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

Enhancing relationships between families and providers

By sharing her one-page profile with her brother’s support provider, Liz is able to concentrate on being a sister not a carer.  An example of how one-page profiles can improve communication and enhance relationships between families and providers.

Written by Liz Wilson

liz and tommyI am passionate about person-centred ways of working which I have used in my professional and personal life for over a decade now.  My brother and daughter both have Downs Syndrome.  Sarah Jane has grown up with the values of inclusion and person-centred thinking.  Tommy has had a very different life but a move to supported living last year has opened up his world.

About six months ago a new service provider took over Tommy’s contract.  I had been very engaged with the previous provider and began to feel quite cut out of his daily life.  I work full time and can rarely answer a call during typical working hours.  I found it very frustrating to have ‘missed calls’ with no messages or indication of urgency and worried that staff would think I didn’t care.  I am a Family Consultant at a social care provider, Dimensions, where staff share their one-page profiles with families. Working there and seeing the benefit, I realised how valuable it would be for families to share one-page profiles too.  We started doing this within Dimensions and I took the idea to my brother’s provider.  I wanted communication to be constructive and effective, and for people to value my involvement.

I sat down one evening and created a one-page profile for ‘partnership working and fluid communication.’ The profile is about supporting family relationships so I included things that build connections.

To begin with I shared the one-page profile at a review meeting and staff really appreciated knowing a bit more about me and my busy lifestyle.  I gave a copy to the regional manager as well.  I can easily tell the members of staff who have seen and read the profile and those who haven’t.  I keep a copy on the notice board by my desk at home and I jot down the new things I learn.  I plan to give an updated and visually different copy to the team every six months.  I’m going to stick the next one inside Tommy’s wardrobe door as a daily reminder for staff.

Sarah Jane and Tommy often have conflicting needs so a member of staff always supports our time together.  Support staff don’t often co-work with family members and many were uncomfortable with hanging out at home or on family trips.  Now we have a delightful balance of professionalism and friendliness which is much more relaxing.  Niece and uncle have strengthened their relationship because their conflict of interests has been minimised and I can be mum and sister not mediator!

I have high expectations about the quality of support and communication between families and services, and quite rightly so.  However, having my values and needs expressed on a one-page profile enables me to clarify my expectations. When people know what I want and expect they are more likely to give it – and if I haven’t been clear I can change the profile instead of getting frustrated and coming across as a nag.  I now get text messages that are much easier to respond to in a quick break, and voicemail helps me sort the rare urgent issues from those that can wait a day or two.  It is really lovely that Tommy now initiates visits with support from staff and I get good news, not just issues to deal with. When I make suggestions about ways of working or activities to try they are taken as offerings from a partner.  Tommy is more relaxed when we are all together.  He doesn’t use verbal communication but he picks up on tension so I can tell he appreciates the new relationships as much as I do.

Since sharing the one-page profile with the people who support Tommy daily I feel like things are more straightforward.  I would strongly recommend it as a way of enhancing the relationships between families and providers. I love that my views are being sought on things that are important to Tommy.  My role has undergone a transformation too, I feel like I can be a more ordinary sister alongside managing his personal budget and finances.

Making familylife run a little more smoothly

An example of how a one-page profile can be used in the home to help families communicate and support each other better. 

Written by Julie Malette

barbBarb is a mother of three and a single parent during the week. Her husband comes home on weekends, which changes the dynamics of the home significantly. He also has four children who visit  frequently. Barb has two jobs as well as community commitments.

Barb was feeling quite overwhelmed at home. She had recently been given a medical diagnosis that she felt her family were leaning on when she was frustrated or tired. She was feeling like she was the person that was expected to ensure the home was just as everyone wanted it…like superwoman would. Although she appreciated being valued in this role and wished she could do that, it was just getting to be too much for her to balance so she created a Mom and Wife one-page profile.

