Social workers advise on a case in which a woman with mental and physical health problems is at risk of falling in her current accommodation
Susan,* 57, lives alone in a cottage owned by her mother. She has been diagnosed with multiple sclerosis and tardive dyskinesia, which involves involuntary, repetitive movements. She also has schizophrenia. Her MS is deteriorating.
She cannot walk unaided, or use a walking frame, so moves around by holding onto the furniture, walls, and rails. Susan can move from her chair to the commode but cannot use the stairs. Her friend Mike,* 39, has built her a bed downstairs. They met when they were using mental health services several years ago. He also manages the household.
Susan has short-term memory and cannot recall if she has fallen, though carers often find her on the floor. She has no prescribed medication and has a lifeline pendant.
She receives personal care in the mornings and evenings from an agency, which also provides cleaning and support with laundry.
Susan’s social worker has encouraged her to move but she is adamant she wants to stay and has capacity to decide where she lives.
The occupational therapist and care agency feel the property is unsuitable. Its floor is uneven, and there is a lack of equipment to safely transfer Susan into bed, with carers relying on Mike.
Mike has also been verbally abusive towards the OT, though the agency says he has been supportive.
The concerns are:
● The agency pulls out.
● Susan refuses to move and the social worker is held accountable if she has a fall.
● Susan is vulnerable to Mike.
*Names have been changed
The social worker view
Carl O’Riordan, social worker, Erewash disability team, Derbyshire Council
Susan’s rights, safety and aspirations demand consideration. She has the capacity, and thus the legal right to decide where she lives.
Susan’s safety and quality of life may significantly increase if she accepts more support at home. However, Susan may have understandable reasons to mistrust professionals. She may not appreciate her social worker encouraging her to move and investigating Mike if there is evidence of abuse. In addition, research suggests Susan’s tardive dyskinesia would almost certainly have been caused by antipsychotic medication previously used to treat her schizophrenia. Consequently, Susan may be fearful of taking medication to reduce the impact of her MS.
Workers should strive to build respectful relationships with both Susan and Mike, and offer co-ordinated options to increase Susan’s independence. A personal budget may give Susan flexible control of her support. The floor could be levelled, making it safer for her to walk and for equipment to be used. A falls assessment and physiotherapy may improve Susan’s mobility. A telecare falls sensor, a device similar to her lifeline pendant, could automatically alert carers whenever she has a fall.
If professionals work together, respond to Susan’s aspirations and treat her with utmost respect, she may reach decisions that make her safer, happier and more independent.
The manager’s view
Bev Capel, service manager, Erewash disability team, Derbyshire Council
I have visited many inaccessible properties during my career and it is rare to find one that canÕt be adapted. The occupational therapist and social worker are understandably anxious about the potential consequences of Susan remaining in her home. They feel accountable and a risk-averse approach is easy to adopt. However, personalisation re-establishes the responsibilities of disabled people. Although it may seem unwise, it is important that SusanÕs views are respected. In any case, there are many ways in which the OT can support Susan in reducing some of these risks.
It would seem that Susan and Mike do not trust care services and rebuilding this relationship is paramount. Susan needs to feel safe before she can discuss any worries she may have about her vulnerability to Mike. Mike may be feeling under pressure in his caring role and need an opportunity to voice any anxieties. The offer of a carers assessment may facilitate this.
Susan needs support to make informed decisions. The quality of communication in support planning will determine the level of choice and control afforded to Susan, and this will undoubtedly facilitate better outcomes for them both.
The user view
Simon Heng, disability writer and activist
Before surgery stabilised my condition, I spent years struggling with the gradual loss of my physical abilities. I even denied to myself that my condition was worsening, so the kind of assistance I would accept was inadequate, even dangerous to myself and my carers. If carers couldn’t cope, I would get angry, and blame them.
I was very frightened – faced with this situation, I challenge anyone not to be, for themselves or those they care for. This may explain Mike’s aggression towards the OT.
Eventually, I had to accept that my condition was getting worse, and my care would have to change.
Susan and Mike might need help to accept that current ways of doing things are becoming hazardous, and that, for her to retain any kind of independence or quality of life, SusanÕs support package needs to change.
Then it’s a question of resources. Does Susan need a wheelchair, or a hoist to help get her to bed? Are resources available to install a new floor and a stairlift, or a through-the-floor lift so she can access bathroom and bedroom? Does she need 24-hour care? Could she and Mike manage this through direct payments?
As for Susan’s vulnerability towards Mike, aren’t all severely disabled people vulnerable to their carers? Is there any particular reason for concern about Mike?
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Published in the 5 November 2009 issue of Community Care under the heading ‘Should we encourage our client to move?’