Advocacy stories

Jake lived with his best friend, in a house where they enjoyed gardening and listening to music together. The new flat didn’t look safe, and he didn’t understand why he had to move. Jake wanted someone separate from his social work team and support workers to help him find out what was happening, to help him decide what to do, and to get his voice heard. The manager at Jake’s day centre asked an advocate, Louise, to help Jake.

Louise met Jake and his social work team. They didn’t know anything about the plans for Jake to move out of his home. Because Jake and his friend had a learning disability, support workers from a care agency were helping them to live independently. Jake and his friend had told their support workers that they wanted to stay living together, but the care agency wouldn’t respect their wishes.

Although Jake found it difficult to talk, he could use single words, Makaton and pictures to explain his thoughts and feelings. Louise talked to Jake on his own so that he could have private conversations about his wishes and feelings. She made sure that the social work team and care agency started listening to Jake, and explaining what was happening. Louise helped Jake tell his social work team and the care agency that he didn’t want to move into the new flat.

The care agency told Louise that they wanted Jake and his friend to move out so that someone else could live in their house. But the person in charge of the flat told Louise that Jake would not be happy and safe there. There was no garden, and someone else with support needs, who had lived in the same building before, had trouble from drug dealers. Louise told Jake that the care agency wasn’t allowed to move him to an unsafe flat.

Louise helped Jake understand that he had the right to choose where he lived. ​“I found a lovely new bungalow with a garden, and we visited it together but I could tell from his body language that he still wasn’t happy,” says Louise. ​“I said, ​‘do you like this place?’ and he said ​‘No’, and then said his friend’s name.” Later on, using pictures and Makaton, Jake explained again to Louise and his social worker that he definitely wanted to stay in his home with his friend. ​“I told him that it was his right to stay at home, and his whole body relaxed. His face and eyes lit up. He put his thumb up to sign ​‘OK’, and smiled.”

The care agency agreed that Jake had the right to stay at home. Jake and his friend are now living happily together in the home they love, and feeling more independent than ever.

When Gordon applied for Adult Disability Payment, he encountered a lot of barriers.

“I’m glad I had Cheryl [as my advocate]. We had three or four meetings to get the form complete as we couldn’t find time to do it in the community centres and libraries, as they weren’t always open – it was the school holidays when we started the process. We ended up having to go from library to library, and my local library has closed so we had to go out of my village. 

“Luckily I had a car at the time, but I had to go nine miles to another library. There are computers in my village but they hadn’t put in the investment to make sure there was a wifi connection, so we couldn’t use them.

Things like that put an obstacle in front of people like myself, and people who are far worse.

“Fife’s very rural – it’s not like Edinburgh where you can jump on the bus for £2.50. If you’re in a village, it’s a problem to apply.

“The form – a lot of the time the questions were confusing, we weren’t sure exactly what they meant. I was given empowerment to complete it myself, but then Cheryl would say, I don’t think it means that, it means this. Sometimes we weren’t sure, but we would talk about it. I’m lucky, I wasn’t on my own.

“People on their own might end up putting the wrong information in and not get the right result.

“We spent a lot of time talking about what was the right answer, what goes in what box – my advocate would tell me, there’s another box down here that that goes in. Another good reason why it’s a good idea to have an advocate when you’re filling out the form. 

“I’m not having a go at the admin people, but it did feel like it was somebody who didn’t have a disability who had put this form together.

“There definitely needs to be some research from people with disabilities to say what is it we’re actually looking for, and how should we put it, to make it easy for that person to tell us about themselves.

“I got the form filled in online, and they needed evidence. I had a stack of evidence of a lot of things – delicate issues that you don’t really want to talk about, but I had to. It was difficult for me. 

“I photocopied the evidence and sent it away, both the DWP and to the Scottish disability system, as I was coming out of one system to the other. The evidence arrived for the DWP, but never arrived here, and I wasn’t informed until 11 weeks after that they had not received my information. I got a call, the gentleman said we haven’t got it, could you upload it? 

“I’ve got a decent enough computer but apparently I didn’t have a good enough camera, it was too blurred. They asked me to use my phone but it was still blurred, so he said he would apply to my surgery and get the information from them.

“They asked me a lot of the questions that were on the form, on the phone, and I did it. 

