Post by kickingfrog on Oct 29, 2013 13:34:13 GMT
Restrictive policies on gluten-free prescribing
On April 1 2013 the final wave of the new Clinical Commissioning Groups (CCGs) took control of the local NHS budgets. There are 211 CCGs in total, who are now responsible for commissioning NHS services locally, replacing the old Primary Care Trusts (PCTs).
As we expect many of the CCGs will be reviewing the policies that had been handed over from the former PCTs, we are making sure that CCGs understand the importance of obtaining staple gluten-free foods on prescription in line with the national prescribing guidelines for gluten-free foods.
We recently wrote to all CCGs on the issue and happily most areas are following the national guidelines. However not all are doing so and we continue to make the case for change.
Why are gluten-free prescriptions important?
Following a strict gluten-free diet is the only current treatment for people with coeliac disease and it allows them to live a full and healthy life. However, to do so, it is crucial that they are able to access basic gluten-free substitute foods, such as bread, flour, breakfast cereals and pasta, which are the staples in all our diets
Whilst gluten-free foods are more widely available today, they are not easily available in all places. For example if you are reliant on budget stores or convenience stores, research suggests that gluten-free staples are virtually absent. What’s more they are prohibitively expensive for too many people, costing three to four times more than regular gluten containing foods. The result is that those on a limited income, the elderly or those living in remote rural areas are severely disadvantaged in maintaining their diet.
Prescription Restrictions
We are concerned about restrictive policies on gluten-free prescribing and the impact this may have.
In the past, several of the PCTs restricted the prescribing of gluten-free fresh bread due to concerns about additional handling charges, a complex issue involving manufacturers, wholesalers and pharmacists. Since late summer 2012, gluten-free manufacturers have made a guarantee that such additional costs would not be added. Therefore, the cost of fresh bread is not greater than that of long life bread.
We contacted PCTs and their successor CCGs, to urge them to review their policy of removal of the additional handling charges. In a majority of cases we have succeeded in getting fresh bread reinstated on prescription:
Ashford CCG (reinstated November 2012)
Brighton & Hove CCG (reinstated selected brands May 2013)
Canterbury & Coastal CCG (reinstated November 2012)
Dudley CCG (reinstated November 2012)
Eastbourne, Halisham & Seaford CCG (reinstated January 2013)
Hastings & Rother CCG (reinstated January 2013)
High Weald Lewes & Haven CCG (reinstated November 2012)
Ipswich and East Suffolk CCG (reinstated May 2013)
Medway CCG (reinstated October 2012)
South Kent Coast CCG (reinstated November 2012)
Telford & Wrekin (reinstated October 2012)
Thanet CCG (reinstated November 2012)
West Suffolk CCG (reinstated March 2013)
Wirral CCG (reinstated March 2013).
However the following CCGs continue to not prescribe fresh bread:
Greenwich CCG (London)
Shropshire County CCG
Dartford, Gravesham & Swanley CCG (former West Kent PCT)
West Kent CCG (former West Kent PCT)
Mid Essex CCG (also are no longer prescribing bread mixes).
The following CCGs have other prescription restrictions:
Canterbury & Coastal Kent CCG (not prescribing pasta, crispbread and crackers)
Ealing CCG (not prescribing cereals and oats)
East Staffordshire CCG (not prescribing cereals and oats)
Hastings & Rother CCG, Eastbourne, Halisham & Seaford CCG, High Weald Lewes & Havens CCG and Brighton & Hove CCG (prescribing longlife and fresh breads and flour and bread mix from a restricted list and a maximum of 8 units per person)
Oxfordshire CCG (not prescribing pasta, reduced number of units available)
West Suffolk CCG (not prescribing crackers, crispbreads, breakfast cereals and oats)
How you can get involved
Member involvement at a local level plays a key role in ensuring our voice is heard and that patients’ views are represented.
For matters relating to prescription restrictions, we recommend the following course of action.
If you are affected by the prescribing policy implemented in your area:
Write to Coeliac UK at prescriptions@coeliac.org.uk, highlighting your concerns. Yours views are important to us and can be used in our correspondence with the local Clinical Commissioning Group.
The NHS complaints procedure recommends:
firstly, speak to your GP to understand more about the prescription decision making
you could also speak with your local dietitian, as your dietitian is the best person to speak to in terms of your individual nutritional requirements for gluten-free foods
if you are not happy, you should complain to the service provider first, this will be to your GP practice. GP practices have a complaints procedure, speak to the practice manager and complain in writing
if you are still unhappy, you may want to contact your CCG.
