Southwark has become the first local authority in London to adopt a Charter to help residents with Motor Neurone Disease.
The MND Charter was agreed unanimously at a meeting of all councillors last week and sets out the care and support that people living with MND and their carers can expect from the Council.
It identifies five rights:
people with MND have the right to an early diagnosis and information
people with MND have the right to high quality care and treatments
people with MND have the right to be treated as individuals and with dignity and respect
people with MND have the right to maximise their quality of life
carers of people with MND have the right to be valued, respected, listened to and well supported
The Council will now promote the MND Charter and make it available to all councillors, council staff, partner organisations and health and social care professionals who deliver services for the council.
The disease is a progressive illness that attacks motor neurones in the brain and spinal cord. It attacks the nerves that control movement so that muscles refuse to work. It has a pronounced effect on the lives of sufferers who can experience difficulty with eating, drinking, moving, talking and even breathing.
Motor Neurone Disease can affect anyone and can be hard to detect and treat. According to the MND Association a person’s lifetime risk of developing MND is up to 1 in 300. It develops quickly and kills a third of people within a year and more than half within two years of diagnosis.
Southwark Liberal Democrat Leader, Councillor Anood Al-Samerai, said:
“I met recently with the daughter of someone who died of MND just a few months after being diagnosed. It was heart-breaking to hear her story and how the Council has failed up to now to respond fast enough to the developing needs of sufferers.
“Due to the disease’s progressive nature, a quick response to these symptoms is needed to preserve the quality of life of those living with MDN. In this resident’s case the Council’s response was too slow and it proved unable to keep up with their needs.
“I wanted the Council to do more to help and that’s why I tabled this motion for debate. Councillors heard some truly moving stories about what it’s like to live with MND and care for people with it.
“I was pleased that all the political parties agreed to adopt the MND the Charter. Councils have an important role to play in the treatment of the disease’s symptoms and in the wellbeing of residents who suffer from it.”