Professionals offer advice on a case involving a man who has become disabled after an accident and wants to return home
Dougal*, 28, sustained a spinal cord injury three years ago in an accident instigated by his wife. Since discharge from hospital, Dougal’s disruptive behaviour has resulted in evictions from a succession of increasingly costly care homes.
Dougal imminently faces eviction from a specialist nursing home and ostensibly wishes to live in the community with his wife, in unusually risky circumstances.
Dougal requires the assistance of a qualified nurse for two hours each day, due to complex bowel needs and a necrotic pressure sore. He habitually ignores advice that his pressure sore will deteriorate if he spends longer than three hours out of bed each day.
During care planning discussions, Dougal demands that his wife will meet all of his care needs when he returns home.
She appears frightened and will not contradict him. Dougal insists that he will spend all day in his wheelchair, he will not use a pressure relieving mattress and he will not accept any formal support, except for a morning call from a district nurse.
The primary care trust has insufficient district nurses to meet Dougal’s needs in the community, yet maintains he is ineligible for continuing care funding.
Dougal’s social worker suspects that Dougal lacks the mental capacity to decide to return home, that he may have a personality disorder and that he is punishing his wife.
Dougal refuses to speak to professionals and he does not have a diagnosed mental disorder.
Nursing staff predict that Dougal will become perilously unwell within two weeks if he returns home.
*Name has been changed
THE PRACTITIONER VIEW
Carl O’Riordan, social worker, Derbyshire Council adult care
Dougal has much to feel angry about. Following the accident he abruptly forfeited many roles and expectations.
Non-compliance with treatment and multiple evictions suggest that he remains dangerously ill, taking into account his impairments.
Dougal understandably wishes to regain key elements of his previous life, including returning home and sharing an ordinary bed with his wife.
I would strive to offer Dougal and his wife more time, information and options. The nursing home may agree to delay Dougal’s eviction, especially given their understanding of his perilous intent.
I would negotiate with the primary care trust and ensure Dougal is offered flexible options for support, which may include nurses from a private agency, direct payments and peer support.
Independently from Dougal, his wife should be offered a carer’s assessment and, ideally, have a trial run caring for Dougal in the nursing home, using the equipment and routine that he plans to follow at home.
If Dougal remains resolute, and his wife unempowered, his situation pivots on whether he has the mental capacity to make these recklessly unwise decisions.
If he does, the Mental Capacity Act 2005 gives him the legal right to act as he chooses.
For Dougal to be deemed lacking capacity, he must have a mental disorder and be unable to comprehend the risks.
He may then be prevented from returning home using the deprivation of liberty safeguards, following assessments by a best interests assessor and a mental health doctor.
Given Dougal’s refusal to engage with mental health professionals, his case may need to be referred to the Court of Protection for an urgent ruling.
THE MANAGER’S VIEW
Julie Heath, area manager, Derbyshire Council adult care
This is a tragic situation for both Dougal and his wife; he has lost so much that was important to him, and she has to live with the guilt of contributing to his becoming disabled and the impact upon her everyday life.
Dougal appears to be in denial about his disability and may benefit from peer counselling which could be provided by his nearest Centre for Inclusive Living.
It may be advantageous to have access to an advocate as he gets angry when dealing with different agencies.
His negative behaviour may act as a barrier and result in him being discounted by some professionals which could well result in reduced options for him.
A carer’s assessment is crucial to an understanding of his wife’s needs and wishes. She needs a clear understanding of any expectations of a caring role.
She may find it easier to undertake the assessment with a worker who is independent of co-ordinating Dougal’s support.
The conversation with her needs to be open and honest; if Dougal returns home with minimal support she will be under immense pressure.
Such circumstances can lead to carer breakdown or safeguarding procedures being invoked; either would result in poor outcomes for Dougal and his wife.
They may benefit from relationship counselling as their relationship could have been significantly altered by his accident.
The danger will be if Dougal chooses not to engage and returns home without appropriate support.
This may result in hospitalisation which will be a further detriment to his well-being and will not produce satisfactory outcomes for both.
This is an intricate set of circumstances which requires sensitive handling so that Dougal can be engaged.
THE SERVICE USER VIEW
Simon Heng, wheelchair user and disability activist
When I became disabled, the first thing that hit me was that I had lost most of my civil rights – the right to choose where I lived, when I got up and went to bed: about where I went and who I socialised with.
I lost my job and with it my financial independence. I couldn’t even choose who performed the most intimate parts of my personal care.
Sometimes, it wasn’t pleasant to be near me if you were a professional. I lashed out, particularly against the health and care workers who seemed to be the ones blocking my way to freedom.
Up to a point, it was true: if I hadn’t fought for as long and as hard as I did, I wouldn’t have ended up with the right combination of housing and care that I have now.
The trick was in knowing when to fight the battles, and when to accept the advice and care on offer.
Even after three years, it seems that Dougal doesn’t really appreciate the amount of care he’s going to need at home, and how much he’s going to have to take on board experienced health advice, if he is to be healthy and survive.
He needs to know that pressure sores can kill -that was how Christopher Reeve died – and he needs to appreciate that his wife can’t do it all, however much he wants that to happen.
I just wish that Dougal could speak to somebody, like myself, who had been through the process, and emerged (relatively) successfully: maybe then he could stop punishing himself and everyone around him, and start planning a positive future.
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This article is published in the 18 November 2010 edition of Community Care under the headline “Returning home could be disastrous”