Léim ar aghaidh chuig an bpríomhábhar

Joint Committee on Disability Matters díospóireacht -
Thursday, 18 Nov 2021

Aligning Disability Services with the UN Convention on the Rights of Persons with Disabilities: Discussion (Resumed)

Apologies have been received from Deputy Moynihan. The purpose of today's meeting is to discuss aligning disability services for chronic disease with the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. On behalf of the committee I welcome Ms Olga Wehrly, Ms Anna-Karin Ulpe, Ms Lorna McGreehan and Ms Mary Casserly. I will introduce each of them in turn and ask them to speak in a few moments.

I remind members that they are only allowed to participate in the meeting if they are physically located on the Leinster House complex. If members are joining the meeting remotely, I ask them to confirm they are on the grounds of the Leinster House campus prior to making their contributions. For anyone watching this meeting online, the witnesses are accessing the meeting remotely. Due to these unprecedented circumstances, I ask that everyone bear with us should any technical issues arise.

Before we commence formal proceedings, I must begin with some formalities and advise our witnesses on the matter of privilege. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given. They 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 wish to advise witnesses giving evidence from a location outside of the parliamentary precincts to note that the constitutional protections afforded to witnesses attending to give evidence before the committee may not extend to them. No clear guidance can be given on whether, or the extent to which, the evidence given is covered by absolute privilege of a statutory nature. Persons giving evidence from another jurisdiction should also be mindful of the domestic statutory regime. If they are directed by the committee to cease giving evidence in relation to a particular matter, they must respect that direction.

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 or persons outside the Houses or an official either by name or in such a way as to make him or her identifiable.

Before I call Ms Olga Wehrly to make her opening remarks, Senator Erin McGreehan wishes to make a statement in regard to her relationship to one of the witnesses.

I want to declare the beginning of the meeting that my sister, Lorna McGreehan, is one of witnesses. I am very proud of my sister who has come in today and it is great to have sisters doing it for themselves today. I will not be directing any of my questions towards Lorna as I do that regularly anyway. I thank the members.

Ms Olga Wehrly

I am a single parent with what is for me an invisible illness but not for many sufferers. I have a connective tissue disorder called Ehlers-Danlos Syndrome, EDS. It means the collagen my body makes is faulty, so my joints are really bendy and it affects my organs in varying degrees. My daughter, who has it too, also has anaphylactic allergies and significant asthma. I also have attention deficit hyperactivity disorder, ADHD, which is a common comorbidity with EDS.

Since we are in the middle of a pandemic, I should add that I have had long Covid since January 2020.

EDS is a multi-systemic disorder of which there are many subtypes. Most are diagnosed genetically, but there are no markers yet for the subtype I have. It was flagged when I lived in the UK in 2012. When I moved back to Ireland in 2013, I set about the laborious task of trying to find an assessment. There were no EDS specialists in the country at the time, and almost a decade later, there still are none. This is disastrous for families like mine, since usually more than one member is affected, and EDS presents completely differently in everybody. There is no one overseeing our care, which needs a multidisciplinary approach. A GP is the first port of call, but it is outside their wheelhouse, so to speak. In order to access medical and physical therapies in the Irish healthcare system, we generally have to be referred individually for each body or brain part and explain the disorder from scratch each time. Although awareness has increased, this whole lengthy process could easily be avoided. The resultant drain on everyone’s time and money could be avoided by multi-systemic overviews, saving families time on travel to and from a plethora of appointments and risking being considered a hypochondriac for having a systemic illness.

I have travelled to the UK for treatment by EDS specialists in the hypermobility clinic in London. I had no choice, as I wanted to put a treatment plan in place to get back working. I work as an actor, which can be quite physical. There were no options here, which is contrary to the UNCRPD. The HSE does not cover these trips under the treatment abroad scheme. Many of us have Chiari malformation in varying degrees, which can be quite dangerous. For us, it is diagnosed with an upright MRI scanner, and we do not have this service in Ireland either. A scan in the UK can cost £2,000, excluding travel and accommodation and, again, this is not covered by the HSE treatment abroad scheme.

This wastes lots of time and resources for us and the health service. Many of us have had to go private to be assessed, where possible, treated, and for maintenance of the many anomalous chronic EDS issues. This is costly. Other hidden costs involve buying support garments and modifying our cars to make them easier to drive. For example, I drive an automatic car now. Some people need more extreme modification. Costs for heat pads and regular physiotherapy all mount up. Without regular physiotherapy, I would not be mobile. I do it so I can work and parent. I have had access to amazing physiotherapy through the HSE for a few years, and then a physiotherapist came to my area who had no interest in EDS and no interest in helping me, so I ended up going private. It costs me thousands every year to do private physiotherapy, without which I would not be able to walk or work with ease, and I am one of the extremely lucky ones. I am paying through the nose so I can participate in society, but I should not have to.

The mobility grant, which was to aid people with walking difficulties, was stopped to new applicants in 2013. A new scheme was due to replace it but, as far as I am aware, nothing has transpired. The mobility certificate is available to those who are significantly impaired, but for many of us who are chronic sufferers, we fall between the cracks. We are not considered disabled enough, and therein lies most of the indignity of the application process. The refusals for domiciliary care allowance, DCA, and disability allowance are such a common thing that people in support groups are advised to apply over and over. I have never applied for it. I find the social welfare system hostile and intrusive at best, and I do not have the stamina for the overly complicated application process.

I am lucky to have a medical card on medical grounds, but I have no idea how I would afford EpiPens for my daughter, inhalers for both of us, medication and the many doctor appointments we have throughout the year without it. The renewal process for the medical card is stressful and humiliating. By the time your card is granted, you are panicking about having to reapply for the year following. I must pay for letters from my GP to reapply and prove how needy we are, despite the reality that our circumstances are not likely to change from year to year.

Disability payments are means tested, meaning many people with EDS would lose all their family supports should they, for example, meet a new partner who is expected to shoulder the burden of a family's medical costs. Further, should they want to be fulfilled and try to work as much as they can, they may lose access to supports like their medical card and other health services. This puts people like me in an even more marginalised category, where we are left under a glass ceiling and unable to fulfil our potential. If we work, we have supports removed. If we move in with a partner, we have supports removed.

Most people I know are overwhelmed and not able to work as a result of bureaucracy, or are supporting families on low income rather than being able to do the jobs they previously enjoyed, even on a part-time basis. There are no strategies to keep people in work because the support system is not tiered; it is all or nothing. Rather than this binary view of our health and welfare system, we should be creating an environment where it is beneficial to all of us, and society as a whole, whereby people feel they can achieve their potential. If we do not feel useful, we are not fulfilled, and we have every right to feel useful.

Anxiety, depression and neurodivergence are common issues with EDS, but again, there are no supports for this in the public health service. There is no public adult attention deficit hyperactivity disorder, ADHD, assessment pathway in Ireland, despite the HSE website saying the contrary and making public reports about it year in, year out. The website for ADHD for adults looks like an advertorial. There is no route progression that you can access and have a look at. It took me more than 20 years and hundreds of euro to access an assessment. My education experience was significantly affected by ADHD. I dropped out of university and I struggled with disorganisation for years. I now work as an actor and it affects how I learn dialogue. I had to pay privately for these services for two decades on a low income because the provision is not there. I am now able to access my local HSE mental health team, but they are so understaffed that I have had appointments cancelled due to no doctors being available. The health system is creaking at the seams. It seems almost unrealistic of me to expect improvement to disability services when there is a sparse and burned out staff. We are at the bottom and we are suffering because of the inadequate structures. My daughter has significant asthma. We have seen her consultant once since 2019 and she will not be seen again until mid-2022, despite a few accident and emergency trips in the last 12 months.

I have long Covid since January 2020, which has caused significant problems throughout the year with breathing, driving, walking, cooking, dressing, my voice and the school run. I estimate it has cost me a few thousand euro this year alone in consultant fees and diagnostic tests in the private sector, despite attending one public hospital long Covid clinics as well, which was seriously busy. Without those private appointments, my recovery would not be as advanced as it is now. However, I had to pay for it and I could ill afford it. I am one of the lucky ones. There are no long Covid facilities for children in this country. There are no statistics being kept on long Covid sufferers in Ireland. Why not? If you do not count us, we do not exist. It is a disaster that is happening now.

That brings me to the end of my piece. As someone said to me yesterday, it is not our issues that are expensive, it is inequality itself that is so costly to society as a whole.

Thank you very much for sharing your experience with us, Ms Wehrly. I call on Ms Anna-Karin Ulpe to make her opening remarks.

Ms Anna-Karin Ulpe

I thank the committee for inviting me today. Have members ever experienced a phone battery that does not get them through the day, or a battery that dies exactly when they need it? Imagine if that battery were your body, and you woke up one day and your internal battery was only charged to 20% and it could never be fully recharged. You would need to get your priorities right if you did not want to get sicker. What would you choose, showering or having a conversation with a friend? Imagine this is your reality every day and no doctor can tell you what is wrong. You are on your own.

