NICaN Regional Supportive & Palliative Care Network

NICaN Regional Supportive & Palliative Care Network Friday 30th May 2008 Lecture Theatre, Fern House Antrim 2.00 pm - 5.00 pm Welcome, Introductions Stuart MacDonnell, Chair of the Supportive and Palliative Care network welcomed everyone to the meeting. This meeting had been rescheduled to accommodate the validation workshop for the regional palliative care model, which took place on Friday,18th April. Acknowledging the full agenda, several items were pulled forward to accommodate speakers SPC_0809_03 Modernisation and Reform of Supportive and Palliative care Mr MacDonnell welcomed Dr Sonja McIlfatrick and Dr Donna Fitzimons, members of the Phase 1 Project Team for the Modernisation and Reform of palliative care. Their presentation highlighted the journey taken by the Project Team since January 2008 - May 2008. Seeking to deliver the network vision, for any person with palliative care need, cancer or non - cancer, the project team incorporated several methodologies. The literature review identified best practice. An assessment of need including epidemiological data and review of service provision. Consultation reflected the engagement with patients, carers and professional forums, primary care and non-malignant focus groups. The breadth of consultation confirmed the evidence for the identified components of the model. These were validated at the April workshop. External review of the work was provided by Dr Phil Larkin (Galway Uni) Prof David Clark (End of Life Care Observatory, Lancaster University) and Mr Bob Neillans (Chair of the Mid Trent Palliative care network, which has been involved in the Delivering choice programme within Lincolnshire). The Guiding Principles of the model reinforced Patient and family centred care, enhanced community provision and supported by specialists. The components of the model are · Identification of patient with Palliative careened · Holistic Assessment · Integration of services · Coordination of care · End of Life Care and Bereavement Care The consultation process also highlighted the need for Increased Public and Professional Awareness. This was recognised as an encompassing component. Underpinning the model is the need for robust Education and common core values e.g. dignity, choice, advocacy, empowerment, partnership working. Stuart MacDonnell, who also chaired the steering group during the project, congratulated the Project Team for delivering the comprehensive document on schedule. The Report has been submitted to the NICaN Board and the DHSSPSNI. In addition, an outline for Phase 2 of this work has been submitted. Mr MacDonnell recognised that there is real opportunity for palliative care to benefit from the DHSSPSNI commitment to concrete developments. Phase 2 will progress the current high-level components of the model into quality services developments at a local level, demonstrating integration throughout. The methods propose continued engagement with the Delivering Choice Programme enabled through a Central and also Local Teams. The report and the Appendices care available on the NICaN website www.nican@n-i.nhs.uk SPC_0809_01 Chairman's Business · Update on the Cancer Service Framework, the document has been submitted and presented to the Departmental Programme Board. Next stages will include the review of costs and development of a implementation guidance It is hoped that the completed document should be available for public consultation in Autumn 2008. with a launch of the framework document and accompanying implementation guide in Spring 2009. Some funding has already been identified to advance key areas of work including, Advanced communication skills training, peer review and an appointment of a post to develop the cancerni.net, focusing on children and e-learning tools. · Children's and Adolescent Cancer network group , Liz Henderson is to convene a group to consider how this is to be taken forward. · NICaN appointments Recognition was given to the significant contribution made by Dr Gerard Daly during his position as NICaN Lead Clinician, particularly throughout the early establishment of the NICaN. Dr Dermott Hughes (Western Trust) has been appointed as the NICaN Medical Director. The Primary Care Director post has been advertised and it is hoped that the Director of Network will be advertised later in Summer. Endorsement of End of Life care paper. The Paper was presented and endorsed at the March 2008 NICaN Board meeting. Mr David Galloway (Director of Secondary Care) emphasised the need for this important work to be recognised within the regional model to ensure that it is reflected in future models of service delivery Congratulations were again echoed to the Chair of the End of Life Group for this work, Dr Glynis Henry, and the working group Other recognition Mr MacDonnell congratulated the significant achievements across the network. These include: · Dr Francis Robinson (Consultant Palliative Medicine, Western Trust) Awarded - Consultant of the year at the NI Health Care awards. · Mrs Evelyn Whittaker Hospice Nurse Specialist, NI Hospice, Joint Second Prize in the Development award within the International Journal of Palliative Nursing Awards, for her work in development of palliative care education in nursing homes. · Mr Ray Elder is the newly appointed Team Leader of Community Palliative care, SE Trust. · Mrs Bridget Denvir, who managed the establishment of one of the first community multiprofessional palliative care teams is moving to work with establishing integrated teams within the Belfast Trust. Bridget has been an active core member of the network and here contribution has been much appreciated. Mrs Sharon Barr will attend in future. SPC_0809_02 Minutes & matters Arising from Meeting, 