By regaining your identity, you release your child to build theirs

Guest Blog by Rachel Mason, Parent carer

Rachel Mason

Rachel Mason

Once upon a time, I had a live-in job at a Prep school as a boarding matron at the time. Looking after all those little ones, would get me dreaming of the day when I’d have my own.

On my nights off, my now hubby and I would  sit in the pub and picture picnics at the coast and football in the park.  We just knew we’d make brilliant parents

This was probably the last time I allowed myself to dream for many years to come.

We began our journey as an SEN family in 1989 when my eldest son Greg was diagnosed with Autism and learning disabilities at 27 months old and Shaun with Autism 2 years later. As time went on our dreams disappeared and  my life seemed to be shrinking in ever decreasing circles until I was living day to day in a reactionary survival mode. There were plenty of specialist services around our sons, delivering to their own assessed needs.

Year in, Year out we would read reports of their progress towards the ‘social norm’ but for our family it was always Groundhog Day.

We were passive passengers on this new journey that services had set our family on.

We had lost any control of our lives and  the will to dare dream of a different future than the one chosen for us.

In 2004, Norah Fry research centre and Helen Sanderson Associates (HSA) were doing a joint project piloting a 6 week  intro to person centred planning and were looking for families to participate. I joined a small group of 8 parents who were gathered gingerly in the back room of a local pub. We knew of each other in passing at parents’ evenings or school fetes but each you could see was on their own island. An isolation that had been caused by the process of service pathways, separating us from our mainstream peers, each other and our community.

When we were asked to introduce ourselves we were “Greg’s Mum, Sarah’s Mother..” we could talk for hours about them..

.. but  all of us were like rabbits in headlights when asked to talk about ourselves!

Think about it for a moment.. We had all spent year after year reliving our child’s experiences and  repeating our child’s life history for services. There wasn’t anything we didn’t know about our child. We had invested so much that it was as though we had taken on their identity!

This role left no time to be a wife, a daughter , a friend. There was no room in our preoccupied short term memory to store our own memories that we had had a life and aspirations for ourselves and our family before this.

We were taken on a personal journey that for some was quite emotional but most importantly for all, liberating.

As we talked over the weeks we realised  the way in which systems of support within services were set up, had gradually deskilled us and the ownership of  ‘any future’ we might get, now belonged to services

The aim of the course was to introduce us to some person centred planning tools and how we could use them to gain back some of that control and determine our own future  outcomes for our  family

In order to do this for our children, the facilitator wanted us to look at ourselves first. Enable us to see ourselves as individuals.  We were asked to write our own one-page profile. Believe me when I tell you – it was like pulling teeth!

It was as though we had all ‘archived’ that part of us in order not to get distracted from our advocacy role by our own hopes and dreams and also, if I’m honest, to protect ourselves from continuous disappointment when our personal goals  were constantly sacrificed.

We were all so exhausted by the system  that we had forgotten the many skills and assets we had and it was very rewarding to recall and record them.

We all left this project changed people.

For some it was an awakening to a lost identity inside themselves but most importantly it helped us all to separate ourselves from our child, enabling us to step back and allowing them to build their own.

Having a one-page profile for myself helped me to find a healthier caring/ life balance. It gave me back perspective, this in turn gave me renewed strength and purpose to work towards my own goals as well as those of my sons

Up until now I had not even thought there was a future for my son. Now I realised that not having a plan for him and constantly reliving his past whilst working with services, meant he was unable to move on as I (his identity) was risk averse and stuck in the past.

Whereas before I could not see the wood for the trees, with clear positive statements within our one-page profiles, I would see solutions instead of problems. I now saw services around my son as ‘tools and resources’ to achieve his aspirations. The one-page profile was the guide that his supporters could use along with his 247grid which I used to map his progress and where he still needed extra support. At last we felt more in control as a family.

My son’s one-page profile also supported me to have a better conversation with schools who began to see me as a partner.  We were at last  ‘Singing from the same hymn sheet’ (page 37)

I truly believe being introduced to one-page profiles changed my life and the continuing life journey we took as a family to achieve what we have to day.

Using profiles professionally with colleagues and families

An example of how one-page profiles can assist people professionally. Chris talks about how his profile has improved communication and understanding with colleagues, managers and the families he works with.

