A Simple Cure

A UK report on deaf and hard of hearing people's experiences of the National Health Service

Introduction and executive summary

One in every seven people in the UK has some level of hearing loss.

We know, therefore, that the average GP will have up to four patients in their surgery every day whose hearing is impaired.

This report reveals that, despite the frequency with which deaf and hard of hearing people use the National Health Service (NHS), the level of service they receive in both primary and secondary care often falls short of what they could reasonably expect.

RNID regularly receives examples of where deaf and hard of hearing people have experienced difficulty accessing the health system. As a result, and in anticipation of the Disability Discrimination Act (DDA) placing a legal obligation on the health service to make reasonable adjustments to accommodate disabled people, we decided to commission this report. It is also worth recognizing however, that the parts of the DDA most relevant to deaf and hard of hearing people are actually already in force. Some of the problems have already been acknowledged:

The National Health Service in England has recognised that "..disabled people often face unacceptable difficulties when they try to use NHS services". [Reference 1]

In Scotland the Health Service has also recognised this problem and stated that these difficulties "...may make it difficult or, at worst, impossible for disabled people to access the services they are entitled to, find their way around a premises and communicate with staff".[Reference 2] The Welsh Assembly Review of Health and Social Care, advised by Derek Wanless recognised that "Wales does not get as much out of its health spending as it should. [...] There is some good and some excellent performance in health and social care. But there is also widespread under-performance associated with sytemic defects." Those defects are presenting real and serious barriers for deaf and hard of hearing patients.

Together with the UK Council on Deafness (UKCoD), RNID carried out this report in collaboration with individual deaf and hard of hearing groups and charities throughout the UK. It highlights current experiences of deaf and hard of hearing people when they visit their GP surgeries and hospitals.

A principle objective was to establish whether evidence received regularly by RNID and others suggesting widespread poor quality treatment was reflected in reality.

Surveys were sent out to deaf and hard of hearing groups across the UK with some groups having a sign language user explain the research (a full list can be found in the acknowledgement section at the rear). 866 surveys were returned to the RNID (who collated and processed the data) making it a definitive study of deaf and hard of hearing people's experiences of the NHS.

Our main findings are:

In local doctor's surgeries

• 49% of profoundly or severely deaf people had been left unclear about their condition because of communication problems with their GP or nurse
• 32% 35% of deaf and hard of hearing people had experienced difficulty communicating with their GP or nurse and 32% found it difficult to explain their health problems to their GP
• 15% said they avoid going to see their GP because of communication problems; this proportion doubles among sign language users
• 28% found it difficult to contact their surgery
• 49% of profoundly or severely deaf people had been left unclear about their condition because of communication problems with their GP or nurse
• 33% of profoundly deaf sign language users were either unsure about medication instructions, or had taken too much or too little of a medication because of a communication problem

In hospitals

• 42% of deaf and hard of hearing people who had visited hospital (non-emergency) had found it difficult to communicate with NHS staff
• Only 8% of deaf and hard of hearing people had been able to benefit from a loop system when admitted to A&E
• And in 23% of those wards that did have a loop system installed, it was not working
• 77% of sign language users who had visited hospital could not easily communicate with NHS staff. The proportion who had experienced difficulty was the same for both emergency visits and non-emergency overnight stays
• 70% of profoundly deaf sign language users admitted to Accident and Emergency units were not provided with a sign language interpreter to enable them to communicate

"Many people are ignorant as to how to speak to a deaf person. Recently a Consultant could only shout [at me] when all that was needed was to speak slowly and clearly".
James, London

"When I was moved onto a Ward the information about my hearing loss was not transferred onto the board above my bed."
Maria, Wales

This damning evidence demonstrates a situation that is particularly worrying for those people who are profoundly deaf, but also hard of hearing people who must overcome difficult and often distressing obstacles in order to access the NHS.

Indeed given the number of profoundly deaf people who said they were either unsure or had taken too much of a medication after leaving a GP's surgery it is impossible not to conclude that a profoundly deaf patient faces a substantially greater risk of inadvertently taking an overdose of medication. This is simply unacceptable.

