New hope for chronic pain sufferers
By Niall Hunter-Editor
Many people who have been suffering from chronic pain in the back or in other areas may think they are permanently disabled and will never be able to have an active life.
Many give up work and withdraw from most forms of activity because of their pain, their perception of what they can and cannot do as a result of the pain, and due to the fact that they have not had much success with the treatments they have tried.
Many also engage in often fruitless litigation, which usually only serves to worsen the anxiety and depression they may feel about their condition.
However, a new hospital-based scheme offers hope to these patients by helping them to resume a more active and fulfilling work and social life, through both psychological and physical therapy.
The scheme has resulted in many patients who were previously thought to be 'hopeless cases' seeing remarkable improvements in their condition, and many of them returning to work or training.
The Ulysses Programme at Tallaght Hospital in Dublin has had impressive results with patients with chronic disability, mostly resulting from back pain.
Recent data from the Ulysses programme showed that 53% of participants who expressed a wish to return to work or training did so post-completion of the programme.
The patients who have been treated under the programme have also shown major improvements in psychological and physical functioning. Around 180 patients have to date taken part in the programme.
The State pays out over 1 million euro per week in disability payments relating to back pain alone. So any programme that helps get people back to work not only aids the patient but saves on state disability payments.
Dr Camillus Power, consultant anaesthetist and Director of the Ulysses Programme, says chronic pain affects around 13% of the population. He points out that many of the treatments offered for chronic pain often do not work.
The Ulysses programme began in 2001 and since then 180 patients have participated it. The key to its successful operation, according to Dr Power, is the use of a multidisciplinary team to assist the patient, from the anaesthetist/pain specialist to the physiotherapist, occupational therapist, psychologist and psychiatrist, all providing an integrated care plan.
Says Dr Power:"We try to help those patients who have a chronic pain problem for which there is no 'cure'. Previously, these people would simply have been told to live with their problem."
But, says Dr Power, this is the last thing these patients want to be told. "Ordinarily, patients with chronic pain would not have the skills to live with this. We aim to teach patients how to manage their pain on an ongoing basis and in that way reduce their suffering. We are not actually 'curing' their pain but we hope our input will reduce their suffering. It is often only when all other treatment methods have failed that they will look at the type of rehabilitation programme we have on offer."
The Ulysses programme lasts four weeks. "One of the components", says Dr Power "is physiotherapy. The idea is to get the patient to be more active again. One of the major problems these patients have is a fear of moving. You have to teach them that it is all right to move and set them new goals; the aim is to get them out of the 'inactivity syndrome'".
There is also a major emphasis on cognitive behavioural therapy in the Ulysses programme. The programme addresses how the patient thinks and feels and aims to reduce depression and anxiety associated with the condition and work on the patient's fear of undertaking activity. Sessions are run on a group basis.
Between 10 and 80 per cent of the chronic pain population has depression at any one time. The Ulysses programme uses goals in terms of teaching people skills to cope with the pain more effectively. It uses relaxation techniques to relieve stress and anxiety levels.
Exercise, including gym and hydrotherapy work, is an important part of the programmne.
Dr Power says the programme tries to ignore patients' traditional 'pain behaviour' in order to encourage positive rather than negative pain coping strategies. By week four of the programme most of the patients' 'pain behaviour', which would include the patient avoiding movement or activity because of anticipation of pain, has gone.
Dr Power says the Association for the Study of Pain has proposed that chronic pain be recognised as a disease in its own right. "If a patient says he had chronic pain people may not know what he is really talking about and there is no recognition that people suffer from this. A good deal of the 'pain behaviour' we encounter has come about because patients have difficulty convincing people that they have a problem. This could be addressed if chronic pain was officially recognised as a disease."
The Ulysses programme deals mainly with back pain, but other chronic pain conditions are catered for as well. Dr Power says many of the patients presenting to the Ulysses programme would have been taking a lot of medication for their condition and patients are encouraged either to come off their medication or to reduce it.
They are also encouraged where possible to cease any litigation they might be involved in as a result of their condition.
