She won’t let us help her

Case study

Situation: Lil Scholes is a 72-year-old woman who lives alone. Her next-door neighbour called the local GP after seeing Lil in the garden seemingly in some pain and unable to move freely. A visiting district nurse contacted social services. A community care worker called and found Lil living in a corner of one room in the house; the other rooms were stockpiled with bags of rubbish and things that Lil had accumulated over years. She had just a chair which she sat and slept in. 

Problem: Lil, who is sharp-minded, was looking undernourished – her mobility problems had prevented her from doing her shopping. A friend who regularly collects her shopping with her on Thursdays was on holiday for two weeks. The community care worker offered a home care package until her friend returned home but Lil wanted nothing to do with social services, saying they weren’t going to put her in a home. The worker was worried about Lil’s health due to the state of the house as well as through lack of food. But Lil refused to go to hospital and refused to leave the house. He arranged for a psychogeriatrician to visit and he concluded that Lil would die if she wasn’t treated yet she continues to refuse to leave her house despite hours of attempting to persuade her.

Panel responses

Jackie Dawson
Unfortunately, I encounter cases like this and I find the best way to tackle these challenges is to adopt a team approach. Collaboration is a key aspect of community working.

Following referral but before visiting Lil, I would discuss the assessments made by the other team members. We would use the single assessment process – a single document used by social workers, nurses, physiotherapists and occupational therapists rather than numerous sets of notes – to track changes. As well as reducing duplication, single assessment performs the crucial task of encouraging older people to make informed choices about their care, through a partnership with various professionals.

Usually, in complex cases, I would jointly visit with a professional actively involved in Lil’s care. Undertaking such a visit would, I hope, enable Lil to feel more at ease to discuss her concerns during the assessment.

The deterioration in mobility and increasing pain levels suggest that Lil has potentially serious medical problems that need medical attention. For example, her symptoms suggest she might have experienced a fracture following a recent fall or have an infected leg ulcer. One additional but important consideration is the fact that urine and chest infections can cause a dramatic change in personality, which can have serious consequences if left untreated.

With Lil’s consent, I would check for the presence of any of these problems. Should any be evident, I would discuss with Lil, her family and her GP how we would manage them. Although Lil has already declined hospital admission, I would explain how her pain, particularly in the case of the fracture, could be alleviated and her mobility improved following hospital intervention.

My concern would also be to address Lil’s mood. She could be depressed due to her changing condition. If the community psychiatric team were not already involved I would refer to them for assessment. I would continually monitor Lil’s condition, providing a chance to build a rapport with Lil. Very often, once you have established rapport with the patient and won their trust, your explanations and suggestions are better received.

Mick Ryan
The situation is difficult because Lil has specific needs which remain unmet because of her own perception of what might happen to her if social services become involved. She is in need of medical attention and will die if she does not accept help. However, she doesn’t appear to have a mental illness.

There are legal interventions which could be considered. Action under the Mental Health Act 1983 appears not to be an option as she has already been assessed by a psychiatrist, who would have recommended further action if that was appropriate.

The other possible intervention is far more contentious: namely, the removal of Lil to hospital under the National Assistance Act 1948. This allows for health and social care staff to consider admitting vulnerable adults into supervised care against their wishes if certain conditions are met. Lil’s situation would appear to meet the criteria laid out in the act, which specifies that there must be a severe risk to health if no action is taken and also the presence of an unsanitary home environment. An appointed medical officer could recommend Lil’s removal.

There are, however, serious ethical dilemmas associated with this course of action. Where this intervention has been used in the past, often the person is merely being moved to die elsewhere. Deaths are common, partly due to the serious medical condition that leads to admission in the first place but also due to the shock of forcible admission.

Lil has made it clear that she does not wish to be treated and her human rights may be breached if she is taken away from home. On the other hand, if Lil’s condition and home environment are such that she will die in marked pain or discomfort, this could also influence any decision taken.

It is important given the dilemmas surrounding legal action that the social worker attempts to engage with Lil to try to establish a level of trust. Contacting the friend may also be helpful as they probably know Lil best and may give further information about her background and personality. If Lil is dying, then this work may allow at least some care to be delivered to alleviate the home conditions and to encourage acceptance of medical intervention short of removal to hospital.

User view

Lil’s choice not to accept social services support must be frustrating for all the professionals involved and potentially life-threatening for Lil, but she is exercising her rights, write members of Knowsley Older People’s Voice. 

Hours of trying to persuade Lil to accept help may have done more harm than good by cementing Lil’s view that she does not want support. Workers should try and help Lil to understand that care services exist to enable her to remain in her home rather than insist she is cared for elsewhere. 

The deterioration in Lil’s ability to cope on her own seems to have coincided with the loss of help from her friend, who is on holiday. This relationship could be the key to giving support to Lil, as the friend seems to be the one who has her trust. Maybe this friend hasn’t realised how dependent Lil has become. Maybe after returning from holiday, the friend could help convince Lil of the need to accept further help.  

In the meantime the priority must be to arrange for help with shopping so that Lil can begin to eat regularly and regain her strength and a routine she is comfortable with.  

Lil seems desperate to keep her independence and is adamant that she doesn’t want support from social services but there are others in the voluntary sector who could help with the shopping and possibly cook meals for her. Such help could lead to them developing a relationship with Lil, with a view to persuading her to accept further services in the near future. 

The state of the property is of obvious concern but at this stage any moves to further disturb Lil’s lifestyle could have adverse affects on her physical and mental health.  

Lil’s isolation may be one she chooses or one that has crept up with the loss of family or children moving to other towns. It may help, with Lil’s consent, to contact any relatives to see if they can provide any support; they may be unaware of her situation. 

Lil will require monitoring through a support network including the district nurse, social worker, her friend, and, if possible, family members. 

By members of Knowsley Older People’s Voice – an advocacy service run by older people for older people in Knowsley, Merseyside – with help from service users at St Mary’s day care centre in Halewood, Knowsley.