Evaluation of the Big Lottery Fund Palliative Care Initiative
Final Report
September 2007
PRINCIPAL INVESTIGATORS
Professor Yvonne H CarterProfessor Roland Petchey
Dean, Warwick Medical School Professor of Health Services
Pro-Vice Chancellor (Regional Engagement)Research and Policy
The University of WarwickCity University,
Coventry,Northampton Square
CV4 7ALLondon, EC1V 0HB
Tel:+44(0)24 7657 4007Tel: +44(0)20 7040 8796
Fax:+44(0)24 7652 8375Fax:+44(0)20 7040 8595
Email: Email:
LEAD RESEARCHER
Ms Jacky Williams Senior Research Fellow (Warwick Medical School)
CO-RESEARCHERS
Ms Alison CopelandResearcher (Queen Mary, University of London)
Dr Daniel Kelly Reader in Cancer & Palliative Care (Middlesex University)
Dr Alastair OwensLecturer in Geography (Queen Mary, University of London)
Professor Mari Lloyd-WilliamsProfessor and Honorary Consultant in Palliative Medicine (Liverpool)
Acknowledgements
The research team are extremely grateful to the many people involved within case study sites and elsewhere, who gave up their valuable time to participate in this evaluation and also to the staff of the Big Lottery Fund (policy officers; programme managers; case managers and evaluation managers) who provided information and guidance over the course of the evaluation.
We would also like to acknowledge additional members of the evaluation team:
Dr Mohen Asadi-Lari (previously of University of Warwick)
Professor Sarah Curtis (previously of Queen Mary, University of London)
Jamie Fagg (previously of Queen Mary, University of London)
We would also like to thank Kimberly Thomas for survey data input and Christopher McConkey for data analysis (both at Warwick University.)
Thanks are also due to Marianne Mann and Alison Taylor; their administrative and clerical support has been invaluable.
Thanks also to Antonia Murphy for providing professional supervision for Jacky Williams throughout the evaluation.
Interim evaluation reports can be found on the BIG Lottery Fund web pages at:
Copyright: Big Lottery Fund 2007
Published by:
Big Lottery Fund,
1, Plough Place,
London EC4A 1DE
Tel: 0207 211 1800
Fax: 0207 211 1750
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Use of material in this report must be appropriately acknowledged
The Big Lottery Fund
Foreword
Professor Mike Richards
National Cancer Director, England
The BIG Lottery Fund Palliative Care initiative led to the investment of £84m in a wide range of palliative care services across the UK over a three year period. Each country determined its own priorities for funding. In Wales funding was mainly directed towards investment in capital equipment. England, Scotland and Northern Ireland each put considerable emphasis on developing services for patients with conditions other than cancer. In England, a particular emphasis was placed on services for children, which were allocated £48m out of the total of just over £70m for England.
This report provides an independent evaluation of what has been achieved through this major initiative. The researchers from Warwick Medical School, City University London and Queen Mary University of London are to be commended for the quality of this evaluation which involved both a questionnaire survey of grant recipients and detailed case studies of a sample of schemes.
In total 275 grants were made as a result of the BIG Lottery Fund initiative. 780 staff were recruited from a wide range of professional backgrounds, along with around 450 volunteers. Many of the schemes provided additional training for staff and better information for patients. Importantly, new services were established for groups of patients who have historically been poorly served. These include patients with Huntington’s disease, Motor Neurone Disease and those from black and minority ethnic groups.
The authors of the report conclude that the BIG Lottery Palliative Care initiative has to be accounted a success on a variety of fronts. The diverse range of innovative services should be applauded, especially the establishment of services for non-cancer patients. In addition the programme has led to improved collaboration both within and across sectors. Importantly, many of the services have secured continuation of their funding from statutory sources, a clear indicator that they are valued locally.
