Joint Committee on Health debate -
Wednesday, 8 May 2019

Services for those Living with a Neurological Condition: Discussion

Chairman

This morning the committee is meeting with representatives from the Neurological Alliance of Ireland, the HSE, the Disabilities Federation of Ireland and Alcohol Forum to hear their insights into services for those living with a neurological condition and the problems they may encounter in being provided with those services. On behalf of the committee, I welcome, from the Neurological Society of Ireland, Ms Edina O'Driscoll, project manager of the neurorehabilitation demonstrator project and Ms Magdalen Rogers, executive director of the society. I also welcome, from the Disability Federation of Ireland, Ms Joanna McCarthy, senior executive, policy and research and Ms Ava Battles, chief executive of Multiple Sclerosis Ireland. I also welcome, from Alcohol Forum, Dr. Helen McMonagle, specialist care co-ordinator in alcohol-related brain injury and Ms Paula Leonard, national lead on community action and alcohol programme. They are all welcome.

I draw witnesses' attention to the fact that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by the Chairman to cease giving evidence on a particular matter and they continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. I also advise them that any submissions or opening statements they have made to the committee will be published on its website after this meeting. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official either by name or in such a way as to make him or her identifiable.

I ask Ms Rogers to make her opening statement.

Ms Magdalen Rogers

I thank the Chairman and members for including the issue of services for people with neurological conditions in their work plan and for providing the opportunity to speak on this theme this morning. I would like to introduce Ms Edina O'Driscoll, project manager for the neurorehabilitation demonstrator project. She is here in a voluntary capacity at our invitation in order to address any queries on this project which I will mention in the course of my statement.

Over 800,000 Irish people are living with neurological conditions, ranging from common conditions such as migraine, dementia and epilepsy to rare neurological disease, with approximately 40,000 additional people diagnosed each year. The Neurological Alliance of Ireland, NAI, is the national advocacy group for neurological care, representing over 30 patient organisations. We work closely with the Disability Federation of Ireland in promoting recognition of the need for community supports for people living with neurological conditions and the vital role played by voluntary organisations, including MS Ireland, in providing these services.

I wish to briefly highlight an issue which I do not have sufficient time to deal with in detail but which continues to impact significantly on people with neurological conditions, including multiple sclerosis, MS. I refer to access to medicines. The NAI supports the call by the Medical Research Charities Group and the Irish Platform for Patient Organisations, Science and Industry for the development and implementation of a national strategy on access to new and innovative medicines. The remainder of my statement will focus on the specific challenges in accessing neurology and neurorehabilitation services and call for investment in a series of specific projects which the NAI believes could make a significantly positive impact.

Neurorehabilitation services are critical to support recovery and prevent disability for people with neurological conditions. The ongoing lack of access to specialist rehabilitation continues to have a devastating impact on individuals and their families, resulting in unnecessary disability and impinging on the precious potential for recovery. Ireland has less than half of the specialist inpatient beds needed for its population and community-based services are totally underdeveloped, with only three community healthcare organisations, CHOs, having dedicated, but still only partially staffed, community neurorehabilitation teams.

A three-year implementation framework for the 2011 national policy and strategy for neurorehabilitation services was finally published by the HSE in February. While implementation of this framework is included as a key action within the Sláintecare implementation plan, this will be impossible without dedicated funding. A critical starting point is the need for investment in the neurorehabilitation demonstrator project. This project is an innovative collaboration between acute hospitals, the National Rehabilitation Hospital, the Royal Hospital Donnybrook, Peamount Healthcare, local voluntary providers and primary care to develop a managed clinical rehabilitation network which will improve access to specialist neurorehabilitation for people in CHO areas 6 and 7. This is not just about introducing a new service, this pilot project is fully in line with the aims of Sláintecare to provide an integrated approach to the management of chronic neurological conditions, reducing length of stay in acute hospitals, saving bed days and most importantly, ensuring that people receive the right care in the right place when they need it.

I want to move on to a series of proposed projects to address the challenges in neurology services. The neurology clinical programme recognises that over 20,000 patients are awaiting neurological evaluation, of whom at least 30% suffer from headache. Headache represents the second most frequent condition presenting to acute medical assessment units. In response to this, and in collaboration with the Irish Pharmacy Union and the Migraine Association of Ireland, the neurology programme has developed a new pathway of care that will expedite headache management to a community-focused model in an innovative, quality driven and cost-effective way in line with the aims of Sláintecare. The neurology programme also recognises that many neurological diseases are rare, requiring national centres of expertise. Therefore, an innovative, agile and sustainable management plan has been developed using motor neurone disease as a model, that integrates care across the hospital community and capitalises on the expertise of the voluntary sector to provide high-quality, evidence-based, streamlined care for patients from diagnosis to end of life.

Finally, the neurology programme recognises the importance of providing evidence-based, disease-modifying treatments in a cost-effective manner for neurological disease. The programme is developing an evidence-based treatment pathway for multiple sclerosis that can be replicated for other neurological diseases for which new, highly effective but costly treatments are anticipated.

The NAI is calling for investment in the initiatives outlined as a key opportunity to begin to address the huge challenges faced by people living with neurological conditions. All the proposals are fully costed and ready for implementation. Detailed descriptions have already been circulated to the committee or are available on request. The NAI wishes to stress that a commitment to ongoing investment in neurology and neurorehabilitation services needs to be a key part of any future programme for Government. We look forward to working with the committee in shaping future policy.

Dr. Helen McMonagle

We are very grateful for the invitation to address the committee and represent the needs of two groups of people, namely those individuals and families affected by a spectrum of neurocognitive disorders known as alcohol-related brain injury, ARBI, and those impacted upon by a collection of neurodevelopmental disorders widely referred to as foetal alcohol spectrum disorder. I am joined by my colleague, Ms Paula Leonard, from the Alcohol Forum. Ours is a national charity that provides support, information and services to people, families and communities impacted upon by alcohol harm. I am Dr. Helen McMonagle, and I am speaking in the first instance in my capacity as a rehabilitation co-ordinator for people affected by a condition that is largely excluded in many national dialogues regarding alcohol, disability and neurorehabilitation in Ireland.

ARBI is a brain injury that is acquired as a result of the toxic effect of alcohol on the brain and the nutritional deficiencies and malnutrition that often accompany this pattern of alcohol use. Over the past seven years of providing support in respect of this condition, I have seen, at first hand, the devastating range of brain-based difficulties that result from ARBI, including difficulties with memory, attention, planning, reasoning and judgment, all of which interfere with a person's ability to lead an independent life. ARBI prevents people from overcoming problems with addiction and exposes them to a range of personal and social vulnerabilities, including risks to their health, safety and personal well-being. This perfect storm of addiction and reduced cognitive capabilities, alongside poor identification rates, results in a vicious cycle of repeated hospital admissions and worsening prognoses for those affected. Four recent reports - the intercollegiate report from the Royal College of Psychiatrists, General Practitioners, Physicians and Neurologists of England and Northern Ireland and reports from the Scottish Executive, Public Health Wales and the Welsh Government - highlight the growing concerns surrounding the increasing numbers of men and women in their 40s, 50s and 60s developing this brain injury as a result of alcohol use, and calls for support services to be urgently developed to meet their rehabilitative needs. Our local research, which we submitted to the committee, and our ongoing work to support people in the CHO 1 area, continue to highlight the health service limbo in which these individuals exist. This condition belongs to no one HSE directorate. It is a condition for which there is no leadership, strategic planning or care pathway for in our country. This is very difficult to comprehend when a recent review of the numbers shows that this condition has had a €6 million burden in three acute hospitals in the CHO 1 area over the last five years. It has been shown internationally to contribute significantly to the burden of dementia, particularly early onset dementia, a large portion of the homeless population, and affects between 0.4% and 2.8% of the general population. One person in eight is dependent on alcohol.

The committee must know that people with ARBI have no natural advocates. They will not self-present to their GPs, local Deputies or the media in order to highlight the inequity that exists for this condition. There is no professional group taking the baton and speaking on their behalf.

Our work with local services in Donegal mirrors the findings of many other sites internationally, namely, that providing targeted supports in this area results in better outcomes for people affected and a reduction in the cost burden relating to the condition. Having just one case co-ordinator, a local care pathway and a willingness among local services to work with people with the condition in the county, we have freed up the equivalent of one bed in our local hospital for two and a half years, or 939 fewer bed days. In cost terms, Letterkenny University Hospital has spent €850,000 less than Sligo University Hospital and €700,000 less than Cavan General Hospital responding to this condition in the past five years.

