Comments for en-gb 30 Sat 18 Apr 2015 07:33:18 GMT+1 A feed of user comments from the page found at jessica forester [Unsuitable/Broken URL removed by Moderator] After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”Other recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. Avneesh Gupte, the Neurosurgeon at Noble Hospital performing the procedure has been encouraged by results in Cerebral Palsy patients as well. “We are fortunate to be able to offer the treatment because not every hospital is able to perform these types of transplants. You must have the specialized medical equipment and specially trained doctors and nurses”. With regard to MS patients, “We are cautious, but nevertheless excited by what patients are telling us. Suffice to say that the few patients who have had the therapy through us are noticing recovery of neuro deficits beyond what the venous angioplasty only should account for”.Dr. Unmesh of Noble continues: “These are early days and certainly all evidence that the combination of liberation and stem cell therapies working together at this point is anecdotal. However I am not aware of other medical facilities in the world that offer the synthesis of both to MS patients on an approved basis and it is indeed a rare opportunity for MS patients to take advantage of a treatment that is quite possibly unique in the world”.Autologous stem cell transplantation is a procedure by which blood-forming stem cells are removed, and later injected back into the patient. All stem cells are taken from the patient themselves and cultured for later injection. In the case of a bone marrow transplant, the HSC are typically removed from the Pelvis through a large needle that can reach into the bone. The technique is referred to as a bone marrow harvest and is performed under a general anesthesia. The incidence of patients experiencing rejection is rare due to the donor and recipient being the same individual.This remains the only approved method of the SCT therapy. For more information visit Mon 04 Jul 2011 12:01:09 GMT+1 Mtwain2011 While it is fantastic to know that a lot of attention is being put on children's heart surgery, the idea of cutting down the number of centres seems weird. I am not a medical person by any means, but I strongly believe that it would rather make sense to improve the conditions and equipments in the hospitals and to hunt for more skilful doctors.Considering the fact that several parents have turned up to voice their support for the unit and its surgeons, why should the government implement closures and axing of services? Any given health centre is meant for serving the public. On one hand axing of services would make these centres lose their status and reputations. But what is more important is the fact that common people may not have easy access to the units if the treatments available are limited to certain centres. The NHS over the years has done a great job in serving the country as well as its staff members. Click nhs staff discounts for the various benefits offered to NHS staff members. The NHS will have a big role to play in deciding on what is best, under these circumstances. I suppose a lot of studies, reviews, arguments and changes might be on the way before a firm decision is implemented. Sat 05 Mar 2011 10:33:38 GMT+1 leanne butler This post has been Removed Thu 03 Mar 2011 02:19:12 GMT+1 Dr Henk de Vries Paediatric cardiac surgery is declining because the incidence of congential heart disease is declining. It is thought but not proven, that because now women take folic acid early in their pregnancies it reduced the incidence of congenital heart disease. As such not only in the UK but also in the Netherlands and other European countries units have shut down. Experience in complex surgery is absolutely paramount and unless a unit does over aprox 2-300 procedures a year it will show up in the results. For very complex surgery this applies as well and as such Birmingham attracts for example Norwood procedures who do relative well there but is not matched elsewhere because of its volume. Hence a pragmatic decision has to be made to centralise it and have large volume centers in order to build up the experience and train new surgeons who are going to take over from the established surgeons of today. This will be uncomfortable for smaller centers who have also seen their adult workload decreasing. However you certainly would not want them to go the a 'Bristol curve'.For the parents I would only say - does travel time really matter that much if your child has a much better chance of survival or is much likely to be re-operated. Sat 26 Feb 2011 19:12:03 GMT+1 CHDWARRIOR My son was born with very complicated CHD, it was not detected untill 2 days after birth, he then had to travel to London (140 miles) by blue light as he would not have made it, if this distance was further he may not have made the distance.Also, What happens with with parents accomodation? myself and my sons mum spent several weeks in accomodation provided by the hospital, if this change gos ahead then it