Wednesday, 31 January 2018

Social welfare system and how it treats long-term chronic illness patients

Rachel Lynch's presentations given during the 

"Call For Change

Awareness and Educational event at Leinster House, Dublin

 on the 24th January 2018.


Listen here to Rachel's presentation - first speaker

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Also includes the presentation by Clodagh Lawlor – 18 year old Fibromyalgia patient. 
Second speaker at the event.

 

1.       Review of social welfare system and how it treats long-term chronic illness patients.
2.       Investigation into insurance companies who renege on payment protection policies. 
3.       Access to medicinal cannabis and off label medicines.
4.       Clinical lead and funding for maintenance of patient registry.
5.       Update of HSE website
6.       Education of medical profession and development of multidisciplinary treatment plan 


My name is Rachel Lynch and I am a volunteer support group facilitator with FibroIreland.  Fibroireland is a patient run organisation that provides support for those affected by Fibromyalgia. We are called FibroIreland because many find it difficult to pronounce and spell. Indeed there are far too many difficulties when it comes to Fibromyalgia. I have the condition myself and as such I am all too familiar with the gaps in care and treatment with regard to both social welfare and health care.

The DSP in Ireland provides a definition of the condition in its Protocol 6 document (2009, P38)

Fibromyalgia syndrome is a chronic condition, which presents as chronic generalised musculoskeletal pain, fatigue and wide variety of other symptoms.

On Page 42 of this document it states that Fibromyalgia is a chronic condition. Although symptoms may vary in intensity, the condition is unlikely to completely resolve.

Despite this statement Fibromyalgia is not on the long term illness list. Members of the European Parliament adopted a written declaration 69/2008 on Fibromyalgia. To date, nothing has happened in Ireland as regards implementing this declaration. The aims of this declaration is to raise awareness of Fibromyalgia and help develop a Community strategy in order to recognise this condition as a disease.

1. Review of social welfare system and how it treats long-term chronic illness patients.

My role in FibroIreland is supposed to involve helping people develop a multidisciplinary approach to managing the illness. Instead the bulk of my time is taken up with counselling people who are being let down by the social welfare system.  I have often spent months helping fellow patients get their sleep back on track only to have all that good work undone by one letter from the DSP.

FibroIreland undertook research in 2017 into the psychological affect on fibro patients of dealing with the DSP. Our findings were then distilled into three crucial experiences of being refused, stressed and stigmatised.

The psychological impact caused participants to feel a range of negative emotions such as guilt, shame, frustration, exhaustion, anger, humiliation and anxiety. Better training of Social Welfare staff and health care professionals as well as an appeals database would assist in avoiding delay, bureaucracy and spending. Participants in the study requested more transparency, flexibility, human interaction and guidance from the DSP. Key recommendations include the need to consider the challenges faced by those with Fibromyalgia in the workplace and to offer earlier interventions and accommodations to help them return to the workplace or retrain.

The following are patient comments:
I found it exhausting... It dragged on for way too long.  so it had a very negative impact on me, in that it used up and diverted energy .. I could have been focusing on getting well, and it caused me a huge amount of stress and uncertainty which exacerbated the relapses.

it's a really humiliating process..  it wasn't a pleasant experience… I am in a constant flare… The fight, the battle. It's just ongoing and it's one thing after another.

it’s hard to describe, but I feel like the Social Welfare, … if they could get away without giving you every bit of information, they tried to make it harder.

Patients maybe waiting up to 6 months to 3 years to get a disability payment and have to go through several rounds of appeals. It takes people so long to get the payment they are terrified to try to get back to work because if they have a relapse there is no safety net for them. The current system is pushing people deeper into disability. It is a false economy and the money the DSP are saving in the short-term is being lost as people are not given the supports to get back to work.

2. Investigation into insurance companies who renege on payment protection policies. 

Another area of difficulty for our members is insurance companies reneging on Payment Protection Plans. The whole point of payment protection is that it alleviates stress and should not be yet another battle to fight.  Several of our members are taking legal action against Irish Insurance companies.

Despite having the necessary medical evidence from Consultants insurance companies are placing our members under private investigator surveillance, making them do non-medical assessments and even when an independent consultant says that a patient is not  fit for work, the chief medical officer just ignores this and tells the patient that they are.  The insurance companies have put processes in place to ensure that they only have to pay a claim for the maximum of approximately 24 months and then the patient will be referred to the financial ombudsman.

3. Access to medicinal cannabis and off label medicines.
Access to medicine is particularly difficult for patients with fibromyalgia. The main reason is we are given medications that are ‘off-label’. Off-label use is the use of pharmaceutical drugs for an unapproved indication.

The HSE, on the advice of the National Centre for Pharmacoeconomics (NCPE), have ceased all reimbursement of Lidocaine Medication Patch 5% for most pain conditions and it can now only be prescribed for pain caused by shingles.

