New Zealand Cochlear Implant Consumer Group. Submission to the Health Select Committee On the: Cochlear Implant Consumer Group Petition to:

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1 New Zealand Cochlear Implant Consumer Group Submission to the Health Select Committee On the: Cochlear Implant Consumer Group Petition to: Increase funding of Cochlear Implants for deaf adults, facilitating parity with other severely disabled New Zealanders. The New Zealand Cochlear Implant Consumer Group (NZCICG) was formed in 2011 representing those New Zealanders who have become deaf and for whom, deafness has had a significant adverse impact on their quality of life. NZCICG presents a united voice for those deaf adults for whom deafness is a severe disability. NZCICG provides peer support to those living in a world of silence and who wish to be part of the hearing world. Together, we work toward making a hearing world accessible to all whom choose it through cochlear implant technology The NZCICG vision is to Ensure the ability to hear is available to all. Our aim is to increase accessibility to a hearing world through cochlear implant technology for those for whom deafness is a severe disability. Freed to hear again, we can participate fully in our lives again, enhancing health, wellbeing and aspirations. The New Zealand Cochlear Implant Consumer Group wish to be heard in support of their submission. Inquiries to: Lyn Polwart NZCICG Chairperson 11 Albert St Pukekohe Auckland

2 Table of Contents Executive Summary... 1 Introduction... 2 The technology... 2 Discussion... 3 Recommendations... 8 References... 9

3 Executive Summary The purpose of this submission is to expand on the issues raised in the New Zealand Cochlear Implant Consumer Group petition, which was presented, to Parliament in March The petition called for increased funding of Cochlear Implants for severely hearing disabled adults to facilitate parity with other severely disabled New Zealanders. Presently there are 180 adults awaiting an implant, with 20 being funded per annum. Based upon these figures, waiting times can up in excess of 7 years. This submission recommends a reprioritization of cochlear implant surgery from a low to high priority based on quality of life gains to attain parity with other severely disabled New Zealanders. 1

4 Introduction The New Zealand Cochlear Implant Consumer Group (NZCICG) welcomes the invitation by the Health Select Committee to present this submission following the groups petition to parliament in March Its purpose is to both highlight the significant adverse impact on quality of life for those adults and their family members who are experiencing a severe hearing disability, and the comparative cost benefits and health utility gains of cochlear implants as a means of reducing this impact. NZCICG has consulted its members, severely hearing disabled New Zealanders waiting for a cochlear implant and health professionals in the preparation of this submission. This includes but is not limited to: cochlear implant consumers, severely hearing disabled New Zealanders, ENT surgeons and Audiologists. It must be noted that NZCICG recognizes the perspective of people who may not consider deafness a disability that needs to be treated. However, it is unlikely that adults who become deaf (and their family members) will become proficient users of sign language and integrate into the Deaf Community. For many severely hearing disabled adults, deafness has a significant adverse impact on their quality of life. NZCICG has a wealth of knowledge and understanding of the complex range of issues (financial, professional, social and emotional) affecting severely hearing disabled New Zealanders and our expertise is at the committee s disposal. We would appreciate the opportunity to make a meaningful contribution to facilitate parity with other severely disabled groups and increase access to a hearing world. The technology A Cochlear implant consists of an internal and external component. A microphone and sound processor are worn externally behind the ear. The sound processor is connected to a transmitter coil, which is worn on the side of the head. Data from the transmitter coil are passed to a receiver stimulator package that is implanted into a surgically fashioned depression in the mastoid bone (underneath the skin behind the ear). The receiver stimulator translates the data into electrical pulses that are delivered to an array of electrodes. These are placed surgically within the cochlea. The electrodes stimulate spiral ganglion cells that innervate fibers of the auditory nerve. The activation of electrodes provides a sensation of hearing, but does not restore hearing. 2

