Notes on meeting the cost of meeting individuals’ needs

The following notes have been prepared in response to queries about the cost of meeting individuals’ information and communication needs as part of implementation of SCCI1605 Accessible Information – referred to as ‘the Accessible Information Standard’ or ‘the Standard’. It is intended to support organisations to recognise the benefits associated with the Standard, as well as to guide efficient and effective implementation, including that which ‘adds value’.

The advice provided here aims to support implementation of the Standard by applicable organisations. The sub-sections provide information – or ‘notes’ – on particular topics as relevant to the cost of meeting individuals’ needs, and do not attempt to cover any given topic or aspect of the Standard in detail. Organisations should continue (and are advised) to refer to the Specification and Implementation Guidance for definitions and specific details about the Standard’s scope and requirements, which the below does not alter or supersede.

With regard to terminology and definitions, readers should consult the Specification for clarity on relevant and particular terms including terms specifically defined by the Standard (especially sections 1 and 7.1).  Where the term ‘patients’ is used in this document, it should be taken to mean, “patients or service users with information and / or communication support needs relating to a disability, impairment or sensory loss”.

With regards to information provided about anticipated costs of professional communication support and alternative formats, readers should note that this information is indicative only and provided as an aid to preliminary planning. It is believed to be correct as of May 2016. However, organisations should be aware of local and regional variations, and not rely on the below in the absence of concrete data from (potential) suppliers.

  1. Note on the funding position
  2. Note on legal context
  3. Note on benefits
  4. Note on ‘missed opportunity’ costs
  5. Note on needs versus preferences
  6. Note on anticipating unmet need
  7. Note on meeting the needs of people who are d/Deaf or have hearing loss
  8. Note on meeting the needs of people who are blind or have visual loss
  9. Note on meeting the needs of people who are deafblind
  10. Note on meeting the needs of people with a learning disability
  11. Note on achieving best value
  12. Note on costs of accessible information / communication support

1. Note on the funding position

As stated in the Implementation Plan for the Standard, “There will be no specific funding made available to organisations to support the implementation of the Standard. This reflects the fact that the Standard clarifies and supports organisational compliance with existing legal duties […], rather than introducing a ‘new burden’ and is intended to support direct patient care. There is no national collection, data set or secondary use of data proposed. It also reflects the fact that although there will be initial costs to implement the Standard,  this initial investment will lead to a range of identified benefits – for both organisations and patients – including the generation of cost savings in the future…”

It is acknowledged that funding arrangements for the production of alternative formats and provision of professional communication support differ significantly, both across different organisation types and across different geographies / local health and care economies. The Accessible Information Standard does not provide direction about how accessible information and communication support should be funded (as this would be out of the scope of an ‘information standard’).

Organisations should be mindful of their ‘reasonable adjustment’ duties, as set out in the Equality Act 2010, and, for local authorities, settlement arrangements as part of the Care Act 2014. Advice to service providers with concerns or questions is to consider the information set in this document, and to liaise with your commissioning organisation as appropriate.

2. Note on legal context

The key ‘existing legal duties’ referred to in the above statement are detailed in the Equality Act, which became law in October 2010. The Act replaced, and aimed to improve and strengthen, previous equalities legislation, including the Disability Discrimination Act 1995. The Equality Act (the Act) covers all of the groups that were protected by previous equality legislation, known as Protected Characteristics, one of which is disability.

The Act places a legal duty on all service providers to take steps or make “reasonable adjustments” in order to avoid putting a disabled person at a substantial disadvantage when compared to a person who is not disabled. Guidance produced by the Equality and Human Rights Commission (EHRC) states that, “Anything which is more than minor or trivial is a substantial disadvantage.” The Act is explicit in including the provision of information in “an accessible format” as a ‘reasonable step’ to be taken.

In addition, the Care Act 2014 details specific duties for local authorities with regards to the provision of advice and information, this includes the requirement that, “Information and advice provided under this section must be accessible to, and proportionate to the needs of, those for whom it is being provided.” The NHS Constitution also states that, “You have the right to be involved in discussions and decisions about your health and care…and to be given information to enable you to do this.”

