The Implementation: getting started section of NG20 recognises that there is a lack of dietitians in the NHS nationally, and specifically a lack of dietitians who have a specialist interest in coeliac disease or gastroenterology which leads to variation in the provision of specialist dietetic advice and requests organisations to share innovative models of care for coeliac disease .
This example describes our service redesign to increase patient capacity within existing dietetic provision, whilst also aiming to improve service quality. The example is relevant both to the updated NICE guidance and the preceding guideline (CG86).
Aims and objectives
Our dietetic-led coeliac service was originally set up in 2003, consisting of 3 one-to-one clinic sessions seeing both newly diagnosed and review patients across 2 hospital sites, with opportunity for consultant liaison. Following publication of NICE guidance: Coeliac disease: Recognition and assessment of coeliac disease in 2009 (CG86) we saw diagnosis and referral rates rise significantly. Our aim was to re-design the service to provide an efficient, timely, expert led service for those with newly diagnosed and existing coeliac disease.
• To increase patient capacity and reduce waiting times for new patients within existing service funding, secondary to increased diagnosis rates following publication of NICE guidance CG86.
• To ensure patients obtained all relevant work-up and monitoring following diagnosis.
• To allow sufficient time to provide detailed and practical advice for patients newly diagnosed with coeliac disease.
• To provide individualised assessment and review of all patients following initial appointment.
• To act as an expert, local point-of contact for colleagues requiring further advice or information on the condition.
Reasons for implementing your project
Gloucestershire Hospitals Trust serves a population of approx 620,000. Current research indicates that 1 in 100 of the population has coeliac disease (though currently only roughly 1 in 4 of these are diagnosed); this equates to approx 1,500 known coeliac patients in our county. Following publication of NICE guidance CG86 in 2009, a large rise in diagnosis of coeliac disease and referral to our existing dietetic-led service was seen. This led to extensive waiting times for newly diagnosed patients, with a ‘knock on’ effect on follow-up review. No further funding was available for clinics to support the increases in referrals seen, so an alternative approach was required to increase service capacity.
This review of the service also provided us with an opportunity to improve service quality. New patient appointment times in existing clinics were only 30minutes in duration, insufficient to provide the detailed and extensive information required for a newly diagnosed patient. There was also scope to improve capacity and structure for review patients. It was felt that quality of service could be therefore also be improved by service redesign.
How did you implement the project
NICE guideline NG20 recommendation 1.6.3 states: A healthcare professional with a specialist knowledge of coeliac disease should tell people with a confirmed diagnosis of coeliac disease (and their family members or carers, where appropriate) about the importance of a gluten-free diet and give them information to help them follow it.
Following discussions with and the support of our Gastroenterologists, a 90-minute group education session for newly diagnosed patients was proposed to replace one of the existing 3 clinics. This enabled up to 12 newly diagnosed patients (with a partner/family member if wished) to be seen each month, an increase in capacity for new patients of 42% compared to our previous service set up. Ninety minutes would provide sufficient time to provide relevant and detailed information along with practical advice and discussion of topics to newly diagnosed patients at a more relaxed pace, including:
- an explanation of service provision in Gloucestershire and to ensure appropriate work-up had taken place;
- the condition itself,
- key aspects of dietary management including: a balanced gluten free diet; hidden sources of gluten; food labelling including legislation; cross-contamination; eating out and travelling;
- gluten free prescription foods and entitlement to this;
- long term healthy eating;
- Support organisations such as Coeliac UK
Locating appropriate space to run regular group education was initially challenging but after negotiation space was found. Group presentation style was adapted to reflect lack of IT/projector. Primary care services were informed of the change to service structure and a patient information leaflet introducing the service was designed to be sent out with the letter confirming coeliac diagnosis.
The one-to one clinics for reviews and individualised advice were also redesigned, allowing an increase in patient capacity for review of 38%. Patients were offered 2 review appointments’ after which they were discharged back to primary care for long-term monitoring, unless there were concerns regarding ongoing symptoms in the presence of a strict gluten free diet, or monitoring bloods showed anomalous results.
Time between referral and 1st appointment in group education was monitored and showed successful reduction, with the majority of patients being seen within 8 weeks, and many within 4 weeks of referral. This result has been sustained. Increases in capacity for both newly diagnosed and review patients have been shown above.
Feedback and evaluation of the group education sessions have shown an overwhelmingly positive response over the last 5 years. Specific feedback demonstrates that, in addition to becoming further informed about coeliac disease and gaining knowledge on the intricacies of its dietary management; the social and emotional benefits of shared experience and practical tips between group members are rated equally important. Coeliac disease is one of few conditions where sufferers are required to announce their condition in any social situation involving eating and this ‘unwanted visibility’ can present significant difficulty for some people. From feedback, the group environment has shown it can present a positive focus to the condition and its management and reduce isolation; acknowledging the social and psychological elements of managing the dietary restriction as part of daily life, along with sharing positive, practical tips in areas such as recipe adaptation and baking, along with restaurants and shops in the local area that offer good gluten-free service.
Direct quotes from group education evaluation forms:
- “Very interactive and informative – very worthwhile.”
- “It has made things clearer and I feel more confident to start.”
- “I’d recommend the group - by being with others in the same situation, knowing you’re not dealing with it on your own.”
- “I did quite a bit of research on the internet, but I found that the session with the dietitian gave me more of a clear understanding.”
- “I’d recommend the group because it was informative and very friendly.”
- “Really friendly relaxed atmosphere, interesting to listen to, very informative - thank you.”
One to one clinics continue to allow individualised review, a more structured nutritional assessment and provision of additional advice or support; while also providing an alternative option for newly diagnosed patients for which a group setting may be inappropriate.
Key learning points
For those with a confirmed diagnosis of coeliac disease, provision of a dietetic-led coeliac service with a mix of both group education and one-to-one appointments is a successful model of care.
Group education can be a successful, cost-effective (in terms of optimising capacity within service provision) and clinically efficient way of ensuring comprehensive provision of detailed information on the condition and its dietary management following diagnosis. The group environment also provides patients the opportunity of meeting others in a similar situation, reducing isolation and allows shared experience of practical tips and local information, which may help to improve adherence to the GF diet.
One-to-one appointments provide opportunity for individualised review, advice and nutritional assessment, also discussion of any other results and co-existing conditions that may require additional advice (e.g. diabetes mellitus, osteoporosis, lactose intolerance)
Practical considerations include:
- Confirmed support from Gastroenterology team(s) with a regular opportunity to discuss patient cases.
- Appropriate space and facilities to hold group education sessions
- Ensure a clear protocol for service with outcome measures that can be audited.
- Good communication with relevant agencies e.g primary care and other colleagues, local prescribing authority.