23 December 2021 Care
A co-ordinator for motor neurone disease (MND) care in Calderdale and Huddersfield is to remain in place after the NHS Foundation Trust agreed to permanently extend a pilot scheme bringing together help and services for those diagnosed with the condition.
The two-year pilot role was inspired by two men who had MND and wanted to ensure their legacy would be more support for those diagnosed with the disease.
Created 18-months ago with funding from The Nick Smith Foundation and Calderdale and Huddersfield NHS Charity, and with the MND Association adding their support for the position earlier this year, the role has proved so successful it is now being made permanent.
The co-ordinator, who provides a single point of contact for people with MND, has ensured a joined-up approach to care plans and unlocked and signposted extra support for those diagnosed and their families.
The inspirations for the role were Nick Smith, from Halifax, and Michael Martin, from Holmfirth, who both died from MND.
Nick died in December 2017 at the age of 38 just 101 days after being diagnosed. He had two young children and the charity set up in his name called for the creation of the role to ensure there was more co-ordination of care.
Michael died in May 2021 after living with MND for nine years. He was an active member of the West Yorkshire Branch and, thanks to a generous legacy left to improve care for people with MND within West Yorkshire, the branch was able to offer further support to the role.
Michael’s wife, Jill Martin, said:
Speaking to others living with MND following Michael’s diagnosis in 2012, it was clear they had access to specialist clinics whereas there was a void in Huddersfield and Calderdale. He never saw the same person twice, leaving him feeling frustrated and unsupported. He was determined to start campaigning for a specialist co-ordinator in this area.
We were delighted that the post became reality, and fortunate enough to be invited to two virtual clinics before Michael died which had all his support specialists in one place – leaving him feeling very buoyed up by the experience, and rightly proud of the legacy.
I am delighted that this position has been made permanent and am certain that it will change the lives of those living with this dreadful condition, and those who care for them.
Sal Hastings, Service Development Manager for the MND Association said:
People with MND can often be in touch with up to 20 different health and social care professionals at any one time, which is why a co-ordinated multi-disciplinary approach is vital.
We are delighted the NHS Trust has recognised the effectiveness of the care co-ordinator role in Huddersfield and Calderdale and with their support, people affected by MND in these areas will continue to benefit from this essential service.
An MND Steering Group has been overseeing the co-ordinator role and supporting Beth Macdonald, who took up the position in September 2020 following a competitive recruitment process.
Andy Nelson, non-executive director of the Calderdale and Huddersfield NHS Trust, chairs the Group. He said:
People with MND can often be in touch with up to 20 different health and social care professionals at any one time, which is why a co-ordinated multi-disciplinary approach is vital.
We are delighted the NHS Trust has recognised the effectiveness of the care co-ordinator role in Huddersfield and Calderdale and with their support, people affected by MND in these areas will continue to benefit from this essential service.