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Consultation Response A consultation on strengthening the NHS Constitution (Department of Health) 28th January 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 focuses 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 and tinnitus, 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 consultation on strengthening the NHS Constitution. 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 UK1. Contact details Rachel Calton, Health and Policy Officer Email: [email protected] 1 Action on Hearing Loss: ’Hearing Matters’ 2011 1 Summary In the proposals for changes to the NHS Constitution we welcome the commitments to equal access to services and improved public health and wellbeing. We hope these will work in the interests of people with hearing loss through increased communication support and equipment where it is needed to access services and more proactive support for people with undiagnosed hearing loss. In summary, we support: Shared-decision making and that patients own and manage their health. NHS organisations should welcome and act on feedback. It should be the role of all healthcare workers in the NHS to make use of every contact with a patient, with the aim of improving the public’s health and wellbeing and reducing health inequalities. Care should be coordinated and tailored around the needs and preferences of patients, particularly in the interests of those with long-term conditions. Staff working “towards providing fair and equitable services for all… and helping to reduce inequalities in experience, access or outcomes of differing groups or sections of society” to make clear that services should be tailored to the needs of individuals, in the way they access services and receive treatment. The proposed additions to principle 1 to accentuate that mental health must be considered on a par with physical health. Staff aiming for dignity, respect and compassion. Local authorities taking account of the Constitution when performing public health duties. The Constitution empowering patients. We are calling for: Communication and inclusion standards running through all NHS services, to ensure that patient communication needs are consistently identified, recorded and met. Feedback processes that are accessible to people with hearing loss, and on-going uptake of our Locate and Rate feedback tool. Healthcare workers in the NHS to encourage early diagnosis of hearing loss through timely referrals and integrating hearing 2 checks into routine health assessments – particularly those targeting older people. Healthcare workers being aware of equipment available to support communication and how to access it e.g. listeners NICE quality standards around hearing loss that link public health, clinical and social needs, and electronic patient records that capture patient communication support needs. An over-arching goal of NHS commissioning to make services inclusive and accessible to the population as a whole, including those with particular communication needs. Staff training in deaf awareness and communication to appreciate, understand and respond to communication barriers in a compassionate manner. Further details and guarantees as to how, structurally, the Constitution will be implemented by Local Authorities when they are performing public health functions. The NHS Constitution to be made accessible to those who use BSL as their first language. Q1. What are your views on the proposed changes to strengthen patient involvement in the NHS Constitution? We support the emphasis on shared-decision making and the proposal that the Constitution should reflect that patients own and manage their health. The age profile of people receiving NHS care means that they are likely to have age-related hearing loss; over half (55%) of people over 60 and 90% of people over 81 have hearing loss. Hearing loss often may not be obvious. Some people with hearing loss may lip-read, others may wear hearing aids or have a cochlear implant, and others may use sign language. For patients to be at the heart of decision making, to exercise choice, and to express their interests, communication and inclusion standards must run through all NHS services, to ensure that patient communication needs are consistently identified, recorded and met. Deaf awareness and communication training amongst all staff is crucial to this. We would support electronic patient held records/information. 3 Q2. What do you think about our proposal to set out in the NHS Constitution the importance of patient and staff feedback towards improving NHS services? We welcome the proposal to clarify that NHS organisations should welcome and act on feedback. All NHS organisations should champion feedback processes and ensure they are inclusive. In particular NHS organisations should take active steps to involve deaf and hard of hearing people, and patients groups and representatives in the development of giving good care. They should also ensure that feedback processes are inclusive to people with hearing loss. Information provided on how to give feedback should be in an accessible format (large print, BSL video clips, plain English). A variety of contact methods such as e-mail, text messaging and text phones for people with hearing loss wishing to give feedback should be provided, and actively offered to patients with hearing loss. Our online Locate and Rate service, launched this year, enables the public and GPs to locate hearing services throughout the UK and provides a platform for service users to review hearing services, based on what is important to them. It currently asks patients to rate a service according to factors such as ease of access, clarity about tests and results, on-going support and, finally, whether the patient would recommend the service to a friend. We hope the rating tool will help to encourage the feedback process, support patient choice and improve hearing services’ patient focus. Q4. What are your views on including in the NHS Constitution a new responsibility for staff to make ‘every contact count’ with the aim of improving health and wellbeing of patients? We welcome the proposal to include in the constitution that it should be the role of all healthcare workers in the NHS to make the most of every patient contact, with the aim of improving the public’s health and wellbeing and reducing health inequalities, especially in a society that is getting older and developing more complex needs. 