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Leading from the front to get Sláintecare up and running

Sláintecare is a long-term plan to fix the health service.  It is the product of an all-party Oireachtas committee, with a commendable level of input from stakeholders, including patient advocacy groups.   From a service design perspective, it makes a lot of sense, even though there are some important omissions, including the need to embed clinical research into practice at all levels and a commitment to support academic clinical practice.

But over one year from its launch, we remain in the same  ‘crisis fire-fighting mode’ that led to the formation of Doctors Alliance in 2006/2007.  We were an advocacy group that came together to argue against privatisation of Irish healthcare. The financial crisis intervened, with the ensuing consequences for all services.

Eleven years on, strategic planning of the public health system  seems a luxury that is continuously deferred. Sláintecare is already behind target and there are real concerns that the necessary funds may not be available  to implement the required changes.    Cross-party collaboration appears to have fragmented and partisan politics seems to have re-emerged. 

This is a great shame. Without political will, the prospect of multi-annual budgeting with investment in the necessary changes is remote and Sláintecare is at risk of being relegated to the shelves containing all of the previous blueprints for reform.  

Staged implementation

But perhaps we should try to be more optimistic. Not all aspects of Sláintecare need to be implemented at the same time. Notwithstanding all of the crises, small changes that we make can positively impact on the lives of our patients. We must continue to advocate for the vision of a responsive healthcare system that is free at the point of entry, accessible and based on need and not on ability to pay. But it is possible, indeed imperative, to try to build upon what is good within our system. We should recognise the  initiatives that reflect the broad principles of Sláintecare, advocate on their behalf, and ensure that they are formally embedded within the system and replicated where possible. 

Patient groups

In this context, there is much that can be achieved with grass-roots support. There is a major and under-used role for patient groups here. In Ireland, many patient organisations already provide services that are part of standard healthcare systems in other countries. Harnessing this patient-oriented expertise, and embedding it within the existing delivery of care, can help to integrate services that are otherwise fragmented. There is considerable appetite within the voluntary sector in this regard. 

Examples of how this operates include the specialist nursing service provided by the Irish Motor Neurone Disease Association (IMNDA). These nurses, funded entirely from philanthropic donations to the Association, work closely with the National MND clinic in Beaumont Hospital, and ensure care is fully integrated between hospital and community-based services. The IMNDA also maintains an equipment bank that is available to patients based on clinical need rather than ability to pay. This is Sláintecare in action.  And the IMNDA is not alone.  Many other voluntary organisations provide similar types of clinical services. 

Mainstreaming funding for these services through well-governed patient advocacy groups could provide targeted and sustainable care for patients, fully aligned with the aspirations of Sláintecare. 

Community setting

One of the fundamental planks of Sláintecare is to provide appropriate care for patients close to their home, preferably within a community-setting. This requires that we value, promote and enhance the work performed by those working within primary care and that we seek to  enhance the co-ordination between specialist teams and primary care teams. 

There are many excellent primary care teams across the country. Clearly, the essential role of the GP must be recognised and valued. This is essential for Sláintecare to work.  In the meantime, we can seek to provide better integration between hospital services and professionals working within a community setting. This could  be achieved with some planning and modest additional investment of liaison services. 

It is also possible to think laterally about how we might address the long waiting lists for some of our specialist clinics in Ireland.  In many instances (including neurological care), Irish clinics  have a much  lower new-to-return ratio than in other countries. The reasons for this are multifactorial, including the perverse incentive that drives those without medical cards to hospital clinics (free) rather than GP services (payment required). Notwithstanding this, there remains considerable scope for referral of patients with stable conditions to community-based services. This could be achieved at modest cost by providing supportive outreach services, including specialist nurses and dedicated phone lines. Such a model has already been successfully developed for some conditions (eg, diabetes, epilepsy, etc) and could be replicated.

Moreover, audit of outpatient referrals to specialist services indicates that the most common referrals of new patients can be categorised into groups of common symptoms. For example, in neurology, the majority of referrals  include requests for assessment of headache, dizziness, seizures, falls, and non-specific neurological symptoms. A high percentage of these patients receive return visits, which would not be the case in other healthcare systems.  Return visits could be reduced if systems were in place for review of investigations and structured management plans implemented. This would require a modest investment in IT infrastructure, and a system of reliable communication between hospital services and primary care.

