Peter has kidney stones in both of his kidneys, which are causing recurrent Urinary Tract Infections (UTIs). He is immobile and non-verbal because of tetraplegia (paralysis of all four limbs).

Peter’s urology team suggested that he should have surgery to remove the stones via a small puncture wound (up to about 1 cm) through the skin of the back, within three months.

Sam, a POhWER Independent Mental Capacity Advocate (IMCA), visited Peter at home to discuss the surgery.  Peter was unable to participate in a conversation with Sam and could not use signs or pictures or other communication methods that they tried.  It was necessary, therefore, for Sam to rely upon Peter’s carers.  The conversation took place with Sam involved and questions directed towards him and involving him.

As a result of this, Sam was able to establish that the following things would be suitable and reasonable adjustments for Peter if he were to go ahead with the surgery:

• An appointment later in the day (as he sleeps until 9am).
• Any music played in the background should not be classical or slow as this makes him feel sad - his favourite music is rock and roll.
• Pillows should not be provided as he has been known to eat them.
• He requires assistance with all acts of daily living, including eating and drinking.
• His diet has been set by the Speech and Language Therapist (SALT) – his food should be able to be mashed or broken down with pressure from a fork or spoon.
• He must have his wooden brick with him at all times as this is his comfort item.
• A carer who he is familiar/comfortable with will accompany him to offer reassurance.
• Chocolate is his favourite food and this may help to comfort him as he recovers in the hospital after the operation.

Sam wrote up his findings and sent them in a report to Peter’s urology team. Peter has now been given an appointment for the surgery, and the GP practice has been asked to review a ReSPECT form for him.

Sam’s support has ensured that Peter’s needs, likes and dislikes, and wellbeing have been taken into account so that the experience of having the surgery is as comfortable and stress-free as possible for him.