We know that the detrimental impact of this condition extends beyond the people of Donegal and is a problem across the whole island of Ireland. I am here today to make one request, namely, that this committee mirror the efforts of the Scottish Government and Welsh Government in this area and the intercollegiate efforts elsewhere in the United Kingdom. We ask members to support the establishment of a national working group to scope the needs of this population in an Irish context and deliver recommendations and a strategy to this committee as to the best way to respond to the growing needs of the cohort of affected persons. Without that scrutiny and oversight, my fear is that people with ARBI will continue to perish in silence, being passed from pillar to post and with each service director refusing to take responsibility for the problem, as millions are spent on ineffective delayed discharges at an acute level. We know from international work that it does not have to be like this. Challenging and initiating change in respect of this issue is a win-win for everybody involved. We hope the committee will give our request due consideration in proportion to the scale of the problem we face.

Chairman

I thank Dr. McMonagle and invite Ms Leonard to make her opening statement.

Ms Paula Leonard

I am here to speak about one of the most stigmatised of all health issues. It is important to state at the outset that no mother intends to cause harm to her child and that foetal alcohol spectrum disorders, FASDs, are not the result of an uncaring act. There are complex reasons that women drink during pregnancy and I hope we will return to them later in the discussion. Prenatal alcohol exposure is the leading cause of preventable intellectual disability in the world. More children are born every year with FASD than are born with autism spectrum disorder, spina bifida, cerebral palsy, Down's syndrome and sudden infant death syndrome combined. FASDs are brain-based impairments resulting from prenatal alcohol exposure. Alcohol has been documented as a toxic teratogenic substance for more than 40 years. It passes freely through the placenta during pregnancy and results in a range of learning and neurological disabilities, behavioural deficits, difficulties with regulation of mood and behaviour, cognitive deficits and impaired executive functioning.

As outlined on page 3 of our submission, people with FASD are at an increased risk of a range of difficulties across their lifespan. More than half will serve jail sentences or be confined in drug treatment or psychiatric facilities as adults. The prison experience for people with FASD must be understood within a context. Many of them have difficulties with impulse control, an inability to learn from punishment and discipline and difficulty understanding and adhering to rules. Some 92% of people with FASD will receive a secondary formal mental health diagnosis. Although FASDs are permanent, diagnosis, early intervention and support have been proven to mitigate associated risks, including poor mental health, addiction and suicide. Early diagnosis can help to identify other associated health conditions. In fact, 428 co-occurring conditions have been identified across 127 studies of children affected by prenatal alcohol exposure, including epilepsy, heart defects, compromised auditory function and compromised immune system.

In an international review conducted last year, Ireland was featured as one of five countries with the highest prevalence of foetal alcohol syndrome, FAS. The latter is at the most severe end of the FASD spectrum, with the greatest alcohol effects, including physical malformations. It is estimated that 600 babies are born with FAS in Ireland each year and that 40,000 people are living with the condition.

The numbers of those affected by FASDs, ranging in nature from mild to severe, could be ten times that figure because international evidence indicates that for every case of FAS, there are at least ten cases of FASD.

We are delighted to be here in the context of a review of neurological supports and services in Ireland. The World Health Organization, WHO, recommends action to deal with neurological disorders associated with the consumption of toxic compounds, including alcohol. A number of recommendations to this committee are made and shown on page 4 of our submission. The key recommendation is for clear clinical guidelines on the diagnosis of FASD to be developed and agreed. The development and adoption of clear diagnostic criteria will assist clinicians in the assignment of more accurate diagnoses of FASD and pave the way to more widespread early intervention, improved prevention efforts and cost savings.

Dr. Joanne McCarthy

I thank the committee for the opportunity to discuss neurorehabilitation services. I am familiar with many members so I will not go into too much detail on the Disability Federation of Ireland, DFI. We are an umbrella organisation that supports over 120 disability organisations and works with many others. We provide information, training, networking, advocacy and representation, research and policy development and organisational development.

I will start by asking if we know who we are talking about when we refer to the disabled. According to census 2016, 13.5% of the population, or 643,131 people, identify as having at least one disability. One in four of those acquire a disability at working age, meaning that most of them are likely to be already in work, married or living in their own homes in their communities. Once the onset of disability occurs, timely access to neurorehabilitation services will directly impact on a person's life and family so we fully endorse the NAI's call for greater investment in neurological and neurorehabilitation services. However, DFI can only do half the job alone because most people with disabilities will continue to live in their own homes and communities. They may have a short-term intervention in the form of acute services but they will return to their communities and, unless we invest in a solid community services programme that supports them and their families to live and navigate the world with their neurological condition, we will be putting money in false places.

We also need to ask what the disability spend is achieving. We currently spend €1.9 billion on disability, health and personal social services in Ireland. In 2019, 85% of the HSE disability budget supports over 8,500 people through a range of residential supports and for 27,000 people in day places. We are not questioning the need for these individuals to receive that support. However, a small cohort of the disability population is soaking up a large amount of the disability spend. These figures reinforce a report compiled as part of the value-for-money and policy review of disability services for the Department of Health. Less than 10% of funding is directed towards community services programmes such as personal assistants, respite, day services and other services, areas where the neurorehabilitation services are involved.

Community services and supports are mostly co-funded by a range of disability organisations. Ms Battles will give members a good sense of what that means. Many of these are condition-specific and help individuals and families to navigate the diagnosis and develop strategies for self-management and for access to a range of services such as acute and primary care services, housing services, social welfare services and local education and training services which they need to retrain or reskill to enable them to return to work. We fully support the call for acute neurorehabilitation services but we also call for a better understanding of, and investment in, a range of specific community services.

They include home supports, family supports and health and well-being services which Ms Battles will go through further.

Ms Ava Battles

The Multiple Sclerosis Society of Ireland was established in 1961. In the 58 years since its foundation its mission has evolved to support people with multiple sclerosis, MS, in the rapidly changing therapeutic, social, political and economic environment. It is the only national organisation that provides information, support and advocacy services for the MS community. Our mission is to enable and empower people affected by MS to live the life of their choice to their full potential.

We receive 52% of our funding from the State and 48% through fundraising initiatives. We are very cognisant of the lack of neurorehabilitation services available to people with MS and a wide range of other neurological conditions. We are also very aware that MS and other progressive neurological conditions can have both physical and psychological consequences which may have an enormous long-term impact on almost every aspect of the daily lives of those affected. Being aware of this and obviously everything Ms Rogers and Dr. McCarthy said, we believe that, as a voluntary organisation, we have a variety of creative and dynamic ways to mitigate the deficits mentioned. I would like to take the joint committee through two or three of them.

One is our exercise related activity programmes that are run in the community. As Dr. McCarthy said, most people come back out and live in their community after their diagnosis. When we won "Tesco charity of the year" a number of years ago, the money was put into a research project with the University of Limerick's physiotherapy department. The results of the research clearly demonstrated that, to effect change in an MS population, physical activity needed to be delivered with frequency and intensity to maintain the change. The results also showed that when people stopped, they returned to a baseline, or often worsened. We know from the research that a person with MS will probably, if he or she is lucky to receive it because it is provided on an ad hoc basis, receive one hour's worth of physiotherapy from the State in his or her local community. That is if he or she can get out of his or her home and travel to the physiotherapy class, or even get into it because a lot of the places in which classes are being run are not accessible. We know that we have an issue in that regard.

We provide around €200,000 of fundraised income a year for the provision and delivery of physiotherapy and exercise-related programmes. In 2018, 1,802 people accessed the programmes in the Twenty-six Counties. The delivery of the programmes is supported by the Department of Employment Affairs and Social Protection. Therefore, what we have are community employment programmes, as part of which we have people participating in a back-to-work programme training to become physiotherapy assistants. The physiotherapist makes the assessment of a person in the community and the trained physiotherapy assistants will go out to him or her on a weekly basis for the physiotherapy class. It is someone who may not be able to get out of his or her house because he or she does not have transport from his or her rural location into the community or he or she may feel he or she is not able to do so because of fatigue. Our physiotherapy assistants will go to the house and we know from the research that it is not only the actual physical activity that improves a person's mental and physical health but also the interaction with others and the social engagement with them. The physiotherapy programmes came from the initial research programme and are being delivered throughout the country. We have continued the relationship with the University of Limerick and developed two new evidence-based programmes with the focus on prevention. They are being run with funding we have received where funding is restricted to research initiatives.

