Memorandum by Sue Ryder Care (PC 16)
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
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
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
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 1999-2000Hospice
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
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
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
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
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
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.
11.1 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
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
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
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.