Occupational Therapy News OTnews April 2019 | Page 41

NEUROLOGY FEATURE
Living well with MND
A
Yvonne Dunn reports on the development of an early diagnosis support group
for people with Motor Neurone Disease and their carers
However, due to lack of appropriate referrals, these criteria were
adjusted over the initial 12-month set up period, and now include:
diagnosis of MND confirmed by a neurologist within 18 months of
referral; referral can be for complementary therapies only if required;
and referral is open to carers alone, provided the MND patient meets
the criteria of diagnosis within 18 months.
The group began by having two taster sessions in July 2017,
which allowed the occupational therapist and staff nurse to trial
sessions and explore what patient and carers wanted from the group.
The official start date of the group was September 2017, and
we have offered practical advice on living well with MND, education
sessions from a range of professionals, including a dietician, speech
and language therapist and benefits adviser, practical sessions on
basic moving and handling, tai chi, and complementary therapies,
such as massage and reiki.
We have received excellent feedback from both patients and
carers, with words like ‘valued’, ‘a tonic’ and ‘highlight of the week’
being used to describe the group.
The greatest barrier or challenge to the running of this group has
been limited patient referrals. These have continued to remain low
throughout this year, therefore we have attempted different ways
to promote and advertise the group among our peers and other
professionals.
This includes developing a new patient information leaflet,
attending MND study days as exhibitors promoting our new service,
attending local MND multidisciplinary team meetings, and we are
currently in the process of arranging to have a presence at the MND
clinic within our local NHS trust.
The group has now been running for over a year and we are
continually reflecting, reviewing and implementing change as
appropriate. We have received fantastic user feedback from patients
and carers who have been instrumental in the focus for the group.
This feedback highlights that a support group for people living with
MND is valuable and beneficial to both the patient and their carer, and
our hope is for this service to continue at the hospice.
Yvonne Dunn, occupational therapist,
Marie Curie Hospice, Newcastle,
email: yvonne.dunn@mariecurie.
org.uk.
necdotal evidence suggests that patients diagnosed
with Motor Neurone Disease (MND) have limited
access to support networks at the early stages of
their condition. Many patients also report that they
prefer not to think too far ahead as a coping strategy to this
changing condition, which can lead them to decline engagement
with any such services that may be available.
With a view to improving the experience of people with MND
at the early stage of their diagnosis, the Marie Curie Hospice in
Newcastle, which provides care and support to people who have
received a terminal diagnosis and their carers, embarked on a
service improvement project that would involve therapeutic activities,
complementary therapies, peer support, carer support and education
sessions, as part of a support group for early diagnosis MND.
This was delivered in partnership with the Motor Neurone Disease
Association (MND Association), which had approached the Marie
Curie hospice with the initial concept, and with its support, the group
‘Living Well: an early access programme for people living with MND’
has been developed.
The purpose for the introduction of the Living Well programme
is to:
• provide specialist support to newly-diagnosed patients and their
carers in an informal, supportive setting;
• offer peer support to carers in a safe environment;
• offer advice and education on how to live well with MND;
• promote health and wellbeing through the therapeutic potential of
purposeful and meaningful activities; and
• offer complementary therapies in a relaxed environment.
The aim is for the group to run one day a week, from 10.30am to
2:30pm. It can be used by patients and carers on a drop-in basis, if
required, and with the following facilitation: a staff nurse from Marie
Curie; an occupational therapist from Marie Curie; association visitors
from MND Association; a complementary therapist from Lifespan (an
independent charity in the North East that supports people with life
limiting illnesses); and other professionals as guest speakers when
appropriate, such as a dietician or speech and language therapist.
To identify appropriate participants, initial criteria for inclusion/
exclusion to the group were developed: a diagnosis of MND,
confirmed by a neurologist within 12 months of referral; the ability to
transfer with minimal assistance; and being fully continent, or able to
manage own continence.
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