This week, the Express published an article headlined 'taxpayers billed £100 million for NHS translators – could pay for 3,000 nurses'. The story completely missed the point of what the health service does.

The standfirst went on to explain that taxpayers "pick up the bill" for translation and interpretation" to ensure that the NHS can be "accessed in languages other than English”.

Given health and healthcare access inequalities, surely spending money to ensure people get the right care they need is a good thing – not to mention a legal requirement.

The Express article published on 2 April about NHS spending on translators

The Express packaged the story to suggest that it had uncovered a scandal. It included data revealed through Freedom of Information Requests (FOI) to 251 NHS trusts and 42 integrated care boards, which “routinely convert standard hospital and health literature into languages including Romanian, Arabic, Urdu, Bengali and Punjabi”.

The article included comments from a Reform Party spokesman, claiming that translation and interpretation services "were simply not necessary" and that artificial intelligence apps, such as Google Translate, could do the job – or that patients could use family members to translate for them.

The Express article followed the Mail’s report last week on National Trust cafés selling “woke scones” (made with margarine and not butter). It was another example of 'stories’ aimed at stirring up problems, rather than solving them.

The Mail article published on 31 March on 'woke scones'

Helping those in need be heard appears to be a bizarre issue to weaponise in manufactured 'culture wars’.

For starters, the total NHS spend in England for the last financial year was more than £180 billion, with a further £20 billion in local government spending on social care. So £100 million on translation might sound like a big number, but it is a tiny fraction of expenditure and would make little dent in nurse staffing across all NHS organisations.

Citizens or legal residents who don’t speak fluent or even basic English are, just like people with hearing loss, learning disabilities or cognitive impairment, as entitled to NHS care as the rest of the population. And there is already considerable evidence that they are not getting it, with health and healthcare access inequalities between different ethnic communities.

Denying people written information in their own language will only make matters worse.

When people who are sick, scared, vulnerable, distressed or have symptoms to discuss, treatments to understand, or complex psychosocial factors to explain, how can the quality and safety of the care they receive be improved if they can neither express nor understand key information?

There are also legal considerations. To provide valid consent to treatment in common law, patients must have sufficient information about the details, risks, potential harms and benefits of a proposed treatment (which could in some cases involve major surgery, powerful drugs or admission to intensive care). Language barriers must be overcome to make this a reality.

The Mental Capacity Act states that all reasonable efforts must be made to establish decision-specific capacity for treatment or care – which may include overcoming language barriers.

If patients lack capacity, then speaking to those closest to them is a key part of establishing their best interests for further decision-making. Again, this may require translators or clear written information in their first language. We do this for people with hearing loss via written communication or sign language.

Regulatory codes of practice for healthcare professionals are also clear that we must treat people equally, irrespective of characteristics including race, religion or nationality.

Using AI translation apps of variable reliability has its limits in a time-critical or emotionally-charged and challenging situation. And relying on family or friends to translate isn't always possible as not every patient is accompanied. If they are discussing personally sensitive or intimate information, they may be inhibited from doing so. If there are safeguarding concerns regarding abuse or neglect one could suspect the person translating of being coercive when doing so.

The thinly-veiled xenophobia and racism being whipped up by the Express (even against people who pay tax and National Insurance contributions and have precisely the same entitlement to care as native and confident English speakers) is part of a wider set of 'wedge issues’ being pushed by right-wing media outlets and sections of the Conservative and Reform parties.

They share a similar fixation with 'woke’ diversity managers or diversity, equality and inclusion (DEI) policies in the NHS or other public services. Several Government ministers have lined up to call for a 'war on waste’ to remove such posts and policies.

Steve Barclay, when Health Secretary in 2023, wrote to integrated care boards in England instructing them to stop recruiting staff as dedicated EDI managers, arguing that the money should be spent on “frontline staff” instead.

The Express has published a number of articles lamenting 'wokery’ in the NHS – including, in January in a story headlined 'NHS spends £40 million on woke non-jobs that could pay for 1,150 nurses'.

