nhs prescriptions for gluten free food consultation report june 2012

7/31/2019 NHS Prescriptions for Gluten Free Food Consultation Report June 2012

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NHS Prescriptions for Gluten-free food

Consultation Report

Author(s): On behalf of Oxfordshire Clinical Commissioning Group:Julia Stackhouse, Communications & Engagement CoordinatorSarah Adair, Head of Communications & Engagement

Date: May 2012



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Contents

1. About Us...................................................................................................... 4 1.1. The Oxfordshire Clinical Commissioning Group..................................... 4

2. Executive summary.................................................................................... 5 2.1. Background................................................................................................. 5 2.2. NHS prescriptions for Gluten-free food.................................................... 6 2.3. Process & Methodology............................................................................. 6 2.4. Key Findings ............................................................................................... 6 2.5. Conclusions ................................................................................................ 8

3. Background................................................................................................. 8 3.1. Prescribing gluten-free food for Coeliacs ................................................ 8 3.2. What prompted OCCG to consider withdrawing NHS funding ofprescriptions for gluten-free food? ..................................................................... 9 3.3. What did OCCG do before coming up with the proposal?.................... 10 3.4. Why undertake this consultation? .......................................................... 10 3.5. Consultation Duration.............................................................................. 11 3.6. How will the feedback be used?.............................................................. 11

4. Stakeholders............................................................................................. 11 4.1. Key stakeholders identified..................................................................... 11

5. Consultation process ............................................................................... 13 5.1. Online Engagement.................................................................................. 13

6. Responses ................................................................................................ 15 6.1. Responses ................................................................................................ 15 6.2. Meetings with the Public.......................................................................... 15 6.3. Survey Responses.................................................................................... 15 6.3.1. Number and geographical spread of responses of the survey ............ 15 6.4. Survey Results.......................................................................................... 17

7. Correspondence....................................................................................... 33 7.1. Letters and emails from the public ......................................................... 33 7.2. Primary Care Clinicians – GPs & pharmacy........................................... 34 7.3. MPs ............................................................................................................ 34 7.4. Clinical and stakeholder responses........................................................ 35

8. Manufacturing and Supply Chain............................................................ 36

9. Proposals and alternative suggestions from the public ....................... 37

10. Key findings.............................................................................................. 38



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11. Next steps ................................................................................................. 39

12. Thanks....................................................................................................... 40

13. Supporting information............................................................................ 41

14. Appendix 1 –Survey ................................................................................. 42

15. Appendix 2: Background information provided in the consultation... 51

16. Appendix 3: Statistical Data relating to spend on Gluten-free food inOxfordshire, as supplied to local media & Coeliac UK.................................... 54

17. Appendix 4: Lavender Statement: Prescribing gluten free foods ...... 61

18. Appendix 5 – Patient Feedback/Evidence .............................................. 61



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1. About Us

1.1. The Oxfordshire Clinical Commissioning Group

In July 2010 the Government published a White Paper, Equity and Excellence: Liberatingthe NHS, setting out its long term vision for the NHS. In order to shift decision-making asclose as possible to patients, power and responsibility for commissioning health services(the planning, designing and paying for NHS services), which is currently the responsibilityof Primary Care Trusts (PCTs) will become the job of local groups of GPs, supported byother clinicians and health professionals. The Health and Social Care Act 2012 is theresulting legislation from the White Paper.

The key changes included in the Act are: Primary Care Trusts (PCT) and Strategic Health Authorities will be abolished. Clinicians will have responsibility and budgets for commissioning. They will work

together in Clinical Commissioning Groups. Greater emphasis on outcomes for patients, rather than simply meeting targets. Putting patients at the heart of the NHS. More independence for healthcare providers and reduced bureaucracy. Public Health functions currently sitting with PCTs will move to and be led by the

Local Authorities.

In the autumn of 2010 GPs from the 83 practices in Oxfordshire agreed to form a singlecounty-wide clinician led commissioning organisation called the Oxfordshire ClinicalCommissioning Group (OCCG). The OCCG has six localities, serving a population ofnearly 700,000:

North North East Oxford City South East South West West

The localities are increasingly taking on responsibility for commissioning local healthservices for the public and for the Quality, Innovation, Productivity and Preventionprogramme (see page 5 for more information). All of the GP practices in the county arepart of the OCCG structure – through the locality structure. Each area of work under QIPP(planned care, urgent care, long term conditions, medicines management and complexcare) has a GP lead who works very closely with managers implementing the programmesof work and advocating the work to their clinical colleagues. There are also GPs taking alead role for special projects such as the implementation of NHS 111 and the AppropriateCare for Everyone programme which is tackling delayed transfers of care in the county.

The OCCG Transition Board, which has representation from all localities within OCCG,was responsible for developing a work programme for transition during 2011/12.

Now a new OCCG Shadow Governing Body, which replaced the OCCG Transition Boardas of April 2012, is responsible for developing a work programme through the transition



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period. The OCCG Shadow Governing Body is a sub committee of the NHSBuckinghamshire and Oxfordshire Cluster (PCT Cluster) Board.

2. Executive summary

2.1. Background

Overall NHS spending will increase by 0.4% in real terms to 2015. However, thegovernment is also seeking £20bn in efficiency and productivity savings by 2014. Despitea 2.8% increase in funding for the NHS in Oxfordshire for 2012-13, there are morefinancial pressures than ever because:

the population of Oxfordshire is growing, and more people are living on into oldage;

advances in technology mean that new (and generally more costly) medicines andtreatments are becoming available all the time;

patients and the public have higher expectations of care and treatment by the NHS; the costs of items such as medicines, food and petrol are increasing – inflation

impacts on hospitals and other health care providers, as it does on all of us.

The impact of the above factors is that the NHS in Oxfordshire has to find efficiencysavings of £100m over the next three years in order to continue to provide the current levelof health services and enable investment in key priorities.

This difficult financial situation affects health care services across England, not justOxfordshire, and the Department of Health has initiated a programme of work calledQuality, Innovation, Productivity and Prevention (QIPP). This approach looks at how theNHS can protect and promote quality while releasing savings across health systems. It isthe responsibility of all NHS health care providers in Oxfordshire to help deliver the localQIPP plan and NHS organisations across the county are already working together torespond to this challenge.

The QIPP plan has been developed to deliver the vision of improving the health and well-being of people in Oxfordshire by providing the best possible health services within theresources available. Collectively the NHS will do this by:

1. Helping people to manage their own health through self care and health promotion.2. Integrating health and social care teams in the community to ensure patients can

access the right treatment when they need it.3. Reviewing the delivery of hospital care, and moving services to the community

where it is clinically appropriate.4. Reviewing the provision of services that are shown to be less clinically effective

and provide insufficient health benefits and those that do not represent good valuefor money.

The NHS is involving staff, GPs, clinicians and healthcare professionals to ensuredecisions about which services to continue to provide and which to replace are based onevidence of clinical and cost effectiveness, local priorities and health care needs, andvalue for money.



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2.2. NHS prescriptions for Gluten-free food

As part of the QIPP work the OCCG has been reviewing the provision of services that are

shown to be less clinically effective and provide insufficient health benefits and those thatdo not represent good value for money.

In Oxfordshire the NHS spends £350,000 each year on prescriptions for gluten-free foodsfor people with coeliac disease. Given that the NHS does not provide food on prescriptionfor other groups of patients whose diseases are associated with, or affected by, the type offood they eat and due to the now wider availability of gluten free products, NHSprescriptions of gluten-free foods were identified as a potential area for disinvestment.Following this OCCG developed a proposal to withdraw the funding for gluten free food onNHS prescriptions.

OCCG understands that the proposal to withdraw gluten free foods on prescriptions may

have an impact on some people with coeliac disease. As such OCCG launched aconsultation in order to hear the views of patients, clinicians, and the wider public, and toensure that OCCG, as the new NHS commissioners for Oxfordshire, were aware of thelikely effects / impact of the proposal before making a decision.

2.3. Process & Methodology

A number of methods of engagement were used throughout the consultation to gain viewson the proposal and ensure maximum feedback from a wide variety of stakeholders1 during the consultation period.

This involved: A public survey set up on Talking Health, along with a briefing document explaining

the background behind the proposals. Hard copy surveys were available on request. Feedback via email, letter or by phone. Stakeholder briefings Stakeholder meetings / community groups

2.4. Key Findings

955 responses were received to the consultation. This included 859 responses to thesurvey, letters from the public, responses from clinicians (GPs and consultants) andvoluntary organisations. 666 of those who responded to the survey either directly receivedgluten-free food on NHS prescription for themselves or for someone they care for. Theserespondents or someone they cared for had direct experience (within the past year) of theNHS prescription service for gluten free foods.

1Stakeholder:o A person or group with a direct interest, involvement, or investment in something.o Stakeholders are individuals or organisations that have a direct interest in a service

being provided.



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2.4.1. Analysis of the findings resulted in the following themes emerging, as reasonswhy respondents do not support the proposals:

Cost and AffordabilityThroughout the responses a significant amount of concern was expressed about thenegative financial impact of the proposals on those that are elderly, on low incomes or inreceipt of benefits. There was also concern that children will be affected adversely as aresult.

AvailabilityA clear trend within the responses related to the availability of gluten-free products insupermarkets. Oxfordshire is primarily a rural county and gluten-free products are notconsistently available across the county. Small local shops often do not stock a widevariety of gluten-free products and can run out quicker than larger supermarkets.

It was raised that for those people that are disabled or do not have access to a car it isharder to reach larger supermarkets which offer a wider variety, as such they are unable toshop around to get products and find the prescription service via their local chemist to beconvenient.

Quality of gluten free foodThe quality of gluten free food was a strong theme. The perception of respondents wasthat prescription products are of a superior quality than those available in shops.Prescription products are perceived to have higher nutritional value, better taste, are atrusted product and guaranteed not to have been cross contaminated with non-gluten freeproducts. For some people that have other co-morbidities, it was felt that the productsavailable in the supermarkets are not of a sufficient nutritional standard to be able to meet

their dietary needs.

ComplianceRespondents felt very strongly that the availability of gluten free products on NHSprescription helps them to maintain their gluten-free diet. Due to the reasons shown above,respondents felt that without their NHS prescription they would struggle to meet their owndietary needs. Respondents felt that in the long term the withdrawal of funding for NHSprescriptions for gluten free food could cost the local NHS more as people could developfurther health problems as a result of not adhering to the gluten-free diet in themanagement of their coeliac disease.

Support

A general perception from respondents was that there is currently little support available tocoeliacs to help them manage their diets. They felt that:

Access to dieticians is limited

GPs often had a lack of knowledge about the condition and did not have theexpertise to offer nutritional advice.

Ongoing testing (e.g. bone density) to check the health of people with coeliacdisease was sporadic

SocialRespondents felt that having coeliac disease is socially depriving. There was a strongmessage that people with coeliac disease want to be socially accepted, through eating



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foods that are perceived as ‘normal’. This was especially important for children. It was feltthat for children with coeliac disease to eat ‘normal’ foods, like sandwiches and cake,enabled them to participate in ‘normal’ childhood activities.

RestrictionsSome respondents indicated they would be willing to accept a restricted availability ofgluten free food on NHS prescription; e.g. restriction of NHS prescription to flour and breadand to limit the units of items.

