Impact case study database

Development of best practice guidance to help healthcare professionals support parents

The main results from R2-R4 were used to co-produce practical guidance with HCPs and parents (EV1) and were published on the Butterfly Project website ( www.neonatalbutterflyproject.org) in early 2016. As at July 2020, over 700 HCPs were registered from over 25 countries, and the site receives over 10,000 hits a year (EV2). This educational site hosts short video clips illustrating the main themes, to improve understanding of this challenging situation and offering a way for HCPs to discuss the loss with the parents. The resources are available free of charge, and thanks to international demand they have been translated into more than 10 languages such as French, German, Italian, Spanish and Arabic.

Other national bodies have subsequently taken up the research to inform their own guidelines. In 2016, the national stillbirth and neonatal death charity Sands used R2 to underpin the 4th edition of their guidelines for professionals “Pregnancy loss and the death of a baby” (EV3). For example, on page 194 the guidelines state:

• "If one or more babies have already died, it is important that staff caring for the surviving baby or babies… recognise the importance of all the babies to the parents and listen when the parents want to talk about the baby or babies who have died [citing R2].”

• “Support from staff may be crucial for parents’ well-being [citing R2].”

Sands also lead the National Bereavement Care Pathway, which signposts to Butterfly Project resources from its website (EV4).

In 2017, the Twins Trust produced a bereavement booklet which provides information on the Butterfly Project on page 68 (EV5).

In addition, the research, guidelines and cot cards have been used and endorsed by the following bodies (EV6):

• In a letter signed by Cherilyn Mackrory MP and the Rt Hon Jeremy Hunt, the All-Party Parliamentary Working Group on Baby Loss confirmed their full endorsement of the Butterfly Project and that it has enabled HCPs to feel more confident in supporting parents.

• Bereavement Training International, who have provided training since early 2016 to over 500 nurses, midwives and doctors. Many participants stated that this has been the most important and relevant element of the training and reported an increase in confidence when supporting parents at this very difficult time.

• The Tiny Lives Trust, who were a major sponsor of this research, stated that they fully endorse this work and that the training improves HCPs’ confidence in supporting parents.

As at July 2020, more than 10,000 cot cards have been distributed to 250 hospitals across the UK by the Skye High Foundation, who stated that “The cards have been very well received by parents, who value the kindness and support shown by hospital staff during a traumatic time” (EV7).

Impact on knowledge and confidence of healthcare professionals

A follow-up survey of HCPs (EV8) conducted in late 2019 showed that the material had improved their confidence. Of the 56 who provided responses to the question “Since completing the last survey in 2016, how confident do you feel in providing practical support and information?”, 89% reported feeling more confident. In addition, 85% said they felt that continuity of care had improved. All participants found the guidelines useful, and 71% said the guidelines better equipped staff to support parents. In terms of the Butterfly Project website, 96% found it helpful and 91% found the films helpful. In addition, 64% had used the butterfly cards and provided overwhelmingly positive feedback.

Feedback was also received from clinical leads from various Hospital Trusts in the UK (EV9), including:

• South Tees, where the guidance has been used since 2015 by over 100 HCPs.

• Bradford Teaching Hospitals, where the guidance has been used since 2016 by over 100 HCPs.

• The Royal Hospital for Children, Glasgow, where the guidance has been used since January 2017 by over 150 maternity HCPs.

• University Hospital Southampton, where the guidance has been used since 2017/18 by 170 Neonatal Staff.

The guidance has also been used internationally (EV10), including:

• Hospital Moinhos de Vento, Brazil who began using the guidance in October 2018 for all 25 NICU HCPs.

• Sachs' Children and Youth Hospital, Stockholm, Sweden where it has been translated into Swedish and is used by all staff.

All units confirmed that HCPs reported an increase in confidence after the guidelines were adopted. They had also all received or produced their own cot cards, which have been well received by parents during a difficult time.

Impact on parents

In late 2020, a survey was carried out with parents who had undergone a loss from a multiple pregnancy. Participation was voluntary and parents were approached with tact and sensitivity. Of the 41 who responded, 51% had been offered a cot card and found it helpful and 23% were not offered a card but would have liked one. Other responses discussed the logistics of card distribution but were generally positive (EV2).

