When silence is no longer golden

 

Hearing loss in care homes and hospitals

Summary

i Earlier this year, emails were sent to 99 health and social care organisations inviting them to comment on the care received by elderly people with hearing loss in homes and hospitals. There were fourteen replies, mainly from small voluntary organisations covering rural areas; staff and volunteers felt isolated, even friendless, some asking for contact to be maintained

 

ii Responders were critical of the lack of training available to health and social care staff about hearing loss and the care of hearing aids. They complained that some did not know that batteries need changing and that re-tubing is necessary every few months.

 

iii Some responses referred to published research in other countries where findings were strikingly similar to those articulated by voluntary organisations in this country.

 

iv Concern was expressed about the mental health of patients when hearing aids were neglected. The little evidence received about services to hospital in-patients with hearing loss was positive but may not be representative.

 

v Greater dependency among elderly people in the health and care system and the use of new technology make it necessary to review the legal position, the official guidance that is offered to homes and hospitals and the regulatory approach.

 

Recommendations.

The Department of Health and Social Care should:

*consult on ways of clarifying the law relating to the provision and maintenance of hearing aids.

*establish an advisory panel for a limited period to assist in setting-up demonstration projects on cleaning and re-tubing hearing aids.  

 

 

NHS England should:

* require audiology departments to ensure that patients with hearing loss can have a range of assistive hearing devices demonstrated to them.

 

 

The National Institute for Health and Care Excellence (NICE) should:

* consult as necessary and issue guidance to health and care providers on the maintenance of hearing aids of residents for care home residents and hospital in-patients. 

 Hearing loss in care homes and hospitals 

1.     This report summarises the fourteen replies received from ninety nine organisations  emailed in April and May 2019. The email enquired about the experiences of recipients and their views on meeting the needs of people with hearing loss in care homes and hospitals. Organisations circulated included 78 policy makers, providers, voluntary organisations and relevant professional associations in the United Kingdom concerned with the care of elderly people and 21 from overseas. The email is reproduced in appendix 1.

 

 2.     Twelve UK organisations responded – a response rate of 15%. Four of these were small, local voluntary organisations in Scotland, Wales and the English regions while three were small, specialist UK-wide charities. None of nine NHS trusts or five audiology departments circulated responded. The National Institute for Excellence in Health and Social Care and the Care Quality Commission were the only public services to respond. One reply was from an academic institution, another on behalf of equipment manufacturers and one from an organisation representing professional staff.

 

 3.     There were two responses from overseas (10% of those circulated). One was from an academic institution that listed relevant research material; the other was the European Federation of Hard of Hearing People whose comments are outlined in paragraphs 13 and 14 below. This was the only responder to ask for anonymity to be waved. 

 

Content of responses

4.     The voluntary organisations which responded vary in scale from informal groups of volunteers with hearing loss to country-wide organisations with staff. Their descriptions of services tell of neglect and the absence of basic knowledge among health and care staff. They express surprise, distress and anger at the extent of unmet need and the unwillingness of those responsible for services to recognise how, at little cost, they could transform the lives of people in their care. Staff and volunteers in front-line charities are enthusiastic about their work but clearly feel isolated, even friendless, some asking for contact to be maintained. 

You have identified issues that are glaringly apparent in many places and that do need to be tackled and fixed.  I find it incredibly distressing to see hearing needs often so poorly misunderstood and managed…….We are a small organisation so we have to pick our battles with care and target those where we feel we can make the greatest difference.

 

5.     Responders describe how some health and care staff do not know that hearing aid batteries need changing and that re-tubing should take place every few months. One respondent believes residents are made to feel they are a nuisance if they ask for help.

One of the issues relating to care homes is the high staff turnover so training is not cascaded down or retained. In an ideal world this training would be ingrained into their induction package.

 

6.     A small national organisation said that hearing loss in homes and hospitals was high on is agenda. It went on,

 having met too many people with hearing loss whose needs have been neglected, we run a specialist outreach service….which aims to alleviate the isolation experienced by older people with hearing loss who are living in care homes….We do this by training and supporting care home management and staff to recognise and address their needs and implement hearing loss policies and protocols.

 

7.     Other responses similarly refer to social isolation caused by poor hearing and the mental ill-health issues that may follow.  Some responders highlight the need to ensure that noise is controlled in care settings and that assistive devices are properly understood and made more widely available.

 

 8.     I was sent a substantial strategy document on hearing loss prepared by an interdisciplinary panel of health and care professionals. Voluntary organisations in the same area reported similar problems of neglect as in other parts of the country.