The first programme about which I would like to tell the committee is Step it Up. It is a physiotherapy-led exercise and education programme designed to improve symptoms through knowledge, exercise participation and coaching. It has primarily been designed for people who are inactive, have minimal walking problems and been relatively recently diagnosed with the condition. Its central aim is to encourage participants to address and plan for their physical activity needs. Let us put it into reality. Let us take someone called Mary, a 24 year old female nurse. She has received a diagnosis of MS and is struggling to maintain her daily activity levels in her work. As she is finding it really difficult, she comes to our community worker for an assessment. The reality for her is that she is just about able to work during the week and when she comes home in the evening, she has to go to bed. She is exhausted and needs the weekend to recover. She is referred to one of our Step it Up programmes.

Based on a 12-week programme, she is now running with her dog and, as of last week, she was running up a hill. This is real. We can spout statistics all we want but I wanted to try to make it real for members. Mary is a person who is now no longer concerned about not being able to work and she is no longer considering retiring at 27. She is actively participating in and contributing to society and paying her taxes and she now has better quality of life.

The other programme, Better Balance, is a physiotherapy-led exercise and education programme designed to improve balance and reduce falls. It is suited to those who have recently experienced a fall or who are afraid of falling. It does not apply only to people with MS but it is obviously related. Its central aim is to encourage the self-reflection of participants in their daily lives to avoid falls. A 44 year old female who has retired from her employment due to multiple sclerosis had fallen three times in a two-year period and had three fractures. She has not fallen in the past 12 weeks and is now going back out and socialising. One must look at it from her point of view, that is, the point of view of someone who is 44 and retired. These programmes are enabling her to participate in her community and increasing her quality of life.

We have taken all the research I have mentioned in respect of the two programmes and turned it into an Activity Matters programme, which is available on a website. One can avail of it in one’s own home, as long as one has an Internet connection.

Senator John Dolan

Moving swiftly along.

Ms Ava Battles

It enables participants to be more active and participate in their community. Again, it is about us, as an organisation, trying to ascertain the needs of those on the ground and develop programmes that actually work for people when they are back in the community.

Let me mention two other programmes. We have a 12-bed respite facility that operates in Dublin. People come to it from all over the country. It is not only a place where a person can get an MS NCT but it also presents an opportunity for carers who are looking after individuals with MS daily to get a break while the latter stay with us for five, seven or 12 nights.

With regard to working collaboratively with other organisations, we work with RehabCare in the west. Unfortunately, it is only in the west. The HSE provides funding to RehabCare for people with cognitive rehabilitation needs. They come to us and meet our community worker and we identify their cognitive issues. They are then referred to the RehabCare cognitive programme and receive an assessment. They engage in a 12-week programme. Again, the programme improves the quality of life for people with MS in the community.

As an organisation that provides services to people in the community, we support 100% the recommendations of the NAI and the DFI to this committee today.

Dr. Joanne McCarthy

Any of the representatives of our fellow organisations who are sitting patiently in the Gallery today could tell similar stories, including in respect of migraine and acquired brain injury. They also run community-based programmes that facilitate people and support them in keeping healthy.

The DFI continues to endorse the calls from the NAI but we have two specific points. First, we are seeking to secure a multi-annual investment programme, worth €200 million over a five-year period, to bed down community-based resources and infrastructure that support people to continue to live with conditions in their homes and as best they can in their communities.

We want members to commit to the development of a strategy for community services and supports that brings coherence to this work and joins it up with the neurorehabilitation strategy, the value-for-money programme and the primary care strategy. It should result in coherence so those conditions can experience seamless passage in and out of services. We are asking members to endorse that. We are reminding them that there more than 600,000 people with disabilities depend on these types of services, not on residential services or day services. One in four of us today will probably end up depending on these types of services. We are asking members to commit to supporting the development of the services those with disabilities need on a daily basis.

Chairman

I thank Dr. McCarthy and Ms Battles. Members will now make contributions. The first is Deputy Margaret Murphy O’Mahony.

Deputy Margaret Murphy O'Mahony

I welcome all the witnesses this morning and thank their organisations for the wonderful, Trojan work they do.

I also acknowledge that all of our guests are female. I do not think I have ever attended a committee meeting with a full panel of female representatives - go, girls. It is great to see all of them.

The World Health Organization has stated providing adequate services to help people with neurological conditions is one of the greatest challenges facing public health systems. While we are concentrating only on the Irish system, it must be acknowledged that it is a worldwide problem, for want of a better word. Was a representative of the HSE invited to attend the meeting?

Chairman

I mentioned that in my introduction, but I do not think so.

Senator John Dolan

Is Ms O'Driscoll attending in a personal capacity?

Ms Edina O'Driscoll

I am attending as project manager for the neurorehabilitation demonstrator project.

Senator John Dolan

Ms O'Driscoll does, however, have a connection with the HSE.

Ms Edina O'Driscoll

Yes, but I am not representing the HSE.

Senator John Dolan

That clarifies the matter.

Deputy Margaret Murphy O'Mahony

In many cases, a group of representatives such as this is preaching to the converted. In the future, when such a group appears before the committee, it would be good if there was somebody who could follow up on the points raised and work on them. It is a lesson for us.

Chairman

I am sure the HSE is following proceedings, but we can send a transcript to it and request comments.

Deputy Margaret Murphy O'Mahony

Yes, to say hello.

Ms Magdalen Rogers

That is particularly important because we are bringing forward a series of proposed initiatives and it would be useful to know the status of the decision-making.

Deputy Margaret Murphy O'Mahony

Yes, I agree. In the southern part of Ireland there is no dedicated specialist medical rehabilitation service for people with neurological conditions. Unfortunately, most matters in life are Dublin-centred, but in the case of something as important as this, it is disappointing that there is nothing available in the south of the country. What is needed in the south of the country? I had expected a representative of the HSE to attend, whom I had intended to ask what it was going to do about it. Perhaps our guests could answer the question in a few sentences. If they had a magic wand, what would they provide that is required in the south of the country?

Ms Magdalen Rogers

As the Deputy will be aware, a long-standing recommendation of the Neurological Alliance is the provision of a specialist rehabilitation centre. Cork contains the second national neuroscience and neurosurgical centre. The national neurorehabilitation strategy makes a number of recommendations for the development of specialist neurorehabilitation facilities to bring Ireland up to the minimum standard for the number of specialist beds it should have. We recommend and endorse providing such a facility. The number of beds, their location and so on need to be decided operationally and in conjunction with the roll-out of the national trauma strategy.

Deputy Margaret Murphy O'Mahony

The location could be Cork.

Ms Magdalen Rogers

The need for such a centre is very clear, as it has been for some time.

Ms Edina O'Driscoll

The neurorehabilitation strategy outlines a requirement for 60 specialist inpatient beds per million of population and a community neurorehabilitation team per community healthcare organisation in areas which have a population of approximately 500,000.

Dr. Helen McMonagle

There are several recommendations made in a number of the intercollegiate reports which have been completed. Best practice around the world cites the need for a specialist transitional unit in the community to facilitate early hospital discharge and free up beds at an acute level. When people with ARBI receive specialist rehabilitation treatment, their long-term prognosis and outcomes are far better than if they receive rehabilitation treatment in a more generalist setting.

Deputy Margaret Murphy O'Mahony

Our guests will be aware of the chronic lack of investment in these services across the board.

We have only half of the recommended number of specialist rehabilitation beds for a population of Ireland's size. We also have the lowest number of consultants in rehabilitation medicine in Europe, which, again, is very disappointing.

I have a few questions for the representatives of the Alcohol Forum. While I am very familiar with the other organisations represented and have worked with them, I am not as familiar with the Alcohol Forum. Reading through the submission it sent to the committee, it is very disappointing to note the lack of experience in the area of assessment and the associated stigma. I note that 80% of people affected are missed diagnostically. Will the forum's representatives expand on this? In this day and age, I cannot believe there is still stigma attached to the condition.

