There are
times in our lives when we have to make important decisions and shape our
future pathway through life. Choosing your first home as an adult is such a
vast decision to make. You have to consider what part of the country it will
be, a city or in a village, near the shops and leisure facilities or do you
like a quiet life? These are common questions we all consider but having a
learning disability adds some extra dimensions to the equation. They have to
decide whether they will live with someone else or by themselves, who will be
supporting them, who will be their keyworker and how they will spend their day.
This blog is
about such decisions that a young man with learning disabilities had to make
recently, how he was supported through this process and how the Mental Capacity
Act (MCA) 2005 was applied. In the purpose of this blog a pseudonym and
different characteristics were used to protect confidentiality.
Introducing Jacob
Jacob is a 22
year old man who loves his dad, Charlton Athletic Football Club and the pop
group S Club 7. He has lots of things that are important to him including
playing X-Box, listening to music, going to the cinema, especially X-Men movies
and spending time with friends. What’s important for Jacob includes supporting
him when out in the community, helping him take his tablets and involving him
when you are talking about him.
Previously Jacob
had lived with his father but over recent years he gradually started to
deteriorate, became withdrawn, had strange experiences and started hearing
voices that weren’t there. He was seen by a Consultant Psychiatrist from the
Community Learning Disability Team and after spending some time with Jacob, his
father and looking at his history he came to the conclusion that Jacob was
experiencing a first episode of psychosis.
Initially he was prescribed some antipsychotic medication but these
appeared not to work. About a year ago Jacob became extremely withdrawn,
started to exhibit bizarre behaviour and attacked his father. He was admitted
to Atlas House, an inpatient unit under a section of the Mental Health Act. As
several antipsychotics had been tried without success he was started on
clozapine. Within four weeks of starting clozapine there was a great change in
Jacob. His father said that he ‘had got my son back, it’s like going back five
years’ and Jacob said he felt ‘much happier now’.
His father
stated that Jacob needed to become independent and live in supported living. So
his social worker started to find a few options for Jacob. Jacob trusted his
father’s choice in supported living and asked him if he will visit places
before himself. Jacob’s dad didn’t like
the feel of the first place but the next home really impressed him. So he
talked about this home to Jacob who agreed to visit.
Mental Capacity Assessment
At a Care
Programme Approach (CPA) review there were two major decisions to be made under
the MCA. Firstly, does Jacob have the capacity to decide where to live and
secondly does he have capacity to decide on the level of control and
supervision? All agreed that a Learning Disability Nurse who has a rapport with
Jacob should complete the assessment and feedback the outcome at a ward round.
This assessment took a period of two weeks.
Stage 1 of the MCA - Is there an
impairment of or disturbance in the functioning of a person’s mind or brain?
Yes Jacob
has a learning disability, autism and schizophrenia.
Stage 2 of the MCA - Is the
impairment or disturbance sufficient that the person lacks the capacity to make
a particular decision?
There are
four key points to stage 2 and the person has to pass all four elements of the
test to have the capacity to make these decisions.
Does the individual
understand the information relevant to the decision to be made?
Over a one
week period Jacob was given information about
the new home in a way he understands and in small amounts that he is able to
process. Firstly he was given a few
photos of the house before he visited and a one page profile of the staff
member who will be there on the day. He was supported to prepare the sort of
questions that are important to him. Then he visited the house with his father
and nurse and met the new manager there. Jacob was shown around the house which
he really liked. He asked lots of questions (some with prompting) like what
activities he will be able to do, who helps with the cooking and can he bring
his X-Box with him. The manager answered these questions satisfactorily and
also provided some information about routines etc. He also met and had a
conversation with the person he would be sharing the house with if he decided if
he wanted to go ahead.
During the
second week the question of control and supervision was discussed with Jacob
several times and he was given information verbally and in pictorial format. As
this was going to be a new home with support workers we talked about the average
day there, what he will be doing, with how many staff and that the staff will
be there for his support all day and night. We showed him pictures of the front
door and emphasised that this will be unlocked. We then showed him the door of
the inpatient unit (which is locked at all times) and he grasped the concept of
the difference between the two doors.
Is the individual able
to retain the information in relation to this decision?
