Messages to healthcare professionals: Care and support for families living with MND

People we spoke to offered advice and messages to healthcare professionals and other organisations on support around living with MND, including suggestions around care, as well as support for carers. This section includes:

  • Living with MND
  • Caregiving

Living with MND

People living with MND described a variety of experiences of care and support. Individuals highlighted the need for support to be ongoing. Dani said, “I think the biggest thing is people just paying you attention and being in contact… It’s so important, just supporting people”.

People emphasised several key areas as important for good care. They valued:

  • Timely and well-coordinated care
  • Care from experienced and empathetic professionals, who bring warmth and humanity to their practice. As Adam points out, bedside manner can have “profound effects” on people.
  • Care which anticipates future needs and helps people prepare for the progression of the disease.

People recognised that it could be difficult for healthcare professionals to talk to patients and families about the progression of the disease. Individuals who felt this had been handled sensitively were grateful for this support. However, others felt this hadn’t happened. Harriet’s message to healthcare professionals was, “You’re giving devastating news, but don’t be afraid to give all the helpful stuff that comes with it. And caveat it, “…you might not need it, but there’s no harm in protecting yourself”.

Aids and adaptations can sometimes come “too late”. Karen encourages healthcare professionals to anticipate people’s needs and keep checking on those who say they don’t want support.

Looking back, Georgia Z wishes she’d been more prepared for how her mum’s symptoms would progress, particularly in terms of putting in place a speech aid.

Angi suggested having a list of aids and equipment that might be useful for people with MND, including whether they are available through the NHS or have to be purchased privately; giving this to families early on could avoid people avoid paying out for things they might be able to borrow instead.

Other points people felt were important for professionals working with those affected by MND to keep in mind included:

  • People living with MND are all affected differently. Healthcare professionals should emphasise to patients that they have a “unique disease”, which will progress in its own way, and work with them as individuals. Liz X emphasised, “We’re all different… assess everybody as an individual, not just the illness, because everybody needs different things”.
  • People don’t always take in information straight away, particularly when given a diagnosis of MND, which can be a shock. Recording consultations so people can listen back to absorb the information could be helpful.
  • People might need support and encouragement in sharing their diagnosis with family members.

Individual needs should guide communication; whilst some people might want to know everything, others prefer not to know too much. Niki also had advice on how best to communicate with families around inherited MND:

Niki highlights the need to consider the pacing and timing of information, using accessible language, and providing something in written format for people to revisit.

  • It is important to look at the “whole patient” and listen to how they are feeling. Alison was told “MND is not painful” when talking to her consultant about her pain, which made her feel dismissed and ignored.
  • People wanted healthcare professionals to remember that individuals with MND are more than their disease; they have lots to offer and should be treated with kindness and respect.
  • People emphasised being mindful of how individuals are feeling. People diagnosed with inherited MND may be upset or distressed to know their children and grandchildren could have an increased chance of developing the disease.
  • Bear in mind people’s wider family circumstances; as William points out, the home environment is a part of a person’s condition. Alison said, “it affects the whole family, it’s not just that person and the symptoms, the effects of MND that they’re coping with now. It’s their future, it’s their family’s future and they all need consideration”.


People also gave advice on how healthcare professionals and other organisations could better support those caring for a relative with MND, which can have an impact on the caregiver. Suggestions included:

  • It would be helpful to have training for family members in providing care to people with MND.
  • There is a need for accessible information for carers, including written information.
  • Some family carers would like to have better access to support groups to connect with people in a similar situation.
  • There needs to be better training for professional carers around MND. Although some people had positive experiences with professional carers, Georgia didn’t always feel comfortable leaving them alone with her mum, as they had no experience of the disease.
  • People would like healthcare professionals to maintain contact with families, even if families don’t get in touch. Having a specialist person allocated to each family could be helpful.

Georgia Z feels there should be ongoing and proactive support for family carers. She was given very little information on what to expect as her mum’s symptoms progressed.

The time after losing a family member can be difficult for carers and other relatives. Some people pointed out that there was “nothing” after the death of a loved one, either in terms of bereavement support, or simply checking in to express condolences and see how they were doing. For Sheenagh, it is important that support continues at this time.