“But I Don’t See You As Disabled!” The Flip Side of “But You Look so Normal!”
August 29, 2014
Forgetting
September 2, 2014

If You’re Sinking, Who Will Save You?

One of the things I love about being part of this community is the international perspective. It’s a real eye-opener learning about the experiences of fellow hearing aid users in other countries. In this post, I’d like to explore the issue of a lack of ‘follow up support’ for adults new to hearing aids here in the UK and I would love to know if you have a different experience where you live. Of course, there may be some great local initiatives in the UK that I don’t know about so, if you have some examples of good practice, this would be a great place to share them!

Lifebuoy

Photo credit: Stephanie Booth

So, in the beginning, you’re told you need hearing aids (or perhaps just the one) and you are in shock. Where do you turn for help and advice? When you went deaf or started to lose your hearing, did you even know anyone with a hearing aid? I didn’t. Well, I didn’t know anyone well enough to actually ask them anything about living with hearing loss and using a hearing aid. I was stuck: in limbo, between a hearing world and this place I found myself. I really needed a guide – someone to show me the way, tell me how the system works and explain to me the ins and outs of different types of hearing aids and their accompanying paraphernalia. I felt I was drowning in a sea of information I found on the web: I needed someone to throw me a lifebuoy. Here in the UK, the NHS is over-stretched and staff don’t often have the time to think about the psychological impact of becoming deafened or gradually losing your hearing. One hospital has recently carried out a much publicised consultation on the proposal to cut funding to the provision of hearing aids to adults with mild to moderate hearing loss. I wonder if they think that it’s not worth funding them because once fitted with the aids many people may disappear off their radar and not go back. I wonder if they might do some research about why so many adults who are given an NHS hearing aid might stick them in a drawer in preference to using them. And, I think if they did, they’d find the following reasons:

  • In my experience, patients aren’t routinely offered follow-up appointments to have adjustments made (e.g. after a couple of hours, then a couple of days, then a few weeks) and, without remote controls and access to software to make these adjustments yourself, a one-off setting-up appointment is simply not sufficient for most people and so we struggle to get used to the aids and sometimes, sadly, they are abandoned.
  • People may not want to keep going back to ask for adjustments because they feel they are ‘wasting NHS time’.
  • First-time users may assume that the settings they have are the optimum setting and they might think there are no improvements that can be made.
  • The hearing aids on offer in some hospitals are still the old NHS colour and people may find this off-putting (like having National Health specs at school in the seventies: no one wants that).
  • In the main, the NHS provision still focuses on ear moulds and for many people these are not their first choice.  Some prefer the comfort and discreet invisibility of the open ear/receiver in ear fit but this is not always available on the NHS (even when it is a viable solution for that individual’s needs). (Again, it’s a bit like the ‘National Health specs’ thing.)

Possibly, the Any Qualified Provider (AQP) model may go a long way towards remedying these problems and I really hope it does. I for one find it so much more convenient to go to my high street provider than the local hospital which is two bus rides away. Also, they don’t make me feel I’m being a nuisance or unreasonable if I need a programme adjusting, adding or removing. But even once you’ve got the hearing aids part of the equation sorted, there are still other issues: who can you talk to about the isolation, depression, period of adjustment? Where can you go to try out hearing loops, neck loops, FM systems and amplified phones? Becoming deafened involves a steep learning curve. Where can you go for information and support? How is it supported in your country? Tell me: I’m all ears!

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Phonak hEARo, Angie is a freelance journalist, copywriter, website designer and social media consultant. (www.aspinallink.co.uk) She lives in Scotland with her husband Richard, and their Westie, Tilly. Angie was diagnosed with Otosclerosis in her right ear at the age of 30. In 2011, she suffered sudden profound hearing loss in her left ear. She now uses a Phonak CROS II with a Phonak Audéo V hearing aid. You can follow Angie’s international discussion group #HearingLossHour on Twitter @hearinglosshour.
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Phonak hEARo, Angie is a freelance journalist, copywriter, website designer and social media consultant. (www.aspinallink.co.uk) She lives in Scotland with her husband Richard, and their Westie, Tilly. Angie was diagnosed with Otosclerosis in her right ear at the age of 30. In 2011, she suffered sudden profound hearing loss in her left ear. She now uses a Phonak CROS II with a Phonak Audéo V hearing aid. You can follow Angie’s international discussion group #HearingLossHour on Twitter @hearinglosshour.