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Dáil Éireann debate -
Thursday, 4 Apr 2019

Vol. 981 No. 5

Fibromyalgia: Statements

I welcome the opportunity to speak on the issue of fibromyalgia. I would like to begin by acknowledging the seriousness of fibromyalgia and the personal challenges that people with this condition encounter in their daily lives. There are many symptoms of fibromyalgia. They tend to vary from person to person. The symptoms can come and go over a period of time. The main symptoms of fibromyalgia include pain, extreme sensitivity, stiffness, poor-quality sleep, cognitive problems, headaches, irritable bowel syndrome and depression-like symptoms.

The exact prevalence of fibromyalgia in Ireland is not known, but it is estimated to affect approximately 2% of the population and nearly one in 20 people across the globe. Anyone can develop fibromyalgia, although the condition typically affects more women than men. While in most cases fibromyalgia occurs between 30 and 60 years of age, it can develop in people of any age, including children and the elderly.

The exact cause of fibromyalgia is unknown, but it most likely involves a variety of risk factors working together which can either make fibromyalgia more likely or act as a trigger for the condition to emerge. These include physical trauma, psychological trauma, a viral infection or depressive illnesses. Research into people with fibromyalgia has identified several physiological changes in the way their body functions. These include disturbed pain messages, low levels of hormones and sleep problems. What causes these changes in the first place and how exactly this causes fibromyalgia is still not clear.

Fibromyalgia is a difficult condition to diagnose as there is no specific test for it while its symptoms can replicate those associated with other conditions. There is no cure for this condition as its cause is unknown. A GP will diagnose fibromyalgia based on having a typical mix of symptoms and ruling out any other conditions that could be causing these. Once all other conditions have been considered or ruled out, there are two criteria which can be used to confirm a diagnosis of fibromyalgia. If symptoms fit within these criteria, it is likely a person will be diagnosed with fibromyalgia.

As fibromyalgia has several different symptoms, no single treatment will work for all symptoms and for all patients. It is, therefore, likely the person will need to try a variety of treatments to find the best approach that suits them. This will normally be a combination of medication and lifestyle changes. As well as medications that may involve pain medications and antidepressants, other treatment options can be used to help cope with the symptoms of fibromyalgia. These include exercise, cognitive behavioural therapy, psychotherapy, relaxation techniques, physiotherapy and psychological support. For most people, the symptoms of fibromyalgia are permanent, although they can vary in severity and frequency.

The overarching principle governing the planning and delivery of health services and supports for individuals with conditions such as fibromyalgia is that they should be integrated, as far as possible, with services and supports on a whole-of-population basis. Given the complex and diverse symptoms associated with fibromyalgia, treatment involves a combination of medicines, therapies, counselling and lifestyle changes. In line with the vision set out in Sláintecare, the Government’s aim is to ensure all citizens, including those suffering from fibromyalgia, can be offered the right care in the right place at the right time. Those with fibromyalgia should be supported in their local community wherever possible.

To facilitate this, the Government is committed to the expansion of primary care. This is reflected not just in the roll-out of primary care centres across the country but also in the increased funding provided for primary care services. An additional €50 million has been allocated to primary care in 2019, an increase of 6.1% on the 2018 budget. This additional resourcing will enable a range of measures to be advanced, including the recruitment of additional therapy staff such as physiotherapists and occupational therapists who can play an important role in supporting those with fibromyalgia.

I acknowledge the concerns raised by those with fibromyalgia that their expenditure on the medicines they need may not be covered by the public health service. In particular, I know there have been calls to include fibromyalgia as a specified condition under the long-term illness scheme. These requests have been considered carefully but there are no plans to extend the scheme at this time. However, it is proposed the scheme will be included as part of a review of the basis for existing hospital and medication charges to be carried out under commitments given in the Sláintecare action plan. While I understand this news will be disappointing to some, it should be remembered that there are several arrangements which provide patients with protection from excessive medicine costs. Those with fibromyalgia have benefitted from Government action in this area alongside others with long-term conditions.

The Government has lived up to its commitment in A Programme for a Partnership Government to reduce medicine costs for individuals and families. Those suffering financial hardship may be eligible for a medical card. In accordance with our overall eligibility framework, this decision is not based on a particular illness, but rather on the overall financial situation of an individual and family. Legislation allows for the HSE to exercise discretion in awarding medical cards in certain circumstances where an applicant exceeds income thresholds. The total number of medical cards issued as of 1 February 2019 was over 1.5 million. The Government has also ensured thousands of families, whose income levels are just above the thresholds for receiving a medical card, can avail of free GP visits by providing them with a GP-visit card. Over 500,000 people now hold such a card. The revised income thresholds which came into effect from 1 April will ensure more people will benefit from this support.

The Government has also significantly reduced the cost of medicines by reducing the annual required co-payment under the drugs payment scheme and reducing prescription charges for medical card holders. The maximum monthly amount that anyone is required to pay for their medicines under the drugs payment scheme is being reduced this month from €134 to €124. A similar €10 reduction was also applied in 2018. This means the annual financial burden on the average person who spends more than €124 a month on drugs has been reduced by €240 in less than two years.

We have also ensured prescription charges have been reduced in each of the past three years. The culmination of these reductions means that since 2017, co-payments in the community drug schemes have been reduced by 40% for over 70s medical card holders, 20% for medical card holders under 70 and 14% for drug payment scheme members.

The Government is determined to extend free healthcare to more people and reduce costs to others. However, it is doing this in line with the Sláintecare goal of universal access rather than targeting particular illnesses and conditions. I would, therefore, urge all those with fibromyalgia to check their eligibility for the GP-visit card at and apply for the drugs payment scheme at their local health office or through the website. It is my sincere hope that as many people as possible with fibromyalgia benefit from these measures.

Disability services provided by the HSE focus on enabling people with disabilities their full potential, living ordinary lives in ordinary places as independently as possible. The overarching principle governing the planning and delivery of services and supports for adults and children with disabilities is one of mainstreaming and inclusion. People with disabilities should be integrated, as much as possible, with services and supports for the rest of the population. The Government’s agenda in this regard is set out in the current national disability inclusion strategy which was launched by the Minister of State, Deputy Finian McGrath, in July 2017. The strategy takes a whole-of-Government approach to improving the lives of people with disabilities, as well as aiming to create the best possible opportunities for people with disabilities to fulfil their potential.