Yes, over a
period of two weeks this information was given to him and he was able to ask
questions. He was able to retain this information every time.
Is the person able to
use or weight the information as part of the process of making this decision?
From my
experience this is the most likely part of the test that the person will fail
if any. After meeting with Jacobs several times, offering the information in
different formats I prepared a set of questions. Also I set a threshold of what
I expected to hear from him if he had capacity. This doesn’t mean he needs to
understand all the correct terms like medical language or what Deprivation of
Liberty means. He needs to show his understand using simple language. For
example if someone’s capacity was being assessed for a tooth extraction and
used the term ‘tooth doctor’ instead of ‘dentist’, in my opinion he would still
be showing understanding.
He was asked
questions with the aid of a ‘talking mat’ approach. There were three columns on the mat with
headings of ‘yes’, ‘no’ and ‘not sure’. Also to back up these questions asked,
there were accompanying photos. Some
examples of questions that Jacob was asked and how he answered:
What do you think of the new house?
‘Good’
Do you need support at this house?
‘Yes’
What sort of things do you need
support with?
‘Cooking and
shopping’
The house will have one staff there
all the time – what do you think about that?
‘Ok’
Jacob then
asked me a question ‘when I will be able to go out by myself’. I explained to
him that staff want to make sure he has the skills to out by himself, like
feeling safe when out, road safety, knowing his way back home and managing his
money. He agreed to this and said he was
happy with the support from the staff.
Then I
concentrated on questions to do with ‘control and supervision’:
Do you remember Dr. Smith talking to
you about Clozapine? (showed Jacob photos of Clozapine)
‘Yes’
I just want to check if you remember
why you take the medication?
‘To stay
calm’
Does the medication ever make you
feel sleepy?
‘Sometimes’
Does the medication ever stop you
from playing on the X-Box?
‘No’
Does the medication ever stop you
from going out in the community?
‘No’
Are you happy to keep taking the
medication?
‘Yes’
You are in hospital at the moment.
People are here to get better. The doors are locked all the time (showed
pictures of the front door). Why are the doors locked?
‘To keep
people safe’
At your new home the doors will not
be locked. What will you do if you leave to go out?
‘I will tell
the staff’
Why do we want the staff to be with
you.
‘To support
me’
I sometimes
repeated a couple of questions but reversed the question to check the answers
given and he still gave the same answers.
Is the person able to
communicate their decision by any means?
Jacob
answered all questions with plain English and said that he was happy to move
into his new home and was pleased with the support he will be receiving.
Does he have the capacity to make
this decision(s)?
On the
balance of probability I was satisfied he has the capacity to make the decision
of living in his new home and the level of control and supervision. But I recommended that the situation would
need to revisit once he has lived there for a little while as he will be basing
his answers on real life experiences.
A personal perspective
I had a
stroke around four years ago and my Trust was so supportive of me during this
difficult time. When I returned back to work I had lost all my confidence and I
had to adapt to some new limitations to what I can and can’t do. The first time
on returning to Atlas House I took a deep breath and pressed the bell and they
let me in. I had never met Jacob before but he came running up to me and said
hello and asked me my name. He then had lots of questions, like ‘do you like
X-Men’ or ‘what’s your favourite song by S-Club 7’. It was such a welcome to
the unit and I really appreciated this.
Before
having the stroke I had been teaching mental capacity since 2001 and I have
also published about the topic and occasionally carrying out mental capacity
assessments. I asked the team if I could undertake the assessment with Jacob
and they agreed. With the teams support I realised I had retained knowledge of
the Mental Capacity Act and how it is translated into practice.
I would like
to thank Jacob for meeting me at the front door on that day. Both of us have
come on in leaps and bounds since then. Jacob was discharged about two years
ago and he settled into his new home really quickly and everyone is really
pleased with the progress he has made. He has been doing a college course for
one year and his favourite class is maths! You may call me unprofessional but I
go out with Jacob once a month. We always go to Bluewater where we go to the
cinema, Disney Shop, HMV and Waterstones. I wish Jacob all the best for the
future and continue his journey through life.
Steve Hardy
Practice
Development Nurse
Adult
Learning Disability Service
Oxleas NHS
Foundation Trust
