Health News Ireland hears how yet another potential life-saving drug is not being reimbursed because of financial considerations…   MALIGNANT Melanoma is a particularly nasty and dangerous form of skin cancer. Once it starts to spread, it can overwhelm a body in as little as 6-9 months. Compared with other forms of the disease, malignant melanoma strikes those who are relatively young and, on average, 22 years of life is lost from each victim.   So, the question is: what would you give for a drug that could safeguard you against this deadly scourge? The answer, for those who have the disease, is everything!   Well, the good news is…we have that drug. The bad news is…this being Ireland, you can’t have it!!   The drug in question is called YERVOY (medical name: ipilimumab). It is particularly effective and works by stimulating the body’s own immune system to identify and fight spreading melanoma cancer cells. The drug is so powerful that it has been classified as ‘twice as effective’ as its nearest competitor drug.   It is the first significant treatment advance in this form of cancer for more than 30 years.   YERVOY has been approved for use by the European medical authorities since July of last year. In January of this year, the National Cancer Care Control Programme (NCCP) recommended to the Health Service Executive (HSE) that funding should be made available to provide the drug to Irish patients.     Devastating Consequences But, this has still not happened. In fact, the National Centre for Pharmacoeconomics (NCPE) has refused to recommend the reimbursement of YERVOY on the basis of cost.  Like most things in Ireland today, it comes down to money.   Doctors here are pointing out that the delay is having devastating consequences for Irish patients with advanced melanoma and is causing untold misery for their families.   “We in the oncology community have waited a long time for a new effective therapy option like ipilimumab. The prolonged disease control we have seen in a few of these patients is unprecedented in this cancer and it is therefore very disheartening that patients in Ireland are unable to access this exciting therapy,” said Dr Cathy Kelly of the Mater Hospital’s BreastCheck unit.   Professor John Crown – a well-known cancer specialist and TD – has said that the drug can work really well for some patients.   Deaths from malignant melanoma have increased steadily over the years in Ireland. If it spreads to other areas of the body, you have a major fight on your hands.   Other European countries, including England, Denmark and Holland have made YERVOY available to patients. But not Ireland.   BMS, the company who make the drug, have written to the Minister for Health on the matter. They have also written to the Taoiseach. They await a reply. And while we wait, people are dying.  

Health News Ireland hears about the delay in diagnosing ME/Chronic Fatigue Syndrome and of a series of new seminars coming up to highlight this debilitating condition…   AS many as 12,000 people in Ireland are thought to suffer from M.E. – a condition that is now often diagnosed under the name Chronic Fatigue Syndrome (CFS).   The exact cause of ME/CFS remains a mystery, but research has shown that it can affect the immune system and nervous system of sufferers.   Most people experience a flu-like illness before the onset of ME/CFS. They also succumb to sore throats, impaired concentration and memory, headaches, disturbed sleep, dizziness, muscle and joint pain.   A particular feature of the disease is that the condition waxes and wanes over time and symptoms can fluctuate a great deal from day to day or, indeed, in the same day.   Things have improved in relation to the management of ME in this country…but not by as much as they should have.   “Many people still experience a considerable delay in obtaining a firm diagnosis,” says Vera Kindlon, Chairperson of the Irish ME/CFS Support Group.   “But, an early diagnosis greatly improves the prognosis. Without a diagnosis, relations with family and friends can be strained and arrangements with employers or schools become very difficult,” says Vera, highlighting the practical problems of this condition.   Gaining Support “Having a name for what is wrong with them allows patients to better manage their condition. They can also get in touch with other sufferers, learning how others have dealt with similar problems and gaining support and empathy from those who know exactly what it is like.”   Orla Ni Chomhrai is co-ordinator of the Galway ME Support Group. She goes a step further: “Patients often have problems getting a diagnosis and getting adequate or appropriate support due to misunderstandings and ignorance surrounding the condition”.   With this in mind, the Irish ME/CFS Association has organised a free seminar for teenagers and young adults with ME. It will be held in the Grand Canal Hotel in Dublin 4 on Saturday May 12^th (which is the International ME/CFS Day). It kicks off at 2pm.   The seminar will allow time for those affected to share their experiences and ways of coping and the gathering will also hear of some handy tips and tactics on how to handle everyday life.   Freda, whose daughter Siobhan (19) has ME, shared some of her thought and feelings surrounding the condition, to give people a taste of the reality of this scourge:   “I have learned in the last 3 years to swallow the irritation when someone comments to my 19-year-old daughter ‘you look well’, in that tone that means ‘are you sure you are really sick?’   “Only she and I know the heroic effort that she has gone through just to get out of bed, showered, dressed and out of the house and the price of exhaustion that she will later pay for attempting to undertake two separate activities in one day.   “Having ME in the family is like having a spectre at the feast. It’s always there and invades everything that you do as a family. Imagine that someone in your family has an illness which is severely debilitating but for which there is no proof, no cure, no idea of the timescale and no notion that a recovery, when it comes, will be lasting.   “Yes, there are worse things that you can have. But this is bad. It has robbed her of her health, education and social life and my family of its peace of mind.”    

