Creating Circles of Support for people with learning disabilities

Friday, 6 February 2009

Example from practice

Ted died on 27 May 2004. The death certificate stated that this was due to a
heart attack, but this was changed after the inquest to ‘aspiration’. He was 61
years old. He had a severe learning disability and virtually no speech. He had
been admitted on 5 May 2004 hospital due to problems with urine retention.
He was discharged three weeks later, despite the fact that his care staff raised
concerns about his health. The following day he collapsed and died.
Ted’s family complained to the hospital, the GP practice and subsequently to
the Healthcare Commission.
Ted developed urine retention problems and was admitted to hospital for an operation. After the operation he got out of bed and fell. It was suggested that this could have been because he had a stroke or heart attack. He was then admitted to the intensive care unit with a postoperative infection. Here, it was confirmed later that he had suffered a mild heart attack.
Ted made a good recovery and one week later he was transferred to a general medical ward. The following day, the hospital contacted the NHS residential unit where he lived and said that they wanted to discharge Ted that day. This was despite the fact that his condition had been assessed as “concerning”.
Ted had been agitated and wandering around the ward during the night. His sister said that this was unusual and in her view, a sign that he was distressed.
The senior charge nurse at Ted’s residential care home was not confident that he
was well enough to leave hospital. In particular, the care home staff were worried because Ted was not able to swallow properly and he was still bleeding when he urinated.
As Ted’s residential care home was an NHS unit, the hospital felt that it was appropriate to discharge him. A member of staff was sent to collect him. It is not clear what verbal or written instructions were given to explain Ted’s care needs.
All night, staff were concerned about his condition and Ted was watched closely. It was noted that he seemed chesty and unsteady. In the morning, the nurse in charge of the unit noted that he had a bloodshot eye, unsteady gait, chesty cough, was walking unusually fast and had blood in his urine. They called the GP the following morning and he arrived later that day.
The GP assessed Ted’s condition and said that there was no need to return him to hospital.
Ted sat down and ate a communal meal. He began to vomit and then collapsed.
The care staff called an ambulance and Ted was sent back to the hospital where he died shortly afterwards.
An inquest was held and stated that Ted had died from aspiration pneumonia and that a simultaneous heart attack would have hastened his death. The post mortem report stated that he had aspirated a large amount of food into his lungs just before he died.

• Was Ted discharged from hospital too early, given his special needs and the
fact that the residential staff expressed concern about the state of his health?
• Was it reasonable for the hospital to assume that the care home had the
skills to support him?
• Was a thorough assessment of Ted’s ability to swallow carried out by speech
and language therapists before he was discharged?
• What information was the care home given about Ted’s swallowing ability?
• Were any instructions about how to feed Ted carried out correctly?

Thursday, 5 February 2009

Supporting individuals to say what they want out of life

Mark Williams talks about the impact good person centred planning can have and shares some real examples and experiences


The Person Centred Plan

The Life Options Project has been set up to help young people and those who support or care for them to plan for a new adult life after school finishes. It is our job to support people to find different ways to communicate what they want and need out of life. This 'Person Centred Plan' is then used to make sure that 'Individual Education Plans' and 'Community Care Plans' really listen to (reflect) what the person wants. It should also make sure that the services and opportunities offered to people are very close to what the person wants and needs. To help you to get a real picture of how this can work in everyday life we want to share some real stories.

Who is the person at the centre of the plan?

One of the biggest things missing from most people's individual plans is a real description or picture of who the person actually is. In Person Centred Planning we make a lot of effort to make sure that we know who this person is (their character), what their life has been like, who and what is important to them and how they like to be treated or communicated with. A good way to do this is by working with them on making a PERSONAL PORTFOLIO. It is very important that this 'document' is in a format that can be used by and is of great interest to that person, but also that it can be understood by people they want to introduce themselves to. That means that we have to think very carefully about what will work.