Our current health policy promotes a non-condition specific approach to disability service provision, based on the needs of the individual rather than the provision of services based on a specific disability diagnosis. I appreciate that for people living with this condition, there are many challenges. However, measures and supports are available. I am interested in hearing the view of Deputies on this matter.

I wish to share time with Deputy Eugene Murphy.

Is that agreed? Agreed.

I thank the Minister of State for her contribution. I welcome people directly affected by fibromyalgia to the Gallery. I thank them for taking the time to listen to the debate.

While I do not doubt the Minister of State's personal commitment to trying to help people with fibromyalgia, the speech's contents were more of the same lipservice, telling everybody all that is being done for them. That does little to dealing with the symptoms they have. We need to express more than hope when we are in executive positions as Ministers. We need to introduce tangible measures identified by physicians across the world, as well as those identified by the patient experience here.

I know from speaking to patients who suffer from illnesses, such as fibromyalgia and Lyme's disease, although I am not making a direct link between the two, they find it insulting when anti-depressants, psychology and psychiatry are mentioned, the implication being that it is all in their mind. People who experience the very real symptoms of these conditions deserve a little more than a prescription for anti-depressants.

I wish to read into the record an account of a friend of mine who suffers from fibromyalgia. It reads:

Fibromyalgia means that I cannot live the normal life of a 26 year old. I am in receipt of a disability allowance due to my condition worsening so much as to prevent me from completing my degree in college, maintaining a job and on bad days it prevents me from functioning daily tasks such as have a shower, brush and dry my hair, make meals and sometimes make a cup of tea as the tea cup falls from my grip due to nerve pain.

I have tested countless prescriptions such as opiates, anti-seizure medication, anti-depressants, benzodiazepines, non-steroidal anti-inflammatory drugs etc. From a very young age my consultants recommended that I have steroid injections, epidurals, rehabilitation surgeries. I have had two surgeries in the space of six years for my pain, the first at the age of 16. These surgeries were both emergencies due to the severity of my pain.

I have also had two rounds of rehabilitation within four years. I am very aware of what these toxic medications are doing to my body which plays on my mind daily. Devastatingly, my options with pharmaceutical medications are rapidly running out as they are slowly becoming ineffective. My consultant has stated that I have only two options left with pharmaceutical drugs until my options run out. Hearing this is a huge shock, and even more so to a 26 year old who has her whole life ahead of her. It affects my mental health and causes severe anxiety and low moods for which I am also on medication since my diagnosis.

In regards to new treatments I am depending on medical cannabis to become available in Ireland for fibromyalgia sufferers due to my pharmaceutical drug options running out. I believe that if pain consultant specialists in Ireland were given necessary training and guidelines to treat and monitor, they would be capable to assess the effectiveness of medicinal cannabis treatment for chronic pain sufferers. The HBRA's reasons for not supporting the inclusion of chronic pain is that "chronic pain is common, and the potential use of cannabis-based medicines by a large number of patients, raises concerns about misuse and diversion into the wider community".

The very high prevalence of chronic pain in Ireland is all the more reason to make new treatments such as cannabinoids with proven efficiency and fewer side-effects available to patients as soon as possible. Also the concerns about misuse and diversion into the wider community, while understandable, are not unique to cannabinoids. They also apply to opiods which have been prescribed for pain for decades. It is a fact that cannabis has significantly less abuse potential than many opiates and significantly less risk of overdose.

My consultant wants to give me the opportunity to try medical cannabis treatment with THC, the pain reliever part of cannabis. CBD will not be enough for me. The Government needs to set up guidelines for him to treat and monitor me safely through blood tests etc. That way I will be using THC safely. The compassionate access programme is not one bit compassionate as it is very restrictive and costly for patients having to travel to get their prescription for THC in the Netherlands. I would not be able to afford it, let alone that my health would not allow me to travel so often. It would also add to my stress levels which will in turn cause more flair ups for me too.

It is time that we stopped commentating on this matter and make medicinal cannabis available. It is available in the UK, in Northern Ireland, the Netherlands and other countries. Why do we have to bring up the rear in terms of proper treatments?

In 1992 fibromyalgia was formally recognised and included within the World Health Organization international classification of diseases. In July 2017 after the successful efforts of the Patient and Client Council of Northern Ireland the condition was declared a long-term disability in Northern Ireland and on 15 January 2019 recognition of fibromyalgia as a disability in the rest of the UK was debated in Westminster. Fibromyalgia is part of the wider spectrum of chronic pain conditions. It can be described as nerve dysfunction resulting from amplified processing of pain and sensory information. There is no cure for fibromyalgia. It is a lasting, life-long condition. Patients experience many different symptoms. The main symptom is widespread chronic pain which is very severe in many cases. Patients also experience severe debilitating fatigue, which is not to be confused with being tired but can be compared to what can be experience during a severe flu-like illness. It is not relieved by sleep.

Another symptom is what is commonly known as fibrofog, which describes cognitive issues such as memory problems, short attention spans, difficulty with focus and concentration, problems with word finding and slow speech. Patients often suffer from migraines, restless leg syndrome, irritable bowel syndrome, being unable to regulate their body temperature, hypersensitivity to sound, smell, light and other sensory information. Depression and anxiety often result as the condition can be very difficult to live with. It is not known how many people in Ireland suffer from fibromyalgia as there is no register. We need this to be resolved as soon as possible. The establishment of a register is of utmost importance, and financial assistance from the State is needed. Globally an estimated one in 20 people is affected, although numbers are likely to be higher. Fibromyalgia is an invisible disability which often makes it extremely difficult for patients to experience recognition by their families, work colleagues, neighbours and even their spouses and partners. Many patients are unable to work and depend on financial support, but they face enormous difficulties when applying for social welfare benefits. This must urgently be addressed as it causes enormous stress which is detrimental to the condition, causing a vicious cycle.

