54 The final helping A day in the life of

gillian White dietitian

gillian has dietetic experience in oncology, palliative care and nutrition support. She held the post of therapy Services manager at nottingham university hospital, which included leading the development of nottinghamshire’s home enteral tube feeding Service, until october 2013.

five yeArS of ChAnge: A vieW from PAtientS And CArerS

an innovative nutritional products contract, awarded in 2007, was the catalyst for significant development of the Home enteral tube feeding (Hetf) support for adults and children across Nottinghamshire. changes made during this period had clear benefits for service provision and costs, but the impact on patients and carers had never been formally reviewed.

Five years on seemed a good time to canvas the views of patients and carers made possible by a small Research into Practice Grant from The East Midlands Collaboration for Leadership in Applied Health Research and Care (CLAHRC). Although I had been part of the Nottingham HETF service since 1999 and was involved in many of the changes that had taken place, at the time of the project I had little direct patient contact and would be unknown to the patients and carers.

baCkground NICE Guidance (2006) recommended a multi-professional team approach for tube-fed patients at home, with individualised care plans, including monitoring and aims, and training for patients and carers to manage tubes, delivery systems, procedures and regimen, recognise risks and troubleshoot common problems. Routine and emergency contact numbers, information about delivery and regimen, contact details for delivery company and instruction manuals should also be provided. Before 2007, small, separate dietetic teams of one to three staff provided HETF support throughout Nottinghamshire, aiming to meet NICE guidance, but struggling to cope with growing demand and complexity. Since 2007, gradual change has led to the creation of one service based within a single organisation, aiming to provide consistent best practice for all HETF patients within Nottingham and Nottinghamshire.

Combining existing budgets with new funding, specifically for nutritional products and ancillaries, enabled better use of existing funds (e.g. economy of scale, shared approach), with savings ploughed into service development including staffing. A coordinated service with increased staffing, including specialist nursing and support workers, meant that there was time to provide training for all patients and carers, as well as school and community nurses and care homes. Commercial partners were monitored more carefully and liaison with partners in hospital and community were strengthened. The overarching direction of change was from inconsistency and a ‘fire fighting’ approach towards planned and equitable care.

In 2012, Nottinghamshire had a single HETF Service with a team of dietitians and dietetic assistants (18wte cf 5wte in 2007) based together and working to shared guidelines to support adults and children. A locally agreed patient pathway allowed better monitoring of patients and resources, a flexible response to external change and the development of a supportive team approach, including close working relationships with hospital dietitians and other partners. This service change happened in the context of many NHS changes and increasing pressure on funding, with further change being planned to ensure future sustainability.

tHe proJeCt I carried out a small retrospective survey of home enterally tube-fed patients and their carers who had been in contact with

the HETF team since 2007, electing to talk directly to a small number of individuals about their experiences. Of the active 655 patients on the HETF database in May 2012, 159 started home enteral feeding before 2007 (i.e. for the whole of this period), but only 80 of these were living in their own homes with more involvement in feed delivery and care. From this group, seven patients fully supported by the core HETF team, rather than sharing care with specialist hospital colleagues, were interviewed, representing a cross section of age groups and managed by different members of the team.

Team meeting records and reports, plus discussion with long-standing team members helped identify the variety of changes made since 2007. As well as planned changes linked to the new contract (for example moving to an ‘off script’ system and change of feeding pump in hospital and community), there were wider changes, such as the development of Clinical Commissioning Groups, Trust mergers, responding to national guidance such as NPSA alerts, and practical changes such as moving office, new staff, change of feed and equipment, record keeping and electronic systems. Discussion with the team also helped form an interview schedule with key questions to be used in all the interviews (see Box 1). Interviews started with open exploratory questions about individual experience, then moved on to asking questions about specific changes that we knew had taken place. Interviews usually took place in patients’ homes and were recorded; initial written notes were typed, then reviewed and expanded by listening to the interview recording. The format and outcomes of the project were discussed with a patient representative for more objective feedback about content and clarity, as well as with the CLAHRC team.

findingS Over 40 changes were identified, including contractual change, feed and equipment, staffing, resources, costs and organisation; but many of these were ‘backroom’ changes supporting team working or systems of care.