13th December 2007 No amendments were made to the draft minutes from the December meeting. These will be posted on the NICaN website for future reference. Palliative Care Research Following consultation, the response to the business case for the All Ireland Institute was forwarded on 22 February 2008 to Prof David Clark. Prof Judith Hill informed the group that terms of tender are now being developed. Awareness raising across academic institutions continues to engage interest in potential partnerships. Atlantic Philantrophies have offered financial support to the venture and match funding is being sought from across jurisdictions. Previous discussions at Network meetings have endorsed the need to establish a work strand for research and development within palliative and end of life care. To identify the body of interested parties and explore the strengths and weaknesses of a collaborative model for research, a workshop, - Building collaboration for Palliative and End of life Care Research -will take place on 4 June 10am - 2pm.in the Comfort Hotel.Antrim, The workshop will be chaired by Prof David Clark, Director of the International Observatory on End of Life Care. Prof Shelia Payne, Help the Hospices Chair in Hospice Studies and co director of the Cancer Experiences Collaborative will present the Experiences and Results from Research Collaborative. Feedback from this event will be brought back to the next meeting in September. SPC_0809_04 Patient Information pathways - a pathway for advanced disease Ms Danny Sinclair, NICaN Regional Coordinator for Patient Information informed the network of how patient information pathways have been developed in line with the Cancer Services Collaborative. Emerging themes, with regard to information needs of patients with advanced disease, are being identified from the work undertaken across the tumour groups. It is important to identify all information needs to develop a generic pathway of information resources for advanced disease to be endorsed by the Supportive and Palliative care network. This could be used across the all tumour specific information pathways and across organisational boundaries. The resulting pathway could potentially be used for non- cancer condition. A group is to be established to take this work forward. The group will: · Develop a list of advanced disease information themes · .Identify when they become relevant for the patient or their carer · .Identify existing resources · .Develop resources where needed · .Participate or nominate when review is required Dr Sheila Kelly nominated Helen Hume (SETrust) Paula Kealey will also contribute to this work; a nomination from the Patient and Public Information Forum has also been identified. A date will be circulated across the network to engage further interest and establish group SPC_0809_08 Development of a Regional Syringe Driver Prescription Chart Ms Kathy Stephenson reported that the second consultation of the draft regional syringe driver prescription chart and the focus group discussions, Pilots of the chart are to be undertaken within Trust, Hospices and General Practices. SPC_0809_05 A framework for Generalist and Specialist Palliative and End of Life Care Competency Dr Kathleen Dunne, lead of the Education works strand, reported on the findings following consultation of the Education framework. The report was widely appreciated across the network and valued as a significant and timely document for the commissioning of generalist and specialist adult palliative care education. Mr MacDonnell congratulated Dr Dunne and the members of the education workstrand for developing the framework aligning its significance to the underpinning needs of the regional model Amendments will be made to the document and then forwarded to the NICaN Board for endorsement. A process of implementation will be explored and reported to the network group at the September meeting. Key target areas for generalist palliative care education were highlighted within care of the elderly and general medicine. . SPC_0809_06 Pallcareni.net-a website for people with palliative care needs Ms Danny Sinclair, reminded the group of the pending amalgamation of the CAPriCORN and NICaN website. The resulting new web address will be www. cancerni.net. Recurrent funding has been secured to ensure the development of the supportive and palliative care website.www.Pallcareni.net The new website will host good information for people with palliative care needs, regardless of diagnosis. It will be accessible via the cancerni.net portal or independently as the pallcareni portal. It will signpost people with palliative care needs to condition- specific websites. The website will also enable the communication needs of the NI Regional Supportive & Palliative Care Network. This is a very significant method of seeking to enable greater understanding of palliative care for public and professionals, as highlighted within the regional model. Currently the material from the CAPriCORN website is being migrated onto cancerni and /or pallcareni.net as appropriate. To enable the further development of this opportunity a steering group of interested individuals is to be established. Their role will be to: · Drive the development of the website so it meets the needs of public and professionals through the sourcing and development of additional content · Identify any support that is needed, e.g. technical support · Review the website as a whole as it grows (coordinating condition-specific developments) · Review the functions of the website to aid communication throughout the Supportive and Palliative care network The steering group representation should reflect the constituencies within the Supportive and Palliative Care network. Current expressions of interest have come from Heather Reid and Valerie Peacock. A date will be circulated across the network to engage further interest and establish group SPC_0809_07 Update of Guidelines workstrand Dr Pauline Wilkinson presented the current work within the guidelines workstrand. 