Mike Richards
National Cancer Director
Table of contents
Acknowledgements
Foreword
Executive summary
Overview of the report
Section 1 Background
1 Big Lottery Fund palliative care initiative
Table 1 Allocated Budget and Programme Focus by Country
Additionality
1 1 Palliative care programmes in Northern Ireland & Scotland
1 2 Palliative care programme for adults in England
1 3 Palliative care programmes for children in England
1 4 Evaluation scope
Additional notes
1 4 1 Evaluation team
1 5 Methods
1 5 1 Case studies
Table 2 Typology of case study schemes for in-depth evaluation
1 5 1 1 Methodological reflections
1 5 2 Networking
1 5 3 End of grant life survey to all schemes
1 5 4 Systematic literature review
1 5 5 Geographical analysis
Map 1: Location of the 15 Palliative Care case study sites across the UK
2 Developing policy
2 1 Northern Ireland
2 1 1 Northern Ireland palliative care programme
Table 3 Overview of grant schemes across Northern Ireland
2 2 Scotland
2 2 1 Scotland palliative care programme
Table 4 Overview of grant schemes across Scotland
2 3 England, palliative care for adults
2 3 1 Cancer services in England
2 3 2 End of Life Care Strategy
2 3 3 England adult palliative care programme
Table 5 Overview of adult grant schemes across England
2 4 England palliative care for children
2 4 1 Voluntary sector funding
2 4 2 Independent review of children’s palliative care
2 4 3 Development of a National Framework for children’s palliative care
2 4 4 England children’s palliative care programme
Table 6 Overview of children’s grant schemes across England
2 5 Key points
Section 2 Findings
3 What worked?
Table 7 Survey Response (%) by country and programme
3 1 National stakeholder views
3 2 Service innovations
3 3 Awareness raising
3 4 Staffing projects
Table 8 Paid posts across all schemes
3 4 1 Volunteers
Table 9 Matching volunteers with patients and carers
3 4 1 1 Managing volunteers
3 5 Partnerships
3 5 1 Organisational partnerships
Table 10 Key partners and most important partner (% all schemes)
3 5 2 Practical partnerships
3 6 Organisational change
Table 11 Impact on schemes of health service reorganisation (% schemes responding)
3 7 Key points
4 Who did the Lottery-funded schemes work for?
4 1 The family
4 1 1 Children’s services
4 1 2 Adult services
4 2 Siblings
4 3 Adolescents and young people
4 4 Health and social care professionals
4 5 Patients with conditions other than cancer
Table 12 Number of adult schemes that reported providing services for patients with conditions other than cancer (% of all adult schemes.)
4 6 Referrals
Table13 All referral agencies and main referral agency (% of all schemes)
Table 14 Appropriateness and timeliness of referrals (% of all schemes)
Table 15 Mean numbers of patients and carers aged under and over 65
4 7 Key points
5 Why did grant schemes work?
5 1 Success factors
5 1 1 Service champions
5 1 2 Partnership working
5 1 3 Effective steering groups
5 1 4 Teams
5 1 4 1 Effective support mechanisms
5 2 Key points
6 Sustainability
6 1 Findings adult schemes
Table 16 Adult schemes that tried to obtain continuation funding (% respondents)
Table 17 Adult schemes continued in their entirety (% of those that had tried to obtain continuation funding)
Table 18 Adult schemes main elements continued (% of those that had tried to obtain continuation funding)
Table 19 Adult services continued indefinitely (% of those that had tried to obtain continuation funding)
6 1 1 Discussion on the sustainability of adult services
England
Northern Ireland
Scotland
6 2 Findings children’s schemes
Table 20 Children’s schemes that tried to obtain continuation funding (% respondents)
Table 21 Children’s schemes continued in their entirety (% of those that had tried to obtain continuation funding)
Table 22 Children’s schemes main elements continued (% of those that had tried to obtain continuation funding)
Table 23 children’s services continued indefinitely (% of those that had tried to obtain continuation funding)
6 2 1 Discussion on the sustainability of children’s services
6 2 1 1 The future of children’s home-based services
6 3 Key points
7 Conclusions
7 1 Achievements
7 1 1 Diversity and innovation
7 1 2 Extending the boundaries
7 1 3 Within sector and cross sector partnership working
7 1 4 Country differences
7 2 Challenges
7 2 1 Organisational change
7 2 2 Sustainability
7 2 3 Terminology and definitions
7 2 4 Transition between young people’s and adult services
7 3 Key points
References
Appendix 1 National overview of grant schemes
Appendix 2 Table of selected schemes
Appendix 3 National stakeholder participants
Big Lottery Fund
Department of Health
England
Children’s strand
Adult strand
Scotland
Northern Ireland
Appendix 4 Interview schedule for national stakeholders
Appendix 5 Follow up interview schedule for national stakeholders
Appendix 6 Vignettes
Vignette 1 Huntington’s Disease, palliative and social care project, Northern Ireland
Vignette 2 St John of God Hospice, Community liaison sister, Newry, Northern Ireland.