2.4.2. The following themes relate to those individuals that agree with the proposals;however it should be noted that for a significant number of respondents agreeingwith the proposals came with the following caveats:

1. Agree – if cost effective2. Agree – if sufficient alternative support is offered to patients

ChoiceFor those respondents that were supportive of the proposals they felt that people withcoeliac disease did not have to eat gluten free food and that there are plenty alternativesto food with gluten and / or gluten free food in order to maintain a nutritional and diversediet. It was felt that people with coeliac disease should be supported to eat alternativefoods to food containing gluten rather than substituting with gluten free foods. However itwas noted that this could be harder if you are elderly or financially restrained, on lowincome or on benefits. For those respondents with coeliac disease that didn’t have gluten-free prescriptions they explained they cooked their food from scratch and did not rely onconvenience foods.

The role of the NHS

Some respondents felt that it is not the role of the NHS to provide food for people and thatthe money saved could be used for other NHS services.

2.5. Conclusions

The proposal to withdraw NHS funding for the provision of gluten free products onprescription attracted significant interest from the public and other stakeholders. OCCG isgrateful to those who took part in the consultation.

Overall, those responding to the consultation did not support the proposal, however, it isrecognised that savings within the NHS have to be found.

The themes from the report will be considered by OCCG when making a decision inAugust 2012 as to whether or not to progress with the original proposal.

3. Background

3.1. Prescribing gluten-free food for Coeliacs

In Oxfordshire the local NHS spends £350,000 each year on prescriptions for gluten-freefoods for people with coeliac disease.



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Coeliac disease is a common digestive condition, triggered by the protein gluten. Ifsomeone with coeliac disease is exposed to gluten (which is found in wheat, barley and

rye) they may experience a range of symptoms and adverse effects. The symptoms maybe mild or very severe, and can include:

abdominal pain, diarrhea, nausea, vomiting, bloating weight loss in adults or, in children, failure to grow at the expected rate malnutrition, deficiencies in iron, vitamin B12 and folic acid tiredness, headaches skin rash mouth ulcers brittle bones (osteoporosis), tooth enamel problems

The disease affects approximately 1 in every 100 people in the UK. Women are two tothree times more likely to develop coeliac disease than men. Cases of coeliac disease

have been diagnosed in people of all ages.

Coeliac disease is controlled by excluding foods that contain gluten from the diet. Thereare no medicines available to treat the condition, and it cannot be cured. Adults andchildren with confirmed coeliac disease must give up eating all sources of gluten for life.

3.2. What prompted OCCG to consider withdrawing NHS funding of prescriptionsfor gluten-free food?

Prescriptions for gluten-free foods were identified as a potential area for disinvestment fora number of reasons.

The Department of Health’s information website, NHS Choices, advises the public that:As a protein, gluten is not essential to your diet and can be replaced by other foods.Many gluten-free alternatives are widely available in supermarkets and health food shops, including pasta, pizza bases and bread. Many basic foods, such as meat,vegetables, cheese, potatoes and rice, are naturally free from gluten so you can still include them in your diet. http://www.nhs.uk/Conditions/Coeliac-disease/Pages/Treatment.aspx

Alternative foods are readily available; gluten is not essential for a healthy diet; andtherefore there is the potential for savings.

Twenty or thirty years ago, only a small range of ‘gluten-free’ foods were available andthese were relatively expensive. To enable people to manage their disease, GPs wereable to provide gluten-free foods on prescription. However, in recent years there havebeen considerable improvements in the types of foods available in shops andsupermarkets. Nowadays:

there is a wide range of gluten-free foods in supermarkets, eg, gluten-freepasta, pizza bases, cakes and breads;

there is a good choice of various makes of gluten-free food; the cost of gluten-free foods is not as high as it used to be; non-wheat, barley or rye based foods that provide carbohydrates are readily

available, e.g., potatoes and rice.



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It has been argued that the NHS does not provide food on prescription for other groupsof patients whose diseases are associated with, or affected by, the type of food theyeat.

In England, Primary Care Trusts have varying local policies about the types of productsthat they advise their GPs to prescribe. For example,

Greater Manchester PCTs policy states: Greater Manchester PCT does notrecommend the prescribing of cakes / cake mixes, sweet biscuits or pizzabases in the interests of promoting healthy eating. Fresh bread is not routinelyrecommended due to additional costs associated with postage, packing andadministration charges, professional fees, wholesale delivery charges, shelf life& storage issues.

NHS East Sussex will fund prescriptions for flour and certain types of bread(not fresh bread or pasta).

NHS Shropshire restricts the availability of prescribed gluten-free products to

adults, but not to children.

3.3. What did OCCG do before coming up with the proposal?

1. A Lavender Statement2 has been in place since April 2004 (see Appendix 4); itrecommends prescription of staple items such as flour and bread and gives arecommended unit allowance per month. However not all GPs within Oxfordshire areprescribing within the guidance of the Lavender statement as shown by Appendix 3:statistical data relating to spend on gluten-free food in Oxfordshire.

2. The local NHS is not able to make savings through prescription fees as these are usedto offset the cost of the medicines, which is done centrally.

(eg: A pharmacist is reimbursed each month for the costs of the medicines they dispense, less the prescription charges that they receive. So there is no benefit to the PCT or indeed to the local pharmacy of collecting prescription charges. Those patients that are eligible have a duty to pay a prescription charge and if they purchase a pre payment certificate this money automatically goes centrally to government and not to the local NHS).

3. OCCG has also looked at supply chain issues with pharmacies as there are a numberof schemes detailed in the handbook ‘Community pharmacy supply of gluten-freefoods – a toolkit for commissioners’ which was developed by Coeliac UK, the NationalPharmacy Association and Pharmaceutical Services Negotiating Committee. Theschemes presented in the handbook included those adopted in Northampton, Cumbria

and Copeland. Northampton and Cumbria both prevented the cost of prescribinggluten free food from increasing, but they did not produce a saving. A saving wasproduced in Copeland but this was due to restricting the supply of cake and biscuits onprescription. In Oxfordshire, we have already restricted this supply.

3.4. Why undertake this consultation?

2 Lavender Statements are the local commissioning policies for Oxfordshire. NHS organisationscaring for Oxfordshire patients must take account these statements when considering treatment orreferral to other specialists.



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The local NHS is facing a huge financial challenge; OCCG has to look at the servicesbeing funded to ensure that they represent good use of NHS resources for all ofOxfordshire’s population.

OCCG recognises that withdrawing gluten free products on prescriptions will have animpact on some people with coeliac disease. In order for OCCG to hear the views ofpatients, clinicians, and the wider public and to ensure that OCCG, as the new NHScommissioners for Oxfordshire, were aware of the likely affects of the proposal it hasundertaken this consultation. The feedback received will enable OCCG to consider arange of options before making a decision.

3.5. Consultation Duration

The consultation was launched on 6 January 2012 and closed on 2 March 2012.

3.6. How will the feedback be used?

The responses gathered will be used to understand how these proposals will impact thosecurrently using the service. Following the feedback received suggestions final proposalswill be considered by OCCG at its August 2012, Shadow Governing Body meeting.

4. Stakeholders

OCCG has a large number of stakeholders it needs to involve and communicate with. Theprimary target group identified for this consultation were people with coeliac disease,carers and family of people with coeliac disease, GPs, pharmacists and dietectic services.It was also important that OCCG seek the views of people who have other health

conditions for which a food prescription service is not available.

Other stakeholders included, Coeliac UK (both nationally and locally), consultantspecialists at the Oxford University Hospitals NHS Trust (OUH), partner organisations,professional bodies and political partners e.g. MPs and Local Councillors.

4.1. Key stakeholders identified

The key stakeholders identified for this consultation included:

Public: People with Coeliac Disease Patients with other health needs requiring a specific diet Carers / family of people with coeliac disease Public Local Involvement Network (LINk) Patient Participation Groups (associated with GP practices) Community Groups Special Interest Groups Voluntary Organisations / Charities Websites/social networking sites

Other:



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GP Practice staff Oxfordshire GPs NHS Buckinghamshire & Oxfordshire Cluster staff

Oxfordshire County Council staff Local Medical Committee Health care professionals eg Dieticians, specialist consultants MPS & Councillors



5. Consultation process

A number of different communication and engagement methods were used in order toensure that OCCG were able to reach and receive views and feedback from a wide varietyof stakeholders.

In total we received 955 direct responses to the consultation:

859 completed surveys

65 letters and emails from the public

12 responses from GP practices and pharmacies

3 letters from advocacy and advice organisations (e.g British Specialist NutritionAssociation Ltd, British Dietetic Association and Coeliac UK)

4 letters from gluten free production companies (e.g. Juvela) 6 letters from clinicians, including The department of Nutrition & Dietetics at Oxford

University Hospitals NHS Trust and Oxfordshire Local Pharmaceutical Committee

6 letters from local MPs

5.1. Online Engagement

NHS Buckinghamshire and Oxfordshire Cluster’s TalkingHealth websiteAn online consultation was set up on behalf of OCCG on the‘Talking Health’ website. This included a public survey along withsupporting materials for participants to download and share. The

online survey was also made available on the site for people toprint and submit as a hard copy.

NewslettersThe consultation was communicated widely to all internal and external stakeholders usinga variety of electronic newsletters e.g. using the Talking Health newsletter to reachexternal stakeholders, the Oxfordshire Clinical Commissioning Groups (OCCG) weeklyinternal update, and the OCCG monthly stakeholder newsletter and through the PCTCluster staff newsletter (The Point). In addition information about the consultation alsoappeared in the February newsletter from the Oxfordshire Autistic Society (Oasis).

Twitter and Facebook

A number of announcements and ‘tweets’ were made on the PCTCluster Twitter and Facebook pages on behalf of OCCG through theduration of this consultation. These messages reminded people how to give their viewsand reached over 1,300 people on the Cluster Twitter page and 550 people on the PCTCluster Facebook page.



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Online Discussion Forums and BlogsThe consultation was widely publicised through various discussion forums such as Mumsnet, The gluten-free message Board, Foods Matter Blog, Say. Blog, netmums,

BrennyBaby Blogspot, Gluten-free Guerillas and Gluten-free Blogger.

EmailPersonal invitations to participate in the evaluation were emailed directly to stakeholders,who had expressed an interest in taking part in consultations and workshops, via ‘TalkingHealth’.

Personal invitations were also distributed to contacts who had expressed an interest infinding out more about getting involved in the work of OCCG.

The Oxfordshire Community and Voluntary Action distribute an electronic flyer on OCCG’sbehalf, advertising the consultation to their network of over 600 voluntary and community

sector contacts.

The consultation invitation was also circulated to all members of the Local InvolvementNetwork (Links).

Media CoverageAt the launch of the consultation a press release was distributed to all local Oxfordshiremedia contacts. The story was quickly publicised by other viral news networking sites suchas Topix, Silobreaker, Speed, Newsjiffy, Oxfordshire local news, and the OxfordshireHerald series.

The Oxford Mail received over 100 comments online in response to their article about the

consultation, many of the comments reflected those received directly through theconsultation process.

Voluntary OrganisationsCoeliac UK wrote to all of its members to inform them of the consultation and to encouragepeople to respond. They also publicised the consultation on their website.

ManufacturersJuvela, a gluten free food manufacturer, wrote to its clients to inform them of theconsultation and to encourage people to respond. They also publicised the consultationon their website.

PetitionAn online petition against the proposals was set up by a member of the public and thisreceived over a 2000 signatures.



6. Responses

6.1. Responses

859 responses to the survey were received, along with 65 letters from the public andemails and 6 letters from Members of Parliament representing their constituents. Inaddition we also received correspondence from the British Specialist Nutrition Association(BSNA Ltd), Juvela, Oxfordshire Local Pharmaceutical Committee.

