Rongia Joby

Sunday, 16 July 2017

Unit 52:(M/601/2552) Support individuals with sensory loss with communications

During my time at Four Seasons Healthcare I was seconded to help as a team leader/
senior support worker in a neighbouring care home in Walthamstow - Ross Wyld Care
Home.

During part of the handover I was introduced and was given prime responsibility in
being 'Ellen's' Key worker. It was noted that Ellen had very complex communication
needs and was blind and also deaf. To our benefit and the homes benefit Ellen's
daughter visited daily and was able to teach us the simple basics of BSL with her
mother.

It was clear to me that Ellen was happy and content with her daughters daily visits
(Marian) and this was communicated by expression and contentment. I also enjoyed
making very basic simple communication with Ellen through the support of her
daughter. My only regret was that I did not ask the daughter more questions on Ellen's
capacity and level of understanding. After spending a couple of months at Ross Wyld
and also supporting Ellen as a key worker I got the heartbreaking news that Marian had
been diagnosed with aggressive bowel cancer and had been given a very poor
prognosis.

I remember speaking to Marian on one of her last visits whereby she was determined to
get better and make arrangements if she could not visit daily as she had been. She
wanted more time to teach me and educate me in communication with Ellen, she wanted
more time to be able to contingency plan if she did not get better, and more importantly
she did not want anyone to tell Ellen about her condition - she would do that herself.

Sadly that was the last time I saw her - Marian lost her battle with cancer and Ellen had
never been told of her daughters condition. Marian's daughter Vicky (Ellen's
granddaughter) - had visited on a few occasions and made it quite clear that her
grandmother should not be told of Marians passing.

Ellen was a 96 year old frail elderly lady, poor mobility, previous history of heart
attacks, blind and deaf. It was not until the 4th day that I actually really noticed the
change in Ellen's behaviour. She had not been eating or drinking or even wanting to
communicate with me - she just sat rocking in silence. Only after the 4th day did I notice
the prolonged moaning and crying that became excessive and did not stop. It was very
clear to me that Ellen needed to be told about her daughter's death and be given the
opportunity to grieve Marians death. As each day passed I noted Ellen's health and
behaviour get worse. I also remember getting in to a disagreement with a fellow staff
member who contested that Ellen must be getting dementia due to the increased
behavioural issues she was presenting. I contended that simply she missed her daughter
and no one had the decency to tell her or inform Ellen what was going on.

I approached the Home Manager with my concerns. Without doubt I had ascertained
the following:
 1. Marian was dead and had asked that she tell her own mother of her illness -
she never got the chance.
2. Vicky had requested that nobody tell her grandmother that her mother was
dead
3. Ellen's behaviour had become extreme and she was calling out and staff
wrongly attributed to dementia rather than a straightforward distressed
reaction caused by grief and loss.
4. It was clear to me that Ellen would remained distressed daily until she was told
what had happened to her daughter

I simply could not stand back and do nothing. Vicky's decision not to tell her
grandmother (she felt) was in her best interests and the loss of her daughter - in her
opinion may kill her. That was well a possibility but additionally the failure to
communicate what had happened would present an unnecessary torment on a daily
basis which in turn may also kill Ellen.

Me and the manager decided to contact London Borough of Waltham Forest

Safeguarding team - an initial case conference was held and it was all agreed but all
parties that this case presented as a complex one. I worked closely with the manager
prior to case conference and additionally during the many reconvened meetings needed.
The last case conference attendees included the following:

1. Ellen's social worker

2. CQC inspectorate
3. Ross Wyld Home Manager
4. Myself
5. Representative from SENSE
6. GP
7. Psychologist
8. Community Matron
9. Chair
10. Minute taker

It was decided that Ellen should be told about her daughter (even against Vicky's
wishes). However due to the risks associated with the distressed reaction careful
planning needed to be in place. Any risks associated with both physical and mental
health of Ellen should be addressed. This meant not only strict and careful planning for
all parties involved in the decisions but also clinical execution of the care plan.

The first and most important issue to deal with was informing Vicky that a decision had
been made in Ellen's best interest that she must be told - even if this was against her
wishes. This conversation was to be held by the home manager, the social worker and
community matron - and I did not expect it to go well. I was informed that Vicky had left
the meeting advising that she would be seeking legal advice and making various threats
against the home and social worker. None the less the action plan needed to be
followed. Following this first meeting with Vicky all other operations carried out were
notified to Vicky via letter and email.

In the meantime I noted the Ellen was getting frailer and more distressed on a daily
basis - sometimes calling out and screaming to a point where she had no more energy to
scream out. I communicated in the best way I could with the limited BSL that Marian
had taught me. We also communicated by touch and hugs - which I am sure Ellen
appreciated - even if at times she would push me away screaming further.

