Inclusion For All
Inclusion For All Action Hub
If we get this right, we can help to save lives.
This is a citywide initiative led by Healthwatch Leeds putting inclusion and accessibility into all areas of health and care. Not a talking-shop but one based on collective action and adhering to the legal requirements of the Accessible Information Standard (AIS).
A summary of what people in Leeds have told us over the last two years, mainly about their experiences when visiting GPs and hospitals and in relation to the Accessible Information Standard.
These are our recommendations based on people’s suggestions.
Making your communication with your service users accessible and inclusive.
Making your Communication with your service users accessible and inclusive
This guide is intended to help health and care professionals to make their communication with service users more accessible and inclusive. By ‘communication’ we mean things like letters, emails, text messages, websites, leaflets and videos.
It outlines the accessibility issues that people with sensory impairment and/or disabilities are facing and ways/tips to tackle those. Please keep checking back to this document. This document will be updated regularly as and when we receive resources to add to it. Please check the date on the cover to check you have the most up to date version.
Click on the images on the right to read the guides
The economic benefit of Accessible Information
Spotlight on the Accessible Information Standard
In September 2022, we interviewed three individuals with communication needs about their experiences of accessing health and care services.
Karl has a visual impairment, Jason is deaf and Shaun has learning disabilities and find that their impairments cause a barrier when accessing health and care services. By law, health and care organisations should provide information in a way that they understand and is accessible to their communication needs.
This video highlights a need for health and care services to act now on the information that we know so that people like Karl, Jason and Shaun can be communicated to in a way that they understand.
Karl, a blind person's experience
In 2018, Karl told is that he often received letters for his health appointments which he couldn't read. Tatum went back to him to find out whether things have changed.
Karl's experience highlights more need to be done in health services to meet the communication needs of blind people. He said "We have been asked for feedback and we repeatedly have said it's a matter of acting on information we already know. Services simply need to follow the Accessible Information Standards, the rules that are already laid down and follow them consistently."
You can watch the video of Karl below.
Jason, a deaf person's experience
We first met with Jason in 2014 at an event we ran for deaf people. At the event, he fed back that a two-way appointment texting system would help to resolve the communication barrier for so many deaf people. When we spoke to him again recently, Jason was frustrated that many deaf people, including himself, had been asked time and time again what would improve their experience since then, but nothing has ever changed. He said what deaf people needed were regular updates on progress made to improve their experience.
You can watch the video of Jason below.
Shaun, a person's experience with learning disabilities
People with learning disabilities often face significant challenges when it comes to accessing health and care services.
In the video below, Shaun has shared his own experience to illustrate what works well when working with patients with learning disabilities.
He has highlighted the importance of working with individuals to understand their specific needs and preferences, rather than assuming what they may need.
You can watch the video of Shaun below.
Supporting GP practices to be more accessible
In 2023 we created a video which can be played on the monitors within GP practices. The video highlights the patient's right to ask for appropriate communication support for health and care appointments and examples of support they can request.
You can watch and download the video by clicking on the button below. Alternatively, you can watch via YouTube by clicking on the video to the right.
Supporting all health and care providers to be more accessible
Following the initial GP video in early 2023, we created another video which can be used by all health and care providers. The video highlights the patient's right to ask for appropriate communication support for health and care appointments and examples of support they can request.
You can watch and download the video by clicking on the button below. Alternatively, you can watch via YouTube by clicking on the video to the right.
A person who's first language in not English's experience of accessing health and care services
This is an insightful video featuring Mr Lam, a Chinese gentleman who shares his experiences with health and council services as a non-native English speaker.
Mr Lam's story highlights the language barriers faced by individuals with English as a second language. In addition, it provides some practical suggestions for health and care services to enhance accessibility for people with language needs.
Click on the video to watch.
One year on, let's take a look at what has changed since launching the action hub
Since the hub launched in November 2019, it has united services and individuals in the shared goal to make sure everyone’s communication needs in Leeds are met and the Accessible Information Standard is followed.
Click on the image on the right to download the word document that shows the achievements that have happened in the first year of Inclusion For All!
