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.

He has been impressed with the quality of the support network locally. He feels completely taken...

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Age at interview: 55

Sex: Male

Age at diagnosis: 51

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I was surprised to see how the different services were really cross-referring themselves. And, and there was a team of people really co-ordinating what was needed. And, and thanks to the information they gave me and the help they gave me I could have, let's say here in the flat for example - I could have my, my bed raised by the Social Services of [city] and which helped me to be able to transfer more easier to, easier to the wheelchair.

And because of my breathing aspect or issue with MND, I have from the DART team [Disabled Adults Resource Team] a raiser-recliner, which allows me to, to be in a position where I can really be sleeping in a better position at night, easing the, the breathing. In the toilet, the same, the DART team allowed me to have a toilet riser, which helps me of course to, to transfer when I want to go back from the toilet seat to the seat, the wheelchair. And they install as well a swivel seat on the bathroom, on the bath, which allows me to bath - not to bath, but to shower myself in a safer position. So all these different equipments, adaptations, things I have in the kitchen etc have been brought to my attention by people, physiotherapists, occupational therapists, who know about the, the condition then said, 'Okay, this exists, this exists. We can get it for you, we can get that.' So that's the way I felt completely in a network, completely taken care of. And that was a very comforting situation. It helps me in that case putting things in, even more in perspective. Because I felt that you're disabled doesn't mean the life stops. There are way, there are ways to work around it. And they help me in, in understanding that.

He is very pleased with the coordinated service provided by his nearest specialist MND centre. He...

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Age at interview: 57

Sex: Male

Age at diagnosis: 50

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The good thing about going to the neurologist is that there are, you're probably aware, a number of care centres around the country. I think it's up to 15 now, or will be soon, where MND patients are encouraged to go. And it basically provides a number of services under the one roof which you can visit, well, on the same day, for example occupational therapist, physiotherapist, nutritionist, and the neurologist themselves. And rather than go piecemeal to Social Services or wherever, you can go to the care centre and if you obviously let them know what your interests are or what help you're looking for then you can prime them as to what matters you want to discuss and what help you think you need. In some ways the care centre I go to, it's like an extra GP, if I've got a problem that something doesn't seem to be right.

I had something about six months ago and I just wondered at it, and so I sent an e-mail off to the neurologist. And he replied that to the best of his knowledge the symptoms I was showing was nothing to do with motor neurone disease and he suggested I went to my GP. And that all took only a few days and it was nice to get that sort of informal diagnosis - not diagnosis - yes, diagnosis. But in the end I didn't go to the GP because the symptoms disappeared and the neurologist had said that, 'If it goes away then don't worry about it.' Well, no - 'You can go and have a, if you want to be certain, you can go and have a, go to the GP and have some tests', and otherwise up to me whether I do anything about it or not. And I decided not and it hasn't happened since, so I'm unconcerned.

So having all the services together at one place is helpful. That's what you're saying?

Yes. So it's a deliberate policy on behalf of the MND Association to try and get these care centres around the country, as many as possible. Again in my case turning up at the neurologist once a year is not particularly beneficial to myself or to them, especially as I use e-mail to discuss things if I need to. I've also found the local Social Services, occupational therapist and physios to be very good and very responsive.

Staff involved in Mike's care work well together, and Gill keeps closely in touch with all of...

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Age at interview: 54

Sex: Male

Age at diagnosis: 52

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Yeah, what we, there are so many, this team that we've got, with all the people that are involved, it's just gotten bigger and bigger. You know, as different things have happened, other people have gotten involved with it. And I suppose our home really has become the hub, really, for people, you know, coming to see him. So we keep very close and very in touch with everybody that's in the team. And for example if, when Mike goes to have this, these tests with the respiratory guy in, in December, I'll immediately then send an email out to everybody to say, you know, 'This is what's happening and, you know, and I'll keep you posted' and whatever. So in between visits if there's anything that's specific that we think they need to know about that, what's going on with Mike, [Mike writing on whiteboard] they get an email or I'll give them a ring, and just keep everybody involved really in terms of what's, what's happening. Yeah. And what Mike's just written here is that they come here and meet here, you know. Like this, just this week we've had the dietitian and the speech and language therapist have come together. And they'll, they sometimes do a joint review, you know, because one impacts on the other, doesn't it?

And so they come and, come here and do a joint review with him. And we've had times where there's been, the physiotherapist has been here at the same time. So, so whatever, they come together. So, and they do communicate with each other out with, our home, you know. I know that they keep in touch and monitor, you know, what's going on. So they've been very positive, very good, the support that we've had locally for that.

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.

The district nurses and MND clinic coordinator help fight his corner. He's also spent a lot of...