For example, Trystan has always enjoyed 'Read-Along' books, so we are helping him to make his own story about himself. It has a section about 'Growing up-Fond memories', a poem about the important people in his life, what his school week is like, his favourite activities at home, his own hobbies and fascinations - mini cars, insect collecting and visiting haunted houses! It also includes his favourite out and about activities including riding the scariest theme park rides, his holidays, his communication and support needs and a list of ambitions for the future. The book will feature lots of pictures and photographs chosen by Trystan and his family, and will be produced in Welsh and English because, although Trystan's language is Welsh, he needs to speak to people who use both languages. Finally, he has been lucky enough to get the help of one of his favourite TV characters to make the tape which goes with the book - 'Barry Welsh'.

What is so useful about a portfolio like this is that it can be used, not only to make sure the plan is actually about this person Trystan, but also as an introduction and communication aid - it will help new people to get to know him. Other examples include Jamie who had help to make his own Newspaper, Andrew, who used a wallet with personal credit card-sized introductions and photo's, Robert who made a video, Joyce who made a box to hold her collections, and Fariana (who has a sight impairment) who used a dowry box (from her culture) with a collection of objects that she could feel and smell to show people what is important to her.

Inviting people to help with your plan

The most important person to help make the plan is the person himself or herself, but it is also a good idea to help them to ask or invite others who they know and like, to help out. These can include family, friends, neighbours, advocates or volunteers and support people such as school, day service or house staff. If they cannot all get to one get together then perhaps a couple of sessions can be arranged. Trystan and his family recently invited people to get together at their home - 13 people turned up, including his grandmother and great grandmother, an auntie, cousins, a friend from school and his family aide. We are hoping another session will be held at school. After welcome drinks and food, a successful planning session was held and the group plan to get together 3 or 4 times a year to see how things are going. Some people call this type of group a CIRCLE OF FRIENDS or CIRCLE OF SUPPORT, but you don't have to give it a name.

Making a plan for the future

To help people in making a plan for the future there are different ideas that can be used. For Trystan's plan we used something called MAPS, but there are other ways to do this which include PATH, Personal Futures Planning, Essential Lifestyles Planning and Individual Service Design. All of these planning tools find ways of bringing the person together with other invited people, asking a lot of questions, looking for ideas, and working out ways to help the person towards a better life or a new challenge. Using MAPS we were able to find out much more about who Trystan is, what he is good at and enjoys, what an ideal future might look like and what action we might need to take. To do this there were 2 'facilitators' - people who ask the questions and write down or draw what was said and we used big sheets of paper that everybody could see and used words and pictures that we could all understand. The meeting took 2 hours and some of the things we found out were:

· That Trystan is a difficult to understand sometimes, but he is also very strong willed and funny and knows a lot about the things he likes.
· That Trystan is good at lots of things - dancing, drawing, copying voices, riding his bike, doing things on the computer - and sometimes he can do several things at once.
· That Trystan's ideal future might include - gradual changes, still doing the things he likes, but trying new things such as College or employment - maybe working in a theme park!
· We need to help Trystan in his plan by - helping him to finish his portfolio, involving the school, developing a circle of friends in school, finding out about local day services and direct payments, visiting the local College and holding another get together in 3 months.

You can use these planning tools too

We have found that by using these different ways to help people plan, that people can actually achieve the life that they want. We are confident that these plans will lead to lots of new opportunities, even if the person has got very complicated disabilities. We are finding that Care Managers will listen to these plans, that local colleges will make lots of effort to include everybody, that people can have jobs if they want, that people can have respite care in lots of different ways and that people can access direct payments if that suits them better.

We believe that person centred planning is different because:

· It is owned by the person and therefore they want to be involved
· It is about the whole person and helps them to feel valued
· It is about what the person wants and means that they are listened to
· It is creative and different which means it is interesting and meaningful
· It is about making things possible meaning that the person is happy and motivated
· It is about working this out together, about sharing support

If you want to find out more about finding better ways of supporting people to say what they want out of life, please read the Life Options leaflet, or you can contact us to find out more about our Information Service and Newsletter. We have lots of information about helping people to plan.

