There are many cases regarding questionable practice within healthcare in all countries and fields. Some of these cases are unpublished by main news but may be found on blogs or web sites , put there by people in desperation. Some of these cases have “festered” for 20 plus years . People react in different ways – some may have the inner strength to continue to battle , others may choose not to battle believing it cannot be won, or they are unable to carry on. Whatever the reaction, all cases , especially of unexpected death , affect the whole family and individuals for the remainder of their lives.
Some may chose to campaign as a group, or alone. Some may select a relevant field within their career , such as law, to represent or to assist others. Some people combine to form resource and support networks for others.
Campaigning groups in the UK include, amongst others, Patients Association, Cure the NHS, Patients First, Compassion in Care, and phsothefacts . The Patients Association has existed for 50 years and published several reports . CuretheNHS campaign lead to the development of the Francis Report for example. Phsothefacts are contributing towards changes in policy .Patients First protects whistleblowers, and campaigns to change policies. Links to some of these organisations to others with vested interests may be questionable because it would determine their action.
Some relatives battle as individuals. One of the earliest cases is that of Robbie Powell. “In 1990, a ten year old boy called Robert Powell [Robbie] lost his life in hospital. “Within months, the father (Will Powell) began to suspect that somebody was tampering with his son’s medical records. He filed more complaints, and spent 15 years fighting for the truth [currently 24 years]. Now, finally, he has it – and he was right” (Davies 2006). The family had not been informed that Addisons disease was suspected and tests had not been done (nursebloginternational 2014). If this situation had occurred in the USA, Will Powell could have instigated an injunction to stop medical records being “altered”, called a Conspiracy to Commit Fraud.
The care of Robert Bird’s son (2006) also involved a failure to undertake a test, because an appropriate staff member was unavailable; the test was an endoscopy. As a consequence, Robert’s son, Garry, aged 22, lost 90% of his bowel, and other errors followed. Records again were missing (phsothetruestory.com 2013).This case is described by the pressure group phsothefacts, which consists of many members with similar cases. In both cases, as in all , relatives had a horrific time trying to raise the issues and ensure full investigatons and action were undertaken. Both Will Powell and Robert Bird’s cases involve negligence – the failure to undertake tests and occurrence of missing records, plus lack of communication between professionals.
An earlier case, in 1979, concerned the death of Helenor Bye, age 12, after she was involved in a drugs trial without her parents consent and given epilim for epilepsy that she did not have. Her parents were lied to by staff and informed that Helenor was still alive and she was not, whilst her organs were removed, so they could not undertake full examination (Dr. Rima). This case again involved “missing records”; Helenor’s parents were not given access to the records until many years later. Other factors included staff lying, as in other cases
Will Powell fought for a Duty of Candour which , known as ‘Robbie’s Law’, commenced in 2014 and requires staff and care providers to be honest to patients. This law requires NHS or FT hospitals in England to tell the truth to patients and relatives if there is significant harm to the patient. Debates will remain concerning what is significant harm – is this physical or psychological? Also, care by healthcare assistants may cause harm in some cases. It is, however, a move in the right direction (qualityofnursingcare.webs.com 2014) . There are two versions of this duty held by CQC and regulatory bodies ; “Regulation 5: Fit and proper persons: directors and Regulation 20: Duty of candour come into force for NHS bodies in November 2014. ‘NHS bodies’ means NHS trusts, NHS foundation trusts and special health authorities. The fit and proper persons requirement outlines what providers should do to make clear that directors are responsible for the overall quality and safety of care. The duty of candour explains what they should do to make sure they are open and honest with people when something goes wrong with their care and treatment” (cqc.org.uk 2014) .
All UK Healthcare regulators (2014) joint statement: “Every healthcare professional must be open and honest with patients when something goes wrong with their treatment or care which causes, or has the potential to cause, harm or distress”. http://www.nmc-uk.org/media/Latest-news/Regulators-pledge-to-do-more-to-put-openness-and-honesty-at-heart-of-healthcare/ 12.10 14 including GMC and NMC
A major underlying issue is that of missing records. Why are missing tax records prosecuted more often and easily than missing healthcare records ? -http://www.hmrc.gov.uk/record-keeping/. An accountant who destroyed evidence would be considered to be a criminal. . They in power have the ability to masquerade mistakes.
