• Information
• Publications
• Glossary
• Neurological centres
• Headstrong
• Information Access toolkit
  • About the Toolkit
  • Overview of the Toolkit
  • How to use the Toolkit
  • How this Toolkit was developed
  • Information is important
  • Section one: Setting up systems
  • Section two: Providing a named contact
  • Section three: Information about local services
  • Section four: Information on managing a condition
  • Section five: Information about social inclusion
  • Section six: Assessing information needs
  • Resource Pages
  • Reource page one
  • Resource page two
  • Resource page three
  • Resource page four
  • Resource page five
  • Resource page six
  • Resource page seven
  • Resource page eight
  • Resource page nine
  • Resource page ten
• Communication skills project

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Writing patient information is not as straightforward as it sounds, and is not necessarily a quick or cheap option. It can take some time to get it right and even producing a one page leaflet may take considerable time and skill if you are going to ensure that it is comprehensive and understandable to those who will use it. A big problem with patient information is the proliferation of materials and people “reinventing the wheel”.

Before embarking on producing your own information it might be useful to work through this checklist:

• Check with colleagues – they may have come across materials you are not aware of.
• Check with any organisation that produces information for this client group (e.g. MS Society, Parkinson’s Disease Society produce information on a wide range of topics and most of the smaller specialist organisations also produce information – contact details of organisations from Neurological Alliance website).
• Check with the Patient Information Forum (if you are a member you could post a question in the members discussion area or with “PiF aware”).

Is there a Trust or organisation policy providing guidance or rules for the development of information?
Check with your organisation’s patient information co-ordinator or manager (if you have one). You can also check with your local Patient Advice and Liaison Service (PALS).

Is there a need for this information in another form? For example, audio or video form? Are versions required in languages other than English?
Check with your organisation’s patient information co-ordinator or manager (if you have one). Again, you can check with your local PALS service.

Who else can help?
If there is nothing suitable elsewhere and you want to produce your own material, there may be people in your Trust or other local organisations who can help:

• Many NHS Trusts now have patient information managers or officers – they may be based with the Patient Advice and Liaison Services (PALS). To find your local PALS, visit www.pals.nhs.uk. The Patient Information Officer may be able to help you with:
  - writing the information in a user-friendly way
  - quality-assuring the information to make sure that it meets the requirements and standards of CNST and the Healthcare Commission
  - access to designers and illustrations
  - printing the material.
  
  They may also have access to a readers panel who can provide feedback on how easy the information is to understand, or they may be able to advise you on setting up a panel to check your information with the relevant client group.
• Within a local council you could contact the officer with responsibility for public information/communications in your department or your organisations corporate marketing/communications team. They may be able to advise on style and how to reach your target audience.
• Local branches of patient support organisations (e.g. MS Society, Motor Neurone Disease Association, Epilepsy Action, Parkinson’s Disease Society, Headway) may be very willing to help ensure the information is relevant and understandable to the local population.
• Patient Information Forum website.
• Local translation services (see Section Four – LINK UP).
• If you plan to use pictures the NHS photo library has thousands of images to download. (You will need to register as a user).

Are there sources of funding I could use locally or nationally?
If you are considering getting funding to produce the material, you should check with any local policies about sponsorship. Pharmaceutical companies may have funding available which has to be provided under the terms of their Code of Practice.

If you decide to go ahead with producing a piece of written health information
The following is a summary of the many good practice guidelines available:

• Actively involve patients in the development and evaluation of information materials.
• Before preparing materials, consider the information needs of the target population.
• Write in plain English and at a reading level which is suitable for the target population (see PiF website for how to test this).
• Materials should reflect cultural diversity and be made available in non-English languages.
• Information should be written in “clear print” – a system developed by the Royal National Institute of the Blind (RNIB) to ensure that it is accessible to partially sighted people. The RNIB's See it Right pack is a useful guide to producing information.
• Information should be accurate and, non-biased and include a clearly stated evidence-base.
• Language should not be alarmist or patronising. It should be in the active voice.
• Avoid the use of acronyms, technical jargon and long words where possible – explain medical terms.
• Use illustrative diagrams and other visual aids where possible.
• Present information in short blocks of text. Use question and answer formats and bullet points to break up text.
• Include a publication (or review) date so that readers can gauge whether information is up to date.
• Provide a list of contacts where readers can get further information if required.
• Make information available in a variety of mediums and from a range of sources.