Standardising clinical practice

And with respect to hospital-based inpatient care, there is considerable variance in the utilisation of resources both within and  across hospitals. To date, there has been limited appetite for examining this variance to understand the underlying factors.  While clinical independence is highly valued by Irish clinicians, it is also important that wide variances in clinical practice are captured, evaluated, and where necessary, modified to ensure both  good clinical practice and responsible use of resources. 

A national audit of resource utilisation would be difficult to implement at present. However, a pilot study within a small number of teaching hospitals through the Clinical Leads programme could be feasible. Designated individuals could be trained in methodologies to measure variance. This in turn would provide an early indicator of the likely variance within and across centres in bed utilisation, resource utilisation and diagnostic complexity.

Sláintecare is the best chance that we have to develop a properly-functioning and integrated system of health. The roadmap to improve our healthcare system has been drawn. There is no doubt that we must hold our politicians and policy-makers to account to ensure the provision of  long-term, multi-annual funding to facilitate this.      

But at the same time, as healthcare practitioners, we also have a considerable opportunity to lead from the front. Anybody for  Doctors Alliance, Version 2?

 


A plan for implementation

More than a year after Sláintecare was released, the Government published an implementation plan for the strategy in August. This followed the appointment of Dr Tom Keane as Chairperson of the Sláintecare Advisory Council and Ms Laura Magahy as Director of the Sláintecare Programme Office.

Key actions in the first three years of reform include:

Establish HSE Board and reconfigure the HSE to improve accountability and support integrated care.

Deliver a new model of healthcare through the development of a Citizen Care Masterplan for the health service and new models of care that are population-health centred.

Launch a programme of public engagement on Health Outcomes and a nationwide series of events in 2019/2020 to promote health and wellbeing.

Enhance community care, including the expansion of community-based diagnostics facilities, a new community nursing service and a continued programme of investment in primary care centres.

Reform the GP contract, including providing for a greater role in chronic disease management.

Continue investment in community mental health services.

Introduce a new statutory scheme for homecare services.

Review the eligibility framework to develop a roadmap to achieve universal entitlement.

Increase bed capacity in public hospitals.

Choose locations and commence the planning process for new elective hospitals in Cork, Dublin and Galway.

Tackle long waiting times for acute hospitals by continued investment in the National Treatment Purchase Fund (NTPF) and the development of an integrated waiting list management system.

Develop a national clinical strategy and Hospital Group strategic plans to guide organisation of hospital services.

Roll out eHealth systems and infrastructure.

Source: Department of Health

 

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Cancer screening is fallible but still saves lives

Doctors around the country have no doubt been listening to the questions of women confused and understandably upset by the CervicalCheck controversy. At the Irish Cancer Society, we are worried that this is creating wider concern about all cancer screening.

Screening for cancer is fallible and not diagnostic. A Cochrane Review published into studies of cervical screening from around the world found that for every 1,000 women screened with the PAP test (a forerunner of the current liquid cytology test), around 20 will have precancerous changes. But the review concluded that the test would only identify 12 of the women, missing eight of them.

The liquid cytology test employed in cancer screening cannot reliably detect adenomas, which arise deeper in the cervix.  Testing itself is also associated with a very small but finite risk of errors, which can occur from a number of sources: Administrative, technical or due to human error, as happens with all medical tests.

Screening is not perfect, but its advantages by far outweigh its pitfalls. The Irish Cancer Society firmly believes that attending cervical screening appointments is a vital way for women to protect themselves from this deadly cancer. Simply put, screening save lives.

Prior to screening, Irish cervical cancer rates were rising at 4 per cent per year.  In the decade since CervicalCheck was established, more than 1,300 cancers and 50,000 high-grade and 37,000 low-grade pre-cancerous abnormalities have been found, leading to preventative treatment that has meant that incidences of cervical cancer have decreased by 7 per cent each year.

