Palliative services in Northern Trust area

It is important that you, your family and those close to you have as much support as possible.  Coping by yourselves can be hard work.

We have provided information and links below to a range of services and organisations that can help you, your family and those close to you find the unique support for your needs.

The information is also available in PDF in the Palliative and end of life care services booklet for families

What is palliative and end of life care?

Palliative care is offered when it is clear an illness is no longer curable.  Examples of such illnesses include advanced cancer, heart or lung disease, kidney failure, dementia, and motor neurone disease to mention a few.

Palliative care can help manage your symptoms and help with any emotional, social, financial, practical or spiritual needs you or those people close to you may have.  It can be provided for years, with some people having long periods of being well, moving in and out of palliative care services, depending on their needs.

Palliative care may be provided alongside treatments aimed at controlling your illness and improving your quality of life.  You can receive palliative care at home, in hospital, in a care home or in a hospice/ specialist palliative care unit.  End of life care is a key part of palliative care. Identifying when a person is approaching this stage can be difficult to predict.  Some people prefer to focus on their needs and how these may change rather than a time scale.  Health care professionals will assess your needs so that the right care can be provided for you at the right time.  This allows you to plan ahead for your preferences and wishes.  There are many people involved in providing palliative and end of life care services.  Good communication is important between you, your family and the services to ensure that your needs are met.

GP

Your GP has overall medical responsibility for your care while you are at home and can refer you to other professionals to help with any problems you may have.

You can talk to your GP about all the options for treating your illness and managing symptoms or any aspect of care that you may be worried about.

If you have been assessed as needing home oxygen this can be arranged and prescribed by your own GP, or on some occasions the community respiratory team.

There are GP managed palliative care beds in Inver Intermediate Care Unit in Larne, Dalriada Community Hospital in Ballycastle, Robinson Community Hospital in Ballymoney and Mid Ulster Hospital in Magherafelt.

GP Out of Hours Service (028 2566 3500) – through Dalriada Out of Hours Service – available night time (6pm-8am), 24 hours at weekends and public holidays.

District Nursing

In the community, the district nurse is the palliative care key worker.  This means that the community nursing team, led by the district nurses, will co-ordinate your palliative care services and be your main point of contact.  They work closely with the GP and other professionals to co-ordinate your care.  District nurses will also assess if you need any nursing equipment to help you manage at home.

This service can also provide family and carers with practical advice and support.  The district nurse will ask your permission to record your details on a Trust palliative care register.  This helps the coordination and planning of your care. Contact District Nursing, if needed, through your GP or ‘Call Management’: 028 2563 5521 (9 – 5pm, Mon – Fri).

Hospital Diversion Nursing Team (HDNT)

The Hospital Diversion Nursing Team (HDNT) is an extension to the District Nursing Service.  They work from 8.45am – 10.45pm.  Your district nurse can arrange for the team to visit you after 5pm to assist with your nursing care needs.  The Team may also be able to administer intravenous antibiotics or blood transfusions to you in your own home or at clinic, if this has been pre-arranged with your doctor.  If you have urgent care needs out of hours, you can access the team via Dalriada Urgent Care (028 2566 3500).

Social Worker

Social workers are trained to support people and their families during difficult times in their lives, which includes dealing with a serious illness.  They can help you think about areas you want support with and then look at the available options. Support can be:

• Practical e.g. managing personal care, support around finances, helping you support your children, making arrangements for the future, getting your affairs in order.
• Emotional e.g. dealing with the effects of illness on you, your family and your relationships.
• Social e.g. housing, keeping up your interests, having enough company.
• Spiritual e.g. what’s important to you, your beliefs.

Social workers may link with other staff and services to make sure you have the assistance you need.  Referrals are made via any health care professional involved in your care, including your GP.  If you are over 65 years you can also refer yourself to your local team.

Physiotherapist

Physiotherapy aims to help you maintain or improve independence.  The physiotherapist plays an important role in management of symptoms such as pain, breathlessness, fatigue and lymphoedema. They will assess your mobility and provide walking aids as and when required.  A physiotherapist can also provide individualised exercise programmes aimed at improving muscle strength and mobility, whilst managing your advancing illness.  Referrals can be made by any health or social care professional involved in your care.

Occupational Therapist

Occupational Therapy aims to help you with everyday activities e.g. getting dressed, managing the bath/shower or stairs, leisure activities, helping you to get out and about.  The occupational therapist can look at what tasks are difficult for you and what might help you manage them.  They can teach you new ways of doing activities or provide equipment or adaptations.  They can also provide information and advice on managing symptoms such as fatigue, breathlessness and anxiety or refer you to other professionals, e.g. for practical support.  Referrals can be made by any health or social care professional involved in your care.

Speech and Language Therapist

Speech and Language Therapy (SLT) aims to help you with communication and swallowing difficulties:

• Communication is important to help maintain relationships and enable you to be involved in discussions around your care. The SLT can look at ways to help you communicate as independently as possible.  This might involve advice regarding strategies and/or provision of an alternative communication system.
• Swallowing support: the SLT can be involved in the management of swallowing difficulties in order to maximise your comfort, safety and pleasure in eating and drinking.

