This discussion paper sets out the wide range of issues that might give rise to an advocacy case being defined as a ‘complex case’ drawing on academic research, advocacy casework in action and a recent training pack commissioned by OPAAL from Dorset Advocacy (2016) on complex cases.

Some of the issues discussed here pertain particularly to cancer advocacy service delivery, though many apply to generic older people’s advocacy too.  This discussion paper is intended to help you think about the range in the complexity of advocacy cases you support people with, as we’ve found this can help with making the case for cancer advocacy, and can help in identifying advocacy cases that make persuasive casestudies, which we later used in the COPA programme as the basis of social return on investment analysis.

Cases with more than one issue

Currently OPAAL are defining as ‘complex’ cases where there are three or more issues, and partners are reporting that complex cases are on the rise.

In cases where there are multiple issues it can be a key function of the advocacy partnership to spend time supporting the advocacy partner to explore these issues with a view to trying to prioritise them.

Case example:

June (68 years old) has been supported by peer advocate Michael with six advocacy issues 1) support to access information, 2) isolation, 3) liaison with health professionals, 4) emotional support 5) housing and 6) benefits

Cases with problems and dilemmas (can also be cases that draw on a lot of advocacy time)

Donnison (2009) talks about advocacy dilemmas and suggests this advocacy casework might best be defined as advocacy ‘on the hoof’ – where the advocate must pick a path through dilemmas requiring them to pay close attention to advocacy principles.

Donnison (2009) includes in this definition of dilemmas working with clients who present with challenging behaviours, clients who make a big call on the advocate’s time, cases where there is a conflict of interest, and cases where the casework involves wishes around euthanasia and/or complex end of life issues.  OPAAL would add to this list of topics casework involving support to make unwise decisions, safeguarding vulnerable adults, treatment decisions, casework involving court processes and supporting clients with grief and loss.

Some of these cases can also be cases that take a long time or require more resource by virtue of the complex statutory systems they are engaged with, for example cases involving court processes or cases where the advocate is challenging statutory decisions on behalf of and/or with their advocacy partner.

Supporting advocacy partners with high support needs

Cases might be defined as complex when the person needs a lot of support.  This might be because they don’t communicate with words or they might have significant barriers to communication.  This could include people whose first language is not English, people who have learning disabilities, cognitive, physical and sensory impairment, people with autism or mental health needs, or those with fluctuating capacity.  This could also include people with hidden disabilities, who can need more support to access services and experience barriers to accessing information and support.

Advocacy support might be needed to access materials in other formats, to explore options using talking mats, to explain treatment options in easy read formats and to challenge practice where professionals are not investing time to fully involve the person in their care and support.

People who are hard to engage, who disengage

Sometimes cases can present as complex because there are barriers to engaging advocacy partners or difficulties achieving what the individual hopes for.  It’s not uncommon for advocates to work with older people who are hard to engage or who have disengaged and might need support to re-engage.

This can include working with older people who have a chaotic lifestyle so here we might be working with someone who is affected by cancer and is also having issues maintaining a tenancy, addiction, severe mental health issues, who may be living on the fringes, homeless or who can’t access support due to aggressive behaviour.

There can be issues affecting engagement including institutional barriers, attitudes of professionals towards advocacy, conflicts within the family, possibility of coercion by family or others.

Isolation can impact on engagement with services.  As well as the challenges that social isolation presents in accessing services, physical isolation can prevent engagement.  So too can being in a caring role and not having access to respite or other support services to enable the carer to be able to fully engage with advocacy support.

As was discussed recently by COPA members, the advocate often goes the ‘extra mile’ to maintain engagement, something other services don’t tend to do.  This can mean anything from providing transport to hospital appointments, to supporting the person to re-engage with services that they have been declined access to because of frequent missed appointments or aggressive behaviour.

References:

Donnison D. (2009) Speaking to Power (Bristol: Policy Press)

Dorset Advocacy (2016) Complex Cases Training (commissioned by OPAAL UK, delivered to COPA partner projects Feb 2016)