An update from our Harrogate hospice based Motor Neurone Disease support service

Throughout COVID-19, our Motor Neurone Disease (MND) Clinical Nurse Specialist Kate Adams has been busy finding new ways to support patients and their families.

Motor Neurone Disease is a progressive, terminal condition that affects the brain and nerves, and Kate is there to support people living with this illness and their families to lessen the impact on day-to-day life.

Kate works closely with the Hospice multidisciplinary team (MDT), and so can also call on their expertise to assist with emotional and physical aspects of the illness. Saint Michael’s has been supporting people living with MND and their families and friends in Harrogate and surrounding areas since 2011.

The service was created in response to the needs of people who came to the Hospice for help with symptoms and support and is part of our strategic aim to support more people living with illnesses other than cancer.

While many patients were happy initially to receive telephone support, Kate found not being able to see people and assess them in ‘person’ challenging. Through use of technology, via video conferencing platforms , the service has been able to keep in touch with patients and their families.

However, not all patients are able to communicate in this way. So for some people, a COVID-19 safe socially-distanced chat in a garden, with the use of appropriate PPE, has been an option.

The newly-launched NeuWS support group has understandably been put on hold, but some patients have expressed an interest in taking part in virtual group sessions, as the opportunity to talk to other people in a similar situation is important to them.

Similarly Kate has been investigating the possibility of a virtual support group for carers, to enable them to share experiences and feel less isolated.

Saint Michael’s also provides a special MND telephone support line, provided by the HOME Service, to answer general concerns and queries from patients about their condition, equipment and to arrange support from Kate.

Kate’s family has also welcomed a new addition during lockdown – a Border Collie puppy called Hubble – who is already a ‘virtual’ hit with some patients.

Inspired by her patients, Kate now hopes to be able to train her puppy as a ‘pets as therapy’ or PAT dog that, in the future, will be able to meet patients and families, to provide opportunities for relaxation, meaningful activity and promote communication.

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