Radar Healthcare report ranks UK second on overall healthcare equalities

By Integrated Care Journal

Report from Radar Healthcare shows Canada leading the way on overall healthcare equality, with the UK and other northern European Countries making up the rest of the top six.

A new Healthcare Inequalities Report, released by Radar Healthcare, has ranked 35 of the most developed countries around the world, offering a comprehensive insight into which of these countries offers the best healthcare rights to its citizens through their laws and regulations.

The report places Canada, the UK and Norway in the top three for global healthcare equality, with each generally offering fair and equitable access to healthcare for its citizens.

Radar Healthcare’s report also makes reference to a recent Public Policy Projects report, A Women’s Health Agenda: Redressing the Balance, which produced a series of recommendations aimed at improving the design, delivery and outcomes of women’s healthcare.

While the UK places well overall, the report ranks it number 1 for factors relating specifically to women, with Canada coming in second place.

Below is a snapshot of the report’s findings on maternity and paternity leave.

Maternity and paternity leave

The UK lags behind Denmark and Norway on the ‘paid maternity leave’ metric, offering 39 weeks of paid leave and 13 weeks of unpaid leave, compared with 52 weeks of paid leave in Denmark, while Norway offers 49 weeks of paid leave and 59 weeks of unpaid leave.

The report draws key distinction between paid and unpaid maternity leave; a high number of overall weeks of maternity leave may appear impressive but the degree to which this includes paid leave is highly consequential. For example, Italy offers 4 months of paid maternity leave and 17 weeks of unpaid leave, however, leaving a new mother without a salary for 17 weeks places them in a potentially vulnerable situation, perhaps leaving them more reliant on a partner or family for support.

On paternity leave, the UK scores poorly, scoring offering just 14 days of paid leave to new fathers, while Sweden offers 240 days, the Netherlands 182 days and Denmark 168 days. Germany, meanwhile, has no laws mandating employers to offer new fathers paternity leave, either paid or unpaid.

The lower provision of paid paternity leave is a key metric of gender-based healthcare inequality, since less leave for fathers places more of the burden for childcare on mothers, as well as limiting the valuable bonding time between a newborn and their father.

Further to maternity and paternity leave, the report assesses each country’s standing in regard to the following categories:

The legal age of consent – the age at which a person is considered to be legally competent to consent to sexual acts
Doctor / patient confidentiality ages – the age a resident can speak confidentially to a healthcare professional without parents/guardians being informed
Cervical cancer screening – what age they are recommended for women around the world
Mammogram screening tests – what age they are recommended for women
Flu vaccines – at what age is this offered to elderly residents around the globe
IVF treatment age range – how age impacts the chances of becoming a parent via in-vitro fertilisation in different countries around the world
Cosmetic surgery – at what ages someone can have a cosmetic surgery procedure
Transgender hormone treatment – at what age do healthcare practitioners in different countries allow transgender patients to start hormone treatment
Access to birth control around the world – (age requirements/costs/the countries offering free birth control)
Abortion laws – how they differ across the world

Commenting on the report, Hayley Levene, Head of Marketing at Radar Healthcare, said: “Radar Healthcare partners with organisations such as Public Policy Projects who are learning from experience (both their own and others) to make contributions to the policy debate which address real-world choices on the basis of real-world evidence.

“As a healthcare supplier, Radar Healthcare is passionate about helping to make a difference and delivering improved outcomes. Working with PPP to produce reports such as ‘The Social Care Workforce: averting a crisis’, ‘The Digital Divide: reducing inequalities for better health’ and ‘Integrating Health and Social Care: a national care service’ is vital in helping to drive change and improve some of these health inequalities.

“For example, technology could offer oversight that 80 per cent of patients or healthcare workers themselves are having suicidal thoughts – and this could prompt a process to be followed to tackle it, which will encourage decisions of change.”

To find out more, please visit www.radarhealthcare.com.

NHS community pharmacies sound alarm as inflation bites

By Gabriel Blaazer

The National Pharmacy Association (NPA) has raised concerns about the future of the community pharmacy sector, with a new report highlighting the impacts of inflationary pressures

The NPA commissioned the investigation into the implications of inflation on community pharmacy commissioned in June 2022 following large spikes in inflationary pressures this year. Professors David Taylor of University College London and Panos Kanavos from the London School of Economics and Political Science were asked to investigate the capability of community pharmacy across the UK to purchase and dispense NHS and other medicines and to become more focused on the provision of clinical services.

The report, Protecting the UK Public Interests in NHS Community Pharmacy, was published in September 2022 and warns of several thousand community pharmacies in the UK having to close thanks to rising costs and ‘flat’ NHS pharmacy funding.

The overall number of community pharmacies in England has fallen by 600 since 2018, about 5 per cent of the total. This number was likely kept artificially low thanks to temporary additional payments that were made to pharmacies during the Covid-19 pandemic, while many pharmacies that remain open have only done so by accepting reduced incomes and incurring more debt.

Many have also reduced the services they offer, cutting loss-making discretionary services and reducing opening hours. A FOI request has revealed that between December 2020 and July 2022, 1600 pharmacies in England reduced their opening times by an average of six hours per week in a bid to cut costs.

Many of the pharmacies that remain under threat are located in more deprived areas, where further closures of pharmacies risks widening existing health inequalities. The report warns that serious damage could be done to the NHS’ medicine supply without urgent government action to help community pharmacies remain as viable going concerns.

However, the picture looks less grim outside of England, with initiatives in Scotland and Wales producing a more stable outlook for community pharmacies there. In Wales, shifts in the balance of NHS pharmacy fees towards providing clinical services, as opposed to dispensing medicines, are being introduced, while in Scotland, prescribing pharmacists are now able to diagnose and treat a variety of conditions that previously would have required GP intervention thanks to the Pharmacy First Plus scheme.

Inflation, inflation, inflation

The report comes after Ernst & Young (EY) were commissioned by the NPA to conduct a study of the funding, policy and economic environment for independent community pharmacies in England. This study was concluded in September 2020 and predicted a deficit of £500 million in community pharmacy funding by 2024. It also asserted that the current financial framework for the NHS pharmacy network was unsustainable.

According to figures from the NPA, the inflation adjusted value of NHS community pharmacy ‘global renumeration sum’ fell by 10 per cent between 2015 and 2017 (see Figure 1 below). It has remained at £2,592 million since then, with no annual allowance for inflation. As things stand, the proportion of English NHS funding allocated to pharmacies will have fallen in real terms by over one third in the period 2015-2024, falling from 2.4 per cent to 1.6 per cent. However, higher inflation rates and increased NHS outlays mean that the drop is likely to be larger.