4 In order to make every contact count, effective communication is essential. Our recent research report ‘Access All Areas’ shows that currently GPs do not always face the patient, speak clearly or check that the patient has understood what has been said, in many cases leaving patients unclear about diagnosis and medical advice2. Currently, diagnosis of hearing loss is ad hoc and can take on average 10 years3, in which time people can become isolated from the work place and from friends and family networks. This delay can also exacerbate other health conditions. Evidence suggests that GPs fail to refer up to 45% of people reporting hearing loss, for an intervention such as a referral for a hearing test or hearing aids4. Effective diagnosis and management of hearing loss is important in supporting the independence and wellbeing of patients with hearing loss. We would like to see healthcare workers in the NHS using contact with patients to encourage early diagnosis of hearing loss through timely referrals and integrating hearing checks into routine health assessments – particularly those targeting older people. Q5. Do the proposed changes to the NHS Constitution make it sufficiently clear to patients, their families and carers how the NHS supports them through care that is coordinated and tailored around their needs and preferences? We support the change to the NHS Constitution that care should be coordinated and tailored around the needs and preferences of patients, particularly in the interests of those with long-term conditions. Person-centred integrated care is crucial to joining up the health and social care sectors. Currently hearing aid wearers are not benefitting from joined up health and social care; four out of five (79%)5 when fitted with a hearing aid, receive no information about other services, equipment or assistive technology, which can help to maximise independence and wellbeing. 2 Action on Hearing Loss: ‘Access all areas?’ 2013 Davis, A. et al: ‘Acceptability, benefit and costs of early screening for hearing disability: a study of potential screening tests and models’ (Health Technology Assessment 2007; Vol. II: No. 42) 4 Ibid. 5 RNID: ‘Annual Survey Report 2008’ p3 3 5 We welcome the announcement of NICE quality standards around hearing loss. These should link public health, clinical and social needs, and be delivered in a timely manner. We are calling for electronic patient records to properly capture patient communication support needs. We also call for: Health and Wellbeing Boards, Local Health and Wellbeing Strategies to promote coordinated care for people with hearing loss The NHS Commissioning Board and CCGs to actively disseminate good practice around coordinated care for people with hearing loss Hearing service providers to demonstrate and meet a commitment to service integration. All staff in NHS providers, irrespective of setting (i.e. primary care/secondary care, tertiary care, intermediate care & long term care) to be able to identify hearing loss through integrating hearing checks within assessments; communicating effectively with patients with a hearing loss and referring patients to appropriate services and equipment to support them. Q8. Do the proposed changes to the NHS Constitution make clear how the NHS will safeguard and use patient data? We support the Association of Medical Research Charities (AMRC) position, in supporting the proposed changes (Section 2a). Improved access to patient data for researchers is vitally important for translational hearing research in order to further the understanding of the efficacy of existing therapies and patient needs. Greater awareness and increased provision of opportunities for patients to participate in research will be critical in enabling the translation of recent scientific advances into new treatments for hearing loss and tinnitus. Q9. Do you agree with the proposed changes to the wording of the staff duties and the aims surrounding the rights and responsibilities of staff? What do you think about the changes to make clear to staff around what they can expect from the NHS to ensure a positive working environment? 