will mean less accomodation available for parents needing to stay with thier children, it is vital that the parents stay with their children!.Why can't more surgeons, nurses, consultants be employed? it seems so easy to turn around and close units rather than open new ones, what is wrong with this country?Cardiac surgery is often carried out as an emergency and access to a cardia surgeon/theartre is a must imediatly, bone marrow/cancer patients with respect dont really have this sense of urgency, someones life is not minutes away from from dying at the time of diagnosis where as a heart child can die withing a few minutes if surgery is not carried out, i have seen open heart surgery carried out on the ward as it was risky moving them to theatre as time was of an essence.We need to save these units or children will die but im afraid that those with the responsibilty of making this decision dont have a bloody clue, what would they say if there son/daughter died on there way to a hospital hundreds of miles away......i made the right choice?...i dont think so!.What sense is there in closing 4/5 units, why not spend the money and make them bigger and better? oh no no we cant do this we need to close them and turn this country in to a third world country......DISGUSTIN and it makes me SICK that my child may lose his life simply cos they are not in touch with the real world. Tue 22 Feb 2011 11:58:11 GMT+1 heartop MurphyS - The sad truth is the people who have made the decisions really don't care.The Children's Heart Federation, Little Hearts Matter and GUCH have sold their charities and parents down the river. There were lots of biases and old axes to grind, as well as a whole load of self aggrandisement. It's terrifying that such decisions can be so heavily influence by the select and unrepresentative few. Sat 19 Feb 2011 21:34:30 GMT+1 MurphyS My son had corrective surgery last year at Southampton when he was four months old after being diagnosed with a congenital heart defect when he was 24 hours old. His care from the day he was diagnose to this date has been exemplary. My understanding is that Southampton came second only to Birmingham as a centre for paediatric cardiac care, as part of this review. Clearly the team, from both the cardiac unit and intensive care have worked hard together to create a centre of clinical excellence. And yet it seems Southampton, like the Royal Brompton, is highly likey to close because apparently Southampton is within a two hour transfer time of London. Surely this review should be recognising centres of excellence and optimising the experience and the skills of their consulting, operative and nursing staff to deliver the best care to patients, rather, it seems, than how long it takes to get from A to B and closing succesful units in the process. Fri 18 Feb 2011 14:54:57 GMT+1 Roger I find this debate extraordinary. Cancer services have been concentrating in this way for over a decade, and the work on implementing this requirement is not yet finished. Patients hardly complain about additional travel. The drive for change has come from numerous studies which demonstrate that treatment in centres with a minimum annual number of patients produces better outcomes. The evidence is inarguable. I can see no reason why the same arguments do not apply in any area where complex surgery and highly specialist technical support is required. Children with bone cancer get surgery in just 5 centres in England (plus a centre in Scotland). I cannot see why anyone would regards children's heart surgery as less of a specialist priority than children's cancer. Fri 18 Feb 2011 13:23:48 GMT+1 cemc @ NickECHO - in response to your comment regarding pregnant women having fetal echocardiograms/checks before their babies are born - my sister has had 2 children (I haven't had any yet)and is pregnant with her 3rd. Due to my medical history of a heart defect despite my consultants and the people my sister saw when she had her check in appts for her pregnancy opinions that my heart defect was rare & not hereditory which meant it was unlikely that they would inherit it from me she was given a fetal echo when she was carrying her 1st 2 children & both times the tests showed nothing. She was advised to have 1 again this time round but when she went to book an appointment for 1 they told her that they have changed the ruling on it & that they now only do the tests if it was the baby's parents or grandparents (asuming the baby's siblings also) they would do the test but because it was me that had the problem & not someone who's not more directly related to the baby they didn't need to do it. In a respect i couldn't understand as I am my sister's full blood sister but that's what they told her! Obviously if I have children I fully expect it to be brought up. I do agree that it should be a regular check up that babies have esp in the light that so many young adults appear to have this sudden death syndrome also. Fri 18 Feb 2011 11:21:22 GMT+1 cemc The idea of shutting these units is supposedly so that we have very good