Chris' one-page profile

Chris’ one-page profile

Written by Chris

I am a Facilitator with MacIntyre’s Family Footings programme.  I support families to learn new ways to make their voices heard and exercise greater choice and control over the care and support they receive. I use my one-page profile as a way of introducing myself to new people.

I originally created my one-page profile when I was applying for my job. I was asked to bring one along with me to interview. By writing it, I felt like I could give my interviewers an idea of who I really am – not just the qualities I have that I would normally talk about on an application form, but information about my other interests and a bit about challenges in my life too. I wrote the text for the profile myself and showed it to my wife and my parents afterwards, asking for their feedback. Since then I have made a lot of little changes to my profile to keep it relevant. For instance, I have amended the bit about my running as my weekly training mileage has increased. I added the bit about supporting individual families when brokerage started to become a bigger part of my role at work.

I use my one-page profile a lot at work. I often bring copies with me to workshops I lead for parents and professionals in order to introduce the tool to them in a way that will support them to use it reflectively before immediately applying it to children they support. I give copies of it to families that I work with on an individual basis to help them see a less formal side of me straight away. I have also written another, less personal version of my profile that I can use to introduce myself in circumstances where I need to showcase my professional skills and attributes, as I realise that my personal one-page profile isn’t appropriate for every situation.

Parents and carers with whom I share my one-page profile frequently tell me how refreshing it is to have a more holistic look at who someone coming to their house to support them actually is. It’s a good way for me to introduce the tool to them too because reading my profile often causes them to get excited about the potential benefits it could have for members of their own family. When I have had chance meetings with people who have attended my workshops in the past and have seen my one-page profile, I am often surprised when they ask about my running or songwriting. Because we have shared things with each other about what is important to us, we have a better starting place for forming relationships that are based on mutual respect and understanding.

My one-page profile has also allowed me to have better relationships with my colleagues and manager. Because we all created and shared our profiles when we started in post, we all started our work with an appreciation of each other’s strengths and information about how best to work together. For instance, my co-workers know from my one-page profile that I prefer to receive information electronically, and I know that some of them prefer to receive information on paper or in conversation. We have also taken time during team meetings to revisit the ‘Like and Admire’ sections of our profiles and add things to each other’s. This has helped build our working relationships with each other and has helped me to gain extra confidence in certain areas of my practice because of how my colleagues see me.

Helping Kenny reconnect with his past

A powerful example of how one-page profiles can help people living with dementia share what is important to them and how best to support them. Kenny wasn’t using speech to communicate anymore and his mobility had suffered after a fall. His family and support team needed to share what they knew about Kenny and his history with each other to help him communicate better and have more choice and control.

Written by Gill Bailey

Kenny picThe company of his wife and mother, chocolate, magazines, newspapers, tea with two sugars and long bubble baths; these are the things that are important to Kenny. The people who support Kenny know this straight away even if it’s the first time they have met him. How? Because it is written on his one-page profile.

Kenny is 64-years-old and is one of the warmest people you could wish to meet. He has lived in a home which supports people with dementia for five years.

As a young man, Kenny was a professional football player. Aged 25, he went into the textile trade as a salesman until retiring due to early onset dementia at 54–years-old. Kenny loved sport and played every sport going.  His mum Ethel said: “if sport had been his exams, he would have been top of the tree in them all!”

He loved golfing holidays with his mates and he also spent many happy weekends away with his wife Jean in their caravan, which was his pride and joy. Kenny and Jean didn’t have any children but, as Jean said;”we were always content to just have each other and our group of friends.”

Kenny was a very confident man who could go and chat with a roomful of strangers easily. He enjoyed socialising with friends, and a drink in his local most days on his way home from work.

As Kenny’s illness progressed it became clear to those close to Kenny that he was bored and restless.  Kenny no longer used any words to speak and was unable to move around unless supported by two staff members or in a wheelchair due to a fall which led to a broken hip a year previously. A person-centred review meeting was arranged with Kenny, his wife Jean, his mum Ethel. I was the facilitator and we brought in the support staff who knew him best, including Adrian the nurse who had specialised in dementia care.  Prior to the review, they carried out a functional assessment to establish a broad brush view of the stage of dementia Kenny was at, which at best could be helpful in creating activity which would increase Kenny’s well-being and ensure he had the things that mattered to him present in his life.  At least it would give those close to him ideas to try in order to learn what worked well for Kenny.