Referrals can be made by any health or social care professional or directly by yourself.

Dietitian

The dietitian can assess your nutritional needs and provide advice tailored for you.  The priority for nutrition in palliative care is to promote the enjoyment of food, quality of life, comfort and symptom management.  The dietitian can help you and your family make informed choices about your diet.  Maintaining a good nutritional status can help to retain physical strength to prolong independence.  Referrals are made via your District Nurse or GP.

Pharmacist

Medicines may be useful to help manage symptoms.  Medicines can be administered by lots of different routes.  These can be by the mouth or under the tongue, through injections, pumps, drips, or applying them on the skin.  Your particular symptoms and individual circumstances, will guide what medicine you get and how you take it.  Sometimes if there are several medicines it can become confusing about what to take and when.  If you have any questions about medicines you can ask your doctor, nurse or pharmacist for advice.

Further information about Palliative Care Medications.

Marie Curie

Hospice Care at Home (formerly Nursing Service)

Marie Curie Nurses and Health Care Assistants provide nursing care and support to people in their own homes.  They provide a range of services based on individual need and availability.  They work closely with the District Nurse with the aim of providing the care that is right for you when you need it most.  Their planned nursing services offer overnight care and shorter periods of care during the day.  Each visit may vary in length depending on your individual care requirements.  Referrals are made via your District Nurse.

Urgent Nursing Care (formerly Marie Curie Rapid Response)

If you need urgent nursing support or advice out of hours you can contact a Marie Curie Nurse through the Dalriada Urgent Care Out of Hours service.  Available night time (5:30pm – 8am), 24 hours at weekends and public holidays on 028 2566 3500.

Companion at Home (formerly Marie Curie Helper Service)

The Companion at Home service is a one-to-one support service for anyone who has an advanced, life limiting illness.  The service aims to support you as well as those who are caring for you and is tailored to meet your individual support needs.  A Companion helps with companionship and social support rather than nursing or medical care.  Referrals can made by any health or social care professional or directly by yourself. Tel: 07740456750 (9am – 5pm, Monday to Friday) Email: nihelper@mariecurie.org.uk Website: www.mariecurie.org.uk/helperservice.

NI Hospice at Home Nursing Service

The NI Hospice at Home Service provides nursing care at home for you as well as practical and emotional support and respite for your family and carers.  It allows your carers to have a break, either during the day and early evenings or, if necessary, at night. Referrals are made via your District Nurse.

Macmillan Community Helpers Scheme

This is a volunteer-led service providing practical and emotional support to adults affected by cancer.  These trained volunteers can make a huge difference by providing help tailored to individual needs.  Support can include: light housework or gardening, walking the dog, shopping or running errands, having a chat and signposting to other relevant services.  Volunteers will not be able to help with personal care.  For further information about availability in your area, or to refer yourself or someone you know affected by cancer, contact the Volunteering Team on 028 9070 8610 or email dvsni@macmillan.org.uk.

Specialist Palliative Care Services

On occasions some people with an advanced life limiting illness and complex symptoms require help from the Specialist Palliative Care Teams.  This service is available to people in their own homes, care homes or hospitals and works alongside the general doctors, nurses and other team members.

Northern Ireland Hospice Community Nursing Service

In the community specialist palliative care is provided by the Northern Ireland Hospice.  Specialist nurses with advanced qualifications and experience in palliative care work across local areas providing care through outpatient clinics or visiting you in your own home.  They complement the care provided by the GP and District Nurse by providing specialist advice and support to try to enable you to remain in your preferred place of care, whilst supporting your family.  Referral to this specialist advisory service is via your GP or District Nurse.

Community Specialist Palliative Care Team, Northern Health and Social Care Trust (NHSCT)

The NHSCT Community Specialist Palliative Care Team includes a specialist dietitian, social worker and a palliative medicine consultant.  Currently the team can only provide support and advice to the person, their family and those important to them.  Currently the service is only available at present in the Mid Ulster area.  Referral is via any professional involved in the person’s care.

Macmillan Hospital Specialist Palliative Care Team

In the hospital setting specialist palliative care is provided by a team of Macmillan nurses and doctors who have advanced qualifications and experience in palliative symptom management.  They can provide support, information and advice to you and your family.  They can also provide support to your hospital medical and nursing teams should your needs become more complex. Specialist palliative care includes assessment and management of physical, emotional, social and spiritual issues.  They also liaise closely with other staff in the hospital and community to ensure that the appropriate services are in place for discharge. Referral to the team is via the ward staff.

Palliative Medicine Consultant

Palliative Medicine Consultants are senior doctors with specialist training in palliative medicine, including symptom control and end of life issues.  The doctors meet regularly with the specialist palliative care teams, across hospital and community, to discuss and advise on your care.  If you have complex needs, they can make arrangements to visit you in hospital or at home, or, if appropriate as an outpatient.  Referral to the Palliative Medicine Consultant is via your ward team, Hospice Nurse or GP.

