Receiving Palliative and End of Life Care at Home in North Ayrshire

Receiving palliative and end of life care at home in North Ayrshire

Information for you

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. They may advise on other hospice services which may be of benefit. They have a key role to play in communicating and liaising with other healthcare professionals involved in a patient’s care such as the GP and district nurse.

Access to the SPCN team is by referral to Ayrshire Hospice from a GP or other health or social care professional. Following referral, a team member will

10 undertake a holistic assessment to identify the needs of the patient and their family and will agree on an individualized plan of care.

Solas Day Services This is provided by the Ayrshire Hospice and includes physical, practical, emotional and spiritual support to people with a life-limiting illness offering a wide range of services that are tailored to their individual needs. Solas day services include, outpatient assessment, physiotherapy, occupational therapy, complementary therapy, hairdressing including Headwayr,family and bereavement support services, spiritual care, therapy and interest groups. Your Day, Your Way is a 12 week, person-centred programme tailored to meet the needs of each individual patient with life-limiting illness and their family. The aim is to improve quality of life by helping patients to take control of their lives, encourage self-management and achieve their own personal goals - however small. There is also a Drop In Cafe every Wednesday, 10am - 3pm and Carers Cafe, 2-4pm Friday afternoons. Respite and response This is provided by the Ayrshire Hospice and offers support to people with a life-life-limiting illness and their carers at home. The team help people who want to be cared for at home, by offering their carers the support and rest they need to look after them. 11 Practical arrangements

Community alarm The community alarm/telecare service is an emergency service that assists people of all ages who need some extra support to live safely at home. It is available to anyone who lives in North Ayrshire and gives the person, their carer and/or family peace of mind that assistance is available in an emergency, any time of the day or night.

An alarm unit is installed by connecting it to the telephone line in the person’s home.

All alarm calls result in an immediate voice contact being established with highly skilled operators at the response centre 24 hours a day, 365 days a year. The operator can speak to the caller through a speaker system, assess each situation and decide on the most appropriate action.

Equipment An assessment of the person’s need for additional equipment to aid their care at home will be carried out either by their district nurse or the duty worker for North Ayrshire local authority who will assign this request to an appropriate team member.

The NHS Ayrshire & Arran equipment store and the North Ayrshire local authority have separate arrangements in place for procurement and supplying of equipment and

12 services. Delivery and uplift of equipment will usually be during Monday to Friday between 9am -5pm and will be provided as soon as possible, except during the weekend and during public holidays. Families should have the person’s room and routes to their room cleared as much as possible to allow delivery.

Medicines The doctor or senior nurse involved in the person’s care will prescribe medicines in order to improve the symptoms that they are experiencing, such as pain or sickness.

Sometimes the GP or nurse will prescribe medicines to have in the house in case they are needed, particularly out of hours or in an emergency. These are known as “Just In Case” medicines and may ensure quicker access to medicines when they are needed.

Your GP and/or district nurse may discuss the benefit of delivering medicines using an ambulatory syringe pump. This pump is used when the person is finding medicines by mouth difficult to swallow or may manage symptoms more effectively.

The symptoms and responses to these medicines will be reviewed daily, usually by the district nurse who will liaise with the GP and /or specialist palliative care nurse or team.

13 If the medicines change the person’s main carer may be asked to collect more and sometimes different medicines from a community pharmacy. At times this collection may be outside normal working hours and a different community pharmacy may be open, for example during the weekend or nighttime. It is advised that you should have someone else available who can collect these medicines as needed. Your district nurse will have information on which pharmacy you should visit to collect the medicines.

Medicines which are no longer needed can be returned to your community pharmacy for safe destruction.

Talk to your community pharmacist about any difficulties you may have around taking or giving medicines and they can offer advice.

Try to go to a regular Community Pharmacist so they can have a complete record of medicines supplied and let them know what is happening at home. This can make it easier for them to provide support and signpost you to other information or services.

Overnight care During the time a person is being cared for at home there are services available outside normal working hours, listed below.