Fibromyalgia is a life-long chronic debilitating condition rendering many people unable to work thus rendering them financially dependent on the support of their families. It is neither recognised as a disability in Ireland nor is it recognised on the long-term illness list. The long-term illness list has not been changed in the past 40 years. Fibromyalgia emerged as a condition which absolutely deserves to be placed on this list. It is an extreme, demanding, expensive illness, and self-management including multi-disciplinary support is expected from the individual patient. I cannot understand how patients are expected to fund these treatments advised by the HSE itself.

On 11 July 2012 a group of fibromyalgia representatives briefed the Joint Committee on Health on fibromyalgia. On 24 January 2018 fibromyalgia advocates held a presentation in the AV room in Leinster House. Concerns may have been taken on board but nothing has happened and nothing has changed. Until recently the Department of Employment Affairs and Social Protection had protocol 6 accessible online, but this protocol has since disappeared. It discussed chronic pain and fibromyalgia in detail over 63 pages. One part mentioned fibromyalgia. It said that fibromyalgia is a chronic condition. Although symptoms may vary in intensity the condition is unlikely to completely resolve.

The Disability Act 2005 defines disability as "a substantial restriction in the capacity of the person to carry on a profession, business or occupation in the State or to participate in social or cultural life in the State by reason of an enduring physical, sensory, mental health or intellectual impairment". Fibromyalgia can render patients incapable of work, leading a normal social life and caring for their families. Severely affected patients may be unable to leave their house to walk, to shop or to drive, let alone to work to enable them to gain financial independence. These patients fulfil the definition in the Disability Act 2005 in every sense.

I ask for the Minister of State's support to have fibromyalgia classified as a disability. I have never had any doubt about her sincerity, as she is a very sincere person, but her Department and her senior Minister need to take this matter on board. There is a certain habit of mocking this situation which we must get out of. We must understand that many people suffer from this illness.

I express my thanks to Deputy Gino Kenny for bringing forward this issue for address today. I was pleased to sign Deputy Kenny's motion on fibromyalgia on behalf of Sinn Féin.

Ms Rachel Lynch from FibroIreland and Ms Joan Byrne from ME Advocates Ireland have reached out to me personally and to my party over a long number of years and we have always been more than willing to listen to their issues and try to advance what they seek to achieve. I thank them for their perseverance in advocating on behalf of all those contending with fibromyalgia in their lives.

On the HSE website, fibromyalgia is described as a long-term condition that causes pain throughout the body. In 2008, a declaration was passed in the European Parliament that recognised fibromyalgia as a disease. The World Health Organization had, years previously, also recognised fibromyalgia as a disease.

Fibromyalgia is an invisible condition. It does not show up in scans or blood tests, yet clinicians recognise that it is chronic, leading to muscle and joint pain, sleep disorder, mobility and lifestyle impact. Many sufferers go undiagnosed. Despite recognition by medical professionals of the existence of the condition, there remains, crucially, little recognition of it by the Health Service Executive. The effect of this is that fibromyalgia is excluded from the long-term illness list and without a pathway of care towards a treatment when it is recognised that a person is suffering from the condition.

Without proper recognition of fibromyalgia, many patients remain locked out of the social welfare system. On top of this, even after accessing basic social welfare provision, many remain out of reach of additional benefits, such as free travel and a medical card, to which those who have a recognised long-term illness are automatically entitled.

As Deputy Gino Kenny's motion states, it is estimated that between 90,000 and 180,000 people suffer from fibromyalgia in Ireland. Despite this significant number, there are no nationwide or specialist treatments available for patients. It is vitally important to highlight that many of those suffering with the condition are women, with a ratio of six to one on the basis of female versus male assessment.

To try to address this situation, it is essential that the Health Service Executive and other State agencies sit down together and decide, once and for all, on the basis of the clinical evidence available, if they are willing to officially recognise fibromyalgia as a disease. I make it very clear that there is only one answer that can be reached in such an undertaking. If this is to be the case, an adequate pathway of care, a treatment programme, an awareness campaign and associated funding must be put in place, including specialist clinical teams to treat the condition. This could also lead to the commencement of the collection of data, establishing best practices and expanding knowledge of the condition which will lead to better approaches and better treatments in time. Training and development for medical professionals is also crucial to aiding earliest recognition and diagnosis and the consequent treatments of patients.

One of the asks in the motion prepared by Deputy Gino Kenny and colleagues is that patients be facilitated in accessing medicinal cannabis as a treatment for this condition. Sinn Féin is certainly not opposed to this request, especially where there is clinical evidence to support the request and a prescription from a consultant or suitably qualified medical professional is available. It is something that simply should be done.

I thank Deputy Gino Kenny for bringing this issue forward. I also thank all those who are advocating for recognition of fibromyalgia and the changes in prescription practices that must come about. We in Sinn Féin remain open to assisting in any way we can steps towards recognition of and relief from this cruel and life-debilitating condition.

Bogaimid ar aghaidh anois chuig an Teachta Gino Kenny, who, I understand, is sharing time with Deputy Paul Murphy.

I welcome everybody in the Public Gallery to this important debate. I thank the Business Committee for agreeing to take statements on fibromyalgia, which is an important subject. I presume this discussion has been arranged on foot of the motion on the issue I submitted last week. I am disappointed with the number of Deputies who have turned up thus far. Many people are watching and listening to this debate and, more important, waiting to find out what the Government will do to address the issue. It means a great deal to many people who have this condition and they want to know what we, as legislators, will do.

For far too long, there has been an unhealthy silence on conditions such as fibromyalgia and myalgic encephalomyelitis, ME, which are all too invisible in the case of those who live with them. Although this is a cliché, people look perfectly healthy but inside they have to suffer from the chronic pain and fatigue that comes with fibromyalgia. While this debate has moved on in recent years, people who suffered from fibromyalgia, particularly women who are more often affected than men, were written off medically as hypochondriacs or, worse, people suffering from psychosomatic disorders. This was an insult to the sufferer and the condition.