Patients are part of the check and balances system. Our patient organisation was not informed of this HTA, which meant we weren’t able to do a patient submission to highlight the importance of access to this medication. The NCPE don’t inform anyone when a medication is going to HTA. You are just expected to monitor the NCPE website. This needs to change and we need to have transparency and clarity as well as PPI in the HTA process. 

Whilst the HSE has saved money, it has come at a high cost to Fibromyalgia patients.  One of our members stated

‘I'm dreading running out of these patches, they are the only thing that work when the leg pain gets really bad, they enable me to get some rest during flare ups, I'm afraid of what's ahead of me.’

The action of the HSE was triggered purely by monetary considerations with a total disregard for the many who have benefited from its use.

Fibromyalgia patients are also being refused access to medicinal cannabis. Even though Fibromyalgia was mentioned 5 times in HPRA’s review of medicinal cannabis, not one fibromyalgia patient was consulted.  When asked as to why this was HPRA’s response was ‘they didn’t have time’. When someone says they don’t have time…what they really mean is that it’s not a priority. This is not good enough.

FibroIreland submitted a letter to the minister for Health regarding the need for access to medicinal cannabis. It took Mr Harris 5 months to respond with a standard template letter, which showed no indication that he, or any of his staff had actually read our submission.

This is one patient’s story:
 ‘I've tried cannabis on a few occasions and the relief I've gotten has been wonderful. My pain eases, my mobility increases and I sleep better. However I can't risk a criminal record even if the health benefits are immense so I wait frustrated in pain for Simon Harris to make his decision. My life is in his hands. Can you hear me Minister? Are you going to let me live, because right now I'm not living, this is merely an existence. Please recognise that we need access to medical cannabis and we need it now. We are patients, recognize our pain and don't make us criminals.’

4. Clinical lead and funding for maintenance of patient registry.
No research is being undertaken to find out the mechanisms that cause Fibromyalgia. FibroIreland is liaising with 2 Dublin Colleges who are willing to put together a patient registry. From a payer’s perspective a registry provides an actual use of procedures, devices or treatments in practice and effectiveness in different populations. From a regulatory perspective it provides post-approval studies e.g. evaluation of safety signals. From a patient perspective it means we have a better chance of getting the best treatment.  At the moment several illnesses are being lumped under the title of Fibromyalgia. This needs to be rectified. We would like the HSE to provide a clinical lead and financial support to maintain the registry.

5.  Update of HSE website
Six years ago a group of people with Fibromyalgia sat before a health committee and were assured the HSE website would be updated. This did not happen. The information on the HSE website is just a cut and paste effort from NHS material. If we think that it is acceptable to follow outdated information we will never be leaders in excellent healthcare. There is no mention of the importance of nutrition, which is one of the cornerstones of managing Fibromyalgia. The only link to a support group is one in Northern Ireland with none of the ROI support groups mentioned.

6. Education of medical profession and development of multidisciplinary treatment plan 
I was diagnosed in 2006. It had taken 22 years to get that diagnosis. My GP did not connect all my symptoms as part of an overall condition. Indeed he told me I was a lovely girl and if I just stopped worrying so much my health would be better. 50 years ago they used to think MS was just hysterical housewives. 30 years ago Lupus patients used to be institutionalised. Unfortunately the medical profession is not treating Fibromyalgia seriously. The consultant who finally diagnosed me stated that I could try 2 types of medication, they probably wouldn’t work and if I was feeling suicidal just go talk to someone. That was the extent of my treatment plan.

It gets worse if you are unfortunate enough to live outside of Dublin. The situation is quite dire in Donegal. In most cases a local gp will diagnose fibro but go no further. Referrals are often NOT made unless the patient requests it. Then waiting game starts. The main referral is to Manorhamilton, Co. Leitrim - on average a 2 hour journey for majority of patients. Patients are seeing waiting times averaging 2 - 4 years. Some severe cases will be admitted for a week to have physio but that waiting list is long.

Patients in Carlow have to travel an hour and a half to Waterford. They have to get three treatments in the one day such as physio, OT and counselling. This invariably causes a flare as it’s too much for the patient to handle all in one go.

We need better access to consultants for those in remote areas of Ireland. We also need assignment of a public health nurse to each patient to ensure maintenance of treatment plan as well as access to psychological support. Patients need support at a local level.

Conclusion
Many of the points I raised today were spoken about in 2012. It’s been nearly 6 years since that briefing and nothing has been done. The only thing that has changed for people with Fibromyalgia is that the situation in Ireland has gotten worse.

