Greater Independence

An example of how this man’s one-page profile has helped him gain confidence and achieve greater independence.

Earl's one-page profile

Earl’s one-page profile

Written by Cat Eglington

Forty-one year old Earl uses our services at The Manor in Brampton, Cambridgeshire. Earl has Spina Bifida and Hydrocephalus. Spina Bifida occurs when the bones and nerves of the spine do not fully develop while the unborn child is in the womb. Hydrocephalus is also known as water on the brain.Earl’s one-page profile was developed to share information about himself with anyone who comes into contact with him at The Manor. He has two profiles on the wall in his bedroom, in pride of place for all to see. One is his original colour profile and another is a copy that Earl has coloured in and drawn on himself. Both are on the wall alongside all his pictures and posters.

Earl really enjoyed developing his profile and had lots of ideas that he wanted to share. As he is such a big motor sport fan he wanted a racing car on his profile alongside a picture of his favourite drivers, Lewis Hamilton and Jenson Button. Earl’s profile was developed over a relaxing afternoon spent talking about the things that are important to him, his hopes for the future and how it is best to support him. Earl also asked friends what they liked best about him.

Within everyday life Earl’s one-page profile has been used to inform new staff and volunteers how best to support him and to understand more about Earl as a person; his likes and dislikes. The profile acts as a voice for Earl, communicating how he likes to be best supported and for staff at The Manor to understand how to fully support Earl on a day-to-day basis. His more detailed person-centred plan is available for anyone to read who would like to know more information about Earl or as a guide that can be referred to at any time.

Earl has become more confident as a person and more goal-orientated since creating his one-page profile and he clearly feels more connected to people in both a social and professional way as they can understand him better. Earl now has a girlfriend at The Manor.

Earls one-page profile sets  out the important information that people need to know to support him well such as; he likes to dress himself; he likes to get up early; he likes to be around people and he likes to read the paper. It also states what is important to him so that support staff know the food, people and activities paramount in his life.

Earl likes to be as independent as possible and he is happy that his one-page profile has helped him to do this. His support team recently helped Earl to order new equipment such as a banana board, a sling and a handling belt. All these items are to help Earl to maintain his independence.

The outcome of a one-page profile for Earl has been better choice and control. He feels empowered by the information he shares and believes that the team around him now understand him better and can help him live more independently as a result.

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Helping people live the life they choose

An example of how one-page profiles can help a person communicate their working style. Carl’s story also highlights how profiles can be used by a Quality Auditor as a review tool by assessing whether or not a provider is supporting people to achieve the things that they state as important.

Carl's one-page profile

Carl’s one-page profile

Written by Dimensions

Carl Shaw is a Quality Auditor at Dimensions. He carries out audits so that we can measure the quality of services against an agreed set of standards called Reach2; they outline what people should expect from a supported living service so that they can, for example, choose where and who they live with, how they are supported and who supports them.  As well as being an excellent Auditor, Carl has rounded experience in his field as he too has a learning disability.

As a Quality Auditor, Carl’s one- page profile has been used to introduce him to the people living in the services he audits, and the staff teams there.  In developing his one-page profile, Carl asked his family, some friends, colleagues and fellow trainees at a course he attended about person-centred reviews what they admired and liked about him. Carl got lots of feedback and decided to categorise the answers into three parts – work attributes, things that keep him on an even keel and other attributes.

Carl likes to have a good balance of home life and work life. He works 25 hours a week which enables him to feel fulfilled in both areas of his life. His one-page profile reflects this and so the people working with him are aware of this important balance without Carl having to explain it.

Carl’s one-page profile highlights that it is important to him that people we support get enough support to live the life they choose – the Reach2 standards are assessing this. In his one-page profile Carl explains that he might come across as strict in his assessment of our services, but that is because the quality of the service people experience in order to live their life is very important to him.

Carl also asks managers for the one-page profiles of the people they support. He finds this an essential tool for his job because when he visits a service he can look at the things that are important to the person, and then asses if those things have been achieved or are being worked on.

Carl also mentions in his profile that he needs support with writing and English.  He is now doing an English literacy course to help him to be able to type reports better. This is another benefit that has come out of sharing important information by using a one-page profile.

When you need to know about the person, not the condition

An example of how a one-page profile can help empower a person with learning disabilities to be more assertive and assume greater control as well as helping raise their self-esteem.

