Prescription restrictions - what we're doing to help you

changes to gluten-free prescribing

Since the summer of 2010 we have heard from Members and healthcare professionals about changes to glutenA protein that is found in the cereals wheat, barley and rye. -free prescribing in thier local area.  As the NHSNational Health Service looks to drive down costs across the board, a number of Primary Care Trusts (PCTs) have placed strict limits on what can be prescribed for patients with coeliac diseaseA condition where a person is unable to eat gluten as it makes their body attack itself. .  The main argument given by PCTs focuses on the cost of gluten-free foods on prescription to the NHS. 

In most areas, changes focus on:

• “luxury items” (sweet biscuits and cake mixes) being removed, often based on ‘Healthy Eating’ schemes
• specific products being taken off the list of available products i.e. fresh bread
• a new limit placed on the number of units allowed per month.

Coeliac UK’s position

Coeliac UK strongly believes that prescribing of gluten-free staple foods is an essential NHS service that should be available to all patients.

We feel that gluten-free food on prescription should stay within the NHS and are working hard to ensure that the view and needs of people with coeliac disease is represented.

Our postition calls for:

• staple foods such as breads (including fresh bread), pasta, flours, crackers and pizza bases listed by the ACBSThe Advisory Committee of Borderline Substances is responsible for deciding what products go onto the presciptions list.  to remain available and specialist breakfast cereals should be added
• cake mixes to no longer be available and sweet biscuits to only be considered in exceptional circumstance on clinical advice
• amounts recommended in the guidelines to be treated as the norm

We support choice in the prescribing of gluten-free staple foods and ask PCTs to allow doctors and dietitians to use their clinical judgement when prescribing foods for an individual.  Everyone’s lifestyle and preferences are different and this makes a “one size fits all” policy difficult.

More information can be found in the spring 2011 Crossed Grain article

Call for national dialogue - tackling high costs

When a manufacturer applies to have their product available on prescription, they need to have it approved by the Advisory Committee on Borderline Substances (ACBS). The ACBS will look at the type of product, its nutritional value and its cost. The cost covers both the cost of the product plus postage and packaging to get it from the factory to your pharmacy.

However, there are can be issues in the supply chain which lead to additional handling charges above and beyond that approved by the ACBS. This can be due to a range of different factors including:

• the type of product
• the amount of product in stock
• the route it takes from factory to pharmacy.

Coeliac UK strongly believes that gluten-free foods on prescription are an essential NHS service.  But, examples of high costs are driving NHS managers to conclude that gluten-free prescriptions need to be restricted to control budgets. We don’t agree with the high prices linked to delivery and handling and are calling for a national dialogue to ensure a fairer, more transparent system pricing system. for all.

To this end we have met with the All Party Parliamentary Group on coeliac disease and DHAll Party Parliamentary Group on Coeliac Disease and DH is a special interest group in Parliament in Westminster which MPs and Peers can join. It allows a forum for issues affecting people with coeliac disease to be discussed. and Members of the Welsh Assembly. We are also in communication with the ACBS, the Department of Health, manufacturers, wholesales and national bodies representing pharmacies and other healthcare professionals.

We are promoting the revised 2004 guidlines on gluten-free prescribing and a Toolkit on pharmacy-led prescribing schemes at the national and local level.  These highlight the important role of gluten-free prescribing in the treatment of coeliac disease and offer NHS managers an alternative way of handling gluten-free prescribing which empower patients, save GPGeneral Practitioner, or local doctor time and drive down costs.

local campaigns - Taking up your concerns with PCTs and Health boards

Where you have contacted us about your PCT/Health Board restricting your prescription, we have followed up by contacting the PCT/Health Board directly so we can better understand the issues and support the case for people with coeliac disease with appropriate action.  We have then followed this with a letter from Sarah Sleet, our Chief Executive reinforcing the Charity's position on prescribing of gluten-free foods.

Click here for a full list of the PCTs and Health Boards that we have been in touch with.

In a number of areas we have also met with NHS managers and Medicine Management teams. This includes:

• Cardiff
• East Sussex
• Kent
• Oxford
• Stockport
• Surrey
• West Sussex
• Wolverhampton

What do the PCTs say?

In the majority of places it is a good news story with PCTs and Health Boards either confirming that their policies are in line with Coeliac UK's positon on gluten-free prescribing, or reviewing their policies and bringing them back into line. 

This is fantastic news and we are delighted that our interventions are making a difference.  Thank you to all Members and healthcare professionals who have given us their help.

Looking forward however, in light of the current spending cuts within the NHS we know that NHS managers are keeping a very close eye on gluten-free prescribing.  We are doing all we can to make sure that the welfare of people with coeliac disease is not affected by these actions.

TIGHTER RESTRICTIONS

There are a small number of PCTs where the policies being introduced are more restrictive. The most restrictive area is the South East Coast Alliance (covering Surrey, East Sussex, West Sussex and Kent) where only long-life bread and flour are being prescribed, but issues also continue in Stockport and the Wirral.

In these areas, alongside our formal conversations we have been working with Members, Local Voluntary Support Groups, national bodies, MPs and councilors to give ensure a loud voice in opposition to the cuts.  

For more information on restrictions in Surrey, Sussex and Kent visit our South East Coast Alliance webpage.

What can you do

Please do keep us informed of developments within your local area.  The easiest way to do this is by emailing prescriptions@coeliac.org.uk

Local activity is key here as it is local decision makers who are making policy and so this is the track you need to take if you want to have your voice heard.  There are a number of ways you can campaign against prescripton cuts in your local area.  For more information on how to get involved, email prescriptions@coeliac.org.uk

We have also been working with local media to spread the news.  If you want to get involved with this simply complete the Prescription case study form and return to prescriptions@coeliac.org.uk.

We will be keeping all Members updated of developments in Crossed Grain and eXGOur online email newsletter which is sent to our Members each month. .  We will be providing regular updates on our work in this area, plus ways for you to support the Charity.

Presenting a united front

The issue of gluten-free prescribing is an incredibly tough topic to communicate, involving a large number of bodies – both in and out of the NHS. For this reason we are asking everybody to work with Coeliac UK, using the tools that we are developing, to ensure that we present a united front.

For more information on how to get involved, and to give your support  prescriptions@coeliac.org.uk