In a first-of-its-kind study, researchers at RCSI University of Medicine and Health Sciences have found that a school-based screen for mental health problems, combined with a referral system, can be effective at improving and protecting the mental health of adolescents.

The research, published in BMC Public Health, is the first study to examine the impact of school-based interventions on preventing psychotic experiences, an early indicator of developing mental disorders in children and adolescents.

Of the interventions tested, one consisting of a universal screener and selective intervention was found to both reduce the rates of, and prevent, psychotic experiences at 12-month follow up.

Prof Mary Cannon, Professor of Psychiatric Epidemiology and Youth Mental Health, Department of Psychiatry, RCSI, commented: “Prevention has two key objectives; to reduce the symptoms of mental health disorders, and prevent new incidence of symptoms. This study demonstrates that school-based interventions have the potential to be effective at both key aims of prevention, making a positive impact on public mental health.”

Lead author and RCSI PhD student, Ms Lorna Staines, commented: “Psychotic experiences are particularly common in the adolescent population and are associated with a four-fold increased risk for psychotic disorder, and a three-fold increased risk for any mental disorder. This study has for the first time identified school-based programmes as an effective route to prevent psychotic experiences.”

The lead authors of this study are supported through funding provided by the European Research Council Consolidator Award (iHEAR). The SEYLE project was supported through Coordination Theme 1 (Health) of the European Union Seventh Framework Programme. Further support was provided by a Wellcome Trust Innovations Award, a research grant from Science Foundation Ireland (SFI), the European Regional Development Fund and FutureNeuro industry partners.

Concerns over the “financial challenges” facing the health service this year should be included in the new HSE National Service Plan 2023 (NSP 2023), an Executive meeting heard in November.

At the 8 November meeting of the HSE performance and delivery committee, the second draft of the NSP 2023 was discussed.

Committee members “expressed concern on the financial challenges outlined” by the Chief Strategy Officer Mr Dean Sullivan and the Interim Chief Financial Officer Ms Mairead Dolan who both spoke at the meeting, minutes state.

The committee “recommended the financial challenges are specifically included as risks and issues within NSP 2023”.

According to minutes, Ms Dolan told the meeting that “the NSP identifies a number of areas of risk where it has not been possible to provide for financially in 2023 as these areas collectively are beyond the normal level of financial risk that is managed in any given year, and that each of these areas will require careful monitoring and management during 2023 by HSE and the Department of Health.”

In relation to recruitment, Mr Sullivan told the meeting that the “risks that were noted in NSP 2022, related to the domestic and international market supply, Covid-19 environment and an increase in turnover, continue to exist as we enter into 2023”.

The “cost of living” was also highlighted as a challenge for recruitment at the meeting. 

As of 7 February, the new NSP has yet to be published. A HSE spokesperson told the Medical Independent that “the Department of Health and the Minister have shared observations on the NSP submitted by the HSE”.

“The HSE is now in a process of reviewing these observations and updating the service plan in the light of them. A further version will then be submitted to the Minister and his Department and we would hope to publish it shortly thereafter.”

Last year, the 2022 service plan was published at the beginning of March.

The US’s leading advocate for healthcare reform is in pole position in Congress to advance his agenda. Bette Browne reports

Senator Bernie Sanders, a former US presidential hopeful and self-described democratic socialist, has won the leadership of a powerful congressional panel. He plans to use it to champion access to affordable healthcare for all Americans.

Senator Sanders, who votes with the Democratic party in Congress, but is an independent senator representing Vermont, shot to international prominence during two failed bids to become the Democratic party nominee in the 2016 and 2020 US presidential elections.

In both campaigns, he denounced the deepening economic and social divide between rich and poor in America and promised to create a single-payer national health insurance programme, which he dubbed Medicare-for-All. At present, the popular government-supported Medicare insurance programme covers only older persons.

Radical

Senator Sanders’ rallies and his reformist agenda drew huge crowds. In 2016, he came close to defeating Ms Hillary Clinton as the party’s presidential candidate.

In his second bid for the Democratic nomination in 2020, the then 79-year-old Senator seemed to have lost little of his passion for radical change, especially in healthcare. In a speech on 17 July 2019, televised by the C-Span network, he declared before a cheering crowd that “doctors and nurses and other healthcare professionals understand we cannot continue with the current dysfunctional healthcare system”.

“They increasingly understand healthcare is a human right, not a privilege,” Senator Sanders added. “Today we come together to end the embarrassment of America being the only major country on earth not to guarantee healthcare to every man, woman, and child. We will end the embarrassment.”

He went on to denounce the fact that health insurance was unaffordable to millions of Americans.

“It is not acceptable to me nor to the American people that some 87 million Americans are either uninsured or are underinsured. It is not acceptable to me that we end up spending almost twice as much per capita on healthcare as do the people of any other nation, while at the same time, our life expectancy continues to go down and our healthcare outcomes lag behind other major countries.

“Under the dysfunctional healthcare system we have today, 30,000 Americans every year are dying because they don’t go to the doctor when they should because they lack health insurance or they are underinsured with high deductibles or high co-payments. This is the United States of America (and) 30,000 people a year should not be dying because they lack adequate health insurance. I am sick and tired of seeing working-class families and small businesses pay far more than they can afford to pay and 530,000 Americans declare bankruptcy each and every year because they cannot pay off the outrageous cost of a medical emergency or hospital stay.

“They shouldn’t be driven into financial ruin because someone in the family becomes ill. People shouldn’t be forced into financial ruin or bankruptcy because they cannot face the unbelievably high cost of prescription drugs. Can you believe that in America today people are dying because of the high cost of prescription drugs.”

The more he denounced the system the more popular his rallies became, especially when he took aim at what he called the “greed” of pharmaceutical companies. “We will no longer accept the greed of the pharmaceutical industry,” he declared, citing the fact that in Canada insulin could be purchased for one-tenth the price that patients were charged in the United States.