I am 53 years old and my life changed in 2014. From working full time, I could no longer get out of bed. It took me five years to get the correct diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome, ME/CFS. It is a complex, multi-system disease and the typical diagnostic criterion is that if we exert ourselves outside our energy envelope, our symptoms get worse. The deterioration may be immediate or delayed, and can last days, weeks, months or forever. Currently, I am mostly housebound, but on my best days when I am able to go outside my home, I use a mobility scooter. For years I have been bed bound.

I will focus on three things essential for myalgic encephalomyelitis, ME, sufferers: healthcare, mobility and housing. Adequate support starts with healthcare. The HSE currently has no pathway to care for ME patients and not a single official ME consultant. Many consultants and GPs dismiss ME or have no knowledge of it. The result is that many patients get no diagnosis or treatment.

In some cases, patients are unable to access healthcare as they cannot leave their beds or houses and home visits are not available. Without early and correct diagnosis, patients risk permanent deterioration. This happened to me when I tried exercising my way out of illness. It ended with collapse and I never got back to my previous level of functionality. Even if there is no medicine specifically for ME, there are possible medical interventions to alleviate some severe symptoms. In my case, I now take medication that helps me to remain upright for longer periods.

Without a supportive consultant, you are also alone in your fight for financial survival. After five years of limbo and relying on my partner for the basics of care and food, I could get a diagnosis and treatment that improved my quality of life. This could happen only because a friend drove me - I was horizontal in her car - from Dublin to Tullamore hospital, where I saw a consultant with a special interest in ME. He is accessible publicly only if you live in the catchment area. Before Covid, he used to see patients privately one afternoon a week; now, we have nobody. Ireland desperately needs public ME clinics in each hospital group. We need healthcare staff trained in ME and willing to keep up with the biomedical research in the field.

A consultant is also essential to accessing relevant mobility aids. I missed out on being outdoors for years and it took an incredible toll on my mental health. It was not primarily the isolation that got to me. I desperately missed the sun on my face, the wind in my hair, even rain in order that I could still feel I existed in the physical world. I have a tiny mobility scooter now, thanks to a friend who organised a fundraiser for me. It is the only mobility aid we can get into and store in our living room. We have no access to a car and my ability to use public transport is extremely limited. I really need a power chair and a ramp but, if renting privately, you have no right to adapt your housing. The welfare system is designed assuming that disabled people who do not own their home live in social housing. This is not true. My household is now on the council's list for adapted housing, thanks to my consultant, but how long will we wait?

In the meantime, despite my partner and I both getting the invalidity pension, we do not get fuel allowance. The maximum household income you are allowed in order to qualify is €1,509 per month, while the average private rent in Ireland is currently €1,334 per month. We cannot afford to keep the heat on. The system increases the risk of my health deteriorating further.

I cannot expect society to give me my previous life back, but I expect everyone with a disability to get their basic needs met, access to appropriate healthcare, mobility and suitable, warm housing. We deserve a life with dignity, quality and independence.

I thank Ms Ulpe and invite Ms McGreehan to make her opening remarks.

Ms Lorna McGreehan

I thank the committee for the invitation. I have lupus, which is an auto-immune disease, and I am visually impaired due to medication I was taking for lupus. A wide range of problems affect people who have disabilities or suffer from chronic illnesses. Some of these issues are small and some are massive. Disability awareness training should be compulsory for all who deal with people. Not all disabilities are on show. I have been told that I do not look like a blind person. People need to learn and I do not speak for all disabilities. I also need training. Change needs to come from the top down. Every Department needs to have an ethos of inclusion, not just a box-ticking exercise. Training needs to be given to schools and colleges in order that this can become the norm rather than the exception.

I do not want special treatment but I do want equality and a level playing field. When technology is available but cost prohibitive, it is soul destroying. Grants should be given to the person, not the employer. No one should be indentured to an employer. If appropriate technology was available to all with disabilities, it would improve job prospects and career development. This should be dealt with by the Department of Enterprise, Trade and Employment. We want to be employed. Having assistive tech grants based in social welfare seems out of place. Help to encourage people with disabilities into the workforce has to be a win for all. Having a purpose, getting up in morning and going to work is so beneficial to a person's mental and physical health, disabled or not, but so many obstacles are put in their way. Having to take annual leave to attend doctor's appointments seems totally unfair. Annual leave should be used to rest but, alas, that does not always happen. Losing benefits because you are marginally over the income limits is not right.

I have always worked. I might be in agony and have loads of obstacles in front of me but I still work, and I think that has stood to me mentally. I am lucky to have supportive family and friends but additional supports are not always available, and sometimes it feels counterproductive even if they are offered. Should I burden my carer, my husband, with another journey? Should I use the last of my annual leave when I feel exhausted and could do with a day off? Financial pressure is increased tenfold when you have a disability. Families struggle, and then there are additional costs such as bills, travel expenses and medication.

The long-term illness list has not been touched since its inception in 1972. Lupus was first named in 1971. Why can this not be added? Surely, after 50 years, it is time to look at it again. It should not come down to finances whether a person with a disability can go out to work or not. Running a car is getting more and more expensive, but when you are living in rural Ireland, a car is a necessity, not a luxury. Only 24% of people who are visually impaired or blind in Ireland are employed. This needs to change. We should not be made to feel grateful for the scraps from the table. Some people ask, "Sure haven't you got a job?" I know I am lucky in many ways, but it could have been easier and still can be made much easier by letting me reach my full potential.

It is up to the members of this committee to make changes. I urge them to be our voice at the table where decisions are made.

I thank Ms McGreehan and invite Ms Casserly to make her opening remarks.

Ms Mary Casserly

I thank the committee for inviting me to speak as a person living with early onset Parkinson's disease and for the help the committee has given me. I was diagnosed with early onset Parkinson's three years ago, at the age of 53. I am married with two sons and live in County Wexford. I started to notice I had symptoms such as slowness of movement, fatigue and unexplained pain. I would sometimes have a tremor, which started to appear more often if I was under stress.

It was thought I might have fibromyalgia and an essential tremor. My sense of smell was affected and I was referred to a consultant who did a scan, which came back clear, and I was then given steroids, which showed no improvement. My shoulder was sore, so I was referred to a physiotherapist. My left hand and wrist were painful and typing long documents became difficult. My sleep was disturbed and I would be awake for several hours at night. I also noticed I was not swinging my left arm when I was walking and I started to drag my foot at times.

I went through many years of wondering what was wrong and why was I feeling like this. We need more awareness of conditions such as early onset Parkinson's, as per Article 8 of the UNCRPD on awareness raising. My GP sent a referral to a neurologist and, even with private health insurance, it took three months to get an appointment. Going through the public system at that time would have meant waiting about 18 months because there are not enough neurologists in Ireland.

It is a lot to take in when you are told you have a progressive, incurable disease. I left the neurologist's office in total shock and wondered what I would do. I was given a prescription which I paid for myself in the first two months because I had never heard of the long-term illness card. I went through many emotions as I learned that my life would no longer be how I had imagined. It was difficult to tell our sons, who were 21 and 18 at the time. I also wondered who else I should tell and when, and if I would be treated differently. It was also coming up to our 25th wedding anniversary, but I did not feel like celebrating and thought: what a gift for my husband.

I was working in accounts at the time. I had hoped to have worked for many more years, but as the months went on, I was finding it more difficult due to lack of sleep and pain. I did not know what options were available to help me to stay working. I had not heard of EmployAbility or work adaptation grants. So, nine months after my diagnosis, I gave up work due to the symptoms of early onset Parkinson's.

I felt very isolated, being diagnosed with a disease that normally affects older people. My closest experience of Parkinson's was with a family member who was diagnosed when he was in his 80s. I wondered if I was the only person in County Wexford with this condition. Eventually, I met people my own age, and through this peer support I got information on what I needed to do to try to live as well as possible with Parkinson's.

I had balance problems in the beginning, because I did not know that I needed to do certain exercises to help this. I was in a supermarket one day and I went from just standing to a stumble. I could see from the look on a lady's face that she assumed I was drunk. I have also been told that I look as if there is nothing wrong with me, but it is only my immediate family that get the true picture of what it is like to live with the disease: the fatigue; being up for hours at night; suffering stiffness and pain; toes curling under making it more difficult to walk; planning your activities when your medication is working and you are not "off"; struggling down the stairs with pain; and trying to do household chores when fatigue has set in. My day now consists of alarms for medication, timing meals so that they does not interfere with medication, physical exercise and voice practice. I used to be able to garden all day long, but now I have to come in after an hour to rest. Some days, I just cannot do much at all due to persistent fatigue and pain and spend a lot of the day on the couch. Eating a meal takes longer because I am slower cutting up food and my ability to chew is affected as the reduced amount of dopamine in the brain affects all my muscles, even my tongue. My cognitive ability is also affected. I used to be able to multitask, but now I have to concentrate on one thing at a time. I am sensitive to loud noises, so even a supermarket visit can be stressful. Stress tends to worsen my symptoms.