Figure 1 (click to enlarge): The Community Pharmacy Global Sum in England to (projected) 2024 in current prices and at 2015 prices, CPI adjusted. Source: Professor David Taylor, Professor Panos Kanavos. Authors’ estimates based on ONS and NHS data.

The current Community Pharmacy Contract Framework for England was agreed upon for the period 2019-2024, before the pandemic and the recent inflation crisis. It would have been appropriate to expect a 2 per cent annual inflation rate when the ‘flat NHS funding’ contract sum was agreed upon. However, with inflation sitting at over 10 per cent, and expected to remain there for potentially one or two years, community pharmacies in England are now facing up to net funding shortfalls of 15 per cent in 2023 and 20-25 per cent in 2024, against what could have reasonably been expected in 2019.

Following the steep rise in inflationary pressures in 2022, the new report, Protecting the UK Public Interests in NHS Community Pharmacy, was commissioned by the NPA. It urges the new government to intervene to prevent further pharmacy closures and ensure the viability of the sector throughout the current period of economic turbulence.

The report does, however, point to some signs for long-term optimism, notably the fact that all new pharmacy graduates will qualify as prescribers by 2026. The government has recently announced its ambition for community pharmacy to assume some of the clinical services burden, thus relieving pressures on GP practices and A&E departments.

Such measures were also recommended by a recent Public Policy Projects report, ICS Futures, and the NPA say that that under the new integrated care systems, a transformation of community pharmacy’s role can be achieved, “given sufficient political, managerial and professional will to pursue the public’s best interests.”

Health Inequality, Population Health, Primary Care, Thought Leadership September 30, 2022

Has the government given up on its health ambitions?

By David Duffy

David Duffy analyses Theresa's Coffey's start as health secretary.

Despite the already catastrophic impact of the government’s mini-budget, the first casualty of the government’s short-termist approach to governing was health and care.

Amid the ongoing response to the government’s remarkably misguided mini-budget, recent announcements from DHSC have flown somewhat under the radar of national media. But last Friday’s postponement of the health inequalities white paper is a reflection of a 12-year-old government who have become devoid of long-term strategic thinking in health and care.

Much like how Mr Kwarteng’s budget is being criticised for seeking a short-term growth boost while sacrificing economic stability, Ms Coffey’s health announcements so far seem to be aimed at garnering public support in the short term, and fail to into account the long-term causes of ill health and the enduring challenges facing the sector. Our Plan for Patients, Thérèse Coffey’s first stab at a plan for health and care, is receiving as much attention for what it misses as what it includes, with glaring omissions around workforce strategy and health inequality.

Last week it was reported that new Health and Care Secretary intends to postpone, and potentially scrap, the publication of the long-awaited government health inequalities white paper. It is estimated that health inequalities cost the UK £31 billion to £33 billion per annum before Covid-19 and the paper was a key part of Boris Johnson’s leveling up initiative. When first announced by then Health Secretary Sajid Javid back in February, the intention was to set out “bold action” to deal with disparities in health outcomes based on race, gender and income.

In response, over 155 members of the Inequalities in Health Alliance (IHA) last week wrote to Coffey urging her to maintain the commitment to publishing a Health Disparities White Paper (HDWP) by the end of this year.

The Alliance said: “The DHSC and NHS will be left in the ultimately unsustainable position of trying to treat illness created by the environments people live in”.

The IHA have urged for the government to restate its commitment to health inequalities, warning that “focusing on individual behaviors and access to services alone will not be enough to close the almost 20-year gap in healthy life expectancy that exists in England between those from the least and most deprived communities.”

“that the Secretary of State has so far chosen to ignore the issue almost entirely poses ominous signs for the future health of the nation”

Whether or not you agreed that Johnson’s levelling up initiative was ever truly going to become a reality, it did help kickstart hugely beneficial discourse around health inequality, further prompted by the uneven impact of Covid-19. It was clear from recent Public Policy Projects meetings between system leaders that there is a growing consensus that tackling health inequality is the central objective of integrated care systems (ICSs). With ICS leaders in agreement on the need for action, what has happened to the government’s desire for “bold action” on health inequality?

The obvious answer is that while the economy is rapidly deteriorating and every government department is being asked to find ‘efficiency savings’, long term social and economic rejuvenation is taking a back seat. But in the context of a deepening cost of living crisis, the fact that the new Secretary of State has so far chosen to ignore the issue almost entirely poses ominous signs for the future health of the nation.

Cost of living

Recent polling from the Roya College of Physicians has found that even by May 2022, 55 per cent of people felt their health had been negatively affected by the rising cost of living, with the increasing costs of heating (84 per cent), food (78 per cent) and transport (46 per cent) reported as the top three factors.

Rising costs are creating environments for preventable ill health to manifest in deprived areas across the nation, ultimately impacting health services – but of course, the crisis directly impacts health providers, as well as those delivering care.

NHS Providers have published a shocking new survey from its membership, revealing that some staff are electing to not eat during work hours in order to provide for their children, with some quitting altogether to find better paid work in pubs and bars. Other key findings from the survey include:

71 per cent of trust leaders reported that many staff are struggling to afford to travel to work;
69 per cent said the cost of living is having a ‘significant or severe’ impact on their ability to recruit lower-paid roles such as porters and healthcare assistants;
61 per cent reported a rise in mental health sickness absence;
81 per cent are ‘moderately or extremely’ concerned about staff’s physical health;
95 per cent said that cost of living increases had significantly or severely worsened local health inequalities;
72 per cent said they have seen more people coming to mental health services due to stress, debt and poverty;
51 per cent said they have seen an increase in safeguarding concerns as a result of people’s living conditions.

The health and care community is united in its concern for the wellbeing of its staff and for their capability to respond to the underlying causes of the nation’s health challenges. Unfortunately, the government is failing to match this concern with sound, long-term policy – this epitomised by Our Plan for Patients.

In some ways, it can hardly be a shock that the government is losing its desire to implement long-term health policy; Coffey is the country’s fifth Secretary of State for Health in as many years and must also balance this role with the position of Deputy Prime Minister. Even still, much of the sector has been taken back by some of Our Plan for Patients’ glaring omissions, as well as questioning some of the key commitments within it.

In setting out her key priorities as Health Secretary, the threadbare document published last week attempts to establish Coffey as a “champion” for patients. So far, the plan has achieved little more than alienating much of the health and care community, while simultaneously discrediting the last 12 years of government health policy.

