100th #OnePP: In my own words; how a one-page profile helped me

Jenny Carter is a self advocate. As someone who has autism, Jenny found that she was often misunderstood and not always able to get her point across in her work life and in social situations. She wanted to create a one-page profile to help her overcome these difficulties and better advocate for herself and others. This is Jenny’s story in her own words.

Jenny's one-page profile

Jenny’s one-page profile

Written by Jenny carter

My name is Jenny Carter I am 30 years old and I have Autistic Spectrum Condition, Dyspraxia and Epilepsy. Being on the Autistic Spectrum affects me in many ways and can mean that I perceive situations and people and respond to them differently to the way one might expect. For example, in social situations I am very direct. In the past I have gotten into trouble for saying things the way I see them. As I mean no harm when I do this, it can make me feel frustrated or upset when people take it the wrong way.  On the positive side, seeing things differently means that I have a unique perspective on the world and this means that I can sometimes see things before they happen!

I live with my Mum and Dad. I love athletics and was the National Junior Champion for 100 and 200 metres sprinting.  I am a self advocate.  This means that I speak out to help myself and others to have a voice.  I am also a Partners in Policymaking Graduate.  I am one of the leads for self advocacy in Wirral and a Director of Together All Are Able; a Community Interest Company supporting Self Advocates.

I created my first one- page profile myself with help from a friend and colleague, Vicky, in 2012. I wanted people to understand me and what I was saying and I thought having a one-page profile could help me to achieve this. I often felt that people would shout me down when I expressed an opinion and not ask me questions to understand what it was I was trying to say. I wanted a way of explaining to people that they needed to talk to me more before disagreeing with my points.

Helen Sanderson asked to see my first draft one-page profile and she was impressed. She said she could help me improve it so that it achieved more of what I wanted it to achieve.  So in May 2013 Helen and I worked on the sections ‘what is important to me’ and ‘how best to support me’. There had been some confusion between these two points in the first draft and making sure this information is clear is very important as other people can then support you in the way that is right for you.

I use my one-page page profile mainly for work.  I update it myself.  I share it with the people who I am working with and the people who I am to have meetings with. Some of the other people I work with use one-page profiles too and when they do, it always makes our communication with each other so much smoother. I sometimes send my one-page profile by email before I meet someone and I also carry it on my ipad so that I can share it with people in person.

Having a one-page profile has made a big difference to me.  I am listened to more now than I was before.  The Directors that I work with at Together All Are Able tell me if they will be late for a meeting (as this is something that I have stated is important for me to know).  It helps me to feel more in control.  Because it helps me communicate more clearly and helps people to understand me easily I feel that people are more open to working with me now. There are far less situations where I feel upset or misunderstood after speaking my mind and this is a very positive outcome of my one-page profile.

 

 

 

 

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Team work – making it work!

An example of how one-page profiles can be developed for teams as well as individuals and how by using them, people within the team share a sense of common purpose, celebrating what they are good at and recognising what is important to them as a collective.

East Berkshire one-page profile

East Berkshire one-page profile

Written by Dimensions

The East Berkshire region is one of support provider Dimensions’ operational regions, covering the areas of Wokingham & Bracknell. Around 200 people are supported within this region, in a range of different settings, and there are over 350 members of staff.

Although each individual member of staff and person supported has their own one-page profile, as part of Dimensions Personalisation Journey, the regional management team wanted to develop a profile which reflected the team as a whole. This has been shared as part of the roll-out of our personalisation journey.

The profile was developed by one of the Assistant Operations Directors who used ideas and thoughts captured at a regional management meeting, as well as asking others who work with the team internally and externally.

The ’East Berks one-page profile’ has been shared with managers and staff teams throughout the region. People we support, and other internal and external stakeholders have seen the profile. Following on from the regional profile, a number of individual staff teams have created their own team profiles as well.

The regional one-page profile has helped the staff recognise their strengths and achievements, and acknowledge what is important to them on a collective basis. It has given the whole region a sense of their identity and enabled them to share this with others.

Developing the profile has helped the staff team feel connected to what they are trying to achieve, and to recognise what it important to them. It has supported the personalisation journey, as staff can connect up individual profiles to team profiles and to the regional profile, creating a sense of shared purpose and understanding, as well as celebrating things that we feel we are good at.

