A Time Of Great Change

It has taken a good six weeks of tears and sadness to come to the point of balanced acceptance; that my life has changed forever. My journey began in September 2012 with the help of my twitter and facebook friends we began to put pressure on Dr Reilly regarding the health service cuts, I am a victim  of the cuts living in chronic nerve pain, a pain that was being fed with the strongest pain medication  on the market. I turned to my online friends and with your help I managed to keep going.

In early December my body began to fail under the pressure of fighting for my rights and eating pain-killers, it was all too much.  The multiple sclerosis ravaged may brain and left me a paraplegic. At first all my anger was directed at the government, I was grieving for the loss of who I was and until I had gone through the stages of grief, I could not begin to heal. I took the happy pills for a few weeks but this was a journey that required me to feel, I did not want to accept this I ‘never’ wanted to accept it I was comfortable  walking with a stick now I have my 3 wheel scoota! I wont lie and say I woke one morning and it was all wonderful, it is not and never will be. I have cried sat in silence for hours filled with regret for all the stuff I haven’t done I will never fully accept what has happened I am still trying to find balance.

I am getting stronger each day I have good friends and family around me and I will not give up the battle for those of us living in unnecessary pain to save money for the Germans! My life has value I had the time out I needed to take on the fight again, not just for myself but the thousands voiceless Irish left to rot at home alone. My physical ability may have changed but my passion to shout out against the injustice being doled out daily by the HSE is as strong as ever so watch this space.

Everything Changes

This time last year I was full of hope for the future, I was back in college doing a level 7 train the trainer. I had plans for a business I was going to work in the corporate and community sectors, I even designed a program called A Better Tomorrow the plan was to help people cope with stress and achieve their goals; life was looking good for me.

Early August was when the subtle changes began a little drag of the foot I never even noticed it was my GP who first mentioned it. Then Reilly made his vicious cuts to the health system. The pain infusions of lignocaine I depended on to keep me pain-free was no longer available every six weeks I was having to live with chronic nerve pain which meant I had no choice but to take the strongest painkillers available. I was living like a rabid animal wanting to cut off my arms and legs to stop the unrelenting burning pain, I was also fighting the HSE to treat me the stress was unreal, it was the stress that caused my relapse and robbed me of my physical abilities. I walked with a stick for the past eight years, I functioned in society I lived a near normal life; not anymore.

My relapse hit my brain stem and lower spine, I can’t walk anymore and my bladder has a mind of its own. I went into hospital last week for treatment and tests, late Tuesday afternoon my neurologist sat with me Steve and Keira had gone home so I was to receive this news alone. The damage to my brain stem and spinal cord is severe and you don’t recover from lesions in these areas! My brain had escaped without any new lesions but straight up I will never walk again no more than the few steps I can take with my frame, this is as good as it gets!

All my dreams are gone, the plan is to make me a little stronger to run the wheelchair, I will still have the pain that is for life so every month I will be fighting the system for treatment while trying to adjust to being a wheelchair user, I have to apply for disability for the first time in my life and my chances of ever working again are almost nil.

This didn’t have to happen if I had not had to fight for treatment for my pain I wouldn’t have had the stress and the painkillers causing weakness to my body to the point the ms was free to attack at will. I am still in pain and taking tablets like smarties. I will be having my lignocaine on Wednesday two months after it was due! Thank you Dr Reilly your so called attempts to save money have left me having to rebuild my physical and emotional life, the stupidity of your decision will end up costing many thousands more than my €34 lignocane infusion as I will now be using services for the first time and attending more appointments than ever before. Nice one James!

Time to Accept Change Enter Life Number 4

Time to Accept Change Enter Life Number 4.

Time to Accept Change Enter Life Number 4

After my admission into hospital on Monday morning I spent the day being subjected to long overdue tests, I sort of knew the official outcome well in advance but what I think and the Neuro confirms are two completely different things.

Late on Tuesday afternoon my Neurologist and his latest trainee arrived to deliver the verdict, my most recent MRI is not good and along with the two brain stem lesions I have a couple more in my lower spine. The good news is my brain is in very good nick a few old lesions that play about with my eyes from time to time but nothing to worry about.

This time the is no promise of a fix but a plan to build up my strength, I need to reduce my stress levels not something I see happening anytime soon, not unless the Government walks and society learns to care. I have worked all my life and for the first time I am about to apply for disability I have a right to be treated with dignity and respect as this process will be far from easy for me there is an element of failure of becoming what I have always hoped I would never be ‘a person with a disability’ people change, job opportunities are less, you get talked about and over in you presence!

I am now officially disabled and a wheelchair user but I am no less intelligent than I was before this relapse I have a voice and let no one ever try and shut me up. Once my treatment is over I plan to get my head down next week and write my long awaited trilogy of books, my daughter wants to design the cover so I may actually self publish even though I have a publisher interested we all know kindle is the way forward.

