Chelmsford, Essex, U.K.:
Saturday morning breakfast T.V. news carried a report on a family fighting for their daughter's life-saving and life-changing treatment to continue. In order for it to do so the treatment will have to receive funding approval.
Two-year-old Indie Smith suffers from a rare blood disease, atypical haemolytic uremic syndrome (aHUS). Diagnosed a little before her first birthday the prognosis was not good for Indie. Her future would involve a series of hospital visits and stays.
A breakthrough came when Indie took part in a research program and begun tasking a drug called Eculizamab. As part of a research program there was no cost to Indie's family nor the cash-strapped N.H.S. That will change when Indie reaches her third birthday.
There are around 150 aHUS patients in the U.K. The annual cost of Indie's treatment, for the drug Eculizamab, will be £250,000. If the drug proves a suitable treatment for all 150 patients there could be a huge cost to the N.H.S. The treatment does not cure the rare blood disease, which means costs will continue throughout a patient's lifetime.
Funding for such treatments needs N.I.C.E. approval. The British government uses N.I.C.E, the national institution for health and clinical excellence, in such matters. They decide what treatments will receive funding. N.I.C.E. has to make tough choices, many of which result in heartbreak for patients and their loved ones. Without the treatment Indie faces a tough battle, probably ending in early death. The cost of N.H.S. care and treatment without the drug will be high. Here is what Indie's father and a representative of N.I.C.E said,
She had been unwell for several weeks with sickness and diarrhoea. With visits to our GP and no improvement she was eventually rushed to Broomfield hospital twice within 12 hours after suffering seizures. She suffered kidney failure, she was given a blood transfusion and placed on kidney dialysis. At this point indie was diagnosed with aHUS. When Indie's treatment runs out in October we will have to self-fund at an incredible expense of £250,000 a year, or Indie will have a lifetime on dialysis, constantly being in hospital. We are looking for all the help we can get in raising awareness for Indie's disorder A-hus and our struggle to fundraise."
– Gavin Smith, Indie's father
aHUS is a condition affecting the brain, gut, kidney and other organs for which there is a high mortality rate and no known cure. Eculizumab has shown promise as a treatment that can potentially halt the progress of aHUS and improve the quality of life of people with the condition. As with all our work, we will be in active dialogue with patients, carers, clinicians, commissioners and manufacturers to ensure that we develop robust processes for making decisions about these highly specialised technologies that are responsive to the needs of people with very rare conditions.
– Professor Carole Longson, NICE
Indie's family have created a web-page
where you can read more about this little girl, her treatment's condition and fund-raising events. The site reports "Indie has an infusion of Eculizumab every two weeks through a central line in her chest. This involves indie spending a day at Great Ormond Street Hospital. She is closely observed as she undergoes treatment and has many tests which all take their toll on her. She has various other drugs on a daily basis and her blood pressure, temperature and diet
are strictly monitored. As part of the clinical research study Indie will be on Eculizumab for two years, up until her third birthday when the study finishes. Indie has responded amazingly well whilst on Eculizumab. But she has less than one year of treatment remaining. And with dialysis as the only real option for Indie once her treatment finishes, we are now looking to self-fund this extremely expensive treatment at a cost of £250,000 a year".Opinion
What price a life? If Indie was your little girl no cost would be too high. That said no ordinary family can afford £250,000 a year for this treatment.
Budget restraints mean that the N.H.S. has to make tough choices, but there is still a great deal of money wasted. Currently N.H.S. management is returning from P.C.T.s, primary care trusts, back to G.P, general practitioner, level. The reform is costly. A great deal of money is being spent on this government initiated healthcare reform. Skeptics view the changes as privatization of the N.H.S., by the back door. The Conservatives, huge fans of privatization, promised to protect the N.H.S. but have had their sights on it for years.
The money being spent on the latest changes in the N.H.S could be better spent. As pharmaceutical companies develop new, life-saving and life-changing drugs the sky is the limit, as far as costs go. Surely it would be prudent for the British health service and government to invest in drug research, developing new medicines under the N.H.S umbrella? There has to be a better way than being caught in the grip of big pharmaceutical companies? In the long run in-house research and development must be a better option.
