A case for independent advocacy for long term neurological conditions

22 July 2014

“The Scottish Government’s policy is, and will remain, that independent advocacy should be available to all who need it.”  Shona Robison MSP, Minister for Public Health (Scotland), May 2008

 

Independent advocacy enables people who need a stronger voice.  It helps them to express their own needs and make their own decisions.  It safeguards people who are vulnerable and feel discriminated against. Independent Advocates help people get the information they need so they can make real choices about their circumstances.

 

Independent Advocacy supports people to:

  • Express their views, wishes and concerns
  • Access information and services
  • Defend and promote their rights and responsibilities
  • Explore choices and options
  • Speak on behalf of people who are unable to do so for themselves.
  • Empower those in need of advocacy concerning present issues to develop the skills and confidence to advocate for themselves when addressing future issues

Independent Advocacy services have been available for over 20 years in Scotland predominantly being provided to people with a learning disability or mental health problems.  But what about those with an acquired brain injury?

 

Since 2003 NHS Boards and local authorities have been required to produce a regularly updated Advocacy Development Plan, and updated advocacy plans to identify needs and gaps in services were introduced in 2010. These advocacy plans focused on prioritising access in line with statutory requirements.  Having reviewed these plans we found that physical disability was identified a service gap in all plans.  Many highlighted the need for advocacy for those with “communication difficulties” or “sensory impairments” but defined neither, whilst others spoke in generality recommending “a generic service accessible to those most in need and most vulnerable to risk of harm”.

 

The Scottish Independent Advocacy Alliance (SIAA) Map of Advocacy across Scotland (2011-12) highlights the lack of advocacy provision for those with physical, including neurological disabilities.  The existing range of legislation around independent advocacy, including the Mental Health (Care & Treatment) (Scotland) Act 2003, limits access despite an evident increased demand.

 

Informal discussion with a number of advocacy services throughout Scotland has identified some groups advocating on behalf of those with neurological conditions such as traumatic brain injury and stroke.  However, numbers seen are small and people have to “wait in line” until those with a statutory right are seen no matter how pressing their need might be.  In summary, current provision is minimal and not always timely.

 

At Fairway Advocacy, we believe that the rigid distinction between conditions of the mind (psychiatric) and those of the brain (neurological) is no longer tenable.  Modern imaging techniques have shown the biological basis of many mental health conditions and the behavioural and mental health consequences of brain injury are universally accepted.  The time is right for legislators to acknowledge that the brain and the mind are one of the same and that to provide statutory access to one and not the other is illogical.

 

Fairway Advocacy was established in May 2013 with the aim of delivering a pilot of independent advocacy for those with neurological conditions thus filling the gap identified in Health Board Advocacy Plans and by the SIAA Map of Advocacy.  Fairway has canvassed widely amongst organisations and their service users and has demonstrated a clear need. On this evidence we have been granted funding for 2014/5 to provide services in West Central Scotland.

 

Uniquely, we have both personal and professional knowledge of neurological conditions and are the only advocacy organisation nationally to have this specific remit.  We hope to act as an exemplar for future services and believe that current legislation surrounding statutory access needs to be reviewed.

 

Mhairi Coutts, Chairperson, Fairway Advocacy

Professor Ian Bone, Director, Fairway Advocacy