Category: Health Inequality

Health Inequality, News

NHS failing in mental health support for kidney cancer patients

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A new report from Kidney Cancer UK reveals a failure in providing vital mental health support for those diagnosed with kidney cancer in the UK.

A new report combining ten years of data from the Kidney Cancer UK Annual Patient Survey has highlighted ongoing failures in providing vital mental health support to those diagnosed with kidney cancer – currently the 7th most common cancer in UK adults. The findings show that many patients are being let down in some of the most basic areas, impacting their ability to navigate their kidney cancer diagnosis and treatment journey with resilience and hope.

However, the charity believes support services can be improved at minimal cost through greater collaboration with charities that have experience in counselling and supporting kidney cancer patients.

The report, titled ‘Navigating the impact of kidney cancer: A decade insight into patient care and mental health’, is asking for simple changes such as:

  • Providing patients with the contact details of their CNS (clinical nurse specialist) for direct support.
  • Signposting to reliable information on treatments and surgery options
  • Advising patients on how to access counselling to help with the shock of a cancer diagnosis.

Many patients are being failed in some of the most basic areas. For example, 37 per cent of those surveyed were unhappy with the way they were told they had kidney cancer, 30 per cent were not given the name of a CNS and an average of 29 per cent felt abandoned after surgery. Given the minimal cost needed to improve services, the charity is calling for the NHS to implement policies to ensure charities are a higher priority in the healthcare professionals support pathway.

With over 3,200 patients taking part in the Kidney Cancer UK Patient Surveys across the past decade, this is one of the most extensive independent kidney cancer surveys ever undertaken and has led the charity to call for the NHS to implement policies ensuring that charities are more of a priority in the healthcare professionals support pathway.

Malcolm Packer, CEO of Kidney Cancer UK, commented: “We need a nuanced approach to patient care, one that prioritises mental health – as well as physical health. The role of timely, relevant information to individuals with kidney cancer cannot be underestimated, and as a charity we consistently see those who have their information needs met after the shock of diagnosis or following treatment generally experience far better mental health outcomes.

“This comprehensive report combining a decade’s worth of data from kidney cancer patients provides valuable insights into how healthcare professionals and patient organisations can collaborate to meet the complex needs of kidney cancer patients, ensuring they receive the support necessary to navigate their diagnosis and treatment journey with resilience and hope.”

Dr Kate Fife, Consultant Clinical Oncologist at Addenbrooke’s Hospital Cambridge, added: “It is very disappointing to see that 37 per cent of patients are unhappy with the way they were given their kidney cancer diagnosis. Sensitive and clear patient communication is very much a priority for healthcare professionals, but despite training in communication, delivering news of a cancer diagnosis has not improved over the last 10 years of surveys.

“Couple this with the news that there is no change in the amount of information and support shared following diagnosis, the message to healthcare professionals everywhere is that we need to be more sensitive in our actions and work closer with Charities to help better support all cancer patients. There is clearly much room for improvement.”
The 11th annual Kidney Cancer UK Patient Survey is now open, and the Charity is calling for all kidney cancer patients, past or present, to complete the survey. To take the latest annual survey click here.

 
You can read the full report here. For support and information relating to kidney cancer visit www.kcuk.org.uk.

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Health Inequality, News

Study highlights prison cancer inequalities

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Those diagnosed while in prison face several barriers to treatment and receive worse experiences of care, according to a study led by King’s College London.

Researchers from King’s College London (KCL), University of Surrey and University College London (UCL), funded by the National Institute for Health and Care Research (NIHR), have found that inequalities in cancer outcomes are persistent across English prisons, with those diagnosed while in prison 9 per cent more likely to die from the disease.

The study analysed cancer data from the National Disease Registration Service, which is part of NHS England, and conducted interviews with cancer patients in prison, and prison and healthcare professionals. It finds that cancer patients in prison are 28 per cent less likely to receive curative treatment than the general population, particularly surgery to remove tumours. Only half of the 9 per cent higher mortality rate can be explained by treatment differences.

Prisoners with cancer also have fewer hospital admissions than the general population, meaning that the cost of NHS hospital care is lower in the first six months due to fewer outpatient visits and planned inpatient stays. However, once emergency care and security escort costs are factored in, overall hospital care costs are higher.

Accordingly, the study emphasises the need to improve cancer care for people in prisons, to ensure that it is equivalent to that received by the general population.

Commenting on the study’s findings, Dr Elizabeth Davies, Clinical Reader in Cancer and Public Health in the School of Cancer & Pharmaceutical Sciences at KCL, said: “There are a number of structural factors that influence how healthcare is organised within the prison system, including the way in which prisons interact with NHS cancer services.

“Unfortunately, these factors can mean the route to diagnosis for people in prison is different to that of the general population, and they may not always receive the same level of treatment and support. People in prison with cancer have so far been a hidden and under-researched population. They should not be impacted by such health inequalities and should receive the same standard of care as they would in the community.”

To improve cancer care for people in prison, Dr Davies suggested, the NHS, HM Prisons and the Ministry of Justice should make better use of existing data to identify and reduce variations in care, as well as to better co-ordinate care pathways between these organisations.

Barriers to care

While finding that cancer patients in prison follow similar diagnostic pathways to the general population, the study shows that those in prison are disproportionately affected by barriers to care. These include lower levels of health literacy among those in prison, which impacts the ability to obtain and understand the information needed to make informed health or treatment decisions. Alongside this, the process for booking GP appointments in prisons is complex and time-consuming, and persistent communication issues between prison staff and NHS clinicians make co-ordinating care difficult.

Prison healthcare professionals interviewed commented that, prior to diagnosis, it can be difficult to distinguish between those with genuine healthcare concerns and those wishing to leave prison for other reasons.

Cancer patients in prison are also at risk of missing appointments if transport to hospital is not available. Persistent staff shortages in prisons also present another barrier. It was reported last year that many prisons are increasingly running more restrictive regimes, where a lack of staff can lead to prisoners being locked down for extended periods. The most restrictive of these, known as “red regimes”, were put into effect at least 22 times across English prisons in 2023. Prisoners have cited being locked up for 23.5 hours a day with no access to showers when under a “red regime”.

