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2 A new chapter Dr Gari Purcell-Jones, Chairman Patients are unsure of what to expect when they first come into contact with Jersey Hospice Care; invariably they are trying to come to terms with something that is incomprehensible and which they had hoped never to face. The way we die lives on in the memory of those we leave behind who loved and cared for us. A peaceful passing removes our own fear of dying when our time comes. Jersey Hospice Care is not a place or a house, nor is it a team of specialists, or even simply a charity. It is a concept of care; a way of caring that gives hope when a cure is beyond reach. It is a distillation of human kindness that recognises the right to die in peace, with dignity, in a place of your choosing. This is something we all hope for and to which we all aspire. Over the last three decades we have been proud of the service provided by the Island’s Hospice. Jersey Hospice cares 24 hours a day, seven days a week, 365 days a year; whenever you need us; wherever you are, in your home, in the community or at Clarkson House. We also provide physiotherapy and lymphoedema treatment and the Community Bereavement Service team continues to support our loved ones when we are gone. It was evident after an assessment of the challenges faced due to the island’s demography, and the need to prepare for the expected health and population changes in the coming decades, that the planning and development of a new Hospice on its present site would be required. The cost of relocation was prohibitive and the trustees decided to develop the existing site while carrying on with a normal service. This was a very tall order, remarkably well achieved with almost no disruption to our clinical services. The funding of the project was daunting with the onset of an adverse financial climate, but was achieved with the use of a strategic reserve, prudently built up over many years, and the support of the States’ Fiscal Stimulus Fund as well as some generous donations. Thus, your Hospice can now meet the future challenges presented by the planned health care changes proposed in the recently debated Health and Social Services White Paper. The location of the Hospice at Mont Cochon is a cherished site close to our hearts. The use of the property was originally enabled by the trustees of the EVA Rouse Settlement who leased the site to us for 99 years at a peppercorn rent of £1 per annum. In view of the major redevelopment planned, they decided to gift the ownership of the freehold of the original Les Sillettes site. This remarkable act of generosity has secured Hospice for today and the future. Looking now at the new Hospice it is sometimes hard to recall the modest homely bungalow in Grouville that became the first Clarkson House. Although it’s now new, larger and more modern, we won’t lose sight of the values that have always been important to us. Namely that we provide a free service, with the help of volunteers, where the patients’ preferences come first and our resources, which are provided by unstinting island support, are always used prudently. I am proud of, and grateful for, the dedicated work of our staff and volunteers which has established our reputation over the last 32 years. Steve Harvey, Chief Executive Jersey Hospice Care There is much information within this supplement which seeks to highlight Trustees the conclusion of the redevelopment of the facilities at Mont Cochon, while providing information about key areas of the charity, the services it provides and important recent developments about expanding and further developing services in order to ensure that more Islanders are cared for. Chairman.......................................... Dr Gari Purcell-Jones Directly or indirectly, Jersey Hospice Care touches the lives of most people in Jersey. The charity exists to care for people at a very important time and it exists thanks to Honorary Treasurer................................... Ian Richardson the remarkable contributions made by so many people. So it is all about people; At the centre of everything are patients and their loved ones. Honorary Secretary.....................................Ian Shepherd At a crucial time, Jersey Hospice Care provides care and support to patients and clients, their family and friends. All staff and volunteers are committed to ensuring Trustees ..............................................................Diane Weber that, whatever their particular contribution or role might be, they consistently make a positive difference to patients and their loved ones. The Hospice also works Geof Dingle alongside other healthcare partners including GPs, Family Nursing and Home Care Sheila Baker and colleagues in the General Hospital, nursing and care home settings. Geoff White Ultimately, none of this would be possible without the incredible support of the people of Jersey who, since the charity was Emelita Robbins established in 1982, have provided the funds needed to enable the charity to provide for those requiring palliative care. Patron.......................................................Sir Michael Birt QC Jersey Hospice Care is in the community and at the Hospice with 24 hour care. People will always be central to everything we strive to achieve, and as we look forward to the future, our staff, volunteers, other healthcare providers and the public, will be ever more crucial. It’s amazing what can be achieved when we work together. We are delighted to ROSS-GOWER a s s o c i a t e s CO N S U LT I N G E N G I N E E R S have been the We would like to extend our thanks to Camerons for entrusting Sureflow civil and structural Guttering to supply and install all the guttering works to Jersey Hospice. consultants for ‘Sureflow Guttering is an integral part of the Premier group La Ronde, Devonshire Place, of companies and are specialists in all aspects of aluminium seamless guttering and associated rainwater goods’ Jersey Hospice St Helier, Jersey, JE2 3RD Telephone 01534 879262 Tel: 01534 734843 Fax: 01534 769054 Care. Email firstname.lastname@example.org Web www.rga.co.je Email: email@example.com Web: www.premiercontractingjersey.co.uk
3 Expanding our remit Gail Caddell, Lead Nurse Specialist palliative care: physical, psychological and spiritual support, involving a broad mix of skills including medical and Jersey Hospice Care – expanding its remit to care for more Islanders. nursing care, social work, pastoral/spiritual care, allied health professionals and pharmacy support. In the early days of the Hospice Care movement, cancer was undoubtedly the most feared cause of death. The improvements in treatments for cancer and palliative care mean, however, that is no longer the case. Increasingly, it has been recognised that those dying with non-cancer The Specialist Palliative Care Team (SPCT) will: conditions in the island are not receiving equitable care and this is a morally and ethically unacceptable situation. • Ensure equitable palliative care for all • Deliver island-wide support, care, advice and symptom control Jersey Hospice Care trustees have made a significant decision: In the future, care will not be to all Islanders with any life-limiting progressive disease and/ restricted to only those dying with cancer and Motor Neurone Disease. Our remit will or condition resulting in specific palliative care needs such as be opened to include all those dying with specialist palliative care needs, regardless of respiratory, heart or renal failure the cause. This reflects the position of the vast majority of hospices in the British Isles. • Help build an equitable and seamless service and continuity of care with individual choice regarding their preferred place