Written by Sarah Macey

Mab's one-page profile

Mab’s one-page profile

Mabs is a 49 year-old woman with a mild learning disability. She used to live with her parents but after a short respite stay in a residential service Mabs blossomed and her parents agreed to a permanent move 22 years ago. Mabs certainly knows what she wants to do. She enjoys shopping, going to Indian or Chinese restaurants, buying magazines and having the odd glass of wine. Mabs did not have a one-page profile when she moved from her parents’ house as they always structured her routines and knew her preferences.  The staff team at her new home created a very clinical profile for Mabs which focused on her specific needs, medical data and activity preferences. In early 2011, parental influence on Mabs waned due to their declining health, allowing Mabs to be more assertive and to assume control over more aspects of her life. She developed a one-page profile with her keyworker to help with this. The keyworker was encouraged to concentrate on developing a positive description of Mabs without reference to her medical or support needs. Mabs found it difficult to use words to describe herself, other than saying she was ‘gorgeous’.  She did not have the same difficulty when describing others, however.  The keyworker prompted Mabs by asking her what her mother and sister thought of her.  When this approach seemed to work, the questions were extended to include what Mabs thought the staff members might say about her. A written profile was created with a central photograph surrounded with personality words.  The profile also contained a list of the things that are important ‘for’ (to stay safe and healthy) and ‘to’ (to be happy and empowered) Mabs, the latter being far longer. Mabs’ one-page profile has definitely improved the view she has of herself.  In the ‘what people like and admire about me’ section Mabs is described as happy, thoughtful, helpful, sociable, independent, assertive, clever – the list goes on! The profile has helped to raise her self-esteem and feeling of well-being. From a staff perspective, the one-page profile reaffirms the view of Mabs as a lovely character, without the distraction of her health, behaviour or support needs.

Living with dementia – Shirley loves to feel the rain on her face

A powerful example of how a one-page profile can empower people living with dementia to direct their own support. Shirley is now supported in a way that makes sense to her thanks to the deeper understanding people have about what is important to and for her.

Shirley's one-page profile

Shirley’s one-page profile

Written by Narindra Devi and Gill Bailey

Shirley is 78 years old and a retired accountant living in Wolverhampton.  For the last five years Shirley has lived in a residential service supporting people living with dementia. Described as a strong character who is always kind and considerate, Shirley is very active and can rarely be found sitting down but prefers to be on the go, walking around and chatting to others.

As someone who has worked with numbers her whole life it isn’t surprising that Shirley still talks about and quotes numbers to people regularly. This is something that the staff who know Shirley well understand and are able to respond to. In the same way, the support staff who know Shirley well realise how important it is to enable her to freely move around and how she doesn’t like to sit still. Recently it became apparent that some staff didn’t know these important details about Shirley. She was being asked to sit down more which was causing her to be distressed and she was also getting upset when her support team didn’t converse with her about numbers and statistics; something that she loved to do.

Meeting together, the staff team realised that only a few of them knew what worked for Shirley and that they needed to find a way of sharing this information more widely so that everyone could support Shirley well. To do this they used a one-page profile. Together the team talked about all the things that were important to Shirley and what best support looked like. They shared what they like and admire about Shirley and these appreciations were all captured on her one-page profile.

The profile communicates vital information about how to support Shirley well. All staff must be aware never to try and make Shirley sit down as this would lead to her becoming very distressed and could lead to her harming herself or others. They also learnt that when giving Shirley medication they should wait for her to pass and never chase after her as this would create great distress and anxiety for Shirley. Another rich insight that is shared on Shirley’s profile is her dislike of people touching or talking about her feet. Making staff aware of this means they can avoid upsetting Shirley unintentionally.

Shirley now has more control over how she lives because the people who support her understand what is important to her. She now goes for walks outdoors as much as possible. Previously staff would have shied away from supporting her outside if it was raining but they now understand how important this time is for her and acknowledge that going out for a short time in a little rain won’t cause Shirley any harm and actually she appears to love to feel the rain on her face if her huge smile is anything to go by!!

Even new staff can get to know Shirley well and quickly by looking at her one-page profile.

Shirley is much more relaxed and content since developing her one-page profile. It is my belief that if we are to truly personalise support for people living with dementia, we have to support a way of living which makes sense to the person as well as ensuring they stay healthy, safe and well. This has been achieved for Shirley.

