Select Committee on Health Written Evidence


Memorandum by the Royal College of Nursing (PC 62)


  1.1  With a membership of over 360,000 registered nurses, midwives, health visitors, nursing students, health care assistants and nurse cadets, the Royal College of Nursing (RCN) is the voice of nursing across the UK and the largest professional union of nursing staff in the world. RCN members work in a variety of hospital and community settings in the NHS and the independent sector. The RCN promotes patient and nursing interests on a wide range of issues by working closely with Government, the UK parliaments and other national and European political institutions, trade unions, professional bodies and voluntary organisations.

  1.2  As well as specialist palliative care nurses and paediatric palliative care nurses, nurses in all settings and district nurses in particular play a vital role in co-ordinating services and providing care to the dying. We have focused on three main themes related to the provision of palliative care which we hope will be useful to the Committee. These are:

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

    —  Workforce issues, including the supply and retention of staff and the adequacy of training programmes.

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


  2.1  Patients do not always have adequate choice in palliative care. Differing provision across the UK has created a system where the level of palliative care received is often dependent on location. Nurses want to ensure that all their patients receive the appropriate high standard of care wherever they live.

  2.2  Many palliative care services originated from local voluntary organisations and voluntary hospices continue to provide around 75% of inpatient palliative care services. Although this model served to stimulate provision of palliative care services, provision is sporadic and frequently dependent on the fundraising capabilities of the local communities. Further, charitable funding is directed at the patient group for or by whom funds are raised, and many adult palliative care services cater only to cancer care. For example, studies into palliative care for patients with chronic obstructive airways disease (COPD) have shown that COPD patients are often stranded at home with little support[24]. The RCN's Palliative Nurses Forum has been active in lobbying for increased services for patients with a non-cancer diagnosis.

  2.3  Community palliative care nursing teams are not universally in place across the UK and often general care is given to patients rather than specialised palliative care. This leads to increased workload for district community nursing teams, often leading to burnout for staff who are not adequately trained or supported in dealing with specific palliative care issues.

  2.4  Because of this shortage of specialist teams, discharge of patients is often hampered as processes are not in place to enable patients to go home. This leads to increased pressure on primary healthcare services, but more importantly patients do not have the appropriate care or support they require at this time in their lives. Frequently the choices for home care are limited, and patients are often moved into residential care, which can cause emotional distress to patient and family.

  2.5  Paediatric palliative care is special in several ways:

    —  The number of children dying is small compared with adults.

    —  Many of the conditions are extremely rare with diagnoses specific to children.

    —  Time scale of illness different is to adults—palliative care may last a few days or months but may extend over many years into early adulthood.

    —  Many of the illnesses may be familial—so more than one child in a family may be affected.

    —  Care embraces the whole family—parents and siblings carry a heavy responsibility for personal and nursing care.

    —  Provision of play and education is essential for children who are sick.

  2.6  As with adult palliative care services, there is variable provision across the country for paediatric palliative care. Specialist services for children and young people needs to be a specific focus of commissioning. Clear mechanisms for accessibility and funding of medications, medical and nursing supplies, equipment, aids, and respite care should be identified, as families are often caught up in bureaucratic disagreements between health, education and social services about funding.

  2.7  Knowledge of the epidemiology of children with life limiting conditions is improving, but sound data on morbidity is still not available. Current information suggests that, in a district with 50,000 children, eight are likely to die in a year as a result of a progressive condition for which palliative care is appropriate. Commissioners could work with local providers to establish a local database of these children and young people.

  2.8  Our recommended model for children and young people's palliative care services would be a locally based multi-disciplinary team with ready access to a children's hospice, and to specialist palliative care advice for families and professionals when needed. Most of the day to day care should be provided in the community, with specialist children's community teams working in conjunction with primary care team, social services and education. Key workers are needed to ensure that provision is planned, co-ordinated and appropriate. Families should have access to a range of flexible respite care, including respite at home, in a children's hospice and through social services. Some children's hospices currently have extremely restrictive criteria (such as the expected life span of the child) meaning that some families cannot gain access.


  3.1  Whilst palliative care is a popular area of nursing, the work is intensive with high levels of stress and burnout in staff. To guard against this, the RCN is calling for managers to ensure appropriate support is made available to all staff. Some nurses choose to have breaks from palliative care and this should be facilitated so that they feel encouraged to return to the practice at later date.

  3.2  Specialist palliative care nurses are trained in pain and symptom control and to give emotional support to patients and their carers. A palliative care nurse will be a registered nurse with a post-registration palliative care diploma. A palliative care nurse specialist will have a post-registration specialist degree.

  3.3  Agenda for Change and Career and Competency Frameworks could encourage staff to develop their skills and become specialist practitioners, taking on skilled roles in palliative care nursing. Skilled staff who are appropriately supported by management and receive financial rewards for their skills remain longer in these types of nursing posts.

  3.4  Career progression for palliative care nursing staff can be difficult. The RCN is developing a careers and competency framework which is linked to the Knowledge and Skills Framework under Agenda for Change. This will promote career pathways and develop nurses at all levels to be skilled practitioners in palliative care.

  3.5  In addition to specialist teams, the RCN Cancer Nursing Framework launched in 2003 calls for nurses working in all primary care settings to have specific training on cancer and palliative care. This would allow for improved and rapid referral systems to be in place and lead to a greater workforce of skilled primary care nurses with expertise in palliative care.

  3.6  Children's nurses also need to have appropriate post-registration education and training. There is a need to establish greater numbers of specific courses that are focused on children and young people, and on families.

  3.7  Most palliative care nurses work in the independent and voluntary sectors. As NHS nurses see their pay and career opportunities improve under Agenda for Change, independent sector employers may need to revise terms and conditions for nurses to remain competitive.


  4.1  The RCN Palliative Care forum has been very involved in formulating the NICE guidelines on palliative care.

  4.2  Recent care blueprints and especially the National Cancer Plan have had a positive influence on the planning and provision of palliative care services. However while some funding has been made available it has not always been felt on the front line of care. It is essential that new money is properly disseminated to the parts of the service where it can make a real difference to patient care.

February 2004

24   Cotton MM et al (2002) Early discharge for patients with exacerbations of chronic obstructive pulmonary disease: a randomised controlled trial Thorax 55: 902-906. Back

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