Am I on my own?

The first thing you need to remember as someone with or caring for someone with MND is that you are not alone. There are lots of places to go for help, whether it’s medical expertise, just someone to talk to, or you need help with getting equipment or care services.

The NHS

The NHS has a range of services and health professionals to whom you may be referred, dependent on your personal needs. If at any point you think there’s a service that could be of help in improving your quality of life to which you have not been directed, you shouldn’t hesitate to speak to your GP or other healthcare provider about your options. These options include, but are not limited to:

  • Occupational Therapists – You may want to speak to an Occupational Therapist if you feel special equipment or adaptations within your home would benefit you and support you in living independently. There are a range of pieces of equipment available to help with your day to day life. These might be provided freely automatically, or in the case of more costly items may only be free or subsidised based on an assessment of your financial circumstances. Some other organisations such as the Motor Neurone Disease Association may also lend out equipment at no cost.
  • Physiotherapists – Advice and guidance regarding exercise plans tailored to your needs can be a valuable tool in combating and coping with decreased mobility.
  • Speech Therapists – Communication can become a problem, Speech Therapists will be able to advise on communication aids as well as helping with suggestions for when eating and drinking become difficult.
  • General Practitioner – Throughout your diagnosis and treatment your GP is there to support you and provide information on treatments and services. They can prescribe treatment themselves as well as referring you to specialists.
  • Community and District Nurses – Here you can find help with equipment and homecare, your GP can put you in touch with your District Nurse.
  • Dieticians – As well as advising on a diet to help prevent excessive weight loss, dieticians can also suggest options for foods which may be easier to swallow when this is an issue.
  • Social Services – Social Services will carry out an assessment to see what kind of care you need and to determine what financial contribution you may have to make towards this equipment and services based on your own resources.

Other Organisations

There are also other places you might go for help, here are a few though this list is by no means exhaustive:

  • The Motor Neurone Disease Association – The MNDA is set up to help those diagnosed with or caring for someone with MND. Their services include care advice and contacts, home visitors, equipment loan and financial services.
  • The Relatives and Residents’ Association – The R&RA can provide information and support for people who are in need of residential care, as well as their family and friends.
  • Winston’s Wish – Provide support and advice before, during and after bereavement in order to help bereaved children cope with the process and understand their loss through practical support and guidance.