Person-Centred Paperwork

Posted by Helen

I think and work better when my desk is tidy and ordered. I sleep better when my bedroom is tidy and clutter free. Does having streamlined, organised, ‘clutter free’ paperwork make a difference to how well we work in delivering personalised services?

Our paperwork shows up the worst excuses of organisations. We are afraid to throw information away incase CQC suddenly require it or a court case suddenly requests it. We keep so much more information about peoples behaviours, risk and health, than we do about what matters to people supported and what we appreciate about them.

I learned this afresh when I was working with a provider organisation who wanted to make their paperwork more person-centred.

Here are two illustrations of why this matters so much. Pauline talks about how as a manager, she was the ‘last man standing’ who could cover a sleep in shift at short notice.

"I had to cover a shift in an emergency last week." Pauline, one of the managers told me, "It took me well over an hour to read the lifestyle file and find the information I needed to know how to support him."  (Watch here)

Any agency staff would have the same problem.

Similarly, Michelle, another manager having to cover a shift in an emergency, talks about the negative impact on the person of not having the right up to date person-centred information to know how to support the person well (watch here). So not having the right person-centred information that tells you what you need to know, or having so much cluttered information that it is impossible to find the information you need quickly – vital.

Sometimes it could mean life or death. Commissioner Kim Haworth is so concerned that staff in residential care don’t have easy, quick access to vital support information, that she is working with safeguarding colleagues and providers to introduce one-page profiles for everyone.

I started to explore this with a provider where each person has two large lever arch files for everyone they support, one containing lifestyle information, and the other personal data (GP name and address etc).

So here is the dilemma - how can we have paperwork that tells you who the person is, and how you need to support them, and still meet all the regulatory requirements?

Together with their managers, we came up with the following headings/categories for the lifestyle paperwork.

Information that informs what staff do on a day to day basis.

• One page profile (a summary of the person)
• What is important to the person
• Important in the future (aspirations)
• How best to support the person
• The person’s history (this is important to have a record of but would not be used on a daily basis

Information that staff record daily/as required

• Learning Logs

Actions and Learning

• What is working and not working from different perspectives
• Actions  - who is doing what by when, and progress on this
• Questions to answer

Reference material

• This information is filed somewhere else, but can be retrieved easily if required.

For many of you this will look very familiar - they are the headings from the person-centred review process. This means that every time there is a person-centred review, it should be easy to add and update the file.

The file begins with a one-page profile, almost as an 'executive summary'. If you only have five minutes to read about the person before supporting them, this is what you need to have.

"But what about our behaviour management assessments and plans?" “Where would they go?" asked Peter.

Everyone that they support has several assessments in the lifestyle lever-arch file. These include OT assessments, behaviour assessments, risk assessments etc. As I understand it from being an OT, the purpose of the assessment is to find out where someone is now, and work out what needs to happen to achieve positive change.

The assessment gives a base-line to demonstrate progress and should inform how staff support people. Therefore, we should take the information that tells staff how to support the person well and put this under the 'How to support the person' section of the file.

For example, we expect 'behaviour plans' to tell us something about how staff need to support the person, and often this information can be put into a communication chart (at this time/when the person does this/we think it means/and we should). The assessment itself can then be filed somewhere else, clearly indexed in the lifestyle file, so that people could find it when they want it.

"Won't that be a lot of work - going through each file, and assessment, and pulling out the relevant information about how to support the person?" asked Judy.

I started buy putting my money where my mouth is and took two of those lever arch files home with me (with the person’s permission).

Armed with a highlighter pen I went through 300 pages of filed information. I used the highlighter pen to identify the person-centred information that went under the headings I mentioned earlier. Then everything was either filed or recycled. The final version was 15 pages of person-centred easy to use information. This took me an hour and a half, and then there was an hour of typing to pull the end result together, (and a bag full of paper to recycle!).

The answer was yes, it does take a while, but it made a powerful difference because we need to compare that to the hour that it takes people to find the relevant information in the file at the moment. Frankly, what they have at the moment makes it less likely, rather than more likely, that staff can support people in a person-centred way.

To put this in to practice in the organisation, we had a day together – a working day not a training day, with all of the managers. Each manager brought the files for two people they supported. I explained the headings, and showed people how I had done it, and then we did it together, file by file. The senior managers were in the room, so that managers could check if they were unsure whether they could throw something away or whether it should be filed.

At the end of the day, there were three boxes full of paper to be recycled, and many managers said they left feeling lighter too. You can watch two of those managers reflect on their day here.

How are you managing the challenge of your paperwork reflecting your values, and complying with regulations as well? Please let us know and share your comments.
 

