Carol's Story

Continuity of advocate


Carol is an adult with a diagnosis of autism and severe learning disability. Her care and support needs are complex and requires skilled staff to use specific approaches and to anticipate all her needs.

Carol had a period of ill health where there had been rapid weight loss. The initial IMCA Serious Medical Treatment {SMT) referral was received from the hospital as decisions were being made about possible investigations and treatment. Carol was not coping well with being in the hospital and there was concern about her whilst further investigations took place.

This was the first of five IMCA SMT referrals for Carol. Subsequent referrals were made by different health professionals relating to specific medical decisions regarding on-going investigations to establish the reason for the weight loss.

How we helped

Carol has limited verbal communication and understanding around her care and support needs. The advocate used a non-instructed approach which included gaining background information from the staff who support Carol on a day to day basis and know her well.

For each IMCA SMT decision and referral received the advocate ensured the decision makers were acting in accordance to the Mental Capacity Act. This included making sure all decisions were being made in Carol’ best interests, that the least restrictive options were fully explored and that all relevant professionals such as the Learning Disability Specialist Nurse and carers were part of the decision-making process.

Some proposed investigations would have caused Carol a lot of distress and anxiety, so discussions took place around using sedation or general anaesthesia. The advocate requested that the medical professionals liaised with each other to establish if several procedures could take place at the same time to avoid Carol having to attend hospital more than was necessary.

Other reasonable adjustments were also requested including the provision of a side room for Carol, scheduling her first on the surgeons list so that she didn’t have to wait and ensuring the staff she knows were with her throughout.


Carol is currently doing well. By having the same advocate for all IMCA referrals we were able to ensure that Carol received advocacy support from someone who understood her history, had knowledge of her needs and who had established a positive working relationship with the range of professionals involved.