Motor Neurone Disease: New Preston study aims to boost support for bereaved families

The Lancashire Teaching Hospitals Charity has received funding to run a study at Lancashire Teaching Hospitals, undertaken in collaboration with the University of Central Lancashire.

Funding has come from the Motor Neurone Disease Association (MNDA) and the George Barton Motor Neurone Disease (Research) Trust, and it will look at the needs of bereaved informal caregivers and hopes to identify gaps in bereavement service provision across Lancashire and South Cumbria.

Whar is Motor Neurone Disease?

Motor neurone disease (MND) is an uncommon condition that progressively damages parts of the nervous system. This leads to muscle weakness, often with visible wasting.

There is no cure for MND and though some people live with the condition for many years, many individuals only live for two to three years following symptom onset.

In recent years, two late Preston footballers have bravely spoken about their lives with MND – George Melling and Lenny Johnrose.

So, what’s the study about?

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.

The study has already begun to recruit beavered informal caregivers to seek their views and experiences within existing support services.

Preparation

Bereaved caregiver and retired GP, Dr Clive Barker, who 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.”

Lancashire Teaching Hospitals Charity is looking to develop relationships with more national charities. Clinical colleagues can email: [email protected] to discuss further.