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March 12, 2009
Exclusive: An American National Health Service? (Part Two of Two)
The Limits of Health
As described in Part One, the UK government agency designed to recommend medicines for use in the NHS is called "NICE." This agency has been criticized for only approving cheap drugs. The body naturally recommends generic drugs, rather than "brand-name" drugs, as they are cheaper. In Scotland, the agency that recommends drugs for NHS use is called the Scottish Medicines Consortium (SMC).
Decisions by NICE or SMC are almost always based on cost or "practicality." Their decisions relate to the NHS and as such, these agencies do not operate like the FDA. Decisions about legally licensing drugs for use in Britain are first made by the government's Medicines & Healthcare Products Regulatory Agency (MHRA) or by the EU's European Medicines Evaluation Agency (EMEA).
Many drugs which are licensed, and are known to have medical benefits, are not recommended by NICE for cost reasons alone. These drugs include medicines for bowel and lung cancers, mesothelioma and bone marrow cancer.
Initially, NICE refused to recommend the breast cancer drug Herceptin (trastuzumab) for cost reasons. After successful litigation by patients, the agency relented, finalizing its views in June 2006.
Another clinically effective drug which NICE refused to recommend because of its cost was Sutent (sunitinib), for use against certain kidney and stomach cancers. It was approved by the FDA in January 2006. Sutent, a "multikinase inhibitor" manufactured by Pfizer, was licensed for UK use in July 2006, but NICE has not recommended its use.
On October 9, 2006 and again on February 12, 2007, SMC advised against use of Sutent. On July 9, 2007 the SMC repeated its decision, specifically citing costs as reasons for not recommending the drug for NHS use.
Dr. Paul Nathan, a consultant oncologist, said of SMC's decision: "The NHS is saying to [patients], 'Tough luck, there's nothing we can give you.' But that is not the case. If you lived in North America you would get these drugs, but not in Scotland." The SMC decision has not been reversed. Last week NICE too confirmed that it would not be recommending Sutent for NHS use.
When the NHS denied patients potentially beneficial treatments, merely because NICE decreed that they were too costly, many patients who could afford these drugs paid for them privately. What sort of institution would justify punishing a person for seeking to supplement their health care to increase their chances of staying alive? Two institutions have done so – the NHS and the Labour government.
Linda O'Boyle suffered from bowel cancer. She decided to pay for the drug Erbitux (cetuximab) which was unavailable on the NHS. This drug had been licensed for UK use in June 2004, but in January 2007, NICE refused to recommend it for NHS use.
In 2007, Alan Johnson, who is (still) the British Health Secretary, ruled that he would not allow patients to "top up" their treatment by paying privately for extra drugs. He justified this on the grounds that such a situation would create a "two-tier Health Service." I demonstrated in Part One of this series that he presides over an NHS that is multi-tiered, providing varying levels of care and drug treatments in different regions.
When Linda O'Boyle chose to pay for a drug that the NHS refused to fund, the NHS decided to make her pay – literally. Southend University Hospital NHS Foundation Trust forced her to pay for the other care that she was receiving. Over two months, Mrs O'Boyle had to pay £11,000 for care that would have been free, had she not opted to pay for the drug. A spokesman for the trust said: "It is explained to the patient that they can either have their treatment under the NHS or privately but not both in parallel." Mrs O'Boyle died at the end of May, 2008.
News that Linda O'Boyle had died ignited a media storm. She had been the first patient to die while fighting for the right to top up their care. At the time, six other people were legally challenging Johnson's NHS guidelines.
The outcry following Mrs. O'Boyle's death led to a review by Professor Mike Richards, published on November 4, 2008. On the same day, Alan Johnson made a speech to parliament, in which he announced that the top-up ban was ended. He declared that "NHS care should never be withdrawn" and said that private and NHS care should be kept separate. He said that "there must be tight controls to prevent the NHS becoming a two-tier system."
However, last month, an official from the government's Department of Health admitted that it was a "theoretical possibility" that patients in neighboring NHS beds with the same illness could be receiving different treatments, based upon their ability to pay.