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Age at interview: 58

Sex: Male

Age at diagnosis: 56

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The GP practice that, that, that I use is one which has I think maybe five partners for example and then other doctors as well. So there are quite a lot of people involved. And in general one can never be sure of seeing the same doctor twice. Generally speaking the, the communication between the doctors in this area is quite good. But recently we found it was a good move to try and involve one doctor more perhaps. And so now that I'm pretty much housebound, we try to arrange for the same doctor to come every now and again, just to sort of keep in touch with a home visit. And that system has worked reasonably well so far. We also have a, a district, a district nurse come in once a week from the same, they, they, they work from, out of the same practice. And that's been working very well. In fact it has to be said that the, the district nurses have been a tower of strength when it comes to fighting our corner with problems with the agency for example or with the local Social Services or whatever. They really have been very supportive. And I would encourage anybody to get them, get the district nurses to work for you.

On the whole the services have worked quite well. Where I have some reservations is in the communication between them and in making sure that we actually get what we need when we need it and so on. The district nurse has obviously been very important in bullying various other organisations. Likewise the local MND clinic coordinator at the local hospital has been extremely good at sort of fighting our corner for us and good at making suggestions and so on. That said, a huge amount of mental energy and emotional energy has been consumed at our end I think by making sure that we do get what we want. Things, it has to be said, have not worked very well in some respects, like the length of time it's taken to get particular care arrangements in place. Problems with the agency not always being able to provide staff, so you get a phone call perhaps rather late in the day saying, 'We can't provide anybody tonight' something like that. And making sure you get the right kind of staff. Where we've had some interesting experiences has been, been in, simply in the selection of staff. We've had people suggested to us as night sitters for example who from past experience we know sleep very heavily and have to be more or less kicked awake. So that's obviously not a very satisfactory arrangement for sort of night sitting, where, particularly if you, for any reason if I lose control of the sort of bell push for example, I wouldn't be able to wake them if I had any problems.

We also had somebody who, coming sort of, coming one night, partly to find out whether she could sleep through the night, so she was coming in effectively for assessment by us when we had another night sitter in, so this would be a, a new potential night sitter, went into complete panic mode and got very confused about where she was and so on. Which again would not have been a very satisfactory arrangement if I have any kind of emergency. So we've had to do quite a lot of rather careful vetting of, of staff and things like that.

Their MND Association Regional Care Development Adviser and their GP have been excellent in...

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Their MND Association Regional Care Development Adviser and their GP have been excellent in...

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Age at interview: 62

Sex: Female

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When the consultant diagnosed Bill, he handed him a piece of paper with the MND Regional Co-ordinator's details on and that was how we got booked into the MNDA [MND Association]. She was brilliant, she was absolutely brilliant. She came to visit us at home, she gave us a pack, she gave us the website, she got the paperwork sorted out for the blue badge and the DLA [Disability Living Allowance], she was absolutely superb, and she said, 'We've got this pack we send to GPs because they are not always, you know, they wouldn't often see a case like this, maybe never. We like them to know this stuff.' Of course what happened was our GP was on the point of retirement himself, and we discovered they'd divvied up his list and we were just put with somebody and weren't very happy in our position that we hadn't had a face-to-face, because there was a list of things of course that the co-ordinator had made us think about that we wanted to ask. So we did get a face-to-face with the new doctor. Very glad actually we're with the new doctor, because he's young, I don't think he has anybody else with this condition, he's keen to learn. He hit all the buttons that the co-ordinator said you must hit. He linked with the community physio, with the hospice, with the speech and language therapist, and so suddenly we had all of these things happening. It was amazing'

So all of this floods through the door, and within months, you know, I had two pages of contact numbers in my diary for everybody from OTs to physios, to the hospice people, to the speech and language, to the nutritionist, to - you name it, it was there' I think at first to have that huge support was just overwhelming actually, it was astonishing, astonishing. When the MND Co-ordinator came, she also linked me with somebody, one of their volunteers, a sort of befriender, if you like, someone who's gone through this themselves. And that was amazing as well because our visitor, we've struck up a friendship I think that will outlive our MND journey together and because not only we like each other, but she's very keen to call a spade a spade and that's very helpful to me.

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.

The MND specialist clinic feels well coordinated but not some other aspects of care. She'd like a...

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Age at interview: 59

Sex: Female

Age at diagnosis: 56

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Parts of it feels coordinated. When I go to the MND clinic, that feels coordinated. But because we live in a different part of the county from where the clinic is based, the rehabilitation section is not through the clinic, it's through this other, and that didn't seem coordinated, no. The bit with the GP and the district nurse, that seemed quite coordinated. My GP has been very good and very helpful and very supportive, and actually came out and had a discussion with my husband and myself and the local MND regional coordinator about what kind of support he should offer us, because I think I was his first patient with MND, which I suppose happens a lot of times.

