Carer's Experience Medical Neglect

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The following letter I penned in response to Age Concern's campaign against the treatment of elderly people in the UK. It was sent to their London address (Age Concern, England) who thanked me for the painstaking effort that I had put into it. They also forwarded it to Age Concern, Scotland, who did at a later date give my name with my permission to a Press source, but the "Scotland on Sunday" newspaper only did a general article on the subject of the UK's treatment of its elderly.

Age Concern Scotland, in its reply to me said that:-

"It seems clear, from your account, that, although your mother may have eventually died as a result of her ill-health anyway, the way in which she was treated may well have hastened her death, and certainly caused her to suffer in her final months in a way that she should not have had to. It is hard to come to any conclusion other than that your mother was treated this way because of her age, and that your interventions were dismissed because you were seen as a troublemaker."

Age Concern,
Astral House,
London.

29 July 1999.

Dear Age Concern,

Thank you for your information pack regarding Older People. I trust that you will not be bored by the length of this letter. It is necessarily long to cover various incidents over a number of years up to Mother's death on 17th March 1998, aged 89, and since I was her carer, the worry and emotional turmoil caused to myself as well as my Mother on account of the attitudes of GPs, Hospital Doctors and Nursing Staff. This was with regard to on-going very debilitating symptoms, which were said to be related to her diverticular disease, but also in connection with her other illnesses and general care needed. I believe her age was a relevant factor, and to a sufferer, off-hand attitudes and no real interest causes huge emotional distress.

My Mother's on-going illnesses were Chronic Bronchitis, moderate Osteoporosis, Pernicious Anaemia, numerous "funny turns" which were classed as either Vaso-Vagal Attacks or Transient Ischaemic Attacks, a small heart attack in Jan 93, Diverticular Disease and latterly she was "said" to have the early stages of Vascular Dementia.

In contrast to your information regarding some cases, my Mother was given clot-busting drug therapy in Jan 93 and put on thrombolytic aspirin from that date, when she was age 84. The wound healed well. In August/September 93, she was admitted and Pernicious Anaemia was found and on-going treatment commenced. Simultaneously, the debilitating symptoms of nausea, dull ache and an abdominal churning sensation were present, but nothing was found. It seemingly was not cardiac related. The Consultant told me that she did not know what it was but was sure that it was not life threatening. Even on the discharge day it was bothering her, but no real interest was noted. The apparent bowel related problem was of long standing but only "wind" in both directions and various tests revealed only a hiatus hernia, for which medication was prescribed some years before.

The extremely distressing symptoms continued. She was checked by a GP using a speculum since there was also the sensation of something about to come down out of her front passage. Nothing was detected. She was scanned in Dec 93 by Gynaecology for anything untoward in the reproductive organs but again nothing was detected. Over the festive season, my Mother was literally slumped in a chair and bent double when this started at random at its peak and then took ages to fade away, and I eventually took her to the Southern General Hospital, Glasgow and requested investigations. She was admitted for about 3 weeks and after various tests, the Consultant could only conclude that she seemed to have a very sensitive Central Nervous System. I was told that her Diverticular Disease was unchanged from previously, and if it was the cause of these symptoms, no reason was known as to why. It was the first time we knew of her Diverticular Disease. The problem remained a mystery. She was re-admitted in Oct 94 and 3 colon polyps were noted. The largest one was removed. They were all benign. My hopes that that might help proved false.

Over a substantial period, I frequently called GPs, but on various occasions they were distinctly unhelpful. We were on the receiving end of comments such as:-

"Oh, you are having fun" - (said with a laugh);
"It is something your Mother just has to live with";
"I think your Mother is an over anxious woman" - (she was a very placid calm person and that upset her when she was suffering);
"Oh, what is it this time?" - (said by a GP in an irritable exasperated tone of voice).

The continuing physical/emotional drag that the symptoms plus the above comments were having upon my Mother was never seriously noted, nor the emotional/worry factor caused to me and any possible reflected stress.

From the Pernicious Anaemia diagnosis, District Nursing began visiting to chairbath and administer B12 injections. Our favourite "Sister" kept placing it before GPs and an anti-depressant was tried but to no avail. She achieved referrals to a Consultant Gastro-Intestinal Surgeon and between Nov 94 and Oct 95 we attended 5 Outpatients visits. The complete Alimentary Canal was examined for any tumours but none were found. When the Consultant said that Irritable Bowel Syndrome was also possible, I asked if there was an IBS clinic in the hospital. The answer was no. The visits were basically non-productive and then we were told that there was no need to renew appointments. About 2 years later I discovered that there was and had been an IBS clinic in Gastro-Intestinal outpatients for years. The Doctors obviously did not care.

