INTRODUCTION

  Sue Ryder Care, founded over fifty years ago as The Sue Ryder Foundation, is today unique amongst voluntary sector providers. Sue Ryder Care provides care for adults with a complex range of needs in hospice, residential, day care facilities and the domiciliary environment. Of the Care Centres operational within the United Kingdom, six currently provide specialist palliative care services and a further ten support the longer term needs of people with neurological deficit disorders. Sue Ryder Care is the second largest voluntary sector provider of in-patient specialist palliative care services within the United Kingdom.

  Within the context of the WHO definition of palliative care, Sue Ryder Care exemplifies a commitment to the provision of palliative care whilst supporting the needs of local communities.

  1.  Issues of choice in the provision, location and timeliness of palliative care services, including support to people in their own homes.

  1.1  Across the Sue Ryder Care organisation, our healthcare teams are actively involved within their Cancer Networks and with their local statutory commissioners to sustain and develop services for their local populations. Our hospices aim to provide a holistic approach to care, seeking to address the needs of individuals and providing a range of services or access to a range of services within the hospice environment. Sue Ryder Care hospices support patient choice in a variety of ways by providing access to in-patient and day care services, including complementary therapies and by developing partnerships with other provider agencies to enhance the range of services available within communities.

  1.2  In line with other voluntary sector providers, Sue Ryder Care has relied on significant contributions from volunteers and fundraising activities in order to sustain and develop services. These contributions cannot be underestimated and whilst these donations have allowed growth and development within individual hospices, the statutory funding secured by Sue Ryder Care to support the provision of specialist palliative care remains well below fifty per cent of the care costs.

  1.3  The draft NICE guidance on Supportive and Palliative Care for Adults with Cancer recognises that patients should be able to make choices about where they receive care but does not determine whether or not the choice for hospice care would be met through public expenditure.

  1.4  Our hospices currently provide services for in-patients and day care services, including an increasing range of out-patient treatments at care centres. In addition complementary therapies, activities, family support and bereavement services and spiritual support are integral to the care available at each of our centres.

  2.  Equity in the distribution of provision, both geographical and between different age groups.

  2.1  Sue Ryder Care has developed positive commissioning arrangements with statutory partners within its localities. It is recognised that local decision making about priorities rests with the Primary Care Trusts but that the nationally determined goal has been set within the NICE guidance.

  2.2  Assuming that Cancer Networks will be moving forward and supporting locality plans at differing rates, PCTs may determine to spend more on palliative care dependent upon the priority ranking within that locality and therefore equity cannot be guaranteed.

  2.3  Sue Ryder Care recognises the importance of focussing, with service commissioners on the catchment areas of services rather than on the buildings from which services are currently provided and is seeking to enhance the range of services that can be offered in line with local service development plans and the available funding streams. Sue Ryder Care is increasingly developing a role as a preferred provider of services within local care communities.

  3.  Communication between clinicians and patients; the balance between people's wishes and those of carers, families and friends; the extent to which service provision meets the needs of different cultures and beliefs.

  3.1  Patients referred for a range of palliative care within the different geographical catchment areas can access services via members of the multi-disciplinary teams. Local Cancer Networks determine the actual process but the majority of referrals will be through the NHS route either through primary care or acute service professionals.

  3.2  Developing sustainable links between referrer and the hospice are paramount in securing the best possible outcome for the patient. Clinical staff working at hospice level develop networks within their localities through formalised job plans, audit, training and education and service development initiatives.

  3.2  NICE guidance identifies the appropriate levels of clinical and other professional staff who should be involved in order to provide an effective and appropriate service. Sue Ryder Care, in collaboration with other agencies and commissioners either meets or is moving towards achieving core service profiles identified within the NICE guidance to meet the requirements for specialist palliative care services.

  3.3  Supporting the wishes of patients and their carers and families is viewed as integral to the ethos of palliative care and the provision of care within the hospice environment. Developing the relationship between professionals and service users is key to a successful outcome for the patient and his family. Dilemmas occur where there is insufficient provision in terms of availability and or specialisation within both hospice and community settings to support the patient and his carers.

