1. Jane’s Story

When I was first diagnosed with ulcerative colitis nine years

ago I had no idea of the impact it was going to have on my

life. I thought “Ok, now it has a name…give me the

medication that’ll clear it up and I’ll be on my way!” But I soon

realised it wasn’t going to be that easy. I’ve spent the last

nine years having regular colonoscopies, stays in hospital,

constant medication changes and every enema going.

Back then, I presumed that you got poorly, got a diagnosis,

and then got on with it. I honestly thought that if I struggled

on each day, did what the consultant, G.P’s, and specialist

nurses told me then I could deal with what was happening to

my body. But at 37, single and without any of the confidence I

once had, I found that I had lost myself somewhere along the

journey. I used to be outspoken and now I found myself

letting doctors do the talking for me.

My person-centred journey started when I received a phone

call from my GP who thought it was time that I considered

surgery. This had always been the last option in my mind and

not something I was ready for but I felt so powerless when it

was suggested. I couldn’t find my voice to say how I felt.

Something had to change. It was then that a colleague at

work introduced me to person-centred thinking tools on the

‘thinkaboutyourlife’ website and I started to realise that I could

take back some control.

The website was full of tools that I could use to help me deal

with living with a long term health condition. As I started

using the tools and writing about how I felt, I realised that

there were so many things that really upset me about how

people treat me and my condition, and the presumptions that

people make on my behalf. It was such a good feeling (and

emotional at times) documenting how I’d like to be supported

and what didn’t work for me. The one-page profile was

particularly therapeutic as the process made me analyse what

a good day looks like and what a bad day looks like and how

loved ones could best support me. Just being able to put

some of these thoughts into words had a huge impact.

My one-page profile is blue. Anyone who knows me

understands how important that colour is to me, and I even

like my photo. It was taken on a ‘very good day’. I sent

copies to the closest people in my life, parents, brothers,

sister-in-law, best friend and ex-husband. I had no idea what

they would make of it, as all this was new to them too. I was

amazed and happy that each person took the time to sit with

me and talk about what they’d read. Everyone said they were

surprised how much impact colitis had on my life day-to-day,

and I had a few telling’s off for struggling on for so long on

my own.

I was able to show my boss and have a very honest discussion

about what my needs in the workplace are. I showed my best

friend and got her to understand that even when she had my

best interests at heart, it didn’t feel good when she

questioned my diet or how I was managing my condition. My

family read it eagerly and absorbed it well. I felt like they

really listened to me after that. Even my 73 year old mum

read it and took a short holiday from her ‘mother knows best’

stance before returning with full vigor – I have come to accept

that you can’t win them all!

I recently completed a course of intensive acupuncture

recommended by my Colitis Nurse, Rachel. I’d finally found

my voice and given a very firm and very loud ‘No’ to surgery.

I wasn’t ready to live with a bag and I was no longer afraid to

say it. Rachel said she would work with me to try all the

alternatives. I started the most restrictive diet known to man,

cut my working hours and stopped pretty much all my

socialising for a fortnight. It was drastic, and I’m sure if you

are reading this it doesn’t sound like much fun, but during

those two weeks I went back into full remission and have

remained in remission since.

Developing my one-page profile has dramatically improved

how I cope with colitis each day. Just being able to

communicate to people who are close to me how I feel and

the support I need has made me look more positively about

the future. I still get bad days, but I no longer feel like I have

no control. My wish is for every person that lives with a long

term health condition to use the website, explore and use the

tools, and build their own one-page profiles enabling them to

regain control of their lives. I wish I’d known about person-

centred thinking tools when I was first diagnosed. It has

changed my life.

2. Ellens story

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.

3.Mary’s story

Mary is 85 years old, she lives in Preston in a house she owns

and she has lived there for around 50 years. She has raised

her children there and has fond memories connected to her

home and would not like to move anywhere else. Mary’s

husband George sadly passed away seven years ago. Since

then Mary has been living on her own. Mary has always been

independent and says she has been brought up not to expect

any help from anyone and to “get on with it”.

Mary has devoted her life to raising her two children:

daughter Diane and son John who both have their own

families now. They live in Preston and visit Mary on a regular

basis. Mary cherishes her time with her children and

grandchildren and is delighted when they come to visit. They

also often take her for a meal out.