The study also highlights the use of handcuffs as a barrier to accessing care and a reason for prisoners to refuse hospital appointments. Further, prisoners are found to be reluctant to answer certain medical questions or raise concerns during appointments when healthcare professionals are present, and the study is the first to highlight discomfort among healthcare professionals and prison officers due to this practice.

After diagnosis, patients reported feeling unable to follow the advice of oncology professionals for managing and reporting side effects, which is especially challenging as they cannot directly communicate with their consultants from prison.
NHS oncology services often advice patients to bring friends or family members to appointments to offer psychological support and assist them with information gathering and retention, yet most of those diagnosed in prison attend appointments without this support, and their families often have little interaction with oncology teams.

“Prisons are designed to take away elements of control and choice for prisoners, however, this should not apply to their healthcare,” said Professor Jo Arnes, Professor of Cancer Care and Lead for Digital Health in the School of Health Sciences at the University of Surrey. “Our findings show that patients experience a number of barriers during diagnosis and similarly, once treatment started, they struggled to follow the advice of oncology professionals for reporting and managing any side effects.”

“Instead, they were reliant on prison officers and prison health professionals to respond appropriately, which undoubtedly impacts on their overall physical and emotional wellbeing. With a growing and ageing prison population there is an increasing need for patients with cancer within the prison system to access equivalent care to those in the community,” Professor Arnes added.

Professor Rachael Hunter, Professor of Health Economics at UCL, commented: “Although the cost of clinical cancer-related care for people in prison is less than in the general population, this does not reflect cost savings or efficiency, but worse access to care. More evidence is needed on cost-effective ways to improve access to curative cancer care for people in prison that is appropriate for the prison service.”

The study was coproduced by peer researchers with lived experience of the criminal justice system, supported by Revolving Doors – a charity dedicated to improving services for people in contact with the criminal justice system. It was presented in three collaborative papers published by The Lancet Oncology and eClinical Medicine.

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Health Inequality, News

Women spending 1.5 times more than men on personal health, report finds

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Survey commissioned by Deloitte reveals that women in the UK are spending £1.5bn more each year across all categories of out-of-pocket spending, and recommends more specific action to support women’s health in the workplace.

Women in the UK are spending over £1.5bn more than men on medical-related expenses each year, according to a survey of working adults commissioned by the Deloitte Health Equity Institute Europe. YouGov conducted the survey of 3156 men and women aged over 18 for Deloitte, to gain a clearer picture of “out-of-pocket” health spend – how much money they spend on personal health and care each year.

The Women’s Health Cost Gap in the UK survey finds that 52 per cent of employed women spend out-of-pocket on health each year, versus only 39 per cent of men, suggesting that women experience more pressure to spend their own money on personal healthcare. In total, the women surveyed spent 1.5 times more than men, averaging £305 a year, compared to £210 for men. The figure of £1.5bn was reached by multiplying this £95 surplus by the number of working women in the UK – 16.06 million.

Women also spend more on all categories of out-of-pocket spending, according to the survey. These include fertility, menopause and menstrual health, but also medical diagnostics and wearables, private counselling or other mental health support and general healthcare (e.g. dentistry or physiotherapy). At least some of this differential may be explained by the ‘pink tax’, whereby products aimed at women are priced more expensively than those aimed at men. Women may also be more likely to seek specialist (and therefore more expensive) treatment for female-specific concerns.

In general, the survey finds that women are more aware of the women’s healthcare benefits being offered by employers than men. 40 per cent of men responding to the survey did not know if any women’s health benefits were being offered, versus just 17 per cent of women.

However, many employees lack awareness of measures that could be implemented to support women’s health; 42 per cent of men said they didn’t know how workplaces could support women’s health, versus 17 per cent of women.

The survey finds that 60 per cent women are more attracted to companies which invest in women’s health benefits, rising to 67 per cent among younger women. Only 31 per cent of men felt this way. Despite these figures, only 28 per cent of women consider the provision of women’s health benefits a key factor when choosing a job (compared with 14 per cent of men), suggesting that it is not a deal-breaker.

The report makes several recommendations to address gender-based health disparities in the workplace. Among these, it recommends employers work actively to create women-friendly working environments which understand and account for the specific health needs of women, and to promote a culture where women can take leave for conditions without it negatively impacting their career prospects. This recommendation supports recent guidance issued by the Equality and Human Right Commission guidance, which says that employers could be sued for disability discrimination if they fail to make “reasonable adjustments” for employees going through menopause.

To policy makers, it recommends action to ensure that women can access treatment and care regardless of their age, sexuality, ethnicity, disability or postcode, as well as provision of adequate funding for women’s healthcare services and the financial incentivisation of research into women’s health.

Liz Hampson, partner and head of Deloitte’s European Health Equity Institute, commented: “Women spend significantly more treating ongoing poor health, or seeking out specialist treatment at their own cost, contributing to a higher overall out-of-pocket spend. This ‘health cost gap’ which exists can be attributed to a variety of reasons, including being misdiagnosed more and incidents of pain ‘taken less seriously’ in the healthcare system, underinvestment in women’s health services and underrepresentation of women in medical research.

“Addressing gender-based disparities in health requires a collaborative approach – something that requires investors, healthcare providers, policy makers, life sciences companies and employers to take action on.

“Supporting women’s health is not only important for society, but a sound investment in the future of the workforce and overall economy.”

The full report, including the questions, responses and recommendations, can be accessed here.

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Health Inequality, News

Women’s health, and why 51% are overlooked so often

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Women’s health has historically faced challenges and disparities, with issues often overlooked across all sectors.

Inequalities within women’s healthcare do not only impact conditions solely affecting women, but also our understanding of the different physiological responses that women have in areas such as cardiac disease and immune responses. It is also known that women use health technology differently to men, presenting clear opportunities to deliver measurable health benefits to more than half of the population, as well as a huge market opportunity for businesses to target.

