Rachel`s Story - Worcestershire Health and Care NHS Trust

Rachel’s Story
A Health Checkers Report
January 2013
Re gi s t e re d C h a rit y N o . 1 10 69 14
The Health Checkers Project
Speak Easy N.O.W. is a Worcestershire charity that
supports people with a learning disability to be
involved in planning and speaking up about
services.
The Health Checkers Project looks at health care
services. The project is led by a Steering Group of
people with a learning disability. We pay people
with a learning disability to work on the project.
Rachel’s Story
Rachel lives in Malvern. She has regular support to
live independently.
Rachel had been having headaches and blurred
vision. She went with her support worker to Boots
Opticians for a check up.
The Optometrist
The Optometrist thought that Rachel needed to
have more tests to see what the matter was. They
said they could see something that should not be
there behind her eye. They did not know if it was on
her eye or on her brain.
He said that Rachel should go to Birmingham Eye
Hospital. But Rachel’s support worker did not have
enough time to take her. They said that she could
go to the Accident and Emergency Department at
Worcestershire Royal Hospital instead.
Because Rachel’s support worker did not have
time to take her she did not get the specialised
care from Birmingham Eye Hospital.
Accident and Emergency
Worcestershire Royal
Rachel went to Worcestershire Royal Hospital to the
Accident and Emergency Department with her
support worker. They told her that she would need
to come back another day for an MRI scan.
Rachel did not understand what would happen at
the MRI scan. She was still not sure what was
wrong.
Worcestershire Royal have an alert system that
should tell them when a patient has a learning
disability.
They have Easy Read guides to Accident and
Emergency. They help explain advice and future
appointments. But Rachel was not given one.
Rachel’s support worker did not tell anyone she
may need some extra support. She was not able to
help Rachel to understand.
MRI Scan – Worcestershire Royal
Rachel was sent a letter telling her about her
appointment at the Worcestershire Royal. The letter
was not in Easy Read and it did not explain what
would happen.
If the alert system flagged up before appointment
letters are sent out then better information could
be sent out to people with a learning disability.
It would be helpful if the hospital had easy to
understand leaflets explaining MRI scans and
what will happen.
Because Rachel’s support worker did not know
what happened at an MRI scan she was not able to
explain it to Rachel.
Rachel says that having the MRI scan was horrible.
She found it difficult being in a confined space. Her
support worker stayed in the waiting room and did
not offer to come in with her.
Her support worker did not explain to the hospital
staff that Rachel may need some extra support. She
does not know if the alert system meant that they
knew she had a learning disability.
Rachel’s support worker did not provide Rachel
with support while she had her scan and did not
ask Rachel what support she felt she needed.
We do not know if the alert system told the
hospital staff that Rachel had a learning
disability, as they did not offer any extra support.
Getting Results from GP Surgery
Rachel was told that she would get the results in a
week or so. She was told they would go to the
person that referred her.
As she had not heard anything Rachel contacted
her GP. They could not give her an appointment to
come in to get the results at a time her support
worker could come with her. They agreed they
would ring her to tell her the results.
The GP told Rachel that the MRI results showed
there were small changes. But that they could not
see the full results and were not able to explain
what it meant.
The lack of availability of a support worker meant
that Rachel was not able to go to see her GP to
have the test results explained face to face.
Rachel’s GP’s records should have shown she has a
learning disability. They should have realised that
she would have found it difficult to understand
and remember information over the phone.
Neurologist Appointment
Malvern Community Hospital
Rachel was told that she would get an appointment
to see a neurologist. She had a wait over a month
for an appointment. She was sent a letter telling
her about her appointment at Malvern Community
Hospital. The letter was not in Easy Read and did
not explain what would happen at the appointment.
There is no alert system at the Community
Hospitals to let them know that a patient has a
learning disability. If there was they could send
out Easy Read appointment letters and
information about visiting the hospital.
Rachel has an Advocate from Onside. Her advocate
was worried about the support Rachel had been
getting to attend medical appointments and
referred her to the Learning Disability Community
Nursing Team.
She started getting support from a Community
Nurse before her appointment with the Neurologist.
Rachel’s Community Nurse went picked her up from
home and took her to the Neurologist appointment
at Malvern Community Hospital.
They found it easy to know where to go when they
arrived at the hospital. She likes the hospital and
thought that the waiting area helped her feel
relaxed. She had been given an early appointment.
This meant it was quieter at the hospital and there
was no delay with her appointment.
The Neurologist explained to Rachel that the
differences that had been seen on the MRI scan had
probably always been there and that there is
nothing to worry about.
As Rachel is no longer having headaches or blurred
vision that was probably caused by something else.
He said that just to be sure, he would see her again
in 6 months time.
The Neurologist did his best to explain things to
Rachel. She was happy that the Community Nurse
went in to the appointment with her. She helped
the Neurologist to explain things.
Rachel’s Community Nurse said she would write
down what she had been told, so that she could
look back and remind herself what had been said. It
will also help her to explain it to other people.
Conclusions
Rachel is no longer getting headaches or blurred
vision. She has now been reassured that there is
nothing to worry about. She has had good medical
care and been referred to specialists to make sure.
Having a Community Nurse means that Rachel now
has the support she needs to go to health
appointments and understand what is happening.
Without proper support it is very difficult to know
what is happening and what all the different letters
and appointments are for.
Not everyone has this kind of support.
Systems that tell us that someone has a learning
disability could be used better. If GPs, Hospitals and
other health care workers know that someone has a
learning disability they can make sure they get the
right support.
Easy Read letters and information will help people
to understand what is happening. This kind of
information could have explained to Rachel what
Neurologists, Optometrists and MRI scans are.
Difficult Word List
Optometrist
Someone who carries out eye tests in a local
optician shop.
Neurologist
A doctor who looks at brains.
MRI Scan
A machine that takes pictures of the inside of your
body to see if anything is wrong.
For more information about the Health Checkers
Project, please contact –
Morag Edmondson, Health Checkers Project Coordinator
01905 774247
m.edmondson@speakeasynow.org.uk
www.speakeasynow.org.uk