An important part of the community

An example of how a one-page profile has helped one man’s team of support workers understand what is important to him and how best to support him in a social care setting.

Barry's one-page profile

Barry’s one-page profile

Written by Sam Potter

Barry came to live with us on 16 April 2012 from the St Helens Stewart assessment unit. He had been admitted to hospital under section two of the mental health act, from another nursing home after his behaviour became aggressive and they felt unable to support him. Barry had been known on a number of occasions to attack other people he was living with and this was an area of concern for the staff team there.  When first coming here, Barry was unsettled and would often have outburst. We knew that Barry had a history of hiding medication or refusing to take it, which led to a fluctuation is his mental state.

When Barry arrived at Woodlands, staff set about getting to know him, his likes, dislikes and his social history. We worked closely with his wife to do this. Staff worked towards building a detailed picture of how Barry communicates his likes and dislikes and his escalation signs so we were able to notice his mood changes early and help him stay calm.  All of this information was recorded on Barry’s one-page profile. When Barry appeared aggressive the team used soft de-escalation techniques and nursed him in quiet areas to help him feel safe.  We worked closely with Dr Koumuravelli (Psychiatric Consultant) and Janet Parry (Community Psychiatric Nurse) to get his medication balance correct.

Initially Barry continued to behave as he had done before, often refusing to engage with support staff. However as staff got to know Barry and how best to work with him to reduce his anxiety we have seen a marked improvement – this was continually recorded on his one-page profile. It was noted by nursing staff that when Barry seemed most unsettled it appeared to be linked in with a reoccurring urine infection so we began to regularly test for this.

Barry now engages with support staff and with the correct approach and prompt will shower, shave, meet his care needs and even take part in activities. The one-page profile means that all staff learn how best to support Barry quickly and importantly that they see him as an individual with his own qualities, likes and dislikes.

Barry’s overall happiness and general demeanour is greatly improved. Barry is an important part of the community here at woodlands and we continue to work with him and his family to try and improve his quality of life.

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.

Getting back on your feet

An example of how this 85 year-old used a one-page profile to help direct all the new support she was receiving in her life following a fall and a short hospital stay. Mary lives at home and had lost her confidence after her accident. Her one-page profile has helped her get back on her feet.

Written by Gill Bailey

Mary's one-page profile

Mary’s one-page profile

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.

Carrying Sandra’s voice above the noise

A powerful example of how a person living with a mental health condition can be empowered by using a one-page profile to ensure her voice is heard.

Sandra's one-page profile

Sandra’s one-page profile

Written by: Marianne Selby-Boothroyd

Forty-seven year old Sandra likes going to church, listening to instrumental Jazz music, going to college, meeting new people and spending time with her cat, Molly. She doesn’t like it when she has flashbacks, feels paranoid or when the voices in her head take over and she can’t hear her own.

Born in Lancashire, Sandra moved with her mother, brothers and sister to the Caribbean when she was three. At 13 she returned to the UK and it was whilst living in London and attending secondary school that Sandra began to feel really isolated. As a child she was described as quiet, caring and overly sensitive. She was bullied at school where she felt she was not as clever as the other children. Leaving education at just 16 to escape the bullying, Sandra went to see her GP about her problems for the first time. But instead of getting the support and understanding that she craved, Sandra was prescribed sleeping tablets for anxiety and depression.

Sandra first tried to kill herself at just 20 years old by taking an overdose of sleeping tablets, thinking “If I just go to sleep and never wake, it will all be over”. This began a cycle which lasted throughout her twenties and thirties. Sandra’s life was mapped by frequent suicide attempts and admissions to hospital mainly under section. She experienced periods of mania followed by extreme lows and would also hear voices.

In recent years Sandra was introduced to person-centred thinking tools and was supported to produce a one-page profile. The aim was to regain control over her life, find new ways to manage her mental health (other than medication) and start looking to the future again. Sandra wants to get back into paid employment. She wants to travel. Move to a bigger house. Look into fostering. Spend more time doing the things she enjoys such as writing poetry. Much like anyone else, Sandra’s hopes for the future are all about leading a happy and fulfilled life – something that she now knows is possible by clearly communicating to people how best to support her in the here and now.

Of the profile Sandra said: “It has had a big impact on my life. It is so important to me to help others through my own experience but I find it really hard to speak in public or be in large groups. Doing my profile helped me understand the kind of support I need to prepare to be with others, being able to share this information with others has meant I have gone from strength to strength – last week I spoke at a conference full of medical professionals – I got a standing ovation!”

In 2000, there was a turning point in Sandra’s life. She was allocated a black social worker. For the first time she felt listened to – particularly in relation to her cultural needs. It was her social worker who found Fanon Resource Centre and who stuck with her for the eight months that it took Sandra to build up the courage to go there.

Sandra credits her social worker and Fanon Resource Centre for not judging her on her past, instead focusing on the present and the future. Through Fanon, Sandra started to get involved in groups and even completed college courses. For the last year she has acted as an Ambassador for Southside Partnership – which has involved speaking at public events and supporting others to identify the support they need in their recovery.

Struggling with a mental health condition is incredibly hard. The one-page profile has helped Sandra to communicate who she is, what she likes, what she doesn’t like, and how best to support her. She shares it with the important people in her life, her friends, family, doctors, mental health professionals and new people that need to understand her. With this support in place, Sandra has lots of good days and fewer bad days where she feels down and is hearing voices. She is doing a lot with her life including a three year college course learning British Sign Language with the plan of becoming an interpreter.

Sandra is now at a stage where she feels she is in recovery. She is moving ever closer to fulfilling her dreams. She still hears voices. But having her own voice carried through a one-page profile means that it can never be lost in the noise.

Really ‘living’ with a long term health condition

Written by Jane Bayley

Jane Bayley's one-page profile

Jane Bayley’s one-page profile

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.