus Association is your best starting point. See Section 27, part (a) for the contact details of all three organisations. Balance Since the body s balance and hearing organs are close together, problems in the inner ear can also cause balance problems. The extent can vary from simply feeling light headed through to a significant risk of falling. Medication may sometimes be needed and specialist physiotherapy exercises are often beneficial. Somewhat surprisingly, the exercises use the same type of body movements that cause the problem but they are used in a controlled way so that the brain gets used to the response and learns to correct it. Without specialist exercises, the brain will still experience the same movements and make corrections but it will usually take longer to get the same results. Over time however, balance will often become less of a problem as the brain naturally senses and adapts to compensate for the changed circumstances. Meniere s Disease Meniere's disease is a condition caused by an accumulation of fluid in the inner ear that can cause hearing loss, tinnitus and vertigo. It is a progressive problem and can develop in different ways with different people. Generally there will be attacks of rotational vertigo that can last anywhere from minutes to hours. Those attacks may be accompanied by a degree of hearing loss and tinnitus that will generally correct after each attack but small changes over time may result in a progressive deterioration. See Section 27, part (a) for contact details of the Meniere s Society, the British Tinnitus Association and Action on Hearing Loss. There are useful books listed in Section 26. Page 2 of 2.

16 Section 7 Help and Support From Services & Organisations The NHS You should make an appointment to see your family doctor (GP). Doctors however, may not be fully familiar with all personal issues relating to hearing loss so if your doctor's surgery has no visual display screen and might not hear your name being called, tell the receptionist you don't hear well. Ask for them to get your attention you when your name is called. If you are worried you might not hear what the doctor says, don't be afraid to ask for it to be written down. You could go ready armed with your own pencil and paper. You can always ask a hearing person to go with you, but if you do, make sure that the doctor doesn't just communicate with the hearing person and leave you out of the conversation. The outcome of a visit to a GP is likely to be a referral to either the audiology or ENT (ear nose and throat) department at your local hospital. Local Authorities Local authorities have statutory duties relating to the social welfare of their citizens. They employ a large number of social workers and will generally have a small team devoted entirely to sensory disabilities/deafness issues. See Section 27, item (e) about finding details of the local authority Adult Social Care Services according to where you live. The local authority may be able to provide equipment like textphones and alerting devices. Your local Fire and Rescue Service will provide advice on specialist fire alarms for people with hearing loss and may be willing to provide and fit them. Hearing Therapists Hearing therapists are employed by NHS audiology clinics and some local authorities. They can offer counselling to help with the psychological and emotional effects of hearing loss, balance and tinnitus problems. They can also help you to come to terms with your hearing loss and to develop new skills and strategies for dealing with communication and the situations that are causing particular problems in your everyday life. They may also offer counselling to partners and family members to help communications in those relationships. Private Healthcare You may prefer to pay for your hearing aids, or if you or your employer has insurance cover for the cost you can directly approach one of the private sector providers. All such companies are strictly controlled and should follow exactly the same procedures as the NHS. Now that digital hearing aids are the standard supply in the NHS, the main claims made by the private sector are speed and customer care. The Internet Most people will be aware of the abundance of information on the Internet and many sources of help and support are referenced throughout this resource. Page 1 of 2.

17 Help and Support from Services & Organisations, Section 7 If you don t have Internet access of your own, all public libraries now have Internet enabled computers that you can use and you will normally find that library staff are very willing to help any users who have little or no experience using the Internet. Lipreading Classes Lipreading classes, see Section 11, will enable you to learn and practise new communication strategies in company with others with similar problems. Lipreading teachers are also very knowledgeable about other services and organisations that may be of assistance. Some courses, known as Communication Tactics, include both lipreading skills and other strategies that can help people with hearing loss understand what is said. Advice can be obtained from ATLA see Section 27, part (b). Rehabilitation Courses In addition to local services there are also organisations which run rehabilitation courses. Hearing Link has residential courses for newly deafened people and their families and deafplus may also have some useful weekend events and courses, see Section 27, part(a), for addresses of helpful organisations. Charities and Helpdesks Charities for people with hearing loss will always try to provide information and help regardless of the type of work that they are engaged in. Some charities however, are actively trying to develop that part of their work. Hearing Link now have volunteers with substantial hearing loss working on the Helpdesk. Other charities such as NADP have an e- mail group for members, all of whom have substantial hearing loss, where any topic you wish to raise will usually attract a very lively interactive discussion. Local groups Local groups for people with hearing loss (and lipreading groups) can also provide valuable peer support. You will almost certainly find empathy, understanding and good advice, so it is well worthwhile looking to see if any local groups are available nearby. Enquire through your library, GP and local audiology (Adult Hearing Services) department but don't get too disappointed if there are none locally because there are far less than needed. Points to Remember With severe/profound hearing loss you may not be able to hear your own voice too well and be unsure whether you are speaking too softly, too loudly or perhaps not clear enough. After a while, friends and family will no doubt give advice but it s a rather sensitive topic to raise and any advice may get rather delayed, more so perhaps if you live alone. So, rather than wait for others to notice, it s far better to ask someone. Taking the lead in that way, to remove any doubts, will help you relax and move on with confidence, knowing that all is well. Page 2 of 2.

