Motor Neurone Disease sufferers call for improved services in Richmondshire

Former rugby league star Rob Burrows, who has MND. Photo: Rob Burrow's Fightback Fund.

Richmondshire District Council has unanimously agreed to transform its support for Motor Neurone Disease (MND) sufferers and their families after patients’ claimed few people in charge of key services in the area had any idea about the disease’s effects.

A full meeting of the authority saw councillors adopt a series of measures to ensure residents with MND received an early diagnosis and information, quality care and treatments and to be treated as individuals and with dignity and respect.

The meeting had heard moving testimony about the disease’s impacts from Richmond resident Chris Lamb, who spoke of about MND’s progressive impact on his body since he was diagnosed with it in October.

Mr Lamb told councillors that while the “death sentence” disease affects about one in 300 people, popular knowledge of MND was limited to what people knew about physicist Stephen Hawking or former Leeds Rhinos player Rob Burrows.

He said: “Until there is a cure for MND, what matters most is that people with MND receive the right care, in the right place, at the right time.”

Mr Lamb told the meeting many decisions about services used by people with MND, such as social care, housing adaptations and support for carers, were made by councils.

He said a greater understanding of the condition among councillors and council staff would ensure “we get the required attention quickly, including prompt neurological expertise and occupational therapy.

Mr Lamb added: “Our aim is that every time a councillor makes a decision, they think about the impact on people living with MND and their carers in the community.”

Mr Lamb was among a number of residents who brought concerns over the treatment of MND sufferers to the council.

Former Richmond tea rooms owner Cath Muir, of Eppleby, said in the eight years since she was diagnosed with MND she had concluded “few people within our local council or county council have any idea about MND and its effects on sufferers and their families” and lots of other local authorities “are doing better”.

Her husband, Ian, added it had become obvious that service provision needed to be planned well in advance as the existing system was “very inflexible and slow”.

Mr Muir said: “I am aware of more than one situation where the person had died before measures were put in place.”

Ahead of approving a notice of notion by Councillor Stuart Parsons to adopt the MND Charter and work to raise awareness of the disease, councillors agreed further efforts needed to be undertaken to improve services for sufferers.

Councillor Yvonne Peacock said in the past advancing help for people with MND had been set aside in favour of other more high-profile illnesses.

She added: “It is a devastating disease… and it hasn’t been recognised as much as it should have been.”