Grommet surgery not under threat

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Vicki Kirwin, Development Manager (Audiology & Health)

Recent headlines across the media have suggested that the NHS plan to cut some “ineffective” routine surgeries to save money. One of the treatments supposedly under threat is grommet surgery for children with glue ear.

We are aware that some of our members have raised concerns about the impact of these cuts on deaf children. However, we don’t feel that the headlines are a true reflection of the NHS proposals. We have read the draft consultation proposed by the NHS and it is clear that grommet surgery will still be available to all children who meet the current guidelines. It seems that the proposed changes are a way of making health professionals adhere more closely to these guidelines, rather than an attempt to stop the procedure altogether.

The selection criteria outlined in the proposal are:

  • All children must have had specialist audiology and ENT assessment.
  • Persistent bilateral otitis media with effusion (glue ear) over a period of 3 months.
  • Hearing level in the better ear of 25-30dbHL or worse averaged at 0.5, 1, 2, & 4 kHz
  • Exceptionally, healthcare professionals should consider grommets in children with persistent glue ear in both ears with a hearing loss less than 25- 30dbHL, where the impact of the hearing loss on a child’s developmental, social or educational status is judged to be significant.
  • The guidance is different for children with Down’s Syndrome and Cleft Palate, these children may be offered grommets after a specialist MDT assessment in line with NICE guidance.
  • It is also good practice to ensure glue ear has not resolved once a date of surgery has been agreed, with tympanometry as a minimum.

We feel that these guidelines are appropriate and we are not currently concerned that there will be a negative impact on the selection process. We don’t expect that it will be harder for families to access grommet surgery for their child; if it’s clinically necessary and their choice of intervention. If families have had issues getting the right treatment for their child we do, however, urge them to contact our Helpline.

The NHS consultation will be published soon and we will be responding to the final version. We will also closely monitor how the proposals are implemented locally. If anyone is concerned about the availability of grommet surgery in their local area please contact our Helpline or the Campaigns team at NDCS.Campaigns@ndcs.org.uk.

Shouldn’t all young deaf children and their families have the right to a Radio Aid?

Emma

Emma Fraser- Teacher of the Deaf

Everyday life can be busy and noisy with family gatherings, trips out to playgrounds and activity centres and frequent journeys in the car and the buggy. Having two children myself I know how loud we all can be particularly when my six siblings and their children come round. In fact recent research indicates that young children can spend up to 25% of their day in noisy environments. So knowing what we know about how important it is for young children to hear spoken language in order to develop good communication and language and how babies have to learn how to be good listeners, why can’t all deaf pre-school children be considered for a radio aid at the same time as they are fitted for a hearing aid? 

We think every family should have the right to try a radio aid, from an early age, so they can see if it would work well for them. Our research shows that it can have big benefits. If you would like to try one, you can talk to your audiologist and Teacher of the Deaf about radio aids. As soon as your child has hearing aids or a cochlear implant, discuss options with your Teacher of the Deaf about trying out a radio aid at home. It may take some getting used to and you don’t need to use it all the time, but when you think about the times your child is in a noisy place or behind you in the car, it will be then that your child could really benefit from hearing your voice clearly.

So here are some things you may want to consider when using a radio aid with a baby or toddler.

  • Think about the best time to use the radio aid for you and your child, it may be in the car, when you are sharing a book with a sibling, or playing with your child at toddler group. Take a look at this short video to see how a family used a radio aid to help communication.
  • All the family can use the radio aid, so pass it around when another family member is interacting with your child
  • Radio aids use up battery power so you will need to change the batteries in your child’s hearing aids more frequently
  • Place the microphone carefully. About 15cm from your mouth is best and avoid wearing anything that will knock against it as the sound will travel straight into your child’s ears.
  • Don’t forget to use the mute button, there are some conversations your child doesn’t need to hear.

Unfortunately, radio aids are not always available for use in the home or for pre-school deaf children. We’re campaigning for them to be more widely available – local authorities will need to ensure that services have the resources to fund, maintain and monitor the equipment.

Remember the best communication happens in a quiet environment, when you are close to you child, they can see your face and you are sharing experiences, but when this isn’t possible consider trying a radio aid. If you’d like more information about radio aids, take a look at our website.

 

General election 2017: Uninspected audiology services

Beccy Forrow Policy and Campaigns Officer

Beccy Forrow, Policy and Campaigns Adviser

Would you send your child to a school that hadn’t been inspected by Ofsted? Would you ride in a car that didn’t conform to industry safety standards? Would you eat in a restaurant that refused to take part in food hygiene inspections? All questions I’d answer no to.

But this is what is being allowed to happen with children’s audiology services in England. Only 15% of services have been inspected and achieved a high enough standard to become ‘accredited’. This leaves the majority of services uninspected – with deaf children, young people and their families having no idea whether they are attending a great service or one that is poor quality and unsafe.