Dr. Helen McMonagle

Absolutely. It is not specific to Ireland, rather it seems to be the case internationally. It is only in the last ten years that research in this area has spiked, given the increased number of people coming through with the condition. We know from a recent research paper published by the Care Services Improvement Partnership in the United Kingdom that there is a lack of diagnostic expertise and training to diagnose an alcohol-related brain injury among core professional groups. The paper also set out that professionals often stigmatised patients and failed to see an underlying brain injury because they believed challenging behaviours or individual difficulties were due to individuals' alcohol use. Professionals failed to recognise that it might be the result of a brain injury and to question whether something other than alcohol use might be going on with someone. The consistent absence of resources in this area in Ireland does not incentivise professionals to identify the condition. If it is identified, what does the professional do with the person who has it? There is a great deal we could do to increase the identification rate and adopt best practice in the management of this condition. We need to build expertise in the recognition and management of this group not only in addiction services but also in acute services. There should be routine screening of cognition and malnutrition among long-term heavy users of alcohol. That would help greatly to improve identification rates. It should be spurred on by the fact that the prognosis for the condition is very good if identified early enough. Over 25% of people can make a full recovery, while a further 25% can make a partial recovery and another 25% can make a significant recovery.

Deputy Margaret Murphy O'Mahony

Has a population needs analysis been carried out as part of Sláintecare?

Dr. Helen McMonagle

We have undertaken local research to determine the prevalence of the condition in the north-west region of Ireland. We looked first at the number of hospital admissions for ARBI between 2005 and 2009. We reviewed the numbers again for the period 2012 to 2016. Between 2005 and 2009 there were 92 admissions for ARBI at Letterkenny University Hospital and 71 at Sligo University Hospital.

Deputy Margaret Murphy O'Mahony

Was this under Sláintecare?

Dr. Helen McMonagle

Yes. When we reviewed the numbers for the period 2012 to 2016, we observed a 63% increase in the number of admissions for ARBI in Letterkenny University Hospital and an increase of 121% in the number of admissions in Sligo University Hospital.

Chairman

We started the meeting late this morning and have to vacate the room by 1.45 p.m. As there are eight members who want to contribute, I ask speakers to put one or two pertinent questions and allow answers to be given. In that way we can allow everyone to contribute while keeping within the time available. I apologise for the pressure on time. The committee members contributing are Senator Rose Conway-Walsh who is stepping in for Deputy Louise O'Reilly, Senator Colm Burke, Senator John Dolan, Deputy Bernard Durkan and Deputy Kate O'Connell. We will then bring in non-members. To give everyone an opportunity to contribute, speakers should be concise.

Senator Rose Conway-Walsh

I will be concise. There are 16 neurologists in the country.

Ms Magdalen Rogers

We are at 34 at this stage.

Senator Rose Conway-Walsh

How many should we have?

Ms Magdalen Rogers

We should have 68.

Senator Rose Conway-Walsh

If it were based on the EU figures, it should be 89.6.

Essentially we have a real problem with a shortage of neurologists and the waiting lists are completely unacceptable. I welcome the strategy. However, we can have all the strategies and plans we want but if we do not have enough neurologists, then the waiting lists will continue to increase. Will new neurology posts be created?

Was Ms Rogers surprised that the capacity of the new National Rehabilitation Hospital will not be increased to meet the waiting lists?

Do the organisations support an inquiry into the foetal valproate syndrome scandal? Are the organisations active in demanding that inquiry from the Minister? Recently, the British Medical Journal concluded the evidence of the risks of congenital malformations in women exposed to valproate was clear as far back as 1990. The risks of this drug were beyond all doubt from 2005 but it continued to be prescribed to women in pregnancy.

Do the organisations know when a decision will be made on Spinraza? The availability of such new drugs would feed into these services by cutting down on the amount and cost of care for neurodegenerative disorders.

Ms Magdalen Rogers

The number of consultant neurologists is well below the number we require. We would constantly highlight the need for recruitment. In 2015, the Neurological Alliance of Ireland carried out an audit of neurology services in the neurology clinical programme. The results still stand. In fact, they have worsened if anything. We found that none of the 11 neurology centres had a full multidisciplinary team, even the national neuroscience centres in Cork and Dublin.

Depending on the neurology service, it is a patchwork solution to see more people without putting the personnel required in place. An increase in the number of neurologists is critically needed. These conditions will grow as the population ages. We are not going to see a decline in the number of people with neurological diseases but an increase. To deal with early diagnosis and intervention, we will need the people on the ground and not just neurologists but also members of the multidisciplinary teams.

Senator Rose Conway-Walsh

Will Ms Rogers comment on capacity of the new National Rehabilitation Hospital not being increased to meet the waiting lists?

Ms Magdalen Rogers

The recommendations of the neurorehabilitation strategy in terms of the development of neurorehabilitation centres and whether all facilities would need to be located on the one site needs to be factored into the decision. There is no doubt in the strategy that additional beds are needed.

The roll-out of the national trauma plan will influence where those beds are installed. There is a question as to whether all of the beds need to be on the same site but there is no doubt that the National Rehabilitation Hospital, NRH, needs additional capacity.

Senator Rose Conway-Walsh

An opportunity was missed there.

Ms Edina O'Driscoll

May I say one thing about that? The development of the NRH site is a phased development plan. Phase 1 is the replacement beds, phase 2 will see additional therapy spaces moving over and phase 3 will be for additional capacity.

Senator Rose Conway-Walsh

Will that be additional beds?

Ms Edina O'Driscoll

That is the proposal.

Senator Rose Conway-Walsh

When will phase 3 happen?

Ms Edina O'Driscoll

I cannot answer that. It is in the pipeline and is being advanced at the moment.

Senator Rose Conway-Walsh

What about valproate?

Ms Ava Battles

Before we deal with that topic, I want to reiterate what Ms Rogers said about the multidisciplinary team. A person needs an early diagnosis and that is vital. However, I reiterate that such a person will go back into the community and will need the multidisciplinary approach which includes occupational therapists, physiotherapists, speech and language therapists and neuropsychologists. Neurologists were like hen's teeth when I started working in the sector and now we have 34. That is great but it is ridiculous that somebody might wait a year to get a diagnosis. There is much that can happen to somebody's underlying condition in a year.

I will reference the issue about access to medicines. I will not speak specifically about Spinraza but I want to reference the issue of access to medicines. We believe that people should have access to the right treatment at the right time. There is a body of international evidence to show that people should be diagnosed early and treated appropriately. In Ireland, we have an issue with access to new medications. Someone who was diagnosed with multiple sclerosis, MS, 20 years ago would have been sent home, told to rest and given nothing. Thankfully, neurologists now have a suite of 15 or 16 disease-modifying therapies at their disposal but new medications are coming on-stream all the time. The difficulty is that people cannot access them because they are not getting through the current system. I reiterate what Ms Rogers said earlier about the Medical Research Charities Group and the Irish Platform for Patients Organisations, Science and Industry stressing that we need to look at how that system is currently not working and how people get access to it. The important thing is to keep people well, participating and contributing to society because the more we do that, the better it is for everybody. I wanted to make those comments.

Chairman

I want to talk about valproate and Spinraza before we move on to Professor Burke. I mean Senator Colm Burke.

Senator Colm Burke

I thank the Chairman for the promotion.

Ms Ava Battles

I am not trying to avoid answering that question but, as an organisation which works with people who have multiple sclerosis, we will not comment on the inquiry that is currently ongoing into valproate. I know representatives from Epilepsy Ireland are in the room.

Senator Rose Conway-Walsh

The problem is that there is not an inquiry.

Ms Ava Battles

Yes.

Senator Rose Conway-Walsh

All the agencies and organisations that are represented here have a role in keeping the pressure on because a real injustice was done when it comes to valproate. It has been proven in France and cases are going through the system in that jurisdiction which will likely be settled within a number of weeks. I also mentioned earlier the conclusions of the British Medical Journal so the issue is not unique to Ireland. People who have been affected and their families need to know who knew what and when.

Dr. Joanne McCarthy

One of the strongest advocates of the Disability Federation of Ireland, DFI, is sitting in the Gallery. DFI has been supporting the work of that advocate to push for exactly what the Senator has mentioned.

Senator Rose Conway-Walsh

I ask the DFI to continue that.