“So today we tell the pharmaceutical industry their greed is going to end. We are tired of getting ripped off. Nobody thinks that the system in which 80 million people or more have no health insurance or are underinsured is a good system. Nobody I know thinks that when Americans are paying the highest prices for the world for prescription drugs that that is a good system.

“This has nothing to do with healthcare, but it has everything to do with the greed and the process of the healthcare industry with the medical equipment supplier, Wall Street entities, that make tens and tens of billions of dollars every single year while ignoring and turning their backs on the needs of the American people. It’s about whether we maintain a dysfunctional system that allows the big drug and healthcare companies to make over $100 billion in profit last year. All the while one-out-of-five Americans cannot afford to get the prescription drugs that their doctors prescribed. The function of a rational healthcare system is to provide healthcare to all in a cost-effective way, not to make billions in profits from the insurance companies.”

His Medicare-for-All insurance plan remained popular among a majority of Americans, especially as the Covid-19 crisis began to decimate the country and millions of unemployed people started to lose their employee-based health insurance due to the economic fallout of the pandemic. In a Hill-Harris X-poll during the pandemic, for example, 69 per cent of registered voters supported providing Medicare to every citizen.

In many ways, Senator Sanders was a new phenomenon in a country where radical and progressive voices are few and far between in politics. Because of this, Senator Sanders was variously dubbed a firebrand, radical, socialist, or communist, mostly by Republicans, but sometimes by centrist or conservative Democrats.

Many in the Democratic party felt in 2020, much as they had in 2016, that Senator Sanders’ agenda and style would be far too radical for voters. Findings in a poll in February 2020 by NPR/PBS/Marist backed up the idea that the socialist label could hurt him if he became the Democratic party’s candidate in its battle to deny President Trump a second term.

Soon support increased for his rival for the party’s nomination, the more moderate President Joe Biden. In March 2020 a CNN poll found 52 per cent of Democratic party supporters wanted to see President Biden win the nomination, while 36 per cent said they would rather see Senator Sanders win.

While Senator Sanders pushed for universal healthcare by expanding the government’s Medicare insurance programme to cover all Americans, President Biden favoured more incremental steps. He wanted to build on the 2010 Affordable Care Act, which he had helped President Barack Obama to secure in Congress. Now President Biden wanted to beef it up by expanding the number of Americans getting access to affordable health insurance.

The same CNN poll in March 2020 also showed that Democratic voters were split between Senator Sanders and President Biden on who would best handle healthcare issues, with 46 per cent saying Senator Sanders would do a better job and 43 per cent favouring President Biden.

In the end, President Biden won the Democratic nomination and went on to defeat President Trump in November 2020. But Senator Sanders, born in 1941 in Brooklyn and the son of a Polish immigrant, did not fade quietly into the background. On the contrary, he kept pushing for fundamental changes in healthcare.

Today we come together
to end the embarrassment
of America being the only
major country on earth not
to guarantee healthcare to
every man, woman, and child

Healthcare legislation

Senator Sanders remained an influential force within progressive politics and played a key role in moving the policies of the Democratic party to the left. President Biden relied closely on the Senator to push a $1.9 trillion Covid-19 relief package through Congress in the early months of his presidency. Senator Sanders, by then, was Chair of the Senate budget committee and the Senate passed a budget resolution authored by Sanders’ committee. This paved the way for the relief legislation to win approval in March 2021, despite not getting a single Republican vote. It contained much of what Senator Sanders wanted for American families hit by Covid, including: $1,400 (€1,300) stimulus cheques for millions of Americans; $350 billion (€323 billion) in aid to state and local governments; and $14 billion (€13 billion) for Covid vaccine distribution. It expanded eligibility to purchase health insurance to people of all incomes under Obama’s Affordable Care Act. It earmarked $64 billion (€65 billion) to help 13 million people to pay premiums over the next three years for private health insurance under the Act. It also capped prescription drug costs at $2,000 (€1,800) annually for recipients of the Medicare programme for older persons. In addition, they would pay no more than $35 (€32) monthly for insulin, which can cost families in the US hundreds of dollars.

“We pay more for prescription drugs than any other advanced nation in the world and there’s no good reason for it. For years, many of us have been trying to fix this problem, but for years Big Pharma has stood in the way. Not this year,” President Biden declared when signing the legislation. “This year, the American people won and Big Pharma lost.” 

Senator Sanders must have been pleased. It could have been a speech right out of his playbook.

But the Senator was less happy a year later when another major piece of legislation pushed by President Biden was passed in August 2022. Senator Sanders believed this was not ambitious enough on healthcare. He had proposed a number of amendments that would have extended a childcare tax credit, provided dental and vision care to some Medicare recipients and capped the cost of prescription drugs, but each of his amendments were defeated. Despite this, however, Senator Sanders decided ultimately to vote for the Bill, which passed dramatically in a 51-50 tally, with Vice-President Kamala Harris casting the tie-breaking vote.

I want to work with
Republicans on issues where
we can make progress

Health, education, labour, and pensions committee

In many ways, it was a turning point for Senator Sanders. His politics was becoming more pragmatic and such pragmatism could serve in pushing his agenda as the new leader of the Senate’s health, education, labour, and pensions committee (HELP). Leading the panel gives him a powerful platform from which to focus on reducing the cost of prescription drugs, income inequality, and student and medical debt.

His health committee has sweeping jurisdiction over America’s public health agencies, the Food and Drug Administration and other aspects of federal health policy. Senator Sanders may also take on issues, such as the health impacts of climate change.

But he won’t have it all his own way. He will have to try to win Republican support and even the backing of some Democrats who regard some of his policies as too far to the left of the party. After the last congressional elections in November 2022, however, centrist Democrats, such as Senator Jo Manchin of West Virginia, do not hold as much power over the party’s agenda. A two-seat majority margin will give Sector Sanders more breathing room to push for passage of legislation out of the committee into the full Senate, where previously it had been a 50-50 split between Democrats and Republicans.

