Health inequalities case studies

Case study one: Understanding mental health diagnoses with consideration of cultural beliefs

This case study examines how support is provided to a non-English speaking family, with consideration of their cultural beliefs around mental health.

What was the clinical challenge?

In an adult mental health context, we worked with a young South Asian male patient diagnosed with schizophrenia and, subsequently, autism. His parents spoke Hindi and lacked awareness about mental health illnesses, as well as how to navigate through the NHS system.

How did you gather the information that you required?

In order to help meet the needs of the local population, the service has employed a Band 4 speech and language therapy assistant, who can speak several South Asian languages. Both the assistant and the therapist working with the family are Indian and were able to use their own experiences, alongside knowledge of appropriate vocabulary and possible perceptions of mental health in this community.

How was the information you collated used to improve the care for the individual/community/group?

• The home language of the family, Hindi, was used with awareness that vocabulary choices when translating into other languages can be challenging. For example, the translation of ‘mental health’ can be closer to ‘crazy’. The solution, rather than use Hindi to label, was to describe in detail the symptoms of autism and schizophrenia and continue with those labels.
• Being aware that there is often a stigma that surrounds mental health in this community, we were prepared that parents could be upset and have some difficulty around acceptance. Additional time was allowed for a face-to-face appointment with parents. This provided an opportunity for discussing topics relevant to the family such as stigma within the community, what to say to extended family, beliefs of the ‘evil eye’, and worry that parents may have caused the mental health needs.
• The SLT and assistant’s experiences and understanding were shared with the ward staff so that care could be tailored to the patient and family. The consultant on this particular ward allowed the SLT and assistant to take the lead.

What was the outcome?

The family were given the information in the language and context that they could understand and were also given the time and opportunity to discuss their specific concerns around stigma and their community. Staff worked together to ensure individuals with relevant experience and cultural sensitivity were able to use and share their knowledge. This way of working continues to be embedded in the care of all individuals in this setting.

Alpana Marwaha

Case study two: Promoting public health messages that matter to adults with learning disabilities

What was the clinical challenge?

People with a learning disability are more likely to experience health inequalities (NIHR 2020), so supporting this group of people to be able to access and implement public health information is particularly important. Up to 90% of adults with a learning disability experience some form of communication difficulty (RCSLT 2013) and literacy levels among this group are known to be low (All party parliamentary group for education 2011).

How did you gather the information that you required?

The learning disability speech and language therapy team worked with a group of experts by experience (the Southampton community learning disability team service user group) to identify public health issues that matter to them. These issues included: physical activity, healthy eating, oral hygiene and mental wellbeing. The experts by experience worked jointly with the speech and language therapist (SLT) and SLT assistant on this piece of work. They spent three sessions on physical activity, and three sessions on healthy eating. These sessions involved:

• Understanding key messages relating to these topics (eg aiming for five portions of fruit and vegetables a day, alongside being active every day).
• Reviewing three apps relating to physical health and three apps relating to healthy eating on an iPad.
• Using talking mats to review the accessibility and usefulness of each app (rating each app on usefulness of information, amount of information, images, text, ease of use and how engaging/interesting it was).

After reviewing each app, arranging a road show event, visiting a local college/day service, sharing the key public health messages and demonstrating the apps, they rated favourably to other people with a learning disability. The roadshows were popular with attendees and a lot of people were interested in the apps. There were between four and fifteen people attending each roadshow event.

How was the information you collated used to improve the care for the individual/community/group?

The group reviewed digital apps relating to areas that might be useful in supporting people with a learning disability keep physically active and eat healthily. They focused on each topic for three sessions (one session per month). The group reviewed the usefulness and accessibility of six different apps while learning more about the public health messages associated with them. The group then shared their learning with their peers at day services/colleges.

What was the outcome?

At the start of this study, none of the members of the Southampton Service User Group had ever used an app to help to support their health, although some members of the group were familiar with the term ‘apps’. Members reported that they would not use the internet as a source of health information. Awareness of public health related messages was generally low. For example, one member of the group thought we should aim to complete thirty minutes of exercise a week. This knowledge was raised, by the end of the work, he said twenty minutes a day.

The group rated 33% of the apps reviewed as useful and accessible. The apps they could relate to and incorporate into their daily routine were rated favourably. Barriers to accessibility included: issues with images, text size and overall ease of use.

Following this piece of work all members of the Service User Group reported that they were more likely to use the apps to support their health in the future. There was also an increase in the groups understanding of public health messages relating to physical activity and healthy eating. The group reported really enjoying the roadshow events particularly sharing their learning with other people with a learning disability and demonstrating the different apps.

Were there any challenges you had to overcome?