Ms Paula Leonard

In principle, as members of the DFI, we would support anything that would address whether people had proper medical advice or were given the right guidance at the right time both before and during pregnancy. It is important to understand that alcohol fits within the family of known teratogens and, in that context, we need one very clear message. We need clinical guidelines established and an unequivocal message, from the top right down to GPs, as to the teratogenic properties of alcohol. It has been considered a teratogen since 1996 and is also considered carcinogenic. We also know it is a neurotoxin as was demonstrated by Dr. McGonagle's presentation on the development of brain injury.

For the families who have been impacted, it is important that there be clarity, consensus and openness. We need to know the numbers impacted and have recognition of that.

Senator Colm Burke

I thank everyone for their powerful presentations. I refer to foetal alcohol spectrum disorder and the issue of information. I spoke recently to a front-line worker in the health service who had been dealing for three months with a pregnant patient diagnosed as having cocaine in her system. We are not only talking about alcohol only but a combination of alcohol and drugs. A figure of 600 cases annually was given. Are figures available from hospitals to show if the problem is greater in particular areas? Is enough being done to get information out about consuming alcohol during pregnancy? Abuse of alcohol is a major issue. As we speak, approximately 2,000 of those occupying hospital beds are there for reasons directly related to excessive consumption of alcohol. Is enough being done to educate people on this issue or is a more intense campaign needed?

On individual hospitals, some years ago, at least ten babies in the care of the Rotunda Hospital on any one day were suffering from withdrawal symptoms following birth. Has that figure increased in real terms in the past ten years? Such an increase would mean that our information systems are not working at a local or national level. What must be done to highlight the risks associated with the consumption of alcohol during pregnancy? How can that be factored into healthcare information programmes? Can more be done in this regard? Has any similar programme been shown to work in other countries?

Ms Paula Leonard

On other programmes that have been shown to work, there is an acceptance at a global level that prevention on its own is not adequate to address issues in relation to foetal alcohol spectrum disorders. It is necessary to have a long-term strategy for the provision of supports, services and diagnostics to families who are impacted by prenatal alcohol exposure. That said, there is a role for prevention and many forward steps have been taken in that area. Levels of foetal alcohol spectrum disorder in a population are linked to population level consumption. On the positive side, the Public Health (Alcohol) Act has been introduced and the HSE has established a clinical working group on foetal alcohol spectrum disorder and appointed a clinical lead. This group and the lead specialist have clearly marked out that the areas they will cover are prevention, education and population level messages. That is very welcome and the DFI is happy it is happening. In addition, through the Department of Health, an additional seven drug liaison midwives will be appointed under the national drugs strategy to work with women who have issues with alcohol addiction and support them in moving towards alcohol-free pregnancies.

While much has been done in this area, we have not yet reached a point where the policy and medical areas have one clear message. At an international level, the World Health Organization says that no amount of alcohol intake during pregnancy can be considered safe, there is no safe trimester in which one might drink alcohol, all forms of alcohol pose a similar risk and binge drinking poses a dose-related risk. We should all be concerned that binge drinking is very much the signifier of how people in this country drink.

Population level consumption was going down over a number of years but binge drinking continued to be the norm.

While we would welcome all of the developments I have mentioned, it is important that we do not just view this in the narrow space of prevention. There will always be women who continue to drink during pregnancy. The European Birth Mother Network is a group of mothers with children who have been impacted by foetal alcohol spectrum disorders, FASDs. The network is clear that there is a complex mix of reasons for women drinking during pregnancy, for example, childhood trauma, addiction and knowing people who drank during pregnancy and whose children were okay. Not every alcohol exposed pregnancy will result in a child with an FASD. These are important messages. Another reason for prevention alone being a major challenge is that women may often not know that they are pregnant until they are five, six, seven or eight weeks into their pregnancies and the foetus may be exposed to alcohol during that period.

There are a range of reasons that we must approach this issue in a no stigma, no shame and no blame way and we must understand that it is complex. We need prevention and a clear message from our medical community but we will also need supports and services, which can only follow on from diagnostics. That is why we are asking committee members to use whatever access and influence they have to support the call for the development of clear diagnostic criteria for foetal alcohol syndrome, FAS, and FASD.

Senator Colm Burke

Another complex issue is the combination of alcohol and drugs.

Ms Paula Leonard

Yes.

Senator Colm Burke

Are there figures on how that issue has changed in, for example, the past 15 years? Has there been a large increase? What has been the percentage increase?

Ms Paula Leonard

In terms of an evidence base, the bottom line is we do not know. The figures that I have supplied at this meeting and in our submission have been extrapolated from international studies that used population level data and where the relevant figures were known. Studies have examined drinking rates in Ireland and the number of women who have self-reported drinking during pregnancy and extrapolated from those figures. It is likely that the figures in Ireland are higher. From addiction services, we know that the number of people who are presenting with more than one addiction, for example, alcohol plus drugs, is increasing in Ireland. This must be addressed in policy and services.

Senator John Dolan

I am delighted that the six witnesses are before us. Their evidence challenges us in a number of ways. I look forward to reading the transcript. We may need to re-examine the issue. Much has been raised at this meeting that we cannot get into in this session alone - prevention, different service mixes, who provides what, impacts on lives, etc. I will leave that there, though.

I will start with Dr. McCarthy's presentation. She stated that 85% of the €1.9 billion for disability services was expended on residential day services and respite. Those types of services go back to old God's time when we did not have diagnostics, we tried to put people in caring places and we did not have much else going on. I would be interested in short responses to my question. Do we have the wrong ratios in disability services funding? While I am not suggesting that the services and supports receiving the 85% of funding are not needed, only 15% is being spent on supports that are located in the community even though it was pointed out that many people return to and try to survive in their communities. This is particularly the case for the cohort we are discussing today, namely, people with neurological conditions.

How might Sláintecare be part of the proposed solutions? Is it lacking in this regard or does it have potential?

I thank Ms Rogers for her presentation on behalf of the NAI. The national policy and strategy for neurological services was published in 2011 but the implementation plan relating to it was only published in February. What has been the loss of progress in those eight years of not having an implementation plan? Such a plan will never provide the billions required to address all of the issues but, in my view, producing strategies without timely implementation plans for the same year is wrong. A strategy or policy without an implementation plan is akin to providing pain relief. It is a three-card trick.

The impact of medicines was mentioned. One of our guests stated that, dating back over 20 years or so, there was not a lot in terms of medicines to give to people. I know from meeting people who suffer with MS that the lack of medicine in the early 80s made life pretty grim for them, which impacted greatly on their families. The same applies in regard to other neurological conditions. How has the development of medicines that can modify conditions impacted on people's daily lives and what is needed to further increase that impact?

I welcome the presentations on ARBI and FASD. Dr. McGonagle mentioned that identification of ARBI is poor and referenced data relating to Letterkenny, Sligo and Cavan. We hear a lot about continued waste in the health services. I am not too sure that when they speak about such waste, people are referring to the effects of misdiagnosis. Rather, they are speaking about items being thrown out or not used properly.

The recommendations put forward in the presentations are interesting in that they are not financial asks but calls for inquiries into what is being done for the thousands of people who suffer with conditions from which they are many knock-on effects, including for their families. The recommendations are a plea to us, as a committee, to do what we can to improve services in this area.

Dr. Joanne McCarthy

I am always really conscious that in providing data one is splitting a sector into those who have and those who have not. That is not the intention.

I needed people to see the starkness of the inequity in accessing disability services in Ireland.

There was a question about whether we had the wrong models of support. Without a doubt, this would have been mentioned in our policy review in the context of value for money. Looking at what is expected of us under the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, of course, we have the wrong mix of services. People with disabilities and their families should be confident that they can receive services as close as possible to their local community. This resonates with what we are talking about with respect to neurorehabilitation services. The services should be as individual as possible. It is no surprise that there has been no real increase in personal assistant and respite care services; such services facilitate a person in living in the community.

There is also the issue arising from the lack of demographic evidence to support the case for transitioning to a new model of service. That is what is being attempted in decongregation and supporting new models of day services. The evidence is available and people know the data and what they are talking about. It can be planned. It is very hard to speak about a new model of service with community services infrastructure when there is no demographic evidence to show what the need will be time and again to support the planning process. That is required to give confidence to the planners and those who will deliver the service, as well as those who will depend on it.