Loss of records should incur a very hefty fine for negligence. In the USA, it is mandatory for any person witnessing abuse to report it, but legislation differs between the 50 states (Nightingale 2014). However, stern action is taken, such as hefty fines and imprisonment if a person fails to do this, for example -http://www.newyorknursinghomeabuselawyerblog.com/ . This web site gives several examples of nurses who falsified records “Many cases of complaint, both in America and the UK, are hindered by claims that records have gone missing. Should not the loss of medical records attract a very hefty fine? – perhaps to an amount of 30% of the cost of an award which may have been granted if records had not been ‘lost’” (Nightingale 2014).
Describing the NHS ombudsman as a “diversionary tactic” Nightingale (2014) very clearly describes the situation “The Ombudsman (more accurate if called Ambushman) will close a case if the smallest of details are not submitted, and if the slightest inference is given that legal action is being considered, which, of course, could mean the Trust paying compensation”. “Trusts have enormouse influence within the GMC and NMC” (ibid.), and “no regulatory bodies are truly independent “ (Dimon 2014).” The GMC, NMC, RCN, and CQC are all complicit in covering up the abject failure of the ‘marketisation’ of the NHS, that is, failure to patients, not to their ‘fingers-in-the-pie’ political masters” (Nightingale 2014). Other groups, such as the RCN, may rule by infiltrating other committees, even if they seemingly oppose RCN aims (Nightingale 2014).
One must remember also the vast number of staff, including nurses, care assistants, doctors and radiographers, who have raised issues and are termed “whistleblowers,” and as a consequence have lost their job . For example Sharmila Chowdbury a radiographer, lists and describes many cases on her web site regarding the NHS.
Some opt to campaign alone, to run blogs, or form campaigning groups. Their plight may be regarded as a separate issue to that of relatives; whilst the case may still involve missing records, it also involves employment issues.
Other relevant factors which may hinder campaigning, may include group adherence, brought about by leadership that seeks it’s own self-interest. . This is illustrated within all spheres – including that of campaigning groups from where people may be excluded if they do not adhere to “group” opinions. The nature of poor care or good care is, however, an individual matter when considering such aspects as attitudes, personal aims, or culture (Dimon 2014).
Yet along the way, there may be expressions of sheer frustration, anger, and disbelief.Lack of responses to communication does not help. Responses may be needed from MPs, or journalists, for example. If this does not happen somebody may ask “Is there anybody there?”, or more rudely, “Are you going to reply?” Some may well shout and appear to lack appreciation of certain points. Surely this is understandable? This is not about making allowances for people; it all comes down to listening. If people were heard in the first place cases would not erupt.
Dimon C (2014) The Myth Of Independence nursebloginternaional.wordpress.com
Duty of Candour information ack A Dignified Revolution.
DrRima ( nd ) Helenor Bye- Dead at 12, Murdered By The State http://drrimatruthreports.com/helenor-bye-murdered-by-the-national-health-service/
Nightingale L (2014) Regulatory Sham nursebloginternational.wordpress.com
Nightingale L (2013) http://lenin2u.wordpress.com/2013/12/21/18/
Robert Bird’s Nightmare (2013) http://phsothetruestory.com/2013/08/25/robert-birds-nightmare/
With acknowledgements to Will Powell
Author: anon. 16.12.14
“Comrades!” cried Squealer, making little nervous skips, “a most terrible thing has been discovered. Snowball has sold himself to Frederick of Pinchfield Farm, who is even now plotting to attack us and take our farm away from us! Snowball is to act as his guide when the attack begins. But there is worse than that. We had thought that Snowball’s rebellion was caused simply by his vanity and ambition. But we were wrong, comrades. Do you know what the real reason was? Snowball was in league with Jones from the very start! He was Jones’s secret agent all the time. It has all been proved by documents which he left behind him and which we have only just discovered. To my mind this explains a great deal, comrades. Did we not see for ourselves how he attempted–fortunately without success–to get us defeated and destroyed at the Battle of the Cowshed?” George Orwell Animal Farm