At the moment, I am said to be in the honeymoon stage of the disease. The medication helps, but it does not slow the progression. Exercise is the only known method that helps slow the progression. Advanced Parkinson's can lead to more involuntary movements, and people find it more difficult to move - even to turn in bed. Freezing of gait is another symptom of advanced Parkinson's, which means that your feet feel stuck to the ground and you cannot move forward.

Parkinson's is a very misunderstood condition. There are so many symptoms, and the condition affects everyone differently. I applied for a medical card, but I was turned down because my husband was still working. I would like to outline roughly the cost of an average week. Exercise classes cost €30, alternative therapies cost €65, supplements cost €12.50 and travel costs to attend therapies or classes amount to €25. That comes to a total of €132.50. My social welfare payment is €208.50, which leaves me with €76.00 after paying for the above. If I need to visit to my GP, it costs €55, which is an extra for that week. The social welfare payment needs to be increased and a medical card granted, especially as there are some services that are only accessible if you have a medical card.

There are many functions that are affected by Parkinson's. I noticed that my voice had become very low and I was starting to leave social events early as people could not hear me. I eventually got on to a programme called LSVT Loud. It has really helped me and I now have the skills to help keep my voice strong for as long as possible. In County Wexford, I do not have access to the care of a Parkinson's nurse. I see my consultant once a year, but I do have questions in between those visits. Parkinson's is a complex condition that affects everyone differently. Therefore, one size does not fit all.

We are not getting the care we need to help manage this disease. We should be given a care plan on the day of diagnosis that includes physiotherapy, nutrition advice and voice and occupational therapy. We also need counselling to deal with the shock and ongoing challenges. Early intervention with a multidisciplinary approach is essential to live well with Parkinson's. It would be of huge benefit if we could attend a centre for a week of intensive therapies and assessment and be able to return again after two years for reassessment. This would help monitor the progression of the disease, as per Articles 10 and 26 of the UNCRPD on the right to life and habilitation and rehabilitation, respectively.

Parkinson's is one of the fastest-growing neurological diseases. The incidence of Parkinson's is expected to double by 2030. I am pleading with the Government to act now and to put in place the services necessary to help us live well with Parkinson's. The provision of early intervention and community-based programmes would be money well spent and would take the pressure off the hospital system. People need to have access to ongoing exercise programmes nationwide incorporating balance work to help prevent falls, which can result in fractures and hospitalisation. I ask the Government to ensure that we are not the forgotten people with this disability. We have families that care about us and this disease affects their lives also. I am still the same person as I was before my diagnosis. I ask others to please see me, and not the disability, as per Article 17 of the UNCRPD on protecting the integrity of the person. I thank the members for listening to my opening statement and I welcome any questions they may have.

I thank Ms Casserly for her opening statement. Before I go to the members for their questions and comments, I want to remind the witnesses again not to name any individuals - for example, doctors - or medications when they are answering questions. I call Deputy Wynne.

I thank the witnesses for attending. They referred to a wide range of issues. I thank them for their time and knowledge. It has been really informative and also personal.

There are three main areas that I want to ask questions on, but first, I wish to mention several things that struck me in listening to the witnesses. I have been working with a local diabetes advocacy group, Midwest Diabetes Advocacy. Members of the group have been enlightening me as to the geographical lottery that exists even in terms of diabetes. There is an intervention and education programme, Dose Adjustment for Normal Eating, DAFNE, that is not available in University Hospital Limerick, for example, which means that people in counties Clare, Limerick and north Tipperary are the only people in the country that do not have access to this incredibly helpful programme.

Ms Ulpe told us that there is not one official ME consultant in the State, which is quite unbelievable. ME is not a new condition. I find it concerning that across the whole of the HSE, there is no specialist. Ms McGreehan mentioned that 50 years down the line, lupus still does appear on the long-term illness list. In respect of Parkinson's, I know that there are only three neurologists when there should be 11. This shortfall of eight massively impacts on access to services across the mid-west region. Can any of the witnesses speak to their experiences of that geographic discrepancy, or instances of consultants with a specific area of expertise only working from hospitals that are a great distance away? Is it fair to say that every witness has experienced this lack of access to expertise in their regions?

The theme of financial hardship was echoed across all of the witnesses' statements. It is incredulous that not only is there no costed disability payment, but that other essential payments, such as the mobility grant, have been cut in austerity times and have never been restored. I love the idea that assistive technology grants will be given directly to the individual and not to the employers. I would like to hear the thoughts of the witnesses on what the main asks should be in terms of lessening the financial burden on people with chronic illnesses. Should we be calling for a costed disability payment that is tailored to the specific needs of each individual, or is it better to campaign for each separate payment, for example, assistive technology, mobility grants, etc.?

Finally, I wish to ask each of the witness about personal assistant services. I find it interesting that such services were not referenced in any of the opening statements. I am wondering if any of the witnesses have had access to a personal assistant. Does it come back to the issue of the hierarchy of disability, and as mentioned by one of the witnesses, not being disabled enough? Is a personal assistance service something that would assist the witnesses to live their lives in a more supported way?

Ms Anna-Karin Ulpe

I want to comment on the cost of disability payment, which absolutely should be made available. I am thinking not only of including health aids for physical mobility but also computer technology. I could not live my life without my computer. I do everything on it. I cannot go to a shop to buy groceries. I have to have them delivered, so I have to use the online services. If my computer breaks down, I do not know how I will survive because I am totally reliant on it for everything. Obviously, I would not be here and have a voice today if I did not have a computer. That definitely needs to be included.

On the personal assistant services, I did not mention it because I do not have personal experience of applying for that, but I know many people in the ME community who have struggled to get this in place because ME is not considered a disability according to the HSE. Some people managed to get home help anyway, but I am also aware of several people my age who have been forced to move into nursing homes because they cannot access appropriate home help.

Ms Mary Casserly

With regard to access to consultants in regional areas, I was speaking yesterday to a young mum whose child was sick and she had her appointment in Dublin, 80 km away. The child got sick and they had to turn around and go back, which means she has to wait another nine months for an appointment. Had the neurologist been closer to her, she would have been able to travel herself but, with Parkinson's, people’s energy levels for the day are a bit like money, and they have to spend it wisely. She would not have enough energy to drive to Dublin, have the appointment and get back on her own. That is why we need more neurologists in the regions.

On personal assistants, there are definitely cases where people with Parkinson's just do not have the energy to get up, get dressed and drive to appointments. If they live in a rural area, they would have to drive for half an hour, 40 minutes or an hour to an appointment, do their therapy, or whatever it is, and then drive back home, which is just not possible. A personal assistant would be of great benefit to somebody with advanced Parkinson's.

Ms Olga Wehrly

On the geographical aspect, I live in Dublin. The reason I have stayed here is that my daughter has severe allergies and we have often ended up in hospital with her due to anaphylaxis. I live very close to hospitals but it takes so much energy to go to appointments all the time, even before I had long Covid, and EDS involves an element of fatigue. As Ms Casserly said, there is the spoon theory with regard to chronic illness in that we have a certain number of spoons and we can only use them to do a certain number of things. When people have to drive to all of these specialists and doctors that they are paying through the nose for because they cannot wait for the public system, it is all skewed towards Dublin. I really feel for people who live in more rural locations because their access and their support is much less. I also do not know of anybody who has got personal assistance.

Ms Lorna McGreehan

I agree with everything that has been said. At the same time, I am so grateful for my doctors in Dublin. I have always attended them in Dublin, even though I sometimes have to travel 50, 60 or 70 miles. They saved my life. I tried to do it differently and things did not happen, and by that I mean that I tried to do it locally and things did not work out for me. I am exhausted after my day in Dublin, and that is it. I have to forget about everything else because nothing else is done for the rest of the day, or probably the rest of the week, because I am so exhausted.

On the question of personal assistants, I think that I am so independent that I do not need a personal assistant, and that I am not going to be that person. I have never even thought I would be entitled to this, so I have never looked into whether I would be able to get a personal assistant. We live in rural Ireland, away from my family, and there is no bus except the school bus, which passes my door although I am not allowed to use it.

There are so many obstacles. I mentioned assistive technology, which would make things much easier. It would mean I am able to be independent and to walk around the streets of Dublin or to go to the hospital without having to ask. In some hospitals, I have noticed that the signs are positioned way up so some people cannot see them. I have been laughed at and people say, “Oh yes, the last porter was really tall.” Things like that are crazy in this day and age. There are so many simple things that could make people's lives a bit easier. It is also about the knowledge on whether people are entitled to supports and where to go for them. In the private sector, people can apply for workplace adaptive grants and so on. We need more knowledge and more assistance.

Thank you. I call Senator O'Loughlin.

I am conscious that I may have to leave before the end of the responses because I have the first Commencement matter in the House. I will listen back to the responses.

