News

The names of service users and family memebers have been changed.

CASE NOTES
PRACTITIONERS: Jennie Fisher, community care worker (hospital link) and Giles Gardner, operations manager.
FIELD: Older people's services.
LOCATION: Devon.
CLIENT: Bernard Dobson is an 87-year-old man living with his wife, Olive, who is 86. 
CASE HISTORY: About two years ago Bernard first became known to social services because his memory began to fail and he joined the early on-set dementia group. A package of care was put together - mainly to help with getting Bernard up in the mornings because he struggled to initiate his own care - to keep him at home with Olive, who was able to care for him the rest of the time. Things carried on reasonably well for about six months before Bernard suffered a dense stroke, so severe that at the time there were worries he might not survive. He was admitted to the local acute hospital and remained there for several months.

DILEMMA: Olive, an active and able woman, wants Bernard to come home but there is a feeling that nursing care might be inevitable. RISK FACTOR: Bernard's demanding physical and medical needs might be too much for Olive to cope with despite her resolute commitment.
OUTCOME: Bernard has moved back home with a complex and comprehensive care package, and although he is still too ill to move about yet,  Olive is coping admirably.

Each year more than 130,000 people suffer a stroke in England and Wales, where it is the third most common cause of death, after heart disease and cancer. Stroke is also the largest single cause of severe disability with more than 250,000 people being affected at any one time.

Early last year Bernard Dobson, an 87- year-old man who had begun to experience dementia became another stroke statistic. His "dense" stroke was so severe it left him unable to do anything for himself.

He suffered receptive dysphasia (difficulties in understanding what's been said) and expressive dysphasia (difficulties in finding the words to express himself). His inability to swallow meant he had to be Peg-fed: percutaneous endoscopic gastrostomy (PEG), developed in 1980, is a way of feeding people who cannot physically eat but can still digest. He also contracted a severe skin condition causing his skin to peel simply by touch.He then caught MRSA.

Bernard was moved to the local community hospital where he stayed for about five months. "There are rehab facilities there but although we had a speech and language therapist, an occupational therapist and physiotherapist working with him, it was felt that there wasn't a great deal of potential. Sadly, it seemed inevitable that Bernard would be placed in a nursing home," says hospital link community care worker, Jennie Fisher.

However, a visit to Bernard's wife, Olive, began to change perspectives. "She was adamant that she wanted to care for him at home. She was very able and had worked in care homes for older people. So, that became our aim. But Olive was also realistic in knowing that if the risks proved too much then she would accept that," says Fisher.

"That's what happens if you involve people in the planning process," adds operations manager, Giles Gardner. "We have to be clear about assessing risks and being realistic with carers about what they are able to do. When you work with people in an open and honest way, they are likely to accept your professional judgement. It's when you make decisions without including people that you get problems. But Olive was included from the start."

The Dobsons' home - a level-access bungalow - seemed fine for Bernard's return and the district nurse was happy to provide support alongside social services. Meanwhile, says Fisher, Olive became involved in Bernard's hospital care: "She was willing to make the two-bus, 15-mile journey each day to work with the nurses. She learned how to use the pump that would feed him and other necessary equipment that would be needed at home."

And that equipment was extensive and expensive, including a hospital bed, a special pressure mattress because of his poor skin condition, adapted wheelchair, the peg-feed and pump, and ramps.

But the challenge clearly brought out the best in people. Says Fisher: "The couple have a beautiful garden. Olive aimed to have Bernard sitting in the garden - so it was important to have access around the side of the house. So, our occupational therapy technician visited several times to look at ways to make that possible."

Bernard finally moved back home last August. "The district nurse went in twice a day at first to make sure his skin stayed intact as much as possible, and check the Peg-site. Olive deals with the peg but has trained two agency carers so she can have a break," says Fisher.

However, the case presented a strong financial dilemma. As Bernard's needs were health-oriented, health was asked to split the cost of the £742-a-week care package, but agreed to pay only 30 per cent. "Clearly the cost of a nursing care home would be cheaper," adds Gardner. "We could meet our obligations in terms of eligibility by placing him into nursing care, but we haven't - which is why it was critical for us to negotiate a contribution from health. We have to reconcile the Dobsons' best interests with our budget and ethics. Unless all agencies had got together there's no way this could have happened." Indeed, proposals that all complex care packages should be split 50-50 between health and social services are now being discussed.

Fisher continues to monitor progress. "He will never really make any huge improvement but it's nice to see him at home in bed - he's still too ill to get about yet - looking relaxed and happy. Olive has got what she wants as well," she says. CC Each year more than 130,000 people suffer a stroke in England and Wales, where it is the third most common cause of death, after heart disease and cancer. Stroke is also the largest single cause of severe disability with more than 250,000 people being affected at any one time.
Early last year Bernard Dobson, an 87- year-old man who had begun to experience dementia became another stroke statistic. His "dense" stroke was so severe it left him unable to do anything for himself.

He suffered receptive dysphasia (difficulties in understanding what's been said) and expressive dysphasia (difficulties in finding the words to express himself). His inability to swallow meant he had to be Peg-fed: percutaneous endoscopic gastrostomy (PEG), developed in 1980, is a way of feeding people who cannot physically eat but can still digest. He also contracted a severe skin condition causing his skin to peel simply by touch.He then caught MRSA.

