Easy read report of engagement activity - NHS England€¦ · easy read, BSL and social media. A...

Making health and social care information accessible

November 2013 - February 2014

Easy read report of engagement activity

From mid-November 2013until 21 February 2014 NHSEngland invited the views ofpeople to help develop anew accessible information standard.

2NHS England Engagement Activity ReportNHS England Engagement Activity Report

ExecutiveSummary1

A range of individuals, groupsand organisations were ableto share their experiencesand put forward suggestionsfor improvements in accessible information and communication support.

The project is called Making health and socialcare information accessible.

3 NHS England Engagement Activity Report

A series of workshops werealso held, in partnership withnational charities, to seekviews from patient groups.

During the three month period, 1,147 completed surveys (questionnaires) were received, and over 150 people participated in face-to-face workshops.

NHS England would like tothank all of the individuals,groups and organisations thatsupported the engagement.

NHS England Engagement Activity Report

Thank you2

4NHS England Engagement Activity Report

We are really grateful tothose who supported people to complete the surveys.

Thanks are also due to allthose who promoted the online surveys or workshopson their websites, blogs or social media accounts.

And to those voluntary organisations and self-advocacy groups whosupported people to havetheir say as part of workshopsor meetings.


NHS England developed aplan to help people sharetheir views. These people included individuals andgroups who would be affected by the accessible information standard orwould have to put the standard in place.

Examples of people and organisations included:

• NHS organisations including clinical commissioning groups (CCGs) and foundation trusts;

• Adult social care bodies (local authorities);

Communications3


• Organisations providing NHS or adult social care services;

• Relevant royal collegessuch as the Royal College of Nursing (RCN);

• Voluntary and community sector organisations working with and / or led by people with disabilities which affect their communication and information needs;


• Professionals and individual service users who had previously expressed interest in this work;

• Local Healthwatch and other patient groups.

Information about the projectand details of ways to get involved were promotedthrough bulletins, newsletters,email, websites and social media.


Three surveys were developed to seek viewsfrom different groups:

• A survey aimed at patients, service users and carers;

• A survey aimed at healthand care professionals and organisations;

• A survey aimed at voluntary organisations, patient groups, local Healthwatch and communication professionals.

Summary of survey activity4


The three surveys werehosted online at:

All three surveys were available in Word documentformat to help people usingscreen readers and to allowprinting.

The patient, service user andcarer survey was also available from the website ineasy read format, as a BritishSign Language (BSL) videowith subtitles, and in audioformat.

Paper copies of the survey instandard print, large print,braille, and easy read werealso available on request.

www.engage.england.nhs.uk


If anyone had difficulty inreading or responding to thesurvey they could respond bymail, telephone or attend aworkshop.

675 surveys were receivedfrom patients, carers andservice users.

Most people did not get thesupport they needed to communicate when usingNHS or social care services,but some did.

Key findings from patient,carer and service user surveys


Most people did not receiveinformation in a format theycan use when using NHS orsocial care services, but somedid.

Most people missed out onsome important informationabout their care, but somedid not.

People felt that if health andsocial care organisations always gave them information they could understand and communication support thenthey would have:

• More independence, and control over theirlives;


• More privacy and a rightto confidentiality;

• They would be more confident and less stressed or anxious;

• And there would be improvements in patient safety, choice and access.

Most people wanted to beasked face-to-face aboutwhat support they needed tocommunicate.


Other ways are email, letter,text, online form, telephone,easy read, BSL and socialmedia.

A total of 299 completed surveys were received fromNHS and social care professionals.

Most organisations reportedthat they routinely record information, but some didnot.

Key findings from health and care professionals and

organisations survey


Most organisations reportedthat they record informationin an electronic system, butsome use paper records,care plans, or health passports.

Most people are asked abouttheir needs as part of the initial assessment, but someare not.

Sometimes carer needs areasked but not all the time,and this is usually recorded inthe patient record. Sometimes the carer has theirown record.

Most organisations would provide different formatswithin the organisation, butsome would go to suppliers toprovide this.


Some organisations had difficulty in recording or responding to support needs.

If people needed a differentformat or communicationsupport they would have towait longer. Sometimes hours,sometimes days.


A total of 173 completed surveys were received.