I answered their questions. It wasn’t easy or nice to do that, but I did it, because I know how desperate I am to get help, financial help.

“I have health problems and this doesn’t help. I might not get the right result, because the surgery didn’t have the resources to deal with the request, or because they didn’t get the information they needed because it was made so tricky by technology.

“You need to speak to the people, the very people who are at the end of all this. They’re the people with the answers, not the people doing the admin. The people down at the bottom have got the answers – they just need to come and take them.”

One of our advocates, Karen Neilson, has been working for VoiceAbility since 1 August 2023. Karen spoke to us about her experience working with unpaid carers in Edinburgh, and one individual in particular called Jenny.

In July 2023, Jenny’s case was transferred to VoiceAbility from Edinburgh Carers Council for support. She was struggling to get respite and was assigned to Karen.

“Jenny had had no respite from her caring role for almost 7 years. She was approaching her 70th birthday and desperately wanted to go on holiday with her sister to celebrate this special occasion.

“Like so many unpaid carers, Jenny had always put her husband Ralph’s needs in front of hers.

“Following a brain injury and later illness, Ralph was now completely dependent on Jenny. He had a package of care in place. However, unfortunately, due to Ralph’s condition, there were times he would refuse the carers’ support and Jenny would be left to provide all his care needs.

“Jenny had been trying to access respite through the social work department, but had become anxious and upset with the frequent changes in social workers.”

Jenny was unsure about the contact details for her fourth social worker in less than a year. So when Karen came on board, Jenny was understandably sceptical about any support VoiceAbility could give.

“I approached my work with Jenny in a person-centred and transparent manner. I suggested we aim for her top choice of respite care, but we may need to accept somewhere in the middle. We had a lot to consider, not least that both Jenny and Ralph felt comfortable with the care home during the respite period. I worked collaboratively with the care home manager, social services, and, most importantly, Jenny.

“By taking a collaborative, open approach, I secured the first choice of care home for both Jenny and Ralph.

“I also shared with Jenny her entitlement for annual respite funding, which she had been unaware of.”

When Karen phoned Jenny to tell her the good news, she burst into tears and said: ​“You have moved mountains in two short weeks that others had been unable to do over months. I cannot thank you enough for this. I cannot believe it is actually going to happen. Thank you so very, very much.”

“I could hear the joy in her voice,” added Karen.

Tommy was due to have a cataract operation and an advocate called Krish came to support him as an IMCA.

Tommy’s carer said: ​“I was delighted to see how Krish worked with Tommy. Tommy is 78 and Krish put Tommy at ease almost immediately, not an easy task as Tommy has a great distrust of strangers.

Tommy went into hospital completely relaxed and the operation was a total success. This was definitely due to Krish’s input and Tommy still talks about Krish and asks, even now, if Krish is coming back to see him.

We were originally told Tommy could only have his right eye operated on and that he couldn’t have any further surgery, but we were truly grateful it restored Tommy’s sight. Last week, the consultant told us that Tommy can now have his left eye operated on in March and this will totally restore his sight. Tommy is thrilled and he’s really excited about going in for his operation because he hasn’t any fear of the hospital and he understands how much difference it’s going to make to his life.

We can’t thank Krish enough for the help he gave Tommy, it’s obvious to us that Tommy benefited greatly from Krish’s visit.”

You’re almost 18. You’ve been in the care system since you were six years old, in placement after placement, but for a little while you’ve been settled. Now, you’ve been moved to a new town where you know no one, into a supported living home full of strangers where the manager treats you like a child.

No one asks you if this is what you want. No one seems to think your opinion matters.

That’s what happened to Jamie.

When his independent advocate Jo met up with him at home, he felt she was the first professional who really ​‘got him’. Jo took him seriously. She wanted to know what he wanted from his future, and to make sure his wishes were heard.

Jamie told her wanted to be properly involved in discussions about where he would live, not just hear what other professionals decided to share with him. He wanted to be fully involved in plans for him to leave care. He wanted to be able to make choices for himself, and not be talked down to. Jamie is autistic, and his many moves have impacted his mental health. This meant some professionals didn’t take the time to listen to him - but he had the right to be an active participant in his own future.

With Jo’s support, Jamie’s voice began to be heard in meetings, and he began to be empowered to make his own decisions.

