Hospital at Home for Children and Young People 0-18 in Islington: Service Evaluation 2014-2015

Hospital at home for children and young people 0-18 in Islington: Service Evaluation 2014-2015

March 2016 (Update April 2016)

Evaluation team Monica Lakhanpaul, Programme Director Children and Young People, UCLPartners & Professor of Integrated Community Child Health, Institute of Child Health UCL Jane Wilcock, Senior Research Associate, Primary Care & Population Health, UCL Rachael Hunter, Senior Research Associate & Health Economics Advisor, Primary Care & Population Health, UCL Susan Crane, Programme Manager, Children, Young People & Maternal Health UCLPartners Swati Zaveri, Research Associate, Institute of Child Health UCL Charlotte Hamlyn-Williams, Research Associate, Institute of Child Health UCL Felicity Norris, MBBS Year 4, Academic UCL Raghu Lingam Senior Lecturer in Epidemiology and Child Health, Newcastle University and Honorary Consultant Community Paediatrician in the Great North Children’s Hospital Newcastle

Acknowledgements We wish to thank all of the general practitioners, hospital staff, IT managers, pharmacists and hospital at home nurses of Islington, as well as the families and patients themselves who fully supported us with the evaluation. Many individuals helped provide the content of this evaluation and we are particularly grateful to all those who agreed to be interviewed and provide the service use data.

This work was commissioned and funded by Islington Clinical Commissioning Group.

The views and opinions expressed in this report are those of the authors.

Further information Professor Monica Lakhanpaul Professor of Integrated Community Child Health Programme Director, Children, Young People and Maternal Health UCLPartners Head Population, Policy and Practice UCL Institute of Child Health Tel: 020 7905 2259| [email protected] |30 Guilford Street | London WC1N 1EH Susan Crane Programme Manager, Children, Young People & Maternal Health, UCLPartners Tel: 020 3108 2339 (x52339) | susan.crane@uclpartners.com | www.uclpartners.com UCLPartners, 3rd Floor, 170 Tottenham Court Road, London W1T 7HA @uclpartners | #UCLPchildhealth | @sfcrane

Executive Summary This report documents evaluation findings of the Whittington Health hospital at home service for children and young people, a collaborative service offered by Whittington Health NHS Trust and UCLH NHS Foundation Trust. However, the economic analysis is only based on hospital data from Whittington Health and not UCLH due to limitations with the data analytics. The service evaluation used a mixed methods approach to assess interviews, surveys, case studies and economic modelling to capture views and recommendations, illustrate the enhanced service provided and analyse its cost-effectiveness.

The hospital at home service at Whittington Health commenced in mid-August 2014; referrals to hospital at home commenced at UCLH in November 2014. Specialist paediatric nurses work with acute paediatricians at Whittington Health and UCLH to provide safe care at home for acutely unwell children and young people (0-18 years) in order to reduce the length of hospital stays or prevent admission. This evaluation is only about patients referred to hospital at home by Whittington Health. The service focus is on providing care for children with complex needs out of hospital (closer to home), reducing length of hospital stay, and supporting early discharge.

Evaluation of the model: benefits, drawbacks and cost implications

All families who completed a survey or interview rated the care received overall as very good or good and would recommend the service. The nurses report feeling empowered, and secondary care teams appreciate the availability of the service and benefits of ambulatory care for patients.

Allowing joint visits ensures continuity and has been particularly beneficial when a senior nurse has been able to pass on experience to a colleague. This flexibility has allowed for a skill and grade mix which is affordable and sustainable.

Service level implications: Positive implications of hospital at home

The nurses have been able to increase their presence and improve working relationships with secondary care teams when they are not on home visits.

Difficulties with implementation of the current system

There are no reported significant incidents in its first year of operation. Key areas to consider and that require further review include the perceptions of ownership of the service, the lack of 24-hour care, and the need for robust evidence underpinning hospital at home. However, the evaluation of the service at this stage, demonstrates earlier discharge more than avoidance of admission.

Organisational level difficulties: Practice level issues

Lack of capacity has not been a problem but as the service expands this will need to be reviewed. UCLH has had to overcome initial referral difficulties by establishing the eligibility of a patient for hospital at home before they decide if a referral is appropriate.

Community working can be isolating for staff and raises questions about personal safety with practical measures taken to address risks. The hospital at home nurses have workstations on the ward at Whittington Health that may help with integration and promotion of the service.

One significant issue is that different IT systems are used for recording service usage at different sites. This makes accessing and comparing the data problematic.

Future steps and recommendations

The service plans to broaden the range of conditions the service covers and to embed internal evaluation processes. The service also requires a senior pharmacist for support but at the moment there are no resources to pay for this.

Conclusion

Patients referred to hospital at home had a reduction in A&E attendances, inpatient admissions and length of inpatient stay compared to non-hospital at home patients of similar age and diagnosis.1 The average total cost per patient for the hospital at home service using 2013/2014 national prices, was £1,102, an additional cost per patient of £174 after accounting for reduction in A&E attendances and inpatient stays. However, the reduction in health care resource use equated to a total average saving per patient per year of £928 compared to non-hospital at home patients. The greatest cost saving was for patients aged 3 to 5, with a total adjusted cost saving per patient of £1,763 compared to non-hospital at home patients. The total cost per patient falls within the 95% confidence interval for potential cost savings for A&E and inpatient stays associated with referral to hospital at home and is sensitive to assumptions made about the total length of time patients are in contact with the service. As a result it is likely the service is cost neutral. The additional monetary and non-monetary benefits to patients and their families of hospital at home were not able to be incorporated into this analysis and require further investigation to establish if the service is cost effective. This is a non-randomised, observational service evaluation of patients, but provides initial evidence of the ability of hospital at home to reduce hospital attendances for this patient group.

This hospital at home service can provide effective and enhanced care for children who would previously have been in hospital. Those that access the service have positive experiences and would recommend it to others and see it as a valuable resource.

1 The evaluation adjusted for age and gender and accounted for patients referred to the Whittington hospital at home service from UCLH.

Overview This document describes the evaluation of the Whittington Health hospital at home service for children and young people, a collaborative service offered by Whittington Health and University College London Hospital. The economic analysis is only based on hospital data from Whittington Health and not UCLH due to limitations with the data analytics.

The evaluation has used a mixed methods approach to assess the hospital at home service. Interviews and surveys with families and professionals were used to capture their views and their recommendations for the service. Case studies illustrate the complexity of care and the enhanced service provided. Economic modelling has been utilised to analyse the cost effectiveness of the service.

The hospital at home model – providing care for children and young people in Islington closer to home

The hospital at home service for children and young people in Islington commenced In August 2014, following consultation with key stakeholders. Specialist community children’s nurses work in partnership with acute paediatricians at Whittington Health and UCLH to provide safe care at home for acutely unwell children and young people (0-18 years) enabling them to be discharged from hospital quicker or providing care in the community hence preventing admission.

Referrals can be made to the service from the two main hospital sites and from the existing community nursing team. Agreed care protocols were developed collaboratively by acute and community-based providers. At present the service does not take referrals directly from primary care. If the service is to expand to take direct referrals, further consultation will need to be undertaken.

The service has developed organically and continues to do so, responding to need. The current focus is on providing care for children with complex health needs out of hospital, reducing length of hospital stay, and supporting early discharge.

Hospital at home provides an additional role in providing reassurance, education, social and psychological support to families, as well as expediting referrals to other health and social care services. This service provides varying elements of support to children with differing needs including: daily liaison with secondary care providers, health monitoring, social/psychological support, nursing care, drugs administration, IV antibiotics delivery and monitoring, and sample taking. The service has undoubtedly raised the profile and enhanced communication and working relations between the secondary care and community nursing teams.

Evaluation of the model: benefits, drawbacks and cost implications

Response from parents

The families appreciate the service, which appears to fit their needs. All families who completed a survey or interview rated the care received overall as very good or good. The majority of parents had confidence in the nurse they had contact with. All parents agreed they were involved in as much decision making around care as they wanted to be. All respondents said that they would recommend

4 the service to a friend or relative in a similar situation. All comments were positive with reassurance, confidence and good communication mentioned as important attributes of the service.

Excerpts from interviews with parents: Basically, when he was discharged, he had the intravenous antibiotics for about three weeks ... but he also had to go back to school. And they went to school and gave it to him.

I don’t know what we would’ve done without them, actually, because they were absolutely amazing.

From my point of view as well it’s great because after being in hospital so often you are desperate to go home.

We would’ve had to go in and out of hospital three times, you know, three times a day when he was ... after the operation definitely. He might have had to stay there for longer which would have put him at risk of other infections. A 13 year old boy he was very good but it was very difficult for him. The minute he’d come home, he could play games, he’d be at home for meals, he could sleep at home. You know, it meant that … as far as possible we could carry on with normal life in-between the medication.

One thing that I did find that was really nice is that each nurse who came knew who the next nurse was on shift.

Response from health professionals

The nurses report feeling empowered and having ownership over the service. Secondary care paediatric teams appreciate the availability of the service and the benefits of ambulatory care for their patients.

Excerpts from interviews with staff: This is a really … highly appreciated service, and it’s working so well for the families.

Just seeing the comments from parents and hearing how much it’s helping them on a daily basis, and how reassured they are with us. And I think that keeps you going, really, and I think it’s good.

I think that it provides really excellent nursing care to the children in the home, in their own home. And, I really believe that that is where a child is going to recover better. … I just can see the difference. Having visited the kids in the hospital, seeing them again in their home, it’s just better, it just is. So that’s great.

Community nurses have been flexible where possible, allowing joint visits. This ensures continuity of care and has been particularly beneficial when a senior nurse has been able to join a colleague and pass on their experience – especially in a specific clinical area like eczema management.

This flexibility has allowed for a skill mix and grade mix which is affordable and sustainable within the service. New staff who have a relevant background, for example from paediatric A&E or paediatric inpatient wards, have been effectively deployed.

Service level implications: Positive implications of hospital at home

The flexibility and support from within the team in working across the hospital at home and the community nursing teams has allowed demand to be met, so far. This model should be sustainable as the service expands. The nurses have been able to use any time when they are not on home visits to increase their presence and improve working relationships with the secondary care teams.

Difficulties with implementation of the current system

The service has not reported any significant incidents in its first year of operation.

Some uncertainty about the value of the service has arisen because of perceptions of ownership of the service, a lack of a clear understanding of what the service provides which differs from what was available before, the lack of 24-hour care and robust evidence underpinning hospital at home.

The differences between the hospital at home service and the pre-existing community nursing team are not always clearly understood. There is a slight difference in opinion as to whether the service is consultant led, nurse led or a partnership model.

IT leads and managers have worked hard to make existing systems and referral processes as streamlined as possible (although still not ideal).

Discharge processes have been reviewed and are now much less cumbersome than they were.

Referrals may be made by junior doctors or ward staff on the request of the consultant. Some consultants are happy to do the referral themselves. Some consultant paediatricians are fully aware of the service, others need reminding.

Commissioners and providers are mindful that the hospital at home service should provide cost- benefit to the NHS as well as being desirable to patients and families. Hospital at home and enhanced ambulatory care at this stage of service development allows for earlier discharge more than avoidance of admission, and also allows families to return to the comforts and routines of their home.

Organisational level difficulties: Practice level issues

Lack of capacity has not been a problem but as the service expands this will need to be reviewed.

The community nursing team have well established links with Whittington Health and this is a familiar service to the consultants. The relationship between the community nursing team and UCLH was less established but this has improved through use of the hospital at home service.

UCLH has had to overcome initial referral difficulties by establishing the eligibility of a patient for hospital at home before they decide if a referral is appropriate. Only young people who are registered with a GP in Islington can currently access the service and this is not always immediately obvious to hospital staff. Ward round charts at UCLH have been adapted and now include GP location to overcome this problem.

Community working can be isolating for staff and raises questions about personal safety when working alone, which is one reason why the service operates from 8am -10pm. Good supervision,

6 support and practical measures have helped to address the isolation risk. The hospital at home nurses rely on public transport and are often going to addresses and locations unknown to them. Some do not get home until 1am.

The hospital at home nurses do not have a base at weekends and work out of the wards. They have dedicated workstations on the ward at Whittington Health and one is being established for them at UCLH. This presence on the ward may help with integration and promotion of the service, particularly at UCLH where referrals into the service have been slower. Work schedules have been well managed so that no nurses come off a late shift to then start an early shift.

The truncation of hours that the hospital at home service covers does limit referrals. For example, some consultants argue that if they can discharge a patient to home who does not need night-time cover (over and above being able to call the on-call consultant on the ward in the night) then they do not need a hospital at home service as the parents could manage without this.

The time-limited service also excludes those patients needing IV antibiotics, who require monitoring outside the hours of hospital at home operation. The pharmacist has sometimes been able to adjust doses to fit in with the service’s hours.

Financial disincentives for acute providers may affect referrals. Case mix and differing customary practices at different sites are reported. Although the team were able to obtain the data for the evaluation, problems were identified with patient identifiers and linkage that meant that the analysis conducted was not robust and reliable. At the time of writing discussions with the Trust are required to identify if it is possible to improve data quality and linkage so as to assess the feasibility of reporting robust results.

One significant issue is that different IT systems are used for recording health service usage at different sites. This makes accessing and comparing the data problematic. There is a need for robust data systems on activities and costs to be put in place, maintained and reviewed on an on-going basis.

Economic Analysis The aim of this analysis was to compare the health care resource use and costs for hospital at home patients compared to patients of the same age and diagnostic criteria who were not referred to hospital at home using ‘difference-in-difference’ analysis (aka before and after analysis). The economic analysis is only based on hospital data from Whittington Health and not UCLH due to limitations with the data analytics.

Patients referred to hospital at home had a reduction in A&E attendances, inpatient admissions and length of inpatient stay compared to non-hospital at home patients of similar age and

7 diagnosis.2 The average total cost per patient for the hospital at home service using 2013/2014 national prices, was £1,102, an additional cost per patient of £174 after accounting for reduction in A&E attendances and inpatient stays. However, the reduction in health care resource use equated to a total average saving per patient per year of £928 compared to non-hospital at home patients. The greatest cost saving was for patients aged 3 to 5, with a total adjusted cost saving per patient of £1,763 compared to non-hospital at home patients. The total cost per patient falls within the 95% confidence interval for potential cost savings for A&E and inpatient stays associated with referral to hospital at home and is sensitive to assumptions made about the total length of time patients are in contact with the service. As a result it is likely the service is cost neutral. The additional monetary and non-monetary benefits to patients and their families of hospital at home were not able to be incorporated into this analysis and require further investigation to establish if the service is cost effective. This is a non-randomised, observational service evaluation of patients, but provides initial evidence of the ability of hospital at home to reduce hospital attendances for this patient group.

Future steps and recommendations

The hospital at home service plans to broaden the range of conditions the service covers and to embed internal evaluation processes in the near future. All agree that expanding the service to reduce inpatient stays for oxygen (for bronchiolitis) will have an impact on admission rates.

The capacity of the pharmacy team should be reviewed, as its role will expand. The hospital at home service requires an experienced senior pharmacist for support but at the moment there are no resources to pay for this.

The purpose of hospital at home has to be restated when new junior doctors start rotations who have not experienced the service before (though some may have come across it already if they had previously worked on a neonatal ward).

Conclusion

This hospital at home service can provide cost effective and enhanced care for a range of children who would previously have been in hospital. Those that access the service have positive experiences and would recommend hospital at home to others. The majority of professionals involved in referring in to the service see it as a valuable resource. There is potential for this service to expand to include patients with a wider range of diagnostic conditions, to accept referrals from primary care to avoid A&E attendances and inpatient admissions altogether, but these changes should be allowed to evolve at a realistic schedule to allow embedding within the current provision.

Keywords: Children, neonate, paediatrics, young people, hospital at home, evaluation

2 The evaluation adjusted for age and gender and accounted for patients referred to the Whittington hospital at home service from UCLH.

Glossary

CCG Clinical Commissioning Group

CCN Children’s Community Nursing

CCTH Care Closer to Home

ED Emergency department

EMIS Egton medical information services

EPR Electronic patient record

GP General practitioner

H@H Hospital at home

HES Hospital Episode Statistics

IV AB Intravenous Antibiotics

LOS Length of Stay

NP Nurse Practitioners

NSF National Service Framework

Paed Paediatric

UCLH University College London Hospital

UCLP University College London Partners

Table of Contents

Evaluation team 1 Acknowledgements 1 Further information 1 Executive Summary 2 Glossary 9 Table of Contents 10 List of Appendices 12 Background 13 Health needs of young people in Islington 13 Rationale for service improvement 13 Development of the service 14 Service description 15 Operation of the service 16 Inclusion criteria 16 Exclusion Criteria 17 Evaluation Plan: Aims and objectives 17 Methods for evaluation 18 Ethics 18 Views of the service team and views of the referrer team 18 Case studies 19 Views of the families 19 View from primary care 20 Qualitative data analysis 20 Health Service use 20 Findings 21 Observational study 21 Changes to note during the embedding phase of the hospital at home service 21 Cost-effectiveness 22 Grid 1: List of ICD10 codes for patients eligible for hospital at home 25 Views of the service team 39 Views of the referrer team 41 Other key people interviewed include the pharmacist and IT developer who have helped develop and support the service. Selected quotes are found in Appendix 2 Selected quotes from interviews with the hospital at home referrer team 41 Views of the families 44 Parental survey 44 Parental interviews 44

Shadowing 45 Case studies 46 Case study from family 1 (provided by hospital at home team) 47 Case study from family 2 (provided by hospital at home team) 48 Views from primary care 49 Service outcomes 50 Clinical effectiveness 50 Equality Impact Analysis 50 Ethnicity 50 Re-admissions 50 Conclusion and recommendations 52

LIST OF APPENDICES and EVALUATION TOOLS 55 References 214

List of Tables

TABLE 1 SELECTED QUOTES FROM INTERVIEWS WITH THE HOSPITAL AT HOME SERVICE TEAM 56 TABLE 2 SELECTED QUOTES FROM INTERVIEWS WITH THE HOSPITAL AT HOME REFERRER TEAM 78 TABLE 3 HOSPITAL AT HOME NPT QUESTIONNAIRE (N=17) 126 TABLE 4 SELECTED QUOTES FROM INTERVIEWS WITH FAMILIES WHO HAVE EXPERIENCE OF THE HOSPITAL AT HOME SERVICE 129 TABLE 5 FRAMEWORK FOR CASE STUDIES FOR HOSPITAL AT HOME SERVICE 140 TABLE 6 READMISSION FROM HOSPITAL AT HOME FROM ALL REFERRALS TO MID SEPTEMBER 2015 46

List of Appendices

APPENDIX 1 TABLE 1: SELECTED QUOTES FROM INTERVIEWS WITH THE HOSPITAL AT HOME SERVICE TEAM 56 APPENDIX 2 TABLE 2: SELECTED QUOTES FROM INTERVIEWS WITH THE HOSPITAL AT HOME REFERRER TEAM 78 APPENDIX 3 TABLE 3: HOSPITAL AT HOME NPT QUESTIONNAIRE (N=17) 126 APPENDIX 4 SELECTED QUOTES FROM INTERVIEWS WITH FAMILIES WHO HAVE EXPERIENCE OF THE HOSPITAL AT HOME SERVICE 129 APPENDIX 5 CASE STUDIES A-F 135 APPENDIX 6 TABLE 5: FRAMEWORK FOR CASE STUDIES FOR HOSPITAL AT HOME SERVICE 140 APPENDIX 7 ECONOMIC ANALYSIS 144 APPENDIX 8 CHILD HEALTH PROFILE ISLINGTON JUNE 2015 162 APPENDIX 9 LIST OF ORIGINAL 15 HOSPITAL AT HOME TREATMENT CONDITIONS 166 APPENDIX 10 PATHWAYS OF CARE WITH PROCESS INDICATORS (STANDARD CARE) 167 APPENDIX 11 PATHWAYS OF CARE WITH PROCESS INDICATORS (HOSPITAL AT HOME) 168 APPENDIX 12 PROCEDURE FOR REFERRAL TO HOSPITAL AT HOME 169 APPENDIX 13 PROCEDURE EMERGENCY TRANSFER TO WARD 170 APPENDIX 14 EQUIPMENT REQUIRED 171 APPENDIX 15 CONSENT FORM USED BY IMPLEMENTATION TEAM WITH PARENTS WHO HAVE ACCESSED THE SERVICE 172 APPENDIX 16 FRAMEWORK FOR CASE STUDIES 173 APPENDIX 17 GENERAL PRACTITIONER SURVEY 175 APPENDIX 18 RESPONSES TO GENERAL PRACTITIONER QUESTIONNAIRE FOR HOSPITAL AT HOME SERVICES FOR YOUNG PEOPLE 179 APPENDIX 19 DATA REQUESTED FOR EVALUATION OF SERVICE USE 182 APPENDIX 20 SERVICE PROMOTION MATERIALS 185 APPENDIX 21 MINUTES AND NOTES FROM HOSPITAL AT HOME QUARTERLY MEETINGS 186 APPENDIX 22 SERVICE PROVIDER INFO & CONSENT HOSPITAL AT HOME 189 APPENDIX 23 SERVICE PROVIDER INTERVIEW SCHEDULE HOSPITAL AT HOME 191 APPENDIX 24 SERVICE PROVIDER INTERVIEW SCRIPT HOSPITAL AT HOME 203 APPENDIX 25 SERVICE PROVIDER SECONDARY CARE INTERVIEW SCHEDULE HOSPITAL AT HOME 207 APPENDIX 26 HOSPITAL AT HOME ISLINGTON PARENTAL INTERVIEW INVITE 209 APPENDIX 27 HOSPITAL AT HOME ISLINGTON PARENTAL INTERVIEW SCHEDULE 210 APPENDIX 28 HOSPITAL AT HOME YOUNG PERSON’S INTERVIEW GUIDE 212

Background Health needs of young people in Islington In 2014 the 0-18 year old population of Islington was approximately 40,500.i Almost 40% of the young people under 18 were from the White-British ethnic group, and almost a quarter were from Black, African, Caribbean, or Black British ethnic groups. The remainder were from mixed ethnic groups, Asian or Asian British, and Other White groups. Among those from Asian ethnic groups the

Bangladeshi or British Bangladeshi account for the largest group.ii The level of child poverty has fallen in Islington in recent years, but the level remains high with 32.4% aged 0-16 living in poverty (ChiMat, 2016). Islington’s children and young people generally experience a high level of poverty and associated risk factors compared to London and England 12 overall.

Islington has two main paediatric providers, Whittington Health, mainly serving north Islington and University College London Hospital (UCLH), mainly serving the south of the borough. Islington has the third highest rate of paediatric outpatient attendances in London. In 2012/13 there were about 7,400 attendances, equivalent to a rate of 37 per 1,000 population. Half of all paediatric outpatient attendances resulted in discharge at first appointment, suggesting reasons for referral may need review. iii

The rate of A&E attendances among children aged under 5 is higher in Islington than in England as a whole. In 2013/14, there were 8,400 attendances among this group, a rate of 642 per 1,000 population. Young people aged 19-25 account for a higher number of A&E attendances (11,400) compared to under 5s, but the rate is lower (476 per 1,000). This could be due to the age profile of children and young people in Islington; 6% are aged 0-4 and 14% are aged 5-19. The high A&E attendance rate suggests that many parents are choosing to use A&E services as a means of accessing rapid assessment by a doctor, in the absence of any alternatives closer to home.iii

Emergency hospital admissions for asthma, epilepsy or diabetes for under 19s in Islington are higher than the London average and in the top quartile for England. Recent quarterly data shows that Islington CCG’s rate of emergency admission for lower respiratory tract infection in under 19s is also above the London average.

In 13/14, Islington CCG spent approximately £23m on health services for children and young people aged 0-17 years. Of this spend, £7.8m was spent on acute (hospital) services, mainly at Whittington Health and UCLH.iii

Rationale for service improvement National guidance and policy such as the NHS Outcomes framework 2013-14 and Standard 6 of the National Service Framework (NSF) for children, young people and maternity services is that care for critical areas should be provided as close to home (CCTH) as possible for ill children.iv v The underlying driver is that children will benefit if they can be cared for out of hospital in appropriate

13 settings. This in combination with the potential for better use of NHS resources and advances in treatment and care mean that more young people can be cared for in the home environment.

This care is traditionally provided by community children’s nursing teams although different models for providing care closer to home exist. Reviews of the differing models of CCTH for young people have identified factors influencing the development and delivery of services. One review of the literature of differing models for children’s community nursing services highlighted difficulties in communication between hospital and community based staff. The author concluded that to ensure provision of continuity with care at home the clinical responsibility should remain with the consultantvi. The NIHR commissioned the University of York to evaluate current UK models of care for children and young people.xviii Interviews with staff highlighted a range of factors influencing the development and delivery of CCTH both at the organisational and practice level. Practice level issues included team capacity, staff ability and capability, staffing, office hours, cover over evenings and weekends. There was an imperfect understanding amongst staff of the role and purpose of CCTH. Families preferred CCTH and reported feeling better supported socially and psychologically by CCTH staff. An economic analysis judged CCTH to be better for children with complex and long term needs. However there were issues with the quality and availability of data on costs and caseload contacts.

The literature on shifting acute care from a hospital to the community indicates that hospital at home services do not show differences in health outcomes when compared with inpatient care but that there is increased patient and family satisfaction.vii In hospital at home services length of stay is variable with some reporting shorter and some reporting longer lengths of stay than inpatient care.viii ix x xi Effectiveness is dependent on the condition of the patientviii or diagnosis or treatment, such as intravenous antibiotics at home.xii xiii xiv xv xvi Evaluations of hospital at home services have focused upon clinical outcomes, days to discharge, changes in symptom severity, patient satisfaction, readmission rates, mortality rates, functional status and quality of life.viii ix xvii There is a lack of robust evidence on cost comparisons of care closer to home and hospital based carexvii and the effects of hospital at home services on heterogeneous groups of patientsviii including young people.xviii

To meet the health needs of the young people in the community, Islington CCG and Islington Council focused on Priority six of the Children and Young People’s Health Strategy 2015 – 2020, to improve access to timely care and treatment for children and young people who are acutely unwell. Commissioning the hospital at home service was part of the strategy to meet this priority and improve key outcomes.iii

The Islington hospital at home service for children and young people is an innovative service. The CCG commissioned an evaluation of service, to take place within the first year of its development.

Development of the service In June 2013 Islington Clinical Commissioning Group set in place the business plan to extend the operational hours and the scope of work of the Community Children’s Nursing (CCN) service to provide nursing care at home (project CYP22 – Improving Access – Extended Services for Community Children’s Nurses (CCNs)).

It was anticipated that the extended hours would enable more children to receive nursing care out of hospital, for example intravenous antibiotics for a wide range of infections, wound care, setting up overnight sleep studies, evening injections for children with juvenile idiopathic arthritis, blood tests, nursing assessments and monitoring visits for children with acute episodes of illness (especially related to asthma), and feeding problems associated with ill health, especially for children with long term conditions, e.g. sickle cell disease. This would enable the development of a children’s hospital at home service for children from both UCLH and Whittington Health to ensure that children and young people are admitted to or stay in hospital only when it is clinically unsafe to care for them in the community.

These measures would in turn improve patient experience, providing a high standard of care at home by a dedicated team of nurses, reducing length of hospital stays and reducing attendance at hospital to enable more children to be seen after school, thus reducing the impact of their condition on their long term development.

The existing work force was supplemented with additional staff to enable the team to run a rota to cover extended evening hours during weekdays and weekends. This enabled the nursing team to provide a full service to current and newly referred patients with a range of nursing needs, for longer periods across the week.

Service description In July 2014 after a period of extensive consultation with key multi-disciplinary stakeholders from Whittington Health, UCLH, Islington CCG and the Northern Health Centre the scope, safety criteria and evidence based clinical pathways for hospital at home were established. Hospital at home aims to avoid preventable hospital admissions, prevent A&E department presentations and shorten length of stay in hospital by ensuring children receive care at the right time, in the most appropriate place with the best use of resources. The aim of the service is to achieve the following outcomes:  Improved patient experience during episodes of acute illness or exacerbations of chronic illness that would traditionally be managed in secondary care.  Reduced disruption to family life by relocating treatment for selected conditions to the home environment.  Improved quality of life.  Reduced risk of hospital acquired infections. In doing so it will achieve the following strategic objectives:  Provide continuity of care at reduced cost.  Further support integrated care by Community Children’s Nurses.  Meet the requirements of the National Outcomes Framework.  Reduce A&E attendances and non-elective admissions.  Increase equity of service for the 16-18 year old cohort. These outcomes and objectives will be achieved through:

 The provision of a community nursing team working closely with paediatricians to accept children from Islington GP’s, Islington Community Paediatricians, School nurses in Special needs schools, midwives, health visitors, the paediatric emergency department, children’s ambulatory care and neonatal and children’s wards at UCLH and Whittington Health for hospital at home care.  Providing on-going hospital type care at home whilst the condition of the child requires it or until GP based community provision can take over.  The on-going assessment of children from the paediatric emergency department by actively promoting the service within the children’s departments.

Operation of the service The service operates from 08:00 to22:00 hours seven days a week. All clinical encounters, face-to-face or over the phone, are recorded on patient held records, all patients admitted are entered into the electronic patient record system. At discharge letters are sent to the patient’s general practitioner. The hospital at home team works closely with the Paediatric Emergency Departments, acute assessment units, and children’s wards at UCLH and Whittington Health to review and assess patients who may be suitable for hospital care at home. The eligibility and exclusion criteria are shown below.

Inclusion criteria Patients eligible for hospital at home must have one of the following working diagnoses: • Gastroenteritis • Resolving Sepsis (typically discharged from the ward) • Cellulitis • Periorbital Cellulitis • Pneumonia • Infected Eczema • Feeding problems: Transition to bolus feeds/normal feeding (typically discharged from the ward) and care for neonates with feeding difficulties • Babies with jaundice • Croup • Asthma exacerbation • Viral Induced Wheeze • A long term condition plus viral upper respiratory tract infection (e.g. congenital cardiac condition+ URTI where feeding or breathing maybe affected) • Bronchiolitis • Febrile convulsion

Other diagnoses are considered after discussion with the hospital at home matron or nurse on shift and attending consultant. The child or young person must be registered with an Islington GP and be under 18 years of age In addition the child or young person must have a working diagnosis of one of the acute diagnoses in the inclusion list and needs: • intervention that can be safely given in the community

• and/or regular monitoring to assess trajectory of illness • and/or carer needs support to look after child at home

Exclusion Criteria If the child or young person has any of the following exclusion criteria they are not eligible: Activity • Lethargic/difficult to rouse • Weak, high pitched or continuous cry Temperature • Temp ≥ 38°C in 0-3 month Respiratory • RR>60 in 0-12 months • RR>40 in > 12 months • Oxygen saturation <92% • Too breathless to talk • Too breathless to feed • Apnoeas, Marked recession, Grunting/significant nasal flaring, Stridor at rest Circulation and hydration • Abnormal blood pressure • No/Minimal oral intake • Vomiting all oral intake • Capillary refill on chest > 3 seconds • Bloody/mucous diarrhoea • Bile stained vomiting • Drooling Neurological status • Focal seizures or focal neurological signs • Neck stiffness  Skin • Non-blanching rash • Pale/mottled/ashen blue

Evaluation Plan: Aims and objectives The integrated evaluation plan was co-produced with the hospital at home team. The UCLP hospital at home evaluation aims to assess the service model in terms of impact on health service usage, effectiveness of care, user experience, and costs to the health system. The evaluation’s objectives are to:

1. a. Compare the rates of admission of children with 5 of the potential 15 coded tracer conditions3 before and after the introduction of the hospital at home service. b. Assess length of stay from referral to discharge for key tracer conditions.

