Making audiology youth-friendly

Image courtesy of NDCS

Confession time: until I was around 25, I didn’t have a clue how to read an audiogram. If you asked me as a child, how deaf I was, I probably wouldn’t have been able to tell you. Ask me to retube my hearing aid, and I probably would have gone running to Mummy.

Why? Because nobody ever really explained it to me. I’ve blogged before about my unhappy experiences at the audiology clinic as a child. Audiology services fitted me up with a hearing aid as a child and then pretty much left me to it. Rarely was I asked for my opinion or views. Rarely did a trip to the clinic go without my audiologist trying to talk to me when he had just taken my hearing aid off. Worse of all, the hearing tests used to give me terrible tinnutis, and the audiologist had the nerve to tell me off when I incorrectly pressed the buzzer during the hearing test because my ears were beeping and ringing all over the place.

For these reasons, I’m really excited about the National Deaf Children’s Society Over to You project. It’s looking to improve deaf young people’s experiences of audiology services through a project in Hackney, Tower Hamlets and Newham, my old hood in London. I think it’s a really important job and it’s great that audiologists in this area have stepped up to the challenge, to make their services youth-friendly and to work to empower deaf children and young people.

Luckily, I now have a great audiology clinic. What makes them special is that they take the time to explain things to me and to ask me questions and get my views. Best of all, they NEVER try and talk to me when I haven’t got my hearing aid on!

Watch this space for more info about the Over to You project. In the meantime, if you want to share your good/bad audiology experiences, drop a line below!

Still no answers from Government on audiology training

Image courtesy of http://www.lcchs.nhs.uk

I mentioned a while back that our requests for information from the Department of Health on cuts to audiology training have not been terribly successful, if the letter we received a few weeks back from the Department was anything to go by.

Sadly, things have not improved. Last week, we got replies to some parliamentary questions that Norman Lamb MP, Liberal Democrat Shadow Health Secretary had raised on the National Deaf Children’s Society’s behalf. Norman was trying to tease out more information about the proposed new audiology training programme, which I fear is leading to cuts by the backdoor.

To give one example, Norman asked when the first new paediatric audiologists will graduate under the new audiology training programme. After all, the Government should not be cutting existing places unless new graduates are ready to roll out quickly, surely?

The answer? “Working with stakeholders, we are developing a range of education and training programmes which will have a focus on audiology… These will encompass the needs of both adult and paediatric services.”

I might take that as a “er… don’t know, guv”.

The answers to the other questions weren’t much better. Indeed, the only information of use they provided was on the number of audiology training places over the past three years.

It all makes for a very frustrating campaign where the Department seems determined to provide no reassurance or answers to anything. However, it’s not all bad news. With over 460 people now having contacted their MP about our Hear for the Future campaign, the Department has started to realise it can’t ignore these concerns forever. Civil servants at the Department have just agreed to come and meet with us. Hopefully, we’ll then finally get some answers.

In the meantime, your help in keeping the pressure on the Department is still needed. If you haven’t already, please contact your MP, using our special thingybob on NDCS’s website which makes it easy as pie to do this. I reckon if over 500 people do the action, the Government will be even more proactive in trying to address our concerns…

Audiology memories

All of NDCS’s work on the Hear for the Future audiology campaign got me reminiscing over the weekend about my own experiences of audiology as a deaf child. Other people go to parties or relax over the weekend, but it was raining a lot so I thought I would reminisce instead.

One of my earliest memories involved a trip to audiology when my Mum went to town to visit the hospital for some hearing aid batteries. The audiology clinic didn’t have any, apparently, because of cuts. To this day, I can remember my Mum declaring loudly that she would never vote Thatcher again. Looking back, this was probably my first “political experience” as a child.

Until I was 11, I wore a very bulky round-the-body hearing aid, the kind you now only see in museums. My sister had had a behind-the-ear hearing aid about three years before me and I was intensely jealous that I had to wait. I think I may have tried to steal her hearing aid at one point.