Specialist Palliative Care team (SPCT) Hospice at Home team of care and death • Work across all areas of health in order to assess the patient, The Health and Social Services White Paper, which provided information The majority of people (65%), given the choice, express a wish to wherever they are i.e. at home, in a nursing/residential home or about the proposed redesign of Jersey’s health and social care system, die at home. Most people state that they do not want to die in at Jersey’s General Hospital highlighted the need to improve end of life care for adults and children the clinical environment of a hospital. Unfortunately, the lack of with any life limiting disease and/or condition. This incorporated support at home has increasingly resulted in hospital admission • Primarily be made up of Jersey Hospice Care staff and include specialist palliative care and stated a co-ordinated island-wide specialist at the end of life. In the past, Jersey Hospice Care has always tried clinical nurse specialists, an associate specialist doctor, GP palliative care service was required. to support the health service using a nurse based service in the champions, nurse champion, social worker, allied health community and at our base on Mont Cochon. Going forward, professionals, bereavement support and a pharmacist Thus, Jersey Hospice Care will lead the delivery of a Specialist we will be broadening the care we deliver and changing the way we deliver it in order to meet increased demand. • Will ensure it provides complex symptom management and Palliative Care Team (SPCT) and this will be formally recognised in holistic care so patients have the optimum quality of life until a service level agreement with the States of Jersey. It is important Thus, we will also be creating a generalist Hospice at Home their death to reinforce that despite this, we will maintain our cherished independent status and the crucial importance of our staff and Team to work alongside this SPCT, which in close collaboration • Educate and empower individuals and families so they can volunteers will not be diminished in any way. with all other service areas of the Hospice, will help to support make informed decisions about treatments, care management people being cared for in their own homes in partnership with the and end of life care including all current and future palliative There have been robust discussions with the Health and Social Services community nursing services. care needs commissioners, with acknowledgement that there will need to be a transition period for the implementation of this agreement. We will This is an exciting and important time for all those involved in • Provide specialist education to support other health care continue to remain reliant on public generosity to fund our running health and social care in Jersey, and we are delighted to be playing professionals in the community and at Jersey’s General Hospital costs. However, the charity will receive a financial contribution from the an integral role in planned improvements for all those requiring • Work alongside a generalist Hospice at Home Team who will States of Jersey of approximately 10% of overall running costs towards specialist palliative care. However, we are acutely aware that we support people in their own homes in partnership with the the cost of service provided by this SPCT. cannot provide this committed, compassionate care without the community nursing services support of Islanders who have generously provided the necessary Part of the care team’s role is teaching others and sharing their experience funding in the past. Our volunteers, and all the people who support • Work seven days a week, 9am-5pm with a reduced service at in delivering palliative care. Our ambition is to develop and support us are fundamental to the ongoing success, as we move forward weekends and bank holidays other professionals and carers involved in palliative and end of life care, to deliver this essential extended service to Islanders at what is • Provide an on-call specialist palliative care telephone advisory to improve confidence and competence wherever they practice. potentially the most vulnerable time in their lives. service 7 days a week, 24 hours a day
4 Day Hospice Tracey Fallon, Day Hospice Sister Hospice services are being adapted to meet the Janet Woods, changing needs of the people they support. Day Hospice patient We are embracing these challenges and with our new facilities, we are able to review and I used to spend four months in develop our services to enhance therapeutic Australia over winter and it was and day services. while I was there in 2012 that I was diagnosed with bone, and later, liver The aim is to enrich our traditional day care model cancer. Ten years prior to this, I’d with other new individual and group activities. This been diagnosed with breast cancer. will allow for increased flexibility as patients can I started my chemo in Australia and access different elements of the service at different then came to live in Jersey with my stages of their journey through full day, half day, daughter, her husband and children. group sessions and individual appointments. At the beginning it all got a bit much and Our future programme may include education and I was extremely angry. I used to manage group support sessions on managing symptoms a day centre for elderly people and I think (such as pain, anxiety, breathlessness, fatigue, that’s why I was so angry – I was the one nausea and vomiting), communication, nutrition who dealt with patients and didn’t want and advance care planning as well as practical to be one myself! sessions focusing on arts and crafts, gardening, finances and work. We hope to offer patients and I was then referred to Jersey Hospice Care their carers even more support, while empowering and a couple of nurses came to see me them to manage their own condition and prevent at home to talk about what to expect, unnecessary complications. inviting me to come along. I didn’t know anyone in Jersey so saw it as a good opportunity to get to know new people. Things just The Day Hospice team comprises two qualified nurses, a health care assistant, an activity co-ordinator and blossomed from there. From the old building we soon moved into the new King Centre which is many volunteers. The nurses have a mix of knowledge and experience to blend specialist palliative care and wonderful. It’s a lovely place to be; it’s so peaceful, the rooms are beautiful and there’s a place to do support services, and the activities co-ordinator helps promote wellbeing through artistic and creative projects arty stuff which I like. providing distraction from patients’ day-to-day difficulties and serving as a conduit for emotional expression. The support from staff was fantastic and it’s really helped me on my chemotherapy journey. We are also extremely fortunate to have some 50 volunteers who work alongside us. Volunteer drivers offer vital Medically, they’ve been so helpful; I’ve had one-to-one emotional support sessions where I could support by bringing patients to and from the King Centre. Some help serve teas, coffees and lunch and spend rant and rave and as a result of these I’ve learnt how to deal with my anger. I’ve worked with the time listening and talking to people as well as joining in with creative activities. We also have a small hairdressing physio team who’ve helped me with my breathing - I spend time in the gym which has helped area and local hairdressers volunteer their time. A small thing like this can really make a difference to people. strengthen my lungs. The complementary therapies are great – I have Reiki treatments and hand and foot massages where I lie down and listen to beautiful music. It’s