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.
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