Carer's Experience Medical Neglect

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The following letter is that which, in December 2010, I sent as an e-mail to a chap in England who had come across Excarex. He had just lost his partner and having read my story, he e-mailed me, and spoke about how he could relate to many of the things that I had said eg:-

carers not being kept in the picture;
as people get older they are not as important in the eyes of the NHS;
how he feels that he will always blame himself for not being more assertive and insistent with the doctors and that the guilt will never go away;
and his feeling as if he was being a nuisance.

In nearly three years to the above time, December 2010, doctors only visited his partner on 5 occasions and only reviewed her medication once because he insisted.

December 2010

Dear J R,

Thank you for your email, in which there is nothing that surprises me. I appreciate how you are feeling at the moment when it is all still so raw and you have my sympathies. I thought of phoning you but sure as fate I probably would have forgotten to mention some points or relevant links that might be of some use to you in pursuing some complaint with the NHS. When my Mum died I was left with a void that I thought that I was going to be sucked into since the reason for my day had gone. Since my creation of Excarex, I have received a number of responses like your Email, and from people outside of the UK, and the writers have expressed just the same feelings as you have. They felt as if they were the one in the wrong, so to speak, and reading of someone having experienced the same was a factor, I am sure, that helped them to stop blaming themselves to the same extent.

For all that it is coming up for 13 years since my Mum died, I still look back at times, and blame myself for not being as bitchy and as forceful as I could possibly have been, but wonder that if I had been, would they have ganged up on me even more than I felt at times that some of them were doing. If some doctors want to gang up on you for having the temerity to read about medical matters to try to acquire some knowledge about the medical problems regarding your own health or the person you are caring for, or to ask questions and seemingly query their actions then they will do so and in that regard they are extremely unprofessional!!!! There are so many in the medical profession who give me the impression that they have adopted the attitude of "Victoriana Doctor Bobs" who will patronisingly dispense knowledge from aloft their ivory tower. In some cases, but thankfully not all, they appear scared stiff that you might discover just how much they don't know. I can remember occasions at Casualty (Accident and Emergency) when Doctors commented that it was nice to have someone like me who could tell them details about the patient, since until they had received my Mother's records from the holding company external to the hospital, they were to an extent working in the dark. The good Doctors are there but unfortunately there remain those who display the glaring lack of communication skills. I feel sure that some of the medical profession don't even know how to talk to each other; never mind as to how to talk to patients and their relatives.

I also look back and in retrospect can see the failings of mine and berate myself for those. It appears to be the way that our minds work, and those who deal with that subject called death and the bereaved do tell those who have lost a loved one that they should try not to be too hard on themselves. It is all part and parcel of bereavement and the main emotion associated with it which is anger.

We are all so helpless in the face of death and doctors are no different from the rest of us. I do not believe that there is any real part of a doctor's training that deals with death and all of its ramifications. There must be many a time when those who have lost a loved one will ask to speak to the consultant and will leave the meeting thinking of the consultant as a cold callous item but not realising that the doctor is also in her or his own way equally grieving in that they have lost another patient.

The medical profession needs to learn the wisdom expressed in the words of the poets and the words of William Shakespeare spring to mind. In one of his plays the words are:-

"A problem shared is a problem halved"

although for that wisdom to be effective in the above settings takes communication skills.

I, like so many people, read numerous books on bereavement and probably the best one that I read is titled:-

"You'll get over it - The rage of bereavement"
Author - Virginia Ironside.

It is the opposite to so many which seem so full of empty platitudes.

Please do not apologise for going on nor are you a grumpy old man. The troubles that you have experienced are known to a lot of people, who will unquestionably sympathise with you having known similarly in the past, and are still knowing and continually having to try to deal with. At many times since my Mum's death I turn the episodes that I experienced over and over in my mind but I cannot turn the clock back. I wonder and consider that if whatever was said or done had been otherwise would things have been better in some regards. We live life as it happens and in retrospect may understand actions, thoughts and things said, but life does not give us the luxury to change it and correct the errors that we decide we have previously made.

You say that you are putting a letter together to send to NHS Doncaster. In Doncaster you are not that far away from Staffordshire where Mid Staffs NHS Hospital Foundation Trust has been under examination, although distance is irrelevant. It was/is detailed on the website:-

I am not sure if it is off line at the moment since it appears that there are certain powers that many a person would consider as evil who are trying to silence whistleblowers and the right to free speech. It is just another example of that same mentality which would have covered up the killings of Shipman if he had been part of an NHS GP practice.

It is probably the same attitude that at the moment is trying to silence the following website:-

This website is at present off line due to an action against it by apparently some unknown body acting through a legal outfit although its owner has stated that it shall be back online when some points are seen to. The legal outfit has been reminded of the right to freedom of speech or expression and the right to register complaints under Article 10 of the European Convention on Human Rights.

Its owner has detailed on the site the circumstances of the death of her father in a hospital ward from terminal cancer where her father died in agony clutching the sheets and his nearest and dearest had to contact their GP to get action in the hospital after his family had been told that they would have to wait for attention for their father when the doctors next did their rounds; and that took place in a specialist cancer unit where there was no question that their father was dying and a mentality was displayed that I can only consider as despicable and totally lacking in humanity. The site has given detailed reports as to the lack of pain controlling morphine and anomalies surrounding that aspect of their father's treatment of his terminal cancer.

