Review of the Gluten-free Food Additional Pharmaceutical Service

6 Chapter 6: Discussion

The review used a range of methods to engage stakeholders and provide sufficient opportunity to feed in comments and experiences of the GFFS. The effect was a good response from a wide range of stakeholders with the unanimous agreement that the GFFS trial should be continued and embedded in NHS services. There was also agreement that in general the service objectives set out largely had been achieved. Comments indicate that a degree of effort is still required for full achievement of some aims. Due to the short time since GFFS implementation, the short and long term value of the annual pharmacy coeliac disease health check would benefit from an assessment of its usefulness at a future date.

Experience of the Service

On average 90% of patients agreed that they liked the GFFS service although there was some variation (82%-100%) between Health Boards. Also 93% agreed that the GFF order was easy to place and 90% stated there was enough information provided on how to use the service.

"It is excellent and makes ordering food very easy without bothering the GP."

For 82% of community pharmacists the GFFS had been a positive experience and they agreed it was easy to implement and use. The additional work associated with the service was highlighted within the questionnaire response, stakeholder letters and meetings. The necessity of handwriting all the GFF prescriptions rather than using electronic technology was frustrating for the respondents. This also affected the accuracy of the data collected for payment verification including determining the number of people utilising the service.

From the GPs who responded 83% agreed that the service was easy to implement within their practice noting that over 10% of patients receiving GFF items on the NHS still have their GP writing the prescriptions. A proportion will be patients resident in care homes who are currently ineligible; a number will relate to rural location and for others preference to stay with their GP.

Impact of the Service

For 89% of patient respondents the impact of the service was an improved ease of ordering with 71% of patients acknowledging that they change their food orders more often. This was borne out by pharmacist responses and prescribing information indicating a 29% increase in the number of GFF prescribed items since implementation of the service while costs only risen by 4.6%.

There was agreement by 85% of community pharmacists who responded that the GFFS provided a better interaction with their patients and led to wider identification of healthcare issues. GPs also found that the service had a positive impact on their workload for this area and enabled them to spend time on other responsibilities better using their skills. This is illustrated in a number of quotes set out in the survey analysis [Annex 6] for example.

"This is one of the best patient care systems invented! Streamlines their gluten-prescription service, more efficient for patient & professionals. Allows GPs to get on with treating illness rather than 'conditions'."

There were also positive comments on the flexibility of the pharmacy service and the fact the pharmacy staff were around to provide advice. Disappointingly, in general the opinion was the new service had not yet led to improved communication with the wider healthcare team.

"Ability to use community Pharmacist is easier and less time consuming. It provides greater flexibility to allow me to try alternative products."

Both individuals and stakeholder organisations in general observed that the service supported self management. Due to the short time since introduction the evaluation cannot clearly state the size of contribution the national GFFS brings to improving patient quality of care.

Adult Coeliac Disease Health Check

Positive and negative preferences were expressed by patients and some organisations on the annual pharmacy health check. Questions were raised on its value, pharmacists' skills and community pharmacy as an appropriate venue particularly if bloods were to be taken, however, this was never an expectation within the service provision.

Prior to the GFFS service implementation however, only 47% of patients were offered an annual health check and 44% since implementation.

"The annual check the pharmacist provided was identical to the annual check my GP provides except that the GP also requests the bloods. It doesn't make sense for the pharmacist to complete 95% of the review, only for the GP to replicate it a week later."

There is no significant information on outcomes when GPs undertook the check. Patients did generally report the lack of an annual check being offered since GFFS implementation. Only 23% of respondents had received a check by a pharmacist. The survey also indicated that only 49% of respondents had undertaken the annual pharmacy health check. This aspect of the service requires future evaluation to assess the value.

One concern prior to GFFS implementation was the potential for increased number of investigation requests, however, stakeholders indicated that this had not materialised. Similarly, referrals to dietitians had not increased significantly. A few pharmacists did question the value of the health check, however, pharmacists in general found the adult coeliac health check a useful opportunity for positive patient engagement. The main issue was the time commitment to undertake the health check within a busy community pharmacy.

GP comments indicated a lack of knowledge on this part of the service and noted that receipt of a patient health check report from the community pharmacist would increase awareness. Already available within the NES training packs is a standard template for community pharmacists to send to GPs.

Given, the interest in this new development and concerns regarding implementation and perceived value, it would be beneficial to monitor the implementation of the annual health check and evaluate its worth in one to two years.

Service Processes

The process for an eligible patient to change from GP prescribing to the GFFS has been successful with 82% of GFF now prescribed by community pharmacy. The training and support including the NES resources to support the service and its processes were generally viewed positively. Going forward, ongoing training was considered required by 43% of pharmacist respondents with online training materials (68%) the favoured delivery method.

Although there were many positive comments that the GFFS was an easier to use and more flexible service, there were specific processes that caused issues for patients, GPs and pharmacists.