As members of the medical profession, readers of the Medical Independent can do their part in conveying this life-saving message. Each year in Ireland, approximately 300 women are diagnosed with cervical cancer, but this number is falling. Thanks mostly to screening, almost half of them receive their diagnosis at stage 1 of the disease, with 95 per cent of these women surviving for at least five years post-diagnosis and the majority being cured.

In the case of more than 6,500 women each year, advanced precancerous changes will be found, which will need treatment to reduce the chance of them becoming a cancer.

But the fewer women who attend appointments, the more likely these precancerous changes will evolve into cervical cancer.

Clearly, confidence in the cervical screening service has been badly shaken. Not only does the medical community need to work with the HSE and organisations like the Irish Cancer Society in restoring such confidence, we also have to work to ensure a contagion of suspicion doesn’t spread to our breast and bowel screening services.

All three cancer screening services are designed to cut cancer deaths by trying to detect the likely presence of a target cancer at an earlier stage when intervention has a better chance to prevent the full-blown disease.

In 2016, BreastCheck had an uptake rate of 74.7 per cent among women in the eligible age group. As a result, 986 cancers were spotted, in many cases leading to earlier intervention that has saved lives. As the National Screening Service noted, this success surpassed the programme standard of 70 per cent.

BowelScreen’s latest figures show how the programme is saving lives — to date, it has detected 718 cancers and removed almost 19,000 pre-cancerous growths.

However, fewer than 40 per cent of eligible people — 35 per cent of men and 45 per cent of women — have availed of BowelScreen in the most recent screening round.

Unfortunately, BowelScreen already has its own challenges. Research commissioned by the Irish Cancer Society and undertaken by Dr Nick Clarke in UCC found that fear and fatalistic beliefs about cancer are leading to many not taking up the offer of the free, simple, life-saving test. 

Through a survey of around 2,000 people who were eligible for the Tallaght pilot, BowelScreen found that almost one-in-four (24.3 per cent) believe that cancer is a ‘death sentence’.

However, there is hope. Just over 96 per cent of survey respondents believed that going to your doctor as quickly as possible increases your chance of surviving cancer.

The importance of primary care in restoring confidence in screening cannot be underestimated. The long-held personal relationships between GPs, nurses and their patients is invaluable in conveying such life-saving messages.

The relationship will be vital in informing women about upcoming changes to cervical screening. HPV DNA testing is set to replace liquid cytology this autumn, after HIQA’s 2017 Health Technology Assessment found that this test would reduce the number of screenings each woman has in her lifetime, while providing better accuracy in detecting precancerous abnormalities and early-stage invasive cervical cancer, although this test will also have false positive and false negative error rates.

While women will experience no change in how the cervical screening sample is collected, HPV DNA testing will lead to 20 per cent more pre-cancers detected, 30 per cent more cancers and mean screening moving from every three years to every five years for women who have had the HPV vaccine, which prevents seven-in-10 cases of cervical cancer.

If your patients have any specific concerns about CervicalCheck, please direct them to the CervicalCheck helpline on 1800 454555. Separately, the Irish Cancer Society is also here to help. We’ve updated our website with important information at cancer.ie/cervical-cancer-controversy, while cancer nurses are available to speak with the public through our Cancer Nurseline — 1800 200 700 (lines open Monday-Friday, 9am-5pm).

The inquiry into CervicalCheck will hopefully give the public a clearer picture of the mistakes, but also the successes, of our national cervical screening programme. This work, ongoing political debate, and the harrowing stories of women with cervical cancer and the families of those who died but who have since been tangled in this controversy will no doubt keep the issue in the public’s mind for many months, and perhaps years, to come. A long road is ahead if the national screening service has any hope of restoring public trust. But it is important to know that we can all play our part in ensuring as many lives as possible can be saved.

Dr Robert O’Connor is Head of Research at the Irish Cancer Society.

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Taking a closer look at therapeutic-use exemptions in Irish sport

Diabetes and asthma were the most common indications for approved therapeutic-use exemption (TUE) applications to Sport Ireland in 2017, according to data released to the Medical Independent (MI) following a Freedom of Information (FoI) request.

Last year, there were a total of 27 approved TUE applications, stated Sport Ireland’s Anti-Doping Annual Review 2017. This compared to 40 in 2016.

