Review of the Gluten-free Food Additional Pharmaceutical Service

3 Chapter 3: Survey Analysis

Three individual questionnaire surveys [Annexes 1-3] for the GFFS trial evaluation were distributed to the three stakeholder groups of patients, community pharmacists and GPs. A good response was provided from all three stakeholder groups. The complete analysis of the three surveys is available in Annex 6.

Summary

There were 1571 patient, 357 community pharmacy and 516 GP responses to the surveys with a geographical spread across all Health Boards in Scotland.

There is strong support from patients, community pharmacists and GPs for the GFFS. The vast majority like the service and support its continuation.

Both patients and community pharmacists noted that GFF orders had altered more frequently since the introduction of the GFFS. An association was found between the ease that patients can change their order and how often they do so.

The general impression from respondents across the three surveyed populations was the impact, effect and value of the annual coeliac pharmacy health check by was as yet unknown. The survey indicated that only 44% of respondents were offered an annual coeliac disease health check post service introduction similar to the 47% prior to the service introduction. Only 23% of respondents had received an annual pharmacy check.

• Patients raised some general issues and provided a range of practical suggestions for changes to the service. The majority of comments were in relation to administration processes, food choices, and the variation between Health Board formularies, unit allocation and cost of GFF.
• Community pharmacist respondents raised the need for more training and IT enhancements to improve the service. Specifically electronic prescribing would make the prescription process more effective and the PCR should interface with the pharmacy PMR.
• Other general comments queried why GFF was available on the NHS from a cost and equity perspective.

3.1 Analysis and Results of Patient Survey

A total of 1571 survey responses were obtained from the patient questionnaire with 95% of respondents using the new GFFS and nearly all previously receiving GFF prescriptions from their GP. There were responses from across all Health Boards but not evenly distributed. Twice the number of women as men responded and 72% of responses were from people aged 50 or over.

3.1.1 Patient Survey Main Results

There is strong support from patients for the Gluten-free Food Service (GFFS), with the vast majority liking the service and supporting its continuation.

There is an association between the ease that patients can change their order and how often they do so. In the majority of cases this has increased since the introduction of the GFFS.

Just under half of respondents had been offered a pharmacy coeliac disease health check which is similar to that offered by GPs prior to GFFS implementation. Less than one third of respondents had received a pharmacy check since starting the GFFS. A point to note is that this aspect of the service is only for adults.

3.1.2 Analysis of patients comments

The majority of the respondents were positive about the GFFS with comments and suggested improvements corresponding to main themes of:

• Administration Processes

Most respondents reported a good service which was generally easy to use, efficient and worthwhile plus they appreciated the service freed up GP time. Comments indicated patients felt they were in more control of their diet and the flexibility in ordering offered by pharmacies to try different GFF with reduced waste resulting. Main process negatives were a lack of online services, the need to write out an order each month and large bulky orders of GFF for pick up and storage. One other issue was the difficult process if wishing to change pharmacy.

• Health Board Formulary Choices

The limited range of food available was found to be an issue but there was no clear consensus on any particular GFFs with varied personal preferences expressed. The variation between number and choice of GFF on Health Board formularies was questioned. Several respondents also noted a lack of cakes and biscuits on some formularies. There was also a call for better nutritional information.

• Food Costs, Unit Allocation and Affordability

A number of respondents noted that receiving basic GFF food on prescription was important due to costs and the difficulties to stick to a diet if all food had to be purchased. Views were split on types of GFF that should be available.

There were also mixed views on the number of units allocated per person with some people considering them adequate, others excessive while others insufficient. There were also calls from a few for a voucher or a card for GFF that could be used at supermarkets instead of GFFS. This had been assessed in NHS Tayside before the initial concept of a GFF Service was developed but was found to be unworkable especially in rural areas.

There were several complaints about multiple pack sizes requiring orders of 8 loaves at a time and the resulting waste. Pack sizes are at the discretion of the manufacturers and many are now realising the burden these large packs have on patients and are moving to mixed packs.

3.2 Analysis and Results of Community Pharmacist Survey

The online survey comprised of 40 questions on the service covering: their experience; views on patients' experience; the impact of the service; views on the Adult Coeliac Disease Health Check and core factual information. There were 367 responses from 1250 community pharmacies sent the questionnaire.

3.2.1 Main Results

The main findings from the survey of community pharmacists were:

The majority of community pharmacists reported a positive experience with GFFS and supported its continuation. It is an easier and more efficient system.

Community pharmacists reported the service to patients had improved.

Almost half of the community pharmacists had carried out health checks and whilst this was beneficial in patient engagement, it was found both time consuming and could involve raising sensitive issues.

The PCR system appears not to operate as smoothly as it could.

Only a minority found the service had improved relations with the wider healthcare team.

Some respondents questioned whether the NHS should be giving food on prescription and whether it was a good use of time for a healthcare professional. Where this was accepted, there were some suggestions to issue vouchers that could be used at supermarkets instead.

3.3 Analysis and Results of GP Survey

The GP online questionnaire survey comprised of 19 closed questions sent to all GP practices across Scotland with 516 responses. Around one quarter of respondents gave additional comments in the free text box.

3.3.1 Main Results

The main findings from the survey of GPs were:

The majority of GPs who responded supported the GFFS service and found it to have benefits including a positive impact on their workload.

There was overwhelming support for the GFFS to continue.

Although most GPs agree with the statements on the positive impact of the service for patients, a minority responded "Don't Know".

Respondents generally were of the opinion that GFFS provided a better service and that patients had reported it supported self management.

Monitoring of GFF units was more effective, equitable and fair.

The majority of GPs did not know the impact, effect or value of the Adult Coeliac Disease Health Check. Further research was suggested to identify the impact and outcomes for patients of the service.

• Several respondents queried if GPs required being in the process at all. The prescribing of GFF could be undertaken by a dietitian once diagnosis confirmed.
• There were views expressed about whether GPs should be involved in prescribing food at all. The provision of GFF on prescription was raised in some instances where the view was the NHS should not be responsible for providing such food, and that this was ineffective use of funds.