News uncovers families' heartbreaking tales of dementia patients 'left to rot' in Lothian hospital wards

Published on Tuesday 13 April 2010 09:48

IT was a rare moment of recognition for Janet Moss as she gazed deep into the eyes of her son Alistair.

Sitting in ward one at the Royal Victoria Hospital, the 78-year-old dementia sufferer spoke clearly for the first time in two weeks, and there was no mistaking her despair.

"Please don't let me die in here," she implored.

Mr Moss struggled to hide his heartache as he sought to console his distressed mother, but her desperation came as no surprise after weeks of witnessing what he describes as chaotic and disturbing events on the ward.

When it comes to concerns about serious failures in dementia care, he is far from alone.

The growing strain which caring for an ever-increasing number of patients with dementia has placed on the region's hospitals has led to a series of complaints from families and watchdogs.

They paint a picture of often hard-pressed staff struggling to cope with the challenges of caring for their confused and vulnerable patients, while those with dementia are frequently "left to rot" with precious little stimulation beyond the visits of family and friends.

An investigation by the Evening News has uncovered a series of disturbing incidents and allegations made by the families of dementia patients across the Lothians. These include:

&149 an extremely confused dementia patient dying after being allowed to refuse vital treatment;

&149 patients attacked and allowed to injure themselves;

&149 relatives complaining of having to separate fights between patients;

&149 not enough staff to provide proper care and support;

&#149 failures to record important patient history details.

Alzheimer Scotland described some of the complaints as "appalling" and warned the standard of dementia care in many Scottish hospitals "falls well below what we expect it to be".

Among the concerned relatives is the Duchess of Hamilton who said she would "do anything" to avoid her husband having to return to Herdmanflat Hospital, in Haddington, where he was treated last year.

The families of two patients currently receiving care on the Royal Victoria's specialist dementia ward one contacted the Evening News with their concerns.

One of them was Alistair Moss, 53, of Longstone, whose mother Janet has been a patient there for the past two months.

He praised the caring approach of the majority of nurses, but felt they were often over-run.

"I've had to separate fights between patients because there hasn't been enough nurses around. I've seen patients with black eyes, although that has subsided since I pointed it out, and when my mum lost her glasses they didn't know what bed to look in because the nurses said they just sleep in any old bed at night and often swap," he said.

"I've watched some nurses manhandle the patients in a really rough way, and within hours of being there my mum had abrasions and nail marks on her arms."

Mr Moss, who praised the care his mother previously received at the Royal Edinburgh psychiatric hospital as "first class", said he had been alarmed by his mother's rapid deterioration since she was admitted to the Royal Victoria.

"I appreciate that it is a degenerative illness and we can expect it to get worse, but the speed of it in there has been alarming.

"The only clear words we've had from her in the past couple of weeks was when she looked right at me and asked me: 'Please don't let me die in here'.

"Three or four new patients have come in since then and I've noticed the same decline in them. It just isn't a place that makes you better, it's a transit ward."

A relative of another ward one patient, who asked to remain anonymous, echoed many of Mr Moss's concerns.

The relative added: "It reminds me of a holding cell. It's almost like she doesn't matter, I can't see that they've taken any interest in her. It makes other hospitals look like five-star hotels."

NHS Lothian has 44 million plans to close the current Royal Victoria building and replace it with a purpose-built facility on the Western General site, which will see every patient have their own room. The NHS said it would offer better patient care in more modern surroundings.

Jan Killeen, director of policy for Alzheimer Scotland, said: "I am surprised that these things are happening on a specialist ward. This man's case seems appalling.

"It is about quality of life too. You can't just wash your hands of dementia patients, there is much that can be done to help them, rather than just containing them in these wards."

The Duchess of Hamilton told how she had taken her 71-year-old husband home from the Haddington hospital.

"I don't want to criticise the nurses, I was a nurse myself, and they work hard, but more training is needed and staffing levels aren't high enough," she said.

"At Herdmanflat everyone is in one room and my husband declined so rapidly. He actually drove himself to the hospital, with me in the car, so they could check his drug levels.

"I knew when I went to visit and he had climbed on to a window to try and get out that things weren't right, and I removed him the next day."

In another case, the Scottish Public Services Ombudsman upheld a complaint earlier this year against NHS Lothian after a woman with dementia died in Liberton Hospital. Despite being ruled unfit to consent to treatment, she was allowed to refuse medication for pneumonia and later died.

Jackie Sansbury, NHS Lothian's director of strategic planning and modernisation, said: "As with all health boards, NHS Lothian works with national guidelines and standards to ensure that we deliver the best standards of care for people with dementia.

"We have developed a dementia action plan which we are now implementing.

"NHS Lothian is meeting the targets set by the Scottish Government in relation to dementia and as part of this work we are also supporting carers and families of people with dementia. Examples of this include a 140,000 refurbishment of the dementia ward at the Royal Victoria Hospital following Scottish Dementia Audit recommendations.

She added: "While I understand that Mr Moss is generally very happy with the nursing care being provided, if Mr Moss has any concerns I would urge him to make a formal complaint to allow us to thoroughly investigate any comments made.

"We would also wish to correct factual points and reassure the public that patients have and sleep in their own individual beds and that appropriate levels of trained nursing staff are on duty and provide excellent care to our patients."

Last year, dementia patient Ronald Mellor, 83, was left with a black eye and gashed face after being attacked by a fellow patient in St John's Hospital, Livingston. NHS Lothian apologised but said his illness often made Mr Mellor behave aggressively.

WELFARE REPORT CONDEMNS STANDARD OF CARE

THE standards of dementia care across Scotland were damned by the Mental Welfare Commission for Scotland following a series of unannounced visits.

Older and Wiser, the report it produced in 2007 following the visits, found many dementia nurses were unaware of good care guidelines, and half of patients analysed had no recreational activities.

It concluded: "Staff want to provide excellent care in the right kind of environment but feel constrained by limited resources."

My Dorothy was ignored because of her Alzheimer's

WHEN she was admitted to the Edinburgh Royal Infirmary for hip surgery after a fall at her care home, Dorothy McIntosh was coping well with dementia.

But the 89-year-old's husband, Jim, 90, of Comiston, says she was left lying in dirty incontinence pads in hospital and did not receive physiotherapy like other patients. Although she later received physio sessions at the Pentlands Nursing Home, she was left confined to a wheelchair after the accident in 2008.

"My wife entered the ERI a physically fit, healthy woman whose main pleasure in life was walking in the gardens or corridors of her nursing home," he said. "She was discharged from the ERI crippled for life, in constant pain and confined to a wheelchair for the rest of her life."

NHS Lothian said the treatment she received was the best course of action for her, but Mr McIntosh added: "I feel that because she suffered from Alzheimer's, she didn't receive the care anyone else would have got.

"I feel like it's them saying 'they're going to die anyway, so what's the point in bothering with them'."

THE FACTS

Dementia describes a range of brain disorders, all involving a loss of brain function that is usually progressive and eventually severe.

&#149 An estimated 9,000 people in the Lothians have dementia.

&#149 Within 15 years, that figure is expected to rise to 14,000.

&#149 One in five acute patients at the ERI has dementia.

&#149 The most common form is Alzheimer's disease, which accounts for two-thirds of cases.

&#149 Women are more likely to be affected than men.

More information

&#149 www.nhslothian.scot.nhs.uk

&#149 www.alzscot.org

&#149 www.scotland.gov.uk

&#149 www.mwcscot.org.uk