New guidance targets MND

Services for patients with motor neurone disease vary throughout the UK, with co-ordinated multidisciplinary care being the gold standard. New NICE guidance aims to improve care from diagnosis to end of life. Rachael Marsden, who played a part in developing the guidance, says nurses are uniquely placed to co-ordinate care.

Picture credit: Science Photo Library

Specialist nurses can be the linchpins of care for patients with motor neurone disease – that’s the clear message that came home to Rachael Marsden when she took part in developing new guidelines for the management of the disease.

‘Of all the professionals in the [guideline development] group, I was in a unique position,’ says Ms Marsden, an advanced nurse practitioner, co-ordinating a motor neurone disease (MND) care centre in Oxford. ‘I provide care for patients from the day of their diagnosis to talking to their families after they have died. Nurses see every single aspect of a person’s care.’

The new guidance covers the assessment and management of MND – a group of neurodegenerative diseases that are progressive, incurable and life-limiting. Most people will die within two to three years of developing symptoms, and only 25% will be alive after five years falling to 5-10% at ten years.

Published by the National Institute for Health and Care Excellence (NICE), the guidance aims to improve care from diagnosis, covering information and support; organising care; managing symptoms; and preparing for the end of life. As there is no cure, care focuses on maintaining functional ability, helping patients and their families to live as full a life as possible.


The chief issue for Ms Marsden was making sure the patient and their loved ones were at the heart of care, including decision making. ‘That’s first and foremost,’ she says. The guidance also emphasises the importance of multidisciplinary care.

Continuity of care is another major issue. NICE says the care of people with MND varies across the country. While some MND care centres provide co-ordinated multidisciplinary care, other patients are isolated.

Ms Marsden’s involvement in the guidelines has encouraged her to think about any shortcomings in the service she helps to provide. One issue is the lack of speech and language therapy. A pilot study is now under way, looking at increased integration.

Nationally, she is keen to see a change in the untimely discharge of patients. Patients should continue to be monitored as the disease progresses.

Ms Marsden has also been involved in drafting NICE quality standards, which are out for consultation. ‘This is now the gold standard,’ says Ms Marsden. ‘My hope is that in places where they’re not meeting these standards, they’ll use them to improve.’

Making sure that the messages are heard, locally and nationally, is now a major strand of the MND Association’s work, says policy manager John Kell. ‘The guideline has come about as a direct result of more than four years campaigning by our association and its supporters – and we’re very pleased with it.’

While representatives of the association were not involved in drafting the document, they submitted a lengthy response as part of the consultation, which included the views of patients. Significant changes include more of a focus on the community – as opposed to hospital – where most patients receive care. Another is a stronger emphasis on end of life discussions. ‘Professionals should be able to talk about it whenever the person raises it, and the conversation shouldn’t be shut down,’ says Mr Kell.

The association plays a crucial role in ensuring there are enough specialist MND nurses. ‘In the community, sometimes nurses aren’t there to begin with, so we’re pump-priming with our money,’ says Mr Kell. ‘We fund care centre co-ordinators. If it wasn’t for our funding, we know they’d be pulled onto general ward duties.’ Last year, the association led a successful campaign in Bedfordshire to reverse the decision of the local clinical commissioning group (CCG), which had withdrawn its plan to fund a specialist nurse post.

Making sure patients are at the heart of care is first and foremost

– Rachael Marsden

Looking ahead, the association’s measure of success will be patients’ satisfaction levels, revealed by surveys. The last published results were in 2013 when 950 patients took part. Participants called for improvements in areas ranging from family support to consistency of care. The results of the latest survey are currently being analysed.

Key information and recommendations

Be aware that the presentation of MND varies and may include muscle weakness, wasting, cramps and stiffness in the limbs, problems with speech or swallowing or, more rarely, breathing problems.

There may also be cognitive features, including behavioural changes, emotional lability and frontotemporal dementia. Onset is most common in those aged between 55 and 79.

If MND is suspected, patients should be referred without delay. Healthcare professionals in all settings should know about local arrangements.

Information and support should be provided for patients and their families throughout the diagnostic process. Once the patient is diagnosed, co-ordinated care should be provided using a clinic-based, specialist MND multidisciplinary team approach. The team should include health and social care practitioners with expertise in MND.

Read the guidance in full at www.nice.org.uk/guidance/ng42

Quick contact

Also welcoming the publication of the NICE guidelines is Anna Kent, a clinical specialist in neurological conditions at Bletchley Community Hospital in Milton Keynes. ‘It’s reassuring to see that the service we provide here is in line with these guidelines,’ she says.

Of a current caseload of about 160 patients, 24 have MND, with Ms Kent being the point of contact for a range of services, such as psychologists and dietitians. Patients are referred on diagnosis and she tries to make contact within a day. ‘It’s important to do it as quickly as possible. It can be isolating and frightening to be diagnosed with something so rare,’ she says. About 1,100 people develop MND each year in the UK, with up to 5,000 people affected at any one time.

She believes that her role makes a major difference to people’s lives. ‘They know where to go and are one step ahead of the game,’ says Ms Kent. ‘I had a patient recently who said, “Life without you would be very bleak”. I felt humbled by that. We can’t make people better, but we can make their journey more tolerable’.

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