A patient and carer information strategy

A strategy on “patient” information will need to identify:

Who leads on information policy?
Who provides information to individuals
Training
Resources
How the policy or strategy will be monitored including audit and quality standards
When the strategy is reviewed

Who leads on information policy?
In order to ensure that information is given the priority that it warrants, and to ensure that it is fully integrated into the work of the department, team or practice, the lead role in information should be given to someone senior in the department. It is equally important, however, that the person who takes the lead role has some dedicated time to carry out this role and an interest to ensure that some priority is given. The roles that will be carried out, or overseen, by the person identified include:

  • writing or adopting a policy on information and getting it agreed in the department (the Patient Information Forum – PiF – may be able to provide examples of information policies).
  • regularly monitoring the policy.
  • ensuring that staff have appropriate training to fulfil the policy.
  • ensuring that information stored or used by the department or team is up to date and available.
  • liaising with patient information leads in the Trust or PCT.
  • maintaining links with local voluntary organisations who provide information resources and support.

There may be a range of different people who would perform these roles, depending on the organisation and local circumstances. Some examples might be:

  • manager of department
  • senior or specialist nurse
  • community matron
  • practice manager
  • practice nurse
  • manager / director for physical and sensory disability in social care

Who provides information to individuals?
While everyone with a neurological condition should have a named point of contact for advice and information (NSF quality requirement one; Providing a named contact  ), providing information to people affected by neurological conditions is the responsibility of all health and social care professionals that they come into contact with.

Every consultation should be seen as an opportunity to seek out and respond to concerns or requests for specific information. This does not mean that every health and social care professional should know about everything, but it is important to:

  • ask the person what information they need;
  • note the concern or information request; and
  • ensure that the person is provided with the contact details of an organisation or person who may be able to help.

This may mean referring to someone else in the team, the person’s key contact or it may be an external organisation or resource. Many of the good sources of advice and information required can be found in this toolkit.

Training
Training related to information provision should be part of Continuous Professional Development (CPD) programmes. The most important areas to consider are:

  • Communication skills, particularly relating to people with cognitive difficulties, aphasia, dysarthria, hearing and sight problems and communicating with people who do not speak English as their first language.
  • Training that enables health and social care professionals to acquire the competencies outlined in the Skills for Health Neurological Workforce Competence LTCN3 – Provide information to individuals with neurological conditions.

In summary these are to:

  • enable the individual to express their requirements for information, and explain clearly the type of information that can be provided;
  • discuss the amount, type, and sources of information which the individual has accessed;
  • identify relevant sources of information and information resources that the individual can access to increase their understanding of their condition and to make informed choices;
  • identify other practitioners who are able to provide support and information if necessary or requested by the individual;
  • establish the amount of information that the individual is likely to be able to deal with at any one time;
  • provide information that is relevant to the individual’s needs, and ensure it is as accurate as possible within the context of what is known about their condition;
  • use a range of information giving methods to present information to assist the individual’s understanding;
  • provide sufficient time for the individual to reflect on what has been said, and if necessary repeat it;
  • provide opportunities for the individual to clarify any information, and enable them to ask questions; and
  • answer any questions raised by the individual, and refer any questions that cannot be answered to the appropriate sources of information.

The other relevant Skills for Health competence framework is that for Long-term Conditions Case Management - Community Matrons.

Sources of information about training in health information related issues include:

  • The Patient Information Forum www.pifonline.org.uk
  • Health Promotion Units, Public Health Information Services and health libraries around the country which offer a variety of expert training to health and social care professionals to help them assess and access evidence-based information.

Resources
The most precious and probably most expensive resource involved in providing information well is staff. As outlined above, meeting information needs should be the responsibility of everybody, but within a department or team it is also important to identify someone:

  • to lead on implementing the information policy
  • to monitor and audit the policy
  • to source information
  • to be the information resource person / librarian
  • to ensure information is up to date, appropriate and available
  • to evaluate the effectiveness of the information used – what do people affected by neurological conditions think of information given and how do they act on it?
  • to work on the production of information materials (if team / department decides to go down this route)

This does not have to be same person and tasks could be shared out within a team.

It is important to ensure access to training for those people taking on the above roles and for all staff to be able to access training to achieve the Long-term Neurological Conditions (LTNC) competencies outlined above.

In order to ensure that diverse information and particular information needs can be met it will be important to identify a budget. This will enable the department to:

  • train staff in information provision roles and communication skills;
  • buy information booklets and other materials from the voluntary sector, who usually need to charge, and commercial producers, where they are meeting particular needs;
  • produce their own information. Note: you should consider carefully whether you need to produce your own information. Please see checklist for producing information.

People affected by neurological conditions, including local voluntary and support groups and expert patient groups, are an invaluable resource and can contribute considerably to all the above activities including reviewing the appropriateness of information resources and the way that information given. To contact a local support group you could try the Neurological Alliance website www.neural.org.uk and look under member organisations for national organisations that will list local groups. There are also regional neurological alliances listed here. The Long-term Medical Conditions Alliance www.lmca.org.uk also lists its members many of whom are national voluntary organisations with local branches.

How the policy will be monitored including audit and quality standards

  • An audit of patients’ notes can monitor whether information needs have been assessed as part of care planning and regularly reviewed as part of that process.

    • A survey of patients and carers could also help to monitor whether information is meeting needs, though the  national patient surveys and data may already be covering this to some extent.

    • An annual audit of all information materials held in the department should be carried out to ensure that information is up to date and relevant. This will involve all members of the multi-disciplinary team as all may have an interest in different aspects of the information (e.g. the doctors may be aware that some advice on medication is out of date, the specialist nurse may want to change something about the after-care advice or notice that the local support group details are out of date, an administrator may notice that the contact telephone numbers or opening hours have changed).

    • If the information policy includes a commitment to provide information in the top five languages spoken locally, this will need to be audited annually, particularly in an area with high mobility of population.

    • An annual audit of training attended or competencies achieved in the area of communication and information could be conducted. This will probably form part of the routine appraisals of individuals, but a team may want to ensure that they have the collective knowledge and skills to meet the information needs of their clients. See Annual Audit of Information Provision. 

When the policy is reviewed
 It is probably realistic to review the information policy every two – three years. Though an audit should be carried out annually to ensure that it is being implemented.