Breaking down preconceived ideas

An example of how one-page profiles can be used to introduce the person rather than the diagnoses.  Alfie’s dad talks about how his son’s profile has helped people get to know him and all of his positive traits rather than just his diagnoses of Aspergers.

Alfie's one-page profile

Alfie’s one-page profile

Written by Damien Nolan, Alfie’s dad

Alfie is our ten year old son who has had a formal diagnoses of Aspergers Syndrome since he was three years old. Alfie is a great boy with a big heart and loving demeanor.  He is very cuddly in an innocent kind of way. His friends and family are incredibly important to him and he is obsessive with all things transport related.

I decided to help Alfie produce a one-page profile after attending a person-centred approaches course run by Yvonne Linton, Family Footings Facilitator.  I thought it would come in very useful to show to teachers, doctors and people new to Alfie, so that they could gain a quick understanding of who he really is as opposed to seeing him only for his diagnoses.

Alfie and I talked through his one-page profile. I wanted him to be happy with the picture that his one-page profile would paint and for him to feel that I had got his traits and passions correct. He also chose the photos to be included which he really enjoyed.

Since making the profile we have used it at every opportunity. It has been particularly useful at school when meeting with new teachers or teaching assistants that might not have worked with Alfie before. Alfie likes to be included in class and gets upset if he feels left out. He needs a lot of encouragement at PE and he needs to know well in advance if there will be a change to his timetable. As well as communicating this vital information, Alfie’s profile has helped his new teachers get a good feel of who Alfie really is (all his lovely traits) and be at ease in terms of how to support and interact with him.

Has having the one-page profile made a difference? Well I like to think so. It’s nice to involve Alfie in how the world will see him and hopefully break down some preconceived ideas that people might have about a boy with a diagnoses of Aspergers.

Most recently I used the one-page profile at a Transition meeting with a SENCo from Alfie’s new secondary school which he starts in September. I don’t think she had seen one before and she took it away with her which was great. Especially as it was the first time she had met Alfie and it gave her some points to talk to him about, ensuring they got off to a good start. Once Alfie starts secondary school I will make sure that all his new teachers take a copy.

My hope is that by using the one-page profile more and more, the people who come into contact with Alfie will quickly get to know the ‘boy’ rather than the ‘label’ of Aspergers.

You can find more examples of using one-page profiles and other person-centred thinking tools in a school setting from this website www.personalisingeducation.org

Advertisements

Christmas for Carol

Image

How using a one-page profile to help someone communicate what is important to them at Christmas and what support they need, can lead to a happy festive period – and some good learning for support providers too.

Carol's one-page profile

Carol’s one-page profile

Written by: Tracie Gudgeon

Fifty-seven year old Carol shared her bungalow with best friend Katie for many years. Both lively ladies, together they would love to chat and share stories or local gossip. But when Katie sadly passed away, Carol’s life changed. Not only was she grieving for her friend but she was also finding it hard living alone. Despite having a close family who regularly visited, carol was lonely.

Carol’s first Christmas without Katie was particularly difficult. Carol loved Christmas, her birthday is in the festive season and she was named Carol for that reason.  But she wasn’t her usual bubbly self and her family worried that she seemed very flat.

When I was asked to carry out a review with Carol, her family and support workers we talked about how important it was for Carol to have a happy Christmas to look forward to and that we needed to understand how best we could support her in that. Someone suggested that we helped her to write a Christmas one-page profile that could be shared with her family and friends so that everyone knew how to help make it a happy occasion.

Together, Carol and her senior support worker sat down and thought about what was important to her and how we could ensure good support at Christmas. The plan was very detailed and even considered who in her team was the best cook. There is nothing worse than a badly cooked turkey at Christmas! During this time Carol was also introduced to Molly, a lady who was interested in living in the same village. In the lead up to Christmas, Carol and Molly got to know and like each other and on the 21st December Molly moved in. This turned out to be the best present Carol could have wished for.