I thank the four witnesses. It was very humbling to listen to details of their experiences, which is essentially what we want to do. We want to try to identify the many challenges they have in terms of living their daily lives and see what recommendations we can put forward to try to help to support them. Today’s meeting is very useful in terms of shining a light on the invisible disabilities that are not all too obvious, and getting more information on the background of how the medical world treats them and how society treats them, as well as looking at the stigma and discrimination that most definitely is impacting daily on all of them.

There are a few common threads. The lack of effective communication between primary and secondary care is cited as a big barrier and is hugely important. There is also the fact chronic disease management is currently hospital-based as opposed to community-based. Having listened to Ms McGreehan talk about what it takes for her to go to hospital for her appointments, we can see that the day is fully impacted from her perspective, as well as the following days. I would be interested to hear from all of the witnesses how they feel the appropriate community care would help in their own situations.

There certainly seems to be a lack of joined-up thinking in terms of the different supports that are needed. I completely agree about the mobility grant.

With regard to the public realm, Ms McGreehan spoke about how inaccessible services can be and how many areas are not disability-proofed. I was shocked to listen to Ms Casserly say she is not entitled to a medical card, particularly given the fact Parkinson's is the fastest growing neurological disease and is expected to double. I have some friends who have Parkinson's and I know how it can impact people's lives.

I want to ask about filling the gap in terms of information around supports for people everywhere in the service industry, that is, within the Civil Service and public service, as well as in other areas, with regard to having the appropriate disability awareness in dealing with people with invisible diseases.

I call Ms Casserly.

Ms Mary Casserly

There was a comment with regard to joined-up thinking. A great deal of planning is needed. It is hard to know where people with Parkinson's are. To roll out services, we need to know where people are located. There is no database. There is also a lack of information with regard to what the HSE is doing. My understanding is that it sometimes runs courses or information clinics, but not that many people know about them. The HSE is probably finding it hard to get that information out to people with disabilities. There is need for more planning and more communication between departments and people in order that if courses are being rolled out they can get that information out there.

Ms Lorna McGreehan

In terms of my lupus, all of my services are in Dublin. When you have lupus, there are so many things that can go wrong. It can affect the heart, lungs, liver, kidneys, central nervous system and the brain. I have decided to keep everything in one hospital because that is the only way that I can feel safe. In regard to my eyes, because I was on medication for a long time, the retina was burned out of the back of my eye. It is very rare that that happens. One has more chance of winning the lottery. It is macular, but because it is drug induced nobody knows for how long more I will have the degree of sight that I have. It is my personal decision to keep everything in one place, with the HSE and my doctors. In recent times, things have been changed up. One of my consultants retired and so things will be a little bit more difficult until I find my feet.

I am in the lucky position that I can interview my doctors. I will not accept bad manners; I am fed up with that. We have to be strong. Without a specific doctor to go to, I do not know where I would be. On discrimination with regard to public transport, rural Ireland does not have a public transport system to enable people to get from A to B. One is always relying on taxis, strangers and so on for transport. There are things that can be made better. Hopefully, we can do that.

Ms Anna-Karin Ulpe

On the topic of accessibility, it is assumed that people can drive or that they have somebody to drive them to appointments because, very often, public transport is totally inadequate. I am in a better position that other people because I live in Dublin. During most of my illness, I have not been able to use public transport because I cannot not sit upright for too long. During my journey to finding my final and good consultant, I saw ten health professionals. As I could not sit for too long in waiting rooms, I brought my yoga mat with me to lie on so that I would not faint before I was seen. When I rolled it out on the floor, I was told that for health and safety reasons I was not allowed to lie down. Nobody ever thinks that people might be so sick they need to lie down in a waiting room if waiting for an hour. This is the first hurdle that must be overcome. It would be so easy to provide a space where people can lie down.

The person who cannot drive or access public transport should be able to access health care through home visits otherwise they are just being left to rot. It is important services are provided close to the person in the community. To get my Covid jab, I had to use public transport and even though it was only a short ten-minute journey it took so much out of me in terms of energy that I was in bed a for week afterwards and could only struggle to get to the toilet. There was no accommodation to sort this out in any other way. That is my note on accessibility.

Ms Olga Wehrly

I want to follow on from what Anna-Karin said about accessibility. Since I got long Covid I have had similar issues with public transport. When I am in a flare of EDS, there is often no seating at the bus stop. If you have to go somewhere and you need to be there at a particular time, inevitably it is easier to drive, if possible. I have noticed that a lot of seating has been removed in our urban areas and villages. Two weeks ago, I went to a private shopping centre in a nearby village. There are no seats there, apart from in the cafés. For people with mobility issues and people who get fatigued, it is really important that we make our villages and towns more friendly. Currently, these places are very hostile in that there is nowhere to sit down and rest. It is seen as inciting antisocial behaviour. That is at the expense of people who really need to take a little breather. Access to toilets is also an issue. I noticed during the pandemic that there are very few, if any, public toilets. We are relying on the private sector to provide them and that is not appropriate.

I thank Ms Casserly, Ms McGreehan, Ms Ulpe and Ms Wehrly. I now invite Deputy Canney to make his contribution.

I thank all our guests for being here and for their presentations. Ms Casserly mentioned that a number of years ago, all of a sudden, as a young woman she was faced with Parkinson's, wondering how she was going to cope with that and tell her family about it and that she also had to give up work, etc. It has been life-changing. I do not wish to be despondent, but what I am hearing is that she is left in a void, that she has to start at base level as if she is in junior infants and only beginning to get on with life from hereon in, but the supports are just not there and there is no pathway. This comes through in other areas such as, for example, when a child first receives a diagnosis of autism. The parents have to first cope with that and then find out where to go, what to do and so on. What is lacking is a type of case-worker who will take on the person or family and point them on the pathway in terms of services, contacts and how they are co-ordinated. There is a huge gap in that co-ordination for anybody with disabilities, be that an acquired disability or one the person was born with.

An issue regularly raised with me, and with this committee by witnesses, is that of entitlements, in particular the medical card. There should be no question that anybody with a disability should be entitled to a medical card irrespective of income. That should be a given. I know of amputees, some of whom have appeared as witnesses before this committee, who cannot get a medical card. Even though the cost of replacement of an artificial leg is €20,000 and that might need to be done every two or three years, in the cases raised with me these people cannot get a medical card or access funding. The lived experiences of the witnesses are important to us as policymakers and legislators. They have articulated those experiences well today. It is important to note that the mobility grant was withdrawn and that ten years later it still has not been replaced. That is a huge issue. Anybody trying to get a primary medical certificate will know only too well the difficulties that arise in that regard.

I come from east Galway where, when people are refused a medical certificate and they have to go for an assessment, they are offered an appeal in Dún Laoghaire. It might be an enormous challenge for them to get to Dún Laoghaire for the appeal because they may not be fit to travel to Dublin, which is a 2.5 hour journey each way. We do have other clinics, such as the clinic in Roscommon, which I last visited three or four years ago. That is the type of problem people are facing.

There is something that galls more than anything else. I have come across a number of cases of it. One man getting disability payment got married. His wife is working. His disability allowance has been cut to about €50 a week because his wife's means are taken into account. I have met the couple. It is demoralising for him. He says had he known this would happen, they would not have got married but would have lived in sin. He smiles when he says that, but he is very upset that he is being penalised because he got married.

Housing adaptation grants were mentioned. There is a problem because the local authorities do great work on this but they are given an amount of funding, and they make a contribution towards the cost but they do not cover it. Then, when they assess how much they will pay, they must look at all income coming into the house. If a son or daughter is living in the house because they cannot afford to rent, and they are working, their income must be taken into account and that might push someone over the threshold where they will not get even 10% of the cost of the adaptations. We have a lot of work to do.

I do not necessarily have questions for the witnesses, but I want to echo what we get from others. I commend the witnesses on their forthright contributions. The committee is working hard and is united. We are doing that because every one of us on the committee wants to be on it. We volunteered to be on the committee to try and make a difference. With the witnesses help and continued engagement we will do that. I thank the witnesses and apologise because I must go to the Business Committee meeting at 11 a.m. If I leave, I am not being disrespectful. It is just that I have to be elsewhere. There are many issues and problems, and we want to be able to support the Minister in making changes. That is why we are working as we are.

Ms Mary Casserly

I thank the Deputy for his comments and observations that when we are diagnosed, we have to cope with the diagnosis as well as having to fight. It can be very hard to do both. You do not want to have to be fighting all the time for your rights.

I was told that information was given on Parkinson's, but it was not geared towards the early onset form of the disease. A young person in his 40s was in a group with people in their 80s. They were talking about hoists and choking. That is scary to hear that in your 40s. We need information appropriate to the right age group.

On medical cards, it is terrible that we are depending on our partners to support us. I am mindful that I am lucky to have a partner. There are people living on their own depending on the social welfare payment. I spoke to one man who had an automatic car but had to get rid of it because he could not afford to meet the bills. That means he is further isolated from society because he cannot drive in a rural area.

Ms Anna-Karin Ulpe

I thank Deputy Canney for raising the grants. It is good if you can put the money up front first and get some back but for those who cannot afford any co-payment, they cannot avail of those grants at all. To the poorest, least is given.