Specialist Inpatient Units

Specialist inpatient units provide a range of care for adults with complex specialist palliative care needs.  They offer support for all areas of your life affected by your illness, to enhance quality of life.  There are two specialist inpatient units available to people who live in the Northern Trust; these are the Macmillan Unit, Antrim and the Northern Ireland Hospice, Belfast. Support is provided by a multidisciplinary team.  This includes doctors, nurses, a social worker, physiotherapist, occupational therapist, dietitian, SLT, chaplain, pharmacist and volunteers.  Referrals to the specialist unit is via your specialist nurse or doctor in charge of your care, if your needs are complex.

Northern Ireland Hospice Out-Patient Service

The Northern Ireland Hospice Out-Patient Service aims to help people manage better manage their condition. Services include fatigue management and energy conservation, relaxation sessions, equipment advice, falls awareness and prevention, breathlessness management and non-medical ways to manage pain. The service can be offered at the NI Hospice or in your own home. Referrals can made by a NI Hospice Nurse or via your GP. The services offered may change over time – check the NI Hospice website to see what is currently available. NI Hospice | Hospice Outreach Services

Spiritual care and chaplaincy

Having a palliative illness can affect you in many different ways and this includes spiritually.  How you express your spirituality is unique to you – it may be through music, the arts, sport, relationships, nature, your faith or a combination of these and other ways.  Caring for your spiritual needs is just as important as caring for your physical well-being.  We all need someone to listen to our fears, desires, hopes and doubts. Chaplains are skilled, non-judgemental listeners for all; whether you have a faith background or not.  They are able to signpost you to various resources regarding your spiritual care. If in hospital or hospice why not ask the team to arrange for you to see a chaplain.

Finances and benefits

Illness can affect you financially.  For example, you or those close to you may need to stop working, or work less.  It can also mean spending more money on things like heating, clothing, hospital parking etc.  Financial problems can feel complicated and intimidating.  Depending on your situation, you may be able to get benefits or other financial and practical support.  There are organisations that can help with free, confidential and independent advice and support.  They can also help with other concerns such as debt, housing, and employment..

If you have a cancer condition, contact;

• Macmillan Benefits Service: Tel: 0300 1233 233 Option 1

For any palliative condition, contact Community Advice

• Causeway: Tel: 028 7034 4817
• Antrim & Newtownabbey: Tel: 028 9590 6505
• Mid & East Antrim (Larne, Carrick and Ballymena) Tel: 028 9600 1333

Support for family and carers

If there is someone at home who looks after you or helps to look after you, the Northern Trust Carer Hub can provide information, signposting and support for them in their role as ‘carer’.  The Trust’s Carer Hub provides a range of support to help carers manage their caring role and any worry that’s associated with it.  Support includes connecting with other carers, providing classes to help while caring and sharing information on what is available.

In particular:

• The Carer Support Programme which includes training and support for carers in issues such as, basic first aid, good nutrition, Pilates, complementary therapies etc.
• Information on how to receive a Carers assessment, to establish support needs of carers.
• Provide a Carer Support Pack containing a variety of leaflets, carers newsletter, support programme and directories providing written practical advice, and contact details of other support organisations.
• Information about support for young carers (young people aged from 8 – 18 who help to provide care for a sick relative), by Barnardo’s Young Carers Service.

For further information about these support services contact the Carer Hub by email: carer.hub@ northerntrust.hscni.net or telephone 028 2766 1210 or visit Carer Hub – NHSCT (hscni.net).

Support for children

Children of all ages will cope differently when someone close to them is ill.  It is important to involve them and talk with them about what is happening in a way that is suitable for their age.  This can be difficult and as parents or someone caring for a child you may feel that by not telling them you are protecting them.  Trying to protect children from difficult news, worry and distress is natural.  However, often children know when something serious is affecting the family, they will be aware of changes in the home and in the adults around them.  Not explaining what’s happening may make them feel more vulnerable and anxious.  Talking openly with your children about the situation gives them a sense of feeling secure, less scared or anxious.  You can reassure your children that they can trust you to be honest with them and that they can ask you any questions.

For further reading and advice

Marie Curie online
Blog by Dr Steve Marshall: “Saying the D word”: how to help parents talk to their children about death

Marie Curie Support Line – Phone 0800 090 2309 to speak with a trained professional about any questions you may have.

Bereavement support

Bereavement can be a difficult time for family and friends. Your hospital nurse or District Nurse can provide a bereavement information pack containing essential information on practical next steps, grief and bereavement and support organisations.  Information on bereavement support organisations is available at: Bereavement – NHSCT (hscni.net)    Alternatively, your GP can provide support and further advice.

Further  information on services

Palliative Care Services: Northern Health and Social Care Trust
Palliative Care in Partnership
Compassionate Communities NI