Femtech and women’s health innovation are increasingly growing areas, however there is a risk that the promise of these areas is not realised without recognising the challenges that remain. Dr MaryAnn Ferreux, Medical Director at Health Innovation Kent Surrey Sussex (HIKSS), and Melissa Ream, Specialist Commercial Advisor, HIKSS, share their perspectives on the potential opportunities in femtech and women’s health, and how we can work together to reap the benefits.

What are the major challenges facing women’s health in the UK?

MaryAnn Ferreux: The main challenges in women’s health stem from decades, if not centuries, of gender bias and discrimination. In the past, many women’s health complaints were attributed to being emotional or hysterical and these gender stereotypes often led to doctors mistreating women’s symptoms as a mental health condition, rather than a physical condition.

While that has changed, much of this inherent gender bias remains, with many clinical trials and research studies not assessing the impact on women. We have recognised that there is a gender-based data gap but now we need to overcome this. Data sets are very rarely analysed by gender, and yet it is almost universally recorded, so the disparities in how genders respond in different disease groups could and should be analysed routinely.

Melissa Ream: We often think about women’s health in terms of women’s conditions, be that menstrual health, maternity or menopause. But women’s health care is general health care too. The cardiac symptoms and risks for women are different to men, yet these are not widely known. And this comes down to under representation of women in data sets as well as unconscious bias in the wider world. If you search for images of people having a heart attack on Google, most of the images will be of men. Cardiovascular disease in women is a bigger killer than breast cancer and we need to start taking this more seriously, looking at how clinical services are designed, delivered and promoted.

Do you think AI has the power to change this or do these concerns remain?

MaryAnn Ferreux: AI has a lot of potential to improve the health experiences of women, but there is a risk of building in more inequality if we do not address gender bias in data sets. More and more innovators are wanting to use AI in their technologies but some of them are not thinking about bias until it’s too late. A global analysis of AI systems found that 44 per cent demonstrated a gender bias. We need to ensure that the data sets used are comprehensively analysed and shown to be relevant to the target population and this comes down to the decision makers asking the right questions, whether that’s innovators, regulators, funders or purchasers. I’m also concerned about a lack of leadership in AI regulation and who is at the decision-making table. Without diversity at that top level, it is unlikely that the right questions will be asked early enough – retrofitting later on just won’t work!

Learning from experience presents a huge opportunity, but one that we haven’t been previously good at. As an example, a lack of ethnicity data incorporated into skin algorithms resulted in racial bias in pulse oximetry, ensuring that the device was not as effective for black and ethnic minority people. This disparity has been observed since the 90s and yet the device was still used during the Covid-19 pandemic, resulting in worse outcomes for black and ethnic minority people. We didn’t address the problem when we had the chance, and we need to ensure this doesn’t happen again.

So, what do we need to do to support equality in healthcare?

Melissa Ream: As MaryAnn says, having people at the decision-making table is vital to ensure that equality is incorporated into our systems. There is still a shortage of women in leadership roles even in the femtech industry and this needs to change, from more women at C-level, to more women investors. With women making up just 22 per cent of AI workers, we need active engagement from all sides to help make this change. Role models are a powerful tool; if you can’t look above for inspiration then you’re unlikely to move in that direction. It’s therefore so important that we build networks to support this.

Innovation hubs like Discovery Park play a powerful role in this, providing a network to support women in leadership positions and a platform that draws attention to the issues and also to those overcoming them. When we see good practice, let’s talk about it!

MaryAnn Ferreux: To make change happen, we need to use both a stick and a carrot. There must be something built into our structures and processes that sets out expectations and ensures compliance with health equity. But we also need to use financial levers as a carrot, with investors and purchasers demonstrating an interest in this area and making decisions that reflect a commitment to reducing health inequalities.

What would be on your women’s health manifesto to help guide this change?

MaryAnn Ferreux and Melissa Ream: There are three areas to focus on that we believe will see real results:

Leadership – Women currently make up just 20-25% of leadership in digital, tech and AI. This needs to change to reflect the wider population and their healthcare needs. We also need to promote and support women innovators to enter femtech and maximise commercial opportunities that improve women’s health.

Policy and Commissioning – Those determining the focus of our health and care policies need to be inclusive and incorporate diversity requirements, ensure that a wide range of women’s voices are heard, and that commissioning reduces gender health gaps.

Data sets – Data sets need to reflect their target audience and not exclude minority groups. Existing data sets may not be inclusive, so trials and data sets need to be designed and analysed with this in mind. This also presents an opportunity where having a comprehensive understanding of the data can result in the development of more tailored care including personalised interventions with the potential to reduce health inequalities.

How important do you think local networks are to support these changes?

Melissa Ream: Change doesn’t exist in a vacuum, it takes work across the entire system, and local hubs are an excellent starting point. By working together locally to understand the problems and bringing together groups to address these problems, we can see real impact. There are important roles for everyone within the industry, from the NHS to individual companies, hubs like Discovery Park and national networks like Barclays Eagle Labs and Health Innovation Networks. If we collaborate, we can make health care more equitable, close the gap and reduce inequalities.

MaryAnn Ferreux: Discovery Park is in an exciting position, embedded in the start-up community but with close links to the NHS and academia, there is opportunity to set a standard and drive this campaign forward. Discovery Park Ventures is already investing in women led femtech companies, and I enjoyed joining the team at Giant Health to discuss the challenges and opportunities in this space.

Discovery Park recently hosted a panel at Giant Health on ‘Unlocking Opportunities in Women’s Healthcare’. The panel was moderated by Sylvia Stevenson, Founder, Absolute Diversity, and featured Dr MaryAnn Ferreux, Medical Director, Health Innovation Kent Surrey Sussex, Lina Chan, Holland & Barrett General Manager Wellness Ventures and CEO, Founder at Parla, Melisa Guven, Associate, Monograph Capital and Karina Vazirova, Co-Founder & CEO, Femtech Lab.

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Health Inequality, News

Report highlights potential of pharmacy sector in tackling health inequalities

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The report from Optum identifies the barriers holding the pharmacy sector back from an enhanced role in addressing health inequalities and issues recommendations to allow the sector to take a more prominent role in tackling persistent disparities.