I thank Ms Rachel Lynch and Ms Ursula Hakman from FibroIreland who have helped me understand fibromyalgia. I did not have much knowledge of the condition or of ME. Through their knowledge and experience, they have helped me and others to gain a greater understanding of the condition. I hope today will be the beginning of a much wider debate on fibromyalgia and its recognition as a disability in the State. Bizarrely, given the current discussions on Brexit and the artificial Border in this country, fibromyalgia has been recognised as a long-term condition in the North since 2016. If fibromyalgia can be recognised in the occupied part of Ireland, why can this State not recognise it? There is an ongoing debate in Britain on its recognition and while it is progressing, it has not yet gone far enough. Fibromyalgia must be recognised as a disability as this would result in patients having better access to services and medications and better dealings with the social welfare system. There are horror stories about people with fibromyalgia and ME being put through the ringer by the system. If fibromyalgia is not considered to be severe enough, the sufferer has to fight the system, which can make the condition even worse for those who live with it.

Other Deputies alluded to the long-term illness scheme. It is extraordinary that not one condition has been added to the scheme for 49 years. Surely fibromyalgia fits the bill for being added to the long-term illness scheme. The only reason I can think of that it is not on the long-term illness scheme is funding. It is as simple as that. While those with the condition may have a GP-only medical card, they must cover other expenses such as therapy and medications. It is ridiculous that the scheme has not been extended in 49 years. While that is a separate issue, it is incredible. Fibromyalgia is recognised as a condition in France and has been included on the country's long-term illness scheme, which means patients can get medication and so on.

There is major misunderstanding of this condition and addressing that is half the battle. The reason for this debate is to create a greater understanding of the condition because misunderstanding compounds fibromyalgia. To dismiss the condition is unforgivable.

I am no expert on fibromyalgia and I can only try to put myself in the shoes of somebody who has worked with chronic pain and fatigue. I cannot imagine that kind of constant pain. Relying on opiate-based medicine is not desirable and the long-term side-effects are completely detrimental. Alternative medicines should be found, particularly for treating chronic pain. Other Deputies have implied that it is extremely disappointing that with respect to chronic pain and the proposed access programme, medicinal cannabis was not suggested as a treatment. That is extremely disappointing.

I hope we can get one thing from this debate. We can have flowery debates and great speeches with nothing ever happening. After these statements, will the Minister of State meet a representative of each party so we can progress this matter? We are Deputies representing many people in this country who have fibromyalgia. Will the Minister of State meet representatives of each party in the next two to three weeks?

I pay tribute to the campaigners on this matter who not only must put up with the chronic pain that they experience while functioning in the world but also when they must campaign for proper recognition and assistance. That process includes debates like this in the Dáil, and I thank Deputy Gino Kenny for his work in raising the matter. It was essential in getting this debate to happen.

The Government's response is disappointing when we take away the words of understanding, care and so on. When we get to the bottom line, there is no fundamental change in the position. I looked at a question I posed to the then Minister of State at the Department of Health, former Deputy Kathleen Lynch, in June 2015 about extending the long-term illness scheme to include fibromyalgia but the answer was that there were no plans to extend the list of conditions covered under the scheme. The answer from the Minister of State today, four years on, is that the requests are being considered carefully but that there are no plans to extend the long-term illness scheme at this time. Effectively, there is no change. That is unfortunate.

When there are between 90,000 and 180,000 people affected by fibromyalgia, it is worth asking how the condition is so misunderstood, badly diagnosed and not recognised properly by the State. It is probably not an accident that it affects women and men at a ratio of 6:1. This is related to the fact that it is not recognised properly in a sexist society that tends to listen less to women. There is a new book called Invisible Women: Exposing Data Bias in a World Designed for Men that deals precisely with this question and how it just has not been addressed. That to which I refer is a factor in this matter.

I spoke to a friend and comrade of mine earlier, Ms Phil Foster, who suffers from fibromyalgia, about her experiences. For example, she said that approximately 15 years ago she was sitting her living room and tried to get off the chair but she could not stand up. She had to crawl on the floor to the kitchen and drag herself up by using the table for support. She described the condition as like having a tight Lycra suit in which one cannot move under her flesh and in her bones. She shared with me a picture of somebody whose back that was covered with bruises. The person was obviously wracked with pain. That level of pain exists but the problem is that it does not show. People might look at an affected person and think he or she is fine and wonder what is wrong, as it is not a generally or widely understood condition. It can come with other conditions, such as an underactive thyroid in Ms Foster, or anaemia. Her daughter is also affected by it. She spent six years trying to figure out what was wrong and she may have spent up to €20,000 going to different consultants and so on. She was forced to go private to try to find out what was happening. If we multiply that experience by 90,000 or 180,000 people, it is an absolute shame on the State.

The Government needs to go beyond uttering words of understanding; there must be action. We need access to medicinal cannabis for those affected by fibromyalgia and the scrapping of prescription changes, with all medications to be covered. We need the condition to be added to the long-term illness scheme. I echo the point made by Deputy Gino Kenny that it is utterly bizarre to believe that the world of medicine froze 50 years ago and that there has been no addition since by the State.

Deputy Pringle is sharing time with Deputy Maureen O'Sullivan.

I welcome these statements on fibromyalgia but I wonder how much attention the Government will be paying to Deputies' contributions. I know a large number of constituents are coming to me at my clinics in Donegal in absolute despair not only because they are dealing with an illness that is debilitating but also because their condition is not recognised by the State, particularly when it comes to accessing social welfare supports. Fibromyalgia is called the "invisible illness" for a reason, namely, it is difficult to diagnose and the causes are still not fully understood. It is invisible because there are no visible symptoms other than someone being bedridden due to pain or having his or her daily activities curtailed. As it is the so-called invisible illness, people undergoing diagnosis or applying for social welfare supports are made feel like they are liars. Fibromyalgia is not listed on the long-term illness list but it has been has been included on the international statistical classification of diseases and related health problems published by the World Health Organization since 1992. As it is not listed on the long-term illness list, people with fibromyalgia are essentially invisible to the State.