One of the things now that strikes me most is that nobody in the audiology clinic ever talked to me directly or listened to me. For example, I hated wearing a hearing aid in my left ear when I was a child because I couldn’t hear anything. Instead, I would just ‘feel’ a wall of sound that was hurt my head. Despite my complaints, I was still made to wear it, and nobody spent any time looking into why I always just switched it off. In addition, nobody ever explained anything to me. It wasn’t until I was around 25 that an audiologist finally explained to me what an audiogram meant or how to look after my hearing aid. I knew very little about my own deafness.

Finally, I was often stunned by how deaf unaware some audiologists would be. All to often, talking to me with his back to me and without my hearing aid on, and then just shouting at me.

Sadly, I’m not a child anymore and not allowed to go into paediatric audiology clinics without getting into a lot of trouble. But the impression I get is that things are now much better, if not perfect. Waiting times are down, according to Government figures, and new modern digital hearing aids are freely available. Certainly, I’m very happy with my adult audiology clinic, which is full of audiologists who take the time to talk to me and make sure I leave with what I need.

All of this makes me feel anxious that the cuts to audiology training courses threaten to take us back to the days when my Mum, not the most political of people, turn into a raging hardcore activist, plotting to bring the downfall of the Government. I’ll be getting my dear Mum to contact her MP to avoid it getting to that stage this time around. If you want to do the same, the NDCS website allows you to pop an email to your MP in 3 minutes. It even works out who your MP is.

What are your experiences of audiology? Are you equally worried by possible cuts and shortages in number of trained staff? Have your say and leave a comment below. Be good to hear your memories too.

Department of Health ignore concerns on audiology services for deaf children

This month has not been a good one for my anger. The Government denying equality on exams to deaf students. Deaf students having to wait for their Disabled Students Allowance. UK Film Council deciding that access to the cinema for deaf people is not a priority. And the Department for Children, Schools and Families missing the memo about British Sign Language having equal status to other languages. I’m now lobbying NDCS to provide me with something in the office to keep me calm. Maybe a rabbit.

And, of course, the cuts to audiology training. I got a reminder why it’s so important NDCS supporters contact their MP when we received a letter from the Department of Health on our concerns that audiology training courses are being cut, when there are already shortfalls in highly trained paediatric audiologists.

It was a spectacularly unhelpful letter. It was clearly written by a civil servant who’s been burning the midnight oil reading the book “How to say absolutely nothing at all”. It doesn’t respond to any of the points or concerns raised in NDCS’s letter. It pretends that we’re living in a world where everything is just dandy, everything will be alright on the night and there’s nothing to worry about at all. Worse of all, it says that we can be reassured by the fact that local health bosses have announced their plans on audiology training early this year. I may be missing something but I’m unsure how anyone can be reassured by a local health boss in one area announcing a plan to slash by half the number of audiology training courses. It is immensely frustrating to take the time to write about serious concerns and get a reply which just ignores them. The Department of Health must have a little sandpit somewhere where officials can bury their heads.

Hence, the need to contact your MP to ask them to support our Hear for the Future campaign to stop the cuts to audiology services. Over 300 people have done so far, which is great, but it would be great to get this up even higher. The more people who speak out, the more Government Ministers will take note and ask hard questions of their civil servants. And when that happens, hopefully then we can reverse the cuts and make sure deaf children can be seen quickly by someone who can diagnose the deafness and fit the right hearing aids asap.

Here’s hoping my anger levels reside in March…

How you can help stop cuts to audiology training

Image courtesy of http://www.childhealthbc.ca

For the past month, the National Deaf Chidren’s Society (NDCS) has been looking into what’s going on with the Government’s plans to reform audiology training. What have we found out?

1) The cuts are definitely happening. We’ve seen a letter (though we weren’t meant to) from civil servants at the Department of Health saying that “in the current financial environment, this [Government plans] inevitably will mean some reductions in commissions”. We know that local health bosses in one strategic health authority is cutting the number of audiology training places by half. Others are telling existing students that they may not be able to finish the course.

