Carer's Experience Medical Neglect

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Page modified July 2012.

At the date (Spring 2006) of modification of Excarex, the position of carers within this United Kingdom remained similar to that which I describe in Articles 1 and 2. The disgraceful treatment of them continued and they still saved the tax payer thousands of millions of pounds. If they were to state to society that they could not continue to provide the generally unrecognised care that they do, then society would not know that which had hit it. The taxation that would be necessary for the state to provide the same care would be huge and failure to implement such taxation would leave the uncared for to die and rot in their homes. A truly horrific scenario!!!!!!

November 2004

Dear Readers,

Allow me to introduce myself. My name is Iain Robertson Stewart, an Ex-Carer living in Glasgow, Scotland. For a good number of years, I was my Mother's carer until her death in March 1998. My experiences are detailed in this web site. Rather than an all-singing/dancing site with fancy effects, it is just solid reading material, but it expresses that which I experienced as a carer. I have seen so many sites with enough graphics, that if I were a Texas cowboy, I would be starting a round-up and putting them in a corral, or failing that, getting the wagons in a circle. Heaven only knows what the graphics would be firing at me - probably web page code, HTML, XML, JavaScript etc.

In 2002, I completed a basic course in web design, to add to my Scottish Vocational Qualifications Level 2 in Word, Excel and Access plus the European Computer Driving Licence and I decided to use my carer experiences as the subject for my personal web site project. I have no doubt that it says something of worth or it would not have been accepted for indexing by the search engines, directories and metacrawlers which have done so and more often than not have placed it high in the returns, which I put down to the fact that the site is in keeping with the basic philosophy of the original web. The web was created for academics in Universities, Colleges and research institutes to make their knowledge available to all. Its reason for being is the propagation of knowledge, experiences and understanding. The site is also a reflection of similar case histories of the trials that carers suffer in the UK and no doubt elsewhere. I hope that my contributed experiences can be of some use to present carers by helping them to realise that their backs need not be against the wall.

For a few years prior to my Mother's death I was a member of Carers National Association (Carers UK) and also Alzheimer Scotland for a year. In various articles in those Charities magazines, which I have kept, I read of carers' similar troubles and I recall one notable article by Sir John Harvey-Jones (ex ICI Chairman) in the CNA magazine of November 1995, which describes the carers' situation admirably, and the same problems that Sir John spoke of, still exist today in the UK.

The article referred to the on-going problems for those who shoulder the onerous responsibility of caring and then find themselves cut off from support sources, respite time and a true appreciation of the carers' position. The supposed professionals, as I have said in my site, are so often not in touch with the reality of the carer's world. The GP doctor world looks to institutions, which over the past few years are increasingly closing, and a fair percentage of those homes for the elderly are where residents get effectively treated inhumanely; and exploited. This adds greatly to carers' worries. Regarding respite care, there is no legal right to it and it can be withdrawn easily at any time. It is rarely, I am sure, provided on the premise that it must be the best care suited to the needs of the carer/cared for.

Numerous carer families spend decades fighting the systems of the benefits agency, social services and other state bodies to little avail. The benefits agency employs thousands of doctors only to check doctors' (GPs) opinions on claimants, which adds again to carer worries, since the system is hedged around by restrictions and petty insane rules. The state cannot even operate those correctly. The state's incompetence and bungling does cause heartbreak to caring families, who end up suffering at the hands of bureaucrats and politicians, and then having to pay in hard cash for those officials' incompetence.

A prime example was reported in the London Sunday Times of 21 April 2002. The Welsh journalist John Humphrys, who had a weekly column, wrote the article. He is the journalist who I refer to on my site's Media page. The case involved the Perkins family of South Wales who had taken into their family an adopted daughter, Naomi. The child was born with microcephalus, cerebral palsy and epilepsy. To be able to cope with such caring responsibilities needed respite care at times and due to the Department of Social Security and Benefit system incompetence, the Perkins were wrongly advised with regard to the rules governing disability allowance payments. There are the insane linking rules governing the time spent by the cared for person in respite care and out of respite care, and the number of periods of respite added together over a period. Due to wrong advice the Perkins had breached the linking rules.

The Perkins had taken the trouble to ensure that they were doing everything by the rules but upon checking at one point were told to return their disability living allowance book and not to cash any more vouchers. They were then told that they had to repay the respite care costs for the past 10 years totalling 2,104.10 pence. The Perkins family was by no means rich. The powers that be can line their own pockets with perks and give themselves loads of largesse while treating carers despicably. In the UK, carers save the taxpayers thousands of millions of pounds yearly, yet the thanks they get is to be treated callously. The above case is not an isolated one. John Humphrys only heard of it because neighbours of the Perkins family, furious at the heartless injustice shown, had written to him. There is little doubt that this is repeated throughout this island.

To return to doctors' failings, which I have experienced, I know that the good ones are there. I have met doctors during my time as a carer who were not the slightest bit peeved at my knowing some medical terms, and others who said that it was nice to have someone who could tell them things about the patient's illnesses. In my Mother's GP case notes, there is a letter from a Hospital Consultant to the Surgery referring to our meeting with him, stating that he believed he had answered our questions. He also considered that there had been a problem created due to the lack of proper communication on the part of medical people on our previous Outpatient visits. It made a pleasant change from the patronising of others. They made me feel that I should have sent a telegram before the meeting requiring them to take bowel control medication beforehand since I had no wish to be drowned in a flood of doctoral diarrhoea upon me, a non-medic, asking a medical question. Gee, what a way to shuffle off the mortal coil!

To all present carers, I say do not take no for an answer, and you must set aside the mentality of that particular type of medical professional who considers that you have no right to be knowledgeable on medical matters. As a carer, you must be so, and you must always remember that that knowledge is empowering to you in the position that you hold.

The answers to any questions that you are bound to have will be found on the web, if you are having trouble in getting them from normal surgery/hospital channels and sites such as and are just two of them. On my site's links page, I have provided a droplist of relevant sites of search engines, health and carer organisations.

In closing this short article, let me remind you of some words written by a carer, one Isobel Allan (carer of Susan). They were published in Scotland's Carers (Scottish arm of Carers National Association (now Carers UK)) in the magazine of August 1997. I quote a few only:-

People may say to you, "You will get your reward in heaven". Remember, you're a nice person - don't hit them (they're trying to help).
People may say to you, "Don't worry about the housework, the house won't fall down". Remember, you're a nice person - hit them (they need help!).
Ensure when you are talking to yourself that you find time to listen - you are listening to an important person!

I would also add that you are talking/listening to a better class of person.

Above all, try to keep smiling.

My kindest regards,
Iain R. Stewart.

ADDENDUM - July 2012.
The website is no longer online, but the ongoing activities of its creator Dr. Rita Pal can be read on the websites:-

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Iain R. Stewart, Ex-Carer

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