Not all apps available to support with public health are viewed as accessible by people with learning disabilities. However, there are apps which are rated as being accessible and clinicians working with adults with learning disabilities should signpost people to them and support them to access these to enable them to have the opportunity to manage their own health.

Rachael Middle, Anna Raby, Sophie Woodford, Matthew Horton

Case study three: developing a modified diet suiting the religious and cultural preferences of the patient

What was the clinical challenge?

I received a referral for Mr A who was dysphagic and, following inpatient videofluoroscopy, had opted for an International Dysphagia Diet Standardisation Initiative (IDDSI) Level 4 pureed diet, which reduced the degree of aspiration. The referral requested I support setting Mr A up with these recommendations when home.

The referral stated that Mr A spoke Tamil and that he had possible mild memory and cognitive impairments. It also stated that he lived alone and had one daughter who spoke English, but phone calls with an interpreter revealed he was now living with his other daughter “P” who spoke Tamil, not English. P prepared Mr A’s meals.

Since coming home, Mr A had been having a subset of his meals which would blend into puree but it made him “feel sick” and reduced his diet intake, leading to weight loss. He said the doctors in hospital told him to start having pureed food so he had carried on. He wasn’t sure, or couldn’t remember, why he was having pureed food.

Mr A and his daughters then asked me about a range of foods that he wanted to eat and which IDDSI level they would be. I knew almost no Sri Lankan foods, aside from one or two items I happened to have had from a local Sri Lankan takeaway.

How did you gather the information that you required?

I wrote down the food names and we used Google image screen sharing, with family members holding items to the camera and describing items with the interpreter, to help me to understand exactly what presentation of the foods he was asking about. We agreed I would research options and come back to them with ideas of which foods fell into which IDDSI level.

I couldn’t find any IDDSI Level information sheets with examples of Sri Lankan foods online. To get this information myself, I tried some of the foods from my local Sri Lankan takeaway, spoke to the takeaway owners about the other foods, and continued to research different ways of preparing the foods online.

How was the information you collated used to improve the care for the individual/community/group?

I presented the options again with the foods categorised into IDDSI levels with pictures and explanations of which features made them this texture. I made it clear which features made the foods correspond to each level, in order to help to try and generalise the concepts for other foods Mr A and his family eat.

What was the outcome?

Mr A expressed that he felt he would eat enough and enjoy meals made to the IDDSI Level 6 soft and bite-sized texture. Across the next few weeks, I phoned Mr A and P with an interpreter. We discussed how to: aid P in preparing meals, answer questions about further foods, monitor Mr A’s diet intake and chest status, and check he found the texture remained within his wishes across time.

This clinical case made me aware of the gap in resources for non-White British/American patients and led me to create a website for Swallow’s Kitchen for SLTs to make these info sheets with service users/multidisciplinary team (MDT) staff/interpreters etc. and share with other SLTs. I am making my first leaflet with a nursing home that has a large cohort of patients who eat traditionally Indian foods, and have an offer from the Sri Lankan takeaway to continue to make the leaflet for Sri Lankan foods.

Do you have any anonymised clinical data that you could share, to illustrate your case (eg language samples, observations, swallow test results and so on)?

You can see some examples of Sri Lankan foods I classified (PDF).

Were there any challenges you had to overcome?

Not being familiar with the foods the patient was asking me about and lack of resources for me to find this information was a real challenge. It felt embarrassing and almost discriminatory not to be able to answer these questions, given I knew if a patient/family member of a similar cultural background to myself had asked I could answer then and there myself and easily email them various IDDSI leaflets with multiple examples from within their usual diet. I also knew to be mindful of how one Sri Lankan family prepares food may differ from another.

There is a big gap in SLT resources for non- White British/American patients and it’s possible individual SLTs may be doing this work in isolation from each other, which is why I have started the website.

Do you have any tips for other members in similar situations?

Do the research! We owe it to our patients of other cultures to treat them equally to our patients who eat the traditionally British foods we know well. If you can, please get involved with Swallow’s Kitchen so we can try and narrow the resource gap. There has been lots of interest for Swallow’s Kitchen on Twitter and in CENs, however few other SLTs/student SLT have volunteered to make a leaflet at this point. It would be great if others were aware of this and in a position to make more leaflets!

I think this is important to facilitate more equal access to information, prevent delay to care for patients of other backgrounds and to reduce the chance of misunderstanding, which would otherwise lead to patients of other cultures being given foods that have not been agreed as in their best interests. I hope leaflet-making can be used as student placement projects and can also be used as opportunities to help patients, families, carers and others who collaborate on leaflet-making understand (their) dysphagia better.

Kerry Corley Brent inpatient and community neurorehabilitation team, London North West University Healthcare Trust.

Case study four: Developing a service to recruit bilingual co-workers acting as linguistic and cultural translators

What was the clinical challenge?