1. Brief Holistic Assessment & Referral Criteria to Specialist Palliative Care The development of an Holistic assessment Tool will help to identify holistic need at generalist and specialist level. Recognition of complex need prompts appropriate referral to specialist palliative care. The regional referral form is compatible with the Minimum Data set. The final drafts of this work are to be circulated widely, inclusive of service framework groups, primary care, secondary care and the supportive and palliative care network. Consultation will take place during June and July. Piloting of the forms will also be undertaken. 2. Control of Pain in Cancer Patients The original guidelines where developed 2003 and are now ready for review. The Mapping exercise, undertaken in May 2007, highlighted that the Guidelines were poorly adopted. The group have reviewed the pending SIGN 2 guidelines for pain with regard to practice in Northern Ireland. These are highly evidence based and are due to be launched this Summer. Whilst an excellent resource their comprehensiveness limits their readability, this may result in poor compliance. The Guidelines group feel it is important to have accessible and user-friendly guidelines particularly for Generalists and Out of hours. There are examples of good work that has taken place across the province, but there is a need for regional consistency. Dr Wilkinson has contacted Dr Carolyn Harper (Deputy CMO) and GAIN with regard to enabling funding to progress this work. The Guidelines group hope to approach the NICaN Primary Care Group to work in collaboratively on this piece, based on the templates already available. The works should be available in both electronic and paper versions. 3. Care of the dying & Breaking bad news Dr Gail Johnston has now completed an Audit of the Care of the Dying Pathways within the EHSSB. Gail is also seeking to examine to what extent the Regional Guidelines for Breaking Bad News are being implemented in the EHSSB with a view to identifying the need for further training or organisational structures that would facilitate future uptake. 4. Advances in new Technology Syringe Drivers Dr Wilkinson reported on a presentation made to the guidelines group by Mr Jim Elliot, Principle Engineer, Cardiology & Ann McLean, and Macmillan Palliative Care Nurse RVH. There is increasing concern with regard to how devices meet the recommended safety standards and how to reduce error. New devices have 3 point checking, automatic detection of syringe, automatic flow rates, full range of alarms, battery status and data download to provide an event log. There are now 2 companies in UK who have devices that meet these safety criteria. The current Graseby syringe drivers, which have been on the market and used predominately within Northern Ireland over the past 27 years Most new devices are not compatible with the regionally available monoject syringe, however contractual changes will lead to the withdrawal of the monoject syringes in October 2008. The Guidelines group supports a regional approach to this matter. This was echoed in the Supportive and Palliative care network. An option appraisal, identifying costs, and training issues should be developed through the engagement with Trusts and DHSSPSNI. The issue of Patient safety should be raised with the DHSSPSNI. SPC_0809_09 Evaluation of Supportive and Palliative Care network Deferred to next meeting. . SPC_0809_10 Emerging Issues Mrs Anne Coyle, Bereavement Coordinator, Southern Trust, announced that the Regional Bereavement Strategy is soon to be released. Anne supported the close alignment between the content of the strategy and the work of the regional model and other workstrands within the Supportive and Palliative care network. Ms Eleanor Donaghy, Transplant Coordinator, briefly highlighted the issue of tissue donation. Each year Northern Ireland has a dearth of corneal donations. There is no upper age limit for donation and retrieval is not limited by a cancer diagnosis. Recipients do not require immunosuppressive and the transplant is lifelong. The National Blood Service provided coordination of this donation they may be contacted via 07659180773. It is hoped that Mrs Coyle and Ms Donaghy could provide more comprehensive presentations at a future meeting. Events · Irish Psycho- Oncology Group Seminar, Cork 6 June, Exploring the Struggle for meaning in Cancer · Integrated Care: Putting Research into Practice, 13June, Trinity College, Dublin · Macmillan online conference Friday 13 June 2008, 9am - 5pm · Delivering effective end of life care: developing partnership working 15 Oct 2008, 9.30 -4.15 pm London Network Meeting was closed at 5.00pm SPC_0607_ Dates of Future Meetings (please note the change of venue) 10th September 2008, 1.30 - 5pm venue to be decided15th January 2009, 1.30 - 5pm venue to be decided12th May 2009, 1.30 - 5pm venue to be decided Attendances Apologies Stuart MacDonnellLorna NevinSonja McIlfatrick Donna FitzsimonsKathleen DunnePauline WilkinsonKathy StephensonSheila KellyMarie Nugent,Anne CoyleFiona GilmourJudith HillLorna DicksonMargaret CarlinLoretta GribbenYvonne Duff Lesley NelsonLiz HendersonSue FosterCathy PayneGraeme PaynePatricia MageeGeraldine WeatherupPaula KealyCaroline McAfeeLinda WrayValerie PeacockAnn McCleanRay Elder Martin BradleyHelen HumeGillian RankinHeather MonteverdeJulie DoyleAlison PorterYvonne SmythLiz Atkinson,Glynis HenryMaeve HullyCaroline HughesAnn FinnBob BrownSharon BarrJulie DoyleJanis McCulla .

