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.

Action Plan on Hearing Loss

Liz Partridge, Senior Policy and Campaigns Officer

Liz Partridge, Senior Policy and Campaigns Officer

NHS England recently published their ‘Action Plan on Hearing Loss’. What is it and what do we think?

What is the Action Plan on Hearing Loss?

Well, in the words of NHS England ‘The purpose of the document is to encourage action and promote change across all public service sectors and at all levels on how children’s, young people’s, working age adults and older people’s hearing needs can best be met.’

Who is the Plan for?

All public bodies that are responsible for ensuring the needs of deaf children and adults are met, like health authorities, local authorities, and central Government.

Is it statutory guidance?

No, the key actions in the Plan do not have to be followed by law.

What do we think?

We welcome its focus on the need for deaf children to achieve age appropriate language, the commitment to tackling low educational attainment and the focus on mental health. The Plan also recognises the variation in quality in hearing loss services, which is good. However it doesn’t go on to explain in detail how to fix this problem. NHS England do acknowledge that the document ‘is not intended to act as a detailed implementation plan’ but this admission without any further explanation, leaves us wondering if there will ever be a more detailed implementation plan and who will be responsible for it?

How does it match-up to our Listen Up! campaign asks?

In short, it doesn’t. Our Listen Up! campaign calls for:

1) action to be taken to improve failing audiology services now
2) mandatory quality assessments to take place through a programme called Improving Quality In Physiological Services (IQIPS) and
3) all information about the quality of children’s audiology services to be published now, so that families know how good their audiology service is.

Unfortunately the Plan doesn’t specify how services should take action to meet even minimum quality standards. It mentions IQIPS only once in an appendix, suggesting it as a way to ensure quality but does not state its use should be mandatory. There is no call to ensure all information about the quality of children’s audiology services undergoing the IQIPS process is published.

What can you do now?

  • Take a look at the full plan to find out more.
  • Take action and email your local health commissioner to find out about the quality of children’s audiology services in your area.

We are continuing our dialogue with NHS England to ensure that all deaf children and young people receive good quality audiology services. Keep an eye out for our next Listen Up! campaign update.

 

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.

 

Disability Matters – e-learning to inform and inspire!

Vicki Kirwin Development Manager (Audiology & Health)

Vicki Kirwin Development Manager (Audiology & Health)

“Over 60% of Britons say they are not confident communicating with a child who is deaf”

(Disability Matters Launch Report, Feb 2015)

I recently attended the launch of the new Disability Matters e-learning resource with our CEO Susan Daniels. Disability Matters is a suite of online and group learning modules that aim to tackle the inequalities that disabled children and young people face in their daily lives. It was co-developed with disabled young people and parent carers and the practical tips delivered within the programme are based on real, lived experiences. Through words, pictures and signs, deaf and disabled children, young people and their families challenge learners to reflect on their own attitudes and beliefs about disability and explores the practical things people can do that could make a real difference to their health and wellbeing.

So far 27 modules are live with more to come. One of the first live modules is Deaf Communication Matters which was developed by myself and Lucy Read (NDCS Head of Youth Participation). It uses video of several of our former YAB members and material from My Life My Health campaign with them sharing some of the typical barriers they encounter and showing the learner simple steps to take and adjustments to make to overcome those barriers and enable successful interaction with them. The module takes about 20 minutes to complete.

The programme is designed to support organisations, their workers and volunteers across the health, education, social care, criminal justice, travel and leisure, community sectors, as well as friends and extended family, in developing the communication and problem-solving skills required to engage confidently with disabled children and young people.

All resources are FREE and are designed to be easy to use and done at the learners pace.

Have a look at the site, register and have a look through the many modules – there is bound to be something of interest and value to everyone – including communication, advocacy, safeguarding, confidence, relationships, bullying, inclusion, decision making etc. You could complete them all with one 20-40 minutes session a week for a year! But for ease of decision making the system will recommend a shorter list of modules based on their profession or sector selected when registering.

https://www.disabilitymatters.org.uk

MP speaks out about deafness!

Arthur Thomas Campaigns Officer

Arthur Thomas Campaigns Officer

Last night Alison Seabeck MP, a frequent supporter of NDCS, led a short debate on the educational attainment of deaf children and young people in the House of Commons.

In the debate, she spoke about her meeting with a member of the NDCS Young People’s Advisory Board, Renee, at party conference and discussed her own experiences as someone with a unilateral hearing loss as well as her support for the Plymouth Deaf Children’s Society.

Following a briefing from NDCS she also raised NDCS’s Listen Up! campaign to improve audiology services, emphasising the importance of quality audiology services she said ‘Good audiology services make a critical contribution to a deaf child’s success in life, as they are responsible for ensuring that a deaf child can use their remaining hearing to the fullest possible extent’

The Education Minister, Edward Timpson, referred to forthcoming changes to how Ofsted will inspect local authority services for children with special educational needs (SEN), stating that ‘Ofsted is now working up the details of the new arrangements’. This follows our campaign victory on this last month.

The Minister went on to reaffirm his commitment to making sure that the requirements of children with SEN are met and that Local Authorities ‘should prioritise vital front-line services for vulnerable children’

We’d like to say a big thank you to Alison for holding the debate and all the MPs who took part for their contributions. Short debates like this are a great way of raising awareness of deafness within Parliament but also of keeping government Ministers on their toes!

Listen Up! campaign update. Email your health commissioner now!

Liz Partridge, Campaigns Manager

Liz Partridge, Campaigns Manager

Email your health commissioner now and ask them to tell you what they are doing to ensure your child’s audiology service is good quality!

A couple of months ago we launched our Listen Up! campaign in response to an NHS report that revealed that one-third of children’s audiology services failed deaf children. We called on you to take action and email your MP to ask them what they were going to do to help ensure that all deaf children receive a good quality audiology service.

I would like to say a massive thank you to the many of you that took action. As a result of your action we secured a meeting with the Health Minister Dr Daniel Poulter and he has agreed to investigate further.

However our work is not done! It is important we continue to take action because we know that one-third of children’s audiology services failed deaf children and despite this the Government stopped inspecting these services. This means we have a very little idea of how children’s audiology services are doing now, leaving many families in the dark about how good or bad their child’s audiology service is.

Listen Up! campaign logo

So we need to keep the momentum going – please take action now and email your local health commissioner to find out more about the quality of your child’s audiology service.

You can also find out more about the campaign and don’t forget you can join our Campaigns Network to be kept regularly up-to-date!

Further updates will be coming your way soon so please keep an eye out and continue to take action to ensure all deaf children and young people receive a good quality audiology service.

Thank you.