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The Forgotten

HUNDREDS of the most vulnerable people in Scotland have been "left behind" in mental-health institutions where they receive the poorest care in the country, according to a damning new report.

Margaret has been a patient in Ailsa hospital, Ayr, above, since she was 17
Margaret has been a patient in Ailsa hospital, Ayr, above, since she was 17

The report by the Mental Welfare Commission (MWC) reveals 354 people are still in long-term care in psychiatric hospitals, despite the massive drive to care for people in the community.

In some cases Scottish patients with severe and acute mental-health needs are being cared for in dilapidated, unkempt wards that form part of the old institutional asylums, some of which are Victorian. Many have been in them for 30 or 40 years.

The report found many patients were suffering because of "outdated and institutional practices" such as being forced to queue for medicine.

It criticised NHS boards for the fact that many of the patients felt unsafe, almost half did not have individual activity plans, and many were subject to unnecessary restrictions because of "blanket policies" – such as not being able to access drinking water.

One-quarter of patients have to share rooms and two-thirds of the wards were "poorly decorated or maintained."

Donald Lyons, chief executive of the Mental Welfare Commission, said: "What we have after the drive to get people out into the community is this group with the most severe illnesses who cannot currently manage in the community with the facilities available there, that have been left behind in some of the poorest, most out-of-date accommodation.

"When I started in mental health in 1982, institutions were by no means perfect. They held hundreds of people, but each of them had a life with football clubs, bowling, work activities.

"The trouble is that what we have now is a small group of people who need the highest level of support but are in isolated standalone units with the life and activities of the institutions gone. It is really hard on staff. We found the condition of two-thirds of the wards to be very poor. There is a sense that these people have been forgotten about. It is not an area that NHS boards treat as a priority.

"These people are in the poorest services the NHS has to offer. They should be treated with dignity and have a good quality of life.

"We are right behind the impetus to move people into the community but we can not neglect those left behind. The important thing is that it can be done properly and hospitals like Ailsa in Ayshire are examples of this."

Because of ward closures and mergers, individuals with very different needs have been placed together – with those with extremely challenging behaviour left on the same wards as those who should have greater freedom. The report also said there had been some improvements since 2008 – including a reduction in the numbers of people sharing a room.

The report states: "We fully support the drive to shift the balance of mental-health care toward community services. We find it unacceptable that those with the highest needs are being left behind in poor accommodation.

"They need more access to services that promote recovery. We identify key messages in this report to draw attention to the high level of unmet need in those who remain in hospital on a long-term basis."

A SCOTTISH Government spokesman said: "We welcome the report's finding that there has been progress since 2008 but recognise there remain areas for improvement in patients' care.

"We expect NHS boards to act on the report's recommendations. The Scottish Government's new Mental Health Strategy, to be published in the coming months, will focus on the rights of people with mental illness.

"We want to build on the successful mental-health promotion, prevention and recovery work of recent years, ensuring that people who experience mental-health problems know how to access help and enable services to intervene quickly – putting the person, their family and carers at the centre of care and treatment."

How it should be done ... a refuge for those who cannot cope

JACKIE was just 17 when she was first admitted to the psychiatric hospital where she still lives, aged 53. She is one of more than 350 people left behind in Scotland's psychiatric wards, people that members of the public believed were now integrated into the community.

Built in 1869 as Glengall asylum, Ailsa hospital in Ayrshire has been transformed in recent years. Patients in long-term psychiatric care have individual rooms, personalised care plans, and access to their own kitchen and garden.

Almost all are allowed to go into town – some escorted by a nurse, others on their own. It was one of the few psychiatric wards commended by the Mental Welfare Commission's report.

Outside it still looks a little like a Victorian establishment, but inside it is bright and airy. Sunlight streams through the large windows in the lounge area where the women talk to staff and read.

The garden outside the open door is bright and colourful, with a stylish wooden pagoda and rockery overflowing with flowers.

Jackie, above right, says she has been diagnosed with unstable emotional personality disorder but copes well now because of the quality of care she receives. She has tried living outside the hospital but failed to cope and has a long history of cutting herself or overdosing when stressed.

"The first time I came in I was overdosing almost every day and I was fire-raising," she says. "I don't do that any more, though.

"The longest period I have been away from the hospital was for a year. I got a house and had support but I started cutting myself and fire-raising. They put in sprinklers but I had to come back to hospital. The fire-raising is something I do when I can't cope.

"I had a pretty bad upbringing. If I wet the bed I was forced to drink the puddles from the pavement outside. My sister was in the hospital here too with mental-health problems but she died."

She feels this is the best place for her to be. Her story illustrates the complexity of the needs of some people who cannot be cared for in the community, but also how their needs can be best deal with.

"I like it here," says Jackie. "I do art classes. I get reflexology. I spend time working in the garden. I can cook here when I choose. It's the best thing that ever happened to me. I haven't cut myself for a good while.

"Maybe further down the line I'd be able to get a flat in town. We'll just have to see. I've been here such a long time the staff and patients feel like family."

"We are recovery-focused," says William Lauder, the hospital's clinical nurse manager. "In my time, it has gone from long-term care being considered as a home for life to it being about rehabilitation and recovery.

"We had one man discharged last year who had been here for 42 years. In times past the treatment options were not as good or effective which could lead to lengthy periods of time in hospital and, unfortunately, institutionalisation. Modern, effective treatments, including medications and talking therapies, have had a great impact on the treatment of mental illness and prognosis as well as better understanding and acceptance by society.

"In 1998 we had 114 longer-term beds, now we have 52 rehabilitation beds reflecting the change in the balance of care to the community. There are acute admission wards for people who will be in for, on average, 28 days. For those in longer-term accommodation it is not possible to say how long they will need to stay until they can be discharged as everyone's path to recovery is different."

Carolynne Thomson, the senior charge nurse, worked with Jackie when she was first admitted 36 years ago.

"We believe everyone has the potential to be discharged from hospital at some point," says Thomson. "They may not be perfect and may still require considerable support - There is nothing locked here other than our office and the treatment room.

"Many of the people here have been tried out in the community but unfortunately didn't prove sustainable at that time. Often their symptoms were too severe. Everyone has their own room and we got money from the lottery and local donations to make a garden."

Margaret, 57, above left, has been in institutions since she was 17 and can no longer remember her mental-health diagnosis. She has been in Ailsa hospital since May 2008 after a short period out in the community and has no desire to live outside.

"I was in trouble with the police when I was 17 for playing music loud and taking cannabis," she says. "I got sent to Cornton Vale. Since then I've always been in hospitals. I was in Glasgow but since then I've been down here for a long time. I like it here. Every four days I get to choose a treat of some kind of what I want to do as part of my programme. I can go to the bingo in town with a nurse, for a meal or go to the pictures. I don't want to leave here. I don't want to go to a house."

WHAT THE REPORT SAYS

Some wards are not fit for purpose and this, in turn, will impact on patients' recovery.

Around 30% of 118 individuals visited in 2011 had felt unsafe on the ward in the past year.

Staff in almost half of the wards indicated that there were individuals who would be better placed elsewhere. One visitor was told by the ward charge-nurse that at least 65% of individuals did not need to be in the hospital. "He indicated that they should be in supported accommodation but that this was not available at that time."

The report stated: In some cases, the inappropriate placement of individuals in wards may have arisen from closures elsewhere. A visitor to one ward witnessed one person who could have been moved to rehabilitation but this had not happened because of funding problems ... In another area, someone had been moved ... due to sexual advances to others. This person was very unwell and had the potential to upset other patients due to his behaviour."

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