He adds:"many patients too will have tried a variety of therapies including complementary medicine. They spend a lot of time and money pursuing treatments and cures. We aim to draw a line under that process. Our basic message is that there is no real cure but we can do something positive for you."
|Anonymous Posted: 02/02/2005 02:36|
|This is good. I have suffered chonic pain for a good few years and a lot of the above makes perfect sense. I have lately got up the courage to start retraining again. It is an effort everyday not to give into the pain. I spend most of my time going to medical app or else resting but I have only given in to the pain on two days of the course gj|
|Anonymous Posted: 02/02/2005 17:28|
|it should be noted the gym work will only serve to worsen the pain involved in Fibromyalgia and may prompt a total relapse|
|Anonymous Posted: 02/02/2005 18:25|
|I would like to concur with the view that gym work and exercise will not help the pain associated with Chronic Fatigue syndrome or Fibromyalgia and may in fact worsen the conditions considerably.|
|Anonymous Posted: 02/02/2005 19:52|
|Dr Power said:"many patients too will have tried a variety of therapies including complementary medicine. They spend a lot of time and money pursuing treatments and cures. We aim to draw a line under that process. Our basic message is that there is no real cure but we can do something positive for you." _________________________________ It is so ridiculous to hear this in this day and age: chronic pain can be caused by lots of things, some of which may be able to be treated directly. For example, Parvovirus B19 can lead to a long-term Chronic Fatigue Syndrome. Some research supported by the CFS Research Foundation in the UK found that Intraveneous Immunoglobulin led to a complete resolution of symptoms. I have seen many patients with ME/Chronic Fatigue Syndrome been made much worse by exercise programmes; one-size-fits-all approaches are not appropriate. More basic research needs to be done to understand what is causing people's chronic pain and more subgrouping to see who might benefit from exercise and how might actually be made worse by it.|
|Anonymous Posted: 02/02/2005 20:50|
|This programme is not a \"cure\", it\'s aim would appear to help people \"live with the pain\". The article states that people who are told to \"live with it\" wouldn\'t have the necessary coping skills. This smacks of the psychologising of the real,actual pain some of us have learnt ) to live with on a day to day basis. I agree with the previous writer that exercise can cause relapse, but that doesn\'t mean we lie around all day. Personally I do what I can, when I can. I think that\'s a more sensible approach.|
|Anonymous Posted: 02/02/2005 21:42|
|I have tried this type of "treatment" in England, it is know as "pain management" over there. My previous treatments for my spinal injury included surgery, twice, physiotherapy, hydrotherapy a "Tens machine, accupuncture and 3 courses of spinal nerve block injections. I found this treatment to worsen my pain as it is a well known fact that the body will "protect" its damaged area and sieze muscles if the surrounding area is threatened. I gave up after 2 weeks of the course as I had lived with the pain for 10 years and had unconciously adapted my lifestyle to match my abilities.I also found others in my group to be slaves to their pain and it depressed me to hear them constantly be-moaning their lot. I found that a good "kick up the backside" was all I needed to stop feeling sorry for myself and to "get out there and have a life" after all there are people a lot worse off.|
|Anonymous Posted: 02/02/2005 21:47|
|I asked a doctor could he give me advice on pain killers for my recurring acute pain caused by Endometriosis. Because for me that is what it is. Each time you Menstruate when you have Endo you have a fresh acute injury. He had no answer to that. I have also been dignosed with a hernitated disk, ME/CFS/FMS.For me there is no pain like Endo & will be damned if anyone tells me to go cold turkey with out my pain meds. I never take pain meds for FMS for me it is mostly stiffness & not the \"terrible\" pain that some sufferers describe. When I suffered from the herniated disk I also found the need for Anti-inflamatories for the first couple of months. The problem with the medics is that they do not ask for or listen to their patients desription of their condition & they therfore form assumptions about patients experience of pain & ilness that may not bear any resemblance to the patients reality.|
|Anonymous Posted: 02/02/2005 22:29|
|Gym work will NOT serve to worsen the pain associated with Fibromyalgia. I've had FM for a number of years and the only thing that relieves the symptoms is regular aerobic exercise. Gym work, carried out properly, allows you exercise aerobically all year round in warm, comfortable conditions. All available recent research recommends a regular aerobic exercise programme in the treatment and management of FM. Perhaps the earlier correspondent "Overdid it" as could any healthy person. I would recommend they try it again, perhaps under supervision. Swimming is also an excellent form of non-impact aerobic exercise that can be carried out all year round, if there is a pool convenient to you. Most leisure centres also have steams rooms and jacuzzis which are great for heating and relaxing sore joints and muscles etc.|