On assessing the means of the whole household, it is well and good where someone has a partner. Say if you are long-time married, the partner will contribute to your expenses but there are people in their 20s and 30s who cannot move on in their life or form significant relationships because nobody dares to go into a relationship with them because they know that they will have to be their carers instantly and have all that responsibility and they will have to pay for them for the rest of their life. It is a totally unequal relationship that is doomed from the start. I really feel for the young people who cannot support themselves or form new relationships.

Ms Olga Wehrly

The Deputy mentioned a friend whose disability payment was affected because they were married. I want to highlight the huge discrepancy between how Revenue and Social Welfare treat marriage and cohabitation. In Revenue's eyes, if you are not married you do not get the benefits of being married, but with the Department of Social Protection if you live with someone, you are treated as though you are married and are penalised accordingly. As a result, I am afraid that living in sin would not have saved him. However, it is an issue for a lot of people. Why is there this difference in the benefits and disadvantages accrue? It is of benefit to be married for Revenue but in the eyes of the Department of Social Protection it makes no odds.

I am in my Carlow office, not in the Dáil so I just want to say to the witnesses that it is very important that we listen to them and all their concerns.

I thank all the witnesses. I appreciate that they are sharing their very personal experiences. As Deputy Canney said, the committee is very united in supporting and advocating and very respectfully treating everything that is exposed to us. It is a very vulnerable experience for the witnesses but it is very much appreciated. We really value it.

If I were to look for a trend across all the contributions, it would be cost and a lack of joined-up thinking. It is shocking that the list has not been updated since 1972 given how far medical science and diagnosis and so on has come on in 50 years. I will give out about that in the Seanad later. There will be chronic illnesses that we might not have the specialism or that has not yet evolved or it is newly diagnosed or new thinking. However, there is a formula of using an multidisciplinary approach. I am not a medical person and am learning on my feet in the Oireachtas. However, the organiser in me would draw up a spider diagram and consider the A to Z of issues. Having a template of considerations for novel illnesses should not be beyond the abilities of people in the HSE. I fail to understand why that has not been done and why there is not a formula in central office for newly emerging illnesses. Take long Covid. While we are learning on our feet, literally, and it is new, there should be a formula that we are able to apply. The common theme I hear from everyone is the idea that an illness comes forward and there is no adequate response. It is up to the person who is grappling with the consequences of living with that illness to find out all the solutions for themselves. The concept of a one-stop-shop or office that could be set up to provide that information and orchestrates co-ordinated thinking should be feasible. I really do not understand that.

I know that each of the witnesses are here as individuals rather than representative organisations but are there organisations that support their particular illnesses? I know in the case of Parkinson's disease there is. Do we have any idea of numbers? When we are talking to gurus in Departments, it is useful sometimes to turn around and quantify and say this is how many people there are. It further exacerbates the shameful lack of thinking by being able to quantify. One person is enough for us to have an adequate response as a State. I am not trying to minimise it in any way. I am just saying it gives us an idea. I think I have covered it all. I have not gone anywhere near the remotest outrage I felt when I was reading the witnesses' statements but I think from that perspective, those are the sorts of things. On that medical card issue and the lack of not being disabled enough, I have a very close supporter who equally is an amputee and has never qualified. Again, the idea of that is absolutely shameful. I am aware there is not really a question in that; it is just me venting. If there is anything the witnesses want me to take on board they should please feel free to say so.

Ms Anna-Karin Ulpe

I thank the Senator for that contribution. The idea about a one-stop-shop would be absolutely fantastic because one has to duplicate so many applications for every individual piece of help that one can get and it takes absolutely all of one's available energy. It has been just form-filling, eating and sleeping. That is my life, more or less, so if the different parts of society could talk to each other and co-ordinate between themselves it would take a huge load off us really.

When assessing if people are eligible for different grants, benefits, housing or the fuel allowance, one important thing is forgotten now and that is to take into account what a person's available income is after his or her rent is paid. I constantly feel like we renters in the private sector are forgotten about. We may have an income that would have been adequate if we lived in social housing or if we had a long-term mortgage but with the current market rent, we are very often left with less after rent is paid than the supplementary welfare allowance. We are, therefore, the poorest percentile in Ireland and yet for some things, we cannot get help. We do not qualify. That is extremely frustrating.

I can tell the Senator about the numbers of people with ME in Ireland. It should be approximately 10,000 to 19,000 people but it is really hard to estimate because so many people are undiagnosed as a result of lacking consultants and because so many people cannot travel to care or consultants abroad. They are really stuck in that sense. There is a very good organisation called ME Advocates Ireland, MEAI. It has a survey under way that will be handed over to the HSE when the data is collated and interpreted, and probably to the Department of Health as well. Then, the Senator will be able to look at this and see what the situation is for all those people in Ireland now and what we need help with. If anybody-----

I am sorry for cutting across Ms Ulpe. When that is ready to go I would urge MEAI to contact us as a committee and we will go out to the gates of Leinster House and receive it on Ms Ulpe's behalf. I believe that would be an important thing to do and I know our committee would be only too delighted to support that.

Ms Anna-Karin Ulpe

I thank the Senator. MEAI would be delighted to hear that; the committee is very good. For anybody interested in the newest research on ME and also on long Covid and the relationship between long Covid and ME, there is a fantastic resource called Open Medicine Foundation. The website is omf.ngo, which stands for non-governmental organisation. It is a global research leader with six research centres across the globe. It is US based but it is also in Canada, Australia and Sweden. It is trying to uncover this newest problem in the world now. It is independent so it is relying only on private funding. No governments are supporting it. It has two Nobel laureates among its researchers. There is loads of information on its website if anybody is interested in that.

Ms Mary Casserly

It is interesting to hear that ME sufferers struggle to find the numbers as well because we are saying that somewhere between 12,000 and 18,000 people in Ireland are living with Parkinson's disease. Therefore, how can we forward plan if Parkinson's is going to double by 2030? If one does not have the figures on where people are, how can one forward plan for the health service? It does not make sense for planning that we cannot get these figures. We should have a database and every condition should have exact numbers. I like the idea of having a centre to co-ordinate everything so that people could seek support or even say there is a support group. Everybody needs peer support. We could link in to all the support groups for every condition and say this is where a person can go and get peer support, which I found so beneficial. I would not have gotten half the information I have today only for my peers.

Ms Lorna McGreehan

The pathway that Deputy Canney and Senator Seery Kearney spoke of sounds like a wonderful thing whereby we could go into a one-stop-shop and say this is my condition and ask what can I do? There is always the fear, however. It is like the social welfare fear of going in and asking for something. Sometimes it is the embarrassment. Maybe it is the disability awareness training that some people need to have to deal with people. We are not liars. Just because I look fine and look grand does not mean that I do not suffer with a problem or a disability.

There are costs associated with lupus. I am again very lucky. I have a wonderful family who supported me when I had nothing. I work every day but I only live to work because I have not got the energy to do anything else on the other days. Again, I am in the lucky position that I have a job but just because I have a job does not mean that I should be grateful, like I said, when other things are available to make my job easier. It would be wonderful if there were more people with disabilities throughout all Government Departments and people were being promoted within them. There is an initiative to get something like 20% of people with disabilities working in the public sector. If we could be-----


Ms Lorna McGreehan

There is no point putting somebody into a job and not giving him or her the tools to work with it, however. Those types of things will be absolutely fantastic. According to the Royal College of Surgeons in Ireland, in 2013 there were 1,500 people with lupus in Ireland, which is a relatively small number.

It is irrelevant but it is good to quantify it.

Ms Lorna McGreehan

There are lupus support groups but because of the nature of the illness, one is exhausted. People who are working and who operate the lupus support group are lupus sufferers. We cannot, therefore, always be the best advocate for ourselves and we cannot always advocate for others because we are all struggling day by day. The lupus support group does struggle and we are constantly relying on the kindness of strangers to donate to try to keep things going because it is funded by the members. That is difficult. I also work with the National Council for the Blind of Ireland which has been a wonderful organisation to work with. It is absolutely fantastic. I am currently doing an introduction to braille online course. Those services it has provided have been great. I am lucky to have the support of the NCBI with me. Again, those types of people are great but they are not always there.

I mentioned the lupus support group. It is difficult, but things have changed with social media. I was 17 when I was diagnosed and now, with social media, I have access to groups all over the world. That has been a complete eye-opener for me. I can discuss medication and so many things with my peers all over the world. Lupus mainly affects women and ethnic groups; black women are often affected. Are we the people who are forgotten about?

Ms Olga Wehrly

I thank Ms McGreehan. I loved listening to what she said. She is right, and it was a core point in my opening statement as well, that we are not being counted. That is really important. Judging by the Facebook groups, there are 2,500 people in the long Covid support group. That is a condition that has only sprung up in the past year and a half or two years. Then there are ADHD groups. There are 4,500 people in one of the support groups I am in for ADHD. That is 4,500 people who are not getting access to ADHD services. There are approximately 1,000 people in the EDS groups, but they are English speakers and they are all from the same kind of community. Peer support is amazing when joining these groups from around the world and you get access to tips that work and pathways to seek help. It is coming from the wrong place though; it should be community-based because it would be the best way. It should not necessarily be medicalised but it should be within our local health centres with our public health nursing teams or whatever so that one can access this information. It could even be online on the HSE website or Department of Social Protection websites.

