Motor Neurone Disease (MND)
Messages for professionals from people with MND
We asked people what their messages would be for health and social care professionals based on their experience of living with MND. Many such messages appear throughout the sections on this website, especially those on 'Information needs', 'Path to diagnosis', 'Speech and communication', 'Aids, equipment and adaptations' and 'Coordination of care'. Here we summarise some additional key points that people wanted to get across.
Given the rarity of MND, people appreciated that many professionals they met would not have much experience of the condition and might find it difficult to advise them. However, some said they felt unsupported emotionally when health professionals had limited knowledge of their condition. One person said she thought GPs were 'frightened of their lack of knowledge about motor neurone disease.' Several preferred it if staff were open about this at the outset. One man was pleased his GP said he'd never treated anyone with MND before, and told him to let him know if he heard or read anything he thought the GP ought to know. Several people appreciated it when staff worked together with patients and their families to learn more.
She'd rather professionals admitted knowing little about MND. She prefers it when staff work with...
Is there any way the doctors or any of the nurses communicated to you, have there been any good examples or any not so good examples?
I suppose good examples are people saying, 'We're here to help you in the way that you need.' I've appreciated that more than the example of, 'Well, you're a very thin person. Therefore I think you need a PEG.' And that was really quite frightening. Because although, yes, I am a very thin person and that is one of the troubles with MND, I actually, I've only lost about a stone from my original weight, and I was a pretty thin person beforehand. So, yes, it's, 'Let's work together about finding what solutions you need' as opposed to, 'This is what I think you need.' That works better for me. Whether it would work as well for everybody, I don't know. But it certainly works better for me that way, yes.
There's a lack of awareness about MND. Their GP learns from them as the experts, but it can be...
Several people found it hard when they were admitted to hospital and encountered staff who did not understand the condition very well and did not listen. People were also upset by inappropriate advice from some individual community staff such as occupational therapists, physiotherapists or dietitians who were not specialists. As one carer (Interview 41 - Roger and Teresa's story) said,
'There have been occasions where the professional might have been a little strident in dealing with people... when I've tried to intervene, taking the attitude, “I know what I'm doing”. And once or twice I've had to be less than gentle in the way I said, “I'm sorry, you do not know what you're doing. Please listen to me”.'
This was especially the case when the person had speech difficulties and staff were not familiar with how to communicate. (See also 'Speech and communication with MND'). Several made comments such as'
“You are 'compos mentis', you do understand and you are normal. All that's wrong is your voice.”
“People who can't move or communicate, you must assume that they are aware, even if they don't appear to be. You must assume that they can feel, even if you think they can't. And you must treat them as if they were your own new-born child, with as much care…It could be your daughter, your son, your wife, your husband.”
“Don't automatically think that because you can't speak properly that you must be senile.”
One woman's father had some bad experiences on a general neurological ward, including one nurse who seemed to be deliberately cruel. However, she singled out a particularly good example of care from an auxiliary nurse who was given extra time to be with him. As, she pointed out, a key problem in caring for people with speech difficulties is that they need more time to communicate than staff can afford.
An auxiliary nurse used her father as a case study for her NVQ and it was wonderful she had time...
The head man, whatever his correct title would be, would visit once a week - I think it was a Friday' And it struck me that the younger doctors underneath him, most of whom seemed to be women, were completely at sea. They were either nervous or just didn't know how to handle the situation. And so they didn't really visit him much, maybe.
I mean the communication aspect is to me the biggest thing about brain injured patients. I know there are a lot of difficulties caring for a person like that, but one of the most important things for that person is to be able to talk, however they do it. And if they need someone else to talk, to allow them to talk then I think perhaps, they perhaps need the opportunity to do that more often than they are getting. Otherwise whole days will go by when the only conversation has been, 'Do you want a drink?' I mean they may as well be in solitary confinement.
Another man was upset during a hospital stay for his diabetes that staff did not seem to understand MND well, and were inconsiderate.
When he was in hospital for his diabetes, staff didn't understand his medication, and kept taking...
When I was in [hospital treating his diabetes] it was nothing for a nurse to come and take my wheelchair to move another patient to another part of the hospital, and even though my wheelchair had labels all over it saying it was my property or in my care, they never once asked and there was arguments with staff over that. Not only with staff, it caused bad feeling between other patients and myself, because they thought I was being selfish. But it's not that, if my chair did not come back to me, then I had a bill of approximately '200 to pay, which is a lot of money for people in our circumstances. But you couldn't get the staff to understand that. And instead of saying, "Do you mind if we borrow your chair for an hour?" they'd take it. To me if they'd asked, I would have said yes, I would never say no. But they'd just take it without permission. That not only was, in my way of thinking, extremely rude, but also I thought it could be construed as theft. And one male nurse, I threatened him with police action unless he spoke to me first and stopped taking it out as and when he wanted to. It seemed easier to take a chair from the end of my bed, on the side of my bed, than getting one out of the room further down at the end of the ward. And I found it very, very annoying and upsetting because it was constant.
However, a few people were concerned that negative stories about care are much more likely to be told and remembered than positive stories, which means people may be frightened unnecessarily.
Her care on the neurological ward was excellent. She would like to hear more positive stories...
And you've had very positive communications with your GP.
Yes, yeah and with all, all, all healthcare professionals that have been related to, well or connected with I've had only positive aspects. There's nothing about it that I could say is negative at all.