Person-centred decision making for people who "lack capacity"

Posted by Jaimee

I just read  a thought-provoking blog by Dr Dan Robotham of the Mental Health Foundation. He is leading a project with Bristol University’s Norah Fry Research Centre looking at whether direct payments for people who lack the capacity to consent to them offer real choice and control.

It’s got me thinking. My job is about sharing what is being learnt around self-directed support. As I understand it, this means helping people make choices and decisions about how they want to be supported so they are in control of the services they receive. But what about people who are unable to make decisions for themselves – can they really direct their own support?

In Dr Robotham’s excellent blog for Community Care, he explains how the Mental Capacity Act 2005  provides a framework for helping the most vulnerable people who need care and support (for example, some people with dementia or learning disabilities) to make decisions, and assess whether others may need to make decisions on behalf of that person (‘a suitable person’).  He says “indirect payments” raise questions about “best interests” and whether decisions made are in the best interests of the person needing care or the suitable person.

In our book, Helen and I explore how to make decisions with people that lack capacity in a person-centred way. We write that people’s ability to make decisions is related to the opportunities and choices they have to make those decisions. Needing support to make decisions should not prevent people from having control over their lives.

Take for example Joan, 73 and living in a nursing home because of her dementia.  When Joan was young, she couldn’t afford chocolate, but says that now she can, staff at the care home won’t let her because of her diabetes.  Staff felt they had a duty of care to prevent her eating something that might make her ill. Joan was frustrated by the lack of choice and control. For Joan, chocolate meant a lot to her because while she was growing up with 13 siblings, in a two-up two-down with weekly visits to the pawnbrokers, it was considered an unaffordable luxury. The problem was that the staff didn’t recognise that Joan was perfectly capable of making some decisions for herself.
 

The decision making agreement  is a person-centred thinking tool that reflects how decisions are made. When supporting someone in their decision making, it encourages us to consider:

• Do I fully understand what is important to the person and their communication?
• Am I the best person to support this decision-making?
• Is the information that I have and am giving the person relevant to the decision?
• Am I presenting it in a way the person can understand?
• Am I giving the information in the right place and time?
• Have I given the person the best chance to make the decision themselves?

People supporting Anna – a woman with learning disabilities who lives with two other people - wanted to make sure she had as much choice and control in her life as possible. They identified how Anna makes decisions and recorded it in a chart to share with the team:

How I like my information:

• In small amounts; I can read but can’t take in information very well.
• Spoken to me is best and picture books with examples can help.
• Factual and not emotional.

 How to present choices to me:

• Tell me that I need to make a choice and give me a number options or pretend one hand means one thing and the other hand another; and then I can point to my choice or tell you the number.

How you can help me understand:

• Use a book with pictures in it describing the choice or relate the choice to TV shows I like.
• Help me by giving me facts. Don’t use emotional reasons or other people as reasons as I don’t relate myself to others very well.

When are the best times to ask me to make a decision?

• Early in the day, after my breakfast and tablets
• When I say “I’m cheered up today”
• When I have just shown someone something new I’ve bought
• When I’m out after church and I’m shopping
• Over lunch while out.

When is it not a good time for me to make decisions?

• From 4.00pm onwards as I get very tired
• Before meal times I get very hungry
• When I’m biting my fingers or punching my stomach
• When I’m repeatedly saying “I’m not in a bother”
• Before I’ve had my tablets.

This information then informs the Decision Making Agremeent, which can be recorded in a table that shows:

• Important decisions in my life.
• How I must be involved and who else can help with this decision.
• Who makes the final decision.

For Joan, this meant that in her decision making agreement, it set out that when it comes to eating chocolate, she could make the final decision:
 
“It’s my life. I know the consequences and the district nurse checks my blood sugar every day so she can advise me if it’s a safer time to eat it.”  

It will be interesting to see the results of Dr Robotham’s study, due out in April 2013 and we hope that person-centred approaches like the decision making agreement can make a useful contribution to the very real challenge of offering true choice and control for all   http://www.bristol.ac.uk/norahfry/research/current-projects .

Personalisation in Care Homes – what can be done?

Posted by Helen

Last November we launched a book with Dimensions called ‘Making it Personal for everyone – towards Individual Service Funds’. I handed a copy to the Department of Health’s Director General for Social Care, David Behan, when I saw him at a large conference last year. He asked me to describe what we had done, and then offered me a challenge:

“You have done it with six people living in residential care – come back to me when you have done it with 40 people.”

I took that challenge very seriously, and in partnership with Stockport Council and Borough Care, we are working to see how far we can go with personalising residential care for forty or more people living together.