Considering that an NHS report in 2014 found that one third of audiology services were failing to meet critical NHS quality standards, with no incentive to improve, it’s unlikely that many will now be providing a better service. This matters because hearing is critical to a child’s development of language and learning. Early diagnosis and support reduces the risk of delays in language, educational, social and emotional development. But this support needs to be consistently of good quality.

Earlier this year we created an audiology map so that parents could check if their local service had reached a high enough standard to be accredited. However, of 134 services, 40 have so far refused to take part in the inspection scheme at all. Many others have registered for the scheme but not moved closer to an inspection visit over the course of the last few years.

We’re calling on the next Government to make it compulsory for all children’s audiology services in England to take part in the inspections so that parents can be confident that they are fit for purpose. As the inspections cost money and can be time consuming to prepare for, it’s vital that the Government levels the playing field by making the inspections mandatory for all services. Audiology services for deaf children won’t get better on their own.

If any general election candidates come to your door, be sure to ask them about the quality of children’s audiology services. We’ve got some other questions you might like to ask them on our election web page.

Getting it right from the start

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Today, we’re launching a new campaign in England, called Right from the Start.

NDCS - Ian Noon, Head of Policy and Research

Ian Noon, Head of Policy and Research

The campaign is celebrating 10 years of newborn hearing screening and how this simple and painless test has literally transformed the lives of thousands of deaf babies.

But whilst screening has made a big difference, there is still much that needs to be done. Once diagnosed as deaf, children and their families need high quality support to ensure they can develop the language and communication skills that are the foundations for success in later life.

Unfortunately, it’s clear that this support is not being provided consistently across the country. We know there’s a massive attainment gap in the early years foundation stage, where children are assessed among a range of early learning goals. We also regularly hear from parents that vital support, such as audiologists, Teachers of the Deaf, support with communication and so on is not being provided when it can have the most impact.

We’re calling on the Government, local authorities and health bodies to work together and make a commitment to ensure high quality support is in place as soon as a child is diagnosed as deaf. Our campaign report explains how the benefits of hearing screening at birth are being lost and what action is needed to ensure deaf children get the right support, right from the start.

Join us in getting it right from the start. We’re asking our campaigners to email our report to their MP and to ask them to take action.

There’s lot of other ways you can support the campaign. Find out more at www.ndcs.org.uk/rightfromthestart.

Have your say on audiology services in Leeds!

Arthur Thomas Campaigns Officer

Arthur Thomas Policy & Campaigns Officer

NDCS are supporting a review of Leeds Audiology Services. If you live in the Leeds then make sure your voice is heard by taking part in a short survey below.

By completing the survey you can help Leeds Audiology Service understand how best to meet the needs of deaf children across Leeds.

Please follow the link below to contribute to the review and have your say:

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We will keep you updated about the progress of the review.

If you have any questions or would like any more information, please contact Carla Rose-Hardman at: Carla.Rose-Hardman@ndcs.org.uk

Liam’s Story: Volunteering with the NDCS Youth Advisory Board

Youth Advisory Board (YAB) volunteer

Liam, Youth Advisory Board (YAB) volunteer

It’s been over a year now since I first joined NDCS’ Youth Advisory Board (YAB) as a volunteer. The role of the YAB is to work closely with the NDCS and help them with their campaigns and projects. After finding out through NDCS’ online website for young people, The Buzz, I decided to apply…

The reason I chose to join the YAB was because I have always liked to voice my opinion on issues that matter to me. My deafness is one of the main things I am passionate about, and being able to share my thoughts and opinions with other like-minded, deaf young people from across the UK seemed like a great opportunity to get involved in.

As well as that, I’m a huge fan of networking and meeting new people. I’ve been to three YAB meetings since March 2014 and I’ve met some great deaf role models, made new contacts and friends for life in my fellow YAB members.

Lastly, I always wanted to learn British Sign Language. Where I live, there isn’t much opportunity to learn, but one year on, I’m proud to say that I am learning more BSL every day. Over one year on from joining the YAB, all of us have achieved some great things.

In terms of campaigns, one YAB member, Zanna, recently took legal action against the Government for not consulting deaf young people about the proposed changes to the Disabled Students’ Allowance, and forced them to delay their plans to cut back support for disabled students (read more about this story here)! Other members of the YAB went to numerous party conferences to meet MPs and ask key questions concerning deaf young people. In particular, the Board contacted the Department for Education to tell them our thoughts on teaching assistants (TAs). We have also contacted the NHS and health commissioners about local audiology services. Overall, the YAB’s campaigning work has been quite impressive!

But that’s not all. We’ve helped the NDCS with designing leaflets about the Local Offer, vision statements, as well as sharing our thoughts on resources that the NDCS creates.

As it’s Volunteers’ Week, now is the perfect time to recommend getting involved in voluntary opportunities like the Youth Advisory Board. Opportunities like these are so important because there’s endless benefits to both you and the organisation you are helping. By seizing opportunities like these, you have the chance to make personal achievements (make new friends, develop new skills and so on), as well as make a key difference to an organisation through giving up your time, sharing your thoughts and helping them with their work.

