North Lincolnshire PCT serves a population of approximately 157,000 and is part of the Humber & Yorkshire Coast Cancer Network. Within North Lincolnshire there are 22 GP practices, 1 adult hospice and 1 Acute Trust supported by 5 Macmillan Clinical Nurse Specialists—2 in the acute trust and 3 in the community.

Choice—The provision of Palliative Care Services in respect of location, timeliness and support to people in their own homes:

—  Palliative care services are provided by the PCT, the Acute Trust and an independent Hospice

—  District Nurses provide generalist palliative care as do General Practitioners and are both supported by the Macmillan Clinical Nurse Specialist (CNS).

—  Access to Macmillan Clinical Nurse Specialists is mainly via General Practitioners and the acute trust; the method of referral varies across our network. There is evidence to suggest that formal referral guidelines need to be developed to avoid delayed, duplicated or missed referrals.

—  In addition to the above mentioned professionals, patients/carers/family are supported by the PCT Home Healthcare Team and Marie Curie services

—  The Macmillan CNSs are able to provide some level of support in respect of social/psychosocial issues but the level of advice given is subject to the depth of available knowledge and the amount of time available to spend with the patients/carers/family

—  Social Services provide some level of intervention but this does not replace the need for a palliative care social worker

—  The hospice provides specialist advice to patients/carers and family members both as part of the day-care and in-patient facility. It provides symptom control combined with other therapies as well as brief respite.

—  A recent Macmillan survey of local GP practices confirmed that some practices recorded the patients' preferred place of death. However it was noticed that patients and relatives were subject to changing their minds as situations changed, eg deterioration of illness, family unit breakdown, inability to cope.

—  In order to facilitate patient/family/carer choice when this relates to remaining at home, support needs to be virtually instantaneous as this category of patient does not have the luxury of time to wait for bureaucratic processes to take due course

—  24hr District Nursing Service is not available in North Lincolnshire, Provision of this would go some way to providing the support and confidence patients/carers/family need in order to remain at home.

—  Work in respect of anticipatory care is ongoing eg hand-over-forms for out of hours staff but more GP education is needed.

—  Time and resources (financial/professional) are limited in financially constrained organisations.

—  The discharge of patients from hospital who wish to go home or to the hospice for the last days of life is hindered by the lack of flexibility of transport arrangements.

—  A group will be convened to discuss and explore possibilities for initiating a rapid discharge policy for terminally ill patients who wish to be transferred from hospital to home/hospice for the last days of their life.

—  The ambulance service does not see terminal patients as a priority to discharge as they are "secure" in hospital and therefore the priority is given to attending someone needing to be admitted to hospital.

Equity—Distribution of provision, geographical and between different age groups:

—  Cancer patients have the cancer plan, NICE guidance etc,. Other palliative patients including those with Motor Neurone Disease, cardiac failure, chronic respiratory disease and renal failure and others do not,. This can lead to potential inequalities in relation to patients requiring palliative care but are not suffering from cancer

—  North Lincolnshire has access to Children's hospices in neighbouring areas.

—  North Lincolnshire covers a wide geographical rural area which can impact on patients'/family/carers' access to services.

—  Consideration needs to be given to staffing levels in the above circumstances. The distance/time travelled should inform staffing numbers, which should therefore not be formula based.

Communication—between clinicians and patients; The balance between people's wishes and those of Carers, Families and Friends:

—  Local education programmes are addressing the need for better communications between all parties

The needs of different cultures and beliefs:

—  A local assessment of ethnicity has been undertaken locally and will inform future service planning

Support Services—including Domiciliary Support and Personal Care:

—  The limitation of resources (financial and manpower) impact greatly on the ability to achieve a timely and robust service, therefore the provision of appropriate and timely support services requires further investment in relation to both personnel and finance.

—  Patients can undergo numerous assessments, which can delay the actual delivery of services required. Need to develop single assessment mechanisms.

Quality—of services and quality assurance:

—  The local hospice is regarded highly for the services it provides

Needs—of different age groups and different service users:

—  Where possible local services take cognisance of the differing needs of the various age groups and multi cultural community we live in.

Governance—of charitable providers, standards of organisation, links to the NHS and specialist services:

—  Comply with and conform to recommendations by CHI, National Care Standards, Cancer Network Peer Review process.

—  Local independent hospice has well established links with NHS health organisations.

Workforce—Supply and retention of staff and adequacy of training programmes:

—  National shortage of consultants in palliative medicine impacts on ability to recruit locally.

—  Unattractive to newly qualified consultants to be working outside of an established professional centre.

—  Consideration should be given to the accreditation of professional staff who have provided "long" service in palliative medicine (in line with accreditation process up to 1997).

—  Nurses are taking on more senior roles with added responsibility, which adds to the shortfall in the already depressed "hands-on" nursing service.

Financing—including the adequacy of NHS and charitable funding and their respective contributions and boundaries:

—  The NHS should provide funding to charitable hospices equal to the level of costs that would be incurred by the NHS, should the hospice not exist.

—  Core Funding (clinical costs/admin/cleaning/general wear-and tear) should be considered for hospices as baseline funding is being eroded—percentage uplifts do not equal staffing cost pressures.

—  Allocations should be made to PCTs in a timely way to enable the appropriate planning of services.

—  The release of the Specialist Palliative Care Funding could have been more timely—to coincide with the definitive NICE Guidance for Supportive and Palliative Care.

Government Policy—the impact and effectiveness of National Service Frameworks, the Cancer Plan and NICE Recommendation

—  The delay in releasing the definitive NICE Guidance on Supportive and Palliative care has not been helpful to the recent formal planning process (LDP refresh).

—  The NSFs highlight the need to provide Palliative Care services to other patient groups.

Recommendations to the Government:

—  Review hospice funding allocations to include core services.

—  Planning can only be truly informed by the full funding envelope being available at the commencement of the planning round—no surprises mid-year with additional dictates/targets with no additional resources because "its included in the baseline".

—  Address the shortfall of consultants in palliative medicine