GPs tried numerous anti-spasmodic and anti-nausea drugs but to no distinct or long term advantage. They did know about the IBS clinic as I discovered and I am sure that the Consultant's reports must have referred to IBS, but, as usual, there is little imparting of information to the carer from GPs. They effectively threw in the towel. I was left to try on my own, with anti-spasmodics bought over the counter; Hofels ginger capsules since ginger was proved to be efficacious in relieving post-operative nausea at a major London teaching hospital; peppermint water and a small sherry at times but it all proved "pot-luck". While accepting that major surgery was not a serious option, there was still no attempt on any Doctor's part to investigate further as to any other cause of these distressing symptoms nor to alleviate by trying other drugs.

When she was later admitted for a Urinary Tract Infection (UTI) I raised the issue again but it received no attention. Unfortunately, in March 97, our favourite "Sister" went on Maternity leave and their "Trust" was stopping them visiting for bathing reasons alone and it was not considered necessary for my Mother to have twice weekly visits on health reasons. This was another example of my Mother's age group having services withdrawn and it angered her greatly. I took over bathing duties. Nursing visits became once a month. She was admitted to hospital shortly after with a UTI and was discharged with another UTI through ending up sitting in faeces. There were no call buttons for patients and her repeated shouting for a nurse was to no effect. A few days before, I had had to toilet my Mother in the ward when no nurses were to be seen. This was in Geriatric Re-Habilitation and it is possible that there is still no call buttons since it seemingly was the norm. On her discharge I phoned the surgery and requested once a week Nursing visits to keep a check on urine with test strips. A doctor told me that there were not enough nurses and anyway the strips were not very accurate. I got no assistance.

In July 97, she had another UTI admission with accompanying confusion and while there, a suspected stroke which remained unproven. The symptoms seen on the ward and described to me were as the "Diverticular" problem and/or TIA but no in-depth investigation of the former occurred. A brain CT scan showed signs of mini-strokes and a Consultant told me that there were signs of dementia but insufficient to warrant a place in a Psycho-Geriatric ward. In Spring 96, the UTI admission with its confusion caused the Geriatric Consultant to CT scan the brain which showed, as I was told, brain shrinkage and this was the norm. That confusion cleared with UTI treatment.

After a referral request via Surgery for a Community Psychiatric Nurse contact proved fruitless, I discovered the Glasgow hospital which controlled the CPNs and they had no trace of the referral. Details were taken and we were visited by the local hospital Psychiatrist and a CPN. The Psychiatrist told me of the IBS clinic since the symptoms were active at that time. They considered my Mother probably had very early Vascular Dementia and visits were to be monthly to start. I achieved a referral to the IBS clinic and in Dec 97, the Consultant prescribed a different drug, namely Prepulsid, which seemed to give a greater degree of relief from those symptoms. One wonders why GPs could not have done the same, other than that they did not care enough for an elderly person's emotional state of health.

In Sept 97, I called District Nursing for advice on that which was a haematoma. The Sister said that it was necessary for a doctor to take a blood sample for analysis, yet she could have taken it herself. They both came the next day and the doctor, without any examination, was intent on hospital admission for a blood sample which was totally unnecessary. My Mother was only 5 weeks out from the July UTI and then she was accusing me of being in league with doctors and nurses against her and was very confused, upset and aggressive. Another "unnecessary" admission so soon would have caused her more emotional distress. I also voiced my concern over her experience of sitting in faeces and no call buttons, but neither of them was prepared to listen to my concerns. At this point my patience snapped and I told the GP bluntly that he was doing this because he could not be bothered with house calls. I also knew that on a previous occasion, he had apparently tried to have my Mother admitted to Geriatrics on a permanent basis, but he denied this. He referred to legal devices if I were to stand in the way of the ambulance. He asked if I had any objections to a hospital consultant visiting which I agreed readily to. The consultant visited, examined and left, saying he would be in touch. He had obviously noted various bruises which were a regular occurrence caused by her very fine skin and capillary breakages "at the drop of a hat". No blood was taken.

He reported the matter to Social Work, who told me that all alarm bells were ringing with this report of an 88 year old woman with bruises, cared for by her 53 year old unmarried son, and that all abuse including sexual had to be considered. After talking to me at home, the Social Worker said that she was talking to an intelligent articulate person. This, I am sure, was reported to cause me trouble because I had not touched the forelock to one of the "Gods on pedestals brigade", and was questioning their actions. I have little doubt that it was to save both GPs and nurses from having to house visit. They effectively caused my anger and I feel that it had an emotional effect upon my Mum - she possibly thinking that she was being a nuisance in some way, and read my anger/irritation as me being angry with her.