Step this way for better health

This leaflet explains how to use a step counter to motivate yourself to do more walking. It includes a step log to encourage walkers to monitor and record their progress.

PHA supports World No Tobacco Day

The Public Health Agency is taking the opportunity to highlight this year's World No Tobacco Day which takes place on Tuesday 31 May.In Northern Ireland, around 340,000 people aged 16 and over smoke. Smoking contributes not only to many cancers, heart disease, bronchitis and asthma, but to other illnesses, including stroke. In fact, smoking causes around 2,700 deaths per year here, all of them avoidable.The PHA is committed to saving lives by reducing the percentage of people who smoke. The PHA:works with councils to ensure smoking-related laws are enforced; funds a range of support to smokers who want to quit; educates young people to not start smoking, through programmes like 'Teenage Kicks' and 'Smokebusters'. In January this year, the PHA also launched its smoking campaign 'Things to do before you die' to encourage smokers, particularly those aged 20-49, to stop smoking.Health Minister Edwin Poots said:"Smoking is the greatest cause of preventable illness and premature death in Northern Ireland. While good progress has been made in the last number of years to reduce the number of people who smoke, more needs to be done."I would appeal to all smokers to use the wide range of support services available to make every effort to stop smoking - it is the single best step you can take to improve your health and quality of life."Mark Mc Bride, Health Improvement Manager, PHA, said "Smoking is the single greatest preventable cause of death in the world today. Across Northern Ireland there are over 600 support services for people who wish to stop smoking. These are based in GP surgeries, community pharmacies, hospitals, community centres and workplaces."From April 2010 to end March 2011 more than 1 in 10 of all adult smokers sought help from the support services and approximately half had quit after four weeks. This is a substantial - roughly 50% increase - on previous years and shows the benefit of the PHA campaigns and the dedication of the many specialists who help smokers quit."I would encourage everyone who is either thinking about quitting or ready to log on to our Want 2 Stop website www.want2stop.info or to contacting the Smokers' Helpline on 0808 812 8008 a Quit Kit free of charge."