The one-page-profile was really important to Carol as it supported her to have exactly the Christmas she wanted. A great deal of learning took place for us as a provider too. We realised that far too often we organised Christmas rotas based around what we wanted; when we wanted to go Christmas shopping or when we wanted to work, without thinking enough about who the person we support wants in their home on such a special day.

Carol shared her Christmas one-page profile with her family; this gave lots of reassurance and helped them to celebrate it in the way that made her happiest.

Carol and her new friend Molly had a good Christmas together and are already looking forward to this years..

Is this care you would be happy with?

It started with a person-centred thinking course attended by Sue, the care home manager and now Sam, the people he lives with and the people who support them are on a life-changing journey. An example of how this man’s one-page profile has led to him reigniting old relationships and hobbies; making him feel like he has a purpose again. 

Sam's one-page profile

Sam’s one-page profile

Written by Gill Bailey

Sam is 78 and lives in a residential care home supporting older people on the Fylde Coast.

The manager, Sue, went on a person-centred thinking course and decided that things in the care home should and could change. She knew this required a huge shift in culture. This shift began with uniforms no-longer being worn, to create a more ‘family feel’ and a no ‘them and us’ culture. Toilets became communal – so there were no separate staff toilets, no staff mugs and sitting and eating with people who lived there became the way things were done.

Sue’s enthusiasm was contagious and the majority of the staff team are now competent in using the person-centred thinking tools. Each member of staff was taken off rota for two hours and asked to simply sit in the lounge in order to feel, hear and see the ‘lived experience’ of the people they supported. They were then asked “is this care you would be happy with?” The resounding answer was ‘no’ and so the desire for real change began in earnest.

They began to develop one-page profiles with everyone who lived in the home and staff developed their own which included their hobbies and interests . Sam who lives in the home developed his one-page profile with help from Sue.

The main thing that wasn’t working for Sam was that his friendships had all been lost after spending three months in hospital and then coming to live in the home four years earlier. Sam particularly missed his connection with the crown green bowling club he had belonged to for a number of years – he had lost all contact with his old mates.

Sam was supported to write to some of his old friends and as they responded, he gained the confidence to think about how he could reconnect with the bowling club, which wasn’t far away from the home. There was a spring in Sam’s step as he anticipated the possibilities.

The challenge now was finding the right staff member to support Sam to go and watch the bowling. Sue found that Greg, a new member of staff, looked the perfect match for Sam, as he too was a keen bowler. Sam agreed. Within a month, they went off to the bowling club together. Sam cannot bowl because of his hip injury but enjoyed catching up with his old friends, while Greg would play a few games. After a couple of months, it was as though Sam had never been away. Greg and Sam went once a fortnight.

Sam now writes the monthly newsletter for the bowling club. Prior to retiring, Sam was a keen writer and produced the church newsletter each week, so he feels that he is giving something back.

Sam’s life feels very different now and as he said recently, “I’ve got something to get up for, meeting the lads and I’m working on a newsletter”. This all began by listening well to Sam and developing his one-page profile with him. The information it captures is used by all those involved in Sam’s support to ensure that he is living life the way he chooses.

Read more about personalisation and dementia including blogs, resources and related media articles at www.personalisationanddementia.wordpress.com

Decisions are Jennie led, not service, organisation or support worker led!

An example of how one-page profiles can change perceptions and attitudes as well as supporting a person with autism and learning disabilities to make positive changes, growing and adapting with them through life.

Jennie's one-page profile

Jennie’s one-page profile

Written by Suzie Franklin

My daughter Jennie is twenty-two years old.  She has a great sense of humour, is affectionate, creative, honest, determined and fun to be with. She has a lovely home, close family and friends and enjoys art classes, horse riding and trampolining.  Jennie used to be described as ‘challenging’ until she started using one-page profiles and positively changed her life and the way people perceive her.

Jennie has autism and learning disabilities and has worked hard to achieve her independent lifestyle. The one-page profiles she has used over the years have helped her to do this by communicating what is important to her and how people can support her to do what makes her happy and healthy. She is a very impressive young woman.

