Gina lives at a nursing home and has care and support needs relating to all aspects of daily living. She receives regular support from the staff throughout the day. Gina has advanced dementia and is unable to self-direct her care. She is reliant on the staff to interpret and provide care to meet her needs.

Gina’s social worker referred Gina for advocacy support with a review of her Care and Support Plan.

Lauren, a POhWER advocate, was allocated to support Gina as an Advocate under the Care Act. Prior to visiting Gina, Lauren spoke to the social worker and gathered a copy of Gina’s previous support plan which was now under review. Lauren read the support plan and noted the previous actions outlined within it.

Lauren arranged to visit Gina at the nursing home. Due to the advancement of the dementia, Gina was unable to instruct Lauren or tell her what her needs or wishes were. Lauren adopted a non-instructed approach and observed Gina’s interactions and environment while she was there. Lauren also spent time reading Gina’s care plans and notes and then discussed her support needs with a nurse on duty. From this, Lauren understood that professionals had given advice for Gina’s care staff to follow to ensure that her needs were met - Gina’s support notes showed that this information was not being followed.

There are multiple approaches to non-instructed advocacy, and these include (but are not limited to) the following approaches which Lauren uses while supporting Gina:

1. The rights-based approach, where the advocate works on the assumption that the individual would want their rights upheld even though they may not be aware of what they are.
2. The witness/observer approach, where the advocate observes the client’s behaviour in order to gain insights into what their preferences would likely be and how they choose to live their life.

Lauren could see that the recommendations from the previous care review had not been actioned. For example, it was recommended that Gina’s bedroom was personalised but there was only one personal photo in her room and none of her other belongings were visible.

Also, Gina had been diagnosed with a new health condition. Gina’s hospital passport was not fully completed and did not include any information on the new health condition. Lauren pointed this out to the nurse in charge and requested this was updated.

There was a Do not attempt cardiopulmonary resuscitation (DNACPR) in place for Gina. Gina was assessed as lacking capacity to make this decision, and she did not have family or an Independent Mental Capacity Advocate (IMCA) involved during the decision – in order to comply with the law an IMCA must be involved in DNACPR decisions where the person lacks capacity and is unbefriended.

Following Lauren’s visit, she:

• raised a safeguarding concern due to the homes failure to meet Gina’s support needs
• emailed the social worker to outline her concerns with the support offered
• wrote to the GP to request the DNACPR was reviewed with involvement of an IMCA
• contacted the Deprivation of Liberty Safeguards (DoLS) team to raise a concern that the client had no family involvement and there were concerns about the care they were receiving. And to find out the status of the DOL’s application that had been made by the nursing home. 

Lauren represented Gina at the support plan review with the social worker. She outlined her concerns that Gina’s support needs are not being met. The social worker provided the nursing home with an action plan and timeframe for improvement. Lauren carried out another visit to the home with the social worker at a later date and the improvements were being actioned.

A referral was made by Gina’s GP for an IMCA to review her DNARCPR and support the implementation of a ReSPECT form. The ReSPECT process creates personalised recommendations for a person’s clinical care including decisions such as DNACPR. The Dol’s team added Gina to the accelerated list and made a referral for an IMCA to complete a 39A report.

As Lauren is a fully trained independent advocate, skilled in all the statutory roles of advocacy, she took on this role. This was vital as Lauren was able to take the knowledge that she had gained and the relationship she had built up into the next phase of support.

A safeguarding investigation was carried out. During the investigation of the safeguarding concern, Gina was admitted to hospital. The hospital made a referral to POhWER for an IMCA to represent Gina for a Serious Medical Treatment decision. Lauren again took on this role.

Gina’s doctor decided to discharge her back to the nursing home on palliative care. Lauren challenged this due to the ongoing safeguarding investigation. Gina was placed in a new nursing home instead. Here her support needs are being met, and her room has been personalised to make it more homely for her.

A case such as Gina’s highlights the vital importance of the role of advocacy. Due to her circumstances, Gina was not in a position where she was aware of her rights, nor was she able to express her preferences as to how she wished to be cared for. In such situations, having someone in your corner, whose only interest is to ensure that all actions place you at the centre and that your best interests are always paramount, is vital. Sadly, we see instances such as DNACPRs being improperly applied for people quite frequently, and without an advocate to provide the necessary support people like Gina can easily fall through the cracks. Lauren was able to use non-instructed advocacy approaches to ensure that Gina received properly person-centred support as she entered palliative care, which no doubt is something we would all wish for our loved ones.