Better MS services Specialist MS nurses in Northern Ireland help patients to get the drugs they need, reports Jennifer Trueland allowed to access so much of our patients’ lives.’ Her role at Northern Ireland’s Southern Health and Social Care Trust includes running nurse-led clinics for people with MS – both general clinics and specific sessions for those on disease modifying therapies (DMTs). Ms Thompson and another nurse provide information and advice along the spectrum of MS for those diagnosed recently with the disease. She also assesses people in an inpatient and outpatient setting, as well as in their own homes, and provides educational sessions to other health professionals and patient groups. ‘The role can vary every day, but it involves supporting people who are affected by MS,’ she says. ‘We constantly re-prioritise our daily tasks according to patients’ needs.’ Ms Thompson’s patients are among the lucky ones. According to

Specialist nurse Heidi Thompson says her MS role allows her a great deal of autonomy


The lovely part of her job, says Heidi Thompson, is developing a rapport with patients and families. Having been a specialist multiple sclerosis (MS) nurse for 14 years, she is aware that her role makes a real difference to those she cares for. ‘Even if we do not change anything at an assessment, we are always available to offer support,’ she says. ‘We are in a privileged position in that we are

the MS Society, there is shocking variability in access to disease modifying drugs and to specialist MS nurses. Indeed, it appears that the two issues may be connected. ‘People who have a specialist MS nurse are more than twice as likely to be on treatment,’ says Nick Rijke, the society’s interim director of policy and research. ‘There are similar results for people who see a neurologist, and who feel they have enough information about medicines.’ According to an MS Society report published last year, six out of ten eligible people do not take disease modifying drugs, and whether

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someone is on treatment or not often depends on where they live. For example, people with MS in Northern Ireland are more than twice as likely to be taking a DMT than those in Wales. Only 30 per cent of patients in Wales are on drug treatment compared with 68 per cent in Northern Ireland, 36 per cent in Scotland and 40 per cent in England.

Access issues


Although DMTs will not cure MS, they can prevent relapses and delay disability. First licensed in the UK in 1995, they were made available on the NHS in 2002, in a risk sharing scheme that made the treatments cheaper to the NHS. Mr Rijke says the lack of access to drugs is partly due to cost, but also reflects staffing issues. There is a shortage of neurologists and MS specialist nurses, and a lack of knowledge among professionals – including some specialists. ‘There are some people who still do not believe that these drugs work,’ he says. He believes that MS specialist nurses are making a difference because they understand the various treatments. Northern Ireland has a higher than average incidence of MS, possibly due to a lack of vitamin D in the population – the disease is rare in countries with high levels of sunlight – and all patients with MS are reviewed twice a year by a neurologist Disease modifying therapies (DMTs) can prevent relapses in people with multiple sclerosis, but access to these drugs varies across the UK. Patients who have a specialist nurse are more than twice as likely to be prescribed DMTs. In Northern Ireland, where prescribing rates are high, an integrated healthcare system and nurse-led clinics deliver a high quality service. Author Jennifer Trueland is a freelance journalist


or specialist nurse. According to Ms Thompson, the province has an approximate prevalence of one person in 347 with MS, compared with one in 623 in the rest of the UK. She believes the country’s healthcare system, which encompasses health and social care, helps to provide a ‘seamless service’ for MS patients. ‘We work across the hospital and community setting, so we have an excellent relationship with all those involved in our patient’s care,’ she says. ‘We are able to refer patients to any member of the multidisciplinary team in any part of the province.’ The nurse-led clinics at the Southern trust provide ‘a great service for our patients’, says Ms Thompson. ‘As nurses, we are totally autonomous at this clinic. We run a “general” MS clinic and a DMT clinic. This enables us to assess and support people with various forms of the disease.’ People previously reviewed by a consultant neurologist are now attending the nurse-led clinic, she adds, freeing up capacity and ensuring rapid access. Patients on DMTs are monitored at the clinic and assessed once a year by their consultant. There is also a telephone line providing prompt advice and support. Following the introduction of a second MS nurse, the number of phone calls nearly doubled from 2,055 in 2009/10 to 4,033 in 2011/12. Ms Thompson admits there is a downside to her job. ‘MS can be a disabling condition, and sometimes no reversibility can be made to symptoms,’ she says. But the highs more than make up for the lows. ‘The highs from this job include seeing people who were diagnosed many years ago doing well and being able to manage their disease. I also really enjoy taking part in clinical trials to try to make more treatments available to all of those affected by MS’ NS See careers page 65

‘I CAN UNLOAD – I FEEL LUCKY TO HAVE THEM’ James West has MS. He calls specialist nurses his ‘comfort blanket’. ‘They have been the first line of contact for me on things like medication and mobility issues, but they also give really good emotional support,’ he says. ‘You can unload with someone who really knows the context of what you are going through.’ Mr West, a public relations consultant from Birmingham, has had multiple sclerosis for 15 years. In that time he has taken a number of disease modifying drugs, including beta interferon in the early days of his diagnosis. Some drugs used for MS can have challenging side-effects, and specialist nurses can help patients cope, he says. Recently, he started taking fingolimod, which aims to reduce relapse rates and disability progression. ‘It’s an interferon-type drug but it’s just one oral capsule per day,’ he explains, adding that he is tolerating it so far. ‘My neurologist is forward thinking – he believes that one relapse is one too many. He does not follow the old way of thinking, which was to wait and see what happens. That means I have had access to a range of treatments.’ Mr West has contact with four specialist MS nurses at the University Hospitals Birmingham NHS Foundation Trust (Queen Elizabeth Hospital). They provide support in areas including mental health, benefits and continence, he says, and are also a source of advice on medications for symptom management. ‘I also get urinary tract infections, and they can help with that.’ He takes baclofen to combat muscle stiffness, and he can discuss dosage with the nurses. ‘They are multitalented – I feel lucky to have them.’ march 5:: vol 28 no 27 :: 2014 25

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Better MS services.

Disease modifying therapies (DMYs) can prevent relapses in people with multiple sclerosis, but access to these drugs varies across the UK. Patients wh...
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