  3.4  Sue Ryder Care aims to meet the cultural and spiritual needs of all service users. Dependent upon location and therefore the ethnicity of any given population, care centres have developed links with local communities in order to support the needs of patients and their families.

  4.0  Support services including domiciliary support and personal care.

  4.1  Palliative care services in the community setting are currently limited within Sue Ryder Care to the provision of specialist advice and training (in conjunction with other agencies), domiciliary assessment and consultant domiciliary visits.

  4.2  Engaging with partners in local settings to support care in the community can lead to delayed discharge for palliative care patients. The reason is primarily lack of service providers with the necessary skills to accommodate patients, often with complex needs, in their home environments. There is also an issue of appropriate resourcing in terms of the provision of equipment and support for domiciliary carers.

  4.4  Concern has been expressed as to how the new GP contract will affect out of hours provisions, especially with regard to the needs of patients with complex needs where continuity and communication are of paramount importance in securing the desirable outcome for the patient at any time in his illness but particularly with end stage disease.

  4.3  Local commissioners are exploring ways in which care in the community can be facilitated and provided and Sue Ryder Care is at an early stage of discussion with some commissioners and partners in seeking solutions to this dilemma.

  4.4  The Minimum Data Set (MDS) survey 1999-2000—Hospice Information, revealed that, of the services responding, 26% (25,100 patients) were living alone. The implications, if true patient choice were to be implemented as a right rather than as a desirable standard would not be sustainable within current provisions.

  5.0  Quality of services and quality assurance.

  5.1  The Care Standards Act 2000 required the National Care Standards Commission to inspect hospices against a range of service regulations in order to ensure that the range and quality of services provided were operating within the regulatory framework. This responsibility will transfer from April 2004 to the Commission for Healthcare Audit and Inspection.

  5.2  Inspections, valuable though they may be in assisting managers and organisations to focus on achievements and improve the quality of outputs and outcomes, do make significant demands on clinical and administrative staff time. In order to support external validation, support the development of and improve the quality of internal audit, Sue Ryder Care initiated a clinical governance programme with hospice managers to develop policies, procedures, audit and training programmes. Further development of clinical services within Sue Ryder Care will consolidate and improve this approach.

  5.3  There is a cost associated with the process of inspection, not only in terms of resources at a local level to support the inspection (including CRB checks) but also the cost of compliance as determined by any requirements or recommendations that the commission make.

  5.4  Fee levels and compliance issues, particularly those associated with maintaining services from older properties can be significant and impact dramatically on a voluntary sector provider's revenues. Given that the majority of palliative care is provided by the voluntary sector, voluntary organisations are in effect fundraising to support compliance with regulations in order to provide services for patients that cannot yet be sustained within the statutory provisions.

  5.5  The resource implications of the NICE (Draft Guidance October 2003) will raise concerns with regard to the availability, retention, on going education and staff costs associated with compliance to these emergent standards.

  6.0  Extent to which service meets the needs of different age groups and different service users.

  6.1  Sue Ryder Care supports the palliative care needs of service users through the specialist palliative care hospices and day care facilities. The services are provided for adults and referrals to any of the services are made through members of the multi-disciplinary team.

  6.2  A range of therapies and activities are accessible within each hospice and day hospice facility. These include symptom control, creative therapy, complementary therapy, occupational and physiotherapy, spiritual care, social worker and family support. Family support services are in place at all the hospices. Part of the remit of this specialist bereavement service is to enable parents to identify and manage loss within the family network, especially with their children. Family support extends to any member of the patient's "family" in the widest sense.

  6.3  Our hospices aim to support patients at different stages in their illness and this includes episodes of respite care. The aim of respite care is to support both carer needs (this may be required for carer hospitalisation or holiday) and also provides an opportunity for a healthcare review and interventions if required for the individual patient. Our ability to provide respite care is determined by the availability of in-patient beds and day care placements as both aspects of respite care can be provided.

  6.4  The value of respite care as part of a continuum of care within specialist palliative care provision should not be underestimated. These patients have complex needs and require access to a range of clinical interventions and support services as their conditions change. Intervention at an early stage can prevent an acute hospital admission and enables the patient to remain closer to the community.

