Ultimately the main aim of the different groups was to improve
the quality of life for people with MND by providing access to uniformly high
standard of care, throughout their illness.
At one stage there were 14 different working
groups looking at issues including:
These groups, often made up of the same
core people, included:
-
health and social care professionals
-
volunteers from the local branch of the MND
Association
-
people with MND and their carers.
They used the plan, do, study, act (PDSA)
cycle to plan service improvements which involves:
-
testing the changes on a small scale
-
assessing whether there has been an
improvement
-
reflecting on this and refining ideas as
necessary.
This worked really well for them as it helped focus their ideas and by implementing changes in small
stages ensured that all felt involved and positive about the changes.
Better communication between the large
numbers of professionals caring for people with MND is very important to
improving their care. Previously the MND community nurse specialists were often
working in isolation and found it difficult to meet others involved in the care
of a person.
Multidisciplinary meetings are now held every
two weeks at LOROS for everyone involved in the care of someone with MND.
Regular attendees include:
-
MND and respiratory specialist nurses
-
Palliative care consultants
-
Neurology registrar
-
Allied health professionals, such as speech
and language therapist, specialist dietician and the community physiotherapist
-
Volunteer visitor from MND association.
Other team members such as the Hospice at
Home team or community nurses also attend on an ad hoc basis if they wish to
discuss one of their patients.
As well as improving communication, team
members developed a much better understanding of one another’s roles through
discussions about complex care needs which in turn led to improved outcomes for
the patients they are looking after.
These meetings are followed by clinics
where a person with MND and their carer can see different members of the multidisciplinary
team as appropriate.
As these clinics are held at LOROS, they
also provide an introduction to the hospice and the services they provide for
people with MND, resulting in increased attendance at services such as respite
care, day care, counselling and complementary therapy by this patient group.
It was identified that support for patients
and their families at the time of diagnosis as well as on an ongoing basis
could be improved.
To address this, activities among others included developing
a simple check list for use before telling a person they have MND, covering
items such as:
-
asking the patients if they wanted a
relative to be with them
-
ensuring that they were told in a private
place with either the MND community nurse or a senior nurse present.
This use of this check list is monitored and results
indicate a vast improvement in the way that people are told about their
diagnosis.
Other activities included:
-
re-establishing a support group run by
Leicestershire and Rutland branch of the MND Association
-
compiling a list of local contacts specific
for people with MND, so that they know who is responsible for giving what
information when.
Often people with MND end up dying in
hospital against their wishes, when more appropriate care could have been given
at home.
This was something the local ambulance
service was aware of and wanted to address, so the group worked with them to
develop a system of recording the wishes of a person with MND, such as whether
they:
-
wished to stay at home
-
had an Advanced Decision to Refuse
Treatment (ADRT) in place.
As the family of one patient said:
“Our dad wanted to stay at home rather than
go into hospital if anything happened. Initially it was a bit confusing how to make
that happen as there were so many different doctors and other people involved.
But the district nurse made sure that his
wishes were written down and that everyone knew what they were. This meant that
when the time came he died peacefully in his own home, exactly how he wanted
to.”
Since then, this has been developed to
include all people who are terminally ill and have made end of life decisions.
After the grant was spent
Find out what happened after the twelve month grant funded period to ensure that people with MND continued to receive a high standard of care throughout their illness.
