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Review of gluten-free prescribing
NHS Bradford City and NHS Bradford Districts CCGs have recommended that GPs no longer prescribe gluten-free (GF) products.
The decision was reached following consideration of a number of factors, including clinical considerations, financial information, patient choice, and feedback from a public consultation on prescribing GF food, which took place from July to September 2016. The CCGs’ joint clinical board (JCB) decided to:
- recommend and support GPs to stop providing gluten-free food on prescription
- offer support and commitment to work with Coeliac UK, patient groups and voluntary care organisations to raise awareness and further improve the provision of GF foods in supermarkets and restaurants.
This has been a hard decision which we have not taken lightly; we know this will affect many people who have received gluten-free food on prescription for a long time.
The NHS is still spending £25m a year to provide gluten-free products on prescription. In Bradford, we are spending around £320,000 a year on this service. With an increasing demand for services, the NHS must look at all products and services and make decisions about what services to expand and what to reduce.
The NHS has to pay up to four times more than a customer would to buy an equivalent gluten-free product on the high street. We hope that patients will support us in recognising that this is not an efficient use of NHS funds.
During the consultation over 500 responses were received from a wide range of people, including many living with coeliac disease. Clinical evidence, financial information, patient choice and feedback from the consultation were considered carefully by the JCB.
Four tests for service change
In making any service changes, NHS organisations need to be assured that the following four tests have been taken into consideration. These are known as the Nicholson ‘four tests’ and must show:
- clear, clinical evidence base
- account has been taken of the need to develop and support patient choice
- support from GP commissioners
- strong public and patient engagement.
As a protein, gluten is not essential to diet and can be replaced by other foods. There are a number of naturally GF carbohydrates which are widely available that can be used instead of foods containing wheat, rye and barley. These include rice, potatoes and flour alternatives such as millet and corn flour.
There is much information available to patients via Coeliac UK about how to eat a healthy GF diet.
Changes to the law mean food labelling has improved and it’s easier to see which foods contain gluten and supermarkets and local stores are increasingly stocking GF products.
Across Bradford, all major supermarkets and some smaller stores now stock GF food. Tesco, Morrisons, Asda and Sainsbury’s all have a ‘Free From’ range whilst other stores are introducing their own ranges.
If patients with coeliac disease feel the decision to stop GF prescribing will impact disproportionately on their health compared to other patients with coeliac disease, they should talk to their GP. However, the cost of buying GF products is not a reason to challenge the decision.
For the past 30 years the NHS has prescribed GF foods to patients who have been diagnosed with coeliac disease. This service started when GF foods were not as readily available as they are today.
The NHS spends about £25 million a year on prescribing GF food. Locally, this is more than £320,000 per year.
It is a fact that the NHS has to pay up to four times as much than a customer would to buy an equivalent gluten-free product on the high street. This is because the ordering has to be done through the same prescription process that is used to deliver medicines.
Comparison costs: bread and pasta staple items (as of Nov 2016):
Bread: 400g white sliced loaf
- NHS gluten-free bread: average cost £3.25 + 90p dispensing charge for every item on prescription
- Tesco gluten-free own brand: £1.50
- Tesco own brand normal bread: 70p
Pasta: 500g penne pasta
- NHS gluten-free pasta: average cost £6.45 + 90p dispensing charge for every item on prescription
- Tesco gluten-free own brand: £1.20
- Tesco: own brand normal pasta: 59p
When considering the proposals, the CCGs were clear that there were plenty of alternative choices available to people who receive gluten-free food on prescription, either on the high street or alternative naturally gluten-free foods.
Feedback from public consultation: November 2016
Listening to local people
The CCGs have a legal duty to involve people in decisions about commissioning plans and service changes, especially those who may be affected by any proposed change.
In addition to on-going engagement with staff, representatives and local people, the CCGs have proactively consulted local service users and national representatives to ensure that any decision to change is informed by a wide range of perspectives.
Prior to the launch of the consultation, Bradford Council’s Health Overview and Scrutiny Committee (HOSC) and the CCGs’ People’s Board were made aware of the consultation and members were invited to feed back their views. As a result of engaging with the People’s Board, members assisted in designing the consultation options.
