Reflections on engaging with non English speaking patients:

Please listen to our interview regarding engaging with non-English speaking patients and in particular the Roma community – https://www.youtube.com/watch?v=LSb18m06dfw

July 2021 – “The Roma community we spoke to clearly did not Trust they could receive good care remotely and we felt that Trust needed to be earnt through more positive experiences of remote care within the community. Individuals are more likely to initially trust, and listen to, others from within their community than listen to us (!), especially respected others. ”

Question – How transferrable do you feel your findings were to other groups?

Answer – The issues that the Roma community face are well acknowledged challenges that other minority groups face, such as poverty, culture and language barriers, often transient, digital exclusions issues (not being able to afford phone contract for example). However, the Roma community may well be unique in some of the ways as they are such a tight knit community and they prefer to deal with people from within their own community, for example they would prefer to have advocates from within their community.

The issues that Roma community raised did echo findings we have heard elsewhere; although we hadn’t come across such an overall negative response before. We were struck by the fact that only 1 participant had actually tried a video consultation and it seemed the overall view of video consultations was influenced by experiences of phone consultations during the pandemic. It was last July (July 2021) and at that point in time the patients just wanted to be able to see their clinicians face to face, they felt that ‘remote’ had been forced on them and they wanted choice. Choice has been a constant theme that has come out of various other focus groups and interviews in the past; as well as a concern that a clinician might ‘miss’ something whilst working remotely. The Roma community we spoke to clearly did not Trust they could receive good care remotely and we felt that Trust needed to be earnt through more positive experiences of remote care within the Roma community. Individuals are more likely to initially trust, and listen to, others from within their community than listen to us (!), especially respected others.

To add to this, from our patient feedback surveys we have found that when our non-English speaking patients have been able to use video consultations, the feedback has been generally positive. For example; 24 of 25 respondents who completed our feedback survey in Spanish said they would like to continue video consultations in the future, and 24 of 29 respondents who completed the survey in Bengali. In general we find that video consultations have been well received with patients, with an overall 83% of patients who would like to continue using it.

Dec 2021 Update – project continuing into 2022

The project was originally due to complete in Dec this year however not all problems are solved in 8 months! Implementation of change ideas has been relatively slow, however changes planned are rooted in the learning we have gathered so far and involving / led by the people who are part of the system and able to sustain longer term. This work will be ongoing beyond this project as this is a rapidly changing area requiring ongoing continuous change.

Only the project lead was funded by the project grant and will be staying on unfunded for the immediate future and will review this again in a few months, with the plan to hand over entirely to the rest of the team.

Outputs so far (related to our aims) –

Aim 1 – Measure and understand the uptake of advocacy within non-English speaking communities locally

Completed –

• Advocacy activity data compiled; trust wide and in the Renal clinic, for different types of consultations
• Process mapping exercise for the advocacy booking process
• Admin team survey
• Renal clinician survey about use of interpreters March 21

Ongoing – currently ringing patients to understand more about their options and choices regarding type of appointment and use of advocacy. Also adding to the advocacy activity data.

Aim 2 – Explore the experience of video consultations from perspectives of non-English speaking patients, local communities and staff

Completed –

• Roma focus group
• Advocacy staff focus group

Ongoing – Renal clinician survey, currently repeating survey from March 21.

From working with others we also have access to a large post video consultation patient survey (including surveys translated into 5 language other than English) and a relevant MSc project patient and staff interviews.

Aim 3 – Co-design and test the most promising change ideas with a cross-sector approach to addressing barriers and enhancing access

A core diverse group have met regularly to steer the project and construct a driver diagram using above learning. Change ideas have been prioritised using an impact / effect matrix. PDSA cycles have been worked on collaboratively.

PDSA 1 – Advocacy booking process: Renal team set up to use a generic login account on the advocacy booking portal, with a generic email address. Flyer circulated to all Renal admin staff with clear instructions for use.  RESULT – greater numbers of admin staff are booking advocates and find the system easier to use (anecdotal), they have access to each others bookings, booking requests are more standardised and complete.

PDSA 2 – IN PROGRESS – Updating advocacy booking portal to include new prompts for specialty, type of  appointment (phone, video or face to face), patient phone number etc

PDSA 3 – In PROGRESS – Pre-calling video patients to offer digital assistance; to ensure patients are aware of appointment details, develop relationship and trust, offer support, increase confidence to take part in VC, capture learning and signposting. (Explore possibility of changing phone to video?)

