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Newsletter No 1 - Spring 1999
Patient Held Records
Work is currently in progress to evaluate the benefits or otherwise of patient held records in palliative and cancer care. Several types have been piloted from a very simple blank notebook, which patients can use in an individual fashion, to highly structured colour coded records. A conference in October brought together interested practitioners to learn about and discuss recent developments and research in PHRs. Potential advantages included more rapid communication between services; a record of what the patient has been told and understood; a useful source of information in out of hours calls; and a diary and record of treatment valued by patients and their relatives. Disadvantages included duplication of records; increased time burden on health professionals and therefore often not filled in; and not suited to, or welcomed by, all patients. The National Patient Held Records Project is currently under way in the central belt of Scotland to determine the value for cancer patients in Scotland of the patient held record that was devised and piloted in the Newcastle region. It is recommended that further developments on PHRs should wait until current studies are completed and published. A conference report is available from the Scottish Partnership Agency.
A meeting to discuss the draft guidelines on “The Control of Pain in Patients with Cancer” took place in September. The final guidelines are due to be published in autumn of this year.
At a national meeting
of Macmillan GP Facilitators in November, areas of difficulty in providing
high quality out of hours palliative care were debated. The situation
in the Borders is currently being evaluated with a view to developing
improvements in the following:
- availability of good quality information about such patients for duty
doctors out of hours
- ready access to syringe drivers, sufficient quantities of relevant drugs
and appropriate information on these if required
- access to 24 hour specialist advice for difficult problems
Palliative Care Steering Group
The Borders Palliative Care Steering Group has been re-established. Membership includes representatives from Social Work, both Trusts, the Health Board and Primary Care. The Group will be responsible for overseeing the development of palliative care in the Borders.
Macmillan nurse Pat McMahon graduated with an MSc in Cancer Nursing in December 1998. Pat completed the work for the degree during day release and in her own time over a period of 2 years while continuing with her normal job. Although it involved a considerable amount of work, she feels that her knowledge and skills have certainly benefited from it. Pat is to be congratulated on her achievement
Dr Paul Cormie, GP in Stow, has been appointed as Macmillan GP Facilitator in the Borders. It is a three-year post entirely funded by Macmillan Cancer Relief. The role of the facilitator is twofold: 1. Educational - assessing and addressing educational needs and preferences in primary care 2. Development of palliative care - identification of ways to help health professionals improve palliative care services Practices will shortly be receiving a brief questionnaire from Paul to seek their views on the above topics and this will be followed up by visits to each practice. An audit of palliative care in community hospitals in the Borders has been completed (copies of the report are available from Paul) and the findings have been considered by the Community Hospital Strategic Planning Group with regard to future developments. Ways of improving palliative care provision out of hours are currently being examined and developed. The newsletter will be published each quarter with news and educational items for circulation amongst doctors, nurses and PAMs involved in palliative care.
During the month of February, the oncology and palliative care nurses have run 3 study afternoons at the BGH for the community and hospital based nursing staff. The three afternoons have covered the three common cancers (lung, colorectal and breast) as well as other issues around cancer care. We hope to update you more on these afternoons in a following newsletter.
New Health and Social Work Agreement
Health and Social Work within the Borders have reached agreement over working together to fulfil their respective responsibilities for palliative care. Guidelines have been produced to help staff from the different agencies work together in a "seamless" manner. The overriding principles are that the individual's wishes must be the first priority, and that arrangements should be made as speedily as possible.
The agreement outlines that Borders Health Board accepts its responsibility for fully funding specialist palliative care in whatever setting, and non-specialist palliative care for those who are expected to die in the very near future. Scottish Borders Council will continue to fund a community care package, in place prior to the diagnosis, requiring additional palliative care. People in receipt of care at home who come within the guidelines (those requiring palliative care who are likely to die within 6 months) will be exempted by Scottish Borders Council from charges for their care at home.
The reformed Palliative Care Steering Group, with representatives from all the statutory agencies, will monitor the effectiveness of the agreement. Anyone wishing a copy of the "Agreed Responsibilities and Protocols for Providing Palliative Care Services" should contact Lorna Paterson at the Health Board.
Borders Palliative Care Team
The aim of the Palliative Care Team is to attain the optimum quality of life for those referred to the service and to support all concerned through an incurable illness. The patient does not have to be imminently terminal and the team are pleased to consider referrals for conditions other than cancer.
Working in conjunction with existing staff in all settings, patients can be seen at any point in their illness when pain or symptom control is a problem, when specialised palliative care is appropriate or when extra psychological or general support is needed for any family member or carer. Advice on statutory services and allowances, and direction towards additional grants or organisations is offered. Bereavement support is also available.
A lymphoedema clinic has been established at the Borders General Hospital with maintenance treatment provided in the community. As we are eager to share information, knowledge and support with colleagues, a wide range of formal and informal educational sessions are offered.