Patient groups, including local patient participation groups (PPGs), were informed and GP practices were written to. Other stakeholders were also contacted and Coeliac UK was provided with information to pass to local members.
2,500 copies of the consultation leaflet were printed and distributed widely. These included a questionnaire for members of the public to complete and return. Leaflets were sent to all patients with coeliac disease registered at Bradford GP practices.
The consultation was launched on 4 July 2016 and ran for three months until 30 September 2016.
A number of other activities were carried out to gain the views of a wide range of people:
- public meetings: three open public meetings were held – in Shipley and two in Bradford, with GP clinical lead and pharmacy lead in attendance
- People’s Board: the proposals were discussed by the board
- local media stories
- social media
- through information circulated by other organisations (including Healthwatch and VCS groups)
- residents, councillors and MPs were able to respond to a printed survey or an online version. They could also submit comments by email or letter
- liaison with professional bodies including Coeliac UK, Bradford Hospitals’ dietetics service, Bradford gastro-intestinal specialists, RCN, YORLMC
- meetings with other groups: during the consultation, additional stakeholder meetings were held with Bradford Health Overview and Scrutiny Committee (HOSC) and Bradford CCGs’ clinical commissioning forums (CCFs)
Who talked to us
In all, 560 people completed the survey, the Shipley drop-in session was attended by approximately 20 residents with a further eight residents attending the Bradford events. A small number of written responses were also submitted via letter and email, including from Coeliac UK and the British Specialist Nutrition Association Ltd.
Most of the responses were from people living in the Bradford CCGs’ area, but there were also responses from clinicians and some people living out of area (Stoke-on-Trent, Lancashire, Dorset and Hull) who found the consultation online.
The majority of responses were from patients diagnosed with coeliac disease (73%). We targeted 1376 patients with coeliac disease (see page 3) by asking their GP practices to send the consultation survey direct to their homes, so the results are biased towards the views of this group of people, most of whom receive GF food on prescription.
The consultation can be seen as effective in reaching those who are more likely to be affected by a decision to change.
Through Bradford Council, we contacted all local councillors – and had no response from them. All local MPs were written to too – the Department of Health received one letter from Philip Davies MP on behalf of a constituent, with a response from Lord Prior of Brampton, parliamentary under-secretary of state for health (Lords).
What people told us
We asked a number of questions in the consultation; here’s a summary of the responses.
People who have a diagnosis of coeliac said:
We asked respondents why they received GF food on prescription:
People with a diagnosis also believe that the NHS should provide GF food on prescription (87%). Almost 8% were unsure and 6% said no.
When asked “is it appropriate that the NHS provides GF food on prescription for those who need it” all respondents said:
Please note, however, that this may not reflect the true number of non-coeliac people who think it is NOT appropriate, as 40 of them skipped this question.
When asked whether people find it difficult to find GF in their local shops, 59% of respondents said that is wasn’t, and just over half of those who responded (53%) would consider buying GF food at lower cost through community outlets.
A number of themes were evident in the feedback received during the consultation period, including:
- the additional cost of GF products in supermarkets
- risk to people’s health if they couldn’t access GF products on prescription
- fairness: need for equality in dealing with patients with long-term conditions
- quality of prescription foods vs supermarket brands and inconsistent stock in supermarkets
- recognising the needs of children and low income/vulnerable groups
- increased support and advice for people following a GF diet for medical reasons
- savings for the CCGs appear to be minimal
- concerns raised specifically around children/students – long term impact
- concerns about vulnerable people and those on low incomes
A number of people who responded suggested alternative solutions, such as:
- it would be acceptable for the CCGs to stop prescribing everything apart from bread and flour.
- a preference for vouchers to enable the purchase of fresh GF food (in preference to freezing large quantities after prescriptions had been dispensed)
- limited prescriptions regulated by GPs
- that the CCGs and wider NHS should negotiate with suppliers to reduce their costs to the NHS and to patients
- prescriptions given only to vulnerable people – for example, children, older people and those on low incomes.
Feedback from some respondents reflected a concern that patients with coeliac disease had been unfairly targeted for cuts, with some requesting that if the NHS needs to save money it should retain GF food on prescription and instead cut services to other patient groups.