A report from health service innovation company, Optum, has called for an enhanced role for the pharmacy sector to help drive progress on health inequalities. The report, Action on health inequalities: Perspectives from the pharmacy profession, finds that there is an appetite within the sector to contribute more to the health inequality agenda, but that it is stymied by systemic issues and day-to-day challenges which make it difficult to go beyond day-to-day functions.

The report describes the key insights garnered from a roundtable discussion that took place in October 2023. Around 30 senior pharmacy professionals attended the roundtable from across primary and secondary care, integrated care board (ICB) leadership and community pharmacy to answer the question “how can pharmacy and medicines teams take a leading role to close the gap on health inequalities in their communities?”.

Participants were asked to give their views on a range of subjects, including how to define pharmacy’s role in tackling health inequalities; the opportunities for pharmacy professionals to achieve better outcomes for marginalised groups; the barriers from preventing pharmacy from making a broader contribution within their integrated care systems; and possible measures that would enhance the sector’s influence on the health inequalities agenda.

The report makes five recommendations to the pharmacy sector around how it can be empowered, and its role enhanced to help deliver health inequality improvements. These are:

  1. Create a stronger, system-wide understanding of the value pharmacy can bring.
  2. Achieve greater coherence and impact by building a single professional voice.
  3. Give pharmacists the means to make better use of data in a safe, smart and sensible way.
  4. Enhance the training and continuous professional development opportunities available for pharmacists.
  5. Put patients and citizens at the heart of everything we do.

Reframing the value of pharmacy

Pharmacy and medicines management have assumed increasingly prominent roles in recent years, and the two have been placed at the heart of the drive to improve preventative services and tackle health inequalities in the NHS in both the Major Conditions Strategy and NHS England’s Core20PLUS5 programme.

However, the report finds that pharmacy’s potential impact on health inequalities is hampered by the fact that medicines management is too often perceived as a “cost-saving opportunity” by NHS England and ICB financial teams. It calls for a reframing of the debate around pharmacy’s offering, arguing it should centre on the role of pharmacy in creating value for systems, rather than a short-term approach focusing on cost-reduction.

While short-term savings can be found in many areas, the report finds that these savings could be eclipsed were substantive action on health inequalities taken today. It cites figures that the cost of socio-economic inequalities to the NHS acute sector is £4.8bn every year, while people in the most deprived fifth of neighbourhoods account for 72 per cent more emergency admissions than the most affluent fifth. Addressing these trends, the report contends, would contribute more to the health inequalities agenda than any efficiency savings could over the long-term.

The report notes that ICSs, through the work of integrated care partnerships (ICPs), have a clear mandate to reduce the health inequalities gap and that pharmacy has a key role to play in achieving this. However, it identifies a lack of influence of the pharmacy profession at senior levels within ICSs, typified by the fact that not all ICSs have appointed a Chief Pharmacist and not all have full board representation. The report calls on the pharmacy sector itself to organise and come to resemble a single, coherent professional group to strengthen its voice and the impact of its advocacy. It also suggests that the development of “pharmacy collaboratives”, mirroring structures that exist in the provider and primary care sectors, would help the sector to improve its collective presence and impact.

Among other barriers discussed was the sector’s ability to access high-quality patient data from which it can generate meaningful population intelligence about specific cohorts or groups. Data linkage – drawing together data from multiple sources – was identified as being of particular concern, but this remains a troublesome issue across many ICSs. It was noted, however, that data alone cannot tell the whole story about a patient or population group, and that data insights must be paired with community intelligence and co-production to develop truly impactful interventions that will shift the dial on health inequalities.

In his foreword to the report, Chief Medical Officer at Optum UK, Dr Martin McShane, said: “My experience has shown me that the pharmacy profession is one of the NHS’s hidden jewels: agile, inventive, wholly focused on the needs of their patients, pharmacists do so much across primary and secondary care to keep people safe and supported. The recognition they are now getting — as key agents in the national drive to address health inequalities and drive up-stream improvements in preventative care — is both long overdue and a testament to their unique skill set.

“Yet if we want our pharmacist colleagues to make the fullest possible contribution to this agenda, we need to do something the NHS hasn’t always been very good at over the course of my career. And that is, to listen to them, act on their concerns and make them a genuine partner in change.”

The full report can be accessed here.

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Digital Implementation, Health Inequality, News, Population Health, Thought Leadership

Inclusive innovation: using community co-innovation to tackle health inequalities and digital exclusion

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By Fran Ward, Project Manager, NHS Arden & GEM CSU and Dr Paulina Ramirez, Academic, Birmingham Business School.

Digitalisation of the NHS has the potential to enable more personalised care and improve health outcomes. But it can also widen health inequalities. Some people in communities facing social and economic deprivation, which are also those experiencing the poorest health, find accessing care increasingly difficult as the NHS becomes more digital.

If those most in need of health services become less able to access them, health outcomes for these communities will worsen and the overall cost of healthcare will increase. Integrated care systems (ICSs), therefore, need to maximise the value of their investment in digitalisation by making it work for all their communities, not just the ones they know and understand well.

The ‘Building Inclusive Digital Health Innovation Ecosystems’ research programme, led by University of Birmingham’s Business School and supported by NHS Arden & GEM’s digital transformation team and Walsall Housing Group (whg), explores how community co-innovation could be used to develop digital healthcare that works for diverse communities and reduces the risk of exclusion.

Co-innovation is about understanding and framing problems and taking a bottom-up approach to generating new ideas in response. Specifically, this programme of community co-innovation is socially inclusive by design, creating an opportunity for disadvantaged communities to share their knowledge and lived experience. It gives these communities an equal share of voice alongside commissioners, clinicians and other stakeholders in the development of new digital health technologies or design of new online services.

Peer research

To genuinely hear what more deprived communities need, it is important to rethink how we in the NHS structure engagement to make it easier and more comfortable for those we most want to hear from. Training peer researchers from whg and local voluntary organisations enabled us to build on existing skills, connections and relationships. As trusted members of the community, peer researchers were better able to have relevant conversations within people’s homes, and elicit more honest and open responses on how people access technology and the barriers they face.