  7.0  Governance of charitable providers, standards of organisation, links to the NHS and specialist services.

  7.1  Independent hospices are rigorously inspected and must comply with regulations in order to operate. In addition they must achieve the standards identified by the NCSC. This includes compliance with fire regulations, food handling and hygiene, health and safety and mandatory training. In addition the charity must sustain a corporate governance programme and ensure financial probity in line with the Charities Commission requirements.

  7.2  A clinical governance programme has been established within Sue Ryder Care in order to evidence the standards expected through its operations. The programme is subject to evaluation and audit on a yearly cycle and is responsive to local needs as determined by the NCSC and individual hospice requirements.

  7.3  Training and development programmes are in place throughout Sue Ryder Care. The programmes are locally led under the umbrella of the education and training strategy aimed at supporting the needs of all nursing staff. The programme aims to meet NCSC requirements for unqualified staff and specifically at local level, engaging with NHS educational facilities to promote learning opportunities for trained staff.

  7.4  Consultant medical staff has established links within the local provider networks to support their own expertise in clinical practise, enhance working relationships, influence the debate on care pathways for palliative care patients and contribute their professional skills in the field of palliative care medicine to their local acute trusts and primary care colleagues.

  8.  Workforce issues including the supply and retention of staff and the quality and adequacy of training programmes.

  8.1  In common with other providers Sue Ryder Care faces the challenges of recruitment and retention of suitably qualified staff working in a specialist environment. In addition, the location of the some of the hospices inhibits successful recruitment due to escalating house prices and the cost of living in certain areas. Pay must also reflect NHS rates and allowances in order to attract staff in a competitive market.

  8.2  Hospices retaining consultant medical supervision are eligible to participate in the training programmes for Specialist Registrars, Senior House Officers and General Practitioner schemes. However the shortage of candidates to fill vacancies, the impact of retirement and the drop out rate amongst trainees is likely to affect the integrity of services over time and the ability of individual hospices to sustain specialist care provision. We recognise that we are competing for scarce resources and work with statutory and voluntary providers to secure the best possible options to sustain and develop services.

  8.3  There is a need to support training initiatives particularly for specialist healthcare professionals in the field of palliative care. This applies across disciplines. Training costs within the voluntary sector are funded through the hospice revenues (apart from the rotation schemes) and the investment may not always be realised as professionals seek improved job satisfaction, rates of pay, better working conditions or further training opportunities that the voluntary sector, in spite of the investment already made cannot support to the greater extent.

  8.5  The impact of "Agenda for Change" has yet to be fully realised within Sue Ryder Care but the cost implications of initiatives such as the European Working Time Regulations and the implications of the new consultant contract are issues that the organisation as a whole is continuing to address. Cost recovery can only be met with statutory partners through service agreements that support a workforce

  9.  Financing, including the adequacy of NHS and charitable funding and their respective contributions and boundaries.

  9.1  The NHS now accepts that palliative care should be recognised as core service and that voluntary hospices should therefore receive funding for the services they provide as identified in The Cancer Plan 2000. The reality is that Sue Ryder Care hospices receive only a proportion of their revenues through the statutory route and the percentage income varies across the country. There is a lack of clarity from PCTs about which services are being commissioned and at what levels.

  9.2  The Charity Commission has firm advice about the discretionary powers of trustees and it is now clearly not a sustainable proposition those charities should continue to fund shortfall in public service provision through its own resources for an indefinite period. What should be necessary is for the NHS to identify the level of service provision required and accept the responsibility for the cost of provision to that level. The charity may then choose to support or supplement what the public body provides.

  9.3  The level of statutory funding available for palliative care services is clearly insufficient to meet service demands and therefore charities continue to fund the shortfall in order to sustain services in their communities. Sue Ryder Care has to achieve a target of £4.9M during 2004 in order to sustain its level of operations.

  9.4  The National Partnership Group was established to ensure that the monies identified and pledged within the Cancer Plan 2000 were targeted at services as intended and to develop a framework to recognise and support the contribution from specialist palliative care services.

  10.  The impact and effectiveness of Government policy including the National Service Frameworks, the Cancer Plan and NICE recommendations.