The member is correct that we could rewrite a service model for people with disabilities as it is not fit for purpose. People need to live at home or independently, or at least as close to communities as possible. The process must be person-centred and there should be a mix or range of personally driven services such as personal assistants and home supports. We also spoke about episodic health interventions that were required. The process needs to move beyond health, as it is only the enabler. Health services should be available to enable people to access services provided by other Departments and agencies. Education services should be delivered through the education and training boards, for example, and there should be support to deliver them in a mainstream way as much as possible. Social welfare and housing services are all mainstream services, but we need a health service that has resources and provides supports such as personal assistant hours that are fit for purpose and which can support people in accessing mainstream services. We need to reinvent our understanding of the role of health bodies and look more at the personal social services side of health services in order to invest in them.

Chairman

Senator Dolan asked whether we had got the ratio wrong.

Senator John Dolan

I also mentioned Sláintecare.

Dr. Joanne McCarthy

I have dealt with that issue. Sláintecare is very silent on disability services. It speaks to the new neurorehabilitation strategy, but otherwise it is very silent on disability services, although there may be one or two references to them. We are looking for an interface. People with disabilities are heavy users of the health system. They are the people who are presenting with neurological issues and availing of acute services. They are people with acquired brain injury and in relapse. They are heavy users of core health systems. They are also using neurorehabilitation services through primary care services and accessing personal assistants and home supports. They draw across the health system, but they are dealt with individually through each siloed part of the HSE. Sláintecare looks for joined-up services and we want to have them "disability-proofed". How can we enable these models of service? Ms Battles could probably give a better example, but the majority of services could be delivered within a much softer community-based infrastructure such as the resources and supports for self-management provided at community level. There are times, with a peak in the condition, when access to primary care services is required, but there are also times, especially at the time of diagnosis, when more acute services have a role to play in intervention. Equally, it is critical to have fluidity in step-down services. Sometimes there is silence in Sláintecare in understanding the population and how it uses the health service. That is something on which we probably need to work.

Ms Magdalen Rogers

The neurological lines are particularly supportive of the neurorehabilitation demonstrator project, as I outlined in my statement, because we see it as joining the various parts in order that the acute service providers, the acute hospitals and the existing rehabilitation units, all the way through to primary care and voluntary service providers, are all involved in one network. It is a practical project that is Sláintecare on the ground. It is fulfilling its ethos, something for which we were looking. It is happening, which is why we are calling for funding for the project. It fulfils that remit and is the magic formula for integration across hospitals and the community for people who are living long term with the condition.

Ms Ava Battles

I will address two of Senator Dolan's points, the first of which was about the lack of progress in the past eight years and the fact that we had the reports but were only just coming up with an implementation plan. From my perspective, the loss has been the increase in the level of disability because people have not had access to services. It has meant a decrease in their quality of life and resulted in young people living in nursing homes. My colleague referred to silos in the HSE not having conversations with each other. One budget will not result in a person being given a home care package, but we will put a 42 year old man with three children into a nursing home to provide him with care for the rest of his life. It is about having seamless services that put the person at the centre of service delivery and developing services around the person to meet his or her needs to stay well and in the community. That brings us back to Sláintecare's ethos. The lack of progress has been huge for us and everybody involved.

The Senator asked about the impact of medicines. When medicines are being discussed, one often finds that the only ones that will be mentioned on radio are the ones that will give a person another few days or weeks of life. There are very few discussions about how medicines improve a person's quality of life. If one asks people with MS - I can only speak about this specifically - they say the fact that there are new medicines brings huge hope. That is what people need; they need access to medicines that will keep them well. If I was to say to all of the committee members present that they would not make it to the bathroom, we would all be very embarrassed. It is something we take for granted because we can just get up and walk out to go to the bathroom. For some people, however, a new medication can make all the difference and enable them to make it to the bathroom. It means that they are no longer afraid to leave the house. They can socialise and work. It goes back to the points made about people making a contribution to society and having a better quality of life. I would broaden it from access to medicines to access to all treatments across the board as being vitally important. Sláintecare looks at it from the point of view of keeping people well and the self-management piece in the community, but we need to put resources behind it. There is no point in producing a lovely report and then leaving it on the shelf because it will not benefit anybody.

Ms Paula Leonard

I come at Senator Dolan's observations from a slightly different angle. With alcohol related brain injury and foetal alcohol spectrum disorders, FASD, we can demonstrate from the evidence that by providing for early intervention and supports for families affected by the conditions there are huge potential cost savings to the State. Canada is considered to be one of the global leaders when it comes to prevention, treatment and support in dealing with foetal alcohol spectrum disorders. The Canadian Federal Government has estimated that it costs taxpayers the equivalent of €1.2 million extra - Canadian $1.75 million - for every person who is born prenatally alcohol exposed, but that huge cost savings can be made through early intervention, diagnosis and support services across a person's life span. Reference was made to waste in the health system. Wasted resources in dealing with foetal alcohol spectrum disorders span the range of systems, including, for example, trying to address the issue of drop-outs in the education system and the cost to the justice system of somebody being incarcerated and jailed simply because they did not receive the right support or advocacy services within the system. It is in terms of social and health supports such as not diagnosing or understanding the conditions and comorbidities.

The Senator is correct that our asks are related to our approach, understanding and acceptance that these are significant public health issues.

Our policy position on the development of diagnostics is informed by the families impacted on by foetal alcohol spectrum disorders. Two years ago we supported families to form an alliance to end the neurological developmental disorder prenatal alcohol exposure, PAE. When I asked those families about their one ask at today’s proceedings, they all stated it was about looking for clear diagnostic guidelines. They point out that nothing can happen until we at least understand what is happening with children. They can then become advocates for the provision of transitional places in schools and so forth. There will be a budget, but it will be a spend-to-save approach if it is done properly.

Deputy Bernard J. Durkan

I apologise for my late arrival, but I had another engagement. While I only caught the tail-end of the presentations, I am familiar with the subject matter under discussion.

How can we improve the public information programme on all of the issues with which the organisations are dealing? We hear about various conditions and how matters have progressed to the extent that it is not possible to deal with them in the way that it is sought to deal with them. There is space for a serious public information programme based on facts, rather than scaring the public, to make it aware of the issues in question. How do the organisations see such a programme being put into operation?

The Sláintecare report addressed the question of diagnostics. From their experience, are the organisations satisfied that its proposals are adequate?

New neurological conditions such as Guillain–Barré syndrome appeared to have been difficult to diagnose until recently. Rare conditions seem to present more regularly than anticipated. As a result, diagnosis was slow, which was to the detriment of the patient. The delay in diagnosis could have been two to six months, meaning that patients and their families suffered considerable stress.

Ms Magdalen Rogers

Is the Deputy’s question on a public information campaign about the alcohol issue or others?

Deputy Bernard J. Durkan

Yes. It is about all other issues where information is important such as on how to deal with situations which arise in the public arena.

Ms Paula Leonard

On information campaigns, significant progress is being made in the alcohol piece. We have the Ask about Alcohol campaign which includes radio, TV and web content. It is the only WHO accepted website in Ireland which includes public information on alcohol. We have the working group which is limited to the HSE. In any other forward movement we would be in agreement with the WHO guidelines which state one needs to have the involvement of people and their families impacted on by the condition to know how to deal with it sensitively. It is important to acknowledge what is being done well.

The other challenge in dealing with foetal alcohol spectrum disorders is in the medical community, including obstetrics and gynaecology and GPs. We suffered for many years because there were some equivocal messages coming through.

We are moving much closer to an unequivocal message. I understand that the HSE is collaborating with a number of people to put together a position paper. I hope we will have something over the next number of months to ensure the medical community sings from the same hymn sheet on that issue. We welcome what is being done in this regard and we do not seek anything additional. I do not know how it relates to other conditions, however.

Ms Ava Battles

Each of the individual neurological organisations tries to create awareness about specific conditions. For example, we recently had the MS Ireland MSunderstood café roadshow. People only knew they were entering a coffee shop but they were able to experience some of the symptoms of living with MS. The minute people came in the door, they felt unbalanced by the uneven floor. When they ordered their latte or whatever, the writing on the menu board started to blur to give them the sensation of having blurred vision. People with MS have informed us that when they are diagnosed, they often do not know what the disease is and their families certainly do not know what is. Family members of an MS sufferer tend to perceive it as an older person condition and assume the person with the condition will end up in a wheelchair. There is a need to increase awareness.