The NHS prides itself in being – like most public bodies in Labour's socialist-controlled Britain – against all forms of discrimination. Racism, sexism, ageism, homophobia are all officially outlawed in the NHS. But on the issue of religion, the NHS appears to blatantly discriminate against Christians, while indulging minority religions.
Religious Inequality
Abortion is a controversial topic, but it is carried out by NHS doctors for "social" as well as medical reasons. It is illegal to carry out abortions in the third trimester (after 24 weeks) unless there is a valid medical reason, such as endangerment of the mother's life. In 2004 an enquiry was ordered after it was discovered that a charity funded by the NHS was recommending that women in their third trimester should go to an abortion clinic in Spain to obtain late abortions. The charity, British Pregnancy Advisory Service (BPAS) received £12 million per year from the NHS.
The religion of those going to the clinic was not recorded, but it is known that one girl who had a late abortion at the Ginemedex clinic was forced to attend by her Muslim father. He was later convicted, along with the girl's two brothers, of the "honor killing" of her boyfriend, Arash Ghorbani-Zarin (pictured). Arash had wanted to help raise the baby, but Manna Begum's father wanted her to undergo a forced marriage to a stranger. In 2005, a doctor was offered compensation by an NHS trust at an employment tribunal. Dr. Joseph Erian had been forced out of his job as an NHS ophthalmologist at Pilgrim Hospital in Boston Lincolnshire, when his Muslim co-workers discovered he was a Christian. Unsurprisingly, no action was taken against the Muslims working in the NHS who drove Dr. Erian from his job.
Omer Butt, a dentist in Bury, Greater Manchester, forced one woman to cover her head Islamically, before he would give her NHS treatment for her toothache. Butt – whose brother Hassan had been a spokesman for the pro-terrorist group Al-Muhajiroun – was found guilty of misconduct by the General Dental Council's professional conduct committee. He was only given an admonition, and was free to continue practicing dentistry.
In Preston hospital, Lancashire, Muslim women patients are being offered a costume that – despite its similarities to a biohazard suit – is an NHS-designed burka. The costume was dreamed up by an employee of Lancashire Teaching Hospitals NHS Foundation Trust.
In August 2007 NHS regional bodies in Scotland, advised that non-Muslim NHS staff should show consideration for Muslims who might be fasting during Ramadan. Suggestions included not eating in front of Muslims, and to move food trolleys away from Muslims. NHS Lothian issued a statement to decry the media furor. However, as pointed out by Theodore Dalrymple, the statement could not deny that such comments had been made.
In December 2007 it was reported that hospital staff in wards controlled by Mid Yorkshire NHS Trust had been ordered to regularly move Muslim patients' beds so that they could be aligned to Mecca. The order had originally required that all Muslim beds should be moved five times a day, and only at Dewsbury and District Hospital, West Yorkshire. A few days after the initial decree, the NHS trust declared that only the beds of terminally ill Muslims should be turned to align with Mecca.
Britain's commitment to multiculturalism means pandering to the religious conventions of Britain's minorities, and the NHS is no exception. Young Muslim women who are not virgins on their wedding day face vilification. I knew a Muslim woman who – a decade ago – paid £1000 to have her hymen "replaced." Nowadays, such an operation costs upward of £4000, if done privately. But at least 24 such operations were carried out on the NHS, paid for by tax-payers, between 2005 and 2006.
Some Muslims exploit their alleged victimhood to force laws to be changed. In September 2008 a female Muslim radiographer at Royal Berkshire Hospital refused to abide by hygiene rules, claiming they discriminated against her. She would not roll up her sleeves, and voluntarily left her job on August 1, 2008, vowing to campaign against the "discriminatory" hygiene policy.
When the new hygiene rules had been issued in January 2008, there were complaints by Muslim medical students in several hospitals.
In January this year, a document was issued called "Religion or Belief: a Practical Guide for the NHS." This tells all NHS bodies that they must display a "multi-faith" calendar so everyone knows the dates of faith events, and advises that staff training should not take place where alcohol is served (for fear of alienating Muslims).
