Accessible Information Guidance… · Author ensures that draft/reviewed resource is circulated for feedback by stakeholders, service users, carers, clinicians. Resource is amended

Cumbria, Northumberland Tyne and Wear NHS Foundation Trust 1 CNTW(O)03–Production of Accessible Information for Patients, Carers and Public –V04.5 – Apr 2020

Accessible Information Guidance

CNTW(O)03 - Appendix 1

Developing Patient and Carer Resources


Contents Page 1. Flow Chart – Patient, Carer and Public Resources 3 2. Production Checklist 4-6

3. Information Policy Statement 7

4. Resource Questionnaire 8-9

5. Resource Questionnaire – Easy read 10-12

6. Accessible Information Guidance – for information 14-20

7. Writing for different situations – for reference only – these do not have

to be submitted with the resource o Checklist for information about operations, treatments and 21

investigations o Checklist for information about conditions and treatments 22 o Checklist for writing information about services 23 o Checklist for writing information about medication for patients 24 o Checklist for writing easy to read information 25


New/Review of Resource Flow Chart – Patient, Carer and Public Resources

Author of Resource Develops resource using the standards set out in ‘CNTW Accessible Information Guidance - developing

patient carer and public resources’. Completes the ‘Production Checklist for the Review and Approval of Patient and Carer Information Resources’ – available from the Patient Information Centre (PIC) 0191 246 7288 or on the website CNTW(O)03 appendix 1

Author ensures that draft/reviewed resource is circulated for feedback by stakeholders, service users, carers, clinicians. Resource is amended as per feedback

Author forwards final draft leaflet, completed production checklist and user feedback to Patient Information Centre

Patient Information Centre Patient Information Centre staff are available for advice regarding the process and will format resource.

Receives all patient/carer information resources for approval

Staff will check paperwork, advise on wording and layout, ensuring that the resource complies with the requirements of The Information Standard

Patient Information Centre staff scans all paperwork and emails to Associate Director for approval

A monthly report of all approved and 3 year review resources will be sent to each Group Nurse Director for information and action.

Associate Director Receives completed paperwork and final draft resource from the Patient Information Centre.

Reviews information, any discrepancies will be raised with the author and the above process repeated.

Associate Director to approved for:

South Locality Care Group

North Locality Care Group

Central Locality Care Group

Trustwide Resources – Trustwide Patient and Carer Experience Group

Any issues are fedback to the Patient Information Centre, the resource may then be amended due to feedback.

The Associate Director approves the resource and returns all paperwork to the Patient Information Centre.

Resource Ratified by Group PIC staff will send resource proofs and ‘Proof

Sign Off Authorisation Form’ to the author to approve and return to the PIC

Resource is given a unique reference and version number

Resource is made available in A4, A4 Large print and A5 formats and is uploaded to the PIC website in pdf format

Author is emailed links to the resource when resource is uploaded to the PIC website www.CNTW.nhs.uk

Author is responsible for making copies of the resource or obtaining quotes for professional printing if required in large volume

Information Resource Not Ratified

Informs author and PIC staff of decision and reasons why the resource has not been ratified. Highlights areas for improvement and provides advice and guidance

Author revises resource and repeats consultation process

Patient Information Centre

Updates ‘CNTW Publications Record’ and website database

Hard and electronic copies of the resource are held centrally at the PIC along with the ‘Production Checklist for the Review and Approval of Patient and Carer Resources’, ‘Proof Sign Off Authorisation Form’ and evidence of consultation/research.

Can supply contact details of printers for professional printing of resources if required. (Funded by author)

Resource will be flagged for review with the author a minimum of every three years

Author reviews resource and completes paperwork


Production Checklist For the Review and Approval of Patient and Carer Resources

To be completed by the service/team and attached before the patient information leaflet is submitted to the Patient Information Centre for consideration and approval.

Title of resource being developed/reviewed:

Title:

Type of Resource

Service Information

Treatment Condition Rights Other (please list)

Please circle group Associate Director:




Corporate (Trustwide)

information applies to all groups

Comments

1. Target Audience

Who is your target audience? Patients Carer/Relative Public Other

What is the aim and purpose of the resource?

