Learning difficulties book shows nursing progress

Colin MacPherson has wirtten a book based on his experiences as a nurse. Picture: Lisa Ferguson

Colin MacPherson has wirtten a book based on his experiences as a nurse. Picture: Lisa Ferguson

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THE door to the hospital ward opened and new boy Colin MacPherson tried to get to grips with the scale of human misery laid before him.

Perhaps the young trainee nurse couldn’t be blamed for being a bit overwhelmed. This was the early 1980s after all, when words like “learning difficulties” conjured up visions of superstrength strange-looking people with even stranger problems, perhaps with evil tempers and wild manners, sharp teeth and a bit prone to vicious outbursts.

Known about but rarely seen, they were “oddballs” tucked away in hospital wards like the one he was about to enter, hidden on the fringes of town. Out of sight, out of mind.

He was about to embark on a career working with them, but Colin’s experience of someone with learning difficulties were gleaned, he admits, from ill-informed rumour and gossip.

“There was a joke going around that someone with Down’s Syndrome was ten times stronger than the rest of us,” he reflects, reeling back the years to a time not that long ago but which seems almost Dickensian in its grim, mistaken attitude towards some of society’s most vulnerable.

“So I really didn’t know what to expect.”

Beyond the children’s ward door was a scene that almost broke his heart: youngsters, some barely four years old, teenagers, young men old enough to walk into a pub and buy a pint if only life had dealt them a slightly better hand. Some were damaged as a result of epilepsy, others autistic, most unable to communicate. Twenty five of them stuffed into a stifling day room lined with chairs that were stuck to the walls and nothing of note to stimulate or entertain other than a blaring television set.

Far from feeling frightened or wary of them, Colin simply felt crushing sadness for their plight. “It surprised me how young some were,” he remembers. “Others were 18 even 19 years old, waiting to move to an adult hospital. This wasn’t a temporary place for them, some had been there for years, others would stay until it was accepted that people with learning disabilities didn’t have to live like that, they should be in the community.

“I kept thinking about my wee brother, eight years younger than me. Imagine him being here... oh my God.”

His shock at the pitiful scene was just the start. Eventually he’d move into wards at other hospitals where he’d witness gruesome scenes of abuse and neglect, where patients would be forced to share filthy bath water thick with others’ dirt and faeces, wash cloths just used to wipe the previous person’s bottom would be smeared across the next patient’s face, shaving was courtesy of a blunt razor shared between several and human dignity and compassion seemed bereft.

Sometimes there was violence – sadly some of it inflicted by rogue staff on patients – cruelty and ignorance. And among the most shocking element of it all, is that it wasn’t that long ago.

What Colin, 53, from Dunbar, witnessed at the start of his nursing career eventually ceased to be. A more enlightened approach to caring for people with learning disabilities emerged, and patients who had only ever known life in an institution were eased into the community as awareness of conditions like Down’s Syndrome, Asperger’s and brain injuries grew.

Today he’s a lecturer at Napier University working with the next generation of learning disability nurses.

But rather than simply forget the mistakes of the past, he’s drawn on what he witnessed in the eighties to create a sometimes disturbing account of life in a learning disabilities’ ward in his book, which, even though it is fiction, still raises searching questions over why it took so long for society to change its attitude towards those who needed us most.

“It was just 30 years ago,” nods Colin, who qualified in 1987 and went on to become a community nurse and charge nurse working with patients with learning disabilities.

“No-one has really been discriminated against quite like people with learning disabilities. You hear about public apologies for what happened to children sent to Australia or women who ended up in the Irish laundries – absolutely right as the abuse was horrendous.

“But the way that people with learning disabilities were treated was every bit as bad. Vulnerable people, who were simply not cared for or treated properly were systematically locked away.”

His book, The Only Carrot is the Stick, follows the imaginary experiences of a young man who suddenly finds himself working in a hospital ward occupied by men with learning disabilities.

It is based on incidents experienced by Colin and some of his former colleagues, some of which are simply awful, others humorous, while some are uplifting illustrations of the difference a kind act or moment of tenderness can make to patients’ lives.