The resulting insights challenged some assumptions around barriers to adoption of digital technologies. The main source of inequality was found to be the lack of skills and confidence to engage with online services, with an individual’s type of work or family support structure often having a greater influence on digital proficiency than age, for example. Concerns around data privacy and information sharing were high, causing some not to access potentially valuable support. Despite positive attitudes towards digital in general, many felt digital services such as online GP appointments were not an adequate replacement for face-to-face health services due to a combination of trust, complexity and importance of healthcare in people’s lives.

Simply developing more digital services without addressing these fundamental barriers is inevitably going to limit success.

Changing the nature of engagement

Although good examples of user engagement in digital health services exist, there are constraints too. In particular, technology companies often have little or no engagement with deprived communities so can’t be sure their technology will work for those most likely to have the highest health needs. Alongside peer research, we need to create spaces for co-innovation to happen, bringing together these stakeholders to share information and work together to come up with new ideas.

A locally hosted co-innovation event enabled system partners in the Black Country ICS and health technology companies to hear from and engage with peer researchers and other local community organisations to start putting theory into action. Based on health priorities identified through the peer research, table group discussions addressed challenges such as how to ensure that a mental health app was used by those who most needed it, and how to increase numbers of patients from areas of high deprivation attending diabetes reviews. Peer researchers were able to articulate the day-to-day challenges people in their communities face and why, for example, simplicity and ease of use is often preferable to feature-packed, complex apps.

The event has already resulted in a dedicated task and finish group being set up at NHS Black Country Integrated Care Board to explore how community co-innovation can be applied to issues such as digital GP access. Whg is also keen to continue building a space for co-innovation within its community. More broadly, however, there is a wealth of learning from this approach which can be applied to digital transformation across the country.

Developing best practice

It is clear from this work that input from communities facing social and economic deprivation is essential in finding solutions to some of the nation’s most complex health challenges – and that how we do that is as important as why.

Findings from the ‘Building Inclusive Digital Health Innovation Ecosystems’ research have been used to develop a What good looks like for our communities report to support the NHS Digitalisation Framework. This highlights the need for affordable, simple, safe and inclusive technology that is well integrated with in-person services, guarantees data privacy and is supported with local skills training and support.

We have also developed a playbook to guide ICSs in using community co-innovation to develop digital health services, drawing on the learning from this programme to encourage greater use of this approach across the NHS. After all, there is no point in developing digital services that aren’t going to work for the communities we most need to help.

Photo caption: Peer researchers interviewing community members in their own homes in Walsall.

To find out more about digital inclusion and health inequalities, see: The digital divide: Reducing inequalities for better, prepared by Public Policy Projects.

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Health Inequality, News, Population Health

Gypsy, Roma and Traveller communities subject to stark access and mental health outcome inequalities, report finds

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Suicide rate among Gypsy, Roma and Traveller community is up to seven times higher than for all other communities in England, with poor service provision identified as major factor.

A report published last week says that Gypsy, Roma and Traveller communities experience among the starkest inequalities in access to healthcare of any community in England. The report was commissioned by the NHS Race and Health Observatory and was led by The University of Worcester.

It addresses a marked lack of mental health care provision and captures first-hand insights from service users and providers, as well as examples of good practice from six effective services. Most of these services are run by voluntary organisations from within the Gypsy, Roma, and Traveller community themselves.

Inequalities in Mental Health Care for Gypsy, Roma, and Traveller Communities estimates that the suicide rate among this group is up to seven times higher for this community than for others, and that life expectancy among the Gypsy, Roma and Traveller community is up to 10 years lower than the national average.

It further identifies a lack of access to digital services, low literacy levels, shortage of local and national data collection, and limited financial investment as presenting significant barriers to accessing to local health services and preventing the development of customised services.

Considerable stigma is still attached to mental health concerns within many communities, and a lack of granular data to support tailored services is contributing to the problem of poor access for Gypsy, Roma and Traveller communities.

Data was difficult to fully assess regarding the uptake and impact of services, due in part to the organisations studied not having the resources to collect and analyse such data and also to non-reporting of ethnicity (for fear of discrimination).

In response, Joan Saddler, who is Director of Partnerships and Equality at the NHS Confederation, said: “Leaders will be increasingly concerned about the troubling findings this report has illustrated which show a huge disparity in access, experiences and outcomes for gyspy, roma and traveller communities. These are people’s lives – impacted and in some cases shortened by preventable inequalities.

“We have known for some time that Gypsy, Roma and Traveller communities experience poorer care access, experience, and outcomes as a result of discrimination. The Race and Health Observatory report helpfully builds on this, but we must now focus on action. We would welcome the opportunity to be part of a coalition working with NHS England to reduce such inequalities particularly with Gypsy, Roma and Traveller communities at the heart of creating solutions, so we can take the first step to finally eradicating discrimination.”

National strategy lacking

Professionals’ lack of expertise and knowledge about Gypsy, Roma, and Traveller cultures was further identified as a significant deterrent to take-up of mainstream services. In 2022, Friends, Families and Travellers noted that out of 89 suicide prevention plans in England, only five mentioned Gypsy, Roma, and Traveller communities and only two listed any action plan strategy.

The government’s latest England Suicide Strategy (2023-2028) mentions the Gypsy, Roma and Traveller community twice, but does not afford these communities priority status nor mention them in its associated Action Plan.

Despite the lack of national investment in national mental health care provision, there are many examples of locally organised services doing targeted work with these communities. Researchers visited effective services run in Hertfordshire, Leeds, Lincolnshire, York, Cambridgeshire, and Ireland (the latter due to its provision for young people). Each site represents an example of novel, progressive initiatives which have broken down barriers for Gypsy, Roma, and Traveller communities in need of mental health support.

These, and more findings, were presented at an online report launch of Inequalities in Mental Health Care for Gypsy, Roma, and Traveller Communities, Identifying Best Practice, on Thursday September 28.

The launch included a presentation of the research around the significant mental health needs of these communities; first-hand experience and insight from those involved in the case study sites; a Q&A and practical recommendations for health and mental health providers to action around the country.