Poor communication, use ofdifficult words (jargon andacronyms) made it difficult toprovide different formats ofinformation.

People said that there is alack of BSL interpreters, or theinterpreters are unqualifiedand not very good.

Key findings from support andsupplier organisation survey


Some staff are inconsiderate,rude or impatient. It is suggested to provide deafawareness and customerservice training to staff.

Some organisations do nothave procedures, plans,money, or equipment to provide alternative formats.

SignHealth, RNIB, Action onHearing Loss, CHANGE,Sense, Wandsworth CouncilAdult Social Services and Bradford Talking Mediahosted workshops as well assome other groups.

Summary ofworkshops 5


Over 150 people had theirsay across the country.

People usually did not get thecommunication support theyneeded, and lots of peoplegot letters that they cannotread.

Organisations should offermore ways for people to contact them, like telephone,text and email.

Details of needs should berecorded and shared withother services providing careand people shouldn’t haveto explain it over and over.


Services should provide correspondence and information in a range of accessible formats, like easyread, large print, email,braille, audio and BSL video.

People with sensory lossand/or a learning disabilitycan access services independently and participate in decisions abouttheir health and care with theright information and toolsavailable.

People who need a differentformat had long delays getting information. Theycould wait up to 14 days if an interpreter was needed foran appointment.

Some interpreters were notsuitably qualified,


People were not able to request a male or female interpreter.

And interpreters are not always available out of hours.

People were not informedwhen an interpreter wasbooked.

Some people felt theyneeded to fight to get a suitable format of information.


Waiting areas can be veryfrustrating places.

Many people struggled with‘scrolling screen’ or other visual alerts or displays, andwith touch-screen ‘check in’systems, because they wereunable to see or read them.

Many participants also struggled with verbal or audible alerts because theywere unable to hear themand / or unsure where to goor what action to take basedon the alert.

Some participants hadwaited for several hours in awaiting area unaware thattheir turn had been andgone, and / or waiting for aninterpreter to arrive.


Some people shared positiveexperiences of simple stepstaken by staff to overcomedifficulties.

For example guiding the person to a seat outside therelevant consultation or treatment room or coming to‘collect’ them when it wastheir turn.

Positive experiences werealso shared of staff who hadreally helped people by taking the time to ensure thatthey had understood information.

Participants who used hearing aids expressed frustration that many healthand social care premises didnot have induction loops.


And of those that did, theyoften did not work or staffwere unaware of how to usethem.

People suggested that staffcan make a significant impact to people’s experience by:

• Allowing time for the patient to ask questions.

• Writing information down.

• Guiding them to a seat in the appropriate waiting area.


• And allowing longer appointment times.

People suggested that moreinformation should be available in a range of accessible formats online.

This included informationabout common conditions,symptoms, services, healthylifestyle advice, and complaints procedures.


Some voluntary sector organisations and individualsprovided feedback on theengagement process.

Some people felt that the BSLvideo was not acceptablefor deaf people with a learning disability.

Some people felt that thewritten survey was too complicated and difficult.

Feedback received onthe engagement process6


Some people felt that theeasy read survey was toolong, and had too many options.

We listened to this feedbackand will do better next time.

We will use the informationprovided in surveys and workshops to write the accessible information standard and inform how organisations will put this in topractice.

Impact of engagement 7


We will not be including astandard question to find outabout people’s needs in thestandard.

We will tell organisations tothink about how information is shared between care providers.

We will tell organisations torecord information in a consistent way.

We will tell organisations touse appropriately trained interpreters.


We will be asking organisations to allow moretime for appointments.

Copies of this report areavailable in, British Sign Language (BSL) video (with subtitles), and audio formatsfrom the NHS Englandwebsite:

The report can also beposted out as a hard copy, inlarge print, easy read, on CD,on DVD or in braille on request.

Contacts and alternative formats8

www.england.nhs.uk/accessibleinfo


If you wish to request a copyof the report, or if you have aquery or concern about itscontents, please email:

Alternatively, you can telephone us on:

[email protected]

0113 8251324

Sarah Marsay, Public VoiceTeam (Accessible Information), NHS England,7E56, Quarry House, QuarryHill, Leeds, LS2 7UE

or write to:

NHS England Engagement Activity Report

November 2013 - February 2014

Making health and social care information accessible

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