People's Advocacy Stories

Comments from people who have used advocacy services:

"My advocate has helped me to negotiate and build better relationships with professionals. He (advocate) has supported me and shown me how to build some trust with them. This has meant that I am able to accept the services that I need and people see me as a person and not as a problem".

Young man with mental health issues

"With the help of my advocate I managed to convince people that I could live more independently and they have now set up a housing project with me and two of my mates in our own flats, supported by staff. My advocate helped me think about the questions I needed to ask when I was interviewing for staff. When I didn't have an advocate, no one took any notice of what I had to say".

Person with learning disabilities living in residential care

"Even with the support of my advocate I didn't get to keep my children but at least when they grow up and I meet them again I can tell them honestly that I did all I could to keep them. My advocate did that for me. She helped me to get through all the court cases and to understand what people meant. She made sure that I knew when I had to get to appointments and to meetings and what they were all for. It wasn't her fault that the system is all wrong and they won't let me keep my children".

Mother whose children have been taken into care

"David became my advocate when I was 14 when I was having trouble with school. I was being bullied because of my appearance and I was not fitting in as I did not listen to music like the other girls and boys did, or have any interest in clothes etc. Advocacy told me about the local college who was doing a 4 year health and beauty course. David told me Shelley needed someone to practice on and everything would be free. Shelley was so kind I agreed. The girls at the college used to say I was beautiful and helped me to look after myself. Then Shelley helped me with my spots and make up and then the other girls wanted to do my hair. Soon they were transforming me and encouraging me to take more interest in myself. David also helped me to find out about boy bands and gave me magazines to read. Soon I was making friends in school as I was taking more care of myself and was not standing out so much, and I knew about the music they were listening to, so life became easier. I left school last summer and my advocate helped me to find a college course to do Health and Beauty…... This is how advocacy helped me".

Young person at school

Lynns' Story

Lyn's story shows how advocacy can make a real difference. Lyn has successfully cared for her child for the last four years. In the winter of 2004 her mother had an accident and things started to go wrong. The boiler broke down and the family had no hot water for weeks. At this point, Lyn tried to get the housing association to repair the boiler. When her efforts were unsuccessful she contacted Social Services.

Social Services decided that the child should be put on the 'At Risk' register. Many professionals carried out assessments and there was general agreement that Lyn needed to move out of her family home with her child if there was to be any improvements in the standards of care and home environment. There was little liaison between Social Services and housing and no agreement between Children's' Services and Adults' Services on the care package or the financing of that care package. No one did anything to support Lynn to access more appropriate accommodation and a case conference was held with a view to referring the case to court.

Independent Advocacy was approached and with Lyn's consent the advocate sought a review meeting with all parties involved, together with separate meetings with both the housing association and the borough council. A referral was made for a Social Worker from the Adult Team. At the case conference there were nineteen professionals and without an advocate by her side Lynn would have felt isolated and alone.

OUTCOME:

• The housing trust allocated a house for Lyn and her son and they moved in.
• Lyn has co-operated with all agencies in the myriad of assessments with the support of her advocate, who helped her to understand the reason for the assessments and what was needed from Lyn if she wanted to continue parenting her child.
• Children's' Services and Adults' Services agreed to fund a joint package of care to support Lynn with her parenting skills.
• The child started school and Lyn has co-operated fully with staff and with the school. Lyn's child is arriving on time and appropriately clothed.
• Lyn was referred for a Citizen Advocate to provide her with ongoing support and a person that she could always talk through her problems with.

Ruth's Story

Ruth's son has high support needs and has spent many months in hospital and Ruth found it very difficult to deal with all the professionals involved. The Consultant said her son, Tom, would not get better so he refused to continue with the treatment. Ruth was supported to attend multi-disciplinary meetings and to voice her feelings. Tom did get better and another Consultant said he should be treated if he was poorly again. Tom now needs 24 hour nursing support and is no longer able to live at home. He is currently living in an older people's home that is far from ideal for a young man of 20.

The housing association said that Ruth would have to move out of her home as Tom was no longer living there. Her benefits had also been stopped and she had no money. It took all day at the job centre to get through to the telephone help-line for Crisis Loans. The people at the job centre apologized, as they knew how hard it is to get through.

OUTCOME:

With the support of an advocate the housing association were contacted and agree to a secure tenancy for Ruth. Prior to the involvement of the advocate they had not had a clear picture of the situation because no one had supported Ruth to explain. Tom has started to have visits home that are very successful. The advocate challenged Social Services about their assessment of Tom's needs and the appropriateness of the home he was in. They agreed to look for a new home for Tom. The advocate was able to support Ruth to identify all the appropriate agencies she could use and she was able to have a stronger voice to tell others of her wishes.

Michael's Story

Michael lives with his wife and their two children. He referred himself for an advocate when he was seeking help to resolve multiple issues that were worrying him. He saw his problems as including living in accommodation owned by his mother-in-law, and his rights as a tenant and also his significant health worries. He had a difficult relationship with his mother-in-law and this had escalated into a situation where he was taken to the local police station.

Michael was concerned that had been labelled as being aggressive because of the way the police viewed the incident and wanted to know what had been written about him. He had complained to the police that he had not had the opportunity to say what had actually happened. The advocate supported Michael to present his side of the story at a meeting with the police. The police sergeant read out what was held on record and Michael was able to say when, in his opinion, it was inaccurate and further notes were recorded. The advocate also discussed Michael's need for an appropriate adult should he be arrested or held at the police station for any reason. Michael felt that he had been listened to and gained knowledge of his rights which would help in the future.

The advocate gave Michael information about how to apply to go on the Housing Register and how to contact the Council as a step in finding his own accommodation.

