Carer's Experience Medical Neglect

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As more and more revelations appeared in the Press and the paper that I read was and is the Sunday Times, I began to realise that the suspicions that I had had about the behaviour of some medical people was possibly not as seemingly unbelievable as at first thought. The idea in my mind at the time of hassling with them was that they were trying to admit her to Geriatrics to prevent house visits.

The author/journalist Melanie Phillips and others, to my mind had written pungent articles about the treatment of the elderly in the London Sunday Times, and in December 99 I penned this following letter to Melanie Phillips along with a copy of the Age Concern letter. She acknowledged it with sympathy for my experiences, and later articles in the Sunday Times show that Ms. Phillips, I am sure, has experienced the same as myself and too many other people.

M/S Melanie Phillips,
The Sunday Times,
London.

13 December 1999.

Dear M/S Phillips,

Please find enclosed, a copy of a letter which I wrote to Age Concern England last July against the treatment of the elderly in the UK. I have also enclosed copies of their and Age Concern Scotland responses.

I have wholeheartedly agreed with your articles recently about the abominable manner which the NHS uses in its approach to the elderly and which it also applies to carers of the elderly. Age Concern Scotland has my permission to give my name to journalists who should enquire regarding anyone who is prepared to go on record and talk of their experiences. I decided to write to you on that basis and also on the basis of other critical articles on the NHS in the Sunday Times.

With hindsight, I can only draw the conclusion that my Mother's death, if not planned, was at least hoped for and that the NHS both in and outside of hospital was instrumental in that end result. I suspect that there is a deliberate policy of non-communication on a constructive basis with an elderly patient's carer as I experienced. On virtually every occasion, there was no recognition that I was the expert on my Mother's personality and knew her in a way that no Doctor or Nurse could ever have equalled. They created within me a feeling that no attention was going to be given to my views regarding my Mother's care needs and my worries concerning suggested equipment within the home setting. I have little doubt that this is a plan which allows them to then decree that offered assistance to the carer is being rejected and then used as an excuse to withdraw/withhold the attention which is the best needed in the domestic setting. They left me, and I am sure, my Mother, with the feeling that we were just a nuisance to them, for all that there were some who seemed to recognise my work and actually said that I was doing a good job.

From September 97, their treatment of us worsened. A District Nursing Sister caused me a lot of stress, and I suspect, was the instigator of the Case Conference. She suggested their attending once a week to bedbath after it had been stopped, and then found fault with the washing aids I had on hand, and was the same woman who I had clashed with over the blood sample fiasco.

She didn't like sponges - they got packed up with soap. There was more than one sponge, numerous face cloths, moist wipes and J-cloths;
She didn't like moist wipes since they had perfume in them. They were changed to wipes with no perfume, alcohol or lanolin and dermatologically tested but still were unacceptable;
She didn't like the triangular wooden frame which I had considered buying for pillows/upright supportive sitting position, since the patient could slide off to the side. Hospital beds have similar devices;
She didn't like the pillows - they were inside PVC protective covers within the pillowslips as was the mattress. Hospital beds are similar.

She appeared determined to find fault with me and the NHS Trust Nursing Office was not interested either, and I already was aware from experience of GPs' indifference.

I am not surprised at recent press articles which contain accusations of NHS staff imposing euthanasia and/or murdering elderly patients through various means. Baroness Miller was lucky in that a Doctor asked her about resuscitation of her 91 year old Mother in the event of a heart attack.

When my Mother was admitted on the 12th March 1998, the Casualty Consultant decreed in medical notes that in the event of cardiac arrest, there was no CPR to be given. Nothing was said to me. Nor was any reference made to the high blood glucose state called Hyperosmolar Non-Ketotic Diabetic Coma. The only reason for admission given to me was Bronchopneumonia in Right Lung, which was cleared by the 16th March. Nurses' notes state a Junior House Officer was to speak to me regarding resuscitation on 16th but never said anything during our meeting nor referred to dying or their negative results from senses' tests. I confirmed to him that aggressive treatment was required. This meeting was when the first mention of the high blood glucose was made.

My positive received response from my Mother was ignored by a staff Nurse as unimportant, and I discovered after death had not been reported to Doctors. They continually classed her as unresponsive. Their Nurses' and Doctors' notes record my wish for aggressive active management but no further communication came from them as to her deterioration, which they knew of, until 5-10 minutes before she died. Their most inhumane action was to assume that my Mother was aware of nothing. They took from my Mother the most important Right of the Dying, and that is the right not to die alone. She may have got comfort from my presence, the touch of my hand or my voice, but all of that was never considered.

On arriving at the ward 10 minutes after death, a Nurse breezed past me and in an off-hand manner said "Your Mums gone - 10 minutes ago". When I called after her "Was it a heart attack?", the equally off-hand answer was "No, it wasn't a heart attack"; over her shoulder.

With regard to my complaints starting from January 1999 until the received letter of Conclusion of Local Resolution on 30th August, there has been constant delays; trivialisation of my points regarding their failure to keep to their own nursing plan; the delay/failure in Ward Staff bringing to Doctor's attention the rising blood glucose levels and my Mother's response to my voice; the non-use of a respirator which they stated afterwards would have helped her; their lack of consultation with me and overall negativity. As to the above Nurse's callousness and their lack of consultations there has only been insincere apologies. It seems Nurse "Nobody" spoke to me.

Doctors equal callousness showed in that final letter where the Casualty Consultant is reported as having told me that her long-term survival was unlikely and no strenuous efforts were going to be made to keep her alive. He thought he had referred to the unsuccessful possible outcome of cardiac arrest, and how I appeared to know my Mother was dying which his conversation with me confirmed.

This claimed conversation never took place and is fabrication - just one of the anomalies in that letter. It is as if the medical profession when probed/criticised as I have been doing to try and answer the questions in my mind, sets out to cause one even more emotional distress. The 7 month period of Local Resolution produced dissatisfaction and contradictory letters. I requested an Independent Review but as I expected it was refused. The deciding Convener is part of the Trust which is £2 million in the red. The last resort is a complaint on my behalf forwarded by Glasgow Health Council to the Health Ombudsman in Edinburgh and has yet to be answered.

The Sunday Times should start an on-going "Insight" series based on those who are prepared to talk about their traumatic experiences in detail. Until doctors are legally forced to consult relatives/carers, they will continue to be arrogantly dismissive of peoples' feelings and increasingly will look upon us as those "sacks of spare parts", whose lives are to be dispensed with as they see fit.

All the above and also that enclosed in the Age Concern letter, plus other experiences which I have not detailed, and there are quite a few, have left a deep antipathy and contempt towards the medical profession. Complainers have no independent body to fight their corner which NHS trusts are legally compelled to take account of. Legal action is a non-starter for virtually most people. Our only recourse appears to be pressure via the Press.

Yours Sincerely,
Iain R. Stewart.

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

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