None of the patients or carers interviewed recalled the change from prescribed enteral feeds to an ‘off script’ approach, seen by the team as the most significant change in 2007. Indeed, few of the changes listed were highlighted directly, although, with prompting, some people remembered changes such as feed reformulation or a new type of pump. Changes to feeding regimen or routine equipment (e.g. syringes) were more memorable depending on impact on the individual.

“As a user I have noticed very little, which is fantastic! There may be massive change behind the scenes, but dietetic services ‘hide’ the change so it doesn’t impact on families which is a real benefit.”

“Changes happen but aren’t noticed. One was the feeding pump; we preferred the old type and kept that, but might not have given it long enough.”

All the patients and carers knew how to contact their dietitian and the HETF service if needed. Relationships with dietitians, who carry out regular face-to-face reviews, were stronger than with assistants, who do telephone reviews and help with ordering and problem solving. Planned regular contact was viewed very positively by all those interviewed, with positive feedback about the feed provider and delivery service confirming their annual patient survey.

The team supports a significant number of patients for more than five years, with trust and confidence building up over time and developing a therapeutic relationship which supports patient care. This is especially important when tube feeding starts in childhood and in the transition from paediatric to adult services, including change of dietitian; these are often all traumatic times.

“Very positive about the impact of feeding. Since had gastrostomy health improved, no longer back and forward into hospital, chest improved, ‘never looked back’. Initially reluctant but would recommend it to anyone now.”

Early experiences of feeding could be especially traumatic and the interviews reinforced the importance of the team during the first few months of feeding and during periods of change.

“To start with I wanted more contact, lot to learn. Getting used to new dietitian, no contact with assistant yet.”

“It’s really nice to talk outside the hospital environment, face to face, to have time to talk rather than rushing in the hospital. Someone comes into your home and sits opposite you at the table, you talk more, explain how you are doing it at home, talk about problems at home instead of hospital where it’s a different world.”

Good communication was important, with some requests for more explanation of things that

the team may take for granted, such as the role of assistants and out-of-hours services.

Patients or carers contacted were pleased to be give feedback and would be willing to contribute to further reviews or service development.

diSCuSSion Anyone working in the NHS is aware of working in a constantly changing environment, but it was helpful to stop and reflect, specifically on the variety and scope of the change experienced by this specific team. Small changes are easily forgotten and this review showed more change than I initially expected. Despite this, it was striking how little the people interviewed noticed; changes that were important to the team seemed to have minimal impact whereas issues that seemed small to healthcare staff loomed large for patients and carers. Preparation for significant changes aimed to minimise the impact on patients, for example, the move from feed being prescribed by the GP to being ordered by the dietitian, which had major implications for the service, went largely unnoticed and generated few of the problems predicted. Changes to feed and equipment in regular use were more significant for patients and carers. Explanation about the reasons for change as well as the practical impact was welcomed by patients and carers, for example, regular reviews of ancillary equipment, such as syringes, to ensure best value.

There was very positive feedback about the service and staff, especially the dietitians. The role of dietetic assistants, who carry out telephone reviews, was less clear to patients and carers, an initial faceto-face visit by the assistant would help start their relationship with people they will support mostly by telephone. Use of new technologies such as Skype, could also be considered with more explanation of the assistant’s role by dietitians during visits. Patients and carers, especially in paediatrics, placed great value on developing a relationship with individual HETF team members, particularly in longterm tube feeding. Some staff changes are unavoidable, while staff rotation and varying caseload can provide better and more flexible support in the longer term. Recognising the importance of relationships with patients and carers helps the team explore ways of minimising the impact of this sort of change, for example, making time for a personal handover to a new dietitian where possible, or producing a newsletter with regular updates about staffing and service issues. These interviews suggested that it would be beneficial (and not too difficult) to involve patients and carers in service design and review, perhaps also in staff training and induction.