 

 9.     An organisation covering a large rural area described how its drop-in centres serve as bases for visits to patients in their own homes and in care homes. I sought more information from this organisation about its work in care homes. It replied that, it wanted to train staff in homes and had contacted every care home in four urban centres but few responded. It described how a member of staff or volunteer visited care homes to maintain hearing aids.

 

10.  Only one responder made warm comments about the quality of relationships between staff in different services. It can be no accident that this response included observations from the local audiology department with whom my email had been shared. The department, based in a small hospital covering a rural area, reports having an open clinic which regularly receives hearing aids for repair from the wards. By working with Dementia Champions in the hospital, it has raised awareness of the link between dementia and hearing loss, leading to more referrals. All wards have communicators to assist patients who struggle with communication.

 

 11.  The organisation representing equipment manufacturers commented on the need for research and “joined-up systems” Perceptively, it expressed concern that challenges might go unaddressed. One reply suggested that some potential volunteers are put off by requirements for Disclosure and Barring Service checks. Of eleven associations circulated representing professional staff in audiology, residential care and social work, only one replied: it thanked me, “for raising this important issue” and referred me to a voluntary organisation.

 

 12 Several responses recommended research reports. Three relevant examples are given in Appendix 2.  The research took place outside the UK but findings are consistent with those articulated by voluntary organisations in this country and with my own observations.

 

 13.  The Secretary of the European Federation of Hard of Hearing People described his father’s experience with hearing loss in Denmark. He said hospital staff were knowledgeable. They cleaned and re-tubed hearing aids when necessary and knew how to communicate with deaf people. In contrast, when his father transferred to residential care, he found staff had little or no interest in hearing loss and took no steps to ensure hearing aids were working. They misinterpreted unusual behaviour as symptoms of dementia, complaining, for example, that his father stood too close to them, not realising that he wanted to better hear what they were saying. When his father said he could hear a strange voice it was assumed he was confused but it was later clear that he misheard the automatic voice of his hearing aid saying that the battery was low.

 

 14.  This correspondent considered the label, dementia, was applied unthinkingly when a resident was suffering from cognitive decline which might, in part, be caused by the quality of the care provided. Once dementia was suspected, staff were inclined to make unwarranted assumptions about how far the resident should be believed or consulted. An important meeting to discuss his father’s future was held without his presence. Information about hearing loss had now been cut from training courses and staff training manuals are out of date.

 

The legal, advisory and regulatory framework

15.  The Equality Act 2010 requires services in Great Britain to avoid putting disabled people at a substantial disadvantage to others. Similar protection is provided by Northern Ireland legislation. The Health and Social Care Act 2012 requires health and social care providers in England to follow the NHS Accessible Information Standard on meeting the communication needs of service users with sensory loss. NHS England tells me this means that, “People who need a hearing aid in order to communicate have the right to have one provided”. It goes on, “The Standard however is not law”. I am probably not alone in finding it confusing that something described as a right is not a legal right.

 

 16.  The Care Quality Commission (CQC) monitors, inspects and regulates health and social care services. The National Institute for Health and Care Excellence (NICE) provides guidance and advice to improve health and social care. Both organisations are government funded; their responsibilities are limited to England but devolved governments have organisations with similar functions.

 

 17.  Regulation 9 issued in 2014 under the Health and Social Care Act 2008 specifies that the care and treatment of service users must be appropriate and meet their needs while reflecting their personal preferences.  CQC guidance says that if it is not satisfied that a provider can comply with this regulation it must refuse registration. It would be reasonable to suppose that a provider that cannot re-tube a faulty hearing aid within 72 hours is in breach of this regulation.

 

 18.  NICE advises (NG 98) that patients with hearing aids should be informed about cleaning them and "troubleshooting" which is, presumably, a pseudonym that includes re-tubing. This assumes people with hearing loss have a level of ability in excess of that recorded by responders to this survey. Research quoted in Appendix 2 found 86% of care home residents with hearing aids needed assistance to care for them. 

 

The financial context

19.   Health and social care services are chronically underfunded. Winter crises in the health service are well documented; so are bankruptcies and home closures in the care sector. Directors of adult social care services claim that seven billion pounds has been cut from their budgets since the beginning of the decade and more cuts are in the pipeline despite increased needs. As a result, staff numbers in homes are pared to a minimum and salary levels are low. Too often, social care is not a career choice but a job, competing for recruits with shelf-stacking in supermarkets and van driving. High staff turnover and inadequate training make it difficult to maintain standards at a level that managers and owners would wish. The factors influencing the quality of care can only be understood in the context of political and financial decisions.

