Page modified July 2012.
With the increasing newspaper revelations and the belief growing in me that the manner in which my Mother had been neglected was possibly not just due to the rambling inefficiency of a huge organisation such as the NHS, I read my back copies of the Carers magazine and on the strength of various articles decided to detail my experiences as one article requested. The following letter is that which I sent to the Press Officer of The Carers National Association.
Carers National Association,
14th August, 2000
Dear M/S ....,
Please find enclosed the letters that I sent to Age Concern relevant the elderly, and to Melanie Phillips, Sunday Times, in response to her various articles on the NHS and its treatment of the elderly and on the medical profession's attitudes towards patients generally. I have also enclosed a selection of copies of only some of my Mother's Case Records which, to me, are an indication of the mentality which is far too prevalent among medical professionals and which closed ranks against me, thus marginalising my position. Although I have not read CNA's publication "Ignored and Invisible?" by Melanie Henwood, I am sure the answer to the question was YES.
When I was a member of CNA, I noted the various articles in the magazine showing the numerous problems that carers were experiencing in trying to deal with supposed professionals, and there were some occasions when I felt that there was a distinct lack of communication/co-ordination between them and I am sure Mum and I were certainly disadvantaged by it. I drew the conclusion that we didn't need their hassle.
Around the time (1994/95) when I had Occupational Therapy visit the house with regard to appliances to help after my Mother had broken her right fibula, it was suggested that a powered bath chair be installed. The District Nursing was chair bathing her twice a week using a dining room chair, apparently without problem, but I informed the O.T. (Social Work Field) of the Surgery name address, and then nothing further transpired. It seemed as if the carer was supposed to take the professionals by the arm, introduce them to each other and then have to do their thinking for them. When the usual Nursing Sister went on Maternity leave in March 1997, she suggested the powered bath chair to which I agreed. She also suggested a wheelchair but my Mum was able to get up and about using her Zimmer, and I didn't like the idea of her getting no exercise at all. It was at this time that I was told the District Nursing Service could no longer bath her and that there was no reason for twice weekly visits. The Sister referred to in the letters was the one who told me in September 1997 that I wasn't coping and accused me of having rejected the offers of our usual Nursing Sister, prior to her going on leave. The only items that I was not too happy about were the hospital bed and a riser armchair since my Mother was doing OK, and it is a small flat I am in and accidents can happen with those chairs and beds. I had readily agreed to her being given a commode, a raised toilet seat and for Social Work to fit wall-bars on either side of the toilet seat. She was also given a foot stool. In contrast to my being falsely accused of rejecting help, I had said on many an occasion to the Community Nurses that if they needed any assistance in moving my Mother, then I was there and they were not to risk their backs. My offer was not taken up. I am sure that the idea of a hospital bed was primarily for their backs and yet my Mother was usually up out of bed and in a fireside chair when they called twice weekly to chairbath her in the bathroom. The hospital bed was totally unnecessary at that time plus my Mum was used to a kingside bed settee, not a single bed.
My remaining impression of those professionals such as Community Nursing, GPs, Hospital Doctors and Social Work is that they see the "domestic carer/cared for" situation only from the narrow blinkered viewpoint of their specific discipline and either cannot or will not recognise that the carer has to view it from all angles. They also see people as items that have to be organised such as to fit in to their specific profession's policy niches.
In turning to the copies of GP Case Record letters, I shall point out the lack of communication from Doctors to me; their incapacity or unwillingness to listen to what I was able to tell them from experience and their lack of interest in finding out what exactly it was that was causing such distress to my Mother. I also believe a degree of medical incompetence was present, and on this, I will elaborate more with regard to her Type 2 Diabetes which we were not officially told about. I hope that my details can be of some help to other carers, and in keeping with CNA magazines that I have, requesting carers to give their stories of contacts with "professional" bodies, will help other carers to possibly realise where those external organisations are deliberately working against the carer/cared for and therefore act as a warning.
Letters of 11th/30th August 1995 (Carnat 1).
11th:- In this, the reference is made to my having stated that "the wrong antibiotics were given", which is totally false. This probably was my having told the Consultant of a previous Locum in the early morning hours who gave my Mother an antibiotic and shortly after she began vomiting. On the re-visit, the Locum said it could be a rare reaction to a constituent active ingredient and changed the antibiotic.
Again, I am put in the position of having declared my Mum's "churning" abdomen sensation as Irritable Bowel Syndrome. I had never heard the expression before the Gastro-Intestinal Surgeon first used it at an Outpatient visit previously, and I told the Consultant at this home visit. The sensation, numbness and other symptoms were those which no medic ever really had an answer for. He unjustifiably describes her as manipulative, which she most certainly was not, but often depressed due to this on-going problem. I am blamed for compounding the issue, just because I asked for the issue to be addressed properly; and I was classed as intense. There were no problems at home. There really should be no new diagnosis of Irritable Bowel much beyond the age of 40. It first appears in GP records at age 79. The letter ends with a greater concern for their protecting themselves against our claims of their ignoring "sufferings".
