Palliative care

Palliative care:

• Provides relief from pain and other distressing symptoms
• Affirms life and regards dying as a normal process
• Intends neither to hasten or postpone death
• Integrates the psychological and spiritual aspects of patient care
• Offers a support system to help patients live as actively as possible until death
• Offers a support system to help the family cope during the patient’s illness and in their own bereavement
• Uses a team approach to address the needs of patients and their families
• Will enhance quality of life, and may also positively influence the course of illness
• Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

The specialist palliative care team may not see every patient who is approaching the end of their life, and we recognise the end of life care is provided by all staff within healthcare. The specialist palliative care team work with colleagues throughout the hospital and community to improve end of life care for those who require it. If your health professional thinks specialist palliative care will help you, you will be referred to our specialist palliative care team at any stage during your illness, if appropriate. It is particularly important if your treatment is no longer working, or not working so well, because good symptom management can help you to live longer and to live comfortably, even if we cannot cure you.

What matters most to you?

Talking about your wishes for future care and writing down your preferences can help those who care for you understand what is important to you. This can inform your care plan and make sure that your preferences and wishes for future care are known and understood by your care team, should you ever be in a position that you cannot tell them yourself.

An advance care plan helps you to consider and record what matters most to you, in the event that you are unable to communicate them. This can include any aspect of your future care, such as how and where you wish to be cared for, as well as any treatments you might want to avoid, alongside practical considerations such as who you would trust to make decisions on your behalf.

Not everyone will choose to think about this and that is okay. However, planning ahead improves the chance of receiving the care you want, and can reduce stress and anxiety amongst those who are important to you.

The York and Scarborough Teaching Hospitals NHS Foundation Trust has produced information to guide you through the process.

Advance care planning: thinking ahead.

The advance care plan is a document for you to fill in your future wishes. This form is to be shared with those who are important to you, your GP and any other health professionals involved in your care.

The hospital specialist palliative care team covers Scarborough, Bridlington, and York Hospitals. The community specialist palliative care service covers the York and Selby area.  If you are referred to the service, you and your family/carers will be offered specialist palliative care and advice by the team, with the help of other colleagues when needed. The specialist palliative care team may include specialist nurses, doctors, and specialist physiotherapist and occupational therapist (York community team only).

You may be referred to us for specialist palliative care by the team looking after you in the hospital or in your own home.

How can we help you?

We may help with or signpost to:

• Assessment of individual needs
• Advice on symptom management.
• Time for you and those important to you to talk through thoughts and feelings about your illness.
• Advice about how to access information about benefits, employment etc.
• Liaising with other teams involved in your care.
• Helping you to make decisions about the future and he place in which you wish to be cared for.
• Maximising independence, safety at home and quality of life.
• Assessments for hospice services.

How do patients and carers access this service?

You need to be referred by a doctor or nurse on the ward where you are having treatment. If you have been discharged from the community specialist palliative care team, you can self-refer yourself for up to 3 months after this time.

What postcode areas does this service cover?

You will have access to specialist palliative care if you are an inpatient at any of our hospitals.  Your home address does not matter.

York office: 01904 725835

Scarborough office: 01723 342446

York Community team: 01904 777770

Scarborough and Ryedale Community Palliative care is provided by St Catherine’s Hospice, Scarborough.

Pocklington Community Palliative care is provided by Humber NHS Trust.

District nursing

The district nursing teams in York provide a 24-hour service to patients in the community. If you have a life-limiting illness they will care for you and help support your family/carers. The teams are led by a qualified district nurse, who has had specialist training in caring for patients at home. They work with registered nurses (community staff nurses) and healthcare support workers.

District nurses cover the whole of York and some surrounding areas and are based in locations around the city. Your GP can refer you to the district nurses on your behalf. You can also be referred from local hospitals, hospices, social services, voluntary sector organisations and carers. For details on how you can contact a district nurse outside of normal working hours, please go to the out-of-hours section.