For your heart's sake stop smoking

On World Heart Day, 29 September 2011, the Public Health Agency is urging all smokers to stop smoking and reduce their risk of developing heart disease (cardiovascular disease - CVD) or suffering a stroke or a heart attack.Heart disease is one of the leading causes of death and illness in the UK. Research shows that smoking is one of the main contributors of the disease, causing around 25,000 deaths a year in the UK. Cigarette smokers are two times more likely than non-smokers to suffer a heart attack.The majority of people who suffer a heart attack before the age of 50 are smokers. Cigarette smoke causes heart disease by:· reducing oxygen to the heart;· increasing blood pressure and heart rate;· increasing blood clotting;· damaging cells that line coronary arteries and other blood vessels, causing narrowing of the arteries.From the moment smoke reaches your lungs, your heart is forced to work harder. Your pulse quickens, forcing your heart to beat an extra 10 to 25 times per minute, as many as 36,000 additional times per day. Because of the irritating effect of nicotine and other components of tobacco smoke, your heartbeat is more likely to be irregular. This can contribute to cardiac arrhythmia and many other serious coronary conditions, such as heart attack.For smokers who already suffer from heart problems, quitting will dramatically help. Many heart patients notice an almost immediate improvement when they stop smoking. Often, they need less medication and can cope better with physical exertion.Gerry Bleakney, Head of Health and Social Wellbeing Improvement, PHA, said: "Smoking is one of the major causes of cardiovascular disease and smokers are almost twice as likely to have a heart attackas someone who has never smoked. One in every two long-term smokers will die prematurely from smoking-related diseases, many suffer very poor health before they die. However one year after successfully quitting smoking, an individual will have reduced their risk of having a heart attack to half that of a person continuing to smoke."Across Northern Ireland, there are over 600 support services for people who wish to stop smoking, based in GP surgeries, community pharmacies, hospitals, community centres and workplaces. I would encourage everyone who is thinking about quitting to log on to our Want 2 Stop website: www.want2stop.info and order a 'Quit Kit' free of charge alternatively contact the Smokers' Helpline on 0808 812 8008."

PHA supports World Hospice and Palliative Care Day

Saturday 8 October 2011 marks World Hospice and Palliative Care Day. The Public Health Agency would like to celebrate and support hospice and palliative care around the world by raising awareness and understanding of the needs - medical, social, practical and spiritual - of people living with a life-limiting illness, and their families.This year's World Hospice and Palliative Care Day theme is 'Many diseases, manylives, many voices - palliative care fornon-communicableconditions'.The theme will focus on how people living with conditions thatare notinfectious can benefit from palliative care.Non-communicable diseases (NCDs), which include cardiovascular diseases, cancers, chronic respiratory conditions and diabetes, make up60% of deaths worldwide. The majority of thesedeaths occur in low and middle income countries, where palliative care is often not available. To get involved in World Hospice and Palliative Care Day, log on to www.worldday.org/get-involved/ which gives you ideas and suggestions on what you can do on the day to support people living with life-limiting illnesses, and their families.Mary Hinds, Director of Nursing and Allied Health Professions, PHA, and Chair of the Implementation Process for End of Life Care in Northern Ireland, said: "Good quality palliative and end of life care will be important for us all. 'Living Matters, Dying Matters' is a five year strategy for palliative and end of life care in Northern Ireland, established to ensure that any person living with a life-threatening illness lives well and dies well, irrespective of their condition or care setting. "It has been encouraging to see the plans being taken forward by the Health and Social Care Trusts in partnership with local hospices and other providers, and involving local people."We aim to ensure that people receiving palliative care, their families and carers, are provided with high quality care across all settings and conditions, and are supported to enjoy a good quality of life, maximising their potential through the course of their illness."There is still some progress to be made within the context of the review of health and social services. We are looking for statutory and voluntary services to work together to make a significant difference in improving access to high quality services for those with life-limiting conditions, and to develop innovative approaches to care."