Jennie’s first one-page profile was used as a ‘top tips’ for everyone in her life to get to know her better, provide consistency in support and communicate with Jennie in the way that was best for her. At the time, Jennie wasn’t able to dictate much verbally but her voice ran throughout and we produced the one-page profile using our in-depth knowledge of what was important to her and how best to support her by closely watching her behaviour and what it was telling us.  It was shared with the rest of her family and everyone who supported her as well as teachers, social workers, doctors, coaches, instructors and even her hairdresser! People who saw it commented on how useful it was and some even helped add to it by saying what they liked and admired about Jennie.

One of the things we realised when we started using person-centred thinking tools with Jennie was that despite having a fun seeking personality she had few friends of her own. Most people outside of her family were paid to be in her life. Having a one-page profile and identifying what was important to her has empowered Jennie to try new activities and develop new friendships. It has put her in the driving seat to make more choices in her life. Jennie even used her one-page profile to show to prospective support staff when she was picking her team for her new flat. It gave them an easy to understand picture about Jennie and meant that she was able to communicate very early on how best they could support her.

As Jennie’s independence has grown living in her own home, the one-page profiles have changed with her. What is important to Jennie and how she needs supporting has changed significantly but this has all been led by Jennie and the people around her keeping her profiles accurate, up to date and always reflecting Jennie’s voice.

Having one-page profiles has enabled Jennie to truly be in control of her own life. Decisions are Jennie led, not service, organisation or support worker led! Importantly, they have also changed the way Jennie is introduced and perceived. Jennie is no longer referred to as ‘challenging’. Now she is described as happy, active and independent. Thanks to Jennie’s one-page profile her positive reputation precedes her and the things that are important to Jennie are kept at the centre of everything that she does.

Suzie Franklin and Helen Sanderson have written a book about Jennie’s  journey, her transition to independent living and her Circle of Support. You can find out more about the book from HSA Press.

Seeing through the fog of grief

A moving and powerful story about how a one-page profile helped one woman find her voice when grieving the passing of her much loved husband. 

Written by Julie Malette

Monique's grieving one-page profile

Monique’s grieving one-page profile

Monique was 64 when her husband of 44 years Gaëtan passed away from an extremely aggressive cancer.  She and Gaëtan were in the process of selling their home and moving into an apartment when he was diagnosed and then passed away. 

Monique was a retired school administrative assistant and Gaëtan was a retired teacher.  They were selling the house in order to have more money to travel and enjoy life.  They had lifelong friendships with other couples they either met in high school or met early in their careers.

When Gaëtan passed away, Monique felt not only lonely from the loss of her husband but also hurt by the absence and lack of support from some family members and more importantly from the lack of support from some of their friends.  She understood that they were also grieving and that it must be awkward for them as couples to visit or invite her for visits but the loneliness and hurt was unbearable.

Monique’s daughter received a one-page profile example from a Person-Centred Practices colleague who had lost her husband.  She shared this example of profile developed to help family and friends understand what is important to the person in the grieving process and how to best support them.  That night, Monique went home and developed her own one-page profile and the next day her daughter typed it up for her and added a picture.

Writing the profile helped Monique sort out the different feelings she was experiencing and better understand what was important to her during this difficult time and what support she truly needed and wanted while she was grieving the loss of her husband.  Monique said that putting pen to paper was what helped her see through the fog of grief and understand herself and the situation better.

Monique chose to share the profile with her sisters (not her brothers) as well as a few close friends.  She was surprised at some of the reactions.  Many thanked her for sharing the profile because it helped them understand how to better support her.  A few others didn’t seem quite sure what to do with the information.  One friend in particular didn’t say anything after reading it and Monique was saddened by it and the disappointment made her contemplate letting go of the relationship.  A short while after this experience, this friend started visiting Monique and invited her for a meal.  Sharing the one-page profile with this friend actually saved the relationship.