He prefers not to expand on precisely where or when individual incidents occurred through respect for patients and families, but his career took him to hospitals in Lanark and Lothian, including the now defunct Gogarburn Hospital on the outskirts of Edinburgh. Today the old property which stood at the heart of that particular hospital complex is the staff restaurant for RBS workers.

“Everything in the book has happened,” he says. “I’ve either witnessed it myself or was told about it by others who did.

“It’s about the abuse of vulnerable people, but it’s also about recognising that it happened and – as a Panorama programme showed quite recently – still does happen.”

Among the most shocking incidents involves a vulnerable patient whose manner became suddenly violent following the admission of another man from the State Hospital at Carstairs, who was waiting to answer court charges related to a sex offence.

Unable to fully communicate, the regular patient’s behaviour deteriorated and he lashed out. Blood on his sheets and a sudden inexplicable bout of nighttime incontinence alerted staff that something was terribly wrong.

“The rape story, that happened,” nods Colin, referring to the storyline in which it emerges that the patient had been sexually assaulted by the other man. “And the train... that’s true too.”

That is among the more light-hearted – though still potentially serious – episodes in the book, in which the young trainee and a colleague are ordered to take a large number of patients on a day trip to a steam railway.

Quickly overwhelmed by the scale of the challenge, the pair struggle to encourage their confused and frightened patients onto the train. But as the two nurses waited on the platform for the signal that the train was preparing to leave, it set off – taking almost an entire ward full of patients chugging along with no nurses to look after them.

Other scenes are harrowing, such as instances of patients forcibly medicated to calm them down – in one case a patient breaks his arm after a tussle with a nurse ends with him plunging downstairs. Some are rich in dark humour that reflects how staff often desperate to help improve their patients’ lives coped with the emotional anguish. Other touching scenes illustrate the close bond that often evolves between nurse and patient.

“Nursing patients with learning disabilities can be like Groundhog Day,” says Colin. “Unlike other nursing where you can see people get better day by day, their changes are so small and you can only see the differences after a long period.

“It means you form a different kind of relationship.

“One nursing assistant was in tears as a lad got ready to leave her ward and move into the community. She remembered putting him on a potty when he was a child, now he was a grown man – she’d worked with him so long, she was devastated that he was leaving.”

His departure, however, was a sign that at last society’s view of people with learning disabilities had changed.

“Not that long ago people were ashamed if someone in their family had a learning disability,” adds Colin, currently taking a year out of nursing to lecture at Napier. “If someone with a learning disability was caught stealing apples or hit someone, they could be locked away for their whole lives.

“In community care, people have to be supported properly or you exchange one cage for another, but never has it been in my heart to see people stay in hospital.”

Among a new generation of nurses – whom he has generously given free access to his book – the encouraging signs are that they are anxious to carry on making improvements.

“They come to the job having gone to school with people with learning disabilities, they already know so much more than I did.

“It’s a job that gives you an incredible sense of achievement – nothing beats the feeling of getting a smile.

“It doesn’t feel like work.”

• The Only Carrot is the Stick by Colin MacPherson is available in ebook format from Amazon, £4.25.

Shift towards community care

The Mental Deficiency and Lunacy (Scotland) Act was passed by Parliament in 1913.

It recognised the distinction between mental illness and mental handicap and required authorities to provide separate institutions for those with what are now termed “learning disabilities”.

One of the main local facilities was at Gogarburn, near Edinburgh Airport. It went on to house 1000 mentally handicapped people, who were given small jobs working on the hospital farmland, could use the estate shop and formed Scouts and Guides troops.

Changes to legislation in the Sixties meant the hospital changed from a “custodial” institution where patients were encouraged to contribute to hospital life, to one focused on training and occupational therapy designed to equip them with skills for living in the community.

It closed in 1999, as methods for caring for patients with learning disabilities shifted towards community care.

Understanding and treatment of learning disabilities has changed dramatically in recent years. The language used to describe patients has also changed – derogatory terms which were in common use have now become socially unacceptable.

Many local authority schools now have integrated units which enable children with learning disabilities to grow up and learn alongside other youngsters.

People with learning disabilities also have more control over their lives, and they are no longer confined to living in long-stay institutions and asylums.