In summary: Newcastle research, co-produced with parents and HCPs, has led to guidance which has been widely used to best support parents during a traumatic time.

Unmet need

One of the main causes of childhood obesity is an unhealthy diet, and since obesity has been found to track from adolescence to adulthood, improving children’s diets is crucial. However, a major barrier to healthy eating is cost. As stated in the SFP, the main reason that parents chose a packed lunch over a school meal was the expense: an average school meal cost £2 whereas a packed lunch can cost less than 50p. Therefore, improving the quality of a school meal and making it free to those who most need it is crucial to tackling childhood obesity and the consequent risk of lifelong obesity.

Impact on Government policy: free school meals for infants

The best way to ensure that children eat a healthy school meal is to provide these for free. As highlighted in the SFP, increasing take-up of school meals also offers financial benefits to the school via economies of scale. Providing a nutritious meal at school also normalises healthy eating and helps to establish this as a lifelong habit.

The SFP recommends on pages 12 and 127 that “Government should embark upon a phased roll out of free school meals for all children in all primary schools.” As a result, the Department for Education announced in September 2013 that all infant school pupils (4-7 year olds in Key Stage 1) in state-funded schools in England would be eligible for a free school meal from September 2014 (EV3). To aid implementation, the Government provided online guidance (EV4) for local authorities and schools, which links to advice on the SFP website. Although UIFSM was threatened during the November 2015 Spending Review, the clear benefits it offered resulted in its continuation (EV5). Similarly, the Government continued to fund schools to cover UIFSM in term time during the COVID-19 pandemic (EV6).

Impact on improving children’s diets via the School Food Standards

As well as being free for pupils, it is important that school dinners are good quality and nutritious. One of the key actions given in the SFP was the simplification of food-based standards for all schools. This is discussed in Chapter 8 (pages 90-99), which states the steps required to implement these standards and assigns responsibility to the Department for Education. The approach to revising the standards is given in Appendix B (pages 141-145) and provides a guide to portion size and frequency. These standards directly informed the Government legislative document “Requirements for School Food Regulations” (EV7) which was laid before Parliament in June 2014 and came into force in January 2015. Compliance with School Food Standards is mandatory for all maintained schools and applies to pupils of all ages.

The 2014 legislation fed into a July 2016 Department for Education document “School Food in England” (EV8) which sets out how legislation applies to food provided within schools in England. The document also links to the SFP website and the practical advice available there, stating: “The School Food Plan website draws together best practice and organisations that can support schools and the sector.” Although the advice in the document mainly concerns the revised School Food Standards, it also emphasises that every infant is now entitled to a free school meal (pages 4 and 5).

Uptake and impact of free school meals and school food standards

In 2013, uptake of school meals was only 43% (EV9) although this was rising. In 2015/16 it had increased to 76%, decreasing slightly the following year but then rising again to 80% in 2018/19 (EV10).

A large-scale independent review of UIFSM in 2018 (EV11) included 10 case study visits to schools, surveys of 327 schools and over 500 parents and 17 qualitative interviews with suppliers. The key findings were: 1) all local authorities reported take-up rates of over 72%; 2) 89% of caterers ensured children were served a balanced meal; and 3) 41% of school leaders reported a general increase of healthy eating as a direct result of UIFSM. UIFSM also allowed substantial financial savings, with parents reporting a median weekly saving of £10. In addition, parents reported that free school meals not only removed the stigma of claiming free meals but also saved nearly an hour of meal preparation time, allowing them to spend longer with their family.

Summary

The 2013 School Food Plan, informed throughout by Newcastle research and expertise, is a set of practical steps for Government, local authorities and schools to improve school food. This led to two initiatives: the 2014 introduction of universal free school meals for infants and the 2015 revision of the School Food Standards. These schemes are helping to improve children’s diets and contribute towards reducing the obesity epidemic.

Background

Newcastle research showed that CPs 1) are an appropriate place to treat minor illnesses; 2) have the capacity and knowledge to manage minor illnesses; and 3) are often more accessible than GP services. In 2015, the CP minor illness scheme was rebranded as the Think Pharmacy First Minor Illness Scheme, which increased public awareness of the 11,700 CPs in England.