2) The Department of Health consulted on changes to audiology training last year. The consultation closed in March 2009, but government Ministers still haven’t cleared a statement on a way forward nor explained how they’re taking into account views from the consultation. Yet the cuts are going ahead anyway…

3) Audiologists are up in arms. Nearly 2000 signed a petition (now closed) saying how unhappy they are about all this. That’s a lot of angry audiologists.

4) Even though the cuts are happening in England, feedback from professionals is that this is going to have knock-on effects for audiology services across the UK because many audiologists train in England.

5) Digging through audits from the newborn hearing screening programme, one of the most commonly cited problems is lack of audiology capacity. I read one report for an area in west London where 35 babies may been misdiagnosed by audiologists and “inappropriately discharged” because of there not being enough trained staff.

Crikey. With all this in mind, NDCS has decided to launch a campaign to stop the cuts. It’s called Hear for the Future (pun intended) and the aim is to ensure we don’t put audiology services for deaf children at risk. Deaf children need the best possible start in life to achieve their potential and be independent. They need more, not less audiologists, so they can be quickly assessed, fitted with hearing aids, and get the ongoing support they need. Personally, I would say that cutting the number of highly trained audiologists is, on balance, a pretty stupid thing to do.

So what is NDCS doing about it?

1) A letter has been sent to the Secretary of State for Health, Andy Burnham MP, to set out our concerns.

2) Letters have also been sent to strategic health authorities across England to get confirmation on their plans for audiology training and appeal to them to stop any cuts.

3) MPs are being briefed and NDCS hopes to get a few questions raised in Parliament on this issue.

And how you can help? Well, NDCS has set up a new campaign action where NDCS supporters can email their MP to ask them to support the Hear for the Future campaign. It’s dead easy – bang in your postcode, the website works out who your MP is and pulls up a template letter for you. If you’re happy, click on send, and Bob’s your uncle.

The more people who take part, the more the Government will take notice and stop the cuts before it’s too late. So please do get involved. And please do also spread the word to everyone you know.

PS Apologies if you had been unable to click on the link to the action earlier – a misplaced comma and the whole thing went haywire. It should now be working.

Review of 2009 for deaf children… and predictions for 2010

Well, we’re already a week into the new decade / ice age, but for my first blog post of 2010, I’d like to look back at some of the highlights / lowlights of NDCS campaigns in 2009.

Highlights
The big one has to the campaign victory on acoustics, which dominated most of our campaigning activity from the past year. It was great to see all of our work, including a parliamentary event, briefings to MPs and mentions in parliamentary debates, reports on how lots of local authorities didn’t have a clue about the quality of acoustics in their new schools, all make a difference. The Government announcement in October that it would take action to require testing in new schools was a delicious moment which will make a big difference to the quality of education for deaf children.

Although it was quite a long time ago, the announcement back in January last year that the National Institute for Health and Clinical Excellence (NICE) would recommend cochlear implants as an option in one or both ears for all severely / profoundly deaf children was another biggie for deaf children. It follows lots of concerted and co-ordinated lobbying by NDCS and other deaf charities. A year on, nearly all local health bodies seem to be doing a good job with getting on with implementing the recommendations.

And although the dust hasn’t really settled on it yet, the Lamb inquiry into the special educational needs system offers the promise of lots of significant changes for deaf children and their parents. Laws are being changed as we speak by the Government to implement some of its recommendations.

For me, personally, the highlight is supporting and watch deaf young people campaigning in action for NDCS, whether at party conferences or our parliamentary events. It’s always good to see parliamentarians walk away realising what deaf children can achieve, providing they’re given the right support. It was also great to see Louis Kissaun, a deaf young star, on Shameless, the Channel 4 programme, this year.

