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St David's Foundation Hospice Care

Emma Saysell
Chief Executive Director of Nursing
St David's Foundation Hospice Care

The goal of palliative care is to achieve the best quality of life for patients and their families. Emma Saysell explains how St David's Foundation Hospice Care is trying to achieve this, and how their specialist nurses play a key role in providing the highest levels of care for patients

At St David's Foundation Hospice Care, we provide active holistic care of patients with advanced progressive illness. We work in partnership with primary and secondary care providers to manage pain and other symptoms, and provide psychological, social and spiritual support.
We have a team of specialist nurses who work throughout the local community. Our nurses offer advice and support to patients, families and carers from diagnosis onwards and are the first point of contact between families and St David's. In addition, they often refer patients to other St David's services such as family support team, day hospice, specialist social work and welfare rights advice, counselling and bereavement care, hospice at home or complementary therapies.

Our nurses work very closely with patients' GPs, hospital teams and district nurses to provide the highest levels of care for patients. We see community palliative care as having a central role to play in linking primary, secondary and tertiary care.
In terms of primary care provision, district nurses provide the lead role and practice nurses are often responsible for monitoring patients' conditions and may be involved in specific activities, such as the administration of hormonal medication, flushing of central lines and monitoring various blood counts.

We also recognise that practice nurses, in particular, may know a family very well before a diagnosis has even been made. In terms of the care we provide, we know that most of our patients prefer to spend their last days at home, surrounded by family and friends. In light of this, St David's Foundation Hospice Care has a long and successful track record of providing a much-needed "Hospice at Home" service, a pioneering service developed by St David's over 28 years. In fact, when our Hospice at Home service is involved, 85% of our patients achieve the aim to die at home.

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Our Hospice at Home nurses support patients by providing hands-on nursing care, 24 hours a day, seven days a week. In fact, the number of "care hours" provided by our specialist Hospice at Home service has more than quadrupled since 2002–03, with a total of 33,376 hours of care provided in 2007–08 (a 40.7% increase on the previous year). We never lose sight of the fact that our job is to help people to live with their illness, and then to die, usually, in their own homes.

Many of our patients suffer from cancer, which is increasingly becoming a chronic disease needing treatment over a longer period. In fact, more than 230,000 people in England and Wales develop cancer each year, and it accounts for a quarter of all deaths. But what we are finding increasingly is that a wider range of conditions, in addition to cancer, are in need of our services. In fact, latest figures show that 15.5% of patients referred to St David's had a noncancer diagnosis. Patients suffering from a range of conditions, including neurological problems and cardiac disease, chronic obstructive pulmonary disease (COPD), dementia and renal failure, need our support.

In addition, the elderly population is growing and patients and families are becoming more aware that palliative care should be widely available, regardless of diagnosis. The need for palliative care in our local area has soared, with figures (2007–08) showing that St David's cared for and supported a record number of patients and their families. To put that in perspective, 2,646 patients and their families/carers were cared for by our teams of community clinical nurse specialists in 2007–08. That is an increase of 6.7% on the previous year.

So what guidance is out there to help with this increasing role?
Palliative care appears in several National Service Framework agreements for noncancer conditions. In addition, there are specific guidance documents, such as the National Institute for Health and Clinical Excellence (NICE) Guidance on Improving Supportive and Palliative Care for Adults with Cancer. Also, the Liverpool Care Pathway and All Wales Care Pathway provide advice on the different aspects of care required, including comfort measures, anticipatory prescribing of medicines and discontinuation of inappropriate interventions.

A key achievement for us was to extend our out-of-hours service by establishing a seven-days-a-week bedside assessment service, which is in line with the aforementioned NICE guidance. The service ensures patients receive continued specialist service 365 days a year and complements our 24-hour Hospice at Home service.

At St David's Foundation Hospice Care, we are continually reviewing our services with both patients and professionals to make sure we are providing the highest quality care. So what have we learnt?

Key recommendations include:

  • Early referral, especially as many aspects of palliative care are applicable at the earliest stage of an illness.
  • Intervention by the palliative care team based on need.
  • Regular meetings by primary care providers to ensure consistency of patient care – we hold fortnightly multidisciplinary meetings, for example.
  • Understanding that both practice nurses and health visitors have a vital role to play in a whole-system approach to care.

We cannot stress enough the importance of ongoing education for healthcare professionals and for patients. Each year, we deliver over 20 different palliative care courses to over 200 people, covering issues such as experiencing professional grief and complementary therapies. The courses are designed to benefit different healthcare professionals, including nurses, GPs, nursing home staff and social workers.

We have also found prebereavement services, bereavement care and counselling are essential for family members. We also always bear in mind support for the carer – very often they neglect themselves when in a caring role, and the provision of respite and support groups is extremely important.

A key recommendation is that patients should be provided with a document that they can keep with them if they receive care in different places. It could include choices such as where they wish to die. We feel this would be particularly helpful in care homes, especially in light of the Mental Capacity Act 2005, which highlights the importance of patients being able and encouraged to express preferences around the type of care
they receive.

Voluntary hospices play a vital role in providing palliative and end-of-life services. We are working at the leading edge of care and treatment for patients, with all the facilities, equipment, technology and the latest complex drug treatments that allow our patients a good quality of life, plus real choice and dignity. Our nurses are highly skilled, totally professional, well-qualified and fully committed to a sometimes draining but always rewarding type of care.

St David's Specialist Nurse, Gay Stevens
Gay Stevens is not only part of the original team who founded St David's, but is also one of the first specialist palliative care nurses in Wales to qualify in supplementary prescribing. Gay's qualification means that she can prescribe a range of medicines to treat symptoms such as pain and sickness, without having to ask a doctor to make out a prescription.

She says: "This qualification means that I can prescribe medicines for patients directly, and this in turn creates a more streamlined service for them. It's important to emphasise, however, that I still work very closely with our GPs. Before any medicines can be prescribed, the GP and I produce a clinical management plan, which details which medicines I can prescribe and at what dose. The GP and I both review the plan on a regular basis, to ensure that it still meets the patient's needs. This way, the patient benefits from faster, easier access to medicines, but their condition is still closely monitored by
their doctor."

A family's view of palliative nursing care from St David's Foundation Hospice Care
Mr Phillip's mother, June, was cared for by St David's until her death:
"Words cannot express what I and my family feel we owe to the nurses of St David's Foundation who helped us care for Mum. Initially, we were reluctant for Mum to be referred, thinking that your involvement would interfere with our precious time together. How wrong we were. You became part of our family, caring for and providing us with peace of mind. Mum looked forward to your visits.
"With your professional but personal touch, you allowed a very special and proud lady to retain her pride and dignity throughout. Thank you does not seem adequate, as you will never know how special you all are to us."
Palliative care nurses at St David's Foundation Hospice Care provide:

  • General care.
  • Pressure area care.
  • Oral care.
  • Continence/toileting.
  • Moving and handling.
  • Movement aids (hoists or glide sheets).
  • Syringe drivers.
  • Symptom management.
  • Psychological support for patients and families.

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