What is the preferred format of your target audience? Please circle

Leaflet Audio Other format* please state (charges may apply)

2. Development Process Comments

What relevant expertise has been used? Eg. Clinicians (please include names and job titles) evaluated websites, research, literature search.

Please state where information was obtained/referenced.

References/statistics Must be based on current evidence and referenced at the end of the resource and peer review checked.

Peer review is required to ensure the content, context and quality of the evidence within your information is suitable. Peer reviews must be undertaken for each resource by a member of staff with equal/specialist expertise.

NB. It is a requirement of The Information Standard that resources about conditions and treatments contain evidence based information.

List references Expert Peer Review * please sign the conflict of interest section

Name Job title and relevant expertise

Details of literature search/reference checked

Date peer review was undertaken


CNTW Library and Knowledge Services are available to support you to carry out literature searches contact [email protected] to request literature search training. Please see the following documents. Literature Search Request Form

Literature Search process: Guidance for NHS Researchers Guidance

Please attach evidence of consultation with service users. A questionnaire to help you to obtain this evidence is available at the end of this checklist. There is a general/easy read version

Leaflets will not be progressed unless evidence is available.

Please attach evidence of consultation with stakeholders where appropriate, if not applicable please state.

Stakeholders consulted Not applicable Attached evidence

Please explain who was involved in the

consultation process and why eg service users, carers, stakeholders, other professionals

Who:

Why:

3. Content Yes/No/NA

Is the title and objective of the document clear?

Is the content clear and unambiguous?

Does it help people make decisions by giving them all the facts, including risks, side effects and benefits? (condition and treatment leaflets only)

Does it contain author’s personal opinions?

If yes – to be ratified at Caring Group

Does it avoid jargon and acronyms?

Is evidence based research referenced at the end of the resource?

Sources of alternative care/treatment options are clearly stated? (where applicable)

Does it tell people what other information, resources and support is available?

Conflict of interest – do you/and or the peer reviewer have any conflict of interest relating to this resource?

Please refer to policy CNTW(F)07-01

No / Yes - please provide details:

6. Review Date

This resource will be reviewed within three years from the approval date. The Patient Information will flag with author.

Is the above review date acceptable? Yes / No

7. Overall Responsibility for the Document

It is clear who will be responsible for co-ordinating the dissemination, implementation and review of the resource?

Named contact:

8. The Information Standard Policy Statement

mailto:[email protected]


I am aware of, have read and comply with the Trusts Information Standard Policy Statement – policy statement attached.

Name/signed: Date:

9. Policy for producing patient/carer information

I am aware of, have read and comply with the Trusts Policy for ‘The Production of Accessible Information for Patients, Carers and the Public CNTW(O)03 – available on the intranet

Name/signed: Date:

Completed by (please print): Date:

10. Final draft approval You must ensure that you are in receipt of the following information prior to approval

Name: Date:

Authorised by

Associate Director –


Associate Director


Associate Director


Chair, Trustwide Q&P

Caring group

Production checklist

User Consultation

Draft Resource

Please return to the Patient Information Centre, SNH together with evidence of service user consultation.

If you have any queries please contact: Barbara Charlton, Senior Information Officer - Ext 59438 Cody Walker-Scott, Information Officer - Ext 59439 Karen O’Rourke, Patient Information Centre Manager - Ext 59440

Supporting Information

The Production of Accessible Information for Patients, Carers and the Public CNTW(0)03

Production Checklist for Review and Approval of Patient and Carer Resources

CNTW Accessible Information Guidance

Corporate Identity Guidelines

Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust - Editorial style guide

Patient Information Centre – internal checks prior to resource being sent to service manager to agenda.