18 Section 8 What to Expect from your Audiologist The services provided will depend very much on the extent and nature of your hearing loss but whether your loss is mild or profound, gradual or sudden, your first contact is your own GP, who will carry out a brief examination to find out what services you need. For most people that will be Adult Hearing Services but if your hearing loss is substantial, sudden or complicated with other problems, you will most probably by-pass that route and be referred directly to an ENT (Ear, Nose and Throat) specialist working at a main hospital. Adult Hearing Services If you are referred to Adult Hearing Services, it may be at an NHS location but, depending on where you live, you may now have a choice, since Adult Hearing Services in England are being opened up to Any Qualified Provider (AQP). That is a process where any providers that are able to qualify by meeting the standards of competence and capability required can bid for a contract to run an Adult Hearing Service within a specified area. Over 100 AQP services were operating in September 2013 and will gradually extend to the whole of England. If AQP is operating in your area, you will have to choose from a range of providers that could include; your local NHS service (after itself qualifying through AQP), high street hearing aid chains, local independent companies or social enterprises. It is important to remember however that AQP organisations have qualified and been approved only for carrying out basic hearing testing and the provision of appropriate hearing aids to suit the test results obtained. They have a duty to ensure that people receive a joined-up service and will make referrals where applicable, but AQP provision does not include any specialist testing, medical or surgical care, hearing therapy, rehabilitation or the treatment of tinnitus and balance problems. You may be able to make your choice when you are with your GP, but more often this will be done through an independent referral management centre an administrative organisation that will contact you to provide information and let you know who you could choose in your area. Your Hearing Assessment For a hearing aid assessment, you will be fitted with an earphone headset and asked to press a button when you hear sound coming through the earphones. A series of sounds, generally pure notes, are then fed to each ear, loud at first but then reducing in intensity until you are no longer able to hear them. As the test progresses, a graph called an audiogram will be produced for each ear to show your hearing capability across the full frequency range of normal hearing. The tests may then be repeated with the sound input moved from the headset to the bone behind your ear. A bone-conductivity audiogram will then be produced for each ear to see if that conductivity route provides any advantage. If appropriate, a spoken word test may also be carried out to assess how well you can hear speech, with and without background noise. Page 1 of 2.

19 What to Expect from your Audiologist, Section 8 What you should expect to be offered 1. Equipment After the hearing assessment, the test results should be explained to you and you should be advised on the most suitable aid for your hearing needs. You may be offered either one or two digital hearing aids and either open fit or moulded earpieces, see Section 11, to suit the type and severity of your hearing loss. If your hearing loss requires more than standard hearing aids you will be referred on to ENT (ear, nose and throat) specialists at a main hospital, where you will be assessed for different types of hearing aid or implants. Modern digital hearing aids are quite small and discrete and should be available in a variety of colours. For NHS and AQP services, hearing aids are free at the point of delivery. Maintenance and batteries for the life of the aid and aftercare are also free. Hearing aids are simple to operate and you should get full instructions on how to fit, use and look after them. 2. Service and Aftercare AQP contracts run for three years after which time your hearing aid provider must contact you to see if your aids are still meeting your needs. If they are then they will give you another year's aftercare. If they are not, or you are not happy with the service you get, you need to see your GP again and ask either for another referral to the same provider to choose a new provider to take over your care. You are not locked into a three year contact If you need help with tinnitus or balance problems, you should make that clear to your GP and hearing service provider because they are not part of the routine AQP hearing service but you should be referred on to the most applicable specialist service in your area. 3. Other Support Other support is not part of the standard hearing service so you may find a wide variety of support at different locations across the country. What you need is mostly in the form of training or peer groups which your audiologist can only arrange if there is active patient participation, so please do try to get involved, firstly to help yourself but also to help others as well. Enquire about existing groups (or starting new groups) for: Hearing aid use and maintenance Tinnitus support Balance support Cochlear Implant peer support Lipreading If you are being assessed for a cochlear or other implant you will be in the hands of an NHS specialist team. Far more tests will be carried out to assess your need and suitability for an implant and after fitting, the team will take you through a full range of rehabilitation and support to help you to regain your independence. Page 2 of 2.