The ramifications for the NHS are serious.

With less than a year to go before the DDA comes into full force, the NHS is in danger of failing in its duties. From October 2004 the DDA requires the NHS to overcome barriers created by the physical features of NHS facilities, including the design of hospital premises, physical access to NHS buildings or fixtures in them. Possible changes to facilitate deaf people's access could include visual information displays, fitting permanent induction loops at reception counters and installing visual alert fire alarms. But the NHS is clearly failing to meet DDA obligations that are already in force. These require adjustments that are much simpler and less costly to make than physical alterations to buildings and facilities. But they do necessitate a culture of awareness among NHS staff (at all levels) of the communication requirements of deaf and hard of hearing people. There are many simple measures that would cut the number of missed appointments and miscommunication significantly and greatly increase deaf people's access to NHS services.

In terms of cost the implications are profound. Missed appointments are draining NHS staff time and resources. Misdiagnosis or the need for repeat appointments due to poor communication is exacerbating that situation for the health service as a whole. Therefore poor communication with deaf and hard of hearing patients is not only harming patient care for those people, but for the wasting resources available to the NHS to treat everybody. This report shows that 24% of 28% of severely/profoundly deaf patients and 17% of hard of hearing patients had missed an at least one appointment (almost 3 appointments on average) because of poor communication.not being able to hear staff calling out their name - a further 19% had to make, what was essentially an unnecessary follow-up appointment to have their medication or illness properly explained over five times. We estimate that the cost to the NHS in terms of missed appointments alone is over £273 at least 20 million per year.

Clearly, the overwhelming majority of staff within the NHS wish to deliver a fair and effective level of service to their deaf and hard of hearing patients. However, this report makes it clear that both the infrastructure and resources are simply not in place to allow them to do so and that there also needs to be a shift in attitude towards deaf and hard of hearing people amongst some health professionals.

Patient Choice

The NHS in England has rightly recognised that patient choice is crucial. It is impossible to exercise choice without clear communication and access to all the information. The Building on the Best: Choice, Responsiveness and Equity in the NHS report published on 9 December 2003 highlights six initiatives that will be taken as the first steps to increase patient choice:

• giving people a bigger say in how they are treated by being able to record their health and personal preferences in their HealthSpace that in time will link to their electronic patient record
• increasing access to a wider range of primary care services, particularly in deprived areas
• increasing choice of where, when and how to get medicines
• booking appointments at a time that suits patients from a choice of hospitals
• widening choice of treatment and care at the beginning and end of life
• ensuring people have the right information, at the right time with the support to use it

But to make informed choices patients will need to have all of the information at their disposal. Poor communication will result in deaf and hard of hearing patients losing out on these welcome improvements in the relationship between patients and health professionals, as they deliver their care. The health service must take action to meet its obligations under the Disability Discrimination Act, but also ensure deaf and hard of hearing patients are not left behind in the development of best practice by the service.

Conclusion and recommendations

The NHS generally offers a first class service to patients and without its expertise millions of deaf and hard of hearing people would find it impossible to receive first class quality healthcare.

Nonetheless, this report demonstrates that there are currently serious problems in the delivery of services to deaf and hard of hearing people and that action is needed to address those shortcomings.

Under the DDA, by October 2004 all NHS Trusts , Boards and secondary care groups will need to have made all "reasonable adjustments" to ensure their services are fully accessible to disabled people. This means we need to see urgent action taken to improve the delivery of health services - and avoid potential legal action.

The NHS needs to meet existing and forthcoming obligations to its deaf and hard of hearing patients. They can do so by implementing the recommendations listed below:

Recommendations

Frontline NHS Staff Communication

• Widen the availability of new technology such as video interpreting
• Take active steps to involve local groups in the development and use of new facilities/technologies within the local health authorities
• Install visual displays in all reception areas, as opposed to relying on patients hearing their name called
• Conduct a Disability Access Audit which includes the needs of deaf and hard of hearing people
• Ensure all written communication, such as letters confirming appointments, are written in clear English for profoundly deaf sign language users

Staff Training

• Instigate deaf awareness training for all medicine and nursing undergraduates in medical school curricula
• NHS to instigate training seminars with the aim of ensuring that all primary care surgeries to have at least one "front-line" member of staff who has been formally trained in deaf awareness
• NHS to instigate training seminars with the aim of ensuring that all secondary care units to have at least one "front-line" member of staff who has been formally trained in deaf awareness

RNID and the Department for Work and Pensions, (DWP), are working closely together to increase the number of available fully qualified BSL-English interpreters, of which there is a current shortage. However - there are other ways that hospitals and doctor's surgeries can supply communication support to sign language users, such as video interpreting.