Now Vicky had been told those involved in the case decided to move quickly and execute
the plan needed. Ellen was seen by the GP for a physical check, the community matron
had spoken to the GP for emergency sedation if needed, and a competent and adequate
signer was in place - someone that had communicated with Ellen before. A date was set
when the lady from SENSE was asked to tell Ellen about her daughter. My part was to
be there for emotional support as Ellen was aware of me - who I was my approach,
touch and smell.

Ellen was bought into a quiet room in the building and the news broken to her - which
was heartbreaking and there was lots of tears and grief shown. Ellen did not need to
input of sedation but did have unanswered questions. I spent a lot of time with the BSL
communicator speaking clearly with Ellen and any doubts that she did not have the
capacity the understand the process were eradicated.

I remember Ellen asking SENSE "Why had she not been told?" "Why had it taken so
long for her to be told?", but more importantly I remember her clearly spelling "Thank
You" on my hand. It was a very emotional affair. I believe this to be one of the most
challenging experiences I have had to deal with in my care career - but also one of the
most rewarding.

After a period of grieving and distress we noted Ellen physical and emotional health
improve - more so I noted lots of my colleagues determined to learn more about BSL
and sign language. The manager arranged for SENSE to attend the home and carry out
training sessions for all of Ross Wyld staff. Ellen lived on for another 6 months - no
longer in daily distress. Vicky eventually came to see Ellen at the home and
acknowledged that in hindsight her grandmother needed to be told and also
acknowledged that she did not know what to do for the best.

The above gives a clear example on how I have supported a deafblind resident with
complex communication issues.

The lady from SENSE was a deafblind interpreter who showed me how it was possible
to communicate with Ellen and indeed other residents with this dual sensory loss. I have
often wondered since how many people with dual sensory loss are in care homes and
need to full support of deafblind interpreters and how often this support is offered. More
importantly how often is this resource available. There are currently 356000 deafblind
people in the UK that need this resource. Some will be totally deaf and totally blind,
while many others will have some hearing and/or vision.

What is deafblindness?

The Department of Health defines people as deafblind "if their combined sight and
hearing impairment cause difficulties with communication, access to information and
mobility".

Deafblindness is also sometimes known as dual sensory impairment, dual sensory loss
or multi-sensory impairment. Deafblind people may not be totally deaf and totally blind.

There are two types of deafblindness:

 Congenital deafblindness
People who are born deafblind communicate through the use of symbols, objects of
reference, sign language, braille and other communication systems.

 Acquired deafblindness

People who become deafblind later in life usually try to create the most suitable
environment conditions so that they can use what vision and hearing they have to
communicate. If their visions becomes worse, people with acquired deafblindness will
learn to use a form of tactile (touching) communication.

Methods of communication

Depending on their residual sight and hearing, people who are deafblind may use some
form of tactile or other communication, including:

 Deafblind manual alphabet: also called fingerspelling, this involves spelling

out words on someone’s hand in BSL.
 Block alphabet: hearing person uses the tip of their forefinger to spell out each
word in English in block capitals on the receiver's palm. This method is most
often used when communicating with members of the public and others who
are unlikely to be familiar with the deafblind manual alphabet.
 Hands-on signing: Some people who were born deaf and then experience sight
loss as an adult continue to use sign language even when they can no longer
follow visual signs. This is possible through the listener touching the hands of
the person who is signing and following their movements.
 Visual frame signing: When a deafblind person has a limited field of vision,
sign language can still be used if the signs are adapted according to their
visual needs.

Older deafblind people

The largest group of deafblind people developed hearing and vision problems as they
got older. But there is a lot of support available to help someone use their remaining
sight and hearing.

The following groups of older deafblind people will all need different types of help:

 People who have developed a dual sensory loss as they have got older - the
largest group.
 People who have adapted to blindness or partial sight during their lives, and
are now losing their hearing.
 Older deaf or hard of hearing people, whose usual means of communication is
speech or sign language and who are now losing their sight.
 Older people who have had a dual sensory loss for all or most of their lives.

Some local authorities provide guidehelps or communicator guides who act as

'communicators' for deafblind people, helping them to take an active part in everyday
life. This may mean helping them to go out shopping, sorting out their bills, or
interpreting at the doctors - depending on their needs.

It is clear though to me that where someone does not have the capability to
communicate or have lost the ability to communicate via sight and hearing that still
we have a lack of understanding on how to manage this situation. In Ellen's case it
was distressing to see her upset - and without the input from Marian prior to her
passing I have often asked myself if I would have noticed or identified Ellen's
condition changing.

More support and training is most definitely needed in this aspect as well as enhanced
awareness of the deaf blind plight.