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.

"I feel like I’m going to die". These were the haunting words of 18-year-old Millie McAinsh, wrongly sectioned and left without care in an NHS hospital.

Before autumn 2019, Millie was a healthy teenager. She loved the performing arts and was excited to attend sixth form and go to university. Then, what started out as a simple virus, became Myalgic Encephalomyletis (ME), and everything changed.

ME – sometimes erroneously referred to as Chronic Fatigue Syndrome – is a multi-system post-viral illness that leaves 25% of its sufferers housebound or bedbound, and 75% unable to work. Its primary symptom is post-exertional malaise – a dramatic increase in neurological and immune symptoms following exertion.

Over the next four years, Millie went from being the “spontaneous and adventurous” person her family knew to being almost entirely bedridden and relying on them for her basic needs.

By last December, Millie was too unwell to feed herself.

In January, she was subsisting on a mainly liquid diet taken through a straw. When this became too difficult, she was admitted to the Royal Lancaster Infirmary.

Millie's family hoped it would be a brief stay, simply to have a feeding tube fitted that would allow her adequate nutrition, but she was instead placed under a deprivation of liberty safeguarding (DOLS) order. She was subsequently sectioned under the Mental Health Act. That decision was overturned by an emergency tribunal 12 days later. 

Her mother and primary carer, Lucy Montgomery, has been banned from visiting – leaving Millie at the mercy of tests that she says are causing her daughter to rapidly deteriorate.

“Being banned from the hospital after caring 24/7 at home for Millie was extremely distressing and difficult,” Montgomery told Byline Times. “She trusted and relied on me to help advocate for her needs, and the new environment in hospital was challenging enough without having her main carer and support taken away.”

Due to the severity of her condition, Millie is mostly non-verbal. But during a traumatic procedure in which a tube was wrongly inserted into her lung, she was heard to beg: “Take it [the tube] out. I don’t consent to being touched… I want the tummy [feeding] tube… I want my mummy to decide my medical decisions… I want to go home.”

At the time of writing, no such tube has been fitted, although there are tentative plans for a procedure next week.

Millie in hospital, where her family says her condition has rapidly declined. Photo: Millie’s family

“Millie has declined massively in hospital,” a member of her family who wished to remain anonymous said. “She is now unable to leave her bed at all and has recently said many times that she thinks she is dying and will not live another week.”

This is not an unreasonable fear.  

Despite an estimated 1.2 million people in the UK living with post-viral disease, there is a lack of knowledge within the medical profession regarding how to treat these patients.

In particular, a gap in the care pathway for severe ME patients means that many risk death or the worsening of their condition if they seek hospital care.

In 2021, 27-year-old Maeve Boothby O’Neill died after she became too unwell to take in food and water due to the severity of her ME. She was discharged three times when an NHS hospital allegedly mishandled her care and she died at home in Exeter. 

An inquest into her death is ongoing, but the pre-inquest hearing last November heard written evidence from the medical director of her local hospital trust that there was a dire lack of NHS services for patients with severe ME.

“The trust was not commissioned, and therefore not resourced, to provide inpatient treatment for severe ME,” Dr Anthony Hemsely wrote. “[And there was] no opportunity to refer Maeve to a specialist inpatient centre.

“There is a lack of commissioned specialist services for severe ME, both locally, regionally, and nationally. In order to rectify this situation, action is required at the highest level.”

The history of ME is long and fraught.

For many years, it was thought to be a psychological phenomenon, but a growing body of biomedical research studies have suggested that this is incorrect. While the National Institute for Health and Care Excellence (NICE) guidelines for ME were updated to reflect this in 2021, the change has been slow to reach general medical practice.

Many doctors and medical professionals still believe that ME is predominantly a psychological or behavioural problem, rather than an illness that can cause death – like those of 21-year-old Merryn Crofts in 2017, and 32-year-old Kara Jane last year. 

Millie’s family are now facing the same struggle to access appropriate care and say they are “emotionally and mentally exhausted".

“The whole experience is a roller-coaster of awful emotions," they said. "This has permanently changed us all as people."

While the inquest into Maeve’s death is scheduled for July, campaigners have written an open letter to the Health and Social Care Secretary, asking for the urgent creation of an NHS protocol for patients with severe ME.

Millie’s family have launched a petition urging the medical team at Royal Lancaster Infirmary to abide by the NICE guidelines, fit Millie with an appropriate feeding tube, and allow her to come home.

Jane McNicholas, chief medical officer at University Hospitals Morecambe Bay NHS Trust, told Byline Times: “Due to the complexities of the case, it would be inappropriate for us to comment except to say that our teams are working hard with relevant specialists to provide the best possible care.”

Questions have been raised around court claims of evidence spoliation and recoverability in a high-profile NHS whistleblowing case during which tens of thousands of emails were deleted.

NHS doctor Chris Day has won the right to challenge a tribunal decision about information governance in NHS hospital trusts and the scrutiny applied to attempted evidence destruction at employment tribunals.