Community pharmacists highlighted the amount of time it took to prescribe a patient's GFF order and the issues with the PCR as neither interfaces with the PMR or is easy to use. Patients also commented on the time it took for them to complete the blank order form. A number of improvements were suggested including greater use of email and a pre-printed order form with GFF details including order codes already printed for patients to use. This pre-printed order form suggestion has already been taken up within some Health Boards. Another suggestion was a GFF online prescribing service which has already been developed in NHS Tayside with patients and pharmacists and could be rolled out to all Health Boards. Patients and the community pharmacies liked the simplicity of the online service, speed of creating an order, how GFF units were calculated and created a clear order form. Additionally some community pharmacies have accepted an emailed order which was also found beneficial. NES webinars have been developed to support community pharmacy and Health Boards with the online service.

A number of current pharmacy processes do require review and these include:

• The fixed monthly order cycle has been found too inflexible as necessitated patients having to plan orders for a month then collect and store bulky quantities of GFF plus issues for patients if going on holiday.
• Process when transferring between community pharmacies, this presently requires a GP appointment and a reauthorisation with sign up to a different pharmacy. In some instances, this process had resulted in time delays especially if moving GP and Health Board area. This also was a problem for students returning to their home from university for the summer or people working away from home for a couple of months. One solution provided was to mimic the process currently operating with the pharmacy minor ailment service when patients change between community pharmacies.
• Annual reauthorisation was also considered unnecessary as coeliac disease once diagnosed is a lifelong condition.

Gluten-free Food Choice

There were many comments on the range of GFF available and the variation in the number of GFF products across Scotland. A number of patients commented that receiving GFF on prescription was important due to the cost premium compared to general food as supported compliance with a GFF diet.

"So grateful for this service as our food is so expensive in the shops. Now I can have the basics on prescription and it allows me a bit more variety."

"This type of food is somewhat restricted - no biscuits or fruit loaf or cakes but I can understand the logistics must be pretty horrific. The choice is adequate and from a financial point of view it is great. I purchased GF Food until I was informed about GFFAPS and the savings are considerable."

For patients, availability and cost of GFF has improved significantly in the last decade with supermarkets now stocking a range of GFF. One area of improvement suggested by stakeholders was to improve nutritional information provided to patients on what general food groups were gluten-free e.g. rice, potatoes, corn, meat, cheese, vegetables and fruit etc.

The present NHS prescribing choices for patients are based on local Health Board formularies. These are created using as a baseline a nationally composed GFF prescribable list which contains all GFF products that are ACBS approved for prescribing. The intention of the constructed national list was to assist Health Boards, in their local formulary development reducing replication of work, with the outcome of a greater consistency in approach and content of local formularies. A comparison of Health Board formularies (Table 1) indicates a high variation in the number of GFF choices across the food categories available for patients. The degree of variation was a source of a large number of comments from patients, GPs and community pharmacists in terms of consistency of service and was likened to postcode prescribing. Many problems were described and anecdotally GPs in one Health Board cited that patients would ask for GFF prescription due to the narrow prescribing choices on the formulary. It is strongly recommended that there is greater alignment of Health Board formularies and for patient representation in formulary development. The formulary should also apply to all prescribers.

A large number of comments focused on patient and pharmacist issues with fresh GFF items e.g. fresh bread with large minimum order sizes, short expiry dates, delivery times and bulky. All of which are issues which can lead to high GFF waste. Pack sizes are at the discretion of the manufactures and working with suppliers was one suggestion. Already many manufacturers are realising the burden these large packs have on patients and are moving to mixed packs. Gluten-free food manufacturers that responded also provided some specific points that should be considered within the development of a Health Board formulary. There were many mirrored comments from patients and other stakeholders on the above including a method of comparing costs and GFF units.

Types of food categories prescribed were also a focus for comment from all stakeholders. Prescribing information indicates bread and pasta are the most often prescribed. The largest GFF category growth over the last two years was cereals although still a low prescribing volume. The percentage prescribing between the categories has not changed significantly since the implementation of GFFS except for cereals and crackers/crispbreads. Patient views were split on the types of food available with some happy with basics and others wanting biscuits and cakes available. Although half of the Health Boards chose not to have biscuits within their GFF formulary, biscuits constitute 6.5% of the GFF items prescribed a slight reduction from the previous year. It is worth noting that ACBS will now only approve items considered to be "dietary staples" which does not include biscuits or cakes.

Although not part of the review, there were a number of comments across various stakeholders on the fact that GFF was prescribable. Financial cost of prescribing which is £4.06m per annum and inequity of access were both cited. Specifically, observed was a lack of equity for other patient groups with long term conditions such as diabetes, allergies (e.g. nut, egg and lactose intolerant) particularly as GFF was increasingly available in supermarkets. The following quote illustrates many of the negative points made:

"The NHS should not be funding food for coeliacs. Other patients with allergies have to buy their own goods (e.g. lactose intolerant patients)…….If the NHS insists on paying for people's shopping, perhaps a more cost-effective solution would just be giving a voucher for a supermarket for gluten-free goods, with an annual check done in pharmacy…."

Service Developments

A number of service improvements and developments were mentioned by the stakeholders. Some are noted above which support streamlining of the existing service. GPs highlighted other areas particularly non drug prescribing to consider a similar type of service to improve patient access, skill utilisation, cost effectiveness and reduce GP workload. Dietitians and pharmacists were also interested in developing services for other prescribing within oral nutrition such as foods for special diets e.g. phenylketonuria (PKU) and low protein diets or patients requiring oral nutritional supplements.