One-page profiles during long hospital stays

Several years ago Shelley Dumas was involved in a terrible car accident.  She was very seriously injured and used a one-page profile during her long hospital stay.

 Written by Shelley Dumas

Shelley Dumas YouTube Video

Shelley Dumas YouTube Video

Laura Buckner developed a one-page profile for me during my 5 month rehabilitation hospital stay after an automobile accident.  The focus of this  was supporting me in the hospital environment, including what people liked and admired about me and what was important to me at this time.  Laura asked several friends to send their thoughts about what they liked and admired about me (really lifting my spirits).  Then she spent time with me, asking what was important to me and how staff and visitors could support me during my hospital stay.

I observed doctors, nurses, technicians, therapists, aides and visitors stopping to read the large (11×17) laminated purple profile posted in two places in my room.  They were hard to miss.  I began to notice a difference in these people’s perceptions of me and they began to talk to me about the information in the profile.

One doctor said, “this should be in everyone’s room.”  A registered nurse and professor at the local university nursing school asked for a copy so that she could include it in her courses. Everyone would stand, read and re-read it when they came in or left my room.

It was working!  One of the ways it helped me was by communicating to everyone how important it was to me to have all my necessary items in reach. I had learned very early that I must have my cell phone, nurse’s call button, TV remote control, and my bed tray close by. These items were my security system and kept me in positive control of my life while I was there. Because of my one-page profile, people visiting me and staff would always check that they were in place before leaving my room.

All of the professionals began to know me as someone other than their typical patients and I developed several relationships that have remained in place even three years later.  The importance of having the one-page profile posted in my hospital room was unbelievably helpful during one of the most stressful times in my life.

You can watch a Youtube video of Shelley talking about her hospital experience here.

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What he can do, not what he can’t do

An example of how this mum has used one-page profiles to support her son well at school and to ensure that the family’s relationships with health professionals are equal and balanced. Marianne wanted to introduce her son by describing what he could do, not what he couldn’t do; the one-page profile was the perfect tool.

Written by mum Marianne

Alex's one-page profile

Alex’s one-page profile

When my son Alex was about to start pre-school I knew there would be things about his support needs that I needed to be able to communicate to his teachers.  However, I really didn’t want to introduce him or for him to start school life with a long list of things that he needed help doing. I wanted the new people in his life to meet him as the cheeky, funny, confident little boy that he is.

Alex has Down’s Syndrome and from the very early days it has felt like professionals can often be more interested in what he can’t do rather than what he can do. I just didn’t want his education experience to be the same.  Unfortunately it already felt like it was going to be. I found myself filling in statements of special needs for his assessments and I realised how easy it would be to fall into this mindset. I wanted to counterbalance this with positive statements. Starting school was a massive milestone for Alex and I was determined to start him off on the right foot.

Alex’s one-page profile sets out how we want him to be treated, what is important to him and how he wants to be supported. We had used the same profile when Alex attended a short term respite centre and had a very positive reaction, with staff feeding back that it really helped them to understand him.

Using a one-page profile with Alex and his school means that we can be sure that we are presenting him in the best way and have the confidence that people will support him well.  Alex loves playing with his friends, tasty snacks, TV programmes, bubbles, singing and playing with water. He can need support when eating – to be reminded to slow down, he doesn’t understand danger –  so needs people looking out for him and he uses Makaton to communicate so it is essential that people  use this method with him.  His one-page profile covers all of this and much more and is in a simple easy-to-read format so can be picked up and understood quickly.

We update Alex’s profile every  year and I love charting his development and growth in this way.  Each year we see he finds new interests and discovers greater independence. My favourite part of updating his profile is talking to his classmates about what they like and admire about Alex. It is so nice to hear that he is well liked and fun to be around.

Since using a one-page profile with Alex and realising its potential I have introduced one for our family too. We find that we interact with so many health professionals, it sets out how best those relationships can work for us. For example, it is easier for us to have meetings on Thursdays and we prefer to have the opportunity to review paperwork in advance of the meeting. Setting out our stall in this way is empowering. It puts us on a more equal footing and as such we are in a stronger position to advocate for our son.

The cancer wasn’t going to control me

Madge's one-page profile

Madge’s one-page profile

How one-page profiles can help people living with cancer to communicate with family, friends and professionals how best to support them.

Written by Gill Bailey 

Madge, 67, lives on the Fylde Coast. She is full of fun, a great story teller and very sociable. She has three children and four grandchildren. Her family are her life and Madge gets a great deal of pleasure from her grandchildren who range from six to eleven years old. Madge’s daughter Sally and her son Ian live nearby with their partners. Her other son Sam lives in Australia and Madge talks to him on Skype every weekend.

One year ago Madge’s world changed irreversibly. She was diagnosed with cancer of the oesophagus. Two months after receiving her diagnoses Madge underwent major surgery. On a bad day, Madge struggles to get out of bed. She often has to use a wheelchair to get about. She struggles to eat and enjoy her food and finds it difficult to sleep. Madge’s illness has taken its toll on her physically. She has lost three stone in recent months and her mobility is suffering more and more. But it is the mental and emotional impact that her diagnosis has had on Madge and her family which she finds most upsetting. Madge is a strong, intelligent, independent woman and watching the people she loves worry after her, seeing the concern in their eyes as they watch her eat or fretfully ask after her wellbeing has been incredibly hard. Madge needed to find a way of managing her condition, her emotions and those of the people close to her. The cancer wouldn’t go away but Madge wasn’t going to let it take control of her life.

We introduced person-centred thinking tools and specifically a one-page profile to Madge so that she could explore and communicate what was important to her and how best people could support her. As well as helping Madge to talk openly about her hopes and fears, she was able to specifically address some of the things that she found most frustrating about her condition and in turn how people could help her to manage this.

Madge developed a one-page profile and shared it with family and friends but also with medical and support staff who needed to understand Madge better in order to care for her in the way that she wished. In her one-page profile, Madge highlighted the importance of her family, the set time that she spends with them and the regular skype chats that she has with Sam each week. She noted her weekly luncheon club and card games with her friends. She described how important it was that people continued to share their good news with her because it helped keep her spirits up and how staying out of hospital was something she strived for daily.

Once she had stated the important things in her life, Madge was able to clearly say how people could support her to stay happy and healthy. This included helping her with the technical side of the skype sessions. Knowing that she was embarrassed by the wheelchair she sometimes had to use. Not making a fuss or cheering her on for clearing her plate when eating. Understanding that hospital appointments made her anxious and so organising the logistical side of it first and then letting her know who would be coming with her and when helped..

The one-page profile, together with other person-centred thinking tools, has been used to review Madge’s care and plan her support. It has helped the people closest to her to focus on the positive things they can do to support her, something which is incredibly difficult when dealing with the sadness of cancer and the changes that it brings. Madge’s family and friends remain the most important parts of her life and she is choosing to spend her time with the people she loves. She won’t stop laughing and she won’t let the cancer stop her living her life the way she wants to live it.

To create your own one-page profile and use other person-centred thinking tools to help with your cancer or long term health condition journey you can visit the think about your life website.