Last year, the Spectator ran a FOI-based story showing that, out of an NHS workforce of around 1.5 million people, there were only 800 employees in dedicated EDI roles – yet called for those roles to be abolished.

Again, those employed in such posts account for a small fraction of 1% of the entire NHS workforce or spend. Their presence is de facto required due to the Equality Act and Equality Duty on public organisations and protections in employment law.

NHS organisations do have a very diverse workforce, yet there is clear evidence of ongoing and endemic discrimination towards minorities within it. There is also consistent evidence of discrimination and care inequalities between different ethnic and socio-economic groups the NHS serves.

The idea that a focus on EDI is somehow a bad thing and a distraction from real work, or that organisations should not employ a small number of people to oversee it, is not so much a dog-whistle as a wolf-klaxon. It is a classic distraction from the real issue – the 14 years of Conservative-led mismanagement of health and social care and of wider public health.

This decline has been well-documented by the Institute for Government think tank; as well former King’s Fund chief executive Professor Sir Chris Ham, who set out in expert detail the rise and decline of the service from the late 1990s through to the 2010 election and the current crisis in performance and public satisfaction.

Blaming our NHS crisis on the cost of translation and interpretation services, and diversity and inclusion managers, foments hostility against people from ethnic minorities, white people with poor English skills, and even those with full entitlement to use our public services and who contribute towards their costs.

They aren’t all rich enough to pay for their own personal translator or digitally equipped enough to auto-translate NHS information documents into their own languages.

I don’t see commentators on the right arguing against hospitals in France or Spain finding translations for ill white British expats or embassies around the world employing translators to help British citizens who have found themselves in a spot of bother with the local law. I wonder why.

Of the almost one million people living with dementia in the UK, around 25,000 are from a black or ethnic minority background. This population is set to double to 50,000 by 2026, and grow to 172,000 by 2051.

This seven-fold increase compares to a two-fold increase in the general population, as quoted in a report by the All-Party Parliamentary Group on Dementia.

Dementia is a high-profile issue.

The family of actor Bruce Willis, diagnosed with frontotemporal dementia last year, is shattering preconceptions about the condition and caregiving. Recent studies suggest scientists are close to creating a blood test to predict dementia. And the late activist Wendy Mitchell, who died last month, advocated powerfully for awareness.

But black and ethnic minority communities are under-represented in dementia debate and action – despite facing a triple whammy of inequality related to the condition. They are considered to be at higher risk. Awareness and diagnosis rates are lower (some South Asian languages have no word for dementia). Culturally appropriate, faith-sensitive provision is scant. 

The disparity has revealed itself starkly to me as my extended family now includes two older relatives living with dementia – one is from a white British background, and one was born in India, but has lived in England since childhood (it was a surprise to find my South Asian relative reverting occasionally to their mother tongue, for example).

One reason dementia is rising in ethnic groups is, as a 2021 Alzheimer’s Society report states, some people who moved here during the 1950s and 1970s are reaching an age where dementia is more likely to develop.

Vascular dementia is also thought more to be common due to higher prevalence of risk factors such as diabetes, hypertension, and cardiovascular disease. Research by University College London and the London School of Hygiene and Tropical Medicine, suggests that black and South Asian patients survive for less time after diagnosis and die younger.

The inequality extends to carers, according to a Race Equality Foundation (REF) paper, which found they feel culturally obliged to provide support but are unwilling or unprepared. However, mainstream services assume families do not need external support.

Dr Sahdia Parveen, Associate Professor at the University of Bradford’s Centre for Applied Dementia Studies, who co-authored the REF paper, says: “On the family level, people from minority ethnic backgrounds have less awareness or knowledge of dementia and don't always recognise symptoms, which delays the process of seeking help. Dementia is often seen as being the same as 'old age’.”

At a community level, dementia is stigmatised, she says: “In South Asian communities there is a misconception that the person may have nazaar – evil eye – placed on them or the person is being punished by God. In African and Caribbean cultures, dementia is linked to witchcraft.”

Families might hide the diagnosis, which prevents access to support.

Challenges at a health systems level include diagnostic questions that rely on British history knowledge.