We recognise that some health service professionals have concerns over privacy relating to the use of BSL-English interpreters for deaf people. However, it is established practice to do so. Guidance issued jointly by the Disability Rights Commission, British Deaf Association and RNID on providing BSL-English interpreters under the Disability Discrimination Act for service providers states "it is generally desirable to obtain a BSL-English interpreter in situations where clear communication is important." [Reference 3]

It is vital that the NHS works with local and national stakeholders to identify and resolve the problems identified in this report and continues to engage with patient groups to modernise its services, ensuring that the dedicated professionals working within the system can provide a fully accessible service to the nine million deaf and hard of hearing people in the UK.

We will be working closely with Government, health professionals and other interested parties to ensure that the one in seven deaf and hard of hearing people who need to use the health service receive the same first class service that everybody has a right to expect.

This report would not have been possible without the active co-operation and facilitation of the United Kingdom Council on Deafness (UKCoD).

We are also very grateful to the following organisations for their invaluable assistance in compiling this report.

United Kingdom Council on Deafness
Birmingham Institute for the Deaf
Brent Deaf People's Ltd
Cornwall Deaf Association
Ddeaf Equality Forward
Deaf Connections
DeafLincs
Deafness Support Network
deafPLUS
Deafway
Gloucestershire Deaf Association
Gwynedd Hard of Hearing Forum
HI Kent
Hull Deaf Institute
Leicester Centre for Deaf People
Mansfield Society for Deaf People
Northallerton & District Centre for the Deaf
Royal Association for Deaf people
Sussex Deaf Association
Walsall Deaf People's Centre
West Sussex Deaf and Hard of Hearing Association

Case Studies

Anne

Anne's 13 months old son was in hospital with double pneumonia. For a couple of days he had to be supplied with oxygen. After a few days his oxygen levels were considered good enough to be taken off the oxygen machine-as a trial. Anne was with her son on her own, after around an hour he didn't seem well, he grew very quiet and his oxygen level seemed to be dropping.

Anne attempted to urgently attract the attention of medical staff. She said:

"I was worried and so went to ask for a nurse. The nurse at the reception barely took time to listen to me and pointed to another nurse, I went up to that person and then to other nurses, but was ignored. Or they said something that I missed as it was very quickly, in the passing. I pressed on the "call" button, but nobody came, and only when I started crying someone came."

Mary

Mary's teenaged daughter was rushed to hospital in the middle of the night with a number of symptoms. When Mary reached the hospital there was no communication support available, there was a sign language interpreting service available - but only during office hours.

It took over an hour for a doctor to inform Mary that her daughter had almost been placed in intensive care.

Later, Mary's daughter stabilized and she was moved to a resuscitation room, where a male nurse who had been in the room with Mary and her daughter seemed unwilling to communicate with her. Suddenly the nurse wheeled her daughter out of the room without attempting to inform Mary of where they were going, or what was happening. They were moved to the children's ward.

As Mary sat by her daughter's bedside the night nurse came across and attempted to wake her daughter up. Mary protested that she was asleep, but was told that she needed her daughter to be part of a discussion. It transpired that the night nurse only wanted Mary's daughter to act as an interpreter.

References

1. "Doubly Disabled" Report, 1999 (NHS Executive)
2. "NHS Scotland and the DDA" - http://www.show.scot.nhs.uk/hddda/
3. Guidance on providing British Sign Language/English interpreters under the Disability Discrimination Act 1995; Disability Rights Commission, British Deaf Association, RNID

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