We have responded to the NHS England consultation on its draft standard for accessible information.

The standard will tell organisations that deliver NHS England services how they should make sure disabled patients, service users and, where appropriate, carers, receive

• information in formats that they can understand; and
• appropriate support to help them to communicate, which may include advocacy.

UK Council on Deafness response to the NHS England consultation on the Draft Accessible Information Standard (1605)

This response is on behalf of the UK Council on Deafness (UKCoD). UKCoD is the umbrella body for organisations working with deaf people in the UK.

It addresses only those aspects of the consultation document which are relevant to deaf people. By ‘deaf’, we mean people who are deaf, Deaf, deafblind, deafened and hard of hearing. ‘Deaf’ is a cultural label that refers to people who are profoundly deaf, whose first or only language is BSL and usually see themselves as part of a cultural and linguistic minority known as the Deaf community.

We also refer to communication and language professionals, which includes interpreters for deafblind people, lipspeakers, notetakers, sign language interpreters, sign language translators and speech to text reporters.

1.   Do you agree with the vision for the Standard?

UKCoD believes the draft Standard is excellent. It provides a framework which could drastically change the experience of deaf people when accessing health services. It is clear a lot of work has gone into the preparation of the consultation documents. It is also clear the views of patients have been taken seriously.

We are particularly pleased the Standard recognises an important point. What the NHS is being asked to do is not an additional burden. The NHS is simply being given an easy to follow framework so that it can comply with its existing legal obligations under the Equality Act 2010.

2.   Do you agree with what the Standard will do? This is explained in section 4 of the Consultation Document and in the Specification.

Yes.

3.   Do you agree with what the Standard includes?

The scope is missing something.

People who use a foreign sign language

In most parts of the draft, reference is made to British Sign Language (BSL). The Standard should also apply to people who sign but use Irish or a foreign sign language.

We know that in London in particular there is a sizeable population whose first language is a foreign sign language. Ideally the interpreting would be done directly to and from the foreign sign language and English.

A similar situation may arise with a deaf person who does not sign, but can lipread a foreign language.

Children

The draft refers to adult social services. Children’s social services should be included too. Exactly the same principle applies and we cannot see any practical reason for limiting the scope to adults in social care.

Private providers of NHS services

In a changing NHS environment it is perhaps less clear which services are provided or commissioned by the NHS. The draft says its provisions should apply to services commissioned by the NHS, even if provided by a private company.

It would be helpful to highlight the position regarding opticians and hearing aid providers. These are two areas of the health service which are used a lot by deaf people. They are also areas where the Any Qualified Provider (AQP) programme is a factor and where the private sector is an important provider.

Websites

In section 6, the draft discusses websites. We await the further guidance with interest.

In the consultation document it says people should be able to find and read certain pieces of information on websites. The Implementation Guidance makes clear this should not be limited to reading alone, and other online options should be available, e.g. easy read, audio, BSL. The Standard should make this clearer.

It should also suggest possible options to staff, e.g. use the communication and language professional who is present to translate the material while the clinician is present, or get BSL video clips produced which can be available online.

The Standard says there is existing guidance on making websites accessible. This is true, but such guidance rarely includes providing information in BSL. This is also the case with the Specification, which talks about adding audio but not BSL or subtitles.

The Standard’s prime aim is to make information accessible. By excluding websites an important area of health information is ruled out.

At a practical level this will lead to duplication and inefficiency. If NHS Choices was accessible it would save countless providers having to reproduce the same information in alternative formats.

Deaf people rightly feel frustrated that NHS Choices can be accessed in numerous foreign languages but not BSL or with subtitles. We can see no reason why NHS Choices should not make all their future information accessible in BSL and with subtitles.

6.   What do you think about the steps of the Standard / the requirements set out for health and social care organisations and IT suppliers?

The steps/requirements are missing something.

Establishing the communication need

Section 7 addresses how communication needs will be established. The supporting documents rightly say simply asking a question will not be enough. People should be offered access to the full range of possible options, e.g. communication and language professionals, video relay services.

Without this many people will not be fully aware of what is available or will not feel empowered to ask for it. By providing the full range of options a more accurate response will be given.

Linked to this, the Implementation Guidance presents a chicken-and-egg scenario. It recognises a deaf person might need a communication and language professional present to have the discussion about their communication needs. However, until their communication needs have been established, it is unlikely they will be present. No solution is offered in the guidance.

