Receiving palliative and end of life care at home in North Ayrshire Information for you Follow us on Twitter @NHSaaa Find us on Facebook at www.facebook.com/nhsaaa Visit our website: www.nhsaaa.net All our publications are available in other formats 2 What is palliative and end of life care? When someone has an advanced life threatening illness that can’t be cured, palliative care helps to improve the person’s, and their family’s, quality of life as far as possible by managing their symptoms. This also includes psychological, social, and spiritual support for the person and their family or carers. This is called a holistic approach. End of life care is support for people who are thought to be in the last year of their life and should help the person to live with dignity until they die. Who provides palliative and end of life care? Many community based healthcare professionals provide general palliative care to people who want to remain at home. Some people need additional help with improving distressing symptoms caused by illness. This may be provided by consultants trained in palliative medicine and/or specialist palliative care nurses, this is known as specialist palliative care. The Ayrshire Hospice also provides specialist palliative care and advice to professionals, as well as support to the person and their family. Access to specialist palliative care advice is available through the person’s Family Doctor (GP) and/or district nurse. 3 Anticipatory Care Planning (ACP) The professionals involved in providing palliative and end of life care will ask about a person’s wishes and preferences for their care. These will be given careful consideration and professionals will work together with you and the person you are caring for. This is known as Anticipatory Care Planning, planning ahead for the care the person may require to meet their wishes. Who provides end of life care? When being cared for at home or in a care home, the person’s GP has overall responsibility for their medical care. Community nurses usually visit the person at home and family and friends can be closely involved in caring too. Several different professionals within health and social care teams may be involved in providing palliative and end of life care, depending on the person’s and their family’s needs. For example, hospital doctors and nurses, GPs, community nurses, hospice teams, social workers, social care staff, physiotherapists, occupational therapists, community pharmacists and complementary therapists can all be involved. This forms a Multidisciplinary Team (MDT) who work closely with your GP practice. 4 What is available in North Ayrshire? North Ayrshire has services available to support and help provide care for anyone who would like to remain in their own home for their end of life care. These services often compliment the care provided by family members. General Practitioner (GP) When a person has been under the care of a hospital team, information about their care, treatment and management will be sent to their registered GP. If the person has moved from another health board or has received treatment or investigations outside of Ayrshire, this information may not be readily available to healthcare professionals in Ayrshire. It is important to inform the hospital team of any change in GP practice to enable appropriate transfer of information. The GP will liaise with the district nursing service for assessment of the person’s needs and the support that you, as the main carer, require. The aim of this support is to allow the person to remain at home for the remainder of their care or for as long as possible. District nursing The daytime (8.30am-5pm) district nursing team in North Ayrshire is divided up into five teams: North West Coast; Garnock Valley/Kilwinning; Irvine; Three Towns (Ardrossan, Saltcoats, Stevenston); and Isle of Arran. 5 The district nurse will arrange to visit the person you are caring for once he/she is home. The district nurse will assess the person’s care needs and discuss with you both what is available now and anticipate changes in care needs and/or services in the weeks or months ahead. Being aware of any possible changes that may occur may prepare the person and their family/carers for a change in services. Things you may discuss: • Management of symptoms – Any changes in the person’s daily condition, including how to administer medicines, must be discussed with the GP and district nurse. If you need advice or information on medicines, please ask your local Community Pharmacist. • Personal care – Help with toileting, washing and dressing. • Additional resources - This could be a visit from the occupational therapist to assess your home for additional fitted or practical equipment (for example a shower chair, commode, a mobile hoist or a hospital bed). A physiotherapist may also be asked to provide treatments and assess the mobility of the person you are caring for. • Social Work – You may require help to get to appointments or events outside of your home. You can discuss with the district nurse or social worker. 6 There may be local charities that can provide you both with support and help. Care and Support North Ayrshire (CareNA) is an independent website connecting everyone to information about care and support. You can visit the website at www.carena.org.uk. • Psychological care – You may feel you want to discuss how you feel with someone. Your own GP can support you with this and direct you to additional help if required. You can visit www.carena.org.uk to access this support. • Spiritual care – You may have your own spiritual support from a religious community or advisor. There are local charities such as Ayrshire Cancer Support, http://www.ayrshirecs.org, who offer counselling services and complimentary therapies which may help with spiritual well being. Care & Support. North Ayrshire, www.carena.org.uk, can also provide the information to access services in North Ayrshire. Social services There are locality teams within each of the areas of North Ayrshire. The locality teams may undertake an assessment of what is needed to enable you to remain and be cared for in your own home. Locality teams are based in Irvine, Kilbirnie, Saltcoats, Largs and Lamlash. You can access these teams from Monday to Thursday between 9am and 4.45pm and on Fridays from 9am to 4.30pm. 7 Social work Social work may be appropriate to provide you with support and counselling at this time, as well as ensuring that your income is maximised if this is appropriate. Care at home Some people lose independence after an illness or a spell in hospital due to disability, visual impairment, or simply becoming frailer. The Care at home service will provide person-centred care to ensure safe, high quality care and support in partnership with the individual, their families and carers. The staff will deliver the service to ensure that the outcomes that are important to the individual are met. The Reablement Team This team was established to improve outcomes and the quality of life for the person, and their family/ carer, who require this service. The aim of this service is to: • prevent admission to hospital or a care home; • provide early supported discharge from hospital; and • promote multidisciplinary intervention to allow people to stay in their own homes for as long as possible. This team includes physiotherapists, occupational therapists, community pharmacists and community staff 8 nurses. They work closely with hospitals, social services, GPs, community staff and the ambulance service. After assessment by the reablement team, goals and time scales will be discussed with the person to maximise their potential and independence. Equipment to aid mobility and to make daily living easier is available. The reablement team will work with the person to help them learn, or re-learn tasks, so that they can remain independent in their own home for longer in a way that is both safe and practical. Reablement can last up to 12 weeks and progress is monitored throughout this time. The Ayrshire Hospice The Ayrshire Hospice has a wide multi-professional team , known as a Specialist Palliative Care Team, based at the hospice. They work closely with both hospital and community teams on an advisory basis. The specialist palliative care team provide support for the person and you as their carer, and work on an advisory basis. Any suggested changes to the person’s care will be agreed with the person and their primary care team (their GP and district nurse). Inpatient unit at the Ayrshire Hospice The inpatient unit has the facility to provide care for 20 patients in a mix of single and shared rooms. Patients can be admitted for multidisciplinary symptom assessment, care in the last days of life and planned 9 respite. We also provide 24 hour advice to patients and health professionals. We offer a relaxed and homely environment where visiting times are open, enabling families to spend as much time together as they wish. Thera are extensive gardens where patients can enjoy spending time outside. Role of the community specialist palliative care nurse The community Specialist Palliative Care Nurses (SPCN) are a team based at the Ayrshire Hospice. The SPCN role is an advisory and supportive one. Each SPCN is responsible for managing a caseload within a geographical area of Ayrshire, visiting patients and families, in their own home. They carry out a full holistic assessment and provide advice to to the primary care team regarding medication as well as offering advice on managing symptoms such as pain relief. The SPCNs can also provide additional emotional support that can help patients, carers and families cope with illness, treatment, fears and worries.