But before legislation goes to the President for signing it must be passed by both Houses of Congress, so it will be a different story in the House of Representatives, where Republicans now hold the majority. Indeed, the new Republican leader in the House, Speaker Kevin McCarthy, has already said Republicans will seek to roll back key provisions of the Democrats’ landmark climate and healthcare bill that was passed in August last year.

Senator Sanders will also face strong opposition in the halls of Congress from powerful lobbyists for pharmaceutical companies and others in the industry. “The prospects of a Sanders-led HELP committee are refreshing and exciting,” Mr Craig Holman of the consumer rights group Public Citizen told Politico. “The Chairman will give everyone their due, including lobbyists representing the public’s interest, without being swayed by campaign cash. Sanders’ new leadership position will help build some equity between the influence of the haves and have-nots.”

While focusing on ways to advocate for his Medicare-for-All plan, Senator Sanders also plans to move ahead aggressively to tackle the high cost of prescription drugs. In an interview with the Washington Post in January, he said he would focus particularly on lowering prescription drug prices, expanding primary care, bolstering the health workforce, and beefing up rural healthcare.

In the end, Senator Sanders’ pragmatism may see him working towards incremental gains that could become law rather than overtly advocating for his ambitious Medicare-for-All plan. He admitted as much in an interview with Politico in December 2022, before taking up his post. “I’m going to be walking a tightrope,” he said. “I want to work with Republicans on issues where we can make progress. In other areas, they’re not going to support me. And I’m not going to give up on those issues. There are some issues that will have zero Republican support that I will fight for,” he added.

Yet his record also shows he has the capacity to bring Republicans along with him. In 2014, as veterans affairs committee Chair, he negotiated a landmark deal with the late Republican Senator John McCain to expand healthcare access for veterans. “He’ll be a Chairman who not only is putting the spotlight on issues he cares about, but also will do a lot of good bipartisan work,” Democratic Senator Bob Casey told Politico. “His record indicates that.”

In the meantime, Senator Sanders is also said to be contemplating another bid to become a presidential candidate in next year’s race for the White House. However, he previously told CNN he would not do so if President Biden decided to run for a second term. “I think Biden will probably run again, and if he runs again, I will support him,” Senator Sanders said. In 2024, President Biden will be 81 and Senator Sanders will be 83.

Polls show many voters do not want to see President Biden run for another term. A CNN poll conducted in December found 59 per cent of registered Democrats and Democratic-leaning independents would like to see someone other than President Biden as the party’s 2024 nominee. So if Senator Sanders notches up some key victories during his term on the healthcare panel it could boost his chances of launching a third White House bid.­

The slow and difficult process in implementing the HSE’s e-health agenda recently made the headlines with the resignation of Director of Digital Transformation and Open Innovation Mr Martin Curley. Speaking to RTÉ’s Drivetime following his resignation, Mr Curley said the HSE was not fit-for-purpose and was extremely resistant to change.

The challenges in reforming the health service’s outdated IT infrastructure were the subject of a joint Oireachtas committee on health meeting on 25 January. Much of the debate focused on the failure to establish a national electronic healthcare record (EHR).

In response to questions from delegates, the HSE Chief Information Officer Mr Fran Thompson explained how the HSE submitted a business case for an EHR to the Department of Public Expenditure and Reform (DPER) and the Department of Health, as part of the 2015 e-health strategy.

However, in 2018, DPER rejected the submission.

Mr Thompson said DPER “wanted to see the outcomes and benefits from the investments” made in the New Children’s Hospital prior to making such a national investment.

He added it was his understanding that the rejection was not only due to funding, but also doubts about the overall capacity to deliver the project.

“Within e-health, we had a very small team starting off,” he pointed out.

In his opening statement, Mr Thompson said that the rejection meant the HSE had to work on “multiple tactical solutions” to digitise and deliver on the e-health agenda.

“The reality, however, is that no matter how many point systems are delivered, from a holistic, clinical, and patient perspective, this approach will always be sub-optimal,” according to Mr Thompson.

Currently, there are several examples of modern EHRs within the health service. St James’s Hospital has an EHR for all its patients and four of the maternity hospitals also have an EHR. The board of the HSE has sanctioned the expansion of the newborn and maternal EHR to the Coombe Women’s and Infants’ University Hospital and to the maternity unit in University Hospital Limerick. This will start in 2023 and is scheduled to be completed in 2024.

The New Children’s Hospital has completed a procurement for an EHR. The implementation of this EHR is underway and on track to be delivered in tandem with the opening of the main hospital. In addition, the HSE is deploying an EHR into the new facilities at the National Forensic Hospital and the National Rehabilitation Hospital.

Part of the original national EHR proposal, which was not approved, was to deploy a patient-clinical portal. The HSE is in the process of updating a business case and has been in discussions with the Department of Health to ensure approval. The proposed portal will utilise the data from the existing HSE systems to populate the portal. Patients will have access to view their records and clinicians will have access to the portal to support them in their work. Existing electronic record data can populate the portal and if the national EHR is approved, it will populate the portal as well.

While Mr Curley’s comments about the HSE’s resistance to change are likely not far from the truth, the Executive needs more support than the Government has provided to date if a national EHR is ever going to become a reality.

When will the health service learn from the hospital overcrowding crises that occur every January?

After a couple of years of a series of unprecedented events, the country has been hit by something so unusual and unexpected in recent weeks that it seemed to take the entire health service and the those in charge of running it completely by surprise. Apparently, for the first time ever, January followed December and, along with it, brought a completely unpredicted influx of winter
respiratory illnesses. Such an occurrence was totally unforeseen and, as such, absolutely nothing had been done to improve infrastructure and staffing to meet the overwhelming demand.

