A snapshot of me

An example of how this one-page profile has helped Mark direct his own support. Ensuring that the people in his life are introduced to, and therefore connect with, his positive traits as well as understanding how best to work with him to do the things that he states as important.

Mark's one-page profile

Mark’s one-page profile

Mark is an intelligent 62 year old man who prefers to initiate conversation or physical contact with you. He will approach you if he wants to hug or talk to you. But he can become agitated if he’s not in the mood to interact. Mark sometimes uses Makaton (speech, signs and graphic symbols) to communicate but he’ll understand if you ask questions and use short sentences.

His one-page profile was developed to share basic snapshot information needed to support him in the best way possible because he has some behavioural patterns that can be avoided if the correct measures are followed. Whether at home or out and about, he prefers to be served food and drink before others and likes to have things done as quickly as possible. We provide support staff with more detail in his behavioural support plan.

Mark is not in contact with his family, so all decisions are made through his support workers, advocate and his Social Worker. This is also how we created his one-page profile.

All support staff, agency staff and relief staff have read the document. It is kept with Mark’s support plan and also on his bedroom door. The profile is updated every three months. It shares the things that people like and admire about Mark, such as his generosity, helpfulness, his sense of humour and the fact that he blames the cat for everything. As well as capturing the information people need to know to support him well, it also presents these positive attributes so that people can connect with Mark on a personal level.

All staff members are fully aware of Mark’s support needs after reading his full support plan. But Mark’s one-page profile has enabled support staff to really focus on what is important to him and the copy on his bedroom door constantly reminds them of this. For both Mark and his support workers this is a great help because it informs them of his weekly activities alongside his daily planner. It is extremely important to know how and when to initiate contact with Mark as this can determine Mark’s reaction and cooperation.

Overall the one-page profile has proven itself to be a great tool in providing as much information as possible about Mark in a very short but detailed document. It is very useful for relief/agency staff members who only have a limited amount of time to find out as much information as possible about Mark and to support him in the right way.

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

Finding dad’s voice after his stroke

A powerful example of how a one-page profile can help someone who has suffered an acute stroke to communicate how best to support him as well as helping his daughter advocate on his behalf.

Written by John’s daughter, Lisa Orme

chipMy dad, always known as ‘Chip’ was 65 when he suffered an acute stroke. It was in April 2012 and he experienced a massive bleed on the right side of his brain. He was admitted to the Derby Royal Hospital. It was one of the most fearful days of my whole life. I knew then that things were going to change forever. What I didn’t know, was that we were about to embark on a person-centred journey and that I was no longer just going to be his daughter, I was going to need to be his advocate too.

Dad lost his voice, his normal bodily functions and his pride that day. The first 24 hours were the hardest. Dad could only nod or shake his head and it was down to me to interpret this and advise the nursing team on his behalf. It was heart breaking and frustrating but I had a coping mechanism. I knew about person-centred thinking and used my understanding of him and the tools I’d learnt to advise the nursing team how best to support him. This was particularly important because I couldn’t be there all the time and it was essential that they were still acting on his wishes without me there to advocate them.

Every day in hospital highlighted another challenge for us. I sat with dad talking through his communication and decision making approaches identifying with him what he understood and what he wanted to share. He was able to nod or shake his head enabling me to capture his thoughts into his one-page profile. Once it was completed I shared this with the immediate nursing team. Every day I reviewed the one-page profile with Dad and my Sister to ensure we added new information gathered from his rehabilitation handovers.

I placed Dad’s profile laminated by the side of his bed as well as giving it to sit alongside his care plan. Nursing staff began asking me about our approaches and quickly recognised what was important to dad. Importantly they recognised when he chose not to engage with them as this remained in his control.

Helping dad to remain in control of his situation was my priority. His profile enabled this to happen. Chips connection to his family and the nursing team was so important in the seven weeks he was on the ward. Relationships were developed as the nursing team read and understood more about him from his profile. They learnt to engage with him using the information to promote conversations, laugh, joke, make him smile when he was having a bad day.

Despite his stroke dad was making choices and had capacity. Staff understood what made him more settled and more importantly they understood how he wanted to be supported. The one-page profile quickly progressed and became more detailed ensuring the right decisions were made when agreeing his continuing health care funding for his future nursing care.

Dad was going into a home in the centre of Derby. It was near to his friends and the places he grew up. I felt satisfied that dad would be happy there and made sure I shared pictures and information about the home with him to help him prepare. Sharing dad’s one-page profile with the nursing manager really helped me to engage with the assessment and referral process. It meant that I could clearly say what his needs were and ensure that they had the capacity to support him in the way he wanted to be supported.

Dad’s stroke had been incredibly sad for the whole family but throughout the journey I have been able to support him and help him to communicate by using the person-centred thinking tools. The nursing team briefly knew Chip. To me he will always be dad.