5 Discussion 1. This submission is also informed by research (international and New Zealand based). In the absence of any New Zealand based research, extensive international research has been referred to, including the cost effectiveness and health utility gains of cochlear implants for severely hearing disabled adults. 2. Presently, 20 severely hearing disabled adults receive a fully funded cochlear implant per annum in New Zealand. 3. There are approximately 180 severely hearing disabled adults on the waiting list for a cochlear implant. This list is growing on average by 10 per month. Figure 1 below highlights the age demographic of those people on the waiting list. Figure 1: 4. Up to 4,000 severely hearing disabled adults in New Zealand could have their hearing restored by a cochlear implant. 5. Research has shown that for severely hearing disabled deaf adults unilateral cochlear implants are likely to be cost- effective. When measured on a life- time horizon, and compared to either non- technological support or hearing aids, unilateral cochlear implants are highly likely to be cost- effective for adults at willingness to pay thresholds of 20,000 or 30, 000 per QALY. 1 1 Peninsula Technology Assessment Group (2007). The effectiveness and cost effectiveness of Cochlear Implants for severe to profound deafness in children and adults: A systematic review and economic model. 3

6 6. The NICE Guidelines on Cochlear Implants for severely hearing disabled adults notes that Cochlear Implants are a cost effective use of NHS resources given the health utility and quality of life gains to deaf adults Within the Ministry of Health, the elective surgery group ran a programme which aims to implement a strategy to achieve improved equity of access to treatment, and to improve the management of waiting times for services 3 8. However, many severely hearing disabled adults are languishing on a fluid waiting list as Cochlear Implants are presently categorized as a low priority for funding in New Zealand, yet the health utility gains surpass those of other prosthetic procedures. 9. Research into the New Zealand booking system for surgery, notes that NZ is unique in comparison to other countries, in that funding decisions are based on prioritization rather than clinical decisions of health need. 4 Therefore, severely hearing disabled adults are being unduly disadvantaged. 10. Patient reported experiences highlight just how detrimental this situation has on their lives: The effects which deafness has on ones life cannot be over- estimated. Not only did I lose my Practice, my livelihood, my savings for retirement - all traumatic never to be recovered results, but I lost my place in our Society. Deafness isolates you from your family, from your friends, from every avenue of previous communication. Such humble necessities as shopping, making a Doctor's appointment, asking for directions, even how much an item costs, are all a minefield for the deaf. A deaf person in company causes awkwardness. With the best will in the world the pace of life cannot be slowed down until the deaf person has "got it". We who are deaf are all too much aware of the imposition on the most understanding people, and the result is that the deaf will withdraw still further into their isolation. In their own little and silent world they muddle through, knowing at least that they are not a trouble to anybody. Likening it to a living death is not too much of an exaggeration. 2 National Institute of Health and Clinical Excellence Technology Appraisal Guidance 166 Jan Accessed 20 th April 2012: 3 Williams, H. and Gandar, P. (2004). Summary Report of the Elective Services Orthopaedic Continuous Quality Improvement Pilot. Wellington: Elective Services Group. 4 Derrett, S. (2005). Booking systems for elective services in New Zealand: Literature scan to identify any ethical issues of national significance. Centre for Health Planning and Management. 4

7 I feel cut off from my family, my friends and loved ones. I live in a silent world, where my ability to communicate with those around me has been very cruelly robbed from me. My children miss not having me there as the wise ear to sound their issues off, and to guide them through their life s journey. As parents, we want to be there for our children, giving them words of wisdom and encouragement in every situation. But when you cannot hear your child s spoken word, that ability to guide and mentor diminishes, and so too does your role as a parent. I am profoundly deaf, and one of the 180 New Zealanders awaiting a Cochlear Implant. I will be 65 years of age in June this year, when I shall be officially regarded as retired, but in fact I was forced into early retirement in June 2007 because my hearing had deteriorated to such an extent that I could no longer safely work in my clients' interests. I had my own Practice, providing Tax & Investment Planning advice to members of the wider Medical Professions. My hearing made it impossible to communicate with clients face to face, or over the telephone, and with large sums of capital involved, it was not safe to risk a "misheard" instruction. Inability to understand verbal communication results in feelings of isolation when you are left out of group conversations. To avoid shame, people with hearing loss sometimes choose isolation. The stress of living with hearing loss can make you distrust others, have chronic sadness or depression, nervousness, anger or irritability, isolation, poor self- image, feelings of incompetence or inadequacy, or feeling marginalised. Feeling depressed as a result of your hearing loss, you experience fear, anger, self- reproach, self- loathing, guilt, incompetence, unworthiness, and sadness. You may see the future as hopeless. At worst, thoughts of suicide can occur. The prejudices that are unfortunately often associated with hearing loss can exacerbate low self- esteem. People with hearing loss carry a social stigma as troublesome, slow witted, and tiresome. Overall, being profoundly deaf has had a very drastic effect on my quality of life, not to mention that of immediate family and acquaintances. The inability to conduct the simplest of conversations, even in favourable hearing situations frequently leads to frustration and distress for all concerned. It is therefore my expectation that Government funding needs 5