Watching footage of Indie playing, laughing and behaving as any other two-year-old you forget she is ill. If the treatment is withdrawn her health will change for the worse.
Should Indie receive treatment funded by the N.H.S.? The N.H.S promises "cradle to the grave free care" but does that include modern health initiatives? Why wouldn't it?
There are many more Indie's facing similar treatment funding problems with the N.H.S.
Sources: Help Indie ITV News Future fund-raising events Facebook petition reminder
The National Health Service in the UK faces many challenges. Some are just an ageing population, a diversity of patients in the 21st Century, the availability of more treatments and modern day expectations. Then there is money. Yes that old chestnut.The UK Coalition government has proposed reform of the NHS which will see funding reverting back to General Practitioners. This was the way of the NHS sometime ago. It will be a costly exercise to implement such changes. It always is. This means that money which could be better spent on patient care will end up being used for administration and planning. New posts will be created to implement the changes and they will not come cheaply.Whether the changes will benefit patients or make real savings we will find out in the future. If they don't then it could be another costly exercise to change things once more. And so on it goes.Already most hospital trusts are having to cut their work forces. Wards have been closed, staff numbers reduced and some services shifted into the private sector. This means that in an emergency situation many cannot cope. They are already working under pressure so an outbreak of the winter vomiting bug, which is ongoing now, can tip services over the edge.Today there is news once more that the NHS is failing the elderly.There have been many stories regarding poor health care of the elderly in the UK and the latest is with regard to cancer treatements. The report follows a poll by British cancer charity
Macmillan Cancer Support. SkyNews
45% of 155 GPs, oncologists and specialist cancer nurses surveyed said they have dealt with a cancer patient who has been refused treatment on the grounds that they were too old.
Macmillan said the UK has some of the worst cancer survival rates in Europe for older people.
Ciaran Devane, chief executive at Macmillan Cancer Support, said: "Health professionals' concerns about the prevalence of age discrimination in cancer care mustn't be ignored.
"Unless staff are given the time and training to carry out a proper assessment of a patient's overall physical and mental wellbeing, some patients will be unfairly written-off as 'too old' for treatment.
"The number of older people (aged 65 and over) living with cancer in the UK is set to rocket in the next 20 years from 1.3 million to 4.1 million.
"Unless the barriers to timely treatment are tackled now, many older people could die unnecessarily from cancer and services will become unaffordable."
Government Health Secretary Jeremy Hunt claims that the government is working with the Macmillan charity in order to address these issues. He accepts that there is still a great deal of work to be done to ensure that tose aged over 70 receive appropriate care. Look online though and you will see stories relating to this have been around for at least a year. That means that whilst Ministers procrastinate lives are lost.
13 years of working in the NHS has shown this blogger that if you work there long enough you will see all reforms come around again. The if it is not broke why fix it scenario never applies. Then when it is broken change is a long time coming.
Elederly patients with cancer tend to end up on Medical Elderly Wards rather than on the modern oncology wards. This is sometimes true of other specialities such as heart failure patients. When there is a bed shortage being moved is acceptable when it is due to an emergency situation. When it is normal practice something must be done.
There may be nothing wrong with a ward you are admitted to but if it does not have the level of care or facilities you need your prognosis will be poor.
Time to cut the management tier at the top of the NHS and reopen wards which are needed with the right staff.
The current government in wanting to move services away from the NHS into the private sector must take responsibility.
Early in 2012 TEK reported
on the plight of many women in the UK who had PIP breast implants. Whilst some had undergone surgery for these implants due to a cosmetic reason, some had done so following treatment for breast cancer.
However patients had come by these PIP breast implants though they were bad news. It was reported that they contained a low grade of silicone and could cause health problems. As the mainstream media reported world wide many of the women involved became extremely anxious. That was understandable. Initially the private clinics in the NHS where some women had received the PIP implants refused to act.
There was an outcry and a great deal of publicity and then the story faded away. That as we all know does not always mean that any issues have been resolved.
This latest report agrees that the implants are substandard but claims that they do not pose any significant health risks. The silicone used in PIP implants has been proven to be industrial grade and not suitable for use in an implant for a person.