Proof Read Free from medical jargon/ Acronyms

Evidence is checked

Evidence is clearly

signposted

Information Standard Logo

Initials: Initials: Initials: Initials: Initials:

Date: Date: Date: Date: Date:


Information Standard Policy Statement

Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust are committed to providing quality health information for service users and carers of the Trust which include the following services:




North Cumbria Locality Care Group

Trustwide information resources – Trustwide Q&P Caring Group The Trust aims to produce high quality information following strict guidelines and ensure that staff are fully aware of the process for producing patient/carer information resources. We have in place the following documentation:

Policy CNTW(O)03 - ‘The production of Accessible Information for Patients, Carers and the Public’

o Appendix 1 – Developing a Patient Information Leaflet o Appendix 2 – Core Resources

Trust Identity Guidelines We are committed to:

Ensuring that our patient information production system and information staff meet the requirements of The Information Standard.

Consulting with service users/carers when producing information.

Producing good quality information, using Plain English and specialist packages where needed.

Having a central department for advice and ratification of resources.

Maintaining records to show that staff involved have received the policy statement and are aware of the implications.

Ensuring that all staff involved in the production of patient and carer information are aware of, and comply with the policy statement and the requirements of The Information Standard.

Maintaining a database of approved information resources.

Reviewing resources with authors a minimum of every three years. By adopting The Information Standard we aim to:

Help service users and carers make informed decisions about their healthcare, treatment and rights

Assure service users, carers, and health care professionals that the information produced by the Trust is up-to-date, reliable and is evidence based

Enhance the reputation of the Trust

Maintain and improve our information production system of health information. Our commitment to The Information Standard Accreditation Scheme has the full support of the Chief Executive and the Senior Management Team. The responsibility for ensuring the Trust complies with the standards lies with the Communications Lead.


Resource Title: __________________________________________

Are you (please circle): Patient Carer/Relative Public Other

Resource Questionnaire

We would like to know what you think about our service, your views will help us to know how we can make this service better. Our service does not currently have an information leaflet explaining who we are and what we do. We have put one together and before it can be published we need to make sure that you can understand it and includes relevant information. We would be very grateful if you would take a couple of minutes to read the information leaflet and answer the following questions as well as leaving any comments you may have.

Was the leaflet easy to understand? Yes No

Comments……………………………………………………………………………………………………………………………………………………………........................... ………………………………………………………………………………………….....

Was there any of the wording that you were unsure of or didn’t know what it

meant? Yes No

Comments…………………………………………………………………………………………………………………………………………………………….…………………. …………………………………………………………………………………………......

Authors comments:

Authors comments:



Did it fully explain what can be expected when you attend our service?

Yes No

Comments…………………………………………………………………………………………………………………………………………………………….…………………. ……………………………………………………………………………………………..

Was it informative and did you find it useful? Yes No

Comments………………………………………………………………….………….….…………………………………………………………………………..………………… …………………………………………………………………………………………….

(Author - the following question can be amended/deleted if not applicable to the resource)

Would it have been helpful to have received this information leaflet with

your first appointment letter? Yes No

Comments……………………………………………………………………………………………………………………………………………………………………………….. ……………………………………………………………………………………………..

Are there any changes that you would make to this leaflet? Yes No

Comments…………………………………………………………………………………………………………………………………………………………………………...…………………………………………………………………………………………..............

How would you prefer to receive this information?

Leaflet Audio Other formats (please list below) …………………………………………………………………………………………...…………………………………………………………………………………………..…….………………………………………………………………………………………………

Thank you very much for your help, your opinion is really important to us.

Thank you very much for your help, your opinion is really important to us.

Note to authors * Please feel free to adapt the resource questions to suit your publication.

* Authors must respond to any feedback, amending the resource where required before submitting for approval

Authors comments:

Authors comments:

Authors comments:

Authors comments:

Authors comments:


Resource Questionnaire

Leaflet Title___________________________________

1. What do you like about the leaflet?

Comments

Author’s response

2. What do you not like about the leaflet?

Comments

Author’s response

3. Can you understand the words?

Comments

Author’s response


4. What do you think of the pictures?

Comments

Author’s response

5. What do you think the leaflet is about?

Comments

Author’s response

6. What else do you think should be in the leaflet?

Comments

Author’s response

* Authors must respond to any feedback, amending the resource where required before submitting for approval


Is there anything else you would like to tell us about the leaflet?