 

 Conclusions and recommendations

20.  Public organisations are bombarded by unsolicited questionnaires so I did not anticipate a high response rate. I hoped some would welcome a platform on which to share their views. The lack of interest shown by associations representing professional staff suggests major change must be driven from the top or by local activists.

 

21.  There appear to be insufficient experienced staff in care homes who know how to check whether a hearing aid requires attention and when advice is needed to identify whether poor hearing is caused by excessive ear wax or cognitive decline. Relatives are cautious about asking critical questions which might demonstrate the ignorance of staff and create an unpleasant atmosphere for the patient. The needs of uncommunicative residents who sit silently without drawing attention to themselves are easily overlooked.

 

22.  Services face the combined challenges of demographic change, technical advance and higher public expectations. Elderly people requiring care are almost certainly more dependent than previous cohorts and need practical help to make full use of technology. Even if the experiences of responders to this survey are atypical and my own experience is exceptional, there is sufficient evidence of poor practice to require action. Appendix 3, explains how services can be developed with little or no additional public funding. Progress will depends on mutual understanding and collaboration between staff and volunteers in audiology departments, primary care, social care, voluntary organisations and community groups.

 

23.  The law is imprecise about the rights of people with hearing loss. It would strengthen the hands of service users and their advocates if they were able to argue that the law requires a faulty hearing aid to be restored to use in a timely manner and if NICE firmed up official guidance.

Recommendation 1.

            The Department of Health and Social Care should consult on ways of clarifying

            the law on the provision and maintenance of hearing aids.

 

Recommendation 2

NICE should consult as necessary and issue guidance to health and care providers on the maintenance of hearing aids for care home residents and       hospital in-patients.

 

            Recommendation 3.

NICE should review the skills required by staff caring for people with sensory loss in homes and hospitals.

 

  1. 24.  Membership of the NICE Hearing Loss Guidance Committee is heavily weighted towards health specialisms and does not adequately represent the range of skills and experiences of personnel who respond to the day-to-day needs of adults with hearing loss. This may reflect that before 2013 its work solely related to clinical excellence in health services.

Recommendation 4.

NICE should review the membership of its Hearing Loss Guidance Committee.

 

 

  1. 25.  NICE recommends that patients should be informed about organisations that advise on and demonstrate assistive listening devices. A duty should be laid on health services to ensure that such services are available.

Recommendation 5

NHS England should require audiology departments to ensure that patients with hearing loss can have a range of assistive hearing devices demonstrated to them.

 

 

  1. 26.  Inspections have an important role in maintaining standards.

Recommendation 6.

The CQC should expect every hospital and every care home to have at least one member of staff with deaf awareness training and staff or volunteers who can clean and re-tube faulty hearing aids in a timely manner.       

 

Recommendation 7.

CQC should require homes and hospitals to keep records of occasions when a faulty hearing aid has not been restored after 72 hours. 

 

 

  1. 27.  Power and authority in health and social care services are highly fragmented. Where services are partly contracted out, acts of collaboration between staff that are intrinsically simple may require significant input from senior managers; this disempowers and demotivates practitioners. Some managers may be helped if practical guidance is available from practitioners who are familiar with the issues.

            Recommendation 8.

The Department of Health and Social Care should establish an advisory panel for a limited period to assist in setting-up demonstration projects on cleaning and re-tubing hearing aids.    

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Appendix 1.

The email enquiry sent in April and May 2019.

 

Hearing loss in homes and hospitals

 

Avoiding dementia among deaf people

 

 

I invite your comments and advice on how Homes and hospitals respond to the needs of clients and patients with severe hearing loss.  Action Plan for Hearing Loss, issued by the Department of Health and Public Health England in 2015 tells us that by 2032 an estimated 500,000 elderly residents in care homes in England will have a hearing loss needing professional intervention. (Paragraph 3.12).

 

The report highlighted, “high levels of undiagnosed hearing loss, and under-optimisation of hearing aid benefits” in care homes. It went on, “Staff have a limited understanding of the assistive technology available”. (Paragraph 5.11).

 

Although cleaning and re-tubing hearing aids are simple tasks, they require reasonable eyesight and a manual dexterity beyond that possessed by some hearing aid users and their relatives. There appears to be no established protocol in the UK about the role of staff in Homes and hospitals in maintaining hearing aids; my experience and subsequent enquiries, suggest that much depends on the initiative and aptitude of individual staff. Policy-makers and managers should ask themselves whether this is satisfactory.