“We currently don't have diagnostic tools that are culturally sensitive and reliable for minority ethnic communities," Dr Parveen adds. "The cognitive tests have a western and education bias. There are also issues of lack of cultural sensitivity from health care professionals – racism – and services not being set up to meet the needs of diverse communities.”

Solutions, she says, include services working with community groups on awareness, and developing culturally appropriate cognitive tests, post-diagnostic services and diversity training for professionals.  

Dr Parveen co-led a collaborative project, The South Asian Dementia Pathway study, which created resources including culturally appropriate assessments. Recommendations for service commissioners and managers included information being given face-to-face and tailored support for families.

Mainstream professionals should consider the work of the Leeds-based Black and Minority Ethnic (BME) Dementia Service, run by health and wellbeing charity Touchstone. 

Launched 11 years ago and jointly commissioned by the local authority and NHS, it provides specialist support to people living with memory problems or a dementia diagnosis and their carers. Despite its tiny size (its support worker and administrative officer are both part-time), the service has helped more than 300 people since 2020, through self-referral or via other organisations, GPs or memory clinics.   

The BME Dementia Service. Photo: Ripaljeet Kaur

Ripaljeet Kaur, its service manager, says: “Our core aims are raising awareness of dementia, to enable early diagnosis, breaking down stigma as that creates hurdles for people to access mainstream services, and supporting people and carers to get a diagnosis. We also provide post-diagnostic support – the whole dementia journey.”

As well as awareness-raising talks in mother tongue in local faith and community settings, there is a walking group for carers and a weekly dementia cafe, Hamari Yaadain (“Our Memories”), supported by four volunteers.

The 20 café members do an hour of physical activity like yoga or games like carrom – which originated in India – or 'food bingo’, using pictures of vegetables found in Asian cuisine. The second hour is spent chatting over drinks and snacks.

The service is also the founder member of the 10-strong BME Dementia Forum, uniting local organisations involved in dementia support.

Kaur recently supported a woman with vascular dementia who had been discharged from the memory clinic with a dementia diagnosis. She and her husband had a general information leaflet but struggled as the condition progressed.

They came to the BME Dementia Service by word of mouth. Kaur’s assessment revealed that the husband did not understand dementia or how to cope with its symptoms. The couple had stopped socialising due to stigma and the husband had not sought help because he feared services were culturally inappropriate. He thought his wife was possessed as she would talk to herself about blood.  

Kaur did one-to-one sessions with the husband, provided written information in his mother tongue, explained the prevalence of dementia and the benefits of joining social groups. 

Kaur learned that, as a child, the wife had witnessed her father’s fatal accident and explained to the husband that the talk of blood was due to the return of repressed memories.

The couple joined the Hamari Yaadain café and Kaur arranged for someone who shared their cultural background to provide respite care so the husband could have a break. 

More people should benefit from this kind of support. 

While the Government’s brutal cuts to local authority funding and lack of investment in social care offer little hope for replication of the BME Dementia Service, much of its work relies on attitudinal change. 

Kaur says mainstream services can adapt at low cost: “Just be mindful and patient and show that compassion – you can still work with people from different backgrounds by acknowledging their cultural needs.”

A focus on the widening inequality in dementia care for people from ethnic minority backgrounds is vital, not only because the population is growing but because this group is struggling disproportionately in the cost of living crisis. 

A study funded by Alzheimer’s Society and the National Institute for Health and Care Research last year showed a fifth of social care users with dementia had cut their spending on support to save money – and this was especially true for those from non-white ethnic backgrounds.  

As Dr Sahdia Parveen says it is not “an issue we can ignore anymore”.

“The minority communities have 'caught up’ age wise with the population and have higher prevalence of dementia risk factors… a lot of effort has gone into understanding perceptions of dementia in minority communities and raising awareness. However families affected by dementia urgently need culturally competent dementia care.”

Without the creation of more inclusive dementia support, an overlooked but growing population is being failed.

Is the NHS really being privatised on the quiet, before enough of us realise it?

