Gluten Free Pilot Scheme
Allerdale Pilot
Introduction
People with coeliac disease are intolerant to gluten found in wheat, barley and rye which are often used to make foods such as bread and pasta. The condition is caused by the body’s immune system attacking gluten in the digestive system and therefore it is not a food allergy. People with coeliac disease often have symptoms of diarrhoea, weight loss and stomach pain, although many patients do not present with such classic symptoms.
There is no cure for coeliac disease, but symptoms can be kept under control by eating a strict gluten free diet.Usually people with coeliac disease are given a prescription from their GP for the gluten free products which can be incorporated into their diet.
Aim
To improve access and convenience for patients by obtaining regular supplies of gluten free products directly from the community pharmacy without having to order a prescription via the doctors surgery.
Objectives
Apilot across Allerdale locality was conducted over a period of six months from Oct 2009- March 2010
- To improveconvenience and access to products suitable for patients needs
- To improve patient support and information from
- the participating community pharmacies,
- the community based expert patient coeliac support worker
- To ensure frequent review by referral to the dietetic service
Method
Allerdale commissioned a Coeliac Steering group consisting of GP locality lead, Allerdale Medicine Management Team, Public Health, Community Pharmacists, Dietitians and the local West Cumbria Coeliac UK group. They agreed that to improve access and convenience of gluten free products, GPsshould stop writing prescriptions and the patients could then order directly from community pharmacies. All paperwork developed would be reviewed by the group before being distributed to all Health Care Professionals involved.
Existing Coeliac patientsweretransferred to the Gluten Free scheme. Each patient received a pack1 containing details of the scheme from their GP surgery. Within the pack, a letter explained how the scheme would affect ordering gluten free products and the recommended number of units that the patient would be allowedin line with the NICE guidelines2.
New patients were referred into the scheme from theconsultant or community dietitian once they had a confirmed diagnosis.
Patients then register with their community pharmacy / dispensing doctor of choice and once registered the community pharmacy then inform the surgery, so patient’s records can be updated.
Selected products are allowable up to the number of unitswith the exception of biscuits, cakes etc. The community pharmacist keeps records for each patient, for audit proposes, and orders products usually on a monthly basis at the request of the patient.
Each item/product has a unit value attached. This was initially calculated on weight
i.e.One loaf of bread = one unit
500g flour = two units
Patients experiencing problems or requiring additional units are referred to the community dietitian or expert patient coeliac support worker for assessment.
As part of the service the pharmacist receives training and gives advice to the patient including details of the scheme and a patient guide.
The community pharmacist/dispensing doctor receives a £5 fee for each new patient registration and is reimbursed for the cost of the products supplied at invoice prices plus £2 per item to cover the dispensing fee and the existing practice allowance.
Initially the items/products carried one or two unit’sas above. This was confusing for patients so with consultation with the steering groupit was changed to one item being equivalent to one unit
i.e.One loaf of bread = One unit.
Community pharmacists/dispensing doctors send in their monthly claim form to NHS Cumbria for reimbursement of products and fees, including out of pocket expenses.
Four months into the pilot questionnaires were sent out to all members of the West Cumbria Coeliac Group and to all the Community Pharmacies in Allerdale Locality via the LPC (Local Pharmaceutical Society)
Results
The following practices across Allerdale Locality were involved
Community Pharmacy = 19
Dispensing Doctors = 3
GP surgery = 15
Pre schemeOct 2008 March 2009 / Oct 2009 March 2010
No of Coeliac Patients / 199 / 240
No of products ordered / 2455 / 1995
Cost of products / 36794 / 34707
6 month period
Other costs
Patient registration fees (one off fee £5 / patient)£980
Printing leaflets and posters£640+vat
Dispensing fees and out of pocket expenses where already being paid from global sum
Out of pocket expenses £ 945
Dispensing Fees£4347
Total cost of the 2009-2010 scheme over 6 months£40,979
Patient Survey
West Cumbria Coeliac Groupsent out 400 patient questionnaires regarding the scheme to assess what the patients felt about the new scheme. 53 have been returned and of these 30 patients have transferred to the new scheme within Allerdale.
