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Putting MS patients back in control

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A government scheme has helped to create major opportunities for MS nurse specialists.

It has been four years since the Department of Health launched its Risk Sharing Scheme, which backs the prescribing of a particular medication - Disease Modified Therapies (DMTs) - to people with multiple sclerosis.

An important aspect of the scheme is to ensure people with MS most likely to benefit from DMTs receive the medication with minimal delay - and it is MS nurse specialists that play a key role in achieving this. As a consequence, there are now more specialist MS centres throughout the UK, with more healthcare professionals employed.

Since the launch of the scheme in April 2002, the number of MS nurse specialist posts has nearly doubled - there are now over 200 MS nurse specialists in the UK and the MS Trust believes that a further 100 are needed.

For Vicki Gutteridge the scheme provided a dream job opportunity. She grabbed the chance to become an MS specialist when a post became available at Southampton General Hospital in late 2002.

'At the time I was working as a neurology nurse, covering a spectrum of neurology conditions, but this job meant I could focus solely on MS and become an expert in a disease area that truly fascinated me,' she says.

After qualifying in the mid-1980s and working as a staff nurse in general medical wards, Vicki soon developed a particular interest in MS and undertook a neurosciences diploma course. Before becoming a neurology nurse, she worked as a senior staff nurse with a specialist interest in neurology and as a ward sister in an acute medical unit. She also trained as a counsellor and psychotherapist - skills she finds particularly useful in her current position.

'People with MS are a special group, because they are often young and display such courage and determination. Once they are diagnosed, there is only so much that neurologists can do for them, whereas there is plenty that nurses can do. That is why MS is an incredibly rich field for nursing. We can be involved in all aspects of disease management and help people to live normal, fulfilling lives,' enthuses Vicki.

The Risk Sharing Scheme has enabled many more patients in Southampton (and the UK) to receive DMTs. Vicki now has a team of four - a deputy and two locality-based nurses - but it took two years to clear the backlog of patients waiting for treatments. Some had waited years and there is only a limited window of opportunity for treatment before a person's MS can progress to the point where the drugs would no longer be of benefit. Vicki now runs a structured and efficient service for all new patients.

All advice on DMTs, as well as the processing of prescriptions, is provided by Vicki and her team. Patients choose their treatment. 'We have a unique system here in Southampton,' she explains. 'We present all the facts on the four treatment options - currently three types of interferon-beta (Avonex, Rebif and Betaferon) and glatiramer acetate (Copaxone) - so that patients can make informed decisions. The patients gain a sense of pride and control, and we have a very good adherence rate.'

The treatment information presented to patients must be comprehensive and objective, so it is critical that Vicki stays up to date with all treatment research. Most recently, evidence has highlighted the important effect of neutralising antibodies (NAbs) to interferon-beta, which can stop the drug from working in some patients.

A new set of guidelines from the European Federation of Neurological Societies recommend routine testing for NAbs in all patients having interferon-beta therapy. Like all other evidence, Vicki believes it is important to share this with patients. 'There is no doubt that NAbs are an issue and I think that testing should and will become standard. There is no point in continuing a treatment that is not helping.'

Treatment education may be a key part of Vicki's role but she must focus on all aspects of her patients' well-being. Some need support during periods of depression, others need help with fatigue management or lifestyle advice. Vicki actively encourages her patients to email or text her. She believes that MS patients often need hope and optimism, and good nursing support can help them to achieve this.

Vicki recalls: 'I recently saw a young man in clinic who has turned his life around. When I saw him two years ago, he was very low, anxious, terribly fatigued, and struggling with his job. We talked about every area of his life and the help that was available to him. He now has a new job, he is relaxed, happy and independent. Sometimes helping to give patients confidence can make all the difference to them.

'In some ways there are two strings to this job - the nursing side, but also the advising and coaching. There is enormous scope because we work with the patients to help them achieve their goals. This is what maintains the enthusiasm and motivation within the team. We all love working with our patients.'

Vicki is confident that the role of the MS nurse will continue to be valued and there are plenty of opportunities for people entering the field, in both secondary and primary care.

'We get many direct referrals from GPs and consultants, asking us for advice on the management of patients,' says Vicki. 'Our two locality nurses are owned by their PCTs, and within their roles they will increasingly become educationalists.

'This is an evolving role, and I foresee the potential to push the boundaries further still and become even more innovative, which is a very exciting prospect.'

How do I become an MS nurse specialist?

This could be for you if: you are interested in long-term conditions and used to working with people who are young as well as those who have end-of-life or palliative care needs

You need to be good at: communication and responding to acute sudden changes in patients' conditions

You need to have: some neurology background and counselling skills

You don't need to have: a degree - you can work towards this once in the post

Other similar jobs you could consider: epilepsy or Parkinson's disease nurse specialist

Where to find more information: The UK MS Specialist Nurses Association (www.ukmssna.org.uk)

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