GPs were mentioned. People with MS now visit colleges to address medical students training to become our doctors and nurses and talk to them about what it is like to experience the condition to give them a better sense of that. There is much more public patient involvement taking place, which is important.

There is unity in working together. In that context, we work with the DFI and the NAI in the context of the campaigns they run to try to create awareness among the general population about neurological conditions in general. Many people do not have a sense of these conditions unless they have come to his or her door. People have no idea about the rare diseases the Deputy mentioned. We try to work with the DFI and the NAI to create awareness among the general population.

Ms Magdalen Rogers

The promotion of awareness of neurological conditions through national campaigns is under-resourced. It is an under-recognised strength of individual charities, like MS Ireland and others, that they take on and do this work. They fund-raise because no one else is doing so. It is a huge responsibility on not-for-profit organisations to take on this education and awareness role.

Dr. Joanne McCarthy

It is becoming increasingly difficult to secure funding to do this sort of work. I spoke earlier about the 85% of HSE funding that is going into disability services. Of the other 15%, approximately 10% - or much of it - relates to information and advocacy work to help raise awareness of particular conditions and the similarities across conditions. However, the HSE, the funder in question, is increasingly stating that funding awareness campaigns is not its business and its role is to fund core disability services. The part of the HSE that helps promotion does not consider disability to be part of its responsibility because disability is done through the disability or neurological arms of the organisation.

Valuing the knowledge base of all of these organisations, their link with Europe and the information services they provide to families in crisis at any particular point and having that embedded in a real funding stream can make a significant difference to the lives of individuals and families in the community. I thank Deputy Durkan for raising the matter because the value of the role played by the various organisations is underappreciated and nobody wants to fund that role. It is something we must look at.

Deputy Kate O'Connell

I apologise for my late arrival. I had another engagement. I will briefly touch on the valproate issue. I am a pharmacist by profession and have been dispensing valproate for years. We talk about awareness of the side effects and when they happened and so on. In terms of where we go from here, women with epilepsy who want to have a baby have an additional requirement for folic acid. It is all very well complaining about the past - as a pharmacist, I understand people's issues - but the focus should surely be on proper folic acid supplementation to mitigate against any of the side effects of medications that women often must take to keep them seizure free and maintain their pregnancies.

Folic acid is something I feel particularly strongly about, not only in relation to neurological conditions. There is additional need for higher strength folic acid. It depends on weight but I understand the current practice is 5 mg, 20 times the dose. That is not commonly known. That message must be delivered through GPs and community pharmacists because when it comes to access the community pharmacist generally knows first when someone is pregnant because pharmacists sell the pregnancy test. I have done some work with my party on having folic acid placed beside pregnancy tests. I have also done the sums on the cost of providing folic acid free of charge and have looked at what is done in other countries. There are some things that we cannot change now but we can protect population health in the future with proper folic acid supplementation. If anyone here is doing work on this, I ask that he or she address the issue.

One of the witnesses spoke about access to medication. I agree that the focus of the system is on quality-adjusted life years, QALYs, which determine whether one takes X, Y or Z tablet. When Orkambi was being approved it was widely noted that it was not only an issue of curing a condition or living longer but also what the increase in lung function could mean for somebody. That discussion has started and it is not as cold and clinical as it used to be. There is a way to go on this but the message should go out that whereas Orkambi did not go through the system or tick the boxes, a dispensation was made because of the particularly high rate of cystic fibrosis in Ireland. Advocates put their names out publicly and showed what the small increase in lung function gave them in terms of quality of life.

It may have been discussed before I arrived but there is an issue with rapid neurological disorders such as motor neurone disease and some of the rapid cycling types of MS, for which home care packages kick in at 65 years. Motor neurone disease is often a younger person's condition affecting some patients in their mid-40s. It does not matter what a person's means are or if he or she is a billionaire. People with a condition such as motor neurone disease require a medical card because they require access to services. The witnesses know this. It is very concerning that individuals, including some who do not have family members, who are faced with the burden of this very frightening condition and a bundle of paperwork may be told that they cannot access services because they are below 65 years and have a condition that is sometimes associated with older people. Have any of the witnesses or the organisations they represent done any work we could present to the Minister for Health showing how we could make it easier for people in such desperate circumstances to access services, home care packages and the grants they require to convert their homes as their condition progresses. Many people who have rapid progressing conditions want to live in their own homes. Sadly, I have often dealt with people who have died before they have had the appropriate adaptations made to their homes. I would be interested to hear of any work on this or any proposals the organisations may have put to the Minister on it as it may be something that could be easily fixed. No doctor will sign off on something that says a patient has a rapid progressing neurological disorder unless the patient has it. I cannot see why GPs must certify and there is so much rigmarole when a definitive diagnosis has been made of a serious neurological disorder.

I sit on the Committee of Public Accounts. Recently the Environmental Protection Agency was before the committee on water quality. I referred to a National Geographic report on the high level of drugs, illicit and otherwise, found in the water supply in some cities.

Last week it was reported that all the shrimp in Suffolk - I do not know if anyone else has read about the shrimp in Suffolk - have tested positive for cocaine. By the looks of things, the excretion of illicit substances into our water supply is becoming a huge issue. We talk here about people taking alcohol and other drugs consciously in pregnancy, but are the witnesses aware of any work or studies on increases in neurological disorders or conditions among neonates in this regard? Is there any link between this and water quality? Is any of the witnesses' organisations undertaking a body of work in this regard? I have been waiting for three weeks for a reply from the EPA regarding the work it is doing on this. Perhaps someone within the witnesses' fields is doing work on the very clear carcinogenic, teratogenic and neurotoxic effects of illicit substances, or perhaps it is only me thinking about these matters.

Ms Magdalen Rogers

To respond to Deputy O'Connell's comment on folic acid, and this goes back to the comment we made in response to Deputy Durkan about the voluntary organisations taking up the mantle on this, I am aware that one of our members, Spina Bifida Hydrocephalus Ireland, has been doing work on promoting the use of folic acid, for obvious reasons. That is one organisation that is stepping up its preventative approach.

Deputy Kate O'Connell

Regarding women suffering from epilepsy, though, it just seems so logical that there would be a very obvious campaign through GPs and pharmacies. It is not known about. One does not hear it discussed. Perhaps the Chairman will have a different view, but people are not aware of this.

Ms Ava Battles

I will pick Deputy O'Connell up on that. I understand her point and I will answer generally. The issue is not known about. The Deputy talks about the need for a campaign, but who will pay for it? From our point of view, as an organisation representing those affected by MS, we could talk about the importance of taking vitamin D, for example. Again, though, we are trying to provide a range of services, we are fundraising to provide those services and then there needs to be an awareness campaign. There is the difficulty as to who will provide the funding for the awareness campaign the Deputy speaks about and how we resource getting the GPs and the pharmacists to take on board what we say. Now one has to pay an external company to get one's leaflet into a GP surgery. I do not disagree with what the Deputy says; I am just asking how we could manage to do it when we already have to try to provide a service directly to people.

The Deputy also mentioned Orkambi and the discussion surrounding it not being as clinical and cold as it used to be. I agree with her from the point of view of the fact that in the National Centre for Pharmacoeconomics process one can now make what we call a patient submission. This is very positive and very welcomed by our community in that we are not just down to a quality-adjusted life year valued at €44,000. What in the name of God does that mean to anyone? From our perspective, therefore, the fact that we can make representations on behalf of the people who will be using these drugs is very positive.

To respond to the Deputy's point about the medical card, yes, it is absolutely ridiculous that people who have been diagnosed with a condition and who already have to get their head around any such diagnosis, no matter what the condition is, sometimes have to fight for their medication, for access to whatever it is that would make their lives better. I cannot say anything to the Deputy other than that it is ridiculous and it should not be that way. People should have access to whatever it is they need for-----

Deputy Kate O'Connell

While we are giving out, is it Ms Battles' view that this is causing unnecessary pain as more-----

Ms Ava Battles

Of course - 100%.

Ms Magdalen Rogers

I would have a query as to when the problems arise because, whatever about signing someone off as needing a home care package, it is then a question of funding and-----

Deputy Kate O'Connell

Yes. That comes up. It really matters to people whose condition is rapidly deteriorating.

Ms Magdalen Rogers

Yes.

Deputy Kate O'Connell

They never get to spend their home care packages as sometimes they are gone before they are able to do so.

