Mark Drinkwater on how a 39-year-old man with a stroke was able to live in the community with his wife and a live-in carer
Practitioner Patti Simonson, head of social work, Royal Hospital for Neuro-disability.
Field Hospital social work.
Location Putney, south-west London.
Client Robert* is a 39-year-old man who has recently had a severe stroke.
Case history Robert had been an active man before his stroke which has left him with profound physical disabilities and communication difficulties. After eight months recovering at a neuroscience unit, Robert was well enough to be transferred to the Royal Hospital for Neuro-disability for assessment and rehabilitation. He has a partner, Carla*, who is very supportive and visits daily.
Risk factor After 10 months of rehabilitation, Robert wants to return to living in the community.
Dilemma It is uncertain whether Carla will be able to cope with living with Robert in their flat 24 hours a day.
Outcome Robert is allocated housing association accommodation. With the support of his partner and a care package that includes a live-in carer, he is able to live in his own flat.
* Names have been changed
Strokes are the leading cause of disability in the UK and the Stroke Association estimates that about one million people live with their debilitating effects.
As head of social work at the Royal Hospital for Neuro-disability (RHN), Patti Simonson works with many stroke survivors who have acquired profound disabilities. She describes the case of Robert*, a 39-year-old man who attended the RHN for rehabilitation and assessment of long-term care needs.
“Robert came to the RHN several months after the onset of his illness during which time he had been in an acute hospital setting” she says. “He had suffered a cerebral haemorrhage which caused a stroke, leaving him with physical and sensory impairments.”
Stroke survivors often have impaired cognitive function, rendering them unable to make informed decisions by themselves. Fortunately, Robert’s cognitive functioning was unimpaired. However, Simonson needed to work alongside a range of clinical specialists to devise methods of communicating which ensured, in spite of his sight and hearing limitations, that Robert was involved in the decision-making processes.
“He had been a very active person before the stroke,” says Simonson. “Communication was difficult, but we made sure that he was present in all the multidisciplinary team meetings. We used a laptop and projector for communication in group discussions. Robert’s partner was very attentive and a good advocate.”
Robert was adamant that he wanted to live in the community, rather than in residential care. Initially, he wanted to return to live in his existing flat, but an assessment established it was unsuitable for adaptation to his needs. So Simonson sought suitable accommodation and liaised with the local authority and a housing association to explore options.
At this point she was not convinced that Robert and Carla* were aware of the scale of the challenges ahead. She says: “Although it was agreed that there would be a 24-hour live-in carer, it is a lot of responsibility to take on for a partner. A lot of people walk away from a situation like that.”
Moving to a non-care setting significantly increases risks to the service user, but Simonson was keen to support Robert. “When a client knows what they want and expresses it, we do what we can to honour their wishes,” she says. “We spent time working through worst case scenarios with Robert and his partner. There were a lot of health issues that needed addressing. So we looked at what type of care package was needed and adaptations and equipment.”
Gradually, Simonson became convinced that community accommodation was the best option. Increasingly, Carla took Robert to spend more time outside the RHN, after which he seemed much happier.
Months of cautious planning went into the move, including multi-agency work between Simonson, health and social services. Without such planning and appropriate resourcing the outcome might have been different, she says.
“We couldn’t have done this without a client so determined in his wishes and a partner as dedicated as Carla – someone who is a good communicator and looks out for the needs of the client,” she says. “It was a challenge in terms of setting up the appropriate care package, but it’s been a success.”
WEIGHING UP THE RISKS
Arguments for taking the risk
● Commitment of Robert and Carla
Simonson’s person-centred approach honours the clients’ wishes. Robert and Carla are clear that they want to live in a flat together with support.
● Importance of living in own home
Robert has lost much of his independence and it is important to him to live in a home of his own. A fear of possible failure is not a reason to avoid a community placement.
● Robert is happier outside hospital
While there are concerns about Carla’s ability to care for Robert, he is significantly happier when he has spent time outside the hospital. Living in the community would have a beneficial effect.
● Sources of help explained
Alongside community support services, Simonson has worked with Robert and Carla, ensuring they know where to seek support.
Arguments against taking the risk
● Scale of couple’s challenges
Before moving it was uncertain as to whether Carla and Robert were aware of the scale of the difficulties they might face.
● Responsibility on Carla
A lot of responsibility is placed on Carla. She will need significant support as pressures increase, such as when a carer fails to show for a shift.
● What if Carla and Robert break up?
Living in a flat is highly dependent on Carla providing support. If she leaves him, this would jeopardise the placement.
Practitioner Lance Carver, services manager, Herefordshire
The importance of reablement for those who have experienced a stroke should never be understated. In this case, Robert has had a significant period in a specialist unit which undoubtedly will have been key to enabling him to return to a more independent setting.
Although most improvements in independent living skills happen in the first few months after a stroke, it is important to remember that the potential for further rehabilitation continues.
The move to living in the community will no doubt be challenging but the reablement focus should continue. Robert will be exposed to potentially greater risks albeit with greater rewards for him. It may also be cost-effective to pay for additional rehabilitation work now in the hope that Robert will become more independent.
Robert will have a significant reliance on his carer, Carla. It is important that Carla’s needs are assessed in her own right because her continued role is pivotal.
A live-in carer is likely to have a significant impact not only in relieving some of the carer role but also in the relationships within the home. Sizeable care packages such as this with significant dependence on a family carer require close monitoring to ensure high standards.
* Names have been changed
This article is published in the 11 March 2010 edition of Community Care under the headline “New start for stroke survivor”