‘My story’ – Having control in life and in death

Michael created his one-page profile to help him move from an NHS mental health facility into supported living and to help the people around him understand him as a person and not just his schizoaffective disorder.  This story shows how Michael’s one-page profile transcended its first purpose and helped to support him at the end of his life, enabling him to leave behind ‘his story’ in the way that he wanted it to be told.

Written by Nicola Thompson’s (Michael’s nurse)

Michael's one-page profile

Michael’s one-page profile

Sixty-two year old Michael is described as a man’s man, with great strength of character, someone who has pushed through many difficulties in his life, an inspiration to others and someone who never gives up. Michael was a schoolteacher for many years but resigned due to problems with his mental health. Towards the end of his life he lived in a community mental health rehabilitation scheme in Manchester.

Michael had a diagnosis of schizoaffective disorder and his physical health had slowly deteriorated as he had stage three kidney failure and excessive oedema in both his legs. Sadly Michael died within months of producing his one-page profile which then supported him and his family in his passing.

Michael created his one-page profile with the help of his key nurse so that when he attended appointments where people didn’t know him they would have a better understanding of who he was as a person rather than as a patient.  Michael was also being supported to move into sheltered accommodation and it was felt that the profile could travel with him and that important information to him would not be lost within his move.

It took Michael approximately two months to create his profile because his condition meant that he had prolonged periods where he was either too unwell or unable to work on it.  Together with his key nurse, Michael worked through the person centred thinking tools including relationship map, good day/ bad day, important to/for, communication chart and his formal NHS assessments such as the MANCAS.  The sessions always took place at his home as this is where he felt most comfortable. He also produced a story to accompany his one-page profile and his wish was that he could leave a copy for his grandchildren after he passed away as they were both too young to understand his illness and subsequent death. It was important to him that they knew what he was really like as a person.

When Michael started his journey no one knew that his one-page profile would be used to support him at the end of his life and that it would help him to communicate about his physical health as well as his mental health. In the weeks before his death it meant that the people supporting him had a greater understanding of why Michael behaved in certain ways.  It helped reduced frustration for both Michael and his support team and meant everyone was more patient with each other. Michael and others were finally able to accept things the way they were, rather than questioning them. Importantly, it enabled Michael to have better control over his life without having to continually explain the reasoning behind some of his more unusual behavior.

Michael was able to take his story and profile to hospital when he became very unwell.  Again it helped the nursing staff see Michael as a person and not just a patient.  The team was able to use the profile to see what was important to Michael and what was important for him, allowing for better communication and understanding.

Michael was a proud father and grandfather. His wife had passed away ten years earlier and this was still the source of much upset for him. Being able to express himself to his family and to leave behind a story and one-page profile that would help others feel more connected to him would have made Michael very happy – as would knowing that his story lives on and that you are reading it now.

Not just someone lying in bed 2B

An inspirational example of how one-page profiles can help people in hospital connect with others during confusing and difficult times. Kris had no idea of the impact her mum’s one-page profile would have, not just for them, but for the medical staff, other patients and their loved ones.

A photo of Laurine's one-page profile on the wall in  the hospital

A photo of Laurine’s one-page profile on the wall in the hospital

Written by Kris, a person-centred thinking trainer

Meet my mother, Laurine Kaiser. She has been married to my father for soon to be 63 years. They have three children, myself (Kris) being the middle child in addition to my older brother Stephen and my younger sister Kimberly. Mom was born in 1927 and will be celebrating her 86th birthday in November this year. She has always enjoyed an active life as a Mom, wife, travel companion, pharmacist, bridge player, friend and sister to a younger sister and brother who live in Kitchener.

My Mom and Dad moved in to my home in 2010 shortly after my husband passed away. We spent a few months together before my Mom fell ill for the first time in her life. She ended up at St. Joseph’s hospital in Hamilton where she remained a patient for five months. The doctors had quite a challenge for some time trying to figure out exactly what was wrong with her. She eventually ended up in the Intensive Care Unit (ICU) and spent almost two weeks there before she graduated to the Progressive Care Unit.

