Hearing and Learning Disabilities Special Interest Group

Meeting in Leeds School of Healthcare 7 th April 2010

Attendees Siobhan Brennan, Tricia Simon, Jacqui Hughes-Cairns, Denny Fransman, Kara Kerr, Jackie Jones, Trudy Reading, Gabrielle Mason, Rachel Robinson, Christina Black, Gail Longman, Rosita Hamilton, Helen Brough, Fiona Egerton, Jeanette Brammer, Adeel Shahid, Angela Mack, Anthea Cox, Claire Spence, Jane Richardson, Jennifer Sharkey, Kath Lewis, Linda Whelan, Martin Anderson, Ruth Brooke, Sarah Hodgson, Sarah Oakley, Stephen Burton, Tony Gunnell, Zara Jay, Stacey Atkinson, Maureen Richardson, Sandra Mabbett,

Apologies Chris Wood, Carol Elgy, Chris Corkish, Andrew Forbes, Mary Bickford-Smith, Jo Brooks, Mark Sleigh, Hazel Parry, Jen Gilham,

Introduction and Welcome by Siobhan Brennan

This meeting was focusing on Desensitisation and some of the difficulties with reluctant hearing aid users. Some additional information may be found on the website www.HALD.org.uk, and when the speaker s have forwarded me their presentations I will send them out to everyone as email attachments as there have previously been some problems with uploading +/or accessing them from the website.

Audiology Service Provision for Adults with Leaning Disabilities Living in Residential Care Helen Brough, Clinical Scientist Helen reminded us that it is approximately 0.4% of the general young adult population who have a significant permanent hearing problem ~ which equates to about 40 people : 10,000 population. But there are at least (and this is likely to be a gross underestimation) 30% of young adults with learning disabilities who also have a significant permanent hearing problem. As this figure is likely to be much higher we could be looking at as many as 30-60 : 10,000.

In a lot of areas there is a scheme called DES – Direct Enhanced Service, for people with learning disabilities, this is where GP’s are given extra funding for annual health checks on adults with learning disabilities. This is actually a 27page document, the hearing part of which is minimal as outlined below and there is no provision for any hearing screening. The hearing part of which is the Cardiff Health Check, consisting of: - Otoscopy – to check for wax only (*) - Does the carer have any concerns regarding the hearing - Does the person wear a hearing aid - Does the person see an audiologist (*) Howell 1976 (study of day care services by GP’s) showed that approximately 70% of people in day care services have problems with impacted wax.

Helen highlighted IASSID (International Association for the Scientific Study of Intellectual Disorders. We may be able to get some more information from them.

Discussion It was brought to our attention by some staff form Leeds School of Healthcare that there are trained Learning Disability Nurses who undergo 3yrs specialist training. There could maybe be better links between Audiology Departments and Learning Disability Nurses. Denny also reinforced the benefits of working with LDN’s and community nurses to both support the clients and as a good link with residential care.

Angela Mack brought up the on line training course for Assistant Audiology Practitioners, E- learning for health, as some of the modules would be helpful for care assistants as well. And it is free!! http://www.e-lfh.org.uk/projects/audiology/get_involved.html

Hearing aids and mould options for the reluctant wearer. Tony Gunnell – Starkey laboratories. Tony confirmed what Helen had said in that around 40% (possibly more) adults with learning disabilities also have a significant hearing loss. This is often complicated and compounded by other sensory impairments. Due to the difficulties in testing this group of people, the detection rate is lower than in the general population. There is also a high incidence of physical /structural ear abnormality as well.

Verification is helpful for all fittings and speech mapping has been shown to be beneficial for carers in particular of this group of people. Impression taking can be extremely challenging with this some people in this group. Feedback can often be a problem, for various reasons, Starkey have an aid which has a self learning feedback management system, which will adjust to to users parameters in 2weeks with consistent use. Also they now have a CIC with 71dB gain.

The latest BTE’s have a touch sensitive casing for the volume and programs, ie: like iPod / iPhone technology. This also means they are more water resistant as there are no openings in the casing. Often a carer or support worker needs to be bale to operate or check the settings on the aid, remote controls can be used and now also any mobile phone as long as the keys are able to make a beep, any phone could be linked to an aid.