|Anonymous Posted: 03/02/2005 10:06|
|Anon- one size does not fit all. Gym work will worsen FM pain in soem sufferers - even with a graduated program under supervision|
|Anonymous Posted: 03/02/2005 11:42|
|I have had a lot of muscle pain for the length of my illness (ME/CFS). In the early years of my illness, muscle pain was probably my most prominent symptom. I didn't get a diagnosis then but I would say if I went to some consultants now, I would get a diagnosis of Fibromyalgia as the physios found all sorts of tender spots all over my body. Exercise made me a lot worse. I think if people satisfy the criteria for ME/CFS whether they also satisfy the criteria for Fibromyalgia or not (many seem to), there is a real chance than an aerobic exercise programme can make them worse. This is why subgrouping is so important and not having a one-size-fits-all approach.|
|Anonymous Posted: 03/02/2005 21:43|
|One can only "cure" or help those who want (at a conscious or sub-conscious level) to be.|
|Anonymous Posted: 04/02/2005 01:05|
|you can't sit around and do nothing you might as well stay in bed keep trying you get somrwere in the end|
|Anonymous Posted: 04/02/2005 10:09|
|It's crazy to think that those with FM, cfs or even chronic back pain, somehow don';t want to get better. Thefast majority are NOT malingerers and would give anythign to get better. What they do not want is an unsuitable recovery program prompting a major relapse and addign months and maybe years onto their illness|
|Anonymous Posted: 04/02/2005 13:13|
|I think that anyone who suffers from a chronic pain condition, be it, ME/CFS, back pain, lyme disease, or other conditions, will want desperately to get better. I've never met anyone that wants to be in such severe pain they cant sleep, can barely walk, cant eat etc. Its a case of appropriate treatment for the individuals condition. A one treatment fits all is not an adequate approach. And you cannot think yourself better if you have something like a herniated disk, or a bacterial infection such as lyme disease.|
|Anonymous Posted: 04/02/2005 13:53|
|Lyme's disease is rapidly treated with a course of strong anti-biotics|
|Anonymous Posted: 04/02/2005 16:55|
|I would concur with the messages stating that for someone with ME/CFS an exercise regime, that pushes beyond the persons ability, is detrimental to their health. For me it is not an imagined fear of the pain and other symptoms being worsened by such a regime, it is 14 years of experience.The idea of having pain recognised as a disease and treating it through an exercise regime is ludicrous, as another post says there are many reasons for pain and surely it should be established what the cause of the pain is and then whether or not exercise is suitable. There are many patients for whom exercise would be of benefit, but many more for whom it would be harmful and for patients not to be sub grouped would be nothing short of neglect.|
|Anonymous Posted: 05/02/2005 23:03|
|I am really angry at the glib assertions in the article, as I have a friend who has suffered chronic head-pain for 15 years. One assertion that physiotherapy will help in all cases. In this case, even the most gentle physio has dire consequences and worsens the pain considerably. The advice to come off or reduce medication is surely highly irresponsible and insensitive, as if these sufferers were taking unnecessary medication! Obviously the people who dish out this advice have never experienced wakening at night with unspeakable pain, as the medication wears off. Chronic pain sufferers can set their clocks by it!|
|Anonymous Posted: 16/02/2005 00:45|
|Our son has had chronic back pain for 14 years following a herniated disc and 2 operations. We recently bought him an electronic pain relief device. This was not a TENS machine, but is new technology called ENM from Remedi. It has not removed his pain completely, but has given him control of his life again, and dramatically raised his spirits. They even offer a money back guarantee, which is why we felt safe in trying it.|
|Anonymous Posted: 17/02/2005 16:02|
|Hi, Dr Declan O\'Keefe at ELm PArk has been running a multidisciplinary program of Physiotherapy and psychotherapy for many years now. As user of his clinic I have come from being completely disabled with pain to being able to tak on a full time job again. This should be done in every major centre are Tallaght a few years behind everyone else due to lack of funding !!!|
|ellen(WCN26420) Posted: 27/03/2005 17:11|
|pain management physio and exercise made my back much worse epidurals is my only relief which iworry of side effects|
|Tom(tomkindlon) Posted: 29/03/2005 22:57|