An alternative to setting targets through SEN Statements

A wonderful example of how one-page profiles can help schoolchildren who experience autism communicate what is important to and for them whilst sharing their personal skills and gifts in a way that works well for them. Connor’s story demonstrates how one-page profiles can be used in person-centred reviews as an alternative to solely setting targets through SEN Statements; putting him at the heart of all decision making.

Connor's school one-page profile

Connor’s school one-page profile

Written by SENCo Debra Ayers from Blaenbaglan Primary School

Connor is eleven years old and has a dual diagnosis of speech, language and communication difficulties and autistic spectrum disorder. He is very caring and loves singing and drama. His personality endears him to adults and he has built some good friendships. He speaks as he finds and has a sense of humour if the joke isn’t on him.

Connor’s one page profile was created in readiness for his transition to Comprehensive school so that the new people in his life could get to know him a little before meeting him and Connor could tell them what he thought was important for them to know about him.

Connor completed ‘what’s important to me?’ independently and ‘good day bad day’ was shared with staff to create ‘how best to support me’. His peers, staff and family contributed to ‘what we like and admire’. He created his profile in school using ‘Pages’ (i-pad) and included a video. The profile was completed over the course of five teaching sessions in a week.

Connor’s profile is on display in school and has been shared with staff in his new school, his family, the LEA and professionals who are currently working with him. It was sent out with his invitation to his first person-centred review. It has been used in preparing for this review through discussion with Connor, his mother, teacher and speech and language therapist, identifying what’s working / not working and possible outcomes to be considered in the review meeting. It’s a working document which he can amend and add to.

He has loved making it and it portrays so much about him, even down his choice of colours and use of video. It has helped staff working with him gain a deeper insight into his views in and out of school. It has certainly helped us realise the importance of not assuming we know everything! Even his mother was surprised at one thing he included in ‘best ways to support me’. It helped us realise how astute Connor is about his likes, strengths and needs. It has helped family and professionals realise how they can support him and use the profile as the link to encouraging him to become increasingly independent by offering something that we know he wants or is important to him and putting in strategies that will enable this to be successful.

Connor loves sharing his profile with others and it has helped him to build relationships with less familiar adults and peers. The profile, as part of the person-centred review process, has, undoubtedly, made Connor central to the decision making process and the outcomes are pertinent to him at this moment in time, rather than having targets set linked to his Statement of SEN and what we as parents and professionals consider to be important for him.

We thought we knew Connor well before producing his one-page profiles but he still surprised us and his mother. It gives an amazing insight that we just hadn’t managed to achieve before! The person-centred review process, has changed the way we will prepare for and conduct review meetings. Connor is now at the heart of the process, being fully involved in the meeting and actively buying into the outcomes because they are important to him.

With great support you can achieve great things

A powerful story about one man’s journey from a secure hospital ward to happily living in his own home, using his one-page profile to direct his support and communicate the things that are most important to him.

Michael's one-page profile

Michael’s one-page profile

Written by Tracie Gudgeon of Care UK

When we met Michael he was living on a secure ward with two people supporting him at all times. The people supporting him wore personal attack alarms and were charged with 15 minute observations. This is worlds apart from where he is now. Twenty-nine year old Michael now lives in his own home which he loves people to visit. Not only will he greet visitors with warmth and affection but he will remember how they take their tea and coffee and any other small detail from the last time they were there.

Back when Michael was living on the secure ward a person-centred transitional plan was arranged to see how life could be better for Michael.  It was vital that the people supporting him understood what Michael’s autism looked like for Michael and that they really understood who he was.

We started spending time with Michael in his hospital and worked with him to develop his Circle of Support. A Circle of support is a group of people that come together with the common purpose of helping the person at the centre of the Circle to achieve their goals. We looked into who the important people in Michael’s life were and this in turn led us to learn more about what matters to him.

We started to work alongside his existing support team to help us get to know Michael and would spend time just sitting with him or joining him on his daily routines to understand his world better. Michael started to express himself more during this process and would share with us his aspirations and dreams. We leant that he would like to learn to swim and ride a bike and he shared this with us through pictures.

Michael’s one-page profile captures the confident, fun and outgoing man that he is. With the right support and vision Michael now has his own space and directs his own support. His one-page profile clearly communicates what is important to him and how best to support him so that those people involved in Michael’s life know just how to support him in a way that makes sense.