6.2. Meetings with the Public

The communications and engagement team also met with Coeliac UK, both locally andnationally to receive feedback to the proposals. A meeting was also agreed between

OCCG and a member of the public who wanted to present his views in response to theconsultation.

6.3. Survey Responses

6.3.1. Number and geographical spread of responses of the survey

In total 859 responses to the survey were received. For those who responded onlineindividuals were required to register and so we were able to capture their demographicinformation. However, a proportion of responses were received in hard copy format (409)and were therefore anonymous. The survey included multiple choice questions and free

text questions to help draw out people’s feedback.

The map below shows the location of the responses received online.

Map A shows 666 ‘Red’ responses from people who either have coeliac disease or carefor someone with coeliac disease and have had experience of the NHS prescriptionservice. This map reflects the individuals that responded to the survey online andprovided their postcode. 357 of these responses are not shown on the map as postcodeswere not available. Whilst there was a significant response from within Oxfordshire, wealso received responses from outside the county, including Glasgow, Huddersfield,Bournemouth and London.

Map B shows 193 ‘Green’ responses came from those that did not have Coeliac diseaseor did not have experience of the NHS prescription service. This map reflects theindividuals that responded online by providing their postcodes. 50 of these responses arenot shown on the map as their postcodes were not available. The responses whilst mainlyfrom Oxfordshire residents also came from other parts of the country including,Portsmouth, Liverpool, Hull, Middlesborough and Bradford.



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MAP A MAP B

Map C shows the spread of responses across the geographical area of theBuckinghamshire and Oxfordshire Cluster.



6.4. Survey Results

Question 1: NHS Oxfordshire has identified the provision of gluten-free food onprescription for people with coeliac disease as one of the services that we no longerwish to provide. Please could you tell us whether you (or someone you care for)receive gluten-free food on prescription or if you (or someone you care for) hasdirect experience (within the past year) of the service.

Of those that responded to the survey 666 had had direct experience of the service,compared with 193 who have not.

Question 2: If you have answered ‘Yes’ in question 1, please could you tell us

whether you are: Someone with Coeliac Disease

a parent of someone with Coeliac Disease

a carer of someone with Coeliac Disease

a medical professional

Other (please specify)

For those that have had direct experience of the gluten-free prescribing service 517 arepeople that have Coeliac Disease. 89 people are either carers or parents of someone whohas Coeliac Disease. 27 responses came from medical professionals and 53 responsescame from a variety of other people, including: social care professionals, prison staff,



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childcare professionals, pharmacists, nursing staff and manufacturers of gluten-freeproducts.

The majority of respondents are directly affected by the proposals set out in thisconsultation.

Question 3: If you have responded ‘no’ please tell us more about your interest:

I / (or someone I care for) have Coeliac Disease but do not request gluten-freefood on prescriptions

I / (or someone I care for) have other health issues where food managementis important

I have an interest in NHS services

I represent an organisation with an interest in this service

Other (please specify)



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193 respondents said that they did not have experience of the gluten-free prescribingservice. The reasons given for this were in 87 cases because they have an interest in

NHS services, 57 selected because they have coeliac disease but do not use prescribingservices. 53 responses were for ‘other’ these included: members of Patient ParticipationGroups, GPs, patients with other health conditions and community pharmacists. This wasnot a compulsory question, some respondents chose not to answer.

Question 4: If you have answered: ‘I (or someone I care for) have other healthissues where food management is important.’ Please tell us which of the followingapply to you:34 respondents said that they or someone they care for have other health issues wherefood management is important. Responders were able to make multiple selections in

response to this question. In addition to the conditions listed, 87 respondents listed otherconditions including: Osteoporosis, Dermititus Herpetoformis, Thyroid Disease, Asthma,Depression, Vitamin D Deficiency, Diverticulitis, Kidney Disease, Dementia, Bowel Cancer,Downs Syndrome, Parkinsons Disease, Pagets Disease, Anorexia, Tree nut allergy andCOPD.



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Question 5: If you are a person with Coeliac Disease or you care for someone withCoeliac Disease and you or they do not request or receive prescriptions for food,please could you indicate which if any of the following reasons for this apply.This question was multiple choice and the strongest themes that emerged, as to whypeople do not receive gluten-free food on prescription were:

15% - Food on prescription is limited in its variety15% - willing to pay for the products14% - prefer to shop around and not be dependent on prescriptions.

Five respondents were unaware that they could get food on prescription.



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Please could you tell us more about your reasons for not receiving food onprescription:32 respondents gave additional comments, giving weight to choice and independence:

They prefer to shop around for products

They are newly diagnosed so still finding out about what is available and tastesgood

They can afford to buy their products.

‘My GP has only ever prescribed the basics (bread, flour, pasta) and I prefer the variety

now available in the shops’.

‘We are in the fortunate position to pay for and shop around. But many products, on prescription not suitable owing to other food intolerances’.



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However, for a small minority that seems to be inconsistency across GP surgeries aboutwhat can and cannot be prescribed. For 3% of respondents their GP would not issue a

prescription for gluten-free food.

‘GP reluctant to prescribe’ ‘My GP says that his practice do not prescribe gluten free’.

‘there is very little choice from the GP and they are reluctant to give a prescription’.

Question 6: If you are a person with coeliac disease or you care for someone with

coeliac disease and you or they do receive food on prescription please could youindicate why you or they use this service?

This question was a multiple choice question; respondents were able to tick those reasonsthat where relevant to them. The responses showed a strong theme emerging aroundcost and affordability of gluten-free food.

542 respondents indicated they receive NHS prescriptions for gluten-free foodbecause supermarket gluten free food is too expensive.

353 respondents indicated they received gluten-free food on NHS prescriptionbecause they are eligible for free NHS prescription.

290 respondents felt that it is their right to receive food on prescription as they have

Coeliac Disease. A small number of respondents use the service as they do not have access to

transport to shop around.



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Please could you tell us more about your reasons for why you or the person youcare for has chosen to receive gluten-free food on prescription:397 responses were received for this question giving reasons for using the service, themain themes for why they receive NHS prescriptions relate to cost/affordability andavailability of gluten-free food in supermarkets. Further clarity is outlined below:

CostIt should be noted that the consultation received many comments throughout the surveyrelating to the cost of the products; this is a key theme that runs through all the questionsasked.



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154 respondents stated that supermarket products are expensive and notaffordable. The reasons given related specifically to people on low incomes,pensioners and those in receipt of benefits. Other areas of concern related to

students and those who have multiple members of their families affected byCoeliac Disease.

Respondents said that they were eligible for free NHS prescriptions as they werepensioners.

Respondents said that they were eligible for free NHS prescriptions as they wereunder 16 (Children).

A proportion of respondents pay for their prescriptions and felt that they should beeligible for the prescription as they pay an NHS prescription charge.

Some respondents felt that it was cheaper to have pay for products on prescriptionthan pay for products in a supermarket.

‘Example: a small GF loaf costs around £2.50 plus normal bread, a large loaf is around

£1.10 ‐ £1.30. That is a huge difference in price’.

‘Staple foods, such as bread and pasta should remain available on prescription. My

daughter will not be able to afford loaves of bread at £3 for 600g (approx. 13 slices per

loaf) and Pasta at over £2 for 500g and four brown rolls over £2.00 (approx £2.20

Genius brown rolls at the Co‐op)’.

‘I have Glutafin bread because it is the one I get on with, I use 2‐3 loaves a week, but it

has only 8 slices and most bread from supermarkets cost £3.24 to £3.80 so a loaf as an

OAP it would have to stop me from buying it’.

Question 7: There are a variety of gluten free brands and services available insupermarkets and on prescription, please could you indicate which of the followingbrands you have used and which you prefer:

The results below show that respondents who are using NHS prescriptions for gluten-freefood are also shopping widely in supermarkets. Approximately 470 respondents stated

they supplemented their main shopping with prescriptions for gluten-free food.

Brand Use PreferSainsbury’s Free From 475 123Glutafin 469 246Juvela 464 275DS 438 150Genius 398 153Tesco Free From 387 79Warburtons 227 70Livwell 213 60



25

Barkat 140 20Dr Oetker 118 23Glebe Farm 108 23

EnerG 96 10Kelkin 71 11Procela 51 10Rizopia 32 14Goodness Direct 27 5Bi-Aglut 22 6Heron Foods 17 6Il Pane di Anna 17 13Antoinette Savill 9 3Bi Alimenta 4 3

Drossa Fine Foods 3 4Finax 3 3

Question 8: Please could you tell us if there are any other brands that you haveused.There were 581 responses to this question. Over 35 other brands were listed. A full list ofthese manufacturers is shown in Appendix 4. The wide variety of other brands listed byrespondents suggests that people are shopping widely to meet their dietary needs.

Question 9: Please could you tell us why you prefer the brands you have chosen.

Brand loyaltyThe responses show that people source gluten-free food for a variety of reasons and oncethey have found a product that meets their needs they tend to stay with that brand. Themain reason given for brand loyalty related to taste with 309 respondents sighting this as ahigh priority.

‘I am unable to receive the same range of products in supermarkets and although this

range may have improved I feel that there is an underlying problem that these products

taste disgusting! I hate my condition and wish I could get rid of it and being only 15 years

of age’

Quality/Nutritional contentThe quality and nutritional content of the product is also of high importance to respondentsin managing a gluten-free diet. For many respondents having confidence in a product andtrust in a manufacturer is important. This could indicate a fear of trying brands notavailable on prescription as people have become dependent on the products that theytrust.

Please note that I have never seen any Glutafin or Juvela products in the supermarkets. As

far as I am aware the Glutafin codex wheat starch fresh bread and Juvela codex wheat

starch flour (white mix etc) is only available on prescription AND IT IS ESSENTIAL THAT IT

REMAINS SO!!



26

‘Juvela products are very good quality and I trust the high standards of manufacture. I

have never had a bad reaction with the Juvela products. If they were not available on

prescription I would not be able to afford them. I have tried gluten free products from M&S (sandwhich)and gluten free pasta from Sainsbury's and had a bad reaction on both

occasions’.

For the majority of respondents their preferred gluten free foods are only available onprescription. The perception is that certain products have been specially designed withcoeliacs in mind and have been specifically manufactured with appropriate nutritionalcontent to support the dietary needs of people with coeliac disease. Respondents saidthat the taste of certain brands products were superior to their counterparts insupermarkets and have been specially designed to taste good.

‘Prescribed gluten

‐ free

food

is

re

‐enforced

with

calcium

iron

and

fibre

by

nutritional

regulations; recipes and ingredients (if modified by the commodities available) must

continue to comply with strict nutritional guidelines. These aim to contribute to the

(high) daily requirements of calcium and iron necessary to the continued health of

those with coeliac condition. Osteoporosis is an expensive condition of the elderly,

when limb breakages and spinal problems occur. Strength of bones and intake of

calcium, vitamin D and iron and necessarily linked’.

ChildrenFor those managing a child’s gluten-free diet it was felt to be important that they shouldhave access to ‘normal’ packed lunches with sandwiches and that often school dinners donot cater for coeliac disease. It is perceived by respondents that children will be negativelyimpacted if the proposals go ahead.

‘Removing foods on prescription will hit the most vulnerable people especially children

from low income backgrounds were not only money is an issue but also education to be

able to cook and create with gluten free options’.

