Elin’s Story – Glue ear and me

Elin Wyn, Policy and Campaigns Officer Wales

Elin Wyn, Policy and Campaigns Officer Wales

I had glue ear when I was about three or four years old. I don’t remember much about it, other than being told I had to eat copious amounts of ice cream after an operation to remove my tonsils and adenoids. I never imagined that fifty years later I would experience glue ear again.

It started in January after a particularly stubborn cold that just would not go away. I noticed that I had to turn the volume on the television louder and that I was missing bits of conversation in the office. As the weeks went on my hearing gradually got worse. Meetings at work were increasingly difficult – not only could I not hear everything that was said but because I could hear my own voice very loudly in my head I spoke more quietly than usual. Even when I did try to take part nobody could hear me! My social life almost disappeared. I went to the theatre one evening and despite sitting in the fourth row from the front still couldn’t hear everything. When I met friends in a pub or restaurant it was practically impossible for me to follow conversations in the noisy environment. So the past few months I’ve been staying at home bingeing on television box-sets!

Being so isolated made me think more about the children that I support in my work as a Policy and Campaigns Officer for NDCS Cymru.  80% of children will experience temporary deafness because of glue ear before they are 10 years old. Some children will have recurring episodes that may last for several months or years. Not being able to hear in class or play and talk to your friends can have a devastating impact on a child’s language and social development. Sadly many education and healthcare professionals are not aware of the signs that a child may be experiencing temporary deafness. A child may become withdrawn, might not respond to questions or be isolated in social groups. When I had my glue ear as an adult I was able to understand what was happening and tell people that I’d lost my hearing. A young child might not understand or have the confidence to say that they had problems hearing. That is why it is so important that we ensure that deaf awareness is a high priority for all schools.

As for me, after the GP prescribed several different nasal sprays and drops, four months later my hearing is more or less restored and I have managed to avoid the grommets operation suggested by the ENT consultant. And my neighbours are happier – the television volume is back down to normal!

7 good things about reform of additional learning needs in Wales

Elin Wyn, Policy and Campaigns Officer Wales

Elin Wyn, Policy and Campaigns Officer Wales

The Welsh Government recently published their plans to introduce a new law to reform the support children and young people get if they have additional learning needs (ALN).

The new law will replace the laws we have now around statements of special educational needs (SEN) and support for young people with learning difficulties or disabilities in post-16 education and training.

NDCS Cymru broadly welcomes the plans – but there is still a lot of work to be done on the nitty gritty of how the new system will work.

Here are seven things we like about ALN Reform in Wales.

1)   Using a new term – additional learning needs.

We think this is better than “special educational needs” because it’s a more accurate reflection of the challenges face by deaf children and young people.

2)   Children and young people from 0-25 will be included in the new system

We hope that this means that babies and toddlers who are diagnosed deaf will get support at a very early stage. They will then have a better chance of developing speech and language in that crucial pre-school period.  Including young people up to 25 is a great idea too, as it will hopefully improve the transition between school and college.

3)   Individual Development Plans (IDPs).

These IDPs will replace statements of SEN and Individual Education Plans (IEP) under School Action and School Action Plus for all children and young people with additional learning needs from birth to 25. Having one plan that can be updated and reviewed should improve transition between pre-school and nursery, nursery and primary, primary and secondary and onto post 16 education or training.

4)   Person centred planning

Children, young people and parents must be involved in planning an IDP and their views must be taken into account. This is great news as it will make sure that the new process is centred on the needs of the child.

5)   Everyone has a right of appeal

Sometimes things go wrong – maybe the support a child needs is not provided, or it’s decided a child doesn’t need support. Under the new proposals everyone who has an IDP can appeal to a tribunal – though they will have to try to resolve issues locally first. Also if you think your child should have an IDP and you are refused you will be able to appeal. Young people in post-16 education and training will also have the right to appeal – which is a big step forward.

6)   Sharing information

Under the new plans local authorities, health boards and further education colleges will have a duty to co-operate and share information about how they assess, plan and deliver the support that a child or young person needs in the IDP. This is a really positive step forward for families who get frustrated with the lack of co-ordination between different agencies

7)   Additional Learning Needs Co-ordinators (ALNCOs)

The new system will place a duty on mainstream schools to have a designated person responsible for co-ordinating support and provision for pupils with additional needs. That person will also have to be either qualified or experienced or both. We hope that these ALNCOs will also have to have training on low incidence ALN like deafness.

Although we welcome these positive steps there is still a lot more that can be done to make sure deaf children and young people have the support they need in nurseries, schools and colleges. We will be working with the Welsh Government over the next few months on the new Code of Practice that will be introduced alongside the new law. We’re not exactly sure yet when the new law will be passed – hopefully before the next Assembly Election in 2016. But you can rest assured; NDCS Cymru will be working hard to make sure that the needs of deaf children are met in this new system.

You can read the full response that we sent to the Welsh Government here. Please sign up to support our work by joining our Campaigns Network.


10 things GPs in Wales should do for deaf patients


Elin Wyn, Policy and Campaigns Officer for Wales

Did you know that deaf people in Wales have certain rights when they go to see their doctor?

The NHS in Wales has published a set of Standards on Accessible Communication and Information for People with Sensory Loss. These standards tell GPs and hospitals what they should be doing to make sure deaf people hear and understand everything they need to know about their healthcare needs. This should make it easier for deaf young people to become more independent when they visit the GP. And to make life easier for you here are 10 things GPs in Wales SHOULD be doing to help deaf patients:

1)   Asking patients what communication needs they have.

2)   Setting up a flagging system to record that information on the patient’s paper or computer record.

3)   Checking that the environment encourages effective communication – e.g. checking lighting and background noise

4)   If a patient is referred from the GP to a hospital the GP should also transfer information about their communication needs.

5)   Patients should be able to make appointments in different ways e.g. by email, texting, textphones and websites.

6)   The GP reception and consulting rooms should be fitted with a hearing loop and staff should know how to check they are working.

7)   Reception staff should have arrangements in place to make sure deaf people don’t miss their appointment.

8)   Every patient who needs communication support should have it – and it’s the GP practice that should arrange this and that pays for this support.

9)   All staff should be trained in how to communicate effectively with deaf people

10)   The GP practice should promote the different forms of communication that are available to deaf patients.

These standards are a part of your rights as a deaf young person in Wales. If your GP doesn’t do these things you can complain to the Local Health Board that your GP practice is not sticking to the Standards on Accessible Communication.

For advice for deaf young people on visiting the GP independently have a look at our “My life my health” resources.