So I had so bad news and my street dancing days are over but I have a cool little scooter and cant wait to become the woman in the purple coat with the yellow hat. I always have been a socialist activist and plan to put more effort into this area of my life once i am well enough. I received the appointment for my lignocaine infusion on March 13th so once I get over the iv steroids I should be pain free for a month at least and hoping to get hubby to take me to Dublin for the march. I am still going to the EU with the 1 Plus 100 petition for the patients charter to be ratified, so don’t forget those email I desperately need to make it happen.

Right to Life After Birth

Last night I cried myself to sleep I was guilty for feeling sorry for myself when so many Jack & Jill Children need help. You see I knew one of their children and in the short time I spent in his company I fell in love with him.
Jonathan Irwin is one of life’s living Angels, the families who his foundation helps feel blessed to belong to this special group.

*I have changed names and places I am sure you will understand why.

I went to meet Jake’s family near Sligo around May 04 the plan was to spend a day with the family divided into two half days so I didn’t get in the way, in the first five minutes I lost my heart to Jake and even now I feel love for this little boy who brought nothing but happiness to those he touched in his short life. I held Jake kissed him repeatedly each one rewarded with the most beautiful of smiles, handing him over for a nap was difficult as I was happy to allow him sleep in my arms. I was there on a job and mum was ready to speak so I laid him in the arms of his nurse and stole one more kiss.

Jakie was premature and deprived of oxygen at birth and at three weeks old he had a brain haemorrhage that left him quadriplegic and using a ventilator.  Mum explained if Jake had stayed in hospital he would have died from infection ‘after all where else do you find every bacteria and virus flying about only in a hospital, most patients can cope but my little man needed to be home where we could control exposure to the infections’ Jake’s room had an air purifier to keep the room as bug free as possible and a play area was set up with lights in his comfort corner.

I was nothing more than an observer in a house of joy all made possible by the Jack & Jill foundation Little Jake died peacefully at home a few weeks later and at Mum’s request the article was never printed although I did send her the photos I took with her permission. Even in her grief Mum was so grateful that her beautiful darling son came home and died with his parents and siblings around him.

When Jonathan Irwin spoke about the disrespectful way Minister Reilly treated him I could feel the tension in my brain rise, temper turned to tears. The big abortion debate is about to kick off with each side spending millions trying to convince people to join their side of the argument! People already know what the think about the abortion debate we are a well-educated country if nothing else so why not save the money give it to Jack & Jill help those babies born with life limiting illness go home to their families for as long as their short lives allow.

Lets not fight about what may or may not be lets care for the children already with us

Dr James Reilly has shown his only interest in our healthcare is to cut back save money and privatize the lot I read the news article some months back about his so called meeting with Jonathan Irwin I was angry this but hearing the story on the Saturday Night Show proved how little this Health Minister cares about his clients. People please stand up do something remember the old saying ‘there but for the grace of god go I’ I was struck down with MS over a weekend and life changed forever. I have been filthy rich and dreadfully unhappy, then I met Steve I was the happiest I have ever been in my entire life I even had in my arms the miracle child; enter MS the destroyer of my beautiful life in any given minute it could be you!

1 Plus 100 Petition For Better Healthcare For All Citizens

So here we are in modern-day Ireland a place where people must wait four years for a hip replacement or a child waits months at a time for follow-up for his eczema; modern Ireland with third world health service on the verge of privatization. The behavior of the HSE is akin to a company being run into the ground in order that it gets sold off on the cheap, so where is the benefit who wins? not the patient that’s for sure.

In the past seven months I have spent five in chronic pain my complaint to the HSE was given the preformatted written response with my details added to complete the appearance that an actual investigation took place. Before this bloody mess began I walked with the aid of a cane but the stress of living on the edge has caused a relapse which has left me disabled. I now have two new bright lesions on my brain stem and for the first time ever I have been put of medication for depression, I keep asking myself how can a health’CARE’ system treat service users so badly that we end up having to compensate for their inability to meet the needs of patients by filling our bodies with medications, while we wait like good little pixies for them to fit us in?

I for one have had enough I am fighting back and demanding my right to life, I don’t expect a perfect life after all I have a progressive disease but right now I am living a tortuous life. Often in films we see prisoners being tortured by having electric wires attached to their bodies, I am a prisoner in my home and every time my brain misfires I receive electric shocks so intense I can hardly breathe.

The Irish Government are not interested in the suffering of their citizens they are however very concerned with their image in Europe.  If I can achieve the 1 plus 100 petition and send the case to the EU petitions committee we can achieve the publicity we need to tell the world what is really happening in this country. I am prepared to front the case and if anyone else out there is unhappy with treatment you too can submit to my petition, if your interested please email me jenniferbanks.media@gmail.com we can help write-up your complaint and prepare it for submission.

