Need it to Read it Campaign:

Your NHS information - your format – when you need it

Need it Toolkit

March 2016

Introduction

This toolkit is for you if you’re blind or partially sighted and cannot read NHS information given to you in standard print format.

Your right to accessible information

By 31 July 2016 your right to accessible NHS information is strengthened by a new NHS standard. The standard is mandatory which means all NHS providers are required to meet the communication needs of their patients and service users, including providing information in accessible formats. It applies to healthcare providers from GPs and dentists to hospitals and pharmacists.

People who cannot read standard print have been used to the problems that inaccessible NHS information causes,from missing appointments to arriving unprepared for a medical procedure. Being unaware of your diagnosis and the decisions that a specialist makes about your treatment, and not knowing what is written on the dispensing label on your medication box, are also common problems caused by information being unavailable in accessible formats.

It has always been up to peopleto find ways round the lack of NHS accessible information, from asking other people to help, to scanning and magnifying unreadable bits of paper, to challenging providers under the Equality Act 2010. None of this is easy especially when you’re unwell.

This new NHS accessible information standard should bring about a dramatic change by putting the onus on NHS providers to ask the patient what they need and provide it as part of their routine service.

Within this toolkit, there are five practical steps to help you use the new NHS standard to get what you need, along with ways to help others get what they need too.

What NHS providers need to do and when

  • By 1 April 2016,NHS providers must identify and record how their patientsneed to be communicated with. Whether they are visiting the service for the first time, or a regular user.
  • By 31 July 2016, these records must be in place, and patients should receive information in a format they can read.

Act now

Step 1 - take action to notify

From April 2016, NHS providers including GP services are required to capture and record their patients’ accessible format needs on their patient record systems. However, NHS providers aren’t implementing the standard in the same way or at the same time.It’s also important to know that they aren’t setting up systems that automatically identify patient communication needs.It is up to patients to say what they individually require.

Take action: From 1 April, notify your GP Practice Manager of your required accessible format. You can do this in writing - by letter or, if available, by email.

We’ve created two ways to help you create and send a written notification letter to your GP Practice Manager:

Option 1 – Download a copy of the DIY GP notification template to make your own letter at

Option 2 - phone RNIB’s Helpline on 0303 123 9999 for more information and to receive a hardcopy of the GP notification template.

To find the contact details for your GP Practice, please visit or call 0300 311 22 33.

Step 2 – did you get a successful reply from your GP?

A successful response is when your GP confirms that your needs have been recorded and flagged on the patient record system, and your needs will be met by the July 31 deadline.

However if you don’t get a response, or if they say they cannot meet your needs by the July 31 deadline for any reason, then treat this as an unsuccessful response.

Take action: Test whether your notification was successful or not by asking yourself these three questions:

  1. Did you get a timely response from your GP?
  1. Did your GP reply to you in the accessible format you requested?
  1. Did your GP confirm they will meet your request by the July 31 deadline?

Step 3 – share successful and unsuccessful responses with RNIB Campaigns

The new NHS standard requires GP services to be able to capture, record, share on referral, and act on your accessible communication needs by 31 July 2016. Did your GP respond successfully?

Take action: Let RNIB Campaigns know if your GP responded successfully or if they didn’t. Allow three weeks for your GP to respond.

Call us on 020 7391 2123 or email

If your GP did not reply successfully, we’ll provide you with advice and information to help you follow up your request.

Step 4 – help others notify

Many blind and partially sighted people will not know about the Need it to Read it Campaign, or may feel they personally don’t want to notify their GP. As most people have coped for so many years without accessible NHS information, it may not seem that important to start getting it now.

Take action: Help other blind and partially sighted NHS users to notify their GP by spreading the word and giving them a bit of practical support.

Here are some examples:

  • Promote the Need it to Read it campaign and toolkit with other people with sight loss through an upcoming meeting of your local society or local campaign group
  • Share information about the campaign on social media using our hashtag #NeedItToReadIt
  • If someone asks you for help, give them a hand to explain why notifying is so important and give them RNIB’s Helpline number if they aren’t able to get online

Step 5 – engage patient groups and Healthwatch to promote and monitor the new standard.

Local patient participation groups (PPGs) and Healthwatch exist to listen and act on people’s views and experiences of health and social care. Getting them to promote and monitor the successful implementation of the new NHS standard amongst local healthcare providers will help to ensure local GPs, dentists, pharmacists and hospitals put the standard into practice.

Take action: Contact your PPG and /or local Healthwatch to ask them what they are doing to promote and monitor the standard.

To get in touch with your PPG please contact your GP surgery.

To get your local Healthwatch contact details please visit or call our campaigns hotline on 020 7391 2123 and we’ll do our best to help.

An NHS accessible information briefing to support your engagement with PPGs and Healthwatch can be downloaded at:

To obtain this briefing in hardcopy format or for any further advice on what to say when speaking to your local Healthwatch or Patient Participation Group, please get in touch with us on 020 7391 2123 or at and we’ll be happy to help.

More information

For any other enquiries about this campaign or the new NHS accessible information standard please contact:

Email:

Telephone: 020 7391 2123.

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rnib.org.uk