6 We welcome the proposition that there should be a new responsibility whereby staff work “towards providing fair and equitable services for all… and helping to reduce inequalities in experience, access or outcomes of differing groups or sections of society…” to make clear that services should be tailored to the needs of individuals, in the way they access services and receive treatment. We believe an over-arching goal of NHS commissioning should be to make services inclusive and accessible to the population as a whole, including those with particular communication needs. Evidence from our 2011 Annual Survey found that 44% of respondents felt that they had experienced difficulty relating to hearing loss when visiting their GP surgery. Our recent research report, ‘Access All Areas’ shows that barriers can include contacting and visiting the GP surgery and being left unclear about a diagnosis or health advice after a GP consultation because of poor deaf awareness6. The research shows that poor access to health services for people with hearing loss causes health inequalities in terms of access to, and outcomes from NHS services. Our recommendations include: deaf awareness and communication training for all staff; a range of ways for patients to contact their GP surgery; the use of technologies such as loops systems and visual display systems; patient records that clearly indicate a person’s communication support needs and policies and procedures in place for booking communication support. In order to reduce inequalities and ensure that equal health outcomes are achieved, a focus on hearing loss is needed, to help encourage measures such as integrated r care records, the use of qualified interpreters in healthcare settings and deaf awareness amongst staff, that could help to remove barriers and create equal access to healthcare for people with hearing loss. Q10. Do you agree with the wording used to emphasise the parity of mental and physical health? Are there any further changes that you 6 Action on Hearing Loss: ‘Access all areas?’ 2013 7 think should be made that are feasible to include in the NHS Constitution? We welcome the proposed additions to principle 1 to accentuate that mental health must be considered on a par with physical health. Hearing loss often compounds barriers to inclusion and feelings of isolation. It can cause anxiety and depression and exacerbate other conditions, including dementia. In turn, effective diagnosis and management of hearing loss can work to minimise these impacts on peoples’ mental health. Q11. What are your views on the wording used to highlight the importance of ensuring that the tenets of dignity, respect and compassion are sufficiently represented in the NHS Constitution? We welcome the new wording in the values section of the Constitution and the incorporation of dignity, respect and compassion into the aims for staff. Knowledge and understanding of a person’s hearing loss is key to staff being able to demonstrate underlying compassionate values. Staff need training in deaf awareness to appreciate, understand and respond to communication barriers in a compassionate manner. People with hearing loss rely on the communication skills and patience of staff, and the forethought of those managing services, in order to have a safe and welcoming hospital experience. Deterioration in performance around dignity, for example shouting unnecessarily at patients who cannot hear, ignoring the need for communication support for a BSL user or failure to identify and support patients who use hearing aids may signal a lack of staff deaf awareness and should be addressed immediately. Q13. Do the proposed changes to the NHS Constitution make it clear what patients, staff and the public can expect from local authorities and that local authorities must take account of the Constitution in their decisions and actions? 8 Under the new health reforms Local Authorities will be performing important public health functions. Hearing loss is a widespread public health issue that demands urgent action. It can impact on health, wellbeing and employment. Noise induced hearing loss is preventable, and, on average, there is a 10-year delay in people seeking help with their hearing loss. We welcome the technical amendments in the new Constitution to make clear that to local authorities that the Constitution applies to them. However we seek further details and guarantees as to how, structurally, the Constitution will be implemented by Local Authorities when they are performing public health functions, especially in terms of letting patients, staff and the public know what to expect. Q17. How can we ensure the NHS Constitution is accessible and useable to individuals from different backgrounds and to different sections of society? As the Constitution is designed to empower patients, alert them to what they should expect to receive, and strengthen patients’ rights in relation to involvement in their health and care, we hope it will be made available in a range of formats, so it can be used by those who use BSL as their first language. We also welcome that the Constitution recognises that NHS services should be tailored to the needs of individuals, in the way they access services and receive treatment. We believe an over-arching goal of NHS commissioning should be to make services inclusive and accessible to the population as a whole, including those with particular communication needs. Evidence from our 2011 Annual Survey found that 44% of respondents felt that they had experienced difficulty relating to hearing loss when visiting their GP surgery. Our recent research report ‘Access All Areas’ shows that barriers can include contacting and visiting the GP surgery and being left unclear about a diagnosis or health advice after a GP consultation because of poor deaf awareness. The research shows that poor access to health services for people with hearing loss causes 9 health inequalities in terms of access to, and outcomes from NHS services. In order to reduce inequalities and ensure that equal health outcomes are achieved, a focus on hearing loss is needed, to help encourage measures such as integrated records of care, the use of qualified interpreters in healthcare settings and deaf awareness amongst staff, that could help to remove barriers and create equal access to healthcare for people with hearing loss. 10