It remains a taxation-funded, largely publicly-provided, universal, free at the point of use service, notionally based on need not the ability to pay, in line with its founding principles. And you can’t buy shares in the NHS – a million miles away from the situation in our privatised utilities and public transport providers.

International health system comparisons and league tables have consistently shown that the NHS is a leader in terms of efficiency, cost, equity of access, not financially charging patients, and not damaging them financially by the cost of care or avoiding care due to fear of cost.

That said, the World Health Organisation defines privatisation as occurring “where non-government bodies become increasingly involved in the financing or provision of health care services”. Use that yardstick and the situation warrants further scrutiny.

Services such as dentistry, community pharmacy, and eye testing have been provided by the private sector for many years without considerable pushback (although the recent crisis in the provision of NHS dentistry and a contract that makes it unviable for dentists to deliver at any kind of scale has raised doubts about this).

Support services such as catering, car parking, cleaning, security and maintenance, and records storage have been outsourced for years – although not without concerns regarding their value for money, quality, competence, or comparison with traditional in-house provision (not to mention NHS frontline staff being fined for parking at their own workplace and companies profiting from patients or their families visiting hospital).

Legislation in recent decades has created an internal market with a 'purchaser-provider split’: the “any qualified provider” clause in Andrew Lansley’s 2012 Health and Care Act made it compulsory for the Government to put NHS contracts out to competitive tender. This has since been repealed with the creation of 42 "integrated care systems" and the Alternative Provider Medical Services Contract, enabling primary and community services to be bid for by non-NHS providers.

NHS trusts are also saddled with debts from the private finance initiative (PFI) for building and maintenance of facilities. In 2022, the Guardian found that 101 trusts owe £50 billion between them and several are spending more than 10% of their revenue on servicing PFI contracts. There are numerous ongoing disputes between NHS trusts and providers about the quality of the contractors’ work and plans when the contracts come to an end.

Despite all of this, respected health policy think tanks such as the King’s Fund have pointed out that notwithstanding the growth in clinical contracts being awarded to the private sector after the 2012 Act, they have often been of low value (with a total spend of only about 7 % of NHS expenditure).

Meanwhile, adult social care – including personal care at home or long-term care in residential and nursing homes – unlike the NHS, has long been rationed by highly restrictive eligibility assessment. It is far from universal and is also subject to means testing and personal payments. Cuts to local government funding, competing pressures on councils, repeated failures of government to provide social care funding solutions, and the crisis in the poorly paid social care workforce, have seen a growing gap between requests for support and provision.

Earlier this month, it was reported by the director of the Centre for Healthcare in the Public Interest that private equity funds and US health corporations were taking more than £1 billion in profit annually from their stakes in care homes for older people and homes for looked-after children. These facilities are currently essential to service provision and represent a stable opportunity for return on investment.

It was also reported that half of the UK's sexual assault referral centres were backed by private equity and that companies had made several millions in dividends during the past two years, not only from these centres but also from healthcare provision for people in custody and secure units.

Around one in three inpatient mental health beds, and the majority of addiction, drug and alcohol rehabilitation facilities, are now private sector provided. Local government cuts have also impacted capacity in such services.

This is despite a major evidence review this year in the Lancet, which found that research in the past 40 years had shown that an increasing aggregate of private sector provision has been linked with worse outcomes for patients. It concluded that the evidence for the benefits of privatisation was weak.

A review by the British Medical Journal last year of the literature on private equity investment had shown that a growing involvement of private equity in all healthcare settings was associated with higher and harmful costs to patients and “mixed to harmful” impacts on care quality.

The Guardian also reported this month that private hospitals are now carrying out 10% of all elective NHS operations (a record high). The biggest areas among the 1.67 million NHS-funded operations carried out in the private sector were in routine orthopaedic surgery, eye surgery and dermatology – a 29% increase in the numbers reported in 2019.

The Independent Health Provider Network praised the increasing access and choice for patients as helping to reduce waiting lists (as part of the NHS referral to treatment scheme).