Furthermore, the Mental Capacity Act 2005 Code of Practice provides clarity on the requirement to provide information in alternative formats and support to aid understanding, “To help someone make a decision for themselves, all possible and appropriate means of communication should be tried.” Of note, “Certain categories of people are legally required to ‘have regard to’ relevant guidance in the Code of Practice,” this includes, “…anyone who is…acting in a professional capacity for, or in relation to, a person who lacks capacity…”

3. Note on benefits

Organisations concerned about the cost of implementing the Standard should be mindful of the fact that significant benefits – financial, qualitative and societal – have been identified as being associated with it. The top five identified benefits are as follows:

  • Improved health and wellbeing amongst patients in the key affected groups due to increased take-up of early intervention and prevention opportunities as part of national programmes (for example NHS Health Checks and ‘flu vaccination), ability to participate in decision-making and improved compliance with treatment / medical advice.
  • Improved patient safety due to ability to understand and follow information regarding care and treatment, including medicines management and pre- and post-operative advice.
  • More appropriate use of services by patients in affected groups including increased use of primary / routine care and services and reduction in urgent and emergency care usage.
  • Improvement in the effectiveness of clinical care due to addressing barriers to communication.
  • Improvement in patient experience and satisfaction, and reduction in complaints and litigation associated with failure to provide accessible information and communication support.

Organisations are advised to consider the following potentially cash-releasing and efficiency-generating benefits in particular:

  • Reduction in overrunning / late clinics due to ability to schedule and allow for additional appointment time for patients with communication needs;
  • Reduction in ‘Did Not Attends’ and resulting reduction of wasted staff time and more efficient use of equipment / facilities;
  • Reduced complaints and litigation;
  • Avoidance of duplication of effort and double-booking / incorrect booking of communication support;
  • Reduction in staff time spent identifying, understanding and acting upon patients’ / service users’ needs (due to there being a clear and consistent process in place as part of business as usual).

4. Note on ‘missed opportunity’ costs

As outlined above, a range of anticipated benefits have been identified as associated with implementation of the Standard, including benefits for service providers, for the wider heath and care system, as well as for patients, service users, carers and parents with information and / or communication needs relating to a disability or sensory loss.

To put these benefits in context, and to further clarify the rationale for the Standard, it may be helpful to highlight some of the ‘missed opportunity’ costs associated with failure to provide accessible information and communication support to individuals. Organisations should consider how the costs of meeting individuals’ needs are ‘offset’ by the impact of not meeting their needs – i.e. the ‘missed opportunity’ costs.

In 2013 Action on Hearing Loss (formerly the Royal National Institute for Deaf People (RNID)) published Access all Areas? The report showed that 28% of people with hearing loss had left their GP unclear about a diagnosis, and 19% had been unclear about their medication. 14% of people with hearing loss had missed an appointment due to not hearing their name being called in the waiting room.

For those individuals, this is a frustrating and often upsetting experience, and may also lead to delays or errors in diagnosis and / or treatment – potentially a personal tragedy in its own right. Financially, however, the facts are also stark. There are more than 11 million people with hearing loss in the UK, if 14% of them have missed an appointment due to not hearing their name being called, that is more than 1.5 million missed appointments. Estimates for the cost of a missed appointment in a primary or secondary care setting vary significantly, from £10 to £100. Even at the lowest estimate, if 1.5 million people with hearing loss miss one appointment a year, that is costing the NHS £15m annually as a minimum.

Prior to this, in 2006 the then RNID, working with the UK Council on Deafness, published ‘A Simple Cure’. The report calculated that the cost to the NHS of GP appointments missed by d/Deaf people alone could be £20 million a year.

Without a suitably qualified communication professional, people who use British Sign Language (BSL) in particular are at greater risk of poor care and poor health. Research by the charity SignHealth entitled Sick of it, published in 2014, showed that over a third (34%) of people who use BSL were unaware they had high or very high blood pressure and more than half (55%) of those who said they had cardiovascular disease were not receiving appropriate treatment – which suggests there are problems with communication and understanding. SignHealth’s research also showed that “…poor diagnosis and ineffective treatment of Deaf people are currently costing the NHS £30 million a year.” They also point out that, “The suffering caused to Deaf people is incalculable.”

Although the above reports focus on people who are d/Deaf or have hearing loss, it is clear that many of the same problems are also faced by people who are blind, deafblind or have visual loss, and people with a learning disability. For example, they may be unable to read, and therefore to act upon, standard print appointment letters or reminders, and may miss out on routine information about signs and symptoms of ill health, and health improvement initiatives.

The Final Report of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD), included the findings that, “…men with learning disabilities died, on average, 13 years sooner than men in the general population, and women with learning disabilities died 20 years sooner than women in the general population.” These stark figures represent the continuing reality of years of life lost by people with a learning disability, to which a lack of ‘reasonable adjustments’ in the form of support to communicate or receive accessible information plays a significant contributory part.