Now almost 19, Jamie is transitioning from care services and into his own flat, back in the area he knows well. He’s buying things to make it his own, and organising his own bills for the first time. He’s got friends around him for support, and he feels that he’s been seen and heard.

Now, Jo will act as his Care Act advocate, to make sure Jamie continues to be heard.

Our advocate, Janet, supported a deaf couple — Mr and Mrs Morrison —through our NHS complaints advocacy service. Janet’s work was so effective that the relevant NHS trust pledged to roll out training on how to better support deaf patients. 

Mr and Mrs Morrison had a dreadful experience at hospital. They experienced a total absence of deaf-friendly communication and awareness, which meant they missed appointments and received poorer treatment. 

Advocate Janet said: ​“No reasonable adjustments were ever made to accommodate their disability or take into consideration that British Sign Language (BSL) is their first language. They asked each time for an interpreter to be provided and this didn’t happen.”

These experiences, understandably, made the Morrisons feel undermined and insulted. The couple received NHS complaints advocacy support from Janet. 

Through a series of face-to-face meetings between Janet, the Morrisons and a BSL interpreter, Janet explained her role and began to help the Morrisons log their experiences to inform their complaint letters. Janet tells us this process took months. Janet then drafted full complaint letters for the Morrisons as they did not have the skills to do this themselves. 

Symbolically, the Morrisons chose to hand-deliver these letters to the hospital themselves. The NHS trust replied in writing.

The NHS trust said: ​“We cannot mend what happened, but we can certainly learn from it, and we have developed a clear process to ensure learning and actions are followed through and shared.” 

They also made it clear they took the Morrisons’ complaints very seriously. 

In a face-to-face resolution meeting with the NHS trust, Mr and Mrs Morrison received an apology from staff representatives. Janet also remembers hospital staff were visibly moved by the couple recounting their experiences. 

The NHS trust pledged to address failings in their services through rolling out new training across the county. This training will cover all staff from porters to doctors, provide better availability of BSL interpreters and increase awareness about the hurdles faced by members of the deaf community.

Mr and Mrs Morrison said they felt happy, relieved and hopeful about the outcome. They’re also very grateful to Janet for her support as they felt they could not have gone through the process on their own.

Lea visits her baby at a contact centre, but when the times of her visits changed, Lea felt this was unfair.

Lea* and her baby daughter Tia lived in a mother and baby unit for three months. Since then, Tia has been cared for by a foster carer while Lea focuses on changing the aspects of her life that Social Services have concerns about. Tia is now 7 months old, and Lea visits every weekday morning to dress her daughter and have valuable bonding time at a contact centre.

Then the timings of these visits changed to the middle of the day, which was Tia’s nap time. Lea was told she wasn’t interacting enough with her baby - because Tia was asleep.

A Looked After Child Review was coming up, and Lea wanted some support. She feels she​‘shuts down’ in meetings and that everyone there is working against her. 

She just wanted someone to be on her side. 

Building confidence to speak up

Lea’s advocate Charlotte met her in a café a week before the review meeting. Lea explained that she was doing to change in light of the concerns raised by Social Services, and how the change in times was impacting her relationship with Tia. 

Lea also felt she had been set up to fail at the meeting, as it had been arranged at a time when they knew she would be on a train travelling to the contact centre to see Tia. 

Lea hadn’t felt confident enough to say this, and it was too short notice to change the time.

Charlotte attended the virtual meeting. Initially Lea asked her to do all the talking, but Charlotte encouraged her to speak first, and said she would be there to step in if she needed any support.

During the meeting, Lea needed almost no support from her advocate - she was brimming with confidence to say what she needed to say. Charlotte only had to step in when Lea’s train went under a tunnel and she lost connection.

Time together

As a result of the meeting, the visits at the contact centre changed back to the original time. It was agreed with the foster carer that she would take Tia in her baby grow, and Lea would bring clothes to dress Tia in to reinstate that bonding activity they had been sharing at the beginning. 

As the time was changing, this also meant that Tia wouldn’t be asleep. It gave Lea much more opportunity to do things like read to her, sing to her and feed her as she was being weaned off formula.

Lea thanked her advocate for supporting her at the review meeting. 

* To protect people’s privacy we don’t use their real names, but their stories are genuine.