Panellists included representatives of the Observatory’s Mental Health working group, the Gypsy, Roma and Traveller Social Work Association and the University of Worcester. Insight gathered over 12 months of research was undertaken in collaboration with research co-authors, Gypsy and Traveller Empowerment Hertfordshire UK (GATE Herts), and the Gypsy, Roma, Traveller Social Work Association (GRTSWA) and involved 70 community and 21 staff members.

“Deeply concerning”

Speaking ahead of the launch, Dr Habib Naqvi, Chief Executive of the NHS Race and Health Observatory said: “We know that Gypsy, Roma, and Traveller communities face stark challenges in accessing psychological therapies and other mental health services. This report lays bare the mental health issues and stigma faced by these communities first hand. We are pleased to have co-produced with these communities, a clear set of practical, tangible actions and recommendations for more equitable mental healthcare provision.”

Dr Peter Unwin, Principal Lecturer in Social Work, University of Worcester, said: “It has been a pleasure to carry out this research in co- production with community members and to have met so many inspiring people who have developed mental health services against the odds. We should all now work together to ensure that this report on the health inequalities in Gypsy, Roma and Traveller communities leads to real change and equality of opportunity.”

Responding to the Race and Health Observatory report, Saffron Cordery, Deputy Chief Executive at NHS Providers, said: “Gypsy, Roma and Traveller (GRT) people’s experiences of health services are dented severely by discrimination. It is deeply concerning to see how GRT communities struggle to access mental health services they need.

“There should be no ‘winners and losers’ when it comes to physical and mental health provision. NHS trusts work hard to reduce health inequalities but years of funding cuts to councils’ public health and preventative services mean that already stretched NHS services face more strain.

“Government must tackle the root causes of why some minorities are more likely to have worse physical and mental health outcomes and address barriers and discrimination facing too many groups of people including GRT communities.”

 

 

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Health Inequality, News, Thought Leadership

Tackling rehabilitation provision must be a priority for ICBs

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By Natasha Owusu, Policy Lead (England) and Rachel Newton, Head of Policy at the Chartered Society of Physiotherapy (CSP).

Rehabilitation, long-term conditions and health inequity

It is not fair that a person’s ethnicity, socioeconomic situation, sex, age, religion, sexuality and disability can determine the level of access they have to rehabilitation services which can lead to worse health outcomes.

People in deprived communities and groups marginalised by discrimination live shorter lives and spend a greater proportion of their lives affected by long-term conditions and disabilities. The evidence of treatment outcomes for people with frailty, musculoskeletal, cardiovascular, respiratory, and neurological conditions, cancer, spinal injury, brain injury, and many more conditions, shows irrefutably that rehabilitation is as essential as medicines and surgery.

But rehab services are either unavailable, have long waiting times, or are poorly equipped to meet the needs of their communities, having been desperately under-resourced and under-staffed for decades. The impact of this is felt by those communities most in need, entrenching health inequity. Whether or not an individual accesses rehab affects not only their health but also their life chances, earning potential, likelihood of being in work, how active they are in their community, how likely they are to become socially isolated, and how happy they are.

Without rehab, people can be stuck in a downward spiral of worsening health, loss of mobility and poor mental health and multiple medication regimes. Ensuring everyone who needs rehab can access it can reverse this downward spiral, so that people cannot only survive but live healthy and active lives.

For decades rehabilitation services have been fragmented and developed in a piecemeal way. This has created a confusing system, which is hard for service users to navigate, or to know what to ask for or expect. GPs and hospital doctors are often unfamiliar with what rehabilitation is, what it can achieve, and the evidence supporting this. This means referral rates are low and when they do refer there is often poor communication with patients about what rehabilitation is and why it is an essential part of their treatment.

Rehabilitation is siloed, located in hospital department out-patients when it doesn’t need to be and there is inconsistency in what a ‘good’ level of provision and quality looks like. People who are marginalised, and those experiencing higher levels of deprivation, are more likely to be diagnosed with one or multiple long-term conditions, and this will be earlier on in their lives, with more severe conditions.

The same parts of the population with the greatest need for rehab also face the biggest barriers to access it. The sad fact set out in the CSPs 2022 report, Easing the pain: Rehabilitation, recovery, reducing health inequity, is that patients from deprived communities and marginalised groups are failed at every stage of the rehabilitation pathway.

This much we know. But there is so much we don’t know because data collection on rehabilitation needs, and provision is poor. Legally, all NHS and social care services must collect data about patients’ protected characteristics but there is a huge variation in how consistently and accurately this is done. This inconsistency is part of a wider issue of a dearth of data in community rehabilitation services.

The CSP’s Making Community Rehabilitation Data Count report, highlights the need for centralised data collection to best meet the needs of populations and to track the development of integrated rehab services.

The drive for improvement and innovation that has produced medical breakthroughs now needs to be applied to recovery and rehabilitation.

The role of integrated care systems

Rehabilitation sits at the intersections of health and social care sectors, taking place in social care, community, intermediate and acute NHS settings, and provided by multiple sectors.

The modernisation of rehabilitation can only be done by working across the whole system, rather than sector-by-sector or condition-by-condition. Through this approach, rehabilitation should be seen as a litmus test for integrated care systems.

There are many pockets of excellent rehab services for people with any long-term condition, that have designed their service to be accessible to all their communities, and take a holistic, integrated approach.

Scaling up this approach requires strategic leadership, adoption of consistent standards, the workforce to deliver and data.

The CSP has joined forces with more than 50 other professional bodies and national charities in the Community Rehabilitation Alliance (CRA) to recommend the following for ICBs:

  • Appoint Single Accountable Leads for Rehabilitation operating at a strategic level to deliver expansion, integration and redesign of services and be accountable for key performance metrics.
  • Adopt the Community Rehabilitation Best Practice Standards co-developed by the Chartered Society of Physiotherapy with our partners.
  • Expand and develop the rehabilitation workforce. This includes making use of the growth in registered physio numbers, but also the non-registered workforce, exercise professionals and other AHPs, nurses and doctors involved in rehabilitation.
  • Develop ICB data plans to show who is and isn’t accessing rehabilitation services, the consequences of this, the level of provision against population need, and performance on improvements.