30th:-This visit, by a GP, I at the time took to be, as he said, just since he was passing he thought he would drop in. Obviously, there was an ulterior motive. He happened to call when my Mum was having some respite from the symptoms. Like all of the Doctors, it was never thought wise to discuss their joint thoughts with me, and the letter ends with possible future machinations. He also asked at a later date; if it wouldn't be better for my Mother to be in a home.
Letter of 19th March 1996 (Carnat 2).
The symptoms continued. This letter is one of Dr(GP!)'s attacks on my character. As various Consultants do in other letters where they blamed me; so does this GP for the unrelenting symptoms. By his reckoning, it would seem that I would have been more acceptable to the Medical Scene if I had just let them forget about my Mother and had not asked about clinical findings. The domestic anxiety was caused by the symptoms which knocked my Mum "for six", and also depressed me since I couldn't get any real positive responses from Doctors. My contacting of others (Ninewells Hospital, Dundee; Central Middlesex Hospital, London and Drugs Developments, Ninewells) was action to try and get information since I felt that I wasn't getting much constructive thinking locally.
Letter of 31st October 1996 (Carnat 3).
Again, I am blamed for the discomfort in insisting there was a problem. He doubts the existence of nausea and equally downplays the "churning". In a letter of November 1994, he wonders if she is troubled by a hiatus hernia, yet it was already in her notes, having been discovered in 1989, and here again, he should have queried why she had the medication "Losec". He said to me at the outpatients visit that he would have more time to talk at the next visit, which proved not to be the case, on the 5th December 1996.
Letter of 5th December 1996.
No progress, and the Gastro-Intestinal Department had thrown in the towel.
Letters of 16th Dec 1996/12th Feb 1997 (Carnat 4).
16th Dec:- Refers to the Urinary Tract Infections, nausea and churning; obviously "Dr(GP!)'s" comments about me, although this GP did recognise my concern about her light-headed attacks. He was a short term visiting Doctor who I was sorry to see leave the surgery.
12th Feb:- The Head of DME sees no need to make derogatory remarks about myself. My Mother was seen at day Hospital for a few visits. No letter about results is in the notes. The churning remained.
Letter of 21st April, 1997 (Carnat 5).
This admission was when she went in with a UTI, and was discharged with another UTI through sitting in faeces with no call buttons or nurses. Three days before, I had had to take her to the toilet because no Nurses were in the ward. While my Mother was pressing me to get her home, since she felt that they were hanging onto her, the Doctors told me that they had to be sure that a Social Work team link was in place. My Mum was eventually released. The drug Flomax for urine retention caused her to flood the place and she took an instant aversion to it, and when she was home, it was causing such stress between us with my sometimes hoodwinking her into taking Flomax, that I consulted the surgery. The GP was surprised that she had been given Flomax as it is for men with prostate trouble. He suggested one capsule every second day but sounded uninterested on the phone. Due to the hassle, I eventually stopped forcing them upon her.
Its maker, Yamanouchi Pharma, West Byfleet, Surrey, informed me that they do not have a database of research information on the use of Flomax by women - it is for men as above, but they knew that some doctors try its use.
As regards Social Work, we never heard from them. The only home circumstances that needed attention were those related to the ongoing symptoms.
Letter of 26th June, 1997 (Carnat 6).
In this, another Consultant Geriatrician displays, like most medical staff, the usual crass ignorance of what it is like to be a carer. As explained to the Doctor, the incontinence usually prevented her settling for the night until the wee small hours and I left her to sleep on so as to get a proper sleep period and I matched my sleeping to her own. This was explained, but on reading, it is as if it has been said to create a false image. The Flomax reduction on surgery advice was explained to him.
My Mother would have thought I was trying to get rid of her if Nursing Homes had been mentioned and she did not like day centres. The day Hospital, previously attended for only a short time, could have been beneficial, but Mum said she didn't like it as she was just left, after a few checks, to sit unattended.
The supposed professionals continued to refuse to recognise the failure on their part with regard to the physical symptoms and the distress it caused to us. The incompetent buck-passing went on.
Letter of 1st August, 1997 (Carnat 7).
Again, Dr(GP!) abuses my character and states that my request for one visit a week is unrealistic. I did not mention skin care/bathing as I knew it had been stopped. In this phone call, I had asked for the Physiotherapist and Community Psychiatric referrals. I was not asking for anything else.
Having been used to chair bathing my Mum since the Spring, I pointed out to that "Sister" in August that I was managing when she offered to put in one visit on a Sunday just to freshen her up.
The freshen up was just basic.
She made no reference to Dr(GP!)'s letter. Then the criticisms started.