Five applications were incomplete at the end of 2017 and a further 49 were ‘not relevant’ (for reasons such as, the medication was used out of competition; the medication was not on the prohibited list; the application was for a threshold medicine where the athlete was below the threshold; the medication changed to an alternative; and the medication was given by a route not prohibited). The total number of applications (81) represented an increase of 10 on 2016.

A TUE allows an athlete to use a prohibited substance or method included on the World Anti-Doping Agency (WADA) Prohibited List, subject to certain defined conditions. Athletes can apply to Sport Ireland, or in the case of an international-level athlete, the international federation. The athlete must have “a well-documented medical condition supported by relevant and reliable medical data” for the TUE to be granted, according to Sport Ireland. The multi-specialty TUE Committee is chaired by Consultant Respiratory Physician Prof Sean Gaine.

Of the 27 TUEs approved by Sport Ireland in 2017, diabetes was the relevant indication in six instances.

The medications approved were insulin aspart in two cases; insulin detemir/insulin aspart in one case; and insulin glargine/insulin aspart in three cases.

Asthma was a relevant indication in five cases, including one combined case of asthma and rhinitis.

The medications approved were salbutamol, terbutaline, vilanterol in two cases, and vilanterol/terbutaline.

ADHD was the third-most common indication, representing three cases and involving the approval of methylphenidate.

Seven cases involved approval of a glucocorticoid, namely prednisolone in six instances, and fluticasone in one case. Glucocortioids were approved for a range of indications, including colitis, cerebral vasculitis and polymyalgia rheumatica.

Athletics and rugby

Last year, athletics and rugby accounted for the most TUEs granted by Sport Ireland — six in each sport. This was followed by shooting (three), rowing and cycling (two each). There was one application approved in relation to each of the following sports: Gaelic football, paralympic athletics, swimming, motorsport, equestrianism, triathlon, gymnastics and soccer.

Sport Ireland’s Anti-Doping Annual Review 2017 listed the numbers of TUE applications received and approved, but did not publish information on specific medications approved or relevant indications (this information was obtained under FoI, although not in a manner that could link the approved medications with a sporting category). Despite some calls for it to do so, Sport Ireland does not publish the names of athletes granted TUEs.

A spokesperson for Sport Ireland informed MI: “To confirm, TUEs are personal, medical records containing sensitive personal data, provided to Sport Ireland in confidence. Sport Ireland must ensure it respects certain privacy rights of the athlete. This assessment includes the possibility of singling-out and data-linking.

“This extends to the ability to single-out an individual from others by taking one or more pieces of information, which if viewed alone could relate to a number of individuals, but when linked together would narrow the scope of the individuals it would be applicable to and therefore identify them.”

Meanwhile, on the fact that valid and approved applications dropped from 2016, Dr Una May, Sport Ireland’s Director of Participation and Ethics, told MI there was “no clear or outstanding reason” for this.

Medical Council

Dr May also confirmed that work is ongoing on developing a memorandum of understanding (MoU) with the Medical Council, which would provide a formal mechanism to report concerns about the practice of registered doctors in respect of potential doping activity.

“The main purpose is about collaborating,” she said. “We feel very strongly about the importance of working in partnership and collaborating in sport. It is important to recognise it is not just the athlete [in terms of anti-doping]; oftentimes, there is more to what we see from a positive result and an adverse analytical finding — there is more to it than just an athlete taking something; sometimes there is somebody helping them to take that. So if we come across something, it would be appropriate that we share that information with the Medical Council. It has cropped up in the UK and a number of other countries, where it has been important to follow-up with the relevant medical authorities.

“Certainly, if we were to become aware of a doctor who was to be involved with doping, in some way, shape or form, we’d be very anxious to make sure the person is dealt with appropriately by the relevant medical authorities, as well as within sport… ”

Asked if Sport Ireland had, over recent years, any cause to contact the Council regarding a medical practitioner, Dr May said “no, we haven’t”.  In the absence of an MoU, she said, there would be “possible avenues” by which information could be forwarded to the Council if necessary.

“But the most appropriate way is to have a formal system in place for doing that, which fulfils totally any kind of criteria around data protection and everything else — that is what our vision is, that we have a strong system in place for doing it,” said outlined.