Read or listen to the meetings here
Below is a list of the meetings that have taken place click on each to read the minutes from that meeting. You can also click on the audio file to listen to the meeting instead
Inclusion for all update March 2023
Read the update click here
Listen to the update click here
Inclusion for all meeting April 2022
Read the minutes click here
Listen to the minutes click here
Rapid review of BSL presentation click here
National review of Accessible Information Standard presentation click here
Inclusion for all meeting February 2022
Read the minutes click here
Listen to the minutes click here
Inclusion for all meeting September 2021
Read the minutes click here
Listen to the minutes click here
Inclusion for all meeting May 2021
Read the minutes click here
Listen to the minutes click here
Inclusion for all meeting March 2021
Read the minutes click here
Listen to the minutes click here
Inclusion for all meeting January 2021
Read the minutes click here
Listen to the minutes click here
Inclusion for all meeting November 2020
Read the minutes click here
Listen to the minutes click here
Inclusion for all meeting September 2020
Read the minutes click here
Listen to the minutes click here
Inclusion for all meeting July 2020
Read the minutes click here
Listen to the minutes click here
Inclusion for all meeting May 2020
Read the minutes click here
Listen to the minutes click here
Inclusion for all meeting March 2020
Read the minutes, click here
Listen to the minutes, click here
Inclusion for all meeting January 2020
Read the minutes, click here
Listen to the minutes, click here
Inclusion for all meeting November 2019
Read the minutes, click here
Listen to the minutes, click here
A Day in the Life
A photo and story collection from people with a disability. This is a Healthwatch Leeds and Leeds Museums and Galleries collaborative project to mark the 2020 International Day of Disabled People in Leeds.
We have featured five stories from people with disabilities and carers about their experiences during Coronavirus pandemic in this collection.
We hope by illustrating these stories will help to raise awareness of the challenges people with disabilities are facing. We want to highlight the importance of taking into account their needs when introducing new rules or changing the ways of delivering services during the pandemic.
Click on the document on the right to download the word document with the stories
#LeedsForAll
What people are telling us about their experiences
Leeds Teaching Hospital Trust patients’ experience team shared some great work that they have been working on to address the issues raised by the deaf people at the Inclusion for all meeting in May.
- Silent animation for deaf/Hard of hearing people based on feedback from deaf individuals. Sensory awareness magnets are mentioned in the video – these are used on wards to identify communication needs.
- LTHT’s ward iPads all now have Otter audio transcription app.
- Video calling app also now available, can be accessed by BSL interpreters.
- Befriending scheme set up with Leeds Society for Deaf and Blind People for deaf people in hospital.
- Text phone system under development for Patients Advice and Liaison Service.
- Developments underway to enable deaf patients to access TVs.
- Hospital communications book under development to help deaf people to communicate while face masks still mandatory (will include pain scale, basic needs, etc.)
- Video interpreting still available on wards for foreign languages and BSL (had 25 units pre-lockdown, now increased to 50).
- Face masks issue – looking into options for transparent masks to facilitate lip-reading
Deaf The Child & Adolescent Mental Health Services (CAMHS) service
In 2009, Deaf CAMHS was established as a Highly Specialised National Service.
It was reviewed in 2010 and as a consequence some key changes were made. Families told them they valued the presence of Deaf staff, they reconfigured the staffing establishment so that deaf staff had greater opportunities within the service and opportunities for career progression. They also acknowledged the value of BSL/English interpreters, so they made a decision to employ interpreters rather than follow the model of most other deaf services, which is to employ interpreters on a freelance basis.
Deaf CAMHS has aspired to be a service, not just for deaf people but designed and delivered with, by and for deaf people. Click on the image on the right to watch the video.
Covid-19 A psychological survival guide for working from home in the midst of the Covid-19 crisis.
They have also translated into BSL (with subtitles) their service leaflets, welcome pack and forms into BSL – they put a QR Code and YouTube link to the video on the paperwork.
You can watch the video by clicking on the image on the right.
Consent and Privacy notice – BSL
In addition to this, as and when they find out new and relevant information they will share it across the Northern Arm teams and the National Service mailing lists e.g. https://www.bslhealthaccess.co.uk (a new service providing access for deaf people via remote interpreters, funded by Sign Health, in response to the Covid-19 and the impact on access to health services across the UK).