But interestingly I think the coordination of the services has got a long way to go. My husband and I are currently involved with some meetings with the ambulance service that were set up by the regional coordinator in the district to try and ensure better provision for people with motor neurone disease. And there's the opportunity for ever such a lot more to happen than is currently happening. So fingers crossed that as these things are developing, then working together will actually help people with motor neurone disease. For instance they're hoping that if somebody rings 999 and you can get an emergency practitioner to come to the house, then a breathing problem can be sorted without being whisked off to hospital. Or if it's a difficulty with a PEG feeding tube, that can be sorted without being whisked off to hospital. And if that could happen, that would be amazing. So fingers crossed that that kind of coordination will improve. It's a bit hit and miss at the moment.

Are there any services that you think would have been good to have for people with MND that don't exist at the moment?

Well, I'm lucky with this massage. I think that I'm just fortunate in living near a hospice that actually provides this massage. But I think that something of that type of therapy is really very helpful. It makes you feel so much like an ordinary human being again by the time you come out, and it does help keep the stiffness at bay. My consultant told me that one of the advantages of MND is that there was no pain. He was wrong. There is pain involved as far as I'm concerned. And certainly other people I've spoken to have got pain. And, yes, a massage service would be great, I think. Again, the Macmillan nurses are lovely and very helpful, but they're still very geared towards cancer. And that's understandable, but my problems aren't the same as cancer patients. So perhaps widening the role or having people who are particularly for illnesses other than cancer would be helpful. I guess a one-stop person. If I've got a query, I sometimes think, 'Who do I go to for this?' If I had one person that I could say, 'Right, you're my point of contact and I'll ring you. And you can say, 'Go to your GP, go to your district nurse, go to whoever',' that would be helpful. I can get that kind of advice, but I sometimes have to ring around to find out who's going to give it to me. So a one-point contact would be really helpful, yes.

She needed clear information about who would be involved in her mother's care and how they all...

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She needed clear information about who would be involved in her mother's care and how they all...

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Age at interview: 40

Sex: Female

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I think this was one of the biggest problems I had, and in fact it goes right back to that very first meeting of the diagnosis, was actually knowing what each person who would be involved in Mum's healthcare did, what their remit was, how they related to each other, whether I could ring them, whether I had to actually go through somebody else to get hold of them. And I think it would've been terribly straightforward to have given me a little diagram that said, 'You're going to have an X, X and an X involved in your mother's healthcare. This is the department they work for, and this is how they relate to each other.' They could've said - actually they don't, at all. And, 'If you have any questions you can ring them yourself.' It took me a while and in the end I think people probably got very fed up with me because I did ring whenever I wanted something, and I struggled through all of that, and it really was a struggle.

The hospital and community services did not always communicate well. He spent a lot of time...

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Age at interview: 59

Sex: Male

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Difficulties with co-ordination, I think sometimes it was different professionals' inability to identify whose responsibility certain areas were. The GP saying, 'This should be done through the hospital'. The hospital saying 'This should be done through the GP or this should be done through the community or I haven't got this community individual yet'. But there were fortunately people who were prepared to pick up the phone and do things perhaps outside of the protocols.

I had difficulties in the early days when we had the oxygen concentrator and bottled oxygen here. There were times when we ran out of oxygen and I couldn't get oxygen cylinders. And I thought well I'll make one more call before I ring 999 and say, 'I need oxygen,' and that call once or twice was actually to the GP and the GP would and did always manage from somewhere to get the oxygen. Where it's, some of it's come from I do not know. In fact I've still got two oxygen bottles now and I can't return them from whence they came. One of them is full. Nobody seems to want to claim responsibility for them. But that can be typical in some instances.

When MNDA brought in the speech therapist, the hospital had attempted to do that but that line of communication, their, the people whom they communicated with didn't communicate on, there was a breakdown. It's not the hospital, within the community services. Their liaison point wasn't liaising with the right point allegedly and MNDA identified that problem and knew how to short-circuit it. When the occupational therapist, sorry when the speech therapist got involved he actually went and poked one or two people in occupational therapy.

But the communications within the community were bad. As I said we wanted community physiotherapy in August and got it in January a week or so before she died, far too long, far too long. And when the physiotherapist came to this door and got an explosion. She in actual fact had not been, had only just received a communication. It wasn't her fault. So what had happened in the pipeline and why the pipeline was so long and tortuous I do not know.

But the community, the co-ordination between community services is poor and who to talk to about community service is poor. The needs, the need is for a central co-ordinating clearing point. I need oxygen, I need to get some more tablets, I need something to lift the settee up so she can sit down. I need knives and forks with big handles on them. I need some incontinence pads. I want one telephone number, one point of contact and even if they are not the people responsible for doing or providing that service they are, should then be ones that know who is.