Primary care

“Ministers are quick use the pandemic to excuse ominous backlogs in elective care, yet they do not offer the same leeway for the primary care sector”

One of the central aims of Our Plan for Patients is the expectation for all patients to receive a GP appointment within two weeks of request. In setting this wholly unrealistic, arbitrary national target, without providing additional support for GPs to achieve it, Coffey is seeking to create a doctors vs patients dynamic.

It’s a cheap tactic, designed to pick up votes, and the right wing press immediately came out in support of it. The Daily Mail blamed ‘soulless megapractices’ for ‘Glastonbury style 8am ticket rushes’ – the simple and highly flawed suggestion is that GPs must ‘do more’ and ‘care more’ to improve access to services.

“Targets don’t create doctors,” said Helen Buckingham from the Nuffield Trust, one of many organisations and figures who criticised the target. Former Health Secretary Jeremy Hunt insisted in the Commons that “adding a 73rd national” target for GPs would not address the challenges in the sector. Matthew Taylor Chief Executive of the NHS Confederation simply said the plans “do not go far enough”.

Fundamentally, the UK has a rapidly ageing population with increasingly complex conditions and comorbidities to manage – and it does not have the staff to deal with it. The Health Foundation recently revealed a shortage of full-time 4,200 GPs, with that number projected to rise to about 8,900 by 2030/31. Further, there are 132,000 vacant posts across the NHS. This number includes 47,000 nurses and more than 10,000 doctors.

In the face of these challenges, primary care teams continue to perform remarkably. The latest figures show that GPs carried out 26.6 million appointments in August, up from the previous month and over three million more than in August 2019 – before the pandemic. Nearly half of appointments in August took place on the same day that they were booked and over 80 per cent within two weeks of booking. Almost 70 per cent of these appointments were delivered face-to-face.

Ministers are quick use the pandemic to excuse ominous backlogs in elective care (despite the fact that there were already four million people on waiting lists before Covid-19 hit), and yet they do not offer the same leeway for the primary care sector and continuously fail to acknowledge its achievements.

Primary care was at the centre of the UK’s highly successful Covid vaccine rollout, one of the few genuine achievements of Boris Johnson’s government. All the while the sector maintained impressive rates of service delivery in other areas and managed to rapidly adapt to digital consultations, ensuring that as many patients as possible received care with little to no infection risk.

Rather than support and celebrate a sector that delivered when we most needed it, the government has decided to point the finger at primary care – demanding more from GPs without providing them with the means to deliver.

Unfortunately, initial noises from the current ‘government in waiting’ will have done little to reassure primary care professionals. Shadow Health Secretary Wes Streeting has not only reaffirmed the gas lighting of GPs but has gone a step further, promising same day face-to-face GP appointments to anyone who wants them if Labour were to win power – an announcement already dismissed by the British Medical Association as “not being grounded in reality”.

Even in a political sense, this seems a needless promise to make while the Tories continue to haemorrhage support in all policy areas. A recent YouGov poll suggests that Labour are four times more trusted by the public to manage healthcare – the party should use this political capital to outline long-term health policy that addresses fundamental workforce shortages.

We need our leaders to be realistic and honest with the public about what is possible, and not automatically assume “meeting public expectations” is best for primary care without seeking to manage those expectations.

In the absence of a bona fide, long-term workforce strategy from Westminster, perhaps it is time that we had a government that faced a hard truth: that not every patient should get to see their GP upon request. Patients and end-users should be better engaged with system reform so that they are more aware of the options available to them within health and care and not resort to using GPs for every request – there are simply not enough doctors to see everyone.

Where is the integration agenda?

“This is ‘sugar rush’ politics at its worst. A short-termist approach to governing that is designed to garner a quick dose of public support while the long-term needs of the sector go ignored.”

Political leaders must reaffirm the aims and objectives in the NHS Long Term Plan and indeed the recent Health and Care Bill. In integrated care, there is a principle for care delivery which is designed to segment patients to different parts of the system – delivering them the care that most appropriately addresses their needs while protecting the precious capacity of seriously understaffed and under-resourced parts of the sector.

It is concerning that supporting the development of ICSs, and their focus on addressing health inequality through population health strategies relevant to specific regions, received so little attention in last week’s announcements. If properly supported, ICSs can act as conveners of public services beyond health and care, and so have a huge role to play in revitalising communities and addressing broader inequalities.

The term ‘ICS’ does not appear once in Our Plan for Patients, and the only references to ‘integrated care’ are made in the context of describing integrated care boards as ‘local NHS services’. The whole point of integrated care, i.e., the heart of the government’s flagship health legislation only published two months ago, is to unite a disparate health and care system under a common purpose to improve health outcomes. This of course includes providers within the NHS, but it also includes social care, primary care and wider local government and community care.

As Richard Vize outlined recently in the British Medical Journal, the government has repeated the age-old trope of essentially treating social care as a discharge service for NHS hospitals. Yes, it is true that that a healthy social care sector would alleviate pressure on the NHS, but social care should be so much more than a pressure valve for hospitals.

For many with serious and lifelong conditions, social care is the lifeline that enables them to interact with the world and live with dignity and independence. Politicians who treat social care as a mere afterthought would do well to remember this.

As well as this, the care sector harbours unique insight and intelligence into local health challenges and could provide a hugely meaningful career option for thousands of new recruits. The government should be looking to professionalise the social care sector while helping ICSs to harness the expertise that already exists within it to improve population health outcomes.

There should always be a dual purpose to health reform: addressing immediate challenges while moving towards common, long-term objectives. Immediate problem solving is essential – patients deserve the best possible care that the system is able to give them and right now they are having to wait too long to get it or not receiving it at all. But in purely focusing on the immediate, more visible issues, such as GP waiting times, the government fails to address the root of the problems. The sector needs more staff, better equipment and more resource.

To make matters worse, there are already worrying rumours that the government plans to scrap its obesity targets. Alongside smoking, obesity is one the largest preventable causes of ill health and contributes significantly to cancer rates. Scrapping targets before they have barely had a chance to have an impact makes the promise in this plan to “support people to live healthier lives” ring rather hollow.

This is ‘sugar rush’ politics at its worst. A short-termist approach to governing that is designed to garner a quick dose of public support while the long-term needs of the sector (and ultimately the public) go ignored. It seems that finally the Conservatives have now stopped pretending they have any intention of fixing this very broken health and care system.

It will be of little reassurance that DHSC has already begun rolling back some of these expectations, with the two-week GP appointment target pushed back to the Spring of 2023. The damage has been done, Coffey has drawn her ‘battle lines’, and seeds for a crisis winter like no other for health and care have already been sown. Compounding this is the fact that the government seems incapable or unwilling to provide light at the end of the tunnel in the form of a long-term plan for health and care.