Letter of 16th September 1997 (Carnat 8).
This one is full of nonsenses, lies and imaginings. The GP to whom it is addressed is the one who had tried to have my Mum admitted to DME permanently in September 1996, behind my back - just to get her off the surgeries doorstep and who I had clashed with over the "blood sample" admission. He had obviously told the Consultant that my Mother had agreed to admission, which is not the truth and this Consultant compounds it by repeating the lies in stating that I had refused the admission which was not the real case. Surgery notes contain more lies in stating that I had said that I would stand in the way of the ambulance.
The Consultant continues in his character damaging comments about my Mum and myself. The false facts continue:- my Mother was not shouting, although having been handled by the doctor in his examination, she eventually told him to go away as he was making a nuisance of himself. She was not bedfast as she had got out of her bed and moved about independently the day before. The steristripped tear and haematoma were on the left arm.
The deliberate blacking of my character was also continuing against me, originating from District Nursing in the phone call referred to. As regards "standing close", more often than not I was not in the room when they were giving her that "freshen up", nor when they gave her her B12 injection in the hip. I was in the room as and when necessary and when I had to talk about various aspects of my Mother's care. As regards "locking doors", no internal doors in the flat are lockable - I always closed over the outer of the two front doors since this district is a very bad area now and I had been threatened with violence at the front door over the necessity of using Police to control criminally harassing neighbours through the use of "Noise" as a weapon. No Nurse was ever locked in by me at anytime and could have left freely as they wished. This phone call, by, I am sure, the Nursing Sister involved in the previous letter, was of no beneficial use whatsoever. I can only attribute it to sheer badness or within this person a dislike of males in any nursing capacity. During the following admission from 30th September - 28th October 1997, I was told that she was not considered as someone who would work as part of a team, by nurses in DME Rehabilitation who also told me that they did not like her.
The Consultant continues with his fantasies about my Mum flinging her arms about which she never did and then refers to my denying all knowledge of the cause of bruising. The above DME nurses told me that they had the same problem where patients' relatives ask how this or that bruise occurred and the nurse said "We feel awful - we just do not know how they happen".
In his conclusion, with its implications regarding me, and possibly an attempt to force her into a Nursing Home, there is the possibility in that idea of the sweeping her off the doorstep of the NHS. There is also the clear admission of the incompetence of the numerous professionals in the lack of co-ordination and neglect at Primary Care level, which was totally their fault. Fortunately, the Social Worker who visited did not believe that I was abusing my Mother in any way.
Letter of 4th November, 1997 (Carnat 9).
The Consultant in this case appears to accept Primary Care Nursing's perceptions and overlooks the facts pointed out by me regarding the neglect of one visit a month, just to give the B12 injection and no other real interest shown. He, like his colleague of the 16th September 1997 letter, contributes to the distorted facts regarding myself inasmuch that he informs the GP Practice Head that I had stated reservations about daily visits. I had made it clear that I welcomed daily visits. The hospital Social Worker visited for a while, but was eventually required to pass it on to Community Social Work, from whom I heard nothing. I signed, as my Mum's carer, a form authorising the GP Practice to give information to Social Work relevant to her need of Community Care, and then heard no more. On getting the GP Records I found that there was an intention to have her put into a home by Hospital Social Work.
There was no considerable disagreement with district nursing nor with Social Work, the latter group being one with which I had had little contact, having found not much help regarding information on assessment and dementia programmes. I consider Care in the Community as an obscenity. I can remember one occasion between 1st August - 30th September 1997 when "that" Nursing Sister and one of her colleagues stood on opposite sides of my Mum's bed and talked about her as if she wasn't there. I was slowly coming to the boil, but Mum beat me to it by a split second when she uncharacteristically snapped at them - "Just talk about me as if I wasn't here". I then snapped and ordered them both out of the room. I often wonder if the treatment received and the lies about me were revenge acts. After my Mum's discharge on 28th October 1997, I happily accepted a wheelchair; air mattress; pressure relieving seat cushion; a fleece; transfer sling and endless nylon transfer band etc. There was a definite umbrage towards me by both Primary Care staff and some Hospital Staff.
The next few letters relate to the stated dementia.
Letter of 1st/28th August 1997 (Carnat 10).
In Dr(GP!)'s letter he again disparages my character and in his history of illnesses gives wrong facts. The Psychiatrists reply shows the 4 out of 10 score, which was due to those "symptoms". Later visits by the CPN in early 1998 produced 16 out of 22 on one occasion. The Psychiatrist notes the symptoms of a depressive nature and on this basis, I wonder if she did have much dementia, or if it was pseudo-dementia which produces similar symptoms but comes about through depression. Unfortunately, Doctors didn't communicate with me which is their usual behaviour.
Letter of 18th December 1997 (Carnat 11).
