After being rushed into hospital and undergoing an operation, you might not be in the best frame of mind to make decisions particularly if you have experienced something as traumatic as having both your legs amputated above the knee. Simple questions can be perplexing, let alone whether you should give up your home and move into residential care.
And yet this was the corner that 79-year-old Roy Johnson seemingly found himself being backed into by hospital staff. He may well have thought that, as the experts, the hospital staff were right. Ward staff have their own pressures – to move patients on and make beds available. And they didn’t think that Johnson, now a double amputee with poor sight, could get in and out of a wheelchair on his own.
But a hospital social worker wasn’t so sure that Johnson couldn’t make it back in the community. And it was clear, given Johnson’s state of mind, that he was in no shape to make any such decision. The worker referred Johnson to the Victory Unit – a social services-run eight-bed rehabilitation unit that provides occupational therapy, physiotherapy, mental health nursing and social work.
“It’s fair to say that some hospital staff don’t really know what’s available or possible in the community – and why should they?” says Kevin Mitchell, team manager at the community rehabilitation scheme and Victory Unit. “Services are changing and developing so I wouldn’t want to make a long-term decision about someone’s future until they’ve had a longer period of assessment in a more social environment.
“Roy didn’t have anyone advocating for him or supporting him. He’s low, his whole life has changed and if someone says you won’t be able to live on your own you’re going to believe them. Why would you challenge that?”
But, crucially, it was challenged. The Victory Unit’s senior occupational therapist, Paul Frampton, carried out the initial assessment of Johnson on the ward. “He did some tremendous work with Roy,” says Mitchell. “He could see the potential. But you’d want that for anyone. Residential care should be the last option and we should always be asking questions of community services to try to support people. We want to push the boundaries of what community care and housing can offer.”
Before admission Johnson had been neglecting himself at home. “He wasn’t paying bills and, while in hospital, bills piled up on the doormat. The social worker, Sarah Hollins, negotiated with the companies involved, helping resolve situations and enabling Roy to start afresh – setting up direct debits and making the future manageable.”
So why did hospital staff miss such potential? For Mitchell it’s a question of risk aversion: “It is just the way a lot of professionals work and the nature of a hospital machine. But life isn’t like that for individuals. We all take risks – but the risk must be balanced and assessed, and the person or client must show ability and understanding.
“We were able to take Roy out of a clinical environment and move him into a more social one, give him more time and, through encouragement he can now use his wheelchair independently.”
Mitchell adds that, although professional support was intense, the impetus came from Johnson. “Once Roy knew what the possibilities were, he was clear: he didn’t want to go in to residential care. He’s a man of few words but he knows his mind.”
Johnson is in a one-bedroom flat in a sheltered housing complex where he receives a care package. “He’s in a social environment and his quality of life is reasonable,” says Mitchell. “He has a level of independence and can make his own choices. Once out of hospital Roy became quite certain about what he wanted and what he didn’t.”
The name of the service user has been changed
Practitioner: Kevin Mitchell, team manager, community rehabilitation scheme.
Field: Older people.
Client: Roy Johnson*, 79, lived alone in a one-bedroom flat in a high-rise council block. Before retiring he worked as a labourer laying cables. Apart from a brother with whom he has no contact, there is no other family.
Case History: Johnson has a long medical history, including heart disease, type two diabetes, asthma, liver cirrhosis and leg ulcers. He is also partially sighted. In spring last year he was admitted to hospital with heavily infected leg ulcers. His poor physical health also had a detrimental effect on his mental health – causing him to become acutely confused. His ulcers had so deteriorated that he had his right leg amputated above the knee. But the deterioration continued and his left leg was also amputated above the knee. Unsurprisingly, this left Johnson depressed. He also found it difficult to organise his thoughts or make sense of his environment. Once he was medically stable, hospital staff felt Johnson would be unsafe to return to the community and should be placed in residential care.
Dilemma: Social work staff needed to advocate community options in conflict with medical opinion.
Risk Factor: Taking a decision to support Johnson in the community could backfire.
Outcome: Johnson has moved into a one-bedroom flat in a sheltered housing complex and is enjoying a good quality of life in the community.
Weighing up the risks
Arguments for risk
* Individuals will respond differently in an assessment in a clinical environment from one held in homely surroundings. Mitchell says: “Given time and when an individual’s mood has improved, it is surprising how people will adjust to their disability or condition and will cope to a sufficient level to remain in the community.”
* In the Victory Unit’s first two years, 86% of those discharged have returned to living in the community. Of these, 97% successfully adapted to home life after four weeks.
* While at first confused and depressed about his situation, once Johnson knew the possibilities and was given the time to improve, he was determined to move back into the community.
Arguments against risk
* The message from the hospital was clear: Johnson needed residential care. As Mitchell admits: “An acute hospital is a big rolling machine – people need beds. It can be daunting for a hospital social worker to advocate for someone who is extremely disabled, and throw up the idea of re-housing him with no family support, and challenge professionals who are experienced and skilled in their roles. It can be hard to find allies to support you in doing the right thing.”
* Johnson’s needs could have been met more cheaply within a residential care setting with 24-hour support, and residents and staff to make relationships with.
* Notwithstanding the finger of blame should things go wrong, given the shortage of wheelchair-accessible flats it could never be certain that anywhere suitable would be found after Johnson’s rehabilitation.
Kevin Mitchell is generous about his health service colleagues’ expertise but he is right to point out that “they don’t really know what’s available or possible in the community”. Patients recovering from major surgery are unlikely to challenge experts who tell them in “clear and categorical terms” that they cannot cope alone, so the hospital social worker’s courageous intervention was correct. People working in acute hospitals often don’t understand rehabilitation.
As caseloads reflect the population’s ever-growing percentage of older people, it is all the more important that NHS staff gain a better appreciation of the possibilities outside hospital walls. A new disability may limit a patient’s capacity to do some of the things he used to manage, but to recommend that he should exchange a clearly institutionalised acute ward for the often institutionalising regime of a residential home was professional malpractice.
There were many alternatives to be explored, sheltered housing one of the most obvious. The factors required were the time for Roy Johnson to adapt to a more limited lifestyle, the OT’s skill in unlocking his still significant potential and the support his new environment offers. Most powerful of all was his own determination to remain independent. Fine words about independence and choice are meaningless unless medical and nursing professionals stop thoughtlessly denying patients the option to exercise them.
Jef Smith is a writer, trainer and consultant in the care of older people
This article appeared in the 3 May issue under the headline “Victory over the doctors”