In the face of the politically unwelcome headlines of almost 1,000 people languishing on emergency department (ED) trolleys, the HSE and Department of Health heads sprang belatedly into action, in order to be seen to be finally doing something.

GPs were asked to run extra evening and weekend clinics, although, anecdotally for the most part, take up was low because cloning technology is still pretty primitive. It is already impossible to find enough GPs to address the current shortage, let alone find more people to work even more hours at short notice.

The caricature of the wealthy consultant away on the golf course is an easy one to reach for and politically expedient when trying to push through a new contract, and so they were also exhorted to work over weekends. The implication being that this was a completely new occurrence for them.

Yes, a seven-day service is a laudable goal to aim for. It absolutely is a fact that we do need more senior clinical staff on the ground making decisions after 5pm on a Friday. However, it isn’t just doctors and nurses that are needed to run a 24/7 efficient health service. It’s also allied health professionals, Fair Deal administrators, nursing home co-ordinators, public health nurses, the list goes on and on. It’s all well and good trying to discharge more patients, but not very helpful if there is nowhere to discharge them to or any supports in place once they leave the hospital.

As it stands, we just don’t have the staff to run such a service and so expect people to work the likes of 12 days in a row, completely in contravention of any laws around safe working practices. I already predict the headlines in a couple of months about doctors’ large overtime payments for all these long hours that they have worked.

Walking through an ED often felt like a horse wearing blinkers – you had to stay laser-focused on the one task you were doing because to take in the enormity of all around you would be overwhelming

A health system collapsing under so much strain is inhumane for patients, but it’s also inhumane for the staff. Walking through an ED often felt like a horse wearing blinkers – you had to stay laser-focused on the one task you were doing because to take in the enormity of all around you would be overwhelming. Leaving shifts knowing that, despite your best efforts, people were receiving substandard care is cruelty in itself and not what any of us signed up for.

Asking people to work long, difficult hours is just going to lead to even more burnout of staff that are already exhausted after long, traumatising pandemic years. There will be even more wringing of hands when staff continue to flee to the likes of Australia at the first opportunity they get. Every so often someone comes up with the bright idea of stopping doctors from leaving the country in order to ‘pay back their debt to society’. They conveniently forget that the taxpayer also funds teaching and engineering and English literature degrees, but no one suggests that we enter them into indentured servitude. The approach to healthcare staff in this country very much continues to be that the beatings will continue until morale improves.

A new approach is needed. There is always going to be a spike of illnesses in winter months, but the health service is now running in crisis mode all year round. I am always suspicious of people who claim to have the one solution that fixes all issues, as it is a lot more complex than that.

As the days are getting slightly longer and the spring bulbs emerge from the ground, the immediate crisis is thought to be over because now only around 500 people are languishing on trolleys rather than 1,000. I predict that the news headlines will quickly move on to the next big story and not a single lesson will have been learnt. I am already looking forward to next January when the same unprecedented crisis happens once again, just as before.

The impact of non-adherence to a gluten-free diet can have wide-ranging effects on our patients

 I want you to consider that everything we’re doing is wrong.” This was the opening statement made by a Professor of Gastroenterology presenting at a UK symposium last year. The topic of discussion was how we monitor coeliac disease after initial diagnosis. With adherence rates reported to be between 42-and-92 per cent, it is true that many coeliacs are at risk of developing complications such as lymphoma, ulcerative jejunitis, osteoporosis, infertility, and nutritional deficiencies.
In children signs of non-adherence include faltering growth and delayed puberty. To reduce the incidence of comorbidity we must have the right tools to detect gluten exposure. There are a variety of methods used in practice to assess adherence to a gluten-free diet – validated scores, questionnaires, ask the patient, request a dietitian review, and serology. Biomarker and score results give us quick reassurance; until they don’t.  

Long-term follow-up in coeliac disease remains controversial. Currently, there are no effective non-invasive markers of gluten-free diet adherence, with point-of-care testing, dietary adherence questionnaires, and serology all having poor sensitivity for the detection of villous atrophy (VA). Despite this information being disseminated in the literature and at conferences, serological response continues to be used as a surrogate for histological recovery. A recent survey reported 65 per cent of gastroenterologists in Canada used bloods including serology as a monitoring tool. The details suggest serology was performed less frequently in adults than children, in favour of routine intestinal biopsy, showing a trend towards the use of the gold standard assessment. 

There are inherent difficulties in using coeliac serology as a monitoring tool. In order to obtain clinically-meaningful endpoints, it is essential that patients are eating a certain amount of gluten prior to testing. Guidelines vary on the amounts and duration with one institution saying gluten in more than one meal daily for six weeks, and another recommending one-to-three slices of bread daily for one-to-three months before testing. Once you can be sure the patient is adequately prepared for a test there are a few other serological anomalies to consider. It is reported that 1.7-to-5 per cent of coeliacs are affected by seronegative coeliac disease (SNCD).  This is a rare and still poorly defined form of coeliac disease, presenting with negative serology, villous atrophy, genetic compatibility, with or without symptoms of malabsorption and who demonstrate clinical and histological response to a gluten free diet. A further 2 per cent of coeliacs have IgA deficiency. This is a separate entity to seronegativity. In this case, if not done automatically by the lab, you need to order IgG antibodies as an alternative to IgA antibodies. According to a recent meta-analysis, sensitivity of the anti-tissue transglutaminase (tTg) antibody for ongoing villous atrophy was only 43.6 per cent. So even if well considered and accurately prepared there appears to be a limit to how much serological testing can tell us about mucosal healing. It is like flipping a coin. There is a 50 per cent chance of persistent villous atrophy with a negative IgA tTg result. 

If you decide to pursue biopsy as a method of monitoring and find persistent villous atrophy, there are caveats here too. There are many mimics of villous atrophy including use of non-steroidal anti-inflammatory drugs (NSAIDs) or olmesartan, helicobacter pylori gastritis, giardiasis, collagenous or microcytic colitis to name but a few. The timing of a biopsy must also be selected carefully. Villous atrophy improves on a strict gluten-free diet, but this may take two-to-three years so be careful not to repeat the biopsy too early. 

