Position Statement Ventilatory Support
Guidance on Withdrawal of Assisted Ventilation
Audit of process and Information
Withdrawal of assisted ventilation at the request of a patient with MND
The APM have published Guidance for professionals in this complex area of care. Many of you will have contributed either to the research or the consultation about this work which was lead by Christina Faull.
The Guidance was developed by a multi professional and inter speciality group and there has been opportunity to present the work at British Thoracic Society and home ventilation group meetings nationally. The Guidance is already endorsed by Hospice UK and the RCN and the GMC have affirmed it is consistent with standards of good practice. Broader endorsement is being sought to safeguard patients and families and support professionals.
The Guidance calls for ongoing collation of a core dataset
This audit aims to include patients with a breadth of diseases that require assisted ventilation and is not restricted to those with MND. Further information and instructions for this can be seen here Audit of Process and Outcomes. Data can be submitted by downloading and completing this PDF or contacting the Secretariat for a word or spreadsheet version to complete electronically.
Once completed please email to LAR.firstname.lastname@example.org or post to Professor Christina Faull, LOROS, Groby Road, Leicester LE3 9QE
Please contact Compleat Secretariat for the Word and Excel versions of these documents.
The Secretariat also holds a list of people with experience who would be willing to support anyone who is undertaking this with a patient. Please contact Compleat Secretariat for a copy of this list.
Position Statement Neuro-muscular Disease
Guidance on Withdrawl of Assisted Ventilation
This document presents a framework and operational guidance for improving pain services for adults across the UK with cancer or life-limiting disease.
Position Statement Neuro-muscular Disease
Please, write to me. Writing outpatient clinic letters to patients. Guidance
The Academy of Medical Royal Colleges now endorses the writing of outpatient letters directly to the patient and copying them to relevant health care professionals. This is quite a change from the tradition of writing to the HCP and copying patients. This change is in line with patient empowerment and reducing paternalism, Good Medical Practice from the GMC and the NHS Constitution. In clinical trials it was well received by patients and doctors and it improved patient centred communication.
What is your unit doing and how applicable to palliative care? Do you have experience of working this way that you can share with the membership. The APM would welcomes comments on this
Care of the Dying Adult
National Institute of Health and Care Excellence 
• List of recommendations for adults entering the last days of life
• Includes those dying from chronic or acute diseases
• Includes recognition of dying, decision –making and symptom control
• Section on assisted hydration
• Pharmacological management of symptoms has specific recommendations for certain problems and refers to local guidance for others
• Highlights areas of research needed to provide good quality evidence
Prolonged Disorders of Conciousness: National Clinical Guidelines
Full guidance can be located here
Ambitions for Palliative and End of Life Care
A national framework for local action [2015-2020].
Broad partnership of national organisations with commitment to improving end of life care in England. Present overarching vision and six ambitions to use as a framework for local action.
• Each person is seen as individual
• Fair access to care
• Maximising comfort and wellbeing
• Care is coordinated
• All staff are prepared to care
• Each community is prepared to help
• The document presents a broad and far-reaching vision including changes in the publics’ perception of dying.
What's important to me
A review of choice in End of Life Care. The Choice in End of Life Care Programme Board : London.
Government review of choice in end of life care. The recommendations include
• Individuals to be given an opportunity to specify choices and preferences
• Services available to allow choices to be supported
• Resources and training needed to enable above
Dying without dignity
Investigations by the Parliamentary Health Service Ombudsman into complaints about end of life care. 
• Independent investigation of complaints
• Presentation of cases highlighting issues with end of life care
• Recommendations about improving communication, recognition of dying, and symptom control
Every moment counts
A narrative for person centred coordinated care for people near the end of life. London: National Voices and the National Council for Palliative Care [NCPC] and NHS England 
• Statements of end of life priorities from individuals nearing the end of life
• Discusses a range of issues including symptom control, communication and co-ordinated care
Equity in the provision of Palliative Care in the UK
Review of the evidence. Personal Social Services Research Unit, London School of Economics and Political Science and Marie Curie 
• Review of literature and nationally available data
• Highlights differences due to diagnosis, region, ethnicity
National Council of Palliative Care's annual Minimum Data Set for Specialist Palliative Care
NCPC and Public Health England 
• Activity and demographic data from Palliative Care teams working in different settings
• Includes workforce data
Strategic Framework for Action on Palliative and End of Life Care (Scotland)
National Care of the Dying Audit for Hospitals
Royal College of Physicians 
• Audit of case notes of all deaths in hospitals over 1-month period
• Assessed identification of dying, communication, needs assessment and symptom control
National Survey of Bereaved People (Voices)
Office of National Statistics 
• Annual survey of bereaved people rating quality of end of life care
• Interesting responses about place of death
What we know now
. National End of Life Care Intelligence Network. Public Health England.
• Presents end of life care intelligence from a variety of sources
• Much of research published previously e.g. VOICES data
• Summarises difference aspects of end of life care
One chance to get it right
Improving people’s experience of care in the last few days and hours of life. The Leadership Alliance for the Care of Dying People. London: LACDP. Priorities of care for dying 
• Presents five priorities of care for people dying in coming days
• Provides framework for local guidelines and follows recommendations of Neuberger review of Liverpool Care Pathway
• One chance to get it right: One year on report . An overview on commitments made in in previous report-system-wide response to the Independent review of the Liverpool Care Pathway
Palliative Care Specials
Unlicensed products that are prescribed for individuals to satisfy an individual patient need are called specials. Patients often experience difficulty in either getting prescriptions or in accessing these medications due to huge variations in costs. A Specials Working Group was set up with the aim of addressing this issue. This is an inter-specialty working group representing Dermatology, Paediatrics, Ophthalmology and Palliative Medicine. The aim of this working group is for specials to be added to the Drug Tarriff. The work of the group has led to non-specific primary enabling legislation being put in place. A list of palliative care specials has been approved by the APM and can be found here.
In an effort to empower patients and improve access to their treatment, the Specials Working Group has prepared a template letter which APM members could give to their patients when they prescribe a special. It also provides a hyperlink to a list of NHS specials manufacturers (reproduced with kind permission by the British National Formulary) and other relevant online links. Additionally, the letter will inform and give the patient the possibility of contacting NHS Complaints, if access to their special is denied.