Deafness and Hearing Loss Hustings: why doing nothing is not an option

Action on Hearing Loss Hustings panel

I find it really sad that so many of us feel disconnected, mistrustful and disenchanted with our politicians at the moment. People feel that they are too professional, too aloof and do not represent the society we live in. This is especially the case for many people in the deaf and hard of hearing community, who feel so frustrated and disempowered by the political establishment. Some even wonder why they bother to vote at all.

I recently attended Action on Hearing Loss’s Deafness and Hearing Loss Hustings debate at Westminster. To me this represented a great opportunity for deaf and hard of hearing people to redress the balance by questioning MPs about the issues we really care about in the run-up to the general election and to try and get some answers about the many barriers and inequality we face in our society.

This was a free event and there were about two hundred people in the audience, representing the full spectrum of deaf and hard of hearing people, including BSL users, cochlear implant and hearing aid users, all with different communication needs. It was made fully accessible to all through the use of lipspeakers, BSL interpreters and speech-to-text reporting, as well as a hearing loop.

The MPs on the panel included Mark Harper, the Conservative Minister of State for Disabled People, Lord German, the former Deputy First Minister for Wales and Co-Chair of the Liberal Democrat Parliamentary Committee for Work and Pensions and Kate Green, the Labour Shadow Minister for Disabled People.

Denis Campbell, who writes for the Guardian and the Observer, chaired the event. He is a hearing aid user himself and understands many of the issues and barriers faced by hard of hearing people. At the beginning, Kate Green talked about how things are getting tougher for deaf people as a result of cuts to public services and welfare reforms in a climate of hostility and suspicion being created against disabled people. Mark Harper, on the other hand, spoke of how he wanted to give disabled people greater access to employment in a more inclusive society. Lord German spoke of dignity, consideration, understanding, self-esteem and inclusion.

The questions asked by audience members were very topical and represented some of the key issues that deaf and hard of hearing people are particularly concerned about at the moment, such as the Access to Work 30-hour rule review, the problems we face accessing the NHS due to communication barriers and lack of deaf awareness on the part of many NHS staff. There were also questions about cuts to hearing aid provision by CCGs around the country and changes to welfare reforms, which are having a particularly detrimental effect on deaf people.

There were also questions about the lack of subtitling provision at the cinema, on video-on-demand services and the need to improve the quality of subtitling on TV programmes. Apart from the Access to Work problems these are all issues that I feel very passionate about and experience on a regular basis, particularly the communication difficulties in accessing doctors and hospitals, and the lack of subtitling provision and varying quality depending on which provider and platform you are using.

Mark Harper said that they were in the process of reviewing the Access to Work provisions and they had to balance the costs of providing the interpreting service with the needs of Deaf workers. Kate Harper said that she was disappointed because the needs of Deaf people in the workplace were not being met. She talked about using a personalised, holistic approach when consider the communication needs of individual Deaf workers, rather than a “one-size fits all” rule.

A cochlear implant user in the audience then asked a very topical question about why the fundamental principle of providing free hearing aids to those who need them was being challenged by NHS Trusts in reducing provision to people with mild or moderate hearing loss (following the recent decision by the CCG in North Staffordshire). She said she wanted a guarantee from the Government Minister that no more cuts to hearing aid provision would be made.

Kate Green explained that Andy Burnham, the Labour Shadow Health Minister, had said that this was “unacceptable”. She said that we need to deal with hearing loss early on and that people needed support to prevent further problems later on. She said that poor health outcomes were related to barriers to communication and access to treatment.

I know from my own personal experience how difficult it is to access NHS healthcare when you cannot communicate with your doctor or healthcare professional due to your hearing loss and you cannot understand what they are telling you about your own health or treatment. Lack of deaf awareness and understanding how to communicate with deaf people is a massive problem in the NHS.

In fact, according to the “Sick of it” report published by the charity SignHealth last year, there was a shocking inequality in the treatment of Deaf people compared to the population as a whole. They said that some Deaf people may be at risk of reduced life expectancy, as potentially life-threatening health conditions are being missed and poor treatment offered when a diagnosis is made. According to them lack of information, poor communication and unnecessary difficulties were costing the NHS £30m a year.

There is clearly a need for deaf awareness training, more BSL interpreters to be available to Deaf people, better communication, signposting and less ignorance among NHS staff. Their findings influenced the NHS’s forthcoming Information Standard report, which Mark Harper explained would be published in the spring, and would provide guidance on the reasonable adjustments outlined in the Equality Act 2010 and would make it better. Kate Harper said that we needed an Enforcement Act to make it work because public bodies like the NHS thought they were now “off the hook”.

Another question was whether the panellists would provide regulation to compel high quality subtitles on TV, on-demand services and the cinema. While Mark Harper said that Ofcom have a code and they will prepare a report in April, Kate Green mentioned the possibility of looking at EU legislation, but the UK government was resistant to this. Lord Green said that we need legislation to make it work. The Chair Dennis Campbell then put the motion to the audience of whether we thought we need legislation to make subtitling work better. In response, the audience gave an overwhelming show of hands in support of legislation. This shows how important improving subtitling provision is to deaf and hard of hearing people.

At the end the panellists each made closing statements on their views about the two-hour debate. Lord German talked about reducing the stigma of disability, getting more people back into work and understanding how universal health and social service policies are applied locally. Mark Harper said that it he had found it useful and he and had understood that the “reasonable adjustments” stated in the Equalities Act were not always working in practice. Kate Green, on the other hand, said that the government was increasingly making constraints on people with hearing loss, who needed to start using the language of their rights to address those constraints. She also said that she had gained useful insights about what really concerns people with hearing loss and that some of the questions weren’t what she was expecting beforehand.

Even though some people think that politicians often don’t give us the answers we want from them the audience asked some very important questions, which I thought were representative of the issues affecting deaf and hard of hearing people today. Highlighting those important issues raises awareness in itself, but I believe that this debate was a success and I found it really insightful and interesting.

I hope that there will be more debates like this in the future. I think that engaging with politicians and other decision-makers is essential in the run-up to the general election if we want to campaign for change and achieve better equality and inclusion in our society. Doing nothing is not an option.

Action on Hearing Loss Youtube video of the event: