Q Exchange
Improving Outcomes, Access & Waits for Deaf British Sign Language Users
- Winning idea
- 2023
Meet the team
Also:
- Claire Hoggeth, Advice & Support Manager Deaflink
- Fardeen Choudhury, EDI lead Newcastle Hospitals NHS FT
- Gemma Norman Patient Experience Newcastle Hospitals NHS FT
- Chris Rowlands EDI lead CNTW NHS FT
- Faye Gates Patient Experience NHCT NHSFT
- Patrick Price EDI lead NHCT
- Lucy Thomson Community Engagement Officer NHCT
What is the challenge your project is going to address and how does it connect to the theme of 'How can improvement be used to reduce delays accessing health and care services'?
9 million people in the UK are Deaf or hard of hearing. BSL is the preferred language of over 87,000 Deaf people, for whom English may be a 2nd or 3rd language.
- 7% of Deaf people reported no accessible method of contacting their GP
- 81% of patients reported appointments where their communication needs were unmet
Studies show the Deaf community has a higher-than-average prevalence of health conditions which do not derive from deafness, most of which are preventable, leading to health inequalities and increased mortality (Abrahams, 2017).
Despite existing policies, legislation and systems, health services consistently ‘fail’ the Deaf Community. Miscommunication, inaccessible information and lack of understanding lead to delays in healthcare appointments and treatment leading to inequity.
Deaflink is working with 3 Trusts from the NENC ICB system to test the use of a highly innovative ‘heath navigator’ role to reduce the delays BSL users experience in accessing healthcare and improve their experience.
What does your project aim to achieve?
Our project aims to improve outcomes, access and waits for BSL Users, reducing inequitable access.
We will do this through a new ‘health navigator’ role to improve access for BSL users. Health navigators are Deaf people who are native BSL users/qualified. They ensure that the patient is fully informed and empowered at all stages of the patient pathway, from access to discharge. They improve access and reduce waiting times by helping to:
- Support the flow of communication and information between health teams and the patient to ensure there are no delays or unwarranted waits for treatment
- Prepare patients for healthcare appointments, ensuring they get the most out of their appointment and supporting staff to offer an equitable service
- Support discharge and improve flow, releasing resources for other waiting patients
- Engage with the Deaf community to better understand barriers to access and innovate ideas which reduce health inequalities.
How will the project be delivered?
The project will be managed by Deaflink and overseen by a multi-agency steering group made up of people with lived experience of Deafness and links with the Deaf community, community providers and three NHS Trusts from NENC system (Newcastle Hospital, Northumbria and Cumbria, Northumberland, Tyne and Wear) providing acute, community and mental health services.
Each NHS partner has a dedicated lead and will provide match-funded time to support the project, ensuring the funding from QExchange goes to deliver and evaluate the health navigator service. The programme will report into each provider’s Equality and Diversity Workstreams and is supported at system level by the ICB. Risks and issues will be reported to the steering group and managed by the appropriate provider lead.
A Health Navigator will be employed by Deaflink to offer services that increase access.
We have budgeted for an evaluation of the service, as this is critical for sustainability.
How is your project going to share learning?
This project will generate huge learning on how to improve equitable access to healthcare and reduce waits for Deaf people and other people with communication needs. Our second learning opportunity is to demonstrate how we can work together to deliver improvement across a system, not just in a single Trust.
We will:
- form a Q SIG and invite other Q members to join us and collaborate
- write a case study to share with the Q community and our ICB, so our approach can be used to support other learning in this field.
- make our outputs practical, sharing how we did this and what we discovered.
- hold a virtual ‘lunch & learn’ session for the QCommunity to open up a dialogue about this work.
We will reach out to other Q SIGS and use Twitter to connect outside of the formal planned activities.
We also aim to publish our work in BMJQuality.
How you can contribute
- Idea generation: help us build this idea an make it even better
- Share: any resources or learning you have
- Join: our Special Interest Group and collaborate with us, bringing your expertise and passion
- Come to: our ‘lunch & learn’ session to find out what we have done and what could potentially scale up in your local area
- Join: our steering group
- Support: us by offering some evaluation expertise or time. We recognise that measuring some of the outcomes is complex so we would welcome expertise on how to calculate a return on investment and how best to design evaluation questions in BSL for equipoise.
- Be our critical friends: help us to be better by offering challenge and critique
Plan timeline
| 5 Jun 2023 | Match funded dedicated time from NHS organisations commences |
|---|---|
| 5 Jun 2023 | Project start up & agree hours of Health Navigator time |
| 5 Jun 2023 | Steering group starts to meet monthly and report into organisations |
| 26 Jun 2023 | Evaluation process agreed with theory of change: linking with universities |
| 17 Jul 2023 | Delivery: Health Navigators start to offer service to BSL users |
| 4 Dec 2023 | 6 month programme review and capture of learning: focus on sustainability |
| 4 Mar 2024 | 9 month programme review and capture of learning: focus on sustainability |
| 25 Mar 2024 | Programme delivery ends |
| 6 May 2024 | Dissemination of final outputs begins (Q community, ICB, publication) |
| 6 May 2024 | Programme learning and evaluation analysis is completed |
Project updates
16 Jan 2024
Reflecting on our progress to date we have a lot to celebrate and share with the Q community.
The first phase of our QExchange plan was to build on the strong collaboration we had formed between Deaflink, Newcastle Hospital NHS FT, Northumbria Healthcare NHS FT and Cumbria, Northumberland, Tyne, and Wear NHS FT with from our local NECB ICB.
We meet every month as a steering group. We have found that this forum allows us to identify barriers that prevent access to services and work more effectively together as a system to raise awareness and generate solutions to complex issues such as access to reliable BSL interpretation services. Working in this way has helped us integrate our organisational approaches, share key information and resources and to create a range of Deaf awareness training materials for staff. We hope this organisational co-ordination means that there is greater consistency of approach across our geographical footprint which will improve patient experience and outcomes.
The steering group met in the summer to draw up a theory of change and agreeing key goals and deliverables for the QExchange programme and beyond. We agreed a key strategic goal is to try and measure the impact of this work and to demonstrate its value.
Highlights of the programme deliverables so far include the delivery of Health Navigator services to BSL users across our geographical footprint. We have two amazing Health Navigators in post, who are based in Deaflink and work to improve access to healthcare for Deaf people across all the partner organisations and other healthcare services such as primary care, social care, dentistry, pharmacy, counselling, patient transport, care homes etc. The Health Navigators are Deaf people who deeply understand the most effective utilisation of BSL interpreters in health care settings and who are experienced in helping improve access to health care through their knowledge of healthcare systems and processes.
Since we were granted the QExchange award over 40 BSL users have accessed the service of the Health Navigators in 2023, often using the service multiple times after they have discovered how useful it is. The healthcare navigators have offered 2141 healthcare related contacts, often needing to provide help at multiple points to ensure the success of a single healthcare appointment. For instance, the health navigator may communicate with the client; their GP; a hospital consultant and hospital administration for a single appointment, plus help with any follow up actions. They have helped to highlight just how complex it is for BSL users to access healthcare and how many barriers there are to overcome.
We have helped Deaf people to have better access to a wide range of acute emergency and ambulatory care, outpatient appointments, mental health treatments, social work, dental care, pharmacy, and primary care. The most frequent type of support that is asked of the Health Navigators is to help BSL users:
· feel better informed about their healthcare appointment and the processes that surround it.
· to contact healthcare providers on their behalf.
· to ensure interpreters are in place.
· access appropriate healthcare advice.
· by offering emotional support and empathy.
· supporting the education and awareness of health professionals about BSL user’s needs and rights.
We can already evidence that the health navigators have improved crucial elements of people’s patient journeys through:
· improvements to their healthcare pathway and health outcomes.
· supporting informed consent.
· increased staff understanding of Deaf patients.
· improving access and reliability of interpretation services.
We have collated detailed data from each contact a Health Navigator makes, to better understand the ways in which our underpinning systems need improvement. We can already see strong improvement themes emerging, such as the need for staff to have greater Deaf awareness training and we are hopeful that by the end of the programme we will have captured detailed system level feedback from a Deaf BSL perspective in a way that has never been seen before. Alongside this we are collating case studies to show how the health navigator service works and the benefits it brings.
Another key deliverable has been to develop an evaluation plan. Originally, we had planned to make links with a local university however, as these links weren’t already in place and as time was pressing, the steering group decided to invite an independent evaluator to submit a proposal to us. Together we have agreed an approach to evaluation that we hope will help us demonstrate the economic and social value of the Health Navigator service.
Our learning to date includes:
· Trying to improve healthcare access for BSL users is hugely complex and is exactly the type of improvement that lends itself to system level improvement efforts. We are achieving more by taking a partnership approach than we would have done by trying to address this issue as separate organisations. Collaborating across boundaries has allowed us to share resources and has strengthened our voice for change.
· We have been very lucky to have the support of Deaflink. Without the charity’s ability to host, supervise and organise the Health Navigator service we would have been much less effective. Deaflink has many years of experience of building trust and relationships with the local Deaf community and so was able to promote the service and help signpost it to BSL users that were facing challenges in accessing healthcare. Having Health Navigators that have lived experience of Deafness, but who are also expert in health system navigation and the use of BSL interpreters has been crucial to our success to date and we are very grateful to the Deaflink team for their passion, dedication, and expertise.
· Collecting data together is helping us build up a clear picture of the system level challenges there are and is giving us thematic analysis of where service improvements are needed. Collating case studies is a very powerful way to explain to people why issues such as access to interpreters, informed consent and better healthcare information are essential for better healthcare outcomes.
The next steps for our project over the coming months include continuing to deliver Healthcare Navigator services and analyse the data they collect. The evaluation team will conclude their desk top research, start to analyse key metrics and undertake some focus group work to collect a range of qualitative and quantitative measures. We have been invited to present our work at the ICB and will continue to feedback progress on the programme through each NHS Trust’s Equality and Diversity Boards.
If you are interested in what we are doing and would like to get involved then we are actively looking for help with:
· The sharing of any Deaf awareness materials or training that you have
· The sharing of any expertise or insights you have from your local area
Comments
Heidi Jobling 24 Mar 2023
Hi Helen, thank you very much for your comment and insight. I think that there are a number of issues affecting access to healthcare for people who use BSL and as you stated and involving people from the Deaf community to provide support is important. An understanding and lived experience of Deaf culture can build trust. To be able to communicate directly with the patient is invaluable.
You make a useful suggestion of engaging with students who are learning sign language and this would be interesting to explore further. This project is about working in partnership and this will be encouraging more health staff to have a greater awareness of the information and communication needs of BSL users. Hopefully we will gather information about the stigma and exclusion that many BSL users face and our shared learning will identify a number of ways that we can try and remove/reduce some of the barriers.
Helen Crimlisk 23 Mar 2023
Great project. I like the focus on care navigation and also employing someone from the deaf community to support.
Have you thought about involving others who are learning sign language in the project. The medical school where I work (Sheffield) has a cohort of students learning sign language as part of their course. if you could find similar groups locally you could impact more on stigma and exclusion?
Heidi Jobling 24 Mar 2023
Hi Helen - I forgot to click reply and posted a separate comment! see reply above. Thanks
Anna Burhouse 17 Mar 2023
We have just added in some fresh resources to help explain the issues and to better describe what we are hoping to do together at system level. Please see the PowerPoint slides we have created that explain the background to this work and what we have found out in our 'year of discovery' together as a partnership. We have also included a film that we have consent to share, which helps to demonstrate how access to qualified BSL interpreters is a key access and quality issue. We have also been inspired by the work on frailty in Sweden to create a persona, whom we have called 'Glenda' to help highlight how poor access, long waits and poor patient experience are impacting on people's lives.
Please let us know what you think of the Health Navigator idea and if anyone has any experience in this area or contacts we would be very grateful to know.
Thanks so much
Anna
Margaret Scott 14 Mar 2023
Unfortunately, the majority of health professionals do not have the
necessary communication skills or knowledge of deaf awareness
to meet the needs of deaf patients. This often results in deaf
patients feeling excluded from decisions about their medical care.
This needs to change. I would like to see the
communication needs of deaf people being acknowledged and
addressed by those responsible for providing services. This project has the potential to change the healthcare landscape for deaf service users/patients.
Anna Burhouse 15 Mar 2023
Thanks so much Margaret for sharing your thoughts and expertise. We have been working together as three NHS Trusts and have been discovering that exactly as you say the level of Dear awareness in staff definitely needs improvement. We hope the health navigator role will make outcomes and experience better for patients and staff. Staff need to feel confident in how to book an interpreter, use video interpretation services and to understand the drawbacks of this. One of the most common misassumptions we are finding is that staff do not understand that BSL is a separate and unique language and that for many BSL users English is often a second/third or unknown language, so asking someone to communicate through written English is not appropriate. We are also finding that consent is being sought inappropriately via use of friends or family. There is so much improvement we could do, which is why we are so keen to do this work.
Thanks again for your helpful thoughts and support.
best wishes
Anna
Kristin Moat 13 Mar 2023
This is a great initiative as from a rehab viewpoint, we really struggle to offer patients with hearing impairments effective rehab in our physiotherapy services. Often, patients choose to opt out, mainly as they find it extremely frustrating not being able to effectively engage in meaningful rehab which often is the most optimal management option for their musculoskeletal problem. Would be great to see if we can integrate more of the deaf community into our rehab groups as this can have a positive impact on the patient, the other participants and particularly the staff who will learn to enrich their delivery to maximise effectiveness with all patients.
Anna Burhouse 13 Mar 2023
Thank you very much Kristin for this information and for your reflections on the issues which you face in delivering your services to Deaf patients. This is a really good example, where you have clearly identified the practical difficulties of providing effective communication and the detrimental impact which this has on rehabilitation . Our project could make a real difference to engagement rates and to the musculoskeletal health of Deaf patients, reducing the possibility of future deterioration and potential referral back to services.
Peter Derrington 9 Mar 2023
A fantastic idea which could bring a much needed significant improvement for a very vulnerable section of our population. Any work that can help reduce the inequity of access (and outcomes) for these individuals should very definitely be applauded and I await with interest to see the impact this project has for the community.
Heidi Jobling 10 Mar 2023
Thanks for your comment Peter. The inequity in access to health provision for BSL users is stark once you look. This project would really help to better understand the impact of the delays in treatment and issues affecting BSL users access to healthcare. This funding offers a great opportunity to work collaboratively to share understanding and identify barriers.
Annie Laverty 2 Mar 2023
I'm keen to support this idea because we know that under-diagnosis and under-treatment of potentially serious conditions is more common in people who are deaf. Deaf people are twice as likely as hearing people to have high blood pressure which has not been diagnosed. They may also be more likely to have undiagnosed diabetes, high cholesterol and cardiovascular disease. Even when Deaf people have been diagnosed, they are less likely than hearing people to be
adequately treated for these conditions (high blood pressure, high cholesterol, diabetes and cardiovascular disease). Together these may put deaf people at risk of preventable heart attacks and strokes, and diabetic complications such as kidney failure and blindness. As these conditions cause long-term ill-health, disability, and death, urgent measures are needed to address this marked health inequality. Well done to the team for putting together a great idea to tackle this.
Anna Burhouse 6 Mar 2023
Thank you very much Annie for your thoughts and insight into the additional complexities and barriers which Deaf people face in relation to healthcare. We anticipate that by taking a multi-agency approach, we will help to address these barriers holistically. Our discussions in laying the foundations for this work have highlighted a huge mistrust of the healthcare system and of professionals by the Deaf Community, and we believe that by working with the BSL health navigators, we can begin to build much greater trust and engagement.
Eliot Sykes 2 Mar 2023
This is a much needed initiative and of additional benefit because it is being tackled at scale across the wider health and care system. As clinical lead for outpatients I am well aware of the inconsistent and sometimes inadequate offer for deaf and hard of hearing patients. The risk is this fuels potential inequalities and I believe this proposed approach would start to resolve this issue in a patient centred and tailored manner.
Anna Burhouse 2 Mar 2023
Thanks for your insights as a clinician Eliot. We certainly believe we can make a difference through the use of a health navigator as they can provide support BSL users all the way through the healthcare journey from receiving and understanding a letter, helping to ensure a BSL interpreter is available, preparing for hospital or GP appointments, supporting staff to deliver more equitable care and then ensuring discharge processes go smoothly. They can also help with Patient Initiated Follow Up, helping us to innovate and improve access & flow in outpatients.
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