‘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.

Supporting patients with learning disabilities in hospital

How using a one-page profile in hospital can help medical staff support patients with learning disabilities, reducing anxiety for the person needing treatment and ensuring they get the medical attention they need.

Len's one-page profile

Len’s one-page profile

Written by Tracie Gudgeon

Ninety year old Len lives with his three best friends who he has known for 60 years. Len has a mild learning disability and after spending much of his life in an institution he moved into a supported house.

With a fun sense of humour and a warm, affectionate disposition, Len is a well-loved member of his household.  The limited contact Len has with family members makes his relationships with housemates and support workers all the more important.

Despite being in good health generally, Len recently became ill and was admitted to hospital for tests. After a couple of days on a ward Len’s wellbeing began to deteriorate. He’s stopped eating and drinking as he usually would and it was believed that his change in behaviour was because of the unfamiliar environment and people. The decision was made to send him home in the hope that he would feel more settled, but within a few hours of returning he was recalled to hospital after falling ill again.

It was then that a conversation took place with the Patient Liaison Co-Ordinator around the care Len was receiving whilst in hospital. It was obvious that although the Hospital Passport was being used, it didn’t contain the right information for the ward staff, doctors and specialists to know and understand who Len was and what individual support he needed. In response, Len’s team met and within a matter of hours produced a hospital one-page profile to ensure that Len would have the very best support during his stay.

Over the next few days Len remained in hospital but with the one-page profile at the end of his bed and sent electronically so that it could follow him around each department, medical staff understood Len and how to support him. Even the Consultant said ‘it was lovely to have a photo of Len when he was looking happy and well to see the difference in his appearance and understand how he should look.’

As someone that works to support Len, myself and the team firmly believe that the one-page profile helped in his recovery, meaning he was well enough to return back home to the people he loved much sooner. Len’s experience led to his housemates deciding that they too wanted a one-page profile, ensuring that if they went to hospital, staff there would know how to support them. We have been helping them to put these together. Using person-centred thinking tools, we have also completed a “Working/Not Working’ review with the people we support and shared this with the Patient Liaison Co-Ordinator at the hospital, who wanted to understand how she could further improve the hospital experience for people like Len.

Len is currently in good health, full of beans, and back making us all laugh. He is happy, in his own house, with his friends around him.

Senior Support Worker; better communication with colleagues

An example of how creating a one-page profile can give better insight into how others perceive you and the qualities that they value. This Senior Support Worker found the process improved communication within her team and has assisted her personally in supporting Jennie to keep updating her own profile.

Written by Zoe, Independent Options

Zoe OPPMy name is Zoe and I work for Independent Options as a Senior Support Worker to Jennie; a lovely, bright, independent young woman. I work as part of a core team of five, supporting Jennie to live in her own home.

I have worked in social care for over 14 years and previously used person-centred planning tools but it wasn’t until Jennie moved into her own flat three years ago and I met with her Circle of Support that I first learnt about how to use one-page profiles effectively. Helen Sanderson from Helen Sanderson Associates is one of the people in Jennie’s Circle as well as her family and friends. Collectively Jennie’s Circle work with Jennie and her support team to make sure she is living life the way she chooses and putting support in place to help her achieve her goals. Helen is a person-centred thinking practitioner and so helped me to understand how to use one-page profiles to get the best results.  We supported Jennie to produce her own and as I work closely with her it was imperative that I had one too.

I found it really useful creating my own profile. Not only because it would help me to support Jennie to keep updating hers, as the things that were important to her changed, but also because it helped me communicate with the other people in the team about who I was and how best we could work together. It was also very nice to hear what other people thought about me in the ‘what people like and admire about you’ section.  Honest and dedicated are traits that I hold in high regard and it felt good that people recognised these traits in me.  I was also described as zany, bubbly and with fab style – this is the other great thing about one-page profiles – as well has holding specific information about how best to work together, it also gives a personal impression; a sort of personality snapshot.  Essential if you are working in a team as close-knit as ours.

One of the most useful outcomes that came from creating my one-page profile was that my colleagues described me as knowledgeable and approachable.  As a senior Support Worker I am often the first port of call for other people in the team needing guidance. I’m not big on hierarchical structures and I don’t like titles but I do take my responsibilities seriously and it reminded me that my team did look to me for that support. It was reassuring to hear that they felt that I had the skills and personality to deliver it.

We have since produced a team one-page profile combining what we all know about each other and what is important to and for us collectively.  I am sure that these profiles have improved our understanding and communication massively – all of which has contributed to Jennie’s ongoing success as she continues to grow in confidence and has new exciting experiences.

You can find out more about Circles of Support from Community Circles Groupsite, Facebook and Twitter.

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.