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 Care Campaign For The Vulnerable

Care Campaign for the Vulnerable is learning of the pressures faced by conscientious led Care Providers striving to offer a caring and safe environment to both service users and staff. Safety monitoring is proving to be a invaluable care assist tool - bringing a more open and transparent culture into care homes as well as saving valuable resources within the care home sector and the NHS

Case Studies

''My mum wanted to die at home - she was denied that right...''

Added on 27th June 2022

On 1st January 2018, my mother began with the symptoms of Motor Neurone Disease, resulting in a tracheostomy tube, ventilator and oxygen, loss of speech, a peg feeding tube and eventual paralysis. Communication was possible via eye movement. My mother had a strong will to live, in the knowledge that I would be a constant companion and carer.

A hospital admission on 27 December 2018 resulted in a tracheostomy operation on 2 January 2019. NHS Continuing Healthcare Funding was awarded on 13 February 2019 and a 'Fast Track' discharge meeting was arranged. The Leeds CCG revoked the 'Fast Track' discharge and my mother remained in hospital, medically fit for discharge for a further 7 months, with a life-limiting condition.

The CCG arranged a hospital discharge 24 hours care package with a complex care agency (1-1 carers were trained on the ward). The discharge date of 17 June 2019 was cancelled by the CCG on 14 June 2019. The CCG allegedly threatened my mother with admission into a Nursing Home and we refused to sign a CCG contract stating that I would not provide care for my mother within our home. I provided care within the hospital and have 18 years of experience caring for my sister, who had a tracheostomy and required a ventilator (following a brain haemorrhage). The agency employed carer's on a zero-hour contract and we both refused to sign. I made a formal complaint via Alec Shelbrooke MP.

''My mother's rights were stripped from her. She wanted to die at home and was denied that right... I won't give up fighting for justice for her being failed...' Daughter.

At short notice, the Ward Clerk cancelled the Ambulance and crew and the Clinical Nurse Specialist. I cancelled the visits from our GP, District Nurses, Baywater Oxygen, CUCS, the Fire Service and Chemist delivery. A ceiling tracking hoist had been installed and bespoke disability equipment had been delivered.

The CCG arranged a hospital discharge on 14 October 2019 with a nursing agency (1-1 nurse and 1-1 carer trained on the ward). This 24-hour care package failed within the first week due to insufficient carers and no preparation for contingency by the CCG.

On 22 October 2019, I was instructed to sign a CCG contingency plan dated 23 October 2019. I was allegedly threatened with my mother's return to hospital (within 2 hours) and then a transfer into a Nursing Home if I refused to sign. In the absence of a nurse or carer, or both, I accepted a maximum of 168 hours per week of nursing care plus 168 hours of health care, relinquishing the private agency of all responsibility. I was not permitted the time to seek legal advice and a request for a copy of the contingency plan was refused. The CCG requested to know who owned our property. (I had Power of Attorney of Property and Finance.)

An agency nurse resigned on the first day due to health and safety concerns. A CCG Occupational Therapist had cancelled the suitable mattress ordered by the Hospital Occupational Therapist. My mother's visible and painful ankle, feet and toe injuries were documented by our GP. A complaint resulted in a new mattress in 4 days. My mother's MND had advanced during this time, due to both pain and stress.

There was no oxygen prescription, preventing the agency nurses from delivering oxygen requirements. The agency nurses were not trained in the care of a cuffed tracheostomy tube.

On 29 October the CCG approved the request of the agency nurse assessor to telephone an emergency ambulance, in order to return my mother to the hospital. Our GP intervened and the ambulance crew left. I contacted Alec Shelbrooke MP requesting an investigation into the misuse of public funds, to no avail.

The CCG arranged for further nursing agencies to provide care. Shifts were cancelled (in my name and without my knowledge). A request to the CCG to provide and train complex trained carers was refused. I made a verbal complaint of alleged harassment and bullying by the CCG Head of Continuing Care to an Administration Assistant in Continuing Care and requested that my wording be documented. This resulted in the Head of Continuing Care accompanying a CCG Social Worker to our home in order to assess my mother's mental capacity. I refused to allow my mother to be assessed alone. I was requested to leave the room within our private home and refused. The Head of Continuing Care held many meetings within our home, with as little as 15 minutes' notice, no minutes of the meetings were taken. The complaint was neither acknowledged nor addressed.