On this occasion, the symptoms were in operation, and she was not asleep as implied. She wouldn't respond to the CPN, but I knew the position, and how to get a response. Unfortunately, it was a bit bad tempered. The CPN does not give a proper report.
Letter of 9th September 1997 (Carnat 12).
This refers to a visit at the house by Social Work, which I had organised to get information about bathing. This was around the time of District Nursing stopping it, but home helps were only being introduced to this new duty and my impression was that it was in a state of change over disorganisation, so I let it go and took over the bathing of my Mum. As to any contact by Social Work in response to the letter's suggestions, there was none. When the CPN discharged Mum from his caseload, I was not accepting of it, but more resigned to the situation and used to the wastrel attitude of "wishy-washy" professionals. I am certain that numerous carers get very exasperated with the feeling of having to take professionals by the scruff of the neck and then having to try forcing them to march in step with the carer. Alzheimer Scotland had visited at my request and was helpful when I had found anger at the situation suddenly flaring up in me and I was told that I should not feel guilt over it.
In Spring 1995, I applied on behalf of my Mother for her Attendance Allowance and the GP who completed the last page of the application form was Dr(GP!). On reading his entries, I saw he had written Diabetes, and I thought he had made a mistake, and having other things on my mind, I did not query it. My understanding of Diabetes was that it had to be treated somehow and she never had any, nor was her hospital menu card ever specially marked. Probably if I had queried it, I would have been told that it was mild diabetes and further derogatory conclusions drawn up about me. It was one of the above Hospital Consultants who notified the surgery of it in 1989, and to whom I had raised the issue of the distressing abdominal symptoms but no action was taken. Having read about Diabetes since Mum's death, it seems that there is a common ignorance/incompetence among Doctors which classes Type 2 as mild. In point of fact, there is no such thing as mild Diabetes and Type 2 is more dangerous in that it is slow in its onslaught and insidious, and people slide into its particular coma state over a period of days. The Consultants involved in the last days of my Mum's life are quoted in the 7 months of Local Resolution Stage One correspondence as saying that prior to this Hyperosmolar State, my Mum was not a diabetic. When she was discharged after the Case Conference, she was given a diet based on high protein/high calorie and the foods suggested were increased use of fried foods and foods such as sugar; glucose; high fat and sugar intake on top of 2 Entera a day. Since she would not have survived on just 2 Entera, and I had further problems with the Surgery/District Nursing over those, I was using meal replacements such as Complan and Build-Up to give my Mum protein, carbohydrates, fats, vitamins and minerals. I still don't know whether I was doing the right thing but had checked with the hospital's Nutrition Department which did not contradict me. It makes one wonder about the possible incompetent lack of correlation between hospital departments and about whether recommended diets are correct.
There is one aspect of Diabetes that I discovered through reading and it is that an estimated 60-70% of Diabetes cases get nerve damage through the metabolic changes of diabetes. It appears in two forms, peripheral and autonomic and produces a range of symptoms, covering that which my Mother experienced. It is a thing which appears mysteriously and disappears similarly. The autonomic version which appears to affect Type 2 produces symptoms such as:-
Repeated Urinary Tract Infections;
A sense of abdominal bloatedness;
These are due to the diabetic effect on the nerves which line the walls of the stomach, intestines, urethra and blood vessels, and affects about 20%. I find it difficult to draw a firm conclusion as to whether I was confronting sheer medical incompetence; a despicable indifference towards an elderly person's sufferings both physically and emotionally or a combination of the two. Of course, I find myself with the conclusion that both my Mother's and my emotional states of health were used as weapons against us, and that the medical profession will so often rather do that than communicate and accept that carers do sit on a hot seat which medical people rarely have any experience of. They, as you can see from the above, feel threatened by a carer doing what a carer has to do, and that is amass information about the ailments of the cared-for, to help in making decisions outside of normal surgery hours.
I, recalling our phone conversation, appreciate that you cannot promise an immediate interest on the part of any specific press organisation, but now that you have a detailed report, you have my permission to show it all to any journalist who may have more than a passing interest in the caring issue, especially when the carer is left as I am, with the feeling that their relative's deterioration in physical and mental health and eventual death may have been subtly orchestrated through deliberate feet dragging and with-holding of proper medical and nursing/social care attention.
I trust that the above is of some value,
Iain R. Stewart.
Regarding the above letter, I never received any acknowledgement from the recipient and phoned to check if it had been received at all. I was informed that it had been received but I remember being left with the impression that it was not of any great moment, although nothing should be read into that in the sense of being a criticism of CNA. My Article 2 (sub-page to Home) details their achievements on behalf of carers. It is possible that my phone call happened at a busy time, and also my letter could have been just another example to add to the long list of the experiences of negligence imposed upon carers and those that they care for within a sick society.
At this date of July 2012 this UK is still sick.
I have no doubts that folk would say MUCH MORE SICK.
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