Appendix

Case studies of advocacy support

Community advocacy

The person contacted an advocate because they were finding it difficult to access counselling for his mental health. The advocate worked with the person to self-refer to the NHS Wellbeing Service and attended his initial assessment appointment with the service. The Wellbeing Service would not accept his self-referral because he was self-harming, and the staff member suggested that his mental health issues were due to being autistic. The advocate supported the person to speak to his GP and get a referral to the Assessment and Treatment Service instead, but this referral was rejected because he did not meet the threshold for this service, and it was suggested he access private therapy instead. The advocate worked with the person to get his GP to refer him to the Wellbeing Service and for the GP to also make clear their support for this. After a further meeting with the Wellbeing Service, the person was accepted into the service and spoke about how helpful advocacy had been in dealing with the barriers to getting support.

Community advocacy

The person contacted an advocate after a recent review of their Adult Social Care support plan. They are autistic and originally sought social care support because they were struggling to live independently. They had moved out of the supported living service they were in because of the effect it had on their sensory needs and negative experiences of sharing spaces. The outcome of the recent support plan review was that they should stay in supported living, which the person wanted to challenge. The advocate supported the person with a meeting to review their support plan and had supported them to make clear what they needed to ensure the meeting with the social worker accessible for them. The social worker agreed with them that supported living was not suitable and agreed to the person’s request for PA support and help towards living independently in a self-contained property.

Independent Mental Capacity Advocacy (IMCA)

The IMCA supported someone with a change of accommodation decision. The Person had a learning disability and had been diagnosed with a rare degenerative condition after being admitted to hospital. The IMCA had worked with the person before on another issue so was able to tailor their communication to the person’s specific needs. The person had previously been living at home with her partner and wanted to return home but a best interests meeting established she needed to move to a residential placement. The IMCA was aware of the only placement being discussed for the person and was able to explain why the layout of the service would not meet her needs and would mean she missed out on social interactions. An alternative placement that would meet her needs was identified instead. 

Relevant Person Paid Representative (RPPR) Service

The person had a severe brain injury after a routine operation. He was in a nursing home and spent most of his day in bed, and had limited communication. He was being given antipsychotic medication to keep him calm and had 24 hour one-to-one support. The plan after he left hospital had been for rehabilitation but he had been in the nursing home for 10 months. He was asleep a lot of the time the RPPR visited, but by reviewing his notes and how he was behaving the RPPR felt he was clearly objecting to his placement. The staff at the nursing home also felt there could be a place that could better support him. The RPPR contacted the person’s social worker and pressed for alternative rehabilitation placements to be found. When there had been no progress on this, the RPPR explained to the social worker that an application to the Court of Protection would need to be made. The person was moved to a nursing home that specialises in brain injuries and offers rehabilitation. It is also nearer the person’s family.

Relevant Person Paid Representative (RPPR) Service

The RPPR met with a person living at residential home who was under a Deprivation of Liberty Safeguard (DoLS). She has advanced dementia with limited verbal communication and does not seem to be objecting to being at the residential home. The RPPR spoke to staff and looked at the person’s bedroom to get additional insight into her life and care. The bedroom looked out onto a small courtyard with little personalisation or visual or sensory stimulation. The RPPR spoke to the home manager about improving the person’s quality of life through her environment and adding plants and flowers, fairly lights and photographs. Home staff have reported that she appears to be getting pleasure from these additions.

Independent Mental Health Advocacy (IMHA)

The person was detained in hospital under the Mental Health Act but did not want to be there as they did not feel mentally unwell and did not want any medication. They also wanted to go home to get their belongings. The advocate explained their rights and assisted them to contact a solicitor and understand how they could appeal their detention. The advocate also supported them to express their views and concerns about medication at the weekly ward review, where they were given more information about the medication and possible side effects. The advocate supported the person to request leave from hospital to get their belongings which was agreed. The person was able to understand and exercise their rights under the Mental Health Act and be more included in their treatment.

Independent Health Complaints Advocacy

The advocate supported someone who is autistic, and has ADHD, dyslexia, PTSD and fatigue. She had been referred to a gynaecologist by her GP because of menopausal symptoms but felt that the gynaecologist ignored her questions and would not let her speak. The advocate supported her to write a formal complaint letter to Sussex University Hospitals Trust. English was not her first language, so the advocate took additional time to understand her concerns and outcomes she wanted. Sussex University Hospitals Trust replied to apologise for her experience and arranged an appointment with a different gynaecologist, an outcome that the person was satisfied with.

Independent Care Act Advocacy 

The person lived in her own flat and has mental health needs and possible dementia. She declines all medical intervention and has a care package with a homecare agency visiting her three times a day, and also two longer visits a week to get out into her local community. She was supported with her care and support plan review and has been assessed as lacking capacity to decide about her care and accommodation. There had been some recent concerns about small fires in the person’s home and her ability to cook at home anymore, so she was receiving meals on wheels. A care home was being suggested and the person was very insistent, as she always has been, that she wants to live in her home as long as possible. She worked with the advocate to explain this to the social worker and also request a change to her meals on wheels arrangements to better suit her routine. She continues to live at home independently.

Independent Care Act Advocacy 

The advocate supported a person with a Care Act assessment. He lives in sheltered accommodation, is autistic and has physical health issues. The advocate worked with him to prepare for the Care Act assessment and came to the first meeting with the social worker. The person talked with the advocate about possible strategies for triggers when he is out, such as listening to music, and supported the person to share this with the social worker. The social worker suggested including digital support in his support plan so that he could get support to use the internet, put music on his phone and use the internet to shop online when he was not physically able to and therefore increase his independence and reduce reliance on support. The advocate was also able to agree helpful communication strategies with him so that he did not become so focussed on one topic, and the social worker was then able to use these during the assessment process so that the process was more tailored for the person and was also more efficient for Adult Social Care.