Voluntary Sector Care Partnerships New Models of Care Voluntary Sector Care Partnerships

Current Care Providers for the NHS Patient care is organised and delivered by a number of providers: Primary Care Community Care Secondary Care Local Authority 2

Future Care Providers for the NHS Recognising and utilising the voluntary sector as another care provider: Primary Care Community Care Secondary Care Local Authority Voluntary Sector Care - providing sickle cell and thalassaemia care and support services 3

Activities of the Sickle Cell Society Health education - Public and patient education to increase awareness of sickle cell Training and Development – mentoring, professional placements, prison officer training Health Promotion - Information, advice and counselling Outreach Care - Regional care services Respite Services - Children’s holiday, volunteering support Continued…. 4

Activities of the Society Advocacy Services - lobbying for improved services, support in accessing services Welfare Services - Educational and welfare grants Research and Development – Projects, studies, health impact workshops and assessments Referral Service – referring people to screening and care centres Expert patient development – scholarships, building support group networks

Sickle Cell Society ‘Services’ Activities/services confirm the contribution to health and social care by the Society Activities/services are delivered usually via community engagement or community development model (‘bottoms up’) Society is solely responsible for its own funding stream and its own sustainability. Anecdotal evidence of ‘savings’ to NHS from the services provided by the Society

Voluntary Sector Care Provider The Sickle Cell Society and Thalassaemia Society has major strength in community engagement which is an important factor in service design and commissioning for sickle cell and thalassaemia: NICE (Feb 08) ‘Different levels of community engagement could directly and indirectly affect health in both the intermediate and long term’ National Institute for Health and Clinical Excellence, public health guidance 9, Issue date February 2008 Continued…….

Health Impact Community Engagement Some approaches used for consultation with communities -such as a workshop –may have a marginal impact on health, but may impact on the appropriateness, accessibility and uptake of services. National Institute for Health and Clinical Excellence, public health guidance 9, Issue date February 2008

Society and Health Impact Regional Care Advisers’ outreach programme – providing advice and advocacy in the home. Standards for the clinical care of adults with sickle cell disease in the UK - nationwide consultation with support groups Doctors /patients engagement workshop – working together on issues to improve services (Appendix 1) …These examples are having/will possibly have intermediate and long term positive health outcomes

Other Levers The momentum for close collaboration with voluntary sector is also supported by: Tackling health inequalities: A Programme for Action (2003) Local government white paper (2006)-Strong and prosperous communities The White Paper: Our Health, Our Care, Our Say (2006) 10

Society as Care Partner Good track record of working with NHS professionals, professional bodies and organisations: The NHS Sickle Cell and Thalassaemia Screening Programme UK Forum on Haemoglobin Disorders   Sickle Cell and Thalassaemia Counselling Centres Regional Antenatal Teams  Evidence of activities /services for users   Continued….. 11

Society as Care Partner Good/ improving track record of political lobbying: An All Party Political Group (APPG) is in and Sickle Cell Society is working alongside the UK Thalassaemia Society, the NHS Sickle Cell and Thalassaemia Screening Programme and MPs to advance care and awareness of screening. 12

Key Driver for Voluntary Sector Care The NHS Constitution sets out six principles ‘enduring high-level rules’ governing how the NHS works: Principle 6 –’ The NHS is committed to providing best value for tax payers’ money and the most effective and fair use of finite resources.’ DH (2008) A Consultation on The NHS Constitution:

The Way Forward Explore applying NICE recommendations to Sickle Cell and Thalassaemia. Nice recommends and sets outs prerequisites on four groups who should take action: Group A – People involved in planning, design funding and evaluation of national , regional and local initiatives Group D – People who commission, plan, design, deliver and manage community engagement activity NICE, public health guidance 9, Issue date February 2008 Continued…….

The Way Forward Group B – Commissioners and providers in public sector organisations….and the voluntary sector who seek to involve communities in planning, designing, delivering, improving, managing and the governance of: health promotion activities activities which aim to address the wider social determinants of health area-based initiatives NICE, public health guidance 9, Issue date February 2008 Continued…….

The Way Forward Group C – Members of community organisations and groups and community representatives involved in health promotion, activities to address the wider social determinants of health and area based initiatives. NICE, public health guidance 9, Issue date February 2008

Some Possible Outcomes Wider collaboration and networking among stakeholders Increased involvement of the wider community in service planning and delivery Wider and ongoing consultation with patients and stakeholders Extension of care providers to include voluntary care provider for ‘grass roots’ care services Cont’d…. 17

Some Possible Outcomes Opportunity/forum for stakeholders to share ideas and best practices and audit outcomes Core funding and resources to support and sustain the Sickle Cell Society and the Thalassaemia Society as health care partner provider A cost effective ‘bottoms up’ model for community engagement and community care 18

A Community Engagement Master- Lessons for Sickle Cell

Taking a position within the community

Connecting with the Community

Communicating at the right level

I see friends shakin' hands, Still Reaching your Target Audience

Outreach to get into local communities

Replicate local efforts nationally Are also on the faces Replicate local efforts nationally

Value the importance of relationships sayin' "How do you do?" Value the importance of relationships

Reaching out to individuals and families what a wonderful world Reaching out to individuals and families

Putting individuals and families at the centre I watch them grow Putting individuals and families at the centre

Recognising and valuing teamwork They'll learn much more Recognising and valuing teamwork

Keeping the objectives in sight

Achieving the objective