For deaf young people, I cannot recommend the Youth Advisory Board enough, and for everyone, I thoroughly recommend exploring every voluntary opportunity there is available to you – the possibilities and benefits are endless!

The NHS makes me feel like a drain on resources

Danielle Davies, Deaf Social Work Student

Danielle Davies, Deaf Social Work Student

I am 20 years old, a University student studying for my degree in Social Work. I am severely hard of hearing and have worn two hearing aids since birth. I am not blind to the harsh cuts the NHS has faced over the past few years and I understand we have been in a financial crisis under the previous coalition government. However, I have never in the past 20 years seen these cuts affect the service that I receive from the NHS, especially in audiology, the department I receive my hearing aid support from.

Not until now. I want to tell you about my experience a couple of weeks ago.

A few weeks ago, I made an appointment at my local audiology department at the hospital in my local town. This appointment was to have new moulds fitted for my ‘in the ear’ hearing aids. I went into the consultation room and I explained that I needed some new hearing aid moulds due to the current mould rubbing me severely. The moulds had also become discoloured and not very presentable. No hearing aid user likes to wear yellow looking moulds that look mouldy and unpleasant. It is natural that the moulds discolour and I usually stick it out long enough in till they are that bad they need changing.

The audiologist looked at the fit of the aids in my ear and the hearing aid itself. He stated that there was no need for new ones to be made as they fitted well and I had already had new moulds made a year ago. I explained that 6 months to a year seemed usual to come in for new hearing aid moulds. The audiologist stated that now I am in adult services replacements are every 2 years and not as regularly as they would have been in children’s services.

I did not know how else to respond to this but to sit in silence. I had never been told that was now eligible for new moulds every 2 years and not yearly. I was still confused as I had explained to the audiologist that the moulds had discoloured and rubbed me, regardless of how long ago I had new ones. The audiologist stated that on this one occasion he would fit new moulds.

After that the audiologist asked ‘do you know how much hearing aids moulds cost?’ to which I replied I didn’t know. The audiologist stated ‘they cost between £15 to £20 for the moulds and this is very expensive, the money comes out of adult services budgets’. What was going through my head was ‘are you trying to make me feel bad for coming to my appointment and asking for new moulds because my current ones have left me in discomfort’? I was made to feel like a drain on NHS resources and that I was using money unnecessarily, however this was not the case.

Following the moulds being made, the audiologist explained that I would be telephoned to come in and have an appointment to have them fitted. However, as I have fitted my own hearing aids for the past few years I asked if the moulds could be posted instead. The audiologist stated that we do not post them as ‘that costs money and it isn’t cheap for postage’. I pointed out that for years now I have had them sent in the post, but agreed I could come in and have them fitted if they weren’t going to post them. The audiologist stated we only post them to our university students, as I was a student living away, the audiologist agreed to post them on this occasion.

Again I felt like I had to justify myself to the audiologist.

It was also clear that my records weren’t read and my hearing loss understood, because when the moulds were being made and left to harden in my ear, the audiologist started to talk to me. For people who don’t know, to make new moulds the hearing aids have to be taken out for a few minutes. You wait patiently until the solution is hardened and ready to be taken out of the ear and you put your hearing aids back in.

As a professional in audiology I would expect the audiologist to have read my records and check my level of hearing before he tried to communicate with me verbally when I did not have my hearing aids in. I had no idea what was said but nodded and pretended I could hear him – I felt devalued.

I was born with a hearing loss due to sensorineural nerve damage but I have never experienced this feeling in the 20 years I have been using the services. I was not advocated and was alone on this visit. The reason I wanted to write my story was because I want people to understand that you should never feel like you are a burden, scrounger or drain on the NHS.

I will be qualified as a social worker in 12 months and will be paying taxes in which will help fund care that I need. I feel that no one who is hard of hearing or deaf should be spoken to about budgets, cuts and costs on their appointments. I walked away from that appointment wanting to use private services. I want to be proud of using NHS services – I have received extraordinary support for many years from some great audiologists and in writing this I do not want to undermine their amazing work and efforts.

Finally, I completely understand why postage services are being cut and why moulds need to be changed every 2 years and not more regularly. However, it is important that every deaf and hard of hearing patient has these changes explained. I walked out of that appointment feeling undeserving of new hearing aid moulds, I felt that I was using NHS budgets unnecessarily and I did not feel proud to be deaf.

It wasn’t in till I got home and explained this to my mother and older sister, who were appalled at my experience, that it made me want to make other people feel empowered. I want all audiologists to be approachable and provide advice in a manner of professionalism, to understand their patients hearing and to never let them walk out feeling devalued.

Please take a message from this…be proud of who you are and your disability, tell your story, because just writing this made me feel amazing to have spoken out.