Last week’s blog from Jaimee touched on person-centred practices with people living with dementia. This week, we want to share how we are trying to demonstrate this in a care home with forty-three people living with dementia.

We are trying to work at two levels:

1. That people living with dementia direct their own support on a day-to-day basis. We therefore need to know what matters to each person (what is important to them) and what good support looks like. We record this as a one-page profile.

2. That people have an upfront resource allocation that they can determine how to use. Each person will have two hours of individual one-to-one staff time each month that they can spend however they want, doing something that is important to them, where they want (in home or community) and choose who they want to support them.

We have started learning about this with Ellen who lives at Bruce Lodge and is 98. She has two sons, Stan and Roy who visit her. It is important to Ellen that she sits near the window or patio door where she can look out. She counts the planes which fly over and will tell you exactly how many have flown by. She loves watching the squirrels playing about in the garden. Ellen watches who is coming and going around the home and must always be supported to sit where she can keep an eye on what’s happening both inside and outdoors!

If you went to Bruce Lodge, you are also likely to hear Ellen singing. She is a wonderful singer and often sings Christmas carols in the Summer to raise a few smiles! She takes pride in her appearance and loves to have her hair tied up or plaited, with a bobble. A big Manchester United fan, Ellen also enjoys watching horse-racing.

Gill (From H S A who is supporting Borough Care) gathered this information with Ellen, and by talking to Stan, Roy and the staff who know Ellen. She also gathered detailed information about how to support Ellen well.

Here is what you would need to know if you were responsible for supporting Ellen:

• Ellen must be kept warm at all times.
• Always support Ellen to sit where she can look out of the window.
• Ellen loves birds – chat with her about the birds in the garden and when it is warm help her into the garden to feed the birds.
• Ellen must always be wrapped up well even if it feels warm outside – she is prone to chest infections & bouts of pneumonia.
• Know that Ellen will have lots of little naps during the day – she says there’s nothing wrong with that at 98!
• Know that Ellen will sometimes shout at you and say she wants to die. She will usually feel better after a cup of tea and a cream biscuit. Know that chatting to her about Stan and Roy or looking out at the birds and squirrels helps too.
• When Ellen is very vocal and upset, know that what works best for her is some time to herself.

Now our challenge is to make sure that all staff know this and act on it. When it came to ‘spending’ her two hours a month, Ellen said:

“I would love to go out to a cafe for a brew and a cake, or the park watching people, the dogs and the children playing. Then reading the war memorial on the tree in the park for the animals lost or who were a part of the war effort.”

Lisa, the manager at Bruce Lodge, is now looking with Ellen at which staff member she wants to support her, and how to make this happen on the rota.

Is personalisation in care homes possible? Can we offer more personalised support to people who live in residential care, or should we, as some have suggested, be putting all efforts instead go into closing congregate living like this? Please share your thoughts.



Ellen's one page profile



 

Treating people with dignity & respect means changing the way we think

Posted by Jaimee

Are we a society that cares about each other and values the contribution all people make, regardless of age and disability? On the back of the Panaroma episode last week Undercover: Elderly Care and Louis Theroux’s documentary Extreme Love, I witnessed and participated in several conversations about people’s values and a perceived lack of respect and appreciation for older people and disabled people and those that work for and with them.

While I can in no way suggest that these concerns are unjustified, and that something urgently must be done, I wanted to share a story that provides – to me at least – some reassurance that there are people out there who do care and who are working hard to provide care and support in way that treats people with dignity and respect.

Tricia is the manager of Vale House, a residential home in Oxfordshire that provides support to people who have profound mental health needs due to their dementia. She describes her work:

“It would be very easy for us to forget that our residents are individuals with their own personal history, background, things they like to do and things they are proud of. We’re helping to bathe and dress them, and have their meals in a day’s work. The easy way to do it would be just to treat everyone the same, to presume that all people over the age of 60 like to sit in a chair in front of a television for most of the day, or that they all like the same food. It would be very easy to get into the wrong way of doing it, but that wouldn’t be to use good person-centred practice.”

“If my mother was ill, I would want people to remember who she was, what her background is, and the things she used to like to do. Those things are very important to us here. Indeed, the whole process goes much more smoothly if we treat people as individuals. Every day and every moment in someone’s life is as important as the moment before. A moment in one of my residents’ lives is no less important than a moment in mine. I don’t throw away those moments and we shouldn’t do that for people with dementia. It really matters that we find out someone’s history and interests.”