They have a service twitter account and share information with others through this. The communications team has had BSL translations of information and uploaded it to the trusts YouTube account and made it available to the deaf community e.g. COVID-19:
They work with the Child Orientated Mental Health Intervention Centre (www.comic.org.uk), a research team that is part of LYPFT and based at York University, under Professor Barry Wright. They have worked on significant projects that impact upon the deaf community e.g. the translation of the SDQ, the adaptation and validation of diagnostic instruments for Autism in Deaf children, A systematic review of early interventions for parents of deaf babies and language brokering (of hearing children for their deaf parent/s in health settings and its impact upon their mental health).
Experience of Service Questionnaire's (ESQs) are sent to all families at discharge. There are 3 versions: child, parent/carer and referrer. These are available in written English and are also translated into BSL (on SurveyMonkey), written English and other languages as required. An example of this can be found here:
The feedback from the ESQ is collected by admin and is taken to the service Clinical Governance meeting for review.
Their service Welcome Pack (which is given to all families when they enter the service) includes compliments and complaints form for parents/carers, this is in written English and translated into BSL (a QR code on the paper provides the link to this).
The Northern Arm also has an annual CPD day; this has included training from deaf people and from parents of deaf children e.g. Paddy Ladd (deaf) provided a day’s training on ‘deafhood’, an ex-service user presented about their experience as a deaf trans and Khalid Ashraf presented about Deaf Muslims (www.muslimdeaf.org) and a parent gave a presentation about Deaf Blind.
As a service they were involved in the consultation about the accessible information standards with NHS England and shared our work with them (giving them examples of our translated leaflets with QR Codes that were seen as gold standard).
As a result they positively influenced changes to the standard e.g. to include access for deaf patients, deaf parents of hearing children and deaf next of kin (which had not been included).
As mentioned above the Deaf Service Advisor and Lead Interpreter have specific responsibility for access to the service – they have knowledge of the AIS and remind staff about access, as and when required.
What difference has the hub made?
Here are a few examples of how the hub has helped people in the first year.
We have begun to see the impact of this work. For example, recently a blind person told us that he had finally received a phone call from St James Hospital with details of his future medical appointment. He shared his concern with us when we carried out our engagement work with the visual impaired community in 2019. The issue was about blind people such as himself kept on receiving letters of medical appointment despite repeated requests for the information to be communicated to them in different formats.
“I was extremely pleased to receive a phone call recently from St James Hospital with details of my future medical appointment. This was a welcome change from the usual letters which I cannot read, and which have, in the past led me to miss appointments.
On the phone it was noted by the person that she had access to the information that I could not access printed material which gives me hope for the future that this could be repeated.”
Karl Proud
“We are doing lots on raising awareness about issues for deaf people, particularly at this time, following you sharing Jason’s story. The patient’s experience team is working on a video to communicate difficulties being faced and are also running a short virtual workshop later this month with Senior nursing staff. We will additionally have a piece going out in the Trust bulletin which reaches all staff.”
Krystina Kozlowska - Head of Patient Experience -
We have also heard from the Chief Executive officer of Leeds Society for Deaf and Blind “We deliver the BSL contract for the hospitals, and on the back of you sharing this feedback, we have begun delivering a mentoring service for the hospitals on a trial basis, this is to support deaf people facing isolation. It is fantastic that this feedback has led to lots of positive activity.
"I spoke with Jason about this and he is really pleased with the feedback. He is also really pleased that by sharing his experience it is making a positive difference, I know that the hospital is also keen to keep him involved too. This is brilliant news and it really shows the commitment to making positive changes.”
Charis Green -
Who is involved
This is a multi organisation action hub
Representatives from commissioners and providers who have attended the meeting so far:
- Leeds City Council,
- Leeds CCG
- Leeds Teaching Hospital Trust,
- Leeds Community Trust
- Leeds York Partnership Trust,
Third sector organisations:
- Deafblind UK
- Guide dogs
- Forum Central
- Bid-Leeds hearing and sight loss services
- National Federation of the Blind
- Leeds Society for Deaf and Blind People
- Leeds Care record
- People with living experience have attended the meeting
- Advonet
The hub meets bimonthly.
Each meeting will focus on the issues facing one community of interest. People with living experience will be invited to the meeting to share their views and find solutions together with decision makers.