District Nursing single point of contact telephone number: 01904 721200

District nurse provision for Scarborough and North Ryedale is provided by Humber NHS Trust: S&R Community Services (CAS): 01653 609609.

Hospice care

Hospices care for the whole person, whilst aiming to meet all needs – physical, emotional, social and spiritual. At home, in day care and in the hospice, they care for the person who is facing the end of life and for those who love them. Nearly half of all people admitted to a hospice return home again.

How do patients and carers access this service?

For referrals for hospice care a health care professional will need to fill out and sign a referral form. This can be completed by your GP, district nurse, hospital palliative care team or hospital specialist nurse.

Please follow the following links to our local hospice’s websites for more information:

• St Leonard’s Hospice
• St Catherine’s Hospice

Information for patients and carers

If you live outside of York or Scarborough locality and would like to know the support available in your area, please contact your local GP or hospice.

The Care Quality Commission (CQC) also provides information on how to get started with using health and social care services and what you need to do to find the right care service for you.

Fast Track Care

If a person’s condition is both rapidly deteriorating and may be entering a dying phase, Fast Track Funded Care may be required for immediate provision of NHS Continuing Healthcare. NHS Continuing Healthcare is a care package, funded and arranged by the NHS. NHS Continuing Healthcare means a package of on-going care in your own home or care home that is dependent on your assessed needs and arranged and funded by the NHS.

NHS Continuing Healthcare can be provided in a variety of settings outside hospital, such as in your own home or in a care home.

National guidance on NHS Continuing Healthcare is available from the Health and Social Care website here.

Information and advice are accessible in the form of free and comprehensive written guidance, and individuals are also able to access up to 90 minutes of free advice with a trained NHS continuing healthcare adviser 0345 548 0300.

EPaCCS is short for ‘Electronic Palliative Care Coordination System’.

York and Scarborough hospitals are working together with other health providers to support patients in the last year of life with an electronic coordinated care record.  This will result in improved coordination of care and communication between professionals involved in the care of patients at the end of life across the locality.

What data will be collected and why is it required?

In order for your care to be efficiently coordinated it is essential that your information is shared with other organisations that you have, or will have, involvement with.  The following types of information will be collected and shared with these other organisations:

• Demographic Information (name, address, DOB, etc)
• Current Involvements (name and details of any other health and social care professionals involved with your care)
• Medical Information (diagnosis, allergies, medication, treatment plans etc)
• Legal Information (your expectations, wishes, and details about any power of attorney arrangements you may have)
• Special Requirements (spoken language, disabilities, care preferences)
• Preferred place of care

Your GP, or a member of your care team will be able to tell you exactly what information is collected and recorded on your EPaCCS.

Who has access to my data?

Only professionals and organisations that have involvement with your care will have access to your information.  This could be your GP, district nurse, Palliative Care team, or hospice staff.  The ambulance service is working towards having access in 2021.

Can I see my EPaCCs record?

Your care team will discuss the information in your EPaCCS record with you on a routine basis as part of your care plan. If you wish to have a print out of the information recorded, your care team will be able to provide it for you.

If you do wish to make a request for your full clinical record then you may do so by writing to any organisation that is involved with your care.  This is known as a ‘Subject Access Request’.

Your GP may already have the availability for you to view your wider clinical record online.  This will include your EPaCCS record. Please enquire with your GP to see if this is the case.

What happens if I don’t want my information shared?

EPaCCS is consent based, therefore we will not record information about you in this way unless you have given us instructions to do so. You can do this by providing verbal consent to your GP or a member of your care team.

If you are not in a position to provide consent then your legal guardian or advocate may do so in your place.

If you are not in a position to provide consent and you do not have a legal guardian or advocate then a medical professional will decide if an EPaCCS record is in your best interests. Please see the NHS website on Mental Capacity for further information.

If you do not consent to an EPaCCS record you will still be able to receive care and support from individual providers but it may be more difficult for professionals to coordinate your care and provide you with the very best support.