If you have helped someone to complete this questionnaire would you please tell us:-

1) How well the leaflet helped you to get the message across

2) Any other comments/suggestions/ideas


The following information is for guidance only and does not need to be completed.

Staff at the Patient Information Centre will ensure that all accessible information guidance is followed. The following information is for advice and information only.


Accessible Information Guidance

1. Information

Information is central to health care. A lack of information means that people cannot make real choices and can be damaging for service users, their relatives, paid carers and health professionals. Good accessible information means that both service users and carers are better equipped to:

Improve their health and quality of life

Take more responsibility

Act as equal partners in care

Be aware of treatments and risks 2. Who needs accessible information?

Everyone needs accessible information however significant numbers of people with a disability find it difficult to read the ‘average’ information available from most service providers. As a disability service we have a social responsibility to ensure that people who use our services have access to information in formats that are appropriate to their needs. This is not optional; the Disability Discrimination Act 2005 states that information needs to be presented differently in accessible formats. 3. Principles of good communication

o Clear – so it can be understood o Straightforward – using fewer words and keeping to the necessary

information o Modern – using everyday language and current images o Accessible – available to as many people as possible, avoiding jargon,

up to date and given to the patient at the appropriate time o Honest – information should be based on current evidence o Respectful – sensitive to cultural needs of all people, avoiding

stereotypes

4. Three Core Principles:

In considering the development of accessible information there are three key principles to consider before getting started:

Know your audience

Thinking about your intended audience and its abilities and needs is the key to producing accessible information.


Relevant information

Ask what information is relevant to your intended audience, cut out any confusing or unnecessary detail whilst making sure the essential information is very clear. Be prepared to ‘do whatever it takes’ This means using a variety of formats to get across your message; The same information: can be written, placed on audiotape, DVD and the internet. Take time to find the words, sounds and images that best support and explain your message. Most importantly involve the intended audience and the people who know them well and support them.

5. Accessible Text Points to consider when producing information Format

Type Size

o 12 point type; should be the absolute minimum used in the production of information.

o 14 point type is even easier to read.

o 18 point will reach most people with a visual impairment.

o 24 point print is easier to read than any of the other sizes.

Remember to ask the service user what would be their preferred point size.

Bold print

Bold style is more accessible than normal text.

Italics

o Avoid italics. Italicised text is difficult to read for many people


Typeface or font

o Only use Arial – do not use fancy fonts such as Monotype Corsiva.

Contrast

o The clearest form of print is black on white or black on yellow.

o Sometimes a white background can cause a glare, a yellow background reduces glare.

o Contrast which is reversed – white print on a black background is a good way of emphasising headings.

Spacing

o Leave the right margin unjustified, paragraph clearly so that separate pieces of information can be identified from each other.

o Example Do not stretch words to fit the length of the line as this can create uneven spacing.

Columns

o Columns should be avoided where possible.

o If you do have to use columns always leave a clear space or a line between – as many people mistakenly read straight across from one column to the other.

Paper

o Use good quality plain paper so that the print cannot be seen from the reverse side.

Capital Letters

o Capital letters are more difficult to read than lower case letters. Avoid using capital letters in heading or emphasising SUCH AS THIS.

o It is much better to use bold text or boxing in order to highlight something

Underlining

o Do not underline text as it prevents people reading the shapes of words

Illustrations

o Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust logo should appear on the top right hand side of the document.

o Illustrations, images, logos other than CNTW should not be used, unless this is


felt to aid understanding of content and must be discussed with the Patient Information Centre on each occasion.

Design and layout

o Design should be kept simple, so that it is easy to access – A5 and A4 are the best formats.