Today the UK has published its latest findings regarding the French PIP implants. They have decided after a study that although they may carry a higher risk of rupture they do not cause cancer and are not toxic. Many women will see this as a cost ui=induced finding.
In 2010 the use of these PIP implants was banned world wide. The PIP company went bankrupt later that same year and the death of a woman in France from cancer was said to be as a result of one of these implants.
The product has caused problems in many countries. It is not approved for use in the US. The UK's latest report will not please those who feel that they have had a raw deal at the expense of PIP. NHS medical director Professor Sir Bruce Keogh, who ran the review, said, "This has been an incredibly worrying time for women."Repeated tests on different batches of PIP implants have been carried out in the UK, France and Australia according to international standards. "Those tests have shown that the implants are not toxic and therefore we do not believe they are a threat to the long-term health of women who have PIP implants".
Sadly only time will tell.
The advice for women who experience health concerns is to contact their GP. The removal of the breast implant can still take place. What however is shocking is that "so far 750 women have already, or will, have their implants removed on the NHS - 490 of whom had the implants put in at private clinics." That is a disgrace.
Having pocketed the money for implanting the PIPs their removal should be funded by those clinics also. Of course many have claimed that the burden would mean these clinics would have to close. With a government focused on increasing private health care that is bad news.
However so is the additional burden on the cash strapped NHS.
Related reading:http://www.tekjournalismuk.com/1/post/2012/01/harley-medical-group-pip-refusal.html http://www.tekjournalismuk.com/1/post/2012/1/pip-breast-implant-removals.html http://edition.cnn.com/2012/06/18/health/pip-breast-implants/
Funding of the NHS in the UK is by way of the government and the population. Just who handles the budgets and keeps things working well, or not, is about to change. The UK coalition government hope to implement anNHS r
eform bill that will hand the role of budget holder back to the GPS.
This is yet another retrograde step which of course will cost a small fortune. If a future government decides to reverse things it will be all change and all pay once more.
Obviously the current UK government hold the GPs in high esteem. After all if you are about to hand over a huge wad of public money to any management service you need to know that you will get value for money and that those involved are honest.
The following may not mean that GPS on mass are dishonest but it must surely question their competency to be the NHS budget holders.
A current investigation has discovered that in one year alone GPs in England and Wales were overpaid by £6.1 million. The problem has been "ghost patients". These are patients who have died, are failed asylum seekers or who have moved out of the GP area but have never been removed from that doctor's list. Perhaps a slight time delay would be understandable but it was discovered that some of the patients had moved 30 years ago. Currently UK GPs receive £65 a year for each patient whether they see them in that time or not.
The DoH, department of health has admitted that there could be as many as 2.5 million such patients registered. The £6.1 million overpayment relates to a mere 950,000 patients that were discovered during the audit and removed. Whilst the saving this represents is good what about the rest? How come this situation was left to fester for so long? Will the government be reclaiming this money back from GPs? Of course it will not.The latest DoH estimates mean that the government could be wasting money to the tune of £163 million a year on "ghost patients"
Maybe the fact that GPs have been receiving much more money than they were entitled to has given the government a false perception of how efficient they are. Once the funding for "ghost patients" is removed will the GP practices be as effective?
It still leaves this blogger questioning the sense of handing over the NHS budget to GPs.More on the GP audit here
Most people in the UK accept that the UK NHS is far from perfect but few want this health service "messed" about with unnecessarily. The vast majority of people in the UK want the NHS to be maintained and upgraded when needed but continue as the UKs main health care provider. It is a widely held belief in the UK that the Tories want to dismantle the NHS by whatever means possible. Look back over the last few Tory governments and the writing was on the wall. However David Cameron came to power, albeit as part of a hastily formed coalition, on a mandate of protecting the NHS.
During the Thatcher years the NHS took a battering. Waiting lists were increasingly long, staff demoralised and infection rates high. When Labour came to power in 1995 this was the state of the NHS. It took time to implement real change but gradually waiting times improved and infection rates reduced. In inner city areas strict targets were harder to meet than in sparsely populated rural areas. But positive change happened.