completely my time, all about me… and it’s all free! To me, there are never enough hours spending time at Jersey Hospice Care – I come twice a week and I adore it. It’s time out away from our social problems and all you could possibly want is here. I need people to talk to and it’s not about cancer funnily enough. We have quite a laugh, we don’t dwell on things, we talk about what’s happening in Jersey and there are so many lovely volunteers who are also always ready to talk; I can’t praise it highly enough. I’m so glad I’ve found this place. I’m not frightened and I’ve never thought of it as doom and gloom – it’s cheerful and happy here and I have no qualms about things. There are so many benefits – thank you fundraisers. I can’t imagine life without it. Lauren Perchard Rees, Cancer Information Support Specialist Macmillan Cancer Support (Jersey) works in close partnership with Jersey Hospice Care, along with a number of other local organisations, to ensure the needs of Islanders requiring support are met in the very Donna Banim, best way, to the highest Health Care Assistant standards. We all have the community’s best interests at the heart of everything we do and by complementing the The health care assistant role is extremely services we each provide, understanding what each of our partners does and being able to varied, everyone has different needs and signpost our service users to the very best place for them, we are ensuring that everyone who an individualised care plan. I help with any walks through our doors or contacts us, receives a service tailored and appropriate to them. problems or concerns people may have, Macmillan Jersey’s role in the cancer support network is to provide information and support working closely with the nursing team. to anyone affected by cancer on the island – patients, their loved ones and colleagues, at any stage of their cancer journey. We provide free and confidential practical advice, information and The job can be very diverse as we support people emotional support at our Cancer Information and Support Centre at the Lido Medical Centre. with their physical, emotional and social needs. You get to know people and their family, friends and We work closely with the island’s Hospice to share facilities, best practice, information resources carers but equally we respect one’s privacy – we are and training and to refer our service users to each other where appropriate. Macmillan Jersey available with listening ears to talk to if, and when, does not provide nurses within people’s homes as is done by Macmillan UK because this service people want to share. We thank Camerons for is provided so comprehensively by Jersey Hospice Care and Family Nursing and Home Care. entrusting us to carry out all Our Day Care facilities are equally important The emotional impact of cancer can be devastating for patients and their loved ones. We are the mastic work at the for family members as it can be a difficult time, here to provide a listening ear and emotional support. We also offer people guidance on how particularly when a family situation and the roles to live beyond cancer and we are currently piloting a ‘Life after Cancer’ programme in Jersey JERSEY HOSPICE within it have to change as a result of a life-limiting condition. We can provide support and advice to as we know the effects of treatment and the cancer experience can stay with people for the rest of their lives. We are here to help people adjust and to live as healthy and happy a life for EXTENSION help cope with things at home as well as offering as long as possible. the opportunity for relatives to have some time Specialists in all aspects of interior away from caring, safe in the knowledge that their We also have a Freephone line for people who have poor mobility, or wish to remain and exterior sealant applications loved one will have their needs catered for. anonymous or want to make an appointment or ask a question. We host monthly coffee for kitchens, bathrooms and mornings, which is an informal, supportive environment for those affected by cancer and we conservatories. It’s important to emphasise that although there are facilitate a Prostate Cancer Support Group and Gynae (gynaecological cancers) Support Group, sad times, Jersey Hospice Care is fundamentally a which meet monthly, providing peer support to people affected by either type of cancer, their Telephone: 07797 732 859 very happy place where patients and their families partners and families. Home: 631586 and 499526 value a quality of life and time. Fax: 631586
5 The King Centre Education Imelda Noolan, Clinical Educator Part of Jersey Hospice Care’s mission is to promote care of the highest standards to all those in need. Good palliative and end of life care, provided by multi professional teams, comes together in a different way for each patient and those close to them. This complex choreography requires a well trained workforce who are competent and confident and who understand how to co-ordinate care across settings and services. One of the charity’s key initiatives is to provide high quality training opportunities for other health care professionals working in end of life care. As a centre of excellence, it is imperative that our own staff keep up to date with any relevant clinical initiatives so as to act as positive role models. Alongside a clinical facilitator and a number of experienced health care professionals, our Education team is committed to enhancing palliative care knowledge, ensuring all our practice is evidence based and that we develop staff competencies in this speciality, as well as in partnership with others across the island. The King Centre is home to the day hospice facilities where for people who want to spend time outside in the fresh air. I work as a sister on the In-Patient Unit which promotes a culture of practice development we deliver supportive care. This has been named after the The new Pure Charity Coffee Shop is also regularly used by in the principles at ward level. Jersey Hospice Care is now working closely with the late jurat Jean King MBE and her husband John, to reflect patients’ visitors as an additional place to relax and chat. Education department at Jersey’s General Hospital to develop this further by having the contribution they have both made to Jersey Hospice student nurses here for short placements. Many of our nurses are qualified mentors and Care. The King Centre meeting and training room facilities at Mont as such can support learning in practice. We are also working closely with other health Cochon are available for outside organisations and groups to care professionals and organisations to put together an annual education programme People are referred to Day Hospice through the Community hire any day of the week during the day, in the evenings and for the Island’s health care workers. nursing team and attend on a Monday, Wednesday and Friday at the weekends. from 10.30am to 3.30pm. We have recently had the benefit of working with Geoff White, Senior Nurse, Practice Complete with AV facilities, we have two self-contained rooms Development and Non Medical Prescribing Lead at Jersey’s General Hospital and a The aim of the service is to improve the quality of people’s lives which can accommodate a combined total of 80 people. Hospice trustee. We worked together to deliver an academic programme incorporating by helping patients and their families manage the problems the theory and practice of medicines used in palliative care. This was a fantastic arising from a life-limiting diagnosis. In order to ensure we The modern and spacious rooms can be hired on a half a day, opportunity to use our new education facilities and to welcome nurses from other are caring