It has been suggested that immune tolerance is possible over time. A recent study showed that neither occasional nor voluntary dietary gluten intake was associated with the onset of clinical, serological, histologic, or endoscopic changes in a group of coeliac patients. Interestingly, no association was found between histological alterations and the amount of gluten intake following diagnosis. This means the traditional advice of a strict gluten-free diet for all warrants further investigation and review. The tolerable amount of gluten is still contended, and this casts a shadow over current dietary advice. Perhaps there is a subset of patients where a more relaxed approach can be considered, but we need the monitoring tools to allow that to happen in a safe way.

Dietetic assessment of adherence also has limitations. Targeted dietetic intervention through removal of identified gluten sources or avoidance of trace amounts of gluten led to resolution of persistent villous atrophy in only 50 per cent of patients studied. 

Coeliac serology appears to be a poor surrogate marker for mucosal recovery, and dietary assessment may fail to uncover a potential gluten source in some patients with ongoing villous atrophy. This could be explained by non-disclosure or under reporting of dietary intake, but warrants further investigation. Although current clinical guidelines do not recommend routine repeat biopsy, it appears to be the surest way to monitor mucosal healing and response. Although such a change in clinical practice would have financial implications, the cost of non-adherence has a clear impact on the health of individuals. Equally, an overly strict gluten-free diet can affect quality-of-life. In the meantime, we need more accurate non-invasive markers of mucosal damage in children and adults with coeliac disease who are following a gluten-free diet. Perhaps novel biomarkers such as gluten immunogenic peptide (GIP) might have the ability to increase detection rates of non-adherence. This convenient urine test checks for gluten exposure. There has been criticism of false negatives, but researchers say testing over several days is a pragmatic approach. According to one study, three negative urine tests from three different days revealed a 97 per cent possibility of no villous atrophy. New biomarkers are promising and will add to our understanding of gluten metabolism and, with additional studies, could be used as a supplemental tool in the future management of our patients.   

The spectrum of gluten-related disorders (GRDs) includes dermatitis herpetiformis, gluten ataxia, wheat intolerance and non-coeliac gluten sensitivity. Greater awareness of testing guidelines is important to both diagnose and effectively manage GRDs lifelong.

UK National Institute for Clinical Care and Excellence (NICE) guidelines recommend that serological testing for coeliac disease should be considered in people with unexplained neurological symptoms, particularly peripheral neuropathy or ataxia, specifically anti gliadin antibodies (AGA). According to the gluten sensitivity neurology service at Sheffield University, UK, these disorders account for 26 per cent of all neuropathies. A new cut-off point for AGA has been set to diagnose neurological dysfunction such as gluten ataxia (GA). GA is the second highest cause of ataxia in the UK; 40 per cent of these have villous atrophy. The significance of abnormal AGA outside of enteropathy in untreated GA, however, is the prevention of cerebellum atrophy. A gluten-free diet normalises AGA if detected early. It also improves spectroscopy imaging. In the case of late diagnosis, the diet can only stabilise GA. Unfortunately, this tends to be the case in the absence of gastrointestinal symptoms and average time to diagnosis is 10 years resulting in permanent neurological damage. Ask a patient to stand on one foot and walk heel to toe to assess gait. To further increase detection rates, healthcare practitioners should be alert to reports of intractable headaches and balance problems. Patients usually do not report these to their gastroenterologist because they are focused on bowel issues, but these may have been reported to a GP or other healthcare professional. Coeliac disease also increases the risk of vascular dementia.  

In conclusion, the impact of non-adherence to a gluten-free diet can have wide-ranging effects on our patients, from chronic micronutrient deficiencies to infertility. Current monitoring methods fall short in detecting rates of non-adherence in coeliac disease, leading to comorbidities that are largely preventable. Long-term monitoring is not as straightforward as we once thought and requires more thorough consultation. Do not rely on serology alone. Serology, dietary adherence, and mucosal remission do not have a perfect relationship. The only way to know for sure if your patient is responding to diet therapy is to repeat biopsy. GRDs are lifelong chronic conditions. Patients require a long-term monitoring plan at time of diagnosis with access to appropriate services and healthcare professionals including a registered dietitian. Despite the high prevalence of coeliac disease in Ireland, there are currently no dedicated community or primary care services to co-ordinate the necessary follow-up. Care is managed by gastroenterology outpatient departments and GPs around the country. To reiterate the opening statement, please consider everything we are doing is wrong.

The “final considerations” regarding the governance relationship between the six new regional health areas (RHAs) and the HSE leadership are ongoing, the Medical Independent (MI) has been informed.

Issues related to the governance structure between the RHAs and the HSE centre were raised at the November meeting of the regional health areas advisory group.

“It was noted that the six RHAs and the HSE centre will make up the national health service collectively and therefore should work together in an efficient manner,” according to the meeting minutes.

The group also discussed data and digital capability within the RHAs and the importance of achieving “interoperable systems that can be governed in a nimble and modular way”.

“Reporting lines were explored, as were structures beneath the senior leadership team roles. It was identified that these required further thought.”

A Department of Health spokesperson said that the governance and relationship between the RHAs and the HSE was still being discussed.

“RHAs will be large and complex organisations,” the spokesperson told MI.

“Matching responsibility with the necessary decision-making power and accountability for organisations of this size is key to think through and get right.”

An RHA implementation plan is due to be presented to the Government in the first quarter of this year.

The Defence Forces spent over €5 million on agency doctors from 2019 to late 2022, excluding VAT, according to figures obtained by the Medical Independent (MI) under Freedom of Information law.

The expenditure grew from €1.3 million in 2019 to €1.4 million in 2020 and €1.5 million in 2021. The figure to November of 2022 was €995,841.

