Leeds champions voice of people with motor neurone disease

Leeds Health and Wellbeing Board has agreed to adopt the motor neurone disease (MND) Charter to confirm their support of local people living with this terminal disease and their carers.

MND is a fatal. The rapidly progressing disease can leave people locked in a failing body, unable to move, talk and eventually breathe. It kills around one in three people within a year of diagnosis, and over half within two years. Unfortunately there is no cure for little understood condition and many people with MND do not access the care and support they need. The MND Charter was launched to change this.

Councillor Rebecca Charlwood, chair of the Leeds Health and Wellbeing Board, said:

“I am delighted Leeds City Council and other health and care partners on the Health and Wellbeing Board have agreed to adopt the MND Charter. We know how important it is for people to be more aware of the needs of people with MND so those living with this devastating condition can maximise their quality of life and die with dignity.”

Dr Agam Jung , Consultant Neurologist at Leeds Teaching Hospitals Trust and Director of the Leeds MND Care Centre said:

“At Leeds MND Care Centre we aim to help patients, families and medical professionals understand MND and let them know about the services available here. We have a multidisciplinary team who can provide advice, support, education to patients, families and health and social care professionals dealing with MND.”

Chris James, Director of External Affairs for the MND Association said:

“The importance of the MND Charter is undeniable. We want everyone to be clear that access to the right care, in the right place, at the right time, as set out in our Charter, can transform lives.”

Notes for editors:

For further information about the MND charter please visit www.mndassociation.org/mndcharter

The MND Association was founded in 1979 by a group of volunteers with experience of living with or caring

for someone with MND.

More details of the Leeds MND centre are at: http://www.leedsth.nhs.uk/a-z-of-services/leeds-motor-neurone-disease-mnd-care-centre/

About motor neurone disease

• MND is a fatal, rapidly progressing disease that affects the brain and spinal cord.
• It attacks the nerves that control movement so muscles no longer work. MND does not usually affect the senses such as sight, sound, feeling etc.
• It can leave people locked in a failing body, unable to move, talk and eventually breathe.
• It affects people from all communities.
• Some people may experience changes in thinking and behaviour, with a proportion experiencing a rare form of dementia.
• It kills a third of people within a year and more than half within two years of diagnosis.
• A person’s lifetime risk of developing MND is up to 1 in 300.
• Six people per day are diagnosed with MND in the UK.
• It affects up to 5,000 adults in the UK at any one time.
• It kills six people per day in the UK, which is just under 2,200 per year.
• It has no cure.