'I read through the Case Studies and they are simply empowering at how advocacy can make such an impact on poeple's lives, makes me proud to be a part of the Advocacy Service!' Advocate, Lomond and Argyll

The difference having an advocate made to our lives
Safeguarding Prisoners with Learning Disabilities
'I got my little boy back.  It's crazy to think that I got my son back just because I asked'
Making care safe
Giving back and making a difference
Advocacy into Action: A Carer's Story
Getting on track: Western Isles
Advocacy and Stroke: Mark's Story
From Advocacy Partner to Advocate: Ruth's story
Stand by me.  A poem by Jo McFarlane (watch Jo read her poem on YouTube )
Acting as a 'named person'

The difference having an advocate made to our lives

I would like to start with some background. My wife has a chronic illness and disability which over the past three and half years has worsened making her mainly bed and Housebound.  I myself am her full time carer I also suffer from mental health problems which make it difficult for myself to talk on the phone and I frequently get over- stressed about situations. Due to both our health problems communicating our needs and gaining the correct support has been very difficult.

When my Wife’s condition first began to deteriorate we were living in a privately rented two storey house that was totally unsuitable for someone with such a Chronic/Illness disability. As my wife’s condition had deteriorated so much she was in a Hospital bed in the lounge and I spent a year sleeping on the sofa as she couldn’t be left alone for long.

Our first contact with Advocacy Orkney was when we applied to be re-homed by the council to a suitable disabled property. Advocacy Orkney helped us in the application and communicated with the council for us. Without their input and communication we believe we would have never got re-homed as quickly to a suitable property as we were, after their help. Their understanding of the processes enabled us to communicate our unsuitable housing situation and how it was affecting both our health.

After this I attempted to deal with and get services and help for my wife and myself alone. I am afraid I failed drastically as much as we tried to communicate with Health professionals and other organisations it felt like no one was ever listening and the stress of it was affecting my ability to care for my wife.

Eventually we went back to Advocacy Orkney and requested help. We were assigned an Advocate who specialised in helping people with Mental Health problems. It’s hard to describe the effect that this had on our lives. A weight was lifted and we had someone we could trust who was able to put our views across. It also makes a difference having someone who understands why we act like we do and is happy to communicate in a way we find comfortable.

In a couple of months our Advocate managed to help us achieve more and gain more help than a year trying to work with a Social worker.  We have had problems accessing specific medical personnel and services. With help from our Advocate we have been able to access these services. This has improved both mine and my wife’s quality of life, physical and mental health. It can still be a struggle and I still have problems communicating but we know we have and independent person who will put our views across. It gives you great confidence knowing that they won’t impose their ideas upon you and what they are communicating to others are your wishes not what they think you want.

Advocacy do far though than help us communicate on medical matters though. We have help sorting out general issues that people without mental health [issues] would find straight forward. We have had help with dealing various bodies from the council to private firms and of course doctors and other medical professionals.

As we have a lot of ongoing issues that we need help with, the help that Advocacy provides is a service we could not do without. I cannot praise the staff enough and our Advocate and the ongoing change that they have helped in our quality of life.

Safeguarding Prisoners with Learning Disabilities

Two of The Advocacy Project's clients with learning disability both became part of the prison system and ironically were placed in the same cell.  The advocate informed both social workers of this which meant that all agencies could avoid any conflict of interest between the clients who both lived in the same local authority area.  In this instance, the two clients supported each other through their prison stay and formed a bond while in prison.

The advocate ensured that prison social work were aware of their disability and further ensured the procurator fiscal, sheriff and the clients’ lawyer were also aware.

The advocate was also able to explain the legal process to both clients and discuss with them the implications of pleading guilty or not guilty.  For one client with multiple offences, a global plea was being offered and the advocate explained the implications of this to the client.  This was particularly important as acceptance of the global plea meant they would be included on the Sex Offender’s Register.

When one client’s mental health deteriorated badly, the advocate informed prison social work who, as it happened were aware of the situation and had placed the client on suicide watch.

The advocate supported the clients when their lawyers visited and also when they were out of prison and supported them at numerous court hearings.

All through the process, the advocate made sure the clients understood the process, kept appointments when they were out of prison, supported them at meetings and hearings and ensured other agencies were kept aware of developments.

'I got my little boy back.  It's crazy to think that I got my son back just because I asked'

Janette was referred to Advocacy into Action (now Central Advocacy Partners) by the Children & Families social work department.  Although her fifteen month old son lived locally with her aunt under a kinship care arrangement, Janette went round early every morning to provide all his care sometimes for 12 hours a day doing everything for him, feeding him, bathing him, changing him, etc.     