Tricia and her team had helped a woman called Marjorie who, during an assessment in her previous care home, had sat quietly and not engaged in conversation. When talking with people who knew her, Tricia learned that Marjorie used to play the organ in her local church and that music had been an important part of her life. So when Marjorie came to live in Vale House, Tricia’s team decided to spend time with her for a short period each day to see if she could pick up tunes again. They would sing hymns and she started to pick them up and play them. Marjorie started to regain some dignity and went to concerts with a volunteer.

Person-centred practice, as a way of delivering personalisation in health and social care, does not necessarily need additional funding for it to make a massive difference to a person’s life (though I’m not suggesting that funding isn’t an important issue that needs addressing). But what I do want to make clear is that taking into account people’s whole lives, building their capacity and acknowledging the contributions they make, as individuals and as part of a community, can help solve some of the problems around ensuring all people are treated with dignity and respect. It requires - at the most basic and fundamental level - a different way of thinking. Thinking in a person-centred way helps us to understand and act on what matters to people, how they want to be supported, builds on their assets and enables them to become full members of their community.

As Louis Therox writes:

“However much is taken by dementia, something always remains. There can still be a person beyond their words and their memories, a spirit, for want of a better word, and a continuity with the person they were.”

Person-centred approaches help find this continuity and demonstrate that we do care and value all people, regardless of age or disability.

Co-production: moving beyond tokenistic consultation to real change

Posted by Helen

Last week I was working with colleagues to find out what we’ve learned from testing the forthcoming ‘Progress for Providers’ tool Checking your progress in delivering personalised support for people living with dementia.

My colleague Gill told me how some people found the section on choice and decision-making particularly challenging. I found this interesting because at the Guardian live debate on dementia last week, personalisation, choice and control barely got a mention. Yet this is the essence of personalisation in health & social care, and we have to make this work with people living with dementia, and with everyone.

In day–to-day life, when you go to the hairdresser or barber, you expect to explain exactly what you want, and for this to be delivered. Some people may also be interested in being part of a focus group to look at the ‘customer experience’ at that hairdressers, or be interested in testing out a new range of hair products, or being a model for new trainees. Most people will just be content to get their haircut in the way that they want to.

Involvement for ‘service-users’ in organisations is no different. Each individual must be central to decisions about their own lives, and some people will want to be more involved in how the service is organised and developed.

We know that to deliver personalisation and for people to have choice and control in their lives, it requires going far beyond ‘consultation’ and ‘involving people’ and focusing on ‘co-production’.  Most of the talk about co-production still focuses on people’s involvement in service design, development or evaluation.

However, I don’t think that there is enough focus on what co-production means in people’s individual lives. That is, co-producing decisions about people’s individual service, and what that should look like.

To do this requires people to have comprehensive and clear information about what is possible and what is available to them. We (those of us supporting individuals in whatever role we play) need to know how that person makes decisions and communicates them.   Where people do not have capacity to make decisions themselves, we must ensure advocacy and decision-making always remains in the best interest of the individual.

Consider Jenny’s story. She has dementia and has lived in a residential home for six years. She wandered around the home day and night, hitting out at staff members, refusing medication and never communicated verbally.

Staff committed to spending more time with Jenny to observe her in the home so they could find ways to understand her. One of the many things they learnt was that touching and feeling things really matters to Jenny. She would often carry towels around with her and has her own basket of different fabrics in it. This helped staff to understand why it was important to Jenny that she holds a piece of ribbon and runs it through her fingers when staff assisted her in getting ready.

They also developed a communications chart for Jenny–they discovered that if she puts clothing into her mouth, she is thirsty, so staff should offer her a drink and in her favourite mug.  When she begins to shout when using the lift, they found it was the gap between the floor and the lift that made her anxious, so staff need to reassure her gently and link arms with her. Working with Jenny to find out what is important to her and how she communicates helped staff coproduce the way she is supported.

Person-centred practices have an important role here. They contribute to people having choice and control over decisions about their life, as well as contributing to service change.

Person-centred practices	How it can contribute to people having choice and control over decisions about their life, and contribute to service change?
Good days and bad days	This person-centred thinking tool can help people have more control over their days. Knowing what a good day is like and what a bad day is like, tells you what the person wants their days to be like.
Relationship circles	A relationship circle tells you who people have in their life. You can then have conversations about what this means to the person in relation to their life and support. Do they want to see or be in touch with people more? Do they want more people in their life? Are there people who they want to have a role in making decisions with them, for example, through a circle of support?
Communication charts	We cannot enable people to have choice and control in their life unless we know how people communicate. This applies to everyone.
Decision-making	This is the most direct person-centred thinking tool for people to have more choice and control in their day to day life.
Matching	One of the most significant choices someone makes is who they want to support them, or who, if anyone, they want to live with. This person-centred thinking tool helps to get the best matches.
Person-centred reviews	People have more choice and control in their lives through having opportunities to review what is working and not working for them and thinking together about what needs to change to keep and build on what is working and change what is not working. In a person-centred review people can talk about what they want in the future, what outcomes they want in their live over the next year, so that they are directing and designing their life and service.
Person-centred recruitment	Making sure that the person is at the centre of decision making about selecting and recruiting their staff.