3 The initial aim was to limit it to 5 conditions but this became unworkable as so many other cases were good candidates for the hospital at home service.

2. Gain a deeper understanding of the experiences of parents who have used the hospital at home service and the views of health care providers about the barriers and facilitators of an effective service.

3. Record process indicators of service use.

4. Estimate the cost and potential cost savings of the model from the perspectives of both the NHS and the family.

Methods for evaluation This collaborative, multi-faceted evaluation plan includes quantitative and qualitative analyses addressing each of the objectives outlined above.

Ethics The Health Research Authority (HRA) considers this study to be a service evaluation (not research) and NHS REC ethical approval was therefore not required for this evaluation.

Views of the service team and views of the referrer team Individual semi-structured interviews were conducted with key stakeholders (the service team, service managers, referrers from the two hospital trusts, those responsible for pharmacy support and IT development). Interviews were chosen because they give participants the opportunity to lead the discussion,xix xx be confident that data will be kept confidential and because questions can be tailored through active listening so that the interviewer can gain a detailed understanding of the participants’ subjective experience of their role in the service. A key aim of the interviews was to gather perceptions and opinions from people in different positions in order to assess the perceptions and experiences of the hospital at home service within context. The following illustrative questions were dependent upon the interviewees’ role:  Describe your involvement with the hospital at home service?  Describe the Care pathway to service from initial entry into health service.  Could the referral process be improved?  Could you describe the discharge process?  Thinking of your last few cases where would care be provided if this service was not available?  How does the service deal with diverse conditions and needs?  Are there any difficulties in providing the service?  Do you feel supported in your role?  Are there any additional aspects of the service you plan to provide in the future?

 How does the service impact on the patient and family experience?  What are the challenges to the service?

The interviews were carried out face-to-face where possible or by telephone depending on the preference or availability of the person being interviewed. In all cases consent will be sought. Interviews were tape-recorded. There was consistency in interviewers which allowed for a continuous iterative process in which subsequent interviews were informed by earlier interviews (see Appendix 22 Service provider info & consent hospital at home, Appendix 24 Service provider interview script hospital at home and Appendix 25 Service provider secondary care interview schedule hospital at home).

Case studies

In-depth case studies were identified with the help of the service team. These were structured to capture safeguarding, clinical effectiveness and case complexity.xxi Case studies were chosen as they can illustrate the quality, safety and effectiveness of the hospital at home service. In addition they also demonstrate the uniqueness and the value added by this service in comparison to the standard care. A framework for case studies was developed in collaboration with the service team to reflect the case mix (see Appendix 16 Framework for case studies).

Views of the families User satisfaction and experiences of health care were assessed after discharge from the service by using a mixed methods approach.2

All families who had experience of the hospital at home service were asked by the service team to complete a brief survey. Development of this post discharge questionnaire for parents and children involved a review of standardised questionnaires used to obtain patient (family and young person) feedback.

We also asked the service team to seek consent from parents and from young people who have used the service and who are aged 8 years or over, to pass on their contact details to the evaluation team (stage 1) (see Appendix 15 Consent form used by Implementation Team with Parents who have accessed the service).

If consent was obtained at stage 1, the evaluation team sought consent from families and young people to participate in an interview study. Sufficient time was taken to explain what this participation would entail, that anonymity would be maintained and that any decision they made about participation will not have a negative impact on any future care received. All consenting families and young people were informed that they could withdraw from the evaluation at any time (see Appendix 26 Hospital at home Islington parental interview invite). A key objective of the interviews was to gather perceptions and experiences from people who have been referred to the hospital at home service (see Appendix 27 Hospital at home Islington parental interview schedule & Appendix 28 Hospital at home Young person’s Interview Guide). The following are illustrative questions:

 Background to child’s condition  About the hospital at home service When did you became aware of the service?  Were you given enough information about hospital at home service before you made the decision to use this service?  What were your expectations from the hospital at home service?  Did the hospital at home service meet your expectations? Questions to explore the experience of using hospital at home service:  What did you like about the service?  What did you ‘not’ like about the service?  What was the impact of using hospital at home service on your daily life?  Were you provided with the treatment plan?  If you had not used the hospital at home service what do you think would have happened?  How did your child find hospital at home service?  Do you have any suggestions or improvements for the hospital at home service?  Overall, how would you rate your experience of using hospital at home service?  Would you use the hospital at home service again?  Would you recommend your friends and family to use the hospital at home service?

View from primary care Opinions were sought from GPs about their awareness of the hospital at home service, and about the potential for referrals to hospital at home from primary care. An online survey was made available to GPs in Islington and highlighted in the CCG GP Bulletin (see Appendix 17 General Practitioner Survey).

Qualitative data analysis Interview data are presented to allow comparisons between groups against broad themes.xx Initially, thematic analysis was conducted on each individual interview to generate a set of themes and example quotes extracted.

Health Service use We compared the rates of admission for children aged from 0-18 years with 5 of the potential 15 coded tracer conditions before and for a minimum of 6 months after the embedding of the hospital at home service. Secondary outcomes included length of health service contact from admission to discharge as recorded in hospital based records and the total number of health service contacts, including A&E department contacts around each episode using hospital episode statistics. All data from before the hospital at home initiative was initiated was collected retrospectively from hospital records. Tools for data capture were developed and finalised with the data managers at the Whittington Health and UCLH sites, see Appendix 19 Data requested for evaluation of service use for the data requested.

All data from before the launch of the hospital at home initiative was collected retrospectively from hospital records. The process evaluation collected data at set time points throughout the length of health service contact, as highlighted in Appendix 10 Pathways of care with process indicators (standard care) and Appendix 11 Pathways of care with process indicators (hospital at home).

Findings

Observational study Regular teleconferences with the community nursing team and attendance at team meetings (agendas available upon request) provided an understanding of the achievements of the service and the challenges it faced. A rapid appraisal of the key relevant literature on CCTH and other UK models was completed. We have collaborated with colleagues in the Social Policy Research Unit at the University of York to exchange knowledge.

The aims of the hospital at home initiative are:  To improve patient experience during episodes of acute illness or exacerbations of chronic illness that would traditionally be managed in secondary care  To reduce disruption to family life by relocating treatment for selected conditions to the home environment  To improve quality of life  To reduce risk of hospital acquired infections

Through addressing these aims the hospital at home initiative would provide care at a reduced cost, further support integrated care via community children’s nurses, meet the requirements of the National Outcomes Framework, reduce A&E attendances and non-elective admissions and increase the equity of service for 16-18 year olds.

These aims were to be achieved through three key actions: 1) The provision of a community nursing team that will work closely with paediatricians to accept children from Islington GPs, Islington Community Paediatricians, School nurses in Special needs schools, midwives, health visitors, paediatric emergency departments, children’s ambulatory care and neonatal and children’s wards at UCLH and Whittington Health for hospital at home care. 2) The provision of on-going hospital type care at home whilst the condition of the child requires it or until GP based community provision can take over. 3) The on-going assessment of children from the paediatric emergency department by actively promoting the service within the children’s departments.

Changes to note during the embedding phase of the hospital at home service The hospital at home service did not become fully operational as planned and there was a delay in referrals. The hospital at home service started to accept referrals from Whittington Health from 18th August 2014 and one month later for UCLH. This delay was due in part to the consultation period with key stakeholders about development and

21 operational procedures for the service, and the establishment of agreements for governance and safeguarding. In particular there was a delay in agreement on the neonatal pathways hence neonates with conditions such as jaundice were not referred into the service. This has had implications on the conditions evaluated as these cover categories of the high cost, low volume and low cost, high volume initially included in the evaluation plan.

The service does not receive referrals directly from primary care. This again has been due to problems around paediatricians’ accountability and governance, and cautious development of the service.

Changes were also noted in the IT systems used for the recording of the hospital data and of different referral systems being used at the two key hospital sites. Whittington Health had significant changes to the IT databases in recording the data from 21st September 2013. This has altered the benchmarking data collected for the month including and prior to September 2013. Pre-hospital at home data has been collected from the month of October 2013 but for an extended period beyond the initial first six months of service operation up until the end of July 2015.

The hospital at home team has spent a large amount of time developing the data recording and IT platforms in use. This has been continually reviewed and recording has shifted from the Medwayxxii electronic patient record to RIOxxiii for recording hospital at home data. UCLH refer to hospital at home service via a drop down menu on a third EPR, Anglia ICE.xxiv This has had implications for the evaluation in accessing, retrieving and comparing data. Furthermore, hospital at home data is collected prospectively and the evaluation has been dependent upon when the datasets were received by the evaluation team.

Cost-effectiveness The aim of the economic analysis is to compare the health care resource use and costs for hospital at home patients compared to patients of the same age and diagnostic criteria who were not referred to hospital at home using difference-in-difference analysis. The economic analysis is only based on hospital data from Whittington Health and not UCLH due to limitations with the data analytics. Hospital at home resource use and Whittington hospital attendances for UCLH patients referred to hospital at home are included in the analysis for costing purposes. The aim of this analysis is to compare the health care resource use and costs for H@H patients compared to patients of the same age and diagnostic criteria who were not referred to H@H using ‘difference-in-difference’ analysis (aka before and after analysis).

Methods

Difference-in-Difference

Difference-in-difference is a form of analysis commonly used by economists using observational datasets.

Step one is to look at the changes that have occurred in the intervention group, in this case H@H, before and after the intervention was implemented. For this analysis the implementation date is the date the patient was referred to H@H.

The problem with observational data is that as patients are not randomly allocated to the intervention it can be hard to tell if the changes that occur over time would have occurred anyway even if the intervention had not been implemented. To try to control for this a comparator group as similar as possible to the intervention group are identified. In this case it is patients that attended the A&E or were admitted to the inpatient ward that were eligible for H@H because of their diagnosis and age but not referred to the service. Their hospital use over time before and after the intervention are then observed.

As implementation of the new service does not happen instantaneously a “phase of change” is included in the analysis. This is after the first patient was referred to H@H but after a sufficient amount of time for H@H to have become embedded in the service, for learning to have occurred and for confidence in the service to be established. This “phase of change” is 6 months after the first patient was referred to H@H. All patients after this phase are then considered to be in the intervention phase.

If a greater change is observed after the “phase of change” compared to before for the intervention group, H@H, compared to the comparator then a significant change is assumed to have occurred as a result of the intervention (see figure 1 for a visual representation of the analysis). As the groups are likely to differ systematically, given this is not a randomised control trial with tightly controlled parameters for inclusion and exclusion, other explanatory variables are controlled for by being included in the statistical analysis.

Figure 1: Graphical representation of Difference in Difference

PHASE OF CHANGE

Data

Data was extracted from the Whittington hospital system during week commencing 1 February 2016 for all patients under the age of 18 who had an A&E attendance or inpatient admission between October 2012 and January 2016 and were eligible for H@H based on a limited number of ICD-10 diagnostic codes. The diagnoses eligible for H@H are reported in Grid 1 below. Patients with A&E attendance were reported separately to those with an inpatient stay and H@H patients. A unique identifier was created to link patient A&E attendances and inpatients admissions, and to identify H@H patients versus non H@H patients, hereafter called comparator patients. Patients with no NHS number were included in the analysis but were given a randomly generated number to identify them.

Grid 1: List of ICD10 codes for patients eligible for hospital at home Diagnosis Description ICD-10 Diagnosis Codes

Gastroenteritis Any beginning with A08, A09 or K52

Acute Viral J10.8 & J11.8 (Influenzal gastroenteritis) gastroenteritis A02.0 (gastroenteritis due to salmonella)

Resolving Sepsis Any beginning with A40 or A41

Potentially R65.1 - Systemic Inflammatory Response Syndrome of infectious origin with organ failure (Severe sepsis)

Fever unspecified for R50.9 “excluding sepsis IV antibiotics”

Cellulitis [Any beginning with L03]

ICD-10: L039

Plus

OPCS: X292

Periorbital Cellulitis H05.0, L01.1

Pneumonia [Any beginning with J12 – J18]

Bacterial pneumonia [Any beginning with P23 (Congenital pneumonia)]

Infected Eczema Bacterial [Eczema codes begin with L20 – L30] infected eczema needing antibiotics

Infected eczema ICD-10: L303

Diagnosis Description ICD-10 Diagnosis Codes

Plus

OPCS: X292

Feeding: Transition to ICD-10 covers diagnosis not treatments bolus feeds/normal OPCS Classification of Interventions and Procedures Code G38.3 = feeding Open insertion of feeding tube into stomach

Babies with jaundice with [Any beginning with P58 or P59] phototherapy

ICD-10: P599 Babies with jaundice Plus without phototherapy

OCPS: S129 (if had phototherapy)

Croup [J05.0]

Acute Viral Croup

Asthma exacerbation J46 - Status asthmaticus, Incl.:Acute severe asthma

Other asthma codes are those beginning with J45

Viral Induced Wheeze [Only one code for wheezing – R06.2] Acute viral induced wheeze

Long term condition plus Asthma – any beginning with J45 viral upper respiratory tract infection Diabetes – any beginning with E10-E14 Epilepsy - any beginning with G40-G41

Upper respiratory tract infections - Any beginning with J00-J06, plus J30-39 group is for ‘other diseases of upper respiratory tract’

Bronchiolitis [Any beginning with J21]

Diagnosis Description ICD-10 Diagnosis Codes

Febrile convulsion [R56.0]

Febrile child (rule out sepsis)

ICD-10: P819 (neonates) or R509 (older)

Plus

OPCS: S292

Neonate with feeding Any beginning with P92 difficulties

Index month and analyses

An index month was created for all H@H patients to identify when the patient was referred to H@H. The purpose of the index month was to ensure that any costs for the health problem that may have occurred before they were referred to H@H, and hence caused the referral, were not included in the costs for H@H. For patients who were not H@H two index months were created (i) one when H@H started (August 2014) (ii) one 6 months later after H@H had enough time to be set up and be running as expected (January 2015). Any admissions or A&E attendances that occurred between August 2014 and January 2015 were not included in the analysis. All admissions before and after were only included for H@H patients referred to H@H after the “phase of change”. For patients who were referred to H@H during that phase their admissions and A&E attendances were not included. The following was then calculated for before the “phase of change” and after the “phase of change” for each patient or for the date of H@H referral for H@H patients whose first referral was after the end of the “phase of change”:

1. Number of A&E attendances

2. 0Total cost of A&E attendances

3. Number of inpatient admissions

4. Length of stay of inpatient admissions

5. Total cost of inpatient admissions

6. Total acute hospital costs (A&E plus inpatient)

The percentage of patients with service contacts (A&E attendances and inpatient admissions), mean number for only those with service contacts and mean number for all patients was calculated for October 2012 to August 2013 (year 1), September 2013 until July 2014 (year 2) and August 2014 to September 2015 (year 3). To account for differences between patients in H@H and patients not

27 referred to H@H, patient level regression analysis was run adjusting for age and gender. The analysis also included some patients who were referred to H@H from a source other than the Whittington, most commonly University College Hospital (UCLH). These patients could have inpatient admissions and hospital attendances at the Whittington only after they were referred to H@H, hence skewing the analysis to suggest that hospital attendances only occurred after. To account for this a variable for Whittington versus not Whittington referrals was included in this analysis. The patient level regression with adjustments for age, gender and if the patient was referred by the Whittington was used to calculate the difference-in-difference effect and produce graphs of average costs before versus after the implementation of H@H. A negative binomial model has been used to account for the high number of zeros in the data.

Follow-up in the after period for all non H@H patients was 1 year. For H@H patients’ follow-up duration could be from 1 year to 1 month: their ‘after’ period starts the month after referral to H@H. Duration of follow-up was included in the model to adjust for this difference.

Month and year of birth were available for all patients. Age was calculated as the age of patients at their earliest captured hospital contact.

All analyses were undertaken in Stata version 12.

Costs:

The weighted average costs of an A&E attendance for admitted versus not admitted attendances was taken from the NHS 2013-2014 Reference costs. These were calculated as £109 per attendance, not admitted and £167 per attendance, admitted.

Costs for inpatient stays were predominately taken from 2013/2014 Payment by Results (PbR) costs calculated by HRG. Patients were identified as having had a planned or elective inpatient admission or alternatively a non-elective admission to determine costs. Costs for additional bed days past trim points were also included in the analysis. For some HRGs no PbR tariff was available. Instead National Reference costs for 2013/2014 were used.

The cost of per patient for the hospital at home service was calculated using staffing, consumable and overheads provided by Whittington. The cost of the hospital at home service was costed at national 2013/2014 costs to be comparable with the A&E and inpatient costs used. The most recent six months of hospital at home referral and discharge data (from 25th June 2015 to 26th January 2016) were multiplied by two and used to estimate the total number of patient contact days per year for the hospital at home service. The total cost per patient for hospital at home was then calculated as the number of days between referral to hospital at home and discharge multiplied by the cost per contact day.

Results

28 comparator patients (not H@H) being male compared to 58% of the H@H patients (chi2=0.805 p=0.370). The groups though did not significantly differ in age for inpatient admissions (chi2=8.41 p=0.08) (see Figure 2) (chi2=25 p<0.001), but did for A&E attendances with 70% of the H@H group being below the age of 2 at the first A&E attendance captured compared to 48% for the comparator group (chi2=69 p<0.01) (see Figure 2). This has been accounted for in the adjusted analyses by including age as a variable in the analysis. Total costs have also been reported by age.

Inpatient admission

The two groups had small differences between admissions source, the most notable being that H@H patients had slightly more admissions through A&E (see table 2). 17 admissions also occurred as a result of referrals made from H@H. There appear to be some data coding errors for 2 patients that were referred from H@H but are not recorded as H@H patients.

Inpatient admissions and A&E attendances analysis

Table 3 reports the unadjusted percentages for H@H patients versus comparators before after implementation. The comparator figures appeared to stay stable over time, whereas there appears to be a reduction for H@H patients in inpatient admissions. No reduction is seen in A&E attendances in the unadjusted analysis. This is likely to be because of the large number of 0-2 year olds in the H@H A&E attendances group: they are not old enough for an A&E attendance to have taken place in the years before referral to H@H. This is adjusted for in the next analysis.

Figure 4 reports the adjusted total costs for all for all patients before versus after implementation of H@H.

Table 4 reports the results of the difference- in-differences analysis. Because rates of inpatient admissions were low across the combined dataset (A&E combined with inpatient stays for all patients) only patients with an admission were included in the analysis for costs of inpatient stays. The reason for this was to compare patients that were more alike. For A&E and total costs all patients are included in the analysis.

In the adjusted analysis there is a significant reduction across all analyses for both groups with a significantly greater reduction for the H@H group. For patients admitted to inpatient care, H@H saves £553 per patient. Including all patients and A&E attendances it saves £928 per patient for the year directly after referral to H@H. This does not include the cost of the H@H service. Any longer term benefit of H@H is not clear given that a maximum of 1 year follow-up is possible.

The total yearly cost of hospital at home adjusted to 2013/2014 average national costs, so that the cost of hospital at home is comparable to the inpatient and A&E costs, is £344,468 per year. Between the 25th June 2016 and the 25th January 2016 there were 1,048 patient contact days with an average length of contact of 6.7 days (95% confidence interval (CI) 4.8 days to 8.6 days) and cost per contact day of £164. Patients not yet discharged were censored at the 25th of January 2016 for length of stay. The average total cost per patient was £1,102 (95% CI £786 to £1418), for a total additional cost of £174 per patient (95% CI -£318 to £668) once the reduced cost of A&E attendances and inpatient admissions has been removed from the total cost. This figure though is sensitive to assumptions made about the number of contact days for the service and is not significantly greater than zero. As a result it is likely that the service is cost neutral.

Analysis of total cost savings by age is reported in Table 5 and Figure 5. The greatest cost saving is for patients aged 3 to 5, with a total cost saving per patient of £1,763.

Figure 2: Percentage of patients of each age at first captured admission: Inpatients, H@H versus comparator

Figure 3: Percentage of patients of each age at first captured admission: A&E attendances, H@H versus comparator

Grid 2: Admission source inpatient stays (number and percentage)

Admission Source Hospital@ Home Comparator

Accident and Emergency 173 2,515

78.64% 70.83%

Booked 1 23

0.45% 0.65%

Born in hospital 8 499

3.64% 14.05%

Born outside hospital 0 2

0% 0.06%

Children's Hospital at Home 17 2

7.73% 0.06%

Emergency - Bed bureau 1 36

0.45% 1.01%

Emergency - GP 0 6

0% 0.17%

Emergency - OP clinic 7 196

3.18% 5.52%

Maternity - ante-partum 0 7

0% 0.2%

Maternity - post-partum 0 3

0% 0.08%

Other immediate 6 131

2.73% 3.69%

Other provider 0 1

0% 0.03%

Planned 7 40

3.18% 1.13%

Waiting list 0 90

0% 2.53%

Table 3: Unadjusted comparison of A&E attendances, inpatient admissions and length of stay for H@H patients compared to patients of the same age and diagnosis before and after implementation of H@H – Whittington Hospital (not adjusted for age). Note: the column “total before month of referral” for |H@H patients contains the high cost service use that may trigger referral to H@H. This service use is not in the Year 1 before or Year 2 before. These data are descriptive statistics only to provide information on frequency of attendance and cannot be used for comparison as no adjustments have taken place, in particular for age: the large number of 0-2 year olds in the A&E attendances H@H group means that no A&E attendance can occur for these patients in years 1&2 before.

Hospital@Home Comparator

Total Total Year 3 (after Total before Total after before Year 1 Year 2 Year 1 Year 2 January 2015 – month of month of month of Before Before Before Before implementation of referral referral referral H@H)

A&E attendances

% with 1 or more 7% 9% 38% 18% 32% 26% 61% 30% attendances

Average number of attendances (patients 1.9 1.5 1.9 1.5 1.2 1.2 1.3 1.2 with 1 or more only)

Average (all patients) 0.14 0.12 0.73 0.27 0.39 0.31 0.7 0.36

Inpatient Admissions

% with 1 or more 5% 6% 15% 7% 8% 9% 17% 9% attendances

Average number of attendances (patients 1.9 2.6 2.5 1.9 1.15 1.2 1.2 1.2 with 1 or more only)

Average (all patients) 0.1 0.16 0.37 0.12 0.1 0.11 0.20 0.11

Inpatient LOS

Average LOS 7 5.1 5.3 4.3 2.4 2.6 2.6 2.8 (admitted patients)

Figure 4: Total cost before and after of H@H compared to comparator with 95% CIs

Table 4: Difference in Difference patient level regression analysis adjusting for age (95% CI reported in brackets)

Hospital@Home Comparator Difference in Before After Difference Before After Difference Difference

A&E 0.89 ( 0.33 0.8 0.41 attendances 0.77- (0.25- -0.56 (0.77- (0.39- -0.39 -0.17 1.05) 0.41) 0.81) 0.42)

Cost of A&E £106 £36 £90 (89- £46 -£70 -£44 -£26 (93-119) (32-41) 92) (45-47)

Admissions 0.97 0.14 0.77 0.33 (0.80- (0.09- -0.83 (0.72 – (0.30- -0.43 -0.4 1.14) 0.18) 0.82) 0.37)

LOS 0.30 0.62 2.5 (2.1- 1.42 (1.3 (0.23- -2.2 (0.57- -0.8 -1.4 2.8) – 1.5) 0.38) 0.66)

Total £1058 £164 £612 £275 Admissions (936- (145 – -£891 (584- (262- -£338 -£553 1180) 182) 641) 287)

Total Cost £1252 £219 £200 £95 (A&E plus (1107- (194- -£1033 (196- -£105 -£928 (92-97) admissions) 1397) 245) 204)

Table 5: Difference in Difference patient level regression analysis of total cost reported by age

Hospital@Home Comparator Difference in Age Before After Difference Before After Difference Difference

0-2 £904 £187 -£717 £233 £120 -£112 -£605

3-5 £2,028 £169 -£1,860 £167 £70 -£97 -£1,763

6-10 £2,128 £442 -£1,686 £169 £71 -£99 -£1,587

11-15 £1,211 £41 -£1,170 £166 £73 -£93 -£1,077

16 and over £2,095 £737 -£1,358 £161 £102 -£59 -£1,299

Figure 5: Cost of H@H versus comparator before and after by age group

Cost by age group of H@H versus comparators

H@H - Before H@H - After Comparator - Before Comparator - After

£2,128 £2,028 £2,095

£1,211

£904 £737

£442 £233 £187 £120 £169£167 £169 £166 £161 £70 £71 £41 £73 £102

0-2 3-5 6-10 11-15 16 and over Age ranges

Discussion

Average patient LOS, number of admissions, number of A&E attendances and costs significantly reduced in patients referred to H@H compared to patients with a similar diagnosis and age over the same time period, with the most significant reduction being in inpatient admissions. Adjusting for age, gender and patients referred to the Whittington H@H from UCLH patients referred to H@H result in a total average saving of £928 per patient. The greatest cost saving was for patients aged 3 to 5, with a total adjusted cost saving per patient of £1,763. Hospital at home cost £1,102 per patient on average, which is not significantly different to the total average saving from inpatient admissions and A&E attendances suggesting the service is cost neutral.

Strengths and limitations

The strength of this analysis is that it compares as similar as possible patients before versus after the implementation of H@H, providing an estimate of the potential cost savings of H@H compared to hospital only treatment.

As this study is observational there was the potential for there to be systematic differences between the two groups that may have influenced the results. Indeed there are significant differences in the two groups by age for the patients attending A&E only. This has been accounted for by including age as a variable in the analysis and reporting the results by age group. As expected the H@H patients are significantly more expensive than other patients confirming that they are a more complex, high need group. The analysis though shows significant cost-savings compared to other patients of a similar age and diagnosis for inpatient admissions and A&E attendances.

The calculation of the cost of H@H service is limited by the availability of high quality data on patient resource use. Ideally a bottom up costing, collecting data on patient contacts with different clinical staff as part of H@H would have been conducted. Instead only the cost of H@H for the past year is available. This has been converted to 2013/2014 national costs to make it as comparable with the inpatient and A&E costs as possible. Calculating cost per patient contact day though is sensitive to the assumptions made and is not an ideal way to cost a service. The potential average cost per patient for the service varies from £786 per patient to £1,418 pounds per service.

One of the limitations of the analysis is that, based on the data available, it is hard to know why some patients were referred to H@H where as others were not. It is possible that the H@H patients systematically differed from the comparator group in ways that were not captured in the data (in addition to age and cost). Evaluations such as these are sometimes better suited to randomised control design rather than observational trials so as to control differences in unobservable factors between the two groups.

Views of the service team

Eight members of the service team were interviewed. The Interviews ranged in length from 30-70 minutes. One member of the team was not interviewed due to ill health and another did not have their interview recorded although notes were taken. Selected quotes are found in Table 1.

The service providers feel well supported, have very high levels of ownership and regular opportunities to make suggestions for improvements to the service.

Setting up the service, it was really nice that we were so involved. I know it is a very nurse- led service, and I think in regards to, like, the policies and, like, the SOPs and things, I know that was managed without us, a lot of it, but we were invited to many meetings and we’ve had the opportunity to voice our, you know, thoughts and concerns, and yes, you do feel quite, like, proud that, you know, yes, you’ve helped to make it what it is and... yes, it is... I do think it’s an amazing service. (Hospital at home nurse 6)

Strengthening of links with hospital based teams were reported as a result of the hospital at home service.

And I think we've got a better relationship with the consultants because we're calling them every day… So we've got a close relationship. I think that's why we're getting more patients now. (Hospital at home nurse 4)

Ongoing skills training, knowledge sharing and access to learning opportunities are available.

And we did some other things as well like we paired the nurse with consultants for some shared learning… they could see that we have good skills…And again reassuring for them, I think that was the start. That was the start of building the relationships and I think being really visible, being up there every day in the ward round, participating in conversations about patients. (Hospital at home nurse 3)

The service providers see a clear distinction for the hospital at home service as an enhanced service which provides care for acutely unwell children and goes beyond the scope of community nursing service.

I see it as an extra arm of the community children’s nurse service, that offers an extended service in hours, in scope of practice. … which is much more extended than the, sort of, general standard community patients. The children that are also looked after by the hospital at home team are those who are a little bit more acutely unwell, so require a higher level of nursing care, or more nursing care spread through that day. So, two, three visits a day, extra phone contact. (Hospital at home nurse 5)

Safety measures and hours of operation were mentioned.

We have, like, a safety device that we’ll do on the later shifts, that if we were to get into any trouble, we can phone up. (Hospital at home nurse 6)

Communication during the referral process is not always consistent. A phone call should always be made to the service team to discuss eligibility and ability to accept the referral.

We need as much information as we can. We don’t have diagnostic tools at hand. We need that kind of background information so that we can go and make a thorough and safe assessment. (Hospital at home nurse 3)

There were universal feelings that the families were very appreciative of the service. The reasons given were social in meaning, to being able to return to routines, school and normality for families. To have the comforts of home, such as access to own meals. In the future it is important to routinely embed the capturing of patient and family outcomes and experiences.

Yes, we do give family information. Because also, the family, you know, they are quite happy being seen in their own home which is more comfortable for them and they can just go about and just go on doing their normal daily routine. They do enjoy that. And if there are areas that we feel need, that is beyond our expertise, that they need further information on or be seen by a different professional we do make referrals, you know, within the team and outside the team. (Hospital at home nurse 7)

There was additional benefit of being able to assess the young person in their home environment, for example additional cues and areas of potential concern were picked up on. There was potential for future reduction in problems such as health and safety and nutritional issues.

When you're in a house, you see the family dynamic. You see how they live and you can like there was a child recently like she was having her medication with two slices of cake in the morning, and you'll be like, oh, you know, I don't think you should. And I think… And you build a relationship… whereas if they were in A&E for two hours they probably wouldn't tell you some of the stuff that they see in the house. (Hospital at home nurse 4)

In addition to providing health care the service provides social and emotional support to families. The team are able can provide education and advice to families to improve compliance, quality of life and care which have the potential to prevent future health problems.

They did improve when we were there. So it was, obviously, a compliance thing, but actually as you’re in every day we were noticing, you know, there was no heating in the house. There was no electricity. They were all thin. There was no food… So it’s that kind of thing where you build a relationship and you will see, you know, so we do things like we refer to Shine which is, you know, preventing hospital admission through fuel poverty, you know, you might want to like to talk to them about the benefits, refer to Centre 404, you can help them with benefits, you know, it’s all of those kind of, it’s a holistic approach. (Hospital at home nurse 3)

Capacity has not been an issue and it is expected that the scope of the service will widen, particularly for diagnostic conditions and taking referrals from elsewhere, such as primary care.

It's nice to get referrals from different places. We have referrals from the neonatal units… Yes, it's still on the pipeline, because, you know, e.g., we're still trying to establish relationships with UCLH. (Hospital at home nurse 7)

Views of the referrer team

Sixteen people responsible for referring to the hospital at home service were interviewed. These included paediatric consultants, a senior house officer, ward matrons, A&E paediatric nursing and consultant staff. Interviews length of time ranged from ten minutes to two hours.

Other key people interviewed include the pharmacist and IT developer who have helped develop and support the service. Selected quotes are found in Appendix 2 Selected quotes from interviews with the hospital at home referrer team Table 2.

