Effectively providing relevant information to people at diagnosis and throughout the care pathway

Effectively providing relevant information to people at diagnosis and throughout the care pathway

  • In most cases verbal information should be backed up with written information. This should be in the form of a leaflet, or other resource, if available. There are a range of leaflets available to download on most neurological conditions. Some material is written specifically for carers and family members.
  • As a minimum a letter can be written to the GP summarising the information given and any contact details provided as follow up sources of information and support, and this should be copied to the patient.
  • When a question can not be addressed there and then, some provision should be made for following up – either by referring the person to a reliable source or by undertaking to get back to them with an answer or further source of information.
  • It is important to check that people have understood information given to them verbally. Best practice is to ask people to tell you what they have understood.
  • People should be given a point of contact – someone with whom they can check any questions or issues that may arise after the consultation. It is also good practice to provide an opportunity for people to return in a few days, particularly after a diagnosis, and speak to a specialist nurse or other professional who can answer any questions they, or their carers, have.

Communication
 Principles of good communication can be found in a variety of documents e.g. NICE MS Guideline and Parkinson’s Disease Guideline, National Information Forum. We have prepared a summary checklist.

Breaking bad news
 Communicating bad news to patients is difficult for professionals for the following reasons:

  • fear of doing it badly
  • fear of unleashing strong emotions in the patient
  • fear of getting blamed for the news
  • fear of having failed the patient medically
  • being reminded of one’s own mortality
  • perceived lack of time.

The principles of good communication basically still apply in these circumstances, though ensuring privacy and adequate time are even more important.

The main points to consider are:

  • the setting
  • finding out what the person already knows or suspects
  • finding out how much more they want to know
  • firing a warning shot (giving some warning that you have bad news to tell them)
  • providing information in stages
  • gauging after each stage whether the person has understood and wants more information
  • acknowledging, and responding to, the person’s reaction to the news
    making arrangements for follow up

(With thanks to Dr Richard Sloan, Medical Director, Joseph Weld Hospice, Dorchester, Dorset) 

The Motor Neurone Disease Association provide guidance for communicating and information giving before, at and following diagnosis. They have also produced Evidence Based Clinical Guidelines on Making and Communicating the Diagnosis in MND.

Communicating with people who have communication difficulties
Communicating with people who have aphasia following stroke or other brain injury requires careful preparation. We have prepared a summary of these. Also Speakablility produce a number of publications on communication with people who have aphasia.

If people have particular problems with communication there is a range of guidance available.

The RNID produces a lot of information about communicating with people who are deaf or hard of hearing including communication tips. 

The RNIB produce guidance on making written and audio information accessible to people who have sight problems. 

Communication Matters have guidance on communicating with someone who is using augmentative or alternative forms of communication see:

Everyone needs to communicate

How to be a good listener

How to be a good listener (PDF) 

Use of prompts or suggested questions
People may find it useful to be given some questions to ask. These can act as prompts and also “give permission” for patients to ask questions. They can also help make the best use of a consultation. The Department of Health are developing some core “questions to ask” [give details and link when available]. The Neurological Alliance booklet Getting the Best from Neurological Services also has questions to ask at various stages.

The Best Treatments site (patient section) also has some suggested “questions to ask your doctor” specific to conditions.

Providing information throughout the care pathway
People’s information needs may change depending on where they are on a care pathway, as they become more knowledgeable about their condition and as they become more or less dependent or frail.

At diagnosis or onset of symptoms
 Information should be given about the following issues:

  • general information about the condition
  • how to manage symptoms
  • possible treatments (if any)
  • possible course of the condition (recognising that it is not always predictable)
  • physical symptoms to expect and those to be concerned about
    information on exercise and diet (if relevant for condition)
  • any key safety/legislation issues (e.g. driving, bathing)
  • information for family and carers (and to help explain to carers and family).

It is important to give written information to support a verbal explanation as people may miss part of the explanation if they are distressed or anxious.

In addition, any questions that people raise should be answered as fully as possible or an alternative source of information provided. People are often concerned about “social” issues such as giving up work and financial support at diagnosis or very soon afterwards.

Following diagnosis or onset (and reviewed on a regular basis)

After diagnosis people should be provided with some information, as appropriate, covering the following issues. This will need “topping up” in any future consultations:

  • a general explanation of the condition
  • any research trials that they might participate in
  • treatment options
  • symptoms and managing them
  • prognosis
  • physiotherapy, speech and language therapy
  • complementary therapy
  • nutritional advice
  • health and fitness
  • emotional changes
  • local services providers and what they provide (seelocal information template)
  • local support groups
  • relevant local or national charities
  • aids and equipment that they might need or could benefit them
  • communicating about the condition with others (friends, workplace)
  • leisure activities