Lowlights

The continuing failure by the BBC to provide access to its online news content continues to be depressing, especially on news stories that feature deaf children and young people. Quite a few people clearly seemed to have skipped class the day they were covering disability awareness training at the BBC.

And the continuing problems with Phonak Naida hearing aids are also a bit of a worry, though it’s good to see that the powers that be are working hard on this problem as we speak.

Predictions for 2010?

Apparently, there’s going to be a general election in a few months. Whatever the result, there are going to be a lot of new faces in Parliament and lots of new ideas for how schools and hospitals should be run. NDCS will be busy getting to grips with the new political landscape and making sure deaf children are high on the agenda.

It also looks as if we’re going to be doing a lot more campaign work around audiology services this year. More to follow on this, but a range of issues are cropping up, for example, on the training of audiologists. NDCS will be on alert making sure deaf children get the audiology services they need.

Here’s hoping it’s a good new year for deaf children and NDCS campaigns. Please do keep sending in your comments, thoughts and any stories about how deaf children in your area are doing. We’ll do our best to respond and incorporate into our campaign work. Happy new year!

Update on Phonak Naida hearing aids

Earlier in the week, one of my colleagues at NDCS met up with some Phonak hearing-aid makers to discuss some of the ongoing problems experienced with their Naida hearing aids. A lot of people, myself included, have had teething problems with it. Happily, mine have now resolved themselves and I can now really tell the improvement with the new hearing aids. But, worringly, children seem to be having particular problems with this hearing aid. Some audiologists have stopped giving out the hearing aid to very young children, because the child may not be able to communicate that their hearing aid is playing up.

Phonak have been looking into it and apparently, if I’ve understood the science, there is a theory is that a particular type of hearing aid battery which is being used in some areas, can potentially cause a spike in the voltage which dupes the hearing aid in thinking there is no power left, and shutting itself down. The problem may not actually be restricted to children; it’s just that adults simply turn their hearing aid on and off again and think nothing of it. There are a range of other theories and Phonak scientists in Switzerland have been busy in labs have been trying to get to the bottom of it.

NDCS has been asked to ask parents to stay on alert for any problems and feed back to their audiologist. Feel free to leave a comment on this page also to share your experiences. The more information they have about the problem, the quicker a solution can be found. Encouragingly, the feedback on the Naida hearing aids is still overwhelmingly positive and parents are still chosing to go for the Naida option.

Finally, an apology – a blog was published on this topic earlier in error. If you can still read it, please ignore and send me a whip for me to do mea culpas with.

NHS letter on Phonak Naida hearing aids

In response to a blog I did on Phonak Naida Hearing Aids, someone mentioned that their audiologist seemed to a bit clueless about the technological problems that are occuring in some of these hearing aids.

If you’re one of these people, then take this letter from the NHS to your audiologist. It’s an acknowledgement by the NHS that some problems are occuring and that such hearing aids need to be replaced. It should have gone out to all audiologists but it’s clearly not always getting through to everyone…

Now that I’m getting used to my new hearing aids, they do definitely seem to be better. I sometimes feel that I’m now hearing the kind of noises that only dogs could hear whenever there was a full moon…

Deaf and disabled children denied access to basic NHS care

Every Disabled Child Matters (EDCM) have launched an important new campaign today about disabled children’s access to health services.

We know that many professionals work their socks off to help disabled children. But EDCM’s report still makes for depressing reading, particular about the cavalier attitudes of some other professionals to the needs of children with complex health needs. In one example given, a disabled child was left to die and spoken of as if she wasn’t ever really alive at all.

Like other disabled children, deaf children spend a lot of their time at hospitals, particularly in audiology departments. It’s important that all health professionals are child-friendly and have the right levels of deaf awareness to be able to engage effectively with these children.

And a large number of children – around 40% – also have additional needs, of which many will have complex needs. It’s important that their rights to effective hearing aids and audiological equipment isn’t overlooked.

NDCS is supporting the campaign and joining the call for primary care trusts to improve the services they offer to disabled children.