Health care professionals who refer into the service and participated in the evaluation were found to have mostly positive attitudes towards the service. There was nearly full agreement that care closer to home is potentially beneficial.

No, I think it’s a really good system, and it would be amazing if we could offer it to more boroughs especially because again all the central kind of London hospitals cover quite a few boroughs. So it would be good to know we could offer it to more people, but no I think the process is very good and it seems to be working really well. (Referrer 2)

It’s brilliant. …We definitely want to keep it. (Referrer 16)

And everyone’s very happy that there are extended hours for giving antibiotics to children, getting them out of hospital. (Referrer 4)

Any concerns expressed relate to the model of the service in terms of leadership (nurse led versus consultant led) and lack of clarity over what the service offers over and above existing services, the staggered launch and lack of inequity for all patients, for example those who are not registered with a GP in Islington are not eligible for referral.

As challenging as it’s been, it’s been incredibly exciting. So they ended up co-designing the scope, co-designing the pathways, with the community nurses. It’s all been about relationships. (Referrer 5)

It should be nurse led. This is about community nursing with support from doctors. We're not going into the homes. Hospital at home was never set up for doctors to be going into patients' homes. (Referrer 7)

So I think it has made a difference for those patients. I think it has made a difference for, you know, but otherwise I mean there are some ... I don't know in my heart of hearts how much better it is than the community service that was already in place, because most of our, it’s only really the three times a day antibiotics, I think most of the other children would get, we would get by with the community nurses. Because they are very good, the community nurses. (Referrer 3)

Yes, it could help that, avoidance of early discharge to Hospital at Home. So, you know, we haven’t got that service in Haringey, as I’m sure you know, and there is a, sort of... it does create, sort of, a postcode lottery kind of situation, in that some children are kept in an extra day or brought into hospital because we can’t send a nurse to their home because they’re

Haringey. I mean, that would be another really good development if it could extend into, you know, Haringey because half of our patients come from Haringey. (Referrer 8)

Most expressed a desire for the service to be a success but that this would be dependent upon cost benefits. Almost all had been engaged as stakeholders in the development of the service protocol, design and governance procedures. This meant that the eligibility and referrals process was on the whole well known and understood.

At the very beginning... I did attend some of them [the workshops]. (Referrer 12)

If a safe protocol can be put in place for managing babies with jaundice to everyone’s, sort of, satisfaction from a clinical governance and safety perspective, I think that will be a great move forward as well. I think the potential for managing acutely unwell children at home as a general take-all service, is less clear, because the numbers with individual conditions might be small and I think targeting it around some very specific scenarios, which was always the original vision of the service, is the way to go. (Referrer 4)

Many cited individuals responsible for the service provision and the energies and drive it had taken for the service to become established and a routine part of the MDT discussions. There was increased awareness of others roles, competencies and better working relationships were reported. Bonds have been strengthened between community and hospital based teams. Opportunities for teaching, learning and skills training had been encouraged and made accessible.

I was impressed by, once I started, how long it... how long it didn’t take to make it happen, so it was... it was done in a refreshingly speedy time, and it became pretty obvious to me that it would work. (Referrer 10)

And when they come up to hand over in the afternoon, it’s nice to have them there, and they’re sort of looking around for patients, which has been quite a joy this summer, so they’ve been doing that. Obviously it’s great from my perspective, because they’re looking for people that they might be able to take off my hands. (Referrer 9)

What everybody is very pleased about here at UCLH is how we’ve got to know and build a better relationship with the community nursing team and hospital at home happens to have been the mechanism for that, which is fantastic, given how previous efforts to relate to the, to get to know these nurses better as the children’s community nursing team haven’t really ever quite happened. And I think those personal links have started to develop and are continuing to develop. (Referrer 4)

For the older young people eligible for the service (16-18 years of age) it was not felt that hospital at home is wholly appropriate. This is related to the reasons for admission amongst this age group.

16- to 18-year-olds attend A&E for, you know, acute illness, injuries, mental health, you know, deliberate self-harm, alcohol, drugs.… I don’t think you can make much impact on that cohort age unless, like you say, they’ve got chronic things like diabetes or asthma that they’re not really keeping on top of. (Referrer 14)

There is potential for the scope of the service to expand, particularly for broadening the diagnostic conditions, this could prove timely with a winter season approaching. These would likely have a noticeable impact on earlier hospital discharges.

I think that the patients who were appropriate are still the ones who are appropriate. We have not changed what we do. I think we still don't send jaundiced babies out and we still, as

far as I know, don't have the opportunity to send babies in oxygen who are weaning, we have not had a proper bronchiolitis season with it properly up and running I don't think. (Referrer 3)

Expansion should continue to be staggered so as to ensure that pharmacy provision can remain optimal.

The data systems have led to frustration for many and it has been problematic with the different sites using different systems. Efforts are continually being made to improve these issues and the IT leads are continually reviewing the process. This has led to issues in terms of providing quantifiable evidence. Robust comparable data has been hard to access for all and is a frequently revisited and well known problem.

Some of the data collection is problematic.… It’s not either clear to me whether the actual software used or the people involved in the collection or providing data becomes... poses various levels of difficulties. And from the little I looked at them it’s really either they are inaccurate, incorrect or insufficient. And I think it will be extremely difficult to perform evaluation if data collection itself is not either as robust or as reliable as it should be. (Referrer 1)

I think its big challenges. Is it really cost-effective, really? So, yes, it’s a great service, but what is it really providing over and above community nursing? And I don’t know the answer to these questions. What is the money attached to its service? Like, how much more expensive is it than community nursing? I don’t know. I don’t know, I don’t think it’s better than community nursing, in that, in, literally, in the communication actually. And the knowledge that you sort of keep, those patients sort of slightly closer to home, and they’re just sort of disappearing to the ether of the community, from our perspective anyway. (Referrer 9)

There is no formal recording of families who may be eligible and offered the service but who prefer to have hospital based care. There was no sense of this for those directly asked and perhaps there have been no instances for refusal to date. It would be good to have a mechanism for capturing reasons for refusals which is acceptable to the consultants. Furthermore, we were not able to gain a sense of numbers who could not be referred owing to a lack of capacity with the hospital at home service.

There are differences in referrals to the service from the two main hospital sites and suggestions were made as to reasons for this discrepancy.

I think the referral figures reflect the number of patients who clinically, for whom there is a clinical, real, true clinical eligibility for this service. You can always say, well they’d benefit from an extra review by a nurse, but that would apply to virtually every patient ever seen. But, and I think that might be partly why there’s differences in the referral figures. [between the 2 hospital sites] (Referrer 4)

Views of the families

Ethical requirements meant that the evaluation team could not directly contact families for survey or interview. The hospital at home team were tasked with distribution and collection of a survey at each service discharge and asked families and young people (aged 8 years and over) if their contact details could be passed on the evaluation team for potential interview. In this way we received seventeen completed surveys and separately the contact details for seventeen families. The families who had passed on their details were followed up by the evaluation team via e-mail, text and telephone. Four families gave consent to be interviewed for the evaluation. Unfortunately we were unsuccessful in interviewing any young people directly.

Parental survey There were seventeen parental responses to the survey which was distributed on discharge by the hospital at home service. All parents answered all questions and there was an option for an open ended response at the give the opportunity to give the reason for the response (see Box 1).

All of the respondents (100%, n=17) rated the care received overall as very good or good. The majority of parents (94%, n-17) felt that they had confidence in the staff member who they saw, the remainder neither agreeing nor disagreeing with this statement. All parents agreed or strongly agreed that they were involved in as much decision making around care as they wanted to be.

12% of parents felt that the information they were given about their child’s condition helped them to understand how to better manage at home. With all respondents agreeing or strongly agreeing that they were given the contact details for the team and the hours and who to contact and that they would recommend the service to a friend or relative in a similar situation (see Table 3).

The open-ended responses were all positive. Some personally thanked the staff. Reassurance and confidence were mentioned as was the convenience of the service. Good communication was mentioned as an attribution and a few specifically stated that the location of care at home was an important positive factor (see Box 1).

Parental interviews Three parents who had experience of the hospital at home service were interviewed. Interviews were undertaken via telephone as preferred by the interviewee and the length of time of each interview was 10 minutes. Selected quotes are found in Table 4.

Three families were interviewed for the evaluation. These were all mothers of children who had experience of hospital at home.

The information provided by families are based upon relatively small numbers of respondents and should be treated with caution.

One child had complex health needs and had been admitted three or four times in the previous 12 months. On this occasion the admission was for a chest infection.

Yes, we’ve been in there quite a lot, quite a few times. Prior to that, I think last year she was in three, maybe four times. (Parent 1)

The family became aware of the service 12 months prior to interview.

It was while we were in hospital and I was, kind of, desperate to go home. Then they told me about it and I think that would have been probably about a year ago or longer. (Parent 1)

The service has led to high satisfaction with the experience of care.

I haven’t got a criticism of the service at all, so nothing. I just thought they were amazing. (Parent 2)

Thinking about it, you know, it seems to work really well. (Parent 1)

I was really impressed with the service we got. (Parent 3)

Being able to go home was beneficial to the families especially those who have other dependents at home.

One is three and three months, and my son’s three months now. (Parent 3)

She absolutely prefers being at home. I mean, she’s non-verbal but I just know. I mean, she sleeps a lot better at home. It’s obviously a lot quieter, it’s an environment she’s a lot more comfortable with and she tends to get well a lot quicker. I mean, it just depends on the severity of her illnesses. Once you’re in you’ll be there for the next two weeks because she needs to be but neither of us gets much sleep there, which you probably know anyway. So, yes, for sure. (Parent 1)

The hospital at home service was able to remain flexible enough to be able to fit around the school day.

Basically, when he was discharged, he had the intravenous antibiotics for about three weeks and he had ... but he also had to go back to school. And they went to school and gave it to him. (Parent 2)

There were clear benefits in terms of care, family and being home. The costs to the family in terms of travelling and lost hours to work where not cited.

They were really, really good and they were really good because I was really struggling mentally after a bit. I just thought he wasn’t ever going to get better. They were really supportive with that as well. (Parent 2)

The nurses that came, really friendly, very knowledgeable, and, I mean, ended up... I mean, I had physical problems with my little one feeding, he was tongue-tied, and I mean, they even tried to help me with that. (Parent 3)

Shadowing The service has an unpredictable caseload and when members of the evaluation team shadowed the service providers there were six babies currently under the service and the nurses were busy with home visits. Three of the families were contacted by telephone for review and to offer advice as needed.

The following was a quieter day and a new referral call was taken followed by a home visit. The mother was concerned because her toddler was admitted at the weekend for breathing difficulties

and she has two older children at primary school. With no family support nearby staying on the ward was problematic for the family. The hospital at home nurse reviewed vital signs, checked medications and discussed a treatment plan with the mother and gave reassurances. It was explained that a hospital at home nurse was available if needed, and plans were made to follow up the next day with a telephone call.

The next visit was a discharge of an older boy with complex needs at the end of an extended period of illness. Again the family appreciated being at home and for their children to be able to have the comforts and routines of home. The hospital at home nurse took vital signs and measured respiration. The care plan was discussed with the parents and reassurances were given. The family was appreciative and happy to be discharged.

Case studies Case studies illustrate the quality, safety and effectiveness of the hospital at home service. In addition they also demonstrate the uniqueness and the value added by this innovative service in comparison to standard care. A framework for case studies was developed in collaboration with the hospital at home nurses in order that a list of example cases can be recorded on an on-going basis.

Methodology

The case studies were selected with the aim of providing real examples of how the hospital at home service has been involved in the care of children with a broad range of different medical conditions and care requirements. This selection process involved providing the hospital at home team with a set of parameters for the range of cases we were hoping to study and the team then identified patients from their records. These parameters included factors such as age, condition, severity of condition, care required and duration of relationship with hospital at home. The relevant information was then extracted by an independent evaluator by analysis of the various medical records using a developed framework. The hospital at home team was then invited to comment to ensure accuracy of information.

In addition we have two illustrative case studies supplied by the hospital at home team in collaboration with families who had accessed the service.

Definitions

Community Children’s Nursing (CCN): A nurse led service that deals with children with acute and on- going conditions that require a nursing service. For example children who require regular bloods and central line dressings, once daily antibiotics and wound dressing.

Hospital at home: A consultant led nursing service in which children remain under the care of a consultant paediatrician. It is often, but not always, for children with more acute needs and aims to halt admission or to reduce length of admission and prevent re-admission.

Case study from family 1 (provided by hospital at home team)

“When our little boy was born it was the happiest day of our lives. I got home, I was doing my best with breast feeding, but my milk had not come through, my little man was getting frustrated. We were seen by our community midwife in our home. They were concerned that he had lost a lot of weight and looked jaundiced. This meant we had to go back to hospital.

After just being discharged from the hospital and being up all night with my little man, this was the last thing I wanted. However, we knew it was important for him, so we set off to the Emergency Department.

We were seen quickly by a nurse, who then weighed and examined our little man; we waited eagerly for the results and to be seen by the doctors.

The doctor came and checked our little man over, they were concerned about how much feeds he was taking.

They then gave us two options. One was to stay overnight on the ward. The second option was to be in my own home with my little man and have support from the hospital at home nurses.

When I had the option to go home I was delighted. After just being discharged from hospital, I felt that I and my son would be more comfortable and relaxed at home. The nurse came to my home full of smiles, she checked my baby. The great news was he was well enough to stay at home and thankfully didn't need to stay in hospital. I can now continue to look after my little man at home”.

Case study from family 2 (provided by hospital at home team)

“I went to my GP and he was worried that my baby had developed a bad cough and so sent us to A&E.

When the hospital doctor looked at my son he was concerned that he was not feeding very well and was coughing a lot. He advised that we could stay overnight on the ward or stay in our own home and have support from the hospital at home nurses. When I had the option to go home I was delighted.

I felt that we would be more comfortable and relaxed at home and I could look after my other child as well.

It is always scary when your child is not well but the nurses were fantastic. They came to see us every day and I could phone them if I was worried.

I was not aware at first how comprehensive the service would be. The nurses kept in touch with the hospital consultant so he knew what was happening and they could decide on the treatment that my son needed; this was very reassuring.

I was very confident in the care that my son received. The nurses were very knowledgeable and were able to tell me what to expect. They answered all my questions without making me feel stupid and I felt like I was fully involved in making decisions about what was happening.

I am sure that if the nurses had not kept coming to my home I would have gone back to hospital. The nurses were a link between the hospital and home and the whole experience was fantastic”.

Views from primary care

Six doctors responded to the survey of primary care practitioners in the borough (see Appendix 11). Five were Principal GPs and one a GP Registrar. Four of the six respondents were aware of the hospital at home service for young people in Islington, two were not. Of the four who were aware two felt the service was Excellent and one that it is Good, one respondent Could not say. Reasons given by those who were aware of the service were as follows: I have been involved in the working group and received updates regarding its development and work and have been impressed by the work done. (Excellent) Not used, no comment. (Could not say) I have heard good things about it. (Excellent) But as yet have not tried it myself. (Good)

Responses given by those who were not yet aware of the service about what they would like to know about the service and how they would like to receive this information focussed upon the referral criteria and eligibility, description and scope of the service, the methods for referral, for example, via EMIS25.

Half of respondents (n=3) felt that the hospital at home service had or would improve their satisfaction with providing services to young people in Islington and half could not say (n=3). Four respondents thought that the hospital at home service had or would improve patient outcomes, with two being unable to comment.

The majority of the respondents (n=5) felt that they could not say if they thought the hospital at home service had or would improve the cost-effectiveness of care. Improvements to service delivery by the hospital at home service were thought probable by four respondents. And five felt that the hospital at home service should be made directly accessible to primary care practitioners.

When asked about the perceived challenges to a hospital at home service for young people the respondents reported the key areas of: establishing sufficient trust and collaboration for GP and paediatricians and nurses to work together whilst providing a safe service; time spent travelling; governance; staffing and training; good communication and safety netting (sic.) When asked about the perceived benefits of a hospital at home service for young people the respondents reported: facilitating care of young people in the community in order to minimise disruption to family life and to educate; fewer days in hospital so can have IV antibiotics or chemo at home. -These are not decisions GPs would make hence unsure re GP referral; independence and early extraction from the institutional environment of a hospital ward; need to see outcomes, but less hospital care; home environment; avoiding hospital; more relaxed; less anxious.

Service outcomes

There were 326 patients in the hospital at home group, 73 of which were referred during the implementation phase, and there were 11,707 patients in the comparator group.

Clinical effectiveness Monthly interdisciplinary meetings are held at UCLH, Whittington Health and the Northern Health Centre which allow discussion of issues regarding quality of the service to be reviewed and actioned in a timely way. This is also a forum for highlighting areas where developments can be made and for ideas and the sharing of knowledge.

Equality Impact Analysis Ethnicity The ethnic background of the caseload was a mixture of both White British and ethnic populations. Data provided directly from the hospital at home data team until the end of September 2015 shows the following breakdown for ethnicity of the young people as White (any group) 111, mixed/other 45, Black (any group) 47, Asian 17 and unknown for 31 patients.

Re-admissions To mid-September 2015, ten cases had been re-admitted from hospital at home (see

below). These were discussed with the service team, lead consultant and medical director and were agreed to be appropriate referrals. The low numbers and appropriateness of re-admissions demonstrate a good safety net and support the robustness of the pathways that have facilitated timely detection and correct escalation for re-admissions.

Re-admissions from hospital at home from all referrals to mid-September 2015

Number of Reason for re-admission re- admissions 2 Post-surgical complication 1 Skin reaction to henna 1 Auto-immune deficiency – wheeze; re-admitted to burst therapy (unpredictable, required for therapy) 1 Wheeze (fail to discharge earlier) 1 Bronchiolitis (re-admitted due to low saturation) 1 Laryngomalacia 1 ENT –referral narrowing

1 Viral illness 1 Suspected UTI

Discussion

The process of setting up the service was different to other integrated care models for both the evaluation and the hospital at home team, and there was much change occurring during this period of development. The hospital at home service has evolved and flourished since its early days and the efforts and hard work of the hospital at home team to make it a success should be acknowledged.

The time required in setting up the service and establishing protocols and governance procedures should not be under-estimated. Embedding the service within the existing community nursing team has provided hospital at home with a good working knowledge of local procedures and services. It has also allowed a good mix skills and range of expertise amongst the team.

There was a delay in the development of neonatal pathways for feeding difficulties and jaundice which have not yet been agreed with the hospital sites. Hospital at home services were intended to avoid unplanned admissions and to reduce length of stay on admission. The case study A demonstrates one such case where wound dressings and IV antibiotics were given in the home, preventing a two week stay in hospital. This was of benefit to the patient, their family and the NHS.

The low response from families and young people was disappointing and those interviewed may not be representative of the total parent group. The evaluation team tried a variety of methods to contact the families for whom we had contact details, including telephone, text and e-mail.

Recommendations for future evaluation should include a variety of strategies to improve response rates such as asking the hospital at home team to post surveys when not completed at discharge or when discharge is via telephone. Similarly interviews can be arranged at discharge.

The low response from a survey of primary care practitioners is a reflection that the service is not yet available to primary care for referrals and as such is not unexpected. Presentations have been given by the hospital at home team to the Primary Care Commissioning Group which has generated awareness of the service in the borough. There are plans to repeat these presentations. The survey responses given are not representative of the wider group of GPs but are indicative of the benefits perceived of the service and give an initial indication of the steps which should be considered when establishing the service within primary care.

Conclusion and recommendations The hospital at home service has been cautiously but systematically developed to provide care at home for acutely unwell children and young people. Overall it is welcome and acceptable to providers, referrers, patients and their families.

Care closer to home is on the NHS agenda and the implementation of the hospital al home service meets recommendations from the evidence.

The requirement for the hospital at home service for young people is seen as beneficial for families and young people. The instigation of the service has made considerable progress in the past year. Steps were made before referrals were accepted by the hospital at home service to ensure that consultation with key stakeholders and a wide range of organisations occurred. This set-up phase has been helped by support from NHS staff from a wide range of disciplines working together.

Multidisciplinary groups representative of IT, pharmacy, nursing, clinicians from primary, community and secondary care and service managers have worked together to ensure a trusted service with good governance.

The hospital at home service can offer a high quality and acceptable service. It is preferable to extended inpatient stays for young people and their families. There does not appear to be an increased risk or poorer clinical outcomes for young people.

Working together to develop and support the hospital at home service has led to improved relationships and communication between NHS staff which may influence more effective service delivery. Health care professionals and families showed a high level of support and satisfaction with the service. They report that the development and operation of the service has led to improved collaboration across the health care system.

It is known that systems change within the NHS requires time to develop and be adopted. This hospital at home service shows a careful multidisciplinary approach can lead to integration in a short space of time.

Clinical leadership have made recommendations for improvements, for example streamlining discharge documentation. This welcome consultation and development between hospital staff has engendered a feeling of ownership. This is particularly strong for the nursing team delivering the service and has led them to make adaptations and improvements to the service.

The hospital at home nursing team work closely with the hospital teams, and with the service’s consultant, to ensure smooth running of the nursing service. They ensure that consistently high standards of patient care are maintained within the service. They review all referrals, liaise with hospital staff to assess patient requirements, undertake risk assessments prior to home visits, provide care at home according to an agreed care plan, and ensure all supplies, drugs and equipment are available for use.

Hospital at home achieved its intention of reducing A&E attendances and inpatient admissions for children with complex health needs compared to other children of the same age and diagnosis, although with significantly less complex health problems. The total cost per patient of the hospital at home service was not significantly different to the total cost savings achieved from reduced A&E attendances and inpatient stays, hence the service is at least cost neutral. Given this was an observational evaluation the true potential cost of A&E attendances and inpatient care had these children not been referred to hospital at home is unknown. As a result it is possible that hospital at home is cost saving. It is difficult to say this with confidence though in the absence of a randomised control trial of hospital at home compared to no hospital at home.

The evaluation has been able to establish a toolkit and model for evaluation which can be embedded as the service develops. Efforts should be made to ensure routine capture of the added value of the service as well as the impact on patient experience, costs to families and outcomes.

An evaluation pack in the format of a series of topic guides has been produced for interviews with key stakeholders, service providers, and families about their views and experiences the service. The focus of the topic guides was on gathering views on the service – ‘what works well’ and ‘what can be improved’.

The tools developed can be found in the appendices. These have been presented with a view to conceptualise a toolkit for current and on-going future evaluation for the service.

The IT systems currently in use do not allow ease of access or sharing of data and this needs to be addressed so that health care usage on admissions, readmissions, and length of stay can be tracked and captured.

If the evaluation is to be on-going then this should include exploring the views from primary care about the potential for using this service, in addition to the standard feedback questionnaire. NHS Outcomes framework advocates strengthening work on the measurement of children and young people’s experience of care. iv v A stand-alone qualitative study is recommended to explore children’s views and experiences of the hospital at home service.

The development of best practice guidance and service quality standards should be encouraged as the service expands.

Formal recording of service developments and modifications to the service plan over time should occur. This can help guide recommendations for quality improvement.

Where appropriate added value resources can be developed such as referrals to support agencies, health promotion and health education materials provided to parents. This added value is represented by the skills and experience of the current nursing team and should be acknowledged and formalised. The added benefit of such actions on future health and social welfare should be considered.

Currently service providers are well supported in terms of skills development and clinical practice and this should be maintained. Being able to participate in joint education and training is valued and helps strengthen multi-disciplinary links. Budgets for service promotional materials should be considered. The effect on carer burden and costs for families should be considered.

Expansion to ensure long term responsiveness to local need without losing momentum or compromising the quality of the current service needs to be considered. In its first year the hospital at home service has achieved the following strategic objectives:  Provided continuity of care at no additional cost.  Further supported Community Children’s Nurses integrated care.  Met the requirements of the National Outcomes Framework. It has not demonstratively:  Increased equity of service for the 16-18 year old cohort. At present the service does not serve the teenage population and further consideration needs to be given to this. Perhaps it should link with CAMHS provision, given that mental health is a significant factor in the use of acute services by adolescents.

The evaluation has found a service which is welcomed by both service providers and referrers. The benefits of care closer to home, care beyond immediate treatment and improved MD team working are known and reflected here. However, issues remain with the scope of the service in terms of diagnostic conditions, age groups covered and crucially the recording and reporting of service use data.

The evaluation has covered the period of the first 16 months of the operation of the hospital at home service and an economic evaluation of 12 months of Whittington Health data only. Owing to the staggered launch of the service and the time taken to establish governance procedures, we recommend the service should be allowed time to resolve these issues. We recommend re- evaluation of the service use and full cost effectiveness (including UCLH) after another full year of implementation.

LIST OF APPENDICES and EVALUATION TOOLS

Appendix 1 Selected quotes from interviews with the hospital at home service team

Table 1 Theme What they said

Age We've had a few older kids. We've had more younger ones, yes, than older ones. (Hospital at home nurse 7)

Attitude Are the families involved [inaudible 00:09:57] at all? positive

Benefits: family IE At the beginning we did get a lot of opinions, and views from them. What we get from families now is a lot of positive feedback. I mean it’s across the board, positive feedback. I'm not sure we’re getting anything, sort of, constructive or… can you do this better please? I’ve not had that. We just get, sort of, on feeling, gratitude. (Hospital at home nurse 5)

Attitude This is a really well, sort of highly appreciated service, and it’s working so well for positive the families. (Hospital at home nurse 5)

Attitude: I've heard positive feedback. (Hospital at home nurse 4) positive

Attitude: Just seeing the comments from parents and hearing how much it's helping them positive on a daily basis, and how reassured they are with us. And I think that keeps you going, really, and I think it's good. (Hospital at home nurse 4) Benefits: family

Awareness ...they had this big consultation, and then the doctors felt, oh, you know, how can these nurses look after these children? So there’s a lot of anxiety, and a lot of negativity around our capability of being able to look after children in the community. (Hospital at home nurse 2)

Awareness I do go to the ward round in UCH on a Wednesday, just to, kind of, facilitate relationships, and to encourage them to refer out. (Hospital at home nurse 2)

Awareness And we did some other things as well like we paired the nurse with consultants for some shared learning… they could see that we have good skills…And again Benefits: team reassuring for them, I think that was the start. That was the start of building the relationships and I think being really visible, being up there every day in the ward round, participating in conversations about patients. (Hospital at home nurse 3)

Theme What they said

Awareness I mean we have to be visible because we do need to be discussing patients, but the consultants stay. They’re steady. They’re in substantive posts. They don’t move. So they know us now. (Hospital at home nurse 3)

Awareness I think we're building a relationship more. I think, initially, it was quite hard to build a relationship with Whittington and UCLH because obviously there were a lot Communication of fears of like accountability and stuff, which we're seeing in our meetings. But I Benefits: team think now that we've spent more time with them, going to hand over, going to ward rounds, going to MDT meetings, they've got more trust in us. And now that they've seen a couple of patients with us and seen how it's helped having IVs at home, or respiratory assessments and stuff, they've built that trust in us. (Hospital at home nurse 4)

Awareness So in the mornings if we don't have an eight o'clock visit, we try and go to ward round. So we sit there with the doctors and go through the ward list. So who can Benefits: team we take, if they're Islington or [unclear 00:10:53] GP. Then they go through what Communication they've come in with, what plan there is, and then we work together. So if we're not on ward round, we'd discuss the ward round and they call us on the hospital at home phone, which is from eight until ten they can call us.

They can even just call to discuss the patients if we've got capacity, the right skill mix. And if we have the time to actually see the patient we will accept. And then they hand a leaflet to the parents, and so they've got a contact number and we get the supplies either from Whittington, UCLH or from ourselves. Then we book the first visits would always be in twos. (Hospital at home nurse 4)

Awareness It's developed. From the beginning to now. And it's quite nice seeing that because, initially, it was quite stressful. And then now it's much more at ease. And, yes, the Benefits: team relationship with the hospitals have helped as well. (Hospital at home nurse 4)

Awareness I did attend some of the meetings about the, like, setup and start-up of it, which was helpful, that had some of the consultants there as well. (Hospital at home nurse 6)

Benefits: care Yes, so with speech and language referral and then that did happen. We’ve had a few children – not many, under a handful – where it’s been very clear that they’d actually needed an ear-nose-and-throat referral and so we’ve been able to get that to happen, but they’ve had to then go back, be reviewed, of course have a medical review. (Hospital at home nurse 1)

Benefits: care I mean, sometimes it might be that the child wasn’t speaking at two years of age and you’d expect them to, you know, the normal sense, and so you could suggest there are these A, B, and C that you could call, and would you like to, you know, we can refer it there. (Hospital at home nurse 1)

Theme What they said

Benefits: care If it was that, then we can refer to speech and language, because they’ve already got little groups available.

… And we’ve got speech and language next door to us, so we can then go…(Hospital at home nurse 1)

Benefits: care Or it might be that, yes, you suggest that, you know, there is a baby clinic. We do suggest that you go there if you’re thinking about weaning, you know, etc., you know, you can always get support in that area. Or if there’s been some weight loss, which is expected with the illness, do you go and get a weight next week, and then the health visitor can advise you thereafter, so there’s some sense of. (Hospital at home nurse 1)

Benefits: care We’ve got a child currently on hospital at home that is an ex-prem, so we have the speech and language therapist, the neonatal nurse is still involved, we’re involved, Communication and the community team is involved, so we liaise with the dietician, and sometimes we do joint visits etc., so that we’re managing the whole acute period, you know, as well as the chronic period. (Hospital at home nurse 2)

Benefits: care Because once you go into somebody’s home, and I think as well families are much more open when you’re in a home situation because it’s their environment they Benefits: feel more powerful, so less vulnerable. So they will share more with you and communication actually. (Hospital at home nurse 3)

Benefits: care They did improve when we were there. So it was, obviously, a compliance thing, but actually as you’re in every day we were noticing, you know, there was no heating in the house. There was no electricity. They were all thin. There was no food… So it’s that kind of thing where you build a relationship and you will see, you know, so we do things like we refer to Shine which is, you know, preventing hospital admission through fuel poverty, you know, you might want to like to talk to them about the benefits, refer to Centre 404, you can help them with benefits, you know, it’s all of those kind of, it’s a holistic approach. (Hospital at home nurse 3)

Benefits: care And then thinking about, okay, you know, is the child attending school? What’s happening at school, are they aware of the eczema plan, who’s putting the creams on at school? Plus all the education, you know, are they using the spoon to scoop out the cream. (Hospital at home nurse 3)

Benefits: care I did a patient interview and what that parent was saying was actually it was very anxiety producing to come home, but once they were at home and the nurse had contact and she had our phone number and would phone first thing and I think what she said was, you always did what you said you would do. She said so if you said you would phone at eight in the morning you would phone us at eight in the

Theme What they said

morning and that was very reassuring. We knew that there was always somebody there. So that really reduced her anxiety. (Hospital at home nurse 3)

Benefits: care If there are any social cases, we always check on RIO to see if there are any previous social concerns… We have done a couple of social care referrals from our visits

… One of the recent patients needed speech and language therapy and dietician, which we referred to… with the consultant, because we discuss the concerns. So yes, we work together, really.