OtherIn addition to the themes outlined above, other areas raised within responses includedreference to the limited availability of gluten-free food in supermarkets; respondents statedthat products often have a poor shelf life or run out of stock. They indicated that smallersupermarkets do not have a wide range of free-from products, if at all. Respondents alsoindicated cost as a concern as they felt there was inconsistency about the amount of foodsome people are able to obtain on prescription. For those that pay for their NHSprescriptions per item, the cost is higher than in the supermarkets. However, a largemajority of respondents stated that if they are receiving multiple items on one prescriptionor are in receipt of a pre-paid prescription or free prescription it is cheaper on their budgetto receive the food on NHS prescription than to shop in the supermarkets or throughspecialist online manufacturers.

‘Quality of particular prescription products I use (mainly Juvela/Glutafin) is nutritionally

superior: fortified with calcium, iron and B vitamins and lower in fat and salt than common



28

472 respondents agreed or partially agreed that ‘Only staple foods like bread should beavailable on the NHS’ compared to 330 who did not. This shows that there may be awillingness from the public to reduce the types of products available on prescription.However from the responses received there needs to be a clear definition of what ‘a staplefood’ is.

‘I feel that maybe things such as biscuits could be dropped from prescriptions but these

should be replaced by more dietary useful breakfast cereals, especially oats for porridge as

these are versatile and can be used to make treats such as flapjacks or oatcakes if needed’.

‘A gluten free diet is the ONLY treatment for Coeliac Disease which is a lifelong condition ‐

it should be supported by NHS prescriptions for gluten free food. The NHS does not need to

prescribe more than the staples, but there should be careful definition of what these

staples are (I believe they are bread, pasta, flour including bread mix, plain biscuits and

crackers)’.



29

681 respondents agreed or partially agreed that ‘food should be available on prescriptionbut should be limited per patient to the amounts that have been recommended by CoeliacUK’, compared to 140 that did not. This indicates that there may be some willingnesswithin the community to reduce the amount of food that people are able to obtain onprescription. This was a strongly weighted suggestion throughout the open questions,detailed further in the report.

‘I totally agree that food should be available on prescription but limited per patient to the

amounts recommended by Coeliac UK. I feel that it is wrong for non coeliacs to be fed on

prescription just because there is a coeliac in the family. If the PCT is trying to reduce costs,

maybe a smaller range of basic foods only should be made available on prescription’.

Question 11: Please tell us more about your views.634 respondents answered this question. Cost and compliance were the strongestthemes in response to this question.

Cost194 respondents cited cost as a reason for maintaining a prescription service for glutenfree food. 112 of these felt that gluten-free food in supermarkets was not affordable. Thereasons for this are:

37 respondents identified that they receive free prescriptions either because theyare children and under 18 or because they are over 65 and pensioners. For those



30

people that pay for their prescriptions they use a pre-paid certificate to receive theirproducts.

The comments received show that the gluten-free products in supermarkets aresignificantly more expensive than their non gluten-free counterparts, which makeusing prescriptions more favourable.

There is wide concern that supermarket prices would further burden those peopleon low incomes, in receipt of benefits or on pensions.

They was a general feeling that implementing this policy would divide the rich fromthe poor and would impact significantly on those families where coeliac disease ishereditary.

There was wider concern about the impact that this would have on children from

families with low incomes

Respondents felt that supermarkets should address the cost of gluten-free food sothat it is priced in line with products that are not containing gluten.

In view of this 64 respondents felt that the NHS should only fund staple food (bread andflour) on prescription.

‘I am now a pensioner & it is even more important to receive gluton free food on

prescription as my income will reduce considerably in the future’.

‘I think many people who are entitled to free prescriptions would find it very difficult to

include gluten free foods in the weekly budget, especially if there is more than one family

member with the condition. I think it is extremely important that coeliacs are able to

obtain the basic foods on prescription to ensure that everyone is given equal opportunity

to manage the condition irrespective of income’.

Compliance 143 respondents felt that prescriptions help to maintain their compliance with the strictmanagement of a gluten-free diet and that it was their right to receive NHS prescriptionsfor gluten free food. The reasons for this were:

92 respondents felt that without prescriptions, due to the cost of supermarketgluten-free food, people will not adhere to the strict diet and that this will cost theNHS in the long term in managing other health related problems due to noncompliance.

32 respondents felt that gluten-free food is their medicine in the management ofthis disease.

21 respondents felt that receiving a prescription helped them to adhere to the strictmanagement of their diet

27 respondents felt that the NHS should be responsible for managing medicaldiets.

13 respondents felt that dietary management should be available on the NHS.



31

24 respondents had other co-morbidities and felt that the products available onprescription helped to manage their other health conditions.

‘Coeliac is

an

lifelong

disease

which

has

a substantial

effect

upon

sufferers.

Food is fundamental to its symptoms and its management and therefore the

NHS in the same way in which it provides appropriate medicines should also

provide appropriate gluten free foods to alleviate symptoms and assist patients

in managing the disease’.

‘If medication were the solution, that would be on prescription’.

‘Poorly controlled coeliac disease can lead to anaemia, low bone density, osteoporosis,

malnutrition and some forms of gut cancer, the treatment and management of which

would cost more to the NHS in the long term’.

‘Prevention is better than cure, if basic food is not available on prescription

likelihood is patients will not be able to follow the diet and fall ill and this will

only increase the NHS cost’.

In addition to these themes, other points were raised including:

19 comments relating to diagnosis, specifically related to the need for an increasein lifestyle and diet planning and support for the newly diagnosed.

52 comments about the availability of gluten-free food in supermarkets,

specifically: 22 that have limited access to supermarkets due to disability or

rural issues 21 raised that prescription products are not available in

supermarkets

Question 12: Please tell us if you have any further comments.86 respondents agree with the proposal to remove gluten-free prescriptions. The reasonsgiven were:

32 felt that it was not the responsibility of the NHS to provide food on prescription.

15 respondents felt that the money saved could be put to better use

17 respondents felt that the proposal to remove gluten-free food on prescriptionwas correct if there is sufficient support available for people with coeliac disease.

‘The trouble with these black and white questions is that there are no shades of

grey. My overriding feeling is that if the NHS doesn't provide a free food service

for others with dietary conditions then stop the funding gluten free now that

there are more products available BUT only if it is cost effective so to do’.

‘I think money saved by stopping prescription for coeliacs should be spent on

better educating doctors about the disease and also symptoms and treatment’.



32

‘I believe that better quality diet advice at the outset e.g. on‐line data plus easy

access to quality GF foods on prescription will vastly assist in people managing

a GF

diet

well.

It

is

now

easier

to

buy

reasonable

quality

GF

foods

but

these

are

very expensive and not always readily available’.

148 respondents disagreed with the proposals, and clearly stated that these proposalswould have detrimental effect on their wellbeing. The reasons given included:

43 respondents felt this proposal would encourage health inequalities and create apostcode lottery of services, discriminating against people with coeliac disease.

51 respondents felt this proposal would add an additional financial burden to theNHS in the future through non-compliance of the gluten-free diet

‘I am

a local

GP.

I strongly

disagree

with

the

proposals

to

take

gluten

free

foods

off prescription. Gluten free foods are more expensive, and patients on a tight

budget should not have to be punished for having a condition which potentially

has very serious implications for their health if they do not adhere to their diet.

Patients who are elderly or do not have access to a large superstore would find

it extremely difficult to access gluten free foods cheaply. I do find the system for

prescribing gluten free foods tedious as patients will often have long lists of

different products and it is often extremely time consuming wading through all

of the items on their prescription to identify which products they want. Perhaps

some kind of voucher system / central distributor would be the most efficient

way

forward.

Patients

who

have

a

condition

will

be

penalised

if

they

cannot

afford the much more expensive gluten free products and this could have major

impact on their health’.

‘The managers making this decision have to remember the age range of those

commonly diagnosed these days is much older . The cost of treating

osteoporosis if the diet is not adhered to should be taken into account .I am a

NHS Dietitian who is seeing a huge increase in daignosis and seing the

difficulties these patients face’.

‘It seems

very

discriminatory

to

focus

on

one

section

of

the

population

in

health

and cut something that people with long term chronic health problems rely on

long term for their well being and continuing health. It seems as if food is not

viewed as medicine and yet if in a GPs view food is needed, then it should be

viewed as essential as medicine. Gluten free food is exorbitantly expensive and

is very limited on supermarkets and not in the city, available at all in smaller

shops and Smaller supermarkets and so makes life very hard for a large

number of people in rural Oxfordshire, not in the city.



7. Correspondence

In addition to the survey responses the consultation received 89 letters of correspondenceabout this consultation. These have been broken down as follows:

7.1. Letters and emails from the public

65 letters and emails were received from members of the public. Within this OCCGalso received a petition with in excess of 60 signatures, requesting that Bread andFlour remain on prescription only.

In addition to those areas already addressed in the survey responses some otherkey themes were raised. There was general concern about the continuity of care

available for patients with coeliac disease along with the perceived inconsistentdiagnostic testing and support.

The points raised relate specifically to:

Diagnosis

o There is a general feeling that once diagnosed there is little supportavailable to help someone adjust their lifestyle to the change in diet.Respondents reported having difficulty accessing dieticians and felt thatGPs do not have sufficient training in nutrition to be able to support patientswith coeliac disease.

‘Many people with coeliac disease struggle to come to terms with the necessary dietary changes that come with diagnosis, but this is made far easier by having foods available

free on prescription’.

‘When my daughter was first diagnosed it was like a minefield. There is so much to change and think about, not just food. It is the way food is prepared, what utensils you use, cross contamination etc etc the list goes on. Whilst you are trying to get your head around all that you also have to think about food products. If the food is available on prescription (albeit basic items) that takes some pressures away whilst you are trying to deal with

everything else’.

Compliance

o Respondents felt that having a prescription helps them adhere to the diet.That as diet is the only medicine it should be provided by the NHS.

o Respondents felt that without the prescription service respondents wouldnot be able to maintain their gluten-free diet and would suffer ill health asresult.

o The NHS prescription service helps with obtaining annual check-ups withGPs, as patients no longer receive check-ups at the hospital. Thisspecifically relates to bone density tests.



34

o There was also strong feeling that as this is an auto-immune disease thenthe NHS has a responsibility to support and manage those individualsaffected.

‘I feel hospitals should still be checking coeliac patients instead of leaving this area on GPs’

‘Last year regular check ups at the coeliac clinic at the JR were stopped and I was told to go to my GP instead. My GP did not seem to be aware of this nor what was required of

them. I have become solely responsible for my own follow up on this condition now, made harder by the fact I'm asymptomatic’.

DieteticsRespondents raised concerns about the lack of support available from dieticians,especially at the point of the diagnosis.

‘Personal experience of Oxfordshire dieticians is very poor. Little assistance,suggested we read labels and even said we probably knew more than they did (in the

early stages of diagnosis!)’

‘I saw a Dietician 5 years ago when first diagnosed, nothing since, GPs don't bother I have to ask for Blood tests for calcium etc’

‘In my experience there is a lack of dieticians to help. I have waited without food for 4 days in hospital’.

7.2. Primary Care Clinicians – GPs & pharmacy12 responses were received from primary care clinicians. Whilst many of theresponses reflected the key themes already mentioned, some additional pointswere raised:

o There is concern about wastage of prescription products, anecdotal storiesof people over ordering, orders not being collected and going mouldy, andpeople feeding the whole family on prescription products.

o Concern has been raised that the Drug Tarriff would prevent this policy frombeing effective as GPs would continue to have a duty to prescribe despitepolicy guidance from the local NHS.

‘It will be hard for GPs to decline to provide all gluten-free foods: we are obliged by our terms of service to issue a prescription when requested & where there is a medical need’.

7.3. MPs

6 letters were received from local MPs. These were letters to the PCT Cluster onbehalf of their constituents, who were expressing concerns about the proposalsbeing made in this consultation.