Pragmatic provision of support in the real world

Flexibility and pragmatism are important. A deaf person may not want a communication and language professional present at every appointment, e.g. a regular blood test. Similarly, on a ward or in a care home, a professional will not be required at all times.

It is important to be clear about how decisions will be made about when communication support is available. Presently there does not seem to be much guidance.

On a ward, staff and the patient could discuss the ward routine and agree at which points they need an interpreter and at which points other adjustments would suffice. It will obviously be important the patient feels empowered in these situations, i.e. does not feel pressured into having an interpreter just once a week.

This also applies to other deaf people who might want particular adjustments at particular times. Without guidance the Standard could become meaningless in practice.

Control of information

Patients should be able to request changes to the information recorded about their communication needs, i.e. not just to see what has been recorded, but to have that information changed. It is not clear what would happen if a service disputed the information choices made by a service user.

Systems should show when communication information was last verified with the service user. An automatic reminder should be generated when no check has been made in the past two years.

All patients and service users should be asked about any communication needs. This will make it easier to see that providers are following the Standard and it means people will not be missed.

Some staff might be reluctant to ask certain patients because they will worry the response will mean more work for them, e.g. booking communication and language professionals or adapting the waiting room system. By giving staff discretion it makes it too easy to exclude the very people the Standard hopes to assist.

Double length appointments

We know the need for a communication and language professional often adds to the length of time an appointment takes. While a double length appointment may not be required every time, the guidance should warn staff of the possibility.

Booking systems should automatically ask whether a double appointment is required once it is known that a communication and language professional is needed.

Waiting room procedures

The Standard mentions audible alerts. Vibrating pagers should be considered as these are helpful for a wide range of people. But there is no reason why staff should not be encouraged to come and find the patient in person.

Two-way communication

UKCoD endorses the attempt to make communication between people and services accessible. Making sure a person is contacted by e-mail, SMS, or Braille, is the right approach.

This is reinforced throughout the document. What is less clear is whether the person will be able to communicate/reply in this way. If the provider can send an SMS or e-mail, will the recipient be able to reply using the same format? And will they will be able to initiate contact using that method?

Many deaf people have struggled to be allowed contact via e-mail or SMS. Even when they have established such contact, it is often one-way. The provider will send them an SMS but they have no way of replying.

The Implementation Guidance says communication must be exactly that: a two-way process. However, that is not clear enough in the Standard or Specification. These alternative methods of communication should not be treated as second-rate.

We know textphones (Minicoms) often exist but are ignored by services. They also do not provide equivalence as the patient needs to be at home to use it.

Time in which different providers have to meet need

We have concerns about the flexibility given to providers when it comes to meeting a communication need. We agree there is a difference between a pre-planned appointment and attendance at A&E.

However, there is no reason why most health or social care providers should not be able to find a communication and language professional, especially a sign language interpreter, out of hours. Police forces have lists of interpreters to contact out of hours and hospitals could do the same. Providers could also include this provision in their contract with an interpreting agency. This was raised in The Report of the Inquiry into the Care and Treatment of Sarwat Al-Assaf, which followed a homicide in Nottinghamshire.

There is also the option of using a video relay interpreting service when speed is important, or employing interpreters directly. Regular slots should be considered, during which interpreters are routinely available at regular appointment times, e.g. for a clinic’s Monday afternoon session.

The existing flexibility will be used as an easy way out. We know from existing experience that some health services do not attempt to book an interpreter because they presume none will be available. Systems should be in place to make sure an interpreter can be provided within a reasonable time-frame, and attempts to meet this need should be documented.

This section should be revised so the expectations of providers are greater, and the flexibility they have is reduced.

10.    What do you think about the types of communication support and information formats we have included?

VRS and VRI

In the next few years Video Relay Services (VRS) will become increasingly important for many deaf people. Captioned telephone call services are also likely to grow (measures are currently being developed by Ofcom). NHS24 in Scotland already allows deaf people to contact their service in BSL using a webcam. Therefore, we think these should be included under methods and referred to every time SMS, e-mail or text-relay is included.

Video Relay Interpreting (VRI) should also be included. With VRI the deaf person and clinician are in the same place, but the BSL/English interpreter is somewhere else. Using the internet the deaf patient can communicate in BSL via the remote interpreter.

The Standard recognises the difficulty of finding an interpreter in some situations and VRI offers an answer, meaning deaf people should not have to wait if no face-to-face interpreter is available. The Standard and supporting documents should include and encourage VRI and VRS where face-to-face is not possible.