I spoke with Ms Caroline Tait, chairperson of the Donegal support group for people with fibromyalgia, who gave me a very in-depth account of the reality for someone who suffers with the condition. She stated that just getting someone to diagnose the illness in the first instance is an uphill battle. A person needs the diagnosis of a rheumatologist but the waiting list for that is so long, a number of years in some cases, that some people end up going to see a clinician privately in order to obtain a diagnosis. Not everyone has the means to do this and some cannot even get the condition recognised by GPs. If people are on medical cards, they cannot go to different GPs to get treatment. A long list of medication awaits someone once diagnosed with fibromyalgia and some of them do not work. Some people are being prescribed medication that is for other conditions, such as epilepsy, or antidepressants, which can lead to addiction or other side-effects. Furthermore, many people end up having to give up work due to fatigue and the pain they suffer. As many people have problems acquiring medical cards, their partners are put under increasing pressure to be able to afford the number of medications these people end up having to take. We know the level of suffering people with fibromyalgia go through and it is unnecessary.

First and foremost, the condition needs to be recognised as a disability. I repeat some of the calls made in the motion on fibromyalgia from a number of months ago and I urge the Government to once and for all establish an effective and sustainable model of care to diagnose, manage and treat fibromyalgia. It should develop a model of care that is based on international best practice and implement a strategy to set up a framework to help those living with fibromyalgia. The Government must conduct a review of the long-term illness scheme, which has not been updated since 1970, or 49 years ago. Perhaps for its 50th anniversary it can be updated. The Government should carry out a dedicated and rigorous review of the underlying causes of the condition while rolling out a comprehensive education programme for those working in social welfare who deal with people with chronic illness. This is vital in order that people can be treated with respect. The Government should also invest in community, primary and secondary care, as committed to in the Sláintecare report. Finally, the Government must do what is necessary to make this "invisible illness" visible and acknowledge what people are experiencing while living with fibromyalgia.

I acknowledge the tremendous work that has been done with certain illnesses. I refer to cancer, heart disease and even certain kinds of stroke. We know that with the work done and that the illnesses to which I refer do bring with them the death sentence that they used to bring. There are, however, illnesses in respect of which the relevant treatment has not advanced to the same degree and which has not kept pace with the progress made in treating cancer and heart disease. I can think of the people who suffer with Crohn's disease and colitis, as well as those we are discussing today. I acknowledge the work of Deputy Gino Kenny on this.

Like Crohn's disease, fibromyalgia is a debilitating illness that affects quality of life.

We know it means chronic pain as well as another spectrum of related symptoms like fatigue, cognitive dysfunction and reduced physical function. It occurs predominately in women, although it can occur in men. What is most frustrating is its unpredictability and inconsistency. A person can prepare for something he or she is going to experience frequently but it is very difficult when he or she does not know when it will come. Without being sexist about it, we know how much work women do in the home so we can imagine how much more debilitating it is for women than it is for men. When affected women get up in the morning, they do not know whether they will be able to do all the things they normally do or whether they will be struck by fibromyalgia, which means they have to rest or take to bed for the day.

We know some improvements are being made but they are not keeping pace with what is happening. Going back over decades, Governments have been guilty of taking a very poor approach to health so there is a lot of mismanagement in many sections of the health system. We have the highest spend per capita on health in Europe yet we do not have the health system that should keep par with that. We know that once somebody gets into the health system, he or she is looked after but getting in is the problem. It must be based on need, not ability to pay.

I read one piece from Arthritis Ireland about the condition. The people who suffer from this condition are deserving of much more than what they have received. It does mean that we need a more robust and flexible approach as new illnesses appear. I agree with what has been said about the long-term illness scheme and the need for a review of it. Reading the experiences of sufferers, it is obvious that there are so many difficulties for them involving diagnosis, care and treatment. From international best practice, we know there are examples of best treatment in terms of outcomes for patients. There seems to be a growing consensus around an interdisciplinary approach whereby various methods are implemented to improve the health of the patient. That is critical for fibromyalgia because this disease affects all aspects of a person's life, emotional and physical. I think we can learn what has worked internationally and apply it here.

Recognition has been an issue. Those who have both myalgic encephalomyelitis, ME, and fibromyalgia often have the conditions for quite an amount of time without realising they have these conditions. In many cases, they are diagnosed with mild fatigue or stress-related fatigue. We know that with the majority of illnesses, early intervention is crucial in establishing an effective treatment plan. This is where there is a need for public awareness. I know there is a publication on the HSE website but one wonders about the general population's knowledge or awareness of this issue.

Deputy Gino Kenny has called for the reform of the long-term illness scheme. It does not make sense why that scheme cannot be reviewed because treatments and medicines are constantly changing. Surely the review must keep up with that. We need flexibility when those changes are needed. Deputy Gino Kenny sets out some very practical and modest calls on the Government to take steps that could improve the lives of people who suffer from this condition. Surely this is what we are all about. We want to see a better quality of life for people suffering from an illness and fibromyalgia is one of those illnesses. I always find it very frustrating when we have statements or Private Members' business because we get a lengthy paper on it and the general reaction is "Tá" or "Níl" yet within those papers there are aspects on which we could all agree. There is a need to look at some of those, even to make a start with the smaller and more modest requests that are being made for those people who are suffering.

Fibromyalgia is a very difficult condition to diagnose and treat. I know that from my own profession. The difficulty in diagnosis, as others have said, is there is no clinical or biochemical marker that will give an exact diagnosis. Most commonly, it is a diagnosis of exclusion. Having gone through all the various conditions that could be leading to chronic pain and stiffness in muscles, one comes to a conclusion that it could be fibromyalgia. There is a prolonged process of elimination before one comes to the diagnosis so many of these patients will be referred on to rheumatology clinics and will have extensive blood tests, scans and X-rays. Eventually, when all other conditions have been eliminated, one is left with a diagnosis of fibromyalgia so it is a very unsatisfactory process to have to work through where one eventually comes to a diagnosis when one cannot find any other answer.