General points to follow:-

o Always provide a contents page

o Clearly number each page

o Keep titles and headings clear

o Keep information in a logical order

o The start of new sections should be made clear

o Do not cram lots of information on the one page, as this can deter people from starting to read the text

o Include the date of the publication

Numbering

Spell the numbers one to ten. The numbers 1, 3, 5, 6, 8, 9, 0 can easily be confused in some fonts.

If you are writing for people with a disability always use the number and not the word even for small numbers. Try to use percentages for large numbers. You could say a ‘few’ for 7% and ‘many’ instead of 1,552.

Content

Clear English

o It is important to use straightforward language when providing information.

General points to follow:- o Use short sentences o Use full stops rather than semi-colons o Be concise o Avoid jargon – avoid technical terms o Concentrate on one subject at a time o Do not use the third person – use ‘you’ frequently o Use active verbs e.g. ‘Information is available at’ rather than ‘Information can

be obtained from’ o Avoid using ‘he’ or ‘she’ and use ‘they’ instead


o Keep terminology clear without being patronising o Obtain feedback from service users before producing the publication.


Good Information Provision Checklist

o Type size 12 point at least

o Bold style is more accessible that normal print

o Arial

o Avoid using capital letters

o Size of document – A5 or A4

o CNTW logo only – no clipart, images – seek guidance from the Patient Information Centre o Use plain paper – white or yellow

o Contents page

o Number pages

o Use Plain English

o Paragraph clearly

o Keep titles, headings and paragraphs clear

o Keep message short

o Information in a logical and clear order

o Consult with the audience about content


General Guidance

• When writing information for patients, try to write from the patient's point of view and put yourself in the place of someone who may have little knowledge of what you are talking about.

• Cut out unnecessary detail. Present the important information in a logical

sequence, one step at a time.

• Use short sentences. • Do not use semicolons or hyphens. • Use everyday language. Avoid jargon and acronyms, and use plain

language to make it easier to read. • Use patient-friendly text. Talk to your reader directly using 'we' and 'you'. If

you do have to use difficult words, give an explanation. • If you are writing for people with a disability always use the number and

not the word even for small numbers. Try to use percentages for large numbers. You could say a ‘few’ for 7% and ‘many’ instead of 1,552.

• Pictures, symbols, images and diagrams to aid understanding of content are helpful particularly for children and people with a learning disability however any images used should be in line with NHS guidelines rather than cartoon drawings or clip art.

• Supporting plain English text with images is one of the best ways to make

writing easier to understand. • If you are working with people from different ethnic minority groups you will

need to seek advice from the appropriate translation services. Seek guidance from the Patient Information Centre.

• Information should be in context with other information given to patients,

for example, letters, leaflets and appointments. • Reinforce the information that patients have already been given, be

consistent, use the same words and phrases consistently even if it sounds repetitive.

• Do not say, for example, 'do not eat anything for six hours before a

treatment’ - explain why.


• Be helpful. Help people make decisions by giving those facts about the

risks, side effects and benefits. • Do not confuse people by covering several treatments and conditions in

the same leaflet. • Tell people what other information, resources and support is available. • Be up to date. Give the most recent practice, local contact and latest

phone numbers. If you are using a local contact refer to the professional’s position and not the named person as they may move on.

• Let people know if the information is available in other formats, for

example, on CD.


Writing for different situations

The following checklists give a list of subheadings that you should consider when putting a resource together. These are not a complete checklist and some things may not be appropriate for certain information resources however, it will probably be relevant in most cases.

Checklist for information about operations, treatments and investigations

Heading/subject Tick

What is the resource about and who is it for?

What is the procedure?

Why are they having it? Give the benefits and alternatives where appropriate.

What preparation do they need or not need?

Do they need a general anaesthetic, sedation or local anaesthetic?

What happens when they arrive at the hospital or the clinic, and who will they meet?

Will they be asked to sign a consent form or is verbal consent needed?

What does the procedure involve? How long does it last? What does it feel like?

What happens after the procedure - pain control, nursing checks, stitches

How long will they stay in hospital?

Do they need someone with them or any special equipment when they go home?

What care do they need at home?

