Support Sharon and Cynthia’s Motor Neurone Disease campaign

Councillor Paul Millar said the situation was scandalous (Image: LDRS)

Few conditions are as devastating as Motor Neurone Disease (MND).

It is a fatal, rapidly progressing disease of the brain and central nervous system, which attacks the nerves that control movement so that muscles no longer work.

There is no cure for MND. While symptoms vary, over the course of their illness most people with MND will be trapped in a failing body, unable to move, talk, swallow, and ultimately breathe.

Speech is usually affected, and many people will lose the ability to speak entirely.

Some people with MND may also experience changes in thinking and behaviour, and 10-15 per cent will experience a rare form of dementia. MND kills a third of people within a year and more than half within two years of diagnosis, typically as a result of respiratory failure.

Awareness of living with motor neurone disease is growing nationally as a result of the inspirational campaign by former professional rugby player Rob Burrow.

BBC TV drama The Split has also delved into the cruelness of the condition.

In Exmouth, my colleague Cllr Tony Woodward and myself were approached earlier this year by two inspirational women, Sharon Darton, a constituent of Tony and mine, who has been living with MND for 12 years.

Sharon, who is active in the community as a part of Exmouth in Bloom, is unusual in that most people who are diagnosed with the condition die within two years.

Cynthia Hopkins is a support worker for the MND Association, and campaigner for people with MND, having lost her husband to the condition 30 years ago.

Cynthia and Sharon are anxious to raise awareness of the campaign by the MND Association, the ‘Act to Adapt’.

They shared with me the stress and mental health impact of the long wait for adaptations to the homes of people with MND.

Often, to improve the quality of life, it is necessary to apply for a DFG (disabled facilities grant) which is means tested and requires planning permission.

With a terminal illness, not just MND time is not on their side and the bureaucracy involved is astonishing.

We need to work with our Councils and lawmakers to try to cut through this red tape.

We need to remove the slow and costly means-tested financial assessments for the Disabilities Facilities Grant, we need to exempt home adaptations for those with a terminal illness from planning applications (this would require a change in the law), and we need to fast track the vital works themselves through councils - in some cases these works are taking many months, an issue exacerbated by the pandemic, by which time the person with motor neurone disease may have already died.

This situation needs to change.

We are, thankfully, as a society beginning to confront the heart-wrenchingly difficult issue of how our country treats those dying with terminal illnesses such as motor neurone disease.

The Assisted Dying Bill is currently making its way through the House of Lords.

I urge you to write to your MP as it is likely to be considered in the House of Commons.

I am personally in favour of Assisted Dying legislation in the UK, as are Sharon, Cynthia, Tony and many others I know.

But this is an extremely sensitive subject.

I had the honour of helping to steer through a sensitive piece of legislation in my early professional career, on opt-out law for organ donation.

There were safeguards in that law as there would have to be in any for assisted dying - there has to be regard and respect for people of faith who believe God gives and takes life, but there also has to be equal respect and regard for those who wish to choose when they die, who do not wish to lose dignity and be in awful pain as they deteriorate.