Patient with learning difficulties ‘treated like prisoner’, report reveals

Patients were interviewed at both Muckamore Hospital in Antrim and Longstone Hospital in Armagh
Patients were interviewed at both Muckamore Hospital in Antrim and Longstone Hospital in Armagh

A former patient with severe learning difficulties was forced to use a toothbrush to clean floors at a Northern Ireland hospital, it has been claimed.

The ward regime was described as hell and visiting relatives alleged it was as if somebody had thrown away the key, according to a report.

One patient told researchers: “There were no birthdays in lock-up. You had to get up at 6am for physical training outside, no matter what the weather was like. You had to clean floors with a toothbrush.”

Details of the allegation were contained in a report by Belfast-based lobby group the Patient and Client Council (PCC).

The organisation, which represents the interests of those being treated, interviewed 15 people with a learning disability about their positive and negative experiences while under care at Muckamore Abbey Hospital in Antrim and Longstone Hospital in Armagh. Two family members also expressed their views.

The complaint about the patient allegedly ordered to clean with a toothbrush referred to a period immediately after admission and was followed by a move to a different part of the hospital. None of the patients were identified in the report.

One testimony claimed: “Staff weren’t nice to you there. You had to do exactly what you were told. There was no chance of getting out.”

One person interviewed was a patient for more than 30 years. Another had spent most of their lifetime there and one did not know how long they had been in care. The report will be sent to health minister Edwin Poots, Stormont’s health committee and various trusts which run services.

In 1995, the Department of Health said all long-stay patients should be moved into the community. But targets have been missed, according to the report, and some patients remain in hospital. The latest official target is 2015.

There are an estimated 16,366 people - nearly 1% of the population - with a learning disability in Northern Ireland. More than a quarter have severe or profound disability.

Disabilities include a significantly reduced ability to understand new or complex information or to learn new skills, with a reduced ability to cope independently.

The report into the patients’ conditions highlighted lack of freedom and choice, little privacy and in some cases, isolation. It also noted support provided by staff.

One patient interviewed said: “I worked in the gardens. I like working in the gardens but you were escorted. You had no freedom at all. Like a prisoner.”

Another added: “You weren’t able to do your own thing. You weren’t a free man, you had to go to day care every day, and it was the same thing all the time. We were told on our schedule what to do every day. The staff decided.”

One patient claimed: “They watched you every day in through the window; they had a wee blind that moved. I used to lock my door.”

While two people said the presence of too many staff affected their sense of freedom, others reported that there was not enough staff.

“You couldn’t even go for a walk, “ one patient claimed. “You had to be accompanied by a staff member and there weren’t enough to take you for a walk. There was nothing to do. You were stuck in there 24/7, just looking at the walls. It was awful.”

However one male patient said he was allowed access to the kitchen and laundry and enjoyed freedom to look after himself. There were accounts of dignified treatment with respect received from staff to help them feel better.

Health inspectors the Regulation and Quality Improvement Authority (RQIA) last year noted positive comments about the support, care and protection provided on the ward at Muckamore but said staffing levels were stretched, affecting the provision of activities.

Hobbies at both hospitals included cooking and washing cars as well as puzzles or arts.

One patient considered leaving and getting a flat but decided to stay on - fearing they would not know how to look after money and start drinking alcohol again.

However others were attracted by the freedom in the community to go to bed or get up any time they wanted to, the report said.

Family members said most staff in both hospitals were helpful and kind. Patients with more intensive needs had been moved away from those more moderately affected.

However one relative likened one of the hospitals to a prison.

She added: “Bars on the doors, locks on the doors, it was like she was incarcerated. If it wasn’t for us...there were people there you’d think people had forgotten about, they’d locked them up and thrown away the key. She was incarcerated. If she had been in prison she would have got out a long time ago, that was the only way to look at it.”

A spokeswoman for the Southern Health Trust which runs Longstone said the organisation had fully embraced the shift from hospital to community care.

Over the last five years, 75 patients have moved from Longstone Hospital into the community. A total of 19 remain in Longstone and all have an identified placement agreed.

Each patient has had an independent advocate to work with them and their families. The advocacy worker will remain in place for a year post-discharge to ensure on-going communication to make transition from hospital to community as smooth as possible, the trust spokeswoman said.

She added: “The regional policy to move patients from long stay hospital care to community settings reflects a fundamental change in how best to manage patients with a learning disability.”

She said: “Care provided within hospital reflects the complex and varied needs of patients for whom the trust has a duty of care.

“The change from hospital to community-based care offers independent living in a safe and secure environment with each placement appropriate to meet the individual needs of the patients.”

A spokeswoman for Belfast Health Trust, which runs Muckamore, said the organisation fully agreed that people with a learning disability should not have a hospital as their home. It was working to ensure all patients are resettled by March 2015 with access to a range of activities and experiences which will provide an enhanced lifestyle.

“Within the hospital each patient has a person-centred care plan and arrangements are in place to take account of the views of patients on how the service is planned and delivered,” she added.

“These arrangements include an elected patient council within the hospital as part of the trust’s arrangements to ensuring positive experiences for all patients.”

She said incremental resettlement targets have been met and progress remained the subject of continuous review to achieve transfer of all patients within agreed timescales.