World of Irish Nursing & Midwifery May 2019

IBD 47

Supporting role Inflammatory bowel disease (IBD) comprises two main conditions: ulcera- tive colitis and Crohn’s disease. These are acute and chronic inflammatory condi- tions affecting the gastrointestinal tract, of uncertain aetiology. They are non-gender specific and can occur at any age. requiring support and assistance in the management of their condition. medication when patients are feeling well is often an issue, therefore continued edu- cation and advice are necessary to ensure long-term usage for continued manage- ment of the condition. This is a significant part of the role of the IBD nurse. The role of a specialist nurse is key in the ongoing care and support of patients with IBD, writes Angela Mullen

In addition, I provide a telephone and email support service, giving advice and recommendations to facilitate patients in self-managing their symptoms. As a result we reduce unnecessary hospital visits and admissions. This advice and support is seen as a life-line for some patients, who in an acute phase are frightened to leave the security of their homes, for fear of having an ‘accident’. Talking to a nurse, who is a familiar face/voice, can be very reassuring for them during such difficult situations. In addition, the provision of rapid access to GI specialist clinics can often save valuable time and resources within the healthcare sector – for example attend- ing an already overcrowded emergency department – by providing appropriate patient-centred care. Education and self-management is key in attempting to manage and control this unpredictable and unsociable disease. As patients become more aware of their disease and its triggers, they can move forward and maintain regular and normal daily activities without fear or anxiety of their condition. Patients with IBD should be capable of carrying out and maintain- ing a normal existence, eg. attendance at work, travel, sports, school and college. As part of education and self-man- agement, my role also involves the encouragement of patients to ensure adherence to the accurate and most effec- tive use of their medication. We have very effective medical treatments in oral, rectal, intravenous (IV) and subcutaneous (SC) preparations, which if used correctly are hugely beneficial in the long term and avoid the repeated over use of short-term treatments, such as steroids. As with any chronic illness, taking

These medications are expensive and all are covered on the drugs payment scheme, currently at a cost of €124 monthly. However, as a chronic illness, IBD is not automatically covered under the medical card scheme or long term illness scheme. If IV therapy is required then an additional cost of €80 up to a maximum of €800 per annum government duty is a further cost to non-medical cards holders. As with any chronic relapsing condition that may begin in early life and require individuals to access healthcare repeat- edly over many years, IBD is multifactorial. Keeping patients well and out of hospital, encouraging them to maintain a normal lifestyle and stay healthy is my mantra. Currently, in Ireland, there are 23 IBD nurse specialists working in various cen- tres, supporting an estimated 40,000 patients, with headcount numbers well outside recommended international stand- ards. In the UK, for example the guidelines are to have one full-time clinical nurse spe- cialist per 666 patients (Crohn’s and Colitis UK Report 2017). The Irish Society for Colitis and Crohn’s Disease – – launched a ‘double up campaign’ in November 2017 to increase headcount and highlight the lack of IBD nurses available to maintain an acceptable standard and provision of care throughout the country. The current role of the IBD nurse specialist in Ireland is very valuable for patients and their ongoing care and support. Angela Mullen is an IBD nurse specialist at the Mater University Hospital, Dublin

There are approximately 40,000 people living with IBD in Ireland. Both diseases cause ulceration of the digestive tract. Crohn’s disease can affect all areas from the mouth to the rectum. Ulcerative colitis is restricted to the large intestine. IBD is an unpredictable disease, with currently no known cause or cure. Man- agement of the condition is through medication and lifestyle changes. The disease affects the ability of the diges- tive system to function properly. The most common symptoms include: per- sistent diarrhoea, vomiting, abdominal pain, cramping, bleeding, severe weight loss, chronic fatigue and malabsorption of essential nutrients. Onset triggers are well known: medica- tions, ie. non-steroidal anti-inflammatory drugs (NSAIDs), some antibiotics, stress and anxiety. At the time of a flare of their disease, patients need lots of support from their IBD healthcare team, in which the IBD nurse specialist plays a significant role. However, in times of remission or with symptoms under control, patients can experience extreme fatigue and still require support to maintain a good quality of life. As the IBD nurse specialist in the Mater University Hospital and with over 20 years’ GI experience, my role forms the main conduit for communication and support between the patient and the multidisci- plinary team. The role involves providing constant patient support. Regular weekly outpatient clinics are the main mechanism of keeping in touch with patients and those

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