...and then we discuss with the consultant, and then they reviewed them and they thought the same. They were referred to ENT at Great Ormond Street, and that's when the speech and language and dietician got involved. (Hospital at home nurse 4)

Benefits: care In the sense of poverty, like you do notice, like, you know, you'll go to some houses that have got, like, seven people in this tiny two bedroom house, or you'll see a grand house, like, it's a variety. And you adapt. But if we have any concerns we do try and get social care involved and stuff. To help them… And if there are families that you can see are kind of struggling, we do try and see if they can get any extra funding like through DLA or something like that. (Hospital at home nurse 4)

Benefits: care When you're in a house, you see the family dynamic. You see how they live and you can like there was a child recently like she was having her medication with two slices of cake in the morning, and you'll be like, oh, you know, I don't think you should. And I think… And you build a relationship… whereas if they were in A&E for two hours they probably wouldn't tell you some of the stuff that they see in the house. (Hospital at home nurse 4)

Benefits: care Other things I've picked up as well, like mother's mental health or, you know, maybe like family issues and stuff, I think. (Hospital at home nurse 4)

Benefits: care we'll discuss with the senior and then we'll find, again, we'll find out if there's any past troubles and we'll speak to social care and let the consultant know and offer help if parents need. (Hospital at home nurse 4)

Benefits: care In the community you're not just a nurse. Like you'll be like everything, really. Like a bit of social, a bit of like dietician, a bit of… You're just kind of a bit of everything and that's where you develop your skills, like in other ways. (Hospital at home nurse 4)

Benefits: care I think that it provides really excellent nursing care to the children in the home, in their own home. And, I really believe that that is where a child is going to recover better. … I just can see the difference. Having visited the kids in the hospital,

Theme What they said

seeing them again in their home, it’s just better, it just is. So that’s great. (Hospital at home nurse 5)

Benefits: care Social work comes up a fair bit. And we work with them as we would do in the general community setting anyway, we’re not, I think, doing anything new. (Hospital at home nurse 5)

Benefits: care We’re seeing the family in situ live, in the home with all the good stuff, and maybe all the not so good stuff as well. (Hospital at home nurse 5)

Benefits: care Yes. I mean, generally you would pick up on things like, [overtalking], I think areas of safety within the home. So, for example, where there should be a stair gate, or a gate to, you know, things like… So areas of safety. You would… things like identifying… dietary issues. So supporting weaning, supporting… and that would be [overtalking].

[Interviewer] Like all the [inaudible 00:31:47] used to do, they used to go and [overtalking].

Yes. [Overtalking]. It’s almost like you’re identifying these little things, of course, and you’re, you can then point them in the direction of their local children’s centre, ask who their health visitor is, have you, would you like help, or have you thought of it, have you been given help with the subject of…(Hospital at home nurse 5)

Benefits: care Then areas of, I mean, social concern will come up quite a bit. Where you might see evidence of neglect, or… worse, I do not know, I'm just sort of saying that as a general thing. You would contact social services, or [inaudible 00:32:42] services pretty quickly. I can't think of anything really specific. (Hospital at home nurse 5)

Benefits: care if we visit a child and we feel that, you know, they need to be referred or, you know, we need to liaise with other agencies that are maybe already involved in their care, then we can quite easily just contact them, yes, by phone. (Hospital at home nurse 6)

Benefits: care It’s very different going into someone’s home than it is on the ward. (Hospital at home nurse 6)

Benefits: care I know we definitely have patients that we’ve had to contact social care about, so that’s been quite good that we were able to catch that, and also when you’re in, you also find... you’re spending time at someone’s home and talk to the family, that other health needs might come up that you’re able to help them with or advise them or refer them on to other agencies. (Hospital at home nurse 6)

Theme What they said

Benefits: care Hospital at home it's more about information giving. It's more just trying to teach the parents more about what's going on, what happening, getting them involved every step of the way. I find that that makes things much easier and then the child just recovers quite quickly because you've given them the right information, you've told them what to do, emphasized it, and you can just go there, give it to them and then that's it.

You can still… We do a lot of telephone follow-up as well, as you have seen in the morning. You come in to do it [unclear 00:14:12] or sometimes just phone later on in the evening and just phone the family and making sure that they've understood you, the information you've been giving. And even if by text message, you can text as well, just to try and get information across again. (Hospital at home nurse 7)

Benefits: earlier We do have a couple of patients that are, like, regular attendees at the hospital, discharge but now they’re quite good at getting them out to us once they’ve been seen in A&E, or at the Whittington they’ve got the children’s ambulatory unit, so we get referrals before... instead of them going up to the ward and being admitted for, like, a night or something. Because we’ve got to know the patients quite well, a lot of them we know from the community nursing anyway, so they can just say straightaway, so-and-so’s come in, we’re sending them home. Can you go and review them or... you know? (Hospital at home nurse 6)

Benefits: family [Interviewer] Did you get feedback from the family?

[Interviewee] Yes, and that’s always been very positive.

…It’s about that they don’t have to go back; they can stay at home…

It’s much more convenient and they’ve got other children, then it’s much more manageable than to do that, because there’s something about empowering the family and the parents, so if it’s a condition that, say, might recur, they then feel more able to deal with or know we need to seek medical advice at this point in time or, you know, something of that nature. (Hospital at home nurse 1)

Benefits: family I think they’re about teenager, early teenager, and they... one boy needed antibiotics for a long time because he had a perforated appendix or something. He really enjoyed the service, and he was able to go back to school and have his IV antibiotics at school, so I think that mother was really very grateful for the service, and... as he was. And I think sometimes, when you’re that age, you feel more anxious if you’re in a hospital environment than in a home environment, you know, even though you’re unwell in your home environment. I think it’s the perception that if you’re in hospital that you’re unwell. I saw a boy at the weekend, or this week, he was nine, and he felt... I thought he felt like he was still poorly and needed to be in hospital. (Hospital at home nurse 2)

Theme What they said

Benefits: family The older ones have been quite keen to go back to school. (Hospital at home nurse 3)

Benefits: family Be with their friends, but also I mean there is an awful lot of pressure on teenagers about their GCSEs I think they feel it, you know. I mean there’s somebody on a case that we’ve just transferred into CCN because he was on hospital at home for quite a while who, oh gosh, he must have been on our caseload for weeks, and we were able to go, we had to go in sometimes two or three times a day to dress an abscess which was just oozing. Oh, it was really very bad, but he was able to go to school every day. We would come in before school and after school and for him because his GCSEs were coming up, that was the priority for him, and the fact that we were able to arrange ourselves around his school it made a big difference for him. I think there will be some who want to stay off school I’m sure. (Hospital at home nurse 3)

Benefits: family Yes, I’d like to when I did my patient interview I was doing this been doing [unclear00:41:44] so I had to do it and luckily it just tied in with this, what I found Benefits: care interesting I asked, this parent had spent time in hospital before with their child because he was, he’d spent some time in the neonatal unit and at birth. And so after we’d had quite a lot of discussion about the service I said to her given that you’ve, you can compare you’ve had the opportunity to have been in both what would you say was the biggest benefit, you know, which did you prefer and what was the biggest benefit? And she said that actually when she was at home she could tell how sick her child was.

She said when I was in hospital everything was just, our whole routine was handed over to the hospital routine so the baby was woken when the consultant did their round and feeds were at set times and she said so you could never tell quite how sick they were because everything was strange. Their routine was shifted so they were grumpy. She said and when you come home you can tell whether they’ve slept well or not because they were now in more of a routine. You can tell that their appetite was this that or the other because you could compare it to what was normal. (Hospital at home nurse 3)

Benefits: family And that mum she said she found that very empowering because she felt much more in control and for her that was the biggest thing like actually just being able to feel that you were in control and that you were central, everything was round. (Hospital at home nurse 3)

Benefits: family And they were quite grateful that we could just come in the house and in their own comfort and I think they're just more relaxed. Coming from working in A&E, like you saw the stress in the parents,… And they are quite grateful and they talk to you normally. I think it's quite nice. (Hospital at home nurse 4)

Theme What they said

Benefits: family I would definitely say the families are really glad and really love it, but they’re very positive towards it, definitely, and you do obviously get some parents that like the Attitude: safety of being on the ward, but, like, we always explain, we... they are still under positive a consultant, we do liaise with consultants, and I think that does put a lot of families at ease to know that, you know, we work closely with the doctors in regards to, like, care.

But the majority of, like, verbal feedback from families, it’s they just love being able to go home and find that they... they find that the children are much better in themselves when they get home so in their own environment, and they can manage them a bit easier than on the ward. Especially if they’ve got other children as well that they have to take care of, it’s a lot easier to be at home, yes. (Hospital at home nurse 6)

Benefits: family we’ve had some, like, patients that... with... they’re well enough that they’re able to go to school, and we can provide treatment in the school if we liaise with the school, so they can still have that; you know, see their friends and have a bit of a normal, you know, life, which I know parents are very thankful for and very grateful when the child... I think it just helps with their recovery as well if they’re not sitting in a hospital bed, you know, for days and days, if they can be at home in their environment and with their friends and family, then yes, I think it does help big time. (Hospital at home nurse 6)

Benefits: family Yes, we do give family information. Because also, the family, you know, they are quite happy being seen in their own home which is more comfortable for them Benefits: care and they can just go about and just go on doing their normal daily routine. They do enjoy that. And if there are areas that we feel need, that is beyond our expertise, that they need further information on or be seen by a different professional we do make referrals, you know, within the team and outside the team.

E.g., we'll call [named nurse] who is an expert on eczema if we see a child, even though we might've gone in there for let's say asthma and the child's eczema is really bad, we speak to the family about the eczema and they can tell us a little bit about what's going on. And then we can suggest or say we'll call somebody else on the team who'd be very happy to see you, what do you think about that? If they give permission and say yes then we can [unclear 00:16:05] seeing them as well.

[Interviewer] So really, you know, it's an added benefit, isn't it?

[Interviewee] Yes, it's an added benefit. So family do, you know, like the service and the fact that we run from 8am to 10pm. They like that because [unclear 00:16:22] on IV antibiotics that is three times a day and they're always either in

Theme What they said

hospital and they're well and they only need the antibiotics three times a day. They more or less find themselves in there waiting for the next one and then the next one that's not been [? 00:16:36]. While at home we can go in three times a day, give it and they can still carry on with their normal… (Hospital at home nurse 7)

Benefits: family Family do like the service… I remember one weekend a few months ago. I was doing [unclear 00:20:58] antibiotics that was meant to go to the ward to get something done in between and the family just hated the period that they went to the ward. Actually they were calling me oh, did you know what they're doing? No- one is talking to me. No-one is doing this. Can you please call and sort it out? Can I please complain so you can give the antibiotics and never be…? And I felt so bad, so I just said to the nursing staff just, if it's a cannula problem just sort out the cannula and I will go home and give the antibiotics, which they ended up making me not getting [unclear 00:21:37] the infusion. The family just, you know, she felt so unsettled on the ward and she had to call me. (Hospital at home nurse 7)

Benefits: skills An environment that you don’t know what, you know, you’re trying to be as clean, as sterile as you possibly can sometimes in kitchens that are, you know, absolutely communication horrendous. There’s dog hair everywhere and you’re dressing a wound, you know, all of these things and you’re adapting your infection control and you’re adapting everything that you do to fit into a home environment, and that’s what you learn when you shadow. You learn actually how to do what you do. How do you broach a concern with a parent when you’re in their home by yourself? How do you get somebody to open up to you when you’re in that, you know, there’s so much to learn and you shadow for a month and you get the basics for you to start learning. The networks beyond that and how, you know, the voluntary, the secondary and how it all fits together, how you refer to this service and these small insular societies that we get like, you know, to actually do have education with Somali women they don’t speak to anybody, you know, most of them don’t speak English. They have their own little community. (Hospital at home nurse 3)

Benefits: skills I find that it’s really important to have some flexibility in the workforce, plus I want people to really have those case management skills and you tend to have

more opportunity to case managers at CCN and you need to learn how to do that in a small scale for some of the hospital at home. So I make everybody work for part of the services. (Hospital at home nurse 3)

Benefits: skills At the Whittington and they do it at UCL, and they were free; they have postgraduate training every week, which the... a lot of junior doctors attend, and we’re welcome to go and join, so we can do that every Wednesday, and it’s teaching on different... oh, it’s a big variety of conditions, anything really to do with children’s, like, nursing and care, really, so that’s good, yes. (Hospital at home nurse 6)

Theme What they said

Benefits: skills You get to work with a lot of different professionals, like, from UCLH consultants and then [unclear 00:05:50] consultants. So you're getting quite a few skills from there. (Hospital at home nurse 7)

Benefits: skills We do ask for areas that we need improvement in, suggestions can be made as to how we need to improve those areas, such as going into clinics with other consultants. Like respiratory problems.

… and therefore our skills in that department wasn't there as such and so we in turn sat in clinic with different consultants that were asthma clinics, to try and get experience in assessing and things to… Like plans to make once you've made your assessment and so on. (Hospital at home nurse 7)

Benefits: team I think the good thing is that we’re a team within a team and under community nursing services there are, you know, children nursing in primary care, CCN, Communication complex care, there’re a variety of different services here. So actually children will Benefits: care move around the services. So, for example, you might have an asthmatic child who comes to hospital at home for, you know, to stretch salbutamol and actually that child as we discover in the home has very poor education about asthma.

So you might get hold of the GP and say, can we have them in the Children’s Nursing Primary Care Clinic because this family needs a lot of education and we would do that. So they might go there then for some further education and actually then they might need home visits because there’s damp in the home. It might be that, you know, there are other factors like obesity which is impacting on, so you might send them to CCN for a bit. So with regards to capacity there’s flex in the system depending on the child’s need. (Hospital at home nurse 3)

Benefits: team And I think we've got a better relationship with the consultants because we're calling them every day… So we've got a close relationship. I think that's why we're Communication getting more patients now. (Hospital at home nurse 4)

Benefits: team We showed them our policies and guidelines and how strict we are, and working with them on the ward round, we actually buddied up with the consultants. So we all had a consultant at Whittington and UCLH and we spent time with them to do clinics, ward rounds, and we showed them information we had about chest assessments. So I think that built a lot of confidence. And, I think, again, even the children's community nursing referrals have increased because they're building that relationship with us. (Hospital at home nurse 4)

Benefits: team I think, initially that input was needed. And then, where we are now, I think, it probably shows in our increase in patients. (Hospital at home nurse 4) Getting established

Theme What they said

Benefits: team So every Wednesday there's postgrad teaching that we can go to, and if we've got time we go to that. There's study days that we go on. (Hospital at home nurse 4)

Benefits: team And we have that close relation with our senior managers… that we can discuss anything and they can help us, because they kind of know more people that can help the families and more services out there that they would probably benefit from. (Hospital at home nurse 4)

Benefits: Team Is continuity of care something that’s as relevant to the service do you think?

Continuity

Yes, I think that is. [Overtalking]. I think it is, it happens actually because we’re a relatively small team. So the families will inevitably see quite possibly the same nurse the next day, not always, but they’ll see one of four or five nurses who are very, very closely involved with that family. (Hospital at home nurse 5)

Benefits: team I think there’s quite a lot of stability in the community team because it’s… it’s a good place to work. And I think there is a lot of job satisfaction. So it’s much,

much less turn… turnover.

I think we could get a lot of support from senior colleagues, and at [inaudible 00:09:27] time. And we’re able to, we have lots of meetings, you know. And we’re able to, kind of, bring up things that are difficult for each, problems or whatever. So we do get a chance to work through things quite a lot. It’s quite unique. (Hospital at home nurse 5)

Benefits: team I think it highlights just a different computer system, and just a slightly less cemented working relationship. But, you know, compared to a year ago it is so awareness much more embedded. We’ve worked really, really hard, we try… for one of us in the broad community chain to try and make an actual physical visit to UCH daily, I think. (Hospital at home nurse 5)

Busy? I think we've definitely been busier now than we've ever been. (Hospital at home nurse 4)

Communication …where for these acutely unwell you’re much more closely linked to the doctors and so you have to be having a conversation with them either everyday or sometimes a few times a day because the trajectory of their illness is changing. (Hospital at home nurse 3)

Communication We need as much information as we can. We don’t have diagnostic tools at hand. We need that kind of background information so that we can go and make a thorough and safe assessment. (Hospital at home nurse 3)

Theme What they said

Communication And what we found with UCLH we did the same with the doctors. They, of course, joined in with the governance arrangements. We paired up with them and Different sites actually we go to the consultants round every Wednesday as well. It’s been much slower and I think, [named individual] not being part of their team and not being there all, you know, championing it as a consultant I think that has an impact. (Hospital at home nurse 3)

Communication There’s less communication and mishaps… And if you're speaking to a certain doctor, they know that you've been dealing with that case. (Hospital at home nurse 4)

Communication I mean it really hinges on us communicating with each other by, through, electronically, by phone, text. (Hospital at home nurse 5)

Communication Well, all of the consultants at Whittington have taken it on, you know, they have. And similarly in UCH, there’s two of them that… I know are really working. So it’s forging links with the consultants actually, the consultants that are the key. (Hospital at home nurse 5)

Communication It’s very skilled nursing that we’re providing. It’s standardised. We’re all doing the same practice. It’s safe, it’s family centred. And it’s appropriate. We still keep our very, sort of, close working relationship with the lead consultant. We give daily updates by phone about the individual children. We discuss issues. So care is always being monitored, and overseen by the consultant responsible. And I think that’s a really good thing, we do that really well I think. (Hospital at home nurse 5)

Communication Like, we did have acutely ill patients and I was there for quite a while, but it is still... it’s nice to know that you have got a doctor at the end of the phone, normally, if you do go to a home and you feel uncomfortable or you’re not able to manage or deal with a situation, yes. (Hospital at home nurse 6)

Communication Yes, we have a UCL hotline, a consultant hotline, so we should be able to contact them at any time during our shift to voice any concerns or just to update them on patients, but it does... it is quite difficult because obviously they’re doing rounds, they’re reviewing patients, so you can’t always be in contact with the consultant at that point in time, so it can... normally you can get hold of at least a registrar, so yes, that’s helpful. (Hospital at home nurse 6)

Communication The majority of the time they know who we are, but when we... well, you do get occasions where you start to tell them about a patient, and they’re like, I don’t know who this patient is. (Hospital at home nurse 6)

Theme What they said

Communication Who’s in the service at that time, and when we discharge, we contact them to tell them to take them off the list. So whoever you call should be able to go into this, like, folder and see. (Hospital at home nurse 6)

Communication Yes, so I think that does need refining and especially sometimes we will get referrals emailed through to us without a phone call as well, and if we’re not... we Improvements don’t have access to a computer out and about, then it’s difficult to... well, they should... they should call us because it might not be an appropriate referral, and also if they’re sending that patient home and they haven’t even spoken to us and we’re not aware of them, it’s a safety issue again. (Hospital at home nurse 6)

Communication Even if you think it’s not appropriate, always just call us and we can discuss and, you know, we can try and help if we can, so... (Hospital at home nurse 6)

Communication I think we’ve had the UCL hotline, consultant line, introduced, and now I’ve heard there’s also going to be a phone contact that we can use to get the nurse in Improvements charge or the senior nurse on shift, so that’s, like, a mobile, so that would be a lot easier than waiting on the end of the line to get through to the actual ward phones, because that can be a bit tricky, especially if you’re in a patient’s home and you’re waiting for a decision to be made, and, you know, it can waste a lot of time just sitting around, but I think we’re definitely making improvements, yes. (Hospital at home nurse 6)

Communication Yes, it's quite easy to get through to people because, e.g., with the weekend thing we just go through the switchboard and ask for the paediatric consultant. (Hospital at home nurse 7)

Communication We might not have capacity to see that patient, or it might be even the refer patient, we might not have staffing as well, you know, to see that patient. Improvements (Hospital at home nurse 7)

Communication The one thing that needs improvement is more, like, communication, the doctors communicating better with the team… Yes, from both hospitals I would say… I think in terms of just them picking up the phone and speaking to the team first before making a referral… Just discussing the patients in more details. Because when they fill out the form they do tend to leave out information, just like the main things, you know? (Hospital at home nurse 7)

Communication More the headlines, yes, and when you have a proper conversation with them, then you have the opportunity to ask more questions about the patient and then you feel more secure, you feel more comfortable going into their home and, you know, seeing the families. And also, the doctors who are basically doing the referral giving the families more information, because sometimes even though [unclear 00:25:49] what the service is about and so on. (Hospital at home nurse 7)

Theme What they said

Complex needs I think we got a lot of complex care children with long term disabilities as well, who have benefited from hospital at home. (Hospital at home nurse 4)

Concerns I think we’re still in an evolution because there was some resistance right at the very beginning from both medical staff and others and it was a case of working through that and almost you having to prove your worth. (Hospital at home nurse 1)

Concerns You know, there were some negative feedbacks and then you have to, kind of, try and rectify that and then start again. You know, you got knocked down a bit at the beginning, but, so that was a bit challenging. (Hospital at home nurse 7)

Continuity It's mainly about four or five of us that are just doing hospital at home. So it's quite closely. So we know that week it will be two of us, early and the late shift, so Benefits: team we'll have that continuity and we'll try to keep the same patients. (Hospital at home nurse 4)

Continuity of It is beneficial when you’ve got the same kind of people that you’re handing over care to, but because we are quite a big team and there are quite a few of us that will just do the odd few shifts, so... but we always send an email handover at the end of every day. It’s like a graph and it will tell... have patient details about their diagnosis, recent activity, and what the plan is for a next visit, so even if you’ve been away for a week, you get the handover, and it’s got everything you need there, really, so yes, that’s been... it’s quite effective. (Hospital at home nurse 6)

Definitions and …it is actually still the part of the spectrum of CCN it’s just that the governance terminology arrangements are quite a bit different. So it almost came to life as a separate entity to CCN or kind of running parallel with it. (Hospital at home nurse 3)

Definitions and I see it as an extra arm of the community children’s nurse service that offers an terminology extended service in hours, in scope of practice. …which is much more extended than the, sort of, general standard community patients. The children that are also looked after by the hospital at home team are those who are a little bit more acutely unwell, so require a higher level of nursing care, or more nursing care spread through that day. So, two, three visits a day, extra phone contact. (Hospital at home nurse 5)

Definitions and Definitely you have to wear a different hat for each role. terminology [community nurse role versus hospital al home role]

… I find it very distinct, yes, very different. You have to have a different mindset with the Hospital at Home, yes. (Hospital at home nurse 6)

Definitions and And is it quite different working at hospital at home from doing community terminology nursing?

Theme What they said

IE Yes, it is quite different because we, hospital at home, you have to use a bit more advanced skills, because it comes down to assessing and then act upon the assessment. And, you know, you're more or less on your own out as well, even though yes, you've got a backup calling the consultant or calling your colleagues and calling everyone. The kids are slightly sicker than the community team, where community is more or less the well kids. (Hospital at home nurse 7)

Definitions and While with hospital at home, they're a little bit sicker and you have to do a lot of terminology assessment and then, you know, make a plan and set things up. (Hospital at home nurse 7)

Different sites So, UCH, they have got to also think about Westminster, Camden, and then Islington.... but I’ve noticed when I’ve been attending the ward rounds, and... from the patient as well, is that, who Whittington might think, oh, needs to go to hospital at home, UCL will be discharging, you know, to home without any referral to anybody. (Hospital at home nurse 2)

Eligibility They feel that when children, they come in, they get steroids, they have... they go home on salbutamol for it, they might not feel that that’s... warrants a referral to referrals hospital at home, whereas Whittington might feel that that child does need a referral, so there’s a bit of ambiguity in that really, for that. (Hospital at home nurse 2)

Eligibility We needed the governance in place. We needed to know that they knew this child was safe to come to us and also that we’re an equal part as a gatekeeper there. So when we get the referral, this is another reason why the information needs to be good, we’re the separate part of that gate-keeping process where we can say actually, no, that’s not appropriate for us or, yes, that is. (Hospital at home nurse 3)

Eligibility there was a list I don’t even know, it was about ten conditions giving examples of things that we could take, and actually over time as the trust has developed they refer lots of different things to us now and that’s about building up relationship where they trust us. They know that we’re safe. (Hospital at home nurse 3)

Eligibility I think how busy the ward are affects us, so if the ward is busy we'll get more children. If the ward is quiet, we won't have as many. But I think the busiest shift Case mix I've come on was we had about eight children on hospital at home. (Hospital at home nurse 4)

Eligibility We've done a step by step flow chart, which are all over the walls in the wards… again; the key into hospital at home is communication with both wards and Awareness community. (Hospital at home nurse 4)

Theme What they said

Eligibility Children who require support with vomiting and diarrhoea illnesses that would have previously stayed in hospital overnight, or during the day. That type of thing. (Hospital at home nurse 5)

Improvements We were quite involved with the paper work, the policies, guidelines and we had quite a lot of input in what we wanted out of it as well. We ourselves as nurses, Ownership actually, helped design the leaflet, posters. Some of the patient experiences. And trialing out paperwork. And kind of evaluating it. (Hospital at home nurse 4)

Improvements And did any patients, were any patients or families involved in the set up?

IE I know it's not a hospital at home patient but we have quite a few long term community patients who maybe like we would see in hospital at home, out of hours, if their NG tube came out or if they kind of had any other concerns, like with their pegs or something. We ask their parents how would they feel having that service to a later time and being able to call instead of having to go at eight o'clock in the evening to hospital just to get an NG tube and wait hours. So we had quite a lot of positive feedback. And that's how we got the parents involved. (Hospital at home nurse 4)

Improvements Doing a discharge letter to the GP health visitor and a copy for the parents. So if they're actually discharged from our case and don't need any further input, we send a letter to the GP, the health visitor and parents. If they do need to go back to the ward, we call the on-call consultant or the paediatric reg. We bleep them on the switchboard, speak to them, and they have a list of our patients on their lists. So they keep up to date. They know what's happening with their patients because all the doctors like change on shifts. We call them and tell them what's our problem and make a plan together. (Hospital at home nurse 4)

Improvements That’s... that is the main difficulty, I think, that we struggle with, but they are trying to put things in place to help with that. Actually, just recently we received an email today about they’re going to have a file on a database on their computer, so they’ll have every patient listed... (Hospital at home nurse 6)

Improvements Yes, they are getting better, yes. (Hospital at home nurse 6)

Improvements [the discharge process]

IT It’s got better. I mean, when we first started, we had... the children were under a lot of different, like, databases, so there was a lot of paperwork that was involved, which was really quite time-consuming, but I think just through trying different things, we’ve managed to get that down to, kind of, the programme, so it’s a bit better now, yes. (Hospital at home nurse 6)

Theme What they said

Improvements You know, it is the paperwork and just informing everybody, the doctors and, like, the GPs, and parents, but I think... I don’t think we can make it any sleeker now, really. We’ve got it down to...the minimum that we can. (Hospital at home nurse 6)

Improvements Now, under 20 minutes.

[Interviewer] Oh, okay, so it's better.

[Interviewee] It's way better now… Yes, about 20 minutes to do the discharge. So there have been quite a lot of problems on the way, but the good thing is that we've got quite a supportive consultant as well, so when we do have a problem we speak to her about it. If it's regarding the doctors, she'll go back and speak with the team and if it's regarding the nursing staff she will find a suggestion on ways that we can go about it. (Hospital at home nurse 7)

Improvements Again, it's about continuity, because they know what's going on… We're trying to get an office down there that they can see us and know us and we can also educate them more about the service and things…

[Interviewer] And you'd be nearer the families if they get referred?

[Interviewee] Right, we can just go up and say hello, yes. Because some of them quite like that. In fact, they when you come up and speak to them before even going to go…(Hospital at home nurse 7)

IT Initially, we had Medway, ICE, so we had to do ICE discharges, discharges from Medway and it was just really complex. (Hospital at home nurse 4)

IT We’re still working out these issues, you know, we’re still… you know, we’re taking… [overtalking]. Oh listen, we’re taking, it’s almost like we’ve got, you Improvements know, electronic records and paper records that, the paper records we use day to day carrying into the home, like midwives do, [overtalking]. Documenting, documenting, documenting. And then they’ve got to find at the end of the process, at discharge, they’ve got to find their way somewhere else while you’re still doing something on the electronic record to generate a GP letter and so on. And it’s all kind of secondary to us, but… if somebody completely new, [overtalking], it’s not intuitive. That’s completely my issue, [inaudible 00:39:31] this convoluted, now we have simplified it. Awful at the beginning, but it’s simplifying, we’re just so used to it now we’re just doing it, and you take a deep breath and you just do it. (Hospital at home nurse 5)

Limitations Development definitely but everybody, I think the difficulty here is particularly when you’re working across two, it’s political. So they UCLH they generate income for having patients so what’s the incentive realistically for them to give us their patients, you know, we have to make it attractive to them. So there’s all that kind

Theme What they said

of, you know, everybody’s going to get territorial, the nurses who were doing it, well, you know, does that mean? (Hospital at home nurse 3)

Ownership I would say it’s a nurse led service... (Hospital at home nurse 3)

Ownership But they’ve allowed us to kind of remain in control and I think that’s helped, and I think they trust us to call them when we need them. So, you know, they’re not worried that we’re out there doing crazy things to their patients. Actually they realise that if we’re concerned we call them, if they’ve not heard from us it’s usually because things are safe and we’re, you know, happy and we’ll just update them when we can. (Hospital at home nurse 3)

Ownership The first thing that we had to do was give them some control over the governance. So that meant bringing lots of consultants together to talk about the eligibility types of patients, the parameters, you know, what is an acutely unwell? How acutely unwell is appropriate? What’s a red flag? What can be safely looked after in the community? (Hospital at home nurse 3)

Ownership So I think actually being independent is very valuable, and also because we’re working across UCLH as well they feel that actually this is a community service as opposed to it being a provider for Whittington Health. (Hospital at home nurse 3)

Ownership The one thing that I would say I think that was key here was to have a consultant working alongside a nurse lead. I would say people were going to read the Model evaluation in the hope of picking up a tip that would be the one thing that I would say is instrumental in the success of it. (Hospital at home nurse 3)

Ownership Yes, it worked well because it was making the, it was helping to give us some validity in the eyes of the [unclear 01:10:01] some credibility. It would have been much more difficult without a consultant. It’s using that position of power, isn’t it, that’s what it’s about. (Hospital at home nurse 3)

Ownership The guidelines, our inclusion/exclusion criteria, we all worked, we had home meetings together alongside [named individual’s], all the seniors, so it was quite nice to be really involved from the starting to the start where we started getting patients and trying to go to UCLH and Whittington to, like, get their confidence in us and to send patients out to us. So that was quite nice. (Hospital at home nurse 4)

Ownership Setting up the service, it was really nice that we were so involved. I know it is a very nurse-led service, and I think in regards to, like, the policies and, like, the Attitude: SOPs and things, I know that was managed without us, a lot of it, but we were positive invited to many meetings and we’ve had the opportunity to voice our, you know, thoughts and concerns, and yes, you do feel quite, like, proud that, you know, yes,

Theme What they said

you’ve helped to make it what it is and... yes, it is... I do think it’s an amazing service.