35

7.4. Clinical and stakeholder responses

6 responses were received from secondary care clinicians, specificallyGastroenterology, Oxfordshire Local Pharmaceutical Committee and team

responses from the Departments of Nutrition and Dietetics at the Oxford UniversityHospital NHS Trust.

Professional and informed responses were received giving comprehensive and indepth clinical perspectives on the proposals. In each case a full assessment andbreakdown of concerns were raised which reflected the points made by the generalpublic. However in addition to this an in depth analysis of the proposals wereprovided and the main concerns raised are listed below:

o Concern related to the high risk associated with undetected or poorlymanaged hypertension

o The absence of QoF (Quality Outcome Framework) for Coeliac Disease in

primary careo The lack of supervision of the diet, eg: 2 – 3 year bone density test, weight

checks or blood count.o The prevalence of coeliac disease is higher in people with other auto-

immune disease such as Type 1 Diabeteso Gluten-free/Free From ranges in supermakets do not meet the European

standards for Codex wheat starch and are therefore not suitable forcoeliacs

o Independent research from Kings College, London which shows thatsupermarket breads and flours can cost 4 times more than their glutencontaining counterparts

o The regulation of gluten-free foods provided in the drug Tariff for use on a

FP10 in the community.o Discrimination on the grounds of nationality, age, disability or religion if the

number of gluten-free alternatives is so lowered and there are not realisticGluten-free options suitable for patient groups

In addition, the medical professionals have also provided alternative proposals forconsideration. These include:

o FP10 may not be the most appropriate route of supply – proposing a directorder scheme from the pharmacy with the patient allocated a budget (eitherfinancial or in food points).

o Limit the products available on prescription in line with Coeliac UK guidance

o Develop a cost effective scheme for the provision of gluten-free food basedon the pharmacy supply toolkit

o Address inappropriate prescribingo Ask patients to pay the equivalent price of gluten-containing equivalents to

their prescription products with the NHS meeting the differenceo Only provide gluten-free products for patients confirmed with Coeliac

Disease diagnosed by OGD and duodenal biopsyo Do not prescribe for patients with ‘gluten intolerance’o Only allow patients with annual blood test results to have prescriptions

Responses from other stakeholders who had an interest in this consultation includedCoeliac UK, The British Nutrition Association Ltd and the Gastroenterologist Specialist



36

Group of the British Dietetic Association. The concerns raised by these organisations / professional bodies reflected those highlighted throughout this consultation.

As key stakeholders they are keen to work with OCCG to find a way to support cost savingmeasures without having a detrimental affect on patients with coeliac disease.

8. Manufacturing and Supply Chain

65 respondents also raised concerns about supply chain issues and manufacturingcharges to the NHS. A high number of responses gave specific comments and concernsrelating to the manufacturing and supply of gluten-free food to the NHS, specifically:

That the local NHS should address charges and costs to them from manufacturers

That the local NHS should look at making savings through the pharmacy supplychain

That the Government should address labelling issues on products in supermarketsto make identification of gluten-free products more available and therefore in turnthis would help with cross contamination and tolerance levels for those with coeliacdisease.

That the local NHS should address the cost of gluten-free foods in supermarkets

‘If the manufacturers of all gluten free food were to bring their costs in-line with equivalent "normal" foods then this would remove the need for anyone to get gluten

free food on prescription’.

‘I believe the prescribing system and pharmaceutical companies are wholly to blame on this issue. The commercial pricing is ludicrous’.

‘The cost of foods in supermarkets is highly inflated. I believe this is because the companies producing prescribed products have overpriced their foods as they know

the NHS pay. The whole issue of pricing needs addressing as I'm sure it's not reflective of the products. The prescription product companies have a monopoly and set the

prices and we are going to suffer because nobody is challenging this. If they cost less the NHS may not be considering removing them’.



37

9. Proposals and alternative suggestions from the public

199 respondents gave individual suggestions and proposals for NHS Oxfordshire toconsider instead of the blanket proposal of removing gluten-free on prescription.

The strongest suggestions were:

Limit the type of products available on products.

39 felt that limiting the quantities of food available on prescription should beconsidered.

There was wide concern for the elderly, low income families, people on benefits and thevulnerable including children. Some of the suggestions offered were sympathetic to thisgroup of people, specifically:

41 said that the prescription service should be restricted to children only

‘It is the mum with a five-year newly diagnosed on a very low income with little knowledge who will be affected. She may well choose to ignore the medical advice

on the grounds of money. Is this then neglect? Is she making her condition and health worse? Yes......... This is not as simple as cost cutting it is a moral issue’.

13 felt that only staple foods should be available on NHS prescription and only tothose individuals on benefits. This was further supported by suggestions ofimplementing a voucher scheme, replacing the prescription with financial supportand/or having a means tested system.

‘An acceptable alternative may be to provide an allowance (e.g. in vouchers) towards the purchase of GF foods provided these could easily be sourced locally. This would

also enable food to be bought on demand and consumed fresh rather than receiving a large prescription order all at once and having to freeze 7 out of 8 fresh GF loaves

received, for example’.

Other suggestions included:

18 respondents felt that an increase in dietary support would be better thanprescriptions

‘More support should be given to adapt diet (rice,potatoes) to avoid problem foods rather than just replace with GF equivalents’

16 respondents felt that the charges imposed on the NHS by the manufacturers ofgluten-free food should be addressed and reduced.

‘The NHS could encourage competition between companies to provide competitive prices to the NHS’.

9 respondents felt that restricting prescriptions for the first 2 years after diagnosiswould be a way forward. This would help the individual at a point of diagnosis to



38

be supported so that at the end of the 2 years they would be independent,empowered and able to manage their own diet.

‘I believe that people should be offered food on prescription when they are first diagnosed, to help them get used to the transition. Then after a while the amount provided on prescription could be reduced. This condition is not self-induced and

the diet is not entered into voluntarily. It is vital that this diet is followed and I believe people need support’.

10. Key findings

10.1.1. Analysis of the findings resulted in the following themes emerging, as reasonswhy respondents do not support the proposals:

Cost and AffordabilityThroughout the responses a significant amount of concern was expressed about thenegative financial impact of the proposals on those that are elderly, on low incomes or inreceipt of benefits. There was also concern that children will be affected adversely as aresult.

AvailabilityA clear trend within the responses related to the availability of gluten-free products insupermarkets. Oxfordshire is primarily a rural county and gluten-free products are notconsistently available across the county. Small local shops often do not stock a widevariety of gluten-free products and can run out quicker than larger supermarkets.

It was raised that for those people that are disabled or do not have access to a car it isharder to reach larger supermarkets which offer a wider variety, as such they are unable toshop around to get products and find the prescription service via their local chemist to beconvenient.

Quality of gluten free foodThe quality of gluten free food was a strong theme. The perception of respondents wasthat prescription products are of a superior quality than those available in shops.Prescription products are perceived to have higher nutritional value, better taste, are atrusted product and guaranteed not to have been cross contaminated with non-gluten freeproducts. For some people that have other co-morbidities, it was felt that the productsavailable in the supermarkets are not of a sufficient nutritional standard to be able to meettheir dietary needs.

ComplianceRespondents felt very strongly that the availability of gluten free products on NHSprescription helps them to maintain their gluten-free diet. Due to the reasons shown above,respondents felt that without their NHS prescription they would struggle to meet their owndietary needs. Respondents felt that in the long term the withdrawal of funding for NHSprescriptions for gluten free food could cost the local NHS more as people could developfurther health problems as a result of not adhering to the gluten-free diet in themanagement of their coeliac disease.



39

Support A general perception from respondents was that there is currently little support available tocoeliacs to help them manage their diets. They felt that:

Access to dieticians is limited GPs often had a lack of knowledge about the condition and did not have the

expertise to offer nutritional advice.

Ongoing testing (e.g. bone density) to check the health of people with coeliacdisease was sporadic

SocialRespondents felt that having coeliac disease is socially depriving. There was a strongmessage that people with coeliac disease want to be socially accepted, through eatingfoods that are perceived as ‘normal’. This was especially important for children. It was feltthat for children with coeliac disease to eat ‘normal’ foods, like sandwiches and cake,enabled them to participate in ‘normal’ childhood activities.

RestrictionsSome respondents indicated they would be willing to accept a restricted availability ofgluten free food on NHS prescription; e.g. restriction of NHS prescription to flour and breadand to limit the units of items.

10.1.2. The following themes relate to those individuals that agree with the proposals;however it should be noted that for a significant number of respondents agreeingwith the proposals came with the following caveats:

3. Agree – if cost effective4. Agree – if sufficient alternative support is offered to patients

ChoiceThere was a general feeling for those respondents agreeing with the proposals thatmanaging a gluten-free diet should be encouraged to include encouraging patient choice.Individuals ‘choose’ what to eat and therefore they need to take responsibility for their dietsas a dependency culture has developed. For some people maintaining a gluten-free dietis affordable without prescription and for others they manage the diet without using gluten-free substitutes. It is also clear that for those that manage without the prescription they areable to do this as they have the skills to cook their food from scratch and can afford toshop around for their products.

The role of the NHSSome respondents felt that it is not the role of the NHS to provide food for people and that

the money saved could be used for other NHS services.

11. Next steps

The report will be presented to the Oxfordshire Clinical Commissioning Board with theoptions for decision in August 2012.

This consultation report will be made available by electronic or hard copy to all those thatparticipated in the consultation.



40

12. Thanks

Many thanks to all those individuals and organisations who took part in this consultation.



41

13. Supporting information

Glossary

CCG - Clinical Commissioning Group

Facebook - Social networking website

Intranet - A private computer network open to users working within an organisationto share information, news and documents

NHS - National Health Service

PCT - Primary Care Trust

Twitter - Twitter is a social networking tool aimed at enabling its users to exchangeup-to-the-minute news and opinions on specific topics.

Talking Health - NHS Oxfordshire’s consultation and engagement area on ourpublic website (see https://consult.oxfordshirepct.nhs.uk )



42

14. Appendix 1 –Survey

Questionnaire

Adults & children with Coeliac Disease – Prescriptions for Food

IntroductionWe want to talk to patients and local people about our proposals to stop prescribing freefood products for people with coeliac disease.

At the moment in Oxfordshire we spend £350,000 on prescriptions for gluten freefoodstuffs for people who have an allergy to gluten known as coeliac disease. We knowthat since the decision to prescribe these foods was made there has been a considerablechange to the availability of gluten-free food in supermarkets.

Prescriptions for food are not available to other groups who have foodintolerance

There is a wide range of gluten free foods now available in supermarkets;

There are several sources of carbohydrates that are not gluten-based;

The prescriptions also include items that for many are not a part of their

‘normal’ diet such as pizza bases, biscuits and cake

We have therefore identified that prescriptions for gluten free products are not necessaryto enable those with coeliac disease to eat a healthy and balanced diet.Oxfordshire Clinical Commissioning Group proposes to save £350,000 by no longerfunding prescriptions for gluten free products for people with coeliac disease.The savings made will be available for reinvestment and we will investigate contributingsome of the savings made to funding an increase in community dietician services so thataccess to advice and support is provided in a fair and comprehensive way.

If you would like to respond online please go to http://bit.ly/xUfNWB



43

Questions

1) NHS Oxfordshire has identified the provision of gluten-free food onprescription for people with coeliac disease as one of the services that we nolonger wish to provide. Please could you tell us whether you (or someone youcare for) receive gluten0free food on prescription or if you (or someone youcare for) has direct experience (within the past year) of the service.