At that time my Mom was not able to use words and was extremely tired from the long journey she’d been on in the ICU. On several occasions nurses, doctors, therapists etc. would enter the room and ask me questions about my Mom…did she ever work, what line of work, is she married, how many grandchildren etc. That was when I decided to create a one-page profile for my Mom. Looking at this frail yet dignified and elegant woman lying there so peacefully yet so helpless I knew that I needed to do something so that people could connect with my Mom by looking and reading her profile. It was a way to humanize my Mom and value her as a person with a story to tell and not just someone lying in bed 2B.

I was excited to complete this one-page profile for her, knowing that this would make a positive difference in her life. I created the profile in one night with a dollar store bristle board, a black magic marker and a few photos of her along with the joys in her life.

When I returned to the hospital the next day I couldn’t wait to put it up! My Mom was thrilled with it and stared at it for hours. She would smile and point to people making kind gestures. The nurse came in the room that afternoon and read the board and quickly pointed out that my Mom’s favourite TV show was Big Bang Theory which was also hers. She remarked, “I’ll put it on the TV for her tonight at 7:30. Mom gave her the biggest smile.

Word seemed to get around the floor and the hospital about my Mom’s one-page profile and soon other patients’ families and friends on the floor were asking to see it, vowing to create one for their loved one. It just seemed to snowball with positive remarks from all. Close to the end of my Mom’s extended stay at St. Joseph’s the administration team came to have a look at the profile and said that they should introduce this in their hospital. That was a great day!!

Doing the one-page profile for my Mom made such a difference in her mental and physical recovery. Having this tool created a way for others to have a conversation with Mom and it also provided information about her interests and hobbies which often was a source of some great chats with people she met at St. Joe’s.

I’ve always known that the one-page profile works however I didn’t know the impact it would have on so many people and their loved ones.

 

Seeing clearly at last

An example of how introducing one-page profiles onto a busy hospital ward helped Norman express what was important to him and get the help he needed.

Norman's one-page profile

Norman’s one-page profile

Written by Michelle Livesley

I’ve been working with Spiral Health at their forty-bed rehabilitation Unit, Bispham Hospital helping them to introduce one-page profiles on the ward and it was here that I met Norman.

Norman was not particularly happy when he first came to the ward. He seemed agitated and irritable and desperately wanted to be back in his own home. Hospital is a big upheaval and it is common that people miss their home comforts but it seemed to run deeper than that with Norman. Using the one-page profile template we started to explore what was important to him and how best we could support him during his stay.

Through this exercise we uncovered that the bulk of his unhappiness was related to not being able to see properly to read as his prescription glasses were no longer strong enough. In particular he was finding it hard to read the menu which meant he was frustrated at meal times but had been too proud to say.

Nurse Fran, who I’d been coaching through this process with Norman, made a note on his one-page profile about his eyesight but at first felt unsure about how to help. The unit does not have access to optical services so keen to find another solution – Fran took the information to her Nurse Lead who knew exactly what to try. She had been given a large bag of unwanted spectacles and she and Norman went through them until they found a pair that was just right. Not only did this 20 minute session find Norman a pair of temporary glasses to improve his experience in the short term but it helped him feel understood and valued; a great result.

All patients’ one-page profiles at Bispham are written on a board above their bed, visible to everyone and can be added to as relationships and conversations develop throughout their stay. They provide essential, easy to read information about the person rather than the condition. For Norman, having a one-page profile meant that he got the support he needed to feel happier and more independent during his stay in hospital.

You can read more about Spiral Health’s personalisation journey by following the personalising health blog.

Four steps to using one-page profiles in hospital

Written by guest blogger Tracey Bush, Managing Director of Spiral Health CIC

Read Tracey’s one-page profile

Tracey Bush

Tracey Bush

I was trying to explain to someone today about what it means to be a Community Interest Company in the health service. We are in fact the only hospital of our kind that operates in this way in the UK and as such it makes sense for me to talk about how this makes us different. It is these differences that have driven our push to be person-centred and to embed one-page profiles in our culture.