Despite officially making allowances for NHS workers' faiths, apparently for fear of being sued, the NHS still discriminates against Christians. On December 17, 2008, 45-year-old Caroline Petrie, a community nurse from Somerset, was suspended without pay from her job by her NHS employers. She had been visiting an elderly woman at home two days earlier, and had offered to pray for the patient. The patient had mentioned the incident, leading to Petrie's suspension by North Somerset Primary Care Trust.
Caroline Petrie said: "I simply couldn't believe that I have been suspended over this. I knew I hadn't done anything wrong. All I am trying to do is help my patients, many of whom want me to pray for them."
Last month, Petrie was allowed to return to work. The elderly patient had NOT complained, showing that the NHS trust had decided to discriminate against the nurse.
I have had an NHS dietician coming to my home to visit my mother, bringing with her a female nursing trainee wearing a hijab, the Islamic headscarf. If this trainee can flaunt her religion openly, it seems harsh to discipline someone – and deprive them of income – for merely offering to say a prayer.
NHS Discrimination
The elderly, and particularly the elderly with mental health problems, are often treated badly by NHS nurses and doctors. There are 3.5 million elderly British people with mental health problems, stated an independent report in August 2007. Twenty-five percent of those over 65 have depression, while for those over 85, the figure rises to 40%. Twenty percent of those over 80 have dementia. Conditions like depression can be treated, but the condition is rarely recognized, and thus treatment is rarely offered.
The social and health needs of the elderly – irrespective of their mental condition – are generally neglected. A recent report by the Commission for Social Care Inspection has stated that many elderly people are forced to sell their homes or to plunder savings to pay for their care.
300,000 people in Britain suffer Alzheimer’s or similar forms of dementia. This condition is recognized by government as a growing problem, but care for those with dementia is rarely adequate.
In June 1998 while visiting my mother, I noticed she was having problems with memory. Neighbors told me she had been going repeatedly to the same shops to buy items she had already bought. I found a total of £1,500 cash in envelopes secreted around the house. I put the cash into my mother's bank, and took her to a specialist NHS doctor who diagnosed her as having Alzheimer’s-type dementia. I was still living in London then, and there followed the disruption of winding down my work in the city while commuting to the countryside where she lived.
My mother could not continue to live alone and – apart from the odd trip to London to see clients – I lived with her. Aricept was unavailable on the NHS so I would take her on a 24-mile round trip via public transport to a private doctor, who would prescribe the drug. This then cost £96 for a month's supply. £16 of this price was "value added tax."
In October, after I had been looking after my mother for nearly four months, an NHS occupational therapist came to the house. She tried to impress upon me that she knew what was best for my mother. On one of my trips to London, this therapist went into my room with my mother's solicitor and had found £120 that was by my bed. The pair took this money, which was my own. They left a receipt, stating it had been put into my mother's bank account. I began to get a strong dislike for this occupational therapist.
She insisted that my mother have a care worker come to visit her. This care worker did nothing, other than talk at my mother, not with her. I spoke to the occupational therapist about this, but she insisted that it was good to "put things in place," and having a visiting care giver was good for my mother as she had someone to talk to. I questioned the cost of spending £7.50 an hour, "just to have a conversation." The therapist answered: "Your mother can afford it." My dislike of the therapist increased.
My mother had stopped "wandering" and trusted me to cook and wash. In many ways she was more stable, due to the Aricept. The therapist became more intrusive and officious. Once she arrived on the doorstep, with a naive NHS trainee beside her. I said that she did not have an appointment. She answered: "But I made an appointment with your mother." My response was harsh: "But she's got Alzheimer’s." This embarrassed the woman in front of her trainee, and our relationship deteriorated further. On one occasion I sarcastically said: "What happens if I need to go out? Do I lock my mother in the house? Maybe if I had a coal hole I could lock her in there."