What follow-up care is needed? Do they need to visit their doctor?

What can go wrong, what signs to look out for and what to do if something goes wrong

When can they start their normal activities again, for example, driving, sport, sex or work?

Who can they contact if they have any more questions?

Tell people where they can find more information, for example, support groups and websites.


Checklist for information about conditions and treatments Heading/subject Tick

What is the resource about, and who is it for?

What condition is being described?

What causes it? Or, if the cause is not known, say so.

Does anything increase the risk, for example, age, sex, ethnic origin or a family history of the condition?

What are the signs and symptoms?

Are there any tests or examinations needed to confirm the diagnosis?

What treatments are available? Give brief descriptions

What are the side effects and the risks of getting treatment or not getting treatment?

What are the next steps?

What can patients do for themselves?

Are there other implications, for example, infecting other people?

Who can they contact if they have any more questions?

Say where the patient can find more information, for example, support groups and websites.


Checklist for writing information about services


Describe the service and its role.

Start at the beginning where the patient would start, for example, a resource about transport might start with how to book it with a phone number.

Details of how to access the service.

Directions on how to find it.

When is a service available/opening hours?

Is there a waiting time/appointment systems?

Who to contact if they cannot attend.

What is or is not available.

Benefits of treatment offered

Side effect of medications/treatment used

Risks of any procedures (e.g. ECT etc)

Any interpreter’s available if needed?

Are any costs involved?

Are there any environmental factors that need to be explained e.g. fire alarms, entry systems, mealtimes etc

A phone number, website and address of the organisation

For further information - contact and when.

Useful organisations, helplines, websites.


Checklist for writing information about medication for patients


Explain that any information that is given in a resource should be read with any patient information leaflet provided by the manufacturer

What medication are you describing and what is it for?

How is it taken?

How often should it be taken?

What should be avoided or added when taking a particular medication, for example, certain foods

What are the side effects and how should they be managed? Make sure that you mention that everyone is different so may react differently to medication

What to do if medication is not taken as intented.

Remind patients to tell the clinician who prescribes the medication about any other medication they are taking

Advice on storing medication

Advice on where to get repeat prescriptions

A contact number (of the pharmacy, named professional or care coordinator, doctor or NHS 111) for more information and to check on any concerns about side effects. Also include the CNTW Pharmacy Medicines Helpline number Tel: 0191 245 6604


Checklist for writing easy to read information

Making good, clear easy read information is essential.


Easy words

Use easy words that people use all the time.

Avoid 'jargon'.

If you must use a difficult word, make sure you explain what it means.

Short sentences

Aim for 15 words or less per sentence, with one idea in each sentence.

Put no more than 4 or 5 sentences together in each paragraph. Even less if you change subject.

It can actually be helpful to start sentences with words like 'and', 'but' and 'or' as this breaks text into smaller chunks.

Layout and pictures

The Patient Information Centre will draft your leaflet into the approved corporate style.

Leaflets and posters will be produced in a simple layout, pictures on the left hand side, and the words on the right.

Pictures, drawings, symbols will be used alongside words to help make ideas easier to understand.

Fonts and point size

Use Arial or Helvetica.

Headings in 19 and text in 17 point.

Use active, not passive verbs

Information is much easier to understand if it's written with active verbs. An easy way to do this is to write in the order (1) subject, (2) verb, (3) object. For example, 'Pete answered the phone'. Passive writing is the other way round - (1) object, (2) verb, (3) subject, as in 'The phone was answered by Pete'.

Get information down to size

Some information will be more complex than others. Think about what your reader needs to know and cut out any unnecessary content.

Map it out

A lot of people make the mistake of just translating a complicated document without thinking about the information structure. This can lead to many of the complexities of the original document ending up in the easy read version.

Take some time to plan the flow of information.

Group similar topics together, and draw a quick outline of how you'll arrange the different points.

Documents

Accessible Information Guidance… · Author ensures that draft/reviewed resource is circulated for feedback by stakeholders, service users, carers, clinicians. Resource is amended