She didn’t listen to advice from her lawyer because things were good then, thinking that saying anything would only make things worse.  But then her contact was reduced, she was forced to babysit other kids in order to see her son, there were problems with other members of her family and quickly she had no-one on her side. 

Janette had thought she was lucky to see her son because Social Work said she could agree to him staying with her aunt or she wouldn’t see him again until he was sixteen.  Back then the worker wasn’t supportive and didn’t believe she was able to provide proper care for her son.  J felt unheard and wasn’t believed when she said she had stopped drinking alcohol to excess or spending lots of time on the internet the way she had previously.

We found out that her son was living away voluntarily, meaning that she agreed it was best for him, even though she didn’t.  When it was explained so that she could understand everything, she realised that her son wasn’t ‘looked after’, meaning that he wasn’t ordered to by a court or a Children’s Hearing.  She realised that she was actually providing all his care until she was stopped from seeing him altogether by her aunt.

When the social worker changed she spoke to the new worker who agreed that this situation wasn’t good for him and she agreed to an assessment for rehabilitation?  J didn’t know she could do that and always worried that asking questions would make things worse for them both.  She couldn’t believe it when the social worker said there was no reason why her son wasn’t living with her!  We asked in April 2011 and he came back to live with J permanently in June 2011, it only took ten weeks.

'I got my little boy back.  It’s crazy to think that I got my son back just because I asked, but it’s true.  It’s hard to explain how different it is to have him home instead of in my aunt’s house but it’s different.  It’s up to me now. No-one else can do it, it’s up to me and I need to ask for help if I need it but I will do if it means keeping him at home.  I can just relax now not feeling like someone is watching over my shoulder but knowing that I’m the one responsible for him all the time, it’s just great.  I’m looking forward to things more now.  I want my son to be happy and healthy and I will work with everyone to make sure that happens.  I know now that I should ask for things if I want them and that I shouldn’t be afraid to ask for help ‘cos of my learning disability. 

'Advocacy gave me the courage that I didn’t have by myself.  I hope Dylan is able to stay with me permanently.  I know that I can go back to my lawyer anytime I need her and she was really nice.  I would know where to go for help and that’s something I’ve learned.  I can stand up for myself and I’m a tougher person now.

'Social Work didn’t use to listen to me at all because I had a learning disability and couldn’t understand everything that was being said.  Then they began to listen more because advocacy was there.  Then the worker changed and the new worker was much better so she was fine about listening to me and advocacy.  I think it was easier for Social Work to speak to advocacy than me at times.  I don’t need advocacy now ‘cos someone else maybe has their wee boy being looked after but can do it themselves.  I hope they get the same help I did.'  

Making care safe

Mrs X was referred to Ceartas by her GP who was concerned at the level of care provided in the care home. There had been an incident within the care home which resulted in Mrs X sustaining an injury. The funding local authority and host local authority were in dispute as to who was responsible for investigating this under Adult Support and Protection procedures. The GP felt that Mrs X was in danger of having her views marginalised and her rights undermined.

Mrs X lacked capacity and had difficulty with verbal communication so a non instructed advocacy approach was used. The advocacy worker ensured that Mrs X had her right to access appropriate communication aids through speech and language input. The advocacy worker was then able to make use of the aids to determine Mrs X’s views around the situation. Mrs X was clear that she wished to remain in the care home, although she expressed concern at being provided care by certain members of staff following the incident. Mrs X did not want to participate in the review and case conference process. The advocacy worker was able to attend such meetings on her behalf and to express her points of view.

Independent advocacy ensured that Mrs X’s views were kept at the heart of the review and decision making process; she was able to remain in the care home of choice; steps were taken to ensure that care was provided in accordance with her wishes. Advocacy remained involved over a 12 month review period to ensure that Mrs X remained happy with the care provided. The presence of a Ceartas link worker in the care home ensured that Mrs X had ongoing  access to advocacy support when required for review purposes and also to ensure that she could raise concerns should they arise.

Giving back and making a difference

I was asked to join the Royal Edinburgh Hospital’s independent collective advocacy organisation, the Patients Council in 2007 by another current member, Patricia. She was very persuasive but I needed this as I lacked confidence. I was still in hospital and had been for over 4 years! My self-esteem was low and I wondered ‘what can I do’?

Not only had I been a long term patient but I also witnessed my Mum and husband’s stay in a psych hospital. It seemed to me that inpatients needed a voice, especially when it comes to safety, privacy and dignity. And that’s the Patients Council’s core remit.  I have never looked back!

I spent the first year shadowing other members: learning about going to meetings; getting to know the ropes- ‘who managed this and who could sort that’; deciding where my passions for change lay and finally, how to maximize my strengths and manage my time. After this I joined the management committee and am currently Convenor of the Management Committee.

