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.

I think the healthcare professionals are really, really good at what they do and they’re understanding. I think for people that are trying to support people with MND, I think that it’s really, really difficult to be able to empathise, this is such a horrendous thing that no-one could know what it’s like I don’t think unless you’re actually going through it.

And I think sometimes you know, try not to be too dismissive when people say they don’t want support or they don’t need support, because I think that deep down a lot of people who initially are too proud to ask for support would really benefit from it if, somebody was kind of keeping on their case a little bit, not in an intrusive way, but just you know, it’s all about timing and you know, you might catch somebody who’s having a really bad day and they just don’t want to talk about it or whatever and you know, just not to close the door really to make sure that you know, that you keep actually trying to provide support.

But I know that in the real world you know, there aren’t enough professionals and there are too many who need their help. So it’s very, it’s very easy to cross someone off your list and think, “Oh you know, I’ll now go and help the people that do want it”, because I’ve been there, I’ve done that myself in my own work. But there really isn’t enough emotional support out there at all.

And the healthcare system, well it’s such a struggle to get things you know, things that people need like, voice recognition stuff, that takes ages, even you know, when people lose their speech I think that’s one of the hardest things that you can’t communicate, to lose the ability to communicate is so isolating and I think that that should be available, and I think that it should be talked about at the earliest possible opportunity because I know with my own experience that my family only got things when it was too late.

So you know, you have to wait for something to stop functioning before they address it. So there isn’t, they don’t anticipate what you’re going to need far enough in advance. So you know, and then, and then you know, you have to wait because there’s a waiting list, so don’t wait until somebody’s lost their speech to put them into the system. I think that’s, that’s the problem that you know, sometimes there’s, it’s too little too late.

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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.

So the one thing that I just did remember that I wish that I was pushed to do was with the speech and language therapist. They were all amazing but there was the type to speech app where it’s mentioned before you lose your voice. You can basically have, you say a word and then it gets connected on to the keypad, or you can use someone, i.e. me, I could’ve been, the speech person for my mum, where I would be saying words and then eventually she can just type and it would say a sentence out loud.
 
We quickly didn’t get that sorted and it was kind of mentioned and then, “Oh, yeah, we can do it on our next visit”, and then it got forgotten about. So towards the end of my mum’s life when her hands were going a little bit and the muscles were weakening it was hard for her to write or to text, that would’ve been really, really handy to have had that speech that she could say things immediately rather than being frustrated.
 
So I feel like that is the only thing that I wish was maybe pushed on us, because I didn’t really recognise, I didn’t know what was coming, I didn’t know how bad things were going to be and how hard communication would be. So I wish that we were just really, got explained, “This is really a good outcome, it’s a very helpful outcome towards the end. You might not feel it now but towards the end it is going to be very helpful to yourself, regarding communication”, so yeah.
 
That’s a good point. So you mean getting stuff set up so it’s ready when you need it and being told that, “You might need this so it’s best to do it now”, that kind of thing?
 
Absolutely, because although they tell you the life expectancy of MND, you don’t realise how quick things really do go downhill and you don’t have time sometimes to plan things; before you know it, a next symptom has happened and you have to focus more on that than the other stuff. So, actually getting stuff sorted immediately, because there’s no cure, I feel like we should be more aware of getting things done, the second that there is that official diagnosis.

 

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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.

I think pacing, timing, seeing that all family members obviously may come at this from a very different point of view. Being jargon free, I think that’s usually important because I think, you know, people supporting the carers, it’s quite a painful role to inhabit, isn’t it, for them. And sometimes, you know, you can hide behind professional jargon. Revisiting things, so lots of recap… giving something in written form, even if it be a link to a website or a handout or whatever, so that people can revisit it. Asking questions that don’t need to be answered on the spot that you can go away and think about, and then ask those questions again in a slightly different format at a later stage in the disease or in the process.

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  • 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”.

Caregiving

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.

I think in terms of, if you’re going to be a carer for your loved one with MND, there definitely needs to be more support and maybe some kind of training, I don’t know. Because I know, for example, if my mum’s breathing went a bit funny, I would instantly call the ambulance, whereas they’d kind of say to us, “We’re happy to do the checks but actually there’s not much we can do, this is a progressive illness”. I think as much as I knew that deep down, I still had hope; I still thought both of my parents were going to come out at the end of this. So I think there’s just, that support, I think there’s actually quite a big gap of being checked up on.
 
I do feel in general there needs to be more people checking in. And we did have one young girl who was assigned to – I think she actually was possibly a uni student, and she was kind of in and out and I think eventually she went, we spoke to her for about a month and then she had to go back to uni and we didn’t hear from her. But she was meant to be our lady who stuck with us and gave us support, our support system I guess.
 
Then it wasn’t really, it was like one email, “How’s things going?” and then seven months later, “Hi, sorry, I’m not going to be around”, there’s no constant communication. My mum was having different symptoms monthly and where do I turn to? Google. I don’t really want to turn to Google to find out why my mum’s neck has dropped, why is her foot slipping, why is her jaw clenched together, what can I do to, to help all of this.
 
So it’s a hard one because I know that there’s obviously not enough maybe carers with MND experience, but I feel like there needs to be a lot more and I feel like maybe people need to want to actually be a carer for – because it’s a complex need so I can understand it’d probably be scary for some people. But there needs to be so much more support.
 
I’m grateful for the support I did have, and the consultants were amazing, they even cried to me because they couldn’t believe how lovely my mother was and that she was going to die, like what our family had been through. But for them to be like, “Oh, sorry, we didn’t hear from you, we thought everything was fine”, is that really good enough?

 

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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.