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Consultation Response Topics for new NICE quality standards and guidance to improve the quality of social care (Department of Health) 26th April 2013 About us Action on Hearing Loss is the new name for RNID. We're the charity working for a world where hearing loss doesn't limit or label people, where tinnitus is silenced – and where people value and look after their hearing. Our response will focus on key issues that relate to people with hearing loss. Throughout this response we use the term 'people with hearing loss' to refer to people with all levels of hearing loss, including people who are profoundly deaf. We are happy for the details of this response to be made public. Introduction Action on Hearing Loss welcomes the opportunity to comment on the NICE quality standards and guidance to improve the quality of social care. Hearing loss is a long term condition affecting over 10 million people in the UK – one in six of the population. As our population ages this number is set to grow and, by 2031, there will be more than 14.5 million people with hearing loss in the UK. Unaddressed hearing loss leads to communication barriers which can result in social isolation and poor management of other health conditions. We are calling for a nationally agreed NICE quality standard for communication in social care settings. Please find below our responses to the relevant consultation questions. 1 Contact details Rachel Calton, Health and Policy Officer Email: [email protected] Q1. Do you agree with the initial list of future quality standards proposed in the consultation document? We welcome the topic ‘Preventing social isolation for people who use care services in the community’. Hearing loss can be an incredibly isolating condition and can exacerbate anxiety, depression and other mental health issues. Providing the proper support so that people with hearing loss can live independently and play an active part in their communities is crucial to avoid isolation and ensuing health problems, and to ensure that people are able to access the help they need for any other health conditions they may face. We believe that a corresponding quality standard for communication in social care settings would mean that the issue of social isolation amongst people with hearing loss or other conditions could be addressed effectively (please see Q6 and Q7). Q6. Are there any other topics you would like to see considered that aren’t in the list? It is disappointing to find no mention of communication within the list of topics to improve quality in social care. The ability to communicate is fundamental to the health, social care and wellbeing needs of people living in social care settings and the community. We would like to see consideration of a NICE quality standard for communication in social care settings. For areas this should cover please see the Appendix. Q7. What are the reasons for your suggestions? NICE quality standard for communication in social care settings. Providers of social care services too often fail to respond to the communication needs of people with hearing loss. We call for a NICE quality standard around communication to enable people with hearing loss to achieve good communication with others, including health and social care staff. 2 A NICE quality standard for communication in social care settings should: enable people with hearing loss to be involved in decisions about their care create equality of access to all services for people with hearing loss improve the quality of care provided by social care staff for people with hearing loss improve the quality of life of people with hearing loss receiving social care or living in a care home setting prevent social isolation and related anxiety, depression and mental health issues for people with hearing loss living in the community or in a care home setting. The need for a communication standard in social care settings A communication standard is needed to support the needs of the large numbers of people in social care settings who have acquired hearing loss e.g. age related hearing loss, and the more complex needs of BSL users and those with dual sensory loss or other conditions. The age profile of people in receipt of social care or in care home settings means that they are likely to have age-related hearing loss, and be living with one or more long term conditions. Over half (55%) of people over 60 years old have a hearing loss, rising to 90% of people over 81. Unaddressed hearing loss leads to communication difficulties which can cause or worsen barriers to inclusion and feelings of isolation. It can cause anxiety and depression and there is strong evidence that it increases the risk of developing dementia1. Ensuring communication needs are met in social care settings is fundamental to a person’s care and the effective management of their health conditions. In particular unaddressed hearing loss can have a devastating impact on older people who live in care homes. Without a means of communication, care home residents can find themselves locked in an isolated world where they miss out on everyday sounds and conversation. 1 Lin et al ‘Hearing loss and incident dementia’. Archives of Neurology 68(2), 2011 3 A communication standard for social care would therefore have a particularly positive impact for the 250,000 people with hearing loss in the UK’s care homes. We estimate that, by 2032, this number will double to around half a million. Our recently published report ‘A World of Silence: The case for tackling hearing loss in care homes’ found a high level of undiagnosed hearing loss among people screened in three care homes, and an acceptance by residents that losing their hearing and often their ability to communicate was just part of getting older and not something to be addressed. During interviews with residents and staff, a picture also emerged of a lack of access to services to help individuals manage their hearing loss and continue to communicate, such as hearing aid maintenance and wax management. If residents’ hearing loss is effectively diagnosed and managed, their ability to communicate can be dramatically improved. The report identified a worrying trend however, of hearing loss not being diagnosed and