What a difference; empowered, settled and happy in school

An example of how using a one-page profile from an early age has helped Lucy express what she needs and positively influence the support she receives.  Lucy’s one-page profile has followed her through school from the age of eight and at age thirteen, it’s hard to imagine how things would have turned out without it.

Lucy's one-page profile

Lucy’s one-page profile

Written by Gill Goodwin of HSA

Lucy was placed for adoption aged two after moving to foster care just before her first birthday due to extreme neglect. Now thirteen, Lucy has settled well however the legacy of her difficult start means she can become very anxious, has some difficulties with learning and some sensory problems. Lucy has a statement of educational need and receives full time support in her local mainstream school.

Since being eight years old Lucy has had a one-page profile. At the time she was experiencing symptoms of anxiety and we had hoped that a profile would enable her to be happier and more relaxed in school and optimise her relationships and learning.I visited Lucy and her Mum at home and we talked about what made a good day for Lucy and the kind of things Lucy felt would make a difference for her. I then spent some time with her class teacher and teaching assistant in school. Putting together the profile with Lucy’s mum meant that we were able to double check that it fully reflected Lucy from her perspective and covered all the important information that people needed to know to support her well.

Almost immediately after introducing Lucy’s first one-page profile her level of anxiety reduced and in turn some of her repetitive behaviours such as adjusting her clothes and pulling up her socks. It also had a positive effect on her skills such as reading aloud and her motivation to try activities in school.

Each year we update her profile in preparation for the school year ahead. Now that Lucy is in secondary school her Special Needs Coordinator goes through the one-page profile with her Teachers and Teaching Assistants at a meeting before the year starts. She ensures all staff have a copy and that the TAs in particular know the best ways to support Lucy and enable her to have good days.  Little things like teachers smiling at her specifically when she enters the room make her feel more relaxed.  Lucy’s one-page profile means that staff are aware of the things that can make Lucy upset and ensure that situations do not escalate and that she is supported to stay calm.

As she has matured Lucy has been able to identify the kind of support she knows will help her and is confident to tell her learning coach and SENCo. For example at her annual review she was able to say why she found the support from one TA less helpful and could explain that she needed her to give information one step at a time and not give the next instruction while she was writing or thinking. Having the one-page profile, and it so clearly belonging to her, has meant Lucy seems to understand that it is her responsibility to let people know how to support her in the best way. She also knows the way to phrase things and is therefore becoming empowered to influence positively the support she is given.

School staff  in her new school have quickly got to know Lucy and what makes her tick and these close supportive relationships have been pivotal in her successful inclusion into a large mainstream comprehensive school.

Lucy has had a one-page profile for so long now that it is difficult to know how things would have been without one! Lucy is happy, settled and has all the opportunities at school and at home open to her, which is what she and her family had wished for.

Armed with a one-page profile

An excellent example of how a one-page profile can achieve what might seem like small practical changes to a person’s personal care in hospital but which can have a huge impact; improving their overall hospital experience, reducing anxiety, promoting clear communication and regaining control.

Ellen's one-page profile

Ellen’s one-page profile

Written by Ellen’s mum, Cath Barton

Ellen is my gorgeous 14 year old daughter.  She loves to dance and can light up a stage.  She enjoys spending time with her friends, shopping, chatting, listening to music and watching movies.  We all value time together at family gatherings, afternoon tea with Granny and visiting Grandma and Grandad in Scotland.  Ellen doesn’t have a disability but like all of us, has things that are important to her and ways that she wants to be supported.

When Ellen was eight, what started off as back ache soon became much more serious and within 24 hours she was completely immobile and being admitted to hospital with a bone infection in her spine. As you can imagine a whole range of emotions were experienced for both Ellen and our family; worry, fear, anxiety, confusion.

After several sleepless nights (myself and Ellen), fainting incidents (just me not Ellen), mounting stress levels and anxiety (everyone) I found myself ranting at a doctor, not about a lack of care but a lack of personal support for my daughter.  It wasn’t to apportion blame but it made me realise that they couldn’t support Ellen in a personal way if they didn’t have the information to do this.  Ellen wasn’t sleeping because she couldn’t suck her left thumb because the cannula was in her left arm but the medical staff didn’t know that this was important.

We needed to share information in a clear, concise way, without the risk of forgetting something important and to regain a feeling of control for us both in a scary environment. Being familiar with person-centred approaches I knew that a one-page profile would support us to share the information in a detailed way.  I chatted with Ellen about what made a good day and a bad day in hospital and we used this information to tease out what was important to her and what good support for her would look like.  It was quickly typed up at home when my husband stayed with Ellen and I returned to hospital feeling more hopeful, armed with good information.

The one-page profile was shared with the nurses on the ward, doctors, radiologists, phlebotomists; in fact it came with us anywhere we went in the hospital and was shared with everyone we came into contact with.

The difference was overwhelming; yes the worry, fear and anxiety still lingered because it was a difficult time but a few simple changes meant better days for Ellen and me, no further ranting from me and a feeling of achieving control and good support.  The information shared didn’t have any impact on the resources or time of the staff, just that they did things in a different way that worked well for Ellen.

Ellen was told the name of the nurse who was responsible for her that day, first thing in the morning rather than late morning.  This reassured her and got her off to a better start.  Staff knew how important it was to Ellen to take her blanket with her so she would feel comfortable in an often scary place.  They even checked it was safe for her to take it in with her when she had her MRI scans, which was hugely important as I wasn’t allowed in.  One of the most important things was avoiding Ellen’s left thumb and left arm for blood tests and cannulas.  Ellen was really brave with the many blood tests and procedures she had to have but her comfort relied on being able to suck her thumb whenever she wanted..  After we shared Ellen’s one-page profile, all the blood tests were taken on her right thumb and right arm and comforting thumb sucking was resumed.

The practical things that changed were hugely important, small differences, huge impact, which improved our hospital stay.  The one-page profile also supported us to regain control in an environment where often control can be lost and helped me to know that, although I put my trust in the medical profession, I still had a role as Ellen’s mum to advocate on her behalf and to share valuable information which improved things for everyone.  I think it also improved my reputation, that I wasn’t a ranting mum just one that knew her daughter best.

Having a one-page profile while we were in hospital made a tremendous difference and experiencing it first hand, I wanted to share the positive story.  Around the same time, at a Learning Disability Partnership Board meeting, feedback was given that someone had not had the best experience whilst in hospital.  We knew we could improve this.  So after conversations, meetings and learning more, working together with East Lancs Service User Network, family members and the hospital liaison nurse a hospital profile was developed for people with a learning disability.  This is in a standard format that is recognised by the hospital and contains person-centred information so the person can have quality support whilst in hospital.

Ellen made a full recovery after a few months, went back to dancing and continues to light up a stage.  Honestly, I hope never to have to use a profile for being in hospital again, but if it happens I know I have a resource that supports us to have a better experience.

One hospital in the north of England has introduced one-page profiles for all patients. This hospital is on a journey with Helen Sanderson Associates to embed person-centred thinking tools deep into its culture. Read more about its journey from this blog site: www.personalisinghealth.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.