14 • GP - Out of hours service is available through Ayrshire Urgent Care Services (AUCS) and can be reached through NHS 24 by telephoning 111. • District nursing - Out of hours service will be available for all patients who are receiving palliative care at home. Community nursing staff will be available to support patients and their carers and/or families between 5pm and 8am. District nursing staff from the out-of-hours nursing team are based at a satellite centre at Ayrshire Central Hospital from 5pm to 11pm, and 10pm to 8am based at the Lister Centre Crosshouse. Calls from patients or their families to the district nursing staff will go to a Single Point of Contact (SPOC), telephone: 01563 545544. Information from these calls will then be passed on to district nursing staff. • Marie Curie Nursing Services – Marie Curie Nursing Services helps people living with a terminal illness and their families make the most of the time they have together by delivering expert care, emotional support, research and guidance during the night. Marie Curie Nursing Services can be accessed through the daytime district nursing service. • Social work – There is an Ayrshire wide social work service which operates out with office hours and over the weekend. This service liaises with other professionals who provide support.

15 As end of life approaches Dying is generally a peaceful process although as natural as end of life is, dying, and caring for the person dying can be frightening. Anxieties regarding what will happen next can be heightened. It may help to talk to the professionals involved and tell them how you are feeling as a carer of someone whose life is ending and what kind of help you think you need.

The professionals involved in caring for you and the person who is dying will listen to you and provide you with the support that you need with details where you can access additional help and support.

If you are worried or if you are noticing changes, contact your district nurse or GP. They can visit and provide additional medicines to help manage distressing symptoms, and discuss any concerns you have.

When the person has become completely unconscious and unable to respond, they may still hear your voice. It can be comforting for you to keep talking, telling them what is happening or just being in the room sitting with them, gently touching their hand. Having access to a religious or spiritual adviser at the time may be helpful. You may want to inform other family members so that they are with you at this time, if this would support you.

Mostly the final moments of life will be peaceful with the person’s breathing becoming even slower with longer pauses between each breath.

16 This may seem like a very long time. Finally the person will stop breathing altogether. Often it can be difficult to know if the person has died as their body begins to relax.

You will need to inform the person’s GP or district nurse who will come and verify that the person has died and discuss with you what you need to do next and provide you with written information booklet ‘When someone has died’. This has easy-to-follow information about what you need to do and what you should think about, immediately following a person’s death.

Should death occur out with GP hours and reported as “sudden” or “unexpected” to 999, the police will be requested to attend. Don’t be concerned about police presence, they will be very supportive but have to complete certain formalities. This may happen even when the person being cared for is known to be palliative. Police will ascertain if death was due to medical causes and may use the term “medical death” which enables your loved one to be removed from the home without need for doctor to attend.

Death will usually be confirmed within 24 hours or after a weekend to enable the death certificate to be issued.

17 Bereavement As well as the practical issues, the death of someone close brings a whole range of feelings and emotions. Grief can be expressed in differing ways and may not become apparent immediately following the loss of a loved one. There is no set process for grief, it is normal to feel different emotions. Which may include some, or all, of the following: numbness, disbelief, anger, anxiety and distress, sadness and loneliness.

Talking to family and friends about how you feel may help, but some people prefer to talk to someone outside of their immediate circle of family and friends.

You may receive or request a visit from your GP, district nurse, community specialist or SPCN. You can discuss with them how you are feeling and coping at this time. They may also ask to contact you again a few weeks after the person’s death to discuss how you are feeling and coping.

If young children or teenagers are part of the family circle, they may have many different types of emotions which can affect their behaviour over time. This can be difficult to cope with on top of your own emotions. There is support available and some helpful resources online such as Winston’s Wish - www.winstonswish.org.uk.

18 Sometimes understanding more about the nature of grief, and hearing how others have coped, can be helpful. There may be support groups for the bereaved in your local area.

The Ayrshire Hospice provides psychological and counselling support to individuals and families who are affected by illness or bereavement. To self-refer please call 01292 269200.

For further enquiries please contact: North Ayrshire Health and Social Care Partnership. Cunninghame House, Irvine KA12 8EE

Telephone: 01294 317700

19 All of our publications are available in different languages, larger print, braille (English only), audio tape or another format of your choice.

Tha gach sgrìobhainn againn rim faotainn ann an diofar chànanan, clò nas motha, Braille (Beurla a-mhàin), teip claistinn no riochd eile a tha sibh airson a thaghadh.

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Last reviewed: October 2018 Leaflet reference: MIS17-150-GD PIL code: PIL 17-0337