 

Last year, my brother Bill (not his real name), aged 89 years, lived in a care home in the South of England. He was regularly without a working hearing-aid for several weeks despite assurances from staff that they would fix it. Due to facial cancer, saliva regularly blocked the aid for his one functioning ear. Fifty years earlier he built his own bungalow but, now he could not clean or re-tube a hearing aid and help was seldom available.

 

 

His distress continued in two hospitals. No one on the wards was able to clean or re-tube his aid. Staff believed this was the responsibility of the audiology department based at a distance and requiring a medical referral with a wait of several weeks – a clear case of the best being the enemy of the good.

 

 

Conversation entailed shouting single words, staccato, into his “good” ear. At no time was Bill advised about the range of technical gadgets available that might have assisted him.

 

 

Bill’s mental health deteriorated markedly in the weeks that his faulty aid sat on his locker while he lay on his bed, unable to converse or enjoy television. A care assistant or volunteer with minimal training could have solved the problem within minutes. The dementia which eventually engulfed him was clearly related to his enforced social isolation.

 

 

Action Plan on Hearing Loss claims the risk of dementia among over 60 year olds increases fivefold for those with severe hearing loss. (Paragraph 3.15). In the last few months of his life, nothing more could be done for Bill’s cancer or his poor mobility and eyesight. However, he would have kept in touch with the world if, atnegligible cost, his hearing aid had been cleaned each week. This would have avoided his last months becoming a terrifying ordeal and might have saved some NHS expenditure on care. 

 

 

Bill’s experience is not unique. Action Plan for Hearing Loss is one report among several that underlines the need for improved services. People with hearing loss in Homes and hospitals are among the most socially isolated in the UK. Some staff are tackling the challenge but, like the residents they care for, their work is often unnoticed and under-valued; it should be evaluated and best practice brought into the mainstream.

 

 

This email is being sent to over ninety policy-makers, service providers, professional associations and charities in the UK and beyond. Your views and experience will be welcome especially if you describe a successful project that can be replicated. Information received will be anonymised unless you indicate a willingness to be identified.  A summary of replies received by 21st June will be sent to responders’.

 

Thank you in advance,

 

Appendix 2.   

Research material

  1. 1.     In Hearing aid use in nursing homes, (Journal of the American Medical Directors Association, September-October 2004), Cohen-Mansfield and Taylor refer to the underuse of hearing aids among residents in homes and say “gross hearing impairment is undetected in clinical practice in over half of the residents”. They continue, that 86% of hearing aid users need help caring for them and conclude that changes in policy are required at all management levels to address the deficiencies identified.

 

 

  1. 2.     In a Norwegian study, Lack of ear care knowledge in nursing homes, (Journal of Multidisciplinary Healthcare September 2016) Solheim et al questioned 195 employees in seven nursing homes. Only one in ten thought they had enough knowledge about hearing aids and almost 80% reported that residents became socially isolated as a result of hearing loss.

 

  1. 3.     In Hearing Loss: why does it matter in nursing homes? (Journal of the American Medical Directors Association 2017),  McCreedy et al refer to a nationwide pattern of under-detection of hearing loss among residents and draw attention to high noise levels in homes. In twenty homes, the mean noise level in common areas was 64 decibels, in another study it reached 90 decibels at mealtimes. The level at which noise becomes unpleasant varies with each individual but experts agree that sustained exposure to levels above 85 decibels can cause hearing loss.

 

Appendix 3                  

A note on costs

Cleaning and re-tubing hearing aids require reasonable eyesight and manual dexterity. Overwhelmingly, staff in homes and hospitals can become proficient by “sitting next to Nellie” but not every home and hospital has a Nellie with the confidence to take on the task and formal arrangements may be required to kick-start the process.  If readers send me details of their experience of establishing training arrangements I will happily circulate them.

 

The necessary training can be developed with little or no additional public funds. By joining forces, a group of homes and hospitals can be expected to identify a member of staff or volunteer to demonstrate cleaning and re-tubing to others. If this proves impossible an instructor, perhaps from a voluntary organisation, can be hired for a couple of hours, the cost being met by local fundraising events. Releasing staff from day-to-day duties to participate in training has an indirect cost but this can be avoided by training volunteers. Collaborative effort can also assemble assistive hearing devices that can be demonstrated to people in need; local community groups may help with funding.

 

Wally Harbert                                                                                        October 2019.