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A case study in effective integration: the Staten Island PPS

By Joe Conte

Collaboration, trust and community engagement will be central to successful long term reform of health and care. This is no different in the USA.

The pandemic provided many lessons, not least of which was that the health system could quickly pivot to less costly telehealth, digital and virtual care. For over two decades, these services were available but adopted reluctantly and not well capitalised upon.

One reason is that healthcare is faced with the inherent conflict between investment in bricks and mortar, and a model of care that is more patient-centred and community-based. The US model of care is heavily invested in expensive infrastructure and its healthcare bill is nearing $4 trillion, almost double the per capita cost of other industrialised nations. Despite this extraordinary expense, quality outcomes lag global norms, as does US life expectancy.

Delivery System Reform Incentive Payment programme

According to Forbes, US expenditure on healthcare is expected to be nearly $6 trillion by 2027. The redesign of healthcare is a matter of national importance, not just because of cost but the health disparities resulting from it. One strategy is the focus on moving from volume to value, as Michael Porter advocates in his book, Redefining Health Care.

The Delivery System Reform Incentive Payment (DSRIP) was designed to improve clinical quality while reducing costs and promoting the transition from volume to value. In April 2014, the Center for Medicaid/Medicare Services (CMS) approved New York State’s (NYS) Medicaid redesign waiver, known as DSRIP, in the amount of $8 billion over five years. To earn the maximum $8 billion valuation, performance on specific, pre-set quality and utilisation targets needed to be achieved with a focus on incentivising value. The waiver permits states to use Medicaid funding in ways not specifically authorised in Federal rules so that innovative strategies may be deployed to test new models of care using non-traditional services.

“Community engagement, trust and collaboration were keys to the success of the PPS programme.”

Joe Conte, Executive Director, Staten Island Performing Provider System

To achieve rapid change and capitalise on innovative strategies to affect nearly six million Medicaid recipients, NYS approved 25 provider networks, spread throughout the state. Known as performing provider systems (PPS), they were geographically disparate, with vastly differing population health needs and provider capacities. Their potential individual earnings over the five-year programme ranged from $45 million to $1.2 billion. Staten Island PPS (SI PPS) charted its own unique course improving population health outcomes while creating significant changes in the health care dynamic of the community.

Staten Island PPS background and programme description

Staten Island, with a population of about 500,000 is one of the five boroughs of NYC, with more than 30 per cent of the community covered by Medicaid. The SI PPS is a network of 70 medical, behavioural and social service providers, nursing homes, federally qualified health centres, primary care practices, and faith-based and community-based organisations. When the 1115 Waiver opportunity (which typically reflect priorities identified by the states and the federal Centers for Medicare and Medicaid Services) was presented to the community, great interest was demonstrated. The two major hospital systems were the anchor organisations.

According to New York State Department of Health, SI PPS funding was set at a valuation of roughly $208 million based on projects selected and clinical performance variables. Partner organisations attended facilitated workshops to analyse population health data to select 11 programmes (see table below) from among 50 offered. Over the course of a year, the process contributed to a sense of inclusion by the stakeholders and ownership of the implementation strategy devised for each of the programmes.

Table 1: Initial SI PPS Projects: 94,505 patients actively engaged (click to enlarge)

Table 1 illustrates the projects selected by SI PPS and the number of lives that needed to be “actively engaged” to achieve improvement goals. Each year, performance requirements and the number of lives increased and performance targets were reset based on prior year achievements. Certain indicators identified as critical to a programme’s success were associated with high-performance funds (HPF) that rewarded organisations for performance when a gap-to-goal of greater than 20 per cent was achieved. Depending on how many organisations achieved those metrics, the HPF could mean millions in additional revenue. In the Outcomes section, you will see that this resulted in a significant bonus payment to SI PPS.

System of care

To achieve performance goals, SI PPS used a standardised approach that focused on a system of care methodology. Systemic identification of gaps in services, skills, and community resources led to the design, implementation, evaluation, refinement, and sustainability of programmes. These addressed gaps identified from quantitative and qualitative assessments and have been implemented with SI PPS oversight, funding, and other resource support. Two use cases of the model are described below.

Major reorganisation of the community-based care model was at the core of DSRIP transformation, including the integration of medical providers in behavioural health clinics to provide physical health services to improve health outcomes and use of data to drive changes in the model. Staten Island PPS’ analytic platform showed that more than 50 per cent or preventable ER care was driven by five per cent of patients. The vast majority with behavioural health needs of non-emergent nature. Delivery of integrated behavioural health and primary care services to individuals diagnosed behavioural health issues ensures co-ordination of care for both types of services and reduced ER visits.

In nursing homes, SI PPS analytics demonstrated that sepsis hospitalisations were driving significant admission and re-admission rates. A quality initiative was created to focus on early identification and standardised treatment across all 10 skilled nursing facilities in Staten Island. Additional training, equipment standardisation and clinical protocols were developed. After 12 months, sepsis hospitalisations were reduced by 23 per cent and the gains continue.

The SI PPS programme relied on the use of business intelligence enabled by data exchange among partners, transforming traditional outcome strategies that produced excellent utilisation and population health improvement.

Technology platform: business intelligence

To create a data-driven culture and use business intelligence to guide programme design, innovative initiatives and performance measurement, SI PPS created an advanced population health management (PHM) ecosystem that monitors outcomes of care at an individual, practice and population level.

The PHM platform illustrated in Diagram 1 (below) integrated health data from multiple sources, including claims, clinical data, emergency management systems (911), law enforcement data, payor data and clinical event notifications (CEN) from the local health information exchange (HIE). The platform contained harmonised individual patient records and analytic tools to facilitate care delivery across Staten Island. The platform’s geo-mapping and hot-spotting capability made it possible to see geographic areas with service, health outcome and social determinant of health gaps. The tool enabled SI PPS and partner organisations to track progress toward outcome targets and provided a clear, comprehensive and population-based understanding of care quality and cost outcomes. SI PPS created its own social determinants of health system called WeSource to assess and refer clients to needed social services while linking to their clinical profile.

Highlights of PPS outcomes

2020, final performance metrics for the five-year programme were released. SI PPS was recognised as the top performer in NY and awarded $62 million in bonus payments.