Yes

No

2) If you have answered ‘Yes’ in question 1, please could you tell us whether

you are:

Someone with coeliac disease

a parent of someone with coeliac disease

a carer of someone with coeliac disease

a medical professional

other

If you have ticked other, please could you tell us more:

3) If you have responded ‘no’ please tell us more about your interest. (Please circle your response)

I / (or someone I care for) have coeliac disease but do not request gluten-free food

on prescriptions Yes / no

I / (or someone I care for) have other health issues where food management is

important Yes / no

I have an interest in NHS services Yes / no

I represent an organisation with an interest in this service Yes / no

Other Yes / No

If you have ticked other, please tell us more:



44

4) If you have answered: ‘I (or someone I care for) have other health issueswhere food management is important.’ Please tell us which of the followingapply to you:

Diabetes Chrohn’s Disease Irritable Bowel Syndrome (IBS) Colitis Lactose Intolerance Pancreatitis Stroke Dysphagia (Swallowing difficulty) High Cholesterol Cancer Heart Disease Other

If you have ticked other, please tell us more:

5) If you are a person with Coeliac Disease or you care for someone withCoeliac Disease and you or they do not request or receive prescriptions forfood, please could you indicate which if any of the following reasons for this

apply. Mark as many as are true.:

not aware that could get food on prescription prefer to shop around and not be dependent on prescriptions The gluten free food on prescription is limited in its variety Using a prescription is inconvenient to lifestyle GP won’t prescribe gluten-free food Pharmacy is not efficient in their ordering of gluten-free food don’t agree with a service where gluten-free foods are available on NHS prescriptionfor children and adults The food on prescription is not what I/ they eat I / they have tried the food but don’t like it

I / they prefer the choice available in supermarkets I / they are willing to pay for the products I/they like I / they are not strictly following a gluten-free lifestyle at the moment

Other

Please could you tell us more about your reasons for not receiving food onprescription



45

6). If you are a person with coeliac disease or you care for someone withcoeliac disease and you or they do receive food on prescription please couldyou indicate why you or they use this service? Please mark all of those that are true.

It is my right as a person with coeliac disease To ensure that I /they have regular check-ups with my GP I (or the person I care for) are on a low income Gluten-free food in supermarkets is expensive I (or the person I care for) have other health problems as a result of Coeliac Diseaseand believe that prescribed products have a medical benefit above supermarketproducts Choice of Gluten-free food is limited where I live I do not have access to transport to shop around I (or the person I care for) am eligible for free prescriptions

Other

Please could you tell us more about your reasons for why you or the person you carefor has chosen to use this service:



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7) There are a variety of gluten free brands and services available insupermarkets and on prescription, please could you indicate which of thefollowing brands you have used and which you prefer:

Brand I use this I prefer this



47



48

Please could you tell us if there are any other brands that you use?

8) Please could you tell us why you prefer the brands you have chosen.



9) Please tell us whether or not you agree with the following statements.

Reason I completely

agree

I partially agree I do not agree

Removing this service will make it harder to follow a gluten free lifestyle and I believe this may increase the risk of complications associated with exposure to gluten (such as damage to the gut, malabsorption, and failure to thrive in

children) Removing this service will make little difference, people will adapt and continue to follow a gluten-free diet.Food should be available on the NHS when a person has a health need .Where the only treatment for a condition

is strict adherence to a diet, I believe that my GP should have the option to treat with an NHS prescription for food.Food should not be provided on the NHS Gluten-free products are more expensive Only staple foods, like bread should be

available on the NHS Food should be available on prescription but should be limited per patient to the amounts that have been recommended by Coeliac UK,( a national body for coeliac disease).Gluten-free products are



50

not readily available to me to buy.

Information about dietary management should be available on the NHS.There is enough information already (through consultation with Dieticians and GPs), people should manage their own diets.

Please tell us more about your views.

10) Thank you for answering the questionnaire, if you have any further commentsplease tell us here

Please return this questionnaire by Friday 3rd February 2012 to: Communications & EngagementFREEPOST RRRKBZBTASXUNHS Oxfordshire, Jubilee House, 5510 John Smith DriveOxford Business Park South, OXFORD OX4 2LH

For more information:Phone: 01865 334638 Email: [email protected] Oxfordshire residents to comment on line visit: http://bit.ly/xUfNWB You will be asked to register before you can get all the information.Appendix 3 Background information for the Public



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15. Appendix 2: Background information provided in the consultation

Adults and children with coeliac disease –prescriptions for gluten-free food

Background

NHS organisations have always had to set funding priorities because of the high level ofdemand for health care. Despite a 2.8% increase in funding for the NHS in Oxfordshire for

2012-13, there are more financial pressures than ever because:

the population of Oxfordshire is growing, and more people are living on into old age;

advances in technology mean that new (and generally more costly) medicines andtreatments are becoming available all the time;

patients and the public have higher expectations of care and treatment by the NHS;

the costs of items such as medicines, food and petrol are increasing – inflationimpacts on hospitals and other health care providers, as it does on all of us.

This difficult financial situation affects health care services across England, not justOxfordshire, and the Department of Health has initiated a programme of work called

Quality, Innovation, Productivity and Prevention (QIPP). This programme aims to findways the NHS can protect and promote high quality care for patients while releasingsavings for reinvestment in NHS services. Local QIPP projects include:

providing health care services in the community to reduce hospital admissions;

setting up services as ‘one-stop-shops’ so that patients need only one visit to hospital,rather than having to re-attend for separate appointments to see different specialists;

providing ‘telehealth’ services so that people with long term conditions can bettersupport themselves in their own homes.

As well as setting up a number of QIPP projects, the ongoing financial pressures meanthat NHS Oxfordshire is now reviewing the funding of treatments that previously have been

provided as a matter of routine. These reviews are essential if we are to maintain highquality, local and sustainable NHS health services for the future.

One of the services we are reviewing is the provision of NHS prescriptions for gluten-freefoods. The reasons for the review are summarised below.

NHS prescriptions for gluten free foods

In Oxfordshire we spend £350,000 each year on prescriptions for gluten-free foods forpeople with coeliac disease (see box below for information about this condition ). Twenty orthirty years ago, only a small range of ‘gluten-free’ foods were available and these wererelatively expensive. To enable people to manage their disease, GPs were able to provide



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abdominal pain, diarrhea, nausea, vomiting, bloating weight loss in adults or, in children, failure to grow at the expected rate malnutrition, deficiencies in iron, vitamin B12 and folic acid tiredness, headaches skin rash mouth ulcers brittle bones (osteoporosis), tooth enamel problems

The disease affects approximately 1 in every 100 people in the UK. Women are two tothree times more likely to develop coeliac disease than men. Cases of coeliac diseasehave been diagnosed in people of all ages.

Coeliac disease is controlled by excluding foods that contain gluten from the diet. Thereare no medicines available to treat the condition, and it cannot be cured. Adults andchildren with confirmed coeliac disease must give up eating all sources of gluten for life.



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16. Appendix 3: Statistical Data relating to spend on Gluten-freefood in Oxfordshire, as supplied to local media & Coeliac UK

Gluten free foods - prescribed between December 2010 and November2011

BNF NameTotalItems

Total ActCost

Juvela_G/F Mix Wte 1,373 £38,087.13Juvela_G/F Fresh Loaf Wte (Cut) 1,082 £30,092.12Glutafin Select_G/F Fresh Loaf Wte (Cut) 985 £24,432.96

Juvela_G/F Fibre Loaf Brown (Cut) 743 £14,666.83Juvela_G/F Loaf Wte (Cut) 524 £10,974.30Juvela_G/F Bread Roll Wte 513 £10,951.81Juvela_G/F Fibre Mix 460 £10,214.48Glutafin_G/F W/F Spiral 822 £9,091.15Glutafin Select_G/F Fresh Loaf Brown(Cut 381 £8,902.69Juvela_G/F Pizza Base 678 £8,408.21Juvela_G/F Fresh Fibre Loaf (Cut) 392 £8,123.32Glutafin_G/F W/F Pizza Base 624 £6,593.87Genius_G/F W/F Brown Bread 421 £6,481.12Genius_G/F W/F Wte Bread 457 £6,188.02Glutafin_G/F W/F Macaroni Penne 409 £4,637.47

Glutafin Select_G/F Wte Flour Mix 389 £4,454.01Glutafin_G/F W/F Wte Bread (Cut) 233 £4,347.49Glutafin_G/F W/F Fibre Roll 280 £4,265.08Glutafin_G/F W/F Cracker 571 £4,222.16Glutafin_G/F W/F Spaghetti 431 £4,196.89Juvela_G/F Fibre Bread Roll P/Bke 319 £4,189.11Glutafin_G/F W/F Wte Mix 350 £4,085.78Juvela_G/F W/F Fusilli 386 £3,870.07Juvela_G/F Fresh Roll Wte 168 £3,831.25D/Spec_G/F W/F Brown M/Grn Loaf (Cut) 251 £3,753.45Juvela_G/F Fibre Bread Roll 254 £3,716.13Glutafin_G/F W/F Diges Bisc 831 £3,623.82

Glutafin Select_G/F Loaf Wte (Cut) 199 £3,564.69Glutafin Select_G/F Bread Roll Wte P/Bke 269 £3,191.45Glutafin Select_G/F Bread Mix 154 £3,165.75D/Spec_G/F W/F Wte Loaf (Cut) 211 £3,123.18Juvela_G/F Crispbread 284 £3,002.87Juvela_G/F Bread Roll Wte P/Bke 198 £2,844.37Juvela_G/F W/F Harvest Mix 160 £2,695.96Glutafin_G/F W/F Wte Bread Roll 193 £2,583.05Lifestyle_G/F Bread Wte (Cut) 145 £2,459.38Juvela_G/F W/F Spaghetti 273 £2,395.19Lifestyle_G/F Bread Brown (Cut) 135 £2,277.12



55

Glutafin_G/F W/F Pasta Shell 235 £2,215.86Glutafin_G/F W/F Baguette 247 £2,193.00Glutafin_G/F W/F H/Fbre Cracker 356 £2,113.77

Glutafin_G/F W/F Shortbread Bisc 586 £2,097.25Juvela_G/F Tea Bisc 364 £2,073.19Glutafin Select_G/F Roll Wte Long P/Bke 155 £2,037.62Juvela_G/F Fibre Loaf Brown (Ucut) 77 £1,839.22Glutafin_G/F W/F Bread Mix 118 £1,739.24Livwell_G/F W/F Flat Bread 161 £1,727.13Glutafin Select_G/F Fibre Bread Mix 106 £1,726.75Glutafin_G/F W/F Bisc (Plain) 149 £1,715.86Juvela_G/F Diges Bisc 342 £1,622.77Juvela_G/F Loaf Wte (Ucut) 78 £1,583.89Glutafin Select_G/F Cake Mix 199 £1,580.85Glutafin Select_G/F Bread Roll Wte 131 £1,494.55

Glutafin_G/F W/F Tea Bisc 341 £1,489.29Glutafin Select_G/F Seeded Loaf 106 £1,475.61Juvela_G/F Loaf P/Bke 99 £1,449.83Glutafin_G/F W/F Fibre Bread (Cut) 90 £1,439.24Glutafin_G/F W/F Tagliatelle Nest 207 £1,349.86Glutafin_G/F W/F Cake Mix 159 £1,320.51Glutafin_G/F W/F Fibre Mix 112 £1,313.80Glutafin Select_G/F Fibre Mix 94 £1,307.46Glutafin_G/F W/F Crisp Bread 192 £1,286.08Juvela_G/F W/F Macaroni 151 £1,185.73Juvela_G/F W/F Fibre Penne 138 £1,161.48Glutafin Select_G/F Pastry Mix 127 £1,129.77