for each individual, we listen to patient and family evening or full day basis. Refreshments and sandwiches can be specialities, increasing their awareness of the services available here at Hospice and how concerns while assessing the physical, emotional and social provided and tables and seating arranged to suit your needs. their patients can access them. needs in order to come up with a specifically tailored care plan. The rooms are self-contained and situated above our Pure Geoff White said: “Nurse prescribing, whilst relatively new to the island, can improve The new King Centre has spaces which allow for group Charity coffee shop which can serve as an additional break out the holistic care of patients. This is particularly important in the delivery of specialist interaction as well as privacy for one-to-one support. The area as necessary. Parking is also available. palliative care, where the nurse is well placed to assess and manage symptom control. lounge has a lovely feel, it’s a very sociable place with a I hope that in the future, and in line with current health and social care reforms, we dedicated art room attached. There is an outside area with Bookings can be made by contacting Joe on 876555 or will start to see nurses providing this type of service and the key will be partnership stunning views across St Aubin’s Bay. There is a greenhouse email firstname.lastname@example.org between our two organisations.” and garden planters, which are also suitable for wheelchairs,
6 Therapies Palliative care rehabilitation is not solely about the very end of life, but about focusing on the patient as a whole to enable them to have the best possible quality of life. So the Therapy team is an integral part of Jersey Hospice Care, providing specialist physiotherapy, complementary and lymphoedema interventions by highly trained staff. The Therapy team comprises of two physiotherapists, a complementary therapist, lymphoedema nurse specialist and a therapy assistant who work with patients throughout Jersey Hospice Care. The department has recently moved into newly redeveloped facilities including a fully equipped gym and three treatment rooms, which, thanks to a generous grant from the Association of Jersey Charities, have been kitted out specifically for patients and their needs. Last year saw an increase in the number of patients attending Clarkson House for physiotherapy treatment with more than 1,000 sessions given. Approximately 1,000 complementary and lymphoedema sessions were also given to other Islanders. As a result of the expected increase in those needing palliative care over the coming years and with our improved facilities and specialist equipment, we hope to extend our services including more group work, individualised clinics, education programmes and support services for carers and families. Importantly, our remit is extending to cover a wider range of patients needing palliative care. “After surgery and radiotherapy, my arm became swollen and doubled in size. It was a tremendous relief to be given hope that the condition could be treated. I was given a compression sleeve which has reduced the swelling considerably. I’ve attended clinic regularly and my condition has been kept under control. There has also been plenty of advice on exercise, skin care and general life style as well as self massage. The clinic has been a lifeline for me and others to help us lead normal, active and healthy lives.” Lymphoedema Complementary therapies Although not commonly recognised, lymphoedema is thought to affect as many Complementary therapies add an extra dimension of care to Jersey Hospice “Many people question the point Care’s commitment to nurturing the body, mind and spirit. These holistic as 100,000 people in the UK. Lymphoedema practices don’t replace the medical, social, or spiritual care of the Hospice of physiotherapy but through the is a swelling of a part of the body as a result team, rather they work alongside the whole care team to promote comfort of a build up of lymphatic fluid in the tissues for both patients and their families. rehabilitation and advice that I due to inadequate lymphatic damage. have received, I am learning to This commonly occurs in cancer patients Complementary therapies are available to any patient, their carers and close family due to the tumour itself, the removal of members and they are provided within the In-Patient Unit, through the day care cope and adapt during this roller lymph nodes during surgery or from the treatments of the cancer causing a blockage facilities, in someone’s home or to out-patients. Individual sessions are offered coaster of my cancer journey.” as well as group relaxation. Therapies are tailored to complement each patient’s in or damaging the lymphatic system. needs including massage, aromatherapy, relaxation, acupressure, acupuncture, reflexology, Qigong and Reiki. Lymphoedema normally affects the arms and legs. However, it can also affect other parts of the body The aim of the treatments is to give someone a sense of wellbeing, to help them to such as the genitals, trunk and face. This can be very relax and to feel calm as well as helping to ease any symptoms. distressing for patients and have a huge impact on someone’s self-esteem, while also being extremely We are looking to enhance our current offering by inviting volunteer uncomfortable and limiting mobility and movement. fully qualified complementary therapists to join our team. Should you be interested, please contact Caroline Campbell on 876555 or email There is no permanent cure. However with email@example.com appropriate treatment and advice, the swelling can be significantly reduced and patients are taught the skills to manage their condition long term. Our Lymphoedema service is a predominantly out- “My memories include the special patient service based at Jersey Hospice Care, although we do offer treatments within the In-Patient Unit and warmth and care that combined with the in a patient’s home if required. beautiful environment.” Channel Islands Premier installer Physiotherapy of altro Whiterock To some, it may seem a contradiction having a physiotherapist working cladding We are proud and with patients who are terminally ill. However, just because a patient has delighted to have a terminal diagnosis, it doesn’t mean that there is no potential for some a sPecial been chosen by Jersey functional improvement or to improve their quality of life. Alleviation, thank You Hospice to carry out rehabilitation and participation are the cornerstones, not only of palliative to camerons care, but also of physiotherapy. all their hygienic wall in bringing this Project cladding at Clarkson Rehabilitation and maintaining someone’s functioning are needed to underpin together House; in support ‘living well’ and our physiotherapists focus on offering patients realistic hope, and to all towards their vital care integrated with a pragmatic and practical approach. involved to local community. Please contact us and Treatments are offered to suit the individual’s needs. This may be individual sessions or as part of a group. Ultimately we aim to put the patient and their we will be happy to families at the heart of all we do to empower the patient to achieve their own share more personal goals. details of our service Telephone: Our physiotherapists have chosen to specialise in palliative care and are skilled in 07797 725061 a wide range of specialist interventions including respiratory care, rehabilitation, therapeutic exercise, fatigue and anxiety, mindfulness techniques, relaxation and www.chcjersey.co.uk acupuncture. We also currently run a circuits session in the gym with people attending our day care facilities on a Monday, Wednesday and Friday.