Key outcomes of the programme include:

A 400 per cent expansion of access to medication assisted treatment for people with opioid use disorder (Hospital Times, 2019)
Reductions in ER use by more than 25 per cent for high-risk clients engaged in a comprehensive care co-ordination programme called HEALTHi, which provided critical time intervention to people with multiple complex conditions
Avoidable hospital readmissions reduced by 25 per cent via intensive care co-ordination model
Sepsis intervention programme reduced hospital transfers from nursing homes by 23 per cent and saved more than $3 million annually (Journal of Long-Term Care, LSE)
Shelter to permanent housing program with NYC Department of Social Services (DSS) saved on average $25,000 per family
Creation of training programme to educate and place certified recovery peer advocates (CRPA) and community health workers (CHW) in the ER and other high-impact settings
Development of an asthma home visit programme for adolescent super utilisers
Creation of SDOH network to assess and meet needs such as food insecurity, employment, training and housing for more than 28,000 families
A safe prescriber programme educated prescribers about opioid alternatives and evidence-based prescribing algorithms reduced unnecessary prescriptions for opioids by 31 per cent
Comprehensive cultural competency and health literacy training programmes for partner organisations delivered 70,000 hours of training to partner staff

Collaboration is key

Community engagement, trust and collaboration were the keys to success of the PPS programme. Although significant strides were made to begin to transform the delivery of care on Staten Island, much work is to be done locally and nationally to improve quality and reduce costs for the sickest and most vulnerable patients. Governments, payers and regulatory agencies must work rapidly to develop innovative payment systems that incentive value over volume, and to address significant health disparities among historically marginalised communities in an effort to reduce rising costs and poor health outcomes.

Why is technology underrepresented in the training of health, housing and care professionals?

By Tunstall Healthcare

Andy Hart, Head of Delivery and Technical Support at Tunstall Healthcare, discusses why educating health, housing and social care professionals is vital to meet the needs of our growing and ageing population.

People today are living much longer. It’s recently been reported that the UK’s population hit a record with over-65s overtaking under-15s, and by 2030 it is estimated that 1 in 6 people globally will be aged 60 years or over.

But living longer does not necessarily mean living more healthily. Long-term health conditions are more prevalent in older people, with approximately 15 million people in the UK requiring health and social care services for chronic illnesses.

Andy Hart, Head of Delivery and Technical Support at Tunstall Healthcare, discusses why educating health, housing and social care professionals in the benefits and appropriate use of technology is crucial if we are to improve service provision, and why technology continues to be underrepresented in training.

Why technology is underrepresented

The urgent need to invest in preventative services and early interventions to reduce pressures on our services is being increasingly recognised. In fact, almost two thirds (63 per cent) of directors of adult social care recently indicated that their local authorities were taking positive investment strategies in digital and technology.

However, large-scale change involving health and care technology is complex and presents many challenges for the stakeholders involved. Key barriers to successful digital evolution include the budget constraints and the cost of implementing new systems, organisational attitudes towards risk, and the relationships that exist between health, housing and social care services.

Most of these barriers can be mitigated through greater training and the education of professionals. Greater education will help to build partnerships, maximise the use of data, drive cultural change and bring staff on the digital journey, whilst supporting them in their roles.

Investing in education

People are the greatest asset of any organisation and, like any other asset, they need investment and maintenance. The next generation of health, housing and care leaders require support if they are to continue to develop themselves, and therefore their teams and services.

The education of professionals within these sectors is crucial in enabling a cultural shift so that staff understand the value and use of technology, and how it can support them in effective caregiving, as well as improving the quality of life of the people being cared for.

With the right education staff should reap a number of benefits, including becoming more aware of the features of telecare devices, developing confidence in assessing and referring end users to the right solutions, and understanding the positive impact of telecare on working practices.

As the Occupational Therapy programme lead at the University of Lincoln, Carol Duff is significantly involved in the education of Occupational Therapists. She commented: “It’s very important that we give our students the opportunity to gain practical confidence in the use of digital solutions in a safe setting that are essential to support their practice in health and social care.

“Technological solutions may mean our patients are able to remain safely at home for longer and avoid or delay moving into hospital or into care. It is essential that our occupational therapists of the future can confidently and creatively explore digital solutions that may also reduce pressure on the system and release time to care.”

A digital future

With the impending changes to our telecoms network, digital is fast becoming the industry standard to ensure the safety of health and social care services, staff and end users.

New kinds of leadership will be needed to deliver change and evolve governance, while at the same time improving the working lives and motivation of employees. Cementing a cultural shift towards technology driven, outcomes-led approaches is required to achieve this, and in turn, this needs early engagement from professionals and an understanding that technology is designed to provide support, rather than to replace.

By harnessing the benefits of training and education, we can raise awareness of the value and potential of technology across the healthcare landscape, and provide enhanced support to users, carers, professionals and providers.

For more information on educating the future generation of health, housing and social care professionals, please visit www.tunstall.co.uk/training-services.

Emil Peters discusses the next steps for the health and care technology sector

By David Duffy

Emil Peters speaks to Integrated Care Journal

Recently appointed CEO of Tunstall Healthcare, Emil Peters speaks to ICJ about the future of telecare and telehealth and the impact of a seismic era of system transformation for UK health and care.

“Great advances in medicine have been made during periods of immense stress and strain,” says Emil Peters, recently appointed Tunstall CEO. Peters finds himself at the helm of the largest social care technology provider in the country during a period of critical reform for the health sector. “A lot of our early medicinal advances originated from battlefields and war injuries,” explains Peters and the pandemic, he insists, has been the latest catalyst for change in the health sector – but the reform has not come from new antibiotics or medicines, but a newfound acceptance of the value of medical technologies, such as telehealth.

“Tunstall today has become an integral part of a constantly evolving definition of health and care“

Peters, who moved to Tunstall after 25 years at health technology giant Cerner (the last five of which were spent as President of the International markets), is no stranger to major upheaval in health reform – but even he would admit that the current period of turbulence is unlike any other the sector has faced. He enters his new role as the UK government releases a slew of policy reforms, with the intention of turbo charging a digital and data led transformation of the health and care sector. The latest paper Digital revolution to bust COVID backlogs and deliver more tailored care for patients, places telehealth as a central priority of the government’s digital transformation of the sector.

Peters likens Covid-19 to a dark cloud with a silver lining, “the pandemic has given us lived experience of technology, forcing our lives to be lived through screens whether they be your phone or whether they be your computer or your television.” Interestingly, Tunstall began as a Yorkshire based television repair company but has since grow to over five million users globally and almost two million in the UK alone, becoming one of the biggest players in telecare in the process. Now, Peters hopes to use this position of strengths to take on a newfound leadership position within the sector, helping to drive technology based transformational change, enhancing access to health care to disenfranchised communities and reducing rampant health inequality across the country.

