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The MS nurse: 25 years on

MS awareness week on 24-30 April marks the 25th anniversary of the launch of the multiple sclerosis specialist nurse role. Specialist nurses have made a huge difference to patients but now face tough challenges over caseloads and drug complexity.
Liz Watson

MS awareness week on 24-30 April marks the 25th anniversary of the launch of the multiple sclerosis specialist nurse role. Specialist nurses have made a huge difference to patients but now face tough challenges over caseloads and drug complexity

Emma Matthews became a multiple sclerosis (MS) specialist nurse after seeking a job that would let her build close relationships with patients and their families. Ms Matthews, who works at Northampton General Hospital four days a week, says working in partnership with patients over the past eight years to manage the progressive neurological condition has been incredibly satisfying.

'The people I see, I get to know properly,' says Ms Matthews, who was previously a ward sister. 'I see people from diagnosis, when they may be very traumatised, and see

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MS awareness week on 24-30 April marks the 25th anniversary of the launch of the multiple sclerosis specialist nurse role. Specialist nurses have made a huge difference to patients but now face tough challenges over caseloads and drug complexity


MS specialist nurse Liz Watson with a patient.
She has a caseload double the recommended number

Emma Matthews became a multiple sclerosis (MS) specialist nurse after seeking a job that would let her build close relationships with patients and their families. Ms Matthews, who works at Northampton General Hospital four days a week, says working in partnership with patients over the past eight years to manage the progressive neurological condition has been incredibly satisfying.

'The people I see, I get to know properly,' says Ms Matthews, who was previously a ward sister. 'I see people from diagnosis, when they may be very traumatised, and see them grow and manage their condition. We support them to continue with juggling work and family and just get back to normal life. It is just so satisfying to be able to really help them.'

This year's MS awareness week, 24-30 April, marks the 25th anniversary of the MS specialist nurse role. The workforce has grown from the three posts launched in 1993 to a current workforce of just over 240 whole time equivalent posts.

The number of MS nurse posts created in 1993.

During that time the specialist nurses have helped to significantly improve care for people with the condition and seen huge changes in the way MS is managed.

Complex and unpredictable

There are around 107,000 people in the UK with MS, which is two to three times more prevalent in women than men, according to the charity MS Trust. Rates are considerably higher in Scotland, especially in the far north, than elsewhere in the UK, although the reason for this is not known.

A University of Dundee study published in 2014 suggested that the number with the condition in the UK increases by around 2.4% per year, mainly due to people with MS living longer. There is also now a greater emphasis on early diagnosis, as there are more treatments available.

One of the early recruits to the MS nursing workforce in the mid 1990s, Megan Roberts, who is now the specialist nurse programme manager at MS Trust, says the specialist nurses have a varied and important role.

This includes providing education and support to patients and carers on managing the condition and related symptoms such as fatigue, continence and cognitive problems. They also initiate and monitor treatment, which is an increasingly complex area, and provide psychological support, particularly on coping with the unpredictable nature of the condition.

Coordinating care

Specialist nurses also coordinate patient care with other health professionals and help train other professionals such as GPs.

Over the past quarter of a century the job has changed significantly, Ms Roberts says. The biggest shift reported by nurses is the increasing amount of time it takes to deal with medication.

Although it is a sign of great progress that there are so many more effective disease-modifying drugs (DMDs), they are time-consuming for nurses as they need to be carefully managed.

64% 

of patients live in an area with a shortage of MS nurses.

'The treatment, choice and complexity of DMDs has grown a lot,' Ms Roberts says. 'I hear from MS nurses that helping people make the right choices, giving and monitoring drugs takes up a lot of their working time. So for people who aren't on DMDs, people with more advanced MS, they may not see nurses and neurologists, and their needs are great. Nurses are distressed by that and they find it very difficult to manage.'

Despite the number of MS specialist nurses having increased by 12% since 2014, an MS Trust report last year found that 64% of patients live in areas where there are not enough nurses to provide the care and support they need.

