Providing a named contact from whom people can get information

Providing information should be everyone’s responsibility (see Section one: Organising information) and all those health and social care professionals who come into contact with people affected by neurological conditions should take opportunities to assess information needs, provide information and answer questions as fully as possible referring to others when required. However, people with long-term conditions who receive care from a multi-disciplinary team do find it useful to have a single point of contact for information and advice. People usually want a single point of contact with a specialist who understands their condition.

This requirement could be met in a number of ways:

  • Where a disease specific specialist nurse is in post, it is likely to fall comfortably within their remit at diagnosis.
  • For those who have a care plan, their care coordinator or manager would probably act as their key point of contact.
  • For people who are undiagnosed or who do not have access to a specialist nurse, there will be a need to consider how their needs for information can be met, perhaps via a single point of contact such as a social worker, community physiotherapist, practice nurse, assistant practitioner with skills in information provision.

The main issue is to ensure that people know who they can contact for information about their care and for information about local services and how to access them. It is important that the contact person knows about the condition that the person has been diagnosed with (if they have a diagnosis) and their symptoms. It is also important that contact can be immediate. If people have to make an appointment to ask a question this may be off-putting and important issues could be missed.

This should not be confined to post-diagnosis as many people with neurological and other long-term conditions live for many years with symptoms and signs of their condition and consequences such as severe pain, without getting a clear diagnosis.

The necessary skills required for someone acting as a named contact are likely to include:

  • Knowledge of how to source information
  • Skills in communication of information
  • IT skills
  • The ability to work as partners with people affected by neurological conditions
  • Understanding of cultural and disability issues
  • Signposting skills
  • Knowledge about accessing support such as translation and interpreting services
  • Knowledge of different formats of delivery and how to make information available in different formats

The Skills for Health Competence Framework for Long-term Conditions Case Management – Community Matrons is also useful in setting out the skills required.

Some of the literature on key workers is relevant to providing a named contact. Work conducted by the Joseph Rowntree Foundation concluded that the matching of a key worker to an individual should take into account the following factors:

  • Geographic location
  • Case load of the professional
  • Matching the skills and expertise of the professionals to the needs of the person
  • The personal preference of the individual and their carers – they should be consulted about who their key worker is and have their views taken into consideration wherever possible

This study also found that the distinguishing features of “good key workers” were:

  • Proactive contact
  • A supportive open relationship
  • A holistic (family-centred) approach
  • Being able to work across agencies

Finally, it was concluded that key workers needed protected time to carry out this role and that they also needed ongoing supervision and training to carry out the key working role.