ConCLuSionS Overall, these interviews provided positive feedback for the HETF service and the changes that have been made, with much to learn by making time to listen directly to patients and carers. Not surprisingly, staff perceptions were different to those of patients and carers; issues that loomed large for the team had little impact on service users, partly because we worked to prevent negative impact, but also because their concerns are different. A patient-centred approach, including listening to patients and carers, as well as explaining and problem solving, is at the heart of HETF support as of so many other areas of dietetics.

interview outline

• Introduce self and talk a little about the service. • Ask permission to record the interview and show equipment. • Introduce the project, explain that there are no right or wrong answers, not checking up on the team, just want to find out about their experience. • What have they noticed since 2007 (without prompting)? • Ask about specific changes and how that has affected them. - no longer need a prescription for feed from the gp. - dietitian and assistant in contact every three months at least to review feeding. - Standardising equipment to get best value, e.g. syringes. - team based together on one site, more staff. • Have other service changes affected them positively or negatively, e.g. equipment changes, changes to delivery service, electronic systems? • Are they aware that they have a named dietitian and regular system of reviews including link with a dietetic assistant?

reference NIce (2006) Nutrition Support in adults, UK

Web WAtCh

online resources and useful updates.

BoWel caNcer diagNoSiS to the rise of coronary heart disease. StatiSticS www.bhfactive.org.uk/newsRecent figures released by the item/305/index.html charity Beating Bowel Cancer show that the majority of bowel cancer demeNtia: a puBlic HealtH patients are still diagnosed too late, priority costing the NHS millions. There is The World Health Authority has currently a large variation within published Dementia: a public health the NHS across England in terms priority, jointly developed by WHO of early diagnosis of bowel cancer, and Alzheimer’s Disease Internawith the best performing Clinical tional, aiming to raise awareness of Commissioning Groups diagnos- dementia as a public health priority, ing 63 percent of patients early, advocating action at international compared with only 30 percent in and national levels. The report is the worst. The figures show that expected to facilitate governments, if every NHS region in England policy-makers, and other stakeperformed as well as the best at di- holders to address the impact of agnosing bowel cancer early (stages dementia as an increasing threat to 1 and 2), 3,200 lives could be saved global health. www.who.int/menand £34 million could be diverted tal_health/publications/demento other bowel cancer services and tia_report_2012/en/ treatments. www.beatingbowelcancer.org/news/apr2015/lack- Blood aNd traNSplaNt progress-diagnosing-bowel-cancer Strategic plaN

pHySical actiVity StatiSticS

The British Heart Foundation’s latest publication Physical Activity Statistics 2015 shows that 44 percent of British adults perform no moderate physical activity. A comparison of 28 countries from the European Union ranks the UK in 16th position based on the frequency of moderate physical activity performed in the last seven days. The Netherlands lead the way in Europe with only 14 percent of adults performing no moderate physical activity, followed by Finland and Denmark (23 percent). The British Heart Foundation expressed their concern that physical inactivity is contributing NHS Blood and Transplant has published its Strategic Plan 20152020. It sets out how the organisation plans to reduce the price of blood to £120 per unit as part of their five-year plan, which also outlines action to: provide enhanced digital connections with blood donors to improve their experience before, during and after donation; provide a higher quality of service for hospital customers and those who use NHS Blood and Transplant products; match world-class performance in organ donation and increase the number of organs available for transplantation. www. nhsbt.nhs.uk/news-and-media/ news-articles/news_2015_06_03.asp

older people aNd caNcer

Public Health England and NHS England have updated the publication Older People and Cancer originally published in December 2014. This report summarises what is known about older people and cancer, drawing together information from different sources and studies. This report defines older people as those aged 75 and over and is focused on England; however, other age groups and geographies are presented and compared where it is useful to do so. Each chapter provides high level key messages, followed by a more comprehensive overview of the evidence and statistics. www.ncin.org. uk/publications/