Around 68,000 patients live in areas where MS specialist nurses have caseloads in excess of the charity’s sustainable caseload figure of 358 MS patients per nurse. Nearly a quarter of people with MS, more than 25,000 individuals, live in areas where caseloads are more than twice the sustainable level, according to a report published by the charity in September, MS Specialist Nursing in the UK 2016: Report on Progress Towards Equitable Provision.

Autonomy varies

Ms Matthews understands the pressure that many MS nurses are under. She and another part-time MS nurse have a combined caseload of around 1,500 patients, about 180 of whom are on DMDs. Research suggests that many more of their patients should be on DMDs, she says.

But work by MS Trust on caseloads has helped them successfully lobby for new nurses in Northampton, she says. After putting a business case to the trust, they have been told that three more MS nurses can be recruited over the next three years.

241 

whole time equivalent MS nurses in the UK.

'We provide a fantastic service under a huge amount of pressure,' she says. 'It is just amazing that we are able to recruit, and it will help enormously with many of our patients. We will get more patients on DMDs, and something I feel passionately about is that we are going to be able to provide a better service for patients who are not on DMDs.'

There is a great deal of variety in the level of autonomy for MS nurses around the country, as well as in the type of service they provide. Some nurses can make assessments and prescribe treatment, but this is not universal.

In Manchester, an innovative ‘hub and spoke’ model is used to bring specialist nurses closer to their patients. MS nurse consultant Karen Vernon has a team of seven MS nurses covering 4,500 patients across Greater Manchester and East Cheshire. The nurses run clinics in district general hospitals across the area and carry out home visits for those unable to travel. For more specialist care, patients attend Salford Royal Hospital.

Different conversations

'The nurses run clinics and we have a number of nurse prescribers,' Ms Vernon says. 'They can complete the patient's episode of care, particularly when it comes to relapse management.'

108,000 

people with MS in the UK.

The increasing expertise in the multidisciplinary team that cares for MS patients has led to major improvements, Ms Vernon says. ‘I can remember when there were no treatments at all,’ she says. ‘The conversation that we have with patients today is certainly very different. There is also an increased emphasis on self-management, and that has come through increased education for professionals and working in partnership with patients.’

She says patients value the continuity of care they get from their MS nurse, and the opportunity to discuss issues with them at different stages of the disease.

In the future, with the growing demand from increasing numbers of treatments on a small workforce of specialist staff, Ms Vernon says she expects to see changes in the MS team. For the first time her team is offering places to nursing students, to give the next generation a flavour of the specialist work they do.

'Team structures are changing,' she says. ‘When these roles were set up, the vast majority were band 7. Now there is a structure with band 7s, band 6s, band 5s and some band 4s, so that patients get access in a timely manner.'

Pilot project funds extra nurse to ease caseload 

The busy MS service in Bradford is about to gain another specialist nurse thanks to an MS Trust pilot project. The charity is funding training and pay for the first 15 months for new MS nurses in areas of greatest need.

Liz Watson, who started the MS service at St Luke's Hospital in Bradford eight years ago with the support of its consultant neurologist, cares for a caseload of around double the recommended number.

The extra nurse will make a huge difference to the service provided, especially for those whose disease is progressive and who currently do not receive treatment.

To be part of the pilot, the trust had to agree to fund the permanent post after the funding from the MS Trust runs out.

'We are aware that we have been providing a diluted service,' she says. 'I have to prioritise and triage who I see in clinics and call, and sometimes that means other patients don't receive a call back or are not seen as quickly as they should be. At the moment we have to prioritise those with relapsing-remitting disease who are relapsing and on DMDs, and we are pretty much at capacity from that cohort. I am really keen on developing our progressive patient clinics and greater outreach to patients.'

In the future, Ms Watson can see new pressures for all MS teams with the first treatments for the progressive form of the condition, which are expected to be available in the next year or two. 'While it is fantastic, we are waiting with bated breath as that is going to mean we need more capacity to be able to provide the service that they deserve,' she says.

 

Erin Dean is a freelance health journalist

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