Tony reminded us about the difficulties of Cognition in Noise. It can take up to 15minutes to recover cognitive ability after being in a noisy environment for people with normal hearing. What happens if we add a significant hearing loss to that or impaired cognitive ability ……?

Discussion The question was asked – Should there be a targeted prescription criteria for the Special Needs population? Response – It is clear that research id definitely needed, but peoples’ difficulties vary so much there cannot be a one size fits all approach. All cases are individual, certainly extra considerations need to be given and the importance of REMs (real Ear Measurements) in non-standard ears is paramount. REMS are important in all fittings as who exactly fits the ‘average’ criteria.

People who suffers from ASD (Autistic Spectrum Disorder) have a higher incidence of hypersensitivity to sound / hyperacusis. Comfort control settings should be considered carefully.

Clinical Psychology Approach to Desensitisation Zara Jay, Clinical Psychologist, Nuffield Hospital Trust. For Desensitisation to be effective, Zara reported that relaxation is a key issue. There has to be good preparation for the sessions, rehearsing of what will happen and what is to be expected by and from the individuals concerned and lots of positive communication. The person also needs to be able to feel in control, ie: have a start / stop button, an action or a phrase to be able to stop things if they begin to feel uncomfortable and to be able to start things again when they feel ready. Discussion It was raised by the audience that it can be very difficult to access psychological services for reluctant wearers of hearing aids. Zara suggested the referrals could be made more easily by addressing the ‘fear’ or phobia’ aspects associated with using the hearing aid.

Derby Desensitisation Experience Denny Fransman We must remember we are only talking about an adult population in this context, again, following on from what Zara had previously said about the person having control, Denny advises that if the person is unable to remove the aid for themselves, it probably should not be fitted.

We should also not lose sight of the objectives for amplification in each individual case. The main objectives when considering whether to provide amplification or not should be: - Improve communication - Enhance environmental awareness - Enjoyment (eg music/TV/social interaction)

There are likely to be physical sensitisation issues and sound sensitisation issues, can we explain these well enough to try and address them, or will we be creating discomfort, confusion or distress….?

Discussion We all agreed this was a very difficult aspect of working with this group of people and each case must be dealt with individually.

Learning Disability Coalition Anthea Cox, Director – LDC Anthea brought to our attention the very good work and the political lobbying the LDC does on behalf of this patient group. It was suggested that we can all be supporters as well, forms were handed out for people and/or departments to register. www.learningdisabilitycoalition.org.uk or get more info from [email protected]

Business Meeting Siobhan had to leave by this point, but we all wish her well with the pending birth of her second child and hope to see her at the next meeting.

The Sensory Integration Working Group, have met on a couple of occasions, but it has been felt that such a group would need far more disciplines to get involved than SLT & Audiology. We would also need input from OT’s and Specilaist Leaning Disability Nurses at least. This project has been put on hold for the meantime.

There is a BSA Study Day – Tuesday 22nd June in University of Southampton. Topic – Motivation in rehabilitation: getting good ideas into practice. Which expands on what we have been talking about today. BSA members £50, Non-members £65 for the day, You can get more information from or register at www.thebsa.org.uk It may be helpful to see if any of the speakers would like to present to us as a group, particularly those representing the Ida institute.

Denny has a functional hearing test toolkit which many people may find useful, for more information regarding this, please see the website or contact Denny at [email protected] Siobhan also passed on some information and contact details for The Challenging Behaviour Foundation who provide information and resources free of charge to parents and unpaid carers of individuals with severe learning disabilities, and are free to download from the website. The information can also be purchased by charities and other organisations. They can be contacted at [email protected] www.challengingbehaviour.org.uk There is also a Challenging Behaviour Professionals Email Network, to access this please contact [email protected] and add this to your list of safe contacts.

Please note, my email address has changed if anybody wishes to contact me [email protected] I will forward the speakers talks to everyone once I have them.

Next Meeting October 2010

Topic: Possibly 1) extended discussion on desensitisation, or update from BSA study day. 2) Working party updates 3) CHAIN targeted query: improving services for people with learning disabilities (target group: UK, learning disabilities, service improvement/development; N=87) http://www-edc.eng.cam.ac.uk/~eh343/100330_4BoxModel.pdf

Location: To Be Confirmed Date: 6th, 13th or 20th October 2010 (to be confirmed)

More specific information regarding the next meeting will be forwarded to members closer to the date