7 The In-Patient Unit Yasmin Butler, Senior Sister The In-Patient Unit provides specialist palliative care seven days a week, 24 hours a day. There are twelve beds in order to meet future demand, nine of which are operational at the present time for current island needs. It is staffed by a dedicated team of nurses and health care assistants. The nursing staff are also supported by a multi professional team including an associate specialist, general practitioners and off-island consultant advice in order to provide the care required by our patients and their families. Patients are admitted for a number of reasons such as assessment, symptom management, end of life care and respite. The Hospice is a safe haven for patients and their families where they can receive professional help to guide them with symptoms to improve quality of life. The support we offer incorporates the physical, social, spiritual and psychological aspects of care. The environment of the unit is very much geared to patients and their families spending quality time together. With this in mind, all the rooms are single with en-suite facilities and they all have patio doors opening onto the beautiful gardens and overlooking St Aubin’s Bay. Visiting is not restricted and we encourage family and friends to come and stay as they wish. Coming to the Hospice In-Patient Unit can be scary when you don’t know what to expect. There are no rights or wrongs and no set paths to follow. The team is there to guide the patient and their family, helping them to make the decisions that are right for them. There is an absolute commitment by the team to enhance a patient’s quality of life and we will always demonstrate a ‘can do’ attitude. Time spent on the In-Patient Unit is precious and each experience is very individual. Respect and dignity are key. Dr Nigel Minihane, Chair of the Primary Care Body Medical support and expertise is required across the island for patients with palliative care needs. Jersey Hospice Care and Jersey’s General Hospital have a joint appointment of an associate specialist, Dr Nicky Bailhache who works across both areas to support patients, working closely with hospital doctors and their GP. Patients are also seen by the associate specialist as out-patients and within the community. The support ranges from telephone advice to ongoing consultation and liaison with patients who have complex symptoms. Education is an integral part of the post, as the role supports all other health care professionals. Jersey Hospice Care has always worked in partnership with primary care and a patient’s GP continues to be involved in the care while someone uses our day care or in-patient facilities. This serves to improve continuity for people and it is often very reassuring to see that familiar and trusted health care professional among a lot of new faces at what can be a very difficult time. The raison d’etre of a hospice is to provide holistic care. Dame Cecily Saunders, who is credited with the birth of the hospice movement, introduced the concept of total pain: physical, emotional, social and spiritual distress with care provided in settings appropriate for the patient - ‘one who suffers’. The aim of a GP is to provide holistic care at clinics or at home which encompasses all aspects of health and social problems from cradle to grave, so naturally many principles overlap. This was recognised in 1982 when locally, a vision of shared care, with patients at the centre, was realised at Jersey Hospice Care’s first premises in Stopford Road. From the outset, GPs worked closely with nursing colleagues from both the Hospice and Family Nursing and Home Care to provide care wherever needed, day or night. The service continued and developed over the years and understandably it has become inextricably linked with the lives of most local people. The plan is to expand services yet further to include end of life care for all conditions rather than just cancer and Motor Neurone Disease and work is being done to support a GP champion - someone who will Julie Wilson, Health Care Assistant be able to step out of general practice on a regular basis to support further development. Before joining the In-Patient Unit, I’d enjoyed an artistic career for twenty years, so it was quite a change. I Funds are also being set aside to mirror national best practice of regular multidisciplinary started off doing some voluntary work and almost immediately decided that when an opportunity arose I would meetings between all members of teams caring for patients nearing the end of their embark on a career move. After a short time nursing adults with learning difficulties, I was lucky enough to be lives. In addition, besides the fantastic work of Cancer Relief, some clinical care at home offered a position at Jersey Hospice Care. will also be paid for as a result of the recent Health and Social Services White Paper. Finally, and most important of all, the above will serve to encourage the role of our patients as I am proud to work with a fantastic nursing team who work to provide and sustain a specialised continuity of palliative care partners in shared decision making so we can help them to make the right decisions at to patients and their families. Complementary therapies are an important aspect of patient care and I have been privileged their time of most need. to be part of this holistic approach where several departments are intrinsically linked to enhance patient wellbeing at a time when life can be chaotic and sad.