caNcer SurViVal iN tHe uk

Public Health England’s National Cancer Intelligence Network has published in conjunction with Cancer Research UK, Major resections by cancer site, in England; 2006 to 2010. Cancer survival in the UK is lower than in many comparable countries. This difference may be caused by a number of factors, including later diagnosis and less access to optimal treatment. Although surgery can be used in combination with radiotherapy and/ or chemotherapy, experts believe that it is responsible for around half of the cases where cancer is cured, making it the most effective form of treatment. This report examines the variation in this key cancer treatment: it presents major surgical resections for 20 sites by sex and age-groups, using the most recently available data in England. www.ncin.org.uk/ publications/

demeNtia from tHe iNSide

The Social Care Institute for Excellence has produced a new video resource ‘Dementia from the inside’. This film highlights what it might feel like to live with dementia. Viewers will experience a little of what it is like to find yourself in a world that seems familiar and yet doesn’t always make sense. The incidents pictured in this film and memories recounted are based upon true experiences gathered from people living with dementia. It is aimed at professionals and the public. www.scie.org.uk/socialcaretv/ video-player.asp?v=dementiafrom-the-inside

NatioNal ScreeNiNg programme recommeNdatioNS

The UK National Screening Committee has published the minutes from its latest meeting setting out its recommendations for national screening programmes. The committee upheld its recommendation against screening adults in the UK for bladder cancer and also made recommendations against introducing national screening programmes for depression in adults and screening newborn babies for amino acid metabolism disorders, fatty-acid oxidation disorders and galactosaemia. www.gov.uk/government/news/ national-screening-programmefor-bladder-cancer-not-recommended

poVerty iN tHe uk

The Joseph Rowntree Foundation has published three reports exploring poverty: • Economic theories of poverty - An overview of the main economic theories relating to the causes of and responses to poverty in the UK. www.jrf.org.uk/publications/ economic-theories-poverty • A philosophical review of poverty - A review of how poverty has been understood and analysed in contemporary political philosophy. www.jrf.org. uk/publications/philosophicalreview-poverty • Sociological perspectives on poverty - Discusses contested concepts that relate to how poverty may be understood from a sociological/social theory perspective. www.jrf.org.uk/publications/ sociological-perspectives-poverty

preScriptioN aNd otHer NHS cHargeS

Nice SHared learNiNg caSe Study; irritaBle BoWel SyNdrome traNSformiNg SerViceS for people WitH learNiNg diSaBility

eVideNce Summary: NeW mediciNeS - ulceratiVe colitiS/type 2 diaBeteS

The House of Commons Library has published a briefing paper The prescription charge and other NHS charges. This paper sets out the provision for prescriptions and dental charges, which groups are exempt, and explains where charges vary in devolved countries. It also covers efforts to reduce prescription wastage and examines the future of NHS charges. http:// researchbriefings.files.parliament.uk/documents/CBP7227/CBP-7227.pdf

NICE has added Improving evidence-based management of irritable bowel syndrome across Somerset to its shared learning database. The shared learning example shows how NICE guidance and standards have been put into practice. www.nice.org.uk/sharedlearning/improving-evidence-basedmanagement-of-irritable-bowelsyndrome-across-somerset NHS England has established five fast-track sites that will test new approaches to reshaping services for people with learning disabilities and/or autism, to ensure more services are provided in the community and closer to home. The five sites: Greater Manchester and Lancashire; Cumbria and the North East; Arden; Herefordshire and Worcestershire; Nottinghamshire; and Hertfordshire will bring together organisations across health and care that will benefit from extra technical support from NHS England. The sites will be able to access a 10 million transformation fund to kick-start implementation from autumn 2015. www.england.nhs.uk/ourwork/ qual-clin-lead/ld/transform-care/ ft-sites/

NICE has published two new evidence summaries new medicines, the details are as follows: Ulcerative colitis: budesonide multimatrix (Cortiment) (ESNM58) and Type 2 diabetes: dulaglutide (Trulicity) (ESNM59). Evidence summaries: new medicines’ provide a summary of the published evidence for selected new medicines, or for existing medicines with new indications or formulations, that are considered to be of significance to the NHS. The strengths and weaknesses of the relevant evidence are critically reviewed within the summary, but the summaries are not formal NICE guidance. www.nice.org.uk/ advice/esnm58 and www.nice.org. uk/advice/esnm59