Dr May confirmed that Sport Ireland is working with the RCSI/RCPI Faculty of Sports and Exercise Medicine on developing ethical guidelines for medical practice in sport. This follows a Medical Council request to relevant medical bodies to produce specialty-specific ethical guides.

Last year, through the national testing programme, Sport Ireland conducted 989 tests of athletes. This included 318 blood tests and 671 urine tests. It undertook an additional 315 ‘user pays’ tests on behalf of 10 national and international organisations, marking an increase of 15 per cent on 2016. There was one positive finding from tests conducted last year and no further information on this has been released thus far. 

Supplements

Dr May advised that the issue of supplements “continues to be one of our bigger challenges”. In this respect, Sport Ireland has recently published a document titled Supplement use in Sport Guidelines.

According to Dr May, there has been an increase in the number of anti-doping rule violations globally that involve use of supplements, whether contaminated or otherwise.

She said Sport Ireland continues to work closely with the Food Safety Authority of Ireland (FSAI) and the Health Products Regulatory Authority (HPRA) on this matter. 

Last month, the FSAI announced it was recalling all Falcon Labs products due to the “presence of illegal steroids and stimulants that pose a serious health risk to consumers and also, as the location of the production site cannot be determined and traceability of the products is unknown”.

FSAI officers took possession of Falcon Labs products from food supplements and sports nutrition shops, gyms and online suppliers across the country. According to the FSAI, the products were sent to the State Laboratory for official testing for a range of illegal steroids and stimulants. The results showed that 1,3-Dimethylamylamine (1,3-DMAA) (also known as methylhexaneamine MHA) was detected in Falcon Labs Oxyburn Pro and Superclen products. Methasterone was detected in Falcon Labs’s Superdrive. According to the FSAI, 1,3-DMAA was not declared as an ingredient on any of the products and methasterone was misspelt on the label of the product in which it was detected. Nonetheless, neither substance is permitted in food.

The FSAI warned that 1,3-DMAA is a stimulant that can cause acute temporary increase in blood pressure, which may lead to shortness of breath, tightening of the chest and the risk of heart attack or cerebral haemorrhage. It was previously authorised as a nasal decongestant, but later withdrawn. Methasterone is anabolic-androgenic steroid which has been associated with a number of cases of liver injury. It has never been authorised as a medicine, but has been found previously on the black market under the name Superdrol.

There have been two publicly-reported rulings by Sport Ireland against athletes who tested positive for banned substances and who said they consumed Falcon Labs food supplements.

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A need to know: Getting ready for the new data protection law

The General Data Protection Regulation (GDPR) is a new EU regulation and, as such, will have a direct effect in all EU countries, including Ireland.

The GDPR has been written to reflect the increasingly digital climate in which organisations now operate. It aims to enhance the current data protection rules by introducing a number of additional data protection obligations on organisations, increasing rights for individuals and allowing them greater control over their own personal data.

The GDPR will apply to all individuals and organisations that have day-to-day responsibilities for data protection. All doctors should consider, therefore, how the GDPR will impact on their practice. 

The Data Protection Commissioner (DPC) has published guidance titled The GDPR and You. This sets out the key changes, although it is by no means an exhaustive document.

The DPC has also launched a GDPR-specific website with guidance for both individuals and organisations, raising awareness of their respective enhanced rights and responsibilities under the GDPR.

Accountability

The GDPR introduces the principle of accountability and makes this mandatory. In short, as well as ensuring GDPR compliance, organisations must now be able to demonstrate this compliance. Organisations must maintain accurate records of all their data processing activities, including the purpose for collecting and holding personal data, how it was obtained, how long it will be retained, the security measures in place, and how and why data may be shared with third parties. 

It will also be important to document all advice provided by the Data Protection Officer (DPO) and any risk assessments undertaken.

All staff should be aware of their individual responsibilities and it is important to keep a log of staff training.

Lawful basis for processing personal data

Organisations need to identify their lawful basis for processing patients’ personal data (such as their name, address and date of birth). There are six lawful bases, which include patient consent; processing is necessary for the performance of a contract or provision of a service; processing is in the organisation’s legitimate interests, except where such interests are overridden by the interests or fundamental rights and freedoms of the patient; and processing is necessary in the vital interests of the data subject.   