One personal example relates to the waiting times for Cataract surgery in the area where I live. Working for the NHS since 1999 my experience of the waiting times for such eye surgery, at that time, was a year or two for the first eye followed by up to three years to have the second eye operated on. Personal experience as an NHS patient in 2010 was a wait of around six weeks for surgery on one eye followed by a wait of six weeks for the second eye. What a huge improvement.
The Labour government tightened targets time and time again, sometimes unrealistically so but, overall, it worked. Already waiting times for that cataract surgery in the area where I live have begun to lengthen. Slowly and slightly but the signs are there yet again.
The problem is that if you work for the NHS long enough you will see each change come around again. This is often decided at local level. Each time it costs. A simple name change to the particular NHS Trust and new paperwork would be bought to replace the old. The costs were ridiculous. At last most items are now available online at each trust saving time, money and environmental waste. However change is still inflicted almost at the drop of a hat.
The UK NHS serves a huge amount of people. With 21st Century problems such as drug abuse, teenage pregnancies and an increasingly longer living population resources are under a strain. Add to that medical advances and improved diagnostics which offer a cure to so many illnesses and diseases, but which don't come cheap, and it is easy to see why the NHS struggles to keep within its budget.
Change for changes sake though is demoralising for staff and patients, costly and pointless.
The current NHS Reform Bill has many critics. It also has some who are in favour of the changes. However many in the medical profession worry about its long term consequences. It will do nothing to strip back unnecessary red tape and administration costs at the highest level. It will however cut front line jobs. Already a job freeze in many trusts has reduced working effectiveness. If a person working 20 hours a week in one job has to cover two or three jobs in that time, none will be done properly. Each will get a "half ass" job done. This will inevitably lead to mistakes and poor standards which in turn will lead to financial penalties and fuel Cameron's call for change. And on it goes.
Coalition Minister Andrew Lansley is adamant that the NHS Reform Bill will be passed. It has been returned to the House of Commons more than once for amendments, from the House of Lords. It now seems that for the government it is make or break time. In spite of calls to scrap the Bill the Coalition will see it through come Hell or high water. The changes will see the budget control of the NHS passing to GPs, general practitioner groups, rather than PCTs, primary care trusts.
Perhaps it may be worth pointing out that huge sums of money were spent creating PCTS, and their associated costs, only around eight years ago. They are now to be abolished in 2013. The same executives and management teams will be employed but by a different organisation. Setting up the GP groups needed will also cost a small fortune.
At the heart of it is a desire to move away from traditional hospital care. If you are old enough you will have memories of Thatcher's care in the community which closed, for example, many Mental Institutions in the UK leaving vulnerable people cared for in the community. In reality the care was lacking and they were failed.
If like me you are cynical of the Tory's reasons for this latest NHS reform you may believe that it is all about privatisation. The building of privately funded hospitals and the sale of NHS ones. That to some extent has already begun. Look for who are the executives of such private hospitals and there will be few surprises. Perhaps one surpirse was a German Company involved with taking over UK NHS hospitals.
This was kept fairly quiet.
Today Mr Cameron and Mr Lansley have been meeting with some of the people who will have to work with what this bill offers. However the meeting will be more remembered for the health care professionals that were excluded, than for those who attended. Put simply the only medical professionals invited were those who agreed with the planned reforms. The BMA, British Medical Association, and the Royal College of General Practitioners were excluded.
As the Guardian reported
regarding opposition to the Bill, "David Cameron, facing widening opposition to the reorganisation from across the health service, sections of the Liberal Democrats, crossbench peers and fellow Conservative cabinet members, believes he has no alternative but to plow on with the health bill, and show there is a viable support base for the changes within the health service".
What a farce!
The Guardian goes on to report former UK foreign secretary and doctor Lord Owen as saying, "He(Cameron) is clearly trying a policy of divide and rule in the hope that he can break the opposition to the bill by only asking those he believes will support him. The health service is based on much more integrated team work these days right across from nurses, doctors, commissioners and clinicians, and this is not the way to treat an integrated health service. A divided health service cannot function effectively. The prime minister may think he can outmanoeuvre or override the BMA in the same way that Clement Attlee and Aneurin Bevan did when the 1945 Labour government introduced the National Health Service in the face of opposition of the BMA. But the BMA in 1946 was much more evenly divided than they are now and Attlee had a clear electoral mandate from the British people to push through his reforms – something Cameron does not have."