It is much more commonly diagnosed in the US than in Ireland, although it has become more frequently diagnosed here as the medical profession becomes aware of the condition. It can be mixed up with other chronic pain syndromes. It can be difficult to separate it from ME. As Deputy MacSharry noted, Lyme disease can masquerade as fibromyalgia. It is a diagnosis that is made over time nevertheless and sooner or later one comes to the conclusion that somebody is suffering from fibromyalgia. The difficulty then is trying to devise what the care pathway will be because, as Deputy Pringle and others said, it is an invisible disability. There is no outward show of it except for the physical manifestations of pain and muscular stiffness. In response to a parliamentary question in 2015, the then Minister for Health, Deputy Varadkar, spoke about fibromyalgia and outlined the variety of treatments that would be made available to people with the condition, including education, exercise, cognitive behavioural therapy and meditation. The Minister of State referred to how Sláintecare might deliver solutions for people with fibromyalgia. In quoting from Sláintecare, she talked about the transfer of many of our services from hospitals to the community but, unfortunately, the care pathways in the community to treat people with fibromyalgia are not available. In that regard, the national clinical programme for rheumatology was to develop a model of care for the treatment of rheumatological and musculoskeletal conditions, including fibromyalgia, but when that body produced its report in 2017 entitled The Model of Care for Rheumatology in Ireland, there was little or no reference to fibromyalgia in it. There was little or no reference to the pathways that should be provided for people who suffer from fibromyalgia.

The treatment for fibromyalgia is multi-faceted. As the Minister of State has outlined, it involves physiotherapy, occupational therapy, cognitive behavioural therapy, counselling, lifestyle changes and supporting people in self care. Unfortunately, we do not have access to physiotherapy in primary care. Physiotherapy is at a premium in primary care and in many areas, physiotherapy is only supplied to people who have been discharged from hospital after a fracture, surgery or major illness. People with fibromyalgia find it very difficult to get access to physiotherapy. Physiotherapy does not exist in many areas because we do not have physiotherapists to fill the posts. In the same way, occupational therapy is at a premium and is not freely available to people with conditions such as fibromyalgia. Cognitive behavioural therapy is extremely important for people with fibromyalgia. Psychologists and psychotherapists are not available to provide cognitive behavioural therapy in many areas. My area in west Clare has not had access to a psychologist for six years. People with fibromyalgia do not need to be treated by a psychiatrist. It is not a psychiatric condition but, unfortunately, many patients who suffer from fibromyalgia end up on sleeping pills, anti-depressants, opioid painkillers and anti-epileptic medications that have as a side effective some analgesic properties. This is most upsetting because quite often, the only avenue of treatment many GPs have is to prescribe these medications because physiotherapy, occupational therapy and cognitive behavioural therapy are just not available.

Unfortunately, many people who suffer from fibromyalgia end up on these medications - inappropriately in many cases. They then have two problems. They suffer from fibromyalgia and they are on medication which has substantial side-effects and may not have substantial benefits for them. Deputies Gino Kenny and Paul Murphy referred to medicinal cannabis products being made available to people who have chronic pain syndrome. Unfortunately, however, there is no class 1 evidence-based recommendation for the provision of cannabis-based products in the treatment of chronic pain syndromes. The scientific evidence to back it up is not there, unfortunately.

Deputy Kenny and I have many conversations about this. He is absolutely correct that the Minister is dragging his heels when it comes to providing an access programme for the three conditions. The Health Products Regulatory Authority has not found evidence that cannabis-based products are a treatment for pain. This is a debatable issue, however.

The Minister of State, Deputy Catherine Byrne, cited Sláintecare as a possible solution to the treatment of patients with fibromyalgia. Our health service is struggling to deliver acute urgent care. We discussed this here this morning when debating the problems in Limerick, where 81 people were on trolleys yesterday and 76 are on trolleys today. Those are unbelievable numbers and the problem is replicated across the country. While Sláintecare seeks to reform the health service, if the Minister of State is to cite Sláintecare as a cure or means of providing services to treat fibromyalgia, I can tell her for nothing that it will not do so today, tomorrow or the next day.

Another issue regarding fibromyalgia is that 50% of people who suffer from the condition are not working. They are lost to the workforce. This is not only a great personal loss to the individual concerned, but also a great loss to the State in that there is a cohort of people who, because the services to treat their condition are not there, are a loss to the workforce. I accept that the Government needs to address this issue through Sláintecare, but it also needs to front-load this in supplying the necessary personnel within primary care to deliver a service which is not a medication service. It should be a physical service, a psychological service and a support service. It should provide physiotherapy, occupational therapy and, in particular, cognitive behavioural therapy to people who have this condition in order to help them to cope with it. The failure of the Department of Employment Affairs and Social Protection to recognise it as a condition is also unbelievable. Many GPs are left signing people off work for musculoskeletal conditions, but one cannot put down the word "fibromyalgia". That is unacceptable in this day and age. No one wants to be labelled with a term which the State fails to recognise, and fibromyalgia is one such condition.

Fibromyalgia is a condition that is not receiving particular attention, and I thank Deputy Gino Kenny for introducing this debate. The Minister of State needs to recognise the condition. This encompasses the holistic approach we should have for care in our community. It should be community-based and built into Sláintecare. However, Sláintecare has so many problems before getting to fibromyalgia that the Government must specifically target resources towards it.

We now move back to Fianna Fáil. I call Deputy McGuinness.

I am sharing my time with Deputy Michael Moynihan.

Is that agreed? Agreed.

The easiest way for me to capture what people think about this is to read from a letter I received from a constituent in January. The content of the letter represents what most people would write in their correspondence, and I have received numerous letters about the campaign to have fibromyalgia recognised. This lady writes to me about her son, who is 46 years of age. He has had the condition for nine years. He was a schoolteacher but his condition got so bad that he was forced in 2017 to take a career break, which was not paid. His pain and his condition worsened. He continued his course of medication and continued to do all the things that the various websites and Facebook pages suggested to alleviate the pain. He was on illness benefit of €197 trying to pay a mortgage and keep a roof over his head. On his doctor's advice, he applied for a medical card in 2008. It took six months for the card to come through. As the condition is not recognised, there is no way he can be dealt with in the context of defining the disease and then giving the prescriptions, looking after the management of the pain and so on. It is hugely difficult, and this is someone who is trying to work. This lady finishes her letter by saying he is not a lazy person and never has been and that she cannot comprehend why this Government is doing absolutely nothing about this.

