Support services for patients with secondary breast cancer.
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1 Sheffield Teaching Hospitals NHS Foundation Trust Support services for patients with secondary breast cancer. Secondary breast cancer pledge: working together to improve secondary breast cancer services Working together to improve secondary breast cancer services in your hospital COOL119_Western park booklet.indd 1 30/11/ :31
2 The Breast Team at Weston Park Hospital are already proud of the care they provide for Secondary Breast Cancer patients but recognise that there are always improvements that can be made and are committed to ensuring that the service given to patients is the best it can be. It has been a very positive experience working in partnership with our patients in developing this Pledge and we are looking forward to continuing to work together in the future to provide an excellent service. The Breast Care Team Your care at Weston Park Hospital 3 Our Clinical Nurse Specialist Service 4 What is a Holistic Needs Assessment? 4 When can I see my breast clinical nurse specialist key worker? 5 Your healthcare team 7 Your treatment and care 7 Other services your CNS can help you access 9 The Hospital Palliative Care Team 10 St Luke s Community Team 11 The Clinical Trials Team 12 Do your bit 13 We re working on it 13 Other support organisations 14 Breast Cancer Care 14 Breast Cancer Now 15 Weston Park Hospital Whitham Road Sheffield S10 2SJ Phone: COOL119_Western park booklet.indd 2 30/11/ :31
3 YOUR CARE AT WESTON PARK HOSPITAL We re working hard to make sure you are happy with the treatment and support you receive. However, we know from national research that sometimes people with secondary breast cancer don t receive the support and care they need, and that the way services are organised and delivered can sometimes be confusing and difficult to find your way around. That s why we re working with Breast Cancer Now and Breast Cancer Care on our Secondary Breast Cancer Pledge. The Pledge gives patients the opportunity to speak up about what matters most to patients about your local service and help improve these things. Where we could do better With most things there s room for improvement, and services for people with secondary breast cancer are no different. That s why we ve asked our patients to fill in surveys and talked to them about their experiences to help us understand what is important for them. This booklet tells you what you can expect from Weston Park Hospital as well as the improvements we are making. It is based on both national guidelines and what Weston Park Hospital patients have told us needs to be improved. Not all the improvements suggested can be done overnight, so on page 13 you ll see a list of what we re working on at Weston Park Hospital in the long term. Talk to us You ve probably got your own ideas on what would improve your care. If you have, let us know. By telling us what you want, you ll be helping to develop and improve the services we offer to patients with secondary breast cancer. Secondary Breast Cancer Pledge 3 COOL119_Western park booklet.indd 3 30/11/ :31
4 OUR CLINICAL NURSE SPECIALIST SERVICE The breast cancer Clinical Nurse Specialist (CNS) team at Weston Park are nurses who specialise in breast cancer nursing and palliative care. They work as part of a team helping to support people who have secondary breast cancer. This means the primary cancer in your breast has spread to another part of your body. When secondary breast cancer is diagnosed it can be a difficult time for you and your family. The CNS Team can offer a range of help and support during this time and in the future. Our team also provides an outreach service at Chesterfield Royal Hospital. You will be introduced to a named Clinical Nurse Specialist who will act as your keyworker Your Clinical Nurse Specialist keyworker is: Name Phone Your keyworker can support you by: Providing emotional support and time to talk over your concerns and worries Giving support to your family or carers Providing information and advice about your treatment Providing information and advice about any troublesome symptoms that you may have Providing information for children Helping you to identify sources of practical help Carrying out the assessment and management of mild to moderate lymphoedema Identifying other specialised professionals who may be able to give further support to you Acting as a link between hospital and home Referring patients who live outside of Sheffield to appropriate specialists who can support them locally Offering a holistic needs assessment 4 Secondary Breast Cancer Pledge COOL119_Western park booklet.indd 4 30/11/ :31