At one point, the health tech industry was still arguing with hospitals as to the benefits of using digital over paper-based methods. Today it is widely accepted that telehealth is now central to the evolution of the concepts of health and care. “Through being able to connect patients and carers in the broadest possible terms, Tunstall today has become an integral part of a constantly evolving definition of health and care,” affirms Peters.

Evolving telehealth in an ICS context

If Covid was the “slap in the face” as to the value and potential of health and care technologies, then the prospect of integrated care in the UK could prove to be the mechanism which permanently embeds technology like telecare and telehealth into care pathways.

Each integrated care system (ICS) has placed preventative and personalised care, defined through population health management approaches, as central priorities to care delivery. In many ways, telecare and telehealth could be the glue that connects ICS wellness strategy, via enhanced access to care and reduced strain on healthcare services.

“The pandemic reminded all of us of the value of working together”

Previous barriers to technology adoption are being eroded in favour of holistically implemented transformational change and the rapid growth of the telehealth sector is helping to shift discourse away from simply reducing acute sector pressures. Priorities are now shifting towards maintaining good health for people as long as possible, keeping people healthy and supporting them in the best version of their life as they define it.

“Among many other things, the pandemic reminded all of us of the value of working together. Previous hesitations to collaboration have held the sector back – but these barriers are gradually being eroded and this collaborative momentum has manifested itself in the integrated care agenda.

“In the same vein that we used technology for our supply and demand calculations for the testing of PPE, we now need to think about that in terms of cancer, orthopaedics, neurology, all the other things that we need to be bringing to people because frankly, we kind of went away with that.”

A new era for health and care technology?

Peters considers the current moment a once in a generation opportunity to shift norms. “Historically the system has found ways of preserving itself. We were constantly training for trying to find ways to preserve what we have. Business as usual is no longer an option.”

“I’ve seen a lot of ‘tech for tech’s sake’, and those endeavours tend to be like shooting stars. They burn bright and they fade away“

“Telehealth can enable clinicians to see the people they need to see. It allows people within the clinical space to operate to the top of their licence. And it allows me as a son and as a neighbour to operate to the top of my licence when caring for loved ones. Technology like telecare can help me check in on my elderly neighbour, to check in on my mother, who lives in San Antonio, Texas, thousands of miles away.”

Peters’ bread and butter is facilitating health and care innovation but his focus with Tunstall will be less on the outright ‘technical innovation’. Rather, Peters is interested in innovating the constructs of how they apply technology. “Our focus is much more centred on value. What is the value of what we’re about to go do? Is it just tech for tech’s sake? Or is there a clearly defined purpose in mind?”

Peters wants to move the sector from a ‘thousand flowers blooming at once’ mentality to innovation, and towards a focused approach built upon consistent standards. “I’ve seen a lot of ‘tech for tech’s sake’, and those endeavours tend to be like shooting stars. They burn bright and they fade away. But the innovations that really produce value for the provider, for the person, for the family, those are the things that that will truly be lasting.”

“It’s up to us, how much we harness this moment,” insists Peters, who warns that a complacent approach to innovation risks returning to a ‘business as normal scenario’. “Are we going to try to fight to go back to the way that we did and run our outpatient clinics the way that we had? Or has this given us a new view on how things can happen? Clinicians want and need to spend time with the people that truly need attention from someone of their levels of qualifications and who can truly have an impact.”

In Peters’ mind, the impact that is needed with technology cannot be understated insisting that, “it must become this century’s version of a clean water supply for the health and care sector.”

In September 2022, Tunstall will be joining ICJ and PPP for the ICS Roadhshow, a series of regional conferences to discuss the progress of integrated care at a localised level. To find out how to get involved, please visit our ICS Roadshow homepage.

Over half of Brits say their health has worsened due to rising cost of living

By Gabriel Blaazer

Over half of Brits (55 per cent) feel their health has been negatively affected by the rising cost of living, according to a YouGov poll commissioned by the Royal College of Physicians (RCP).

Of those who reported their health getting worse, 84 per cent said it was due to increased heating costs, over three quarters (78 per cent) a result of the rising cost of food and almost half (46 per cent) down to transport costs rising.

One in four (25 per cent) of those who said that their health had been negatively affected by the rising cost of living, had also been told this by a doctor or other medical professional.

16 per cent of those impacted by the rising cost of living had been told by a doctor or health professional in the last year that stress caused by rising living costs had worsened their health. 12 per cent had been told by a healthcare professional that their health had been made worse by the money they were having to spend on their heating and cooking.

The experiences of RCP members who responded to the poll include a woman whose ulcers on their fingertips were made worse by her house being cold and a patient not being able to afford to travel to hospital for lung cancer investigation and treatment. Other reports include respiratory conditions such as asthma and COPD being made worse by pollution and exposure to mould due to the location and quality of council housing.

Health inequalities – unfair and avoidable differences in health and access to healthcare across the population, and between different groups within society – have long been an issue in England, but the rising cost of living has exacerbated them.

The Inequalities in Health Alliance (IHA), a group of over 200 organisations convened by the RCP, is calling for a cross-government strategy to reduce health inequalities – one that covers areas such as poor housing, food quality, communities and place, employment, racism and discrimination, transport and air pollution. The government recently announced that it will publish a white paper on health disparities and the IHA is calling for it to commit to action on the social determinants of health. These largely sit outside the responsibility of the Department of Health and Social Care and the NHS.

Responding to these findings, Dr Andrew Goddard, President of the Royal College of Physicians, said: “The cost-of-living crisis has barely begun so the fact that one in two people is already experiencing worsening health should sound alarm bells, especially at a time when our health service is under more pressure than ever before.

“The health disparities white paper due later this year must lay out plans for a concerted effort from the whole of government to reduce health inequality. We can’t continue to see health inequality as an issue for health directives to solve. A cross-government approach to tackling the underlying causes of ill health will improve lives, protect the NHS and strengthen the economy.”

Professor Sir Michael Marmot, Director of the UCL Institute of Health Equity, commented: “This survey demonstrates that the cost of living crisis is damaging the perceived health and wellbeing of poorer people. The surprise is that people in above average income groups are affected, too. More than half say that their physical and mental health is affected by the rising cost of living, in particular food, heating and transport.

“In my recommendations for how to reduce health inequalities, sufficient income for a healthy life was one among six. But it is crucial as it relates so strongly to many of the others, in particular early child development, housing and health behaviours. As these figures show, the cost of living crisis is a potent cause of stress. If we require anything of government, at a minimum, it is to enable people to have the means to pursue a healthy life.”

Also responding to the survey was NHS Providers Chief Executive, Chris Hopson, who said: “Trust leaders are acutely aware of the soaring cost of living crisis facing the nation and the impact rising financial pressures could have on people’s health.