Flu vaccination in CPs: informing the contract change and demonstrating proof of concept

In July 2015, the Community Pharmacy Contractual Framework (CPCF) changed to allow CPs to deliver a national NHS seasonal flu vaccine service targeted at eligible at-risk patients (EV1). The contract changed because of Newcastle evidence that CPs were accessible, convenient and could target hard-to-reach groups, often more so than GPs: the 2015 briefing (EV2) cites R1 as evidence of the accessibility of CPs. Since the service began in 2015/16, there has been a rapid increase in the number of patients receiving a vaccination and the percentage of CPs involved (see graph, EV3). This demonstrated that CPs were able to handle the increased volume of patients.

Recognition in NHS and NICE policy

The value and capacity of CPs has been recognised by both PHE and NICE. A 2017 PHE document “Pharmacy: A Way Forward for Public Health” (EV4), citing R1 and R3, states “commissioners should consider using community pharmacies to help deliver public health services”. The 2018 NG102 NICE guideline (EV5), which cites R1, encourages more people to use CPs by integrating them within existing health and care pathways and ensuring they offer standard services and a consistent approach.

Changing the NHS 111 algorithm to direct patients to CP

Having established the value and capacity of CPs, the next step was to change the framework of NHS 111 so that patients calling about a minor illness are directed to CPs, instead of to more urgent care centres such as EDs and GPs. A Newcastle University-led pilot (DMIRS) directly informed a change in the NHS 111 algorithm and call handler training so that, where appropriate, callers with minor ailments were referred digitally to a CP. The success of the trial led to DMIRS being rolled into the new national five-year CPCF in October 2019 (EV6, 7). The CPCF expands the role of CPs to embed them as the first port of call for minor illnesses and health advice across England. Page 7 states: “The piloting of DMIRS… has enabled us to introduce a well tried, tested, safe and sustainable service into the CPCF. It has also enabled us to demonstrate the value that community pharmacy can add.”

As at July 2020, an average of 5,511 patients per month calling NHS 111 have been recommended to CP (EV8), a total of 55,108 across England since October 2019. A large-scale evaluation of the service that ran throughout 2018 (EV9) found that 13,246 patient calls to NHS 111 were referred to CP. Of these, 47% of patients attended the CP and were successfully managed in this setting, saving over 6,000 appointments in GP or ED. A further 21% also attended CP, who escalated the patient to more urgent care, and 12% of patients were recovering or seeing another healthcare provider. Only 3% of patients did not attend CP, and in less than 1% of cases was the referral inappropriate.

Of note was the use of the service by patients from deprived areas: the highest number of calls and the highest number of patients referred to CP were from the five most deprived deciles (EV9). As noted in R1, CP accessibility was 99.8% in areas of the highest deprivation, confirming that those most in need of a CP were able to access one. Even in areas of low deprivation, a CP is often more accessible than a GP, both in terms of geography and opening times.

Impact on NHS 111 call handlers in the North East of England

In December 2017, the North East Ambulance Service (NEAS) NHS Foundation Trust call handling centre changed their algorithm to direct appropriate patients to CP for treatment; this presented an ideal opportunity to evaluate the effect on NHS 111 call handlers in practice. This pilot study was due to be repeated in other sites, but was halted by the COVID-19 outbreak. As of July 2020, 320 Health Advisors in NEAS had been trained on the new referral method, and as a result there has been a significant shift of patients from primary care to CP. From launch to end July 2020, a total of 43,191 patients have been sent to CP, of which around 46% were managed entirely in CP, saving around 20,000 referrals to a GP, Out of Hours Service or Urgent Treatment Centre in the North East alone (EV10).

Impact on World Health Organization (WHO) Guideline on Sugars

Newcastle research provided the basis for the WHO 2015 Guideline “Sugars intake for adults and children” (EV1), which assesses the effect of free sugars on unhealthy weight gain and dental caries. The latter aspect is informed entirely by R5; in addition, the data from R5 were robust enough to provide a numerical cap that applies to both aspects, as stated on page 16 of the Guideline. On pages 4 and 16, the Guideline strongly recommends reducing free sugars intake to below 10% of total energy intake, and recommends a further reduction to below 5%.