8 Community Teams Sharon Deans, Health Care Assistant I work with the Community sisters visiting patients regularly in their own homes. I am here to support patients and their care while making sure they are fully aware of all the services that the charity can provide. I see myself as the eyes and ears for my colleagues in the community, giving them feedback on how their patient is doing and, if Michelle Nelson, Specialist Palliative Care and Hospice at Home team leader required, drawing their attention to any changes It is often not known that the majority of Hospice’s work is carried out in the community. The Hospice Community team is usually the first point of in the patient’s health. I would also refer for any contact for patients and their families. equipment or therapies I feel that a patient may need in order to allow them to stay at home. Many people wish to spend their final days in familiar surroundings at home and, as far as possible, the team co-ordinates the care necessary to ensure this happens. We work in partnership with other healthcare Not every patient with a life-limiting illness will require Jersey Hospice Care as many patients lives will end with only the need for the excellent nursing care and professionals and together we will work to support already available from their usual generalist care providers. ensure that the patient and their family is as fully supported as possible. With the changing demographics and inevitable increase in rising expectations and aspirations of the public and professionals to provide high quality end of life care in the place of their choosing, Jersey Hospice Care recognises the need to improve the community services available to Islanders. Thus, the Hospice Community It is very humbling to be allowed into people’s Team will now be called the Specialist Palliative Care Team (SPCT) and will be divided into Clinical Nurse Specialists (CNS) and Hospice at Home. own homes. It can be difficult for patients to have to accept care and to lose some of their The CNS’ use their skills and expertise in palliative care to provide individualised care, either directly when highly complex care needs require specialist assessment, or independence but we work through that and indirectly by supporting and guiding other health care professionals to provide the care and support necessary at such an emotive time. The team understands the build a relationship. I walk alongside them in importance of meeting patients’ physical, psychosocial and spiritual needs and delivers this care with an empathic approach, embracing the patient and their family their journey from enabling them to live with as a whole. their disease, to preparing them and their family for the end of life. The SPCT works in close partnership with other health care professionals to enable patients to remain at home for as long as possible. The team is also instrumental not only in educating and empowering patients and their families to make informed decisions about their treatments and care management, but also in providing Some respond so well to treatments that they specialist education to other health care professionals. no longer need the Hospice specialist services and, with their agreement, we will discharge The Hospice at Home team supports the CNS’ and provide generalist end of life care for patients in their own homes towards the end of life. This team comprises them from our service, reassuring them that registered nurses and senior health care assistants who have received palliative care training. The team complements and supports the primary health care teams - they can contact us should they need to again GPs, district nurses and social care professionals so that appropriate emotional and nursing support is available to patients and their families in the final phase of life. in the future. The dying phase is not a dress rehearsal, we only get one opportunity to get it right - as Dame Cecily Saunders said: “How people die remains in the memories of those I have been working for Jersey Hospice Care for who live on, therefore it is vital that appropriate care needs are anticipated and implemented in time.” 23 years now and could not envisage myself working in any other area of care. I work with “I have been part of the Hospice team, almost from its conception, when it started out as a small bungalow in Grouville, 32 years ago. I feel very privileged to have a superb team who all share my passion in been involved in the Hospice’s evolving history and development and I am excited to now be leading the Community Team into the future where Islandwide palliative care and the Hospice ethos. partnership working will undoubtedly result in ongoing improvements and continued high standards of care to all those requiring specialist palliative care.”
9 Community Bereavement Service Jan Sims, Manager, Community Bereavement Service “I am so grateful; you listened to my fears and arranged an appointment Grief is normal after bereavement and most people quickly. I felt very supported, you provided me with a safe place to share manage with their own inner resources, combined with how I was feeling. Everything was well organised and professional the support of family and friends. However some people may need opportunities to review and reflect on their loss which also added to my feeling of safety. experience. I went home last week and visited my Dad's grave; it was sad and painful The Community Bereavement Service is made up of a but I coped knowing the group was there when I got back. Making a manager, a deputy manager, an administrator and a team donation to Hospice seems such a small price to pay for the gift of time of highly trained, committed volunteers who are there to provide this extra support. The service is available to adults and care that was given.” and children of all ages and is free, confidential and person- centred. The work is undertaken mainly at Jersey Hospice Care where there are comfortable, confidential rooms for private talking. Marianne Bougourd, Bereavement Support Worker A new initiative for the service is some group based work, In 2007, while studying for the Advanced Counselling Diploma at Highlands College, I came to Jersey Hospice which is known to be very cathartic for people, bringing Care for an open day to learn about the Community Bereavement Service. I then decided to join their together those with a similar experience. Groups are facilitated by trained support workers and coping with programme, training to become a volunteer to help clients who have suffered a personal loss. Besides working loss is discussed in a supportive and confidential environment. The first of such groups started recently. in my own private counselling practice, I have worked with numerous Hospice clients over the years, helping them come to terms with the death of a family member or friend. The service is also looking to provide more support for those families who are trying to cope with the diagnosis of a terminal illness and how this may affect them. Members of the team work closely with the Grieving is a personal and highly individual experience. Although feelings and thoughts are often similar, each Day Hospice and In-Patient Teams and regularly make themselves available to patients and families. person’s journey is different. What still, to this day, inspires me to volunteer at Hospice is the courage clients show by simply turning up to sessions. The first step can be the hardest. The wellbeing of staff is also very important and as well as providing in-house training for support workers, we help other agencies with training and education about loss and grief. To see how a person can move from initial shock and numbness into adjusting to their loss is inspiring and humbling. Most of the time people just need someone to talk to, someone who will listen and understand. Clients often say they don’t wish to burden their friends and family and that it is easier to talk to a stranger who listens without judgement. Whatever your grief experience, it is important to be patient with yourself and to “I thought no way can I share my grief with strangers, but I’m so glad I went. We started as allow the process to naturally unfold. a vulnerable mixture of men and women, but now we talk openly about our feelings and Grief can feel very lonely, even when you have your loved ones around. Sharing your sorrow in a group can help even have a laugh. We have become close in our loss, supporting each other and making a participants support each other and recognise their own grief in another person’s story. Some are at different connection. I am sure we will remain friends.” stages of the grieving process but can still be empathic with each other as they were once there too. I find it personally and professionally very rewarding to be part of the support worker team here at Hospice. We would like to thank Camerons for entrusting us to carry out selected carpentry and joinery works to the JERSEY HOSPICE EXTENSION Congratulations to everyone involved on the completion of this project. For more details contact: - Eastern Joinery Ph: 856608 E: firstname.lastname@example.org
10 “It’s a very caring and personal environment. You’re made to feel very welcome; you’re not regarded as a patient but as an individual” “My brother-in-law passed away free of pain thanks to you, and with dignity” www.facebook.com/JerseyHospiceCare www.jerseyhos Photographs courtesy of Steve Wellum, Karl Taylor, Steve Baudains, Kirby Lyons and the JEP.
