Motor Neurone Disease
What is motor neurone disease?
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.
What services are available from Forest Holme?
People with MND will be under the care of a neurologist and a number of health care professionals e.g. physiotherapist, speech therapist
Forest Holme provides the following services for people with MND living in Poole and surrounding areas:
- MND Advanced healthcare practitioner co-ordinator – Annemieke Fox. Annemieke supports people with MND and their families from diagnosis onwards. She provides, information, symptom control advice and psychological support and helps to co-ordinate the other services you may need. She is the main point of contact for people with MND and their families. Mostly Annemieke supports people in their own homes but she can also support if admitted to a care home, hospital or Forest Holme. Bi-monthly multi-disciplinary clinics are held at Poole Hospital, which you will be invited to if appropriate.
- The MND co-ordinator post is kindly funded by the Forest Holme Hospice charity, in order to improve the care received by people living with MND. If you would like to donate to the charity, you can do so by clicking here or by phone: 01202 670644
- Palliative care consultant – Dr Beverley Lee. Dr Lee has a special interest in MND and attends the MDT clinics with Dr Hillier (neurologist) and Annemieke. She can provide specialist advice about complex symptom management and decision making.
- Community palliative care nurse specialists – this team of nurses work alongside Annemieke and Dr Lee to help manage complex symptoms and provide psychological support.
How do I access these services?
In most circumstances, the neurologist who gives you the diagnosis of MND will refer you to Dr Hillier and Annemieke. If for some reason this doesn’t happen, you can ask your neurologist or GP to refer to Dr Hillier. You can also contact Annemieke on her mobile 07387 041914 or email firstname.lastname@example.org for advice: (working days Monday – Wednesday). Referrals to the palliative care team can be made from there if needed.
Other sources of information
The MND Association have a huge amount of information and videos about MND for patients, families and professionals about MND in general and specific symptoms/issues. You can also find information about the services provided by the MND Association
There is an online forum supported by the MND Association where you can share experiences with other people with MND:
This is the local branch of the MND Association website which can tell you about support offered locally, including support meetings for people with MND and carers of people with MND.