8 to be made available for Cochlear Implants so that recipients' quality of life can be restored to some degree of normality. I have been on the waiting list for an operation since December 2009, but in fact I was a year before that undergoing tests and examinations in order to be accepted as a Candidate for an Implant. Owing to lack of funding, the procedures to becoming a hopeful and hopefully patient waiter are most rigorous. Up to now 180 of us have made it, but there are many thousands of New Zealanders who suffer, literally in silence, not knowing help might be available to them. 11. Furthermore, the NICE guidelines also highlight the adverse impact severe hearing loss has on adults and their quality of life, noting: For a person who becomes deaf and is used to functioning in a hearing environment, deafness can have a significant impact on their quality of life. For children, deafness may have significant consequences for linguistic, cognitive, emotional, educational and social development. Loss of hearing affects an adult s ability to hear environmental noises and to understand speech; this can affect their ability to take part in their daily activities and be part of their usual social and professional networks, which can lead to isolation and mental health problems Dr Robert Gunn (2010) noted that following the cost utility benefits found by the National Institute for Health and Clinical Excellence (NICE) in relation to cochlear implants as a hearing solution for severely hearing disabled adults, deaf patients in the UK receive their cochlear implants in a timely fashion. He goes on to highlight that in most other developed countries, which have insurance- based health systems, cochlear implants are on the approved prosthesis list for surgery. Presently, in New Zealand this is not the case, which further exacerbates accessibility issues Severely hearing disabled adults on the waiting list for a Cochlear Implant have qualified under the present CPAC scoring system for eligibility. However, they are denied surgery within the mandated 6- month period for elective surgery as set for disability (e.g. mobility and vision). This form of discrimination has resulted in a huge disparity for deaf adults in New Zealand. 5 National Institute of Health and Clinical Excellence Technology Appraisal Guidance 166 Jan Accessed 20 th April 2012: 6 Gunn, R, G., (2010). Adult cochlear implants in New Zealand- a chronic funding issue. NZMJ 123:1321 6

9 14. For those patients languishing on a fluid, ever increasing waiting list, the adverse impact on their lives in immense: You know, when I was accepted onto the waiting list for a Cochlear Implant, I was so elated I thought I am now going to be set free and no longer be a prisoner to this disability. Then I found out I may never get it because of the waiting list, the lack of funding and the way the scoring is done. It was like someone had just played a cruel joke on me that last bit of hope had been taken away. It s devastating and I feel I ll never be set free from this world of silence. 7

10 Recommendations 1. The New Zealand Cochlear Implant Consumer Group recommends that the government increase funding for Cochlear Implants to ensure those severely hearing disabled adults who meet the CPAC scoring criteria are implanted within the 6 month mandated period. 8

11 References Derrett, S., (2005). Booking systems for elective services in New Zealand: Literature scan to identify any ethical issues of national significance. Centre for Health Planning and Management Gunn, R, G., (2010). Adult cochlear implants in New Zealand- a chronic funding issue. NZMJ 123:1321 National Institute of Health and Clinical Excellence Technology Appraisal Guidance 166 Jan Accessed 20 th April 2012: Peninsula Technology Assessment Group (2007). The effectiveness and cost effectiveness of Cochlear Williams, H. and Gandar, P. (2004). Summary Report of the Elective Services Orthopaedic Continuous Quality Improvement Pilot. Wellington: Elective Services Group. 9

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