CSP Member and Chair of the Birmingham and Solihull ICS AHP Council, Seema Gudivada, will be talking more about this approach at the panel discussion, Effectively addressing health inequalities in West Midlands (at the Birmingham ICS Delivery Forum on 18 April). Seema hopes delegates will be inspired after the event to action these recommendations to make equitable access a reality and improve outcomes for all patients across the West Midlands.

For further information or advice, please visit the CSP stand at the Birmingham ICS Delivery Forum on 18 April 2023 or email cre@csp.org.uk.

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Community Care, Health Inequality, Population Health, Thought Leadership

Prioritising local ‘business progression’ within ICS population health strategy

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population health in business

PPP’s Population Health in Business series examines the impact of businesses on health outcomes. The first roundtable examined the impact of the employee-employer relationship on health equity within a given region.

Integrated care systems should prioritise the development of local ‘business progression frameworks’ within population health strategy. This is according to a new recommendation from Public Policy Projects (PPP). 

Business progression frameworks, developed by ICS leaders and local authorities, can provide local businesses with clear guidance regarding how their employee health and wellbeing strategies can impact local health, thereby driving accountability. 

Employment can greatly impact an individual’s health, though this impact varies depending on the nature of the work and workplace environment. Variations in these health implications are significant contributors to health inequalities in the UK and can have a major effect on the impact of ICS population health strategy.  

Health inequalities have been found to exist within individual businesses, with poorer health outcomes typically experienced by those at lower occupational grades

The insights were uncovered during a roundtable of PPP’s Population Health in Business series, which convenes key experts, including ICS leaders, to examine the impact that businesses, and employment more broadly, have on health outcomes. The series makes practical recommendations for ICS and business leaders to collaborate to inform population health strategies and improve health outcomes at a community level.   

The series is chaired by Professor Donna Hall CBE, Integration and Transformation Advisor to NHS England. Commenting on the insights gathered so far, Professor Hall said: These sessions explore the practical ways in which businesses can support health and wellness in their local communities. We have had engagement from a wide range of businesses, public health experts and academics which has been a rich and diverse discussion. The report provides helpful support and advice to local health and care system leaders, businesses and communities on making the most of private employers as a key part of the local infrastructure to support breed health and wellness for all.”

Read the full insight piece from roundtable one here.

PPP has found that good employee health and wellbeing strategies and a positive workplace culture are associated with increased productivity and better staff retention – meaning that the quality of a business’s approach to employee health directly impacts their strength as an organisation. A positive workplace culture is one that fosters clear and open communication and strong co-working bonds. PPP also believes that businesses can influence the health and wellbeing of their employees through better pay, flexibility in location and working hours, and increased control over tasks and responsibilities.  

Health inequalities have been found to exist within individual businesses, with poorer health outcomes typically experienced by those at lower occupational grades. Businesses that incorporate health into every level of their corporate decision-making, and seek to prioritise those in greatest need, are more easily able to impact health equity than businesses that do not.   

How a progression framework is improving health outcomes in Leeds 

Leeds City Council’s ‘Business Anchor Progression Framework’ provides an example of what such a framework could look like. Broken down into four sections (employment; procurement; environment and assets; and corporate and community) the framework is “designed for businesses with a large or influential local presence who want to play a full anchor role locally and is a wide-ranging tool that considers the breadth of a company’s activities.”  

Anchor institutions can be defined as large organisations whose sustainability is connected to the populations they serve and who seek to utilise their assets and resources to support improvements in health equity and the overall quality of life within their local area. The framework used in Leeds poses questions to businesses such as “to what extent do you encourage the mental and physical health and wellbeing of staff through facilities, policy, culture and support?”  

The framework is primarily aimed at private sector businesses that have generally yet to be incorporated into UK anchor networks. The framework also asks businesses to grade their present status and their organisation’s ambitions on a scale of one to four and is intended to provide businesses with clarity on their responsibilities as community anchors and support them in identifying key areas of improvement.   

Read more analysis from PPP’s Population Health in Business series. 

Recommendations from roundtable 1 

  • ICSs should craft ‘business progression’ strategies to chart the progress of private businesses within their local system. These frameworks should share some universal objectives and metrics but must also be tailored to the specific needs of the system in question.   
  • Businesses should identify the key health conditions and inequities within their business and should share findings with their local ICS.  
  • Businesses should be further encouraged to submit case studies documenting their approaches to employee health and wellbeing, and their perceived success, to the DWP and their local ICBs.  
  • The DWP should support ICSs in developing ‘business progression’ frameworks by developing a more robust Voluntary Reporting Framework.    
  • Health equity considerations should be incorporated into corporate decision making at every level.   
  • An employee health and wellbeing strategy should include objectives for improving communication between employees, particularly between different seniority levels. Strategies should also view socialisation and the development of workplace ‘rituals’ as key to developing a healthy culture.   
  • Employee health and wellbeing strategies should target those at higher risk of health inequalities, particularly those at lower occupational grades. Strategies should prioritise interventions that help employees easily access support linked to improved social determinants of health and should be extended to contracted employees where possible.  
  • ICSs should encourage employers to re-evaluate their Employee Assistance Programmes (EAPs) to ensure support programmes are easy to use and deliver a clear benefit to employees.    
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Acute Care, Health Inequality, News, Primary Care, Thought Leadership

The NHS must break the cycle on heart failure

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NHS heart failure

Integrated Care Journal recently spoke to Dr Ashton Harper, Head of Medical Affairs (UK & Ireland) at Roche Diagnostics, to examine the heart failure diagnostic pathway and identify where the biggest opportunities in NHS diagnostics exist.

In the midst of its most challenging period of pressure, diagnostics have a significant role to play in helping to alleviate patient backlogs and free up vital resources across the sector – and nowhere is this more critical than with heart failure.

The health challenge that heart failure, a serious and chronic disease that prevents the heart from pumping blood through the body, poses to the NHS is both immense and relentless.  An estimated one million people live with heart failure in the UK, with approximately 200,000 developing the condition every year, creating a profound and multifaceted set of health challenges for the NHS.