Onward and upwards!  Today I am pleased to say that my involvement includes working with academic research into approaches to mental health training and delivery of services (Napier, Edinburgh and Glasgow Uni). This is largely due to a shift in attitudes within the NHS that service user’s experiences should be involved in the services we receive! Refreshing eh? Slow in coming, but it’s here and now!

Being a member of the Patients’ Council has increased my self-confidence and given me a sense of worth that I never thought possible after my own personal tragedy. I am now discharged and my recovery is due to the excellent treatment I received in the Royal Ed and the work I have been able to do since. ’Giving back’ is essential to me

We are a diverse group of people with an enormous bank of experience, strength and humour!  Maggie and Dave encourage and support us to maximise our potential to make a difference.

Alison
Convenor of the Management Committee, Patients’ Council
 

Advocacy into Action: A Carer's Story

AD was very withdrawn when he started working with his Advocate, Paul, and his carer was worried sick about him.  AD had a history of drinking and stealing and his carer could not get AD to listen to her and felt hopeless.  When she was fighting breast cancer she felt that she couldn’t go on any longer and that AD was a lost case.  Prompted by this and the fact that AD was being bullied at work led them to contact Advocacy into Action who set him up with Paul.

Now, his carer says 'if A is worried about something he will phone Paul.  Paul won’t tell him what to do.  He just helps A think things through.  It is still early days but we are more confident than we have been for a very long time.  We are hopeful about his employment and that A will be able to build on his own two feet.  It’s a bit like having stabilisers on your bike when you start, but then you go on your own.  That’s what we want for A'.  ' He is definitely more confident now and we are also confident that he is in the right place to get a supported job.  '

' I have asked for years for help, but I didn’t get anything until Paul came.  Now A has a social worker and Paul keeps him on the ball.  There is a big meeting coming up and I know that Paul will help A say the things he needs to.  I couldn’t do that any more.  Really a big weight has come off my shoulders.'

Without Paul A's carer thinks that 'He would have nothing.  He might even be dead.  He would have spiralled down and would be really abusing alcohol.  He is an alcoholic but working with Paul has helped him to focus on other things.  He still has a drink problem but things are better.  I used to have to go and look for him on the streets and would get so angry.'

'So much has changed.  A can talk up for himself now. Paul has given him avenues to explore and he is now on a completely different path.  He was wandering the streets before and he was so vulnerable because he will go with anyone.  He’s starting to get other interests.  He has support staff who come twice a week to give him social support and Paul is working with him to get a job.  He has an interview with Remploy and we’re hoping that he will get a job he likes.'

The most important thing the Advocate has done for A is to help him understand what is going on in his own life. 'he looks and sounds as if he understands everything that is said to him.  Paul takes the time to explain difficult things with A in a way that he can understand.  Sometimes this can take ages and Paul is the only one who can spend that time with him.  A comes away understanding a lot more than when Paul isn’t involved.'

'We have peace of mind and are confident that as long as Paul is there A will have a chance at the normal things that we have wanted for him for so long.'

Getting on track - Western Isles

C. had various issues in her life and was getting into more and more trouble until she sought help from Western Isles Advocacy.   Over time she was able to channel  her negative energy into positive energy, working with her Advocate to put together a case which she was unable to do before.  She says that Advocacy even kept her out of jail once.

The importance of the trusting relationship she has with her Advocate has been crucial.  She has avoided being conned and with her Advocate learned about her own rights and gained the confidence to realise that the professionals don’t always know what is best or get it right.   She says her Advocate was ‘very supportive and kind’ as well as honest and non-judgemental and, importantly kept her confidences.

Advocacy helped C  ‘By standing up for me and supporting me when my voice wasn’t being listened to.  Just by being there when you really need someone.  Felt that no matter what the situation they are right there on your side.’  ‘I feel I want to get up in the morning and change things, I feel more confident.  I feel I can discuss things about my issues in a more informed way.’

‘Advocacy told me never to give up and to keep fighting and a job will come for me, I did that and what happened, I got a job.’

C. believes that without advocacy ‘I would be screwed. I would give up’.  ‘The time and effort invested in me – it means that I am worthy as a human being.  Advocacy tries and does their best and at least you know you gave it your best even if you don’t get what you want.’
 

Advocacy and Stroke: Mark's Story

Mark is 37 years old and lives at home with the eldest of his two sons, who is 19. He served in the armed forces and had what he describes as an “ordinary life” until he had a stroke shortly after his 34th birthday.
Mark is now only able to walk short distances with the aid of a walking stick. His short-term memory is very poor and he finds it very difficult to retain information.

Following his stroke, Mark came to depend heavily on his wife who cared for him at home and also took care of practical matters, including the family finances. The family had little social work involvement. Mark was confronted with a major tragedy when his wife died suddenly following an unexpected and major heart attack two years ago.