Under the GDPR, certain ‘special categories of personal data’ — including data concerning health — cannot be processed (eg, collected, stored, used, disclosed or destroyed), unless one of 10 conditions is met. Organisations therefore need to establish this special category condition and ensure this, and the legal basis for processing personal data, is communicated to patients.  The most relevant conditions are patient consent; and that processing is necessary for the purpose of preventative or occupational medicine, medical diagnosis or the provision of healthcare or treatment that is done by, or under the responsibility of, a professional who is subject to an obligation of professional secrecy.

Consent 

The GDPR sets a very high standard for consent in relation to the processing of personal data. If organisations are relying on consent as a lawful basis for processing personal data, they must ensure that it is freely given, specific and informed.  It should constitute an unambiguous indication of the patient’s wishes, by a clear affirmative action to the processing of his/her data. Pre-ticked boxes will not count as consent and there must be a positive opt-in process, separate from other terms and conditions. Organisations will be obliged to demonstrate that the patient has given their consent. There must be an easy way for a patient to withdraw their consent.

Transparency and fair processing

As has always been the case under data protection legislation, organisations have an obligation to inform patients what they are doing with their data. However, the GDPR will bring in more detailed and specific rules on providing such privacy information.

Privacy notices should be used to inform patients at the time of collecting their data. A variety of communication methods could be used, such as posters, leaflets, letters and information on the organisation’s website.

The GDPR places emphasis on the importance of privacy notices being easily accessible to patients, including children and vulnerable adults. Information within such notices should be concise, truthful and written in clear, straightforward language. If your organisation has non-English-speaking patients, then privacy notices should also be translated into other languages, as necessary. 

The following information must be provided to patients within privacy notices:

The data controller’s identity.

The Data Protection Officer’s contact details.

The purpose of the processing.

The lawful basis for processing.

The categories of personal data processed.

The potential recipients of personal data.

How long the data will be retained.

The security measures in place to protect their data.

A list of the data subject’s rights.

Any safeguards that will be used if data is to be transferred to a country outside the EU.

In addition, patients must be informed that they can complain to the DPC if they believe there is a problem with how their data is being handled.

Subject access requests

The time scale for compliance with a patient’s subject access request will be reduced from 40 days to one month. Organisations will no longer be able to charge for the provision of copies of records, unless the request is ‘manifestly excessive or unfounded’ or is repetitive in nature. In these exceptional circumstances, organisations may charge a ‘reasonable fee’ based on administrative costs. If organisations refuse a subject access request, they must tell the patient why they have done that and inform them they have a right to make a complaint to the DPC. 

If a subject access request is made electronically, or if the patient requests it, information should be provided to the patient in a commonly-used electronic format.

The DPC advises that if an organisation handles a large number of subject access requests, the impact of the change could be considerable. Organisations may wish to consider whether it is possible to develop a self-service system that allows an individual to have remote access to their information.

Data breaches

In the event of a data breach affecting a patient’s privacy rights (for example, a breach of confidentiality), data controllers will be required to notify the DPC ‘without undue delay’, and where feasible, no later than 72 hours after becoming aware of the breach. Organisations will also have to notify the patient of the breach if it is likely to result in a high risk to their privacy rights. This is in addition to the duty of candour to inform patients of such breaches, outlined in paragraph 67 of the Medical Council’s Ethical Guide.

The DPC will have the discretion and power to impose higher fines for data breaches, as well any other infringement of the GDPR.

DPIAs

Data Protection Impact Assessments (DPIAs) are recommended as a way of assessing the level of protection in place to safeguard patients’ personal data. Whilst considered good practice in any case, DPIAs will be legally required where the processing of personal data is likely to involve high risks to the confidentiality of individuals. They are likely to be required when organisations introduce new technology, for example a new computer system or a new system of sharing data.

Data Protection Officer

Certain organisations will be required to have a DPO, including public bodies and organisations that process special categories of personal data (including health data) on a large scale. The DPC has provided further clarification  in this regard.

The DPO should have expert knowledge of data protection and their role will include advising on and monitoring compliance with the GDPR, providing advice regarding DPIAs and acting as an intermediary for patients and also the DPC.