83 % found collecting their gluten free products from the community pharmacy easier
60 %felt that the community pharmacist had helped them with the choice of products available
83%hoped the Allerdale pilot would continue
Patient comments
I find that I now have more control and choice and my pharmacist has commented on how much easier the scheme is to manage
This has actually encouraged me to think about and try new products. Previously I had a print out with each prescriptionand just put a tick next to the same items to request a repeat prescription.
The pharmacist used her own initiative of obtaining a similar product when product was no longer available.
Disappointed that some things which were on prescription are no longer included in the scheme especially biscuits
Dietitians Feedback
Good communication between the steering group members and local medicines managers has been key to the success of this pilot.
The team approach to design and implementation has ensured that all the health care professionals and the patient representative have given out a consistent message.
Community Pharmacy Survey
The LPC sent questionnaires to all community pharmacies within Allerdale locality.
17 replied out of 19.
No patient has refused to participate
Explanation of the scheme to the patients takes approx 10 minutes
Main problem of the scheme from a community pharmacy point to view was the pricing up of the products.
Overall the scheme is seen as a benefit by patients. They can change what they have more easily – but a very few are unhappy with the number of units they are allowed and/or not being allowed to have biscuits.
As patients found the unit value confusing the steering group changed the unit value to
One item = One unit.
90% of community pharmacists thought that patients benefited with this scheme
GP feedback
The medication screens are now clear, therefore medication is not lost in the sea of gluten free products.
The scheme has helped with patients that are over ordering to have a direct link into the dietician and the expert patient advisor.
Discussion
Patients access to products via community pharmacy rather that requesting aprescription has helped not only the patient in choice of products but is also convenient.
There was no easy way to avoid the need for pharmacies to price up the cost of the supplies they make under the scheme. If they obtain supplies direct from a gluten free food manufacturer, this is often billed to them via their wholesaler and theamount the wholesaler charges for this service varies considerably. The Community Pharmacy would almostcertainly be out of pocket if they didn’t declare the price they pay.
The extra time explaining the scheme to the patient and processing the paperwork for community pharmacists was more than compensated by the ease of avoiding supply problems by virtue of not having to contact the surgery to get the FP10 corrected.The ability to help and support the patient is paramount.
Patients are more aware of the number of units required to supplement a normal healthy balanced diet.
The expert patient advisor has been invaluablewhen visiting patients in their own homes to reassure / advise them on diet and lifestyle issues, product availability and cross contamination.
The results show that even with increased patient numbers the number of items ordered over a six month period has decreased and so has the cost. We are not sure if product prices have increased over the six month period but if they have, introducing this scheme has not affected the costs significantly.The group took the decision to exclude biscuits and cakes in line with the healthy eating campaigns being promoted by the community pharmacists
Over the six month period only threecomplaints werereceived regarding the exception of biscuits and cakes.
The scheme needs to be flexible depending on clinical need and dietetic assessment.
Conclusion
With more awareness regarding the symptoms of Coeliac disease, patients numbers are on the increase. Therefore empowering patients to take responsibility for their health, choice and how they request products is very positive. With the back up and support of the dietitians both in the community and hospital based3, community pharmacist plus the expert patient advisor this scheme should be launched Cumbria wide and looked at on a national basis. It is important to rationalise the range of products available on prescription in such a scheme; in particular biscuits which have no part in a healthy diet. This scheme also allows the pharmacist to prompt the patient to have an annual review with the GP.
Further work
Promote to other localities
Explore funding for expert patient advisor across the localities.
Promote an annual review flag system on all Coeliac patients notes to ensure regular reviews undertaken by a HCP.
Expert patient advisor and Medicine Management Project Facilitator to work with the local supermarkets to increase the range of products available on the shelves.
References
1
2Nice Coeliac disease May 2010-05-10
3 Dietetic Services
North Cumbria University Hospitals NHS Trust working in partnership
with NHS Cumbria
.
Medicines Management Team
April 2010 Page 1 of 16