Background Patients who are diagnosed with MND begin a journey of change which affects the individual for the rest of their life. In South West Essex a monthly clinic has been set up enabling the patient and their carers to access a wide range of health professionals. The authors use a modified personal assessment tool as a structured way to discuss concerns.

Method Patients are asked to complete the tool in the waiting area with the assistance of their carer if needed. There are four parts of the tool: the distress thermometer (rates ‘total’ distress from 0 to 10), a list of problems which can be ticked, problems are then ranked (1–4) and finally, an action plan is agreed. The tool was given to all patients attending the clinic between November 2010 and April 2011.

Results 20 patients attended clinic over the 6 month period. 15 assessment tools were completed. 7/15 completed the distress thermometer (DT) with an average score of 5 (range 0–9). 3 patients completed a subsequent thermometer assessment. One score decreased from 9 to 8 and the other 2 scores increased (3–7 and 3–5). Numerous unmet needs were highlighted including: Worry, fear or anxiety 4/15, anger or frustration 4/15, breathing difficulties 4/15, and mobility issues 5/15. Examples of comments included worrying about “lack of independence” and “who will look after my dog”.

Discussion By using this tool we have allowed patients to identify unmet needs. Often the highlighted needs were not issues we would have explored previously as routine. The tool has been useful in initiating conversation around emotional issues. Another important outcome has been prompting onward referrals.

Conclusion The use of this tool has been successful in assessing unmet needs in a MND clinic.