I would also like to say that for us it involves a lot of form filling all of the time, just like Ms Ulpe was saying, and it includes printing costs and so on. Language is important and the forms contain a lot of jargon. They are written for people who work in these offices and were expected to read them and understand what they mean. They need to be in clear English and not everybody in Ireland has English as a first language. It is not only about the language in the forms, it is also about the tone. There is almost a sense of entitlement levelled at people. It is as if they are asking for something they should not have asked for. It is already demeaning enough to have to try to find your place in society without coming up against this barrier. I know these forms have been used for years but going forward they need to be made more inclusive of everybody to retain people’s dignity.

I think Ms Wehrly is being very kind. It is no excuse for forms to have a presumption of guilt built into them. There is no excuse for jargon in law either. I have been a barrister for only nine years and we were taught plain English and not legalese. A Department should do the same and there is a directive on that.

Ms Olga Wehrly

The UK is fantastic for that. All of the forms are in plain English there because they have had a multicultural society for such a long time. The statistics are important. The likes of Facebook groups are amazing resources but they can also be sources of disinformation and places where we can pick up the wrong ideas. One only has a finite amount of energy to spend but over the years I have gone down some weird rabbit holes trying various remedies in the hope they would work and then I realised I needed to stop. Having adequate resources is so important and saves time for everybody and you can trust those resources as well.

Another point was made about the groups that are managed. Everybody who runs these groups is also ill or has significant hindrances so it becomes a problem in advocacy because there is a lot of genuine fatigue. Nobody wants to take on the mantle of being the person who is co-ordinating the group, who will talk to the Minister and so on. It is hard for people in this area to be clear, to have a voice and to be consistent because we are all holding each other up and we are all tired.

That is a very good point.

I thank the witnesses for being with us and for sharing their experiences. This week we are hearing about another element of living with a disability that is overlooked. Chronic illnesses have a major and ongoing impact on people’s lives and the witnesses have clearly shown us that. Due to the limited time available I will only be able to ask a few questions but if there is time after these two questions I will come back in with a third one.

Ms Casserly highlighted the fact that Parkinson’s disease is one of the fastest growing neurological diseases and is expected to double by 2030. She rightly encouraged the Government to be proactive and invest in early intervention and community-based programmes now, which would be better for individuals and health services. Could Ms Casserly describe what kind of programmes she would have in mind or what would be useful?

Ms McGreehan highlighted that the mobility grant was stopped for new applicants in 2013. A new scheme was due to replace it but nothing has materialised yet. This is an issue that many of us will be aware of from our constituency work. Could Ms McGreehan elaborate on the significance of this grant and why it needs to be reinstated immediately. She points out that in some cases individuals have to use their annual leave for medical appointments. Given that some conditions require multiple appointments with different healthcare professionals, this is an indication of the reality of living with a chronic illness and of Ireland's poor worker rights. Does Ms Casserly think there should be a statutory right to take necessary medical appointments without affecting annual leave? If there is time I will have a question for Ms Wehrly at the end as well.

Ms Mary Casserly

On the multidisciplinary approach, what is needed first is an assessment for physiotherapy in order to see what one needs to do to manage this condition. I did not realise how important exercise was and now there is research and education on that. Years ago people were probably told to go home and sit down and that is the worst thing one could do for Parkinson’s disease. Some people think that walking alone is enough, but it is not. There needs to be a wider range of movements in exercise programmes for functions such as getting out of the chair, twisting and turning. Education is needed around that physiotherapy. Community-based exercise programmes specifically for Parkinson’s disease would help to prevent falls and would also have a social element that would connect people. Speech therapy is also so important. Once you start to lose your speech it is hard to get it back so specific speech therapy is needed. There is a programme called LSVT Loud, which is specifically for Parkinson’s disease and everybody should be put onto that programme straight away and they would learn the skills necessary to maintain their voices as they journey through this condition.

Counselling is also important. People are shocked when they get their diagnoses. One could be in the workplace and at the height of one’s career or one could be the main earner in the house and suddenly one might have to give up work. One might have children to put through college and expenses such as a mortgage and it is hard to cope and manage. Anxiety, stress and depression can be symptoms of Parkinson’s disease as well so counselling is overlooked in helping to cope with the disease. There is also occupational therapy and assisted technology. I want to touch on information for employers. If a worker goes to an employer and says that he or she has this condition, we must give the employer the skills to know what to do, what to say and how to help the worker. I know that is getting away from the community question but it is something I wanted to mention to the committee. We need more community involvement and the Sláintecare programme seems to have the right approach in that regard. People need to be kept away from the hospital system for as long as possible and they need to be given the skills to cope with this condition.

Ms Lorna McGreehan

I did not mention the mobility grants being stopped for new entrants in 2013. The grants I was talking about are assistive technology grants.

They are not available to people in the public sector; they are at the discretion of the employer. Private sector employers can access grants on behalf of their employees. It would be great if there was a national register of people who had chronic illnesses and a statutory entitlement to a day off to go to the doctor. I would probably have ten hospital appointments in Dublin. Taking ten days out of people's annual leave entitlement is a lot when they are exhausted. It is not fair on their partners because they want to go away for a couple of days but they are constantly in the car driving to Dublin. People go up to Dublin and are not even fit to go for a walk around St. Stephen's Green and smell the coffee. These issues are very important. I would like a national register of people with chronic diseases. Employers are afraid that people will take advantage of statutory days. The fear in some organisations is that people would get one up on the employer. We are not trying to get one up on anybody. We just want to live and work. We just want to breathe and be able to have a level playing field in all aspects of our lives. This would be great.

I have a question for Ms Wehrly. She was speaking about what seems like not enough recognition of EDS in Ireland. She referenced the UK, obviously acknowledging there being pathways for diagnosis. I do not know whether she has the information to hand and a written response would be great. What is it like on a European or global scale? Is Ireland a total outlier in terms of not really acknowledging it?

Ms Olga Wehrly

Anecdotally, I can give an example off the top of my head. Last week, I came across somebody in a parenting group who suspected she had EDS. She was presenting with many of the same symptoms. She was added to one of our EDS Facebook groups. She asked how she would go about getting a diagnosis. We said there is not really anybody she could go to and that she could try this or that. She is French. Within 24 hours she had contacted a doctor at home and had been referred for an EDS assessment in France. She had a plethora of appointments all lined up. She asked us whether she should go ahead and everyone in our community answered "Yes". We said it was like winning the golden ticket in Charlie and the Chocolate Factory. We just do not have it here.

With regard to the mobility grants, it is about issues such as personal care and assistance with bedding and stairs. It is not open any more. Many of these supports are very much geared towards people who own their own homes. This is a problem for many of us. I am a single parent and I do not have a partner to help financially. Those of us in private rental accommodation do not have an end point. We are stuck. We are in the private sector. We will never earn a huge amount because we are a little bit restricted. The retirement years look a little bleak at this point because there is no security. It is not about getting a handout and looking for money. It is about empowering us to be able to go out and build careers and lives for ourselves so we can provide for our families and have security.

Everyone knows why I wanted to be a member of the Oireachtas Joint Committee on Disability Matters. My sister inspires me. She is my driving force every time I engage with the committee and in every act I do in this regard. I thank the witnesses for coming before the committee. I am grateful for all of their comments. What has come across is being othered, not being heard, not being listened to and not having access to grants or equity in society. People cannot just get on with life. They feel like they are begging for their best self when their best self is theirs. They should be advocates and should have autonomy over their own futures and selves.

My question is for Ms Ulpe, Ms Wehrly and Ms Casserly. It is a general question. They have a hidden illness. I also have an autoimmune disease. How hard was it for them to get heard and listened to by the medical profession and even to be believed? On the outside people look okay but on the inside they are crumbling. People struggle along and they do not feel heard. What was the experience of the witnesses in getting diagnosed and the pathway to diagnosis?

The witnesses all articulated very clearly how they struggle constantly to get things and to get answers. Ms Wehrly spoke about Facebook groups and being brought down a rabbit hole. I have been that person too and brought down rabbit holes to think a cocktail of turmeric or parsley or whatever could help me. Many issues have been discussed. What three things would they change tomorrow? Would they include an independent advocacy service or employment rights and supports being moved to a different Department? Would they include a different attitude? How do we change from a medical viewpoint to a social viewpoint to help people, as opposed to making them sicker or to make them look like they are just a sick person or just a person with a chronic illness. We are very aware there is so much more to everybody than just one label. I thank the witnesses.