The Centre for Healthcare in the Public Interest has also reported that cataract operations being conducted in the private sector are also being clinically coded as of higher complexity than those in the NHS – with more complex codes attracting a higher price.

Meanwhile, between 2019 and 2022, the proportion of British citizens taking out private medical insurance nearly doubled from 12% to 22%, bringing the UK more in line with other industrialised nations from a historic low uptake.

Again, the insurance industry is pleased with this progress. Last year, both Aviva and Axa celebrated the opportunities this provided and the growth in their market share.

We know that more than one third of patients having private sector surgery are now paying out of their own pocket, even without any personal insurance policy, and that this too has seen a steep rise in recent years.

The pandemic caused a sharp rise in privatisation tendencies.

The National Audit Office published a series of reports on pandemic procurement, showing tens of billions of pounds squandered on personal protective equipment – much of it unusable, on test and trace, apps, ventilators, and consultancy contracts often from unqualified and unsuitable commercial organisations with insufficient scrutiny and transparency and poor value for money. 

As Byline Times has reported on extensively, some of the individuals and organisations who won contracts had links to the Conservative Party or were known donors, with a 'VIP lane’ created to facilitate this.

The private hospital sector was also given an additional £2 billion of government money between 2020 and 2023 to help with pandemic elective care, but its activity continued to be dominated by private work.

There is also the issue reported by Byline Times of several MPs or peers holding shares in private healthcare providers, or private equity firms who fund them and lobbying on their behalf.

The private healthcare sector employs and poaches staff trained by the NHS and bears none of the training costs itself; selectively cherry-picking low-risk elective procedures it can monetise and avoiding acute, urgent or complex care – including the provision of emergency departments, intensive care, or inpatient care for sick older people.

It evades the degree of regulatory scrutiny the NHS must rightly meet. And it ships thousands of patients each year back to NHS hospitals when they develop acute complications that private hospitals are not staffed or equipped to deal with.

Analyses by the King’s Fund, the Nuffield Trust, Health Foundation, and even global consulting giants McKinsey, have shown that there is no inherent advantage in an insurance-based system with greater marketisation and profit motive compared to predominantly tax-based and publicly-provided systems.

Nor is it true that those systems do not exist outside of the NHS. Versions can be seen in Italy, Spain, Portugal, New Zealand, Canadian Provinces, Malta and Scandinavia – albeit often with less centralised political leadership and control.

Data from the British Social Attitudes Survey, the Health Foundation and Ipsos Mori has shown no public appetite, and no political mandate, for a change in the current tax-funded and notionally publicly-provided NHS model or its founding principles.

The same goes for support for an European-style insurance-based models (repeatedly touted by small state lobbyists from the Institute of Economic Affairs, the Adam Smith Institute, or columnists in right-wing publications who ignore the presence of perfectly decent, publicly-funded, models in their selected examples).   

Sadly, a major reason why so many more people are now feeling they must take out private insurance or use their savings to pay for treatment or consultations – and why the NHS itself is placing ever-growing volumes of business with the private sector – is the years of declining performance since 2010.

I believe the majority of the public wants the existing NHS model to work like it used to, in terms of access, waiting times, staffing, patient, and staff satisfaction – rather than a complex market involving multiple payers and competitive providers.

With a Labour government likely after the next general election, it would be good to see it openly defending the NHS’ founding principles – and to stop and reverse the expansion of the profit motive and markets in the service. I have seen no such commitments yet.

Authorities in Scotland are facing increasing criticism from Long COVID sufferers, including a landmark legal case challenging the failure of authorities to provide adequate care.

In December, Thompsons Scotland solicitors formally notified NHS Grampian on behalf of the family of Anna, a child suffering with Long COVID, of their intention to pursue legal action against the health board. In January, it issued a formal letter informing NHS Grampian of the decision to initiate legal proceedings for damages stemming from medical negligence.

UK Long COVID charities have also issued a joint statement criticising a guidance update by the Scottish Government on the NHS Inform website, via the official @scotgovhealth X channel (formerly Twitter).