Day exposed acute understaffing at a south London intensive care unit linked to two patient deaths in 2013. His decade-long legal campaign has since revealed a lack of statutory whistleblowing protections for nearly 50,000 doctors below consultant level in England.

An appeal tribunal in February refused Day the right to challenge key aspects of an earlier ruling that cleared Lewisham and Greenwich NHS Trust (LGT) of concealing evidence and perverting the course of justice when one of the trust’s directors deleted up to 90,000 emails during a tribunal hearing in July 2022.

That hearing heard that LGT communications director, David Cocke, had attempted to destroy tens of thousands of emails and other electronic archives that were potentially critical to the case.

An unsigned witness statement submitted to the tribunal on behalf of Cocke claimed that the information had been “permanently” deleted. LGT has since claimed that the cache was recovered and submitted to the tribunal, something Day disputes.

Appeal tribunal judge Andrew Burns described Cocke’s conduct during the 2022 hearing as “extraordinary”.

Cocke’s actions followed LGT’s late disclosure of more than 200 pages of documents and, the tribunal heard, suggested that the trust’s CEO, Ben Travis, had given “inaccurate” and potentially misleading evidence to the tribunal days earlier.

Day’s barrister, Andrew Allen, told an employment appeal tribunal in February that Cocke went "in the middle of the night and destroyed them... because he was in a panic".

According to Allen, Cocke "had been observing the case and realised that key evidence had not been disclosed".

That Cocke "destroyed documentation potentially relevant to the litigation,” Allen argued, “is intimately tied up with" Day's concealment and detriment claims. 

He added that there was a “failure to make findings” at the 2022 tribunal on the attempted destruction of electronic evidence.

Burns noted in his judgment that “although the employment tribunal has mentioned that it can draw adverse inferences… from the respondent’s deletion of documents, it doesn’t seem to have turned its mind to doing so.” He described Day’s patient safety disclosures as been of “the utmost importance”.

Allen also raised questions about LGT’s destruction of electronic records prior to the 2022 hearing.

"Documents had not been sought from key personnel,” he said, including from Janet Lynch – an ex-workforce and education director at the trust who, as its instructing client, had been responsible for advising the trust’s solicitors up until late 2018. “And key documents [including Lynch’s emails] were destroyed after she left the trust.”

Five trust directors’ emails – Travis, Cocke, Lynch, and two doctors involved with Day’s whistleblowing case – were either said to have been deleted or unavailable during the key dates being examined by the 2022 tribunal.

The hearing considered whether the trust had caused Day detriment linked to his whistleblowing. His appeal will examine whether public statements the trust issued about the settlement of a previous hearing did so.

The directors whose emails were unavailable at the 2022 tribunal are understood to have been involved in producing the statements, which drew criticism from the Care Quality Commission regulator.

The appeal hearing will not consider Day’s allegations of concealment. He has asked the tribunal to review its decision and applied for a further ground to be added.

Martin Nikel, an expert in e-discovery who heads Thomas Murray's cyber risk advisory e-discovery and litigation support practice, told Byline Times that a number of key questions regarding the emails’ status had not been answered by the tribunal or LGT.

"It's very irregular for a director of communications to have the ability to permanently delete emails without administrative privileges,” he said.

“When it's said that he deleted 90,000 emails, that's potentially a big task to undertake. In these scenarios, an end user without significant knowledge and access rights, would leave three potential sources of email, which could be explored to see if the email can be recovered.”

The NHSMail system, which LGT has confirmed was in use in 2022, usually retains emails for a minimum of 30 days and up to two years, Nikel said. A forensic discovery request or search of the Microsoft 365 environment could also establish the presence of the emails.

Nikel added that the way LGT board members were asked to provide evidence for the 2022 hearing was “unreliable” and explained that “it appears that board members were instructed to simply search their own emails".

“This is an obviously unreliable way to perform any collection of evidence in a neutral way," he said. "The NHS has processes in place for such situations – and organisations like the Counter Fraud Authority – that I am sure could provide better evidence-handling processes in such high-profile matters.

“Legal advisors could appoint external forensic experts, which if nothing else, would help with perception in future situations such as these.”

Robert Maddox, an employment lawyer with Doyle Clayton, told Byline Times that employment tribunals apply the same evidence to disclosure and preservation rules as the civil courts, but don't have “the same level of rigorous procedure that goes with a High Court matter”.

“For example, in the civil courts, a party can be obliged to complete a disclosure certificate of compliance confirming where they’ve searched, what they’ve searched for, confirming they’ve disclosed all relevant documents," he said.

“That’s not necessarily done in the tribunal. There is an obligation on parties to perform a reasonable search and to disclose any documents that are relevant, irrespective of whether they are favourable or adverse for a party’s case.

“But there certainly is an obligation to preserve documents and tribunals will look unfavourably on documents having been lost or destroyed.”

Maddox added that, although it is possible to enlist an IT expert to assess lost or deleted evidence, tribunals can take a party’s statements at face value.

It is more common for a party to make submissions on adverse inferences that can be drawn from missing, lost or deleted evidence, he said, rather than incur costs or risk further delays.