Vignette 3 Scottish Motor Neurone Disease Association, Scotland wide.
Vignette 4 Rachel House children’s hospice at home scheme, Inverness, Scotland
Vignette 5 ‘Caring Together - Making a Difference in adult palliative care at Home’ Sunderland
Vignette 6 Somerset coast adult hospice at home service
Vignette 7 South Worcestershire Adult community joint palliative care project
Vignette 8 Waltham Forest, adult palliative care scheme,
Vignette 9 Naomi House children’s hospice, Winchester
Vignette 10 Nottingham children’s Butterfly home-based and bereavement schemes
Vignette 11 Bradford children’s bereavement project
Vignette 12 Brent & Harrow palliative care home-based scheme
Vignette 13 Western Sussex, Snowdrop home-based and bereavement services for adolescents and young people
Vignette 14 Grimsby, St Andrew’s Hospice scheme
Vignette 15 Stockport Dragonfly project
Executive summary
Section 1 Background
Chapter 1 Big Lottery Fund Palliative care initiative
The Big Lottery Fund Palliative Care initiative allocated £84 million to a range of schemes focusing upon the provision of palliative care for adults and children with cancer and other life threatening / life-limiting conditions. Funding was intended to facilitate the support and development of local children’s hospices, increase the number of community teams and bereavement support services, improve the response to patient preference and enhance the provision of support and information services.
A total of 275 grant schemes were funded, but 3 schemes in Northern Ireland were revoked, resulting in 272 schemes. The highest concentration of adult grant schemes and a large proportion of children’s grant schemes were in areas where deprivation and deaths from cancer were highest.
The evaluation adopted a multi-method approach, collecting both quantitative and qualitative data. A purposive sample of 15 case study sites covering 18 grant schemes was evaluated in-depth. Over the duration of the evaluation 30 case study visits were completed, involving 135 interviews (including a number of group interviews) with a total of 139 people (many of whom were interviewed on more than one occasion.) In total, 24 key national stakeholders were interviewed at the outset and towards the conclusion of the initiative.
A survey was distributed to all 272 schemes as they approached the end their of grant funding.
Chapter 2 Developing Policy
Northern Ireland is undergoing a review of Public Administration and the Northern Ireland Assembly has been restored.
The Scottish Partnership for Palliative Care has increased access to palliative care support and services for people with life-threatening conditions other than cancer and promoted the integration of palliative care principles in the care of people with a range of progressive life-threatening conditions.
The National Cancer Director for England is leading on a Cancer Reform Strategy and an End of Life Care Strategy, both due for publication later this year.
An Independent Review of Children's Palliative Care has been published and a National Strategy for children’s palliative care is being developed for publication early in 2008.
Section 2 Findings
Chapter 3 What worked?
There were divergent viewpoints among professionals and also between them and the general public about the appropriateness of various terms such as ‘palliative care’ and ‘hospice’.
The BIG Lottery programmes funded service development that met previously unmet needs, such as specialist disease services (e.g. Huntington's Disease), chemotherapy at home and children’s hospice at home services.
A total of 173 schemes (64%) responded to the end of Lottery-funding survey.
The initiative contributed to raising awareness of palliative care. 80% of all schemes that responded to the survey had developed some form of information and 80% of schemes developed training at some level.
A total of 780 paid posts were created, with a high proportion being for nurses and unqualified health and social care workers.
