Pat Regional Care Adviser for the Motor Neurone Disease (MND) Association “As a Regional Care Adviser, I'm a source of support, information, education and advice for people who are living with Motor Neurone Disease (MND). I coordinate the work of the health and social care professionals involved in people's care.”

Pat works for the MND Association: this is a charity for people living with MND.

What's Motor Neurone Disease?

MND is a degenerative, terminal condition that affects the motor neurones of the brain and the spinal cord. This means that the muscles aren’t receiving messages from the brain. Degeneration of the motor neurones leads to weakness and wasting of muscles. This generally occurs in arms or legs first with some groups of muscles being affected more than others. Some people may develop weakness and wasting in the muscles supplying the face and throat; this causes problems with speech and difficulty chewing and swallowing.

MND is generally a steadily progressive disease. It's important to remember that the effects of MND vary from one person to another, as does the rate of progression. The disease is terminal, which means the patient will die from it.

What does your job as Regional Care Adviser involve?

My main role is to support anyone living with MND. However I have other roles too. One of my jobs is to educate medical professionals and social care professionals about MND. I also act as a catalyst to get things done for people living with MND, to get them the services that are available and the services that they choose.

As well as this I may act as an advocate for people whose communication has been affected by MND – I speak on their behalf. I'm also responsible for training volunteers, we call them Association Visitors. Another important part of my job is to influence the statutory services by sharing and encouraging best practice. I would like to think that I help people do their jobs better.

What are your working hours?

I officially work 37 hours. But this isn't a nine to five job as it can involve evenings and weekends. I like the flexibility of this and no two days are ever the same.

How do people get your help?

I'm usually one of the first people someone with a diagnosis of MND sees and sometimes even before they get a diagnosis if they think they may have MND. People get in touch with me through the internet or they may have rung the national helpline. Sometimes a neurologist may refer people to me before they can get an appointment with a medical professional. They also get in touch through the local branches of the MND Association.

Is there anything you don’t like about the job?

No, not really. At first I thought I wouldn’t enjoy the travelling as I have a large area to cover, but I enjoy that now too. It's difficult when people die but that's what happens with this disease. As long as I've supported the person with MND and their family to the best of my ability, I feel I've helped.

What are the challenges you face?

The main challenge is getting the statutory services to the people who need them when they need them. Because of the fairly rapid progression of the disease people need these services 'yesterday'. Sometimes they can get them too late. Because I work for the MND association I can try and plug the gaps by asking local branches to give their help too. But ideally I try to get the right services to the people living with MND when they need them.

This is rewarding too; to use all my skills and to have contact with people to help them cope with the difficulties. MND can affect people of all ages from all walks of life and one of the best things about this job is meeting all these people and their families.

How did you come to be doing the job?

I gained a Diploma in occupational therapy. The one thing I love about being an OT (occupational therapist) is the fact that throughout my career I've had many different jobs without having to change my career. There's so much you can do once you've qualified as an OT – it's a career for life. I've worked with children with learning disabilities, in a psychiatric day unit, with the elderly in hospital helping to get them back into their own homes. I've worked in Social Services and in that job I worked with every age group and people with a wide range of disabilities.

I came to work for the MND association because working as an OT over the years I've always held enormous respect for the courage of people who are living with MND. This is when quality of life, not quantity, becomes the principal consideration. I felt that I could offer my OT skills and experience to help achieve this.