A few days later, my mother's official NHS psychiatrist, who had never met either me or my mother, came to the house. He asked if I had ever threatened to “lock my mother in the house." I cussed at him. He then accused me of only wanting my mother's money – though he had no evidence of this. Again, I swore at him. As a result, the NHS psychiatrist and the therapist tried to have me evicted from the house in April 1999.
I wrote letters, copied these to various agencies, and went to the local Member of Parliament's office. The MP's assistant, Andrew Pennington, was very helpful. He listened to my mother, who told him she wanted me to care for her at her home, and argued our case. The fiasco cost my mother £1,200 in legal fees, and the NHS occupational therapist was taken off my mother's case. The psychiatrist happened to be the chairman of the local branch of the Alzheimer's Society, a charity meant to help carers. Because of this, I had no dealings with this charity for the nearly 11 years that I was my mother's caregiver (apart from writing repeatedly to the charity HQ demanding that the psychiatrist resign from his chairmanship – which happened after about three years).
The input of the MP's assistant, combined with my stubbornness, ensured that there were no further NHS attempts to "take control" of my mother and her affairs. The assistant who had been so helpful, would frequently phone me to ask how we were at home. He was murdered on January 28, 2000, as he tried to protect the MP from a lunatic. His fingers were sliced off with a samurai sword and he was impaled six times on the blade. Andrew was later awarded the George Medal for bravery.
Aricept kept most of the worst effects of my mother's Alzheimer’s at bay for two years. She eventually became agitated and then she was prescribed Exelon by the private doctor. She is pictured in August 2001, while she was still able to communicate. She watched 9/11 as it unfolded, and I think this worsened her condition. She would subsequently hear the news of the war in Afghanistan and thought that World War II was repeating itself. She became bladder incontinent in late November. I went to the local doctor's surgery, and told of how she was flooding the bed. I wanted proper incontinence pads. The NHS doctor wrote me a prescription for "Tena Lady" panty-liners. This product was not available on prescription and certainly was not designed for full bladder incontinence. Soon she became bowel incontinent. I cleaned her when necessary, and caregivers arrived on a regular basis.
In 2002, my mother's condition worsened, and we no longer gave her drugs for the condition. She went through a violent period for about six months – threatening to kill caregivers. In April 2003, we began to give her Ebixa, again prescribed by the private doctor. The drug appeared to have a miraculous effect. In June, I took a short holiday, temporarily booking my mother into a care home for a fortnight. When she went in, she could walk and talk. When I came to take her home, she was crippled by a stroke. No one at the care home had noticed this. I vowed to never let her go into a home.
In October 2003, she was fitted with a PEG tube, a tube that went directly into her stomach. She could still eat when spoon fed, but her ability to swallow was inconsistent, putting her at risk of choking. The main problems with my mother's care came from the local doctor's surgery.
From the end of 2003 to November 2008 I was involved in all aspects of my mother's care. My mother had a urethral catheter which frequently blocked, never lasting more than one month (a third of its intended lifetime).
From November 10th, a new care plan was introduced. I was told that if I complained about this, "services could be withdrawn" and my mother could be placed in a home. A solicitor from the local council had made the same comment at one meeting. The same solicitor insisted that I was not being accused of anything but insisted that I follow the care plan. She admitted that my mother had lived far longer than would usually be expected for someone with Alzheimer’s, and did concede that this was due to my input.
I told one meeting in December 2008 that I would not follow parts of the care plan that I did not think were right. The care plan stated that my mother's feed rate was set at 125 ml an hour, even though since 2004 she had never had it higher than 102 ml per hour. Such a high rate, which I refused to comply with, would have harmed my mother. The care plan also stated that I should apply hair-removing chemicals to my mother's face, even though her facial skin was so sensitive that soap could not be applied. I said I would not apply depilatory creams.
I also told the meeting that I was worried that the mild stool softener that the doctor had prescribed was inefficient. She had been given it before and had become immune. I told the meeting that on three occasions my mother had been taken to hospital after throwing up bowel material, which is why I wanted to continue using the senna and fig laxative. A social worker dismissed my concerns, saying: "Throwing up can be caused by anything."