|This study shows that exercise did anything but decrease the pain in people with CFS. So I don't think a "one size fits all" approach is appropriate for people with chronic pain ----------------------------- Increased daily physical activity and fatigue symptoms in chronic fatigue syndrome. Journal: Dyn Med. 2005 Mar 3;4(1):3 Authors: Black CD, O'Cnnor PJ, McCully KK. Affiliation: The Department of Exercise Science, The University of Georgia, Athens, GA, USA NLM Citation: PMID: 15745455 RESULTS: CFS patients had significantly lower daily activity counts than controls (162.5 +/- 51.7 x 103 counts/day vs. 267.2 +/- 79.5 x 103 counts/day) during a 2-week baseline period. At baseline, the CFS patients reported significantly (P < 0.01) higher fatigue and muscle pain intensity compared to controls but the groups did not differ in overall mood. CFS subjects increased their daily activity by 28 +/- 19.7% over a 4 week period. Overall mood and muscle pain worsened in the CFS patients with increased activity. ---------------- CONCLUSIONS: CFS patients were able to increase their daily physical activity for a period of four weeks. In contrast to previous studies fatigue, muscle pain, and overall mood did not improve with increased activity. Increased activity was not presented as a treatment which may account for the differential findings between this and previous studies. The results suggest that a daily "activity limit" may exist in this population. Future studies on the impact of physical activity on the symptoms of CFS patients are needed. ------------ [Note: This is an open access article. The full text is available for free in PDF format at http://www.dynamic-med.com/content/pdf/1476-5918-4-3.pdf .] ------------------|
|mary(QJS26723) Posted: 03/04/2005 23:04|
|I am a sufferer of fibromyalgia and i would like more infomation on the pain program|
|Jennifer(NZS15157) Posted: 18/06/2005 11:42|
|I am currently part of the pain programme at Tallaght Hospital. I was diganosed with spina bifida at six months and growing up have always being able to cope with whatever back pain I had because of this. However, in 2002 out of nowhere I got a pain which travelled from the base of my back all the way down my right leg. I had never experienced pain like it before and was unable to walk any distance. I was refered to the surgical side of Tallaght hospital to see various consultants and they could not figure out what was causing the pain but said that a nerve was probably being pressed somewhere. They would not do any surgical procedures because of the spina bifida. They refered me to the pain clinic. I only wish I had been refered there in the first instance. The programme is a "wonder". I am so delighted that I was accepted for this course. It's best thing that has happened. The course allows you to talk about your fustrations, the anger you feel with pain with progessionals as well as other course members. You also hear about the experiences of others which is great too. The combination of gym work (which you do at your own pace), Hydrotherapy, relaxation, stretching, occupational theraphy and physcology have really helped me. I am now walking 20 minutes a day which some might scoff at but 3 weeks ago I wasn't walking at all. I recommend this course it has shown me the "light" and has equipped me with the tools to make things better. I know that the pain will never go away and there will be "bad days" and "flares-up" but the difference is that I now know how to handle them without being dragged down to the doldrums. The only thing I would say is that there is not enough of these courses available. Most of the people I have met on the course come from outside Dublin and have a lot of travelling to do which adds to their pain levels. There needs to be more of these courses available around the country.|
|Anonymous Posted: 07/07/2005 21:21|
|i had lumbar epidural 5mths ago did not take away fully but helped alot made my life bearable|
|Anonymous Posted: 07/11/2005 13:34|
|I have had two laminectomoys, three epidurals and five sets of facet joint injections - none of which have worked for my lower back pain. Most doctors tell you to live with it and some do not. Every person is different and respond differently to a wide variety of approaches out there. Personally I found acupuncture was the only thing to get me to sleep. I take large amounts of morphine every day and I know there is never a real cure out there. I am going to undergo a multi level fusion in the hope that the pain will be reduced to a more tolerable level. I don't mind being in some pain as long as I can get out and about. Frankly if the operation doesn't work then I would try the above programme. If it doesn't work for me then so be it - at least I'll have given it a go. Plus a little bit of education never did anyone any harm and nobody can force you to do anything that hurts you too much. If you let them push you then more fool you. Try something to get going and if it hurts like hell and you genuinly cannot take it then tell that person to lay off or pay the consequences (I am armed with a crutch!). Good luck everyone|
|5.25 Posted: 17/11/2005 03:46|
|I am in dismay at some of the comments I have read hear. I worked in a Profesion I longed for all my life and still hope and wish I could return to it.As for "needing a good kick up the backside" as stated previously here, I respect this persons opinion but do not agree.Has this Person experienced "chronic pain"?I was in my prime,Had great prospects in My Profession and an injury has completely changed my life forever. I have been on light painkillers to Morphine and Methadone had surgery++ and have tried many Alternative medicines to no avail... I would dearly return to work if it were possible but I believe that it is only someone who experiences chronic pain can really understand this.My best wishes to you all,Yours in Hope|