We had lengthy waiting lists in the speech and language therapy service, and we had a vacant full-time SLT post. At the same time, many parents of children, particularly the mothers, and older adult patients did not speak English and I felt it was impossible for us to deliver services without interpreters, alongside the necessary information regarding cultural differences. We had worked with the interpreter unit but we needed more interpreter time than they could offer, and we needed to train the co-workers specifically to work with our client groups.

How did you gather the information that you required?

I found out more about the local populations (Oldham) – it had (and still has) one of the highest South Asian populations of any town – 18.1 % (England total 14.3%). For our caseload, I needed both Urdu and Bangla speakers in particular, who could also translate our information leaflets. I sought advice from an existing NHS interpreter / translator unit, whose services I had used before too.

How was the information you collated used to improve the care for the individual/community/group?

I converted a vacant full-time SLT post to two bi-lingual co-worker posts.

What was the outcome?

This transformed our services. Bilingual co-workers are needed if we are to provide an effective service to ethnic minorities. Following the success of this, I later obtained funding for another co-worker and brought in some minority ethnic interpreters for other groups such as the Pashto-speaking Afghan population.

Case study five: Supporting informed decision-making for eating and drinking at risk

What was the clinical challenge?

In a community adult SLT setting, I received a referral from the acute hospital team for “Mr A” who was deemed to be “feeding with acknowledged risk of aspiration” across consistencies. The referral told me in hospital that Mr A had opted for the diet texture which reduced the degree of aspiration on inpatient videofluoroscopy – the International Dysphagia Diet Standardisation Initiative (IDDSI) Level 4 pureed diet. The referral requested I support setting Mr A up with these recommendations when home.

The referral stated that Mr A spoke Tamil and that he had possible mild memory and cognitive impairments. It also stated that he lived alone and had one daughter who spoke English, but phone calls with an interpreter revealed he was now living with his other daughter “P” who spoke Tamil, not English. P prepared Mr A’s meals.

Since coming home, Mr A had been having a subset of his meals which would blend into puree but it made him “feel sick” and reduced his diet intake leading to weight loss. He said the doctors in hospital told him to start having pureed food so he had carried on. He wasn’t sure, or couldn’t remember, why he was having pureed food.

The initial aim was to ensure Mr A and his family understood his needs and could make informed decisions about his diet. During discussions, different cultural opinions on the roles of professionals also emerged.

How did you gather the information that you required?

Based on the referral, I knew that I needed to contact Mr A with a Tamil interpreter and that he would likely benefit from short and repeated information. It was also important to personalise the information to Mr A to aid him to relate the options to concrete options in his life. In previous telehealth appointments I gathered examples of which Sri Lankan foods Mr A enjoyed eating and ensured I understood how these would usually be prepared for him, such that I could categorise them in IDDSI levels and present the options visually to Mr A in a powerpoint to support decision making ( see case study example 3).

How was the information you collated used to improve the care for the individual/community/group?

We arranged a video call with Mr A, his daughters, and a Tamil interpreter. I shared videofluoroscopy findings through a presentation including short written sentences the interpreter could translate, and pictures supporting what I was saying, eg of a videofluoroscopy, of hospital, of usual IDDSI meal examples.

After the information was given, questions asked if he had understood and retained the information and had capacity to make the decision, alongside the options offered; Mr A asked me what he should do. I explained it was his choice, but this led to the family and interpreter laughing and saying, “you’re the doctor here, you tell him what to do”. I explained the roles within mental capacity assessment and said we could make the decision “together” balancing the costs and benefits of the options.

What was the outcome?

I was clear about what the roles were and took a “meet in the middle” approach saying we’d decide “together” what to do. I continued asking questions for Mr A to express his opinion such that we were able to have a constructive discussion about appropriate diet and meal preparation (for further information, read case study three).

Do you have any tips for other members in similar situations?

Use an interpreter and don’t rely on family members. Check the language and dialect before requesting an interpreter. It can be helpful to have written sentences for the interpreter to interpret for some contacts, for example, here, key information I’d prepared in a simplified form.

Consider how to balance different cultural norms of your roles. I did this by trying to be transparent of what role we each had in the legal framework of mental capacity assessments.

Is there anything you would do differently in future?

It would be useful to have more guidance on how to best manage cultural differences in mental capacity assessments. I don’t know if there was a better course of action for managing this. I could have done as asked and expressed what I would do in his position. However, I didn’t feel comfortable doing this given this is not part of the role I learnt that an SLT has in these mental capacity assessments.

Kerry Corley, Brent inpatient and community neurorehabilitation team, London North West University Healthcare Trust.

Case study 6: health screening in a youth offending service

What was the clinical challenge?