The highest amounts were paid to Advanced Medical Services (€1 million in 2019; €1.2 million in 2020; €1.2 million in 2021; and €871,138 to November 2022).

The expenditure comes in the context of recruitment difficulties in regard to medical officers due in part to an unattractive salary scale.

“Costs for agency staff are demand-led and are paid from a subhead covering all professional consultants and specialist fees,” said a Defence Forces spokesperson.

Meanwhile, the spokesperson confirmed that a review into the military medicine training scheme has recommended its continuation, “pending the agreement of a number of administrative matters between the parties to the scheme, including the payment of relevant allowances.”

The training scheme provides dual qualification in military medicine and general practice. An ICGP spokesperson told MI: “Further recruitment onto the military medicine training scheme is awaiting the signing of a framework agreement between the HSE, the
ICGP, and Department of Defence. The first military medicine trainee is due to complete the full cycle of training in late April 2023.”

Currently, there are 22 medical officers in the Defence Forces, of whom three are undertaking the military medicine training scheme. There are six medical officer vacancies. On the day of the response from the Defence Forces, 10 medical officers were deployable overseas. Reasons for not being able to deploy overseas included training requirements (military medicine scheme), illness or a medical classification code that deemed personnel unfit for overseas service.

Three medical officers are deployed overseas at any given time – two in Lebanon and one in Syria. 

MI previously reported that a 130-strong Defence Forces contingent were deployed to the volatile Golan Heights in early October without a medical officer, which was the first time this had occurred.

At the end of last year, a national strategy for genetic and genomic medicine was finally launched. David Lynch examines the potential that the strategy offers to improve clinical care and research, as well as the likely challenges in implementation

“When I just think back at my time as a junior doctor, there are things done now that nobody would have believed back then,” according to Dr Colm Henry, HSE Chief Clinical Officer (CCO).

Dr Henry believes that genetic and genomic medicine has “revolutionised treatment”.

“When I was a junior doctor, I wouldn’t have dreamed about the way personalised medicine can be delivered now,” the HSE CCO told the Medical Independent (MI). “For example, cancer treatments were delivered in a very ‘one-size-fits-all’ manner. There were many conditions we thought were sporadic and random – we now know them to have a genetic foundation. It has revolutionised treatment.”

However, until now, much of this revolution has not been experienced in Ireland.

The new National Strategy for Accelerating Genetic and Genomic Medicine in Ireland, published in December 2022, aims to change this situation (see panel).

According to the HSE’s website, there is “room for improvement” in the medical genetics and genomics services offered in Ireland when compared to other European countries.

The strategy states: “To date, Ireland has made some progress in developing its genetic and genomic services, with pockets of excellence evident throughout the country. However, to fully realise the benefits of genetics and genomics, there is an urgent need to mainstream them so that they can become an integral part of our routine care delivery.”

Dr Henry said: “We wanted to make sure this country was better placed, not just in addressing existing structural and manpower problems, but [to] have a clear sense of direction of where we are going.”

In terms of recruitment in genetics, he added that Ireland wants to be a “place where we can attract the brightest and the best to work here”.

The Review of the Clinical Genetics Medical Workforce in Ireland 2019, produced by HSE National Doctors Training and Planning, found that only four clinical genetics specialists worked in the health service nationally at the time. Of these specialists, three were over the age of 55. This was against a backdrop of demand for at least 15 consultants. Irish patients were without access to genetic counselling and faced waiting times of between 15 and 18 months for priority cases and over two years for routine referrals.

In August last year, MI reported that the absence of a genomics strategy and multi-annual budget led to a “world-leading expert in genomics” declining the role of director of the planned national genetics and genomics medicine network.

However, Dr Henry is confident the new plans for the creation of a national office of genetics and a specific workforce plan will have a galvanising impact.

“We had difficulties recruiting before, it’s absolutely true,” he said, referring to MI’s August 2022 story.

“The reason is that we didn’t have a strategy for that person to implement and now, of course, not only do we have a strategy, we have €2.7 million from the Department of Health to kickstart some of this, including establishing the national office.”

He said the new positions in the national office will include a national director and clinical lead, a laboratory director, a bioinformatics director and support staff. “We need these staff to singularly focus on the priorities of year one, such as producing a workforce plan and also to look at current training, not just in genetics, but in other medical disciplines.”

“Strategies are very helpful in healthcare because a strategy gives you a sense of direction,” said Dr Henry. “We have a trauma strategy as you know, we have a cancer strategy, all of which have really improved the care in their particular domains…. We found that in the absence of a strategy, while we had areas of brilliance [in genetics], pockets of expertise, it was not tied together in a cohesive way. Also, in the absence of a strategy, you cannot guide multi-annual investment and address the areas of weakness in a very structured way.”

Recruitment

Dr Henry said six genetic counsellors and two consultant geneticists would be recruited prior to the creation of a new workforce plan. Beyond this, he has high hopes the strategy’s very existence will prove to be an attraction to doctors living abroad, while also impacting the training decisions of medical graduates.

“First thing is, we already have some excellent people… lots of clinicians working here would have brought their expertise back from training abroad,” Dr Henry said.

“But what I have found is when there are national strategies, such as cancer, it tends to attract staff. It tends to attract people home, it gives an incentive to people to study a particular area.

“If you are a medical graduate, for example, considering a career in the core discipline of medical genetics, or developing a specialist interest as part of another specialty, we find that [the existence of a strategy] tends to have a positive contagion effect on the healthcare system. It tends to have a snowball effect in interest in training and also attracting people home.”

On the impact of the national office, Dr Henry predicted there will be a high level of activity “in year one, and the office will drive it”. He said it will “become the engine of what happens in year two, three, four, and later”.

Also, the office will “advocate” and “compete for funding each year”.