That was in January 2019. Since my election to this House, and particularly in the past ten years, huge efforts have been made by the various organisations that represent those who suffer from fibromyalgia. In the Minister of State's own words, all she is doing here, with respect, is explaining that she is listening to Members and that she understands the symptoms. She went on to talk about primary care services, disability services and so on. In reality, however, these people suffer in silence. Their quality of life suffers greatly. As other speakers have said, because of the medication, the pain and the fact that they cannot fully participate in their work or lives, they also end up on antidepressants. The time has come for the Government to recognise this disease and the fact that the World Health Organization recognised it in 1992. Once recognised, a pathway to care must be put in place that is easily accessible and supported by a medical card and an understanding at primary care level in order that the services can be provided without hassle and with the full support of the patient.

On Sunday, 7 April, from 10 a.m. to 4.30 p.m., in the Woodford Dolmen Hotel in Carlow, there will be a presentation and a full day to try to assist those with fibromyalgia to understand what they are going through and to give them the necessary supports. While all this is going on in the public domain, supported by people who understand the disease and are campaigning to have it recognised, the Government is doing nothing. Debates such as this are extremely useful because they help to highlight the issue, and I thank Deputy Gino Kenny and other Deputies for ensuring that this debate was held in this Chamber. However, the measure of this, from the public's point of view, will be the action the Government takes, having listened to all of what was said here today. What every single speaker said could be repeated over and over again because it reflects the experience of the individual who is suffering continuously the pain we are all talking about.

There is a need to inform GPs and set out a pathway to care and to support financially the care that will be required. There is also a need for the Government to finally take action on the 1992 decision of the World Health Organization, take its head out of the sand, listen to patients and take the appropriate action arising from this debate.

I welcome the opportunity to speak on these statements. As practising politicians, all of us encounter daily, and have done over the years, many people who suffer from fibromyalgia.

The difficulty people have is that they suffer from this condition but the doors are closed when they seek help. I refer to medical cards, disability supports and all of the avenues the State has open to it to support people with long-term debilitating illnesses. The World Health Organization, WHO, made its decision back in the 1990s. We are now facing into the 2020s and there has been no recognition of fibromyalgia by the State. People suffering from this condition who come to me must try to manage it medically and physically and when they seek help they find that fibromyalgia is not listed on the long-term illness scheme or recognised as a disability. That hurts them and makes their lives extremely difficult. They all want to fully participate in society and be out and about but this condition is holding them back. Fibromyalgia is not being recognised when people seek help from officialdom. It is almost as if the State is telling them that, from an official point of view, their condition does not exist. That is having a detrimental affect on their psychological and mental well-being.

Many of those who contact me looking for medical cards and disability allowances are very frustrated. They often have major medical expenses and low incomes. As my colleague stated, many people with this condition have to give up work at an early stage and take a career break or time off, which causes financial loss to households. All of that leads to individuals' self-worth being diminished and affects their inability to participate fully in society. They would love to be able to do that but this medical condition means they cannot do so.

We have had statements from Deputies from across the political spectrum who are willing to stand up and give the testimony of their constituents. We have heard the facts, including people who are frustrated by the system contacting Deputies. We have been told those people have made appeals to the Department of Employment Affairs and Social Protection. Many Members have sat in front of appeals officers and explained what their constituents are suffering from and how debilitating fibromyalgia is. The issue is that officialdom is not recognising the condition.

The Minister of State has to do two things when she responds. She must declare that the State and Departments will recognise fibromyalgia as a long-term illness and she must indicate that any and all medical and financial supports will be provided to the individuals in question. Their suffering is being compounded by not having full recognition of fibromyalgia. It is long past time such recognition was given. We can have all the debates we want. The reality, however, is that people's suffering will continue if the Minister of State is not in a position to state that fibromyalgia is a long-term debilitating illness. Those who suffer from the condition should have access to the supports that are available to those who suffer from other classified illnesses. They should not have to fight for their entitlements.

It is difficult enough for people to accept they have this condition without having to fight for help and support from the State. Every one of those people will say that one of the biggest problems they face is having to fight repeatedly for their rights. It is one of the issues they feel low about. I am asking the Minister of State to take cognisance of the contributions from across the political spectrum. We must support people suffering from fibromyalgia and recognise they are fully entitled to whatever supports the State can provide.

I thank Deputy Gino Kenny for facilitating this important debate, which many people will be watching from their homes. Everyone who has spoken referred to being contacted by constituents suffering from the long-term condition of fibromyalgia. One of the things they say most often is that this illness makes them prisoners in their own homes. Having their voices heard is part of the battle for them. Deputy Kenny is to be commended on giving voice to those people today. How difficult this condition is to diagnose has already been described. It is diagnosis by elimination. People have probably been suffering and in pain for years by the time they get a diagnosis from their doctor.

Deputy Maureen O'Sullivan made a good suggestion. While it may not be the Government's position to accept everything said here today, there are some suggestions that could be progressed. Some changes could be commenced in order that something positive can come out of this debate for those people suffering with this condition. The Government should examine what elements can be progressed and what can be done, rather than dismissing everything out of hand. Some thought could be given to how progress can be made. As others have said, it is not good enough simply to have nice words. There needs to be some action.

Many of those who suffer with fibromyalgia are also advocates for the legal use of medicinal cannabis because they believe it alleviates their pain. As well as asking about normal constituency matters, many of those with fibromyalgia who contact my office ask that some progress be made on making medicinal cannabis readily available where it has been prescribed by clinicians. Sinn Féin supports the legalisation of medicinal cannabis where it has been deemed medically necessary for a patient, in consultation with his or her parents or guardians, for ailments such as fibromyalgia.

The issue of medicinal cannabis is one on which there is a wide range of views and opinions. Some of those have already been expressed today and we are aware of them. This issue should, however, always be viewed from a medical and health perspective. We should always defer to medical experts and patient advocacy groups on these issues because they are on the front line. We may all have an opinion but it has to be informed by those who dealing with the issue daily, namely, doctors and campaigners. We need to find out if there is scope for medical professionals to learn more about progressive improvements in education on medical cannabis for medical purposes. That would be a beneficial job of work for the Government to undertake to ensure health professionals are made aware of all of the information and have access to the same kind of information as their colleagues. That should be facilitated by the Government.