We need to stand up for ourselves our voices must be heard, if we continue to live as submissive citizens then we will have only ourselves to blame once the HSE is privatized in 2016; no insurance no treatment.

Another Crap Weekend & Still No Appointment!

Its been another weekend of highs and lows literally I was either sleeping or high but as usual always in pain! I will  begin my petition for submission to the EU health committee tomorrow once my partner in crime Michael comes over.

The one point I want to make is that this is not just about me, it never was and will not be now; thousands are suffering on waiting lists enough is enough. I could tell you hundreds of stories I have been told since I began this project,  if I had the power there are two things I would want changed children and the elderly always take precedence we stand on the shoulders of our elderly and our dreams and hopes are invested in our children

OK enough of my utopic dreams I never thought last summer that I would be throwing dignity to the wind and allowing video blogs go out of me looking anything but pretty but I also never expected that a time would come when I would have to live in such intolerable pain. I feel abandoned by the health service not the doctors, nurses or cleaners these are the amazing people who are functioning in a sinking ship, under extreme stress as not all patients are as understanding as I am. The politicians and the health service are responsible for my suffering their misguided cost cutting measures are more expensive in the long run, last week alone I called the doctor to my home three times each visit costing €100 without a medical card; as I have a card the HSE are paying my bill.

After I publish this blog I will be going onto contact.ie to email all non party MEPs to see who is willing to come onside, to date the only real support I have been given is from Pearse Doherty  and Mary Lou McDonald in fact my last two infusions only happened as a result of their involvement; I am and will be forever grateful.

Today a trip to the Doctor resulted in a morphine patch been added to my overflowing drugs list so I now wear a morphine patch 24/7 take 25mgs of slow release Oxycontin topped off with Oxynorm as required, how I can open my eyes every morning amazes me! If all goes well in the EU I want a guarantee that I will have my infusions every six weeks and nothing less.

If anyone else is experiencing issues with the HSE and the wait for treatment you will be very welcome to add your name to my petition I will be delighted to do what I can to help and the more names the better our chance of success.

 

 

 

 

 

 

 

 

 

Making A Difference

In order for my petition to the european petitions committee to be effective I need those of you willing to put your name on the petition to help me form a group. you don’t have to be disabled or even suffer from chronic pain just the possibility that you too could be effected one by the failure of the HSE to provide timely treatment if you were to need it one day. Those of you interested in joining the group please let me know asap on jenniferbanks.media@gmail.com Michael O’Keeffe is my advocate and will be helping me organise a meeting for those wishing to take part, we will also do our best to have either an independent or Sinn Fein MEP present. Once we have formed a group we can make contact and find a suitable date and place for us all to meet.

We will have to come up with a name etc, you have all been so supportive for so long I hate asking people to help but this is not just about me it is about the voiceless. Ireland is in emotional and physical pain if we can make the slightest difference it will be a job well done.

Below are some bits re the petitions please don’t feel under pressure to say no to being part of this group I understand we all have lives to live we should however be taken to Strasberg for the hearing as our MEPs have a fund to pay for us to attend the hearing.

 

The European Association of Health Law aims to strengthen the health and human rights interface throughout Europe, and to serve as an indispensable source of advice and guidance for the future of health law and policies in Europe.

One of the fundamental rights of European citizens:

Any citizen, acting individually or jointly with others, may at any time exercise his right of petition to the European Parliament under Article 227 of the Treaty on the Functioning of the European Union.

We further recommend that citizens group together to submit a petition to the European Parliament as this will increase the urgency and publicity surrounding a complaint. Unlike the other procedures, the petition must affect you directly. Don’t be fazed by this however. This has been given a wide interpretation and a typical petition could deal from the impact of infrastructure on the environment to a lack of resources being made available for disabled people.

Small Claims application against Dr Reilly

I am making a claim against the Minister for Health Dr Reilly under non fatal offences against the person act, because of the actions and inaction’s of the Minister his subordinates and ancillaries My health mental well-being and security of life and other ancillary rights which are laid down under eu laws and treaties, such as the EU convention on human rights, Irish laws and protocols such as the Patients Charter.
The basis of my case is due to cutbacks in the department of health I lived in a state of intolerable cruelty due to chronic nerve pain. For a period of eight weeks I was unable to leave my bed let alone my home. I made every attempt to communicate my situation to the minister using telephone, email and postal service. As the minister for Health it is his duty to not only serve his office but also the patients who rely on basic treatment in order to function in society, I am one in thousands of others who have been directly effected by the cuts to the health service as a direct result of the actions of Dr Reilly.
The patients charter gives me the right to compensation when my suffering has been caused by the actions of the Department of Health
12-Right to Personalised Treatment
Each individual has the right to diagnostic or therapeutic programmes tailored as much as possible to his or her personal needs.
The health services must guarantee, to this end, flexible programmes, oriented as much as possible to the individual, making sure that the criteria of economic sustainability does not prevail over the right to health care.
14-Right to Compensation
Each individual has the right to receive sufficient compensation within a reasonably short time whenever he or she has suffered physical or moral and psychological harm caused by a health service treatment or lack thereof.