Patients’ rights

Individuals will be given stronger rights under the GDPR, including the right to rectification, the right to erasure, the right to object to processing, the right to restrict processing and the right to data portability. These rights are complex and not absolute. Organisations should ensure that they understand when they apply and have a process in place to deal with them, should patients wish to exercise them.

Where to obtain further information

The DPC’s GDPR-specific website has a number of resources that you may find helpful. It is likely that over the coming weeks, there may be further clarification of the legislation and you should check this website regularly. The DPC has produced a checklist for organisations to prepare for the GDPR, available under the ‘Resources’ heading of this website.

Healthcare professionals can also contact their medical defence organisation if they have any concerns.

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Patterns of presentation: Cancer diagnoses in EDs

Receiving a diagnosis as serious as cancer is never easy. However, ensuring the environment is appropriate for the diagnosis to be made and delivered is important for patients in order to start coming to terms with their condition and be properly informed about their future treatment plan.

One does not need to be a healthcare expert to know that a busy emergency department (ED) is not the ideal place to make such a sensitive diagnosis. This especially applies in the Irish health service, which has suffered from chronic ED overcrowding for more than a decade.

Another key point is that when cancer patients present at an ED, the cancer is invariably at an advanced stage. Therefore, the research into the subject conducted by the Irish Cancer Society and National Cancer Registry Ireland into cancers diagnosed as emergencies in Ireland each year, which was recently published, shines a spotlight on a neglected corner of the health service that is seldom discussed.

Main findings

According to the report, which examined patterns of emergency presentation of cancer in Ireland from 2002 to 2015, approximately 3,000 of the 22,000 invasive cancers diagnosed each year are diagnosed as emergencies. The figure does not include non-melanoma skin cancer. Overall, during 2010-2015, some 14 per cent of cancer cases presented as emergencies at the time of diagnosis. The report also compares Irish figures with those of the UK. It shows 16 per cent of all invasive cancers presented to EDs in the UK between 2006 and 2015. In Ireland, of the 24 individual cancer types examined, those with the highest proportion of emergency presentation during 2010-2015 were pancreatic; brain/central nervous system and liver cancers (all 34 per cent); leukaemia (27 per cent); ovarian (24 per cent); colon (22 per cent); and stomach cancers (21 per cent).

Demographics

For cancers presenting as emergencies, 30 per cent were in patients from the most deprived population quintile, compared with only 23 per cent for cancers presenting electively. According to the authors, cancer patients from the most deprived areas are 50 per cent more likely to be diagnosed via emergency presentation than those from the most affluent areas. There was also significant variation in relation to age. For cancers as a whole, 56 per cent of cases were diagnosed at ages 65 and over. However, for cancers presenting in EDs, 71 per cent were in patients aged over 65, compared with only 53 per cent for cancers presenting electively.

Expressed in a different way, cancer patients aged over 65 were twice as likely to present as emergencies (18 per cent) as patients under 65 (9 per cent). Age-related variation in emergency presentation likelihood was most marked for thyroid cancer (patients aged over 65 were 10 times more likely to present emergently than patients under 65) and least marked for multiple myeloma (no difference by age). Leukaemia was the only cancer group for which older patients were less likely to present in EDs.

Late presentation

One of the most concerning issues outlined in the report is that cancers presenting in EDs are invariably at a late stage. For cancers as a whole, about 58 per cent of known-stage cases were diagnosed at early stages (I or II), 42 per cent at later stages (III or IV). However, for cancers presenting in EDs, about 77 per cent were diagnosed at later stages, compared with only 38 per cent for cancers presenting electively. Stage-related variation in emergency presentation risk was most marked for breast cancer (late-stage cases 14 times more likely to present in ED than early-stage cases, adjusted for age) and least marked for pancreatic cancer (late-stage cases 1.3 times more likely to present in ED).

Positives

There are some positives to take from the report. Over the period 2002 to 2015, the overall proportion of cancers presenting emergently fell from 20 per cent to 14 per cent, the biggest decline occurring between 2005 (19 per cent) and 2009 (14 per cent), with little change subsequently. Of 24 cancer types examined, nine (colon, rectal, liver, pancreatic, breast, prostate, kidney, thyroid cancers and multiple myeloma) showed trends of significant decline in the proportion of cases presenting emergently over the whole period (2002-2015).