  10.1  Government policy has determined the direction of travel for commissioner and provider organisations alike. It is not yet clear if and how a strategy for palliative care services will emerge as the next step.

  10.2  Palliative care does not yet appear to have the national credibility that other forms of cancer care have achieved and there does not appear to be a focus on palliative care for patients with non-malignant disease and yet end stage support for sufferers of neurological, cardiac, respiratory and renal conditions must be included.

  10.3  The draft NICE guidance identifies requirements for supportive and specialist palliative care services for adults but the guidance is not developed enough to explain what these areas of care actually are and leave much to interpretation and conjecture. What is not yet determined is the relationship between continuing care and palliative care and how service can be commissioned for patients requiring access to services in either a supportive or specialist setting.

  10.4  Impacts from the Delayed Discharge Bill are yet to be evidenced but hospices are already indicating concerns and constraints on patient movements as a result.

  11.  Recommendations:

  11.1  Collaboration between partner agencies has already demonstrated results in terms of new initiatives and collaborative working practices. Consideration should be given to the ways in which partnerships can be enhanced and legitimised through co-ordinating and:

—  Improving availability and access to social care support in the patient's own home

—  Improving the range of services available to patients and their carers such as respite and intermediate care

—  Developing the range of home care services with personnel with the diversity of skills required to support patients and carers in the patient's own home

—  Improving the interface between agencies and ensuring that all providers are aware of the services available within a locality and the referral criteria.

  11.2  A national overview of what constitutes a core service would enable the development of future strategies. The development of core standards from the NICE guidance may determine the service standards that can be commissioned through existing arrangements as a minimum level of service. Consideration should be given to the appointment of a Minister with special responsibility for palliative care services in order to integrate planning mechanisms and enhance the profile for these services.

  11.3  Patient and carer choice cannot be fully realised within the current service provisions. Consideration should be given both to the availability and training of staff to enable them to provide palliative care and specialist palliative care in the most appropriate environment for the patient.

  11.4  In order to maximise the potential of care in the community setting for health and social care providers, consideration should be given to the resourcing of care schemes that are pertinent to the needs of local communities. There is a need to support hospice at home schemes, rapid response teams, discharge support teams, extend the roles of the multidisciplinary team and support and train volunteers. There is also a need to provide family support to carers coping in the community. It would be desirable to integrate service providers through joint care planning opportunities and enable resource transfers between agencies.

  11.5  The relationship between the Commission for Healthcare Audit and Inspection and NICE needs to be clarified with regard to the development of standards and the inspection of services. The standards arising as a result of the NICE guidance need to be considered in relation to the status of the standard as a minimum standard against which all providers will be audited or as an NHS standard.

  11.6  Respite care within specialist and generalist palliative care services, if resourced by specialist staff can result in improvements in the quality of life experiences for both patient and carer. Recognition of the importance of respite care and a flexible approach to provision within commissioning frameworks would be desirable in supporting the wishes of patients and carers and meeting their needs.

  11.7  The inspection and standards required for compliance within the terms of reference for NHS and charitable providers are dissimilar and consideration should be given to the establishment of standards that are congruent across provider agencies.

  11.8  Support and development for education of the future workforce will be key to sustaining and improving palliative care services now and in the future. Consideration should be given to the appropriate funding and resourcing of programmes that can support the workforce of the future. Equity of provision is challenged by the lack of suitably skilled personnel.

  NICE guidance recommends that each specialist palliative care team should be led by a consultant. We know that not enough consultants are available to fill the vacancies and our existing consultants struggle with increasing case loads and competing demands upon their time. Therefore it might be appropriate to consider the role of the consultant in specialist palliative care in conjunction with the roles of other specialist practitioners to assess whether or not other members of the multi-disciplinary team could undertake part of the current consultant remit within their functions.

  11.9  Consideration should be given to the development of a framework for commissioning services from the voluntary sector by PCTs. In line with Treasury guidance, the commissioner is required to meet the full costs incurred by voluntary organisations in providing public services by 2006. This represents a significant change in commissioning arrangements.

  11.10  Consideration should be given to unifying the responsibility for palliative care services for all disease groups (adults and children) within one ministerial portfolio.

February 2004