PDSA 4 – IN PROGRESS – Ensure advocates re-booked for follow up appointments, when needed; potential future advocacy role and pursuing the idea of a flag on Millennium to identify patients in need of an interpreter

PDSA 5 – IN PROGRESS -Awareness raising with clinicians; knowing advocates can be booked for VCs and that administrators know how (repeating clinician survey from March 21)

Driver Diagram (Sept 21)

Q exchange project driver diagram 080921 (PDF)

Summary update

We have a diverse working group of stakeholders, meeting fortnightly, that have been key to progress so far. The group has collaboratively clarified scope, chosen speciality, and used several quality improvement tools to plan and drive the project. We have sought to bring together other individuals and teams who are working on related projects to share resources and knowledge, for example the Barts Health COVOG equity group (patient and staff survey, activity data analysis) and interviews from a staff member MSC project.

Activities completed –

• Clinician staff survey
• Roma Focus Group discussion (13 non-English speaking participants; translated into Romanian and Polish)
• Process mapping exercise for advocacy booking process, with wide representation
• Focus group discussion with the Health Advocacy team at Barts Health
• Post video consultation patient survey analysis
• Set up and tracking progress on Life QI
• Established collaborative driver diagram and impact / effect matrix to priorities change ideas

PDSA cycles

Following the above activities, and knowledge sharing, we have currently prioritised 5 PDSA cycles. These are as follows;

PDSA cycles 1 & 2. Advocacy booking process; to provide greater access to the advocacy booking portal, standardisation of information on requests, awareness raising and improving communication. Update:

• Renal team now set up to use generic login account on the advocacy booking portal, with a generic email address. 28 team members identified and sent details of new login details with instructions on how to use. Simplified flyer distributed to staff 16/09/21. Positive feedback received from a few members of staff 16/09/21.  11 bookings successfully placed using the generic email address in the first couple of weeks. Further process measures will inform progress.
• Update the advocacy booking portal to include new prompts for specialty, type of appointment (phone, video or face to face) etc. A request for this update has been made.

PDSA cycle 3. Pre-calling patients prior to outpatient’s appointment to offer advocacy assistance and digital assistance (patients need to be identified as having potential advocacy need). The purpose is to ensure patients are aware of appointment details, develop relationship and trust, offer support, increase confidence to take part in VC, capture learning and signposting. Explore possibility of changing phone appointments to video. Update:

• Advocacy staff have been trained to provide pre-calls and outcomes sheet agreed.
• We have had problems identifying suitable patients. Project lead is currently gaining permission for access to patients records. Plan start ringing patients in early October.

PDSA 4. Advocacy and clinician training in dynamics of a 3 way consultation online, tips and tricks; to learn from our existing advocates and clinicians and patients who have done video consultations (and patients); what surprised them, what do they wish they had known, how best to handle the dynamics of a 3 way online consultation and improve patient experience. To also draw on other existing resources. Update: Focus group with the advocates took place on Monday 20th Sept. The focus group has highlighted other issues and important actions, this may well change the focus of this PDSA.

PDSA 5. Working with Roma community to develop a more desirable and accessible VC service; to do an appreciative enquiry working with 2 or 3 members of the Roma community; what is good about Video Consultations and how can we make it more desirable, as well as what external resources can we plug into to make it more accessible? Promote the outcomes within the Roma community through community members.  Update: We would like to take this forward however due to the time frames of this project this PDSA cycle recommendations will be handed over to other groups in the Trust.

Further detail on what we have learned so far –

Advocacy activity data

As anecdotal evidence suggests, there has been a large reduction in advocacy activity during the pandemic; however this did vary across services. The data below shows a much larger decrease in activity in the Renal clinic compared to Diabetes.

Jan 2020 – April 2020 (pre-pandemic to early pandemic): Renal 151 advocacy requests, Diabetes 244 advocacy requests

Jan 2021 – April 2021 (year later): Renal 45 advocacy requests, Diabetes 227 advocacy requests

Clinician survey (March 2021)

126 clinicians responded to a staff survey about the use of advocacy during the pandemic (March 2021). The survey revealed that only 50% of staff knew how to book an advocate for any appointment and only 28% knew how to book an advocate for a video consultation (similar for phone). 48% of staff think they have used advocacy less during the pandemic and 38% said they have had an appointment recently where they would have liked an interpreter but didn’t have one.