Michael will think nothing of walking into a room of strangers and socializing with them now and attends a local club night with his friends every Friday – at long last he feels like one of the lads.  Only just recently we saw Michael confidently presenting his thoughts and views to an audience at a regional working together for change event.  The transformation is inspirational.

Michael has now learnt to ride his bike and has twice weekly swimming lessons which are recorded in his one-page profile. He has a busy social calendar, and is an active advocate at our Care UK Listen to me Group. Michael’s support is directed by his one-page profile and his story is evidence that with great support you can achieve great things.

Seeing the child that I see

A strong example of how this mum’s battle to constantly advocate and inform has transformed since creating her son’s one-page profile. Now she is able to sit back and listen as she has the confidence that the people supporting her son understand him well and see the child that she sees.

MalcolmWritten by Malcolm’s mum

My son Malcolm is almost 10 years old and is a very smart, funny boy who is such a positive, contagiously happy fellow. We had known from his toddlerhood that he had some delays in his development and seemed to be oblivious to much of the activity around him. It was very clear that he was bright and much of what we saw could be fluffed off as being a third child and my mom had said that boys seem to speak later than girls, so we weren’t concerned.

When Malcolm was 6 he was assessed for Aspergers and Autism. His older brother was diagnosed with Aspergers when he was 6 and Malcolm seemed to be progressing socially and speech-wise, much slower than his peers. At that time he was not clearly on the Spectrum. By the time he was 7, the paediatrician labelled him with Attention Deficit Disorder (ADD) and put him on medication. The medication certainly helped but when he was 8, he started to show signs of emotional struggles that seemed greater than the ADD label. After he was assessed by a team at The Children’s Treatment Network in the spring, they had found his characteristics seemed consistent with an Autism diagnosis.

When Malcolm started his grade 4 year at the age of 9, there were so many new staff members to the school, including the principal, that it seemed a good idea for me to create a one-page profile for them to get to know my son and to know how to help him through any social/emotional struggles he may experience during school. The year prior, he had started to hit himself in the face when he was overwhelmed with frustration, I felt that the staff could understand more about what drove this behaviour, how to recognise the triggers and therefore how to support him to avoid it, as well as how to guide classmates in supporting him in a non-judgmental way.

As a part of my role with Community Living, I have been creating one-page profiles for various facets of people’s lives to help others get to know them. I created a profile for my son for him to enjoy his own information, for him to feel that he doesn’t have to tell each staff member, respite contractor or Camp Councillor about his struggles but can simply hand over his profile for them to learn from. I provided the information and observations as well as found photos of pride for him (the faded photo of him getting a bulls eye in archery) and Malcolm proofed it.

Malcolm’s one-page profile has been shared with his Respite Contractors, his homeroom teacher, and all other supports in his life at school. We have also used it for his transition into a new school where he will be attending Extended French.

It has been very helpful to us as parents. It is easy for people to jump to conclusions about the behaviour of our son as it isn’t a common reaction for a child to try and hurt himself. The profile makes staff aware of this possibility arising but it focuses more on what great things my son can do and interests he has, and it helps people quickly want to get to know him so he can feel safe and appreciated without the stress of a poor reaction from others.

I have found that teachers and students are more protective of him and will rally around him when others might make fun of him or respond negatively.

Whether it is because of the one-page profile or because he is surrounded by a great group of people, it isn’t clear why he is now so engaged and cared about. But it is clear that the profile has eased the constant explanations, the reactions of others, and the quick to judge comments. Our energies are now focused on the future and not having to continuously inform and advocate.

I have found that our time is better spent with teachers and support staff just getting updates and funny stories during meetings now. I really enjoy just listening during a conversation rather than informing and so often there is only positive information being passed to us and not the constant worries of the staff who may not understand why Malcolm is acting in a certain way.

I believe that Malcolm’s one-page profile has helped others move past the negatives and the uncertainties and just see the child.

Helping people live the life they choose

An example of how one-page profiles can help a person communicate their working style. Carl’s story also highlights how profiles can be used by a Quality Auditor as a review tool by assessing whether or not a provider is supporting people to achieve the things that they state as important.

Carl's one-page profile

Carl’s one-page profile

Written by Dimensions

Carl Shaw is a Quality Auditor at Dimensions. He carries out audits so that we can measure the quality of services against an agreed set of standards called Reach2; they outline what people should expect from a supported living service so that they can, for example, choose where and who they live with, how they are supported and who supports them.  As well as being an excellent Auditor, Carl has rounded experience in his field as he too has a learning disability.

