VOL: 96, ISSUE: 49, PAGE NO: 6
Stephanie White, RN, OND, Cert Ed Health, is clinical liaison nurse, gastroenterology unit, Royal Victoria Infirmary, Newcastle upon Tyne
The past two decades have seen immense and innovative changes in hospital and home nutrition. The British Artificial Nutrition Survey collects data on every patient started on artificial enteral or parenteral nutrition. At the beginning of 1996, 3,255 patients were receiving gastrostomy feeds, but by the beginning of 1997 this figure had increased to 5,016.
The staff at Newcastle’s Royal Victoria Infirmary were aware of the increase in the requests for percutaneous endoscopic gastrostomy (PEG) devices and wanted to improve this service. So in 1996 a PEG advisory team was established. Previously, care following a PEG device had been haphazard and inconsistent, often resulting in crisis management, emergency calls and inappropriate hospital attendances with no specific follow-up arrangements. Therefore there has been considerable interest in this new approach, both from within the trust and outside.
Further support and discussion
The outpatient arena is ideal for the follow-up of many PEG patients, and other interested professionals have visited to observe our system. Discussion is generated by the patients themselves, their families, carers and other professionals, such as social workers.
Topics raised in clinic:
- What to do and who to call if there is an urgent problem;
- Going away on holiday, especially flying abroad; the provision of feeds in a foreign country; the use (or not) of tap water to flush the tube;
- Concern regarding the presence of genetically modified organisms (GMOs) in liquid commercial feeds. Use of GMOs have now been discontinued by the feed companies because of these concerns;
- Whether it is safe to put other liquids via a PEG tube - many patients enjoy coffee, beer or even champagne by this route (Diamond, 1999). This is an important factor affecting patients’ social lives.
Many patients need to discuss their feelings about the impact of a PEG device on body image. Showing people PEG tubes and allowing them to handle them before their decision can lessen the shock, but it can still cause some revulsion and horror for some patients, their partners and families.
There are concerns, particularly voiced by younger patients, about the impact on relationships; this has to be managed with sympathy and understanding. These worries are not only about the appearance of the tube but whether it will smell or leak. It is helpful, whenever possible, to allow people to choose the device they prefer (Chaplen, 1997).
We estimate that two-thirds of our PEG follow-up patients attend the outpatient clinic. Many are very keen to do so and may travel a considerable distance to attend. The remaining third are unable to do so. Some remain in hospital or are transferred to a rehabilitation unit or hospice care.
There are also those patients who are too unwell to attend an outpatient department and can be visited at a nursing home or in their own home. When the PEG team was set up we began to have requests for these patients to be visited by the clinical liaison nurse to give specific PEG advice and care.
These visits are carried out according to need, perhaps as a single urgent visit to prevent a crisis or to provide practical advice to a district nurse. Other patients are seen on a regular basis, providing essential backup for the district nurse, the GP and of course the patient and their family. Advice is given regarding care of the stoma, the use and care of the tube and the feeding regimen. As part of the multidisciplinary team, any problems can be communicated rapidly to and from the community dietitian, community speech therapist, district nurse and GP.
A significant number of tube changes are carried out in the community by the PEG nurse, usually in anticipation of need, but occasionally to avert a crisis.
Conclusions and recommendations
The liaison role of the PEG nurse ensures continuity of care from the multidisciplinary team and guarantees support and education of patients and carers, as demonstrated by audit. The PEG nurse is often the first point of contact at every stage.
As clinical liaison PEG nurse since the team was set up four years ago, I find it rewarding - supporting patients through the whole experience, and working with the multidisciplinary team to create ideal care for PEG patients. There is increasing demand for the service (75 PEG device placements were made in 1999, with an additional 104 replacement tubes), and the range of services we are able to provide continues to increase. To help meet this demand, the PEG nurse role is now full-time and the PEG clinic is now nurse-led. The doctor present in the clinic does not see every PEG patient; many are managed by the clinical liaison nurse, dietitian and speech and language therapist alone. Communication with GPs and other professionals is made by the clinical liaison nurse. This is a demonstration of autonomous practice, drawing on expert knowledge and experience.
The information in the British Artificial Nutrition Survey indicates that 10,762 patients in the UK are fed by gastrostomy. Other trusts are recommending the allocation of a specialist nurse for this role and particularly emphasise the importance of outpatient follow-up and the value of support in the community. This nursing role transcends hospital and community boundaries and has developed in response to the vast increase in demand. There are major implications for funding for this and similar posts that need to be addressed urgently.
The team’s performance and outpatients’ clinics were audited in 1999 with positive results.