Palliative and End of Life Care services

Local information and support

Below you'll find information on different local and national organisations and charities who can help you in a range of areas.

An Advance Care Plan can guide your family, carers and healthcare professionals at a time when you may be too sick to make or communicate decisions. It can help to convey your wishes for later in life, and it can reassure those around you that they are caring for you in the way that you want.

Sue Ryder has a great page on their website with lots of information about advance care plans.

Healthwatch Cambridgeshire and Peterborough is your local health and social care champion. From Tydd St Giles to Linton and everywhere in between, they make sure NHS leaders and other decision makers hear your voice and use your feedback to improve care.

They are here to listen to what you like about services and what you think could be improved. Find out more on their website https://www.healthwatchcambridgeshire.co.uk/ 

There are a few national charities that offer support and guidance on talking to children about death and dying.

• Hospice UK has a page dedicated to how to talk to children about death and dying which you might find useful.
• Winston's Wish is a charity which provides grief and bereavement support for children and young people (up to 25) after the death of someone important, along with advice and support for the parents, carers and professionals supporting them.
• Young Minds has a page with information to help you support your child or young person with grief and loss. They've also got advice about where you can find grief support services.

Below is a list of local and national charities wish might be able to help you:

• Action for Pulmonary Fibrosis. This national charity is here for everyone affected by pulmonary fibrosis.
• Alzheimer's Society They have a page on their website dedicated to end of life care.
• Arthur Rank Hospice Charity Supporting people in Cambridgeshire living with an advanced serious illness or other life-limiting condition and those who need end of life care. You can also call them on 01223 675 777 or email reception@arhc.org.uk.
• Carers UK They work to improve support, services and recognition for anyone caring, unpaid, for a family member or friend who is ill, frail, disabled, or has mental health or addiction problems.
• Compassion in Dying They believe a good life should include a good death. In a place you choose, with the people who matter. Having the care and treatments you want, and not the ones you don’t. Because only you know what’s right for you. You can also call them on 0800 999 2434 or email  info@compassionindying.org.uk 
• Cruse Bereavement SupportThey help people through one of the most painful times in life – with bereavement support, information and campaigning.
• Hospice UK Hospice care eases the physical and emotional pain of death and dying, letting people focus on living right until the end. But too many people miss out on this essential care. Hospice UK fights for hospice care for all who need it, for now and forever.
• Marie CurieEveryone deserves the right support at the end of life. They're here for anyone with an illness they’re likely to die from, and their family and friends.
• National Council for Palliative CareThe National Council for Palliative Care (NCPC) is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland.
• Sue Ryder Thorpe Hall Hospice Sue Ryder Thorpe Hall Hospice is the only specialist palliative care inpatient unit in Peterborough. We provide care and support for people who are living with life-limiting conditions, as well as supporting their families. You can call them on 01733 225900 or email thorpehall.admin@nhs.net

The Ambitions framework was developed by a partnership of national organisations across the statutory and voluntary sectors. It sets out NHS England's vision to improve end of life care through partnership and collaborative action between organisations at local level throughout England.

• Ambition 1 – Each person is seen as an individual
• Ambition 2 – Each person gets fair access to care
• Ambition 3 – Maximising comfort and wellbeing
• Ambition 4 – Care is co-ordinated
• Ambition 5 – All staff are prepared to care
• Ambition 6 – Each community is prepared to help

National palliative and end of life care (PEoLC) aims and objectives align to the Ambitions for palliative and end of life care national framework and further information is available on the Future NHS PEoLC Network. To request access, email: england.palliativeandendoflife@nhs.net

There is also an Ambitions catalogue available via Health Education England, which hosts all of the Ambitions Partnership publications.

The Palliative Care Hub is here to help people facing life-limiting illnesses, their family/friends, and health and social care professionals to access the support they need, when they need it. To contact the hub dial 111 and then choose option 4.

What does palliative care mean?