|Ros Posted: 19/05/2006 18:07|
|My pain consultant has suggested an operation to insert a type of pacemaker to relieve my chronic back pain for which I have had numerous not very successful epidurals as well as rhysotomies. Has anyone had this operation and if so does this 'machine' help? I think it's like an internal tens machine.|
|little Posted: 24/05/2006 00:08|
|Hi Ros , I presume you are talking about the spinal cord stimulator I had it put in last year , www.medtronic.com or UK have a good site about with videos. It has gone quite well on the whole takes a bit of time to get use to having the box inside you .But Definitely better less medications and quality of life.|
|Tilly Posted: 28/08/2006 13:28|
|My problem with chronic pain is fear of the "pain pills". You get the pills from the chemist and read in side effects which scare you off with comments like "can cause heart attach or stroke" etc. Also, I take other meds for high BP and they never talk about interactions etc. Bad news.|
|Anonymous Posted: 29/08/2006 22:00|
|To the endometryosis sufferer. I agree the pain of endo is worse than that of arthritis, damaged disc or nerves. I know I've experienced all of the above. A laparoscopy with lazer removed all the endometrial cysts, thus ending the pain. I also had a GP who believed I should just "offer it up" until meenopause. Bullshit. No man would accept the idea of passing a kidney stone every month. Any competant gynacologist can remove endometriosys and leave you still capable of childbearing.|
|Mary Posted: 30/08/2006 09:20|
|Any GP who tells you that about ANY medical problem should simply not be practising medecine and any gynae who came out with nonsense like that to me, would find him or herself with a complaint made against them.|
|Cat Posted: 07/09/2006 22:29|
|Hi little I have had the Spinal Cord Stimulator put in three different times and taken out again. I think it works but it depends on where you have the pain. My pain is in my right leg from my knee down to my foot. It has never worked for me. So at the moment I am on a mountain of pills|
|Patricia Posted: 12/09/2006 23:31|
|Have been told that paraspinal muscles are the problem and have been prescribed an opiate and benzodiazepine for neuropathic pain. Not satisfactory. Any suggestions, doctors seem to have given up on helping generally and only suggest pain relief.|
|carole(XOM66693) Posted: 23/11/2007 11:39|
|Hi,i am a female of 49.8weeks ago i woke up stiff neck,sore shoulder and arm, i tried to fight it and continue my normal life.After two weeks i went to my gp,he thought i had pulled adisc .so i went for x-ray,witch showed arthritis in c4-c7.since then the nerves down from my neck,shoulder ,arm and hand are so painfull. Iam not able to drive,walk for long periods,swim or go to gym.Everything is so restricted. HELP|
|Annie Posted: 21/12/2007 16:05|
|I have been attending Dr Power in Tallaght and have found his approach to chronic pain absolutely fantastic. He does take a holistic view of his patients - he works with you, not at you. I've had a reduction in my pain, but also a much better attitude to how to live with it.|
|Barbara(QCM67746) Posted: 11/01/2008 14:26|
|Hi Ros, I have suffered all my life with chronic back pain which also included pain down both of my legs. The cause of this is a congenital degenerative disease. I have had two spinal fusions and from tham I got about ten good years. Now the fusions have cracked and are now useless. My brilliant GP referred me to a 'pain clinic' in St Vincent Hosp. Dublin. The main man is Dr Declan O'Keeffe, and what a man. I had to go through a 'pain management programme' which involved travelling to the hosp. every day for three weeks. There you learn about your pain and meet others suffering from chronic pain. What a revelation, I learned so much, and also realised how uninterested some health professionals are when it comes to chronic pain. Since then I have had two sets of SENS inserted in my back. Before having them in I had to go through various tests to ensure that I was a suitable candidate. What a relief, the SENS have reduced my pain level by approximately 90%. It is now over a year since they were inserted and if anyone told me that I had to have them removed I would run away. They are absolutely fantastic (if they are for you), and I would have absolutely no hesitation in recommending that you go for it. Dr O'Keeffe and his entire team are fantastic and know exactly what we as chronic pain sufferers are going through. I was born with my condition, and as far as conventional doctors were concerned, all they could do for me was give me more medication. The side effects from all the various cocktails of medications were to say the least dreadful, at one stage I was bleeding into the bowel. All that is behind me now, the only medication I take now is at night, just to help me drop off to sleep.|
|Annie Posted: 11/01/2008 19:37|