fewer specialist units. Well for those who don't know I would like to point out that the whole heart department at the Leeds General Infirmary took over a specialist heart hospital in Leeds which was called Killingbeck Hospital in 1997 - I know this as I was a paediatric patient there. I was initially admitted to the LGI (Leeds General Infirmary to us locals) in heart failure at 7wks old & transfered to Killingbeck the next day. I am now 31 and had it not been for both of those hospitals I wouldn't be typing this now! Had I not gone into hospital when I did I would have DIED within the HOUR and bear in mind at the time I lived at the most FIVE MINUTES away from the LGI and niether did I have or ever have had surgery the only thing they could do for me was to put me on medication & hope for the best - thankfully it worked. Had I had to go further than that or Leeds or the very local area in general I wouldn't be here now. So tell me what was the point in shutting a specialist hospital to put a specialist unit into a major hospital for an important part of that to be closed down also? The heart department at the LGI was REPLACING a SPECIALIST HEART hospital & if they shut an important unit of it when they are aiming for good specialist units then it defeats the object of replacing Killingbeck & makes the people trying to strive for good heart units for children sound like hypocrites. Fri 18 Feb 2011 10:45:46 GMT+1 Kiterina My nephew is currently being treated at the Glenfield Hospital. His mother (my sister) is someone who is able to comment on how important it is that these facilities are avaialble to as many people as possible. My nephew is 3 weeks old on Friday 18 Feb and has been in hospital since he was 5 days old. He was transferred from QMC in Nottingham and has been at Glenfield since he was a week old. The expertise available at the hospital is critical to his recovery and the fact that someone thinks it is a good idea to move all such treatment to Birmingham is beyond belief. It is an extra 40 miles on the journey and I understand very limited parking facilities etc. The parents of these children are under enough pressure and feeling stressed out enough without having to deal with this on top of everything else. I accept all the comments here about the distances to be travelled for the ill children but you must add to this the distance that must be travelled for parents and extended family who are trying to be there to support their loved ones through the most harrowing of circumstances. Reduction of the number of units to treat such conditions is ridiculous and in my view can only lead to a reduction in the level of care being provided. Thu 17 Feb 2011 08:22:27 GMT+1 leicesterfan Fergus. It is easy to close down units which have taken 20 years to build up. The truth of the matter is the Childrens intensive care units without Cardiac surgical work struggle to employ staff to work- both medical and nursing. Hence the quality of care goes down for all children for the region. For the amount of population this country has, reducing the number of good units to 6 or 7 is like providing third world intensive care for children. Children die while being transported if the distances are long and without an air transport service in this country(the only western country without air transport) more children are going to die before they reach the place where they need urgent operation. And looking at the units which are likely to be kept open they are the ones which are always full and never able to take patients urgently. So if the plans go ahead then it only means more harm to the children than bettering service and make the post code lottery a reality because a large number of counties will be left with poor intensive care units and others have specialised ones. Wed 16 Feb 2011 17:59:07 GMT+1 John_from_Hendon #6. LeedsPilgrim wrote: "I'm sure the next time a major report on care for the elderly is published, Fergus will be right there."History is not on your side - he ignored the topic yesterday! Wed 16 Feb 2011 16:33:39 GMT+1 NickECHO @ John-from-Hendon. I do care very passionately about the care for the elderly, but the CHD children I am involved with may not make it to old age, so that is the battle I choose to fight first. Wed 16 Feb 2011 15:41:02 GMT+1 NickECHO @ LeedsPilgrim. It is a question of whether the increased distances travelled are worth it for better treatments. The proposals will also recommend better satelite clinics with specialist cardiology teams, so the 'everyday' treatments, check ups etc. will still be relatively local.We already see a large number of long distance recoveries to surgical centres, so that service will have to be enlarged to cope.We must also push for better pre-natal scans, so that CHDs are picked up early and the best treatment plan put in place from day 1. It is disgusting that it isnt routine when it is the most common congenital defect (1 in 140 births are CHD). Wed 16 Feb 2011 15:37:18 GMT+1 LeedsPilgrim #5. John_from_Hendon said "You don't get it do you! What Fergus's