5 What is a holistic needs assessment? A holistic needs assessment gives you the opportunity to talk about your concerns with your CNS. This can be physical, emotional, family or social, religious or spiritual, treatment related, or any other worries you may have. A holistic needs assessment helps your key worker to help you. If you would like to book an appointment for a holistic needs assessment please talk to your key worker. Additionally you can use your my patient record from your resource pack to discuss any concerns with your CNS at your clinic appointment. When can I see my breast clinical nurse specialist key worker? The Breast Clinical Nurse Specialist (CNS) support service can be provided face to face or on the phone. If you are attending Weston Park Hospital you can see the Breast CNS in clinic, on the ward or when you attend for treatment. If you are attending Chesterfield Royal hospital you can see your Breast CNS in the Thursday clinic. You can ring the CNS Team to arrange to see them or ask one of the nurses or radiographers looking after you to contact them. Sometimes your key worker CNS may not be able to see you when you attend your clinic appointment. If this happens, you can ring them if you want to talk with them. You can also make an appointment to see your key worker outside of the clinic. You can contact the breast CNS team on the following number: If a nurse from the breast CNS team is not available when you ring please leave a message and they will return your call as soon as possible. Secondary Breast Cancer Pledge 5 COOL119_Western park booklet.indd 5 30/11/ :31
6 Your breast CNS team are here to provide you with a full range of help and support throughout your illness. 6 Secondary Breast Cancer Pledge COOL119_Western park booklet.indd 6 30/11/ :31
7 Your healthcare team You will receive a multidisciplinary team approach to your care, which means that all healthcare professionals who contribute to the medical and nursing management of your care meet regularly to discuss your situation, so that you receive the best care for you. Your team includes members of the oncology and palliative care teams to ensure all aspects of your care are considered. To make sure you get consistent care between the hospital and community services, communication between the hospital-based team and your GP (local doctor) will be as efficient as possible. Your GP will be informed and kept up to date about your condition and will be able to provide support and care when appropriate. You can decide whether you get copies of letters sent to your GP about your treatment. Sometimes when you attend clinic you may be assessed by one of our chemotherapy nurses or pharmacists. You can ask to see your breast CNS key worker if you wish. Your treatment and care You will be given timely information on all aspects of your treatment and care both verbally and in writing. This includes a care plan and information about the purpose of your treatment, the side effects, and the potential impact on your wellbeing. When any new treatment is proposed, you ll get written information about its potential benefits, risks and side-effects, with time to decide whether you want it. Any treatment you have will be explained to you beforehand and you can ask questions. Your information needs should be assessed on a regular basis and updated information provided about your diagnosis, test results and treatment plan, whenever any of these change. Support should be provided alongside all information given. Your Breast CNS can put you in touch with different members of our multi-disciplinary team who can offer you additional support (please see page 9). Secondary Breast Cancer Pledge 7 COOL119_Western park booklet.indd 7 30/11/ :31
8 All the information you get should be right for you, whether that means it is in Braille, recorded, or in your chosen language. Your healthcare team will talk to you clearly and sensitively, using words you understand. You will have access to all appropriate treatments and where appropriate, be made aware of the availability of clinical trials for which you may be eligible before treatment is started or changed. You can be as involved as you want to be in decisions about your care and treatment. However much involvement you d like, your options will be clearly explained and you ll get the time, information and support you need to make your decision. You can expect to be treated somewhere clean and safe. Some medicines you might be taking could interact with your treatment. Tell your consultant about any medicines you are taking, including complementary medicines. Your treatment plan has been designed specifically for you. If you have any concerns, please discuss these with the team caring for you before stopping or changing your agreed treatment plan. If you do decide to stop treatment, you can do so at any time and your decision will always be respected. You can ask for a second opinion about your diagnosis and treatment. If you want a second opinion, you can talk to your clinical nurse specialist about how to do this. 8 Secondary Breast Cancer Pledge COOL119_Western park booklet.indd 8 30/11/ :31