I really want to be proud to be Irish. We used to be called the land of saints and scholars. But we are a far cry from this. A measure of a society is how it treats its most vulnerable and as you can see from the information I am giving you today the system has been weighed and measured and found most wanting in the balance. The system will continue to be broken as long as you continue to ignore patients. Patients are being controlled, confined and cuffed. What we need is collaboration, connection and compassion. I am a big believer that with crisis comes opportunity. We are not a problem for you to turn away from. We are an opportunity for you to learn how to be better, how to know better and ultimately how to do better. 


.....................

Clodagh Lawlor – 18 year old Fibromyalgia patient

Ladies and gentlemen, my name is Clodagh Lawlor, I am 18 years old and I am from Carlow. I have fibromyalgia. I have had fibromyalgia since I was 8 years old, but only diagnosed when I was 16. My pain was often overlooked by different doctors who diagnosed me with severe growing pain that was supposed to fade within a year or two. They advised me to exercise more, even if I was unable to do so. I was told to push through the pain and that I would be better in no time. I never was. Eventually they did tests and finally diagnosed me with Fibromyalgia.
With Fibromyalgia, I suffer from many different symptoms, including back and muscle ache, which make me unable to do many things with my friends and family, and migraines which make me miss days in school and college. Sometimes I am unable to give my full concentration in class or in conversations with my friends due to pain, fatigue, or headaches. Because the list of symptoms is endless, it is hard for people to understand and/or believe that one person can be going through so much.

From the age of 12 I attended Crumlin Hospital, as it was the only place I could see a juvenile rheumatologist in the country at the time. I was waiting over 3 years for an appointment. I met the rheumatologist twice. The first time I met her, I was 12, and diagnosed with severe growing pains. The second time I met her I was 16 and was told I had Fibromyalgia, but she could not officially diagnose me with it until I was 18, so instead diagnosed me with Pain Amplification Syndrome and Hypermobility with Pain. Because I was 16, I was discharged from her clinic. I now attend Waterford Hospital for treatment and because it is a 2-hour journey, I have to take a day off from college and try and see my 3 therapists in one day. The long journey is both painful and exhausting. There, I have seen my rheumatologist twice, and although I waited a long time for an appointment, I have to say her, and her team are excellent. I see her team much more frequently than her, and they are all very understanding and supportive to my needs and condition.

Thankfully I have a very supportive mother. She suffers from the same condition I do and introduced me to the brilliantly supportive Carlow Fibromyalgia Support Group.

Many people do not understand why someone so young can be in so much pain or why I suffer greatly in many ways, especially because they can’t see how I physically suffer. Some think it is all in my head. They wonder things like how can I get so tired so quickly, or how the pain I feel can affect me so suddenly. For example, just last week I was sitting with my mam having our lunch and all of a sudden, my back went into complete spasm. I could hardly breathe with the pain. I went to a physio two days later, who performed acupuncture on me. Another two days later I had to visit my GP, who put me on very strong painkillers and gels, etc. I couldn’t walk on my own. I couldn’t dress myself. I could do nothing for myself. I missed college lectures for over a week. None of my friends could understand it. Because they’ve never heard of my condition, they don’t understand how it affects those who have it. None of my lecturers have heard of it and can’t understand why I am missing classes, requesting essay deadline extensions, why I can’t focus in lectures or tutorials, or why I can’t study or do notes like everybody else.

Growing up with Fibromyalgia was very difficult. I had to give up many sporting activities I loved. In school, my P.E. teachers never understood why I couldn’t take part if I didn’t have a doctor’s note because they could not see what was wrong with me. Fortunately, some of my teachers in Secondary School were understanding and supportive throughout my 5 years there. Some were incredibly helpful. However, some of my classmates were the opposite. They couldn’t understand why I could type my essays, exams or homework and they couldn’t. Why I was trying to look like a boxer when I had a supportive bandage around my hand to reduce the pain when I was typing notes in class. From primary to secondary school I got badly bullied because nobody could understand the unseen nature of my condition. I lost many friends. Many Fibro sufferers get depression, which affected me when I was in 6th year coming up to the Mock exams. This led to extreme isolation.

Overwhelmed by symptoms, it is hard to find the will power to get out of bed, let alone go to school, or socialise normally with my peers.

In the fibromyalgia community, there are some things we would all like to see change, this simply includes better recognition and understanding for this disease, shorter waiting times to see doctors, physios, specialists, etc. and for schools and colleges to have more funding available for better services. Any change, regardless how minor, would no doubt change the lives of fibromyalgia sufferers around Ireland for the better.
Thank you for listening.

I’ve had enough of the neglect of people with M.E.



Thoughts on life with M.E.

 The need for recognition and education

 by Moira Dilllon

"Call For Change

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Christine Fenton, MEme, Moira Dillon of ME Advocates Ireland
Christine Fenton & Moira Dillon of ME Advocates Ireland at
Call for Change event

Myalgic Encephalomyelitis (M.E.)  is often called an invisible illness.  