As a Quality Auditor, Carl’s one- page profile has been used to introduce him to the people living in the services he audits, and the staff teams there.  In developing his one-page profile, Carl asked his family, some friends, colleagues and fellow trainees at a course he attended about person-centred reviews what they admired and liked about him. Carl got lots of feedback and decided to categorise the answers into three parts – work attributes, things that keep him on an even keel and other attributes.

Carl likes to have a good balance of home life and work life. He works 25 hours a week which enables him to feel fulfilled in both areas of his life. His one-page profile reflects this and so the people working with him are aware of this important balance without Carl having to explain it.

Carl’s one-page profile highlights that it is important to him that people we support get enough support to live the life they choose – the Reach2 standards are assessing this. In his one-page profile Carl explains that he might come across as strict in his assessment of our services, but that is because the quality of the service people experience in order to live their life is very important to him.

Carl also asks managers for the one-page profiles of the people they support. He finds this an essential tool for his job because when he visits a service he can look at the things that are important to the person, and then asses if those things have been achieved or are being worked on.

Carl also mentions in his profile that he needs support with writing and English.  He is now doing an English literacy course to help him to be able to type reports better. This is another benefit that has come out of sharing important information by using a one-page profile.

‘Meeting’ someone before you meet them

How a one-page profile can help families feel at ease when meeting Support Providers and talking about their support needs. Marina’s one-page profile gives both personal and professional information. Families get a sense of who she is which helps them to feel comfortable and relaxed when first meeting her.

Marina's one-page profile

Marina’s one-page profile

Written by learning disability and autism support provider, Dimensions

Marina works as a Support Advisor for support provider, Dimensions. She talks to potential new customers and their families about what kind of support is important to them and what is available; this helps them work out what they want and how much it will cost.

Marina’s one-page profile is used to help introduce her to customers and their families. When meeting for the first time the challenge is often to break the ice, get to know one another, and feel at ease. It was hoped that sharing information beforehand about who Marina is and how she approaches her life and work would help.

Marina developed her one-page profile with her work colleagues, family and friends. All Dimensions’ Support Advisors hold an up-to-date profile and they have found that they support and aid internal working relationships and productivity. It was thought that extending them to potential customers and families could have similar results.

The profiles used by Marina and her team have made a big difference in helping working relationships to quickly settle. Families, in particular, have really taken to them and have commented on their benefits. They have said that it is nice to put a face to someone’s name when looking at the photo, which makes them feel like they have ‘met’ Marina before she arrives at their doorstep.  There has been an emotional difference too. People and families take comfort in getting to know Marina through reading about what is important to her and have found this very ‘warming and settling’.

Marina sends out her one-page profile to people and their families before meeting them face-to-face as a way of introducing her and her approach to work.  She updates it from feedback received from people and their families, as well as from discussions with her team members and manager.

In her one-page profile Marina talks about being passionate about her job as well as being committed and not giving up. She also provides some lighter and more personal information that lets people know she cares about her own family and has room for fun in her life too. This information presents a reassuring balance for people and Marina has noticed that it has made her more approachable.

Of her profile, Marina said: “It has helped iron-out the uncertainties and unease that sometimes comes with meeting people for the first time, particularly (and understandably) when people are seeking out any hints or clues that will help them build trust and confidence in the relationship. It helps clarify the best way forward and ensures I can get on with my job with confidence.”

A view of the world from a different perspective

Philip's one-page profile

Philip’s one-page profile

An excellent example of how one-page profiles can empower people to achieve their goals. Philip is Autistic and has his own unique perspective on life. With the help of his one-page profile he has been able to do things that had previously worried him and is one step closer to fulfilling his life ambition; being famous!

Written by Suzanne

Philip is 26 years old. He is very witty, chatty and his biggest goal in life is to be famous! Philip is very likeable and he has an army of supporters and admirers. He makes a lasting impression on everyone he meets.

Part of his fantastic character is the fact Philip has Autistic Spectrum Disorder. His view of the world is very different to a lot of people. Philip has helped us appreciate the diversity of looking at and interpreting the world. There is no correct way to perceive our environment however, there are many ways to see the same thing and each of them may be correct if seen from the right perspective. This is what Philip does; he gives us his perspective of how he sees life.