They should, I saw my job as taking care of Teresa's needs, being her representative, being her mouthpiece as well as her partner and everything else. I spent far too long as a medical secretary ringing people who didn't know what I was talking about. And saying, 'Well I've just spoken to so and so and they suggested that maybe you can help or suggest somebody that might be able to help.' Too many phone calls, e-mails whatever trying to find who was the right person, who owned the particular problem. Not helped by the fact that while Teresa's care was under one hospital it was actually being carried out and administered across four others, it didn't help. Didn't help at all.

They've had to coordinate everything themselves. It would have helped to have someone who knew...

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They've had to coordinate everything themselves. It would have helped to have someone who knew...

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Age at interview: 45

Sex: Male

Age at diagnosis: 42

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No, we had to handle it. That's what we found out. We have to handle it. People, different people give different amounts of advice. Some people are very helpful like the OT from the council, and some people appear to be very unhelpful like wheelchair services. But there's no plan whatever happens. You know, you're in charge of it basically. You can get advice off different people. You can go on the Internet and find things out. You can get in touch with different agencies but the person that coordinates it all is yourself. And we did say actually at the beginning what would be really great would be is if there was somebody whose job it was who knew all about motor neurone disease and they would come in and they'd be like your champion and they would, you know, get to know you and they'd, they'd find out you know, what was what and then they would help you to come up with plans and then they'd do it for you. You know, in consultation. But there is nobody like that, you have to do it yourself. That's what it feels like.

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.”

It seems pointless being assessed by the neurologist every six months. She may find clinic visits...

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Age at interview: 39

Sex: Female

Age at diagnosis: 38

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Every six months I'm assessed by my neurologist but to be honest with you I find it a pointless task really because if I was struggling with anything I would go and see them. So I just feel like I'm going in and it's sort of - I wish I had the vocabulary to explain myself a bit better. I feel that you're just going and they're paying lip service to you really because there is nothing they can do for you. There's nothing new on the markets that they can give you.

You go in there. They ask you how you're feeling. You tell them. They, they test, test your reflexes once again which you know are appalling and very brisk. And off you go again for another six months.

I think I would prefer it if I could just make an appointment to see them when I needed referral to a speech and language therapist or if I was finding difficulty with my breathing or I noticed something that I though I needed help with. Rather than me just turning up after six months and then them saying, 'Ok'. Test your reflexes and send you off home again [laugh].

Right. You feel it seems quite pointless?

At the moment. When I get worse I'm sure I'll find them invaluable. But only when I need all the other referrals and all the other things but at the moment I don't need it.

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.

At first Penny chose a regular phone call from the district nurses, rather than visits, but then...

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Age at interview: 59

Sex: Female

Age at diagnosis: 56

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When I was first diagnosed, it all came a bit fast and furious. Not from the hospital and the consultant, because I've seen him regularly every three months and that's fine. So I usually go in with a little list of things I want to talk about and that works well. But after the diagnosis, then I was referred to the district nurses, and they came. And that was okay to begin with. But really I didn't need regular visits from them, because at the time I didn't need extra support. So it then went down to a phone call. And now I think it's been reorganised, it's gone to nothing. So I've gone from one extreme to the other. I quite liked it when I used to have the regular phone call about every two months, because it meant I could tap into them again more easily. So I think that's gone downhill a bit, really, the district nurse system. The other thing was that I was referred to rehabilitation services. Now I got that letter probably about two months after diagnosis, and the word rehabilitation just made me flip. I was furious, I'm still angry now thinking about it. But I know it's the term that they use for accessing different services, but in my situation, rehabilitation was not the right word to use.

So I was referred to the local hospital to see the physio, the speech therapist and the occupational therapist. The speech therapist and the rehabilitation consultant were talking about me having a PEG because of my weight loss. I felt very strongly that I didn't want a PEG at this time, and fortunately my MND consultant agreed with me. I think I've been proven right, because three years later I've still not lost any more weight. So that was a good thing. And again the speech therapist, I can contact her when and if I need help.

The physiotherapist I used to go and see occasionally, because of her timetabling schedule. So really it wasn't an awful lot of help. And then she retired, and I don't think it's been replaced. So I don't go there any more. The OT at the time, it was funny because I'd been a volunteer in the Occupational Therapies department, so I went along there and had a chat and that was that. But more recently I have been back to the OT department, and there's a new OT there, and she's been very helpful. And I've been buying some, various dressing aids from her, and also starting to think about lifts and stairlifts. And that's put me back in contact with the local Social Services people, who are coming out this week, actually, to talk about stairlifts or through-the-floor lifts, because I'm finding the stairs hard now. So, yes, it's a bit hit and miss. It was a bit all too much to begin with, and now it's almost like, 'Where are they?' I think I've kind of sent them away a bit too far.

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.

Last reviewed August 2017.
Last updated August 2017.