Potential

MI has attended two major conferences on genetic and genomic medicine in recent years. At both events clinicians raised the lack of a national plan as a serious hurdle for progress. Now the strategy is published, how significant will it really prove?

“I think this is vitally important,” Prof Orla Hardiman, Clinical Lead, HSE National Clinical Programme for Neurology, and Consultant Neurologist at the National Neuroscience Centre of Ireland, Beaumont Hospital, Dublin, told MI.

Prof Hardiman described the new strategy as a “consensus document” generated “by all relevant stakeholders”. She added that it was a ‘roadmap’ that covers the perspectives of all involved, and such buy-in “will enable early implementation”.

“It is also very important that there is a very strong user perspective, which is essential,” she said, stating the “patient voice” was particularly important.

“The strategy also recognises the necessary interplay between clinical and research work in genomics, as the two are intimately linked.”

Prof Hardiman said the “next steps will now be very important”. 

“As our understanding of disease evolves, it is very clear that genomics will inform much of our decision-making.”

She noted that in the past, the concept of genomics was confined to conditions for which there is a defined chromosomal abnormality or conditions with a clear inherited component that can be mapped across families. However, currently “genomics have the potential to inform decision-making across a wide range of disciplines”, she said. 

“This is very much the case now in oncology, but it is also in evolution in all specialties as a precision medicine approach helps us to target individual pathogenic pathways, many of which are modified by genomic variation. And we also have early genomic therapies that are likely to expand over the coming years.”

Concerns

Prof Hardiman also highlighted potential challenges with implementation.

“The next step will be [to] ensure that there is adequate funding to implement a state-of-the-art programme,” said Prof Hardiman. 

“I am concerned that the budget allocated for this may not be sufficient. A joint professorship in genomics [between University College Dublin and Trinity College Dublin] has been advertised to move the field forward, but the programme will require a very significant investment in infrastructure and personnel.”

She added that consideration would need to be given to whether the programme will be centralised, or whether each of the major teaching hospitals will be encouraged to develop a genomics department, with an appropriately funded cohort of clinical and laboratory personnel.

“As a neurologist with a specialty interest in the genomics of neurodegenerative diseases, my strong preference would be to have genetic counsellors linked to the service that I and my colleagues provide, rather than a centralised service with genetic counsellors that cater for the entire range of genetic disorders. However, this remains to be fully discussed.”

Prof Hardiman said discussion would also need to take place on the funding and access to a new genome biobank “and whether this should be funded out of the public purse, or in collaboration with private entities”.  

“The latter consideration has been subject to much discussion over the years and from my understanding has not been fully resolved.”

Ethics

In May 2021, an online Royal Irish Academy conference focused on the lack of a national genomics policy and bioethical issues. Dr Oliver Feeney (PhD) is an Associate Researcher with the Centre of Bioethical Research and Analysis, Discipline of Philosophy, University of Galway, and was organiser of that event.

“Given the developments in genomic technology since the turn of the century, from whole genome sequencing to CRISPR gene editing, such a strategy is long overdue,” Dr Feeney told MI. Noting concerns over the “unregulated environment”, he said the strategy should not be considered a “finished product”, but something that has to continue to develop further in the coming years.

Dr Feeney said he believed “national coordination” would be pivotal for the strategy to prove successful. He said the strategy “emphasises public and patient involvement and genetic literacy to a great degree”.

“It also highlights the importance of ethical safeguards, particularly in terms of consent and data protection. These are all positive steps. But this is just the beginning of the ethical discussions that need to be much more developed and elaborated in the forthcoming months.”

Dr Feeney said “the strategy touches upon some ethical issues, and gestures towards the importance of ethics in general, but little more”.

“A number of issues face genomics as opposed to earlier forms of genetic research and other non-genomic forms of research,” he added. “For one thing, the reality or rhetoric of genuine informed consent with the individual keeping control over their data may be increasingly strained in a context where research is large-scale, international, and where secondary use of such data may elude such control.”

He pointed out “transparency is needed” regarding promises in the strategy to be able to refuse consent in the future and the right to withdraw your data from research.

The strategy notes that guidance on consent for genetic and genomic clinical and research purposes will be developed in line with the HSE national consent policy and the national consent for research policy, which is currently in development.

“The clinical application of whole-genome sequencing can also potentially identify variants in genes for unknown functions or where uncertainty exists over the relation to disease,” he said. “Such incidental findings, which are unrelated to the goals of the test or study, and are discovered unintentionally, raise questions on what to do with such discoveries in a clinical context.”

Dr Feeney added that other ethical questions arise including those “regarding the risk of genetic discrimination and stigmatisation”; how it will affect persons with disabilities that may have a genetic component; and how this information may contribute to increased abilities in predictive decision-making in the context of assisted reproduction.

“These are only the tip of the ethical or bioethical issues involved. Minister for Health Stephen Donnelly, in his foreword to the strategy, said that it ‘lays out a wider vision for Ireland’s future genetic and genomic service’. Insofar as it does, this vision needs a stronger bioethical lens than currently is the case.”

He noted that there has been “some movement” in terms of national ethics or bioethics infrastructure (“For instance, the national office for research ethics committees has national coordination at its core”). However, Dr Feeney argued that “in terms of broader bioethical questions, we are still in a largely ad hoc situation”.

As our understanding of disease evolves,
it is very clear
that genomics will inform much of
our decision-making

Literacy

Improving genetic literacy is a major aim of the strategy, Dr Henry told MI, not only among the general public, “but also among healthcare workers.”

For doctors, the aim is to raise “awareness of genomic medicine for all medicine disciplines, not just those training to
be geneticists”.

“I don’t want to be critical, there is a high level of awareness among medical graduates who have a very high education from our medical schools, about the power of this,” said Dr Henry. “But we want to make sure that we avoid what somebody called the ‘ghettoisation of genetics’ into a core specialty. There needs to be a heightened sense of awareness of its power and its role and application across all disciplines, not just the core discipline of genetics.”

