References

Action on Hearing Loss. Access all areas?. 2013. https://tinyurl.com/yc32rar4 (accessed 17 October 2022)

Care Quality Commission. University Hospitals Birmingham NHS Foundation Trust pays fixed penalties of £8,000 for failures around consent. 2022. https://tinyurl.com/byu45yz7 (accessed 17 October 2022)

NHS England. Accessible information standard. 2017. https://tinyurl.com/58aczmem (accessed 17 October 2022)

Nursing and Midwifery Council. The code. 2018. https://tinyurl.com/5y8edykx (accessed 17 October 2022)

Re MB (Caesarean Section). 1997;

Re W (A minor) (Medical treatment court's jurisdiction). 1992;

SignHealth. Sick of it: A report into the health of deaf people in the UK. 2014. https://tinyurl.com/mv59d7ze (accessed 17 October 2022)

Consent and the requirement for accessible information

27 October 2022
Volume 31 · Issue 19

Abstract

Richard Griffith, Senior Lecturer in Health Law at Swansea University, considers the importance of accessible information when obtaining consent from patients

The right to dignity and choice means that touching an individual is limited in law with an initial presumption that it must not occur without consent. In Re W (A minor) (Medical treatment court's jurisdiction) [1992] Lord Donaldson held that consent had two purposes, one clinical and the other legal.

The clinical purpose recognises that the co-operation of the patient and the patient's confidence in the treatment and care is a major factor in its success. Failing to obtain consent will not only deprive the patient and the nurse of this advantage, but will also make it much more difficult to administer treatment and care.

The legal purpose is to provide a defence to a criminal charge of assault or battery or a civil claim for damages for trespass to the person.

The right to self-determination

The law recognises that adults have a right to determine what will be done to their bodies (Re MB (Caesarean Section) [1997]). Touching a person without consent will amount to a civil trespass to the person or, rarely, a criminal assault. Bodily integrity is held in very high regard by the law. Unlike other civil wrongs, such as negligence, which requires harm, any unlawful touching is actionable even if done with the best of motives. As Lady Butler-Sloss stated in Re MB (Caesarean Section) [1997]:

‘The right to determine what shall be done with one's own body is a fundamental right in our society. The concepts inherent in this right are the bedrock upon which the principles of self-determination and individual autonomy are based. Free individual choice in matters affecting this right should, in my opinion, be accorded very high priority.’

These long-established common-law principles are reflected in the Mental Capacity Act 2005 section 1, which promotes autonomy through an initial presumption that a person has capacity to make decisions unless a nurse can show otherwise.

The Nursing and Midwifery Council (NMC) Code (2018) requires nurses to obtain consent from their patients. Standard 4.2 requires nurses to:

‘Make sure that you get properly informed consent and document it before carrying out any action.’

Standard 4.3 requires nurses to:

‘Keep to all relevant laws about mental capacity that apply in the country in which you are practising.’

NHS trusts in England are also required by the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014, regulation 11, to only provide care and treatment to service users with consent or in accordance with the Mental Capacity Act 2005.

Enforcement of the 2014 regulations

The enforcement of the 2014 regulations is undertaken by the Care Quality Commission (CQC) in England, which has the authority to:

  • Use requirement notices or warning notices to set out what improvements the care provider must make and by when
  • Make changes to a care provider's registration to limit what they may do, such as imposing conditions for a given time
  • Place a provider in special measures, where the CQC closely supervises the quality of care while working with the organisation to help them improve within set timescales
  • Hold the care provider to account for their failings by issuing simple cautions, issuing fines or prosecuting cases where people are harmed or placed in danger of harm.

Breaching consent requirements

The CQC recently took enforcement action against a hospital trust in England for failing to meet the consent requirements of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014. The trust was issued with fixed penalty notices amounting to some £8000 for failures in relation to a patient with complex health needs, including autism and a hearing impairment (CQC, 2022).

The CQC investigation found that the hospital trust had denied the man the opportunity to make decisions about his own care because the trust assumed he did not have capacity because of his communication needs. The trust did not undertake a sufficient assessment of the man's mental capacity or attempt to support his communication through the use of a British Sign Language interpreter or consultation with the person appointed under his lasting power of attorney. The CQC also found the situation had been made worse by poor record keeping (CQC, 2022).