Many people are hesitant about sharing stories and talking about the person who is deceased.  Monique needed and desperately wanted to talk about Gaëtan.  Writing a one-page profile helped her talk to family and friends about this need, even if she didn’t always share the profile with them.  The profile helped her find her voice.

You know me so well!

Written by Victoria Metcalfe, Dementia Consultant, Anchor

Victoria Metcalfe

Victoria Metcalfe

I had a birthday this week. It was one with a zero in it… I sat nervously in my living room all day, responding to birthday well-wishers by text and email, dreading the possibility that one of my nearest and dearest might have had the bright idea of throwing me a surprise party. I hate surprises. I love surprising other people – but I’m awful at being taken by surprise. Thankfully, this message must have trickled through somehow and it seems I needn’t have worried; my friends know me well!

Knowing someone well is the focus of a big piece of work I’m involved in at the moment. I’m a Dementia Consultant working for Anchor and we have been looking at how one-page profiles can be used to ensure that the people that live and work in a care home can really know and understand each other well. One-page profiles do much more than this of course. They help people with common interests and outlooks be matched together, they communicate important information for people who might not be able to communicate it themselves, they empower people to direct their own support and live the life they choose, but ‘knowing someone well’ really is at the heart of the concept.

Over 25 years ago I had a chance encounter with a young man who had Alzheimer’s . He changed my outlook on life. I can clearly remember to this day my first meeting with him and how distressed he seemed about being unable to communicate with the people around him.  I remember those same people equally as clearly and how little they were attempting to engage and understand him. They saw him as a bunch of symptoms not a person and it was incredibly sad to realise.  My overriding feeling about this was one of injustice and it is the injustice of people being marginalised or defined by their illness that still motivates me today to be person-centred in everything I do; to have empathy, compassion and most importantly of all, to care about knowing people well and basing support on this in-depth knowledge of them.

I’ve never had a planned career path – it just wasn’t something that I set out for myself. But I’ve been working with people with dementia for more than 25 years now, with social services, with the Alzheimer’s Society and for the last 13 years with Anchor. I knew when I joined Anchor that I agreed with and believed in their organisational values but it is the people I work with and their relationships with the people we support and their families that has made this job so worthwhile for me.

Anchor is the largest not-for profit provider of support and housing for people over the age of 55 in England but that’s not what makes us special. We are special because we believe in seeing and treating people as individuals. We provide person-centred care and moreover we want to improve on this further, embedding person-centred thinking deep into the culture of our organisation by making tools like one-page profiles commonplace for colleagues and customers.  We believe in doing with a person not doing for them. In supporting family and friends to adapt to a person’s changing abilities and always focusing on what they can do not what they can’t do. In a world that can see older adults as broken people, our celebration of people’s individual talents and gifts and determination to support them to live the life they choice is something I’m really proud to be a part of.

My own one-page profile describes what people like and admire about me, what is important to me and how best to support me. Needless to say I have included in it that I don’t like surprises – something which my friends might know about me but might be useful for a work colleague to know too. I’ve already changed my approach to team members after reading their profiles and understanding them better. It’s strange, you can work with someone for years and think you know them so well only to learn important information that you just hadn’t uncovered before – this is the power of the one-page profile; the succinct way it communicates the essential information to enable relationships, collaborative working and support.

This week I’m attending the annual Dementia Congress. I’ve spoke most years but this time I’m going just to soak up the information, to learn about the new and innovative ways people are transforming care for people with dementia, to meet colleagues and share best practice. I’ll be shouting from the roof tops about one-page profiles and how this relatively untapped resource could revolutionise care for people with dementia. I believe that the one-page profiles that we are introducing in Anchor really will change people’s lives;  helping people with dementia live a life that makes sense to them in the way that they want and all based on a deep understanding of who someone is and what is important to them. Everyone should be able to say ‘you know me so well’ and soon they will!

Look around the rest of this site using the menu bar at the top of this page to learn more about one-page profiles, how to create your own and to read stories from people using them from birth to end of life.