When it came to staff who specialised in MND, many people were impressed with the quality and kindness of the care received. Inevitably there were also criticisms of the manner of some individuals, but most people recognised the difficulties of meeting every individual's preferences. The difficulty of getting the right balance for each person between being honest and realistic, but also being positive and reassuring, is explored especially in the sections on 'Immediate reactions to diagnosis' and 'Information needs'). One woman said, 'Be honest but tender', and a man suggested, 'Accept that people can be proud, and just be gentle with us.' Another woman said, 'Put yourselves in our shoes. Sometimes they deal with so many people and I feel we're just a name to them, because it was a devastating diagnosis for us.'
Most people were well aware that there is no immediate prospect of a cure, and that there was a limit to what professionals could do to help. They also understood that it was impossible to predict how their symptoms would progress and what their life expectancy would be. Several people suggested staff could share more openly with patients their uncertainty about how the condition would progress. Some said they could use the fact that progression is so varied and unpredictable as a positive way to offer hope. A few said they did not want to hear anything negative at all, including one man who said, “I do not wish to hear anything of the future. I don't want anything negative. I only want positive. If they have nothing else to say, better not say anything.” Others thought it was more a question of balancing the positive and the negative.
She suggests professionals need to give people 'good facts as well as bad facts', because people...
He feels staff should offer newly diagnosed people positive suggestions for what they can do to...
After diagnosis, doctors should be able to propose measures that the individual, the patient with the help of the medical profession and other bodies, can take to try to fight the illness, to give them something to do rather than sit at home and wait for death to come, or complete paralysis to occur. This could include suggestions for physiotherapy and appropriate massage, but not just for relaxation purposes. This kind of treatment should be taken in order to maintain muscle tone and, where possible, muscle strength. The only physiotherapy whatsoever suggested was by my local [Occupational Therapist in my borough]. There was no attempt to suggest any kind of physiotherapy in the hospital of neurology that I attended, or indeed any other kind of useful help in fighting my condition. I think physiotherapy is very important, as is better care and nursing assistance to allow people to have some modicum of movement in terms of getting out and about. A suitable diet encompassing the right kind of vitamins could also do much to maintain a patient's health. On another tack, potential hobbies or interests that a patient would get into should be explored. I have to repeat that only going to the shops once a week and watching television every day is not an option as it weakens the desire to live and thereby can speed up progress of the illness. I also think that better financial support to spouses and partners of people affected by MND would go a long way towards making more informed choices in their attempts to fight the illness or at least live with it.
What about information?
Information about various organisations is a must. And not just the MND Association, but various people you can contact and various websites you can look at. I think that any information about the various options open to sufferers, their relatives and carers by way of help with, and research into, this illness should be readily available. Reading up about MND, from symptoms suffered through remedial treatment to research into possible cures, should go a long way towards assisting those affected to push on with their daily lives with some hope for the future. As an example of positive thinking when viewing patients by the medical profession, potential eventual cures offered by the existence of stem cell research should not be ignored, but at the very least doctors should be able to say, 'Yes, this is currently being investigated. At the moment there is no cure, but we are hopeful.' There may be a reason why they don't say this. Somebody might sue a doctor for giving false hope, but at the end of the day these people must be given some way of coping with as much information as possible about being able to help themselves and not just left to their own devices. Being told to go home and live as normal life as possible is just not an option. Doctors have to be able to give a raft of hopeful hints of what can be done to tackle MND on a daily basis, for instance vitamins to strengthen the body, physiotherapy to strengthen the muscles, contact with an occupational therapist, taking part in research, etc.
Better investigations into the possible causes such as Lyme Disease and other ailments could also be pursued.
On the other hand, one man (see Interview 18 - Jim's story) felt staff sometimes tried to hold out hope when really there was none. He could see it was upsetting for them as well as the patient.
'I just felt that the doctor and the nurse, they were obviously upset as well and they obviously feel impotent because they can't do anything, really. Sometimes I sort of feel that they shield you a bit. They'll say things like, “Well, maybe it won't go up to your neck and your neck won't get weak.” And things like that, and I'm sort of thinking, “Of course it will”.'
Given the variable nature of the condition, another common thought was that people needed to be assessed and treated very much as individuals.
She advises people to 'live each day'. Professionals need to assess everyone as an individual and...
He felt the care package offered wasn't tailored to his daughter's needs as a young person. Paid...
A number of people felt that problems were often down to administrative mistakes or problems with the system rather than the fault of individual staff.
The professional staff are fantastic but they sometimes don't have the facilities to do their job...
She has been very pleased with all the health professionals. Sometimes they are let down by the...
But the healthcare professionals, they have their own problems. You know, they get different managers in, who mess up their schedules and things like that. And any problems have come from that, really, not them as people, but because they're being messed around by management, really. But I must say the girls who deal with me are very, very nice and I have no complaints about them at all. And I know that they get together, and one of them will say, 'Well, I'll talk to so-and-so about that for you and see if I can get, you know, if she can recommend anything'. So they're actually having a three-dimensional approach, really, to helping me. So I'm quite happy about that. I haven't had any time to use carers, really, Social Services carers or anything like that, so I can't really comment about them at the moment.
The MND Association website also provides information for professionals about MND. This includes a range of educational opportunities to health and social care professionals to enable them to develop their skills and expertise so they can make a difference to people affected by MND and improve their quality of life.
Last reviewed August 2017.
Last updated August 2017.