The easiest way to describe it is to compare us to an Academy in the education sector. Whereas most schools are funded and follow the protocol set out by their local authority, Academies have more freedom to use their budgets in the way that suits their individual school, teachers and pupils. We operate within the NHS but our CIC status allows us to direct our resources in the areas that we have identified as most important. A good example of this is how we have links with local schools and provide teaching on hygiene and infection control as a preventative measure to illness. We can do this because we have prioritised this type of community work and we therefore make it happen.  Our CIC status means we can be innovative and creative in our approach whilst still being part of the NHS.

I’m a qualified nurse and for 17 years I worked at a senior level within social care, moving back into health in 2012 when I joined Spiral as Managing Director. My background in social care gave me a good understanding of the results that can be achieved through person-centred practices and I have been using one-page profiles personally for over eight years.

Our hospital provides rehabilitation and health care for up to 40 people at a time. We take referrals from other hospitals and support our patients to return back to their own home and life in the way that works for them. This sometimes requires intensive physiotherapy, or extended medical care but in every scenario part of the recovery is about instilling the person with confidence and empowering them to recapture their independence. It is this part of our role that makes using one-page profiles so vital.

One-page profiles capture the important information about a person, aiding better communication, understanding and support.  In social care we would invest a great deal of time producing profiles with people and these would form the bases of a person-centred care plan and then regular person centred reviews. For obvious reasons this exact formula couldn’t be replicated in a hospital setting (the transient nature of patients, staff and visitors to name a few) but we wanted to make the tool work for our patients, to improve their experience and enable us to support them well as individuals. We worked with Helen Sanderson Associates to develop a person-centred journey and it was part of this process that highlighted the need to introduce a way of capturing rich information about our patients using one-page profiles. This is what we have learnt:

1)      Understand your environment and your team: People who have worked with one-page profiles before or who have experienced the benefits personally know that they are powerful tools for aiding communication, understanding and providing personalised support. It isn’t easy though to introduce any new way of doing things into a well established environment or team and you need to have an excellent understanding of what is in place in order for it to work.  Being person-centred is something that most healthcare professionals see as part of their role and it can feel strange to them to formalise it. We found that by using tools such as working/not working and by developing a one-page strategy we were able to identify existing practices that would be enhanced by using profiles.

2)      Be realistic: Some of our patients might only be with us for up to five days and it would be unrealistic to develop a profile as detailed as you might see used elsewhere. The solution is to decide what information is most important to capture in order for us to support that patient to the best of our ability. We have found that by using whiteboards behind a patient’s bed we could note the information that is important to and for them and add to it throughout their stay.

3)      Listen to the feedback: Aimlessly introducing a new process without validating its worth is sure to get peoples’ backs up. Very early on we started to collect feedback from patients and their visitors about the use of the one-page profiles. We wanted to know whether by understanding them better as individuals we had improved their hospital experience. Learning about someone’s love of animals or favourite TV programme can lead to great conversations and better relationships, not just between patients and nurses but amongst each other and visitors. Taking the time to sit with someone and ask them what is important has led to some rich insights and enabled us to make support and care decisions based on the individual and not just their condition.

4)      Coach Coach Coach: We have found the most effective way of embedding one-page profiles into everyday life in a hospital is to coach nurses on the ward to produce them with patients. It isn’t always easy to imagine something working in practice when learning about it in a classroom setting. By having person-centred thinking practitioners sitting side-by side with our nurses, they have found the approach that works for them. A one-page profile might only take 20 minutes to complete but the quality of the information will enhance the patient’s support for the duration of their stay and beyond.

One-page profiles are the cornerstone of person-centred thinking and by using them, we are committing to knowing and supporting each and every one of our patients well and as an individual. In our case this has formed part of the larger person-centred journey, and is just another one of the ways that we are able to work innovatively for the benefit of the people we care for.

You can read more about Spiral Health’s patient-centred journey and their pioneering approach to health care in the blog Personalisation of Health Services.