One year on: the All Wales Standards for communication and information for people with sensory loss
Report by Action on Hearing Loss Cymru, RNIB Cymru and Sense Cymru, December 2014
Foreword
An historic day for Wales
In December 2013, the Health Minister, Mark Drakeford, launched the Accessible Healthcare Standards for People with Sensory Loss in Wales.
This was an historic day – the day when Wales became the first country in the UK to lay out clearly how NHS services would be delivered accessibly to people who are deaf, hard of hearing, blind, partially sighted or have dual sensory loss.
Professor Drakeford said, “The NHS must be accessible to all groups and these standards - once fully implemented - will help to address the barriers that people with sensory loss face in accessing health services, particularly in helping staff to identify patients with sensory loss and meeting their needs.
"The All Wales Standards have been shaped by people with sensory loss, working collaboratively with Welsh Government, the NHS Centre for Equality and Human Rights and other key stakeholders and the standards are the first of their type in the UK.”
The Standards set out how the Welsh NHS would deliver its requirements to meet the Equality Act for people with sensory loss.
So, one year on, the charities working with people with sensory loss thought it timely to review progress. We wanted to ask: what impact are the new Standards having on the life of people with sensory loss?
This report is the conclusion of that work, featuring the snapshot views of more than a 100 people in Wales who have a sensory loss. We are very grateful to every single person who gave their time to share their experience of using the NHS in Wales.
The picture painted is a grim one.
Dignity still not being respected
People with sensory loss in Wales are still leaving hospital every day, unsure of how much medication they are meant to take, unsure of what advice they have been given.
In our hospitals, people are still facing needless barriers due to their hearing and sight loss. Every day, patients continue to feel their dignity is not being respected and their communication needs overlooked.
We are undoubtedly seeing some progress in that Health Boards are spending time looking at their services for people with sensory loss. We know that most health workers in Wales would be horrified at the thought that they provide an inferior service to a person with sensory loss. We know that they need and want to be given the tools to do their job in the safest and most appropriate way.
But the progress we’ve seen is plainly not enough.
Action needed
Put simply - patients are not seeing the increased accessibility they were promised.
This is a sobering report that needs to be addressed by Welsh Government, Health Boards and all stakeholders.
The commitment to increasing standards of care for people with sensory loss needs to be prioritised and implemented – and fast.
Richard Williams, Director, Action on Hearing Loss Cymru
Ceri Jackson, Director, RNIB Cymru
Wayne Lewis, Head of Services, Sense Cymru
Key findings
· 91% of patients with sensory loss are not aware of any improvements in the way healthcare services communicate and share information with them
· Only around 1 in 5 patients are asked about their communication and/or information needs by healthcare services across both primary and secondary care settings
· 58% of respondents said that they did not know how to report a concern or complaint
Introduction
In Wales an estimated 500,000 people are affected by hearing loss (1) and 100,000 people are living with sight loss that has a significant impact on their daily lives (2). Around 18,850 people in Wales are affected by a combination of sight and hearing loss, known as dual sensory loss or deafblindness (3), which causes difficulties with communication, accessing information and mobility. Sensory loss is particularly prevalent among older people: as many as 1 in 9 people over the age of 60 and 1 in 3 people over the age of 85 are living with sight loss (4); over 70% of older people will have hearing loss (5); 62% of the deafblind population are over 70 (6).
As many people with sensory loss are older, many will have other medical conditions which are not linked to their sensory loss. Likewise, children whose sensory loss is congenital are more likely to require specialist input from a variety of services, including medical care. This means that people with sensory loss are significant users of health services in Wales. It is therefore vital that health services across the spectrum are able to recognise and respond to the information and communication needs of people with sensory loss.
The Equality Act requires healthcare services to make reasonable adjustments to ensure equality of access to healthcare services for disabled people. As well as the legal requirement, there are practical reasons why health services should ensure they meet information and communication needs. Failing to communicate with people in a way that they can understand, or provide information in a format that a patient can read, wastes time and money and puts patients at risk. Thus we welcomed the All Wales Standards for Accessible Communication and Information for People with Sensory Loss in providing further specific guidance for health services on meeting the information and communication needs of people with sensory loss.
One year on from the publication of the Standards, Action on Hearing Loss Cymru, RNIB Cymru and Sense Cymru surveyed service users who had experience of using health services to see what impact the Standards have had on the experience of people with sensory loss when accessing these services. We will use this report to inform the work of the Accessible Healthcare Standards Steering Group, including the NHS Centre for Equality and Human Rights’ (NHS CEHR) annual report on the implementation of the standards.
Methodology
120 people with sensory loss were surveyed, interviewed or took part in focus groups. Responses to the survey were obtained from each of the seven Health Boards (HB) areas in Wales. Interviews and focus groups were primarily held in South East Wales and the data obtained reflects this clustering.