Glutafin_G/F W/F Sweet Bisc 263 £1,127.65Lifestyle_G/F H/Fbre Bread Brown (Cut) 83 £1,120.73Glutafin Select_G/F Fibre Loaf Brown(Cut 80 £1,060.43Juvela_G/F W/F Tagliatelle 192 £1,000.35Glutafin Select_G/F Fibre Roll Brown 86 £959.18Juvela_G/F Savoury Bisc 169 £950.06Ener-G_G/F W/F Rice Bread Wte 44 £933.38D/Spec_G/F W/F Pizza Base 105 £888.43Glutafin_G/F W/F Mini Cracker 160 £844.45Glutafin_G/F W/F Lasagne 161 £836.95D/Spec_G/F W/F Penne 145 £744.52Livwell_G/F W/F Wte Bread (Cut) 49 £731.11

D/Spec_G/F W/F Fusilli 140 £714.94Juvela_G/F Fibre Loaf P/Bke 81 £699.69Juvela_G/F W/F Lasagne 155 £657.39Barkat_G/F W/F Rice Bread Wte 26 £650.95D/Spec_G/F W/F Wte Bread Mix 39 £618.17Barkat_G/F W/F Flour Mix 41 £614.25Juvela_G/F Fresh Fibre Roll 32 £600.25Glutafin_G/F W/F Pastry Mix 74 £571.44Lifestyle_G/F Bread Roll Brown 37 £538.59D/Spec_G/F W/F Wte M/Grn Loaf (Cut) 40 £529.48Glutafin_G/F W/F Savoury Bisc 101 £511.07



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Lifestyle_G/F Bread Roll Wte 49 £479.49Rizopia_G/F W/F Brown Rice Pasta Fusilli 103 £463.04D/Spec_G/F W/F Cracker Bread 83 £444.73

Orgran_G/F Self Raising Flour 97 £428.30Lifestyle_G/F Bread Wte (Ucut) 35 £424.63Lifestyle_G/F Bread Brown (Ucut) 29 £385.35Juvela_G/F Sweet Bisc 121 £369.40Tritamyl_G/F Flour Mix 20 £353.13Ener-G_G/F W/F Rice Bread Brown 19 £350.49Wellfoods_G/F W/F Loaf (Cut) 19 £324.14Barkat_G/F W/F Bread Rolls P/Bke 24 £320.02Livwell_G/F W/F Tear Drop Flat Bread 56 £319.62Barkat_G/F W/F Wholemeal Bread Sliced 12 £316.50Glutafin_G/F W/F Fibre Bread Mix 32 £299.90Ener-G_G/F W/F Six Flour Loaf 12 £297.41

Barkat_G/F W/F Rice Bread Brown 21 £279.33Glutafin_G/F W/F Savoury Short Bisc 60 £276.16Wellfoods_G/F W/F Roll 28 £259.61D/Spec_G/F W/F Wte Cake Mix 43 £254.19Lifestyle_G/F H/Fbre Bread Brown (Uncut) 21 £252.52Ener-G_G/F W/F Vanilla Cookie 29 £243.82Promin_G/F L/P Burger Mix 17 £227.20Barkat_G/F W/F Bread-Mix Wte 20 £198.30D/Spec_G/F W/F Spaghetti 42 £197.02Livwell_G/F W/F Toasting Bread Bun 54 £194.97Barkat_G/F W/F Cornflakes 24 £186.59Livwell_G/F W/F Square Dinner Roll P/Bke 39 £176.45

BiAlimenta_G/F Potato Pasta Gnocchi 7 £170.12Barkat_G/F W/F Cracker 21 £155.38Glutafin_G/F W/F Bourbon Bisc 43 £143.80Barkat_G/F W/F Animal Shapes 15 £130.70Barkat_G/F W/F Spiral 20 £125.90Ultra_G/F Pizza Base 28 £125.41Barkat_G/F W/F Matzo Cracker 20 £117.78Proceli_G/F W/F Pizza Base 22 £117.60Rizopia_G/F W/F Brown Rice Pasta Spaghet 33 £116.95Proceli_G/F W/F Iced Bread Bun 25 £110.68Proceli_G/F W/F Wte Plain Flour 10 £110.25Lifestyle_G/F H/Fbre Bread Roll 15 £107.01

Barkat_G/F W/F Porridge 16 £104.73Juvela_G/F W/F Harvest Fibre Mix 10 £102.34Wellfoods_G/F W/F Pizza Base 5 £99.13Orgran_G/F W/F O/B Animal Cookie Choc 14 £98.35Proceli_G/F W/F Pita Flat Bread P/Bke 9 £96.69Innovative Soln_Pure G/FW/F BlendedFlour 21 £96.33Rizopia_G/F W/F Brown Rice Pasta Penne 31 £94.01Livwell_G/F W/F Wte Bread Roll 20 £91.83Finax_G/F Fibre Bread Mix 3 £91.46Barkat_G/F W/F Spaghetti 11 £90.56Proceli_G/F W/F Baguette P/Bke 15 £90.03



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Orgran_G/F W/F Rice & Millet Spiral 18 £89.76Rizopia_G/F W/F Brown Rice Pasta Lasagne 23 £86.02Livwell_G/F W/F Circle Bread Roll P/Bke 23 £85.89

Proceli_G/F W/F Lunch Roll Wte 11 £84.44Ener-G_G/F W/F Rice Pasta Lasagna 18 £81.13Orgran_G/F W/F Buckwheat Spiral 12 £80.65Barkat_G/F W/F Diges Bisc 23 £76.42Barkat_G/F W/F Coffee Bisc 14 £75.64Ener-G_G/F W/F Dinner Roll 18 £71.28Promin_G/F L/P Imitat Rice Pud (Sbery) 4 £71.26D/Spec_G/F W/F Wte Mix 12 £71.20Orgran_G/F All Purpose Plain Flour 21 £69.23Barkat_G/F W/F Brown Rice Pizza Crust 13 £68.67Proceli_G/F W/F Roll Wte Long P/Bke 16 £68.46Livwell_G/F W/F Wte Baguette 9 £67.04

Barkat_G/F W/F Bread Wte P/Bke (Cut) 2 £66.37Wellfoods_G/F W/F Burger Bun 10 £65.82Lifestyle_G/F Battenburg Cake 4 £63.64Juvela_G/F L/P Pizza Base 2 £63.02G/F /W/F_Mix 2 £61.23Barkat_G/F W/F Baguette P/Bke 8 £59.96Il Pane di Anna_G/F W/F Cake Mix 1 £58.09Barkat_G/F W/F Buckwheat Spirals 9 £57.92Loprofin_G/F L/P Spiral 6 £55.25PK_G/F W/F L/P Crispbread 5 £53.80Wellfoods_G/F W/F Loaf (Uncut) 2 £53.63Juvela_G/F L/P Loaf Wte (Cut) 1 £53.28

PK_G/F W/F L/P Cookie (3 Flav) 12 £52.02G/F /W/F_Bread 4 £50.98Innovative Soln_PureG/FW/FBrownRiceFlour 21 £45.93Orgran_G/F W/F Brown Rice Spiral 1 £44.62Glutafin_G/F W/F Cust Crm Bisc 8 £44.53Promin_G/F L/P Pasta+ Cheese&Brocc Sauce 3 £43.05Proceli_G/F W/F Fusilli 10 £41.09Ener-G_G/F W/F Rice Pasta Shell Sml 8 £40.29Barkat_G/F W/F Macaroni 6 £40.25Orgran_G/F W/F Bread Mix 5 £40.15Orgran_G/F W/F Pizza & Pastry Mix 11 £38.87G/F /W/F_Bisc 7 £38.36

Heron_G/F Organ Hi Fibre Bread Mix 3 £38.34Proceli_G/F W/F Puntini 6 £38.24Innovative Soln_PureG/FW/FBrownTeffFlour 7 £37.41Orgran_G/F W/F R+C Essent Fibre Spiral 5 £36.45Glutafin Select_G/F Loaf Wte P/Bke(Ucut) 3 £35.56Ener-G_G/F W/F Tapioca Bread 8 £35.31Barkat_G/F W/F Tagliatelle 6 £35.28Schar_G/F W/F Bread Roll 4 £32.62Promin_G/F L/P Imitation Rice 3 £30.81Schar_G/F W/F Pizza Base 3 £29.73PK_G/F W/F L/P Jelly Mix Dessert(2 Flav) 2 £27.45



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Proceli_G/F W/F Capellini ShortSpaghetti 5 £27.33Barkat_G/F W/F Wte Rice Pizza Crust 6 £25.75Ultra_G/F W/F Plain Cracker 11 £24.68

Promin_G/F L/P Cous Cous Pasta 2 £24.65Promin_G/F L/P Shell 1 £24.62Promin_G/F L/P Spiral 4 £24.53Ener-G_G/F W/F Rice Pasta Spaghetti 6 £24.41Innovative Soln_Pure G/F W/F PotatoFlour 10 £23.53Orgran_G/F W/F Rice & Corn Lasagne 7 £23.29Heron_G/F W/F Organ Hi Fibre Bread Mix 3 £23.04Ultra_G/F Baguette 6 £22.86Ultra_G/F W/F Cheese Cracker 10 £22.63Innovative Soln_PureG/F W/F WteRiceFlour 9 £22.24Livwell_G/F W/F Garlic & Cori Naan Bread 4 £22.24Ener-G_G/F W/F Rice Pasta Shell 1 £22.04

Innovative Soln_PureG/F W/F TapiocaFlour 9 £22.02Allergycare_G/F W/F Brown Bread 2 £20.85Livwell_G/F W/F M/Grain Bread (Cut) 1 £20.76Innovative Soln_PureG/F W/F WteTeffFlour 5 £20.73Barkat_G/F W/F Alphabet Shapes Pasta 1 £20.09Ener-G_G/F W/F Wte Long Roll 3 £19.08Schar_G/F W/F Bread Mix B 1 £18.86Tritamyl_G/F Bread Mix Brown 3 £18.34Loprofin_G/F L/P Bread Roll Wte P/Bke 2 £17.48Juvela_G/F L/P Mix 2 £17.12Ener-G_G/F W/F Rice Pasta Macaroni 4 £16.60Orgran_G/F W/F Rice & Corn Spiral 3 £15.71

Lifestyle_G/F W/F Choc Chip Cookie 2 £15.65Heron_G/F W/F Organ Bread & Cake Mix 2 £15.32Barkat_G/F W/F Buckwheat Penne 2 £15.10Proceli_G/F W/F Sandwich Bread 2 £15.03Loprofin_G/F L/P Choc Chip Cookie 1 £14.69Barkat_G/F W/F Choc Muffin Mix 4 £14.58Orgran_G/F W/F All Purp Pastry Mix 5 £13.80Ultra_G/F Sweet Bisc 4 £13.63Orgran_G/F W/F Rice&Corn SpaghettiNoodle 5 £13.54Ener-G_G/F W/F Seattle H/Burg Roll Brown 4 £12.89Promin_G/F L/P Alphabet 1 £11.97Lifestyle_G/F W/F Choc Florentine 2 £11.49