On 21 December 2019 my mother was suddenly (and against her wishes) returned to the Hospital A & E Department. The CCG had not arranged a direct transfer to the ward and yet the medical team were made aware of my mother's admission days earlier. My mother spent 12 hours distressed and uncomfortable, adjacent to a lady who was hallucinating. My mother had agreed not to be readmitted to the hospital from home, in order to die at home.

I had received a document from the agency with a termination date of 9 January 2019 and I had approached other private agencies, in order to keep my mother at home. All arrangements for my mother's (final) Christmas and New Year at home, were abruptly cancelled.

A ward Consultant in Respiratory Medicine informed me that my mother did not have mental capacity (I did not agree and I had Power of Attorney for Health and Welfare). The date of 4 February 2020 had been decided as the date of my mother's death, within our home (via removal of the ventilator).

I was advised that an intervention on my part would result in the immediate return of my mother to the hospital. I intended to intervene and considered whether I would contact the police.

I wrote to the Prime Minister, Health Secretary, GMC, BMA Medical Ethics Committee, NHS England and CEO of the Teaching NHS Hospital. The decision was revoked. I had expected support from someone, given the life and death decision taken on behalf of a vulnerable person, with full mental capacity, as documented on 3 March 2020.

Then on 4 February, 2020 three Consultants held a Best Interest Meeting on the ward. I was deemed the Decision Maker. No Minute Taker was appointed and I did not receive minutes from this meeting. The unanimous decision was to return my mother home with an NHS-funded, safe, package of care. The CCG was informed and advised to provide a care package. The CCG ignored the decision of this meeting.

In March a 'Fast Track' discharge was offered by a Consultant in Respiratory Medicine and my mother and I accepted. I contacted the Bradford-based agency which would provide 4 visits per day for 45 minutes each (for toileting requirements) as arranged by the CCG. I contacted all the persons who provided care to my mother within the community. I also contacted 3 agencies to self-fund a safe care package to commence on the date of discharge (agreed to by a Consultant in Respiratory Medicine). I awaited a discharge date. The CCG instructed me to sign a legal document stating that I would never leave our property.
(I was once again refused a Hospital Discharge Coordinator or Social Worker as the CCG were involved.) The offer of a 'Fast Track' discharge was revoked by the CCG.

I had proof of savings to pay for private carers who were willing to train on the ward from January 2020. I had also obtained availability and pricing for a private ambulance. A nursing agency requested a video conference with the ward nursing management, to be held on 27 March 2020 in order to return my mother home on 30 March 2020. This request was ignored by the ward management and the CCG.

My mother was offered the option of death by the Consultants on the hospital ward, but repeatedly refused and was informed that there would be no discharge home and the remainder of my mother's life would be spent on the ward. I remained with my mother at all times.

A letter from the Head of Continuing Care dated 6 March 2020 states 'because my mother has refused for the complex care provider to be trained'. This is not true and this accusation has been used before by the CCG, a ward Sister provided me with a signed letter counteracting this statement.

A second letter written by the Head of Continuing Care and sent to the ward had not been recorded within the NHS computer system. A Senior Nurse requested to document the letter and I refused, in the knowledge that this letter was not legitimate. The letter read by the ward Nurses and Health Care Assistants and ward Clerks was lost on the ward. The Head of Continuing Care has no recollection of the letter.

I contacted Alec Shelbrooke MP who in turn communicated with the CEO of the CCG. A letter from the CEO dated 30 March 2020 states 'we have offered a range of safe alternatives, but at this time they have all been rejected'. (I am not aware of any safe alternatives.).
'Also that my mum was now being discharged under new COVID-19 Legislation which suspends choice of care setting and is being assessed by a care home with a view to being discharged to their care' My mother and I waited Tuesday and Wednesday and my mother was discharged (against her wishes) on Thursday 2 April 2020.

I requested to pay for my mother's nursing home fees during a conversation with the care home manager, but my offer was refused as the CCG Clinical Service Manager always provided the requested fees and there was a long-standing relationship between the two of them.

A ward Sister administered morphine without my mother's permission or knowledge and I was unable to rouse my mother from sleep on the morning of discharge. I had refused to leave my mother but a Consultant, Sister, Charge Nurse, Nurse and Health Care Assistants all awaited the ambulance crew's arrival. I was informed that I would not be accompanying my mother to the care home and instructed not to follow the ambulance.

My mother awoke in the Nursing Home in the company of strangers wearing masks. My mother's oxygen saturation levels plummeted repeatedly to a dangerous level and I was not informed until several days later, by an agency carer. My mother's oxygen requirement of 0.75 litres per minute could not be accommodated on the oxygen concentrator and was therefore reduced to 0.5 litres. My mother could not tolerate this reduction in oxygen.

