Practitioners: Carol Roy, team manager and Eileen Watts, senior social worker
Field: Hospital social work
Client: Margaret Bailie, 49, is disabled by curvature of the spine, and was admitted to hospital suffering from a degenerative respiratory disease. She is married to Robin and they have two daughters, Nicola, 16 and Juliet, eight.
Case history: Margaret’s deteriorating health had caused her several admissions to hospital over the years. Her respiratory disease requires her to use an oxygen cylinder constantly which restricts her mobility. On this occasion the hospital social work team co-ordinated a full multi-disciplinary assessment, out of which problems within the family were also identified. After an in-patient treatment for her chronic respiratory disease, she was referred to the Halfway Home – a joint funded unit which aimed to continue rehabilitation and recovery and to reduce dependency within 28 days. In Margaret’s case it aimed specifically to maximise her mobility before a discharge home.
Dilemma: Sorting out what was best for Margaret resulted in discovering her family’s needs are also a cause for concern.
Risk factor: With a chronic respiratory disease Margaret’s condition was going to deteriorate further but her family’s own needs might detract from their ability to care for her.
Outcome: Margaret’s disease ultimately caused her death but she was able to live at home with her family around her, whose needs had also been met.
One-fifth of social workers employed by social services departments are hospital-based. Even before the National Health Service and Community Care Act 1990, when health and social services were expected to develop community care together, their very location has always made them prime candidates for improved joint working. And, with increased emphasis on freeing up hospital beds, hospital social work staff helped prevent unnecessary admissions and provided suitable placements after discharge.
“Before the Community Care Act, hospital social work had been thought of as a bit of a luxury. We might or might not have patients referred to us. We were a bit on the periphery of health care,” says senior social worker, Eileen Watts.
But that changed. Four ventures typified the collaborative approach being developed in Warwickshire in the mid-1990s: a winter pressures group; a responsive emergency assessment care team; a palliative care group; and a Halfway Home to aid rehabilitation and reablement.
It was the latter scheme that would provide the catalyst to services for Margaret Bailie and her family. Margaret had been admitted to hospital with a chronic respiratory disease that due to the use of an oxygen cylinder, also restricted her mobility.
It was at this point that Margaret was referred to Watts and her manager, Carol Roy. The multi-agency assessment began picking up on concerns within Margaret’s family and referred her to the Halfway Home – where support could be continued for up to a further 28 days. “Rather than keeping people in beds we had this intermediate place to work towards reablement,” says Roy.
Watts says: “We discovered that lots of things had been going on with this family. Social services, education and health had all been doing something. But nobody knew what anybody else was doing – so we were able to bring it all together.”
Margaret’s husband, Robin, had mental health problems that rendered him unable to handle the situation. The younger daughter, Juliet, had learning difficulties and physical disabilities, used a wheelchair and attended a special school. The older daughter, Nicola, had assumed responsibility for the family. However, at 16 and in the middle of her GCSEs, she was, unsurprisingly, becoming overwhelmed. “She began talking about getting engaged or pregnant just to get out of the situation,” says Watts.
Roy adds: “During the time in the Halfway Home, we were able to see the holistic needs – not just of Margaret but the whole family.”
The team impressively set about tackling each strand of need. Social services home care would provide care on discharge. A mental health social worker, community psychiatric nurse and a mental health community support worker began working with Robin. Respite care with foster carers was arranged for Juliet, who also received counselling services to help her come to terms with her mother’s condition. An educational psychologist worked with Nicola to show her that the responsibility for the family was not hers and how she could still offer support but need not be the main carer. A district nurse worked with Margaret on managing her oxygen and medication.
“We facilitated a series of planning meetings as we worked towards discharging Margaret home from the Halfway Home,” says Roy. The family were all part of this decision-making process. “It was important,” says Watts, “that everyone involved in the planning saw it as a jigsaw – one part being dependent on the next.” It was a triumph of communication and inter-agency co-ordination.
“I think it’s common sense that if you’ve got people working together, you’re not wasting resources by having people do the same thing or asking the same questions. It’s also a much more positive experience for the service user,” says Watts.
The last multi-disciplinary review concluded that the family was now functioning better than before the crisis brought about by Margaret’s hospital admission. “Although her prognosis remained poor, the family were better equipped to understand and come to terms with the outcome. It was a very good piece of work,” says Watts.
The family, clearer about their roles and at ease with each other, were able to spend the short time that Margaret had left together. And for the family this was vitally important.
Arguments for risk
- The additional, and relaxed, time available at the Halfway Home gave staff the opportunity to discover the wider needs of the entire family, which the pressure of a hospital environment would not permit. Not only could Margaret’s mobility and her respiratory and medication management be improved but an understanding of the barriers to the family’s well-being was built up.
- Without the Halfway Home it is likely that Margaret would have been re-admitted to hospital – possibly for good. “She would have gone home to the same situation – and it would have broken down again. There were four unhappy people in that family in four different corners,” says Watts.
- To sustain Margaret at home not only were support services essential but the family dynamics had to be co-ordinated to cope. This was the crucial element to this successful piece of work.
Arguments against risk
- Margaret’s respiratory condition was chronic. Her health was deteriorating and her condition terminal. The family clearly have their own needs and to try to remedy these in the short term could be merely planting seeds of future breakdown.
- Sometimes the desire to keep beds free means that people are moved on too quickly – only to be inappropriately discharged and thus be readmitted to hospital in a worse condition that could see them remain in hospital until their death. The Halfway Home is an attempt to slow down that process in a caring, meaningful way – but again is time-limited. This might mean discharge home could still be inappropriate.
- The older daughter, Nicola, was the linchpin keeping the family together. Despite attempts to free her from this responsibility, the inevitable death of her mother might make this difficult as her mother was discharged back home where traditionally Nicola had responsibility. The subsequent guilt and feelings of inadequacy could harm her.
Intermediate care has generally focused on older people being blamed for taking up the nation’s hospital beds, writes Jill Manthorpe. So it is good to have an example of intermediate care working for other age groups. Intermediate care has also been seen as an opportunity to get people literally back on their feet, and so this story also helps remind us that it can be used constructively to improve outcomes of many types.
The risks described here are around uncertainty. And this of course is what risk is all about. The debate described focuses on “buying time” and finding a place where professionals can make decisions about priorities and roles. The arguments for risk seem to focus on the family’s dynamics and difficulties. But why had services not worked together previously?
Discussion of the arguments against risk notes the pressure of the care escalator. People are expected to move on and services feel they are failing if someone cannot move smoothly out of the system.
Risk research teaches us that if we set up a “failure” or “blame” culture, we will not make connections. It is a sad indictment of a hospital that people may need to leave before their care stands any chance of being holistic. Risks remain for the newly bereaved family, in the short and long term. The professionals encountered may move on and the family may again be left until another crisis develops. Someone, we hope, is taking on a co-ordinating role.
Jill Manthorpe is reader in community care at the University of Hull. She chairs the Hull carers’ strategy group.