For more details on Gill Bailey and Helen Sanderson’s book; Personalisation and Dementia please visit Jessica Kingsley Publishers.

By regaining your identity, you release your child to build theirs

Guest Blog by Rachel Mason, Parent carer

Rachel Mason

Rachel Mason

Once upon a time, I had a live-in job at a Prep school as a boarding matron at the time. Looking after all those little ones, would get me dreaming of the day when I’d have my own.

On my nights off, my now hubby and I would  sit in the pub and picture picnics at the coast and football in the park.  We just knew we’d make brilliant parents

This was probably the last time I allowed myself to dream for many years to come.

We began our journey as an SEN family in 1989 when my eldest son Greg was diagnosed with Autism and learning disabilities at 27 months old and Shaun with Autism 2 years later. As time went on our dreams disappeared and  my life seemed to be shrinking in ever decreasing circles until I was living day to day in a reactionary survival mode. There were plenty of specialist services around our sons, delivering to their own assessed needs.

Year in, Year out we would read reports of their progress towards the ‘social norm’ but for our family it was always Groundhog Day.

We were passive passengers on this new journey that services had set our family on.

We had lost any control of our lives and  the will to dare dream of a different future than the one chosen for us.

In 2004, Norah Fry research centre and Helen Sanderson Associates (HSA) were doing a joint project piloting a 6 week  intro to person centred planning and were looking for families to participate. I joined a small group of 8 parents who were gathered gingerly in the back room of a local pub. We knew of each other in passing at parents’ evenings or school fetes but each you could see was on their own island. An isolation that had been caused by the process of service pathways, separating us from our mainstream peers, each other and our community.

When we were asked to introduce ourselves we were “Greg’s Mum, Sarah’s Mother..” we could talk for hours about them..

.. but  all of us were like rabbits in headlights when asked to talk about ourselves!

Think about it for a moment.. We had all spent year after year reliving our child’s experiences and  repeating our child’s life history for services. There wasn’t anything we didn’t know about our child. We had invested so much that it was as though we had taken on their identity!

This role left no time to be a wife, a daughter , a friend. There was no room in our preoccupied short term memory to store our own memories that we had had a life and aspirations for ourselves and our family before this.

We were taken on a personal journey that for some was quite emotional but most importantly for all, liberating.

As we talked over the weeks we realised  the way in which systems of support within services were set up, had gradually deskilled us and the ownership of  ‘any future’ we might get, now belonged to services

The aim of the course was to introduce us to some person centred planning tools and how we could use them to gain back some of that control and determine our own future  outcomes for our  family

In order to do this for our children, the facilitator wanted us to look at ourselves first. Enable us to see ourselves as individuals.  We were asked to write our own one-page profile. Believe me when I tell you – it was like pulling teeth!

It was as though we had all ‘archived’ that part of us in order not to get distracted from our advocacy role by our own hopes and dreams and also, if I’m honest, to protect ourselves from continuous disappointment when our personal goals  were constantly sacrificed.

We were all so exhausted by the system  that we had forgotten the many skills and assets we had and it was very rewarding to recall and record them.

We all left this project changed people.

For some it was an awakening to a lost identity inside themselves but most importantly it helped us all to separate ourselves from our child, enabling us to step back and allowing them to build their own.

Having a one-page profile for myself helped me to find a healthier caring/ life balance. It gave me back perspective, this in turn gave me renewed strength and purpose to work towards my own goals as well as those of my sons

Up until now I had not even thought there was a future for my son. Now I realised that not having a plan for him and constantly reliving his past whilst working with services, meant he was unable to move on as I (his identity) was risk averse and stuck in the past.

Whereas before I could not see the wood for the trees, with clear positive statements within our one-page profiles, I would see solutions instead of problems. I now saw services around my son as ‘tools and resources’ to achieve his aspirations. The one-page profile was the guide that his supporters could use along with his 247grid which I used to map his progress and where he still needed extra support. At last we felt more in control as a family.

My son’s one-page profile also supported me to have a better conversation with schools who began to see me as a partner.  We were at last  ‘Singing from the same hymn sheet’ (page 37)

I truly believe being introduced to one-page profiles changed my life and the continuing life journey we took as a family to achieve what we have to day.