With the number of people over the age of 65 predicted to nearly double between now and 2040, the Hospice redevelopment programme began in October 2010 in order to ensure our facilities were fit for purpose. Work was split into several phases Jersey Hospice Care to minimise disruption to patients and the four year redevelopment programme at the charity’s base on Mont Cochon is now complete. is an independent The first phase was a new building adjoining the right hand side of the original house, Les Sillettes. This building, now charity which relies named Clarkson House, comprises an In-Patient Unit with 12 ensuite bedrooms, double the number previously available; a Sanctuary and a chapel of rest; a reception area; new client rooms for the Community Bereavement Service and larger office on the generosity space for the Hospice Community sisters who care for patients in their homes. of the public to help Eighteen months later, the second phase began to redevelop the former In-Patient Unit and create a new building adjoining the left hand side of the original building – now known as the King Centre, where the Day Hospice facilities are based. fund its services. The final phase of work involved the refurbishment of the original building - Les Sillettes - where Jersey Hospice Care started Our running costs operating from in 1996. As part of this work, the former day lounge has been turned into a physiotherapy gym with adjoining complementary and lymphoedema treatment rooms. The original kitchen has been extended and modernised and the old are in excess of dining room turned into a staff dining room with refurbished and additional office facilities upstairs. £9,000 a day. If you The redevelopment programme, managed by Rowney Sharman Project Consultants and designed by Waddington Architects was estimated at approximately £15m in total. Hospice Trustees have been reserving funds for a number of would like to make years, anticipating the need for major redevelopment. Then, helpfully, in 2010 they were awarded a grant of £2.6m from the States’ Fiscal Stimulus Fund. Numerous organisations, trust companies and individuals have helped the charity fund the a contribution, remaining work, including the Michael and Ilse Katz Foundation, the Life is Precious and Buy a Brick Appeals, Pure Charity, the Association of Jersey Charities and The Jersey Freemasons among many others. please visit www. jerseyhospicecare. com or call 876555 “With your incredible support we were able to keep mum in her own house right to the end. I know she would have ‘gone’ quite content surrounded by what was familiar to her.” spicecare.com www.twitter.com/JerseyHospice
12 Redevelopment programme Marc Burton, Camerons Limited Camerons were delighted to be awarded the contract to redevelop Jersey Hospice Care’s facilities for the future and our staff have really enjoyed the project. It is never easy working in an environment which needs to continue to run its services, particularly one as caring and sensitive as the Hospice, but “Thank you to everyone from Jersey Hospice Care who with the project being completed on time this shows the understanding between the respective teams in working together. was involved with us and mum and for the kind help in Fundamentally the construction methods and materials used are similar to a large number of projects. making her wish to die at home with dignity happen.” The location and environment are the key differences and the project required a much more methodical approach to co-ordinating and managing the works. Enabling the Hospice to operate as normal was particularly challenging with the construction of the new kitchen and the transfer from the temporary arrangements to the new permanent buildings. Jersey Hospice Care now has a first class, modern facility of which all involved can be very proud. Stewart Rowney, Project and Development Manager Everyone has worked tirelessly and our thanks go to the design team, sub-contractors and suppliers for their part in making this happen. Supporters of the charity are used to undertaking challenges on behalf of Jersey Hospice Care but this time the ‘challenge’ was being undertaken by the Hospice itself. The ambitious development of an estimated £15 million facility to meet the needs of Jersey’s community in the “I am honoured to be a trustee. I feel 21st century has been undoubtedly one of their greatest challenges to date. humbled by the love and care given by the From the outset, our aim was to create a culture of engagement and inclusion across the project and to involve staff, volunteers and patients in the design process so the programme could fully staff and volunteers.” reflect their vision, future aspirations and the clinical requirements. The migration of patients from the old Clarkson House into the new In-Patient Unit at the end of the second phase of the programme was planned by the hour with enormous thought from medical and support staff, ambulance teams, volunteers and the project team with numerous contingency plans being put in place to manage the risks of such a sensitive patient relocation. Bruno Fransico, Waddington Architects Changes to specifications from the ever evolving health sector provided numerous challenges during the five year development plan. Integrating these into the tight development programme The original Jersey Hospice Care facilities operated from what was best described as a large was achieved by working closely with the design team and Camerons, the project contractor, in house, making the experience for patients and visitors personal and non-institutional. The order to incorporate them into the overall construction programme as seamlessly as possible. scale of the new buildings, the additions and interior spaces needed to reflect the homely and comfortable surroundings that patients were familiar with. Renewing the old kitchen as part of the project required a temporary ‘field kitchen’ to be established for six months outside, throughout one of the windiest and wettest winters on In order to keep the existing ambience and domestic feel, we limited the scale to two storeys with record. Notwithstanding this, not a single patient meal was provided late, nor cold, thanks to low profile roofs and the same materials were chosen for each of the three phases, to harmonise the commitment of the catering staff which was a true testament to their understanding of the the buildings. We began with the design of the 12 bedrooms on the new In-Patient Unit and the project challenges and their importance in the whole project team. design is spread out, so they appear to ‘open up’ to splendid views of St Aubin’s Bay and Elizabeth Castle. Each one has a covered porch so that people can sit outside in good weather. The King Rowney Sharman is proud to have had the opportunity to manage this wonderful and vital Centre is laid out with new spaces flowing from one to the other, from the Pure Charity coffee future facility for the people of Jersey. shop through the lounge and outside into the landscaped gardens. This promotes a relaxed and friendly atmosphere for visitors and patients to drop in. The design concept is simple and organic, using largely natural materials and the setting is thoughtfully landscaped. The architecture provides a feeling of shelter, warmth and calm - but essentially remains in the background, with the main emphasis on maintaining the caring provision and friendly atmosphere which is integral to the services Jersey Hospice Care provides. “The Hospice has made a huge difference to my life and my family’s life, so thanks to all the supporters who donate and raise money to enable Jersey Hospice Care to provide the services they do for people like me.”
