Lancashire Teaching Hospitals Charity has received funding to run a study at Lancashire Teaching Hospitals to help support families who have lost relatives to Motor Neurone Disease.
The study is funded by the Motor Neurone Disease Association (MNDA) and the George Barton Motor Neurone Disease (Research) Trust and is being undertaken in collaboration with the University of Central Lancashire.
Motor neurone disease (MND) is an uncommon condition that leads to progressive weakness that gets worse over time.
Based at Royal Preston Hospital, the Lancashire and South Cumbria MND care and Research Centre provides holistic and multidisciplinary care to patients with Motor Neurone Disease.
There is no cure for MND, but the Lancashire and South Cumbria MND care and Research Centre participates in research studies and clinical trials to look at treatments which can reduce the impact a diagnosis has on a person’s daily life, and though some people live with the condition for many years, many individuals only live for two to three years following symptom onset.
Professor Suresh Chhetri, Consultant Neurologist and Chief Investigator of the study said: “Motor Neurone Disease is a fatal illness that leads to progressive paralysis of muscles of speech, swallowing, movement and breathing.
Caring for a person with MND is an unremitting commitment and the impact of this ‘carer-burden’ often continues beyond the death of a patient, impacting the bereavement process.”
The Motor Neurone Disease Bereavement Support Study aims to explore the needs of bereaved informal caregivers of people with MND and identify gaps in bereavement service provision across Lancashire and South Cumbria. Deepsi Khatiwada, Research Nurse, was involved in writing up the study protocol and is the study co-investigator.
The study has already begun to recruit beavered informal caregivers to seek their views and experiences within existing support services.
Bereaved caregiver and retired GP, Dr Clive Barker, and has been involved closely with the project, said: “'For me, having some knowledge prepared me for helping to care for my mum, then losing her to MND, and supporting my dad.
“If other families have access to more support and information, given in a way that recognises their particular needs and wishes, it may make the journey easier for all concerned.”
Professor Chhetri said: “Bereavement is an extremely stressful event and affects various aspects of a person’s health and well-being.
The findings of this study will provide valuable information on opportunities, barriers and priorities for the provision of timely, integrated and high-quality local MND bereavement support services.”
Lancashire Teaching Hospitals Charity works alongside a number of national charities to support the work of our clinical colleagues at the Trust and would like to develop relationships with more national charities. Clinical colleagues can contact us at info@lthcharity.org.uk to discuss further.