In addition, the engagement activity carried out by NHS England to inform the development of the Standard clearly showed that many people with a sensory loss or learning disability felt that they had missed out on information relating to their health or care (including with regards to prescription medication) and had missed appointments or treatment due to receipt of information in incorrect formats. Some reported deliberately avoiding accessing routine and primary health care due to previous poor experiences of not receiving communication support.

5. Note on needs versus preferences

The Standard requires that organisations ensure that patients who have information or communication needs relating to a disability or sensory loss receive:

  • ‘Accessible information’ (‘information which is able to be read or received and understood by the individual or group for which it is intended’); and
  • ‘Communication support’ (‘support which is needed to enable effective, accurate dialogue between a professional and a service user to take place’).

The Standard does not necessarily require the provision of information in a patient’s ‘preferred’ format; rather it requires the provision of information in a format that the patient can read or otherwise access and understand. It is the patient’s information and communication ‘needs’ which must be met, which may differ from their preferences. The ‘judgement’ or ‘assessment’ about whether this requirement has been fulfilled lies with the individual patient themselves, i.e. can they read, access and understand the information? Can they ‘use’ the information as it was intended? If they can, then the organisation has met this aspect of its obligations under the Standard.

In the context of person-centred care, organisations may wish to be mindful of patients’ preferences, and best practice would of course be to accommodate them, however it is not a requirement of the Standard. Organisations are advised to discuss accessible formats for information with patients, including suggesting alternatives which are most economical for the service, to determine whether they are accessible to the individual (i.e. will meet their needs).

6.    Note on anticipating unmet need

It is difficult to quantify the level of existing unmet need for information in alternative formats and communication support, as there is no national collection of data about individuals with particular needs. Various reports have endeavoured to estimate or extrapolate the number of individuals with particular disabilities – for example people who are d/Deaf or have some hearing loss – but not their communication needs (which often vary significantly, as in this example group).

At a local level, organisations could consider evidence from Joint Strategic Needs Assessment (JSNA) and other sources of data to estimate numbers of people with disabilities, sensory loss and / or communication needs in their area. Going forwards, commissioners may wish to make use of opportunities such as the JSNA to better understand the prevalence of disability and sensory loss, and the communication needs of their local population. Local collection and use of data regarding individuals with needs, and associated costs and benefits of meeting those needs – ideally across a local health and care economy – will be useful for future planning and evaluation purposes.

7. Note on meeting the needs of people who are d/Deaf or have hearing loss

a. National statistics on prevalence

According to Action on Hearing Loss “There are more than 11 million people in the UK with some form of hearing loss, or one in six of the population. By 2035, it is estimated that there will be 15.6 million people with hearing loss in the UK – that’s one in five. More than 900,000 people in the UK are severely or profoundly deaf… 24,000 people across the UK use sign language as their main language – although this is likely to be an underestimate.”

b. Communication support for people who are d/Deaf or have hearing loss

As these figures show, it should not – and must not for the purposes of compliance with the Standard – be assumed that all, or even most, d/Deaf people communicate using British Sign Language (BSL). British Sign Language (BSL) users represent a minority of the d/Deaf community. In reality, age-related damage to the cochlea – a result of a combination of environmental and genetic factors – is the single biggest cause of hearing loss. People who have experienced hearing loss later in life are more likely to communicate using written English, and by using hearing aids and lip-reading to support face-to-face communication.

This diversity of communication methods and approaches is one of the key reasons that the Standard reiterates the importance of identifying and recording people’s ‘needs’, rather than their ‘disability’. It is important to note that there are many things that all staff can do to support more effective communication with people with hearing loss, often at no cost, for example holding conversations in quiet areas, facing the person and ensuring their lips are visible, and offering alternatives to the telephone as a contact method (for many people who are d/Deaf or have hearing loss, email and / or text message are accessible options).

Organisations should note, however, that the Standard makes clear that professional communication support – such as British Sign Language (BSL) interpretation – must be provided (and funded) where it is needed to enable accurate, effective, dialogue to take place. Approximate costs for British Sign Language (BSL) interpretation (face-to-face) are £40-60 per hour with a three hour minimum call out fee plus travel expenses.

In addition, as many BSL users have a limited ability to read English, written information may need to be re-presented in BSL, either interpreted face-to-face or offered as a BSL video recording. The cost of producing a document of 600 words as a BSL video file (with a DVD copy and including subtitles) is approximately £300.