Only cancers of the brain/central nervous system showed any significant recent increase in emergency presentations (2009-2015, following a significant decline during 2005-2009, respectively).

Recommendations

The National Cancer Strategy 2017-2026 aims to reduce the proportion of cancers diagnosed in EDs by 50 per cent by 2026. In order to support this aim, and to achieve further reductions in emergency presentations, the document makes a number of recommendations for diagnoses to be made at an earlier stage. Chief among these is to allow GPs to have direct access to diagnostics at secondary care level. An Irish Cancer Society-commissioned report from 2016, Access to Diagnostics Used to Detect Cancer, highlighted that there were long delays for GPs accessing diagnostic tests for a suspected cancer; a lack of access to direct diagnostic tests; lack of community diagnostics; and a lack of access to rapid investigative tests for suspected cancer. Often, because of these problems, GPs are forced to send a patient directly to ED to access urgent diagnostic tests. The report also calls for the development of diagnostics in primary and community care settings and targeted public awareness campaigns on the signs and symptoms of cancer.

It also says that the development of a rapid-access pathway to treatment is necessary for people diagnosed in an ED, as is a significant incident case review for these patients. The report calls for further research to better understand the causes of emergency presentation.

Reaction

Speaking at the launch of the report, Director of the HSE National Cancer Control Programme (NCCP) Dr Jerome Coffey said the recommendations echo those contained in the national cancer strategy.

“I will commit to continuing the conversation between the [National] Cancer Control Programme and the [Irish] Cancer Society on sequencing and implementing these recommendations,” said Dr Coffey.

“If you look at the headline news, the headline news is that there has been progress. In 2005, presentations were at 20 per cent; by 2015, it was 14 per cent. We want to get down to 7 per cent. We want to get down from eight presentations to emergency departments per day, down to four in the lifetime of the strategy. That is doable; it is not too ambitious, it is appropriately ambitious.”

Dr Coffey said it is important to consider the biology of different cancers when it comes to emergency presentations.

“Cancers are different,” he said. “There is consistency in the numbers between this jurisdiction and our neighbours across the water. “So pancreatic cancer at early stage will present with obstructive jaundice or back pain. It is aggressive biologically. That does not mean the person has metastatic disease. It just means that this is a unique cancer. So some of the issues we are dealing with here are international issues.”

Dr Coffey said there is a need to consider regional factors.

“We need to take populations, go deeper into the data and look at the geography,” he stated.

“Which parts of the country are seeing more emergency presentations? Where are we seeing all the lung cancer presentations? We need to support GPs even more. We have had guideline referrals on our website for a number of years, we have electronic referrals, that is all done, so when we come back and look at this data again in a couple of years, we want to make sure there is a full impact from the work that has been done and the work that has only started this year.”

He said the funding released as part of the cancer strategy will support the implementation of the recommendations.

Dr Coffey concluded by saying the report is the most valuable public health initiative he has seen for some time.

“This fits with the cancer strategy, it fits with Sláintecare, it fits with other countries who may have started this project,” noted Dr Coffey.

“So it is great to have national data on an international issue. A lot of projects I get involved in, the first thing that’s asked is, ‘where is the data?’ Here, we are starting with the data, that is a huge step forward; it is a huge competitive advantage.”

Also speaking at the launch, Director of the National Cancer Registry Ireland Prof Kerri Clough-Gorr said the report was an example of what can be achieved through collaboration.

“What I want to focus on is partnership,” said Prof Clough-Gorr. “We can do more when we do partnerships like this. We are delighted to be involved in this type of research because it brings all of us forward. We are delighted to work with the National Cancer Control Programme, because with our funding from the Department of Health, together we can do a lot more for patients.

“We are all chasing the same goal here. We all want the best possible cancer patient experience. And when we come together for reports like this, we are able to see where more work needs to go, where policy needs to be focused. We can work with the National Cancer Control Programme to get at those targets. Our data is the basis of all that… when we do it together, we do it much better.”

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