Helping patients cope with a rare neurological condition

Two advanced nurse practitioners initiated and developed the world's first dedicated service to help patients affected by the rare condition neuromyelitis optica

One morning in 1999, Grace woke up with pain in her back. By 4pm that day she was unable to move from the neck down. She was diagnosed with transverse myelitis and spent ten months in hospital.

Four years later, she woke up one day unable to see out of her left eye.

The eye has never recovered, and she is now tetraplegic and requires full-time care.

Grace was affected by a neuromyelitis optica (NMO) spectrum disorder, a rare autoimmune condition affecting about 700 people in the UK (see box).

Raising the profile

Despite the devastating disability it could cause, very little information was available at that time about NMO. Not only was there no treatment, there was little awareness of the condition among healthcare professionals and no support services for patients.

In 2010 NMO advanced nurse practitioners Kerry Mutch and Rosie Everett initiated and developed the world's first dedicated NMO nursing service.

Their proactive approach has spearheaded a nationwide collaboration to raise the profile of NMO, and supported research to learn more about the condition and its impact. The service has significantly improved the patient experience and, crucially, reduced the number of relapses among patients.

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The service, funded by NHS England’s highly specialised services unit, is located in the Walton Centre NHS Foundation Trust, Liverpool, and Oxford University Hospitals NHS Foundation Trust. It was a finalist in the Leadership category of the RCNi Nurse Awards 2017.

‘If we can pick up at the first attack, and use immunosuppressants to prevent further attacks, the prognosis is much, much better’

Advanced nurse practitioner Rosie Everett

Ms Mutch says: ‘Our vision is to provide all people affected by NMO with an excellent service, delivering high standards of care, treatment and education, based on research and delivered with care, dignity and compassion.
 
‘We coordinate primary and secondary care, including sharing specialist clinical experience with local healthcare professionals to ensure the patient receives a smooth pathway of care close to home, enhancing their health, well-being and quality of life.’

Needs and preferences

The service is adapted to meet the needs and preferences identified by patients, and Ms Mutch is proud that it is ‘extremely patient-focused’.

NMO was initially seen as a severe category of multiple sclerosis (MS) that involved the eyes, but in 2005 an antibody was identified. ‘This has made a massive difference,’ says Ms Everett.

‘NMO is not a progressive condition like MS, and preventing relapses is crucial to improving outcomes. When it was treated as MS, some of the drugs made it worse, or patients were not treated and continued to have attacks,’ she says.

‘If we can pick up at the first attack, and use immunosuppressants to prevent further attacks, the prognosis is much, much better. That is why our service exists.’

On average, patients had one relapse a year before going to the NMO service, compared with one every four years afterwards. ‘NMO used to be horrendous,’ says Ms Everett. ‘It can still be nasty if a first attack leaves the patient disabled, but we are now seeing a real difference to patients.’

Ms Mutch explains: ‘Disability accrues with relapses. We make sure patients are assessed and screened for other potential causes, such as infection, and make sure they are treated quickly with steroids if they are having a relapse.’

A telephone helpline set up by the nurses – accessible Monday to Friday, 9am to 5pm – has seen a 250% increase in calls since its launch. About 60% of calls are complex, involving medication changes, symptom management or concerns about potential relapse.

‘The phone line is most important to patients,’ says Ms Everett. ‘Having people at the end of the phone who know the condition really well makes the patient feel less isolated.

Quick response

‘If a patient is having an attack, we can respond quickly. We have access to one of the doctors every day so can consult them when needed. We are very much working as a team,’ she adds.

Relapses can cause limb weakness, loss of vision, severe pain, spasms, and bladder and bowel issues. The nurses provide patients and their carers with an individualised package of care.

‘We involve patients with their treatment plans and decisions to empower them, and to give them a sense of control,’ says Ms Mutch. ‘This can include advice on diet and medications, and liaising with other health professionals, such as continence advisors, pain and spinal teams.

‘We also provide psychological support and advice to NMO patients, who are often treated with prednisolone for long periods. They fear another relapse and the potential disability it could cause, yet they dislike the side effects of steroids, which include weight gain and sleep or mood disturbance.’

‘Many aspects of holistic care are often not attended to in necessary detail in busy neurology clinics, and the NMO nurses have been able to help fill this gap’

Consultant neurologist Anu Jacob

Consultant neurologist Anu Jacob, UK NMO service lead, says the nurses’ service has improved care. ‘Patients with NMO can be made relapse-free with immunosuppressive medications. The nurses are available through a telephone helpline to discuss any issue, particularly worries about new relapses,’ he says.

‘But many aspects of holistic care are often not attended to in necessary detail in busy neurology clinics, and the NMO nurses have been able to help fill this gap. This includes symptom management, such as pain, bladder and bowel issues, and social issues. Often a sympathetic listening ear does more for patient well-being than new medications.’

Supporting research is a key component of this service.

‘When patients are diagnosed, they will not have heard of NMO, neither will their GP,’ says Ms Everett. ‘So when they come to us and we know all about it and are researching it, patients are very reassured. They are usually keen to take part in research, so we can learn more about it, and researchers and lab staff attend patient days to feed back what they are learning.’

The nurses’ drive to raise awareness of NMO has seen them develop both the service and themselves. ‘We have taken on new skills, such as website design and maintenance, and we produce patient education booklets and leaflets,’ says Ms Mutch.

‘We have also presented research findings at international conferences, written for many publications, and made presentations to patient groups and health professionals,’ she adds.

As with all rare condition services, theirs has to be responsive, developing and growing as more is learned about NMO. The nurses identified a high incidence of bladder and bowel symptoms associated with the condition, so a urology nurse has now been employed at each centre.

‘Patient information needs updating regularly as researchers identify new variants,’ says Ms Everett.

Taking the service the patients

To ensure the service is accessible to as many people as possible, the nurses hold regional events to support patients closer to home, and give them the opportunity to network and discover local services.

They are also moving outreach clinics closer to patients’ homes, recently holding them at Great Ormond Street Hospital in London, and in Southampton, Gloucester, Plymouth and Haywards Heath in Sussex.

Ms Everett says: ‘Meeting up with people you have spoken to on the phone is important, as they will have more confidence when they phone you again.’

‘The relationship with patients is the most important thing’

It is this patient relationship that makes the job so rewarding, she adds.

Diagnosis is a very scary and daunting time for patients, so when they meet someone who does know about it, it helps reassure them.

‘We can tell them in clinic that within a year they will feel a lot better about it, that we are there for them in the meantime, and that they will then be telling us they are not thinking about it every day. We follow patients through and see them over time.

‘The relationship with patients is the most important thing. They really value that. We know them really well and can look after them and give them the best care.’

Elaine Cole is managing editor, Nursing Standard