choice is about is that it is OK to write about cuddly little babies but not about gnarled old people - both deserve the best possible treatment don't they?"We do get it John. The reason Fergus is blogging about this today, is that following a review which has, in one form or another, been ongoing for ten years, the final report is published today. As he is writing a topical blog, Fergus is quite right to blog on the subject today, it's current! The report published *this afternoon* will have a huge impact on the lives of medical staff, patients and parents across the country, so Fergus is writing about it *this afternoon*.I'm sure the next time a major report on care for the elderly is published, Fergus will be right there.The choice of subject matter is simply about the fact that this is happening today!! Surely you don't expect Fergus to ignore the biggest story of the day in health to write a general piece of care for the elderly? Wed 16 Feb 2011 14:57:51 GMT+1 John_from_Hendon #2. NickECHO wrote:"@John. Because this blog is about Paediatric Cardiac Surgery!"You don't get it do you! What Fergus's choice is about is that it is OK to write about cuddly little babies but not about gnarled old people - both deserve the best possible treatment don't they? Apparently not for Fergus! (I am being unfair to make the point!) I also suspect that it is very easy to get health service workers the be caring and enthusiastic about the plight of an infant but far far fewer see the elderly in the same way as people.Ever one of us will be an elderly person and die and the way the NHS handles our needs should really matter to us all. Wed 16 Feb 2011 14:22:55 GMT+1 LeedsPilgrim My wife works in one of the cardiac surgery units involved in this review. Having discussed this topic many times over recent years, I am struggling to understand the apparently unequivocal support from so many health organisations. At the hospital where my wife works, children born with heart problems are cared for in the ICU, operated on by surgeons at the hospital, then cared for in the ICU until they have recovered. By drastically cutting the number of centres carrying out operations, you greatly increase the distance a critically ill child has to travel to be operated on.Think of the logistics of transporting a newborn, possibly premature, baby with complex heart problems, associated breating difficulties, susceptibility to infection etc, not mention a traumatised family, over a distance of potentially 150 miles or so. I know if my child was this fragile and this desparately in need of surgery, I would not him or her to be spending two or three hours in the back of an ambulance, on minimal equipment, with only one health care professional on board. If Leeds were to close, a child born with a congenital heart defect in Hull is now looking at a trip of 125 miles to Alder Hey, 142 miles to Freeman in Newcastle, or 137 miles to Birmingham. I look forward to reading what the review has to say about this massive increase in travelling times/distances for critically ill children, and the increase in risk this presents. Wed 16 Feb 2011 13:31:29 GMT+1 Megan With such a technically-demanding and difficult treatment such as child cardiac surgery, it makes sense to concentrate talented practitioners in centres of excellence - and then to locate said centres of excellence around the country so that wherever you live one is accessible should you require their services. The idea of keeping existing units to provide more local diagnostic and out-patient provision, whilst the actual surgery itself is practised in centres of excellence is sound. Like anyone at the top of their game in any trade, specialist child cardiac surgeons will benefit from the collegiate approach, sharing ideas and best practice on a day-to-day basis with their peers. Some thought should be given, however, to providing more distributed services by high-quality internet linkages including telepresence and video links to enable such sharing of ideas and practices between surgeons and other paediatric cardiologists. Wed 16 Feb 2011 12:25:18 GMT+1 NickECHO @John. Because this blog is about Paediatric Cardiac Surgery!@ Fergus, can I take issue with your phrase "The unit at the John Radcliffe Hospital in Oxford has already stopped operating after a run of deaths last year".This is unfair on Oxford, who rightly and correctly flagged an apparent statistical anomaly of 4 unexpected deaths after surgery. This was fully investigated and the conclusion was that the deaths were not due to bad surgical procedures, but that the size of the unit presented a potential risk.The surgeon was vindicated and is working elsewhere in the UK now.Your phrase paints a melodramatic image, which can only have a negative effect. Can you change it please? Wed 16 Feb 2011 11:49:34 GMT+1 John_from_Hendon Fergus,You care (to write about) about 10% of the 3600 child heart operations a year - but not about yesterday's story that effects 100% of the country - the near death care of the elderly. Why? Wed 16 Feb 2011 10:36:14 GMT+1