Which brings us back to the start of this report. No David Cameron does not have the will of the people behind him as far as NHS reform goes. He may have a handful of cronies and the like but not the will of the general public. Neither did he have a clear majority giving him the edge in such reforms.
This blogger's conclusion is that maybe what Lord Owen said about, "A divided health service cannot function effectively",
could ultimately be the Coalition's purpose. After all Cameron knows we all love the NHS so perhaps he wants to ruin it to the extent that we hate it and surrender. Do not let him win.Remember many of the so called health care professionals happy about the reform of the NHS have monetary links to private health care and a vested interest in this Bill.
Many countries around the World see the UK as a Welfare State gone mad. This presumably is because of what makes the news. The media searche for wild and dramatic stories usually staying away from the mundane.
For this blogger the UK welfare state offers a safety net for those in need, and this has been systematically abused by some. The fraudsters come from all age groups and walks of life. They tend to have no morals, it seems to me. After all if you fake illness in order to qualify for disability payments you are robbing the disabled. Without such rogues there would be more in the pot for the genuine cases.
As it is successive governments, especially Tory ones, have tried to cut welfare beneifts. In the end the genuine cases tend to suffer and the fraudsters prosper. Let's face it many of those people are adept at pulling a fast one.
Some countries rely more heavily on charities than the State but is that practical and should it be a preferred method?
Your view will depend upon your personal circumstances during your life. It will have been touched by that of your family and what you have learned from history. For those who would like to see the welfare state in the UK dismantled read on and see if that would still be your choice.
Born in the early 50s in Yorkshire this blogger was lucky enough to know the NHS. Founded in the 40s the NHS promised health care in the UK from the cradle to the grave. Listening to elderly relatives when I was young I soon realised this had not always been the case.
A great aunt of mine had become the woman of her household at the grand old age of 12. When her mother died that was as far as her schooling went. She had to be the home-maker for her father, two sisters and a brother. Never marrying she worked till her late sixties cleaning. Her limited education had prepared her for little else. The addition of my father, her nephew, to the household as a young child added an extra burden. Money became so tight that when in time she needed her teeth removing for dentures this was done without anaesthetic. After all that cost sixpence.
Visits to the doctor were few and far between in the post World War One period in the UK as that too cost. My Mum and her siblings were lucky as Grandad always had a job, working for British Rail. This meant that unlike classmates they also always wore shoes. In a Yorkshire city the climate is hardly temperate enough for bare feet. Sadly Grandad did not make old bones, in line with too many in my family. Who said hard work never killed anyone?
Mum did not walk for quite some time when she was young as she had Rickets. There was also a young brother who died. Such were the times.
Whilst there will be many younger people in the UK who think that the Welfare State should be a thing of the past they should consider all of this very carefully. The above is not meant as a sob story but just a small part of my family history. There is much more, some just as bad. It is meant however as enough to prove a point. That point is that you cannot rely on charitable money or Church donations.
The family were all church goers. Believers to the core. That did not help them when money was tight. Without the State they struggled to survive. They made it but not all can and not all do. Along the way children are too often damaged.
Charities do sterling work. They are vital in plugging the gap. They however not should be left to provide the only help. In times of financial trouble donations to churches and charities often dry up. Without a safety net many, including children, will face an uncertain future.
The family history above begins in early 1900 and does not improve until the 1940s with Welfare State legislation. The NHS and the Welfare State have saved many a soul. In the worldly way that is. The fact that it is now abused does not mean that it is a bad resource. Simply that we need to re think how to police it in line with 21st Century greed. It should be there for those who suddenly become unemployed, have to retire early through ill health and more. Expecting all people to provide for themselves does not work. We cannot all be highly paid medical professionals, for example. There will always be a need for people to work in the lower paid jobs. That should not exclude them from the basics of life.
However smug you may feel in your own life remember times can change. Unemployment, ill health, natural disasters and war are just a few of the events that can rapidly change your life for the worst.
If you are in the US you will no doubt agree. That is your prerogative. For me I have always worked but the fact that should the worst happen the NHS will provide healthcare, The State disability allowance and more helps me sleep at night.