Such improvements will benefit medical and healthcare professionals, as well as their patients, many of whom are crying out for legislation on medicinal cannabis. One such person is Vera Twomey, who has been a tireless campaigner for her daughter, Ava. Ms Twomey will confirm that everything is a battle. She has fought all of the way and continues to fight. She should not have to do that. We need to ensure these changes are introduced and this debate goes hand in glove with calls for legislation on medicinal cannabis. We also need to look at the long-term illness scheme. It would be remiss of me not to mention this issue, which others also raised. The scheme is nearly 50 years old and it has reached the stage where it should be re-examined. No one in this House, on any side, is in a position to defend the scheme.

Coming back to those who contact my office and the offices of all other Deputies and are at home in pain as they watch this debate, it would be good if we had something positive to tell them, rather than just nice words. I reiterate and agree with the call made by Deputy Maureen O'Sullivan. I ask that these suggestions be examined by the Government. They need not be undertaken as a whole if the Government cannot support doing so. The Government should, however, examine individual elements on which it might be possible to make some progress. It might be possible then to have something positive to report that will result in some action being taken for those who are suffering with fibromyalgia.

They suffer in silence. The chronic pain people suffer has already been described; I do not need to go into it. I am in receipt of the same emails as everyone else, emails in which people describe what it is like to live with a debilitating ongoing condition. It would be good if we had something positive to say to those people as a direct result of this debate.

I will make some remarks after I have read from the written statement. This is not my remit; I am here on behalf of the Minister, Deputy Harris.

The Minister is like the invisible man these days.

That is the Deputy's opinion. I cannot comment.

The Minister of State is here however.

I thank Deputies for their contributions to the debate on fibromyalgia. I acknowledge the personal challenges faced every day by persons with the condition. I thank the many people who have shared their experience of the condition with Deputies and with myself. As was outlined earlier, fibromyalgia is a difficult condition to diagnose as there are currently no specific tests for it. Symptoms replicate those associated with other conditions. There is currently no cure for this condition as its cause is unknown. Treatment of the condition requires intervention from various medical specialists in order to manage associated symptoms when they arise. This was outlined by Deputy Harty.

To help sufferers of this condition with the cost of their treatments, I reiterate that any patients are eligible to apply for the drug payments scheme or a medical card. Under the drug payments scheme, no individual or family pays more than €124 a month towards the cost of appropriate prescription medicine. The scheme significantly reduces the cost burden on families and individuals who incur expenditure on medicines. People who cannot without undue hardship arrange for the provision of medical services for themselves and their dependents may be entitled to a medical card. In the assessment process the HSE can take into account medical costs incurred by individuals or by their families. People who are not eligible for the medical card may still be eligible for a GP card, which covers the cost of GP consultations. General medical services are provided by GPs. If the patient's clinical condition warrants referral to a consultant, the GP will organise that referral for the patient.

While there are no plans currently to add fibromyalgia to the list of conditions covered under the long-term illness scheme, patients with a condition not listed under the long-term illness scheme are eligible to apply for the drugs payment scheme or a medical card. It is proposed that the long-term illness scheme be included as part of the review of the basis of existing hospital and medicine charges to be carried out under the commitment given in the Sláintecare implementation strategy.

I am aware that a number of parliamentary questions have been tabled in respect of disability services. Access to disability services is based on need rather than on diagnosis. Our current health policy promotes a non-condition specific approach to disability service provision based on the needs of the individual rather than on a specific disability diagnosis.

It is interesting to note that self-help for fibromyalgia is important and that there are several lifestyle changes which can help to relieve symptoms. A GP or other healthcare professional treating a patient will typically be able to give advice on and support in making these changes a part of the patient's everyday life. As the Minister of State with responsibility for health promotion, this is an issue that is close to my heart. Promoting the health of the population to prevent illness is an essential part of the Sláintecare strategy. As I announced earlier, €50 million has been allocated to primary care services in the Sláintecare strategy. These additional resources will enable a range of measures to be advanced, including the recruitment of additional therapy staff in psychotherapy and occupational therapy. Last month we published the 2019 Sláintecare action plan, which includes a plan to continue the implementation of Healthy Ireland across Government and wider society as well as within the health service. The Sláintecare action plan also sets out our ambition to build on our engagement with citizens on how they can empower and enable themselves to look after their own health and well-being.

The speech I read was written for me but I would like to add a few remarks. As always, I have listened carefully to the concerns raised, to the views expressed, and particularly to the personal statements which some Deputies spoke about this afternoon. In response to Deputy Gino Kenny, I am a not a doctor so I will not comment on medicinal cannabis or its uses. The Deputy mentioned in his speech that in 2016 fibromyalgia was brought under the equivalent of the long-term illness scheme in our neighbouring countries. I will mention that to the Minister. I will also mention that the World Health Organization and the European Parliament have recognised fibromyalgia as a long-term illness. With regard to his appeal for me to meet with himself and other Members on a cross-party basis, I have no problem in doing so but I believe the Deputy should meet with the Minister, Deputy Harris, because this issue does not come under my remit. I have been asked to step in this afternoon. I give my personal commitment that I will sit in on any meeting between the Minister and the Deputy. I will bring the Deputy's requests to the Minister.

That is all I have to say: I cannot add much more. I personally cannot give any explanation as to why fibromyalgia is not seen as a long-term illness. I have taken a lot of notes on the contributions of the Deputies who spoke with passion about this debilitating disease. I myself know people who have fibromyalgia and it is a debilitating disease. I will bring the Deputies' concerns and views to the Minister and ask him to reply to Deputy Gino Kenny directly regarding the meeting.

On a point of order, we are making statements rather than discussing the motion I have in my hand, but I request that the Minister of State ask her colleagues in Government to take up this motion and table it themselves. They may choose to modify it, but it really goes to the crux of the matter we have been discussing. I appeal to the Minister of State to bring the motion back to her colleagues so that Government can table it and so that we can get consensus on this issue.

I will talk to my colleagues about it.