North East Connected

Experts call for better access to healthcare for patients from different cultures, saying it can be implemented by championing community voices and working collaboratively across service delivery

With Britain recognised as one of the most culturally diverse countries in the world, experts joined together in a recent webinar, to discuss the barriers different cultures face within the healthcare system.

In Connect Health’s latest Change webinar, leading healthcare experts revealed the urgent need to embed feedback from different cultural communities to facilitate collaborative change while identifying gaps in service delivery and calling for organisations to instigate honest dialogue about inequalities.

The event was chaired by Mini Mangat, Head of Patient Engagement at Connect Health. Providing opening remarks, Mangat said: “There are stark differences in health outcomes across the UK, with a gap of almost 19 years in healthy life expectancy between the most and least deprived areas in England. Inequalities in power, money and resources, both at local and national levels, can make people’s daily life more challenging and in turn this can make people more vulnerable to poorer health. 

“Covid-19 has shone a light on inequalities and highlighted the urgent need to strengthen action to prevent and manage ill health in ethnic minority communities.”

Guest speaker Sandeep Saib, Mental Health Advocate, Philanthropist and public speaker, provided the first of three patient voices.

Saib said: “I was diagnosed with anorexia nervosa, body dysmorphic disorder and OCD in 2014 and I had a suicidal attempt in August of 2014. During my recovery journey, I’ve seen three therapists who tried their best to understand from my perspective as much as they could, but none of them, I’m sorry to say, were of an Asian background. I’m a woman, I’m British, I’m Asian, I’m Indian – I have all these different identities and I would have loved to have had someone to talk to that looked like me. 

“You’re dealing with very complex needs for each individual and it’s not a straightforward case. You’ve got to unpick each issue and find out what the core issue is in that person. Bearing in mind society, healthcare and the mental health domain have moved on and developed and I’m pleased to say they are so many fantastic charities out there now.”

Looking back on what she’s gone through, Saib continued: “I’m still going through my recovery, but throughout everything I’ve been through, I’ve obtained self-confidence and I’ve obtained a sense of self-empowerment. I put myself out there to find out more about the help that is available and that’s what I tend to do in terms of my advocacy work – to champion and be the voice for people of minority backgrounds for mental health issues and do what we can together.”

Providing another patient viewpoint was Jyoti Jadav, Patient and Health Care Professional. Jadav said: “After two years of being in and out of hospital from feeling weak and fatigued, I was finally diagnosed with IgA Nephropathy, where my body started attacking my kidneys.

“I eventually received a kidney transplant from a fantastic person who had sadly passed away. The whole experience was new to me and I faced challenges within my community. There’s a lack of awareness and knowledge about organ donation, especially in the Asian community. People feared what would happen to them and it was taboo. Some scholars and priests were saying some religions wouldn’t allow for organ donation and people judged by saying things like, ‘there’s nothing wrong with you, you’re being lazy. You’re walking, talking and smiling, so you’re fine’.”

Looking back Jadav continued: “As a physio and as a kidney transplant patient, I have real lived experience as a patient. Pain makes you feel drained. It hurts physically and mentally and it brings highs and lows of emotions, mood and depression. It’s so important to show a person they’re not on their own.

“Raising awareness of organ donation within different community groups increases the chances of finding an organ for people in need. Everyone should be made aware of organ donation and that giving a little part of themselves doesn’t mean that they will be at a loss, but that they are sharing a piece of them to save a life.”

Posed with the idea of personal experiences changing the way health professionals deliver services, Jadav added: “Once you’ve been a patient yourself, you know exactly how your patients are feeling. You understand that they’re experiencing pain and you understand the mental health side of things. You’re not just being a physiotherapist, you actually have this bond and you’re supporting them, empathising with them, and educating them. There is a difference – you understand the realness of being a patient.”

Naina Patel, a mother and carer provided the discussion’s final patient voice. Naina shared her emotional story: “I’m a carer for my adult son who’s 30 years old and has recently been diagnosed with psychotic depression. His problems with depression have been ongoing throughout his life and he has a pre-existing physical medical condition. The condition is quite rare and because of this, I don’t think the impact of it on his mental health is well understood.

“He’s a very resilient young man despite the tremendous amount of trauma he has experienced. After failed attempts to seek help from mental health teams, a GP, and a private physiotherapy service, I contacted adult social services and was pleasantly surprised by the friendly and understanding service. My son refused to go to the hospital voluntarily and eventually he was sectioned. I’ve heard horrible things about sectioning within Black and Asian communities and it was not a step that I took lightly at all.

“As a parent you feel helpless. You can see the illness, but the person with the illness can’t and therefore does not consent to receive help. Every day for the last couple of years has been tinged with sadness, absolute desperation and despair as you see your adult child deteriorate. I feel like something needs to change – the system needs to listen to carers’ concerns.”