These tools aren’t complicated – just a way to enable people who support others to think differently and have a different conversation.  Importantly, person-centred approaches are a way for organisations to move beyond ‘tokenistic’ consultation with individuals on service design, and provide real empowerment to the people who use services.  By working in this way, we will start to see changes and improvements to the way in which people – including those with dementia – experience care and support.

 

Having a different conversation

Posted by Jaimee

The personalisation of social care services is more than just personal budgets.

That is, it’s more than just handing over money to a person so they can choose how they want to be supported.

We would argue that personalisation is about seeing people as individuals and equal partners in making decisions about care and support.

It’s about treating people (and families and carers) with respect.

It’s about not making assumptions about who people are and what they might want to do based on labels or lifestyles.

And, if done well, it can work with everyone, even older people – despite what the headlines might suggest.

Take Arthur’s story for example. At 86, he had been living in his own flat for 35 years and was supported by the local domiciliary care services. But small things were turning into big issues, which risked him being “put into a home” – something he was “terrified of”. Arthur wasn’t having his meals served “piping hot”, meaning he was throwing his food into the garden. This created problems with his neighbours and worse, a rat infestation. His poor eyesight meant he would hit out at staff that came to get him up in the morning because he thought they were burglars. And when he couldn’t find the £10 note he always kept in his pocket because staff had put it away for safekeeping, he would get distressed and struggle on his hands and knees for hours looking for it.

Gill, a person-centred planning coordinator, spent an hour talking with Arthur to find out about his past, what made a good or bad day for him, how he liked to be supported and what kind of routine he likes. She used this information with his supporters to find out what was working and not working about his care and what needed to be done differently.

Now Arthur’s meals are prepared and frozen by his daughter so that care staff can just heat them up until piping hot and spend their time talking with him while he eats. His supporters will always call out to him from the bedroom door to let him know they have arrived to help him get out of bed, and they will never take the £10 from his pocket. He is now eating well, has company during the day and no longer any problems with his neighbours or rats.

At the most basic level, personalisation is about thinking differently and having different conversations. Small but significant changes meant Arthur’s life improved and that he was able to stay at home longer. These different ways of thinking can be grouped under the heading of person-centred practices.

“When people not used to being listened to are heard by people not used to listening, real change is made.”

Then there’s Florrie, a woman without any family, who lived in residential care and was very isolated from staff and other residents. When the people who supported her were encouraged to use person-centred thinking tools to have different conversations, including finding out more of Florrie’s history, they found she was a passionate cook and a former housekeeper. Staff could then increasingly involve her in life at the care home. Florrie became more than just another person to feed and wash. Relationships blossomed so much that Florrie sewed patchwork blankets for the staff’s grandchildren.

There’s also the story of Sam, an older man living in residential care with no family. He had lost touch with friends, but through using person-centred practice, the staff supporting him found he was a keen lawn bowler. They matched a staff member at the home with a similar interest and helped him reconnect with his mates at his old bowling club. While he can no longer bowl, he now writes their club’s newsletter and is enjoying the reunion with his old friends.

Simple tools created improved outcomes for people. And this is where we hope we can help.

As the debate on personalisation of health and social care in England continues, me and Helen will aim to show through as many real life examples as possible, that by doing things a little differently, and with determination and patience, personalisation can work for all people at every stage of their life.

Person-centred practice helps people be heard. It finds solutions that changes people’s lives, while also changing the culture of organisations that provide care and support services.

This isn’t something we’re doing because the government says that there is a target to meet 100% personal budgets by 2013. Whether there is a target or not is irrelevant. It is because, from a human perspective, this is the right thing to do.

When faced with a barrage of negativity and challenges, we try to remember that delivering personalisation through person-centred practice supports the work of the disabled people’s movement – who have fought and continue to fight for the right to live full and independent lives.

Person-centred practice is a way of ensuring people, including older people, are treated with dignity and respect. The way we would like our parents and grandparents to be treated and the way we would expect ourselves to be treated when it’s our turn to be labeled “an older person”.

To deliver personalisation, you need to know what is important to a person, how to best support them, the way they communicate and make decisions, and what is working and not working about the way they are receiving care and support.

Person-centred practice enables you to have that conversation. As we hope to show you in our posts over the next few weeks and months.