Accessible Information Standard

The CQC found that the main cause of the hospital trust's failings was assuming the man lacked capacity because he had different communication needs from others. The hospital trust might have avoided enforcement action had it adhered to the NHS England (2017) Accessible Information Standard, which defines a specific, consistent approach to:

  • Identifying
  • Recording
  • Flagging
  • Sharing and
  • Meeting the information and communication support needs of patients, service users, carers and parents, where those needs relate to a disability, impairment or sensory loss.

The aim of the standard is to establish a framework and set a clear direction that ensures patients who have information or communication needs relating to a disability, impairment or sensory loss receive:

  • Accessible information – information that is able to be read or received and understood by the individual or group for which it is intended
  • Communication support – the support needed to enable effective, accurate dialogue between a professional and a service user to take place (such that they are not put at a substantial disadvantage in comparison with persons who are not disabled when accessing NHS or adult social services).

This includes accessible information and communication support to enable individuals to:

  • Make decisions about their health and wellbeing, and about their care and treatment
  • Self-manage conditions
  • Access services appropriately and independently
  • Make choices about treatments and procedures, including the provision or withholding of consent.

Simply recording that a person is ‘deaf’ does not explain whether they are able to read written English, if they use British Sign Language (BSL) or are a lipreader and/or hearing aid user. Assumptions about communication support or the alternative formats required, or any recording of needs, must not be made without consultation with the individual themselves.

Law underpinning the NHS accessibility standard

The Equality Act 2010 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 with a person who is not disabled. The 2010 Act requires the provision of information in an accessible format as a reasonable step to be taken.

The Care Act 2014 places specific duties on local authorities to provide advice and information that must be accessible to, and proportionate to the needs of, those for whom it is being provided.

Professional bodies and the CQC as a statutory regulator require nurses to support communication and/or understanding and to take reasonable steps to meet people's language and communication needs by providing assistance to those who need help to communicate their own or other people's needs. This would be by using a range of verbal and non-verbal communication methods.

The need for accessible information is highlighted by the charity Action on Hearing Loss (2013) (now the Royal National Institute for Deaf People), which found that:

  • 28% of people with hearing loss were unclear about their diagnosis
  • 19% were 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.

SignHealth (2014) found that BSL users had worse health outcomes than the general population, which cost some £30 million a year to the NHS.

Steps to take to ensure information is accessible

  • Ask: find out if an individual has any communication or information needs relating to a disability or sensory loss and, if so, what they are
  • Record: record those needs in a clear, unambiguous and standardised way in electronic and paper-based records, administrative systems and documents
  • Alert, flag and highlight: ensure that recorded needs are highly visible whenever the individual's record is accessed, and prompt for action
  • Share: include information about individuals' information and communication needs as part of existing data-sharing processes
  • Act: take steps to ensure that individuals receive information that they can access and understand, and receive communication support if they need it (NHS England, 2017).

Conclusion

Consent is the legal expression of the ethical principle of autonomy and is the bedrock on which effective, patient-centred care is based. Nurses must promote the self-determination of their patients by presuming capacity and obtaining consent before proceeding with treatment. This includes those patients who have communication and information needs.

The NHS Accessible Information Standard aims to ensure that patients with communication and information needs receive support to enable them to make their own decisions about their health care, including support to give informed consent to their care and treatment. An NHS hospital trust that failed to meet the communication needs of a patient, resulting in staff assuming the patient lacked capacity to consent, was issued with fixed penalty notices by the CQC, amounting to some £8000. It is essential, therefore, that nurses ensure the communication needs of their patients are met and that they provide treatment and care only with consent to protect the rights of their patients and comply with the requirements of the NMC Code (2018), the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 and their duties under the common law.

KEY POINTS

  • The right to dignity and choice means that touching an individual is limited in law with an initial presumption that it must not occur without consent
  • The Care Quality Commission recently took enforcement action against a hospital trust in England for failing to meet the consent requirements of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014
  • The NHS Accessible Information Standard requires nurses to support a person with communication and information needs to make decisions about their health and wellbeing, and consent to treatment