A LGT spokesperson acknowledged the outcome of the appeal hearing but declined to comment further "as legal proceedings are ongoing”.

LGT declined to say if Cocke still works at the trust and whether it paid his legal costs after he enlisted the services of a separate firm during the 2022 hearing. Travis remains the trust CEO.

Danger to patients and conflicts of interest as government continues to push for expanded use of ‘associate’ roles – with help from the Royal College of Physicians

A survey by the Doctors’ Association UK (DAUK) has revealed ‘deeply disturbing’ ‘scope creep’ in which – as warned by the British Medical Association (BMA) and others – ‘physician associates’ (PAs), who are not qualified as physicians, are being used and acting as doctors.

A statement by the group warns that PA are not only overstepping the boundaries in which they are meant to operate, but also being used by NHS trusts and health companies to fill positions that require fully-qualified doctors:

PAs are overstepping boundaries, putting patient safety at risk, and impacting doctors’ training. This is shocking in itself, but made far worse by recent events at the Royal College of Physicians… Doctors at Torbay report PAs being used as “middle grades” – clear scope creep.

According to a doctor recruitment agency:

Doctors in speciality training programmes are known as Middle Grade doctors. Junior Middle Grade doctors are trainees who have completed their foundation training and are now in the early years of their speciality training. They are: ST1/ST2: ST stands for Specialty Training.

According to survey responses from doctors at Torbay and South Devon NHS Trust, as well as being used as ‘middle grade’ doctors and putting patients at risk by acting outside their competencies, PAs:

• work without adequate supervision
• consent inappropriately
• participate in unsafe clinical activity
• treated severe infective colitis with antibiotics and steroids simultaneously

According to NHS Scotland, steroids “shouldn’t be used if you have an ongoing widespread infection. This is because they could make it more severe.”

The DAUK also linked the survey results to this week’s fiasco at the Royal College of Physicians (RCP), where attendees of an extraordinary general meeting (EGM) regarding concerns about PAs linked the behaviour of the RCP’s panel, which was accused of ‘contempt’, shutting down discussion and even filibustering, to the RCP’s financial conflict of interest in the millions of pounds it reportedly makes from administering PA examinations.

The RCP is hiding their full survey data from FRCP and Council until after the EGM vote. This lack of transparency is unacceptable…

The RCP Registrar, who sets RCP professional standards, works at this Trust. (Important note: there is no indication she was involved in this case [of steroid/antibiotic administration].)

Doctors at Torbay report PAs being used as “middle grades” – clear scope creep. Yet the Registrar, whose job is to “create consensus” & uphold standards, has been involved in withholding critical data that potentially sways the EGM vote. This is not leadership.

The Registrar’s own job description emphasises “accountability for clinical and professional affairs” and “…setting and maintaining professional standards.” How can the Registrar fulfil these duties, ensuring patient safety and upholding standards, when those very standards are being violated in their own Trust? This is an untenable conflict of interest.

In our view, the Registrar has failed in their core responsibility for transparency and integrity of RCP decision-making. We call for their resignation to restore trust in the RCP. The RCP’s position on PAs is currently compromised.

The statement concludes with a call on all voting members of the RCP to vote to support all the motions tabled at the EGM calling for a rethink on the issue of PAs:

Lastly, we are asking that Fellows vote in favour of all five motions as presented, to ensure that a safe revaluation of the PA role can be conducted to ensure patient safety and to ensure continued viable training of the medical profession moving forward.

The use of PAs, which is considered by nine out of ten doctors to be dangerous to patients and confuses many patients, who do not realise that they have not been seen and treated by a fully-qualified medic, is being pushed by the government as a way of ‘downskilling’ the NHS, reducing costs and allowing increased profits for private providers, under the guise of the so-called ‘NHS Workforce Plan’ as part of the ‘Integrated Care Systems’ (ICS) project.

ICS, formerly called ‘Accountable Care Organisations’ (ACOs) after the US system it copied, were renamed after awareness began to spread that ACOs were a system for withholding care from patients and that care providers were incentivised to cut care because they receive a share of the ‘savings’. The system remained the same, but the rebranding disguised the reality.

The government used a ‘statutory instrument’ (SI) to pass these changes, avoiding proper parliamentary scrutiny, but both the Tories and Keir Starmer’s Labour support these and other measures to cheapen the NHS for private involvement and only independent MP Claudia Webbe spoke against them during the brief SI debate. Green peer Natalie Bennett’s motion in the House of Lords to attempt to kill the instrument was defeated by the Tories with the help of Labour peers.

At least two people have already died avoidably because of misdiagnosis by PAs. Emily Chesterton, 30, who didn’t realise she wasn’t seeing a doctor, was treated for a calf strain when she had a deep vein thrombosis that led to a lethal embolism. Ben Peters, 25, was sent home from A&E with a ‘panic attack’ that was really a serious heart condition. A doctor’s Twitter/X thread includes details of others said to have died because of issues around PAs.

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