Ms Anna-Karin Ulpe

I thank the Senator for the question. It is crucial. Longing to be heard is a big thing. I saw ten different consultants over five years to try to get a diagnosis. It is so crushing to receive disbelief, hear people saying there is nothing wrong and that the only problem is that people are fat. I have been told this. I heard that I was lazy for getting my own wheelchair. I have been gaslighted so much that it is a wonder I am still alive today, to be honest. We have to be so strong not to disintegrate completely from all of this. The big thing to change is education. Everyone in the health service should be educated about ME, as should everybody working with disability and social care, so they recognise how ill and how disabled we are and how many accommodations we need to access basic healthcare. Getting this recognition would mean so much.

I will tell the committee what happened when I saw the first consultant who understood my illness and who listened to me. I was a beautiful May day, with flowering fruit trees all around. It felt like I had come to paradise because I was seen. I cried with relief in the car all they way back from Tullamore that day. It was a cathartic experience that finally somebody believed me and saw me and that now my journey to get help could begin. He helped me with all of the paperwork for housing. He got me medication. Everything started then. Five years of my life were gone totally, which made me worse. Now I cannot do much but before all this started I had begun to get a little bit better. I was able to do a little bit of light yoga and have more of a social life. Because of all the fighting, I do not know whether I will ever get back to that level.

Ms Mary Casserly

I thank the Senator for her comments. She asked about raising awareness. I spent many years thinking I had fibromyalgia and going to different physiotherapists. Like Ms Ulpe, when I eventually got my diagnosis, it was a relief to know I was not going mad and to have an answer as to what was wrong with me. There needs to be more awareness raising around disabilities and the fact that some of them are hidden. I sometimes feel we are like swans, looking calm on top but with hell going on at times underneath.

Financial assistance is an issue I want to highlight. Some people find it very stressful to fill out the forms, and stress and Parkinson's disease do not go well together. Why make it so complicated when people are in genuine need? In the case of housing adaptation grants, for example, it can take more than a year for people to get funding to make their home more suitable for them. Parkinson's disease is a progressive condition that is not going to go away any time soon. We are praying for a cure but there is none at the moment. Why put people trough so much stress and turmoil? A woman I know has an upstairs bathroom and has to get in the bathtub to have a shower. She lives on her own and could fall. We are hearing those sorts of things every day. Why make it so hard for people? Fighting for help is putting stress on people who are already coping with this condition. I do not think it is fair.

We need to have services and therapies available locally and we need more neurologists and nurses who specialise in Parkinson's disease. We need to have that care in between our yearly appointments. People go on medication, have side effects and are left wondering what is normal and if the side effects will calm down. Parkinson's disease is complex and we need to have a backup system whereby people can pick up the telephone and ask somebody what they should do, including whether they should tweak their medication, take it at different times or whatever else. We need that information but, unfortunately, it is not there at the moment. I thank the committee for listening to me.

Ms Olga Wehrly

I echo what the others said. With something like ADHD, it can take up to 60 years for people to get a diagnosis, especially women because they present quite differently from men. We are used to masking in society as it is, getting on with it and putting a brave face on things. I got fobbed off by GPs for many years in trying to access an ADHD diagnosis because it was kind of seen as some faddy American thing. I was told, "Sure, you do not need that; you look fine." With EDS as well, there is definitely an element of medical gaslighting because people are presenting with all these random, chronic issues that are not acute. You are not at death's door but there are niggly things that kind of are fine but kind of not. You are in and out to the GP all the time.

If I were to ask for three actions that would help, the first would be to have a register or database, as discussed earlier, from which people can take statistics as to who has what in this country. If we are not being measured, there is no way of knowing how we are progressing. It seems like a baseline requirement to have a register. Second, GPs are usually our first port of call and they are amazing, but their knowledge relates to general practice. With EDS, we call ourselves zebras because a zebra is the emblem of rare diseases. When doctors are in training, the phrase "Hear hooves, think horses" is often used because, generally, one should not assume somebody has the rarest disease because that is statistically unlikely. By and large, because of that, the exceptions, like us, may fall through the cracks. It would be helpful if GP knowledge were updated every so often. I find medical knowledge of EDS and ADHD has really increased in the past while. In the case of long Covid, however, I am still seeing people in the support groups whose GPs are dismissing them or who have had no access to apply to long Covid clinics because the GP is not paying to attention to information on it or may not even believe in it.

The third action would be around localised access. Obviously, it is not suitable for everybody but our health centres could be a really good resource. I know from personal experience that staffing is a huge issue but it would be great for people to be able to go to their public health nurse rather than having to book lots of doctors appointments when, for example, they want to check side effects of medicine and link in on a continuing basis. It can be exhausting for us to clog up the system and drain it for everyone else. There has to be an easier way to streamline things.

I thank all the contributors. The discussion has been a real education and something of an eye-opener for me, particularly when it comes to ME and Parkinson's disease. I was not aware how widespread they are and how difficult it is to measure their incidence. That is a real failing and flaw within our health service.

Regarding Ms Ulpe's contribution, it is very disheartening to hear how difficult it was for her to get a diagnosis. It is simply not right. She described as crushing the challenge of the diagnosis and of not having the high-level medical consultants available who specialise in these areas. It must cause many challenges within the health service. I support what Senator Seery Kearney said about accepting the letter and getting the committee to act on that. That would be a really strong statement and I am happy to be part of it.

Ms Casserly spoke about her experience with Parkinson's disease as feeling like she is a swan. As somebody who has had to navigate through the service, who was an unlikely candidate for the disease and who, because of her age group, did not have access to naturally occurring peer-to-peer mentoring, I am delighted she is getting help now and that those groups have provided so much support. Both Ms Casserly and Ms Ulpe spoke about the need for a database of organisations and, even more importantly, a database or register of patients. To use Ms Wehrly's word, that really needs to be streamlined. I think this committee can put pressure on the HSE to provide the resources to make it happen.

The need for a database of patients leads on to what Ms McGreehan spoke about as somebody who is working and making a huge contribution to the economy as well as battling many other challenges. Without additional leave, going up and down to Dublin or wherever else is putting people like her and Ms Wehrly under a lot of pressure. Action in that regard sounds very doable and it needs to happen hand in hand with the setting up of a register of patients. It should be relatively easy on an administrative level to make that happen if the will is there, and the budget, to do it. My question to the witnesses is what that would that look like in terms of the amount of leave - specifically, the number of days - that would suffice to start with and how that leave might be drawn down.

Ms Wehrly referred to housing adaptation grants. I would be really interested to hear how she thinks we could help with that barrier. If, for instance, we were to make the adaptation grant available to renters, does she think there would be buy-in from landlords? Would such provision be of practical assistance or do we need to think more outside of the box on this?

Ms Lorna McGreehan

The Deputy asked how many days of leave people might need.

We might need a register. I do not know how to quantify the number of days that might be needed. Some years, depending on my health, I might only see the doctor every six months, but if I am ill, I could do so every three months or every month. It is dependent on my whether my lungs are affected or my eyes or getting worse. I need different types of treatment. There has to be a compromise. I do not want anything for nothing. Those are small details in some ways. At this stage, we would be happy to take any scraps from the table. Anything that is done, does not have to be set in stone; it can be reviewed.

That makes a lot of sense.

Ms Lorna McGreehan

We need a register of people with chronic disease and disabilities. In terms of the pandemic and the vaccine, because I was dealing with a hospital outside of my area and the local health board had issued appointments to all of the people on its books who were chronically ill, they all got the vaccine before I did. The hospital in Dublin would not look after me. As a result, I had to wait until such time as my GP was able to administer it. My local health board was not aware that I have a chronic disease.

I apologise for interrupting, but is that because it is not on the long-term illness register?

Ms Lorna McGreehan

Lupus is not on the long-term illness list.

That affected Ms McGreehan getting a vaccine on time?

Ms Lorna McGreehan

I think it was because I did not attend a consultant locally. The local consultants looked after their patients, as one would expect them to do. In Dublin, the country bumpkins were expected to be dealt with locally. The GP tried to source a vaccine. I eventually had it administered at my GP's clinic, but there was a bit of a lag. If the HSE had an overall register of where each person with a particular condition is living, it could organise services accordingly and those services could feedback into the system with regard to the need for days off to ensure that people are not spoofing the system. Does that make sense?

Yes. That is very helpful.

I thank Ms McGreehan and I invite Ms Wehrly to respond.

Ms Olga Wehrly

I am a freelancer. I am self-employed but for some jobs, I am on PAYE. My employment is strange in that I work doing voice-overs and as an actor. Days off are not really an issue when you are self-employed, unfortunately. The days off are the days on which you are looking for work. There is another issue that has not been raised yet, but I think we can all relate to it. I find that in the workplace I am trying to come off as not having anything wrong because I do not want to be a burden. As there is an insurance element to it and I have to fill out an insurance form for every job I do, I want to be insurable.