The site is on my Links page along with others at the top of the page and they are all worthy of study. Other sites are:-

I can't quite remember the one site of those which welcomes approaches from people and they will gladly give assistance in the making of a complaint against the NHS. In stating that, I would remind you of my words on my Ombudsman page and these sites will no doubt show and tell you of the same stonewalling and waffle put out to hope to wear you down and put you off. You will also find comments by various people regarding the failings, as seen by them, of the Ombudsman and they're looking upon the Ombudsman Offices as another enemy that is against the complainer. I do not know exactly the article of mine that you read, since you didn't state the page of Excarex that you had read, but on my Links page there is also a selection of relevant links in the dropdown at the bottom.

I hope that you find assistance from the above information and please e-mail me as to how you get on.

My regards,

Iain R. Stewart.

Since the above letter, came back online and then offline. It was caused to be offline, for the first time, due to the actions of the NMC (Nursing Medical Council) acting through their legal body, Field Fisher Waterhouse, which appears to be the same solicitors who act for the GMC (General Medical Council). Not too long afterwards it was back online, and then on the second occasion of its removal, the cause was unknown to its owner. Although for all that it is not online as before, its owner's views cannot be and are not being silenced. Those bodies who think that truth can be suppressed are deluded, for it will always eventually rear up and triumph. Its opponents are those who prevaricate, then have to continue in their evasive behaviour to try to conceal their previous deviousness, and so often finish by totally discrediting themselves and thus are only worthy of being held in utter contempt. It seems that the matter will be in dispute for some time yet. It is worthwhile to view the ongoing thrust of the points being argued by Mrs. Janet Brooks and family regarding the site, via the 'tomsanguish' link on Excarex Links page that leads to Janet Brooks on the Freedom of Information site "". Other sites of a similar vein are the first six links at the top of my Links page and they detail the disgraceful treatment of some patients, carers and their loved ones. The sub-page to Links is "Links Info" where more information is available. If any of these investigative sites referred to should not be available, then it is possible that they have been forced off the web by questionable actions of those who are trying to keep their dubious standards under wraps.

You can also visit the Health Ombudsman site for England at the following address:-
to read the Ombudsman PDF Report of ten cases investigated by the Health Service Ombudsman for England, Ann Abraham, which she intends laying before Parliament.

This PDF document, which can be read and downloaded from the above site does not make pleasant reading.
It can also be downloaded from the following site:-
ISBN: 9780102971026

As the Ombudsman states in the document, it shows the failure of the NHS to respond to the needs of older people in a caring and compassionate manner and also the lack of basic standards of care. In contrast to that stated intention, there are the opposite firm, unshakeable views of others who are very critical of the Health Ombudsman Office/NHS Trusts, having been on the receiving end of witnessing their loved ones being maltreated. Upon taking the matter to the Health Ombudsman, they have then found that in their opinion the complaint was not being taken seriously but instead glossed over and trivialised. There appears to be the attitude that covers up wanton neglect and evidence seemingly exists that criminality may also be getting swept under the carpet. Among the politicians and bureaucrats, there appears to be the mindset that is part and parcel of this immorality, although there are some MEPs and MPs who apparently receive the same run-around when they try to assist their constituents in their hassles with the NHS Complaints Procedure and the General and Nursing Medical Councils (GMC and NMC). Some politicians are on record as saying that the NHS Complaints procedure exists only to create an endless round of bulwarks to wear down the complainer. As to whether the above action will produce the necessary steps for some of the medical profession to reflect and alter their ways and for some politicians to change similarly is a moot point. There are numerous revealing medical forums on the web and I have numerous PDFs/files, that detail the disgraceful failures of supposed professionals and the calling into question of the impartiality of the Health Service Ombudsman.

Having stated this, I have sympathy for the good Doctors and Nurses who want to be able to practise the skills that they were trained to practise in caring for the patients, but are being prevented from doing so. The stumbling block in their path is the plethora of managers who appear to be only interested in the "stupid targets concept" conceived by that sub-life section of those called politicians. From the information available on the web, there are people who look upon them as irrelevancies who squander NHS funds and time thinking up fancy titles for themselves in their overpaid and irrelevant jobs; and in doing so are impedancies in the path of the real people who are the medics trained to help the sick. Excess bureaucrats must be cleared out of the NHS and sent off to market trivia, for all the use that they are to a caring efficient Health service. The running of the NHS is about the patient's health, and the emotions of them and their relatives, which must NEVER be looked upon as commodities.

For all that the disreputable cult of "New Labour" brought back Matrons to the NHS, it seems that they couldn't be identified with the real Matrons of the past. The facts are in the book titled "Matron Knows Best: The True Story Of A 1960s NHS Nurse" written by Nurse Joan Woodcock, and was published by Headline Review in 2011. To yourself, the reader, you possibly will find an extract from the book online on the MailOnline website for Sunday, 6 February 2011, under the category of Femail. The hyperlink reference for that page is:-

Even though some state the probably/obviously true facts that the past was not always "sweetness and light", the following points still remain crucially important.


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Iain R. Stewart, Ex-Carer


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