More support for patients with Motor Neurone Disease in Calderdale

The role is being jointly funded by the Calderdale and Huddersfield NHS Charity and The Nick Smith Foundation with the 2-day per week role employed by the Calderdale and Huddersfield NHS Foundation Trust.

The co-ordinator will initially be in place for two years to assess the role’s impact. It aims to provide patients with a single point of contact, ensuring there is a joined-up approach to care plans and unlocking and signposting extra support for those diagnosed and their families.

Lucy Pittaway, Deputy Director of Operations of the Calderdale and Huddersfield NHS Foundation Trust, said: “This is a great opportunity for us to learn from best practise across the region and implement a co-ordinated, multidisciplinary approach to support patients diagnosed with MND.

“The aim is to show the quality benefits of this model and secure recurrent funding to embed this as a permanent service in the future for our community. I cannot thank The Nick Smith Foundation and our NHS Charity at Calderdale and Huddersfield NHS Foundation Trust enough for supporting this new role and service provision.”

An MND Services Steering Group will monitor the impact of the role. It will meet every quarter with the MND Co-ordinator and will include a representative of The Nick Smith Foundation.

The Foundation was formed after Nick, from Halifax, died in December 2017 just 101 days after being diagnosed with Motor Neurone Disease. He had two young children and his family have been calling for the creation of a role like this after their experience showed a lack of co-ordination and care for those diagnosed with the terminal condition.

Rachel Smith, Nick’s wife and Trustee of the Nick Smith Foundation, said: “When Nick was diagnosed, having someone carrying out this role would have made a huge difference - someone who could co-ordinate what he needed to ensure he received the best care and what we needed as a family to ensure we had the best support.

“I am thrilled that the Foundation in his name is able to help fund this crucial new role and make a real difference to the lives of those who have Motor Neurone Disease. Thank you to everyone who has raised money for us to allow that to happen, and to the Calderdale and Huddersfield NHS Trust for having the vision to see the impact it will have.”

The role is being co-funded by the Calderdale and Huddersfield NHS Charity – the charitable arm of the NHS here. Funds raised are used to enhance services and facilities as well as purchasing additional equipment to optimise patient care.

Emma Kovaleski, Fundraising Manager for the Calderdale and Huddersfield NHS Charity, said: “Calderdale and Huddersfield NHS Charity exists to support and enhance patient care and the service we provide at Calderdale and Huddersfield NHS Foundation Trust, and through the generosity of our donors we are delighted to fund new services and support roles such as the MND Co-ordinator.

“It is really important that we embrace partnerships too and thank you to the Trustees at the Nick Smith Foundation for working in partnership with us on this.”