Local MP Justin Madders has pledged to try to assist people living with Motor Neurone Disease.
The MP for Ellesmere Port and Neston attended a meeting with some of the 30 families living with this incurable terminal disease on the Wirral peninsula at the Bridge Inn in Port Sunlight this week,
Mr Madders carefully listened to day-to-day problems experienced by people with the cruel illness and the many particular problems they face because of its frighteningly fast progress.
They highlighted how bureaucratic obstacles often mean that by the time money is provided for adaptations and the work carried out the needs of the person have changed dramatically.
And the fact that a government pledge to review the £30,000 cap on the Disabled Facilities Grant has been quietly shelved was also brought to Mr Madders’ attention. The limit has been in place since 2013 and inflation has massively eroded its value.
One of those present, Byron Schofield, whose partner Steve Kennett has the disease, also pointed out that once it has been diagnosed it only gets worse yet they have to reapply for the Personal Independence Payment and Blue Badge.
“It seems obvious to me that they should not have to reapply, it is an obvious thing for any government to look at, “ said Mr Madders.
The problems with obtaining care was another issue – shared by all living with disabilities – that was raised and Mr Madders said it was an issue the Labour Party was looking at and it would be a priority for a future government.
After the gathering, Mr Madders, who recently attended a meeting of the All-Party Parliamentary Group on MND, gave the assurance, “I will feed the information from today to our shadow groups, local councils and on some matters go directly to the relevant minister’