Questioned on what advice she would give to other parents or carers in a similar position, Patel said: “I think you have to keep knocking on doors and if it is as desperate as my situation, you do have to think about sectioning. I found social services absolutely fantastic.”

Discussing best practice for tackling stigma was Kirit Mistry, Chair of South Asian Health Action. Mistry said: “Our current vision is really around engagement, so we’re creating conversations within communities to facilitate change. There are stigmas within certain conditions, so we need to engage and get people to talk comfortably. 

“We need to educate and make people aware of what support is available and to work on a one-to-one or peer level basis. With some of our current projects, as a small organisation, a lot of the doors were closed for us. The NHS and other organisations are really blinkered in terms of wanting to work on a culture sensitive basis. The powerful breakthrough has been working as an associate for National Voices Charity, as an organisation realised they needed to increase diversity and inclusion expertise.”

Exploring what steps can be taken to ensure stigmas are addressed, Mistry continued: “Make sure you have a clear plan. Reviewing your current organisation is key, to look at what diversity and inclusion looks like in terms of your patients, carers, and communities. It’s about being culturally competent when engaging with communities from different cultural backgrounds. Have an understanding of where they are coming from and what barriers they are going through. We need to create a safe space for people to be valued.”

When asked about how leadership teams should represent the populations they serve, Mistry added: “Racism is back on the agenda and I think a lot of organisations are now trying to look at it – they’re engaging more in the communities. But it starts with leadership and you can’t have one person trying to drive this. We need to see more diversity and people with lived experiences on organisational boards and we need to see a greater amount of people coming from different communities into professions and taking a role within these organisations. It’s about collaboration and working on honest dialogue about diversity.”

Mohammad Shoiab, Clinical Lead at Huddersfield and North Kirklees, Connect Health Pain Services, was the next speaker, exploring the connection between culture and pain and how access to services could be improved.

Shoiab said: “In my role I worked on a research project that looked into the influence of a patient’s culture on their pain perception. This research has translated into some real-world clinical changes in practice and service delivery.

“People learn the concept of pain, their perception of pain and how they express it, if at all, is learnt through life experience. How they were brought up and the way their life journey has led them to be, has a powerful influence. From this cross-cultural research, we know the description words that people use to express their pain and the perception of pain and pain control are culturally specific. People from different cultural groups may well appear to have developed the same pain presentation, but they may express the pain and feel the pain in very different ways and use different words to express the pain.”

Considering the current processes within the healthcare system, Shoiab continued: “If we know that people from different ethnic and cultural backgrounds experience pain differently, then why is everyone expected to respond to the same treatment in the same way? 

“There are ways to make things more culturally acceptable, such as allowing more time for explanation, ensuring that the patient is heard, and discussing expectations at the outset. Culture may influence the acceptability and appropriateness of treatments designed to impact cognitive and behavioural changes. As a result, treatments that have been developed by clinicians in one culture, may not necessarily be relevant or effective in another culture. We need to move away from a one size fits all approach and understand the cultural groups we’re working with.”

Questioned on how to be better at listening to ethnically diverse communities, Shoiab said: “At a service delivery level, we need to look at feedback and know where there’s gaps in provision. If a certain treatment’s modalities are only provided to patients in English, yet the local population is say 80% non-English speaking as their first language, then there’s a clear gap in the service provision and we need to try and improve the acceptability and access to patients in that local region.”

Showcasing findings from a recent cross-cultural research study, Priya Vaithilingam, Head of Research and Engagement, and Geoff Brown, Chief Executive, from Healthwatch Hertfordshire were next to address the panel.

Brown said: “There are 150 branches of Healthwatch nationally and our role is to be the independent consumer champion for health, public health and social care. A lot of the work we do is in partnership with community organisations and other voluntary sector organisations to ensure the voice of patients and communities is heard.

“We provide evidence to improve services and health and wellbeing. We gather feedback from communities and feed it back to commissioners within health and social care. Generally those organisations are very responsive to what we’re saying and they look to make improvements to make services better for patients and service users. It’s an opportunity, using your local Healthwatch, to give feedback perhaps if services aren’t being as culturally sensitive as they should be.”

Discussing the research, Vaithilingam said: Earlier this year, we launched two surveys with the Hertfordshire population – one looking into attitudes to receiving the COVID vaccine and the other looking at the experiences of people who had already received one dose of the vaccine. Over 1800 responded to our survey, but we found there was a limited number of responses from ethnically-diverse communities, so we scoped further research that looked at better understanding the views and experiences, specifically within Asian communities.