Reasons why advocates have been used less during the pandemic;

– Less appointments overall and particularly for those who don’t speak English (who struggle to engage with remote consultations) ‘patients who attend online tend to be more literate’

– Staff believe it to be challenging and time consuming to include advocates in remote consultations, particularly video ‘I don’t know how and don’t have the time to find out’, ‘It’s enough of a faff getting video to work’

– Relatives are more readily available to assist with translation when the patient is at home

– Staff tend to use language line moer for phone consultations, rather than the hospital advocates (and there has been a big increase in phone consultations)

– Some other specific issues reported including; advocates knowledge of how to join AA calls, advocates having technical issues connecting or don’t show up; poor call quality with more people; advocate contact details not accessible; needing an advocate immediately; problems with access to booking system

– Note: Dynamics harder with a 3 way consultation on video; interpreter doesn’t always get chance to translate

Focus group with Bilingual Health Advocates (Sept 2021)

Attended by 3 health advocates and the advocacy manager. The health advocates had significant experience of using attend anywhere. The advocates considered video to be much better than phone and would like to see all phone appointments replaced by video for non-English speaking  and BSL patients. They felt some clinicians were reluctant to use video because they considered it more time consuming than phone or there was a lack of awareness of attend anywhere (AA) and how to include interpreters in AA consultations.

They felt that they were far less effective over video compared to face to face; over video they felt they were ‘acting purely as translators, rather than advocates’. For face to face appointments the advocate normally sees the patient in the waiting area and can chat to them before hand; they then sometimes chat afterwards and the patient asks additional questions and the advocate can hand over additional information. On attend anywhere the ending is very final and there is no opportunity for the ’questions patients frequently ask on the way out’! ‘The human factor is missing via video’. They also miss the body language which helps them understand how the patient is feeling.

Suggestions provided by the advocates

1.     Have advocacy contact number on appointment letters – patients often can’t read their appointment letter and hence don’t even know their consultation is via video

2.     Providing pre-calls for patients – Gloria checks patients known to her on CRS to see when their appointment is coming up and phones them in advance to check they know the details and to ensure she is booked (which she may not be otherwise)

3.     Advise clinicians to try and keep to the appointment time when an advocate is booked if possible (or it may make it difficult for the advocate to attend)

4.     Advise clinical team to contact advocates about any last minute changes – they may well still be able to attend!

5.     For advocates to have 5 mins with patient before their appointment – This can help them go through concerns and the questions they wish to ask. They can also talk about how different an online call is; giving the advocate chance to speak; realising the end of the call is very final and the need to ask all their questions. Providing moral support and access to any further information the advocate might have.

6.     Communication – consistent exchange of contact details between advocate and clinician

7.     Advocates to have access to list of patients who have an attend anywhere appointment

Roma focus group discussion

13 members of the local Roma community attended an online focus group. 6 participants spoke Romanian (3 men and 3 women) and 7 Polish (1 man , 6 women), they all had little understanding of English and conversations were translated in two separate break out rooms.

There was a strong consensus that most people in both Romanian and Polish speaking communities prefer face to face appointments (rather than video or phone) and there was a frustration that things had not returned to ‘normal’ now restrictions were being lifted.

Literacy and language issues make it particularly difficult for remote consultations and there have been particularly poor experiences of phone consultations. There was little distinction between phone and video; only one participant had any experience of a video consultation. Many people in the Roma community also experiences digital exclusions issues; they often don’t have the internet (can’t afford a smart phone contract) or find that technology is not reliable or can’t ‘cope’ with technology.

Trust seemed to be an issue. Trust in interpreters but also that video consultations could be for their benefit; they believed that remote consultations were for the benefit and convenience of the Doctor / nurse not the patient.

Suggested actions following this focus group –

– Ensuring patients are given a genuine choice between a video appointment and face to face appointment

– Enable patients with no, or limited, access to the internet or technology to access community based interventions to address digital exclusion, such as digital access hubs or equipment loan (sign posting through local resource directory)

– Increasing understanding of the benefits, as well as potential negatives, of video consultations in particular community groups (giving voice to those who have tried it).

– Enable patients to request interpreters more easily e.g. via text response

– Review the number of available interpreters (following patients request to increase the number)

– Confirm with the community if text and email communication is preferable to letter (this came from one comment which needs to be confirmed); do they receive regular text reminders currently?

– Further relationship building in the community and developing Trust in services.

Process mapping exercise

See process flow chart that summarises the process discussed in this meeting; and also the flyer for staff that was developed as part of the following PDSA cycles.

Staff across the Trust inputted to development of the process flow chart, including; administration staff in central appointments, administration staff in the Renal clinic, Renal clinic management, Renal clinicians, advocacy team, hospital QI team. The flow chart maps out existing processes.