Ms Magdalen Rogers

The Deputy made the point that any medical practitioner would be very willing to sign off on a person as needing a home care package, but there is a chasm between this and actual delivery of the package.

Deputy Kate O'Connell

It really is beyond me how the neurologist, who will have to diagnose a condition, and the GP cannot tick the box on this.

Dr. Joanne McCarthy

We are often aware that many of the organisations, especially the neurological ones, pick up the slack.

When I first joined the sector a long time ago, I was briefed by the Irish Motor Neurone Disease Association. The association knows that in any one year there are about 400 people diagnosed in different stages of the condition. The association provides family support, aids and appliances and it steps into the space that Deputy O'Connell is talking about. We know that model. I do not know whether the Deputy was present when we spoke about the need for establishing a community services programme. The community services programme would provide a service at the point of diagnosis or at the point of presentation. Such a service would be able to respond to the immediate needs of the person in his or her home or as close to that person's home as possible and bring in, exactly as the Deputy suggests, GPs, physiotherapists, primary care and would co-ordinate in a sustained way all the actors that will help the person to live as long as possible with a good quality of life. One would also activate the housing adaptation so that the person would be able to negotiate that new world because post diagnosis. I can only imagine the sense of bewilderment and how an individual or family is trying to deal with the diagnosis and at the same time advocate, and access resources. There is a need for this service.

Ms Ava Battles

To be fair, that is what the community and voluntary sector do best. If one takes the example of Epilepsy Ireland, or MS Ireland, those organisations work with the person in the community. Where most individuals would have no idea how to go about filling in a grant application, the community worker has filled out at least 50 of them and knows exactly what one has to do to ensure that the application is granted. They work with people who have been diagnosed, whether from a psychological point of view, whether the individual needs counselling or physiotherapy and they are signposting to the HSE and engaging with the various different organisations.

Dr. Joanne McCarthy

Geography will determine an individual's access to services. One could have four or five very good organisations working locally and an individual will experience his or her condition in a different way from somebody who is diagnosed in a rural area who has no access to resources.

When we talk about developing the community services programme, it is so there is an understanding of a shared plan and basket of services to which each individual is entitled once diagnosed with a condition or disability and living in the community. It should not matter whether one is living in CHO 1 or CHO 9, a person should have the same access to services.

Chairman

I invite Senator Frances Black and Deputy Pringle to ask their questions together in the interest of time.

Senator Frances Black

I will try to be as brief as I can. I thank the witnesses for the fantastic work they are doing. They are doing phenomenal work on the ground.

I am very interested in the alcohol programme. I know that Dr. Helen McMonagle referred to the stigma and spoke a little about it, but I am extremely interested in this area. There seems to be a significant moral model and stigma around alcohol-related brain injuries and foetal alcohol spectrum disorder and at one point Dr. McMonagle said that people are passed between pillar and post and fall between two stools. There seems to be a lack of compassion and empathy-----

Dr. Helen McMonagle

Absolutely.

Senator Frances Black

----- around this area. From Dr. McMonagle's perspective, how does she think we can go forward on the issue of foetal alcohol syndrome and alcohol related brain injuries?

There was a World Health Organisation report on Neurological Disorders: Public Health Challenges. This extensive report described and discussed the increasing global public health importance of common neurological disorders such as dementia and epilepsy. It dedicated a whole section to the neurological disorders, associated with malnutrition and the ingestion of toxic compounds, such as alcohol. What efforts are being taken in the Irish neurology services to address these two neurological conditions, particularly around alcohol-related brain injury and foetal alcohol spectrum disorders?

I am sorry for rushing but I have many more questions.

Deputy Thomas Pringle

I shall be very parochial and direct my questions at the Donegal team. Interestingly, the Donegal team is a national team that is based in Letterkenny. The model is very good. It proves not everything must be based in Dublin and, therefore, should be considered for use elsewhere

The presentation outlined everything and was very worthwhile. As Ms Leonard said, there is no stigma, no shame and no blame in dealing with these issues, which is a vitally important message. As the HSE and the Department of Health will understand, the initiative will save money. I know that is the reality especially from sitting on local health forums every couple of months where we discuss the delays in discharging people from hospitals and ways to get people out of hospital. The initiative will save money and free up beds, which is vitally important.

I ask the Chairman, on behalf of the committee, to start a conversation by writing to the HSE and the Department of Health outlining the two tasks suggested by the Alcohol Forum. I mean the establishment of a multidisciplinary cross-directorate national working group to tackle alcohol abuse and ensure there are clinical guidelines for diagnosing foetal alcohol spectrum disorders, FASD.

Chairman

Before we conclude I shall ask about the deficiency in the number of neurologists. Has progress been made with the development of community clinical nurse specialists in terms of Parkinson's disease, multiple sclerosis and all the other neurological conditions that require community services? If one cannot see one's neurologist or there is not a sufficient complement of neurologists then surely community nurse specialists in those disciplines would be of great benefit to people. The initiative would reduce pressure on hospital-based services and increase the involvement of nurse specialists in delivering services in communities. The witnesses can answer the questions in whatever order they like as long as they answer them all in the next ten minutes.

Ms Magdalen Rogers

We are very pleased that the focus of the neurology clinical programme is now very much on the role of the clinical nurse specialist and increasing that role. Very positive results have been generated by the epilepsy programme and its concentration on the development of the clinical nurse specialist. The lessons that have been learned are being transferred to the neurology programme. Today, the committee heard about some proposals to increase the clinical nurse specialist role in the management of motor neurone disease and multiple sclerosis and I completely agree with the Chairman that needs to be transferred to other conditions. The Neurological Alliance of Ireland welcomes the current focus on the neurology clinical programme.

Chairman

Senator Black asked about foetal alcohol syndrome spectrum.

Ms Paula Leonard

I suggest Dr. McMonagle first answers the piece about a stigma.

Dr. Helen McMonagle

Yes. The stigma around the condition is very pervasive. There is a presumption that the condition is self-inflicted, that the person has had a hand in inflicting this, that sufferers are just alcoholics and difficult clients. We need to consider that the majority of the people in Ireland who drink do so at a harmful level. More than 150,000 Irish people are dependent drinkers and 1.35 million people are harmful drinkers. It is important to note that alcohol dependency is a very big issue in Ireland. In terms of neurological conditions, every life is important regardless of the cause of a person's disability or neurological condition. These conditions must be given emphasis alongside other conditions and in a consistent way.

Senator Frances Black

What efforts are being taken in Irish neurology services to address the two neurological issues around alcohol-related brain injury and alcohol? Has anybody any awareness around that? Perhaps there are not any efforts being made.

Ms Magdalen Rogers

Efforts are being made by the groups that are here today. There are also some isolated initiatives and individual clinicians doing their best and taking a role in highlighting and researching the issue. As our colleagues have said today, it must have greater prioritisation. The World Health Organization, WHO, report names neurological conditions as the greatest challenge facing public health systems worldwide and we, in Ireland, are not treating them accordingly. We have not been doing so and continue not to address the needs of people with neurological conditions. This is coming down the line like a steamroller because of our aging population and, as a health system, we are not putting in the necessary investment or planning.

Ms Paula Leonard

It is important that we are here today with this group of people. We often think, act and have policy in silos. It is important, as part of the destigmatisation of alcohol, that we start to look at it as a neurological condition rather than the underlying cause of the neurological condition. As a country, we absolutely need to address our problematic relationship with alcohol in the context of some of the figures Ms McMonagle has outlined. We need to look at the condition that is in front of us. Today's discussion has been welcome and I thank Deputy Pringle for his proposal that this committee would write formally to the HSE and the Department of Health.

Our other ask is that families have an opportunity to give a sense of things. Families are finding voice in Ireland for the very first time. It is not that we have a moral model in Ireland, we have no model at all. We have no diagnostic specialists and no guidelines for foetal alcohol spectrum disorders, FASD. We welcome being here and I thank the members of the committee for the opportunity.

Chairman

Many of our guests have made representations to appear before the committee so we are glad to have been able to accommodate them. I thank Senator Dolan for his assistance in organising this meeting.

On behalf of the committee, I thank the representatives from the Neurological Society of Ireland, the Disability Federation of Ireland and the Alcohol Forum for giving such excellent evidence this morning.

The joint committee adjourned at 1.52 p.m. until 9 a.m. on Wednesday, 15 May 2019.