The Long-term Conditions Alliance and National Voices merged on 17 October 2008 to create one unified umbrella charity representing service users and carers in health and social care policy-making nationwide. LTCA's final year is summarised below.
About LTCA LTCA was an alliance of over 100 national voluntary sector organisations representing the interests of people with long-term health conditions. LTCA’s primary role was to influence our society and its public services, and to strengthen member organisations so they can better help their particular communities of interest.
LTCA's influence derived from a formula that brought together a powerful combination of voices from service users, along with charity, professional and political perspectives. LTCA itself was often a catalyst for and the crucible of collaboration, but in noting our success we must give thanks to:
- our members, our many friends, and supporters for providing the substance and the strength that achieves results
- our funders, charitable and commercial, who provide the funds needed for our programmes, even though the nature of our work means that we cannot usually deliver a head-count of the beneficiaries helped
- our professional service providers
- our staff, for their dedication and hard work
2007 party conferences
LTCA continues to build relationships with the three main national political parties. We maintained our involvement with the Health Hotel, participating in two fringe events at each conference (one on commissioning with ABPI and the Eye Health Alliance; the other on the issues raised by the UK’s changing demographic profile with the Alzheimer’s Society, the Parkinson’s Disease Society, Help the Hospices and Help the Aged).In 2008, LTCA will share the chairmanship of Health Hotel with Rethink.
In addition to Health Hotel activities, Roche Pharmaceuticals sponsored an LTCA dinner at each conference, conducted under Chatham House rules. These gave participants (representatives from member organisations, local politicians, and health policy commentators) the opportunity to discuss the respective party’s health policies with a senior party representative. The success of the dinners means that they will be repeated in 2008.
LTCA: what it does, and why
- Works to achieve full implementation of care policies for people affected by long-term conditions
- Supports member organisations to develop strong voices
- Extends LTCA’s work to benefit other care service users where possible
- Strengthens the health voluntary sector’s influence on national policy making
- Promotes a wide range of sustainable high quality long-term conditions self-management programmes
- Influences the creation and content of new public policy on care to benefit people affected by long-term conditions
Choice
LTCA is concerned with the systems and services that support the fundamental choices that enable people living with long-term conditions to live life as they want. Choice means the individual’s right to decide what is best for them in managing their condition, guided and advised by professionals. Choice includes, but means more than, the ability to choose when and where to be treated. It covers what treatment to have and how, and should extend to other services including social care.Facilitating greater choice is a core element of current government policy and is being implemented through a range of ongoing initiatives. While LTCA supports the development of choice in the provision and availability of services and the policy initiatives that will deliver it, we would wish to see choice further extended, including a move towards more personalised services. LTCA also believes that supporting patient choice will help to improve the quality of services.
Engagement
Engagement is the means and methods by which individuals living with long-term conditions are enabled to participate fully and effectively in the processes by which their care is provided. ‘Engagement’ relates to individuals, whereas ‘involvement’ relates to groups and communities. Policies and services for people living with long-term conditions should be configured to facilitate and encourage engagement, both by the recipients and the providers of care. LTCA believes that services which support people with long-term conditions should be provided in a manner that encourages and supports effective engagement by both users and providers.
LTCA’s Professional Partners
British Association for Counselling and Psychotherapy
British Association of Art Therapists
British Association of Social Workers British Society of Rehabilitation Medicine
British Society for Rheumatology
Chartered Society of Physiotherapy
British Pain Society
Education for Health
General Practice Airways Group
Royal College of Anaesthetists
Royal College of Nursing
Key successes in 2007
2007 was a year in which LTCA consolidated the gains it had made previously and built momentum for future developments. Having previously reviewed our strategic objectives and restructured our income, in 2007 we:
- established our new income structures, achieving recurring income to cover most of the charity’s core activities, rather than relying on project-based grants
- secured contract income to support new developments aligned with our strategic objectives
- remained fully engaged with the latest developments in health and social care policy, ensuring these are all focused on long-term conditions despite changes in political leadership
- represented the interests of service users in national developments in choice, GP pay (QOF) and systems for made considerable progress towards achieving a new settlement with Government, so that National Voices can become a legitimate and well-resourced mechanism for service users’ voices.
Empowerment
Empowerment means having the appropriate resources, mechanisms and support to enable individuals to make well-informed choices.
Empowerment enables people living with long-term conditions to take advantage of the choices that are on offer and facilitates self-determination and self-management. Empowerment is an underlying principle in current government policy.LTCA wants people with long-term conditions to be offered resources and mechanisms to enable them to make well-informed choices and benefit from the services that are available. This includes the provision of high quality information, together with appropriate support to enable people to interpret this information, so that they feel in control and able to make informed decisions.
Inequalities
Inequalities are unfair disadvantages that result from factors over which people have little or no control, such as health status, socio-economic status, ethnic origin, and geography.
Many people living with long-term conditions have their life opportunities limited by their condition. Having a long-term condition means that you are more likely to be disadvantaged in other ways.
People with rarer conditions are also disadvantaged by limited awareness amongst health professionals and inadequate service provision. Reducing health inequalities is a stated government commitment.
LTCA believes that health and social services should be designed to minimise the disadvantage experienced by people living with long-term conditions. However, improvements and advances in care that have the potential to benefit people living with long-term conditions should not be held back because they are not available to all.
LTCA believes that people with long-term conditions should be treated as equal partners in decisions that affect them. We are concerned to ensure that a move towards local commissioning does not create differences in the provision and funding of services for people with long-term conditions.
LTCA and Involvement
Involvement is the means and methods by which groups/communities affected by long-term conditions participate in the design, monitoring and evaluation of the provision of care. The purpose of involvement is to influence improved quality and availability of services.
Individuals, communities and representative bodies should be a core element in the creation, development, delivery and monitoring of services and the policy frameworks that surround them. Patient and public involvement is a stated government policy objective, and LTCA is a partner in the NHS National Centre for Involvement.
LTCA believes services that support people with long-term conditions should be developed, managed and evaluated in a manner that facilitates effective user involvement. LTCA supports user involvement where people with long-term conditions are involved as genuine partners through all stages of the policy-making and care planning and delivery process. However, we are opposed to tokenistic user involvement that does not result in real change.
Quality
Quality means having services that are based on the best evidence, operate to high standards and provide the best outcomes. Complex to measure, it relates both to people’s aspirations and objective international comparators. People living with long-term conditions need high quality services to get the best outcomes and optimise their quality of life.
LTCA supports the pursuit of continuous improvement in healthcare standards. We believe the quality of NHS care is highly variable, with many services operating at unacceptably low standards.
Access
Access means the way providers enable people to benefit from their services, both raising awareness of what is available and enabling people to obtain and use the services they need.
Long-term conditions can limit access while service design sometimes assumes people do not have jobs or commitments.
LTCA believes service design and delivery need to maximise access for people with long-term conditions, support them in managing their lives effectively and take account of their desire to lead active lives, participate in the workplace and sustain family/caring responsibilities.
Cost
Cost means the financial burden on service users. It can be an obstacle to accessing services. High-quality services can be expensive provide and indirectly impose financial burdens on users.
LTCA believes services for people with long-term conditions should be provided in a manner that does not adversely affect their economic situation.
Recognising that people have differing abilities to work, LTCA backs welfare reform that enables people to access statutory benefits more easily and supports those who wish to return to work.