This week it was the anniversary of Charles Dickens. We should never forget that his horror stories of Great Britain in the past were based on fact. People were thrown in jail for debts, they were sent to the poor house and the work house because a parent died and in general the poor were abused. That must stay a thing of the past and never return. So charities keep up the good work, as and when you can, but government leave our NHS and Welfare State alone please.
Related reading - Is Welfare really necessary?
In the UK we tend to take our National Health Service for granted. At times we all complain about it. When we receive exceptionally good treatment few of us bother to praise the NHS. After all the best should be the norm, right? Well yes but would it hurt to occasionally take a step back, take a long hard look and consider the alternative.That said people in the UK tend to be protective of the NHS. It is a very British care system, one that may need to be tweaked from time too time, but one that few would want to wave good bye to.David Cameron made much in his election manifesto about how the NHS was safe in his hands but he has since proved that is far from the truth. The NHS has been under attack on all fronts. Reform looks set to put funding back in GP hands.
If you work for the NHS, as this blogger does, you will find that work there long enough and you will see a circle of changes. Almost 13 years down the road the latest changes are reminiscent of a few years ago.Much is made that over paid administrator posts will be rightly cut but in reality it is front line jobs that are going. Those at the top handle the job cuts and predictably protect themselves.The NHS is facing too many changes at one time. In order to meet demands and targets it is disappearing
in a type of twilight zone. Government fines are levied against some sections, constantly making budget targets impossible to achieve.February 8, 2012, the NHS reform was discussed in UK Parliament. The House of Lords has again rejected the bill without more amendments. The Tories though look set to continue like a dog with a bone. Labour leader, Ed Miliband, got the upper hand against Cameron the Commons, in spite of the derision and smarm eeking out of the Coalition front bench. David Cameron's only defence seemed to be a personal attack. He attacked Mr Milband saying that Ed's position in the Labour party was fragile. We all know that attack is the poorest form of defence which this proved. Mr Cameron had little to say that was positive about the NHS reforms, so launch a personal attack on the Labour leader instead. I ask you?Even an oped in the Financial Times agrees that the reform plans are a mess.
As it says, the plans lack the necessary skill. If Cameron chooses to belligerently stay on the same NHS path it could prove to be his political downfall. Could we be so lucky?
September 4, 2011
As an NHS worker in the UK this story is both dear and near to my heart. As a potential NHS patient also I have a vested interest in protecting and maintaining this wonderful UK Health Service. With retirement only a stone's throw away it is my possible patient status that offers me the greatest cause for concern.
Many people believe that the Tory Government have no such ideals and would be happy to dismantle the NHS. Today more evidence of this has been revealed.
The UK Coalition Government should be striking a balance between Tory Ideals and those of their political bedfellows the Liberal Democrats. Fair enough the Liberal Democrats only received a small amount of seats at the election but without their support the Conservative Government would be facing an election.
Peer Shirley Williams, former Labour poilitician and long time activist of the Liberal Democrats, has voiced her concerns over Health Minister Andrew Lansley's plans to reform the NHS. The NHS may need some updating but does it need an expensive major overhaul right now? The answer has to be no.
The latest news is that the government are looking at plans to sell-off the management of 20 UK hospitals to overseas companies. This is bad news for all concerned. Patients, the community and the staff will face an uncertain future. If this happens you have to assume it wil lead to further sell-offs. If not the NHS will be operating a worse health-care post-code lottery than ever before.
Emails have been released which show the ideas. Lansley as usual has poo pooed the information. It was only released after a Freedom of Information request by non-profit investigations organisation Spinwatch. So if it is nothing to worry about why all the secrecy?
Lansley again states that privatisation of the NHS is not on the cards but this move would be seen by many as the start of it. Sadly we all rememeber Maggie Thatacher and her government's sell-off of the UK. This left less wealth for future governments and future generations. It also left an unworkable rail system and more.
Personally, it just shows the sort of reform this Government are considering. Just who the foreign investors would be is not known. If it were to happen the plan is to sell one hospital at a time. I guess they thought they could sneakily achieve thier ends through the back door as usual. Think again David,