managed properly, flagging up an urgent need for substantial improvements to be made. For people for whom British Sign Language (BSL) is their first language and those with dual sensory loss, marginalisation and social isolation are very real risks, whether they live in the community or in a care home. There is a need to recognise the role of specialist provision of care, with care staff who can communicate in the language of choice, and proper provision of communication support such as interpreters where appropriate. Our recent report into the provision of social care for people with hearing loss, which surveyed 60 local authorities in England and eight in Wales, found that when a service user who uses BSL needs information or an assessment, in the majority of cases the service is delivered by an under-qualified interpreter (either a member of the team with no formal BSL training or up to level 3 BSL or a friend or family member2). A new communication standard should ensure that better processes to provide proper communication support are put in place for all care and support services. By meeting communication needs, services would properly support the dignity and independence of people with hearing loss, BSL users, and others. 2 Action on Hearing Loss ‘Life Support’ 2013 4 We call for a NICE quality standard around communication to improve the quality and effectiveness of care on offer in care homes and other settings, and ensure service users achieve a better quality of life. Such a standard should drive managers and staff to make the effective management of hearing loss a major priority, and to introduce improvements through better training and awareness for care givers and better processes for ensuring proper communication support are available, and that those with BSL as a first language and those with dual sensory loss are not marginalised or isolated in social care settings. Action on Hearing Loss has developed a body of evidence, recommendations and campaigns around improving experience and access to social care services for people with hearing loss, including a set of recommendations for communication standards within care homes (see Appendix). We would welcome the opportunity to work with NICE to develop a NICE quality standard for communication in all social care settings. 5 Appendix Effective management of hearing loss in social care settings can make a significant impact on the quality of care people receive. Action on Hearing Loss is calling for a communication standard to be introduced for all social care settings. We have developed communication standards for care homes covering the following areas, which could form the basis of this quality standard. Diagnosis of hearing loss 1. Care-givers know how to recognise signs that people we care for have a hearing loss. 2. Care-givers understand what they should do if the behaviour of people they care for suggests that they may have a hearing loss. 3. Recognition of hearing loss can be a gradual process; therefore, care-givers should be prepared to engage with people they care for over a long period of time. Recording and communicating hearing loss 4. There are clear procedures around assessment and recording of hearing loss, and care-givers follow these. 5. Hearing loss is clearly documented at different points, for instance, within the care record. Care-givers read and act on this documentation. Hearing aids and wax management 6. Care-givers check every day that hearing aids are working and that people we care for are wearing them correctly. 7. Care-givers know how to use the t-switch and controls on hearing aids, how to change batteries and how to clean hearing aids. 8. There are adequate arrangements for hearing aid re-tubing, repairs and battery replacement. 6 9. There are arrangements in place to minimise the number of lost hearing aids, and to ensure that lost hearing aids are replaced as quickly as possible. 10. Care-givers understand that other long term conditions may have an impact on hearing aid use, for instance, people with dementia may forget that they have hearing aids. Care-givers take steps to manage this. 11. Care-givers know who to consult (for example a GP or nurse) to examine ears for wax and to arrange ear syringing, where appropriate. Buildings 12. Induction loop systems are installed in the TV rooms, in communal rooms and in reception areas. 13. Telephones used by people we care for are fitted with induction loops or are specially designed for people with hearing loss. 14. Clear procedures are in place to ensure that all induction loops are checked and maintained on a regular basis. 15. There is good lighting in all areas. 16. There are reserved quiet areas, without televisions, where people we care for can go to hold conversations. 17. Procedures are in place to minimise the amount of background noise, for instance, in care homes table cloths are used to dampen the sound of cutlery at mealtimes. Communication 18. Care-givers are aware of communication techniques for people with hearing loss, and use these. 19. Care-givers have attended deaf awareness training. 20. Care-givers and managers take steps to stimulate conversation among people they care for in care homes for example. 7 21. Communication support, such as a sign language interpreter, is available to people who would benefit from this. 22. Care-givers understand how people they care for can use assistive technology, such as TV listeners, in order to manage their hearing loss. 23. Social care settings ensure that BSL users and those who have other specialist communication needs are recognised and supported by properly qualified staff who can communicate effectively and appropriately. 24. Communication needs within care home settings are recognised as an additional need in their own right. Information 23. Social care settings ensure that people they care for are able to access audiology departments, when appropriate. 24. Social care settings are aware of services available to people they care for, such as Action on Hearing Loss Hear to Help and facilitate peoples’ use of these service, where appropriate. 25. Social care settings access and make available external sources of information, such as leaflets about hearing aids, to people they care for and their families. 8