“This is particularly concerning in the wake of the COVID-19 pandemic which exposed deeply entrenched social, racial and health inequalities. As highlighted in this survey, there is a risk that the current cost of living crisis widens those inequalities.

“Trust leaders share the view that there is an opportunity to tackle the factors which lead to health inequalities and poor health. They have committed time and resource to reducing inequalities across their local communities.”

How ICSs can help uproot risk aversion and progress innovation

By David Duffy

Integrated Care Journal speaks with Kathy Scott and Aejaz Zahid of the Yorkshire & Humber Academic Health Science Network (AHSN) on how the implementation of a dedicated innovation hub within ICS frameworks has helped to streamline innovation and improve patient care.

Above: Barnsley Hospital, part of South Yorkshire and Bassetlaw ICS.

Integration and innovation are two increasingly prominent principles that are, in part, designed to address the growing problems of unmet health needs. Each is intended to supplement and support the development of the other.

Integrated care systems (ICSs) offer new frameworks through which innovation can be adopted at scale, streamlining past previous bureaucratic and individualistic barriers to change and adopting a transformation led approach. Innovation is crucial in turning the core aspirations of integrated care into tangible realties, to use technology and sophisticated approaches to data to help address the root causes of ill-health and expand health service offerings.

The above outlines the core principles of integration and innovation, which can be found reiterated from a wealth of sources, if one is to engage in the sector for even a few days. Integrated care is not a new concept and neither is innovation, so how are these two principles coming together to improve patient outcomes in reality?

“There is a vast range of unmet need across the whole health and care sector.”

“There is a vast range of unmet need across the whole health and care sector,” says Aejaz Zahid, Yorkshire & Humber AHSN’s Director for the ICS Innovation Hub at South Yorkshire & Bassetlaw Integrated Care System (SYB ICS). “Much of this is of course clinical, but a huge part of this is more operational, system level needs.

“The ICS needs intelligence on all of this, but then must ascertain how it can use innovation to leverage economies of scale in terms of investing and finding solutions to those problems and challenges. What we are trying to do within the innovation hub is create straightforward and easily accessible processes which enable busy staff working on the ground to regularly bring those challenges and problems to our attention, while enabling ICS leadership to ascertain and prioritise needs which could benefit from a systemwide innovative solution.”

The ICS Innovation Hub is a single point of contact for health and care innovators in the SYB region. The hub works, via the AHSN, to identify and validate market ready innovations and help drive improved health outcomes, clinical processes and patient experience across the SYB health economy. The idea to set up a dedicated innovation hub within an ICS was developed by the Yorkshire & Humber Academic Health Science Network (Yorkshire & Humber AHSN) and has proved a successful model to help spread and adopt innovations at pace and scale. Yorkshire & Humber AHSN also provides innovation support to three different ICSs in the region.

Fostering a culture of innovation

Explaining how the Hub, and by extension, Yorkshire & Humber AHSN are working to cultivate innovation in the region, its Chief Operating Officer and Deputy CEO, Kathy Scott says “it is as much about identifying good practice as it is implementing the ‘shiny stuff’.

“As an AHSN we also have sight of a lot of potential solutions that can address those needs often identified by the innovation hub. So, we are able to nudge the ICS leadership towards potential solutions.

“We can push out new ideas and innovations as much as we like, but if you don’t have that culture of innovation and improvement there, it’s not going to stick.”

“It’s about growing the capability and capacity for change within a locality and for improvement techniques and innovation adaptive solutions to be implemented. Not simply implementing new technology and essentially running away.

“We can push out new ideas and innovations as much as we like,” continues Kathy, “but if you don’t have that culture of innovation and improvement there, it’s not going to stick.”

The ICS’s digital focus has also enabled significant work on pre-emptive care. For example, through the Yorkshire & Humber AHSN’s digital accelerator programme Propel@YH, the AHSN has worked with innovator DigiBete to support the adoption of their “one stop shop” app to help young people living with diabetes manage their treatment.

The app was clinically approved during the height of the pandemic, with extra funding provided from NHS England, and is now being used in 600 services across England. “This is an excellent example of how we can pre-emptively assess unmet need and streamline innovation into the system,” says Kathy.

Innovation as an antidote to health inequality

“Health inequalities are part of our design thinking from the get-go in any project,” says Aejaz, who points to the recent implementation of SkinVision, a tele dermatology app, as an example.

“The app was originally developed in the Netherlands, where predominantly you would have Caucasian skin that the AI would have been trained on,” he explains, “so, from the beginning, we have been mindful to capture more data on how well the app works on other skin types and feed that back to the company to improve their AI algorithms for wider populations.”

The Innovation Hub also works to ensure that implementing digital technology does not exacerbate inequality for less digitally mature users. “If somebody, for example, doesn’t have a smartphone that is able to run that app, there is always the non-digital pathway in parallel. So, it’s never either/or.”

An appetite for risk

“There is always a level of risk aversion when it comes to adopting something new in healthcare,” says Aejaz, “even with evidence backed solutions, we find there’s sometimes a level of reluctance. Staff want to know whether it’s going to work in their local context or not and whether introducing innovation would entail a significant ‘adoption’ curve. Building enthusiasm around a new idea and overcoming hesitancy to innovation is, therefore, central to the role of organisations such as the AHSN and, by extension, ICS innovation hubs.

“Building a culture of innovation is fundamentally about building a culture of increased risk appetite, where failure is most certainly an option.”

“Building a culture of innovation is fundamentally about building a culture of increased risk appetite, where failure is most certainly an option,” Aejaz continues. “We need to create systems which provide innovators with the necessary psychological safety that allows them to experiment.”

To help shift the mindset of NHS staff in favour of innovation, the Innovation Hub established a series of ‘exemplar projects’, designed to erode the fear of failure and capture learnings in the process. For example, for Population Health Management exemplars, one of the priority themes for the ICS, the hub called for providers to submit ideas to the Hub, all framed under high priority population health challenges such as cardiovascular health. Successful applicants with promising ideas received funding in the region of £25,000 as well as co-ordination support from the Hub towards their project.

The programme has enabled frontline innovators and has led to the development of a host of new services incorporating novel technologies, such as virtual wards and remote rehabilitation. The Hub is also working to transform dermatology pathways throughout the SYB region by introducing an app that allows patients to upload images of skin conditions and be processed more efficiently through the system. Funded by an NHSx Digital Partnerships award, this pilot project with Dermatology services in the Barnsley region will test out the use of this AI-enabled app to ascertain how well it can successfully identify low risk skin lesions which can be addressed in primary care. Thereby reducing demand on secondary care and speeding up access for higher risk patients. Each of these projects demonstrate the capacity for transformation when on the ground staff are given the freedom to innovate.