Table 1: number of responses from each Health Board area
Health Board (HB) area / Number of responsesAbertawe Bro Morgannwg University HB / 34
Aneurin Bevan University HB / 10
Betsi Cadwaladr University HB / 15
Cardiff and Vale University HB / 27
Cwm Taf Univeristy HB / 8
Hywel Dda University HB / 5
Powys Teaching HB / 6
Not specified / 15
In line with the Standards, people questioned were asked about their experience of primary care, scheduled secondary care and emergency care over the previous 12 months. Questions covered whether patients noticed an overall improvement in the way health services communicate and share information with them and specifically addressed:
· whether patients were asked about their information and/or communication support needs and whether these needs were met;
· whether staff were able to communicate well with them;
· the physical environment and how this impacted on them.
Responders were also asked about their awareness and experience of the complaints process. A copy of the survey questions is attached at Appendix 1.
The number of responses to each question varied, as not everyone had used health services in each area of care, and depending upon the type of sensory loss, some questions were not relevant.
15
Results
Primary care
86% of patients with sensory loss reported no improvement in the way GP surgeries communicate and share information.
This feedback is very disappointing; it appears that implementation of the standards has resulted in little change. For many people their GP is the first port of call when they have a non-urgent health problem. Yet the feedback we received suggests that there remain significant barriers for people with sensory loss in accessing GP services.
Information and communication needs
Only 19% of people surveyed who needed information in an accessible format were asked about their information needs.
76% of people needing information in an accessible did not receive information in the correct format.
“My GP is aware I am deafblind, as are the practice staff. They have not offered any alternative formats and they send letters in font too small for me to read. They refuse to use email although I have asked for this a few times.” Deafblind person, Aneurin Bevan UHB.
Everyone has the right to access information in a format that is accessible to them. However, this survey found that more than three quarters – 76% – of respondents who need information in an accessible format were not provided with information about their conditions in the correct format. This particularly affects people with sight loss.
Not getting information in an accessible format compromises confidentiality, through needing a third party to relay information to the patient; it can also compromise wellbeing and independence, for example if the patient cannot read a dietary advice sheet or how to take medication correctly. At focus groups with blind and partially sighted people, this issue was highlighted. While it was recognised that current IT systems may not be designed to facilitate producing information in accessible formats, it was felt that GP surgeries could be more proactive in meeting the needs of individuals, such as emailing information or increasing font size on communications, and that this could be done at little extra cost. However longer term, more sustainable and systematic ways of making information accessible must also be sought.
64% did not receive the communication support they need when accessing primary care.
The Final Report of the Accessible Healthcare for People with Sensory Loss Steering Group (2011) stresses that ineffective communication with patients with sensory loss is a patient safety issue (7). Of those surveyed, we can conclude that almost two thirds were potentially put at risk by not receiving the appropriate communication support to enable them to engage in and fully understand their consultations with healthcare professionals.
Staff awareness
“On a recent visit to the GP I needed to ask the Doctor to look at me and not at the computer screen when speaking. On asking if there was a 'Hearing Alert' on the front page of my notes the answer was No! He has now put a note on and I asked him to take care to do so with other patients who have a similar problem.” Person with hearing loss and lipreader, Powys Teaching HB.
“A lot of it is common courtesy, for example you see different GPs and other staff when you go to the GP but they don’t introduce themselves, they don’t tell you where the chair is when you go into the room, and so on. It’s just ‘yes, how can I help you?’” Blind or partially sighted person, Abertawe Bro Morgannwg University HB.
57% of respondents met at least one member of staff who wasn’t able to communicate well with them.
Too many people with sensory loss are still not being communicated with effectively by staff. Effective communication between staff and patients with sensory loss is reliant on staff awareness of the patient’s particular communication needs. Providing this basic information on patient files using a flagging system could help improve patient experience to the extent where patients feel that all staff are able to communicate well with them because they have the knowledge and tools to do so. However, in focus groups with blind and partially sighted people, some said that even though their sight loss was flagged on their medical record, the GP didn’t seem to look at this information until they were in the consulting room. By this point it was already too late to offer some of the assistance they needed, for example, with checking in for their appointment, finding their way to the consulting room, locating a chair within the room (and so on). In addition, feedback highlighted that systems need to be capable of flagging when a parent or carer has sensory loss and what adjustments they require.
“My father has been unconscious four times in the past year and has needed emergency treatment plus follow-up. Here I have needed to communicate with medical staff and gain information. This isn’t just about a deaf person’s appointments, it is also about next of kin issues too” – British Sign Language user, address not given.
Primary care environment
22% reported that their surgery is poorly designed to meet their needs.
“The surgery is very accessible for someone with physical disability, but because of the degree of my sight loss, it's irrelevant to me.” Blind or partially sighted person, Cardiff and Vale UHB.
The vast majority – 78% – of respondents said that their surgery environment is either acceptable or well-suited to their needs as a person with sensory loss and there were examples of good practice:
“As I approached the receptionist she asked me can I help. I told her that I had an appointment for a flu jab. She offered to take me to a seat. Then she got on to the phone to the nurse and told her that she must come and get me as I am blind. After I had the jab the nurse offered to take me to the main door.” Blind or partially sighted person, Betsi Cadwaladr UHB.
However, there is clearly a distance to be travelled in making GP surgery environments accessible to all and examples of good practice were not widespread. This was particularly true for respondents who were blind, partially sighted or deafblind, who noted that navigating around healthcare environments is a major worry, and can put them at risk.