Writing in a recently published report by PPP for Roche Diagnostics UK & Ireland, Professor Sir Mike Richards described diagnostics as a “Cinderella” service within the NHS. Yet the UK’s capacity to diagnose heart failure has been consistently hampered by broader capacity challenges in NHS diagnostic service provision, as well as the lack of uptake of, and access to, innovation. A combination of workforce shortages and outdated facilities have historically contributed to late diagnosis and poorer health outcomes. This realisation directly informed Professor Richard’s 2019 report, which led to the introduction of community diagnostic centres (CDCs).

A ‘silent epidemic’

Heart failure is notoriously difficult to diagnose, in part because its key symptoms – breathlessness, exhaustion and ankle swelling – can be caused by a number of other conditions. As a result, late diagnosis of heart failure is unfortunately common, often only occurring once a patient has presented in secondary care following the onset of severe symptoms.

“If heart failure patients are picked up early in the community in primary care, the evidence shows that management of the disease is much better”

“Current estimates are that 80 per cent of patients are diagnosed [with heart failure] after a hospital admission,” explains Dr Harper, “and a significant proportion of those will be emergency cases, and so these patients are at the late stage, requiring more intense and complex treatment.” This matters because heart failure patients who require hospitalisation account for “somewhere in the region of a million inpatient days every year, which is about 2 per cent of total NHS annual bed days”. It is also estimated that between 2-4 per cent of the total annual NHS budget is spent managing patients with heart failure (up to £6 billion in 2022/23) and according to Dr Harper, “the majority of this burden is due to hospitalisation – and hospital admissions for heart failure have increased by 50 per cent in the last decade alone”.

“Somewhere in the region of 70 per cent of the total annual cost [of managing heart failure] is actually utilised by the management of stage four patients alone,” says Dr Harper, “but if heart failure patients are picked up early in the community in primary care, the evidence shows that management of the disease is much better; they have a better quality of life; and significantly reduced requirements of both primary and secondary care services ongoing.”

Diagnostic reform

“The NHS must look to adopt innovative diagnostic tools at a faster rate”

As was made clear in Professor Richards’ report, the NHS must conduct a wholesale rethink of diagnostic service provision. “Early diagnosis is key to effective management and better outcomes for these patients”, explains Dr Harper, “but while the use of medicines which are deemed to be beneficial and cost effective is mandated in the UK, diagnostics aren’t. It can often take 10 or more years for a diagnostic test to be widely adopted across the NHS.” As such, the NHS must look to adopt innovative diagnostic tools at a faster rate.

NT-proBNP tests are fast, cost-effective, non-invasive and recommended by NICE for the diagnosis of heart failure. Recently updated NICE Quality Standards, recommend that this test be conducted on all patients presenting to primary care with a possible heart failure diagnosis, but this guidance is not universally followed with recent data showing that only 18.3 per cent of heart failure patients had an NT-proBNP test recorded.

“Following the NICE guidance for NT-proBNP testing  can reduce unnecessary referrals and allow GPs to better identify patients that do need more urgent referrals for echocardiograms”, Dr Harper notes, which is important because “we’ve got massive echocardiogram backlogs, with patients waiting months”, many of whom may not need one at all. The ability to preclude a heart failure diagnosis early would reduce the echocardiogram bottleneck, meaning those who really need one can access one sooner. “I think mandated funding for NT-proBNP would go a long way,” says Dr Harper. “This approach could help to potentially flip the site of primary diagnosis from 80 per cent in hospital to 80 per cent in the community, and therefore reduce pressure on the NHS.”

Reprioritising and reframing the issue of heart failure

Dr Harper believes that “there’s a strong case for heart failure to be prioritised by NHS England in the upcoming NHS Long Term plan refresh with clearly defined targets, such as exist for stroke and cardiac arrest.” Accordingly, “there needs to be increased collaboration between the NHS, industry and patient organisations to tackle inequalities in the diagnosis and management of patients.”

Much of this comes down to a need to educate and raise awareness of heart failure and its symptoms. “It has been described as a ‘silent epidemic’ because it hasn’t received as much attention as other pressing healthcare issues,” Dr Harper remarks. This lack of awareness has produced some alarming disparities, particularly around gender and misdiagnosis.

“Clinicians seeing female patients with the symptom of breathlessness should have heart failure at the top of their differential diagnostic list”

“There is an historical  presumption that heart failure is a more male-dominated disease rather than female,” he explains, “when actually it’s about a 50/50 split.” Despite this, women are more likely to be misdiagnosed than men or to wait for much longer than men for their diagnosis. Dr Harper continued, “clinicians seeing female patients with the symptom of breathlessness should have heart failure at the top of their differential diagnostic list.”

Echoing recommendation three of Breaking the cycle, Dr Harper also encourages widespread adoption of the Pumping Marvellous Foundation’s BEAT symptom tracker. If shared with the wider public, this checklist – Breathlessness, Exhaustion, Ankle Swelling, Time for a simple blood test – could increase heart failure symptom awareness and ensure that more cases are identified sooner and treated more effectively.

Conclusion

“Ensuring primary and secondary care professionals share a common goal is key”

A coherent and system-wide approach will be needed if capacity is to be increased across all diagnostic modalities, but especially in heart failure. “Ensuring primary and secondary care professionals share a common goal is key,” Dr Harper says, “[and] the introduction of integrated care systems is a great opportunity to foster this collaboration.”

“By increasing diagnostic capacity in the community, we might be able to reduce the pressure on hospital admissions and NHS bed days,” and the use of NT-proBNP tests to confirm or rule out suspected cases of heart failure will be crucial. Taking the present opportunity to radically overhaul the heart failure diagnosis pathway will help to decrease the societal burden of the disease, create extra capacity for the NHS and, most importantly, help heart failure patients lead longer, healthier lives.

Breaking the cycle: Tackling late heart failure diagnosis in the UK, finds that late diagnosis of heart failure is a significant hindrance to the effective management of heart failure. It makes a series of recommendations to NHS England, Health Education England, and integrated care systems, as well as patient groups and industry to come together to improve heart failure diagnosis across the entire healthcare system.

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