Consultation on the Proposal to Decommission Gluten-Free Prescribing
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Consultation on the proposal to decommission Gluten-Free Prescribing Draft Report 1. Introduction 1.1. Following consideration of a proposal to decommission gluten-free prescribing by NHS Blackburn with Darwen and NHS East Lancashire CCGs, it was agreed that this was a change to the service provided to people with coeliac disease (the group most eligible for gluten-free prescriptions). Therefore it was agreed by both CCGs to undertake a formal consultation. 1.2. Following a presentation to and feedback from NHS East Lancashire Patient Partners Board, and feedback from NHS Blackburn with Darwen patient groups, it was agreed to conduct the consultation for a period of 4 weeks, from 17th October to the 11th November 2016. 1.3. The consultation was conducted primarily online, although the option for paper copies of the questionnaire, or the questionnaire in other accessible formats was available by contacting the respective CCG communication and engagement teams. Briefing documents and a frequently asked questions document was made available to support consideration of the survey questionnaire. 1.4. The survey was promoted through social media, traditional media via press releases and online. The survey was heavily promoted to patient participation groups, and membership scheme members as well as the general public. Contact was made with patients with coeliac disease who were members of the respective CCG involvement or membership schemes and as a result of this, contact was also made with the East Lancashire Coeliac Society. 1.5. The promotion of the survey attracted interest nationally from the National Coeliac Society, the British Specialist Nutrition Association, and the British Dietician Association and locally, from MPs (Kate Hollern, Graham Jones and Andrew Stephenson), and East Lancashire Hospitals NHS Trust (Directorate of Digestive Diseases). All of these respondents were opposed to the proposal and responses have been sent, or are in the process of being sent to acknowledge their feedback. 1.6. The online survey received 311 responses. The quantitative findings from this survey are attached in graphical form at Appendix 1and highlighted below. The qualitative data (comments) were analysed to identify the key themes and these are presented in this report. 1.7. David Rogers, Head of Communication and Engagement met with the East Lancashire Coeliac Society on the 14th November and received feedback from members of this group which is included as Appendix 2. 1.8. We are truly grateful for the engagement and the responses people have given. This report sets out our reflections regarding the feedback for consideration by each respective CCG. 2. Quantitative Findings 2.1 55% of the respondents had coeliac disease, and 21% of respondents were associated with a coeliac patient as a carer or relative. 2.2 32% of respondents were from Blackburn, and 5% from Darwen, with the rest of the respondents (73%) from East Lancashire localities. 1 2.3 66% of respondents currently receive gluten-free foods on prescription. 2.4 Respondents disagreed with the assertion that gluten-free foods have reduced in price over time (69%). 2.5 However, 82% of respondents recognised that gluten-free foods are more readily available in supermarkets than when compared to a decade ago. 2.6 71% of respondents disagreed with the statement that food should not be subsidised through the NHS. 2.7 62% of respondents agreed with the statement that gluten-free foods should be prescribed for those on low incomes. 2.8 51% of respondents felt that gluten-free foods should continue to be available on prescription for those who currently receive free prescriptions. 2.9 21% of respondents felt that gluten-free foods should be available on prescription but should be restricted to only bread and flour. 2.10 50% of respondents understood the CCGs’ rationale for reviewing whether or not to continue offering gluten-free food on prescription, while 20% are not sure. 3. Qualitative Findings 3.1 In total, 168 comments were received through the consultation survey. These have been analysed to determine the key themes. We received a small number of direct responses via email and these have been cross-check to ensure that the points made are included in the themes below. 3.2 Of these 72% of the comments were in opposition to the proposal. The main reasons (expressed as themes, below) were: High cost of gluten-free products (making them unaffordable) The prescription funds the provision of “staples” (ie bread, flour, pasta) NICE guidance advises health professionals to support coeliacs Negative impact on vulnerable groups (children, elderly, low income/poor) Gluten-free has had a precedent of availability on prescription Recognition that it is an illness/ medical condition requiring a medical solution; not a lifestyle choice Long term negative health impact of withdrawing the prescription 3.3 For those who agreed with the proposal (10%), the key reasons were: Wider availability of gluten-free products That it will force the market to reduce the price of gluten-free products The NHS budget could be spent on medical treatments /other urgent priorities Other groups don’t receive food products on prescriptions (other food intolerances were cited as an example) There are alternative food options and readily available self-help/alternatives 3.4 18% of the respondent comments were supportive of the proposal with the caveat that it could be limited to support those on low incomes, people affected by poverty, children and the elderly. 2 4. Conclusion 4.1 There is notable opposition to the proposal. The survey was widely promoted to the general public, however, it should be noted that this opposition is from a majority of respondents who have coeliac disease. The CCGs will need to consider the reasons highlighted for this opposition in their deliberations. 4.2 The notion of a ‘middle path’ between continuing and stopping gluten-free prescriptions was highlighted in the comments, including from those who were opposed to the proposal, and in particular from those whose comments could be characterised as “limit or restrict” prescribing. 4.3 The East Lancashire Coeliac Society members were equally understanding of the rationale for the proposal, but urged the CCGs to consider a compromise position or middle path. The notes from the meeting articulate this point. For example could the CCGs review the list and consider funding only key staples and not everything? The group appeared to be open to restrictions or limits. Perhaps the CCGs could set thresholds for the availability of gluten-free prescriptions – particularly for those on low incomes, those in poverty, the elderly, children, and the newly diagnosed? Members of the East Lancashire Coeliac Society were keen that the CCGs explore a voucher system perhaps with a set price per month. Vale of York CCG have piloted this and it appears to work well. 4.4 Whatever the CCGs decide, it was clear from the feedback that the experience of those with coeliac disease will need to be considered further, with the CCGs and the NHS locally considering what self-care support can be made available, as well as the provision of lifestyle information and guidance to those with coeliac disease. Coeliac Society members and those on gluten-free diets without prescriptions, have offered to work with the CCGs in this regard. 5. Recommendations 5.1 Members are asked: 5.1.1 To note the findings from the gluten-free consultation. 5.1.2 To consider these findings in their deliberations concerning the provision of gluten-free prescriptions. 5.1.3 Record their thanks to the respondents of the surveys and everyone who gave their views through the consultation, and agreeing for communication to be issued highlighting their thanks and the next steps. David Rogers Head of Communication and Engagement 3 .