A specialist nurse for rare neurological conditions has been appointed, a year after the decision to axe the post was overturned.

In March 2015, Bedfordshire Clinical Commissioning Group withdrew planned funding for the new nurse. The Huntington’s Disease Association worked in partnership with the Motor Neurone Disease Association and other neurological organisations, taking our concerns to local politicians to fight for the post to be reinstated.

Zoe-Anne Gaymes

Photo via bedfordshire-news.co.uk

Working closely with these organisations has resulted in decision makers in Bedfordshire agreeing to fund a specialist nurse for people with Huntington’s disease and other rare and rapidly progressing neurological conditions.

Zoe-Anne Gaymes has been appointed to the role of Rare Neurological Conditions Clinical Nurse Specialist, which has been funded by the Motor Neurone Disease (MND) Association and Bedfordshire Clinical Commissioning Group.

The role will support people in their own homes, avoiding unnecessary hospital admissions. She also works with local healthcare professionals to improve their knowledge of rare and complex conditions such as motor neurone disease.

Zoe-Anne said: “I have worked with patients with rare neurological conditions for over nine years and I have worked in a long term neurological care centre. I know how specialist nurses are valuable in complex cases.

"It’s so good to be able to make a difference by supporting those in the Bedfordshire area, ensuring they have the best quality of care and support available to them. I feel very privileged to be able to do this role.” Previously people with rare neurological conditions in the area would have to see different healthcare professionals in different settings but Zoe-Anne’s appointment will now ensure a co-ordinated approach to care.

Helen Santini, Specialist HD Adviser with the Huntington’s Disease Association, said: “This post had been planned for a long time, and will make a huge difference to the lives of people living with Huntington’s disease and other rare conditions in Bedfordshire.

“All of these conditions are particularly complex. When you are living with the condition, the time when you are most at need is also the time when you have least energy or resources yourself to navigate the services. This post will enable care to become more coordinated, which will provide a better service and ultimately also lead to a more efficient use of NHS resources.”

People registered with a Bedfordshire GP can be referred to Zoe-Anne by their GP or other healthcare professional, or they can contact Zoe directly on 01767 642440.

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