Chapter 5: Communication, psychological wellbeing and safeguarding
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Pre‐procedural considerations
Written patient information
Patient information in this context refers to information about disease, its treatment, its effects and its side‐effects, and the help and support available to people living with a chronic condition, their relatives and carers. When writing information for patients and carers, consideration should be given to information already available on the chosen topic. The purpose of the information may be to:
- address frequently asked questions
- inform about a treatment or service
- reduce anxiety
- give reference material.
Ideas about new patient information should be shared with other members of the team or clinical unit, and patients and carers involved, from the outset. The content of the material should be accurate and evidence based and meet the current Department of Health and Social Care and NHS Litigation Authority requirements.
Within each part of the UK there are significant proportions of adults who lack basic literacy skills (England: 14.9%; Northern Ireland: 17.9%; Scotland: 26.7%; Wales: 12%) (National Literacy Trust [191]). When writing information, everyday language should be used (as if speaking face to face) and jargon should be avoided. However, there is no need to be patronizing or use childish language. The Plain English Campaign ([224]) offers a downloadable guide entitled How to Write in Plain English.
When producing written information for patients, it may be worth considering accessibility for patients who are non‐verbal or have a learning disability. An easy‐to‐read information resource with pictures, images and few words can support people with learning disabilities to have a greater understanding of information and support their decision making. The Department of Health ([71]) has produced a guide called Basic Guidelines for People Who Commission Easy Read Information.
Information should be dated and carry a planned review date. Sources of information should be acknowledged. This gives the reader confidence in the material.
The provision and production of information must take into account diversity in ethnicity, culture, religion, language, gender, age, disability, socioeconomic status and literacy levels, as stated in the Department of Health publication Better Information, Better Choice, Better Health ([64]).
Information should be ratified according to local trust policy. Where a trust does not produce patient information materials to meet specific patient needs, suitable alternative sources of information should be sought.
Other sources of information
Patients and their families may benefit from information and support available in the wider community, away from the environment of statutory health services. Sources of additional information include:
- Disease‐specific national charities, for example the National Multiple Sclerosis Society or the British Heart Foundation: these organizations produce written materials in booklet and factsheet format, as well as having websites.
- ‘Illness memoirs’, internet blogs and digital stories (e.g. www.patientvoices.org.uk): personal accounts are easily accessible online and through bookstores. It may help patients to hear other people's stories as this can reduce the sense of isolation and powerlessness and promote hope (Chelf et al. [46]). It must be borne in mind that not everyone will benefit from these sources of information.
- Peer support: the therapeutic benefits of groups are extensively documented (NICE [201]) and most support charities have a directory of local and national groups available.
