Motor Neurone Disease (MND)

Coordination of care for MND

People living with MND often meet a wide range of different health and social care professionals involved in different aspects of their care, including neurologists, GPs, hospice staff, specialist nurses, palliative care nurses, district nurses, physiotherapists, occupational therapists, dietitians, home care workers and social workers. The need for good coordination and communication between these different staff, and between them and the patient, was a common concern. Where coordination and communication worked well, it could make a big difference to how confident people felt in managing their situation.

Several people identified one or two key professionals who had taken special responsibility for pulling services together on their behalf, and without whom they would have struggled. A range of staff, including specialist clinic nurses, occupational therapists, MND regional care development advisers, GPs, district nurses, physiotherapists and social workers had taken this role for different people, and in some cases the hospice had acted as the point of coordination. 

Support and coordination can vary across regions. The MND Association campaigns for equal and appropriate care for all people with MND in England, Wales and Northern Ireland. Scotland is supported by a different association called MND Scotland. A problem for many people was the fact that their care was divided between a specialist MND clinic, which might be some distance from home, and local services. Sometimes these different elements did not communicate properly. In the same way as good coordination gave people confidence and security, poor coordination of care could leave people feeling vulnerable and stressed. Several people said they themselves ended up becoming the main point of coordination, but coping with lack of information and bureaucratic rules could be a struggle. One woman said she felt she had to be “the go-between”. Some said they would like either a single point of contact or more sign-posting to help them through the maze of services and organisations. 

One woman said on one occasion she asked the dietitian and the speech therapist to come to the house together. “They thought that was extraordinary. They thought that was a good idea. They had never ever met each other, and they had never been asked to go to a meeting with a similar colleague.” Coordinated care has improved greatly since this interview and dietitian and speech therapists work much more closely these days.

Several people said the MND Association had stepped in to help when they encountered administrative problems or breakdowns in communication.

The MND Association has a network of specialist regional care development advisers (RCDAs), who work closely with local statutory services and community care providers to ensure effective support for people affected by MND. The RCDAs also manage a network of Association visitors who offer free and confidential emotional support and information to people affected by MND.

The MND Connect helpline service can also help to direct people affected by MND to relevant services and providers, including their own services and Association visitors. Find out more about MND Association support and services on their website.

One man also contacted the local PALS (Patient Advice and Liaison Service), which in his case helped get unwanted equipment moved within a few hours after he'd spent months trying to arrange collection.

Views were mixed on how often people wanted regular contact with their neurologist and other members of the specialist team, and how often they needed to be assessed in person. This was partly because it meant a long and tiring journey for some people; others said they were lucky to have home visits from the specialist team, or local outreach clinics so they had less far to travel. Some people also thought regular appointments were a waste of time and that there was little anyone could do to help. One man said, 

“I feel a bit choked about it from the point of view that I'm wasting their time….But [the neurologist] says I'm not wasting his time….I think he'd be better off seeing somebody younger.”

One man said his wife found the question, “How are you today?” from the neurologist insensitive because there was no chance she'd be feeling any better. He said, “In the end she didn't really want to see the consultant because there's no reason why you get MND and there is no cure.” For similar reasons, another woman (see Penny below) was upset by the term 'rehabilitation services', when there was no prospect of improvement.

Others felt reassured by regular visits and knowing that they could store up questions to ask different staff. One woman said,

“I'm lucky I'm under a specialist clinic and being seen by a professor who knows an awful lot about it and has a big team behind him. If I wasn't, I don't think I'd be as positive as I am….I like going there, because I feel it's very reassuring.”

Several people valued being able to contact staff informally between appointments. One man mentioned his specialist MND nurse "who I can pick up the phone to day and night." Another said, "My care manager and her assistant have been splendid whenever I've asked for anything or needed something. I just need to ring them up." One man's consultant had given him his personal phone number so if he wanted to ask questions or fix another appointment in between times he could just call.

One woman said it was difficult to pitch the amount of contact with different groups of staff at the right level.

The NICE guideline on motor neurone disease (NG42), from the National Institute of Health and Care Excellence, provides recommendations to health and social care professionals about how to provide appropriate care. These guidelines can help people with and affected by MND access suitable care. Resources to help people use the guideline, and make complaints about inadequate treatment and care, are available on the MND Association website, including an introductory video and a pocket booklet on what to expect from care with MND.

The MND Association website also provides information for professionals about MND.

See also 'Messages for professionals from people with MND'.

Last reviewed August 2017.
Last updated August 2017.


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