The Nolan Saga Continues

Dear Labour TDs

My husband Stephen Banks attended Derek Nolan’s office on the 5th of October last in desperate need of support, I have multiple sclerosis and suffer with chronic nerve pain at the time Steve attended Mr Nolan’s office he was in desperate need after watching me suffer twenty four hours a day for over seven weeks.

What happened thereafter is explained in my blog http://wp.me/p1N9MH-aL Still Steve held out hope that Mr Nolan would assist us as my situation is ongoing and life long. Steve has not only called Mr Nolan’s office over 58 time but has requested a meeting in writing. The most degrading insult happened today when Steve for the 12th time thus far attended the constituency office here in Galway to try and arrange an appointment. There was another gentleman in front of Steve who was give an appointment with Mr Nolan for Monday at 3.15pm when it was Steves turn at the desk he was informed that they did not know when Mr Nolan would be in the office and he would call Steve to advise of when he would be available; this is the same line spun since last October! The reason Steve went to the office today was to seek some support as my medication has caused depression although once I receive my treatment and stop taking the medication the depression will pass the problem is getting the treatment in the first place ‘full details contained in the blog’ http://wp.me/p1N9MH-ai Origional letter to Dr Reilly.

I am sure the only contact I will receive from any of you will be either automated our we are looking into your case! Still I await in anticipation for your response.
Regards
Jennifer Banks

Labour is in no position to be disrespecting voters at this time we are still waiting for a reply to our email sent to Colm Keaveney sent on 10th December last. We have been ignored and desrespected by the Labour party to the point a an apology is no longer acceptable as it would come without any true meaning.

On Mon, Dec 10, 2012 at 10:38 PM, Jennifer G Banks wrote:
Dear Mr Keaveney

I am writing to you in reference to your roll as chair of the Parliamentary Labour Party and the totally dis-satisfactory service I have received From Derek Nolan, below I have listed the sequence of events

5th October we met in his office to discuss my wife’s urgent need for a lidnocane infusion on the day ward in UCHG without the infusion she was having to live in unbearable nerve pain caused by her MS. Mr Nolan said he would contact the pain clinic and get back to me.

8th October I called Mr Nolans office to tell them my wife would be speaking on newstalk about the cuts in the HSE and how she was effected, I also asked if there was any news.

9th October Mr Nolans office called me to say that Jennifer would not be able to queue jump the waiting list for the pain clinic the secretary could tell I was very annoyed by her statement she quickly backtracked and said I had misunderstood.

12th October Jennifer & I went to the pain clinic to apologies to them and explain we were not trying to jump the queue. The clinic were stunned and stated they had only received a call from Nolans office about the waiting list and they most certainly never mentioned anything that could be understood as queue jumping in fact they wanted us to make as much noise as possible about the lack of resources the clinic had and the impact of the cuts.

15th October I called Mr Nolans office to be told he was busy and would call me back, he never did. During this time my wife was in a very bad way taking meds and having morphine shots her pain was intense and she was becoming very unwell from all the Oxy she was taking.

17th October I called and asked why I had not received a call his secretary said she didn’t know nor did she know when ho would next be available for a meeting. Later that day I received a call that began ‘he was disappointment with me and would find it hard to work with me due to comments my wife was making on twitter all of which were about him not returning calls! I told him how difficult life was for us with Jennifer in constant pain also how our friend have taken his own life that week; he did not react and again said he could not work with me and hung up the phone.

My daughter wrote an open letter on facebook after hearing how Derek had treated me on the phone that day, the letter went viral many times over the next few days and Mr Nolan entered into an online spat with my 15yr old daughter which did him no favors in fact he may be lucky to get elected in the future.

Since October 17th I have been regularly phoning Mr Nolans office trying to arrange a follow up appointment I have gone so far as to put my request in writing, whether he likes it or not he is my representative in the dail; both my wife & I voted for him in 2011 it is his duty to meet with his constituents. I have always been calm and polite I am far from an aggressive man; I am disgusted at the manner in which I have been treated.

I expect you as Chair of the Parliamentary Party to deal with this ridiculous situation, if a few tweets from my wife mean I am no longer to be treated as a citizen; I see little hope as one should not enter politics expecting nothing but glowing reviews.
Yours truthfully
Stephen Banks

Jennifer Banks
Telephone: 091 596 006
Mobile: 087 664 1518

Author of Saving Grace
Poolbeg Press