Neurological conditions: A guide to self-advocacy for people with long term neurological conditions

Written by: Ian Bone, Trustee, Fairway Advocacy

Ian describes the important role played by independent advocates in supporting people with neurological conditions.

The latest in our series of viewpoints on neurological conditions comes from Ian Bone, Trustee at Fairway Advocacy.  In the post Ian also describes a written guide produced to support independent advocates with support from the Self Management Impact Fund. 

Based upon Western European prevalence figures, approximately 100,000 Scots are affected by neurological illness. Many conditions are poorly understood by the public at large, often discriminated against and can manifest as an unseen disability (e.g. epilepsy, early multiple sclerosis) which may evoke less empathy than a visible impairment. Needs may be misunderstood and decisions, regarding life choices,  made by those in authority (e.g. social work, housing, employer, educator etc.) may be made without complete understanding of an individual’s condition and the specific challenges it causes. The role of Professional Independent Advocacy would normally be to support and guide persons, during the difficult periods of their lives, when balanced decisions, affecting wellbeing, are being made by those in authority.

Advocacy supports people who need a stronger voice to address health related issues by empowering them to express their needs, make their own decisions and protect their human rights. Independent Advocacy has been established in Scotland for over 20 years and statutory access is defined by The Mental Health (Care & Treatment) (Scotland) Act 2003 giving every person with a mental health or learning disorder a right to an independent advocate. The Act does not, however, cover those with neurological or other physical conditions for whom no statutory funding is available and access thus limited. The legal inconsistency, that conditions of the “mind” have statutory access but those of the “brain” have not, conflicts with scientific knowledge where the blurred boundary between both is accepted.  Recent estimates indicate that Scottish advocacy services see approximately 27,000 clients per year on a budget of £11 million, the vast majority of whom have mental health issues or learning disabilities and only a minority with physical long term conditions.

Given this gap in advocacy provision Fairway Advocacy, by means of a grant from the Scottish Government through the Health and Social Care Alliance Scotland’s Self Management Impact Fund, undertook to develop a written guide for those with long-term neurological conditions that could also be generalised to those with other physical impairments.

How was this done?

Rather than write a guide telling people what we thought people should know, we asked them what they wanted to know. This was done through 12 workshops involving more than 70 persons with a diverse range of neurological conditions. The concept of advocacy was explained and attendees provided circumstances in which they felt they might have benefited from it. This resulted in a number of scenarios that were developed and expanded. These scenarios, with changes made to ensure anonymity, were included in the guide as examples of how informed self-advocacy could bring about resolution. The initial consultation resulted in a draft which was presented at follow-up workshops for accuracy, readability and user value.

What information does the guide contain?

Included are:

  • An introduction to advocacy.
  • Blocks to success and the cognitive techniques to empower.
  • How to use the internet to retrieve and measure the value of information.
  • Communication skills.
  • Legal Acts encountered in workshop scenarios.
  • Ensuring that professionals see the wider ramifications of discussion made.
  • Preparing for and attending meetings
  • Stress management and confidence building.

The 13 scenarios discussed contain links to relevant legislation. There are also links to advice and guidance throughout the text that can be electronically accessed.

The guide can be accessed by clicking here or by visiting fairwayadvocacy.org.uk. Alternatively hard copy (free postage) can be obtained by contacting tim@fairwayadvocacy.org.uk

The success of the guide depends upon wide dissemination and comments. We look forward to feedback to modify any future editions. We can also provide workshops on the Guide’s development and usage. We hope the booklet will provide a valuable asset to users.

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