Interestingly, many of the ideas that the Hub works with are non-tech solutions. For example, primary care providers working with local football teams via a 12-week health coaching programme to engage with fans who may be at risk of cardiovascular disease, or introducing Cognitive Behaviour Therapy techniques to patients with severe respiratory conditions to help reduce anxiety when experiencing an episode of breathlessness.

To nurture a mentality more open to change, the Innovation Hub has developed learning networks across South Yorkshire. Through these networks, the Innovation Hub and AHSN teams have been reaching out to key leads from each of the provider organisations who are involved in innovation, improvement or research and invited them to become innovation ambassadors. “These ambassadors have become our eyes and ears on the ground across health providers, where they can start to introduce what we do and also help capture unmet needs from colleagues in their respective organisations,” explains Kathy.

Following in the footsteps of the first innovation hub established by the Yorkshire & Humber AHSN in South Yorkshire, other AHSNs across the country are now looking at setting up innovation hubs within their ICS by bringing leadership together, getting them out of their ‘comfort zone’ and giving them the space to innovate, and hoping to chip away at risk aversion and fear of experimentation. Introducing solutions outside of traditional domains will enable a culture of innovation and improvement. To streamline past bureaucratic and individualistic hurdles, ICS frameworks are key to facilitating transformational change in every region of the country.

If you would like to find out more about the Yorkshire & Humber AHSN, please contact info@yhahsn.com

Government failing on social care and health inequalities

By Kari Gerstheimer

The government’s failure to reform social care funding in the Health and Care Act is compounding regional health inequalities, writes Kari Gerstheimer, CEO and Founder of Access Social Care.

Speaking before a Cabinet meeting last month Boris Johnson stated that: “With household bills and living costs rising in the face of global challenges, easing the burden on the British people and growing our economy must be a team effort across Cabinet.” He added that “we will continue to do all we can to support people without letting Government spending and debt spiral, whilst continuing to help Brits to find good jobs and earn more, no matter where they live.”

However, the Prime Minister’s own assurances on protecting the British public from rising costs were set against the Government’s actions regarding the Health and Care Act, which has just been enshrined in law.

The Prime Minister continues to make promises to help the British people with the growing cost burden, while the Health and Care Act leaves those on the lowest income exposed to spending a greater proportion of their assets on care costs, during the worst financial crisis we have seen in generations.

The Government’s own amendment to the Bill, which was subject to a fierce debate in both chambers of Parliament before ultimately being voted through, means that the local authority support people receive to help them meet their care costs, will no longer count towards the proposed £86,000 cap.

This is all the while that the PM has continued to make promises to address the decades-long social care funding crisis and widening health inequalities. The £5 billion in extra money announced for social care over the next 3 years, is of course welcome. But there is no mathematical link between the amount of money and the level of need. The Health Foundation calculates that at least £8 billion are needed per year, just to deliver what councils are legally obliged to.

Failure on “levelling-up”

Research commissioned by Access Social Care, which provides free legal advice for those with care needs, shows that poorer areas with lower council tax and business rate yields have been worse affected by the reduction in the central Government grant for social care.

This means that people living in poorer areas where social care need is often the greatest, are already getting a bad deal compared to other parts of the country, which flies in the face of the much-vaunted concept of “levelling-up.”

Rather than addressing this unfairness, the Government’s amendment is compounding it, by leaving people living in ‘red wall’ areas having to spend a greater percentage of their total assets on care.

The Health and Care Act is a clear contradiction in the PM’s assurance to focus efforts on easing the burden for British people and protecting the public from rising costs. It will instead deepen the cost of living to the poorest of our society and widen long-standing health inequalities.

Access Social Care are already seeing cases where the cost of living crisis means that people cannot afford the social care they so desperately need. The Government urgently needs to do more to ensure that everyone can get the social care they need, at a price they can afford.

Time to fix the gender diagnosis gap for autism

By Charlotte Perry

As well as increasing global acceptance and understanding of the condition, this year’s Autism Awareness Month should be used to highlight growing and concerning gender diagnosis gaps.

Four times more boys than girls are diagnosed with autism, according to Spectrum News, yet more women are referred for a diagnosis in adulthood than men. This suggests they are missed in childhood and raises questions as to whether the prevalence of autism in girls is higher than those diagnosed.

Autism effects a range of behavioural traits, from difficulties with communication skills to repetitive behaviours and overreactive sensory experiences. However, medically and socially, society has grown accustomed to recognising autism through a male presentation. Well known hallmarks of the disorder, such as hyperactivity and fixated interests, tend to be heavily externalised by boys. Meanwhile, females internalise these symptoms, and may instead present with anxiety, emotional ‘breakdowns’, and more passive bouts of misbehaviour.

Whether due to genetic differences or social expectations, there remains a concerning gender gap in both research and diagnosis. The Autistic Girls Network (AGN) campaigns for better recognition and diagnosis for autistic girls. Their 2022 white paper, Autism, Girls, & Keeping It All Inside, outlines the key differences in presentation of autism in girls compared to boys. It addresses the stereotypes leading to late referral, such as girls simply ‘being shy’, and discusses the complications when autism is left undiagnosed.

As AGN boss Cathy Wassel recently said, “we need everyone to be able to see those young people who never raise their hand or speak up in class, who are situationally mute, who are on the edge of friendship groups, who have strong sensory sensitivities. ”

AGN’s paper also suggested that 20-35 per cent of females with anorexia nervosa may also be autistic. This evidence for an increased co-occurrence of autism and eating disorders in girls is lacking representation in autism diagnostic tools, therefore widening the gender diagnosis gap.

Within their white paper, The AGN lists key recommendations that would benefit both acceptance and diagnostic tools used in relation to autism. They suggest that the presence of co-occurring health conditions should act as a flag to referral for autism investigation, with diagnostic tools adapted to include typical female presentations as well as male. Improving research not only on autism in girls, but also the intersectionality of ethnicity, aging, menstruation, and menopause is needed.

“We need to get rid of the stigma as we have a whole generation of women who weren’t recognised and are only now realising why they have felt different, and often ‘not enough’ all their lives,” continued Cathy, “we need this to happen especially in schools, which can be very difficult places for our autistic young people. ”

As Autism Awareness Month draws to a close, the push for overall acceptance and understanding across society must continue. But so should the medical and research community be urged to take practical steps to shrink diagnosis gaps based on gender and ethnicity lines. It is essential for healthcare workers to understand gender-specific presentations of autism for diagnosis, consideration and education should be systemic.