A recent event aimed at exploring the implications of Sláintecare for neurological care highlighted some startling facts and strong opinions about the state of neurological services in Ireland, writes Priscilla Lynch
The key to improving neurological services in Ireland are full implementation of Sláintecare, better integration of community and hospital services, but not necessarily a lot of new acute beds, a recent event in Dublin heard. The half-day event, ‘Delivering the vision of Sláintecare through neurological care services’ was organised by the Neurological Alliance of Ireland (NAI) in collaboration with the HSE National Clinical Programme for Neurology.
It focused on neurological care services as key drivers of many of the principles that underlie Sláintecare reform, including promoting integrated care, encouraging a shift to ongoing care in the community, and better management of chronic disease.
In her opening speech to attendees, NAI Director Ms Mags Rogers said that “neurological care continues to be at the forefront of promoting multidisciplinary management of chronic conditions, advancing the role of clinical nurse specialists and nurse- and GP-led clinics and working with the voluntary sector in developing self-management and other long-term supports in the community”.
The event featured presentations on four neurology projects, in epilepsy, multiple sclerosis and headache, funded under the Sláintecare Integration Fund in 2019. They were intended to represent Sláintecare principles operating in practice by delivering an integrated, community-based approach to chronic long-term conditions.
There was also a lively stakeholder panel debate on how neurological services can benefit from the Sláintecare model, and what the current deficits in services are.
Dr Colin Doherty, Consultant Neurologist and Honorary Senior Lecturer in Neurology at St James’s Hospital in Dublin, provided an update on the state of epilepsy care in Ireland and the development of the national epilepsy electronic patient record (EPR).
Approximately 40,000 citizens in Ireland have epilepsy, of whom 15,000 are poorly controlled and access a lot of hospital-based care, and there are over 100 epilepsy-related deaths annually.
There are approximately 7,000 epilepsy-related emergency department (ED) admissions (2 per cent) annually, and the average length of stay is 3.4 days, which averages-out at 30,000 bed days/year.
“So it is a significant burden of care,” Dr Doherty said, commending the HSE for setting up the National Clinical Programme for Epilepsy in 2010 at a time of health budget cuts.
He outlined the development of the electronic care record for epilepsy, which now has about 9,000 patients signed-up, the majority of whom are complex patients, and also detailed the progress being made in St James’s in helping well-established epilepsy patients better self-manage their disease, through offering virtual clinics and online/phone support services so they rarely have to physically attend the hospital. “For people who choose to do that, it has been very successful,” he commented.
There is also an established care pathway for the ED in St James’s for patients presenting with seizures, which has resulted in improved discharges, Dr Doherty said, citing supportive data that showed a slow, steady decline in ED admissions for this cohort since 2014 in the hospital.
“That goes against everything we’re told about the pressure on EDs and demographics — that more and more beds are needed. That is certainly not true for us. We want to stop patients coming in who don’t need to be in and key to that is providing early access to care.”
However, despite this success, vulnerable and marginalised patient populations with epilepsy remain a challenge. These include the intellectually disabled and people who are homeless, incarcerated or have addictions. The prevalence of epilepsy in this cohort is eight times the rest of the population and the risk of death due to epilepsy is 5/100, compared to 1/1,000. The majority (78 per cent) of those with epilepsy who die from a seizure in Ireland have no antiepileptic drugs in their system, Dr Doherty pointed out, quoting Health Research Board data.
Most of the homeless/incarcerated with epilepsy are men aged between 40-to-50 years with a lot of comorbid addiction, with many on psychotropic drugs, so they are complex to care for, Dr Doherty explained. He outlined the success of a project to help better improve care for these patients and reduce their attendance at EDs, which included the development of a seizure pro-forma that can be used by outreach health services like SafetyNet to help assess and manage these patients better. Once filled-in, the referring service receives a prompt same-day reply from the St James’s epilepsy team on how to manage the patient, and whether they need to attend hospital.