|I'd agree with Barbara, the pain management teams really work to help you understand living with constant pain. I'm still getting rhizotomies (burning the nerves so that they don't transmit the pain message), but I've been assessed as suitable for a SENS implant and I'll consider it as a treatment if the rhizotomies don't give me some relief. It's great to hear how much they have helped Barbara.|
|Barbara(QCM67746) Posted: 14/01/2008 15:54|
|Glad to be of some assistance Annie, the SENS really have given me a new lease of life, I even went on holiday to Mexico last year with another fellow chronic pain sufferer. This was an accomplishment as it is a long haul flight. While there we went swimming with dolphins. Now I find gentle swimming is really great as you are weightless and it is great exercise for all over. Before the SENS I would only have been able to watch from the sidelines.|
|ro Posted: 28/06/2008 17:43|
|My husband has suffered back pain over 10 years. It is cronic now. He has opted to have surgery.|
|sammi Posted: 27/02/2009 21:13|
I think the first term is LOGICAL THINKING. every person is an individual and should be treated as such and every presntation should be treated as an individual case. the medical field is an area filled with 'book learnt' people who seem unable to think past the 'text book' scenario.
Are they unable to think outside the box or unwilling. There are myriad cases out there of people who have various compaints,bemoans about the system from the top down to the bottom. How does one advocate change, by campaigning.
Having worked all my life with animals I can tell you that the differrences in how they are treated by the veterinary science versus human health care is unreal.
My husband is suffering with severe 24 / back pain for years, finally after keeping after the problem I got him scaned and a disc bulge was diagnosed. From there we thought it would get easier to get treatment as there was a diagnosis, it's not just 'backache'.
Boy was I wrong, what an ordeal it has been. after a year of getting nerve block injections, which can be said were a waste of time in our case, We were under the impression he would be operated on, so bad was he, but no. The consulatant surgeon said, on his last admission to hospital, I quote " I'm washing my hands of this man, I'm not going to operate, there is no more I can do,send him home" and that was that, get out the door, goodbye. If it was done to a dog there would be a cruelty charge.
We found out about a Neuro surgeon, got a new scan, the bulge has worsened, the operation is pending. We will see if it help's. At this stage he cannot be any worse off.
Many hours spent googling and on the phone I've found out a lot of thing's.
The European Charter of Patient's Right's (2002) is not worth the paper it is written on. Point 11, Right to Avoid Unecessary pain and Suffering.
Legally a hospital can refuse a patient admission to a hospital for treatment.
You can complain until your blue in the face and you may as well be talking to a brick wall.
|Anonymous Posted: 02/03/2009 11:45|
Sammi, while I agree that the treatment your husband got was a disgrace, it is actually not the case to say that legally a hospital can refuse a patient admission for treatment. If a patient presents then a doctor / NCHD must, MUST attend.
|Anonymous Posted: 03/03/2009 11:45|
Juat had it verified, thanks Sammi. Where a hospital cannot admit a patient - for example where they have an outbreak of the vomiting bug or do not have the facilities to treat, they MUST, by law, MUST, refer to a facility where the patient can be treated - for example a hospital with the correct specialist or which doesn't have, for example the vomiting bug.
|sammi Posted: 03/03/2009 14:03|
you are missing the point entirely.
my husband did not have a stomach bug. he had chronic ongoing pain from a herniated disc.
he was REFUSED admission and treatment for it. so while our fat cat consultants and executives and managers languish, he lies at home in absolute agony. with no redress. they are a law unto themselves and have to much power.
patients have NO RIGHTS LEGALLY
has any one else similar grievances. text me on 083 0043 367.
as i am not bothered about remaining anonymous.
i will put all your letters with mine, i will campaign for patients.
|Anonymous Posted: 03/03/2009 15:36|
I think Sammi,m I think you're missing mine to be fair. I wasn't talking about a patient presenting with a stomach bug. I was talking about a patient presenting with anything but admission not being possible becuase there was an outbreak of, for example the vomiting bug or a specialty gap at the hospitaL In cases such as that a patient DOES have the right of referral to where he can be treated, in your husband's case for herniated DISC. i am presuming of course that there is treatment in existence for herniated discs. That being the case, ifyour husband was not admitted or referred to where he could be teated, then yws, his rights WERE in fact denied him. And you have every right to campaign and seek redress and corrrect treatment.
|sammi Posted: 04/03/2009 13:21|
The treatment advised to us was a course of nerve block injections, if they didn't improve the situation, then surgery would be condisdered as the only option.