9 Your Breast CNS can link you to a wide range of services, depending on your needs and wishes Oncologist (early appointment) Clinical Psychologist Social Worker/ Occupational Therapist/ Physio Charities such as Willow Foundation Discharge liaison Benefits Adviser Genetics Living with Secondary Breast Cancer meet-ups Lymphoedema service GP/District Nurse Complementary Therapies Hospital specialist palliative care team Bereavement services for relatives Community specialist palliative care team Chaplain Cancer Support Centre Secondary Breast Cancer Pledge 9 COOL119_Western park booklet.indd 9 30/11/ :31
10 The Hospital Palliative Care Team The Specialist Palliative Care Team can see people on the ward or in the Outpatient Department in one of the Consultant Palliative Care clinics. They also work closely with the Community Palliative Care services and can help refer onto this service. Palliative Care can be provided alongside treatment, not just towards the end of an illness. Your Breast CNS Team works closely with the Palliative Care Team and they can refer you if they feel input from the Specialist Palliative Care Team would be helpful. The Specialist Palliative Care Team can support you at any stage of your illness. Palliative Care aims to improve the quality of life of people (including carers) affected by serious illness, by paying attention to physical, psychological, social and spiritual concerns. At Weston Park Hospital the Specialist Palliative Care Team is made up of doctors and nurses who work in partnership with your Oncologist, Breast CNS and the ward team to support you with symptom control, emotional concerns and help with planning for the future. 10 Secondary Breast Cancer Pledge COOL119_Western park booklet.indd 10 30/11/ :31
11 St Luke s Community Team St Luke s Community Team work across the whole of Sheffield. They take their specialist palliative care knowledge and expertise out into the community, and they are part of a wider team of doctors, nurses, therapists and healthcare professionals. The service operates 7 days a week and provides same day face-to-face assessment and interventions for patients and their families requiring urgent assistance. The team works closely with patients and families and visits them in their own homes, including residential and nursing homes, throughout their illness to enable them to have the best possible quality of life, relief from symptoms and flexible choices about where they are looked after. Each patient has their own designated community specialist palliative care nurse, who assesses both the patient s and family s needs and can provide highly specialised knowledge, support and advice to them and other health care professionals caring for them. They also provide emotional and psychological support to patients and their families and can give home-based access to other St Luke s services depending on their individual needs. The Community Team works in partnership with GPs, district nurses, hospital consultants, specialist hospital nurses and other health professionals to develop tailor-made programmes of care that meet the individual needs of each of their home-based patients. They are unable to provide intensive home nursing or help with daily physical care, but if a patient requires this level of nursing, they can help organising this through the District Nurse or Sheffield s city-wide intensive home nursing service. Secondary Breast Cancer Pledge 11 COOL119_Western park booklet.indd 11 30/11/ :31
12 The Clinical Trials Team We are fortunate in Sheffield to have the Cancer Clinical Trials Centre within Weston Park Hospital; a renowned centre of excellence for cancer research which includes a dedicated research team and a bespoke treatment suite for new therapies. We are involved in local, national and international cancer research in order to develop more effective cancer treatments for patients. These include new medications and methods for performing surgery and giving radiotherapy, along with new drugs to combat side effects of treatment. All the treatments you receive now are due to previous research. The success of our research depends upon the willingness of patients to enter into research studies. We have numerous trials open at Weston Park and they may offer additional treatment options during your cancer therapy. Although trials are not for everyone we firmly believe it is your right to be informed of opportunities that may be available to you. If you wish to know more or are interested in participating in a clinical trial then we encourage you to discuss this further with your cancer physician who will be able to put you in touch with the research team. If you decide to have a clinical trial treatment you will be allocated a research nurse to support you. While you are on a trial you won t see your breast CNS key worker as much. However, they will still be available to you if you need them and you can phone them on their usual number. Your breast CNS will re-connect with you when your trial treatment is completed. 12 Secondary Breast Cancer Pledge COOL119_Western park booklet.indd 12 30/11/ :31