By campaigning with us you can help us create change.
On April 1 2013 the final wave of the new Clinical Commissioning Groups (CCGs) took control of the local NHS budgets. There are 211 CCGs in total, who are now responsible for commissioning NHS services locally, replacing the old Primary Care Trusts (PCTs).
As we expect many of the CCGs will be reviewing the policies that had been handed over from the former PCTs, we are making sure that CCGs understand the importance of obtaining staple gluten-free foods on prescription in line with the national prescribing guidelines for gluten-free foods.
We recently wrote to all CCGs on the issue and happily most areas are following the national guidelines. However not all are doing so and we continue to make the case for change.
Why are gluten-free prescriptions important?
Following a strict gluten-free diet is the only current treatment for people with coeliac disease and it allows them to live a full and healthy life. However, to do so, it is crucial that they are able to access basic gluten-free substitute foods, such as bread, flour, breakfast cereals and pasta, which are the staples in all our diets
Whilst gluten-free foods are more widely available today, they are not easily available in all places. For example if you are reliant on budget stores or convenience stores, research suggests that gluten-free staples are virtually absent. What’s more they are prohibitively expensive for too many people, costing three to four times more than regular gluten containing foods. The result is that those on a limited income, the elderly or those living in remote rural areas are severely disadvantaged in maintaining their diet.
Prescription Restrictions
We are concerned about restrictive policies on gluten-free prescribing and the impact this may have.
In the past, several of the PCTs restricted the prescribing of gluten-free fresh bread due to concerns about additional handling charges, a complex issue involving manufacturers, wholesalers and pharmacists. Since late summer 2012, gluten-free manufacturers have made a guarantee that such additional costs would not be added. Therefore, the cost of fresh bread is not greater than that of long life bread.
We contacted PCTs and their successor CCGs, to urge them to review their policy of removal of the additional handling charges. In a majority of cases we have succeeded in getting fresh bread reinstated on prescription:
Ashford CCG (reinstated November 2012)
Brighton & Hove CCG (reinstated selected brands May 2013)
Canterbury & Coastal CCG (reinstated November 2012)
Dudley CCG (reinstated November 2012)
Eastbourne, Halisham & Seaford CCG (reinstated January 2013)
Hastings & Rother CCG (reinstated January 2013)
High Weald Lewes & Haven CCG (reinstated November 2012)
Ipswich and East Suffolk CCG (reinstated May 2013)
Medway CCG (reinstated October 2012)
South Kent Coast CCG (reinstated November 2012)
Telford & Wrekin (reinstated October 2012)
Thanet CCG (reinstated November 2012)
West Suffolk CCG (reinstated March 2013)
Wirral CCG (reinstated March 2013).
However the following CCGs continue to not prescribe fresh bread:
Greenwich CCG (London)
Shropshire County CCG
Dartford, Gravesham & Swanley CCG (former West Kent PCT)
West Kent CCG (former West Kent PCT)
Mid Essex CCG (also are no longer prescribing bread mixes).
The following CCGs have other prescription restrictions:
Canterbury & Coastal Kent CCG (not prescribing pasta, crispbread and crackers)
Ealing CCG (not prescribing cereals and oats)
East Staffordshire CCG (not prescribing cereals and oats)
Hastings & Rother CCG, Eastbourne, Halisham & Seaford CCG, High Weald Lewes & Havens CCG and Brighton & Hove CCG (prescribing longlife and fresh breads and flour and bread mix from a restricted list and a maximum of 8 units per person)
Oxfordshire CCG (not prescribing pasta, reduced number of units available)
West Suffolk CCG (not prescribing crackers, crispbreads, breakfast cereals and oats)
How you can get involved
Member involvement at a local level plays a key role in ensuring our voice is heard and that patients’ views are represented.
For matters relating to prescription restrictions, we recommend the following course of action.
If you are affected by the prescribing policy implemented in your area:
Write to Coeliac UK at prescriptions@coeliac.org.uk, highlighting your concerns. Yours views are important to us and can be used in our correspondence with the local Clinical Commissioning Group.
The NHS complaints procedure recommends:
firstly, speak to your GP to understand more about the prescription decision making
you could also speak with your local dietitian, as your dietitian is the best person to speak to in terms of your individual nutritional requirements for gluten-free foods
if you are not happy, you should complain to the service provider first, this will be to your GP practice. GP practices have a complaints procedure, speak to the practice manager and complain in writing
if you are still unhappy, you may want to contact your CCG.
By campaigning with us you can help us create change.