Meet The MND

Annemieke, who joined Forest Holme as a Motor Neurone Disease (MND) Advanced Healthcare Practitioner Co-Ordinator earlier this year, explains more about MND and how her new charity-funded role supports local people - and their families - with the disease from diagnosis onwards.

Can you explain what motor neurone disease is?

You have nerves in your brain and spinal cord that control how your muscles work. These are called motor neurones. MND is a disease that affects the motor neurones. With MND, motor neurones gradually stop telling your muscles how to move. When muscles no longer move, they become weak, which can also lead to stiffness and loss of muscle mass (wasting). MND is a life-shortening illness that can affect how you walk, talk, eat, drink and breathe. This is usually different for each individual. You may not get all of the symptoms and there is no set order in which they happen.

The disease will progress, which means your symptoms will get worse over time. For some people this can be rapid, for others it is slower. There is currently no cure for MND, but your doctors and other health and social care professionals can help you to manage symptoms and remain independent for as long as possible.

Tell us about your role as MND Advanced Healthcare Practioner Co-ordinator and how does it impact patient care?

This role is to support people with MND and their families from diagnosis onwards. It includes provision of information, symptom control advice and psychological support and co-ordination of the other services a person with MND may need. They are the main point of

contact for people with MND and their families. Mostly people are supported in their own homes but can also be supported if admitted to a care home, hospital or Forest Holme. The role also includes attending bi-monthly multi-disciplinary clinics with Dr Hiller (neurologist) and Dr Lee (palliative care consultant), and organising the bi-monthly multidisciplinary meetings where all professionals involved in supporting people with MND come together to ensure joined up care. The role also includes trying to improve the services people receive, and providing education to those who regularly care for people with MND e.g. care agencies, nursing homes

This is a brand new role - why is it now necessary to have a dedicated MND practitioner?

The existing teams already provide good care and support for people with MND but a lot of this has been based on good will and people going the extra mile. It has been clear for many years that a role like this was needed – in Bournemouth and Dorchester they have had people in this role for 4-5 years.

What did you do before you came to Forest Holme?

I qualified as a nurse in 1995 and started my career in cancer care/ palliative care, mostly at the Macmillan Unit in Christchurch. In 2008 I went to work as the regional adviser for the MND Association, and in 2013 I took up a role as neurology research nurse at Poole Hospital.

Finally, how are you finding working at Forest Holme and how has the pandemic affected your work?

The team at Forest Holme have been so welcoming, friendly and helpful, I feel like I have been part of the team for ages! When I first started the role I was unable to visit patients due to my own risk factors for Covid-19, but since having the vaccines, I have been seeing people at home and the main effect of the pandemic is all the PPE we have to wear, which I’m sure will be worse when (and if!) the warm weather finally arrives. It has obviously also had effects on people living with and affected by MND – when you are facing a shortened and limited life, they have been very frustrated not to be able to spend time with family and friends, do things they enjoy, or travel abroad. 9