And definitely parents have said that... because a lot of them ask, oh, is this something that you can get anywhere in, like, London, and when we say it’s just... it’s the first, kind of, hospital at home service for children in, like, London, they’re... oh, they think... yes, they think it’s wonderful. And a lot of the doctors have also said that they find it very frustrating when they’re on the ward and they’ve got this patient, and, oh, that’d be perfect for hospital at home, but they don’t have a GP in Islington, so they can’t refer, and they have said that on many occasions, that it’s... they find it frustrating that, yes, they can’t refer our patients to other boroughs. So yes, it’s good. (Hospital at home nurse 6)

Ownership Yes, I was involved in the development in the paperwork being set up and in things being put into place, what to do, setting up the equipment and stuff like that, so more or less involved from the beginning. (The equipment carried by the team is shown in Appendix 14 Equipment Required). (Hospital at home nurse 7)

Re-admissions Yes, some have had to go back in and we’ve referred back in because they’re not heading the right direction or it’s taking that bit longer – why is this? – or something else has occurred. So yes, we have referred back in. And generally, all of those referrals, it has been agreed that, yes, they were necessary. We had a meeting a short while ago around those children who had gone back, going through each one, as to was it the right reason to go back. Most were admitted; some weren’t but were reviewed and either it was agreed, yes, this is taking a bit longer than normal but we’ll accept this.

… And, if still the same on X amount of days later, then there will be another medical review. Some children have then gone on and they’ve been referred to other specialists for their advice; there have been two children where that’s happened. Other children have had, so that in particular was ENT referrals, ear- nose-and-throat referrals. Others have had to have a period of time back in hospital. Several children who had had very nasty appendix that had burst and needed treatment, then clearly weren’t getting better, the wounds were still very unpleasant, they were getting high fevers again, so there was a very clear reason to go back and several spent another week or more back in hospital again. (The procedure for emergency re-admissions is shown in Appendix 13 Procedure Emergency Transfer to Ward). (Hospital at home nurse 1)

Referrals We’re up at the ward round we try to do every day so they know us and, you know, they know the types of patients to refer to us, the referrals were good. They Awareness were appropriate. We get the information we needed, and then we have the new Communication junior doctors and we saw immediately a distinct deterioration in the quality of referrals, the quality of information that’s been provided to us, the types of

Theme What they said

referrals and I think some of that actually comes from people not understanding what we do in community, you know, broadly. (Hospital at home nurse 3)

Referrals Where the key to having an in-depth referral, telephone referral conversation. And sticking to our timeframe of, once you have a referral, seeing them within like a Communication certain frame. So I think it's two hours we have to see them. So then we're reducing that risk of having that missed through something. (Hospital at home nurse 4)

Referrals I think why it’s been a little less fluent with UCH, but that is getting better as well. [Overtalking]. There’s an e-mail, [overtalking], there’s an e-mail referral that’s, Different sites the link is on… [inaudible 00:13:55] or something. It’s on the UCH system, and it’s Improvements not, that’s not happening, it’s not working. I have one occasion where the … paediatric registrar simply couldn't find it, and it then, she ended up with reams of paper to fill in, and she struggled and struggled. So I just took the details over the phone. But, I mean, that was months ago. I think it’s okay now. (Hospital at home nurse 5)

Referrals I'm quite sure that their referrals generally to us, as a team, generally have improved, and they have taken up the hospital at home as well. Yes. So that’s progress. (Hospital at home nurse 5)

Referrals A lot of people struggle with referring kids, whether it's hospital at home or whether it's community. And also, another problem is the doctors not calling and Communication discussing the patient with us before making, before…[a referral] (Hospital at home nurse 7)

Roles We’re equally responsible so although that might be the main consultant and they’re accountable we have an equal measure of accountability within our professional scope of practice. (Hospital at home nurse 3)

Safety When we are on the late shifts there's someone on call, so we text them when we go in. we text them when we go out… So there're a lot of procedures in to kind of keep you protected. (Hospital at home nurse 4)

Safety We have, like, a safety device that we’ll do on the later shifts, that if we were to get into any trouble, we can phone up. (Hospital at home nurse 6)

Safety Then that child could've gone home and have the antibiotics at home. So obviously that's, like, one of the good things because then they just give us the window of providing more for families at home. But then the downside of that it's now on the staff, because travelling around at those hours is not very safe and, you know… (discussion of where they live and travelling time) (Hospital at home nurse 7)

Safety We have got safety badges that, you know, we can press the alarms and things

Theme What they said

that you need. (Hospital at home nurses carry a Lone Working Device, which allows their exact location to be determined and enables them to set off an alarm resulting in emergency services being contacted if they are in danger). (Hospital at home nurse 7) Scope We felt we needed to establish the hospital [referrals] first, get that, you know, working. What do we need to then, you know, jig around, alter, etc., as we go through. And it has taken quite a while for that to happen. (Hospital at home nurse 1)

Scope I think [the service and governance] it needs to develop and grow, and needs to be fit for purpose. (Hospital at home nurse 2)

Scope There is scope for improvement, and, again, I think, because, like, Whittington service Camden, Islington and Haringey. We’re the only team that has hospital at home, so people have to think disjointedly [?], so they think, oh, you know, that service is there for that patient, it’s not... so you have to be thinking different systems. So that’s one factor that doesn’t ease the referrals in. (Hospital at home nurse 2)

Scope I think over the summer months it... we’ll probably be quieter, because there’ll be less sick children, but where they might be sick from another kind of reason, but, you know, it’s easy at the moment, but I don’t know, in the future, how it will be. (Hospital at home nurse 2)

Scope It has to happen I think for us to impact on children going to the Whittington it has to happen. (Hospital at home nurse 3)

Scope If I’ve got it right, is that you have sort of a cap of about six cases per day per nurse and you maybe have two nurses on a day, is that right?

IE Yes. (Hospital at home nurse 3)

Scope And, I think, even like sometimes, say, when we need to do IV1 antibiotics and the cannula to issue or something, and we've had to send them back, they're just like, Limitations oh, can you not do it at home. And you feel bad that you had to send them back up. I think they quite like the idea of being at home and having everything done. (Hospital at home nurse 4)

Scope I anticipate the workload increasing because of demand. I think it’s been extremely successful. (Hospital at home nurse 5)

Scope And also perhaps the… the types of patients might become more varied. But I think that has to be really planned carefully, push those boundaries out further. [Overtalking]. You know, a lot of discussion, and a lot of planning was involved in

Theme What they said

looking at safety levels, and what are the safety nets in place for the types of children we’re expecting to… Now, that’s all working. (Hospital at home nurse 5)

Scope Of course, if it fast increases, [overtalking], that would impact, yes, yes. I mean, a child who requires three services a day for IV antibiotics, you know, that’s a 45 minute minimum actually. Very often more than that per visit. So if you have six of those children, if you’re the only nurse manning that service on a given day. (Hospital at home nurse 5)

Scope if you’ve got even just two patients on your list that require more than one visit a day and you’re one person using public transport and a lot of the UCL patients are more down towards UCL way, so from here it’s quite a journey, so it is just that struggle, trying to fit patients in.

But it is very unpredictable. You never... it’s such a... there is such a quick turnover, you can’t prepare each... like, each day, so it all depends. But then we’re very good at if we do get a referral and we say we haven’t got the capacity, then the doctors know and, you know, we’re happy to decline if we can’t accommodate; if it’s not safe for us to take them on, then I definitely feel, like, very happy just saying no, we can’t accommodate them, because of our staffing or... (Hospital at home nurse 6)

Scope I feel we are doing quite a good service opening from eight to ten. (Hospital at home nurse 7)

Scope (on expansion of scope to take referrals from primary care) It's nice to get referrals from different places. We have referrals from the neonatal units… Yes, it's still on the pipeline, because, you know, e.g., we're still trying to establish relationships with UCLH. (Hospital at home nurse 7)

Scope: age It’s difficult on the adolescent ward, maybe slightly more than the younger age range, because they have children from the south coast and anywhere, because they’ve got some special services. And when you’re on the ward and you’ve got people coming from all over the shop, if you’re thinking about your own locality… It’s very different. Yes, it’s very difficult. (Hospital at home nurse 1)

Scope: I think we need to get a neonatal jaundice pathway up and running, so that we diagnostic can try and convert [?] some neonates. I think we need to work more closely with conditions the midwives to get the babies, you know, so they, instead of them sending them to hospital, they’re sending them to us, in a direct referral pathway. (Hospital at home nurse 2)

Scope: It will be taking more jaundice. Again, I think this has to be looked at in a slightly diagnostic different way because, of course, there are services. So, for example, UCLH have conditions community neonatal nurses and the Whittington do, now they don’t do, the Whittington community neonatal nurses don’t do phototherapy so we hope we

Theme What they said

can do that. But UCLH they tell us that they’re doing phototherapy but also, you know, there’s the push from the transitional care units and the units where they do phototherapy. (Hospital at home nurse 3)

Scope: It’s quite difficult at times covering the service, because it’s only sort of the few limitations nurses that are doing hospital at home continually. It only takes for one to be off unwell, or one to be on annual leave and that’s a real strain on the rest of the team. So it feels like we just need more nurses. It feels like sometimes. (Hospital at home nurse 5)

Scope: Yes, that does happen on occasion, that they will mention to the family, and the limitations family will get all excited, and then you will be, like, sorry, we can’t. (Hospital at home nurse 6)

Scope: locality I think a bit. I think certainly we’re starting to see, because the other thing is that sometimes they have children they want to refer, but they don’t actually live in our area or they don’t have a GP, because that’s one of the criteria, they have to have receipts and a GP because it’s paid by the CCG. And so, that’s why we’ve not been able to. So, the child might live in… We’ve got this slight dichotomy, say the child lives in Camden on the border but has an Islington GP, so that’s fine. The other way around, where they might live on the border of Islington but they’ve got a Camden GP, and we can’t do it. So there are these difficulties that mainly we can’t get over. (Hospital at home nurse 1)

Scope: primary I think the GPs might be frightened initially, but I think once they get used to the care service, because we’ve also set up, you know, the primary nurse... the nurses in primary care, and their referrals are really coming in now, and I think, you know, once the GPs get familiar with the system, you know, they... it will take time like everything else, but I think they will refer in properly. (Hospital at home nurse 2)

Scope: primary I think we’re going to have similar issues. I think it’s going to be worse I think care because, of course, each GP is their own business. So rather than dealing with two organisations like the Whittington and UCLH we’ll be dealing with 36 organisations across Islington each one with a different way of working, each one with a different relationship with community nursing, and I can speak from experience here because the other projects that I manage which is children’s nursing in primary care, we’re setting up clinics for specific conditions for GPs and it’s been a real struggle, and that’s for people who aren’t acutely unwell. (Hospital at home nurse 3)

Scope: primary So do you think things like getting referrals from other sites, like GPs, is a way care forward?

IE Definitely (Hospital at home nurse 4)

Theme What they said

Scope: primary We can go see them at home instead of them going to A&E, waiting there for four care hours and then being referred… So I think GPs are key to get the patients before they reach hospital. (Hospital at home nurse 4)

Scope: primary At the moment, it is just hospital-based referrals that we would receive, but we’re care trying... I mean, the plan was to get GPs able to refer to us and I think that’s still in the process or we’ll get the order in one and... but it is a very individual... each referral’s very different and you have to take each one as it comes, and sometimes you do, kind of, not stretch the service, but you do try to accommodate each one as much as possible, so yes. (Hospital at home nurse 6)

Scope: skills The only downside, I think, we might just need a little bit more training on maybe things like cannulation which can be tricky in paediatrics. (Hospital at home nurse 7)

Scope: training Yes, I think we’re very well supported about that (training). There just never seems to be enough time to do this. That’s the thing, you know, the fantastic study opportunities come up, and learning opportunities, training by consultants and so on. But, because you’re tied to the patient workload you don't always get the chance. (Hospital at home nurse 5)

Skills We specifically recruited some new nurses who had more acute skills. And actually they’re very used to liaising really regularly with doctors because that’s what you do on the ward. There’s always a doctor there. You see them for the ward round a few times a day. You keep them up to date. (Hospital at home nurse 3)

Skills I worked in A&E before. (Hospital at home nurse 4)

Skills I believe its experience. I've come from the paediatric ward setting. (Hospital at home nurse 5)

Skills So the types of conditions that we will [inaudible 00:04:25] or in the hospital at home are, I’d, it’s part of the caseload I would have looked after on the ward, some of whom require antibiotics three times a day. (Hospital at home nurse 5)

Appendix 2 Selected quotes from interviews with the hospital at home referrer team

Table 2 Theme What they said

If you didn’t have the service to refer into, what would happen to those young people that do get referred? [Interviewer]

So, I think a lot of those patients would either end up staying longer on the ward, so I think you’d have longer in-patient stays, or I think you’d end up, I think, having to discharge some patients… So, yes, longer time in the hospital, but also, on discharge just not having that safety net. And I think it’s just something you can offer to parents to provide that bit of extra support. Because some parents …also sometimes for parents, they feel the need that they want someone to kind of come and look and say it’s all okay. And I think you’d lose that confidence.

But I think the main thing would just be, you wouldn’t be able to discharge the ward in the same way. And I think that you wouldn’t get that service in the community. (Referrer 16)

Attitude There hasn't been the excitement that I was hoping to see. (Referrer 7)

Attitude And a service that is not widespread, so the argument is everybody else is managing, why do you need it? (Referrer 15)

Attitude: negative I just don't think it's worked, which is a shame. I think it might have worked, but it's been very heavily protocol driven and guideline driven and not enough clinical, not enough… I don't think the nurses have been allowed as much input. (Referrer 7)

Attitude: positive I think overall it’s good. Yes. And I think it’s progressing. (Referrer 1)

Attitude: positive If the children weren’t referred into the service, if the service wasn’t available, what do you think would happen to the young people? Would Scope they be discharged home without the support, or would they stay on the ward?

IE It would depend on each patient. The two options would be that we would discharge them home, but then you run the risk of them kind of readmitting themselves quite quickly if they’re not happy. Or they would stay with us for that little bit longer - which again is fine - but it’s obviously

Theme What they said

using cubicles and beds for a little bit longer than what we would hope. (Referrer 2)

Attitude: positive Is there anything else practical do you think that could be done better?

Scope IE No, I think it’s a really good system, and it would be amazing if we could offer it to more boroughs especially because again all the central kind

of London hospitals cover quite a few boroughs. So it would be good to know we could offer it to more people, but no I think the process is very good and it seems to be working really well. (Referrer 2)

Attitude: positive We’re impressed with it [the service] and it seems to be going really well. (Referrer 2)

Attitude: positive I don't think so. I think that, you know, there are certain ... I think where it's made the big difference for the Islington patients, well the patients that the Scope GPs are worried are the three times a day antibiotics. So those patients often, we would send them home for the day and then they would have their antibiotics at home in the day, but they would still take up a bed or a cubicle overnight where we would give them two night time doses, or sort of…

So I think it has made a difference for those patients. I think it has made a difference for, you know, but otherwise I mean there are some ... I don't know in my heart of hearts how much better it is than the community service that was already in place, because most of our, its only really the three times a day antibiotics, I think most of the other children would get, we would get by with the community nurses. Because they are very good, the community nurses. (Referrer 3)

Attitude: positive And everyone’s very happy that there are extended hours for giving antibiotics to children, getting them out of hospital. (Referrer 4) scope

Attitude: positive So that’s definitely been an unintended consequence of… hospital at home has been the safeguarding advantages of the nurses going into a home, Scope picking up information that we didn’t have in the hospital. So we worked… I Benefits: care visited children’s centres, spoke to family support workers, health visitors, community paediatricians, school nurses, because, actually, it goes much broader. So I think that, you know, we can pull a handful of cases where there’s been improved safeguarding because of the child being seen in the context of their home rather than just Ifor ward. (Referrer 5)

Attitude: positive I was initially quite excited about the idea of the service. I thought it was a good idea. I liked being able to keep patients out of hospital, you know. Benefits We're different from other services in that we've got, you know, lots of…

Theme What they said

Children have one or two competent, possibly competent carers that would keep them out of hospital more, so it seemed like a right way to be going and I… So I like the idea. I still think it's a good idea. I, you know, as I said, I've got my reservations and I'll come back to those, but I think in principle it is a good idea. (Referrer 7)

Attitude: positive I think the person in charge, particularly [named individual], is quite meticulous and I’m sure [named individual]’s, careful, especially if it’s a new service, so I’ve got to... you know, I, sort of, trust [named individual] to do what [named individual] needs to do. I’m not aware of any major issues since August and I think I would be aware….I’m not aware of any significant incidents since it started in August.

… So that’s good, because you’d expect the problems to have arisen by now. (Referrer 8)

Attitude: positive I think it’s a great idea. I think it’s a great idea. (Referrer 9)

Attitude: positive I was impressed by, once I started, how long it... how long it didn’t take to make it happen, so it was... it was done in a refreshingly speedy time, and it became pretty obvious to me that it would work. (Referrer 10)

Attitude: positive [talking about consultant support for the service] The fact that you can teach old dogs new tricks is good. (Referrer 10)

Attitude: positive Yes, I think that’s [unclear 00:04:51] provide a brilliant service. I think that just probably could be a few more patients that are sent out. (Referrer 13) Referrals

Attitude: positive It’s brilliant. …We definitely want to keep it. (Referrer 16)

Attitudes: positive Even though the model has been relatively successful in that people are actually being referred in and parents giving very good feedback and Communication professionals are seeing that it lessens the pressure on the wards in winter, it is such a big mind shift change for hospital clinicians, and that’s nurses as well as doctors, that you just have to keep reminding people, keep working on. (Referrer 5)

Attitudes: positive [The hospital at home service] A good facility… and to the families. (Referrer 8) Benefits: family

Awareness I should have been to some of the initial meetings and also the process of fine-tuning the referral process and the conditions and the criteria to be referred. (Referrer 1)

Theme What they said

Awareness [Interviewer] And I wonder if they had more of a physical presence at UCLH if you think it would make a difference or...?

[Interviewee] Well, that’s why we have actually... making some effort to Communication change that, so. We met with some of the nursing staff in the hospital at home and our team, so. We are creating a desk space within our Team Room for them and they are very interested, though not really have started yet, so. We are trying to install the IT system in one or two of the computers on the [name of children’s ward] Team Room so that the hospital at home team, over the weekend... but especially because they claim that they have no home to go to at... over the weekends and we suggest that... whether they could use one of our desks here as their base over... at least over the weekend. I mean, the more they are here I think it will serve both as a reminder as well as improve our working relationship as a Team because we hardly see them. (Referrer 1)

Awareness So I was aware of it [the hospital at home service] when it got introduced on the ward… I’d say it really kick started on the ward in the last four months [interview date August] (Referrer 2)

Awareness Since before it started, I think. Since the preliminary meetings about introducing it and when it was introduced in, sort of, in its early days. Communication [Interviewer] Yes, I think there were a series of workshops maybe around last May. Did you attend those or...?

[Interviewee] I didn't go to... I think that [named individual] came to talk to us as a consultant group, in a consultant meeting. And so that was ... and I also attended actually, I also attended one of the Islington [unclear 00:01:58] I was talking at an Islington GP event and so I was there when the, when the, you know when it was sort of presented to the GP's as well. (Referrer 3)

Awareness There’s a lot of scepticism and a lot of cynicism with regard to the, with regard to how much of a demand there really is for a service to manage Differences sites acutely unwell children at home. What everybody is very pleased about Attitude: here at UCLH is how we’ve got to know and build a better relationship with the community nursing team and hospital at home happens to have been the mechanism for that, which is fantastic, given how previous efforts to relate to the, to get to know these nurses better as the children’s community nursing team haven’t really ever quite happened. And I think those personal links have started to develop and are continuing to develop. (Referrer 4)

Awareness So emergency department has got an entirely new paediatric nursing team since we launched. The acute ward on Ifor has got a completely new cohort

Theme What they said

Communication of nurses. The junior doctors change every six months. The lead consultant rotates every eight to ten weeks. So I think, if you’ve got a new service, they sort of forget. (Referrer 5)

Awareness I work on a ward where I know and see this team of nurses to whom I’m delegating care for this patient. What was frightening them was Concerns delegating care of a patient who remained under their name in terms of accountability, to a team of nurses who they didn’t know, who they weren’t visualising, you know. (Referrer 5)

Awareness The consultant, attending consultant, sees the child on the ward and, yes, at home they’re delegating care to a team but it’s a team that they know. (Referrer 5)

Awareness So I think it was actually about relationships. So we did a lot of work where the nurses spent time on the ward, came to all the ground rounds, visited UCH, spent time in A&E before we launched the service. March, April, May, June, July, so the months’ prep … I think was really, really important. (Referrer 5)

Awareness I think it was good to surface the elephant in the room, to surface the, sort of, doctor/nurse divide the hospital community divide. So even nurse to Concerns nurse, hospital to community, there was, kind of, prejudices, anxieties, Communication perceptions. …if we hadn’t surfaced it and tackled it, the service would have failed…. So we needed to surface it in order to say this exists, how are we going to tackle it, because otherwise we will not get referrals. (Referrer 5)

Awareness They think they’re [the nurses] less busy than they are. So it’s a lack of understanding of what goes on in the community. (Referrer 5)

Awareness I think it started about a year ago…. I didn’t go to any workshops, so my only involvement was to tell [named individual] that I was anxious that there were clear pathways that made it clear at what point patients should be referred to hospital, you know, to deal with the management of risk, but that was my only involvement, really.

… I mean, I emailed [named individual] and I think [named individual] took it on board, so I assume it was addressed. (Referrer 8)

Awareness Since its inception. Yes, very much so. (Referrer 9)

Awareness I don’t know, I think it’s better than the community nursing for the reasons that I’ve stated, that, like, I know who they are, I know how to contact Benefits: team them, I know their faces, they’ve come to us. I think it’s under-utilised still, Attitude

Theme What they said

so they’ve been, they’ve had one or two patients in their hospital home, I don’t know what they’re [unclear 00:08:24].

But, I suppose, from a patient’s perspective, it is good. Is it, though? Do you want your child to be looked after…? Well, for unnecessary hospital stays, I suppose it’s good. But if your, if you’ve got probably a sick kid, you want them to be looked after the safest place. So, well, I think those things happen because they’re, I think… Sorry to put those things in place. I think it probably is safe. I think I thought at the beginning that the nurses were incredibly junior. I think they were, and even probably just a year or… they’ll feel a bit better but, yes, they felt very junior. (Referrer 9)

Awareness And when they come up to hand over in the afternoon, it’s nice to have them there, and they’re sort of looking around for patients, which has been Communication quite a joy this summer, so they’ve been doing that. Obviously it’s great Benefits: team from my perspective, because they’re looking for people that they might be able to take off my hands. (Referrer 9)

Awareness At the very beginning... I did attend some of them [the workshops]. (Referrer 12)

Awareness We have MDT meetings and they brought them up at those. And they showed slides and stuff at those. (Referrer 13) Communication

Awareness I think when [named individual] the consultant who runs the service, when she’s on and it’s her week, she's excellent. And she refers them all to hospital at home, and she looks at them, and analyses them, and then she refers them out. When she's on, hospital at home will always say how busy they are.

Plus, like, you’d see a fast reduction in the patients who are actually on the wards, so I think, she’s got the… she's doing it appropriately. Whereas I think some of the consultants are... you know, not as… maybe they're just not as confident to actually discharge patients. (Referrer 13)

Awareness I think it needs to be awareness, I think it needs to be further education. I think and bringing it up more regularly at meetings. I think this time of year

it doesn't really matter too much because obviously the ward is not going to be as busy, you know, hospital at home's not going to be as busy. But come the wintertime you know, I think it is quite important that it’s used. (Referrer 13)

Awareness I was involved at the beginning… there were some workshop groups that happened at the beginning in its infancy to get it off the ground… I’m aware

Theme What they said

of the Service and the children that can go to it and who can refer to it and... you know. I’m familiar with the girls that work in and amongst it. A couple of the nurses used to be A&E staff. (Referrer 14)

Awareness I would say in terms of the team, some of the girls come to A&E and say hi and remind us... say, have you got anything? So I think when they do that, Communication that again is a trigger and we’ve got new nurses... a lot of our A&E is new. (Referrer 14)

Awareness I was involved in discussions with the service setting up.

… I was involved in those workshops (Referrer 15)

Awareness I think the people work very hard to make their presence known. (Referrer 15) Communication

Awareness When I was on neonates, because I’d started out there, I wasn’t as aware of the hospital at home service from the neonatal side. And then, coming onto paediatrics, obviously you become really familiar with it. And actually, now you see, so, the team that did paediatrics first and went to neonates are now using hospital at home from that side. And you see that now that they’re aware of it, that they use it… really effectively for neonatal stuff as well. And looking back, there were a lot of things we tried to do in neonates that could have been done more effectively with using hospital at home. (Referrer 16) awareness Because I think that I under-utilised the service for the first six months. And I think on the paeds side, it’s well known about, but I don’t think it is, necessarily, on the neonatal side.

…so we often, on the neonatal side, we’ll have a baby that’s on antibiotics for seven days because they’ve had a high CRP, but actually they’re really well. And they sit on cellular for seven days. And actually, they could just go into hospital at home, where they could have reviews and all the things that they’re having on cellular, so a clinical review, feeding review and that at home.

…, from personal experience, I’ve just seen how much I didn’t know about it and never used it.

Yes. And I think it’s just seeing the people who’ve started here and then have taken it to neonates and seen what they can now do with it. And I think the neonatal consultants aren’t really that aware, necessarily, always, of the scope of hospital at home. So I think, like, they…(Referrer 16)

Theme What they said

Benefits I think it’s big challenges. Is it really cost-effective, really? So, yes, it’s a great service, but what is it really providing over and above community Communication nursing? And I don’t know the answer to these questions. What is the evaluation money attached to its service? Like, how much more expensive is it than community nursing? I don’t know. I don’t know, I don’t think it’s better than community nursing, in that, in, literally, in the communication actually. And the knowledge that you sort of keep, those patients sort of slightly closer to home, and they’re just sort of disappearing to the ether of the community, from our perspective anyway. (Referrer 9)

Benefits Some basic level of guarantee that we can do stuff at home. Safe care as close to home as possible. (Referrer 10)

Benefits One of the things that’s completely nuts is, you know, babies of... newborn babies of first-time mums being admitted to hospital because they’ve lost too much weight and they’re too dehydrated to be at home, from the community midwives’ perspective, but wind up being medicalised, being denied access to, you know, breastfeeding advisors or...

You know, so we wind up over-medicalising and more infants winding up bottle-fed than need be, you know, and as an integrated care organisation, this should be a no-brainer, this should be something we actually excel at because we are in control of all of the community and the secondary care, primary and... you know, all of that - universal services - and we should be able to engineer something that’s much, much better and much, much more sophisticated. (Referrer 10)

Benefits: care So the nurses have helped navigate a child to the correct specialist if they’ve developed complications. So, for example, a child with an allergic reaction to henna tattoo, the allergic reaction got much, much worse, much deeper, so the nurse navigated that child to Chelsea and Westminster Plastics which, saving them endless contorted routes. (Referrer 5)

Benefits: care There was a child posed a very complicated appendectomy… And the nurse changed the dressing, palpated the child’s abdomen, felt a collection and she rang on behalf of the family, and the child was seen by surgeons and re- operated on. (Referrer 5)

Benefits: care Because what we have in Islington and we have in Haringey and we have all over London is we have a very heterogeneous spread of quality of Attitude: positive paediatric care provided by general practice.

Theme What they said

… So anything that raises the bar and standardises things so that all families can get a more equitable deal from their primary care must be a good thing. (Referrer 10)

Benefits: care [Benefit of the service] useful to know that you can free up beds and people from the ward, and also that you’ve got that sort of additional input of someone being able to go in and do the clinical review. So extra to what you would get from [unclear 00:08:00] going in and giving antibiotics. So it’s that extra safety net. (Referrer 11)

Benefits: earlier Well, never actually even bringing the children in would be even better, and discharge bringing them, getting them out quicker. Although we… I think, as an acute general paediatric service, generally, not just us, we get children out much faster than many other specialties, so that's… So it will just mean that there's even, they're even faster, getting home. (Referrer 7)

Benefits: earlier What would have happened to those children if you hadn’t referred them? discharge

Scope 00:05:35

IE They just would have stayed in hospital for longer on the ward.

IE Yes, I do, yes, I think so. (Referrer 11)

Benefits: earlier I’m sure there are some people who are benefitting from it and are able to discharge go home sooner or possibly avoid an admission because of access to the hospital at home team. I think there are some other people who have been referred to it because it’s an extra level of reassurance that wasn’t there before. (Referrer 15)

Benefits: family Oh yes, for families, where it’s clinically appropriate it’s fantastic. I’ve got absolutely... it’s fantastic for everyone who goes into the service where, if it’s safe to do so and obviously the benefits of being at home and for the family, you know, are tremendous. (Referrer 4)

Benefits: family It was a… part of the, kind of, nationwide move to shift care that can be given at home into the home and reduce inappropriate use of acute hospital resources as well as improving the experience for the patient and their families. (Referrer 5)

Benefits: family Yes. So the benefits of the Service are...? [Interviewer]

Theme What they said

Scope

Increased patient satisfaction of course.

It’s much nicer to be at... to be... your child to be at home rather than hospital. You can give antibiotics up until midnight, so. You can give three times a day, antibiotics which you couldn't do before, but, again, that’s back to the, you know... if we just appoint a Nurse until midnight you might be able to do that. And the benefits are, anxious parents that you might keep in, in the afternoon, because they’re anxious you could send home and get hospital at home to see, so, just a reassurance thing as well, so. You know, they are really good benefits. The question is how much of that... how much of all your referral are that group and how much are a group that actually... if you didn’t have the Service would you send home? …Would they really have stayed in hospital if you didn’t have the Service? (Referrer 12)

Benefits: family The benefits - the patients who are nursed at home, the majority of patients, you know, all the evidence and research shows that most parents want to have their child at home. So I think that's the main benefit, you know, provide an excellent service. Or some service for paediatrics in Islington. You know, we work closely with the hospital at home team, and I think that's quite good.

I think, you know, having [named individual] as a consultant both on the ward and for hospital at home, you know, she's very enthusiastic. She's got excellent communication skills and she does a fantastic job. I think she tries to, you know, involve both her hospital at home team and the nursing team here; which I think is really important. And obviously the doctors as well, obviously I'm looking at it from the nursing perspective and the doctors’. But I think, like, you know, in herself, she gets challenged, I'm sure it’s not always easy for her, but I think she really does try.

…No, I just want to say how fantastic I think [named individual] is really. I think, like, you know, it hasn't always been easy for her, I think she has met challenge to other staff, and I think, like, you know, she's doing a fantastic job. (Referrer 13)

Benefits: family In an ideal world, it would be nice to say, well, it keeps people close to home and they like the service and it’s more family focused, which is great, but evaluation unfortunately, I think in the current NHS climate, that in itself is not enough. You have to prove that financially it makes more sense, because we have a

Theme What they said

limited pot of money and we have a lot of people crying out for that financial need and I think just selling it purely on the basis of it’s nicer isn’t going to be enough to persuade people to continue to fund what is a relatively expensive service. So I think the argument – I think its biggest Achilles heel is its justification for its cost effectiveness and the best way to defend it is to find clear evidence that you are preventing hospital admission and by doing so saving the cost of a bed, and I presume the service is funded so that it’s cheaper than a bed day. If it’s more expensive than a bed day, then we haven’t got a leg to stand on. (Referrer 15)

Benefits: team What you’ve got with these nurses are nurses who are integrated into the system and know all the resources. (Referrer 5)

Benefits: team Fundamental, because if you just dropped a team of eight nurses into Islington, you would not have had the service that a team of nurses who’ve been established since the 1980s have been able to deliver. (Referrer 5)

Benefits: team I think, you know, nurses are always going to be trusting what the parents say. The more experienced nurses will obviously have eyes at the back of their heads that the younger nurses won’t necessarily have developed yet, and, you know, that’s why you’re going to need a seniority skill mix and good supervision for the younger nurses; well, all the nurses, everybody should have good opportunity for supervision and discussing cases that are challenging. (Referrer 10)

Communication The other thing I think we reported in various meetings is this so-called either huddle or the communication between hospital at home and the different hospitals. I don’t know what has been agreed. I think at the end of the day that we are still contacted on our mobile probably... I think maybe more regular, but it’s still not a very organised way to do that and often I get a call right in the middle of a meeting from the hospital at home Team trying to agree an update about the patients from UCH, whether a decision... making a decision, and so on and so forth. Obviously it’s partly also our own fault and our system of registering and keeping track on these patients, so...