She sat down one afternoon and created the profile on her own. She took an appreciation activity they had done as a family in the past and used it to develop the Like and Admire section of her wife and mom profile. Barb printed it and shared it with all of her children and her husband. She then stuck it to the refrigerator with a magnet so it would not be forgotten.

When her children first read it they mentioned that some of it they already knew and some of it was a surprise. Her youngest son started asking before cuddling up to her on the couch. Dishes and meals were more often taken care of by others. Barb began experiencing less resistance from her children to do their chores. Her diagnosis is never used as an excuse anymore, instead her family asks if it is a bad day medically or just a rough day in general. A few times, her children have made her a nice Jacuzzi while she is out on her daily walk; when she returns it is prepared for her. Overall, the profile has really helped everyone understand that Barb is not a machine and they have more respect for her needs. Gentle reminders sometimes need to be given but for the most part it has helped make home life go much more smoothly.

Sharing a mum’s rich insight – Using one-page profiles with your child

How one-page profiles can help parents feel confident when entrusting others with the care of their children. This story illustrates the benefits of capturing the rich information that a mother knows about her child on one page to help others support, play and communicate with her children.

Written by Alfie’s mum.

alfie whiteMy son Alfie is a cheeky seven year old boy with a mischievous personality, a wonderful laugh and all the usual sibling rivalry you would expect between him and his twin sister. Alfie has Downs Syndrome and as well as receiving ‘Carers Support’ funding we have access to various activities and clubs which he loves to attend.

I first realised the value of a one-page profile for Alfie when taking him to these clubs. It isn’t always possible to tell someone all the important information they need to know about his likes, dislikes and triggers for behaviour in a conversation.  We used the profile to capture this information and share it easily with the people who would be looking after him.

As Alfie does not talk, I wrote down everything I could think about him.  At first, I had difficulty differentiating between ‘what is important to’ Alfie and ‘what is important for’ him.   I sent it all to our Family Footings Facilitator, Yvonne, who guided me and supported me to condense my statements.

Eventually I detailed on a single sheet of A4, with special Alfie photographs, ‘What I love about’, ‘What is important to’ and ‘What is important for’ Alfie.  I printed copies to hand to carers, church, school, and all his activity clubs; which included, cookery, street dance, football, acting classes, special needs group and baby ballet.

At some of the groups that Alfie attends parents are not allowed to stay and observe.  Leaving the one-page profile with him gave me confidence that Alfie would be treated as an individual even when I wasn’t there to help him communicate.

It makes a huge difference to me to know that the person caring and looking after Alfie has been given some insight and knowledge of him as a person.  They do not need to ask, “What does he like to do?”, they know.  This enables me to concentrate either on his twin sister or to use my ‘respite’ time to do what I need to do.  By having this tool, it visually reminds the people spending time with Alfie what they can do to make it more enjoyable for him.  It gives them options, if necessary, to help lead and guide him in his play and it enables them to communicate with him in a way that they know is important to and for him.

Alfie’s profile achieved everything we wanted it to achieve. It captures the rich information I know as his Mum and helps me to share it easily with others.  Even his grandparents have one and use it.  I appreciate it so much that I made his twin sister one too. She doesn’t have a disability but it saves me having to explain about her as well and she is as important to me as Alfie so it wouldn’t be right to do for one and not for the other.

I share the concept of the one-page profile with others whenever I can and explain the benefits and simplicity of such a succinct piece of information which is readily at hand.  If we have a babysitter I just give them their profiles, saying this is very useful and you will refer to it.  It gives me time to then explain routines etc.  Before knowing about one-page profiles, I was forever telling people what he did and didn’t like and although the lists were not exhaustive I would always forget an important bit and then have to ring back with “just one more thing”.  Now I know for sure that when I entrust the care of my children with someone, especially with Alfie, as he cannot talk, they can easily refer to the one-page profile and as such will be following my beliefs, wishes and respecting me as a parent and person, as well as respecting Alfie and Alice.