The CCG would not inform me of the name of the agencies providing care to my mother within the Nursing Home. I contacted every agency in Leeds and provided my details. (Three agencies provided care within less than a month.) The Director of the first agency telephoned me on the morning of admission and this was the agency that had offered to provide nursing care within our home from 30 March 2020. The Director informed me that a Nurse would assess my mother's care that day and complete a care assessment in order to return my mother home. This agency (the only one appointed with a nurse) informed me that they were dismissed after 4 days with no explanation. The Manager of the second agency also informed me that they were dismissed with no explanation

The Manager had applied for a DoLS for my mother on the date of admission. My private details were forwarded without my permission or knowledge as I was named as the 'relevant person representative'. I requested a complaint form and an update on my mother's response to antibiotics, my written requests were ignored by the Home Manager.

I reported a suspected chest infection and stroke. The care home did not pick up on this. The CCG CEO stated 'This lady needs 24 hours a daycare by staff trained in ventilator care'. A CCG 'Needs Assessment and Support Plan' document states that my mother requires a 1-1 day and night nurse within the Nursing Home. A Nursing Home document requests a 1-1 complex care trained carer 24 hours. My mother was provided with a domiciliary trained 1-1 carer and a Nurse providing 1-16 or 1-32 care, dependant on staff shortages.

My mother had a tracheostomy that has the possibility of dislodging and was ventilator dependant. It was unsafe to place a domiciliary trained carer in this position. It would not be acceptable in the hospital or community. It was, however, inexpensive and I was willing to pay for my mother's life.

Within the first week of admission, the CCG closed my mother's case with no safeguarding, to be revisited following the coronavirus pandemic. I appointed a further Solicitor specialising in Community Care Law and the CCG reopened my mother's case.

On 27 April 2020, a second Best Interest Meeting was held, via video conferencing. I have deemed the Decision Maker again. The minutes were not provided, therefore not enabling a unanimous agreement on their legitimacy. I requested and received a copy of the minutes of the BIM meeting on 27 August 2020. These minutes do not correspond with the minutes taken by my appointed Solicitor. I have requested the true minutes from the Consultant in Palliative Medicine who held the meeting. The minutes included the CCG Clinical Service Manager stating 'Julie's behaviour was the problem' and also objected to me approaching all providers, plus the statement that our 'GP was not happy to support'. I contacted our GP who informed me that this was not true and would be illegal, as he had a sign erected outside the surgery, stating new patients welcome.

The medical procedure of changing the tracheostomy tube was conducted the day before my mother's death, by the care home Nurse. The emergency-size tracheostomy tube replaced the larger-sized tube. This went undetected until I collected my mother's body with the Funeral Directors. Two other emergency-size tubes had been ordered and were kept within a drawer with inner tracheostomy tubes (removed from their sterile, sealed wrapping). The Nursing Home have no records of the date my mother's urinary catheter was changed from the hospital catheter (infection control). My mother had infections within the nursing home.

My mother had agreed to a DNAR and not to be returned to the hospital from our own home and not from a nursing home. This decision was given as an excuse by a GP not to return my mother to the A & E Hospital Department, where I intended to escort my mother home in a private ambulance, with a self-funded, safe care package in place. The Clinical Nurse Specialist had provided written permission that my mother could retain both ventilators at home.

I refused to accept the registration of my mother's death, due to concerns relating to the neglect of my mother within the Nursing Home. This resulted in a conversation with a Coroner's Officer. A letter outlining my concerns, led to the Senior Coroner's decision, to hold an inquest.

My mother was transferred from the hospital into a nursing home under the government COVID 19 legislation which suspends choice of care.

I am alarmed and appalled at the indifference that is shown to the most vulnerable members of our society. My mother had her own choices and her human rights were taken from her. I am still battling for justice even now after my mother died.''

The above is the family's account only. CCFTV is contacted by families reporting to us similar experiences of elderly loved ones being placed in care homes during the pandemic against their wishes and the wishes of a Lasting Power of Attorney Health and Welfare under the Covid Law legislation. If you are interested in this case study please contact ccftv.cares@gmail.com

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Care Campaign for the Vulnerable is learning of the pressures faced by conscientious led Care Providers striving to offer a caring and safe environment to both service users and staff. Safety monitoring is proving to be a invaluable care assist tool - bringing a more open and transparent culture into care homes as well as saving valuable resources within the care home sector and the NHS

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