Smoking causes mouth cancer, PHA warns

Mouth cancer awareness week begins on the 13 - 20 November. With this in mind the Public Health Agency is urging everyone to be aware of the signs and symptoms of mouth cancer and is encouraging all smokers thinking about stopping smoking to make the decision to stop today.In Northern Ireland 195 people were diagnosed with mouth cancer in 2009. The disease causes one death every five hours in the UK and yet it is one of the least well-known cancers. Smoking and excess alcohol consumption is associated with an increased risk of developing mouth cancer, which can occur in or on any part of the mouth, tongue, lips, neck and throat. In its very early stages, mouth cancer can be easy to ignore. Most people with mouth cancer have no early symptoms at all, but others may have:an ulcer in the mouth or on the lip that won't heal; constant pain or soreness; red or white patches in the mouth;a lump on the lip, tongue or in the neck; bad breath; unexplained bleeding in the mouth; numbness in the mouth; loose teeth.The earlier the disease is caught, the better. Survival rates rise to 90 per cent if the cancer is treated before it has spread. Gerry Bleakney, Head of Health and Social Wellbeing Improvement, PHA, said: "Certain lifestyle choices can increase an individual's risk of developing mouth cancer. Tobacco is considered to be the main cause of mouth cancer, with three in four cases being linked to smoking. Excess alcohol consumption is also a known factor, with those who both smoke and drink excessively being up 30 times more likely to be at risk. "Mouth cancer and the treatment required can be traumatic for the patient as this may affect functions such as speech, chewing and swallowing. The positive news is that stopping smoking is associated with a rapid reduction in the risk of oral cancers. Regular trips to the dentist are also a must because half of all mouth cancer cases are detected by dentists."I would encourage everyone who is thinking about quitting to log on to our Want 2 Stop website www.want2stop.info and order a 'Quit Kit' free of charge. Alternatively contact the Smokers' Helpline on 0808 812 8008. "Health Minister Edwin Poots said: "Smoking is the single greatest cause of preventable illness and premature death in Northern Ireland.It is a major risk factor for oral cancer, as well as coronary heart disease, strokes and other diseases of the circulatory system. Approximately 2,300 people die each year in Northern Ireland from smoking related illnesses. Quitting smoking is the single most effective step people can take to improve their long term health."A key objective of the Department's new ten-year tobacco control strategy, due to be published next month,is to prevent people from starting to smoke. Funding provided by the Department for smoking cessation services has resulted in around 650 such services being made available in Northern Ireland in a range of settings, including pharmacies, GP surgeries and community centres. These services have helped almost 80,000 smokers to set a quit date between 2008/09 and 2010/11."The Minister added: "It is also important for people to look after their oral health by regularly attending the dentist for check-ups, as any problems can be picked up and treated at an early stage."

The PHA message is clear for World COPD Day - smoking is bad for your lungs

In 2011, 31,574 people were registered as having Chronic Obstructive Pulmonary Disease (COPD) in Northern Ireland. The most common cause of COPD is smoking and to mark this year's World COPD day, which takes place on Wednesday 16 November, the Public Health Agency is encouraging all smokers to make a decision to stop smoking today and reduce their risk of developing the disease.COPD refers to a group of diseases which includes emphysema, chronic bronchitis, and in some cases asthma. With COPD, the airways in the lungs become damaged, causing them to become narrower, therefore restricting airflow and thus making it harder to breathe. The most common symptoms of COPD are breathlessness, wheezing, abnormal sputum (a mix of saliva and mucus in the airway), and a chronic cough often mistaken for a 'smokers' cough'. Symptoms can range from mild to severe, depending upon how advanced the disease is. In advanced cases, daily activities, such as walking up a short flight of stairs, can become very difficult.There is no cure for COPD. Stopping smoking is the single most effective wayto reduce your risk of developing COPD and avoid any further damage to the lungs. Gerry Bleakney, Head of Health and Social Wellbeing Improvement, PHA, said: "Smoking causes the lining of the airways to become inflamed and damaged and is the biggest cause of COPD. The risk of developing COPD increases the more an individual smokes and the longer they smoke. "The good news is that making changes to your lifestyle can reduce your risk of developing COPD. Stopping smoking reduces the risk of developing COPD and also slows down its progression. There is support available to help you quit and I would encourage everyone thinking about stopping smoking to log on to our Want 2 Stop website www.want2stop.info and order a 'Quit Kit' free of charge. Alternatively contact the Smokers' Helpline on 0808 812 8008 for help on planning to stop smoking or to find out where your nearest Stop Smoking Service is. "The Health Minister Edwin Poots said: "The impact of living with COPD can place a considerable strain on the lives of those suffering from the condition and their families. I understand that most smokers want to quit but it is not always easy to succeed and that several attempts are frequently necessary. I would therefore urge all smokers on world COPD day, to make that commitment to stop smoking. Professional help and support are readily available. There are almost 650 smoking cessation services provided all over Northern Ireland, mostly in community pharmacies, but also in GP surgeries, hospitals, community halls and schools."

We get 10 of our 60 minutes playing football

This poster highlights the importance of children being physically active for at least 60 minutes every day. Parents, carers and children are encouraged to visit the website www.getalifegetactive.com to download the activity log book to track how much activity they are doing daily.