Before her death, Mark’s wife, had acted as his appointee with the benefits agency and all of the family’s finances were handled through a bank account in her name. Mark continued to have benefits paid into his late wife’s account for some time after her death and relied on his teenage son to make regular withdrawals of cash from an automated cash dispenser. When his late wife’s account was frozen some considerable time later, the family were plunged into financial difficulties and unable to access funds to meet the normal costs of daily life.

A family friend encouraged Mark to contact the advocacy service. Mark’s advocate was able to visit him the following day and make arrangements for emergency assistance from social work. She was also able to arrange for a home visit by a welfare rights worker, although demands on the welfare rights service meant that this took several weeks to achieve. The advocate was able to help Mark to explain his financial dealings in the period following his wife’s death and to establish new banking arrangements.

Mark’s son has recently been appointed his financial guardian.  Mark is relieved that his financial affairs are now in order, but still finds it difficult to plan for the future, living life a day at a time.

His advocate has mencouraged him to contact the service again when he feels better able to consider his longer-term aspirations.

From Advocate Partner to Advocate: Ruth's story

Ruth first came into contact with advocacy whilst staying at the Royal Edinburgh Hospital. At first, Ruth was suspicious of people that she came in to contact with, since, her past experiences had led her to believe that she was by herself; isolated, with people unwilling to listen to her resulting in it being difficult for her to get her views across.

Whilst staying at the Royal Edinburgh, she noticed that she and other patients were often given the wrong dosage of medication, and sometimes the completely wrong medication. This was not through any intentional mistake, but through casual error. However, when she questioned this, she often felt like she wasn’t listened to. 

Through her relationship with Devrim, her advocate at Advocard, Ruth was able to see that there were people on her side and at meetings with psychiatrists, or clinicians she felt that she was able to speak up for herself because Devrim was present. Ruth also feels that having an advocate with you can change the way that you are treated or spoken to by professional bodies. Having Devrim there, made Ruth feel that there was a witness to what was said and done, and after meetings Devrim would type up minutes, this enabled Ruth to look back at exactly what was said.

Ruth and Devrim attended many meetings in connection with schooling, benefits and medication. Ruth felt empowered to speak her mind and get her point across. Over time Ruth’s confidence grew and due to her wealth of experience in dealing with medical matters, issues surrounding benefits and her personal qualities; like attention to detail, Devrim suggested that it would be good for Ruth to become an advocate.

Not long after, Ruth completed Advocards’ volunteer advocate training programme and now advocates for other people. She has supported people in meetings relating to medical matters such as correcting prescriptions.

When Ruth first came across the idea of advocacy, she could not have imagined that she would be advocating for others. Ruth is also involved in advocacy in other ways, as a member of the Advocard Management Committee; she was instrumental in re-writing Advocards’ Constitution to make it more accessible.


For more advocacy stories and case studies, see our book A Voice to Trust (pdf) and Stroke Advocacy Stories (pdf).  To order copies of these books, contact us at enquiry@siaa.org.uk or ohone 0131 260 5380.

Stand by me - A poem by Jo McFarlane

When I was broken, on my knees,
silenced by the weight of living,
on the brink of giving up,
an advocate came by
and deftly  opened up my voice
by listening, simply listening.
Soon the cage became a key,
the words ran free
and hope took root within me.

Together we unravelled all the knots,
sought clarity in breaking down the problem,
put the jigsaw back together in a workable solution.

Ready now to voice my vision
to the doctors, nurses looking after me,
I asked my advocate to stand beside me
as I still felt vulnerable and small,
faced with an impenetrable wall
of professional power.

We walked into the meeting, took our place.
I saw respect light up the faces of my gaolers
as I spoke the words, tentative at first,
then full of confidence, conviction
as they soon began to listen.
My advocate sat quietly by my side,
didn’t have to interject
but for the blanks in memory
caused by the haze of medication.

We came to a solution
which I felt I could accept with grace.
I didn’t get discharged as I had hoped
but in the course of being listened to
my gaolers had become my carers
and the treatment plan became a contract
which empowered me.

By standing with me on the journey
my advocate had helped to set me free.
I left the ward soon after with my head held high
because the roots of confidence and hope
she planted in me now had grown into a tree.

Watch Jo read her poem on YouTube 

Acting as a 'named person'
Pat was unsure of her new role as a ‘named person’ for her son, Jack, who had been admitted to the Orchard Clinic. With the help of her advocacy worker, she was able to better understand her rights within this role and how she could be involved in making decisions for her son’s care.

Working together to look through the information gave Pat greater confidence to take part in Tribunals and care reviews and to communicate any concerns she had to staff. Pat feels her relationships ith nursing staff are much more positive and she is feels confident that Jack is receiving the best care available.