At Kenny’s review meeting, everyone gathered their collective learning about what was important to him, what best support looked like from his perspective, any questions to answer or issues to resolve; and what was Working and Not Working from the perspective of Kenny, his family and the staff team. This was a process which helped everyone think about Kenny’ life with him.  Its purpose was to inform action that made life better for Kenny and his allies. Those who knew Kenny well recognised what he was saying with his behaviours and so they began to record that rich information onto communication charts. This would be added to by everyone who spent time with Kenny as they learnt new information. They also explored how they could provide opportunities for Kenny to try new things to help them learn more about what would make life better for him.

The most significant outcome from the meeting was the development of Kenny’s one-page profile which would prove invaluable to staff as they used it as their job description (how best to support Kenny) on a day to day basis. It meant that even new staff could get to know Kenny quickly and support him in ways that made sense to him. Having the things that were important to Kenny written down on one sheet of paper made a massive difference. Knowing the important people in his life, how he takes his tea, what treats he likes, what calms him down and what works him up enabled the team to support Kenny well.

As well as capturing this vital information, the great in-depth conversations that occurred between Kenny’s family and support workers when creating the one-page profile meant that they were able to share history and personal knowledge that could be used by each other to help Kenny feel more in touch with his past and reconnect with familiar times.

Life is much more interesting for Kenny these days – evidenced by the spark in his eyes and frequent smile on his face – a rarity before staff explored these approaches with him. His support worker Jane described it as a “transformation…’’ and it isn’t just Kenny’s life that changed so positively. The people who care about Kenny now have the confidence that people understand him well and appreciate him for his personal talents and gifts.

You can use conversation cards to ask good questions that draw out rich information, when supporting someone with dementia and their family to create a one-page profile.

Getting others to sit up and listen

A great example of how this woman’s one-page profile has made people sit up and listen when she says what she needs.  Doreen experiences dementia and often felt threatened and confused by her interactions with support staff. They now understand her well and know how to support her in a way that makes sense to her.

Written by Gill Bailey

Doreen PicIf you do not know that you have dementia, and once the disease advances you may not be aware, what would it feel like to be approached by someone offering support? Imagine you are sitting in an armchair and a person you don’t know or recognise comes up to you and tries to stand you up to walk you to the dinner table to eat. I can only imagine how it must feel to someone with Dementia but understanding this is the first step to approaching support differently.

Doreen doesn’t know that she has dementia.  She is 79 years old and lives in a residential service supporting 44 people who also live with dementia. She is described as someone who ‘restores your faith in human nature’’.  Doreen is a gentle lady who was always at the heart of her church community until her dementia progressed.

Over the last eighteen months we have been introducing one-page profiles to people living and working with dementia. The team worked with Doreen and her husband Clifford to develop a one-page profile. They learned to pay attention when Doreen told them she was becoming frustrated and wanted her own space. From the details written on her profile they understood that this meant that she needed to be supported to find a quiet corner or to go to her room. Understanding what ‘best support’ looks like from Doreen’s perspective has made a huge difference to her happiness and wellbeing .

Obviously there was information held in Doreen’s care plan but you get a very different understanding of who Doreen is from her one-page profile. The organisation has put a lot of effort into their care plans and they do contain some good person-centred information but crucial information about Doreen was  scattered across 60 pages of mainly clinical notes and assessments plus a page of  ‘likes and dislikes’.

From Doreen’s one page profile we learn that she enjoys talking to Winifred and Kathleen and that she gets upset if she is ignored; knowing this helps staff to encourage and support these relationships.  We learn that Doreen likes to get up in her own time, between 8am and 10am in the morning. She used to be rushed in the mornings but now that this information has been shared she is left to rise at her leisure.  As well as a personal change for Doreen, this is a shift in culture from a once largely task focused organisational culture to one that is based on relationships and deep understandings of individuals. This is one of the great advances that has come out of introducing one –page profiles where Doreen lives.

Doreen now has greater choice and control in her day-to-day life. The staff that support her know how to do it well and anyone new to Doreen can quickly learn the important information about her from one single sheet of paper. For Doreen it means she isn’t as confused or frightened about where she is and what is happening to her – instead she dictates her own routine and stays connected to her life before dementia by doing the things that she always has, like baking, reading the newspaper and seeing her grandchildren.

Doreen’s story features in a newly published book by Helen Sanderson and Gill Bailey called Personalisation and Dementia available to order from HSAPress.