32 schemes recruited a total of 446 volunteers who provided a range of services and in many cases, were matched with equal attention to patients and carers. Turnover of volunteers was problematic for some adult schemes.
Partnership working was a success with 28% of schemes working in partnership within the same sector and 78% across sectors.
A statutory health organisation was identified as the most important partner by 44% of adult schemes and 69% of children's schemes. The new services were well integrated within the local economy of palliative care provision.
Chapter 4 Who did the Lottery funded schemes work for?
Both adult and children’s programmes were developed to meet the needs of the entire family (sometimes including extended family), and many addressed social and psychological functioning.
Specific services were set up for siblings of children with life-limiting conditions, to address issues of grief and loss and to provide them with time and space of their own.
Some children's schemes addressed the specific needs of adolescents and young people but found that transition to adult services was often highly problematic.
Health and social care professionals benefited from having access to increased levels of information and training on palliative care and other associated issues.
Schemes made considerable efforts to increase the level of referrals for people with conditions other than cancer. Turning abstract need into an actual client base turned out to be more complex than first anticipated.
The survey analysis across all programmes identified nurses working in the community as the most reported referral agencies, with district nurses being the main referrer for 24% of adult schemes and children's community nurses for 40% of children schemes.
The difference between social services referrals to adult services and children’s services was statistically significant and may reflect cultural differences between statutory children’s health and social care organisations.
27% of all adult schemes and 31% of all children’s schemes reported that some referrals were inappropriate. 58% of all adult schemes and 66% of all children’s schemes agreed that referrals were made at the right time. 53% of all adult schemes and 65% of all children’s schemes agreed that the referral process improved over time.
The highest percentage of adult patients receiving services were aged over 65 years and male patients accounted for slightly more than female patients. More carers were aged over 65 and female.
Chapter 5 Why did the schemes work?
Some services were ‘championed’ by people at strategic levels who were committed to the development of palliative care services, particularly for those with conditions other than cancer.
Multi-sector and multi-agency partnerships contributed to the success of schemes. Steering groups, where they were put in place were also a contributory factor.
Larger teams appeared to be more effective in supporting each other. A majority of schemes provided additional support mechanisms to ensure the (physical and emotional) well being of staff.
Chapter 6 Sustainability
Most adult schemes attempted to secure continuation funding, with the exception of Scotland, where some of the schemes were time-limited and achieved their objectives within that time-scale.
97% of the adult schemes in England that had sought continuation funding were successful in securing some form of funding to continue their service(s) either in their entirety, main or minor elements. The majority of these schemes were funded indefinitely. There remained some uncertainty about the duration of funding for the remainder.
Statutory sector organisations were the main commissioners of continuing adult services in England.
50% of the schemes in Northern Ireland that had sought continuation funding were successful in securing funding to continue their service(s) either in their entirety, or main elements. A mixture of statutory and voluntary sector organisations funded the majority of these schemes for an indefinite period.
41%of the schemes in Scotland that had sought continuation funding were successful in securing funding to continue their service(s) either in their entirety, or main elements. Many of the schemes had been time-limited and produced information or training that would continue without additional funding. The funding picture for Scotland is mixed, with a higher level of voluntary sector schemes that secured funding from a combination of voluntary and statutory sector organisations.
41% of children’s schemes in England that had sought continuation funding were continued in their entirety. A further 35% of schemes succeeded in obtaining funding to continue main or minor elements of the service that was previously supported by a Lottery grant.
Children's schemes reported that the elements that were not funded were generally those that were most valued by families, relating to psycho-social care and support.
Continuing children’s home-based services may operate in a different way, and some will continue with reduced capacity. In some cases, considerable uncertainty remained for both service providers and service users about the long-term sustainability of their services.
Chapter 7 Conclusions
Lottery funding supported the development of service innovations that enriched and diversified the range of services available for adults and children.
Lottery funding accelerated the diversification of services from cancer to non-cancer conditions, from the hospice to the community and the home and from individual patients to families.
The initiative succeeded in its stated aim of encouraging partnership working between agencies and across sectors.
There were differences in the administration of programmes across the United Kingdom.