In addition, for epilepsy patients with intellectual disability who find it particularly stressful to attend hospital settings, outreach clinics have been set-up in independent intellectual disability service providers Cheeverstown and Stewarts Care centres in Dublin. About 160 of these patients have had their data uploaded to the EPR and they are now seen in a setting that is familiar to them, which is calm, and where they have better support and don’t have long waits. The Sláintecare fund has allowed the hiring of additional staff to support this service.
Project Lead with the Neurorehabilitation Network Demonstrator Project, Ms Edina O’Driscoll, highlighted the lack of neurorehabilitation services in Ireland, the increasing demand for these services, excessive waiting times and the fact that hospital data is not correctly capturing who needs neurorehabilitation, thus delayed discharge figures are incorrect.
An audit of eight hospitals identified 110 patients as being delayed in acute hospital secondary care due to lack of access to neurorehabilitation services. Only 18 per cent were recorded on the HSE’s delayed discharge report. “If we apply that percentage to a national reported figure of 66, the numbers of people delayed in acute hospital due to lack of access to neurorehabilitation could be close to 400.”
Over half (56 per cent) of those delayed waiting for neurorehabilitation are in the 18-to-64 age group with diagnoses of stroke, acquired brain injury and spinal cord injury. This group, on the day of data collection, had collectively accumulated 18,121 days in hospital, she reported.
Ms O’Driscoll then referenced the Implementation Framework for the Neurorehabilitation Strategy, which was launched in February 2019. The overarching aim is development of neurorehabilitation services nationally to improve patient outcomes, with services being configured into population-based managed clinical rehabilitation networks.
She said the framework urgently needed to be progressed, and noted how currently, services are very disjointed and operate in silos, with lack of communication, absence of national pathways, and repeating of patient histories among the key issues. Under the networks, patients will be able to move from one service to another seamlessly, with one integrated patient record. Ms O’Driscoll detailed how it will work, using the example from the demonstrator project, which will see the development of inpatient and community-based neurorehabilitation services across Community Healthcare Organisation 6 and 7.
In addition, the funding of better community services and home care packages will free-up hospital beds in the acute sector, she said.
Responding to Ms O’Driscoll’s presentation, Dr Doherty was very critical of the poor usage of beds for some neurology patients, with many being forced to stay in acute hospitals for excessive amounts of time due to no community beds/supports or rehabilitation places. He said there should “not be a penny more for new beds in the acute sector until we sort out these ridiculous issues”.
“The issues about beds in the health space are an absolute joke. The problem with acknowledging that we do need more beds is that we also need to use the ones we have better….stop saying ‘we need more beds’ — we don’t. We need much more rehab beds and other options for patients, and we also need to stop saying ‘less complex’ care. It’s not. It’s much more complex.” He also voiced frustration at the volume of patients presenting with headaches and migraines to EDs, when only a minority of such patients need further investigation and/or admission.
Dr Doherty said most of these patients would be much better managed by other, community-based services, as was demonstrated in an earlier presentation about the Sláintecare Integration Fund self-care in headache pilot involving four neurology centres, community pharmacists and the Migraine Association of Ireland.
Also speaking from the floor and during the panel debate, Prof Orla Hardiman, HSE National Clinical Lead for Neurology and Consultant Neurologist, Beaumont Hospital, Dublin, agreed with Dr Doherty’s points, adding “it feels like groundhog day”. Prof Hardiman said it was well known what was needed to reform the health system.
“I’ve been saying these things since 2001, when I was dealing with Micheál Martin [then Minister for Health]”, and that it was disgraceful that patients who finished rehabilitation treatment often had to return to acute hospitals as there was no suitable community services for them, she said.
Prof Hardiman also maintained that current HSE waiting list measurement systems do not give a realistic picture of the ‘real’ problems in the health system. She said some hospitals are seen to be managing their lists and EDs well by getting patients in and out quickly, when in fact the “quality of services is shocking. It’s appalling”.
“The standard we provide [in some hospitals] is vastly inferior now compared to when they were the worst ones at managing trolley numbers. So trolley counts are not a good measure of the quality of services we provide for our patients,” she maintained.
Prof Hardiman also voiced her support for the implementation of Sláintecare and the benefits it could bring for neurology services, but added she did not believe the political will was currently there to roll it out.
For more information on the event and neurology issues, see www.nai.ie.