These failed to give my husband any relief and the attcks became more freqeunt.
On his last admission the consultant, said quote "I'm washing my hands of this man, there is no more I can do, I am not going to operate", and the hospital were goin to immediately discharge him. Goodbye, get out basically.
The following day I went to collect him and he was outside the hospital with cruthces and the pain was so bad he was barely able to stand up, never mind walk. He received no assistance, not even a wheelchair to take him out.
Now we cannot get him back into hospital for pain releif when he has an acute attack as the consulatant washed his hands of him, so now he has no consultant and you can't be admitted without a consulatant.
I have phoned a lot of people in the last week and I've spent hours googling for info.
There are NO RIGHTS there is no one in HSE management that cares or will do anything.
the European Charter for Patient rights, means NOTHING.
Yet there is a cruelty act in place for animals and you can be dealt with under the leagal system.
There is no redress. there is no legal system, no one is going to be held accountable. These lads at the top in HSE are a law unto themselves, they have a lot of power, they make a lot of money and they don't care about patients.
3 months it will take before I will even get a reply about my complaint.
if you do some basic research, you will see what I've said is true. There IS NO LEGAL REDRESS here.
|Anonymous Posted: 04/03/2009 15:40|
So as advised, he had the injections but they didn't improve things, so he was advised that surgery would be condisered as the only option.
It seesm that when faced with the option of an operation the consultant then changed his mind but refused your husband a referral or a second opinion. In this instance your husband is entitled, yes ENTITLED to a medcal explantion as to why the previously advised course of action - ie, surgery will now not be performed. He is also entitled to referral to someone else who can treat him - with an alternative to surgery if neccessary
If he presents at another hospital and treatment or admission is refused to him, he is ENTITLED to referral to where he can be seen or treated.
To wait three months for a reply is simply inhuman - as you say there are laws against treating animals cruelly.
|Anonymous Posted: 06/03/2009 14:00|
Sammi, it seems you have reached a dead end - no way should this be the case. I really hope your TD does something for you. It is a disgrace you have to go to a politician becuase a regional manager simply couldn't be bothered.
I really wish I could help but all I can say is its an outrage. If your husband turned up at another hospital and simply refused to go away without treatment, I wonder what would they do.
Also, you shouldn't have to do this, I know but have you considered highlighting this in the National media. A certain daytime radio programme on RTE might be very interested.
|sammi Posted: 06/03/2009 17:42|
now you can understand my frustration and righteous anger. i fully intend going public with this, as you say it is outrageous.
if you turned up at a hospital and refused to leave they would just leave you there on the trolley.
i've found out you cannot be admitted to a ward without a consultant, and because of what ours done, he doesn't have one.
that's pretty much it. there is no one over his care. out to sea.
i will campaign this and go public and i hope to get it to the dail. for now all my spare time is spent finding the right path to get there.
not just for us but for all the others out there that may have experienced similar or those that may come after.
one thing is for sure, there's needs to a clear out of the present system, government and hse. they have too much power.
they need to remember exactly where the money comes from that pays their wages.
|sammi Posted: 07/03/2009 07:57|
just seen newspaper.
HOSPITALS HAVE TO DOUBLE CUTS TO € 37 m AFTER BUDGET SLASH.
PATIENTS WILL BE SENT HOME TO DIE.
staffing levels will also be cut to reduce costs.
so the real workers on the frontline will lose their jobs. i bet none of the managers, executives or office admin workers will lose their jobs or get their hours cut.
|Anonymous Posted: 09/03/2009 14:10|
So he would be left on a trolley indefinitely? I don't think a consultant can refuse to see a patient - this IS medical misconduct but of course he could discharge him home but if your husband was physically incapable of moving (as I'm sure can happen with such a chronic condition) - what then? Not only do govt seem to have too much power but that consultant seems to have forgotten who he works for and also seems to be answerable to nobody.
|sammi Posted: 09/03/2009 18:07|
Well I've got to be honest it's all a mystery and ya know until you start scrathcing away at the surface you don't find out what exactly is going on.