I demanded that the social services give me all the data that they had which mentioned me by name. I sent the request on January 13, 2009. Under Britain's Data Protection Act, I should have received the information within 40 days (by February 22). I am still waiting for it. My mother's new care plan had been introduced under the government's Mental Capacity Act 2005, where NHS and social services can share data.
In January, my mother became constipated, as I had warned. For two weeks she had no bowel movements. In the last of those two weeks, she threw up black material on three occasions. The NHS doctor and the NHS community nurse refused to give her an enema. On January 16th, the NHS community nurse did a pH test upon the black vomit. She confirmed it was bowel material, with a small amount of blood. My mother was taken to hospital.
In the hospital, my mother caught a hospital-based infection (norovirus) and appeared to recover from that. On the day she went into the hospital, she had breathed in (aspirated) some of the black bowel material into her lung. On February 9th, I was talking with a doctor on the ward, saying that my mother was not given any stimulation, and that she needed to be more upright. He said that was a nursing matter. At no stage did he say she was dying. The next night I was called into the hospital as her condition was serious. I spent the entire night with her in a side room on the ward. In the morning, I was told that my mother was on an "end of life" care plan. A nurse showed me the notes. These stated that on Monday, I had been "informed" about the end of life care plan, and that I had understood it. Either the doctor had been lying or incompetent.
On February 12, 2009, aged 82, my mother died after 48 distressing hours of struggling to breathe (above). Her "death rattle" became a gurgling like a faulty washing machine. On her death certificate, the cause of death is given as a): "sepsis", b): "aspiration pneumonia" and c): "stroke". That which I had warned about, which had been ignored, had finally killed her. Sadly, each previous time that my mother visited the NHS hospital, I noticed that she received "second-class" treatment. This hospital had treated Prince Charles after a polo accident and was generally respected. Doctors would always try to force me to sign a "do not resuscitate" order. Other elderly patients on the wards were treated similarly – when a patient asked for a commode, nurses would say "yes" and then walk off, uninterested in something so unexciting as a poor old woman wanting to empty her bladder or bowels. This caused the patients visible distress.
I continue to fight, with the assistance of my Member of Parliament (not a Labour MP, of course) to gain an apology, or at least an explanation, of why my mother was forced onto a care plan that ultimately caused her more harm than good. I have been slandered, and yet no one will admit as much. Evidence that I have been libeled lies in notes, which I am not allowed to see, even though I am legally entitled to them.
The second-class treatment of an elderly patient with dementia is nothing new. Deborah Moggach is a journalist – her mother developed Alzheimer’s and though there were no attempts to vilify her, she noticed how NHS hospitals and staff seemed unable to cope with elderly dementia patients. She wrote: "Funding cuts and staff shortages were part of the problem, but there was a more profound lack of care, too. The nurses' backs were always turned - they were on their mobiles, they were filling out forms, they were talking to each other."
My experiences of the NHS could have been easier if, at the start, I had been less abrasive. At the end I felt that, through NHS and social services' attempts to make me give up caring (possibly to make my mother sell her house and go into a nursing home) I had been cheated. More importantly, my mother who started work as a teacher in 1948, the year the NHS had been started, had been cheated. She had to pay up to the limit for all of her care at home (apart from care which I provided). She had paid her National Insurance stamps since 1948, before those who made decisions about her had even been born. Yet at the end of her life, she did not get a good return from that investment.
It is up to you in America to decide what you want for your future. Ultimately, no matter where it is located, there can never be an ideal "National Health Service" – its care will always be predicated upon the least cost and the greatest convenience for those who provide it.
FamilySecurityMatters.org Contributing Editor Adrian Morgan is a British-based writer and artist who has written for Western Resistance since its inception. He also writes for Spero News. He has previously contributed to various publications, including the Guardian and New Scientist and is a former Fellow of the Royal Anthropological Society. Feedback: editorialdirector@familysecuritymatters.org.
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