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National Institute for Health and Care Excellence Care of the Dying Adult Stakeholder Comments – Draft Scope NOTE: NICE is unable to accept comments from non-registered organisations or individuals. If you wish your comments to be considered but are not a registered stakeholder, please register via the NICE website or contact the registered stakeholder organisation that most closely represents your interests and pass your comments to them. Please fill in both the ‘stakeholder organisation’ and ‘name of commentator’ fields below in order for your comments to be considered. This scope is focused on the last few days of life. NICE would be grateful for your views on whether this is the correct timeframe within which to focus this guidance. Some of the areas the scope proposes to cover may arise in specific terminal conditions at an earlier stage, perhaps weeks before death occurs. NICE would be grateful for your views on aspects of difficulty with clinical decision-making and symptom management in the last few weeks of life, where a formal review of evidence may guide Stakeholder organisation: Action on Hearing Loss Name of commentator: Christina Lowe, Research & Policy Officer [email protected] Comments Comm ent No. Section no. Indicate number or ‘general’ if your comment relates to the whole document Please insert each new comment in a new row. Please do not paste other tables into this table, as your comments could get lost – type directly into this table Proformas that are not correctly submitted as detailed in the line above may be returned to you. PLEASE NOTE: The Institute reserves the right to summarise and edit comments received during consultations, or not to publish them at all, where in the reasonable opinion or the Institute, the comments are voluminous, publication would be unlawful or publication would be otherwise inappropriate. 1 General Action on Hearing Loss is the largest UK charity representing people with hearing loss and tinnitus. 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. Action on Hearing Loss welcomes the opportunity to comment on the ‘Care of the dying adult’ draft scope. Hearing loss affects over 10 million people in the UK – one in six of the population. As our society 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. Hearing loss is the most widespread long-term condition among older people, experienced by almost three quarters (71%) of all people over 70 years. This means that many of the people who are in care in the final stages of dying are likely to have a hearing loss. It is imperative that their care takes into account their communication needs and enables them to communicate with their family and loved ones in the final days of their life. We conducted research in elderly care wards, which found that issues with hearing loss and communication are common. Staff felt that there is a pressing need to improve the identification of hearing loss among older patients to support them while in care. The research found that making small changes, such as having a personal listener available for patients who are struggling to communicate, can have a big impact on patient experience and can enable patients who would otherwise have struggled with conversation to communicate with staff, visitors and other patients. In 2014 we conducted a Nursing Practice pilot project in an Elderly Care Assessment Unit (ECAU) at Heartlands Hospital, Birmingham. Prior to that pilot project, we conducted a baseline assessment surveying 20 staff and 33 patients on the ward. We found that: - More than half (58%) of patients had some difficulty in hearing staff while in hospital - 71% of patients did not fully understand what staff were saying - 43% of patients felt that they were not fully involved in decision-making regarding their care - All staff experienced communication difficulties with patients, possibly due to hearing loss - Several patients on the ECAU had not brought their hearing aids with them to hospital because of concerns that they would be lost or would be an inconvenience As part of our pilot project, we developed a Nursing Practice Toolkit to help staff to support patients with hearing loss. The toolkit is freely available on our website at: www.hearingloss.org.uk/supportingyou/gp-support/nursing-toolkit PLEASE NOTE: The Institute reserves the right to summarise and edit comments received during consultations, or not to publish them at all, where in the reasonable opinion or the Institute, the comments are voluminous, publication would be unlawful or publication would be otherwise inappropriate. Following on from the pilot project, we have developed good practice recommendations that care services should follow to improve the care of older people with hearing loss: 1. Provide all staff with training in recognising and understanding hearing loss, communication tips, and basic hearing aid maintenance. 2. Provide staff with access to a hearing loss support kit, including a hearing aid maintenance kit, so hearing aids can be maintained and repaired on wards. 3. Improve communication by following communication tips and providing patients who are struggling to hear with a personal listener 4. Record hearing difficulties in care plans and patient notes 5. Make hearing aid storage boxes available to patients 6. Appoint hearing loss champions 7. Implement a hearing loss pathway to help staff support people with hearing loss 3 3.d Communication needs must be identified, recorded and met as part of the process to understand an individual’s needs and make suitable care plans for dying people. NHS England’s forthcoming Accessible Information Standard provides a clear framework for all statutory health and social care services to follow to ensure the communication needs of patients and carers with hearing loss, sight loss and learning disabilities are properly identified, recorded and met. 4 3.e We welcome the recognition of the necessity of good communication to ensure that people are involved in the decision-making process about the care that they or their loved ones receive. To communicate well, people with hearing loss may require working hearing aids, equipment (such as a personal listener), or communication support (such as an interpreter). Staff can take simple steps to ensure that people with hearing loss are able to communicate, which are outlined above. Please email this form to: [email protected] Closing date: 5pm on 29 August 2014. PLEASE NOTE: The Institute reserves the right to summarise and edit comments received during consultations, or not to publish them at all, where in the reasonable opinion or the Institute, the comments are voluminous, publication would be unlawful or publication would be otherwise inappropriate.