Now I have NO understanding of the system or the heirarchy in a hospital.
It seems to go like this.
GP refers patient to hospital for admission. A&E do the groundwork and figure out what's wrong. then a consultant admits patient to ward in hospital and is then in charge of his care.
Correct me if I'm wrong if anyone knows - because I could have it wrong.
But in our case the consultant who my husband was under, for years, said go home I'm not operating on you - fact. I can do no more for you - fact. And he wasn't handed over to the care of anyone when he was IN the hospital - fact. He was discharged - fact.
Then a few months down the line when the disc flared up again and the pain was so bad, he was referd back to the hospital by GP as he couldn't keep giving him morphine injections every day.
But this time he was effectively blocked in A&E, they would'nt admit him onto a ward for pain relief. the woman that come to see him said " why don't you go to Dublin". Now possibly he was blocked due to the original consultant 'washing his hands', and then he didn't have one. Or it could be because he's getting the surgery done privately in Dublin. Maybe there should of been another consultant either from orth, or another surgeon or even a pain specialist that should of been called, I don't know. but something smells funny.
But I can assure ye all it was a case of, good bye, get out.
I've been to a TD. I've made other enquiries and he's been a patient in another hospital for the last week. thank God as it's worse he got with the pain. The staff are wonderful and very friendly and nice, as are the doctors. they have an ambulance booked on weds to take him to dublin for his operation.
It will take 3 months to even get a reply from the hospital management.
Medical Misconduct it may be, but you still haven't a leg to stand on.
|Anonymous Posted: 10/03/2009 15:46|
Hi Sammi, delighted to hear that your husband is now finally actually getting treatment. Even if it does have to be in private but the important thing is that the struggle to have him looked after has achieved a result.
|sammi Posted: 14/03/2009 11:14|
the important thing is that the struggle to have him looked after has achieved a result. - confused here.
Achieved a result. I don't call it a result when the Health service fails to treat a patient.
I don't call it a result when an individual by their own means has to fight and struggle on their own to get information which should be readily available to all.
I don't call it a result when a patient has to borrow money for treatment which should be readily available considering they spend a portion of their lives working and paying taxes for this NON-SERVICE.
Sorry but HE WASN'T LOOKED AFTER by anyone.
|Anonymous Posted: 16/03/2009 12:32|
Hi Sammi, I understood fromyour last post that your husband was scheduled for surgery? Is that not that case. If not, my comment was certainly in error. Sorry. But if so, then that surely is the most important thing. Spending money or usign health insurance for treatment which should be publicly available is not something you should have to do, certainly but it is a daily reality for half the country. If he hasn't been looked after yet, I sincerely hope he does get treated (be it in public or private) very, very soon.
|sammi Posted: 16/03/2009 19:09|
Had the surgery and boy what a difference.
Before it he could barely stand and was in such awful pain. he's sore from the surgery but now he can get up and move around, the bad pain is gone.
|Anonymous Posted: 18/03/2009 11:48|
That's great Sammi. Wonderful news. Best wishes to him for a full recovery.
|Aiso9 Posted: 09/07/2009 21:24|
Hi, I have chronic lower back pain with almost ten years. I have tried the 3 courses of epidurals and everything else I have come across. I am on a load of medication which is causing alot of other medical problems. The Spinal Cord Stimulator was mentioned to me yesterday. Was just wondering does anyone know if it is only done privately? Does anyone know how much it costs to have it done privately? Or if it is covered by Quinn Healthcare? Would be interested to hear from you.
|Anet Posted: 11/07/2009 19:05|
Hi, the spinal cord stimulator is done in both public and private. I'd talk to the consultant - he'd be able to give you information on it. I often hear patients talking positively about the stimulator. I dont know whether Quinn Healthcare covers the cost - I'd approach Quinn and enquire.... but I dont see why they shouldnt. VHI does cover the cost. If you go public, I'd say you will be facing the usual waiting lists... although you could enquire into the National Treatment Purchase Fund.... but would hold out too much chance for the NTPF given their budget is being totally slashed!