The groups Long COVID Kids, Long COVID Scotland, Long COVID SOS, Long COVID Support and Long COVID Physio argue they are unable to support the guidance in its current form as it downplays “the challenges encountered by individuals grappling with the persistent effects of SARS-CoV-2” causing “widespread distress within the Scottish, UK, and global Long COVID community” and leaving “many feeling invalidated or gaslit in their ongoing struggle to receive fundamental care”.

The guidance update demonstrates some of the issues raised by Long COVID Kids Scotland in its opening statement as a core participant to the COVID inquiry's module on Scotland's pandemic response. It said that "the absence of high quality and biomedical paediatric research" had led to "poor outcomes for children and young people”.

The children represented have struggled to have their conditions recognised. Those who have, have been offered cognitive behavioural therapy (CBT) and graded exercise therapy (GET).

CBT may be supportive but it does not address the underlying pathology of what is a physical condition. GET is a programme of gradually increasing physical activity levels used as a treatment for ME and chronic fatigue syndrome (which have similarities with the symptoms experienced by many with Long COVID).

However, GET is not recommended as a treatment for ME or chronic fatigue syndrome or Long COVID in the current NICE guidelines, and there is evidence that GET can worsen conditions.

Anna has had Long COVID since March 2020. After almost four years, her family feels they have exhausted all avenues within NHS Grampian, having faced “medical gaslighting, dismissal and consistently been denied NHS care”.

Anna’s family told Byline Times how when they highlighted NICE guidelines to a physiotherapist after Anna had been put through a 30-minute gym session, they were told “if you won’t accept GET then there is nothing I can do with you”.

Their legal letter to NHS Grampian states that the health board also exhibited a lack of seriousness in addressing their formal complaint, attempting to close it without resolution on four separate occasions.

The health board is accused of denying necessary treatment and care, resulting in medical negligence causing additional harm and trauma to Anna and her family, which has incurred substantial expenses on medical care and treatment within the private healthcare sector.

The goals of the legal action are to hold NHS Grampian accountable for its failures and inaction by way of a formal apology and for the Scottish Government to promptly overhaul its approach by introducing improved clinical protocols for children and young people with Long COVID, including implementing comprehensive training and upskilling initiatives for paediatric clinicians.

Anna's family feels progress in care is “moving at a glacial pace”, while Scotland's children continue to be dismissed and ignored in a “callous manner”.

This sentiment is echoed in the statement from Long COVID charities in relation to the guidance released on the NHS Inform website.

The statement expresses concerns regarding the failure to include “references to cardiology, neurology, and immunology, despite documented symptoms” which “may inadvertently imply Long COVID is primarily psychosomatic”. This is an implication that contradicts published research with evidence of cardiovascular, neurological, and immunological involvement.

The statement also argues that the guidance disregards treatment for symptom management by “conveying a potentially harmful message” on the use of GET without proper screening for post-exertional malaise and/or post-exertional symptom exacerbation. The charities’ statement argues that “people living with other life-altering conditions are not typically prescribed Pilates or gardening as treatments”.

The Scottish COVID Inquiry has heard that, as of May 2022, it was believed there were more than 10,000 children in Scotland suffering from Long COVID which has caused neurological, musculoskeletal, gastrointestinal, and cardiovascular symptoms, and serious cognitive impairment.

The Scottish Government has not explained how £10 million of support funding was spent, and it does not appear that Long COVID cases are being tracked. Unlike in England, Scotland did not establish dedicated paediatric Long COVID hubs, (although concerns have been raised south of the border regarding some of the English hubs).

The inquiry has heard of a lack of flexibility in the education system to provide for students with unpredictable attendance due to the waxing and waning of symptoms that many with Long COVID experience.

The financial impact to families, particularly when the child is unable to obtain a diagnosis, was also explained to the inquiry. Families face loss of earnings due to caring duties while also being unable to access social care services and financial support for items like mobility aids.

This first legal case of its kind in the UK will be followed with keen interest by the thousands of people in similar situations. According to the Office for National Statistics, there are currently more than 60,000 children with Long COVID in the UK.

Authorities have yet to respond to the legal letter.