In 2012 one of Philips greatest personal achievements was going to the Supermarket. This took a lot of planning with Philip who initiated the trip by saying that he wanted to go shopping and that if we got him a wheelchair he would go. The wheelchair makes him feel safe even though he has no physical disabilities; Philip is terrified of strangers, people and community life.

We researched several Supermarkets and approached them with Philip’s consent explaining the situation, discussing different types of wheelchairs they provide and the best times to access them. Sainsbury’s at Bishop Aukland were very helpful. We took Philip and checked out different wheelchair options. We also gave Sainsbury’s Philips one-page profile with his consent. His profile has all the important information about Philip, what is important to him, what people like and admire about him and how best to support him. This helped people at Sainsbury’s get a picture of Philip before meeting him so they had a good understanding of who he is. They all read and appreciated the information and I believe it helped them gain a deeper understanding before meeting Philip in person which undoubtedly improved his experience.

Philip goes shopping now every Tuesday. He has had his picture in the Northern Echo and a story about this achievement. He is more comfortable around people and has built a circle of friends from staff who work there. We also used the one-page profile when Philip wanted to go Horse riding. It is a good “ice Breaker” and Philip loves the fact that people know him before he has met them and it makes him less anxious. He is trying new things now and feels more confident that “the world is ready for Him”

Before producing his one-page profile, Philip only went to the moors or places where there are very few people. I can safely say that it has changed his life and he is more involved and having more new experiences than ever before.

Championing change

Written by mum, Kate

Kate

Kate

I have three children. My youngest boy is 6, a middle girl who is 10 and my eldest Alfie who is 13. All my children have one-page profiles and all for different reasons but it was because of Alfie, who has Down’s Syndrome and is on the Autistic Spectrum that I first heard about them and their powerful ability to communicate, advocate, and direct support.

I live with my family in rural east Suffolk by the coast. It is beautifully scenic and there are some wonderful things about our community that I wouldn’t change a bit.  However, and I don’t feel too bad in saying this, we are not exactly cutting edge in the learning disability and autism support world.  I go elsewhere in the country and person-centred practices have been high on the agenda for some time. Where I am, people still frown and squint slightly the first time they hear the term. Not to say that they are not open to it or indeed all-embracing of the opportunities that come from person-centred tools, they just don’t know about it. I’m hoping that I can help change this and therefore change the community that Alfie will live in so that he has a happy and fulfilled life and a future that we can all look forward to.

Up until Alfie was 9 years old he attended a mainstream School. It had felt important that Alfie was given the same opportunities as everyone else and at the time we thought that sending him to the same place as everyone else would ensure this. It didn’t. The school were not equipped to support Alfie well. Out of the 5 teachers he had during his time there only 2 tailored their lessons for Alfie’s Support Assistant to teach him one-to-one. Because of their lack of understanding of who Alfie was and what he needed, rather than being included, we found that he was being excluded and gradually becoming more and more isolated from his peers. It reached a point where he wasn’t allowed to touch or play with anyone –  Hardly the best thing for a young boy’s confidence and social skills.

We felt that our only other option was a special school for children with moderate learning disabilities. We knew at least here that Alfie would be with people who understood about his specific needs and would encourage and teach the social aspect of school as well as support him in his learning. In many ways this new environment has been better for Alfie.  Now that he is older, his lessons are just 45 minutes long and then he gets to walk to the next class – this type of structure, scheduling and activity is very good for him. Sadly though, despite this being a school designed for children with different support needs I still feel they are lacking in their approach and certainly not at the point where they could be described as personalising the support or the education they offer their pupils.

Alfie is fluent in Makaton but chooses not to use it. He communicates mainly through behaviour and for the school ‘behaviour’ seems to equal ‘bad behaviour’. I regularly get notes about ‘incidents’ that Alfie is involved in – usually relating to him being over familiar with another pupil, hugging them too tightly, or holding on to their earlobes (he gets a great deal of comfort from earlobes). I never hear about the why? What led up to the behaviour? How he was in himself immediately before or after? What can be understood about what he might need from how he has acted?  I just hear about the what. To me this shows a real lack of understanding about Alfie, who he is, what is important to him and what good support looks like (all the things that are recorded on a one-page profile).