Contact Mark Williams or Kelly Gammon on 01554 746782 or 01554 746806, or email us at

Tuesday, 3 February 2009

If I Could

If I could turn my head and look into your eyes,
Would you see me?
If I could stretch out my arm, and touch your hand,
Would you feel me?
If I could move my legs and walk with you,
Would you follow me?
If I could talk to you about the things you like,
Would you sit with me?
If I could cry tears of sadness when things go wrong,
Would you comfort me?
If I could be a shoulder for you to cry on,
Would you lean on me?
If I could hear the music, and feel it’s beat,
Would you dance with me?
If I could tell of adventures, of holidays spent,
Would you share yours with me?
If I could paint a picture, of how I felt,
Would you listen to me?
If I could do these things, would you be my friend, would you laugh with me?
If I could do these things, would you be my friend,
Would you want to be?

Pam Johnson
My dreams

I know that I’m disabled, but there are things that I’d like to do.
And maybe if you’d help a little, my dreams might just come true.
I don’t just want to sit here, and sleep my days away.
I want to live my own life. I want to have my say!

I’d like to be impulsive, and not be the one to be told,
I’d like to make my own decisions, I wish I could take some control.
I’d like to wake up early, and decide what I’ll do today.
I don’t want this to be up to you, I’d like to do it my way.

I’d like to do a parachute jump, and feel myself fly through the sky.
But you’d have to do a risk assessment, and the risk would be far too high.
I’d like to go on a holiday to some exotic and far away place,
But I know I’d need lots of equipment, and it wouldn’t all fit in my case.

I wish I could have a social life, with friends that I don’t have to pay for.
Friends that like me for who I am, when I need them they’d knock on my door.
I’d like to have someone, that I can love, and someone who loves me too,
But I don’t get chance to meet anyone, so the only person I know is you!

I’d love to go to the seaside, feel the sand between my toes,
I’d listen to the waves break, and in the sun I’d doze.
I’d like to dip my hand, into an ice cold, rippling stream,
Or visit Buckingham Palace, and the places I’ve never been!

I’d like to go to the local pub, for a lager and a meal.
But we always go to the cafĂ© - don’t you realise how I feel?
And on Thursday night it’s jazz night, I’d love to go to that!
But you finish your shift at ten ‘o’ clock,
So there’d be no-one to bring me back!

I’d like to choose eggs for my breakfast and maybe an orange juice too.
I know it’s only a small thing, and it’s probably unimportant to you.
But I’d like to take control of my life, or at least a manageable part,
I just need a little support and help. So please don’t tell me I can’t.

I know that I’m disabled, but there are things that I’d like to do.
And maybe if you’d help a little, my dreams might just come true.
I don’t just want to sit here, and sleep my days away.
I want to live my own life. I want to have my say!

By Pam Johnson
Are you listening to me?

I wish I could have lay in bed, and dreamt the day away!
I had a splitting headache. But I didn’t have a say!
You just pulled back my covers, as I curled up in a ball,
‘Run the bath, I think she’s awake’ you shouted down the hall!

I tried to make a gesture, to make a little sound.
I pulled my knees up to my chest, and tightened my arms around!
I tried to say, in my own way, that I didn’t feel too well.
I pleaded with my eyes to you, but you couldn’t even tell!

You asked me what I’d like to wear; I didn’t have chance to reply!
You would have known that I don’t like wool, if you’d looked me in the eye!
Instead you just proceeded; you dressed me in that sweater.
You didn’t realise it made me itch, that a T-shirt would have been better!

You wheeled me down the corridor, and sat me in the lounge.
I couldn’t see out of the window, so I tried to turn around.
You played the music way too loud, it really hurt my ears!
I’m sure I told you I don’t like rock, I thought I’d made that clear!

You didn’t hear me say to you that I thought the food was bland.
I tried to shout it loud for you, to make you understand.
I’d rather have toast and jam today, but you didn’t give me a choice!
You were talking about your shopping trip, and you didn’t hear my voice!

And did you notice when I was eating, that I would have liked a drink.
A nice sweet coffee, or a cup of tea, but I guess you didn’t think!
You didn’t even look at me, so how could you possibly see?
What’s the point in trying to speak, if you’re not even listening to me?

