"Call For Change"
Awareness and Educational event at Leinster House, Dublin
on the 24th January 2018.
Rachel Lynch's presentations given during the event: Listen here to Rachel's presentation ( first speaker)
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
Written Speech by Rachel Lynch
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.
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