Orgran_G/F W/F Muffin Mix (2 Flav) 1 £11.46Ener-G_G/F W/F Pizza Base 3 £11.38Orgran_G/F W/F Corn & Veg Shell 2 £11.21Orgran_G/F W/F Corn Spiral 2 £11.21Juvela_G/F L/P Cookie (Choc Chip) 1 £11.14Loprofin_G/F L/P Crm Filled Wafer (Flav) 2 £10.79Lifestyle_G/F W/F Butter Bisc 2 £10.45BiAlimenta_G/F Potato Perle Di Gnocchi 1 £10.35Ener-G_G/F W/F Seattle Brown Loaf 2 £10.02Proceli_G/F W/F Lge Pizza Base 1 £9.58Loprofin_G/F L/P Macaroni Elbow 1 £8.85



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Harifen_G/F L/P Wte Chip Cookie 3 £8.39Loprofin_G/F L/P Loaf Wte (Cut) 1 £8.33Proceli_G/F W/F Macaroni Penne 2 £8.22

Juvela_G/F L/P Loaf Wte (Ucut) 1 £8.03Heron_G/F Organ Bread Mix 1 £7.68Harifen_G/F L/P Cracker Toast 2 £7.66Ener-G_G/F W/F Brown Rice Pasta Lasagna 2 £7.40Orgran_G/F W/F Spiral In Tomato Sauce 1 £7.26Ener-G_G/F W/F Wte Round Roll 3 £7.23Orgran_G/F W/F O/B Animal Cookie Vanilla 3 £7.09Livwell_G/F W/F English Muffin 2 £6.98Schar_G/F W/F Crispbread 1 £6.98Ener-G_G/F W/F Seattle H/Dog Roll Brown 2 £6.44Promin_G/F L/P Spaghetti 1 £6.00Pasticely_G/F Pizza Base 1 £5.54

Promin_G/F L/P Imitat Rice Pud (Orig) 1 £5.51Ultra_G/F W/F Spaghetti 2 £5.50Ultra_G/F W/F Penne 1 £5.47BiAlimenta_G/F Pasta Tubetti 1 £5.46Orgran_G/F W/F Gravy Mix (Vegetarian) 1 £5.41Orgran_G/F W/F Gluten Substitute 2 £5.39Juvela_G/F W/F Fibre Linguine 1 £5.36Loprofin_G/F L/P Bread Roll Wte 1 £5.19Tritamyl_G/F Self-Raising Flour 1 £5.19G/F_Bisc 1 £5.10Ultra_G/F Crackerbread 3 £4.99Barkat_G/F W/F M/Grn Bread 1 £4.92

Il Pane di Anna_G/F W/F Pizza Base Mix 1 £4.87Bi-Aglut_G/F Fusilli 1 £4.85Barkat_G/F W/F Organ Cornflakes 1 £4.62Orgran_G/F W/F Rice & Corn Macaroni 1 £4.49Orgran_G/F W/F Shortbread Heart 1 £4.49PK_Aminex G/F L/P Rusk 1 £4.33Proceli_G/F W/F Hot Dog Roll Wte P/Bke 2 £4.19Glebe Farm_G/F W/F Wte Bread & Pizza Mix 2 £3.73Loprofin_G/F L/P Sweet Bisc 1 £3.72Schar_G/F W/F Lasagne 1 £3.30Schar_G/F W/F Penne 1 £3.30Schar_G/F W/F Spaghetti 1 £3.30

Juvela_G/F W/FSpecial Flakes Red Berries 1 £3.18Loprofin_G/F L/P Tagliatelle 1 £2.97Lifestyle_G/F W/F Choc Cake Bar + Flake 1 £2.89Orgran_G/F W/F Alt Grain W/Meal BreadMix 1 £2.89Ultra_G/F W/F Fusilli 1 £2.75Lifestyle_G/F Carrot Cake 1 £2.63Lifestyle_G/F Ginger Snap Bisc 1 £2.63Lifestyle_G/F W/F Blueberry Muffin 1 £2.63Lifestyle_G/F W/F Cherry Muffin 1 £2.63Lifestyle_G/F W/F Shortbread Bisc 1 £2.63Orgran_G/F W/F All Purpose Rice Crumb 1 £2.58



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Pasticely_G/F Rustic Roll Wte P/Bke 1 £2.23Barkat_G/F W/F Sage & Onion Stuffing Mix 1 £2.10Glutano_G/F W/F Cracker 1 £2.06

Proceli_G/F W/F Dinner Roll Wte P/Bke 1 £2.01Glebe Farm_G/F W/F Brown Bread Mix 1 £1.87

26,172 £354,074.79

Based on the Selections:

December 2010,January 2011,February 2011,March 2011,April 2011,May 2011,

June 2011,July 2011,August 2011,September 2011,October 2011,

Nov-11for Financial Year at Summary Level SelectedPeriods

Date produced 31 Jan 2012



62

The consultation received a significant amount of comprehensive feedback about theproposal. Due to the number of responses received and the lengthy content, they have notall been included in this report. However below is an example of the type of response

received.

Consent has been given by this individual to include their feedback in this report.

I was 8 months old when I was diagnosed and growing up as a ceoliacs disease was hard,I was the third child of four and neither of my parents worked. Money was very tight andso, as a consequence, my dietary needs often got pushed to the back of the priority list.Our diets on the whole were very unhealthy anyway, consisting of fried foods & chips mostof the time. Because my parents could not afford the gluten free sausages from thebutchers and there were no cheap alternatives available, I had no choice but to eat whatwas given to me. With our roast dinners we would all be served the same gravy granulesand stuffing, all containing wheat gluten.

My mum would often forget to order my flour & bread so I would go long periods of timewithout them in the house, I remember feeling very aware of how restricted my diet waswithout them. But when I did have them it was such a relief to eat something similar to allthe other children around me.Outside of the house is even worse for a child with coeliacs disease, I was never allowedto my friends birthdays parties in case I ate something that was bad for me (a bit of acontradiction I know but they were her reasons I’m told) When I was allowed to familyparties I wasn’t catered for and was made to feel like a nuisance for being either expensiveor fussy. When I did have a sandwich at someone’s house with my bread it was a veryembarrassing because it crumbles badly which meant mess everywhere, I was forever toldthat I ate messily and even my Nan didn’t like me eating in her house because of all thecrumbs.

As a result of my upbringing and other people’s attitude towards my condition, I had norespect for the severity of my illness and I also became extremely scared about eating infront of people. Needless to say as a teenager, I often went days without eating properly,maybe some polo’s at school & possibly a sweet or two at home to keep me going. Moreoften than not, when I did eat something substantial it wasn’t gluten free, if I wantedspaghetti for my free school meal had it, seeing as my parents had no obvious care aboutit, why should I? They were my thoughts at the time anyway; this obviously did me nogood at all. It got so bad that when I started my first job at 15 I passed out whilst serving acustomer, this was down to two things: I hadn’t eaten properly for several days andconstantly cheating my diet was taking its toll on my body.By this point my mum had completely stopped ordering my flour & breads so my diet wasreally very bad and when I was 16 she told me that I would not get a prescription once I

left school, I now know this to be untrue and the only difference is that there is a fee to payif you are no longer in full time education.I moved out at 17 and now that I was in charge of my own diet, I started to fall in love withfood. I slowly got used to eating in front of people. As I made met more people it was reallyreassuring to find that they took my dietary needs seriously, time and again they would putthemselves out to make a meal that had no gluten. A very different attitude to what I hadseen as a child growing up.At 23 I had my second son, he was a very sickly baby with terrible skin problems, losing allof his hair at one point. We tried him on different milks & in the end settled with him onAptamil, although he still had terrible bouts of sickness & diarrhea. With the worries of myfirst son being a coeliac passing with no bad signs, I proceeded to wean my second withno real concerns about him being a coeliac either. I felt very passionate about food and



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having a healthy diet by this point, so both my children had homemade foods from day oneof weaning and absolutely no processed foods or sweets. After about 2 months of eatingsolid foods he was eating wheetabix for breakfast, bread for lunch and home cooked meal

for dinner. More often than not rice or potatoes, but occasionally pasta as my husband andfirst son are not coeliacs. By the time he was 9 months old he had stopped gaining weightand had sickness and diarrhea a lot, I mentioned coeliacs to my health visitor but sheassured me this was not the case and advised me to try giving him fattier meals and comeback in 6 weeks to weigh him again. He had gained weight but was still underweight for hisage, I told the person standing in for my health visitor that my husband was really worriedhe might be a coeliac but she told me I was being paranoid and that some children aresickly and not all are like their older siblings. I went away feeling like a bad mum, that I wasnot feeding him well enough & that I was trying to blame this on my own disease. Shortlyafter this was his first birthday, my opinion on unhealthy foods for children did not changeon such occasions. So served up was, fruit, jelly, veg sticks, bread sticks, dips, smallsnack biscuits & a birthday cake. I always make the cakes so this was gluten free, mainly

so that I could try some! He absolutely loved the savoury biscuits & bread sticks, but lateron that day he had the most horrific diarrhea, with the same odd smell & pale colour asusual ( I now know this is a typical coeliac bowl movement, if you’re not following the rightdiet) The days that followed were very stressful, his behaviour continued to deteriorate, hewas almost always crying, very lethargic & he had stopped trying to speak & walk.We went on holiday a week after, throughout the break he was constantly sick, crying &wouldn’t sleep. He had no enthusiasm for anything, even things he would usually haveloved. We started to feed him jars of baby food as we were worried it was the texture offood that he didn’t like as with every meal he seemed to gag as soon as food entered hismouth. This did not work at all, the sickness continued (little did we know it was the pastain the jars causing this) so we moved to plain things, bread & breadsticks, again not havingthe slightest clue we were poisoning him.

The Monday after we returned from our holiday, we decided that I would take him to thehospital and wait for someone to see me, as nothing was being done by my health visitor.Within an hour I was being seen by a wonderful doctor that asked me all about my familyhistory and what had been happening. As soon as I mentioned the fact that I was acoeliac, a light seemed to go off in her head, she did the usual tests for coeliacs andadvised me to start him on a gluten free diet as soon as possible, as she was worried hewould need to be omitted to hospital if he continued to deteriorate. Within 1 week of himbeing on a gluten free diet the improvements were amazing, he was still wary of certainfoods but he stopped being sick and started to gain energy to enjoy himself again. After ashort while the tests were back and it was confirmed that he was a coeliac. It was a reliefin one way as we now knew what to do, but for me it was a very sad result as it broughtback a lot of painful memories of being a child with the disease. However, I was

determined not to let that keep him from enjoying food, so I got his prescription sorted outand we now enjoy baking together and we have a wonderfully varied diet with the help ofthe pasta’s & flours we are able to order on prescription. We also invested in a breadmaker, which was a wonderful thing for my son & I, as we can have a sandwich thatdoesn’t crumble to touch and isn’t so small you need to eat half a loaf of it. Without ourprescription the bread would be a thing of the past as it is too expensive to buy enough tofeed us both as part of our everyday diet.I feel very strongly that without the prescription foods some people will resort to feedingtheir children or themselves gluten as they cannot afford the alternatives. I also know nowas a mother that feeding a family with 2 children is expensive, if we did not have theprescription pasta’s & flour we would not be able to eat these things regularly and I thinkyou will agree that to think of bread and pasta as a luxury is a very sad thing. Every sauce,



gravy & pastry in this house is made from scratch so that my son and I can enjoy ahealthy, varied and balanced diet and with the price of 9 stock cubes being almost £3 forcoeliacs I’m sure you can see that without the help of our prescription flour this would

become a very difficult thing to do on a weekly basis. I hope that the example of myexperiences can help the NHS to see that by taking the prescriptions away from peoplewith a disease that is already badly managed and not followed up on, will only result infurther problems along the line as these people grow older and start to see the effects ofnot following the diet.

nhs prescriptions for gluten free food consultation report june 2012

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