You may withdraw your consent for your EPaCCS record at any time by asking your GP or a member of your care team. In some circumstances it may be appropriate for professionals to share your data with each other or a third party if there is an overriding legal obligation to do so (for example the detection or prevention of criminal activities).

What is your legal basis for processing my data?

Each organisation will process your data in compliance with the conditions of the Data Protection Act 1998 and the General Data Protection Regulation.  As EPaCCS is based on consent then this is the main legal power for processing your data. However, each organisation also has their own legal powers to process your data for the purposes of providing you with medical care and treatment.

How long is my data kept for?

Your EPaCCS record will be kept for as long as your wider clinical record. Each organisation has their own retention schedule stating how long clinical records must be kept.  You may ask each organisation about their retention periods by contacting them directly.

Finances are often a major problem for palliative care patients and families, due to loss of work or lower earnings.  Additional expenditure can arise from the cost of travel, disrupted routines, needing new clothes because of weight change, cost of equipment aids or additional household appliances, special dietary requirements, child care, etc. Potential costs are many, which can be daunting especially when there may be less money coming in.

Financial concerns can take up a lot of time and cause a lot of worry, when there are other immediate and pressing things to come to terms with, such as medical treatment, increased care needs, and seeking emotional or psychological support.

There are many ways to get advice and support, but many people have never claimed Welfare Benefits before and are unaware of possible grant funding. It is important to bear in mind that Social Security means you pay National Insurance when you are healthy, so you can expect financial support if your health suffers and leaves you incapable of working.

Benefits

The main number to ring for new and existing claims is: 0800 055 6688

Other useful contact organisations for advice on benefits include:

• Carers UK – The Voice of Carers has a section on financial help which includes the main benefits for carers and the people they look after.
• Citizens Advice Bureau – has an online guide with links about benefits for people who are sick or disabled.
• Macmillan Cancer Support - Macmillan provides information on its financial help page and gives information about the Macmillan Benefits Helpline. Macmillan also produces a booklet called ‘Help with the Cost of Cancer: A Guide to Benefits and Financial Help for People Affected by Cancer’, which can be ordered on 0800 500 800.

Grants

• Macmillan Cancer Support awards grants which cover a wide range of practical needs.  Applications are made on the patient’s behalf by healthcare or social work professionals. The website provides information about who can apply and what the grants are for, as well as how the application process works.
• CLIC Sargent may be able to provide care grants to help with immediate financial needs for families who have a child with cancer.

After diagnosis of a serious illness many people begin to look at what is important and meaningful to them. They may look at their relationships with their family and friends, at what they have achieved and what they might want to achieve. This is what many people define as the spiritual element and is an essential part of any one of us, whether religious or not.

The Trust Chaplaincy provide spiritual care to patients, their families and friends directly regarding spiritual or religious concerns or they can help identify and arrange for ministers or representatives of most faiths to visit.

The palliative and end-of-life care research aims to improve care for our patients. 

Improving the quality and availability of palliative and end-of-life care services is therefore a local and national priority for health and care services, commissioners and the NHS. Here at York and Scarborough Trust, we are delighted to be working with our partners, the Wolfston Palliative Care Research Centre at Hull and York Medical School, to improve patient symptoms and wellbeing as they receive palliative care.

What to do if you don't want to take part in research.

Trust resources

• Advance Care Planning Thinking ahead - A guide for patient's families and carers
• Advance Care Planning Thinking ahead - My wishes
• Advance Care Planning Thinking ahead - A guide for patient's families and carers
• Bereavement documents
• Specialist Palliative Care Referral and Discharge Criteria
• Specialist Palliative Care Services in York and Scarborough
• Syringe Drivers Information for patients, relatives and carers
• Unlicensed medicines
• What happens when my heart stops?
• When someone may be dying (information for relatives and friends)

External resources:

• Age UK
• Carers UK
• Department of Health – End of life care
• Dying Matters
• Live Well York
• Marie Curie Cancer Care
• Macmillan Cancer Support
• NHS Choices – End of Life