Following a fall caused by an uneven pathway whilst out

shopping, Mary was taken to hospital in an ambulance she

was thoroughly checked over. Although nothing was fractured

she was badly bruised and had lost her confidence in going

out, as she was scared of falling again. It was clear Mary

would need ongoing support from domiciliary care services

and so Alex (a reablement team member responsible for

supporting Mary back to living life as she chose) met with her

and her family to develop a one-page profile.

The aim was to use the one-page profile with the various

people and teams that would be involved in Mary’s ongoing

care. It would provide a concise account of what Mary truly

wanted and how they could support her best. A lot of rich

information came out of the conversations with Mary and her

family and this was used to inform her profile, which Mary

ultimately wrote herself. We learned that Mary goes to bingo

weekly on Mondays and to a lunching club at the local

community centre on Thursdays which she thoroughly enjoyed

and clearly wanted to continue.

We also uncovered that Mary doesn’t always remember to

take her medication and she keeps it on the kitchen table so

she remembers to take her tablets after breakfast. It was really

important to Mary that she managed her own medication and

she didn’t wish for staff to support her with this although she

was happy for supporters to ask how she is getting in with her

system.

Since the fall Mary uses a walking stick and feels safer and

steadier with it than without. Mary is now confident enough to

keep to her bingo and lunching club commitments, and

considers herself to be “back to normal”.

Mary says that her profile really helps people get to know her

quickly and means she isn’t having to tell staff over and over

what she needs because the one-page profile does this for

her. It means that staff can ensure she has what matters

present on a day to day basis and that she is consistently

supported regardless of the number of different people

involved in providing that support.

4. Chips story

My dad, always known as ‘Chip’ was 65 when he suffered an

acute stroke. It was in April 2012 and he experienced a

massive bleed on the right side of his brain. He was admitted

to the Derby Royal Hospital. It was one of the most fearful

days of my whole life. I knew then that things were going to

change forever. What I didn’t know, was that we were about

to embark on a person-centred journey and that I was no

longer just going to be his daughter, I was going to need to

be his advocate too.

Dad lost his voice, his normal bodily functions and his pride

that day. The first 24 hours were the hardest. Dad could only

nod or shake his head and it was down to me to interpret this

and advise the nursing team on his behalf. It was heart

breaking and frustrating but I had a coping mechanism. I

knew about person-centred thinking and used my

understanding of him and the tools I’d learnt to advise the

nursing team how best to support him. This was particularly

important because I couldn’t be there all the time and it was

essential that they were still acting on his wishes without me

there to advocate them.

Every day in hospital highlighted another challenge for us. I

sat with dad talking through his communication and decision

making approaches identifying with him what he understood

and what he wanted to share. He was able to nod or shake

his head enabling me to capture his thoughts into his one-

page profile. Once it was completed I shared this with the

immediate nursing team. Every day I reviewed the one-page

profile with Dad and my Sister to ensure we added new

information gathered from his rehabilitation handovers.

I placed Dad’s profile laminated by the side of his bed as well

as giving it to sit alongside his care plan. Nursing staff began

asking me about our approaches and quickly recognised what

was important to dad. Importantly they recognised when he

chose not to engage with them as this remained in his

control.

Helping dad to remain in control of his situation was my

priority. His profile enabled this to happen. Chips connection

to his family and the nursing team was so important in the

seven weeks he was on the ward. Relationships were

developed as the nursing team read and understood more

about him from his profile. They learnt to engage with him

using the information to promote conversations, laugh, joke,

make him smile when he was having a bad day.

Despite his stroke dad was making choices and had capacity.

Staff understood what made him more settled and more

importantly they understood how he wanted to be supported.

The one-page profile quickly progressed and became more

detailed ensuring the right decisions were made when

agreeing his continuing health care funding for his future

nursing care.

Dad was going into a home in the centre of Derby. It was

near to his friends and the places he grew up. I felt satisfied

that dad would be happy there and made sure I shared

pictures and information about the home with him to help

him prepare. Sharing dad’s one-page profile with the nursing

manager really helped me to engage with the assessment and

referral process. It meant that I could clearly say what his

needs were and ensure that they had the capacity to support

him in the way he wanted to be supported.

Dad’s stroke had been incredibly sad for the whole family but

throughout the journey I have been able to support him and

help him to communicate by using the person-centred

thinking tools. The nursing team briefly knew Chip. To me he

will always be dad.

5. Normans story

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.