Two days later, the same GP visited again, but still took no blood sample or carried out checks. Shortly after, my Mum developed a chest infection; a 5 day course of antibiotics was ineffective and there was admission for what proved to be double pneumonia, but this was cleared in 12 days. They then decided that a Case Conference was to be held around the need for a hospital bed at home which I had previously indicated a dislike of some years before, since my Mum would possibly have had accidents with it, in getting to her commode on her own. No carer can be awake 24 hours.

At the Case Conference, and other discussions, there was reference to:-

my signing a disclaimer to allow discharge if I refused to accept their ideas regarding "the bed". They said that regular visits for bathing needed an adjustable hospital type bed. Also, a hospital bed was necessary for an air mattress to be tied in place, yet the air mattress she was on in hospital was not tied in place. The air mattress she eventually received at home, on her own bed, never moved at all when held in place by the sheet. They never considered any difficulties a hospital bed could have caused to me, working on my own;

my Mother needed three visits a day in the future. This was a knee-jerk overkill on account of their guilt, since I pointed out past neglect and previous refusal to my "one a week" request. I welcomed one a day, but three would have prevented me leaving the house;

the existence of an impasse, but it was in their minds only. The home situation from my viewpoint as the carer of an elderly person was never really considered;

use of a hoist in moving her between bed/commode/chair/wheelchair and the necessary handling was never seen as a risk factor, on my own, with highly possible further bruising. My Mum's legs were at this point non-load bearing. She also disliked hoists;

my not coping, yet I had been left to cope.

The Consultant eventually relented and my Mum was discharged. Nursing visits resumed at twice a week but all skin care was left to me, which was just a sign of umbrage because I had differed with them. I am certain the consultant was given a black picture of me by District Nursing and possibly other machinations, and points made by me changed his views to some extent.

All this caused her to be held in Geriatric longer than necessary and this she hated. It showed when one night, she said twice, in a sad voice, "Nobody wants me", and I could not convince her otherwise. It deeply pained me and it still does. I walked home with tears in my eyes. I had pointed out to doctors how they were affecting her emotional state but it was not taken seriously. I asked her later if she thought she was in Geriatrics to be dumped permanently and she said yes. I re-assured her that I would never do that to her and it seemed to be accepted, but still later she said "Nobody wants me".

This pressure put upon us was detrimental to my Mother's overall health. It left me with a feeling that if I requested help then we were going to be messed around by them in some way. The CPN visits changed to call if needed and I was left on the hot seat once again to try to make decisions on my own. I had to live with my Mother's unpredictable moods/lethargy since no Doctor or Nurse ever took an interest in the stated dementia - they simply did not care. The nursing visits eventually went back to one a week - all part of their abandoning us because I had shown myself to be prepared to question and differ.

Shortly before her last illness, she had a chest infection, the District Sister thinking she sounded a bit moist. A GP prescribed antibiotics, a second GP said after the 5 day course that all crackling was gone and advised the bronchodilators 4 times a day. Both GPs should have known her history and taken better action. The nursing visit on the 11th March 98 was only a check on my skincare. I suspect they knew she was poorly but did little. On 12th March I called an ambulance and she was admitted with bronchopneumonia, right lung. There were other factors which I only discovered later when told and upon getting her medical records for this period, after her death. There was a lack of communication on the hospital's part and I experienced their negative approach which is part of my official complaint. This has been going from the beginning of the year and is still in progress. They are still not addressing the issues and the anomalies in their own nurses' and doctors' notes. The official final definitive complaint of 29th March last has my feeling that they could have fought for her but just decided to let her go. There are further queries raised by the various letters and their file notes, with perpetual delays.

With regard to the Age Concern Campaign, I, about three weeks ago, phoned Age Concern(Scotland) in Edinburgh, to enquire if the problems I am experiencing in this are of relevance. The staff member said she would enquire and return my call. Although I did not ask, on their own initiative they phoned the Medical Director's office at the hospital to ask about progress, which was appreciated. I have also but am still awaiting results, even with outside organisations phoning.

Overall, the medical profession does not really care for the elderly nor communicate with their carers. They hope, I suspect like the politicians, that they expire so that they do not have to be bothered with them too much. The elderly are not economically viable. Even at this length, my letter still does not cover all incidents of waiting, delays, indifference and lack of respect.

I am,
Yours Sincerely,
Iain R. Stewart.

Iain R. Stewart, Ex-Carer
excarex@excarex.com

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