The Implementation Guidance (especially section 11.4.4) includes direction about assuring the competence of communication professionals, including ensuring that communication professionals working with d/Deaf or deafblind people, including BSL interpreters, are part of the National Registers of Communication Professionals working with Deaf and Deafblind People (NRCPD). It should be noted that the Standard includes other ‘communication professionals’ who work with d/Deaf and deafblind people, including lipspeakers, note-takers and speech-to-text-reporters.

c. Remote British Sign Language (BSL) interpretation

When British Sign Language (BSL) interpretation is needed to enable effective, two-way, conversation, video conferencing technology now enables this to be offered remotely or virtually – and for organisations to pay per minute (rather than per hour or session).

BSL video remote interpreting (VRI) also known as video interpreting, remote interpreting or virtual interpreting is an online service in which a BSL interpreter interprets via video software. It works using a computer and webcam, a smartphone or tablet. Provided through contract or on demand by a range of organisations, it enables a direct connection to an interpreter so that the d/Deaf person can sign to them what they want to say. The interpreter then speaks this to the hearing person (via video link) and signs back their (spoken) reply.

Remote BSL interpreting can be particularly useful in urgent or emergency situations, or when it is not possible to arrange for face-to-face interpretation, for example at short notice. The approximate cost of remote BSL interpretation is currently approximately £2.50 – £3.90 per minute (as part of an agreed contract).

Organisations should note, however, that remote BSL interpretation should not be seen as a full replacement for face-to-face interpretation. Remote BSL interpretation may be inappropriate for longer appointments or sensitive discussions about diagnosis or treatment.

When arranging remote BSL interpretation services, organisations must also ensure that interpreters meet the qualification and registration requirements as set out in the Implementation Guidance (section 11.4.4).

8. Note on meeting the needs of people who are blind or have visual loss

a. National statistics on prevalence

According to the Royal National Institute of Blind People (RNIB), “Almost two million people in the UK are living with sight loss. That’s approximately one person in 30. Sight loss affects people of all ages, but as we get older we are increasingly likely to experience sight loss. One in five people aged 75 and over are living with sight loss…It is predicted that by 2020 the number of people with sight loss will rise to over 2,250,000… There are around 360,000 people registered as blind or partially sighted in the UK.” It is estimated that between 4-5% of registered blind people in the UK read braille.

b. Accessible information for people who are blind or have visual loss

As these figures show, it should not – and must not for the purposes of compliance with the Standard – be assumed that braille is an accessible format for all, or even most, blind people.

Whilst braille is an accessible format for some blind people, most people who are blind or have visual loss rely on other formats, such as audio. In addition, the number of people requiring ‘hard copy’ braille versions of documents is decreasing – although ‘hard copy’ braille remains important for some blind people, especially older blind people, digital technologies have opened up more economical, and preferable, options for many (see below).  Similarly, fewer people require audio CD or DVD versions of documents – being more likely to be able to access these file formats via a website (assuming it is accessible to them). Both of these trends are likely to continue.

The advent of digital technology, and perhaps especially the smartphone, means that, for many people with a disability or sensory loss, email and text message are their preferred (and also the most effective, efficient and economical) communication formats and contact methods. For many blind people / people with visual loss use of email enables the recipient to use (their own) assistive technology or software, for example a ‘screen reader’ which converts text to speech (or to a refreshable braille display).

Although the accessibility of health and social care websites is excluded from the scope of the Standard, organisations are advised to consider maximising the accessibility of their website, including to users of assistive technology, as increasing web and digital accessibility will reduce (although never remove) the need to produce information in alternative formats.

Organisations are advised to ensure that websites comply with the World Wide Web Consortium’s (W3C’s) Level AA guidelines for accessibility and may find the British Web Accessibility Code of Practice: BS8878 a useful source of guidance. A helpful summary of the latter document has been published online by the digital inclusion charity AbilityNet  Organisations should also refer to accessibility guidance set out in the Government Service Design Manual and be aware that the minimum standard for HSCIC digital application or services is Level AA of the Web Content Accessibility Guidelines (WCAG) 2.0.

Where individuals require braille or audio formats, indicative costs for the production of a document of 600 words are £8 for an electronic audio file and CD, and £8 for braille. It is assumed that most services will be able to produce documents in larger font size in-house, meaning additional costs will only relate to the need for extra stationery.