The Palliative Care Team consists of Dr. James Rodgers, Consultant in Palliative Medicine, Elaine Peace who works in the Borders General Hospital and the community areas of Kelso and Jedburgh, Patricia McMahon whose area stretches from the A7 eastwards, and Christine Gray who covers west of the A7, so extending the service across the whole of the Borders Health Board area. Alison Hughes is our secretary based in the Borders General Hospital.
The various members of the Team can be contacted by telephoning: Borders General Hospital 01896 754333 Ext 1060 Direct line 01896 662257. When no one is available in the office, messages can be left on the answerphone
Oncology Nursing Service – Borders General Hospital
There are two oncology nurses based at the Borders General Hospital, Sue Cruickshank and Judith Smith. The remit of the Oncology Nursing team was to develop and implement a service which provided cancer patients with the support and information from diagnosis, and help guide them and their family through the often complicated and bewildering treatment plan. We see any new patient referred to us but in line with the HIP and TIP our focus has been on the development of services for three common cancers, lung, colorectal and breast. Presently, services are in place for lung and breast and it is hoped that in the near future we will have a referral system which allows us to identify all new patients diagnosed with colorectal cancer and ensure they have the support and information they require.
Although we cover for each other, Sue is mainly involved with the breast patients and Judith with lung. It is envisaged that the colorectal work will be shared between us. As cancer services develop in the community, more patients are receiving their chemotherapy locally. The chemotherapy is given by ourselves, allowing us to inform and advise patients on their treatment plans, expected side effects and on prevention of complications related to treatment. Referrals for chemotherapy come from Dr. Lillian Matheson or directly from the oncology team in Edinburgh. We are also happy to see and speak to patients who are having their treatment in Edinburgh so they have a contact point locally.
Education is another aspect of our role and we are happy for staff to use us as a resource, if required, in relation to cancer issues and chemotherapy issues. We work closely with Dr Matheson, attending all her clinics, and would be happy to provide a communicative link between her and staff in the community.
We can be contacted by bleep at BGH, Monday to Friday, from 09.00hrs to 17.00hrs. Should we be unavailable a message can be left for us on Ext. 1063.
Palliative Care Formulary
The British National formulary (BNF), especially with its developing format, is becoming an increasingly indispensable text. That doyen of palliative medicine, Robert Twycross, in conjunction with two colleagues, has seized on its format to produce this very interesting book. The book is filled with useful information on over 150 drugs in a very readable form. Following the style of the BNF it expands the information and contains an improved appendix section at the end.
The drugs are first discussed in rotation as per BNF sections with the section reference number included. Each drug has, in addition to its indication, contraindication and cautions, an in-depth note on its pharmacology including bioavailability, onset of action, duration of action and half-life. In particular, the appendix section on the syringe driver is comprehensive, especially the table on compatible drug combinations. There is also useful information on using licensed drugs for unlicensed purposes – a frequent occurrence in palliative medicine. As can be expected from a quality publication, it is well referenced. This book makes a valuable contribution to evidence based palliative medicine.
J.R. Twycross R, Wilcock A, and Thorp S eds 1998: Palliative Care Formulary (PCF1). Radcliffe Medical Press, 254pp, £21.50 ISBN 1 85775 264 3
Multidisciplinary Teaching Sessions at Kelso
The Palliative Care Team have recently held a series of three evening sessions on various aspects of palliative care at Kelso Hospital. The sessions were held in response to requests from various staff members, including GPs, for teaching sessions encompassing all health disciplines within the Kelso area.
The sessions covered communication, breaking bad news, patients’ perspectives and pain and symptom control. The evenings took the form of lectures and workshops and were well received by all participants. PGEA points were awarded for each session and the evening was sponsored by NAPP. In view of the success of these sessions it is hoped that the format will be repeated in other cottage hospital areas. We will be contacting each area in the near future to gauge reactions and offer the package to all staff.
Opioid Rotation
In the correspondence section of the journal Palliative Medicine (vol 12 No 6 1998) is an interesting response to the ongoing controversy of "opioid rotation". John Morely of the Pain Research Institute in Liverpool makes the point that "opioid substitution" may be a better term.
This discussion has arisen from clinical situations where a patient's pain has not responded to an opioid, or the dose of the opioid is escalating with seemingly little additional benefit, or the side-effects become intolerable. In these circumstances substituting with another opioid frequently results in an improvement in the clinical situation.
Hydromorphone can be regarded as a direct substitute for morphine whereas methadone cannot. Methadone has a much longer half-life (tenfold), leading to accumulation with potential toxicity, and it also antagonises NMDA receptors. These receptors, situated in the spinal cord, sensitise nerves to pain. Methadone's blocking effect on NMDA receptors, therefore, makes it a useful drug for treating neuropathic pain. Converting morphine to hydromorphone is straightforward. The conversion dose is calculated by using approximately one seventh of the total daily dose of morphine. Hydromorphone comes both in a slow release and an immediate release form. However, because of its longer half-life, methadone requires much more complex supervision making it an unsuitable choice for opioid substitution outside hospital.
Ripamonti C, Zecca E, Bruera E. An update on the clinical use of methadone for cancer pain. Pain 70 (1997) 109 -- 115
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