Having had long Covid for the past year, I probably would not have been insurable to be on television or film set because I was experiencing a great deal of vertigo and other significant things. On the issue of days off and annual leave, I do not know it is works in that respect for somebody in my position. In terms of renting and rental accommodation, it is the broader issue of having insecure housing and relying on a private rental market. If we are relying on hyper-inflated markets and the housing assistance payment scheme which, at best, is dysfunctional, it is a precarious system. If one could find an amenable landlord, who would allow one to put rails in a bathroom and so on, it is not a long-term solution because the housing in itself is not a long-term solution. It is about bringing it back to the basics. We need housing, shelter and employment, all of which are core things. Days off and grants for adaptation are amazing but they need to be tied into something that is more suitable for our needs as a whole. I hope that makes sense.

It does make sense. I really appreciate that answer. Do any of the other witnesses have anything to add to that?

Ms Anna-Karin Ulpe

I thank Ms Wehrly for her remarks on the private rental sector. I previously lived in a private rental at first floor level. Most of the time, I could not get out of it because I could not manage the stairs. I had a wheelchair but my landlord would not allow me to store it in the lobby, and I was not able to get it up the stairs into the apartment. I asked the landlord if I could store it in the lobby where buggies were being stored - it was a big enough area such that nobody was falling over them. He stated that for health and safety reasons the wheelchair would be a fire hazard. I had to store it outside. I was lucky that it was not stolen, but it rusted. When you rent privately, you have few rights. It is you against the landlord. If there could be any accommodation provided for people who need mobility aids and have to live in private housing for however long that might be, it would be a help. Landlords should be allowed to refuse that.

That is really shocking.

Ms Anna-Karin Ulpe

The Irish Wheelchair Association was unable to provide any assistance. I was told that if the issue was that wheelchair would be a fire hazard it could not help. Some time later, we were issued with a notice of termination because the landlord wanted to sell. I do not have any family in Ireland and we had nowhere to go. We were facing homelessness at a time when I was completely bed-bound and could not even put my underwear in a bag. Were it not for our lovely neighbours, we would not have been able to move. They moved everything for us. My partner was still formally employed at this point and we were able to secure a new contract for the place we live in now. We were lucky in that nobody asked us for a P60. If that had happened, we would have been screwed and homeless. This type of stress makes my condition much worse. It should not happen. That is my comment in regard to private renting.

On the list of disabled persons, my concern is who would administer it? My GP refused to put me on the list of vulnerable persons, which I had asked him to do in order that I could get the Covid jab earlier. My GP said that because I was not immunocompromised, I was not at increased risk of getting sick. To be honest, I could not see myself surviving Covid. I already have so little energy that I feel like I am dying, so I would not even have the energy to cough. Covid would finish me off, definitely, but that is not recognised. If we could self-report, we could then, at least, put up our hands and say how many people fulfil the international consensus criteria for ME. The HSE would have to decide the international criteria for diagnosis it would want to use, because there is, as yet, no diagnostic test. The international consensus criteria would be a good idea. If we had self-reporting, this register would provide us with a fairly accurate picture of how many people are suffering. In terms of statistics, it is estimated that 70% of ME sufferers are unable to work.

I thank Ms Ulpe for sharing that personal story. It is quite shocking to hear that that was her experience. I appreciate her putting on the record because it is something we need to know if we are to try to deal with this issue from a policy perspective.

Ms Mary Casserly

I thank everybody for their comments. I would like make a point about days and time off work.

It is kind of tricky to know what the ideal number would be. I should point out that many people are afraid to tell their employers they have Parkinson's disease for fear or losing their jobs or not being treated equally. It is a big issue at times. How do people tell their employers? It is a risk some people are worried about taking. There may be stress in that and of maybe trying to hide the symptoms of Parkinson's disease, such as a tremor, making it even worse. They are the sorts of issues that arise.

As I said, I have given up work and I spend my time trying to do the things to keep as well as possible with Parkinson's. This includes exercise and alternative therapies. When I need to go to appointments in Dublin, my husband is self-employed and he can arrange to bring me. I am lucky like that because not everybody is in that position. This goes back to local services. People should be near the services they need and have access to a Parkinson's nurse and a neurologist. That is essential because how else can one make plans? It is great when we hear the Government is pledging money to the HSE but how is it going to be spent? We would not give €100 to a five-year-old child and a plan would be laid out on how it would be spent. It is great that today the committee is listening to us as patients and our voices in speaking about what we need. We really appreciate it and I thank the committee.

We appreciate the witnesses being here and I thank them.

I will make a few comments. Many of the witnesses spoke about data on chronic disease. We have heard at various meetings about the lack of data on disability. It is mind-boggling think how there can be any proper planning without such data. That is extremely important.

I find it unbelievable there is no diagnostic test for ME at this stage. I know people who have had ME for 20 years or more. It is amazing there is no proper diagnostic test at this stage and people are basically treated in a dismissive fashion, being told they are okay or look fine so they should go ahead and work and so on. Is much research being done on all the diseases or illnesses mentioned by the witnesses?

The cost of disability is coming up time and again and we hear it from everybody. It seems there is an assumption that people can survive on a payment of €200 per week or that they have a medical card covering GP and doctor visits, along with medication. As the witnesses pointed out, many other supports are needed, including assistive technology, physiotherapy, exercise classes or nutrition advice. None of that seems to be covered and it is not taken into account. That must be highlighted on a continuous basis to ensure it can be taken into account.

There is also bureaucracy around form filling and it affects so many people, no matter what payment people are applying for. It applies if they are applying for social housing or any sort of social welfare payment. The forms are so long and difficult and they must be put in simpler language and made easier for people to complete. They should be available in different languages to ensure that everybody can understand what they are applying for. So many people do not know what they are entitled to or what they should apply for. I spoke with a woman whose son had an intellectual disability. She did not know she could apply for the domiciliary care allowance. She had never applied for it in the full 16 years it was available. She should not have to know it and she should have been informed by the district nurse or whoever at the time that she had certain entitlements. There must be an easier way of informing people of what are their entitlements or what supports are available without somebody having to ask, look or rely on others, such as the peer support that we have heard about as being so important to direct people in a certain way and make them aware of what supports are available. That should not happen and people should be able to access all that information very easily.

Ms Anna-Karin Ulpe

I thank the Vice Chairman for those remarks around budgets for research. I am aware that the EU has recently increased the funding for biomedical research around ME but it is extremely underfunded all across the world. It looks like they are pretty close to a breakthrough in the Open Medicine Foundation to finding a diagnostic test. My brain is too slow to explain what it is trying to do but it is something the researchers can see in blood. It looks like they are close to finding it. Of course, it would be great if governments could chip in and help fund this because keeping us sick is also a cost.

I do not know for sure if Ireland funds any biomedical research for ME but I would be surprised if that was the case. I am aware of a recent study of the financial impact of ME. It is from 2020 and members could google the financial impact of ME in Ireland to find it. They could get an idea of the costs from that. It is a pretty small study but at least it is a start.

I will certainly follow up on that.

Ms Mary Casserly

There has been a certain amount of research in Ireland on Parkinson's disease. UCC is doing a study of services and where people are but the results have not yet been published and it is ongoing. There is much research worldwide and Michael J. Fox's foundation funds ongoing research into Parkinson's so we are always hopeful there will be a breakthrough soon. At the moment, there is not but our fingers are crossed on the research side.

Ms Olga Wehrly

There is some really groundbreaking stuff being done in the US on EDS. There is hope that a genetic marker can be found from the subtype hypermobility EDS, which is kind of classed as less severe.

My computer switched off and I had to restart. Deputy Higgins asked about days off from work. Many people with long Covid have surpassed their annual leave allocations and are now on to unpaid leave because they have taken all the sick leave they can. They are in a little bit of a quandary and that number will only increase where people are unable to work or do very much, as was the case for many of us. It is something that must be highlighted or addressed at some level because many people are just left floundering without income. They are stuck.

Ms Lorna McGreehan

There is much research happening worldwide in respect of lupus. I know many doctors working in conjunction with colleagues in other countries. That is great. The health service in the UK is doing research on dry macular degeneration, so there may be a light at the end of the tunnel, if you pardon the pun, when it comes to my vision. Again, we do not know, although we live in hope of a breakthrough. Having Michael J. Fox there leads to matters being highlighted.

We have heard that Lady Gaga's auntie has lupus, that George Bush's dog had lupus and stories like that. We grasp on to the highlighting of conditions by such stories or if somebody mentions his or her condition in a television interview. It makes people feel a little better if someone, nationally or internationally, mentions their condition, which highlights it a little more for people and makes them feel they are not alone. It is a matter of bringing everything together along with the research. I have always said to my doctors that if I can do anything to help by being the subject of medical research for them, I would do that. I would not mind. I want to help make this issue and everything better for people.

I thank Ms McGreehan for that. I thank all the witnesses for attending and for their very helpful contributions. It has been a very enlightening meeting. I hope the research works out. All of the them have been so cheerful and they have been a joy to engage with.

The next private meeting of the joint committee will be held on Thursday, 25 November at 9 a.m. followed by a public meeting at 9.45 a.m.

The joint committee adjourned at 11.52 a.m. until 9.45 a.m. Thursday, 25 November 2021.