Much of what I go through daily with M.E. is not seen by my closest family and friends. When I’ve been ‘active’ they don’t see the payback, I suffer. I’m in payback mode now after a few events I took part in last week trying to raise awareness about M.E. in an Irish Government Building in front of Government Representatives. This payback is medically known as PENE or Post Exertional Neuroimmune Exhaustion. PENE is one of the cardinal symptoms and a defining feature of M.E. It is a flare-up of symptoms after physical or mental exertion, which requires an extended recovery period. A relapse like this can last days, weeks or longer.

This coming April is the 11th anniversary of my relationship with M.E. I was living life to the full until 2007. I had to give up many things including work as a Teacher in 2009 when M.E. progressed after two long years struggling with debilitating symptoms. It all started after a seemingly innocuous virus, twinned with the unrelenting stress of two surgeries. I recall always being unwell with chest and viral infections in the few years prior to onset. It took six years to find a consultant who knew about M.E. and was interested in treating a patient with M.E.  

M.E. remains misunderstood and invisible in the eyes of many of the medical profession as it’s not included in training in Irish Medical Colleges, despite the 1969 WHO classification as a neurological disorder. There is no national policy for M.E., no training in medical schools, no knowledge among medics, no specialist, no treatment available, no standard criteria being adopted, e.g. the International Consensus Criteria 2011 - no healthcare pathway for M.E. patients in Ireland.

M.E. is a disease that affects my body systems - energy metabolism, hormonal, nervous, endocrine, to name just a few. When I have an awful headache, collapse from exhaustion, ache all over, I’m the only one who knows this because I spend most of my time inside my home. I don’t have the energy to socialize very often.  Good management of my symptoms is vital to keep my symptoms in check and to prevent PENE. I practise the 'energy envelope theory' by self-monitoring and self-regulating my energy expenditures. By learning to pace my activity levels, I can stay within my “energy envelope”. I balance expended energy with available energy to reduce the frequency and severity of my symptoms as much as I can.

One of the hardest things to accept about having M.E. has been people’s misunderstanding and ignorance, that some people don’t take this neurological illness seriously enough. 


I’m mostly talking about primary medics and consultants. M.E. has been described to be as debilitating as late stage AIDS and MS and yet there is still ignorance attached to it. We do not have the energy to get through our daily lives never mind deal with the ignorance.

Not only do we see M.E. patients fighting what is happening to them, but we also see them fighting government agencies for access to care; the social stigma that has been given to the illness by poor science (PACE etc); irresponsible media coverage; and the huge lack of accurate information widely available to the public. The HSE has taken down inappropriate treatment guidelines from their website, after fellow patients repeatedly asked them to remove the inappropriate guidelines, but currently there’s nothing there to advise M.E. patients.  We need the HSE to listen to the experts, foremost to M.E. patients and to the medical experts. We need them to look at the hundreds of worldwide scientific research data that would enable them to draw up appropriate policy for people with M.E.

I am angry and saddened

I have friends with severe M.E. who are suffering daily but nobody knows they even exist. I am appalled by the absence of anything resembling humane treatment of these incredibly ill people, especially in the form of basic primary medical care. I am saddened but angry watching them suffer needlessly. I’m angry that the neglect of people with M.E is so profound that some severe sufferers have turned to ending their lives, to escape the terror and the pain of their existence with M.E. I see blue roses appearing as profile pictures on social media every time a person with M.E. has died. This has happened too often.

I’m angry that young people are losing their lives to M.E.  The most common period of onset in young people is from about the age of 12 to 17 years, but children as young as 4 years of age have developed M.E. It is unbearable that the world is losing those who never even got the chance to find out what they excelled at, or where their purpose was because their lives were stolen from them by an illness that makes them so profoundly ill.
A significant number of children and young adolescents with M.E. can never leave their houses or their beds. This makes them voiceless. Their forced silence is not anywhere near as quiet as the silence of those who have the means, and the ability, to help them.

I am angry at the distress I see people with M.E. going through as they repeatedly experience and witness suffering and marginalisation as they fight to survive their disease. I am angrier at the trauma I see people with M.E. going through as they witness the death of fellow patients.
I’m angry that people with M.E. - sick, disabled people, are being kept in such a situation- have been kept in such a situation for decades. It is a result of a fundamental indifference and an ideology that disregards the value of the lives of sick people and considers the price of action to be greater than the cost of their suffering.

The fight is enormous, and I am sick, but I’ve had enough of the neglect of people with M.E. and will do my bit to help. It is my raison d’etre. 

I am a member of a group of patient-advocates, called ME Advocates Ireland (MEAI). We joined forces with our small reserves of energies to raise awareness for M.E. to protest the lack of government recognition and medical/public education about M.E.in Ireland; and to demand health equality for the millions missing due to M.E.