Practice Panel: Isolated woman with learning disabilities risks her health by overeating

Experts offer advice on supporting a learning disabled woman whose health is at risk because she will not leave her mother

SITUATION

Mary* is 40 years old. She has Down’s syndrome and learning disabilities. She lives in a rural area with her elderly and increasingly frail mother. While there has long been a co-dependence between them, it has become increasingly evident in recent years that they are no longer able to meet each other’s needs. While a care package is now in place for Mary, her mother refuses to receive any services for herself, despite a clear need for this. As a result, Mary continues to provide care for her mother.

PROBLEM

A major issue is Mary’s weight. This has been a problem for many years and several efforts have been made to address the problem without success. It is clear that Mary is able to eat to excess at home where her mother is powerless to prevent this.

Mary’s weight is now endangering her health. Her only real chance of controlling her weight would be for her to move into a supported setting where staff can support her around the clock to achieve this goal.

However, Mary has no intention of leaving her mother.

Mary is aware that she is overweight and has stated on numerous occasions that she would like to do something about this. Evidence suggests, however, that she is simply unable to make the necessary lifestyle changes while she remains at home with her mother.

All professionals involved agree that Mary lacks capacity to fully understand the health risks that her weight is posing.

*Name has been changed

Practitioner view

Rhys Bradley, social worker in Vale of Glamorgan

The issue of Mary’s capacity is central to this case, which the Mental Capacity Act 2005 prescribes should be assessed in relation to specific decisions. Mary certainly has the capacity to decide where she wants to live, but this choice is endangering her health.

This creates a major dilemma. While is could be argued that it would be in Mary’s ‘best interests’ to live in a supported environment, the act does not carry the power to enforce this.

The use of the Mental Health Act 1983 could be considered on the basis that Mary’s eating constitutes “seriously irresponsible conduct”. However, it is unlikely that this would be appropriate, especially given the prevalence of obesity in modern society.

Even if powers of compulsion were available, there would be a need to consider Mary’s right to family life and the potential harm of removing her from her mother against her will.

By refusing to accept support in her own right, it would appear that Mary’s mother is placing an inappropriate burden of care on her daughter while also making it impossible for her to consider alternative accommodation that might safeguard her health.

While a vulnerable adult herself, it could be argued that Mary’s mother is guilty of neglecting her daughter’s care. Such factors could provide sufficient basis for action under adult safeguarding procedures, although it is difficult to see what this would achieve other than identifying an ongoing need for case management, which has been unsuccessful to date.

Practitioner view

Trudy Burns, social worker in the community learning disability team in East Sussex

alancing the risks to both individuals against the potential impact of separation and transition are key considerations to any approach. Indicators of Mary’s self neglect and her mother’s neglect as main carer could be considered under safeguarding protocols.

The mother’s actions could be deemed to be ill-treatment or willful neglect under the Mental Capacity Act and an application to the Court of Protection could also be undertaken due to risk of significant harm.

Assessments of Mary and her mother’s mental capacity would need to be decision specific and ensure that they have been provided with relevant information to make decisions about their wants and needs. They may be assessed to have capacity about some elements of their lives but not others and they need to be allowed to make unwise decisions if they have capacity to do so.

For any decisions that they are deemed not to have capacity, a process of best interests decision-making could be followed with independent mental capacity advocacy.

A multi-disciplinary approach is critical and a meeting between professionals could be undertaken to agree a clear course of action, involving health professionals such as a GP and a community nurse who could provide support to assess current risks to Mary’s health.

Agreed actions and best interests decisions could be recorded through a health action planning process.

The approach would need to allow for alternative accommodation and support options to be explored but ensuring that Mary and her mother’s wishes are kept central to any interventions.

The user view

Nick Danagher, consultant, former director of the National Centre for Independent Living

It is in everyone’s interests these days that solutions to individual problems are user-led, effective in reducing disabled people’s marginalisation and provide local councils with an opportunity to invest in preventing higher-cost interventions further down the line.

Situations such as that of Mary and her mother can be improved by local councils facilitating the sharing of ideas between disabled people, most effectively through disabled people’s organisations, rather than purely through directly commissioned services.

A peer support group may engage Mary and her mum at the same time, engendering less suspicion when discussing possibilities and options than if they were being proposed by someone representing authority.

This way, Mary could learn about how other people with learning disabilities have used direct payments to get out and about, become more stimulated and active and feel better about themselves as they become more a part of their communities.

An individual budget for transport to be used jointly by Mary and her mother may reduce their isolation in a way that makes them feel less afraid of being separated.

Mary could use it to access universal services like a health and well-being clinic in a community centre with a café and other activities that Mary’s mum could use.

Rather than using someone to physically stop her from over-eating, new social networks may motivate and support Mary to change her lifestyle.

And you never know, after a while, Mary’s mother may begin to see that accepting outside help may strengthen, not jeopardise, her caring relationship with her daughter.

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