13 We re working on it Secondary Breast Cancer patients at Weston Park Hospital spotted these areas where we could do better. Here s what we plan to do and when. What you told us You wanted more information about talking to children and dependents You wanted more information about Clinical Trials You wanted to be told about Palliative Care Services You were concerned that GPs did not refer patients for scans/ investigations early enough You wanted ongoing opportunities to feed back your views on our services What we re doing about it We are producing information packs so we can let you know about services for your children and carers We do talk to you about this, but we are going to regularly check back with you that your information needs in this area are met We have included a section in our new booklet to help remind you about our Clinical Trials at Weston Park Hospital We will ensure we introduce Palliative Care Services to you when we initially meet you and will include a section in our new leaflet to explain what Palliative Care is and how we work as a team with you We are working with our Oncology Consultant Team on an education package/ secondary breast cancer awareness poster for GPs to raise awareness of secondary breast cancer signs and symptoms A CNS will attend a Living with Secondary Breast Cancer meet-up at least once a year to actively seek feedback from patients. At other times, or if you don t attend, you can give any comments or suggestions directly to your CNS When we re aiming for Dec 2017 Feb 2018 Dec 2017 Dec 2017 Oct Dec 2018 June 2018 Secondary Breast Cancer Pledge 13 COOL119_Western park booklet.indd 13 30/11/ :31
14 Other support organisations Weston Park Cancer Information and Support Centre 23 Northumberland Road Sheffield S10 2TX Breast Cancer Care Free helpline Monthly Living with Secondary Breast Cancer meet-ups Cavendish Centre for Cancer Care Lymphoedema information and support network Chesterfield Royal Hospital Ashgate Hospice www. ashgatehospicecare.org.uk Nenna Kind complementary therapies and benefits advice Secondary Breast Cancer Pledge COOL119_Western park booklet.indd 14 30/11/ :32
15 Breast Cancer Care We are the only UK wide charity providing care, information and support to people affected by breast cancer. We know that after a diagnosis of secondary breast cancer, nothing is ever the same again. That s why we provide specialist support and information services for people who have been told their cancer can no longer be cured. Our clinical expertise and emotional support network help people find a way to live with secondary breast cancer, making the most of every day. Across the UK we give people the chance to meet regularly with others with a secondary breast cancer diagnosis face to face or online to share experiences and support. Our information is used in breast care units across the UK, including our Secondary Breast Cancer Resource Pack. We provide opportunities for secondary breast cancer nurses to develop their skills and share best practice and we press for improvement at all levels of the NHS and government. To find out more visit breastcancercare.org.uk/secondaries or call our free Helpline for support and information on Breast Cancer Now We re Breast Cancer Now, the UK s largest breast cancer charity and we re dedicated to funding research into this devastating disease. At our heart we have a clear aim: to make sure that, by 2050, everyone who develops breast cancer will live. But it s only by standing together with all those affected by the disease, and speaking together with one clear voice, that we ll make it happen. Right now, people all across the UK are giving their time to make sure our work can continue whether that s raising money, increasing awareness, making their voices heard or improving the way our society views and responds to breast cancer. And the more people who join us, the sooner we ll stop women dying. To find out more, go to breastcancernow.org Secondary Breast Cancer Pledge 15 COOL119_Western park booklet.indd 15 30/11/ :32
16 Breast Cancer Now Ibex House Minories London EC3N 1DY breastcancernow.org Breast Cancer Now is a charity registered in England & Wales ( ), Scotland (SC045584) and the Isle of Man (1200). Breast Cancer Care Chester House 1 3 Brixton Road London SW9 6DE breastcancercare.org.uk Breast Cancer Now is a charity registered in England & Wales ( ) and Scotland (SC038104). COOL119_Western park booklet.indd 16 30/11/ :32
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