Claire was leading a busy life in Bradford, running her business with her husband and looking after her 8-year-old son. But she was feeling isolated and lonely. Her relationship was abusive and she was struggling with mental ill health. 

When she was admitted to hospital for a mental health assessment, Claire met advocate Teresa, who was running a regular advocacy drop-in. Teresa explained that advocacy was about supporting Claire to understand her rights and have her voice heard. She gave Claire time to consider whether she would like advocacy support. She gave Claire her phone number and invited her to chat during the next drop-in if she wanted to. Teresa earnt Claire’s trust by chatting with her at the weekly drop-ins and Claire decided she wanted to be formally referred for advocacy.

Claire and Teresa discussed what Claire wanted. Teresa helped Claire understand her rights and options not only about her care and treatment in hospital but also about being able to see her son, her housing, and information about domestic violence support and divorce. She gave Claire a list of local solicitors, community support groups and organisations who could help her. She offered to explain more about Claire’s options, and to help Claire contact the people on the list.

After four months of weekly advocacy support, alongside care and treatment, Claire grew in self-confidence and started to make decisions about what she wanted to do next. She got support in her local community, using the information Teresa gave her. Claire was eventually discharged from hospital and is now in her own flat. 

Claire said: ​“Teresa helped me make sense of what was happening to me and broke it down into more manageable chunks I could deal with. I feel stronger and more able to cope.”

Heather is in her 50s and lives in south-west London. She asked for an advocate when she was sectioned and in hospital, because she was frustrated with her care and treatment and wanted to challenge some of the decisions being made. 

Heather had already been sectioned in hospital before. That time, she had been discharged under a Community Treatment Order (CTO) which gave rules about where she could live and get treatment. Heather had disagreed with the rules, which meant she was now back in hospital again. She was told she was not allowed to spend any time away from the hospital until she was discharged, and that when she was discharged it would be under another CTO.

Heather told her advocate Maryam that she was frustrated and upset because she didn’t want to be under another CTO. She also said she wanted to spend some time outside of hospital while she was getting treatment for her mental health problems, and that she wanted to change her medication.

Maryam explained Heather’s rights and options to her. She explained that Heather had the right to be involved in planning her care and treatment, and to challenge decisions around her freedom to leave hospital. Heather asked Maryam to write a letter to her doctor on her behalf. In the letter, Maryam highlighted Heather’s rights, asked about Heather’s admission and treatment plan, and asked for her to be allowed to spend time outside the hospital.

Heather asked Maryam to come with her to the discharge meeting. At the meeting, they told the clinical team that Heather disagreed with the changes that had been made to her treatment plan. They also told the team that Heather didn’t want to be placed under a CTO when she was discharged. Because Maryam had explained to Heather her rights and options, Heather felt confident to put her own views forward in the meeting, and to get involved in planning next steps. 

Together, Heather and the clinical team set out a treatment plan that she was happy with. After fewer than two months working with Maryam, Heather got the changes she wanted to her medication. Heather left hospital without being put under a CTO. Maryam made sure Heather knew how to get advocacy support in future if she needed it, and Heather thanked her for being a ​‘great support and help’. 

17-year-old A-level student Tori was detained in hospital under the Mental Health Act for her own safety, when her self-harm became a threat to her life. She asked for advocate Eve’s help, because she was worried that the hospital would discharge her before she felt safe and ready. With Eve’s help, she was able to understand her rights and have her wishes respected in decisions around her discharge.

Tori’s previous discharge arrangements had come at a very difficult time for her, and before she was due to be sent home, she had attempted to take her own life. Since then, she didn’t feel she had been given any meaningful help at hospital to improve her mental health. She told Eve that she didn’t know how she would cope if she left hospital, and that she was terrified of going home. She was also concerned about the worry she would cause to her parents and young siblings if she went home while feeling so unwell.

Eve agreed to support Tori to raise her concerns with staff, and to ask for a plan which included therapeutic sessions at home once she’d left hospital. Eve accompanied Tori to her discharge meeting, where she helped her to feel confident in expressing her own views and to feel listened to by the medical team.

After the meeting, Tori felt positive about her discharge. She was excited to be going home, and looking forward to restarting her studies. Thanks to support from her advocate, Tori now understood her rights, knew how to get involved with decisions about her care and treatment, and had regained the confidence and self-esteem she needed for a successful return home to her family.