Our youth offending service (YOS) deliver services to children aged 10 – 18. The children receive routine screenings from specialists based within the YOS, which contribute to the essential AssetPlus assessment overseen by the Case Manager (CM). Many of the individuals within the YOS population are at increased risk of experiencing health inequalities, eg due to poverty; poor social support; poor health literacy; being from some under-served ethnic/cultural groups that are over-represented in the youth justice system.

During the COVID-19 pandemic, the speech and language therapist (SLT) and restorative justice officer (RJO) identified a gap in team communication that had been created by the pandemic. Furthermore, face-to-face appointments with children were no longer possible.

There was no standard process in the team for coordinating the specialist screenings that take place at the onset of the child’s involvement with YOS and as such, their experience varied depending on which CM they were allocated to. Subsequently, differences in each CM’s operational approach and the impact on engagement became more apparent.

Children and their families were reporting being overwhelmed from poorly coordinated separate phone contacts from specialists, eg several hours of screenings attempted on the same day; or when families had not yet spoken to the CM and/or had not been informed of the screenings, specialists had attempted screenings without providing reasonable adaptations due to a lack of information, eg interpreters, avoiding potentially triggering/retraumatising topics or arranging COVID-19 compliant face-to-face meetings for those experiencing digital poverty. This led to inequitable health outcomes for the clients.

Incidents involving children becoming distressed at repeating traumatising history were common.

How did you gather the information that you required?

The SLT and RJO raised the issue with other health specialists in team. The team agreed that in order to be trauma-informed, it was necessary to clarify the intake pathway, specify that information must be shared prior to specialists contacting the family and outline the coordinating role of the CM.

The SLT approached the head of YOS who agreed and the change was introduced to CMs. The SLT checked with the NHS line manager and information governance team that information sharing from health system for the purposes of safeguarding was appropriate at this early stage of client input.

How was the information you collated used to improve the care for the individual/community/group?

The head of YOS formalised and distributed new intake pathway process requiring virtual ‘Case Coordination’ meetings as mode of information sharing.

Head of YOS introduced performance management aspects to enforcing Initial Case Coordination Meetings in September 2020 after inconsistent implementation across CMs

What was the outcome?

There were 60 initial case coordination meetings carried out between August 2020 and end of March 2021.

Information regarding SLCN; physical and mental health; family factors including contact with social care; education and SEN; substance misuse; current and prior offences as well as contact with local child criminal exploitation agencies able to be shared across team at beginning of contact with service.

Feedback from families and specialist team has been positive, who feel screenings are better prepared for and engagement with children and families is improved.

There are numerous examples where screenings have been individualised to suit the needs of the client and address health inequalities:

• Adapting to the needs of the family improved overall engagement, addressing where attitudes towards health providers and the youth justice system (YJS) were acting as barriers to effective information gathering by professionals and equitable access to positive health outcomes for the client.
• Interpreters booked for parents who require support accessing the complexities of the YJS and may otherwise have difficulties accessing partner health services based on ethnic and cultural differences.
• Identification of families experiencing systemic pressures due to parental mental or physical ill-health and identifying most convenient way for team to contact them to remove barriers to positive experiences of YOS health and specialist services.

Were there any challenges you had to overcome?

Initially the specialist team attempted to initiate the service change by introducing the idea for discussion at a whole team meeting. The emphasis was initially to allow for better time management in regards to scheduling and meeting screening deadlines for the specialists within the YOS team. This did not create buy-in from the case managers who would ultimately be responsible for coordinating the meetings and the feedback from some was that it would be another task to manage on top of having to adjust to the pandemic.

However once this was fed back to management, they were responsive and were able to provide direction; clear protocols; wider strategic rationale in line with the Hounslow YOS objective to become a trauma-informed service; and structures for performance managing CMs to ensure they were implementing the change.

Is there anything you would do differently in future or ongoing learning that you want to share?

Future plans involve developing more structured outcome measures to capture the positive impact of the meetings. This might involve approaching parents and children for their feedback about the screening process as well as comparing DNA/unsuccessful screening contact information before/after the meetings commenced during the pandemic

Next time a change in protocol is suggested, baseline information about how the change will create more resources for the children and young people (eg SLT intervention time) for the children should be presented/emphasised to promote initial buy-in from the CMs.

Up to this point, implementation oversight has focused on whether the meetings are carried out consistently across the team. Future oversight may seek to capture the quality of the meetings, ie whether the CM has had an initial discussion with the family prior to holding the meeting so that current circumstances may be shared with specialists; whether information about co-defendants has been readied for sharing with the RJO.

Management are also considering how to incorporate a similar model for exit planning at the end of a child’s journey with the YOS.

Jill Brennan,  Highly specialist speech and language therapist – YOS specialist, Hounslow Youth Offending Service

Ruth Hall Restorative justice officer, Hounslow Youth Offending Service