“In terms of the effects of isolating language, what we know from the research is that language and terminology is really important. We’re aware that ‘BAME’ is considered unhelpful as it homogenises diverse ethnic groups and encourages a single solution response to very complex issues. We also found that the term ‘vaccine hesitancy’ can also be unhelpful, as it doesn’t consider the complex issues that lead to reluctance to take the vaccine.

Exploring other themes that emerged from the study, Vaithilingam said: “Many respondents from Asian communities commented on having poor experiences with the news and media, with many feeling targeted by the media and believing there is sometimes a racist undertone. An example of this is how ethnic communities felt scapegoated, particularly at the beginning of the pandemic, and felt the media blamed these communities for the spread of the virus, due to living in multi-generational and sometimes overcrowded homes.

“One of the main learnings from the research is that we need to recognise the complexity and variation between different communities and understand the pitfalls of seeing Black and Asian communities as one homogenous group. There is a great perception that these communities are sometimes only engaged with when the agenda suits the government or the NHS and, at the moment, that’s particularly with regards to the focus around vaccine take up. What these findings have done is help us to think about designing an inclusive engagement model locally and to do this we need to utilise the knowledge and skills of community groups and leaders, but also recognise their challenges.”

The final speaker was Professor Gurch Randhawa, Professor of Diversity in Public Health and Director of the Institute for Health Research at the University of Bedfordshire. Professor Randhawa considered the journey to partnership working, saying: “It’s important to talk about ‘journey’, because I don’t think you can have partnership working which happens overnight. It’s not a static process, it’s a very dynamic process and it requires investment, patience and commitment.

“Looking at the whole debate about health inequality, firstly, I don’t think there’s a debate. We know health inequalities exist and we know that there’s ample evidence that exists between ethnic groups, within ethnic groups and a lot of it is also linked to social class. I’m a firm believer that we don’t need to commission any more research evidence on this, we need to crack on with action.”

Explaining a recent research study into the sensitive topic of consanguinity, Professor Randhawa said: “If you’re going to do research on sensitive topics, you need to do it in partnership with communities. When we designed the consanguinity study, we worked with local community leaders, councillors, and religious leaders. Firstly, to design the study, and then to ensure that people felt safe and trusted in sharing their experiences.

“If we really want to develop programmes tackling inequalities, we need to find a way of giving a voice to those people who don’t have a voice, so they genuinely have informed choices. We all need to look in the mirror and it’s about how do we solve some of these structural inequalities, because if we don’t have diverse staff at senior levels and even at middle grade levels, then why do we expect our policies and our priorities to be any different? I think fundamentally until we start to tap into these structural problems, everything else is tokenistic and lip service. You need diversity at the top to change the strategic direction of an organisation.”

When asked what some of the challenges of partnership working in tackling health inequalities are, Professor Randhawa said, “I think the problem is that there’s a rhetoric around co-design and collaboration. What tends to happen is providers in the public sector and voluntary sector have a model in mind and then consult on that model. That’s not co-design. Co-design is starting from a blank page and I think the challenge is that providers feel a loss of control and they feel nervous about doing this.”

During a panel discussion led by Mangat, all participants were asked to consider what one thing they would change to improve health inequalities across cultural boundaries.

Sandeep Saib, Mental Health Advocate, Philanthropist and public speaker:

There’s a big theme around collaboration here and empowerment, so I will leave it with that; collaboration and empowerment moving forward.

Naina Patel, a mother and carer:

I think it’s looking at the ways in which we can empower communities, and different communities within a particular ethnic group, on how they can take control of their own health.

Kirit Mistry, Chair of South Asian Health Action:

Our mission is ‘engage, education, empower, explore’. In order to get there, we need to add another ‘E’ around equality. All of that leads to better collaboration.

Mohammad Shoiab, Clinical Lead at Huddersfield and North Kirklees, Connect Health Pain Services:

I think it’s about providing patients with a greater variety of tools and treatment modalities, so they can break down those inequalities and provide equitable services. There’s equality, but it’s about equity of outcome as well and providing custom tools.

Geoff Brown, Chief Executive, Healthwatch Hertfordshire:

I think I would say looking at addressing the short-term improvements but thinking about long-term change in what people are trying to do in their work with communities. So, fixing the immediate needs, but looking at the longer term and how to get that fundamental change in those relationships.

Priya Vaithilingam, Head of Research and Engagement, Healthwatch Hertfordshire

I think we could have better and tailored interventions that are based on deeper understanding.

Professor Gurch Randhawa, Professor of Diversity in Public Health and Director of the Institute for Health Research at the University of Bedfordshire.

My reflection is that, nothing is unique to the UK, as it happens in many other countries as well. We have a challenge in that we have a government that still sees communities as having a deficit model, rather than as an asset. So, if we view communities as an asset, we would want to tackle inequalities through public engagement. That would mean we stop talking about these things and start acting on it.

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