Driver diagram

Working collaboratively and drawing on knowledge gained above as part of this project, as well as existing knowledge, the following driver diagram was constructed (attached). The above PDSA cycles have come out of these discussions and relate to the driver diagram as follows;

PDSA cycles 1& 2 relate to ’robust and smooth and clear administrative processes’, ‘clinician and admin knowledge and skills’ and change ideas 2.2, 3.2, 3.3 & 3.5.

PDSA 3 relates to ‘advocacy contact with patients in advance of video consultation’ and change ideas 1.2 & 1.3.

PDSA 4 also relates to ‘knowledge and skills’, minimising risk and change ideas 2.1, 3.3 & 4.2

PDSA 5 relates to the wider digital exclusion issues.

What could others learn from our experience of working with a range of stakeholders and collaborating across boundaries (geographical, professional, sector) – including what is working well and any challenges you have faced?

As expected, the project has really benefited from having a diverse range of stakeholders, including patients, engaged and working together; from all parts of the system. Achieving this is difficult when people are currently under so much pressure.

The project has required a lot of ‘ground work’ i.e. relationship building, understanding the pressures that people are under and developing trust so that people don’t feel judged but are keen to work together to make improvements. It has taken time to understand who the gate keepers are (e.g. for access to data, and access to teams), how teams and individuals prioritise work and how you can engage effectively with them and get work done jointly, when there are so many necessary competing priorities.

What has worked for us –

– Fortnightly project team meetings for 1 hour held online with a diverse range of staff. Online meetings have helped people from different sites regularly meet.

– Ensuring team leaders / managers understand the purpose of the project and are engaged; therefore giving permission to junior members of staff to devote time to the project.

–  Being aware of other related initiatives, particularly within the Trust and local community. There is currently a lot of interest in addressing health inequalities and several other initiatives have started that overlap with what we are doing, including a student project. We have therefore sort to bring all the related work together by including individuals in our team meetings, joining other groups and including the findings of others when making plans.

– Engaging in other Trust groups with shared objectives. Related to the above, online meetings have enabled the project lead to ‘drop in’ on lots of other existing meetings to update on the project and to gain further input e.g. joining the existing health advocacy weekly catch up meeting online has been a great way to keep crucial communication going with the team without expecting them to attend lots of new meetings, or respond to lots of emails. As time has progressed and ‘buy in’ has developed the advocacy team now also attend the project team meetings.

– Going to where people are physically and meeting them in person. Some informal conversations in person have also been incredibly helpful. For example, an email asking for feedback from 28 members of staff was only answered by two and the knowledge gained from those answers was very limited. By finding out where staff are based and ‘popping in’ has helped develop relationships and gain far more rich insight than would have been possible over email or phone. People were happy to stop and talk in person.

– Going where the enthusiasm is! We presented the project to a range of community groups and asked for feedback. We only heard back from the Roma community group and hence have started by working with them and drawing out learning for others. The Roma group faces particular challenges of digital exclusions and we can learn a lot from them. Similarly we have focussed on working with the Renal clinic where there have been enthusiastic staff to work with us. Starting small!

– The importance of working with patients is well recognised and in our project hearing the frustration of patients over remote consultations has been key to understanding that even if we theoretically ‘fix’ problems of digital exclusion, patients want choice and the disadvantaged patients we spoke to, with poor understanding of English, are not currently going to choose remote consultations (video or phone), given their experiences during the pandemic. This work touches on a lot of wider issues of Trust and engagement with the hospital / NHS and the impact of the pandemic on relationships with health services.

– Providing volunteers with a contribution towards their time (a voucher). Recognising that people are busy and their time is valuable is important. We have found engagement is much better when people can see an immediate mutual benefit.

– Keeping people’s interest and momentum by ensuring we actively involve them in meetings and actions.

– Dedicated time. We have benefitted from the Health Foundations funding which has allowed the project lead to have dedicated time to organise activities, working long side others closely. At the moment the project lead is also gaining permission to access trust systems independently (clinical records and advocacy booking system), to lessen the burden on others. Although this is not sustainable at the end of the project, it can be useful for tracking measures and progressing the project so we can demonstrate if the changes tested are worth the investment of time (or potential reorganisation of roles) by others.

Next steps for your project over the coming months?

–  To progress PDSA cycles 1 – 3.

–  Include recent learning in plans (particularly the results of the recent focus group with advocacy staff and informal feedback from the Renal admin team); modify (possibly abandon) PDSA cycle 4 accordingly.

How can the community get involved in your project?

It will be helpful to hear about other projects within the community that are addressing digital inequalities or others learning from video consultations (particularly changes in dynamics of consultations online) and the impact of the pandemic on relationships between patients and health services.