Brain-injured patients present services with complex problems. Although they often look physically healthy, this masks impaired brain function that puts them at risk, writes Mark Drinkwater.
PRACTITIONER Patti Simonson, head of social work, Royal Hospital for Neuro-disability.
FIELD Hospital social work.
LOCATION Putney, south-west London.
CLIENT Joan*, 46, a former alcoholic, lives alone.
CASE HISTORY Joan had a long history of drinking to excess. She was found collapsed in a public park incapacitated by alcohol and malnourished. It is suspected that she had sustained permanent brain damage, presumably from alcohol abuse.
RISK FACTOR Joan seems physically able, but she no longer has the cognitive capacity to live an independent life. She needs constant prompts, such as being reminded to take her medication.
DILEMMA Joan needs to move on from the hospital. The safe option is a residential care home, which would severely restrict her freedom. The alternative is for her to return to her flat. However, her limited capabilities might put her at risk.
OUTCOME With a comprehensive package of care in place, Joan can return to her former flat to live as “normal” a life as possible.
* Name has been changed
The Royal Hospital for Neuro-disability works with people with complex neurological disabilities. Patti Simonson, head of social work at the medical charity, recalls the case of Joan who had alcohol-related brain damage. “Prior to her admission, Joan had spent a brief period in a psychiatric hospital,” says Simonson. “She had been found collapsed in a park and was severely malnourished. Her memory was very poor.”
When Joan had dried out, she had no recollection of her past. “It was up to us to find out how much she could do for herself,” says Simonson. Part of the hospital’s role was to assess her capabilities and limitations. Joan did learn some simple tasks through repetition and prompts, such as handling small sums of money and going on short walks on her own to buy a newspaper.
But Joan’s brain damage was irreversible so she would never be able to do more composite tasks. It became obvious that she would need significant support if she were to return to a community setting.
“Once Joan had regained some physical fitness, we thought about where she should move on to,” says Simonson. One upside to the assessment period was that Joan said she had no intention of drinking alcohol again.
However, with limited options, finding appropriate supported accommodation can be tricky. One option was a residential care home. However, this would have been restrictive for someone so physically able. An alternative was for Joan to return to her original flat. But Simonson points out: “With freedom comes risk and vulnerability.” Aside from her forgetfulness, the risk was that she might be targeted by previous acquaintances seeking to exploit her.
In planning her permanent housing, they needed to consider how restrictive her environment needed to be. Making that decision was complicated, partly because Joan did not have the ability to plan for herself. There was little background information on Joan, because she had had little contact with her family in recent years. To ensure that the decision-making was robust, Simonson enlisted the help of an independent mental capacity advocate (IMCA). Because of Joan’s diminished ability to plan ahead, the advocate was able to help make some of the decisions for her.
These were informed by the Mental Capacity Act 2005, which emphasises that anything done on behalf of a person who lacks capacity should be the “least restrictive” of their basic rights and freedoms. Another key element of the legislation is that decisions should be made on behalf of a person in their “best interests”.
“Without an advocate, it’s difficult to be sure that you are doing something in someone’s ‘best interests’,” says Simonson.
It was decided that it was best for Joan to return to her original housing association flat where she could receive daily care from the provider’s floating support team. Further support was secured from a specialist head-injury service. The plan was for the care package to provide high levels of support initially, but for these to reduce gradually.
Simonson feels there were risks associated with maintaining Joan’s freedoms, but these were minimised by providing adequate support. “It’s always difficult balancing issues of safety with those of liberty,” Simonson says. “In this case, I’m confident we got the balance right.”
Arguments for taking the risk
● Desire to give up alcohol: Joan is physically able and says she does not want to drink alcohol again.
● Regained skills: She has regained some skills and routines in the safe environment of the hospital.
● Decisions made in Joan’s best interests: The decision-making for Joan’s move was well planned and guided by legislation. The independent mental capacity advocate ensured that her best interests were considered.
● High levels of support: Risks are minimised by ensuring that high levels of support are in place at the start with a view to gradually reducing these when a stable routine is established.
Arguments against taking the risk
● Danger of getting lost: Joan can walk long distances but if she wanders far from her flat unaccompanied, she would not be able to find her way home.
● May return to previous lifestyle: The nature of her condition means there is always the possibility that she might revert to her former lifestyle. Staff can never be sure she will not return to drinking alcohol or that her former drinking acquaintances might seek her out.
● What if support is withdrawn?: Currently she has adequate support, but what if these are withdrawn in the future?
Independent comment by Dorian Davies, project lead for the Mental Capacity Act at South London and Maudsley NHS Foundation Trust
Risk assessment and management are often associated with a need to minimise the risk for both service user and practitioner.
The complexity of risk management and decision-making in this case is compounded by the impairment of Joan’s mental capacity, but the case shows the benefit of the decision-making process set out in the Mental Capacity Act 2005.
This case is an example of the concept of “best interests decision-making”. The safe option of residential care might achieve a low-risk outcome for Joan and the professionals responsible for planning her care but at the expense of failing to meet Joan’s wider best interests.
The involvement of the independent mental capacity advocate ensures that Joan is represented in discussions. Although the advocate cannot make decisions on Joan’s behalf, they support and represent her in the process.
In this case, the balance between Joan’s safety and liberty was achieved by promoting her best interests as an individual, even where those interests involve an inherent risk. With a responsible attitude towards capacity assessment and by following the best interests checklist, the risk can be managed while achieving a lifestyle appropriate for Joan’s age and physical health.
This article is published in the 11 June issue of Community Care magazine under the heading Balancing safety and liberty