… I may not be in an area which I can access any information and I’m not sure how much that is... can be very useful exchange of information and decision making…

… I thought that has been agreed somehow, and the timing of that, and also if I’m right in the middle of a meeting it can be quite difficult and also if I do not have access to the information of that patient and if I do not know them it’s not so successful then. I want to be able to access the EPR, for example, to know what has happened to that patient while they are on the

Theme What they said

ward, and so on and so forth, to make a more sensible decision about subsequent management while in hospital at home, whether the person is ready for discharge or any further action is required, for example…

…That’s, again, you know... that’s something that, you know, is an issues that can be looked at and resolved, you know. You can find a practical solution to that. (Referrer 1)

Communication I think it’s a matter of reminding ourselves. We... I mean, I did raise that point at some point in the past. It’s... they are... I’m not seeing too many Awareness reminders around the place for your Service. (Referrer 1)

Communication So where on our nurse’s desk we have the inclusion criteria poster and a step by step of what needs to be done. So I think it’s quite… well from my Referrals point of view it’s quite clearly thought out what you can and can’t refer. (Referrer 2)

Communication I think it has developed with a lot of, I think a lot of enthusiasm, especially on the part of the nurses delivering the service, so you know they've been Scope very ... you know it's very difficult for us, because we are sort of in this ivory Eligibility tower at UCLH and we are not, sort of, properly integrated. So we don't have the community nurses on our doorsteps and I think they have been, they have been very good about sort of physically coming over and sort of turning up to the ED and the wards and sort of scouting for, scouting for business, calling us when we are on call to ask if we have got any patients who may be, may be, you know may be appropriate. (Referrer 3)

Communication The challenges for me is, when I'm on call, there is no inkling on earth who they are talking about. So the idea is that the nurses call in to the attending Referrals consultant in the afternoon. But what happens is that call often doesn't Awareness come till after hours and so, if you are on call you may not necessarily have heard about the patient from two or three days ago who is on antibiotics.

So you sometimes get a call to say, just to let you know, this is what is happening or to ask a question about duration of antibiotics and so on, and sometimes that can be a bit of a challenge when you don't know the patient and have to go and find out and so on. (Referrer 3)

Or, that I find a challenge and also there is, I guess there is also a trust issue with some of the consultants because, you know, these aren't nurses who are, you know, you know on the ward which nurses you trust implicitly and which ones you sort of want to keep a better eye on. And, you know, I think as the relationship builds you know, for example, [nurse name x] and [nurse

Theme What they said

name y], and so on, you know, I know them and I know if they ring me with something that it is going to be spot on. But some of the others I don't know, so ... again it's like, you know, it would be much better if we were better integrated with the nurses, I think that there would be maybe more. (Referrer 3)

Communication We should have a spreadsheet of who is at hospital at home and we have a hand over sheet and we have trainees who sort of keep a log of who is at Referrals hospital at home but the thing is with the ... we used to be a manually managed sheet and now it's sort of generated directly from the ward list so, you know you have to be a little bit, you know like, unless you're, unless you're in the general [unclear 00:12:37] and then on call is shared by oncologists and endocrinologists and so on. So I think that, you know, you have to be sort of, pretty savvy to make sure that everything is in the right place on the right list because it doesn't happen without a bit of effort. (Referrer 3)

Communication Have you got that feeling of ownership or do you think it’s somebody else’s…? [interviewer]

Yes, no, I do. You know, at a personal level.

But certainly, I think, the idea of different stakeholders being involved in its design and in its review and ongoing, sort of shaping it does work. So having a commissioning GP in the core group… from another acute provider that feeds into the services is all important. (Referrer 4)

Communication I think it’s, I think it’s well publicised. I think people know about it. I think we do think about it. I think we could, we could do more, perhaps, within ED Referrals itself to make our registrars think about referring patients directly, rather than the ones who come in through the ward. (Referrer 4)

Communication I still get consultants going they’ve got to ring me and I’m having to go, no, it’s a reciprocal partnership. You’ve got equal ownership with these patients. If they’re on a, you know, you need to take as much ownership as the nurses. That’s the kind of thing you’re constantly battling against. … This is part of the clinical governance, part of the safety thing that you have a conversation about, one year on…(Referrer 5)

Communication Yes, maybe from their point of view it's not necessary. It may be a luxury that we don't need. It may be that they [unclear 00:11:14] and nobody can face doing it. But yes, for me, you know, being called every time I'm on call by yet another person to discuss somebody who I've sent home, it just

Theme What they said

doesn't… I don't know, it just, it rankles actually, to be perfectly honest. I don't feel that my skills…(Referrer 7)

Communication Is that something that works well, does the communication work?

IE Yes, I think it does work. (Referrer 8)

Communication … Sometimes I’m a bit unclear of whether I need to phone the nurse or whether the nurse needs to phone me. (Referrer 8) Referrals

Communication Communication, so, you know, if I discharge somebody to a community nurse, I haven’t got a clue who they’re going to, really, whereas I know the hospital at home team. I know who is seeing the patients, and communication doors are open. (Referrer 9)

Communication [Interviewer] And you don’t mind taking phone calls from the nurses?

[Interviewee] No, I don’t mind taking phone calls from the nurses, no. (Referrer 9)

Communication I mean, it’s good for the communication and it’s all about communication. So it is good in a way. I mean, I’m probably belittling it. Because I would talk Evaluation to somebody and give… and be happy with their clinical judgement because Attitude: positive I know them and I’ve seen them in other guises. Yes, so it is good. It is good, just had a lot of slating. People that I’ve talked to have slated it and maybe that’s kind of my judgement of it, that it’s an expensive service for nothing. (Referrer 9)

Communication Main strengths? So, I think probably the nurses who work in it are probably the main strength. They’re all really good, really, really professional… and Benefits: team they’ve already, kind of, thought of the solution before they ask you a Benefits: family question. So, I think the nurses are probably the biggest strength of it. … Also the daily conversation with the consultant, so that those patients are still part of a ward round. So, I think that’s also a strength. So they’re not… Because sometimes patients that go out just to CCN, they’re kind of out in there, you know that they’re out there, and you’re chasing results, but it feels a bit as if they’ve … It definitely feels different to hospital at home. They feel as if they’re discharged. Whereas the hospital at home patients are very much still in your consciousness. So, I think that’s another strength, doing the ward round.

Theme What they said

The major strength of it is just that these kids can go home, that they don’t have to sit on a ward when they don’t need to. And you’ve got… And there were a number of times when hospital at home have brought back in children really appropriately that actually, either they would have sat in hospital for four days, or they would have had that deterioration and not been monitored. So, it’s definitely shown itself to be really useful. (Referrer 16)

Communication So, again, it’s consultant-dependent. So, I think some consultants don’t necessarily always check in as frequently as others with the hospital at Awareness home. But I think it works pretty well. We get called sometimes by the hospital at home nurses.

… I’m not sure who makes the call, which way. But I know that that happens. But then, often the hospital at home nurses will call our office and just say, you know, so-and-so’s cannula’s come out…So they liaise.

I find the communication between the junior team and hospital at home is pretty easy. And that they’re pretty easy to get hold of, and they’re pretty responsive, and, like… I don’t know. They’re very… they’re always willing to try and, like, I don’t know… They’re very, kind of, on top of things. You get… You very much get the, kind of, idea that the answer is very much yes, if at all possible, they will try. (Referrer 16)

Concerns Some of the data collection is problematic.

Attitude … It’s not either clear to me whether the actual software used or the people involved in the collection or providing data becomes... poses various levels Evaluation of difficulties. And from the little I looked at them it’s really either they are inaccurate, incorrect or insufficient.

And I think it will be extremely difficult to perform evaluation if data collection itself is not either as robust or as reliable as it should be. (Referrer 1)

Concerns We also wanted to draw on evidence of other models in order to, sort of, demonstrate to people that this was a safe concept. (Referrer 5)

Concerns Incredibly difficult, the, kind of, prejudiced comments that people made, the resistance, this was something that was a CCG and commissioners’ idea Communication that was top-down in concept, and immediately realised that we had to make it a bottom-up model that people owned if it was going to be successful. …

The biggest challenge was stakeholder engagement. (Referrer 5)

Theme What they said

Concerns Well, it’s no longer nurse led... So it was very threatening to have a consultant come along, and the matron wasn’t appointed ... So there was Ownership this leadership vacuum in the nursing team which was a huge challenge because you had a team of nurses who were feeling insecure, who were having to deliver a very challenging service, who were dealing with hearing a lot of prejudice that was being surfaced from the acute team and they were lacking a leader. (Referrer 5)

Concerns I think it did have the potential to be really very innovative and I think it's got stuck behind guidelines and committee and people selling themselves, Ownership and actually forgetting about the service which would be for the nurses, Scope really, to be leading the service, for the nurses to be actually running the service, for the nurses to be wanting the evaluation, and the nurses to become the consultants themselves. And I don't feel that that's happened and I feel things I particularly wanted, which as I said, was ultraviolet lights, breastfeeding advice and they'd discuss cheap feeding at home, oxygen at home for bronchiolitis. (Referrer 7)

Concerns It's too little too late. We don't need protocols. We don't need… There's so much time and effort investment in red tape and it, I just, I can't bear it. I just can't bear it. (Referrer 7)

Concerns It isn't that difficult and we have, you know… Why has it taken a year to set up anything that's more than community nursing? That would be my question to you. (Referrer 7)

Concerns We’ve made it very complicated, unnecessarily complicated. (Referrer 7)

Concerns Actually there are some times you think you’re sending somebody home and that must be better, but in fact home is actually pretty dire. (Referrer 10)

Defences sites And the other difficulties or differences will be whether we treat our patients in any way very differently or not, and it’s a very... it’s not a very clear distinction of the need sometimes to us, though, despite how hard you want to set those criteria. The need for hospital at home involvement to different people may still constitute quite a different level or a genuine justification. (Referrer 1)

Definitions and I know these are terminologies. We need to be a bit careful, so. I say terminology admission, so. We are not discharging them, but we are actually admitting them to a different environment. (Referrer 1)

Theme What they said

Definitions and The additional benefits, so, if we were not worried enough for this child to terminology be admitted to a hospital where are the... where is this hospital at home necessarily coming to? So I’m not entirely sure still. (Referrer 1) Eligibility

Definitions and [Interviewer]… do you think the distinction between the hospital at home terminology Service and the community nursing service…?

Scope [Interviewee] Yes, yes, definitely.

Communication …Yes, no I think we seemed to be doing well. … Patients we think are going to go home then take a turn and end up staying. But I think we communicate quite well to say that they’re going to be with us for one more night, or like the extension is not needed on discharge just yet. So I think we’re quite good at that hopefully. (Referrer 2)

Definitions and We spent a lot of time identifying the key stakeholders, establishing that terminology there was absolutely no unified idea of what hospital at home is, a lot of fear, a lot of apprehension, a lot of barriers. So we spent a lot of time Concerns: gaining an understanding of what people perceived the risks to be and communication identifying a need to bring the key stakeholders together in a shared vision. (Referrer 5)

Definitions and I mean, let’s face it, a good clinical nurse specialist who’s been a nurse, a terminology paediatric nurse, for five-plus years, shall we say, will be better than an SHO that’s starting up, better than a paediatric senior house officer who’s Scope starting off, and I think as long as the... as long as the limitations are clear, I think that’s a really key point: at what point care at home should be referred to care in hospital and vice versa?

As long as that’s clear... you know, if there could be, like, another tranche of doctors... I know they’re nurses, but working like doctors, then that would be great, because at the moment casualty’s, sort of, overwhelmed a lot of the time, often by cases that could be seen by a good GP or would be completely adequately assessed by a paediatric nurse with some experience in history and examination and so forth. (Referrer 8)

Definitions and I think it’s developed. I mean, it’s become a service. I don’t think it’s terminology hospital at home, I don’t think it’s a hospital, I don’t think he can have a hospital at home. So, yes. You can have increased care at home, but, I mean, I suppose it’s just in the name, but there’s a lot in the name. So, I suppose, to develop into being a hospital at home, I think that’s an impossibility. (Referrer 9)

Definitions and I view it as, I view it as, probably, sort of, high-level community nursing, terminology really. That’s just what it is. Providing, taking care of children that’s slightly

Theme What they said

Communication more sick, but… and that need, and providing longer hours of care, and with better communication between hospital and home. So, it’s an advanced Referrals community nursing service basically. Ownership [Interviewer] Have you referred any children into the service?

[Interviewee] Yes, lots. (Referrer 9)

Definitions and But I don’t think you can call it hospital at home. You know, because a terminology hospital requires infrastructure. It requires stuff to be there when stuff goes wrong. And it requires a doctor input. And, so it’s a nursing service Scope essentially. (Referrer 9)

Definitions and I think that’s probably been one of its problems as well that it’s created. terminology … But if you didn’t call it hospital at home, what would you call it? Like, Evaluation advanced nurse practitioners, I don’t know. I think it’s mixed, I think it all depends… My view on it would be very coloured by the numbers, by the Scope money attached to the numbers. And if, but also, of the cases that have been referred into it, do they really need hospital at home or could they afford community nursing? And I don’t know the answer to those questions. (Referrer 9)

Definitions and If I’m honest, I think the way it’s working now is just an extension of the terminology Children’s Community Nursing Service, in my honest opinion. (Referrer 14)

Definitions and When it was first mentioned to me, it had very nebulous terms so people terminology kept talking about hospital and without really clarifying what that meant in terms of the absolute concrete patient groups that would go into it. So I think there’s definitely been a significant leap in terms of clarifying what type of patients are suitable for going into the service and that was, I think, very early on. (Referrer 15)

Definitions and I’m not entirely sure we’ve still got a really good tight definition in the terminology service and part of the problem is I’m not sure if it’s the service that will ever be amenable to type definition. (Referrer 15)

Definitions and So you can talk about enhanced community nursing care but that’s really terminology understanding the service but at the same time it’s not a home – it’s not exactly come round to having home medical service, so I think there is still some slight ambiguity in the system. (Referrer 15)

Definitions and This is a new, evolving service and we don’t have the right, easy, snappy terminology phrases that we can hang it on the same space. Everybody knows what an inpatient ward is, everybody knows what an outpatient clinic is. We don’t

Theme What they said

yet have that sort of instinctive feel for what a hospital at home service is so I still struggle to describe it accurately. (Referrer 15)

Definitions and I’m not suggesting that there’s an obvious terminology. (Referrer 15) terminology

Differences sites I think they need to change... almost change the amount of children that we see in it, so.... so I think the difference between the UCLH and the Evaluation Whittington, they’re quite clear, but their feeling is... and, actually, this is something that needs to be evaluated, is that the children that we put into hospital at home they send home. And, actually, that may... they may be wrong or they may be right. That’s really important that we find that out. (Referrer 12)

Differences sites Firstly, I think the Whittington and us, the catchment area, is very different, so. I think, Whittington, certainly a huge... a much better... a much bigger majority of your patients are from Islington and we are 50:50, roughly. (Referrer 1)

Differences sites I’m sure it has been mentioned on a number of occasions, is the hospital at home team very much are based, partly anyway, at the Whittington site. Is Ownership that true?

… But there is a location within the... there is an office that they can use or something like that. And also the IT system is very much shared with the Whittington rather than for us. Those are not reasons for differences, but they are perhaps factors which sometimes make the [unclear 00:07:50]... the study more... less straightforward, really. (Referrer 1)

Differences sites I think the referral figures reflect the number of patients who clinically, for whom there is a clinical, real, true clinical eligibility for this service. You can Scope always say, well they’d benefit from an extra review by a nurse, but that Eligibility would apply to virtually every patient ever seen. But, and I think that might be partly why there’s differences in the referral figures. [between the two hospital sites] (Referrer 4)

Differences sites But I think the threshold for referral is probably different, and I think the Whittington… referring children to hospital at home, whom we don’t think Referrals need the services of hospital at home because we feel they’re perfectly safe, with the safety net of their parents looking after them. (Referrer 4)

Theme What they said

Differences sites For those who perhaps we at UCLH aren’t referring in and the Whittington might be referring in, where I think the service is providing an extra degree Referrals of safety netting, I think, talking to my colleagues here, we feel that that’s not necessary and families and parents are perfectly capable of it, and there might be a tiny number where you feel the family and the parents aren’t capable of it, where we’d have otherwise kept them in, where the nurses might be able to do that, but I think that’s probably very few in reality. (Referrer 4)

Differences sites The assumption is they’re [UCLH] keeping children... in their ward that we [The Whittington] are seeing in hospital at home. That’s just an assumption Evaluation and...you know, we’re going to have to look at that just to see that it’s actually a credible service... a cost-effective service. (Referrer 12)

Eligibility It’s not just the patient’s address, but it’s actually the GP’s address and, again, I think that has more to do with the funding, but they’re actually Referrals creates another level, to me, almost unnecessary complication, rather than where the patients live, but where they are registered with their GP. That is only a minor point. (Referrer 1)

Eligibility We refer some patients to you from the ward, but the number of patients I think we refer from A&E to you must be exceedingly few. That’s my Referrals impression, anyway. I do not know why. (Referrer 1)

Eligibility There are some... many of them are circular discussion and argument, so. What can the hospital at home team do, really? Because at the moment

they still cannot deliver home oxygen, I believe, so that takes away a large Scope number of... or, well, not large, but certainly a number of children that we would have admitted to the hospital at home from the ward, so. Many... a few cases of bronchiolitis or young babies needing their oxygen but doing well, nothing else to be done, if the hospital at home will take these people or children in oxygen I think that will increase the number quite significantly. (Referrer 1)

Eligibility ... if their GP is registered in Islington, if the child was admitted requiring intravenous antibiotics, within 24... 48 hours they are well enough. They Referrals often will be discharged somewhere from the... transferred outside of the hospital. You have a few options. In the past we could make use of the Community Nurses. They would go in a home to give antibiotics, for Terminology and example. definitions Now if the GP is registered in Islington we’d probably refer to hospital at home. What’s the difference? I think we’re led to believe that hospital at home can provide a slightly higher level of medical care to these babies or children and not just a procedure-orientated... i.e. administration for

Theme What they said

antibiotics. They can provide another level of reviewing the patients in terms of their wellbeing, their observations and their progress and provide, like, a... some sort of medical care. Again, that is really quite... not straightforward, in my view, so. I think the distinction between Community Nurses previously and the hospital at home is still an interesting area of discussion. (Referrer 1)

Eligibility [Interviewer] Do you think that works quite well in terms of who you know, or are you thinking oh we could refer this person, but then you’re going and Referrals having to check? Scope [Interviewee] Yes, I’d say we’re still having to check still.

…But I think it’s just probably because we take such a variety of patients and we take in a lot of transfers, so a lot of them aren’t within the kind of local borough. (Referrer 3)

Eligibility I don't request hospital at home to go and check on them if they have gastroenteritis or if they've got, of if they are sort of weaning from asthma Scope because I would hope that I would have given the family enough Different sites information, and checked the technique and given them enough information so that they would then get in touch with the attending team if there was a problem, rather than, you know, rather than discharge them and happily get another person to go and re-assess them. And I don't know whether that is something that the Whittington does more. (Referrer 3)

Eligibility I think the interesting thing will be if they then end up coming back or whether there is something that the education is better in those patients, Scope but I would like to think that, you know, for the young people with asthma, that they get a good assessment and input from the appropriate nurses, and sort of...

Because if they don't need oxygen, and the time that you worry about them is the overnight, where actually I would, you know if I was stretching them, I wouldn't send them home to stretch them overnight, because the nurses won't be able to go visit them overnight and because that is when they tend to get worse. So if I will be sending them home, I'll be sending them home in the morning, by which time they've had all day to stretch. But with a clear plan. (Referrer 3)

Eligibility But we don't have the physical space to have a PAU unfortunately. Or an observation, or a day ward, or whatever... we have a day unit, a day kids unit but that is mostly for planned things such as surgery, scans and food challenges and transfusions and infusions. But in terms of the sick kids, you know, it's what we can deal with in the Emergency Department. And I think you know sometimes, sometimes, we don't know which way things are

Theme What they said

going to go, its… We could, I guess, refer to hospital at home and get them to go and check in a couple of hours and so on. (Referrer 3)

Eligibility I did that in the past with community nursing and I have to say it didn't succeed because I would send them over and then I would get the call back saying actually we can't go after all, and then you are like, oh no. So I think with hospital at home that would be different. (Referrer 3)

Eligibility Gastroenteritis, again if the child has got diarrhoea or is vomiting and if you are challenging them at home. Again, you know, with a sensible parent and Scope advice do they need a nurse? I don't know. It is a luxury. Would be nice, but I don't know that it adds value. I don't know whether it adds value in terms of preventing them coming back, because often once you have sort of challenged them in the hospital and sent them on their way with a leaflet what to do again, they rarely come back. (Referrer 3)

Eligibility We’re less ambitious with something like the jaundice pathway; don’t rush it until you’ve got all those people in a room agreeing to the pathway. Ownership (Referrer 5)

Eligibility We would have a very limited scope of six key presenting complaints, and [named individual] helped define those. It wasn’t an ICD ten diagnosis. It Scope was what a child presents with. So breathing difficulties, diarrhoea and vomiting, infected skin rash, neo-nate… newborn with feeding difficulties, and wheeze. (Referrer 5)

Eligibility So we, sort of, had this six presenting symptoms and then we had a, kind of, inclusion/exclusion criteria based on evidence-based guidelines. … We used existing guidelines. (Referrer 5)

Eligibility What actually happened when you look at the working diagnoses of the child, it is much, much broader. So, in fact, we’ve had children with sub- Scope acute bacterial endocarditis, sickle cell patients with acute pain, oh, yes, the Referrals surgical patients were always there; burns, post-surgical abdominal operations. We’ve had a much broader range of working diagnoses than we ever imagined. (Referrer 5)

Eligibility I feel very strongly that we should not be offering a different service to different patients and it was taking up so much time on the ward round. There's actually now an extra column with which borough people live in, so we stopped wasting time looking up where people live on the ward round and offering them hospital at home when we can't and that was just another, sort of, layer of red tape irritability, you know, irritability on the part of everyone. (Referrer 7)

Theme What they said

Eligibility Well, I think the biggest challenge would be trying to decide at what point the child should be referred to hospital or, from the nurse’s point of view, Scope from the hospital at home nurse’s point of view and from the doctor’s point of view, at what point the patient was safe enough to be referred to the hospital at home service. I think it’s the grey cases that are difficult ones, you know, that... you know, the ones that have lost quite a bit of weight and maybe need nasogastric feeding. I understand that they’re going to introduce phototherapy at home. I don’t know... do you know if that’s happened yet? (Referrer 8)

Eligibility I’m familiar with protocols because a lot of them are on our hospital intranet, and I imagine that a lot of hospital at home ones are various... are very similar or, you know, some parts are completely identical with one or two little extensions here and there. (Referrer 8)

Eligibility So, has it lessened days of hospital stay? Maybe. Although it’s really hard to disentangle whether you send people to hospital at home just to, sort of, appease your own anxiety, and if hospital at home wasn’t there, would you just send them home? (Referrer 9)

Eligibility But I do think we have to just be aware that when there’s diagnostic uncertainty and we’re dealing with something that’s a little bit unusual, rare, we shouldn’t be necessarily trying to push that out into hospital at home because we might be exposing the nurses and the family and most particularly the child to a risk that we can’t... that we can’t really quantify properly. (Referrer 10)

Eligibility The only slight confusion we have is that knowing who’s eligible and it’s only recently was that it’s to do with where the GP is rather than where the family lives. (Referrer 11)

Eligibility I think the big issue we have is we sort of realise that patients aren’t eligible because they don’t live in the right area. So that’s the main thing in terms Scope of the number of patients you can put into it is limited because of where they live. (Referrer 11)

Eligibility I think it’s a good idea, I think it’s useful, but then practical things, one we sort of mentioned about easily knowing who’s eligible in terms of where they live. But I think it’s useful, I think it’s good. (Referrer 11)

Eligibility I think it depends on each consultant whether they think, this child is appropriate for hospital at home or not. I think, you know, some of the nursing staff may think this child could go to hospital at home, whereas the doctors may not, or it could be the other way around. (Referrer 13)

100

Theme What they said

Eligibility I think in terms of once they’ve got to A&E we either know that they’re going to be well enough to go home or whether they’re going to... Or Referrals whether they’re going to stay... and sometimes hospital at home doesn’t Scope quite fit in with that because they’re either sick enough to warrant admission or a longer period of observation or, actually, they’re Primary Care that we’re just going to turn around and send home. And, you know, sometimes things like gastroenteritis, diarrhoea and vomiting or... again, like I say, although it’s part of the hospital at home thing that they will see, actually, if you give the parents adequate advice and safety netting prior to they leave then, you know, are we giving hospital at home something to do again just because rather there actually being a need? (Referrer 14)

Eligibility At the moment from an A&E point of view we’re struggling to get the correct conditions and the correct criteria for them to make an impact on... Scope from an ED perspective. I think when you’re talking about early discharge from the ward and you’ve had a bit of time then... but in terms of A&E there’s... I don’t think they’ve got... (Referrer 14)

Eligibility Often from ED it’s a case of they’re either fit enough to go home and we’ll get them in and out within four hours and they don’t need anything other than some safety netting or they need longer observation which involves CAU [? 00:11:35], and I think maybe CAU is where we could turn them around. (Referrer 14)

Eligibility I think we’ve definitely made an evolution in terms of clarifying which patient groups are suitable and also, at the same time, which groups aren’t suitable. (Referrer 15)

Eligibility There’s lots of things where we have to sit down and think, right, which local authority do you live in, who do we refer to for what, and on a practical basis, I think we have far more problems with Barnet for the few patients we have living there, where the services are much scantier altogether, than we ever do with Haringey by comparison to Islington. Yes, it would be nice if they have the same service but such is life. (Referrer 15)

Eligibility Yes. So, kind of, administering… So, basically, children who need medications or IV medications administering, but they need more than that. Referrals So they also need a clinical review. Really good for wheezing children. So, children who we can get stretched to three hourly we can send home with hospital at home to review and stretch further. Babies with feeding [difficulties]. So, establishing breast-feeds, if they’ve got a tube, NG tube in, or if they need breast-feeding support.

We refer a whole range, so, just… Also, kind of, sometimes, it can be for parental anxiety, just to have that extra safety-net.

101

Theme What they said

…we’ve had this week of, you know, monitoring rashes …[the] hospital at home nurses are monitoring spreading of the rash. (Referrer 16)

Evaluation But some of that might be more to provide reassurance and safety for the families rather than genuinely reducing the number of admissions necessary. The earlier discharged is probably slightly easier to demonstrate, but even for that beyond intravenous antibiotics what other things can you measure? Again, it’s difficult for me to know. I think, gastroenteritis, they can be allowed home earlier. If they are not on tube feeding it’s very difficult to demonstrate. I think... yes, so, I’m not sure how you can measure that, actually. Do you? (Referrer 1)

Evaluation So, is it cost-effective? Is it viable, is it cost-effective? Are the referrals really, that have gone into… I know it’s hard sending out [unclear 00:07:45] Scope 25 referrals, mostly from us. Do they need to have gone to hospital at home? Could they not have been…? I don’t know the answer to these questions, but that would be my question to ask. Is there, you know, are there any children that didn’t need this slightly advanced service, or could they’ve been managed by the community nurses? (Referrer 9)

Evaluation Ambulatory care is not a subspecialty, it’s a way of thinking, and it isn’t necessarily cheaper but it should be better, and you can, sort of... high quality care ultimately is more economical because you do the right thing at the right time at the right place, rather than duplication, so, I mean, you can, I think, but it starts off as seeming more resource heavy than people... and people get cold feet and trim away...

… I mean, ambulatory care per se has been a very difficult thing to compare to standard care. (Referrer 10)

Evaluation It may just be because it’s a new service. It’s getting going. …all the systems have had to... all the processes have had to be sorted out and the, kind of, the governance and that’s taken quite a while. I almost think that’s what needs to be shown... because everything takes much longer than you expect it to, so. The hope is that we can really clearly show that we can reduce bed numbers in order... for hospital at home... I don’t think we can show that yet? (Referrer 12)

Evaluation I think there are…I think that is... I think the main challenge is that we... you need to compare like with like? … because otherwise we’re not going to be able to show that this is a worthwhile service. You’re going to have to say, okay, these babies in hospital with... from Haringey or whatever, not... are in with bronchiolitis, but we have the same children in Islington at home with bronchiolitis. You can’t... you know, you have to be comparing like with like and currently you’re not doing that… I think you... yes. I think you’re...

102

Theme What they said

it’s going to be a lot more discussion, actually, because I... the only way you’re going to overcome this UCH thinking, you know, what is the service other than Extended Nursing, is by really showing them that it’s something different, if it is something different. (Referrer 12)

Evaluation I give my comments in a way to drive it forward, not to, you know... (Referrer 14)

Evaluation Some of the patients have come into hospital at home, some have come from the admitted group but some of them have come from the group that Scope were just discharged for their own incognisance and I don’t know how you even begin to try and weed out where most of the activity that the hospital is generating comes from and of course that’s important in terms of maximising the usage of the service because we want the service to succeed and if you want it to succeed, you have to prove it’s cost effective and the best way of proving it’s cost effective is proving it has actually had an impact on admissions, you know.

While it’s all very nice for parents to be able to have extra reassurance at home from a hospital at home nurse, if it’s not really making any difference to the outcome, then is that a cost effective use of limited NHS resources, and that’s why I go back to saying maybe there’s a group of patients with chronic conditions like the asthmas, where perhaps we’re better targeting them and stopping them coming to the emergency department in the first place. (Referrer 15)

Evaluation Defending its financial viability, I think is the biggest one. I mean, I think the reality is that the NHS generally is under huge pressure. (Referrer 15)

Improvements So I think when [named individual] came along as matron, that was very important because she’s been a superb lead in steering these nurses through a very challenging change. So leadership has been really important. (Referrer 5)

Improvements Very adaptive. So we said the whole service has got to be iterative. So the point of these two-weekly meetings is every two weeks, what’s going well, Communication what’s going badly, what do we need to change? (Referrer 5)

Improvements We designed an IT platform, referral forms, a whole pathway from referral to discharge based on the existing IT platforms. And the reality was, because of various unpredictable events, the nurses were spending two hours on admin. So we met again, and that’s what I was saying to you, we met with the IT designer, the pharmacist, the data manager, frontline nurse, matron, and myself. We redesigned the whole platform from beginning to end and we got it down to 20 minutes.