• Further details of upcoming seminars available by phoning 01-2350965, or info@irishmecfs.org

       

Rory Hafford talks to Nurses Spokesperson Liam Doran about the emotional battle faced by our nurses every day…   WHEN it comes to healthcare in this country it is the nurses, more often than not, who find themselves in the firing line. They work at the coal-face; they are often the first port of call for presenting patients; and they frequently get it in the neck from irate folk who are forced to spend endless hours in an A+E Department.   Consequently, nurses are a fairly accurate barometer when trying to take the pulse of the Irish system of healthcare.   “How do nurses feel at the moment? They feel disempowered. They feel ignored. They feel distraught…”   They are the words of Liam Doran, the General Secretary of the Irish Nurses and Midwives Organisation.   There has always been a strength to Liam Doran. Over the years he has been a weighty media performer; more interested in solutions than finger-pointing. But, you can tell that he has now reached a kind of impasse; a situation that is reflected in the group of doughty workers he represents.   “How bad is the situation at the moment? Well, we are beyond measure. We are in an unprecedented situation where both the financial and manpower levels are being decimated and, to be honest, I can’t really see a bend in the road.”   He says nurses are constantly trying to priorities with less and less resources and there is still more to come.   “We have at the moment around 102,000 employed in healthcare, but the Government wants this figure to be down to 96,000 in a few years. That means more cuts and even great sacrifice. It’s unsustainable.”     Early Interventions He says the ‘abnormal has now become normal’, as health managers are so fixated on tomorrow’s problems that they forget what has to be done today.   “The cuts have run so deep that people are not getting the early interventions that they require. And the problem is not just in A+E Departments; it’s right across the board, in communities.”   To cut a long – and depressingly familiar – story short the nurses have no option but to take things into their own hands; because, quite simply, they can’t wait around for decisions to be made for them.   “Nurses find themselves consistently trying to priorities, with less and less resources. We have a Safe Practice Campaign for nurses, which is on-going. Basically speaking, we are trying to find ways to empower nurses with the tools to identify risks and protect patients,” says Liam Doran. “That’s the brutal truth.” He says, in the past two to three months, he has noticed an increasing preparedness among health managers to acknowledge that the floor has been reached.   The question is: what are they prepared to do about it.  

Rory Hafford talks to Dr Raymond Victory about the thorny subject of chronic pain, the kind of people it affects and what we can do about it…   THOUSANDS of Irish people live with the problem of chronic pain every day. The exact figure is 13% of the population. That’s a lot of pain. And a lot of uncertainty.   Arthur C Klein wrote the book (literally) on Chronic Pain. He says the five worst things about chronic pain are:  

• The pain itself
• The uncertainty about whether and when you will get well
• The lack of a specific diagnosis
• The differing advice and opinions
• The difficulty sorting our facts from fallacies