13 Support Services Housekeeping The Hospice Housekeeping team operates from 8am - 4pm. Duties include cleaning bedrooms, communal areas and offices, washing, ironing, flower arranging, chatting to patients, interacting with families and making lots of cups of tea. “It’s very humbling and of course some days are harder than others; we get to know everyone who comes in and we’re touched by all of them and their families and friends. The two washing machines never stop – we do all the laundry; bedding, towels, patients’ clothes and staff uniforms in house and we must do about 20 or 30 loads a day. It’s the small things that can make a difference too – having a fresh bed and clean clothes can help someone feel better. It’s creating quality time for people as we take away the worries of nursing care, cooking and housekeeping and Catering team The challenge for the team is catering for different people at different stages of everything else which can be an added Collectively between the team there is more than 50 years of experience within the their illness while trying their best to fulfil nutritional requirements. For many, eating burden when it’s already a struggle to kitchen at Jersey Hospice Care. is very much a social event. It is especially rewarding when people haven’t had an cope with the illness.” appetite or haven’t been able to eat for a long time. Getting it right can mean such a A typical day starts at 7am cleaning up the overnight dishes, organising the coffee lot at what can be a very difficult and sad time. The chefs and catering assistants do shop and preparing for the day’s meals. Three course options for lunch and dinner their best to provide people with what they want, when they want and celebratory Administration are always available as well as sandwiches, salads and soups. Meals are provided lunches and birthday cakes are also often requested. free of charge to patients, in line with all of the other services Jersey Hospice Care Patient services would not be possible offers. Menus are set daily and then there are variations to suit individual needs; The volunteer kitchen assistants are invaluable to the team, helping to deliver without our support teams. The small vegan, vegetarian, soft appetites, diabetic or gluten free for example. food to the In-Patient Unit or serving meals in the lounge for the day patients and Admin team provides support to teas and coffees. Staff and volunteer meals are also provided as well as catering Jersey Hospice Care staff, volunteers, The team usually gets to know people on the In-Patient Unit and in the Day for fundraising events, meetings, open afternoons, Battle of Britain cream teas and patients and their families and is Hospice setting quite well so they can then cater for their likes and dislikes. Families Christmas lunches, visitors and volunteer gardeners and individuals or groups from responsible for all the administration and friends are often fed as well, especially those who may be visiting from the UK local businesses who come to show their support. And more recently, there has and account activities vital to the and spending a lot of time with loved ones. been the provision of food for external groups and organisations hiring out the smooth running of the charity. charity’s new training facilities. A member of the Administration team is also typically the first point of contact for those ringing or calling the Hospice. Other work undertaken includes human resources administration and support, managing the payroll for permanent and bank (temporary) staff, maintaining the patient record and invoice and procurement systems and recording and thanking donors. Human Resources It is important for any organisation to treat staff, both paid and volunteers fairly and equitably and to follow good HR practices. As well as creating a robust employment framework, it is also important that HR provides support and advice where needed. We are very lucky to have highly skilled and dedicated staff and volunteers who are passionate about the work they do and will often tell you that it is a privilege to work here. There is also a real ethos of Facilities Management people looking after each. No matter what “I cannot think of a better place for my dad to have spent his role you undertake at Hospice, patients and their families are always at the heart The Facilities Manager ensures that all mechanical services, from the air conditioning to the utility last few weeks. The staff became like a second family to us in of all we do and it is this that makes us all proud to work within such a great team. supplies are all functioning correctly and that all the care and support they gave during that time. ” support services from Sky TV to the coffee machine are working. Finance “Now the building works are complete, I can now Every month Jersey Hospice Care concentrate more of my time on promoting and Trustees and team leaders receive facilitating the hiring out of the training rooms in bespoke reports which provide an the education suite. update on the current financial position. The final accounts are produced early I feel very privileged to be working at Jersey each year and we are grateful to Ernst Hospice Care. There is satisfaction in knowing that and Young, our auditors who do this something as simple as fixing a TV gives a patient for us. Detailed budgets are prepared pleasure during their last few days.“ annually to coincide with the business plan as well as a longer-term financial plan, to enable Council Trustees to be If you would like to hire the Hospice training/ aware of the financial outlook, so they meeting rooms, for up to 80 people, you can can take any necessary action on a do so for a reasonable charge. Contact Joe on timely basis. 876555 or email email@example.com
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