Is there sufficient information technology (IT) infrastructure underpinning the health service to carry this strategy?

“Yes, of course, that is absolutely huge, no doubt about it,” Dr Henry replied. He said that while IT is not something the strategy is focused on over the first year, “once we get to a higher level” it will be crucial.

“The creation of an individual health identifier will produce more efficient and safer care not just for genetics, but right across our health system. It has to a priority when you consider not just the safety issue, the information issue, but also the waste issue that goes along with not having a single identifier for patients that can be used at all points of presentation in the healthcare system.”

The HSE has changed the reporting line of the Confidential Recipient despite the former post holder warning the board that this would damage the role’s “independence”.

Up to late 2022, the Confidential Recipient had a direct reporting line to the HSE CEO. However, the post now reports to the National Clinical Director of Quality and Patient Safety. According to the HSE, the Confidential Recipient acts as an “independent” advocate for adults with a disability and older persons receiving services in residential care, day services or any community service from the HSE and HSE-funded organisations. The role was created in 2014 after the Áras Attracta scandal.

“In the period 2014 to 2022 the Confidential Recipient reported to the CEO of the HSE,” an Executive spokesperson told the Medical Independent (MI). With the appointment of a new Confidential Recipient in late 2022, “it was decided
that this reporting relationship would change in line with service synergies.”

The spokesperson said the “confidentiality and independence” of the role is “respected and maintained”.  The Confidential Recipient will have access to the HSE’s safety and quality committee meetings “on an as needed basis and at a minimum once a year”. They will also “still have access” to the CEO “if and when the need arises”.

In September 2022 the then Confidential Recipient, Ms Leigh Gath, attended a HSE board meeting prior to stepping down from the role. According to minutes, a discussion took place on the “recommendation by the current CR [Confidential Recipient] to the board for their consideration in relation to the relocation of the reporting line of the CR from directly to the CEO to the National Clinical Director of Patient Safety be reconsidered to maintain independence of the role”.

“The board agreed and it was noted that the CR will continue to have access to the safety and quality committee.”

The HSE informed MI that the board had agreed with the change in reporting line.

Commenting last year on the independence of the role, Ms Gath told MI the then CEO Mr Paul Reid was the only person in the HSE to whom she was answerable, and Mr Reid “never” interfered with her work.

In November, the HSE announced the appointment of Ms Gráinne Cunningham-O’Brien as the new Confidential Recipient.

The “importance” of recruiting a research manager and developing a research strategy for the National Cancer Registry Ireland (NCRI) was raised at an NCRI board meeting.

According to minutes of the September 2022 meeting of the NCRI board, the “need for a research manager” was highlighted in a peer review by the International Agency for Research on Cancer (IARC), which was conducted in 2022.

The issue was also raised by Dr Gabriel Scally after he visited the NCRI in March last year.

In October 2022, Dr Scally published the final progress review of the implementation of the recommendations from his scoping inquiry into the CervicalCheck screening programme.

“The NCRI traditionally had a resource to lead out on the research function, but the post was not filled following the resignation of the most recent research manager in early 2020,” according to the NCRI board minutes. 

“The need for a research manager was mentioned in both the IARC peer review and the review by Dr Gabriel Scally…. The board also emphasised that re-instating this post is key in order to develop the NCRI research function.”

The minutes stated that during his visit in March 2022, Dr Scally “expressed concerns about the NCRI’s resource levels and the NCRI took these concerns into account when submitting 2023 estimates to the DoH [Department of Health], requesting additional registration, data integration, and research posts”.

An NCRI spokesperson told the Medical Independent (MI) that the board “is currently scoping out the research manager role in advance of submitting a business plan to the Department of Health”.

“Recruitment to the post is subject to approval of the business plan, including the related budget.”

Separately, the September minutes also noted the failure to find a suitable candidate to fill a vacancy on the board that required “expertise in data collection, processing, and analysis”. The failed recruitment campaign took place in February to April 2022.

However, the NCRI’s spokesperson told MI that the position had since been filled. 

“The NCRI board is delighted to welcome the Ministerial appointment of Mr Niall Murphy as a board member,” said the spokesperson.

“[Mr Murphy] brings a wealth of experience with over 25 years’ international experience in the technology and digital transformation area across all industries including healthcare.”

The HIQA CEO wrote to the Secretary General of the Department of Health stating that the Authority can contribute to supporting “sustainable delivery” within the nursing home sector.

In the letter dated 3 November 2022, obtained by the Medical Independent (MI) through Freedom of Information law, CEO Ms Angela Fitzgerald referred to meeting Mr Robert Watt at a recent health and social care leaders’ event.

“I enjoyed our discussion on key issues facing the health system at this time and how they might be addressed to deliver sustainable change,” wrote Ms Fitzgerald.

She referred to a brief discussion on how HIQA can support the priorities for health and social care services, with specific reference to “leveraging” evidence synthesis to inform decision-making and “driving value”, particularly in access to care.

“HIQA also has some thoughts on the specific challenges facing the nursing home sector at this time and how we might support sustainable delivery within the sector having regard to the experience of other jurisdictions in this area,” according to Ms Fitzgerald’s letter.

Minutes of HIQA’s board meeting on 9 September 2022 stated that research commissioned by the Department on international approaches to the regulation of nursing home care was “progressing well”.

A spokesperson for the Authority told MI this research has been submitted to the Department for consideration.

The minutes also noted the provision in the Patient Safety Bill that would require HIQA’s Chief Inspector to undertake or commission patient safety reviews of specific incidents in nursing homes, such as unexpected deaths.

“The provision could potentially have a significant impact on workload,” the minutes stated.

HIQA’s spokesperson commented: “We are considering the provisions of the Bill and its impact on the expanding remit of the Authority and are working with the Department on the implications of the Bill to enable us undertake the extra work.”