MND patients benefit from new coordinated care across Bedfordshire

13 February 2012

People with motor neurone disease (MND) in Bedfordshire are already benefiting from more coordinated health and care services thanks to a new way of working launched recently by Sue Ryder-St John’s Hospice.

Sue Ryder’s MND coordinator is a brand new post being funded by the national charity, dedicated to providing support for the 55 MND sufferers who live in Bedfordshire. Karen Coupland took up her post in the autumn and is already making great strides in coordinating the county’s MND services.

Speaking on her new role, Karen Coupland, who is based at Sue Ryder-St John’s Hospice in Moggerhanger, said: “Motor neurone disease can be an intense illness requiring support and assessment from a number of different specialists. Special equipment from wheelchairs to bathing aids may also be required and installed. Sue Ryder’s new service coordinates all these requirements allowing the patient to exercise choice and ensuring that the care and support is totally focused to meet the personal needs of the individual.

“I assess new symptoms, provide advice or refer to appropriate health care professionals and will make sure other members of the Bedfordshire multidisciplinary team for MND are kept up-to-date.

“As well as coordinating resources and patient requirements, I’m also on hand to provide support and a listening ear. If, for example, someone misses an appointment, I will contact them to make sure they are okay and that their health and care needs are being met in the best possible way.”

Sarah Martin-Merchant, care centre manager at Sue Ryder-St John’s Hospice, said: “It’s an exciting service development for Sue Ryder and I’m delighted with the progress we are already making. Karen is doing a sterling job and our patients certainly seem to appreciate her work.”

Colin Knight, from Turvey in Bedfordshire, has lived with MND for nearly four years. He is a patient and user group representative and was involved in the recruitment of Sue Ryder’s MND coordinator. He said: “MND is such a lonely disease – even when you are surrounded with family and friends and doctors and nurses who are absolutely brilliant, you can still feel alone. Having someone on hand to talk to who really understands what the illness means and how it will develop and affect my life is really helpful.

“Sometimes you just want someone to be there who can advise on the practicalities of living with MND, who can understand what’s coming at me in the future and put forward my point of view on the care I want.

“When things aren’t going so well, it will be nice to have someone down to earth to rely on as a day-to-day support mechanism to talk about what’s happening to me and to give me the encouragement I need to keep living with a long-term illness.”

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