20 Section 9 Self Help and Personal Support Can you help? If your hearing loss has occurred suddenly, you may be very anxious indeed to get help but for hearing loss occurring gradually, denial, delay and frustration can be all too common. You need to talk about your feelings before you can work through them but with the right kind of help and encouragement you can do that. It may be a slow realisation but when you know that you have a hearing loss, doing something about it as soon as possible will help all concerned not just yourself. Please try to see your GP, to make sure that you get medical help and then you can move on to pick up the relevant communication skills and coping strategies that will improve your confidence and make you feel so much better. Watching people talking is an interesting phrase for people with any substantial hearing loss. It s what you will do one way or another, so make sure it s the right way. If you have picked up the right skills you will be actively watching people talking to pick up what they are saying. If you take the opposite path and try to ignore your hearing loss, you may find when you look at people that you are picking up less of what they are saying and are just passively watching people talking rather than understanding what they are saying. Your hearing loss will not get better on its own and you will increasingly get left out, so do please take a lead and try to stay connected. Other people have to adjust as well It is important to realise that husbands, wives, partners, family, colleagues and friends will all be affected by your loss of hearing, or rather their inability to communicate and relate to you as they did before. It may be hard for them to accept that they can no longer easily engage in trivial conversation, share casual jokes or exchange intimacies. In the family group and social settings you are unlikely to be the heart and soul of the gathering - rather you will be looking to someone else to relay the gist of the conversation to you. It is hard for them to accept that communication will generally be on a one-to-one basis. Even then it may not be easy, especially in the beginning before you have learnt new communication skills. They too need help. Children can be surprisingly helpful Children may be particularly difficult to communicate with, especially if they are not familiar with you - their high voices are not easy for hearing aid and cochlear implant users to cope with. The toddler may not speak very clearly, the older children may prefer to take the easy way out and communicate with the hearing people, the adolescent may be embarrassed to go out in company with their deafened parent. All is not lost - the toddler does not have a large vocabulary and if a friend relays what they say and how they say it, including all the mispronunciations, you can respond appropriately. Children, once they understand the problem and are given the right leads, can be the world of understanding and support. So much so that some parents with hearing loss have to be careful not to become too dependent on them! Page 1 of 1.

21 Section 10 Learning to Adjust Adjustment will be a lot easier if you accept the reality of your loss but it may take time to absorb the new situation. It is best to: Work through the pain of your loss rather than try to avoid it Until you have acquired the personal skills and experience to deal with substantial hearing loss, you may frequently find yourself withdrawing from communication difficulties, to avoid the problems. Doing nothing feels like a safer option and motivation is hard to find. It is important though, to recognise that not wanting to do things is so much a part of the problem and has to be tackled. Not many people feel good after allowing themselves to give in to something, so doing even a small task reinforces the fact that you can do it. You must come to terms with your loss and get started. You may not enjoy it at first but as you progressively push yourself each step further, you will be proud of what you have achieved. It doesn't come easy though and there are no short cuts. You have to work hard and stick at it. Challenge your thoughts and don't be afraid As your hearing deteriorates, you may get by for a time with bluffing or guessing but when it gets to the stage where you frequently lose what people are saying, it is almost impossible to avoid negative thoughts. When meeting other people, your hearing loss will almost certainly have left you feeling unsure or anxious about whether you can cope, whether you can avoid making a fool of yourself or even feeling that you are a failure. When every conversation is a challenge, the ever present anxieties and fears can easily create a vicious circle where your thoughts start to make you worse rather than better. To break out of that negative cycle, you will need to challenge your thoughts, build new skills, be bold and take chances. Don't be afraid but choose carefully where you start. A saying attributed to Henry Ford may be useful to remember as set out along this difficult path; no matter whether you believe you can or believe you can't, you will always be right. Build your new skills gradually and carefully Your difficulties in dealing with discussions where you really need to catch every single word may have concerned you most but that is much the same as trying to run before you can walk. Look to build your skills in easier options first. For example, find out if there are any hobby or activity groups locally, where you have a common interest; where people will welcome you into the team and you will know a good bit about the subject matter of many conversations even if you are not hearing a good part of them. Page 1 of 2.

22 Learning to Adjust, Section 10 Better still, try to meet other people with substantial hearing loss most of whom will be only too pleased to use their first- hand experience to empathise, help and guide you through your difficulties. Be realistic about what you take on but keep trying to do that little bit more. Setting Goals Taken as a whole, the number of problems that hearing loss can bring in its early stages can seem rather overwhelming and leave you feeling that it is all too much. But somehow you have to find a way! Goal setting can be a very useful in doing that. It lets you identify and focus on the targets that are most important to your own personal circumstances - small parts of the whole where you can see the benefits and will be able to measure the progress as you get closer to your goal. The sense of achievement and satisfaction in knowing that you are progressing and fighting back will improve your confidence and outlook and gradually, hopefully, get you wanting to take on more. Remember that the best way to get to the top of a mountain is to concentrate on the section you are tackling and let the achievement of completing each section keep you positive and motivated. If you let yourself keep looking how far it is to the top, you can easily get overwhelmed in despair at the extent of what remains to be done and start to feel that it is all too much. The same may be true of overcoming significant hearing loss. Relax That s easy to say but difficult to do. It s very much worth trying though because few things work well when you are anxious, edgy and tense. You can only do your best, so relax, keep calm and look at what you have achieved rather than worrying about what you have not. Keeping relaxed and calm is just another way of helping to build up your confidence and selfbelief and it can work very well as you bring all your new skills together. Remember that different people will adapt to their loss in different ways. There is no single right answer for everyone This resource is a guide to help you with the personal skills and information that you will need to acquire as you learn to adjust. It is also a guide to the people and services that can help you with the difficult task of adjustment and adaptation, so please make sure you seek all that help as widely as you possibly can. Adjustment to change is an ongoing process in life and there are always new challenges to overcome. Deafness is just another part of that process please don't let it take control of all that you do. Page 2 of 2.