The public drop-in sessions were a chance for local residents to engage directly with CCG clinicians and GP clinical leads. Much of the feedback from these sessions reflected the concerns raised through the survey, but it is also fair to say that several people became more sympathetic to the CCGs’ position when they heard about the cost of GF products to the NHS compared with those on the high street.
They felt the CCGs should feedback concerns about the cost to the Department of Health as the prices were unfairly high. People also suggested that some coeliac patients had ‘abused the system’ by requesting a lot of products on prescription, and thought that a limit on only bread, flour and pasta would be a way forward.
Quotes from people who responded included:
“If bread in supermarkets is cheaper than cost to the NHS; then it (prescriptions) should be stopped.”
“The cost to the NHS charged by the manufacturers is too much.”
“A mother with a child with a genetics condition that has special dietary requirements doesn’t get anything on prescription for that.”
“There is a wide range of foods for special diets and adults (with coeliac disease) should buy it in the same way that people with lactose and other intolerances and diseases do.”
“GF food should be regarded as prophylactic treatment as the condition could worsen if the (GF) diet wasn’t followed.”
“If someone doesn’t get items on prescription and can’t afford to buy them, then there is a chance or even danger they may not stick to a GF diet which could lead to health complications in the future.”
“GF food is a form of treatment for those diagnosed with coeliac disease.”
“If a diabetic gets medication for free, why should coeliacs not?”
“Some people don’t have means to travel to supermarkets/health stores.”
“Prescription GF food is fortified with the vitamins that coeliacs often lack.”
“(This) could put at risk certain sections of society if this was withdrawn.”
“Why don’t NHS and GF bakers get together and reduce the prices to the NHS – because they will suffer in the long-run if they can’t sell their products.”
“I think it should be available on a means-tested basis.”
“Provide specialist dietetic coeliacs outreach service – help families with understanding and skills in making meals that are GF.”
Responses from professional bodies, clinical groups and other stakeholders
Coeliac UK is the largest patient organisation representing over 60,000 members and wrote to confirm it had contacted its members living in the Bradford area to encourage them to respond to the consultation. It also referred to the ‘Community pharmacy supply of GF foods: a toolkit for commissioners’, produced by Coeliac UK, the National Pharmacy Association and the Pharmaceutical Services Negotiating Committee.
The British Specialist Nutrition Association (BSNA) – the trade association representing manufacturers of products designed to meet specialist nutritional needs, including GF - wrote to respond to the consultation document. It urged the CCGs to take account of the NICE quality standard for coeliac disease which is due for publication this autumn.
The Department of Health responded to Philip Davies MP (Shipley) who sent a letter about a constituent’s concerns about the GF proposals. In its response, the DoH said: “The NHS needs to make significant efficiency improvements. The Government needs to prioritise the use of resources, and the NHS cannot reasonably be expected to provide for all a patient’s GF food.”
Bradford’s health overview and scrutiny committee (HOSC) was supportive of the need for the CCGs to save money and reduce waste in the system – QIPP. Some members voiced concerns about the impact of the loss of GF foods on prescription on children and low income patients; they also questioned why the cost to the NHS was so high and asked if the food suppliers could be contacted direct to make them cheaper. The CCGs’ clinical lead explained this would require a national response.
The CCGs’ clinical commissioning forums (CCFs) did not express strong views either way about the GF proposals, and didn’t express any opposition if changes were to happen resulting in stopping GF on prescription.
The CCGs’ Commissioning for Value (CfV) recommended that the CCGs stop all GF food on prescription, on the basis that we have an existing options policy which covers harm and exceptionality.
The consultation has provided both CCGs with additional information on the issue of prescribed GF food. Much of this feedback relates to the availability of specific GF products in Bradford and the current cost of GF food as a whole.
Some concerns relate to the ability of coeliac patients to manage their condition safely without the prescription service. However, some coeliac patients stated they had been managing their condition safely without using the prescription service.
A key theme through both the drop-in sessions and the survey is that coeliac patients felt unfairly targeted by the CCGs for cuts. This is not the case however, as the medicines management team is reviewing all prescribing to identify further savings to be made against products which can be readily bought over the counter.