Editor-At-Large: Ignored and neglected, why did my sister have to die like this?

"I watched helplessly as she was shunted around from carer to carer, sent home with the wrong drugs, breathing with an oxygen cylinder"
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The Independent Online

My sister died last Thursday, on the same day that The Independent published the shocking diaries Pat had written, chronicling the failings of the National Health Service during the last three weeks of her life. Unfortunately, she suffered a seizure in the early hours of Thursday, and by the time I had reached Hillingdon Hospital in west London and the ward she had made her family promise we would never let her return to, she was barely able to speak. We lay the printed pages on her bed, not sure whether she realised just what a blow they were striking for hospital patients. In any event, four pages laying bare the ghastly ineptitude of Hillingdon Primary Care Trust in a national newspaper could do little to ease her last hours.

When my sister was diagnosed with terminal cancer earlier this year, she was, as always, ruthlessly practical. Pat had smoked all her life. She was over 55, and when she was found to have tumours in her brain as well as her lungs, she knew that she would not be around for another decade. She had worked hard all her life, paid her tax and National Insurance, and had absolute faith that the NHS would provide her with all the treatment and nursing care that she needed.

How horribly over-optimistic that turned out to be. She had read about Hillingdon Hospital's cash crisis and massive debt in her local newspaper, but Pat never believed that these problems would end up ruining the short time she had left to live. And I was to watch helplessly as my sister was shunted around from carer to carer and from nurse to nurse, sent home from hospital with the wrong drugs, no diet sheet, no information about the effects of the medicines she was taking, compelled to sit at home breathing with an oxygen cylinder waiting for a doctor to visit her. No one came for two weeks, and her GP didn't visit her at all before her life ended.

After I could take no more, I ranted at someone in the anti-coagulation unit. They said they had no records for my sister, even though she had been a patient at the hospital for seven months. Next day, I witnessed a visit from a lady from the complaints department, who turned up at my sister's bedside for a chat, leaving her notebook behind in the car. Pat had been sent home in an NHS delivery van, had suffered the indignity of a mixed ward (with a naked man masturbating in front of her at night), and was not allowed a second pillow "because we can't afford two". This complaints woman told us: "We value hearing patients' stories because it helps us fine-tune our standards of care." Hillingdon doesn't need to fine-tune. In Pat's experience it needed to go back to basics. After two weeks and much complaining, the hospital sent a doctor from the Palliative Care Unit (jokily referred to as "Pals" in a letter from the chief executive, as if Pat needed another pal - what she needed was co-ordinated care and one person in charge of her case). This doctor told Pat not to ring 999 if she felt ill at night, but to call the "Harmony Out of Hours Doctors Service". Late last Wednesday, after I'd left, Pat felt nauseous. Mick, her husband, rang the Harmony number to be told they were very busy and that a doctor could not visit for at least two hours. After two hours Pat was starting to have a fit, so Mick rang again to be told the doctor would be at least another 45 minutes. He then disregarded Miss Pals' instructions and dialled 999. My sister suffered a seizure en route to Hillingdon A and E department and another when she got there. She was revived and placed back on Grange Ward, the mixed ward she had loathed so much before.

When I arrived nobody was in charge of her, the special needs nurse she had seen before was unavailable and the staff nurse told us the doctors would be around "later". I called Pat's oncologist on her mobile and demanded my sister was sent home to die as she had wished. The racket from the cluster of trainee doctors and nursing auxiliaries chatting and joking around the nurses' station made it impossible to rest, creating a totally unsuitable atmosphere for a terminally-ill patient with a distressed husband and son. I rang the chief executive's office and was told that "a great many of our operatives are off-site at present". When all else fails, jargon prevails. The acting head of nursing and the director of operations talked to me and seemed worried that we might take legal action against the trust. They also repeated the mantra about "valuing patients' stories".

Pat's oncologist, Miss Lemon, happened to be in the hospital - she is only based there one morning a week. After my desperate phone call, she popped up and saw Pat. Within 20 minutes a bed had been found for my sister in the Michael Sobell unit, an NHS hospice within Mount Vernon Hospital. In spite of it being categorised as an emergency, no one could find an ambulance. After an hour we were told by the staff nurse that another one would have to be booked and might be "another hour". I threatened to call a private ambulance service and use my credit card to get my sister out of this noisy, unsuitable environment straight away. Suddenly an ambulance materialised.

The hospice was welcoming, calm and exactly the right place for Pat, even though by now she was barely conscious. We were brought teas, given cards with 24-hour numbers to call, shown quiet rooms and easy chairs to doze in. My sister was visited by her specialist and received regular monitoring during the afternoon. The care she had never had during the past three weeks at home materialised, but it was too late. At least she died with dignity, and not in the hell of Grange Ward in Hillingdon Hospital, where she had been told to roll up her blanket herself in order to support her swollen legs. That's not any kind of care, is it?

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