Bernard was moved to the local community hospital where he stayed for about five months. "There are rehab facilities there but although we had a speech and language therapist, an occupational therapist and physiotherapist working with him, it was felt that there wasn't a great deal of potential. Sadly, it seemed inevitable that Bernard would be placed in a nursing home," says hospital link community care worker, Jennie Fisher.

However, a visit to Bernard's wife, Olive, began to change perspectives. "She was adamant that she wanted to care for him at home. She was very able and had worked in care homes for older people. So, that became our aim. But Olive was also realistic in knowing that if the risks proved too much then she would accept that," says Fisher.

"That's what happens if you involve people in the planning process," adds operations manager, Giles Gardner. "We have to be clear about assessing risks and being realistic with carers about what they are able to do. When you work with people in an open and honest way, they are likely to accept your professional judgement. It's when you make decisions without including people that you get problems. But Olive was included from the start."

The Dobsons' home - a level-access bungalow - seemed fine for Bernard's return and the district nurse was happy to provide support alongside social services. Meanwhile, says Fisher, Olive became involved in Bernard's hospital care: "She was willing to make the two-bus, 15-mile journey each day to work with the nurses. She learned how to use the pump that would feed him and other necessary equipment that would be needed at home."

And that equipment was extensive and expensive, including a hospital bed, a special pressure mattress because of his poor skin condition, adapted wheelchair, the peg-feed and pump, and ramps.

But the challenge clearly brought out the best in people. Says Fisher: "The couple have a beautiful garden. Olive aimed to have Bernard sitting in the garden - so it was important to have access around the side of the house. So, our occupational therapy technician visited several times to look at ways to make that possible."

Bernard finally moved back home last August. "The district nurse went in twice a day at first to make sure his skin stayed intact as much as possible, and check the Peg-site. Olive deals with the peg but has trained two agency carers so she can have a break," says Fisher.

However, the case presented a strong financial dilemma. As Bernard's needs were health-oriented, health was asked to split the cost of the £742-a-week care package, but agreed to pay only 30 per cent. "Clearly the cost of a nursing care home would be cheaper," adds Gardner. "We could meet our obligations in terms of eligibility by placing him into nursing care, but we haven't - which is why it was critical for us to negotiate a contribution from health. We have to reconcile the Dobsons' best interests with our budget and ethics. Unless all agencies had got together there's no way this could have happened." Indeed, proposals that all complex care packages should be split 50-50 between health and social services are now being discussed.

Fisher continues to monitor progress. "He will never really make any huge improvement but it's nice to see him at home in bed - he's still too ill to get about yet - looking relaxed and happy. Olive has got what she wants as well," she says.

Arguments for risk

• Olive wanted Bernard home and workers were satisfied that Bernard wanted this too.
• Olive proved herself committed and capable not least through playing an active part in his care at hospital. 
• However, workers were clear that while they would aim for getting Bernard home the reality might be different: "Over the months we were debating whether he would be able to go home or not. Olive is a bright lady and she knew that we had to meet Bernard's needs first and although ideally she'd like to be able to do that herself, she knew that it might not happen," says Fisher.
• The care agency commissioned to provide care should Bernard go home also came to work at the hospital to help build up a relationship.
• Respite care is available to help give Olive a rest; she hasn't taken up that option yet but is hoping to visit one of her sons in Bristol over Easter.  

Arguments against risk

• Bernard was and still is in very poor health. His stroke has meant that he can do virtually nothing for himself. His complex medical needs should not be placed in the hands of his 86-year-old wife. She may be loving, caring, committed and able but Bernard needs expert and experienced nursing care. Olive's care work was in residential care and not nursing care - which is the type of care that Bernard clearly needs.
• "It would be easier to have all the care under one roof in a residential setting," concedes Fisher. Indeed, not only easier but considerably cheaper to boot. Olive was accepting that nursing care might be the preferred option and thus, although disappointed, would not have resisted the decision to move Bernard into a safe, secure 24-hour care setting. 
• It seems that aspects of care needed two or sometimes three people to deal with - so how could one person care for Bernard effectively around the clock?

Independent Comment
Anyone who has a seriously disabling stroke would like to be able to look forward to an improvement in their faculties, but people in their late eighties in that position may be more prepared than some younger people to accept their condition with a degree of equanimity. What they or their relatives should never agree to is their being written off as hopeless cases for whom quality of life has ceased to have any meaning at all, writes Jef Smith.

Sadly, for older stroke victims like Bernard Dobson, extensive rehabilitation is not an option; but it was still a proper objective for health and social services to help him enjoy to the full his remaining powers in the later years of his life.

The cost of the package Bernard needed cannot, of course, be overlooked. To allocate such substantial resources to one person's care may have deprived others. But who could say that this was not money well spent? Cost-splitting in such situations remains absurdly ambiguous. 

There was little serious risk involved in Bernard's going home rather than into residential care. But Olive sounds like the ideal carer, with relevant work experience, immense energy, admirable determination, the capacity to accept and work with professional help and - critically important - the realism to acknowledge that the situation might have had to be reviewed if circumstances changed. Their bungalow and garden provided an almost purpose-designed environment for care. Inspired by these factors, practitioners like the technician and the domiciliary care workers pulled out all the stops. Full marks!

Jef Smith is writer, trainer and consultant in the care of older people