I’ve recently started to co-facilitate the ‘Better Life Programme’ – an 8 session  training course for families to introduce them to person-centred thinking tools, what personalisation actually means and how to access things like personal budgets and support from Local Authorities. It is a course that I myself attended and it changed my world. Alfie’s school has given us permission to use their building to deliver this to parents. It is my hope that the learning will spill out into the corridors and become absorbed by the foundations of the school (or maybe that the head teacher will sit in on a session and take something away from it) and this will lead to change.

When Alfie was younger I thought we had to fit him into the world that already exists. I now know that it is the world, our communities, schools, places or work, people’s perceptions that need to change to fit in with him and all the rest of our children. I give Alfie’s one-page profile to people because I know that if they read it they will understand him better, be able to make  a few small adjustments and this will automatically improve their experience and time with him. Alfie’s school were very positive about his profile when I first introduced it and I strongly believe that if they learnt more about this approach and adopted it for more of their pupils it would change the way they support and teach because they would see and understand each child for the unique individual that they are.

One-page profiles in end of life support

How person-centred thinking tools like one-page profiles can help people get the right support at the end of their life whilst helping family, friends and professionals through the journey.

Stephen's one-page profile

Stephen’s one-page profile

Written by Tracy Meyerhoff

Sixty-two year old Stephen lived in Karelia Court, a home run by Hull City Council which specialises in supporting people with autism. Stephen’s autism affected his communication and interaction with people but despite this he was able to express his wishes clearly and choose his own support using person-centred thinking tools, something that Hull City Council has been introducing across their adult social services.

Staff at Karelia Court were committed to supporting Stephen in the way he wished, and so used a one-page profile to help record what was important to him and how best to support him. To assist the team in this staff received a training programme and introduced a series of support structures that helped change the culture of Karelia Court, putting person-centred thinking at the forefront of their support. This was reflected in the way staff and residents interacted with each other as well as in paperwork and care planning.

For Stephen, it meant that he was able to live life the way he chose whilst receiving the support he needed. This approach became all the more important when in 2011 Stephen was diagnosed with advanced oesophageal cancer. As a man with autism, routine and familiarity were very important to him, and his diagnosis meant that he was going to experience a number of changes and come into contact with lots more professionals involved in his care.

Following discussions between family, carers, clinicians, and Stephen, palliative care was felt to be the most appropriate treatment. For staff at Karelia Court, this meant ensuring that their values of providing person-centred care continued and that the new people that would become involved in Stephen’s support used his one-page profile to understand him and how best to support him.

Stephen remained at Karelia Court and received some in-patient care at Dove House Hospice.  This reduced the chances of Stephen having to make unnecessary hospital admissions, which would have caused him additional distress. It also meant that staff were able to work together, Karelia Court sharing their knowledge of autism and Dove House Hospice, end of life care. Most importantly though, it meant that Stephen’s person-centred support continued and one of his dreams was realised when he met Hull City Football Club players after staff at the Hospice read that he was an avid supporter in his ‘If I could, I would’ statement; one of the person-centred thinking tools used at Karelia Court.

Sadly Stephen’s condition worsened and he passed away in January 2012 but the person-centred support he received from teams at Karelia Court and Dove House Hospice never faltered. The visits from friends and family that he had expressed as being so important to him meant that he passed peacefully with his loved ones by his side.

Since Stephen’s death, all the organisations involved have come together to reflect on what happened and to ensure that care for other supported people at the end of their life is always of a high quality. By keeping Stephen at the heart of all planning, sharing information and constantly talking to Stephen about what he wanted and needed, he was able to make decisions about his care right the way through, even planning where he wanted to be at the end of his life. It meant that his brother and sister were able to spend time with him without worrying about the practical elements of his care, that medical staff and support workers were confident that they were acting in his best interests, and that Stephen himself was comfortable throughout. Reflecting on the support Stephen received and how he was at the end of his life, his brother said; “If my death is half as good as Stephen’s was, then I would be happy.”

Talking about the benefits that person-centred care had on Stephen and how tools like one-page profiles could help others, Tracy Meyerhoff, Assistant Head of Adult Services (Hull City Council) said; “We realised through working with Stephen that it was the simple things that mattered to him, and for him good care meant providing seamless support and knowing him well.

“We have new ways of working, and we recognise person-centred thinking tools for the positive impact they can have. They help to ensure that the person is not lost in a chaotic and confusing time, and that they continue to influence decisions throughout their medical journey.”

There is an end of life personalisation checklist and guidance book available for free download as part of the Progress for Provider series.