The Guideline was subsequently endorsed by two bodies, both citing R5. The first was the US Dietary Guidelines Advisory Committee, whose 2015 Scientific ReportFootnote:

https://health.gov/sites/default/files/2019-09/Scientific-Report-of-the-2015-Dietary-Guidelines-Advisory-Committee.pdf Page 342. strongly recommends keeping sugars intake to below 10%, citing the WHO Guideline and R5 specifically on page 344. Secondly, the FDI World Dental Federation’s 2015 responseFootnote:

Available on request to the WHO recommendations requests that “the 5% reduction is not a conditional but a strong recommendation.” In addition, the report states that “the systematic review by Moynihan and Kelly [R5] is the most extensive and rigorous on the subject.”

Impact of WHO Guideline on global implementation of a Sugar Tax

In direct response to the WHO Guideline, three countries implemented a Sugar Tax on soft drinks as a vehicle to limit free sugars intake. The first country was South Africa, who in April 2018 introduced a tax as a result of a July 2016 Policy Paper (EV2), directly citing the Guideline (page 5). Secondly, in May 2018 Ireland announced a tax of 20c/litre on drinks with 5-8g of sugar per 100ml, and 30c per litre on drinks with ≥8g/100ml (EV3). This resulted from an October 2016 Working Paper citing both R5 and the Guideline. The third country was Bermuda, who in October 2018 introduced a 50% tax on sugary products, which increased to 75% in April 2019. This resulted from a Ministerial brief delivered in June 2018 (EV4) which cites the Guideline.

The 2015 Guideline also informed a 2017 WHO Technical Document (EV5). On page 2, the document proposes a tax on sugary drinks as a major action to help prevent obesity, promote population health and reduce healthcare costs. Consequently, 13 further countries and cities have introduced or updated a sugar tax since the publication of the Technical Document, increasing the population now benefitting from a cap on sugar intake to over 536 million. These are (EV6): Brazil (2018), Estonia (2018), France (2018), French Polynesia (2018), Malaysia (2019), Norway (2018), Oman (2019), Peru (2018), the Philippines (2018), Qatar (2019), the Seychelles (2019) and Thailand (2019); and San Francisco and Seattle, (both 2018, EV7).

Campaign to introduce a Sugar Tax in the UK

In 2015, a “Sugar Rush” campaign took place in the UK to reduce sugar intake. The accompanying Channel 4 Documentary mentions the WHO report and repeatedly calls for a “Sugar Tax”. The campaign led to a petition for a tax on sugary drinks, which closed with over 155,000 signatures and was debated in both Parliament and in the House of Lords. A July 2016 Public Health England document (EV8) cites the WHO figures in a recommendation to reduce free sugars to 5% of energy intake to combat both dental caries and obesity, especially in children. In April 2017 this was cited, along with the WHO recommendations directly, in a House of Commons Library Briefing Paper that calls for a tax on sugary drinks (EV9). Consequently, the Soft Drinks Industry Levy (SDIL) came into effect across the UK in April 2018. Under the SDIL, drinks containing 5-8g of sugar/100ml are taxed at 18 pence per litre; and drinks containing >8g/100ml at 24 pence per litre.

Response by manufacturers and retailers to the Sugar Drinks Industry Levy (SDIL)

In response to the SDIL, most soft drink manufacturers and retailers reformulated their products, including Suntory (Lucozade and Ribena), Britvic (Robinson’s, J20 and Fruit Shoot); AG Barr (Irn Bru and Rubicon), Coca-Cola Fanta; and retailers’ own brands including Tesco, Morrisons, Asda and Co-op. Internationally, in September 2017 Unilever announced a reduction in the sugar content of certain drinks in line with WHO recommendations (EV10).

A September 2019 report by Public Health England (EV11) found that the average sugar content per 100ml of drinks subject to the SDIL decreased by 28.8% between 2015 and 2018, saving 30,000 tons of sugar from entering the food chain. In addition, sales shifted towards products with a lower sugar content, indicating that the higher price of drinks subject to the SDIL has changed consumer buying habits.

Summary

Research by Newcastle University allowed a numerical cap to be placed on free sugars intake. This evidence underpinned 2015 WHO guidance, which contributed towards several countries introducing a sugar tax on soft drinks. This high-level change in policy has already led to reformulations of sugary drinks, which are a step towards reducing obesity and dental caries at a population level.