“Anecdotal tales of ‘magic bullet’ cures come at you from every direction,” says Klein, who has conducted on-going studies on the subject. “Ask a thousand strangers about chronic pain and you’ll get a thousand different answers – and you’ll need to live a thousand years to pursue all of them.”   Dr Raymond Victory is a pain management specialist. More particularly, if you ask him how he would describe himself, he says he is an Interventional Pain Physician. In short, he’s the guy you go to when you can’t get no relief!!   Working from the Beacon Hospital in Dublin, Dr Victory got into the area the same way a lot of specialists do: via anaesthesia.   “Yeah, I started out in Anaesthesia and then branched off into pain medicine,” Dr Victory told Health News Ireland.   “We try to adopt a multi-disciplinary approach, where specialists like psychologists and physical therapists are all part of the team that sees the patient.”   Coping Mechanisms It would appear to be working. He says there is ‘significant evidence’ that people who attend pain management programmes improve their function and coping mechanisms when it comes to long-term pain.   So, what exactly is chronic pain? Dr Victory says it is pain that persists longer than three months and it mostly comes as a result of degenerative changes in the spine, joint disease, or following surgery.   “Take the example of breast surgery, for instance. One in five women will complain of nerve changes and changes in sensitivity as a result of breast surgery.”   He says there is nothing wrong with the surgery. Everything is done competently and according to the book. It’s just that nerves don’t particularly like being cut and can react in differing ways.   “Our particular specialty is nerve-block procedures around the spine. There are many ways you can approach this problem: you can burn a nerve to numb a joint; you can implant a device to help with pain, like a spinal cord stimulator, or you can implant a morphine pump.”   He says that it is generally older people who will find their way to him because it is the more degenerative diseases that result in nerve pain. However, that’s not always the case.   “We can see people right across the spectrum, from 18 to 80,” says Dr Victory, who is also the current President of the Irish Pain Society.   Chronic pain, it would appear, knows no boundaries.  

• If you feel you could benefit from a trip to see a pain specialist, give Dr Victory’s office a call on: 01-4065056. Or you can e-mail him on victory@slh.ie

   

Customers encouraged to report ‘inappropriate’ billing practices from healthcare providers, after almost €7million is recouped. Thomas Wilson reports…   THE VHI is asking customers to check their bills thoroughly after it was found that almost €7million worth of incorrect invoicing from healthcare providers was filed.   The VHI’s Special Claims Investigation Unit (SIU) has just announced that ‘inappropriate claims’ amounted to millions were uncovered during 2011.   “The savings were recouped as a result of a planned programme of billing audits by the SIU team, as well as an on-going initiative which queried the appropriateness of claims for patients with prolonged hospital admissions,” said Declan Moran, Chief Executive of the healthcare insurance provider.   He said that approximately 2,000 of their customers had contacted the VHI to alert them to the fact that the bills they received were a bit inaccurate or, in some cases, just downright wrong!   “We received contact from vigilant customers who queried their claims assessment statements and, where money is due, it is recouped in full. In 44 per cent of the cases reported, the full 100 per cent of the money paid out was due for recovery.”   Consistent Pattern   Health News Ireland contacted the VHI and learned that, in some cases, there is a recurring pattern of incorrect or inappropriate invoicing – and sometimes from the same healthcare providers.   “We have found a consistent pattern of inappropriate invoicing from some groups,” a VHI spokesperson said. “It can be something simple, like billing us for a private room for the patient where, in actual fact, the patient was treated in a semi-private room.   “It is things like this that we are asking our customers to be on the look-out for.”   If it is found that a provider is consistently wrong in their invoicing, an audit is conducted to identify the extent of the practice, the level of monies to be repaid and the redesign of processes to prevent any reoccurrence in inappropriate billing.   The most common anomalies identified last year were:

• Incorrect accommodation fees
• Inappropriate lengths of stay
• Charges being raised for cancelled procedures
• Private fees for patients treated in a public capacity
• Inappropriate invoicing for certain specified drugs and tests

  Significant additional resources have been invested in the SIU team over the past two years and this has resulted in a doubling of the monies recovered, year on year.     “The work conducted by the SIU has allowed the VHI to recover a significant amount of money as well as enabling us to work more closely with hospitals and healthcare providers to streamline their invoicing systems and ensure that bills are a true reflection of the services received by our customers,” said Declan Moran.  

• If customers think that there is a mistake on their bill statement, or if the VHI has been charged for accommodation or treatments not received, the number to call is 1850-44-44-44, or email siu@vhi.ie