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So we turned it upside down, scrapped things, abandoned iPads, so that the frontline users were directly designing a user friendly platform. (Referrer 5)

Improvements one thing [named individual] very cleverly project managed was if you finished very late, you didn’t start a shift at eight in the morning because you had the travel time, and nurses were coming back and doing quite a lot of admin to hand over. So that kind of thing, agreeing on the safe times for them to finish, originally they wanted nurses to work until midnight. That just wasn’t feasible. (Referrer 5)

Also, these nurses are not just doing hospital at home. They’re doing their standard community nursing service and the nurses in primary care. So [named individual] has had a complicated time delegating how you use the resources effectively which has been quite challenging. (Referrer 5)

Improvements So we’re tried to learn from all the patients who re-refer. So we’ve looked, we’ve got a spread list of all the patients who end up back in hospital to try and learn was there anything we could have done differently to avoid that family coming back. So, for example, there was a couple of bronchiolitics, not on oxygen but who were quite young, under six weeks, who went home, then quite soon returned to hospital. So we’ve, sort of, changed the scope so that children under six weeks with bronchioltis who are more vulnerable don’t go into hospital at home.

Older bronchiolitics, you might have a child aged 12 weeks who you know is going to deteriorate but at least for two days they can be at home before they need to come into hospital being monitored. So instead of being in hospital for, kind of, five days, they’re in hospital for two days, and three days are spent at home.

So sometimes it’s a mix. Sometimes it’s positive that, okay, the child comes back into hospital but at least we save them a few days. Or an abdominal… a lot of the re-admissions are surgical abdominal complications. (Referrer 5)

Improvements I just don't think the service has been maximised in a way that I feel it should've been. (Referrer 7)

Improvements I, kind of, don’t want to knock the Service, but I see it working, actually, the opposite way to how it does. I would see it as if you had the right skilled Nurses you would be stopping the children coming to A and E by reviewing them from a GP referral rather than the other way round. (Referrer 14)

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IT I’m the IT person, so I was involved from the beginning to discuss, basically to understand what was required in terms of this new service, and then try and work out how... which best sys... which... to support people in doing what they needed to do. (IT developer)

IT There’s kind of a referral to the service. And that was relatively easy, in terms of what we use internally, because we’ve got this slip that people use for referrals, so we could sort that out. But the difficulty was not on referral, so, from an IT point of view, not from a patient perspective. Not all referrals are done internally, obviously, some come to us from UCH [sic] and, I don’t think do yet but certainly will, if not yet, GPs. (IT developer)

IT And obviously, they don’t have access to that same system, and even if they did, the patient may not be known to us. They wouldn’t exist on that system. So we kind of had to put in place two routes of referral, which isn’t ideal. (IT developer)

IT Because it was UCH GPs, we couldn’t have it on our intranet, because obviously it’s not a public website. (IT developer)

IT The people receiving the referrals, they’ve got to look at two places. But it was the best that we could do given the way the service works. And then we all said, well, okay, how are we going to record the activity against the patient?

And that’s really tricky, and it’s all these things because the NHS data model is, you know, you’re an outpatient or an inpatient, you’re in ED. And that, as we’re moving to, we’re moving to more, kind of areas of care that’s sort of hybrid, you know, not strictly outpatient, not strictly inpatient. (IT developer)

IT They use a different system to record what they do with a patient when they go in the home. Obviously you’ve got the admission going on one system, the nurse activity on another, so there is a bit of duplication. (IT developer)

IT We realized that’s not going to work. So we stopped admitting them on the one system and just have them put on Rio.

… there was a lot of admin overhead to start with, because the problem is, we don’t have one system, you know. (IT developer)

IT Initially, we were using Medway, but they were using Rio as well. So we were using lots, so, three systems. So now they use ICE for the referral and then they use Rio. (IT developer)

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IT It’s as good as it can be with the lim... You know, with the way the software works. (IT developer)

IT There’s no one system. And also, you know, kind of, the care doesn’t fit the standard model, you know. (IT developer)

IT I don’t know the process at UCH. (IT developer)

IT I think we all hoped Medway would be used.

… but they also, understandably, wanted to record how much time they’re spending with each patient, and, sort of, some notes. Which you couldn’t do if you were... it if was an admission, you couldn’t do that, whereas Rio supported that.

… we agreed to scrap Medway, it wasn’t really serving any purpose, and just use Rio. I mean, obviously they look at referrals on ICE. (IT developer)

IT the form that’s on the extranet could be used by GPs, because it can be accessed by GPs. (IT developer)

IT That’s the problem, and that’s because when we first launched the service Rio was going to be phased out and replaced with Medway, the hospital IT service. So we designed everything for hospital at home on Medway. Then the decision got changed ad Rio was going to stay. (Referrer 5)

IT That has not been as meaningful as one would hope because I don’t understand the diagnostic codes on Rio, basically, to be completely Evaluation arbitrary. And that has been a big problem in a lot of the evaluation, is the Rio codes. (Referrer 5)

Ownership [Named individual’s] always had and something I know that she believes in, you know, I think we all share is the importance of co-production, involving Scope all the stakeholders in the design and not just in delivering something. (Referrer 4)

Ownership And I think it was quite a challenging role to take on because, actually, the community nurses, which is our strength, are a team of nurses who were Definitions and established by a nurse, who have been nurse led since the 1980s, and they terminology felt quite threatened about why this consultant lead came along into this new hospital at home service. Why couldn’t they continue being nurse led? And there was a lot of discrepancy about the language. (Referrer 5)

Ownership So engaging UCH to have a sense of ownership for a service was another huge challenge because this was a Whittington health service that they Differences sites were being asked to refer into for their Islington patients. (Referrer 5)

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Ownership As challenging as it’s been, it’s been incredibly exciting. So they ended up co-designing the scope, co-designing the pathways, with the community Communication nurses. It’s all been about relationships. (Referrer 5)

Ownership What I’ve learned is don’t launch something until you’ve got engagement and buy-in from the key people because if something goes wrong. (Referrer 5)

Ownership It should be nurse led. This is about community nursing with support from doctors. We're not going into the homes. hospital at home was never set up for doctors to be going into patients' homes. (Referrer 7)

Ownership I don't think this is a medical model. This is a nursing model. (Referrer 7)

Ownership Does it need to be consultant-led? Does it? Not really sure that’s actually true. There’s no doctor in poise running, it’s a doctor running a nursing service. Yes. (Referrer 9)

Pharmacy [Interviewer] So when did you first find out about the service?

[Interviewee] About 18 months ago. (Pharmacist 1)

Pharmacy I was involved in the very early stages so that at the time we got involved and realised what we were asked to do, there was no funding set aside or discussed for extra pharmacy support, but as soon as the hospital was involved and... you know, we were involved, yes. (Pharmacist 1)

Pharmacy I worked closely with the matron... mainly with the matron on this ward who was responsible for all the children’s nursing services. (Pharmacist 1)

Pharmacy She kindly set aside some funding so they could have a dedicated pharmacist to look after it. We no longer have a dedicated pharmacist, that she just gave it out of her nursing funding, so now it’s just the stock being managed by a technician. (Pharmacist 1)

Pharmacy I meet with the matron of community children’s nurses once a month and it’s quite good because it’s nice to have this regular meeting base anyway because it helps to integrate between our community and our acute services, and we do discuss other issues, and the nursing team bring their concerns, problems, complaints, whatever to her and then she brings it to us once a month. So the complaints are very constructive, they’re not, like, subjective and destructive, I suppose. (Pharmacist 1)

Pharmacy ... it’s knowing whether they need a TTA pack, it’s knowing how to dispense it. One of the bumps was actually the financing, because we were told they were going to be inpatients, and then the finance department... so the financing works if they’re discharged. So now they’re being treated like

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outpatients. The main bumps we have are that the nurses are having to take children without having a full understanding of the medications their dealing with. (Pharmacist 1)

Pharmacy the thing that concerns me was children were sent home with medicines that cause extravasation [? 00:03:32] with no extravasation guidance for them, and so we’re trying to sort that out, but it seems to be a bit... we’re doing things retrospectively because they weren’t meant to be sending children home with medicines that extravate. And I feel they don’t get... they could do with more support, honestly; support for that. (Pharmacist 1)

Pharmacy It’s training but also it’s just knowing where you stand, what... you know, just having a guideline. I mean, they do know about extravasation, but at the end of the day, they’re in a parent’s home and they don’t have access to everything that an acute [? 00:04:14] trust will have, and so there are... I think I feel they’re a bit isolated from the support you get when you’re inside a trust, and the guidelines don’t... aren’t community guidelines or hospital at home guidelines, they’re, like, generic guidelines for acute medicine. (Pharmacist 1)

Pharmacy So [named nurse] [named individual] and I are looking into setting that up, and I think I’ve got more of an awareness when they do any guidelines, to get the community team involved and say, how practical is this for you, so I think that’s something that wasn’t anticipated. It’s hard to think everything through. Some things you have to learn as you go along. The other thing is they... about inhalers, you know, they... some children use [unclear 00:05:02] inhalers and are not getting discharged on it, and they said, we really need it as stock and... so we looked at that, and we decided we’d trial it and put six in stock. If they’re not used, then we’ll just take it out of stock.

So there are little things like that, and actually they are used and we’ve increased the stock level. What we’re doing with their stock is what we do on the wards, is every three months we review it so they don’t hold too much stock, so their stock is adjusted seasonally, too, so we’re not sitting there with 200 Salmeterol ? 00:05:34] inhalers in the middle of the summer, and then likewise when winter starts they haven’t got just five, which is what we do to the ward: we tailor the stock and move it and change the levels just to help... just be more cost-effective. (Pharmacist 1)

Pharmacy My concern is there is no pharmacist dedicated to hospital at home, and if the service really did take off, I feel they would need a dedicated pharmacist to ensure it runs smoothly. Fortunately, we haven’t got the numbers, that if somebody goes to hospital at home, we tend to know, and we’ve got a very

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Theme What they said

experienced technician looking after it, but we’re not giving the medicines [? 00:06:36] input and advice that we should do supporting these patients.

The other concern I have is because they don’t have electronic prescribing, we can’t see the drug charts, so actually as pharmacists we’re doing very little, because... and that there is a risk to the patients because we’re not double-screening it, we’re doing that here, but because we can’t see the drug charts, we can’t see the changes in the drug charts, where if we had electronic prescribing and good Wi-Fi, we could look at every patient. So it really needs improving, Wi-Fi, we really could do with being electronic prescribing and having a dedicated pharmacist. (Pharmacist 1)

Pharmacy And luckily we’re going to label the bottle with directions, but I can’t see the drug chart. We’ve verbally told the doctor, we’ve changed... he’s changed the prescription, but I don’t know if the drug chart’s changed. (Pharmacist 1)

Pharmacy They have to make sure they’re stocked for late at night. We are open seven days in the pharmacy, so we need to be more robust there, in fact that people understand how hospital at work...... but if it’s late at night, if they start someone late at night, then they have a problem. That’s why they have the stock. (Pharmacist 1)

Pharmacy Yes. I mean, if somebody’s discharged really late at night, which is unusual that someone would do that at eight o’clock, if somebody had to be discharged at eight o’clock and they’re running till ten, and they’re on a medication that’s not in their stock, then they’ll have to call the on-call pharmacist to supply it, which fortunately we haven’t had to do. (Pharmacist 1)

Pharmacy The capacity’s there at the moment. Also, the conditions that patients are being charged... discharged to hospital at home are stable conditions, and that’s covered by most of our antibiotics... (Pharmacist 1)

Pharmacy My concern is if they’re on something new and the nurses aren’t familiar with it, because I always find if you use something you don’t regularly use, then you’re more likely to make an error, so that’s my concern. (Pharmacist 1)

Pharmacy And so what we do is we print off and give a lot of support. (Pharmacist 1)

Pharmacy I think it... for the service we’re providing at the moment, the level of service, it’s good. I think [named nurse] and I are happy with that. She meets with me and she meets with a technician who’s responsible for the service once a month. I think if we felt we needed to meet more often, then we would do so, but it’s definitely increased my awareness of community

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Theme What they said

nursing and the limitations they had, an idea of the surroundings they’re in. (Pharmacist 1)

Pharmacy I don’t think you need a full-time pharmacist dedicated. I think what would be really useful is to have a very experienced pharmacist, because rather than the actual physical dispensing, what the nurses are relying most heavily on is advice, so I’m talking about someone that is a very senior, experienced paediatric pharmacist, and not the full time but part of the time would provide, I think, a safer service for the patients than us who, if I’m not around, then you may get someone very junior who might know and say, well, I’ll go to MI [? 00:13:37] and I’ll... medicines [? 00:13:38] information, and I’ll come back to you, and they say, I need it now.

And sometimes the information they want is quite complex, so they might have a four-times-daily antibiotic and they say, how can we fit this in the hours of eight to eight? So that means a deep understanding of pharmacokinetics, so that you have to understand the half-life metabolism excretion in a child. You don’t always have that information there, and sometimes you’ll have to learn to interpret and extrapolate adult data, and that to me is quite a senior level. (Pharmacist 1)

Pharmacy It’s a senior skill. (Pharmacist 1)

Pharmacy you might decide, well, actually you can get an elastomer that releases it over 24 hours and maybe we’ll put that up instead, or have a... another [unclear 00:15:25] service, and all those decisions are quite senior decisions and that’s why both Joy and I felt that a part-time senior pharmacist would be more beneficial than a junior pharmacist just dispensing it, because the ward pharmacist can dispense everything they need to go home. (Pharmacist 1)

Pharmacy I’d like to give that role to somebody senior to look after. We have another senior pharmacist who’s part-time, and it would be quite good to increase her hours, rather than employ somebody else, so we’re not talking about...

[Interviewer] Putting in somebody brand-new.

[Interviewee] Vast sums of money and a whole... a 0.5 or a... I think Joy and I even talk about adding 0.3, so change her role from 0.5 to 0.8 and give her this extra responsibility. But anyway, let’s see what happens. At the moment, touch wood, I can answer most of their enquiries, and a lot of it is stock and we supply it as stock, but as I said... and until we can see drug charts, it’s really hard to monitor the patients. We’re not doing any patient monitoring safety, medicines reconciliation. (Pharmacist 1)

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Theme What they said

Referrals [Interviewer] Yes. Have you referred any patients into the Service?

[Interviewee] I haven’t, not directly, myself, but I say, well, mainly from that ward. If I’m attending then I will say, well, this child could be continued... transferred to the care of hospital at home.

Because most of that subsequent process is done by the members of the Team rather than myself, though I’m aware of the process. I mean, it’s completing a form. Is it by email still on that website? And then bring a home... a mobile number. Just make sure that they can accept [unclear 00:11:03], so. I’m aware, but I’ve not actually, personally, made that process of referral directly myself. Yes. (Referrer 1)

Referrals we just say whether we are compliant with that is at the handover we also highlight which patients are under hospital at home. We might not be Communication able... we might not have been doing that diligently. I think we’re supposed to do that…

... but I think we did recommend and say that at the handover we should remind ourselves to say, have we got any patients under the care of hospital at home. (Referrer 1)

Referrals Yes, I think it works really well, I think it’s more just tweaking the communication our end with the doctors and ourselves because sometimes we’re happy to do it and we do the online referrals, and the doctors will want to speak to the team and they just forget that bit, so it’s just making sure that the phone call and the referral have both been done.

[Interviewer] Right, and in terms of, sort of, filling it out on screen and doing the actual referral itself, does it work quite well?

[Interviewee] Yes very self-explanatory. I’ve had junior staff do it and complete it absolutely fine, and I’ve never heard any complaints or not sure about anything on it. (Referrer 2)

Referrals you don’t have a minute to think on those attending, you just, sort of, then have to go, tut, oh, how do I refer to this service that I don’t really understand and I’m not sure if they’re going to be safe, and, actually, if I just keep the child here, they’re safer. And I know they’re safe and I’m not… it’s not lack of caring, it’s your head just doesn’t have the space to think differently. (Referrer 5)

Referrals I positively do not refer to hospital at home because I do not want to make more work for myself. (Referrer 7)

Referrals And the paperwork, to fill it in and how it's set up, is actually quite onerous and actually I prefer, I would just refer… So if you can do a referral to the

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Theme What they said

community children's nursing or hospital at home, I will almost advertently go down to community children's nursing unless I'm hamstruck. (Referrer 7)

Referrals [the referral process] Yes, sometimes it’s a bit of faff finding the phone number to call, but that’s probably more me than hospital at home. Communication … I’ll probably ask a junior doctor to do it, that would probably be my first

call, but I might ask a nurse or I might do it myself. (Referrer 8)

Referrals Well, it’s like another phone call, so, I mean, it’s extra work but it isn’t extra work. It’s extra work in that it might involve an extra phone call over and Communication above, say, seeing patients on the ward, but it’s not extra work in that if a patient wasn’t in Hospital at Home, you might have been seeing them on the wards. So, I mean, overall, you know, I think, I mean, the net effect is that it’s a good thing, essentially. (Referrer 8)

Referrals [when deciding a potential referral to hospital at home] I think it’s quite straightforward [unclear] always been a very amenable discussion if we Communication weren’t sure, and actually I suppose it’s probably been a bit broader than what I might have imagined. So I suppose, you know, what I’ve taken away from it is it’s always worth, sort of, having a discussion if you’re not sure.

… Yes, yes, that’s been quite straightforward I think, because there’s just a phone number that we can ring, and equally actually they’ve tended to come up to the hospital most days so you can have a face to face discussion as well. (Referrer 11)

Referrals Yes, we refer quite a few children.

[Interviewer] Does the process work quite well?

[Interviewee] Yes, I think they’re a bit long-winded, but yes it does work well.

Well, it just takes a bit longer than you'd like, really it because you have to go on to Anglia ICE and then do the referral. And then it’s always… nobody's ever sure, is it the nurses that are going to do it or is it the doctors that are going to do it? I think there needs to be sort of a... you know, it needs to be a bit clearer who’s actually going to do it.

Because then sometimes it ends up that it'll either be done a couple of times, or hasn't been done at all. I think the pathway, even though the sheets are quite clear how to do it, I don't think the pathway on who is going to do it is quite clear. (Referrer 13)

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Referrals From an ED point of view we do try to give them referrals where we can. It’s just... I think it’s a little bit difficult for us at the minute in terms of we’ve got Children’s Ambulatory Unit if they need a bit more. (Referrer 14)

Referrals I’m not saying I haven’t referred anyone directly from ED but I’m struggling to remember if I have. I mean, remember we don’t have very long to make a decision.

… so from my perspective a lot of them are either well enough to go home once we’ve seen them or if they’re not well enough to go home, they’re not well enough to go home because we haven’t yet got test results, in which case, we need to move them round to our observation unit.

… So it’s not that patients don’t get referred to hospital at home on the same day, but what is more common is that they go from ED to children’s ambulatory unit and then they go to hospital at home. (Referrer 15)

Referrals Referred quite a few people into it, yes.

Awareness But it’s fine, it’s not too bad, considering it’s a referral form. And actually…the nurses are so good, and actually …the conversation on the Communication phone is the most useful thing of all. And, like, often, like, [NAME of nurse] came this morning to hand over, which is really useful, because then you just tell her in the morning all the people that are going to go out to hospital at home.

So, no, it’s not really arduous at all. And they’re very good, and they kind of phone you with updates …and they’re obviously quite experienced nurses. (The referral procedure for hospital at home is shown in Appendix 12 Procedure for referral to hospital at home). (Referrer 16)

Referrals So, certainly, some consultants are more, kind of, attuned to it than others. So some consultants have it, kind of, constantly on their radar, and very much make it a part of, like, the handover to identify babies for hospital at home. Whereas other consultants are perhaps less attuned into it naturally. So they don’t necessarily pick it up, kind of, pick up those babies as quickly. (Referrer 16)

Referrals I think, definitely, we’ve referred babies into hospital at home who are outside of that diagnostic criteria, but who we’ve spoken to the nurses Eligibility directly, and they’re happy to do them.

… I mean, obviously, within the constraints of it being, yes, not being in high-risk patients. But I think there are certain babies that otherwise just sit here, and… with that input they can get home. (Referrer 16)

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Scope And then another major difficulty is, again, about the timing and the duration of this Service. Look, there is still a gap of almost 12, I think... ten hours…

…I think what sort of condition, what sort of children and babies... if they can be left alone without any attention for ten hours, why can’t... what’s the role of the hospital at home? So if they could be left alone for ten hours that really almost means the parents can provide most of their observations and ongoing care, so you can argue, what’s the point? I mean, I think if the hospital at home is a 24 hour Service that, again, might have... they have an... might have an increasing number of takers or referrals because if by the time we say we do [unclear 00:15:14] hospital here, we’ll sent you home and somebody will come and see you in a few hours, but after that you’ll be alone for ten hours. Again, intrinsically that does not really match up very well. And if we think the child can be left alone for ten hours, what’s the point of going to hospital at home at all? (Referrer 1)

Scope But before you expand and increase, I suppose as part of your effort in doing... I’d try to demonstrate this is being delivered and helping in some ways, really. Otherwise the expansion, additional components, does not sound either not totally risk-free nor cheap. (Referrer 1)

Scope I think that there has been a lot of enthusiasm. I think from early on as a team we were, you know I think originally when I started at UCLH there was Awareness real scepticism about community paediatrics, you know community referring, discharging into the community and that, there has been a real sea [?] change and, you know, I think that the nurses, especially amongst the nurses as well, who are also very quick to highlight to the doctors, you know, this patient is appropriate for Community Care or hospital at. So I think you know ... but I don't know that from when it started it has developed into anything different.

I think that the patients who were appropriate are still the ones who are appropriate. We have not changed what we do. I think we still don't send jaundiced babies out and we still, as far as I know, don't have the opportunity to send babies in oxygen who are weaning, we have not had a proper Bronchiolitis season with it properly up and running I don't think. (Referrer 3)

Scope [Interviewer] Yes, because I was going to ask, you know, in the few cases where perhaps, you have referred, what you think would happen in those cases if hospital at home wasn't available, and it would probably be...

[Interviewee] They would probably come back to A and E, wouldn't they. (Referrer 3)

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Scope I think it's an ambitious project. And I think it's ... but I just don't, you know, I guess in my heart of hearts knowing how much effort and energy has gone into developing and I'm someone who is very, very pro ambulatory care, you know. Knowing how much energy and effort has gone into sort of developing it and maintaining it, actually, you know, I don't know, you know, I don't know how much value for money it gives us really.

So I think outside of… I think, you know, if we have a bad Bronchiolitis season and lots of children we’re slowly weaning off oxygen I think that might make a difference. And the three times a day antibiotics definitely makes a difference. But the other things, I think, I think could probably be managed in sort of, slightly extended normal community nursing hours, is my personal feeling. And we have, overall, we have better hours than a lot of our neighbouring areas already. (Referrer 3)

Scope I’m not convinced by the approach at the Whittington for children with acute wheeze, who go home when they can manage gaps of three hours Eligibility between therapy and the nurses stretch them to four, because I think most Referrals of those kids, you could probably safely stretch them to four anyway, either in hospital or the family, parents could do it at home and if they’re getting Differences sites worse, they just come back in again. Again, I think that’s a bit of a luxury and probably not necessary. (Referrer 4)

Scope So, actually we spent a lot of time looking at other models as well as then looking at the, kind of, intelligence locally because obviously ours is a very unique context in terms of Islington being a small type borough with huge socio economic variation and then the fact that we’re providing a service that needs to link two different acute hospitals. (Referrer 5)

Scope [Interviewer] So that now you’re quite happy to shift your focus over to primary care? You think you’ve, sort of, maybe established that in that Improvements role?

[Interviewee] I think that there’s more to be done with the hospital referrals, much more to be done. I think there’s more to be done with referrals from EDs so that the child doesn’t even reach the ward. But we’ve been realistic in acknowledging the challenges that we’re trying to tackle and having a, sort of staggered launch. (Referrer 5)

Scope We’ve had a realistic scope that we’re just going to focus on this for now, and then in six months we’ll do this, then in a year we’ll do this, then in 18 months we’ll do this. (Referrer 5)

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Scope And then the other huge challenge was writing the clinical governance policy for hospital at home because you would just… it was completely done over. There’s no standard protocol for a service like this. (Referrer 5)

Scope We had to cover who has ownership, clinical accountability, from when the child leaves ED to coming into hospital at home, and then the escalation of concern, 24 hours a day, changes. So, sort of, between eight and ten, it’s to the nurse. Between ten and eight, it’s to the hospital, but if you’re a UCH patient, you ring the Red. If you’re a Whittington patient, you ring the Whittington.

So all of that had to be mapped out. (Referrer 5)

Scope But all of that, before the launch, took so much negotiating.

The clinical governance policy has been written in such a way that we will eventually allow for GP referrals. It had to anticipate the changing face of the service. (Referrer 5)

Scope The advantage I see is it offers the same service as is offered in Haringey, but for longer hours. And so that's a big advantage because it works for Attitude longer, we can give more spaced out antibiotics. But actually the service that is on offer is no different from what was there before, and for me that's the tragedy. (Referrer 7)

Scope What I would like to have seen is children referred in to have ultraviolet lights and I suggested this on many occasions, and for children to have home oxygen. (Referrer 7)

Scope I don't think there's any difference apart from the hours, from what's happened to the community nursing, so the only time I would refer into it was really to help make the service make a bit of a go of it. So I was really positive at the beginning.

Scope … It has to be put into context how busy we are here and we're not busy. I can't remember the last time I transferred a child out so we can have beds, Concerns so actually… And the problem is that if hospital at home were to take off and were to take a lot of our patients, we'd really have to justify our existence. And I'm quite sure that's a subliminal message that UCLH feels as well. (Referrer 7)

Scope I think, is the babies, the bronchiolitis babies, the yellow babies and the poorly breastfeeding babies. They're the bulk of the week. Ownership …They're the key targets and I'm not sure that… Unless you have specialist services in general practice with neonatal nurses or with midwives or with breastfeeding counsellors and, you know, paed technicians to run the UV

116

Theme What they said

lights or oxygen. That for me would, you know… It could be run through, like, hospital at home. I just don't think the service at the moment has been set up like that. I don't really mind who runs the service, whether it's, you know, community nursing or whether it's the hospital or primary care, but the people who, the easiest, the audience, the target population that needs help to prevent admissions.

I think the bronchiolitis, the yellow babies and the poor feeding babies, you know, the failed breastfeeding group of babies and, you know, who are the big admissions. We've got lots of self-harming teenagers. I think that's really difficult for, you know… These are parents who've already not managed these children and their self-harming. I think that there's something very helpful for these patients, these young people, to come into hospital overnight and so I don't think… I'm not sure what hospital at home would manage to help that. (Referrer 7)

Scope And they could then move it forward at a speed that they feel comfortable with and doing things that they feel… If they feel actually, UV lights is where they want to go, then that should be the next one. If they feel that oxygen for bronchiolitis, with or without salbutamol, then that's what would work and I think that's why the model hasn't worked. (Referrer 7)

Scope I do think it's worth looking at the numbers of referrals in compared to how many patients are on the wards as well, and actually how full they are, because I think that's going to always influence things. (Referrer 7)

Scope 14 hours a day, okay, so if it could be... well, you know, probably... it’s probably a bit less than that in terms of, you know, they’re not accepted if it’s within an hour or two of their closing, or you know, if it’s probably more... a bit less than that, but if the times could be extended, that would be good.

I mean, the other thing would be if more of the nurses could have their history and paediatric history and examination qualifications and their [unclear 00:11:23] prescribing qualifications so that they essentially work in a similar way to GPs seeing children, and some of them do. I know that a couple of them for sure have their prescribing... I’m sure some of them have their history and examination but they’re probably a minority, and if that could be extended, that would be good. (Referrer 8)

Scope Yes, it could help that, avoidance of early discharge to Hospital at Home. So, you know, we haven’t got that service in Haringey, as I’m sure you Eligibility know, and there is a, sort of... it does create, sort of, a post code lottery kind of situation, in that some children are kept in an extra day or brought into hospital because we can’t send a nurse to their home because they’re

117

Theme What they said

Haringey. I mean, that would be another really good development if it could extend into, you know, Haringey because half of our patients come from Haringey. (Referrer 8)

Scope there are about half a dozen conditions which account for about 85% of admissions, and those are... those are the admissions... those are the Eligibility conditions that we need really clear protocols for, for hospital at home in terms of maybe they don’t need to come into hospital or protocols for them going home from hospital. So, you know, if those six conditions could have very, very clear protocols that would cover a lot of... a lot of admissions. (Referrer 8)

Scope the vast majority of cases are secondary to burst capillaries due to capillary... due to vomiting or coughing or viral illnesses, and only in a Eligibility minority of cases is it due to severe conditions, and if that condition could be assessed in the community, and maybe the first step’s an antibiotic given if necessary in the community, that would be a big step, so that would be something else that could be looked at. (Referrer 8)

Scope I feel pretty anxious about having a child in a community that’s got bronchiolitis in enough to require oxygen at the outset. Okay, so if it was just a discharge as opposed to lots of them sitting on oxygen, needing oxygen. I don’t know, I think it puts quite a lot of responsibility onto the parents that… And not all parents are able to take that responsibility on. (Referrer 9)

Scope It was a very organic development to make Hospital at Home in Islington, and the challenges, though, were how would you make it work, all the, sort Differences sites of, nuts and bolts things.

I mean, it was easy to, sort of, do a broad brushstroke poster but it was very difficult to actually see how you could make it work, particularly when you realised you had to make it equitable to patients who went to UCLH who lived in Islington. It couldn’t just be a Whittington Health thing, and that... and I knew from the long... for a long time that the culture of paediatric care in general paediatrics between UCLH and the Whittington were very, very different. We were always pushing and ambulating and, you know, had lots of meetings and other people came to us to see how to do it. (Referrer 10)

Scope It became very, very obvious that it was unfair that we could do all this for Islington but we couldn’t do this for Haringey patients, and as soon as, you know, this is evaluated, I hope that Haringey will follow suit and maybe everyone else will, too, because it does... (Referrer 10)

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Theme What they said

Scope it is really disappointing to... you know, really disappointing when you can’t offer somebody, some family, something that it really would make a huge Eligibility difference to their lives - complicated antibiotic regimes more than once a Benefits: family day - yes, and I think the other... the other reflection I’ve noticed is that sometimes it’s more challenging than you’d expect because the families Benefits: care aren’t necessarily straightforward, so, you know, I’m sure it’s been touched on before, but, you know, when there have been safeguarding issues, when there have been families which haven’t necessarily responded to their child’s illness in a... in a... in a way we would expect, that’s been really challenging for the nurses on the ground way out there to manage something. (Referrer 10)

Scope Hospital at home numbers, you know, in the grand scheme of things are tiny, so it’s going to be very hard to do really good quantitative research on Hospital at Home. What we can do is demonstrate qualitative, show how much it cost and show how much people like it, and then... (Referrer 10)

Scope because it takes a while to bed in. (Referrer 10)

Scope It doesn’t happen overnight and the equity issue, I think... I think is the one that bugs me the most. (Referrer 10)

Scope I think it’s certainly been a sensible way to make a start, and I think so long as we’ve got our eyes and ears open to opportunities to develop things differently and to see what areas we need to improve on through constant evaluation, then we’ll obviously do more good than harm. (Referrer 10)

Scope I think it was possibly anticipated that we’d be taking more acutely unwell children than has happened. (Referrer 12)

Scope Well, we have a Nurse... we have a discharge policy here for children with bronchitis... it really would [be] the ones that are just lingering on the oxygen that are fine, so. It would be quite a straightforward training process … nurses at hospital at home need to be [rotating] on the ward. You know, they need to be doing shifts on the ward; the Nurses on the ward need to be doing shifts in hospital at home so you really are skill mixing. (Referrer 12)

Scope [potential to broaden the scope of the service]

I don’t know. I think sometimes it’s... I think the problem with doing too much is... I don’t know how easy it’s going to be. In a way you... I think you need to have... I, personally, would think you need to focus on two things to show a difference and then you’re going to get people on board. And I think there is a problem with getting people on board with this project, and that would be a good way of doing it and getting UCH on board doing that as

119

Theme What they said

well. That would be my personal... my opinion. We’re going to reduce ED admissions and you focus on asthma, you focus on viral-induced wheezing, you know, and you show that you’ve reduced ED admissions by them [patients] not coming there in the first place. (Referrer 12)

Scope [potential to broaden the scope of the service]

Well, I think, again, what would make a difference… hospital at home is acutely unwell children who, if the Service didn’t exist, would still be in hospital. I think you need to ask the Consultants who they think... almost what their top group of babies or children who remain in hospital because there isn’t a Service as such for bronchiolitis. Just get the top few that they think they would make a difference if you skill up the Nurses. Maybe just work on those. It’s just do it in a stepwise way, isn’t it, I think? (Referrer 12)

Scope [Interviewer] In terms of the diagnostic conditions that the hospital at home Service can take, do you think they're appropriate?

