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.

Join Scotland’s first British Sign Language National Advisory Group

Katie Rafferty, Policy and Campaigns Officer Scotland

Katie Rafferty, Policy and Campaigns Officer Scotland

After years of campaigning, the passage of the British Sign Language (Scotland) Act (2015) in September 2015 was a landmark moment in Deaf history in Scotland. As a result of the Act the Scottish Government and public bodies like the NHS are now required to develop British Sign Language (BSL) plans which outline how they will promote and raise awareness of the language.

The Act also requires a National Advisory Group (NAG) to be set up to represent the views of people with BSL as their first or preferred language. The NAG will have the important job of advising the Scottish Government and public bodies on what should be in their plans.

Here’s the top 6 things to know:

  1. Two spaces are reserved on the NAG for families of deaf child who have BSL as their first or preferred language, one of these spaces is for a hearing parent or carer;
  1. Two spaces are also reserved on the NAG for deaf young people aged 10 to 17 (or up to 20 if they have experience of care). However young people will follow a separate application process because a Youth NAG is also going to be set up. Information about this will launch in January;
  1. You do not need to have formal experience of advisory groups to get involved in the NAG, your life experience and ability to represent the views of others in similar circumstances to your own is what counts;
  1. You can submit your application in BSL or English. NDCS (or any other Deaf Sector Partnership organisation) can help you with your application, get in touch with Anne-marie@ndcs.org.uk with any questions;
  1. You can find the application and information pack on the Deaf Sector Partnership website – with full BSL versions. There is also lots of information on Facebook, search for the ‘British Sign Language (Scotland) Act (2015)’ group to join the discussion;
  1. The deadline for applications to the main NAG is 28 January 2016.

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.

Audiology services for deaf children – a review of the past five years

NDCS - Ian Noon, Head of Policy and Research

Ian Noon, Head of Policy and Research

Continuing our series of blogs on the upcoming election, this blog takes a look at the government’s record on health and audiology services in England.

What’s changed?

One of the big changes over the past five years has been the Health and Social Care Act 2012. It’s fair to say that this got a rocky ride through Parliament, with some seeing it as another top-down reorganisation of the NHS and others seeing it as necessary to make the NHS more streamlined, less bureaucratic and patient-centred.

In terms of structures, deaf children and their families may not have noticed many changes in terms of where audiology services sit and who does what. But behind the scenes there have been lots of changes in funding and organisational arrangements, leading to uncertainty and confusion over how the changes impact on audiology services.

There have also been changes to how audiology services are checked to ensure that they’re providing a good service. The existing quality assurance programme, which looked at the patient journey from screening of babies for a hearing loss to diagnosis and audiological support and other support, has been scrapped. For audiology services, this has been replaced by an accreditation scheme called Improving Quality in Physiological diagnostic Services (IQIPs). Unfortunately, IQIPs isn’t mandatory and there is a lack of transparency over how has applied for accreditation. This means that parents of deaf children now have less information about the quality of local audiology services.

Are deaf children getting the support they need?

This matters because there are increasing concerns over whether those audiology services are doing everything they should to ensure deaf children get the best possible support. Before the old quality assurance programme was scrapped, it was found that 1 in 3 audiology services were failing to meet basic government standards. We have no real idea whether that has got any better – or worse.

On top of that, NDCS is increasingly being contacted by parents saying that they are noticing cutbacks in audiology, some of which are set out in the NDCS Listen Up! campaign report. These range from having to wait long times for ear moulds or delays in diagnosis, to being denied funding for specialist auditory implants. Even small things, like offering coloured earmoulds are being cutback, even though this can really encourage deaf children to wear their hearing aids and make the most of their hearing.

Deaf awareness

Deaf young people also tell us that deaf awareness in health settings also remains an ongoing issue, as set out in the NDCS My life, My Health report. The good news is that NHS England has started to wrestle with this issue and a new accessible information standard, is expected to be launched next year. As part of this, all NHS settings, including GPs, will be expected to do more to meet the communication needs of deaf people.

As with education, trying to do justice to five years of health policy in a single blog is a challenge and the above does not attempt to cover everything or even to touch on wider changes that impact on all children. Again though, we hope it provides some food for thought though. Let us know what you think about our summary evaluation by leaving a comment below.

Listen Up! We want to share your videos with NHS England

Liz Partridge, Senior Policy and Campaigns Officer

Liz Partridge, Senior Policy and Campaigns Officer

We’re meeting with NHS England on the 5th March to talk about our Listen Up! campaign and we need your help!

If you’re a parent of a deaf child or have used audiology services yourself, we would like you to produce a short video telling NHS England why you think good quality audiology services are so important for deaf children. We’ll then share your videos in our meeting with NHS England.

Having your voice at the meeting will really help to keep the pressure on NHS England to ensure that all children’s audiology services are good quality.

Please send your video to campaigns@ndcs.org.uk by the 4th March next week. We look forward to hearing from you.

You could also share your videos on Twitter, making sure to @NDCS_UK and use the ‪#‎AudiologyStory‬

We thought we’d have a go too, check out our Vine!

Watch this space for updates following our meeting next week.