9. Note on meeting the needs of people who are deafblind

a. National statistics on prevalence

According to Sense, “In 2010, the Centre for Disability Research (CeDR) produced a report commissioned by Sense that estimated the total number of people with sight and hearing loss in the UK, currently and in the future. As we age, our hearing and sight deteriorate. The CeDR report stated that the deafblind population is set to rise dramatically as there will be a higher percentage of older people in the UK. The report found: approximately 250,000 people who are deafblind in the UK; 222,000 of those people are aged over 70; 33,000 adults (age 20-69); 4,000 children (0-19yrs).”

b. Accessible information and communication support for people who are deafblind

Deafblind people use many different methods of communication and ways to access information.

A deafblind person may need support from a deafblind manual interpreter, who interprets between English and deafblind manual (a form of tactile fingerspelling). The approximate cost of deafblind manual interpretation is £35 per hour with a three hour minimum call out fee plus travel expenses.

Some deafblind people may need support from a British Sign Language (BSL) interpreter (see section 8.b.), who may need to be skilled in ‘hands on’ or ‘visual frame’ BSL. Remote BSL (as outlined in section 8.c.) may not be suitable.

A deafblind person may need information in an alternative format, such as braille, large print, audio or via email. Indicative costs for the production of a document of 600 words are £8 for an electronic audio file and CD, and £8 for braille.

Further information about communication support for deafblind people, including deafblind manual interpreters, is included in section 12.3 of the Implementation Guidance.

10. Note on meeting the needs of people with a learning disability

a. National statistics on prevalence

Research undertaken by Eric Emerson and Chris Hatton of the Institute for Health Research at Lancaster University estimated that there are a total of 985,000 people in England with a learning disability, a prevalence rate of 2% of the general population.

b. Accessible information for people with a learning disability

Although one of the most digitally-excluded groups, people with a learning disability are also increasingly accessing information online, including via social media and through self-advocacy groups. Consideration should, therefore, be given as to whether the presentation of information in a video or animation is an accessible format for some people with a learning disability, in addition to traditional ‘easy read’ documents. The inclusion of subtitles on videos and animations will ensure that they are accessible for people who are d/Deaf or have hearing loss as well.

High quality easy read documents can be commissioned from specialist easy read services across the country. The indicative cost for an externally-commissioned easy read document of 600 words, including creative input and coproduced with people with a learning disability, is approximately £1,050. However it would be best practice for teams to undertake training on producing their own easy read documentation, and establishing processes so that this is coproduced with people with learning disabilities, which would also reduce costs.

11.Note on achieving best value

It should be noted that significant savings in procuring alternative formats and professional communication support may be achieved through:

  • Block contracting arrangements;
  • Partnership agreements with local or national voluntary sector organisations;
  • Partnership approaches:
    • Enabling organisations to benefit from economies of scale, including ‘local health economy-wide’ arrangements and contracts;
    • Establishing one organisation as the ‘host’ or ‘hub’ provider / supplier of alternative formats to others;
  • Contracting for the provision of all interpreting / communication support / information services over a defined period, for example six or 12 months, rather than paying separately for each individual booking;
  • Production of templates or multiple copies of commonly used documents;
  • The use of automatic conversion technology for alternative formats such as braille and audio, including via online providers.

12. Note on costs of accessible information / communication support

In order to ensure equity and promote equitable access to services by people with a disability or sensory loss, organisations should be aware that it is their responsibility, and not that of the disabled person, to cover the costs of meeting an individual’s information and / or communication support needs. Guidance from the Equality and Human Rights Commission (EHRC) states that, “If an adjustment is reasonable, then the person or organisation providing it must pay for it. As a disabled person, even if you have asked for the adjustment, you must not be asked to pay for it.”

13. Conclusion

In conclusion, organisations may find the following ‘top tips’ helpful:

  • Do not make assumptions about people’s information and communication needs. Ensure that recorded needs are based on information from the individual themselves (or their parent or carer if appropriate). Make sure you review recorded needs on a regular basis (as they may change, and the best way of meeting those needs may change for the individual too).
  • Recognise that increasing numbers of people who have a disability or sensory loss will use email and text message as contact methods, and wish to access information online, if possible. Make sure you maximise the accessibility and use of digital communications methods.
  • Do not work alone. Contact other local health and care providers, and commissioners, to explore opportunities for partnership working and shared approaches, especially with regards to contracts for alternative formats and professional communication support.
  • View costs in the context of benefits, and efficiency savings, rather than in isolation. See the changes you make in the context of improving patient / service user care, and experience, as well as safety and quality.
  • Do not be afraid to celebrate success, and promote positive action – and ensure you include your patients and service users in recognising progress made.