I wish I could tell you how I feel, to make you understand.
I wish I could tell you I’m feeling down, and I just want to hold your hand!
I know I don’t communicate in the way that you think I should.
But if you took the time to listen to me, in a while I’m sure I could!

By Pam Johnson
My contribution!!!

I work as a learning disability nurse at a Nursing Home, in the East Riding of Yorkshire.
This is part of the Spice Trust, and is a registered nursing home for people with learning disabilities and complex needs.
Care at the home is delivered by the Humber Mental health teaching NHS trust, in conjunction with the East riding of Yorkshire council as a section 31 agreement.
The majority of the people who live at the home require maximum assistance in most, if not all aspects of their everyday life.
For example, people often have difficulty with communication, with eating and drinking, with continence and in maintaining their personal hygiene, and because of people’s physical disabilities in mobilisation.
People with profound and multiple learning disabilities are known to have more complex healthcare needs than those of the general population.
Those conditions which are known to be more prevalent include mental health problems, epilepsy, visual and hearing impairments, thyroid dysfunction and skeletal malformations caused by conditions such as osteoporosis.
This said, people with learning disabilities, and particularly those who have profound learning disabilities continue to remain quite isolated with regards to health action planning.
These health inequalities may be largely due to a number of barriers that currently exist for people with learning disabilities.
One of the main barriers we’ve found, in developing person centred health action plans - is with communication difficulties, which affect a large proportion of people who have profound and multiple learning disabilities.
A person’s health status can very easily become compromised, because someone may lack the ability to recognise that they are unwell, or if they can, they are often unable to communicate this to their carers or to the people around them, and get the treatment or support that they want.
So a person with profound learning disabilities is often totally reliant on their carer to access healthcare and get the treatment they require - and because of this health problems all too often go unrecognised.
Over the past 2-3 years or so, we have been working extensively with individuals, in developing channels of communication in attempt to reduce these barriers and tackle the health inequalities.
The introduction of individual communication charts has been really useful in developing these channels - enabling us to begin to understand how people are communicating to us, and anticipate what an individual is attempting to say.

Using this knowledge we’ve been able to move forward, and were now beginning to develop person centred health action plans that are both meaningful and appropriate to meet the complex healthcare needs of individuals at the home.
People are actually beginning to make choices and decisions about how they live their lives - these might be small decisions – but ultimately big decisions are the outcome of small decisions - so choosing what to wear, or where to sit, or what you want to eat for breakfast, may seem insignificant from our point of view – but these small changes are beginning to make people feel more effective and in control of a manageable part of their lives.
Carers are now more able to focus on specific areas of the person’s life, and recognise the interface between a person’s health and the rest of their lives, so actually consider from the person’s perspective, what good support looks like, and what they need to do in order to link people to the services or treatment they need or provide the appropriate support.

Because Information and planning are often not accessible to service users, (particularly those with profound and multiple learning disabilities). There is often the possibility that they may begin to feel at a disadvantage, or even feel left out of the whole planning process.
So a lot of our work has revolved around making information and planning more accessible and the active involvement of individual’s in the assessment of their own health needs is being optimized by using clear language, illustrations, and digital photographs in order to depict specific areas of the persons life.

In addition to the paper version of the person centered health action plans, we have also been developing and implementing approaches to individual multimedia profiling.
This is a process which creates a personal catalogue of video clips, digital images, graphics and audio on the computer which build up a holistic profile of an individual. The person could, if they were able, be in control of their own information through switches or touch screens, and could choose when and how to share it with others.
So Multimedia Profiling makes information easier to share. And what were hoping is that as this develops it could be used to support people in becoming more independent, getting the support and care that they want, linking people to and accessing the services that they need.,
Ultimately, people can begin to feel involved and more in control of their lives.
In order to develop all the work we’ve been doing and move things forward with regards to person centered approaches and health action planning were concentrating on staff training programmes – we are currently in the process of delivering training workshops across the Spice Trust, for all staff - which is focusing on working with person centered approaches, developing communication skills and intensive interaction, also giving staff and carers the skills to enable health facilitation for all people with learning disabilities..