Relay interpreters

Although not many people might use a relay interpreter it is important to include this as a coded option for “methods of communication”.

SSE

In the Technical Document, REQSSEBSLINTERPRETER says that a “Person requires Sign Supported English (SSE) British Sign Language (BSL) interpreter for appointments or other interactions with services, either face-to-face (in person) or remotely.” Although SSE and BSL are related, they are different. This field should just say SSE/English interpreter and not mention BSL. Staff should be prompted and trained to book a BSL/English interpreter to provide SSE/English interpreting.

11.    Do you agree with the quality considerations we have included?

We support the fact BSL/English interpreters should be qualified to Level 6 and registered. But the Standard should state the qualifications required for all communication and language professionals are those required for registration with the National Registers of Communication Professionals working with deaf and Deafblind People (NRCPD). It should stipulate all communication and language professionals should be registered with NRCPD where possible.

Guidance documents should suggest staff ask to see the interpreter’s NRCPD registration card. This proves they are registered and therefore qualified. Without this, staff are having to trust that the interpreter provided is suitable.

13.    What do you think about the advice and support we are planning to give to organisations?

The advice and support is missing something

Delivery on the Implementation Plan will in our view be very important. Without it services may struggle to adopt the Standard, or to implement it properly. Training will be vital to explain why the Standard is important and what needs to be done.

Non-professional communication support

It is good the Standard will lead to ‘hearing aid’ being recorded as a method of communication support. However, we are unsure what the expected response is for a provider.

We know many deaf people on hospital wards struggle because hearing aids are left at home, removed or the batteries run out. The Standard should state whether providers need to make sure communication supports such as these are in place and working.

The Implementation Guidance suggests appropriate responses will be published in the future. We hope this is the case as staff will need support, especially in the beginning. This will apply to other adjustments, such as asking the patient where they would like to sit to make lip-reading easier.

14.    We are planning to give organisations 12 months to implement the Standard. What do you think about this?

12 months is about right.

15.    What do you think about plans for making sure that organisations follow the Standard?

Our biggest concern is how the Standard will be enforced. Asking providers to audit their ‘failures’ to make sure they do not happen again will not be enough. Its expectations should be included in contracts and delivery monitored for compliance.

A provider might argue the agency they have a contract with can only provide a communication and language professional if booked two weeks in advance. But this means they should be revisiting their contract and considering alternatives, rather than simply accepting the situation.

Without any oversight, or indeed documentation, of these failures, providers have little incentive for meeting the Standard. Failures must also be seen as situations where the person’s needs have not been met. If no attempt is made to meet someone’s needs then a service might argue they have not failed – but the service user certainly would.

While we welcome the possible role of the CQC and HealthWatch, both of these organisations already have a huge amount to be investigating. We fear they will be unable to give much attention to investigating compliance with the Standard.

As a halfway house, service providers should notify their local HealthWatch or CQC whenever there is a ‘failure’. This would not be onerous and would allow the local HealthWatch team or CQC to decide whether to take any action.

There must also be a clear, well promoted system for making a complaint about a service provider that has not met the standard.

Communication policies

Section 13 says providers should “publish and display” their accessible communication policies. We know from the experience of Trusts’ complaints policies that while they might exist, and might have been published, and might be displayed somewhere, they are not always readily available.

This provision should be strengthened. The policy should be, as a minimum, made accessible in a variety of formats on the organisation’s website. NHS England should provide a template for service providers.

Additional comments

National collection of data

The Standard is at pains to say it is not a national dataset and there will be no national collection of data. We understand the reasons for this and certainly do not want to add any burden to NHS services.

However, as your documents and the pilot make clear, nobody has any idea about the extent of communication ‘problems’. That information would no doubt have been helpful to you and be useful to others.

A yearly submission of data would not be necessary, but the benefit of collecting this information once (when the Standard is embedded) would outweigh any burden on providers. Having all the data available in xml locally, it would seem a waste not to collate it at least once. Other parts of government could well find the results helpful.

Who has the need?

The Standard says the patient/service user has a communication need. This implies the clinician/‘professional’ does not have a communication need. Being deaf does not in itself mean there is a communication barrier. The barrier is created when society finds it difficult to adjust to a person being deaf. The language should be changed to say both the deaf patient and the healthcare professional have a communication need, both need the reasonable adjustments to communicate safely and effectively.