[Interviewee] Yes. They're fine. (Referrer 13)

Scope A couple of times we’ve sent some children home from A and E with, like, asthma that, you know... rather than keeping them to the four hours we’ve Referrals managed to get them out an hour earlier knowing that hospital at home can... review them, so. That’s been positive in terms of asthma, but other than that not really. (Referrer 14)

Scope Definitely looking at broadening it, but at the moment we’re probably using it more in an extension of the Children’s Community Nursing Service rather than... (Referrer 14)

Scope …and, you know, perhaps if they can upskill their Nursing workforce a little bit more, expand the conditions, which I know is the plan and, like I say, we’re all behind, then I think maybe the impact on the referrals that they get from A and E we could increase and work with them on that. Like I say, you know, I think it’s a really good idea and it’s developing. (Referrer 14)

Scope I just think from our point of view it just needs to be a little bit more acute. (Referrer 14)

Scope And I really do think they need to, you know, get their Nurses some accredited assessment courses under their belt. I think that would be really, Improvements you know, positive. And that was something that I, you know, wanted to champion at the end... in the beginning, but I’m not sure if... (Referrer 14)

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Theme What they said

Scope And I think, particularly if you want to expand that GP, Nurses need to be able to have a piece of paper or a qualification that enables them to be Improvements confident in the assessment that they do. (Referrer 14)

Scope So I think, you know, that’s something that I would really advocate in driving the Service forward and expanding its scope of practice and the boundaries and the acuity of patients that they can potentially take, so. I think in order to move forwards they’ve got to develop. (Referrer 14)

Scope I think we’re in a far better place than we were, you know, a year ago. I think there’s still work that can be done and I’m not 100% certain that we’re targeting absolutely the correct patient groups to maximise the service. (Referrer 15)

Scope So the children’s diabetic specialist nursing team have had a massive impact on the hospital attendance for children with diabetes who have unscheduled problems…

…if you took that model and expanded it across some of the other children’s chronic conditions, and asthma has to be top of the list in terms of the next chronic condition…

… But maybe this is something that the hospital home team could be doing, is looking at these patients so, you know, before they encounter the hospital but during the acute deterioration. They can contact them and say, this is what we could be doing. (Referrer 15)

Scope there’ll be some patients where the GPs don’t feel confident and they feel actually, they really do need to go to the emergency department and the other problem is that you’re only going to be able to apply it to a limited number of conditions, because with the best will in the world, these are not doctors the GPs are referring to, these are advanced nurse practitioners. (Referrer 15)

Scope So providing short term oxygen for patients who’ve had an admission with bronchiolitis, I suspect, is probably a really good thing. I think it gets slightly more contentious when you try to pick them up at the beginning of their journey and it all boils down to who’s doing assessments and what level of support do they have to do that assessment, and that’s not to say they can’t do it but you need to be much more careful if you’re picking someone up at the beginning of the illness than if you’re tiding them over at the end of an illness, when they’re generally more predictable and more stable.

… So I think that will be my thoughts around the bronchiolitis is it depends which end of the illness pathway you target. (Referrer 15)

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Theme What they said

Scope I think what’s nice about it is it’s responsive and it does try to look and see where it can be maximised. I’m still not convinced we’ve got the most efficient use of the resources that we have in terms of actually preventing admissions. I think we’re getting much better at early discharge with hospital support because of the ability to give things like three times daily antibiotics, so I think that’s definitely a significant impact. I think it’s the front end of it where it’s less clear. (Referrer 15)

Scope I think focusing it on ED probably isn’t the way forward. I think it needs to be looking at patients who can either self-refer with a set criteria or possibly GP referral for again a strict criteria of illnesses that they think can be managed along that route. (Referrer 15)

Scope We prompt them for, like… if there’s a baby, …feeding problems, or things that you can prompt, we definitely do. I think it’s also, like, as the service is growing, I guess, and as we get more used to it, you start to think, kind of, outside of the typical referral criteria. So, there are certain babies that aren’t your typical, kind of, don’t meet exactly the normal criteria of baby you admit, but actually, there’s no reason why they couldn’t. And I think as they become more familiar with it, you start to think about different types of referral for different babies as well, that could also work in hospital at home. (Referrer 16)

Scope So, I think one of the main challenges is just… it’s just when we seem to always identify Haringey babies who we’d like to transfer hospital at home. I think that’s the main… That’s one of our main difficulties. We find these ideal babies and then they can’t go…

Yes, which is tough. I then think it’s when you see the … you see how good a service it is and then you see all these children that don’t have, sadly, have access to it. It’s a bit of a shame. But, the main challenges of it, I guess, so, I guess, yes, expanding, possibly expanding the scope, and just making sure that it’s… everyone thinks about it. I think that’s the thing. Because I think when you’re on a busy day it’s easy to forget just to forget just to, kind of, to even think or, like, you know, just…(Referrer 16)

Scope Because I think we get a lot of babies particularly on the ward who … with, not only with bronchiolitis, with perhaps, like, with a chest infection or a viral, you know, a viral-induced wheeze, who are actually completely well, but they’ve just got a tiny little bit of an oxygen requirement. And actually, we sit, and we sit, and we sit, until their SATs are just okay on oxygen, and then we let them go… on air, and we let them go home. And actually, they probably could have gone home 24, 36 hours earlier. So, actually, yes, no, I think that would be a really good thing.

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Theme What they said

Another thing we were discussing, actually, the other day was talking about all these babies with feeding problems that come into A&E and end up, kind of, sitting on the ward and having, you know, being admitted and medicalised. But we were just wondering whether there was any scope for some of these direct, almost, direct, like, midwife-to-hospital at home referrals or kind of things. Or babies that have been seen in A&E that we can just discharge straight into hospital at home.

That’s what we … Because I think that was, it was [named individual] I was talking to, actually, the other day about it, saying whether or not there is scope for the midwives… Because gasses and SPRs and things that could be done, but then provided the baby’s otherwise well, they could go home. That would be the other thing. Because we seem to admit a lot of these babies, and they’re well, and actually probably don’t need to be here. And we’ve actually just done an audit looking at it, but these babies then sit here and they don’t get any breast-feeding support, and actually probably would get more breast-feeding support in the community.

[Interviewer] And are they sitting around in A&E waiting for breast-feeding advice or [unclear 00:11:49]?

[Interviewee] So, yes, and then they come to the ward and I think the average time they wait is 36 hours for a breast-feeding advisor. And actually, if they were at home and they could go to their local children’s centre or their local breast-feeding support group, then actually they’d probably get more out of it. And if hospital at home could be there with them and doing their tube-feed and doing the … you know, that kind of stuff, then that would be really, that would be really good. So that’s just one of the things we’ve just, we’ve talked about a bit.

[Interviewer] And then, I think maybe jaundiced babies and phototherapy, that [unclear 00:12:20].

[Interviewee] That would be really good as well. Definitely, because… And that often is, like, the overlapping group, so we have that group that come in and have feeding difficulties at the same time. And actually, all of the stuff that gets done for them could definitely get done at home. But, yes, no, I think there’s definitely room to expand the diagnostic criteria, because they’re all definitely… And I think, just, the one thing I think I would change, is I would make it part of the induction at the very start of the year for everyone. (Referrer 16)

Scope: age group Whereas what we're offering for adolescents as a cool-out period is actually being away from their parents, because the parents can't manage them anymore, possibly, you know.

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Theme What they said

…I don't know any hospital at home models that cover adolescents.

(Referrer 7)

Scope: age group 16- to 18-year-olds attend A and E for, you know, acute illness, injuries, mental health, you know, deliberate self-harm, alcohol, drugs.

… I don’t think you can make much impact on that cohort age unless, like you say, they’ve got chronic things like diabetes or asthma that they’re not really keeping on top of. (Referrer 14)

Scope: age groups I think the common reason 16 to 18 year olds come into hospital are either for asthmatics with an exacerbation of their asthma and I’ve said before, I’m not clear quite what this hospital at home service can offer them. And the second area, unless they’re being assessed directly at home without coming to hospital first, but that’s not currently happening. And then the other areas are things like overdoses, mental health issues and none of those are relevant, so I’m a bit guarded in what benefits there might be for that age group. (Referrer 4)

Scope: developments My role was to actually implement the service from scratch in March 2014. So no service existed. There was just a business plan, a pot of money and a concept. (Referrer 5)

Scope: diagnostic I think the service has tremendous potential is providing oxygen at home for conditions babies with bronchiolitis and it needs to be done safely. It’s in… we, the community nurses look after children with oxygen at home for other conditions already, when it’s something stable. (Referrer 4)

Scope: diagnostic If a safe protocol can be put in place for managing babies with jaundice to conditions everyone’s, sort of, satisfaction from a clinical governance and safety perspective, I think that will be a great move forward as well. I think the potential for managing acutely unwell children at home as a general take- all service, is less clear, because the numbers with individual conditions might be small and I think targeting it around some very specific scenarios, which was always the original vision of the service, is the way to go. (Referrer 4)

Scope: diagnostic Well, I think, as for nebulisers, they would be an area that might be conditions investigated. Diarrhoea and vomiting would be another one where nasogastric feeding could be implemented with supervision at home. I Eligibility don’t know how much of that is done already. I mean, I think they already look at newborn babies who’ve lost, you know, maybe a little bit over 10% of their body weight, but again I don’t know whether they have those babies with nasogastric feeding at home.

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Theme What they said

I mean, they already do IV antibiotics at home, they already... I’m sure they do a degree of NG feeds at home. I think oxygen would be a major development. I wasn’t aware that that was being looked at. That would need very careful scrutiny. Nebulisers, phototherapy, that would be... those would be big things, because at the moment, if a child’s needing nebulisers more frequently than four-hourly, they’re basically in hospital, or even inhalers more frequently than four-hourly, they’re in hospital, but if they can have it, say, three-hourly or two-hourly at home with supervision, then that would be... that would be good. I mean, the other thing would be obviously whether the system could be extended to longer hours, because at the moment I think it’s 12 hours a day, isn’t it? (Referrer 8)

Terminology I think the one thing that needs to really be clarified is the difference between Extended Nursing and hospital at. …the criticisms are always going to be... and this is what needs to be really carefully worked out in order for it to not... in order for it to succeed.

But the criticisms are always that this is just Extended Nursing. It’s antibiotics at home. It’s just Extended Nursing. What is the difference?

And I think that’s where we are at the moment and that has to be... we’ve got to work on that to make it Extended Nursing plus.

… see the role of hospital at home as opposed to Extended Nursing is another question because I think that’s where it’s got a bit blurred. (Referrer 12)

Terminology and And, so, we struggle. It is again circular, but what... though maybe again definitions some of our ignorance and habit and difficulty in our changes of way of practice, so. There is also a slight grey area overlapping between so-called

the previous Community Nurses Service and the hospital at home Service. Perceptions of service (Referrer 1)

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Appendix 3 Hospital at home NPT questionnaire (N=17)

Table 3 Satisfactory or Question Very Good (%) Good (%) poor (%)

Overall how would you rate the care 94 6 0 you received?

Question Neither agree, Disagree or Strongly Agree nor disagree Strongly agree (%) (%) (%) disagree (%)

I had confidence and trust in the staff 71 23 6 0 member who I saw

I was involved in as much decision making around my care as I wanted to 76 23 0 0 be

The information I was given about my child’s condition helped me to 65 23 12 0 understand how to better manage at home

I was given contact details for the team and the hours the team works and who 76 24 0 0 to contact outside team working hours

If I had a friend or relative in a similar situation I would recommend this 82 18 0 0 service

Box 1 Parent open-ended responses

All the nurses have been incredible! Always on time, extremely helpful and great with [child’s name]. Kiera in particular was brilliant helping us when we were on the ward.

Thanks to everyone for making a stressful episode much more bearable! [PRT 1]

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Handy for at home single mums. [PRT 2]

It’s great how they are helping parents just like us. Brilliant service, thank you. [PRT 3]

Fantastic service which meant we could come home from hospital. We were always told when the nurse was coming and they were very flexible.

It was very reassuring when [child’s name] had to be readmitted because of the good communication between hospital at home and the IFOR ward team.

The team made sure they had space for us when they thought we may be discharged and seemed to bend over backwards to help us.

Very sympathetic and kind staff. [PRT 4]

I felt very reassured and was given all relevant information to help me feel confident enough to stay at home with my little boy and knowing that the nurse was on a direct line was very good. [PRT 5]

The working hours are good. Dolores is a great nurse, very reassuring. [PRT 6]

Because they helped me get my daughter better. [PRT 7]

Reassuring service/and having care at home. [PRT 8]

Very supportive. Putting you at ease. [PRT 9]

It was everything great! Great experience. [PRT 10]

Happy to have home service, easier to look after family at home. [PRT 11]

Support and advice. [PRT 12]

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Addition [sic] support and advice and reassurance. [PRT 13]

It’s a great opportunity to recover at home. My son is feeling better every day and it is reassuring that he is checked regularly. [PRT 14]

Such a helpful service made us more confident and contributed to him improving. Thanks! [PRT 15]

Was incredibly helpful to have my son’s antibiotics delivered at home instead of having to travel to UCH every day for 14 days. Post-birth and while still recovering.

Also much quicker for the antibiotics to be administered at home and less disruptive. [PRT 16]

Excellent service. Very professional staff, friendly, helpful, professional, clear communicators.

Did what they said they would and acted as a link between hospital and home.

[PRT 17]

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Appendix 4 Selected quotes from interviews with families who have experience of the hospital at home service

Table 4

Theme What they said

Attitude to Were you happy with the service that was provided? hospital at home

IE Yes, I would say I was. (Parent 1) Positive

Attitude to Thinking about it, you know, it seems to work really well. (Parent 1) hospital at home

Positive

Attitude to I don’t know what we would’ve done without them, actually, because they were hospital at home absolutely amazing. (Parent 2)

Positive

Attitude to I haven’t got a criticism of the service at all, so nothing. I just thought they were hospital at home amazing. (Parent 2)

Positive

Attitude to It’s a very important service I think and, you know, it would be terrible if they, if it hospital at home got cut because I think it really does help families that, you know, children in [named individual’s] position. (Parent 2)

Positive

Attitude to I was really impressed with the service we got. (Parent 3) hospital at home

Positive

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Theme What they said

Attitude to I can’t say anything bad about it. (Parent 3) hospital at home

Positive

Attitude to [Interviewer] So overall how would you, kind of, rate your experience of using the hospital at home service: very satisfied...?

[Interviewee] Very satisfied, yes.

Positive [Interviewer] Yes? And would you use the service again, do you think?

[Interviewee] Yes. (Parent 3)

Use hospital at home service again

Benefits I mean, last time I was in I had to have a big chat with the doctor because they didn’t want to let her go because of her breathing noise but I said, if that’s the

case we are going to be here forever. [unclear 00:07:27] forever, you know. I Earlier discharge mean, I suppose maybe it’s a small reassurance for the doctors as well…. …[hospital at home] it’s reassuring for me but I think it’s also reassuring for the doctors to allow her to go home slightly earlier than they maybe would do normally. (Parent 1) (Parent 1)

Benefits to family From my point of view as well it’s great because after being in hospital so often you are desperate to go home. (Parent 1)

Earlier discharge

Benefits to family I’ve been in so many times with her I, sort of, know when she needs to be there and when she doesn’t so, if anything, I was quite keen to go home. I was doing

basically everything there anyway so there was nothing that I was doing there Earlier discharge that I couldn’t do at home. So, no, I wasn’t anxious at all. (Parent 1)

Benefits to family It’s just one primary thing being able to be at home and then in addition it was just having the support for anything I was unsure of. There was some follow up

appointments where they take checks on her which were helpful as well because Reassurance sometimes when you’re doing something there may be something you may miss. (Parent 1)

Benefits to family It’s just sanity if I’m going to be honest. The hospital’s great, you know, I was really appreciative of their help but after a few nights, or even a week, you’re

desperate to go home. With my case [named individual] has very complex needs

130

Theme What they said

Home so I’m actually unable to leave her on her own. Even with the nurses there and environment stuff she can’t be left unattended at any point so I need to be there the whole time. Luckily enough they allocated a cubicle because [named individual] has

light sensitive epilepsy but you’re still just stuck in the room, like, day in day out. (Parent 1)

Benefits to family [Interviewer] Whereas when you’re at home you’ve, kind of, got your own things around you.

[Interviewee] Well, exactly [unclear 00:05:51] I can be getting on with stuff and Home I’m still there for her but I’m not sitting in one room. (Parent 1) environment

Benefits to family It just really depends on how unwell she is but generally maybe it, sort of, means we could go [home] maybe a day earlier or so having the hospital at backup.

(Parent 1) Earlier discharge

Benefits to family She absolutely prefers being at home. I mean, she’s non-verbal but I just know. I mean, she sleeps a lot better at home. It’s obviously a lot quieter, it’s an

environment she’s a lot more comfortable with and she tends to get well a lot Home quicker. I mean, it just depends on the severity of her illnesses. Once you’re in environment you’ll be there for the next two weeks because she needs to be but neither of us gets much sleep there, which you probably know anyway. So, yes, for sure. (Parent 1)

Benefits to family They were really, really good and they were really good because I was really struggling mentally after a bit. I just thought he wasn’t ever going to get better.

They were really supportive with that as well. (Parent 2) Reassurance

Benefits to family If the hospital at Service hadn’t existed, what do you think would have happened? [Interviewer]

Home environment We would’ve had to go in and out of hospital three times, you know, three times a day when he was ... after the operation definitely. He might have had to stay there for longer which would have put him at risk of other infections. A 13 year old boy he was very good but it was very difficult for him. The minute he’d come home, he could play games, he’d be at home for meals, he could sleep at home. You know, it meant that, it just meant that, you know, sort of as far as possible we could carry on with normal life in-between the medication so… (Parent 2)

Benefits to family [Interviewer] Do you have other children in the house? [Interviewer]

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Theme What they said

[Interviewee] Younger, four years younger. (Parent 2)

Home environment

Benefits to family I’m not sure the hospital really wanted us, actually…. Being that he was... I mean, all the situation was, was that he just needed to be administered his antibiotics

twice a day and that was it; otherwise, they just felt that he was fine, so, I mean, Earlier discharge in some ways they were trying to get us to go home, too. (Parent 3)

Complex needs It’s because she has very complex needs. (Parent 1)

Experience of They did every day for just the first three days I think it was. Then after that it hospital at home was just when I needed them I’d call.

… Yes, it was their mobiles as well. (Parent 1)

Experience of Basically, when he was discharged, he had the intravenous antibiotics for about hospital at home three weeks and he had ... but he also had to go back to school. And they went to school and gave it to him. (Parent 2)

Experience of They came when ... they’d say when they were coming, they’d be there at that hospital at home time, (Parent 2)

Experience of They were able to organise the nurses to come to administer the rest of his hospital at home antibiotics for the week. (Parent 3)

Experience of We had our first nurse come in that evening... about eight o’clock or so, for his hospital at home first course at home, and yes, they were really good. (Parent 3)

Experience of Friday, that day his cannula wasn’t working, and the nurse who came in that day hospital at home was really good. (Parent 3)

Experience of She had to explain to me what you’d need to do and how she couldn’t do it and hospital at home advised us to go back to the UCH (sic) to get it re-administered, and then followed up with me, checking with the pharmacist and everything, whether he’d

be able to get his antibiotics, the second dose, in the evening for the timeframe, Attitude to because it had to be a 12-hour span, I think, or, sort of, up to a 12-hour span. So hospital at home she was really good because she kept, you know, calling me back, trying to let me know what the progress was. (Parent 3)

Positive

Experience of The nurses that came, really friendly, very knowledgeable, and, I mean, ended hospital at home up... I mean, I had physical problems with my little one feeding, he was tongue- tied, and I mean, they even tried to help me with that. (Parent 3)

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Theme What they said

Attitude to hospital at home

Positive

Experience of One thing that I did find that was really nice is that each nurse who came knew hospital at home who the next nurse was on shift. (Parent 3)

Continuity

Reason for It was a suspected chest infection. admission [Interviewer] So, she was in the hospital more than one time with this?

[Interviewee] Yes, we’ve been in there quite a lot, quite a few times. Prior to that, I think last year she was in three, maybe four times.

[Interviewer] With the same thing?

[Interviewee] Yes, I mean, slightly different symptoms but more or less the same thing. She’s very prone to respiration [? 00:00:37]. She catches colds easily which can then go to her chest. (Parent 1)

Reason for [child was] 13 at the time. admission … Bad appendicitis… he had a very protracted illness after that… his appendix was necrotic. He ended up with peritonitis and then constant infection…which is why the hospital at home got involved. (Parent 2) Complex needs

Reason for My son was born on a Saturday. Sunday, we ended up coming back into admission hospital, seeing that he wasn’t feeding, very lethargic, and he had a bit of a grunting sound, so we ended up going back through emergency, they ended up

admitting him, saying it seemed he might have had a viral infection…(The Complex needs procedure for emergency re-admissions is shown in Appendix 12 Procedure for referral to hospital at home). (Parent 3)

Recommend [Interviewer] Would you be happy to use the service again in the future if you hospital at home needed to? service [Interviewee] Yes, absolutely.

[Interviewer] Is it something that you would recommend to other people?

[Interviewee] Yes, I would. (Parent 1)

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Theme What they said

Use hospital at home service again

Recommend [Interviewer] Would you use this service again? hospital at home [Interviewee] Oh, definitely. Yes. service [Interviewer] And is it something that you’d recommend to other people that

you’ve used? Use hospital at [Interviewee] Yes. (Parent 2) home service again

Recommend [Interviewer] How would you kind of rate your experience? hospital at home [Interviewee] Ten out of ten. Yes, no hesitation. (Parent 2) service

Recommendations I can’t say that there’s anything that I thought maybe this could have been better or... (Parent 1)

When became It was while we were in hospital and I was, kind of, desperate to go home. Then aware of hospital they told me about it and I think that would have been probably about a year at home ago or longer. (Parent 1)

When became Just basically outlining how it works and having the support at home. Obviously aware of hospital if she needs hospital then at one point there was certain medication at hospital at home that you couldn’t do at home, but once she starts to get a little bit better it just saves us being there. (Parent 1)

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Appendix 5 Case Studies A-F Case A: 14 year old boy, post-operative wound leaking, required dressing changes and IV antibiotics, reduced hospital stay.

Patient A is a 14 year old boy who after undergoing an appendectomy in 2014, presented to A&E 2 months later with pain and swelling around his scar. The appendectomy scar was reopened and a laparoscopy was performed which found caecal adhesions to the anterior abdominal wall. Patient A initially recovered well from this second operation however whilst still in hospital (he was in hospital from 21/08/14-28/08/14 [8 days]), the wound began to discharge purulent fluid. Following discussion between microbiology, the community nursing team and the parents, it was decided to begin intravenous antibiotics and regular dressing changes, both in the community. The patient was also seen for a weekly review in the surgeon’s clinic. Patient A was admitted to the hospital at home service on the 28/8/14 and discharged on the 19/9/14, during this period 49 home visits were made for the administration of IV antibiotics and dressing of the wound. Also taking into account the 65 visits made by the Children’s community nurses this amounts to a total of 114 visits, which equates to 2 weeks in hospital. This demonstrates how the hospital at home service has prevented the patient from having a fortnight’s stay in hospital which is beneficial not only to the individual but to their family and to the NHS. Alongside the home visits, hospital at home was able to give the afternoon dose of antibiotics in school which allowed minimal disruption to the young person’s daily life. The hospital at home nurses involved in this case commented that they were also able to provide emotional support to his mother and to liaise closely with surgical team during clinical reviews and follow ups; this close relationship helped to provide a more personal and holistic care for the child.

Case B: 4 month old boy, suspected bronchiolitis, later diagnosed with Laryngomalacia, hospital at home monitored weight gain and provided feeding support, shortened hospital stay.

Patient B is a 4 month old boy who was initially admitted to hospital with suspected Bronchiolitis. He was referred to Hospital at home for respiratory assessments and feeding support. Hospital at home visited the patient between 16/03/15 and 02/04/15 (18 days) totalling 23 visits. The patient required feeding via nasogastric tube due to failure to thrive. Hospital at home nurses documented harsh upper airway noises suggesting upper airway congestion and was referred back to Whittington Health when hospital at home nurses noted laboured breathing. Whilst as an inpatient and an

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outpatient he was reviewed by a dietician and also the SALT team. The patient was later reviewed by Great Ormond Street and diagnosed with Laryngomalacia.

Hospital at home staff continued to see the patient in order to document weight gain and provide feeding support before they referred him to CCN who took over to provide further support in the home. This case highlights the ability of hospital at home to work as part of a multidisciplinary team and furthermore, their ability to provide care in the home and recognise symptoms and signs requiring further review at an early stage, which prevents unnecessary hospital stay.

Case C: 1 month old baby boy, Congenital Heart Disease, hospital at home provided palliative care.

Patient C was referred to hospital at home at 1 month at age for breathing difficulties and feeding support. After being alerted to concerns about the child’s breathing, a nurse from hospital at home went to the home to review the patient and subsequently called an ambulance in order for the child to be reviewed at hospital. The child was referred to Great Ormond Street where he was diagnosed with Congenital Heart Disease, SHONE’s complex and pulmonary hypertension. The child had a severely hypoplastic arch and isthmic coarctation.

The child was discharged from GOSH and referred back to hospital at home in order to provide palliative care in the home. Hospital at home provided support to the local palliative care team by addressing needs out of hours; the hospital at home team also supported the mother and worked with GOSH palliative care team. Hospital at home staff visited the patient from 31/12/2014 to 30/3/2015 (10 visits). There was also involvement from the CCN team who attended the patient 19 times.

This case highlights the ability of hospital at home to provide a wide spectrum of care depending on the needs of the patient and their family. It also demonstrates how the hospital at home service can act to ensure a personal and patient-centred service especially in difficult situations such as paediatric palliative care. The hospital at home team provided a vital role by listening to the family and acting promptly to the information provided to them ensuring timely assessment and intervention. In addition their knowledge of the family throughout this difficult period enable them to support the family in navigating the health service and to play a central ‘link’ role between the family, Great Ormond Street and Whittington Health to ensure good communication between different health professionals.

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Case D: 5 year old girl, E.coli pyelonephiritis, renal impairment and dehydration, hospital at home taught her father to administer IV antibiotics.

Patient D was referred to hospital at home at age 5 with E.coli pyelonephritis, renal impairment and dehydration after being discharged from hospital. Hospital at home reviewed the patient for fluid intake and other general observations. It was noted by hospital at home nurses that the patient continued to have fever despite use of antipyretics. The patient was referred to GOSH where it was decided to give the patient TDS-intravenous antibiotics for up to 28 days. The patient was referred back to hospital at home. Initially the hospital at home nurses gave the morning and afternoon doses of antibiotics at home so the family only had to go into hospital once a day for the evening dose. Hospital at home supported the father in learning how to administer the antibiotics so that eventually he was able to give the medication to his daughter without health care professionals having to come to their home multiple times a day. The family were even able to go to a wedding in Wales whilst the patient was still on antibiotics. Hospital at home nurses were in regular contact with the family, making sure that they had enough antibiotics to complete the course.

In summary, the patient was initially referred to hospital at home from 6/6/2014 to 8/6/2015 before being referred back to hospital and then GOSH. The patient was later referred back to hospital at home for IV antibiotics from 22/6/2014 to 18/7/2014. She had approximately 44 home visits and her hospital admission was shortened by 28 days.

This case demonstrates the ability of hospital at home to teach family members key skills in order for them to provide care for their relative in their own home without the presence of health care professionals. This empowers the family and allows them to maintain as much normality as possible during what must be a very difficult time. Furthermore, it not only prevents an unnecessary 28 day stay in hospital but also prevents the three times daily visiting by hospital at home staff.

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Case E: 13 year old girl, long term complex care patient suffering from Miller-Dieker syndrome; hospital at home contributed to her at home care plan and made clear that her mother could refer her daughter to hospital at home if necessary.

Patient E is a 13 year old, known long term complex care patient living in the community. She has Miller-Dieker syndrome with epilepsy and has a ketogenic diet delivered via nasogastric tube. The patient had a care plan at home with at-home nebulisers, home oxygen and antibiotics. The role of the hospital at home nurses has been to support the patient’s mother with her daughter’s at home care plan, in order to try and keep the child out of hospital and well at home. If the patient experienced a deterioration in respiratory effort or her requirement for the at-home nebulisers increased, her mother could refer her daughter to hospital at home. A nurse would then visit the patient and assess the situation and decide, after discussing with a consultant, whether or not it is necessary to admit the patient to hospital. This system prevents unplanned acute admissions to hospital whilst still providing prompt and appropriate care for the patient and enables the child to remain in their home environment whenever possible.

Hospital at home most recently provided care from 30/1/2015 – 5/2/2015 totalling 6 visits.

Case F: 2 year old boy, presented at A&E with burn to right groin; hospital at home nurses carried out wound dressing and monitored the general health of the child as well as becoming involved in a safeguarding process.

Patient F is a 2 year old infant who presented to A&E with a burn to the right groin which prompted social service concerns. His mother told staff at A&E that at 4am he had knocked a cup of milk onto himself which had been placed there by her at11pm. Because the injury did not match the explanation and because of concerns about late presentation to A&E he was referred to social services. Hospital at home nurses conducted home visits to change dressings and assess the general health of the child, had telephone calls with his mother and organised telephone reviews with the attending consultant. The child was referred to hospital at home from 28/5/2015 to 2/6/2015 (6 days) and had 11 visits. It was later found out that the child was admitted to another London hospital with a fractured arm, and the Whittington Health consultant and safe guarding team were informed. This case highlights the key role of hospital at home in being able to work as part of a large multidisciplinary team and gain access to information from the community that is key to the safeguarding of a child.

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Overall benefits:

The home environment is more relaxed and comfortable for most patients and their families. Providing care in the home allows nurses to find out more about the child’s home environment and keeps the family unit together. The hospital at home service gives access to information about the patient’s home life including the dynamics between different family members and the child’s home environment. This information can be important in the provision of appropriate care and enables the health team to tailor their input more effectively. This enhanced information can also support health professionals when considering the safety of the child in and out of the home. The nurses involved in hospital at home have commented that due to more than one encounter with the family they can build relationships, carry out further assessments and gain further insights and information about the patient that help to enable more holistic care.

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Appendix 6 Framework for case studies for hospital at home service Table 5