Around 50 MPs were represented at the launch of 'Condemned To Silence', a report by the All-Party Parliamentary Group on Motor Neurone Disease, which I chair. The report looks into poor access for communication aids for those living with disease, those in attendance heard the shocking findings of the report which took evidence from nearly 1,700 people living with or affected by MND.
There are 5,000 people living with MND in the UK today. 30% will die within 12 months of diagnosis 80-95% will experience communication difficulties before they die. The NHS is failing to provide communication equipment to people with MND.
As Chair of the All Party Group I hosted the launch on Tuesday 27th January and then raised the issue with the Prime Minister at Prime Minister’s Questions the following day.
I described the report as demonstrating that "people with motor neurone disease are having grave problems accessing the funding that is available for communication support in England."
and asked the Prime Minister:
Madeleine Moon MP: "Will the Prime Minister meet with the Motor Neurone Disease Association to sort out why the delays are happening in NHS England, and will he agree to fund the communication support that the Association can provide - quickly and effectively - while the NHS gets its act in order, so that no one dies without being able to communicate their last thoughts to their loved ones?"
In response, the Prime Minister said:
Prime Minister: "First of all, let me commend the honourable Lady for the work she's doing, and others across this House, on motor neurone disease. Anyone who's known someone who's suffered from motor neurone disease, and I've known people who have suffered from it, knows it is the most appalling, debilitating condition, and it's very, very difficult for families to cope with, so I will certainly look at the report that she has produced, and make sure that the proper meetings are held with the Department of Health so that everything we can do to support these people, and as she says allow them to communicate with their families up until the last moment, can be done."
Chris James, Director of External Affairs said:
"It was a fantastic launch event with people living with MND having the chance to be heard both through the content of the report itself and in powerful speeches too.
"We were delighted to support Condemned to Silence and with the response at Westminster - with nearly 50 MPs represented.
"It is heartening that our persistent campaigning on behalf of people living with MND is paying off and to have had such a positive response from the Prime Minister is extremely encouraging. We look forward to working with the Department of Health to make sure that in the future people with MND will not die without a voice."
People with MND who have communication difficulties are not receiving the services to which they need. Although there are pockets of excellence, there were also areas where services were found to have let people down. The underlying causes of this variation differ somewhat between the nations and regions of the UK.
Despite technological change revolutionising the opportunities available to people with MND who lose their speech, many people with communication impairments are not benefitting from new technology.
People who are left without a voice have their wellbeing compromised. The impact of not being able to communicate is devastating for people with MND and those around them. Some people with MND are dying while waiting for equipment they need, and sometimes even dying while waiting for the initial assessment.
This inquiry examined the current state of communication support for those affected by MND, comparing what is thought to be happening with what individuals are experiencing. 1,692 people – including healthcare professionals and people living with MND – responded to our survey and several attended sessions to give further evidence.
The NHS funds less than 50% of communication equipment used by people living with MND 39% wait more than 6 weeks to get the communication equipment they need 1 in 4 people with MND wait more than 6 weeks just for a specialist speech and language therapist appointment. 98% of professionals say the NHS should provide more communication support.
Sarah Ezekiel who is living with MND and made a keynote speech at the launch said: "Having the ability to communicate is a basic human right and I don’t think that there should be a postcode lottery for this essential equipment. I welcome the All Party Group report and hope it will lead to improved services for people with MND so that no one dies without a voice."
Sally Light, Chief Executive of the MND Association said:
"Condemned to Silence shows NHS has failed to implement a vital service that should have been in place more than a year ago; people with MND have been dying waiting for vital equipment, in awful circumstances.
"Ministers and the leadership of NHS England are guilty of complacency in not addressing this issue with more urgency, and blithely asserting that the system is up and running when it plainly isn't.
"The findings are shocking but no surprise to us because people with MND and healthcare professions tell us all the time the barriers they face in getting the right equipment quickly enough to support what should be a basic right – the right to human expression and communication."
"There should be a right to NHS funding for specialist comms aids in Wales and NI, as there is in England (even if it hasn’t been delivered properly)."