The advocate also supported Michael to talk to his psychiatrist who Michael felt did not listen to him. Michael was supported to gain a Direct Payment to fund a support worker which enabled him to travel to attend activities of his choosing and support him in his role as a father of two small children.

What has changed for Michael?

• He has a greater awareness of his rights.
• He has become better at speaking up in situations he finds difficulty.
• He is experiencing a different social group.
• He has access to information which has helped him to make decisions.
• He has support via Direct Payments that was previously not there. 
• He felt listened to when previously he was not.

Fahmida's Story

Fahmida was referred because she had moved into respite care when her mother became too ill to care for her and it had become necessary to find somewhere permanent for her to live. Fahmida has high support needs and can use limited words to communicate although this tends to be repetitive and she will mostly answer 'Yes' to questions. The advocate met with Fahmida regularly to establish her method of communication and after a while it became apparent that Fahmida lacked the capacity to make an informed decision about where she wanted to live. The advocate attended all meetings where decisions were being made about Fahmida's future and used the 'Watching Brief' to ask professionals questions about why they were proposing a particular course of action. During the time the advocate had spent with Fahmida it became clear that being able to access a garden and to watch the birds from her window, although seemingly very small issues, were important to her. Fahmida also liked to be able to access the shops, particularly to buy chocolate buttons! The advocate was able to ensure that others knew these matters were of significant importance to Fahmida.

The advocate went with Fahmida to visit her proposed new accommodation and took photographs which were put into large book to use as prompts for the advocate and carers to talk about her new home. The advocate made many visits with Fahmida to the new home together and was able to identify that Fahmida was very relaxed there and accessed the garden each time.

Warren's story

Warren, 18, lives with his girlfriend, and has a very supportive family. He took an overdose of paracetamol after an argument with his girlfriend. Police found him nearby, and took him to hospital under Section 136 of the Mental Health Act. The assessing team, which included his GP, did not think it necessary to admit him for an assessment at the time.

Warren had been diagnosed with ADHD (attention deficit hyperactivity disorder) in the past, but had no previous mental health history, and he agreed to accept treatment from his GP. The following day, there was an argument between his girlfriend and a neighbour. The police were called and Warren became agitated and jumped out of the first floor window.
Warren's parents felt that Warren was at risk of harming himself and needed more help, but thought he would not agree to this without force. They did not think they were unable to support him at home and felt that he should be detained under the mental health act. Warren did not feel that he could trust anyone in this situation to talk to about his problems because of his fear of being locked up.

An independent advocate discovered that Warren's close friend had recently died of cancer and he was still coming to terms with this. He jumped out of the window when he became agitated because of the involvement of the police, who he suspected would take him back to hospital and keep him there. He often used the window to leave the house because he worked as a roofer and did not see this as dangerous or risky. Warren had argued with his girlfriend because she did not understand why he was so concerned about the death of his friend.

Warren felt unable to discuss his situation with any of the family or doctors around him because he was afraid they all wanted him to be placed in a hospital and they did not appear to listen to his views. When he had tried talking to his girlfriend it had caused even more problems for him.

The advocate supported Warren to explain everything to his family so that they could gain an understanding of the current situation and the context. They agreed it was in Warren's best interests for him to go home with them and to get the support he needed. Warren was supported to access psychological support, to help him work through the loss of his friend. Warren was willing to go home with support from his parents and his GP, and accepted further help that was offered. This meant that the risks were reduced and Warren would be safe, with a positive outcome for Warren and his family.

Simon's Story

Simon was referred to an Independent Advocacy Organisation by his brother. Simon was 42 years old and had enduring mental health problems. He originally came from Gloucestershire and prior to the advocacy referral he had absconded from a placement where he was unhappy. He ended up in Devon where he was placed in a nursing home for adults predominantly with learning disabilities. His family felt the home was unsuitable for Simon and they had been trying for the last 4 years to get him moved back to Gloucestershire.

An Advocate visited Simon several times to find out what his views were and what he wanted to do. It soon became very clear to the advocate that Simon wanted to move back to Gloucester to be near his family.

The difficulty was a financial one and neither Gloucestershire or Devon local authorities wanted to take responsibility for finding and financing a more suitable home that better met Simon's needs. The Advocate liaised with Social Services and asked various questions about the placement and the lack of appropriate assessment. This was followed up by several letters. By discussing options with Simon and helping him to understand what alternatives were available, the advocate was able to speak up on Simon's behalf and made it very clear that the funding issue was not Simon's responsibility and the current situation was unacceptable.

Outcome:

Guided by the information he had gained from Simon and presenting those views to service providers, the advocate was successful in securing a placement in a residential home in Gloucestershire with more suitable stimulation and activity. Simon's family was able to visit much more regularly and he was also able to visit them.

Without the intervention of an independent advocacy service, Simon would not have the opportunity to represent his case. The family felt that their opinion was seen as biased and possibly in conflict with what Simon wanted. The authorities involved were guided by cost and lacked any personal involvement with Simon. After the move Simon showed much more interest in what was going on around him and felt his quality of life was greatly improved. He hoped to receive appropriate treatment and eventually return to his own home.

Krishan's Story

Krishan lives very independently in the community but his learning disability affects his speech and means that when he tried to phone a taxi late at night the controllers thought he was drunk and usually found an excuse not to send a taxi out. This placed someone who is usually very independent, at risk of being stranded late at night. He raised this issue at a self-advocacy group and the facilitator rang a number of local cab firms and discussed this with them. Some were helpful and sympathetic while others were not. Krishan chose one of the more helpful companies who had a regular staff of two controllers, and the facilitator phoned them back and then handed the phone to Michael to discuss a way to solve the problem. They agreed that all controllers and drivers would be told his name and that he would phone and say 'Hello this is Krishan" and then request the taxi. He was also given contact details for the owner to report any problems he might have.