Velcro man

Some of the details of the following story have been changed.

Alfie is 90 years old.  Irene, his wife of over 60 years had been taken into a nursing home.  They were both finding it hard to cope at home in their bungalow as her dementia progressed.  Alfie is a very proud man and visited Irene every day in her home.  It was important to him that he was always well turned out and he took great care over his appearance.

He had a "wobble" and was admitted to hospital, just to be safe, so he could be assessed and the right level of support given to him.  Following multiple moves within the hospital, Alfie was discharged to a community hospital for rehabilitation.  He had a number of assessments in both the acute and community hospitals, including stairs assessments.  Eventually he was discharged home with a commode.

The system was aware of Alfie now and various standard packages of care started to be offered, including help with dressing and meals on wheels.  He had also begun to be admitted to hospital following "wobbles".  But he remained fiercely keen to visit Irene and found it distressing when he couldn't do this.

When Irene sadly passed away, his difficulties in coping seemed to increase.  He had pretty poor eyesight for a start and trouble with his hands meant that sometimes he couldn't manage some simple tasks of dexterity.  More admissions followed, with more assessments and increased packages of care to help him maintain his independence.

On his last admission, when we first met him, he had experienced another "wobble".  Within the first 24 hours of his stay he had been moved to four different wards and had been put in seven different beds.  When he wanted the toilet he got disorientated and couldn't work out where the toilets were.  He was given a bottle, but due to his dexterity and eyesight problems (it was the middle of the night) he missed and soiled himself before slipping on the wet floor.

Labelled confused and incontinent a further sequence of assessments was initiated.  He was now on a pathway to a nursing home via a community hospital.  The system had decided that he could no longer cope at home so he needed more intensive support.

We set about trying to understand his story.  When we spoke to him he told us that he hated the commode he had been given so, even though he found it hard to see where he was going at night, he would try and use the toilet anyway.  On occasion that meant he would fall.  Sometimes he would tell the people who came in to help him with his dressing and meals on wheels.  They would tell the GP and he would then be taken into hospital.

He told us that, although everyone was very nice, he couldn't understand why he was in hospital and why so many people came and asked him so many questions.  He got upset when he talked about how often he was moved around and how confusing that was for him, but he insisted that he wasn't "confused".  He didn't want to bother the nurses but when he did ask for help he felt that sometimes he wasn't listened to.  He was also distressed about being told he was incontinent.  He couldn't understand why that would be.  He did find the repeated stairs assessments amusing though and had given up telling people he lived in a bungalow.  He just wanted to be left alone to live his life.  As grateful as he was for the help, he didn't really like the idea that he needed help with dressing.  He also liked to get out for lunch, rather than wait in for the meals on wheels.

So we had a person who was having some difficulties in maintaining his independence, due to a combination of factors including his poor eyesight and problems with his hands.  He was also lonely having lost Irene and missed mixing with his friends.  That made him quite down.  So could we do anything to help and maintain his independence?

The first step was to install automatic lighting in his bungalow to help him get to the toilet at night.  Since then there have been no falls.  We arranged for a friend to take him out to meet his friends for lunch.  We also noticed that he liked toast but couldn't get the toast out of the machine.  The answer?  He started buying slightly taller bread so he could easily remove the toast.  But the thing that really inspired him was the idea of putting velcro on his shirts.  That way he could dress himself.  He would take great delight in showing all his friends too and earned the moniker "Velcro Man".

But so what?  What does all this mean?  Well, in this case the pattern of repeat admissions was broken; the standard packages of care were removed as he had no need for the support that was being offered.  And the inevitable admission to a nursing home was avoided as were the repeat admissions to the community hospital.

Having understood him better he started living life rather than living the life the system had given him.

Our learning?

• if it goes wrong early on, there is a glidepath to institutional care.  Alfie was neither confused nor incontinent but the system was gearing up to respond to him as if he was
• the system has brilliant assessment systems but not such good understanding systems
• the system is tasked based and designed transactionally and episodically, so much of the actual consumption of resource that people make is invisible to the system.  For example, length of stay benchmarked well but if you look at it over time a different pattern emerges
• offering a standard package of care does not = maintaining independence
• many of the solutions offered are over specified anyway and create their own demand
• the pathway approach may be over emphasised.  In every case where we have understood people, none have gone on to the pathway prescribed for them.  The chances that they are all special cause is one million to one
• micro solutions have a macro impact - expenditure in all parts of the system significantly reduced
• if we can learn and understand people at the very start costs come down, waste and harm reduces and outcomes are better
• the staff (doctors, nurses, allied health professionals) who got to understand Alfie love it, as did he (and all the others who we have met)
• its not easy to do this but understanding can become the new "normal"

The answers for Alfie, were elegantly simple but radically different.  By putting our relationship with Alfie at the heart of what we did we were able to solve his problem and give him the life he wanted, even if it was without Irene.  No targets, no pathways, no moves from one specialist service to another.  No plan.  Just understanding. And a willingness to create solutions based on this.

The challenge is to test this approach on a bigger scale.  It is still early days, and our learning is building all the time.  I am confident that the principles upon which we are building solutions with people are solid and the opportunity to redefine the way we offer support to the people who need it can be radically redefined based on knowledge.  But we shall have to wait and see.  It takes courage for leaders to operate in this way.  I hope to be able to share more, in more detail, with you over the coming months.