Palliative care describes the support and guidance that people with an incurable condition can access. It is provided to help guide them, their family and friends with ongoing treatment, symptom management and any care needs. It also helps focus on the needs and wishes of the individual, when they are at the end of their life. Palliative care can also be called supportive care, and is managed by specialists who are experienced and enable people to feel heard, and to guide appropriate discussions.

It may include:

• Managing symptoms that affect physical health such as pain, fatigue or breathlessness.
• Ongoing psychological, emotional and spiritual support including faith and beliefs.
• Practical care including physical needs like dressing, washing, and managing dietary intake.
• Guidance and support for family and friends including coping with what to expect.

Palliative care is to enable people to live well for the rest of their life, with an emphasis on their priorities for care to the very end of their life and beyond. Palliative care is often thought to be about caring for the dying, but it is also focused on making each person's wishes matter through holistic, patient-centred care.

A diagnosis of a limiting illness means that some people can live well for many years, and some may live a much shorter time. Other descriptions for palliative care include 'terminal' or 'advanced disease' and as these words suggest, it is also important to consider what you want to happen next, and in the future. This is called Advanced Care Planning.

How can this service help me?

The Palliative Care Hub offers support and guidance. All the nurses on the call-line, are specialists in palliative care and are here to help with advice on matters such as symptom management and quality of life. The Hub will signpost you to community services that are available. Most importantly the Hub nurses are also at the end of the phone to listen, and support you when needed.

Where is this service available?

The service is for anyone living in Cambridgeshire, Peterborough and Royston including The Fens, Huntingdonshire and Wisbech.

What can I call about?

The Hub nurses are here to discuss anything that is causing you concern or worry. Please do not hesitate to contact the Hub if you need to talk to someone. If they cannot directly help you, you will be signposted to an appropriate service.

I am a family member/friend/carer, can I call?

The service is available for patients but also for anyone that has contact with, or is supporting someone who has a palliative condition, including health and social care professionals.

Is this service available if I don't receive care at a hospice?

You do not have to be under the care of a hospice team to be able to access the Palliative Care Hub. If you do contact the Hub, your needs will be assessed by the nurse; any referral to a hospice would be carefully considered and agreed with you, or someone able to consider this for you, if you are unwell. The Hub is a phone service providing a gateway to other support, including possible hospice care if this is needed.

When can I call?

You can call any time. The palliative care hub is a 24 hour service. If the service is busy or unavailable for any reason the call will be answered by the main 111 service. Calls to the service are free of charge.

Is this only for people over a certain age?

The Palliative Care Hub is available to all adults aged 18 and over across Cambridgeshire and Peterborough.

Is the service only for people with cancer?

The service is available for people who have been diagnosed with a progressive or life- limiting illness. This can include dementia, heart failure, respiratory failure, neurological conditions, and more.

Equity and equality:

The Palliative Care Hub is accessible to anyone that needs to access support and advice in the community, when living with a progressive disease.

Cambridgeshire and Peterborough ICS' Palliative and End of Life Care Strategy 2022-26 can be found on our website.

Your views and experiences are important to us, and if you have questions, feedback, compliments, concerns or complaints about local NHS funded services, we want to hear from you. Visit out Patient Experience Team for more information.

Managing symptoms, including pain, is an important part of end of life care. Each person will have different symptoms, depending on their condition and the kind of treatment they may be having.

Symptoms can include feeling and being sick, constipation, loss of appetite and pain. Your doctor and nurses will help you manage your symptoms and feel as comfortable as possible.

Pain

Not everyone approaching the end of life has pain. If you do, your doctor or nurse will assess the pain and decide on a suitable medicine and the correct dose to manage it.

They'll ask you questions about the pain.

These might include:

• where the pain is
• when it started
• the effect it's having on you – for example, whether it's stopping you sleeping

If you have trouble speaking, they may use a different method, like a visual chart or picture cards, or ask your family and carers.

If you're not able to communicate at all, there are other signs that can show you might be in pain, such as grimacing, groaning, changes in breathing and refusing to eat.

The doctor or nurse will sometimes ask the palliative care team to advise them.

The NHS website has a very helpful page about managing pain and other symptoms during end of life care.